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Sample records for careful research needed

  1. Health information technology needs help from primary care researchers.

    Science.gov (United States)

    Krist, Alex H; Green, Lee A; Phillips, Robert L; Beasley, John W; DeVoe, Jennifer E; Klinkman, Michael S; Hughes, John; Puro, Jon; Fox, Chester H; Burdick, Tim

    2015-01-01

    While health information technology (HIT) efforts are beginning to yield measurable clinical benefits, more is needed to meet the needs of patients and clinicians. Primary care researchers are uniquely positioned to inform the evidence-based design and use of technology. Research strategies to ensure success include engaging patient and clinician stakeholders, working with existing practice-based research networks, and using established methods from other fields such as human factors engineering and implementation science. Policies are needed to help support primary care researchers in evaluating and implementing HIT into everyday practice, including expanded research funding, strengthened partnerships with vendors, open access to information systems, and support for the Primary Care Extension Program. Through these efforts, the goal of improved outcomes through HIT can be achieved. © Copyright 2015 by the American Board of Family Medicine.

  2. Research Needs Assessment in the Health Insurance Organization: Level of Health Care Provider

    Directory of Open Access Journals (Sweden)

    Mohammadkarim Bahadori

    2011-12-01

    Full Text Available Objective: Setting research priorities in the research management cycle is a key. It is important to set the research priorities to make optimal use of scarce resources. The aim of this research was to determine the research needs of Health Insurance Organization based on its health care centers research needs.Methods: This is a qualitative, descriptive and cross-sectional study that was conducted in 2011. A purposeful sample of 60 participants from 14 hospitals, seven dispensaries, five dental clinics, two rehabilitation centers, four radiology centers, six medical diagnostic laboratories, 12 pharmacies, and 20 medical offices that were contracted with the Health Insurance Organization in Iran was interviewed. The framework analysis method (a qualitative research method was used for analysis of interviews. Atlas-Ti software was used to analyze quantitative data, respectively. The topics were prioritized using the Analytical Hierarchy Process (AHP method through Expert Choice software.Results: Based on the problems extracted in our qualitative study, 12 research topics were proposed by the experts. Among these “Design of standard treatment protocols,” “Designing model of ranking the health care centers under contract,” and “Pathology of payment system” took the priority ranks of 1 to 3, earning the scores of 0.44, 0.42, and 0.37, respectively.Conclusion: Considering limited resources and unlimited needs and to prevent research resource wasting, conducting research related to health care providers in the Health Insurance Organization can help it achieve its goals.

  3. Transition care for children with special health care needs.

    Science.gov (United States)

    Davis, Alaina M; Brown, Rebekah F; Taylor, Julie Lounds; Epstein, Richard A; McPheeters, Melissa L

    2014-11-01

    Approximately 750,000 children in the United States with special health care needs will transition from pediatric to adult care annually. Fewer than half receive adequate transition care. We had conversations with key informants representing clinicians who provide transition care, pediatric and adult providers of services for individuals with special health care needs, policy experts, and researchers; searched online sources for information about currently available programs and resources; and conducted a literature search to identify research on the effectiveness of transition programs. We identified 25 studies evaluating transition care programs. Most (n = 8) were conducted in populations with diabetes, with a smaller literature (n = 5) on transplant patients. We identified an additional 12 studies on a range of conditions, with no more than 2 studies on the same condition. Common components of care included use of a transition coordinator, a special clinic for young adults in transition, and provision of educational materials. The issue of how to provide transition care for children with special health care needs warrants further attention. Research needs are wide ranging, including both substantive and methodologic concerns. Although there is widespread agreement on the need for adequate transition programs, there is no accepted way to measure transition success. It will be essential to establish consistent goals to build an adequate body of literature to affect practice. Copyright © 2014 by the American Academy of Pediatrics.

  4. Information and research needs of acute-care clinical nurses.

    Science.gov (United States)

    Spath, M; Buttlar, L

    1996-01-01

    The majority of nurses surveyed used the library on a regular but limited basis to obtain information needed in caring for or making decisions about their patients. A minority indicated that the libraries in their own institutions totally met their information needs. In fact, only 4% depended on the library to stay abreast of new information and developments in the field. Many of the nurses had their own journal subscriptions, which could account in part for the limited use of libraries and the popularity of the professional journal as the key information source. This finding correlates with the research of Binger and Huntsman, who found that 95% of staff development educators relied on professional journal literature to keep up with current information in the field, and only 45% regularly monitored indexing-and-abstracting services. The present study also revealed that nurses seek information from colleagues more than from any other source, supporting the findings of Corcoran-Perry and Graves. Further research is necessary to clarify why nurses use libraries on a limited basis. It appears, as Bunyan and Lutz contend, that a more aggressive approach to marketing the library to nurses is needed. Further research should include an assessment of how the library can meet the information needs of nurses for both research and patient care. Options to be considered include offering library orientation sessions for new staff nurses, providing current-awareness services by circulating photocopied table-of-contents pages, sending out reviews of new monographs, inviting nurses to submit search requests on a topic, scheduling seminars and workshops that teach CD-ROM and online search strategies, and providing information about electronic databases covering topics related to nursing. Information on databases may be particularly important in light of the present study's finding that databases available in CD-ROM format are consulted very little. Nursing education programs should

  5. Need for global partnership in cancer care: perceptions of cancer care researchers attending the 2010 australia and Asia pacific clinical oncology research development workshop.

    Science.gov (United States)

    Lyerly, H Kim; Abernethy, Amy P; Stockler, Martin R; Koczwara, Bogda; Aziz, Zeba; Nair, Reena; Seymour, Lesley

    2011-09-01

    To understand the diversity of issues and the breadth of growing clinical care, professional education, and clinical research needs of developing countries, not typically represented in Western or European surveys of cancer care and research. A cross-sectional survey was conducted of the attendees at the 2010 Australia and Asia Pacific Clinical Oncology Research Development workshop (Queensland, Australia) about the most important health care questions facing the participant's home countries, especially concerning cancer. Early-career oncologists and advanced oncology trainees from a region of the world containing significant low- and middle-income countries reported that cancer is an emerging health priority as a result of aging of the population, the impact of diet and lifestyle, and environmental pollution. There was concern about the capacity of health care workers and treatment facilities to provide cancer care and access to the latest cancer therapies and technologies. Although improving health care delivery was seen as a critical local agenda priority, focusing on improved cancer research activities in this select population was seen as the best way that others outside the country could improve outcomes for all. The burden of cancer will increase dramatically over the next 20 years, particularly in countries with developing and middle-income economies. Cancer research globally faces significant barriers, many of which are magnified in the developing country setting. Overcoming these barriers will require partnerships sensitive and responsive to both local and global needs.

  6. Research use and support needs, and research activity in social care: a cross-sectional survey in two councils with social services responsibilities in the UK.

    Science.gov (United States)

    Cooke, Jo; Bacigalupo, Ruth; Halladay, Linsay; Norwood, Hayley

    2008-09-01

    The purpose of this study was to investigate the level of research activity, research use, research interests and research skills in the social care workforce in two UK councils with social service responsibilities (CSSRs). A cross-sectional survey was conducted of the social care workforce in two CSSRs (n = 1512) in 2005. The sample was identified in partnership with the councils, and included employees with professional qualifications (social workers and occupational therapists); staff who have a role to assess, plan and monitor care; service managers; commissioners of services; and those involved with social care policy, information management and training. The survey achieved a response rate of 24% (n = 368). The Internet was reported as an effective source of research information; conversely, research-based guidelines were reported to have a low impact on practice. Significant differences were found in research use, by work location, and postgraduate training. Most respondents saw research as useful for practice (69%), and wanted to collaborate in research (68%), but only 11% were planning to do research within the next 12 months. Having a master's degree was associated with a greater desire to lead or collaborate in research. A range of research training needs, and the preferred modes of delivery were identified. Support to increase research activity includes protected time and mentorship. The study concludes that a range of mechanisms to make research available for the social care workforce needs to be in place to support evidence-informed practice. Continual professional development to a postgraduate level supports the use and production of evidence in the social care workforce, and promotes the development of a research culture. The term research is used to include service user consultations, needs assessment and service evaluation. The findings highlight a relatively large body of the social care workforce willing to collaborate and conduct research

  7. Supportive care needs of Iranian cancer patients

    Directory of Open Access Journals (Sweden)

    Azad Rahmani

    2014-01-01

    Full Text Available Background: A supportive needs assessment is an essential component of any care program. There is no research evidence regarding the supportive care needs of cancer patients in Iran or other Middle Eastern countries. Aims: The aim of this study was to determine the supportive care needs of Iranian cancer patients. Materials and Methods: This descriptive study was conducted in a referral medical center in the northwest of Iran. A total of 274 cancer patients completed the Supportive Care Needs Survey (SCNS-59. Descriptive statistics were used for data analysis. Results: In 18 items of the SCNS, more than 50% of the participants reported that their needs were unmet. Most frequently, unmet needs were related to the health system, information, physical, and daily living domains, and most met needs were related to sexuality, patient care, and support domains. Conclusions: Iranian cancer patients experience many unmet needs and there is an urgent need for establishing additional supportive care services in Iran.

  8. Massage Therapy and Canadians’ Health Care Needs 2020: Proceedings of a National Research Priority Setting Summit

    Science.gov (United States)

    Dryden, Trish; Sumpton, Bryn; Shipwright, Stacey; Kahn, Janet; Reece, Barbara (Findlay)

    2014-01-01

    Background The health care landscape in Canada is changing rapidly as forces, such as an aging population, increasingly complex health issues and treatments, and economic pressure to reduce health care costs, bear down on the system. A cohesive national research agenda for massage therapy (MT) is needed in order to ensure maximum benefit is derived from research on treatment, health care policy, and cost effectiveness. Setting A one-day invitational summit was held in Toronto, Ontario to build strategic alliances among Canadian and international researchers, policy makers, and other stakeholders to help shape a national research agenda for MT. Method Using a modified Delphi method, the summit organizers conducted two pre-summit surveys to ensure that time spent during the summit was relevant and productive. The summit was facilitated using the principles of Appreciative Inquiry which included a “4D” strategic planning approach (defining, discovery, dreaming, designing) and application of a SOAR framework (strengths, opportunities, aspirations, and results). Participants Twenty-six researchers, policymakers, and other stakeholders actively participated in the events. Results Priority topics that massage therapists believe are important to the Canadian public, other health care providers, and policy makers and massage therapists themselves were identified. A framework for a national massage therapy (MT) research agenda, a grand vision of the future for MT research, and a 12-month action plan were developed. Conclusion The summit provided an excellent opportunity for key stakeholders to come together and use their experience and knowledge of MT to develop a much-needed plan for moving the MT research and professionalization agenda forward. PMID:24592299

  9. Massage therapy and canadians' health care needs 2020: proceedings of a national research priority setting summit.

    Science.gov (United States)

    Dryden, Trish; Sumpton, Bryn; Shipwright, Stacey; Kahn, Janet; Reece, Barbara Findlay

    2014-03-01

    The health care landscape in Canada is changing rapidly as forces, such as an aging population, increasingly complex health issues and treatments, and economic pressure to reduce health care costs, bear down on the system. A cohesive national research agenda for massage therapy (MT) is needed in order to ensure maximum benefit is derived from research on treatment, health care policy, and cost effectiveness. A one-day invitational summit was held in Toronto, Ontario to build strategic alliances among Canadian and international researchers, policy makers, and other stakeholders to help shape a national research agenda for MT. Using a modified Delphi method, the summit organizers conducted two pre-summit surveys to ensure that time spent during the summit was relevant and productive. The summit was facilitated using the principles of Appreciative Inquiry which included a "4D" strategic planning approach (defining, discovery, dreaming, designing) and application of a SOAR framework (strengths, opportunities, aspirations, and results). Twenty-six researchers, policymakers, and other stakeholders actively participated in the events. Priority topics that massage therapists believe are important to the Canadian public, other health care providers, and policy makers and massage therapists themselves were identified. A framework for a national massage therapy (MT) research agenda, a grand vision of the future for MT research, and a 12-month action plan were developed. The summit provided an excellent opportunity for key stakeholders to come together and use their experience and knowledge of MT to develop a much-needed plan for moving the MT research and professionalization agenda forward.

  10. Comparative Analysis of Health Care Needs among Children with Special Health Care Needs in Ohio's Metropolitan and Appalachian Counties.

    Science.gov (United States)

    Earley, Elizabeth; Asti, Lindsey; Chisolm, Deena

    2015-08-01

    The study assessed whether children with special health care needs (CSHCN) living in Appalachian Ohio have differential health care utilization, unmet needs, and health outcomes compared with CSHCN in Ohio's metropolitan counties using a statewide Ohio survey. Based on this survey, an estimated 28% of children in Appalachian Ohio counties have special health care needs compared with 25% of children in metropolitan counties. In Appalachia, CSHCN are poorer and more likely to have Medicaid than their metropolitan counterparts, but had no reported significant differences in health outcomes or unmet needs. Data suggested a trend toward higher use of emergency department care and inpatient services and lower use of well-child visits but these differences did not reach significance. We conclude that CSHCN in Appalachian and metropolitan areas face similar levels of health status and unmet needs but results suggest a need for additional research on access to primary care services.

  11. Research in cardiovascular care

    DEFF Research Database (Denmark)

    Jaarsma, Tiny; Deaton, Christi; Fitzsimmons, Donna

    2014-01-01

    with the increasing opportunities and challenges in multidisciplinary research, the Science Committee of the Council on Cardiovascular Nursing and Allied Professionals (CCNAP) recognised the need for a position statement to guide researchers, policymakers and funding bodies to contribute to the advancement...... of the body of knowledge that is needed to further improve cardiovascular care. In this paper, knowledge gaps in current research related to cardiovascular patient care are identified, upcoming challenges are explored and recommendations for future research are given....

  12. Patients’ and caregivers’ needs, experiences, preferences and research priorities in spiritual care: A focus group study across nine countries

    Science.gov (United States)

    Selman, Lucy Ellen; Brighton, Lisa Jane; Sinclair, Shane; Karvinen, Ikali; Egan, Richard; Speck, Peter; Powell, Richard A; Deskur-Smielecka, Ewa; Glajchen, Myra; Adler, Shelly; Puchalski, Christina; Hunter, Joy; Gikaara, Nancy; Hope, Jonathon

    2017-01-01

    Background: Spiritual distress is prevalent in advanced disease, but often neglected, resulting in unnecessary suffering. Evidence to inform spiritual care practices in palliative care is limited. Aim: To explore spiritual care needs, experiences, preferences and research priorities in an international sample of patients with life-limiting disease and family caregivers. Design: Focus group study. Setting/participants: Separate patient and caregiver focus groups were conducted at 11 sites in South Africa, Kenya, South Korea, the United States, Canada, the United Kingdom, Belgium, Finland and Poland. Discussions were transcribed, translated into English and analysed thematically. Results: A total of 74 patients participated: median age 62 years; 53 had cancer; 48 were women. In total, 71 caregivers participated: median age 61 years; 56 were women. Two-thirds of participants were Christian. Five themes are described: patients’ and caregivers’ spiritual concerns, understanding of spirituality and its role in illness, views and experiences of spiritual care, preferences regarding spiritual care, and research priorities. Participants reported wide-ranging spiritual concerns spanning existential, psychological, religious and social domains. Spirituality supported coping, but could also result in framing illness as punishment. Participants emphasised the need for staff competence in spiritual care. Spiritual care was reportedly lacking, primarily due to staff members’ de-prioritisation and lack of time. Patients’ research priorities included understanding the qualities of human connectedness and fostering these skills in staff. Caregivers’ priorities included staff training, assessment, studying impact, and caregiver’s spiritual care needs. Conclusion: To meet patient and caregiver preferences, healthcare providers should be able to address their spiritual concerns. Findings should inform patient- and caregiver-centred spiritual care provision, education and

  13. Community participation in primary care in Ireland: the need for implementation research.

    LENUS (Irish Health Repository)

    McEvoy, Rachel

    2012-04-30

    There are now several decades of history of community participation in health, with significant international evidence to suggest that there is much to be gained by primary health services and disadvantaged communities working in partnership.In this paper we provide an overview of community participation in primary care, establishing the policy context in which a recent \\'Joint Initiative on Community Participation in Primary Health Care\\' was developed in Ireland. This Initiative was designed to support the involvement of disadvantaged communities and groups in the development of primary health care services at local level.An independent formative evaluation of the Joint Initiative took place between September 2009 and April 2010. We present a summary of key findings from this evaluation. We pay particular attention to the issue of sustaining community participation in newly developed Primary Care Teams (PCTs) in the current and changing economic climate, an issue considered crucial if the documented positive impacts of the Joint Initiative are to be maintained and the potential for health gains in the longer term are to be realised.We then argue that the Joint Initiative referred to in this paper clearly provides a strong prototype for community participation in PCTs in Ireland. We also ask whether it can be replicated across all PCTs in the country and embedded as a core part of thinking and everyday health care. We highlight the need for research to build knowledge about the ways in which innovations such as this can be embedded into ongoing, routine healthcare practice. This research agenda will have relevance for policy makers, practitioners and evaluators in Ireland and other healthcare jurisdictions.

  14. Health care need

    DEFF Research Database (Denmark)

    Hasman, Andreas; Hope, Tony; Østerdal, Lars Peter

    2006-01-01

    The argument that scarce health care resources should be distributed so that patients in 'need' are given priority for treatment is rarely contested. In this paper, we argue that if need is to play a significant role in distributive decisions it is crucial that what is meant by need can be precis......The argument that scarce health care resources should be distributed so that patients in 'need' are given priority for treatment is rarely contested. In this paper, we argue that if need is to play a significant role in distributive decisions it is crucial that what is meant by need can...... be precisely articulated. Following a discussion of the general features of health care need, we propose three principal interpretations of need, each of which focuses on separate intuitions. Although this account may not be a completely exhaustive reflection of what people mean when they refer to need...

  15. [Gap between the use of and need for youth care: research in Rotterdam neighbourhoods].

    Science.gov (United States)

    Jansen, Wilma; Mieloo, Cathelijne L; Anschutz, Justine; de Zwart, Onno

    2015-01-01

    To determine the relationship between the need for care and the use of care in the youth care system at neighbourhood level and the relationship with population characteristics, with consideration of the decentralisation of youth care. Descriptive, retrospective study. Data on youth care use, indicators of need for care and population characteristics were gathered from monitors and the records of the municipality, institutions and health insurance companies. Data were grouped on a neighbourhood level (n = 49). For the analyses we used univariate and multivariate regression. We used these to distinguish between neighbourhoods with large and small gaps between youth care use and need for youth care. Differences between these neighbourhoods were analysed with t-tests. A multivariate model showed that the percentage of youths with emotional problems and behavioural problems and the percentage of parents with self-reported need for care were not predictors of youth care use at a neighbourhood level. About two thirds of the variance in youth care use between neighbourhoods could be explained by the population characteristics of a neighbourhood, particularly the percentage of youths originally from non-western countries, the percentage of youths with a low level of education or special training and the percentage of people who received income support. The number of 12-18-year-olds in a neighbourhood was a predictor of youth mental health care, and the percentage of youths in a single-parent family was a predictor of out-patient youth and parenting support. Neighbourhoods with a large gap between the need for and use of youth care were socially more disadvantaged than neighbourhoods with a smaller gap. Population characteristics explain the rate of use of youth care better than the need for youth care in a neighbourhood as measured by municipal monitors. The possible gap between the use of and need for youth care on an individual level in neighbourhoods with many

  16. The supportive care needs of parents caring for a child with a rare disease: A scoping review.

    Science.gov (United States)

    Pelentsov, Lemuel J; Laws, Thomas A; Esterman, Adrian J

    2015-10-01

    Parents caring for a child with a rare disease report unmet needs, the origins of which are varied and complex. Few studies have systematically attempted to identify the supportive care needs of parents with a child with a rare disease comprehensively. We have used the widely accepted Supportive Care Needs Framework (SCNF) as the structure for this review. The purpose of the current review was to identify the supportive care needs of parents with a child with a rare disease, irrespective of condition. We conducted a scoping study review comprising 29 studies (1990-2014) to identify and examine the research literature related to the supportive care needs of parents, and to compare these needs with the seven domains outlined in the SCNF. Most common needs cited were social needs (72% of papers), followed by informational needs (65% of papers) and emotional needs (62% of papers), with the most common parental needs overall being information about their child's disease, emotional stress, guilt and uncertainty about their child's future health care needs, parents own caring responsibilities and the need for more general support. A paucity of studies exists that explore the supportive care needs of parents of a child with a rare disease. The SCNF only partially reflects the breadth and type of needs of these parents, and a preliminary revised framework has been suggested. Further research is required in this area, particularly empirical research to amend or confirm the suggested new framework. Copyright © 2015 Elsevier Inc. All rights reserved.

  17. Identifying the conditions needed for integrated knowledge translation (IKT) in health care organizations: qualitative interviews with researchers and research users.

    Science.gov (United States)

    Gagliardi, Anna R; Dobrow, Mark J

    2016-07-12

    Collaboration among researchers and research users, or integrated knowledge translation (IKT), enhances the relevance and uptake of evidence into policy and practice. However, it is not widely practiced and, even when well-resourced, desired impacts may not be achieved. Given that large-scale investment is not the norm, further research is needed to identify how IKT can be optimized. Interviews were conducted with researchers and research users (clinicians, managers) in a health care delivery (HCDO) and health care monitoring (HCMO) organization that differed in size and infrastructure, and were IKT-naïve. Basic qualitative description was used. Participants were asked about IKT activities and challenges, and recommendations for optimizing IKT. Data were analysed inductively using constant comparative technique. Forty-three interviews were conducted (28 HCDO, 15 HCMO) with 13 researchers, 8 clinicians, and 22 managers. Little to no IKT took place. Participants articulated similar challenges and recommendations revealing that a considerable number of changes were needed at the organizational, professional and individual levels. Given the IKT-absent state of participating organizations, this research identified a core set of conditions which must be addressed to prepare an environment conducive to IKT. These conditions were compiled into a framework by which organizations can plan for, or evaluate their capacity for IKT. The IKT capacity framework is relevant for organizations in which there is no current IKT activity. Use of the IKT framework may result in more organizations that are ready to initiate and establish IKT, perhaps ultimately leading to more, and higher-quality collaboration for health system innovation. Further research is needed to confirm these findings in other organizations not yet resourced for, or undertaking IKT, and to explore the resource implications and mechanisms for establishing the conditions identified here as essential to preparing for

  18. A Research Program on Implementing Integrated Care for Older Adults with Complex Health Needs (iCOACH: An International Collaboration

    Directory of Open Access Journals (Sweden)

    Walter P. Wodchis

    2018-05-01

    Full Text Available Health and social care systems across western developed nations are being challenged to meet the needs of an increasing number of people aging with multiple complex health and social needs. Community based primary health care (CBPHC has been associated with more equitable access to services, better population level outcomes and lower system level costs. Itmay be well suited to the increasingly complex needs of populations; however the implementation of CBPHC models of care faces many challenges. This paper describes a program of research by an international, multi-university, multidisciplinary research team who are seeking to understand how to scale up and spread models of Integrated CBPHC (ICBPHC. The key question being addressed is “What are the steps to implementing innovative integrated community-based primary health care models that address the health and social needs of older adults with complex care needs?” and will be answered in three phases. In the first phase we identify and describe exemplar models of ICBPHC and their context in relation to relevant policies and performance across the three jurisdictions (New Zealand, Ontario and Québec, Canada. The second phase involves a series of theory-informed, mixed methods case studies from which we shall develop a conceptual framework that captures not only the attributes of successful innovative ICBPHC models, but also how these models are being implemented. In the third phase, we aim to translate our research into practice by identifying emerging models of ICBPHC in advance, and working alongside policymakers to inform the development and implementation of these models in each jurisdiction. The final output of the program will be a comprehensive guide to the design, implementation and scaling-up of innovative models of ICBPHC.

  19. CSHCN in Texas: meeting the need for specialist care.

    Science.gov (United States)

    Young, M Cherilyn; Drayton, Vonna L C; Menon, Ramdas; Walker, Lesa R; Parker, Colleen M; Cooper, Sam B; Bultman, Linda L

    2005-06-01

    Assuring the sufficiency and suitability of systems of care and services for children with special health care needs (CSHCN) presents a challenge to Texas providers, agencies, and state Title V programs. To meet the need for specialist care, referrals from primary care doctors are often necessary. The objective of this study was to describe the factors associated with the need for specialist care and problems associated with obtaining referrals in Texas. Bivariate and multivariate analyses were performed using the National Survey of Children with Special Health Care Needs (NS-CSHCN) weighted sample for Texas (n = 719,014) to identify variables associated with the need for specialist care and problems obtaining referrals for specialist care. Medical need of the CSHCN and sensitivity to family values/customs was associated with greater need for specialist care, and Hispanic ethnicity and lower maternal education were associated with less need. Medical need, amount of time spent with doctors and sensitivity to values/customs, living in a large metropolitan statistical area, and lack of medical information were associated with problems obtaining a specialist care referral. Findings revealed some similarities and differences with meeting the need for specialist care when comparing Texas results to other studies. In Texas, aspects of customer satisfaction variables, especially doctors' sensitivity to family values/customs and parents' not receiving enough information on medical problems, were significantly associated with problems obtaining specialist referrals. Findings indicate a need to further research relationships and communication among doctors, CSHCN, and their families.

  20. Association of functional limitation with health care needs and experiences of children with special health care needs.

    Science.gov (United States)

    Nageswaran, Savithri; Silver, Ellen Johnson; Stein, Ruth E K

    2008-05-01

    The goal was to evaluate whether having a functional limitation was associated with health care needs and experiences of children with special health care needs. We used caregivers' responses in the National Survey of Children with Special Health Care Needs (2001). Functional limitation was categorized as severe, some, or no limitation. We performed analyses of the relationships of functional limitation to measures of health care needs and experiences. Children with special health care needs with severe functional limitation were more likely to have received specialized educational services, to have had physician visits, and to have needed health services, compared with those with no limitation. They had significantly greater odds of delayed care, unmet health care and care-coordination needs, referral problems, dissatisfaction, and difficulty using health services, compared with those without limitation. Caregivers of children with special health care needs with severe limitation were twice as likely as those with no limitation to report that providers did not spend enough time, listen carefully, provide needed information, and make family members partners in the child's care. Compared with children with special health care needs without limitation, those with severe limitation had worse health insurance experiences, in terms of insurance coverage, copayments, being able to see needed providers, and problems with health insurance. The impact on families (financial problems, need to provide home care, or need to stop or to cut work) of children with special health care needs with severe functional limitation was much greater than the impact on families of children with special health care needs without limitation. For most measures examined, results for some limitation were between those for severe limitation and no limitation. Functional limitation is significantly associated with the health care needs and experiences of children with special health care needs.

  1. Public and patient involvement in needs assessment and social innovation: a people-centred approach to care and research for congenital disorders of glycosylation.

    Science.gov (United States)

    de Freitas, Cláudia; Dos Reis, Vanessa; Silva, Susana; Videira, Paula A; Morava, Eva; Jaeken, Jaak

    2017-09-26

    Public and patient involvement in the design of people-centred care and research is vital for communities whose needs are underserved, as are people with rare diseases. Innovations devised collectively by patients, caregivers, professionals and other members of the public can foster transformative change toward more responsive services and research. However, attempts to involve lay and professional stakeholders in devising community-framed strategies to address the unmet needs of rare diseases are lacking. In this study, we engaged with the community of Congenital Disorders of Glycosylation (CDG) to assess its needs and elicit social innovations to promote people-centred care and research. Drawing on a qualitative study, we conducted three think tanks in France with a total of 48 participants, including patients/family members (n = 18), health care professionals (n = 7), researchers (n = 7) and people combining several of these roles (n = 16). Participants came from 20 countries across five continents. They were selected from the registry of the Second World Conference on CDG through heterogeneity and simple random sampling. Inductive and deductive approaches were employed to conduct interpretational analysis using open, axial and selective coding, and the constant-comparison method to facilitate the emergence of categories and core themes. The CDG community has unmet needs for information, quality health care, psychosocial support and representation in decision-making concerned with care and research. According to participants, these needs can be addressed through a range of social innovations, including peer-support communities, web-based information resources and a CDG expertise platform. This is one of the few studies to engage lay and professional experts in needs assessment and innovation for CDG at a global level. Implementing the innovations proposed by the CDG community is likely to have ethical, legal and social implications associated with the

  2. Individualising Chronic Care Management by Analysing Patients' Needs - A Mixed Method Approach.

    Science.gov (United States)

    Timpel, P; Lang, C; Wens, J; Contel, J C; Gilis-Januszewska, A; Kemple, K; Schwarz, P E

    2017-11-13

    Modern health systems are increasingly faced with the challenge to provide effective, affordable and accessible health care for people with chronic conditions. As evidence on the specific unmet needs and their impact on health outcomes is limited, practical research is needed to tailor chronic care to individual needs of patients with diabetes. Qualitative approaches to describe professional and informal caregiving will support understanding the complexity of chronic care. Results are intended to provide practical recommendations to be used for systematic implementation of sustainable chronic care models. A mixed method study was conducted. A standardised survey (n = 92) of experts in chronic care using mail responses to open-ended questions was conducted to analyse existing chronic care programs focusing on effective, problematic and missing components. An expert workshop (n = 22) of professionals and scientists of a European funded research project MANAGE CARE was used to define a limited number of unmet needs and priorities of elderly patients with type 2 diabetes mellitus and comorbidities. This list was validated and ranked using a multilingual online survey (n = 650). Participants of the online survey included patients, health care professionals and other stakeholders from 56 countries. The survey indicated that current care models need to be improved in terms of financial support, case management and the consideration of social care. The expert workshop identified 150 patient needs which were summarised in 13 needs dimensions. The online survey of these pre-defined dimensions revealed that financial issues, education of both patients and professionals, availability of services as well as health promotion are the most important unmet needs for both patients and professionals. The study uncovered competing demands which are not limited to medical conditions. The findings emphasise that future care models need to focus stronger on individual patient needs and

  3. Why Health Care Needs Design Research: Broadening the Perspective on Communication in Pediatric Care Through Play.

    Science.gov (United States)

    Knutz, Eva; Ammentorp, Jette; Kofoed, Poul-Erik

    2015-01-01

    Today's pediatric health care lacks methods to tap into the emotional state of hospitalized pediatric patients (age 4-6 years). The most frequently used approaches were developed for adults and fail to acknowledge the importance of imaginary experiences and the notion of play that may appeal to children. The scope of this article is to introduce a new design-oriented method of gathering information about the emotional state of pediatric patients using an experimental computer game called the Child Patient game (CPgame). The CPgame was developed at a Danish hospital, and the results of the preliminary tests show that games could serve as a system in which children are willing to express their emotions through play. The results are based on two comparative analyses of the CPgame through which it is possible to identify three different types of players among the patients playing the game. Furthermore, the data reveal that pediatric patients display a radically different play pattern than children who are not in hospital. The inquiry takes an interdisciplinary approach; it has obvious health care-related objectives and seeks to meet the urgent need for new methods within health care to optimize communication with young children. At the same time, design research (i.e., the development of new knowledge through the development of a new design) heavily impacts the method.

  4. Integrating unmet needs into dementia health-related quality of life research and care: Introduction of the Hierarchy Model of Needs in Dementia.

    Science.gov (United States)

    Scholzel-Dorenbos, Carla J M; Meeuwsen, Els J; Olde Rikkert, Marcel G M

    2010-01-01

    To make an inventory of needs assessment instruments in dementia, to explore the interaction between unmet needs and health-related quality of life (HRQoL) and to relate these to the conceptual model of Maslow's Hierarchy of needs in order to design a dementia-specific model. Narrative review of literature on (measures of) needs of patients and caregivers and HRQoL determinants important in dementia. Relating these needs to individual goal setting instruments and Maslow's Hierarchy of needs model. The Camberwell Assessment of Needs for the Elderly (CANE) turns out to be a valid tool to assess needs of dementia patients, suitable for research and clinical use. The Carers' Needs Assessment for Dementia (CNA-D) is a valid instrument to assess needs of caregivers. Patients identified significantly fewer needs than (in)formal caregivers. The most important needs, that also determine large part of HRQoL, are need for information; support with regard to symptoms of dementia; social contact and company; and for health monitoring and safety. Goal attainment scaling in dementia is an important but not yet valid outcome measure, with only few data on feasibility in dementia patients. There are several instruments to assess needs of dementia patients and caregivers. Domains of unmet needs and HRQoL overlap. The Hierarchy Model of Needs in Dementia (HMND) offers a new theoretical framework to address the interplay between meeting of needs and improvement of HRQoL in dementia. By identifying unmet needs in dementia-research and focussing on unmet needs in dementia-care, much can be done to improve HRQoL.

  5. Dental care needs, use and expenditures among U.S. children with and without special health care needs.

    Science.gov (United States)

    Iida, Hiroko; Lewis, Charlotte; Zhou, Chuan; Novak, Louise; Grembowski, David

    2010-01-01

    Controversy exists in the literature about whether dental care needs, use and expenditures differ between children with and without special health care needs (SHCN). The authors used data from the 2005 Medical Expenditure Panel Survey (MEPS) for children younger than 18 years. The MEPS questionnaire included the Children with Special Health Care Needs Screener, which defines a child as having SHCN if he or she meets at least one of five specific criteria. Using bivariate and multivariable regression analyses, the authors evaluated the effect of SHCN on unmet dental care needs, type of dental care received and average dental care expenditures. Children with special health care needs (CSHCN) had an adjusted odds ratio (AOR) of 1.49 (95 percent confidence interval [CI] = 1.09-2.05) of having unmet dental care needs compared with children without SHCN, and CSHCN who met four or five screener criteria had an AOR of 2.2 (95 percent CI = 1.16-4.20). CSHCN used more dental care services and were more likely to receive only nonpreventive care. Average dental care expenditures were not statistically different between CSHCN and children without SHCN, and there was variability among CSHCN in unmet dental care needs and use. Unmet dental care needs are associated independently with SHCN status and complexity (based on the number of screener criteria the child met). The CSHCN populations in MEPS varied in their ability to obtain and use needed dental care services. Practice Implications. It is important to consider the diversity of CSHCN when developing systems of dental care for this population.

  6. Researcher Self-Care in Emotionally Demanding Research: A Proposed Conceptual Framework.

    Science.gov (United States)

    Kumar, Smita; Cavallaro, Liz

    2018-03-01

    Researchers are emotionally and psychologically affected by emotionally demanding research that demands a tremendous amount of mental, emotional, or physical energy and potentially affects or depletes the researcher's well-being. Little attention has been given to preparing doctoral students and novice researchers engaged in such studies. Four possible types of emotionally demanding research experiences are presented: sensitive issues, personal trauma previously experienced, experience of traumatic life events during research, and unexpected events that arise during research in what was previously not identified as a sensitive issue. The need for self-care is highly relevant to each type, despite their different impacts on researcher well-being. This conceptual article furthers conversation in the field about how researchers and educators can address the need for self-care to prepare novice researchers and proposes a conceptual framework for researcher self-care in emotionally demanding research, with an aim for future empirical study.

  7. Stigma and need for care in individuals who hear voices.

    Science.gov (United States)

    Vilhauer, Ruvanee P

    2017-02-01

    Voice hearing experiences, or auditory verbal hallucinations, occur in healthy individuals as well as in individuals who need clinical care, but news media depict voice hearing primarily as a symptom of mental illness, particularly schizophrenia. This article explores whether, and how, public perception of an exaggerated association between voice hearing and mental illness might influence individuals' need for clinical care. A narrative literature review was conducted, using relevant peer-reviewed research published in the English language. Stigma may prevent disclosure of voice hearing experiences. Non-disclosure can prevent access to sources of normalizing information and lead to isolation, loss of social support and distress. Internalization of stigma and concomitantly decreased self-esteem could potentially affect features of voices such as perceived voice power, controllability, negativity and frequency, as well as distress. Increased distress may result in a decrease in functioning and increased need for clinical care. The literature reviewed suggests that stigma has the potential to increase need for care through many interrelated pathways. However, the ability to draw definitive conclusions was constrained by the designs of the studies reviewed. Further research is needed to confirm the findings of this review.

  8. Care coordination and unmet specialty care among children with special health care needs.

    Science.gov (United States)

    Boudreau, Alexy Arauz; Perrin, James M; Goodman, Elizabeth; Kurowski, Daniel; Cooley, W Carl; Kuhlthau, Karen

    2014-06-01

    Care coordination and the medical home may ensure access to specialty care. Children with special health care needs (CSHCN) have higher rates of specialty care use and unmet need compared with the general pediatric population. We hypothesized that care coordination, regardless of whether it was provided in a medical home, would decrease unmet specialty care needs among CSHCN and that the effect of care coordination would be greater among low-income families. Secondary data analysis of participants in the 2009–2010 National Survey of CSHCN who reported unmet specialty care needs and for whom care coordination and medical home status could be determined (n = 18 905). Logistic regression models explored the association of unmet need with care coordination and medical home status adjusting for household income. Approximately 9% of CSHCN reported having unmet specialty care needs. Care coordination was associated with reduced odds of unmet specialty care need (without a medical home, odds ratio: 0.63, 95% confidence interval: 0.47–0.86; within a medical home, odds ratio: 0.22, 95% confidence interval: 0.16–0.29) with a greater reduction among those receiving care coordination within a medical home versus those receiving care coordination without a medical home. We did not find differences in the impact of care coordination by percentage of the federal poverty level. Care coordination is associated with family report of decreased unmet specialty care needs among CSHCN independent of household income. The effect of care coordination is greater when care is received in a medical home.

  9. Individualising Chronic Care Management by Analysing Patients’ Needs – A Mixed Method Approach

    Directory of Open Access Journals (Sweden)

    P. Timpel

    2017-11-01

    Full Text Available Background: Modern health systems are increasingly faced with the challenge to provide effective, affordable and accessible health care for people with chronic conditions. As evidence on the specific unmet needs and their impact on health outcomes is limited, practical research is needed to tailor chronic care to individual needs of patients with diabetes. Qualitative approaches to describe professional and informal caregiving will support understanding the complexity of chronic care. Results are intended to provide practical recommendations to be used for systematic implementation of sustainable chronic care models. Method: A mixed method study was conducted. A standardised survey (n = 92 of experts in chronic care using mail responses to open-ended questions was conducted to analyse existing chronic care programs focusing on effective, problematic and missing components. An expert workshop (n = 22 of professionals and scientists of a European funded research project MANAGE CARE was used to define a limited number of unmet needs and priorities of elderly patients with type 2 diabetes mellitus and comorbidities. This list was validated and ranked using a multilingual online survey (n = 650. Participants of the online survey included patients, health care professionals and other stakeholders from 56 countries. Results: The survey indicated that current care models need to be improved in terms of financial support, case management and the consideration of social care. The expert workshop identified 150 patient needs which were summarised in 13 needs dimensions. The online survey of these pre-defined dimensions revealed that financial issues, education of both patients and professionals, availability of services as well as health promotion are the most important unmet needs for both patients and professionals. Conclusion: The study uncovered competing demands which are not limited to medical conditions. The findings emphasise that future care

  10. The need for consumer behavior analysis in health care coverage decisions.

    Science.gov (United States)

    Thompson, A M; Rao, C P

    1990-01-01

    Demographic analysis has been the primary form of analysis connected with health care coverage decisions. This paper reviews past demographic research and shows the need to use behavioral analyses for health care coverage policy decisions. A behavioral model based research study is presented and a case is made for integrated study into why consumers make health care coverage decisions.

  11. Using Geographic Information Systems (GIS) to understand a community's primary care needs.

    Science.gov (United States)

    Dulin, Michael F; Ludden, Thomas M; Tapp, Hazel; Blackwell, Joshua; de Hernandez, Brisa Urquieta; Smith, Heather A; Furuseth, Owen J

    2010-01-01

    A key element for reducing health care costs and improving community health is increased access to primary care and preventative health services. Geographic information systems (GIS) have the potential to assess patterns of health care utilization and community-level attributes to identify geographic regions most in need of primary care access. GIS, analytical hierarchy process, and multiattribute assessment and evaluation techniques were used to examine attributes describing primary care need and identify areas that would benefit from increased access to primary care services. Attributes were identified by a collaborative partnership working within a practice-based research network using tenets of community-based participatory research. Maps were created based on socioeconomic status, population density, insurance status, and emergency department and primary care safety-net utilization. Individual and composite maps identified areas in our community with the greatest need for increased access to primary care services. Applying GIS to commonly available community- and patient-level data can rapidly identify areas most in need of increased access to primary care services. We have termed this a Multiple Attribute Primary Care Targeting Strategy. This model can be used to plan health services delivery as well as to target and evaluate interventions designed to improve health care access.

  12. Interorganizational Care needs Horizontal Governance

    OpenAIRE

    Spierenburg, Monique; van de Schoot, Rian

    2016-01-01

    Interorganizational Governance isn’t a theme for research yet. Because of the complexity of problems of (new) clients there is an urgent need to cooperate in networks of welfare, care, initiatives of citizens, general practitioners and others. And because of the policy of the (local) government, the transition of the healthcare systems, with the vision to help people close by. In these practice we see new ideas and forms of governance.What’s the problem? Decentralization, integration and pers...

  13. Patients’ needs for care in public mental health: unity and diversity of self-assessed needs for care

    Directory of Open Access Journals (Sweden)

    Tanja eBellier-Teichmann

    2016-02-01

    Full Text Available Purpose. Needs assessment is recognized to be a key element of mental health care. Patients tend to present heterogeneous profiles of needs. However, there is no consensus in previous research about how patients’ needs are organized. This study investigates both general and specific dimensions of patients’ needs for care. Methods. Patients’ needs were assessed with ELADEB, an 18-domain self-report scale. The use of a self-assessment scale represents a unique way of obtaining patients’ perceptions. A patient-centered psychiatric practice facilitates empowerment as it is based on the patients’ personal motivations, needs and wants. 471 patients’ profiles were analyzed through exploratory factor analysis. Results. A four-factor bi-factor model, including one general factor and three specific factors of needs was most adequate. Specific factors were: (a ‘finances’ and ‘administrative tasks’; (b ‘transports’, ‘public places’, ‘self-care’, ‘housework’ and ‘food’; (c ‘family’, ‘children’, ‘intimate relationships’ and ‘friendship’.Conclusions. As revealed by the general factor, patients expressing urgent needs in some domains are also more susceptible to report urgent needs in several other domains. This general factor relates to high versus low utilizers of public mental healthcare. Patients also present specific needs in life domains, which are organized in three dimensions: management; functional disabilities; familial and interpersonal relationships. These dimensions relate to the different types of existing social support described in the literature.

  14. Unmet dental needs and barriers to care for children with significant special health care needs.

    Science.gov (United States)

    Nelson, Linda P; Getzin, Anne; Graham, Dionne; Zhou, Jing; Wagle, Elke M; McQuiston, Jessie; McLaughlin, Suzanne; Govind, Akshay; Sadof, Matthew; Huntington, Noelle L

    2011-01-01

    The purpose of this study was to conduct the first known large scale survey of parents of children with special health care needs (CSHCN) to determine their child's: oral health status; access to dental care; perceived barriers (environmental/system and nonenvironmental/family); and oral health quality of life, accounting for each child's medical diagnosis and severity of diagnosis. A 72-item survey was sent to 3760 families of CSHCN throughout urban and rural Massachusetts. The study yielded 1,128 completed surveys. More than 90% of the children had seen a dentist within the past year; 66% saw a pediatric dentist, and 21% needed intense behavioral interventions. Although most families had high education levels, private dental insurance, and above average incomes, 20% of CSHCN had an unmet dental need. Children with craniofacial anomalies had twice as many unmet needs and children with cystic fibrosis had fewer unmet needs. Children with cerebral palsy, autism, developmental delay, and Down syndrome had more aversions to dental treatment, more treatment complications posed by their medical conditions, and more difficulty finding a dentist willing to provide care. Children with cystic fibrosis, metabolic disorders, or hemophilia encountered fewer barriers to care. The data paint a picture of high unmet dental needs with subpopulations of children with special health care needs who are more at risk for system barriers and internal family barriers to care based on their medical diagnoses.

  15. Partnered research in healthcare delivery redesign for high-need, high-cost patients: development and feasibility of an Intensive Management Patient-Aligned Care Team (ImPACT).

    Science.gov (United States)

    Zulman, Donna M; Ezeji-Okoye, Stephen C; Shaw, Jonathan G; Hummel, Debra L; Holloway, Katie S; Smither, Sasha F; Breland, Jessica Y; Chardos, John F; Kirsh, Susan; Kahn, James S; Asch, Steven M

    2014-12-01

    We employed a partnered research healthcare delivery redesign process to improve care for high-need, high-cost (HNHC) patients within the Veterans Affairs (VA) healthcare system. Health services researchers partnered with VA national and Palo Alto facility leadership and clinicians to: 1) analyze characteristics and utilization patterns of HNHC patients, 2) synthesize evidence about intensive management programs for HNHC patients, 3) conduct needs-assessment interviews with HNHC patients (n = 17) across medical, access, social, and mental health domains, 4) survey providers (n = 8) about care challenges for HNHC patients, and 5) design, implement, and evaluate a pilot Intensive Management Patient-Aligned Care Team (ImPACT) for a random sample of 150 patients. HNHC patients accounted for over half (52 %) of VA facility patient costs. Most (94 %) had three or more chronic conditions, and 60 % had a mental health diagnosis. Formative data analyses and qualitative assessments revealed a need for intensive case management, care coordination, transitions navigation, and social support and services. The ImPACT multidisciplinary team developed care processes to meet these needs, including direct access to team members (including after-hours), chronic disease management protocols, case management, and rapid interventions in response to health changes or acute service use. Two-thirds of invited patients (n = 101) enrolled in ImPACT, 87 % of whom remained actively engaged at 9 months. ImPACT is now serving as a model for a national VA intensive management demonstration project. Partnered research that incorporated population data analysis, evidence synthesis, and stakeholder needs assessments led to the successful redesign and implementation of services for HNHC patients. The rigorous design process and evaluation facilitated dissemination of the intervention within the VA healthcare system. Employing partnered research to redesign care for high-need, high

  16. Unmet Health Care Needs among Children Exposed to Parental Incarceration.

    Science.gov (United States)

    Turney, Kristin

    2017-05-01

    Objectives The incarceration rate in the United States has increased rapidly since the mid-1970s and, accordingly, a large number of children are exposed to parental incarceration. Research finds that parental incarceration is associated with deleterious physical and mental health outcomes among children, but little is known about these children's health care access. Methods I used data from the 2011-2012 National Survey of Children's Health (N = 95,531), a population-based and nationally representative survey of non-institutionalized children ages 0-17 in the United States, to estimate the association between exposure to parental incarceration and children's unmet health care needs. Results In logistic regression models that adjust for an array of demographic and socioeconomic characteristics, children exposed to parental incarceration, compared to their counterparts, have 1.26 (95% CI 1.02-1.54) times the odds of having any unmet health care need. Analyses that disaggregate by type of unmet health care need (mental, dental, vision, mental health, or other) suggest this association is driven by a greater likelihood of unmet mental health care needs (OR 1.60; 95% CI 1.04-2.46). Conclusions Children exposed to parental incarceration, a vulnerable group especially at risk of physical and mental health problems, face challenges to health care access, especially mental health care access. Given that parental incarceration is concentrated among those children most in need of health care, parental incarceration may exacerbate existing inequalities in unmet health care needs.

  17. Do unmet needs differ geographically for children with special health care needs?

    Science.gov (United States)

    Fulda, Kimberly G; Johnson, Katandria L; Hahn, Kristen; Lykens, Kristine

    2013-04-01

    The purpose of this study was to identify geographic differences in health indicators for children with special health care needs (CSHCN). It was hypothesized that geographic differences in unmet health care needs exist among CSHCN by region in the United States. Data were obtained from the National Survey of Children with Special Health Care Needs, 2005-2006. Nine variables representing unmet needs were analyzed by geographic region. The region with the highest percent of unmet needs was identified for each service. Logistic regression was utilized to determine differences by region after controlling for age, gender, ethnicity, race, federal poverty level, relationship of responder to child, insurance status, severity of condition, and size of household. A total of 40,723 CSHCN were represented. Crude analysis demonstrated that the greatest unmet need for routine preventive care, specialist care, prescription medications, physical/occupational/speech therapy, mental health care, and genetic counseling occurred in the West. The greatest unmet need for preventive dental care, respite care, and vision care occurred in the South. Significant differences between regions remained for six of the nine services after controlling for potential confounders. Geographic differences in unmet health care needs exist for CSHCN. Further delving into these differences provides valuable information for program and policy planning and development. Meeting the needs of CSHCN is important to reduce cost burden and improve quality of life for the affected child and care providers.

  18. Information needs of physicians, care coordinators, and families to support care coordination of children and youth with special health care needs (CYSHCN).

    Science.gov (United States)

    Ranade-Kharkar, Pallavi; Weir, Charlene; Norlin, Chuck; Collins, Sarah A; Scarton, Lou Ann; Baker, Gina B; Borbolla, Damian; Taliercio, Vanina; Del Fiol, Guilherme

    2017-09-01

    Identify and describe information needs and associated goals of physicians, care coordinators, and families related to coordinating care for medically complex children and youth with special health care needs (CYSHCN). We conducted 19 in-depth interviews with physicians, care coordinators, and parents of CYSHCN following the Critical Decision Method technique. We analyzed the interviews for information needs posed as questions using a systematic content analysis approach and categorized the questions into information need goal types and subtypes. The Critical Decision Method interviews resulted in an average of 80 information needs per interview. We categorized them into 6 information need goal types: (1) situation understanding, (2) care networking, (3) planning, (4) tracking/monitoring, (5) navigating the health care system, and (6) learning, and 32 subtypes. Caring for CYSHCN generates a large amount of information needs that require significant effort from physicians, care coordinators, parents, and various other individuals. CYSHCN are often chronically ill and face developmental challenges that translate into intense demands on time, effort, and resources. Care coordination for CYCHSN involves multiple information systems, specialized resources, and complex decision-making. Solutions currently offered by health information technology fall short in providing support to meet the information needs to perform the complex care coordination tasks. Our findings present significant opportunities to improve coordination of care through multifaceted and fully integrated informatics solutions. © The Author 2017. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For Permissions, please email: journals.permissions@oup.com

  19. Mind the gap: gender differences in child special health care needs.

    Science.gov (United States)

    Leiter, Valerie; Rieker, Patricia P

    2012-07-01

    The gendered nature of special health care needs in childhood is an important yet understudied area. Although gendered differences in the prevalence of special health care needs have been documented, there is less knowledge about the factors which contribute to those differences. Two research questions guide this inquiry. First, is the gender gap consistent across child special health care need indicators? Second, to what extent is the gender gap in special health care needs driven by behavioral conditions? We use multiple indicators from the U.S. National Survey of Children's Health to expand our understanding about the dynamic relationship between gender and childhood health. There are clear gender differences in the prevalence of special health care needs. Boys are more likely than girls to have special health care needs overall and on the five separate components examined (medication, more care than typical, limitations, special therapies, and educational or behavioral problem). This gender gap is dynamic and varies by indicator; while behavioral conditions play a role, it remains even after controlling for behavioral conditions. The reasons for the gender differences appear to be both biological and social but much remains unknown about this pattern.

  20. Receipt of preventive dental care among special-needs children enrolled in Medicaid: a crisis in need of attention.

    Science.gov (United States)

    Mitchell, Jean M; Gaskin, Darrell J

    2008-10-01

    Although not widely recognized, tooth decay is the most common childhood chronic disease among children ages five to seventeen. Despite higher rates of dental caries and greater needs, low-income minority children enrolled in Medicaid are more likely to go untreated relative to their higher income counterparts. No research has examined this issue for children with special needs. We analyzed Medicaid enrollment and claims data for special-needs children enrolled in the District of Columbia Medicaid program to evaluate receipt of recommended preventive dental care. Use of preventive dental care is abysmally low and has declined over time. Enrollment in managed care rather than fee for service improves the likelihood that special-needs children receive recommended preventive dental services, whereas residing farther from the Metro is an impediment to receipt of dental care.

  1. Trends in Unmet Need for Genetic Counseling Among Children With Special Health Care Needs, 2001-2010.

    Science.gov (United States)

    Smith, Anna Jo; Oswald, Donald; Bodurtha, Joann

    2015-01-01

    Access to genetic counseling is increasingly important to guide families' and clinicians' decision making, yet there is limited research on accessibility and affordability of counseling for families with children with special health care needs (CSHCN). Our study's objectives were to measure changes in unmet need for genetic counseling for CSHCN from 2001 to 2010 and to characterize child, family, and health system factors associated with unmet need. We used parent-reported data from the 2001, 2005-2006, and 2009-2010 National Survey of Children With Special Health Care Needs. We used a logistic regression model to measure the impact of survey year, child (sex, age, severity of health condition), family (primary language, household income, insurance, financial problems related to cost of CSHCN's health care), and health system factors (region, genetic counselors per capita, having a usual source of care) on access to genetic counseling. Unmet need for genetic counseling increased significantly in 2009-2010 compared to 2001 (odds ratio 1.89; 95% confidence interval [CI] 1.44-2.47). Being older (adjusted odds ratio [aOR] 1.04; 95% CI 1.02-1.06), having severe health limitations (aOR 1.72; 95% CI 1.16-2.58), being uninsured (aOR 3.56; 95% CI 2.16-5.87), and having family financial problems due to health care costs (aOR 1.90; 95% CI 1.52-2.38) were significantly associated with greater unmet need for genetic counseling. Having a usual source of care was associated with decreased unmet need (aOR 0.55; 95% CI 0.37-0.83). Unmet need for genetic counseling has increased over the past 12 years. Uninsurance and financial problems related to health care costs were the largest drivers of unmet need over time. Copyright © 2015 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.

  2. Care coordination, medical complexity, and unmet need for prescription medications among children with special health care needs.

    Science.gov (United States)

    Aboneh, Ephrem A; Chui, Michelle A

    Children with special health care needs (CSHCN) have multiple unmet health care needs including that of prescription medications. The objectives of this study were twofold: 1) to quantify and compare unmet needs for prescription medications for subgroups of CSHCN without and with medical complexity (CMC)-those who have multiple, chronic, and complex medical conditions associated with severe functional limitations and high utilization of health care resources, and 2) to describe its association with receipt of effective care coordination services and level of medical complexity. A secondary data analysis of the 2009/2010 National Survey of CSHCN, a nationally representative telephone survey of parents of CSHCN, was conducted. Logistic regression models were constructed to determine associations between unmet need for prescription medications and medical complexity and care coordination for families of CSHCN, while controlling for demographic variables such as race, insurance, education level, and household income. Analyses accounted for the complex survey design and sampling weights. CMC represented about 3% of CSHCN. CMC parents reported significantly more unmet need for prescription medications and care coordination (4%, 68%), compared to Non-CMC parents (2%, 40%). Greater unmet need for prescription medications was associated with unmet care coordination (adjusted OR 3.81; 95% CI: 2.70-5.40) and greater medical complexity (adjusted OR 2.01; 95% CI: 1.00-4.03). Traditional care coordination is primarily facilitated by nurses and nurse practitioners with little formal training in medication management. However, pharmacists are rarely part of the CSHCN care coordination model. As care delivery models for these children evolve, and given the complexity of and numerous transitions of care for these patients, pharmacists can play an integral role to improve unmet needs for prescription medications. Copyright © 2016 Elsevier Inc. All rights reserved.

  3. Health information needs of professional nurses required at the point of care

    Directory of Open Access Journals (Sweden)

    Esmeralda Ricks

    2015-06-01

    Conclusion: This study has enabled the researcher to identify the information needs required by professional nurses at the point of care to enhance the delivery of patient care. The research results were used to develop a mobile library that could be accessed by professional nurses.

  4. Racial/ethnic differences in perceived need for mental health care and disparities in use of care among those with perceived need in 1990-1992 and 2001-2003.

    Science.gov (United States)

    Ault-Brutus, Andrea; Alegria, Margarita

    2018-02-01

    This study examines whether there are racial/ethnic differences in perceived need for mental health care among those with a mood and/or anxiety disorder in 1990-1992 and 2001-2003 in the US. Then among those with perceived need, we examine whether racial/ethnic disparities in use of mental health care existed in both time periods. Using data from the 1990-1992 National Comorbidity Survey (NCS) and 2001-2003 National Comorbidity Survey - Replication (NCS-R), the study analyzes whether whites differed from blacks and Latinos in rates of perceived need among those with a mood and/or anxiety disorder in 1990-1992 and 2001-2003. Then among those with a disorder and perceived need, rates of mental health care use for whites are compared to black rates and Latino rates in within the 1990-1992 cohort and then within the 2001-2003 cohort. There were no statistical racial/ethnic differences in perceived need in both time periods. Among those with perceived need in 1990-1992, there were no statistical racial/ethnic disparities in the use of mental health care. However, in 2001-2003, disparities in mental health care use existed among those with perceived need. The emergence of racial/ethnic disparities in use of mental health care among those with a perceived need for care in 2001-2003 suggests that personal/cultural belief along with issues concerning access and quality of mental health care may create barriers to receiving perceived needed care. More research is needed to understand why these disparities emerged among those with perceived need in the latter time period and whether these disparities continue to exist in more recent years.

  5. Health information needs of professional nurses required at the point of care.

    Science.gov (United States)

    Ricks, Esmeralda; ten Ham, Wilma

    2015-06-11

    Professional nurses work in dynamic environments and need to keep up to date with relevant information for practice in nursing to render quality patient care. Keeping up to date with current information is often challenging because of heavy workload, diverse information needs and the accessibility of the required information at the point of care. The aim of the study was to explore and describe the information needs of professional nurses at the point of care in order to make recommendations to stakeholders to develop a mobile library accessible by means of smart phones when needed. The researcher utilised a quantitative, descriptive survey design to conduct this study. The target population comprised 757 professional nurses employed at a state hospital. Simple random sampling was used to select a sample of the wards, units and departments for inclusion in the study. A convenience sample of 250 participants was selected. Two hundred and fifty structured self-administered questionnaires were distributed amongst the participants. Descriptive statistics were used to analyse the data. A total of 136 completed questionnaires were returned. The findings highlighted the types and accessible sources of information. Information needs of professional nurses were identified such as: extremely drug-resistant tuberculosis, multi-drug-resistant tuberculosis, HIV, antiretrovirals and all chronic lifestyle diseases. This study has enabled the researcher to identify the information needs required by professional nurses at the point of care to enhance the delivery of patient care. The research results were used to develop a mobile library that could be accessed by professional nurses.

  6. Need, access, and the reach of integrated care: A typology of patients.

    Science.gov (United States)

    Bridges, Ana J; Villalobos, Bianca T; Anastasia, Elizabeth A; Dueweke, Aubrey R; Gregus, Samantha J; Cavell, Timothy A

    2017-06-01

    This paper is a report on a study exploring a potential typology of primary care patients referred for integrated behavioral health care (IBHC) services. We considered whether primary care patients could be grouped into meaningful clusters based on perceived need for behavioral health services, barriers to accessing care, and past-year service utilization. We also described the development of a working partnership between our university-based research team and a federally qualified health center (FQHC). A total of 105 adult primary care patients referred for same-day behavioral health appointments completed a brief self-report questionnaire assessing past-year behavioral health concerns, service utilization, and perceived barriers to utilization. Hierarchical and k-means cluster analyses revealed 3 groups: (a) Well-Served patients, characterized by high perceived need for services, high service use, and low barriers to service use (40%); (b) Underserved patients, characterized by high perceived need, low service utilization, and high barriers to service use (20%); and (c) Subclinical patients, characterized by low perceived need, low service use, and low barriers to service use (20%). Clusters were reliably differentiated by age, primary language, insurance status, and global functioning. We found primary care patients could be grouped into 3 categories and that 60% (Underserved and Subclinical) represented groups less commonly seen in traditional mental health (MH) settings. IBHC may be a promising approach for extending the reach of MH care, and partnerships between FQHCs and university-based research teams may be a promising approach for conducting research on the IBHC service-delivery model. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

  7. Mental health care services for children with special health care needs and their family members: prevalence and correlates of unmet needs.

    Science.gov (United States)

    Ganz, Michael L; Tendulkar, Shalini A

    2006-06-01

    To estimate the prevalence and correlates of unmet needs for mental health care services for children with special health care needs and their families. We use the National Survey of Children With Special Health Care Needs to estimate the prevalence of unmet mental health care needs among children with special health care needs (1-17 years old) and their families. Using logistic-regression models, we also assess the independent impact of child and family factors on unmet needs. Substantial numbers of children with special health care needs and members of their families have unmet needs for mental health care services. Children with special health care needs who were poor, uninsured, and were without a usual source of care were statistically significantly more likely to report that their mental health care needs were unmet. More severely affected children and those with emotional, developmental, or behavioral conditions were also statistically significantly more likely to report that their mental health care needs went unmet. Families of severely affected children or of children with emotional, developmental, or behavioral conditions were also statistically significantly more likely to report that their mental health care needs went unmet. Our results indicate that children with special health care needs and their families are at risk for not receiving needed mental health care services. Furthermore, we find that children in families of lower socioeconomic status are disproportionately reporting higher rates of unmet needs. These data suggest that broader policies to identify and connect families with needed services are warranted but that child- and family-centered approaches alone will not meet the needs of these children and their families. Other interventions such as anti-poverty and insurance expansion efforts may be needed as well.

  8. Survivorship care needs among LGBT cancer survivors.

    Science.gov (United States)

    Seay, Julia; Mitteldorf, Darryl; Yankie, Alena; Pirl, William F; Kobetz, Erin; Schlumbrecht, Matthew

    2018-05-23

    To better understand survivorship care needs among LGBT cancer survivors. We administered an anonymous online survey. LGBT cancer survivors living in the United States. Participants were recruited via the National LGBT Cancer Project. The survey measured sociodemographic characteristics, social support, posttraumatic stress, and survivorship care needs. Approximately 72% of our 114 participants were cisgender male and 87% were white. Almost all participants reported at least some unmet survivorship care needs (73%), with over half of participants reporting unmet psychological and sexuality care needs. Participants who reported their oncologist was not LGBT-competent had greater unmet needs (t(82) = 2.5, p = 0.01) and greater posttraumatic stress (t(91) = 2.1, p = 0.035). LGBT cancer survivors have significant unmet survivorship care needs, and lack of oncologist LGBT-competence is associated with unmet needs. Implications for Psychosocial Providers: Our results suggest the need for LGBT competency training for providers.

  9. Leaders, leadership and future primary care clinical research

    Directory of Open Access Journals (Sweden)

    Qureshi Nadeem

    2008-09-01

    Full Text Available Abstract Background A strong and self confident primary care workforce can deliver the highest quality care and outcomes equitably and cost effectively. To meet the increasing demands being made of it, primary care needs its own thriving research culture and knowledge base. Methods Review of recent developments supporting primary care clinical research. Results Primary care research has benefited from a small group of passionate leaders and significant investment in recent decades in some countries. Emerging from this has been innovation in research design and focus, although less is known of the effect on research output. Conclusion Primary care research is now well placed to lead a broad re-vitalisation of academic medicine, answering questions of relevance to practitioners, patients, communities and Government. Key areas for future primary care research leaders to focus on include exposing undergraduates early to primary care research, integrating this early exposure with doctoral and postdoctoral research career support, further expanding cross disciplinary approaches, and developing useful measures of output for future primary care research investment.

  10. Needs of Parents in Caring for Their Children in a Pediatric Intensive Care Unit

    Directory of Open Access Journals (Sweden)

    Mery Luz Valderrama Sanabria

    Full Text Available Objective.This work sought to describe the needs of parents to participate in caring for their children hospitalized in a pediatric intensive care unit (PICU. Methods. This is a qualitative study based on the ethno-nursing research method proposed by Leininger. For data collection and analysis, in-depth open interviews were used, along with field notes and enabler guidelines proposed by Leininger: stranger-friend, observation, participation, reflexion, and the Sunrise model. Parents of children hospitalized in a PICU in the city of Tunja (Boyacá, Colombia participated between February 2012 and October 2013. Results. The needs of parents to care for their children were described in the following themes: clear and timely communication, familiarization with technology, the value of the family, favoring the parent-children interaction during visits, and valuing and respecting generic (folk knowledge. Conclusion. The study provides knowledge, from the cultural perspective of parents with children hospitalized in PICU, as input to plan and develop care actions with them, according to their own needs.

  11. Migrant children's health problems, care needs, and inequalities: European primary care paediatricians' perspective.

    Science.gov (United States)

    Carrasco-Sanz, A; Leiva-Gea, I; Martin-Alvarez, L; Del Torso, S; van Esso, D; Hadjipanayis, A; Kadir, A; Ruiz-Canela, J; Perez-Gonzalez, O; Grossman, Z

    2018-03-01

    Primary care paediatricians' perception of migrant children's health in Europe has not been explored before. Our aim was to examine European paediatricians' knowledge on migrant children's health problems, needs, inequalities, and barriers to access health care. European primary care paediatricians were invited by the European Academy of Paediatrics Research in Ambulatory Setting Network country coordinators to complete a web-based survey concerning health care of migrant children. A descriptive analysis of all variables was performed. The survey was completed by 492 paediatricians. Sixty-three per cent of the respondents reported that the general health of migrant children is worse than that of nonmigrants, chronic diseases cited by 66% of the respondents as the most frequent health problem. Sixty-six per cent of the paediatricians reported that migrant children have different health needs compared to nonmigrant children, proper oral health care mentioned by 86% of the respondents. Cultural/linguistic factors have been reported as the most frequent barrier (90%).to access health care. However, only 37% of providers have access to professional interpreters and cultural mediators. Fifty-two per cent and 32% do not know whether one or more of the family members are undocumented and whether they are refugees/asylum seekers, respectively. Updated guidelines for care of migrant children are available for only 35% of respondents, and 80% of them have not received specific training on migrant children's care. European primary care paediatricians recognize migrant children as a population at risk with more frequent and specific health problems and needs, but they are often unaware of their legal state. Lack of interpreters augments the existing language barriers to access proper care and should be solved. Widespread lack of guidelines and specific providers' training should be addressed to optimize health care delivery to migrant children. © 2017 John Wiley & Sons Ltd.

  12. The Healthy People 2010 outcomes for the care of children with special health care needs: an effective national policy for meeting mental health care needs?

    Science.gov (United States)

    Spears, Amanda P

    2010-05-01

    To assess the effectiveness of the Maternal and Child Health Bureau's (MCHB) Six Core Outcomes for children with special health care needs (CSHCN) as indicators in measuring the degree to which mental health care needs are met. This study analyzes data from the 2001 National Survey of Children with Special Health Care Needs for 9,748 CSHCN who needed mental health care. Bivariate and logistic analyses were employed to investigate the impact of the MCHB's Six Core Outcomes on the probability of having an unmet need for mental health services. Of the 2.3 million CSHCN in the U.S. who needed mental health care in 2001, almost one-fifth did not receive all of the mental health services that they needed. Ultimately, eight Outcomes and sub-categories of Outcomes were considered. Sixty-one percent of CSHCN with a need for mental health care had care that fulfills six of the eight considered Outcomes. Logistic analysis indicates that individual fulfillment of each of the Core Outcomes and fulfillment of additional Outcomes have a significant association with reducing the probability of having an unmet mental health care need for CSHCN. This study is the first attempt to apply the Six Core Outcomes to meeting the needs for mental health care among CSHCN. Estimates of unmet need for mental health care suggest that efforts can be made to improve access for CSHCN. The initial estimates generated by this study indicate that the MCHB Outcomes are important in meeting children's mental health needs and are important indicators for informing MCHB policy.

  13. Unmet needs for cardiovascular care in Indonesia.

    Science.gov (United States)

    Maharani, Asri; Tampubolon, Gindo

    2014-01-01

    In the past twenty years the heaviest burden of cardiovascular diseases has begun to shift from developed to developing countries. However, little is known about the real needs for cardiovascular care in these countries and how well those needs are being met. This study aims to investigate the prevalence and determinants of unmet needs for cardiovascular care based on objective assessment. Multilevel analysis is used to analyse the determinants of met needs and multilevel multiple imputation is applied to manage missing data. The 2008 Indonesian Family Life Survey (IFLS4) survey is the source of the household data used in this study, while district data is sourced from the Ministry of Health and Ministry of Finance. The data shows that nearly 70% of respondents with moderate to high cardiovascular risk failed to receive cardiovascular care. Higher income, possession of health insurance and residence in urban areas are significantly associated with met needs for cardiovascular care, while health facility density and physician density show no association with them. The prevalence of unmet needs for cardiovascular care is considerable in Indonesia. Inequality persists as a factor in meeting needs for cardiovascular care as the needs of people with higher incomes and those living in urban areas are more likely to be met. Alleviation of poverty, provision of health care insurance for the poor, and improvement in the quality of healthcare providers are recommended in order to meet this ever-increasing need.

  14. Unmet needs for cardiovascular care in Indonesia.

    Directory of Open Access Journals (Sweden)

    Asri Maharani

    Full Text Available In the past twenty years the heaviest burden of cardiovascular diseases has begun to shift from developed to developing countries. However, little is known about the real needs for cardiovascular care in these countries and how well those needs are being met. This study aims to investigate the prevalence and determinants of unmet needs for cardiovascular care based on objective assessment.Multilevel analysis is used to analyse the determinants of met needs and multilevel multiple imputation is applied to manage missing data. The 2008 Indonesian Family Life Survey (IFLS4 survey is the source of the household data used in this study, while district data is sourced from the Ministry of Health and Ministry of Finance. The data shows that nearly 70% of respondents with moderate to high cardiovascular risk failed to receive cardiovascular care. Higher income, possession of health insurance and residence in urban areas are significantly associated with met needs for cardiovascular care, while health facility density and physician density show no association with them.The prevalence of unmet needs for cardiovascular care is considerable in Indonesia. Inequality persists as a factor in meeting needs for cardiovascular care as the needs of people with higher incomes and those living in urban areas are more likely to be met. Alleviation of poverty, provision of health care insurance for the poor, and improvement in the quality of healthcare providers are recommended in order to meet this ever-increasing need.

  15. Dental care and children with special health care needs: a population-based perspective.

    Science.gov (United States)

    Lewis, Charlotte W

    2009-01-01

    This paper grew out of a project reviewing progress in children's oral health after Oral Health in America: A Report of the Surgeon General was published in 2000. It includes a summary of advances in national surveillance of children with special health care needs (CSHCN), and presents more recent data on unmet dental care need among CSHCN. To that end, we used the 2006 National Survey of Children with Special Health Care Needs to determine the prevalence of unmet dental care need among CSHCN and to compare this within subgroups of CSHCN, as well as to children without special health care needs, and to results from the previous iteration of this survey. Dental care remains the most frequently cited unmet health need for CSHCN. More CSHCN had unmet needs for nonpreventive than preventive dental care. CSHCN who are teens, poorer, uninsured, had insurance lapses, or are more severely affected by their condition had higher adjusted odds of unmet dental care needs. CSHCN who were both low income and severely affected had 13.4 times the adjusted odds of unmet dental care need. In summary, CSHCN are more likely to be insured and to receive preventive dental care at equal or higher rates than children without special health care needs. Nevertheless, CSHCN, particularly lower income and severely affected, are more likely to report unmet dental care need compared with unaffected children. Despite advances in knowledge about dental care among CSHCN, unanswered questions remain. Recommendations are provided toward obtaining additional data and facilitating dental care access for this vulnerable population.

  16. Urgent Need for Improved Mental Health Care and a More Collaborative Model of Care

    Science.gov (United States)

    Lake, James; Turner, Mason Spain

    2017-01-01

    Current treatments and the dominant model of mental health care do not adequately address the complex challenges of mental illness, which accounts for roughly one-third of adult disability globally. These circumstances call for radical change in the paradigm and practices of mental health care, including improving standards of clinician training, developing new research methods, and re-envisioning current models of mental health care delivery. Because of its dominant position in the US health care marketplace and its commitment to research and innovation, Kaiser Permanente (KP) is strategically positioned to make important contributions that will shape the future of mental health care nationally and globally. This article reviews challenges facing mental health care and proposes an agenda for developing a collaborative care model in primary care settings that incorporates conventional biomedical therapies and complementary and alternative medicine approaches. By moving beyond treatment delivery via telephone and secure video and providing earlier interventions through primary care clinics, KP is shifting the paradigm of mental health care to a collaborative care model focusing on prevention. Recommendations are to expand current practices to include integrative treatment strategies incorporating evidence-based biomedical and complementary and alternative medicine modalities that can be provided to patients using a collaborative care model. Recommendations also are made for an internal research program aimed at investigating the efficacy and cost-effectiveness of promising complementary and alternative medicine and integrative treatments addressing the complex needs of patients with severe psychiatric disorders, many of whom respond poorly to treatments available in KP mental health clinics. PMID:28898197

  17. Using research evidence to inform staff learning needs in cross-cultural communication in aged care homes.

    Science.gov (United States)

    Gillham, David; De Bellis, Anita; Xiao, Lily; Willis, Eileen; Harrington, Ann; Morey, Wendy; Jeffers, Lesley

    2018-04-01

    Developed countries worldwide are facing an unprecedented demand for aged care services, with recent migrants of diverse linguistic and cultural backgrounds increasingly recruited as care workers while at the same time there is growing cultural diversity among aged care residents. This situation is compounded by rapidly changing technology and varied educational levels of care workers from diverse backgrounds. The objectives were threefold: to identify staff learning needs to enable them to provide high-quality cross-cultural care; to improve team cohesion; and identify preferred learning approaches. An interpretive qualitative study utilising focus group and interview data informed the development of an education resource. Fifty six care workers from four residential aged care facilities participated in either focus groups or interviews conducted in private meeting rooms within the care facilities. Participants included personal care attendants, registered and clinical nurses, managers, hospitality staff and allied health professionals. Focus group and interview data were categorised and thematically analysed. Data relevant to cross-cultural care, team cohesion and preferred learning approaches informed education resource development, including case studies. Major themes identified the need to promote cultural awareness and understanding, and strategies for cross-cultural care and communication. Themes related to team cohesion demonstrated that staff were already sympathetic and sensitive to cross-cultural issues, and that culturally and linguistically diverse staff add value to the workforce and are supported by the organisation. Staff required clear, uncomplicated education resources to equip them with skills to address problematic cultural situations. Preferred learning approaches varied and highlighted the need for varied educational materials and approaches, as well as time efficient, opportunistic education strategies for the busy workplace. An education

  18. The comparative palliative care needs of those with heart failure and cancer patients.

    LENUS (Irish Health Repository)

    O'Leary, Norma

    2012-02-01

    PURPOSE OF REVIEW: Patients with heart failure seem particularly suited to palliative care having needs that fall within the prototypical palliative care domains. Despite this there is still much debate as to who should respond to these needs and when. RECENT FINDINGS: Since the early 1990s many studies have been published outlining the unmet needs of patients with heart failure. However, there have been limitations to these studies and they have not guided professionals as to how to respond. More recently comparative studies using cancer as the reference have explored similarities and highlighted differences in need between heart failure and cancer patients. These studies are useful for informing future service development. SUMMARY: Patients with heart failure have variable needs and variable disease trajectories. A targeted response to these needs is required. Palliative triggers or transitions should be recognized by professionals caring for patients with heart failure. It is unlikely that either specialist palliative care or medical specialists working in isolation will be sufficiently experienced to respond to these needs. Research is required to determine the effectiveness of different collaborative approaches; heart failure specialist care aligned with palliative care consultancy or heart failure-oriented palliative care services.

  19. Training needs assessment of health care professionals in a developing country: the example of Saint Lucia.

    Science.gov (United States)

    Gaspard, Janice; Yang, Che-Ming

    2016-04-16

    Continuing education (CE) is crucial for quality improvement in health care. The needs assessment of CE helps ensure effectiveness. However, such an assessment necessitates certain techniques that are unfamiliar to health care communities in developing countries. This study identifies the needs of providing CE to health care personnel in Saint Lucia. This study was designed as a questionnaire survey to investigate the demographics, training needs, and preferred approaches to improve performance of the target population. The study population included the health care professionals of major public health care facilities in Saint Lucia. We used the World Health Organization-adopted Hennessy Hicks Training Needs Analysis Questionnaire, a self-reported close-ended structured questionnaire with a core set of 30 items. These items refer to tasks that are central to the role of health care professionals and are categorized into six superordinate categories: research/audit, communication/teamwork, clinical skills, administrative, managerial/supervisory, and continuing professional education. In total, 208 questionnaires were distributed; the response rate was 66.8%, and most respondents were nurses. The need for continuing professional education was rated the highest priority, followed by research/audit activities. The evidence suggests that most respondents required training in communication skills, management, clinical skills, and research methods. Providing training according to the needs is vital, particularly in developing countries. The present research methodology and findings offer perspectives on how to conduct needs assessment and offer reference points for developing countries whose background and health care environment are similar to those of Saint Lucia.

  20. The motivational needs of primary health care nurses to acquire ...

    African Journals Online (AJOL)

    The motivational needs of primary health care nurses to acquire power as leaders in ... Ethical considerations were adhered to and respondents gave written ... Validity and reliability principles were applied during the entire research process.

  1. Safety and community: the maternity care needs of rural parturient women.

    Science.gov (United States)

    Kornelsen, Jude; Grzybowski, Stefan

    2005-06-01

    To investigate rural parturient women's experiences of obstetric care in the context of the social and economic realities of life in rural, remote, and small urban communities. Data collection for this exploratory qualitative study was carried out in 7 rural communities chosen to represent diversity of size, distance to hospital with Caesarean section capability and distance to secondary hospital, usual conditions for transport and access, and cultural and ethnic subpopulations. We interviewed 44 women who had given birth up to 24 months before the study began. When asked about their experiences of giving birth in rural communities, many participants spoke of unmet needs and their associated anxieties. Self-identified needs were largely congruent with the deficit categories of Maslow's hierarchy of needs, which recognizes the contingency and interdependence of physiological needs, the need for safety and security, the need for community and belonging, self-esteem needs, and the need for self-actualization. For many women, community was critical to meeting psychosocial needs, and women from communities that currently have (or have recently had) access to local maternity care said that being able to give birth in their own community or in a nearby community was necessary if their obstetric needs were to be met. Removing maternity care from a community creates significant psychosocial consequences that are imperfectly understood but that probably have physiological implications for women, babies, and families. Further research into rural women's maternity care that considers the loss of local maternity care from multiple perspectives is needed.

  2. Where's the LGBT in integrated care research? A systematic review.

    Science.gov (United States)

    Hughes, Rachel L; Damin, Catherine; Heiden-Rootes, Katie

    2017-09-01

    Lesbian, gay, bisexual, and transgender (LGBT) individuals experience more negative health outcomes compared with their heterosexual peers. The health disparities are often related to family and social rejection of the LGBT individuals. Integrated care, and Medical Family Therapy in particular, may aid in addressing the systemic nature of the negative health outcomes. To better understand the current state of the integrated care literature on addressing the health needs of LGBT individuals, a systematic review of the research literature was conducted from January 2000 to January 2016 for articles including integrated health care interventions for LGBT populations. Independent reviewers coded identified articles. Only 8 research articles met criteria for inclusion out of the 2,553 initially identified articles in the search. Results indicated a lack of integrated care research on health care and health needs of LGBT individuals, and none of the articles addressed the use of family or systemic-level interventions. Implications for future research and the need for better education training are discussed. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

  3. Patients living with disabilities: The need for high-quality primary care.

    Science.gov (United States)

    Lofters, Aisha; Guilcher, Sara; Maulkhan, Niraj; Milligan, James; Lee, Joseph

    2016-08-01

    To compare the potential risk factors for lower-quality primary care, the potential markers of unmet needs in primary care, and the willingness to participate in future research among primary care patients with versus without physical disabilities. A waiting room survey using a convenience sample. A family health team (FHT) in Kitchener-Waterloo, Ont, with a designated Mobility Clinic. A total of 40 patients seen at the FHT Mobility Clinic and 80 patients from the general patient population of the same FHT. Socioeconomic status and social capital, number of self-reported emergency department visits and hospitalizations in the preceding year, and willingness of the patients in the 2 groups to participate in future research studies. Patients from the Mobility Clinic were more than twice as likely to be receiving benefits or social assistance (75.0% vs 32.1%, P data for research, 82.5% of Mobility Clinic patients agreed versus 55.0% of those in the general patient population (P = .004). In this study, patients with disabilities were at a social disadvantage compared with their peers without disabilities and were more likely to use the emergency department, suggesting that they had unmet health needs. Future research should continue to explore this patient population and to investigate if an interprofessional primary health care team approach focused on patients with disabilities can help to increase quality of care. Copyright© the College of Family Physicians of Canada.

  4. The Value of Clinical Needs Assessments for Point-of-Care Diagnostics.

    Science.gov (United States)

    Weigl, Bernhard H; Gaydos, Charlotte A; Kost, Gerald; Beyette, Fred R; Sabourin, Stephanie; Rompalo, Anne; de Los Santos, Tala; McMullan, Jason T; Haller, John

    2012-06-01

    Most entrepreneurial ventures fail long before the core technology can be brought to the marketplace because of disconnects in performance and usability measures such as accuracy, cost, complexity, assay stability, and time requirements between technology developers' specifications and needs of the end-users. By going through a clinical needs assessment (CNA) process, developers will gain vital information and a clear focus that will help minimize the risks associated with the development of new technologies available for use within the health care system. This article summarizes best practices of the principal investigators of the National Institute of Biomedical Imaging and Bioengineering point-of-care (POC) centers within the National Institute of Biomedical Imaging and Bioengineering POC Technologies Research Network. Clinical needs assessments are particularly important for product development areas that do not sufficiently benefit from traditional market research, such as grant-funded research and development, new product lines using cutting-edge technologies developed in start-up companies, and products developed through product development partnerships for low-resource settings. The objectives of this article were to (1) highlight the importance of CNAs for development of POC devices, (2) discuss methods applied by POC Technologies Research Network for assessing clinical needs, and (3) provide a road map for future CNAs.

  5. The Value of Clinical Needs Assessments for Point-of-Care Diagnostics

    Science.gov (United States)

    Weigl, Bernhard H.; Gaydos, Charlotte A.; Kost, Gerald; Beyette, Fred R.; Sabourin, Stephanie; Rompalo, Anne; de los Santos, Tala; McMullan, Jason T.; Haller, John

    2013-01-01

    Most entrepreneurial ventures fail long before the core technology can be brought to the marketplace because of disconnects in performance and usability measures such as accuracy, cost, complexity, assay stability, and time requirements between technology developers’ specifications and needs of the end-users. By going through a clinical needs assessment (CNA) process, developers will gain vital information and a clear focus that will help minimize the risks associated with the development of new technologies available for use within the health care system. This article summarizes best practices of the principal investigators of the National Institute of Biomedical Imaging and Bioengineering point-of-care (POC) centers within the National Institute of Biomedical Imaging and Bioengineering POC Technologies Research Network. Clinical needs assessments are particularly important for product development areas that do not sufficiently benefit from traditional market research, such as grant-funded research and development, new product lines using cutting-edge technologies developed in start-up companies, and products developed through product development partnerships for low-resource settings. The objectives of this article were to (1) highlight the importance of CNAs for development of POC devices, (2) discuss methods applied by POC Technologies Research Network for assessing clinical needs, and (3) provide a road map for future CNAs. PMID:23935405

  6. [The future of clinical research: why do we need an ecological approach?].

    Science.gov (United States)

    Liberati, Alessandro; Moja, Lorenzo P; Moschetti, Ivan

    2006-11-01

    In this paper we try to define the future goals of the clinical research, with particular reference to methodological and policy issues. There is an increasing tension between the real drivers of clinical research and its scientific and ethical aims. To consumers the goal is to strengthen the relevance and usefulness of clinical research. This is possible only if consumers are empowered and actively involved. For the health care systems it is mandatory to re-engineer the process, enforcing national and international legislation. This should help to fill the research-clinical practice gap and to balance the research agenda, better reflecting health priorities. Finally the scientific community should reflect on its own conflicts of interests and analyse the causes of the ethical divide between the needs and the market. Scientists too often seem to loose sight of the original cumulative nature of research and of the idea of research as a collective good. More non-commercial research is needed, integrated with the health care systems, to support a transparent, more realistic and valid information useful for patient care, scientific information.

  7. Planning for health care transitions: results from the 2005-2006 National Survey of Children With Special Health Care Needs.

    Science.gov (United States)

    Lotstein, Debra S; Ghandour, Reem; Cash, Amanda; McGuire, Elizabeth; Strickland, Bonnie; Newacheck, Paul

    2009-01-01

    Many youth with special health care needs have difficulties transferring to adult medical care. To address this, the Maternal and Child Health Bureau has made receipt of transition services a core performance outcome for community-based systems of care for youth with special health care needs. In this article we describe the results for the transition core outcome from the 2005-2006 National Survey of Children With Special Health Care Needs. We also describe changes in the measurement strategy for this outcome since the first National Survey of Children With Special Health Care Needs in 2001. In the nationally representative, cross-sectional 2005-2006 National Survey of Children With Special Health Care Needs, parent or guardian respondents of 18198 youth with special health care needs (aged 12-17) were asked if they have had discussions with their child's health care providers about (1) future adult providers, (2) future adult health care needs, (3) changes in health insurance, and (4) encouraging their child to take responsibility for his or her care. All 4 components had to be met for the youth to meet the overall transition core outcome. Those who had not had transition discussions reported if such discussions would have been helpful. Overall, 41% of youth with special health care needs met the core performance outcome for transition. Forty-two percent had discussed shifting care to an adult provider, 62% discussed their child's adult health care needs, and 34% discussed upcoming changes in health insurance. Most (78%) respondents said that providers usually or always encourage their child to take responsibility for his or her health. Non-Hispanic black or Hispanic race/ethnicity, lower income level, not speaking English, and not having a medical home reduced the odds of meeting the transition core outcome. Current performance on the transition core outcome leaves much room for improvement. Many parents feel that having transition-related discussions with their

  8. Adult care transitioning for adolescents with special health care needs: a pivotal role for family centered care.

    Science.gov (United States)

    Duke, Naomi N; Scal, Peter B

    2011-01-01

    To examine the relationship between having a usual source of care, family centered care, and transition counseling for adolescents with special health care needs. Data are from 18,198 parents/guardians, of youth aged 12-17 years, who participated in the 2005-2006 National Survey of Children With Special Health Care Needs. Linear and logistic regression models were used to define relationships between parent report of identification of a usual place and provider of medical care for their child and counseling on four transition issues: transfer to adult providers, review of future health needs, maintaining health insurance in adulthood, and youth taking responsibility for care. The direct mediating effect of family centered care was evaluated. Youth having a usual source of care (vs. not) were more likely to receive counseling on future health needs (47.4 vs. 33.6%, P needs (56.3 vs. 39.6%, P needs and 94.9% of the effect of a usual source of care on encouragement to take responsibility for care. Study findings support the development of health care delivery models focusing on family centered care to the same degree as other health care access issues.

  9. Improving Care for Children With Complex Needs

    Science.gov (United States)

    2017-10-10

    Medically Complex Children; Care Coordination; Case Manager; Care Manager; Collaborative Care; Disease Management; Patient Care Team or Organization; Managed Care; Children With Chronic Conditions; Children With Special Health Care Needs; Shared Care Plan; Patient Care Plan; Health Care and Resource Utilization; Adherence to Care; Functional Status and Productivity; Health Related Quality of Life; Satisfaction With Care; Care Coordinator; Family Experience of Care; Quality Health Care

  10. The care dependency scale for measuring basic human needs: an international comparison.

    Science.gov (United States)

    Dijkstra, Ate; Yönt, Gülendam Hakverdioğlu; Korhan, Esra Akin; Muszalik, Marta; Kędziora-Kornatowska, Kornelia; Suzuki, Mizue

    2012-10-01

    To report a study conducted to compare the utility of the care dependency scale across four countries. The care dependency scale provides a framework for assessing the needs of institutionalized patients for nursing care. Henderson's components of nursing care have been used to specify the variable aspects of the concept of care dependency and to develop the care dependency scale items. The study used a cross-cultural survey design. Patients were recruited from four different countries: Japan, The Netherlands, Poland and Turkey. In each of the participating countries, basic human needs were assessed by nurses using a translated version of the original Dutch care dependency scale. Psychometric properties in terms of reliability and validity of the care dependency scale have been assessed using Cronbach's alpha, Guttman's lambda-2, inter-item correlation and principal components analysis. Data were collected in 2008 and 2009. High internal consistency values were demonstrated. Principal component analysis confirmed the one-factor model reported in earlier studies. Outcomes confirm Henderson's idea that human needs are fundamental appearing in every patient-nurse relationship, independent of the patient's age, the type of care setting and/or cultural background. The psychometric characteristics of the care dependency scale make this instrument very useful for comparative research across countries. © 2012 Blackwell Publishing Ltd.

  11. Health care needs of children with Tourette syndrome.

    Science.gov (United States)

    Bitsko, Rebecca H; Danielson, Melissa; King, Michael; Visser, Susanna N; Scahill, Lawrence; Perou, Ruth

    2013-12-01

    To document the impact of Tourette syndrome on the health care needs of children and access to health care among youth with Tourette syndrome, parent-reported data from the 2007-2008 National Survey of Children's Health were analyzed. Children with Tourette syndrome had more co-occurring mental disorders than children with asthma or children without Tourette syndrome or asthma and had health care needs that were equal to or greater than children with asthma (no Tourette syndrome) or children with neither asthma nor Tourette syndrome. Health care needs were greatest among children with Tourette syndrome and co-occurring mental disorders, and these children were least likely to receive effective care coordination. Addressing co-occurring conditions may improve the health and well-being of children with Tourette syndrome. Strategies such as integration of behavioral health and primary care may be needed to improve care coordination.

  12. Issues in researching leadership in health care organizations.

    Science.gov (United States)

    Simons, Tony; Leroy, Hannes

    2013-01-01

    We provide a review of the research in this volume and suggest avenues for future research. Review of the research in this volume and unstructured interviews with health care executives. We identified the three central themes: (1) trust in leadership, (2) leading by example, and (3) multi-level leadership. For each of these themes, we highlight the shared concerns and findings, and provide commentary about the contribution to the literature on leadership. While relation-oriented leadership is important in health care, there is a danger of too much emphasis on relations in an already caring profession. Moreover, in most health care organizations, leadership is distributed and scholars need to adopt the appropriate methods to investigate these multi-level phenomena. In health care organizations, hands-on leadership, through role modeling, may be necessary to promote change. However, practicing what you preach is not as easy as it may seem. We provide a framework for understanding current research on leadership in health care organizations.

  13. Evaluating managed care's special telecommunications needs.

    Science.gov (United States)

    Harrison, P; Schenk, D

    1993-11-01

    Right now, managed care is a vast cosmic soup. But whether its ultimate form is the result of a bureaucratic big bang or a series of small industry explosions, one thing seems clear: telecommunications is the framework upon which managed care will be built. Managed care's primary players--purchasers, providers and payors--have already discovered the unifying power of telecommunications within their respective worlds. However, as the three worlds collide, an entirely new set of special telecommunications needs arises. And most of these needs can be distilled into three basic requirements: bigger networks, faster networks and smarter networks.

  14. Leadership research in business and health care.

    Science.gov (United States)

    Vance, Connie; Larson, Elaine

    2002-01-01

    To summarize research on leadership in the health care and business literature and to identify the outcomes of leadership on individuals, groups, and organizations. A computerized search and review of research studies was conducted in the health care and business literature from 1970-1999. Studies were categorized and analyzed according to participants, design, primary topic area, and effects or outcomes of leadership. Most of the health care and business literature on leadership consisted of anecdotal or theoretical discussion. Only 4.4% (n = 290) of 6,628 articles reviewed were data-based. Further, the largest proportion of the research (120/290, 41.4%) was purely descriptive of the demographic characteristics or personality traits of leaders. Other studies showed the influence of leadership on subordinates (27.9%). Only 15 (5.2%) of 290 research articles include correlations of qualities or styles of leadership with measurable outcomes on the recipients of services or positive changes in organizations. Research on leadership in the health care and business literature to date has been primarily descriptive. Although work in the social sciences indicates that leadership styles can have a major influence on performance and outcomes, minimal transfer of this work to the health care system is evident. Limited research on leadership and health care outcomes exists, such as changes in patient care or improvements in organizational outputs. In this era of evidence-based practice, such research, although difficult to conduct, is urgently needed.

  15. Learning from a Special Care Dentistry Needs Assessment.

    Science.gov (United States)

    Johnson, Ilona

    2015-05-01

    The General Dental Council recognised special care dentistry (SCD) as a speciality in 2008 and local service reviews have been carried out in order to develop SCD services. A needs assessment was completed to inform the implementation of recommendations from a 2010 review of SCD in Wales. The aim of this paper is to outline the process, findings and learning from the needs assessment and the implications for SCD. A focused needs assessment approach was used. Stakeholder consultations were used to develop a working definition for the needs assessment. Data were collected from existing health and social care sources and analysed using descriptives and geographic information system (GIS) mapping. Data sources for needs assessment were limited. Analysis showed that health conditions were common in the population and increased with age. The majority of people who reported seeing a dentist were seen in general dental practice. Older people with health conditions were less likely to report seeing a dentist. Patients often needed to travel for specialist care services. General dental practice teams have a significant role in caring for SCD patients. Careful planning of specialist care, joint working and enhancing skills across the general practice team will reduce the burden of care and enhance patient safety. Improvements in data for assessment of SCD needs are required to help this process.

  16. Associations of family-centered care with health care outcomes for children with special health care needs.

    Science.gov (United States)

    Kuo, Dennis Z; Bird, T Mac; Tilford, J Mick

    2011-08-01

    The objective of this study is to examine the association of family-centered care (FCC) with specific health care service outcomes for children with special health care needs (CSHCN). The study is a secondary analysis of the 2005-2006 National Survey of Children with Special Health Care Needs. Receipt of FCC was determined by five questions regarding how well health care providers addressed family concerns in the prior 12 months. We measured family burden by reports of delayed health care, unmet need, financial costs, and time devoted to care; health status, by stability of health care needs; and emergency department and outpatient service use. All statistical analyses used propensity score-based matching models to address selection bias. FCC was reported by 65.6% of respondents (N = 38,915). FCC was associated with less delayed health care (AOR: 0.56; 95% CI: 0.48, 0.66), fewer unmet service needs (AOR: 0.53; 95% CI: 0.47, 0.60), reduced odds of ≥1 h/week coordinating care (AOR: 0.83; 95% CI: 0.74, 0.93) and reductions in out of pocket costs (AOR: 0.88; 95% CI: 0.80, 0.96). FCC was associated with more stable health care needs (AOR: 1.11; 95% CI: 1.01, 1.21), reduced odds of emergency room visits (AOR: 0.90; 95% CI: 0.82, 0.99) and increased odds of doctor visits (AOR: 1.25; 95% CI: 1.14, 1.37). Our study demonstrates associations of positive health and family outcomes with FCC. Realizing the health care delivery benefits of FCC may require additional encounters to build key elements of trust and partnership.

  17. Palliative Care Needs Assessment in the Neuro-ICU: Effect on Family.

    Science.gov (United States)

    Creutzfeldt, Claire J; Hanna, Marina G; Cheever, C Sherry; Lele, Abhijit V; Spiekerman, Charles; Engelberg, Ruth A; Curtis, J Randall

    2017-10-01

    Examine the association of a daily palliative care needs checklist on outcomes for family members of patients discharged from the neurosciences intensive care unit (neuro-ICU). We conducted a prospective, longitudinal cohort study in a single, thirty-bed neuro-ICU in a regional comprehensive stroke and level 1 trauma center. One of two neuro-ICU services that admit patients to the same ICU on alternating days used a palliative care needs checklist during morning work rounds. Between March and October, 2015, surveys were mailed to family members of patients discharged from the neuro-ICU. Nearly half of surveys (n = 91, 48.1%) were returned at a median of 4.7 months. At the time of survey completion, mean Modified rankin scale score (mRS) of neuro-ICU patients was 3.1 (SD 2). Overall ratings of quality of care were relatively high (82.2 on a 0-100 scale) with 32% of family members meeting screening criteria for depressive syndrome. The primary outcome measuring family satisfaction, consisting of eight items from the Family Satisfaction in the ICU questionnaire, did not differ significantly between families of patients from either ICU service nor did family ratings of depression (PHQ-8) and post-traumatic stress (PCL-17). Among families of patients discharged from the neuro-ICU, the daily use of a palliative care needs checklist had no measurable effect on family satisfaction scores or long-term psychological outcomes. Further research is needed to identify optimal interventions to meet the palliative care needs specific to family members of patients treated in the neuro-ICU.

  18. Research training needs in Peruvian national TB/HIV programs.

    Science.gov (United States)

    Garcia, Patricia J; Cotrina, Armando; Gotuzzo, Eduardo; Gonzalez, Elsa; Buffardi, Anne L

    2010-09-28

    There are few published reports of research training needs assessments and research training programs. In an effort to expand this nascent field of study and to bridge the gap between research and practice, we sought to systematically assess the research training needs of health care professionals working at Peruvian governmental institutions leading HIV and tuberculosis (TB) control and among senior stakeholders in the field. Six institutional workshops were conducted with the participation of 161 mid-level health professionals from agencies involved in national HIV and TB control. At each workshop informants completed a structured questionnaire and participated in small and large group discussions. Additional data and institutional commitment was obtained through in-depth interviews from 32 senior managers and researchers from the Ministry of Health, academia and NGOs. Participants exhibited an overwhelming receptivity for additional research training, observing a gap between current levels of research training and their perceived importance. Specialized skills in obtaining funding, developing research protocols, particularly in operational, behavioral and prevention research were considered in greatest need. Beyond research training, participants identified broader social, economic and political factors as influential in infectious disease control. The needs assessment suggests that future training should focus on operational research techniques, rather than on clinical skill building or program implementation only. Strengthening health systems not only requires additional research training, but also adequate financial resources to implement research findings.

  19. Informed consent for and regulation of critical care research.

    Science.gov (United States)

    Lemaire, François

    2008-12-01

    Critical care is a special area in which research needs to take place, because of the severity of the diseases which are treated there, but it is also a place where research faces a lot of hurdles and difficulties. The main cause of difficulties is the consent issue, as most patients cannot consent for themselves. Recently, all national legislations in the countries of the European Union have been modified to include the provisions of directive 2001/20. This review article provides a summary of the recent literature concerning the issue of consent for clinical care research such as how the surrogate consent reflects the view of the patient and how time consuming and inaccurate can be the consultation of a community before the start of a trial with a waiver of consent. Another hurdle to research is the rigidity of our legislations concerning clinical research, especially the absence of a simplified way for low or no-risk research. This article shows how this situation is potentially deleterious and how it could ultimately forbid low-risk research. Critical research remains a domain in which research on patients is difficult and controversial. Regulation can be difficult to implement, largely inadequate or uselessly complicated. Intensive care physicians need to keep pressure on politicians and lawmakers to constantly explain the necessity and specificities of critical care research.

  20. Regional variation in identified cancer care needs of early-career oncologists in China, India, and Pakistan.

    Science.gov (United States)

    Lyerly, H Kim; Fawzy, Maria R; Aziz, Zeba; Nair, Reena; Pramesh, C S; Parmar, Vani; Parikh, Purvish M; Jamal, Rozmin; Irumnaz, Azizunissa; Ren, Jun; Stockler, Martin R; Abernethy, Amy P

    2015-05-01

    Cancer incidence and mortality is increasing in the developing world. Inequities between low-, middle-, and high-income countries affect disease burden and the infrastructure needs in response to cancer. We surveyed early-career oncologists attending workshops in clinical research in three countries with emerging economies about their perception of the evolving cancer burden. A cross-sectional survey questionnaire was distributed at clinical trial concept development workshops held in Beijing, Lahore, Karachi, and Mumbai at major hospitals to acquire information regarding home-country health conditions and needs. A total of 100 respondents participated in the workshops held at major hospitals in the region (India = 29, China = 25, Pakistan = 42, and other = 4). Expected consensus on many issues (e.g., emergence of cancer as a significant health issue) was balanced with significant variation in priorities, opportunities, and challenges. Chinese respondents prioritized improvements in cancer-specific care and palliative care, Indian respondents favored improved cancer detection and advancing research in cancer care, and Pakistani respondents prioritized awareness of cancer and improvements in disease detection and cancer care research. For all, the most frequently cited opportunity was help in improving professional cancer education and training. Predominantly early-career oncologists attending clinical research workshops (in China, India, and Pakistan) identified needs for increasing clinical cancer research, professional education, and public awareness of cancer. Decision makers supporting efforts to reduce the burden of cancer worldwide will need to factor the specific needs and aspirations of health care providers in their country in prioritizing health policies and budgets. ©AlphaMed Press.

  1. Why Health Care Needs Design Research

    DEFF Research Database (Denmark)

    Knutz, Eva; Ammentorp, Jette; Kofoed, Poul-Erik

    2015-01-01

    Today's pediatric health care lacks methods to tap into the emotional state of hospitalized pediatric patients (age 4-6 years). The most frequently used approaches were developed for adults and fail to acknowledge the importance of imaginary experiences and the notion of play that may appeal...... of the preliminary tests show that games could serve as a system in which children are willing to express their emotions through play. The results are based on two comparative analyses of the CPgame through which it is possible to identify three different types of players among the patients playing the game...

  2. A pilot survey of post-deployment health care needs in small community-based primary care clinics

    Directory of Open Access Journals (Sweden)

    Pugh Mary J

    2011-07-01

    Full Text Available Abstract Background Relatively little is known regarding to what extent community-based primary care physicians are encountering post-deployment health care needs among veterans of the Afghanistan or Iraq conflicts and their family members. Methods This pilot study conducted a cross-sectional survey of 37 primary care physicians working at small urban and suburban clinics belonging to a practice-based research network in the south central region of Texas. Results Approximately 80% of the responding physicians reported caring for patients who have been deployed to the Afghanistan or Iraq war zones, or had a family member deployed. Although these physicians noted a variety of conditions related to physical trauma, mental illnesses and psychosocial disruptions such as marital, family, financial, and legal problems appeared to be even more prevalent among their previously deployed patients and were also noted among family members of deployed veterans. Conclusions Community-based primary care physicians should be aware of common post-deployment health conditions and the resources that are available to meet these needs.

  3. Care Coordination with Schools: The Role of Family-Centered Care for Children with Special Health Care Needs.

    Science.gov (United States)

    Barnard-Brak, Lucy; Stevens, Tara; Carpenter, Julianna

    2017-05-01

    Objectives Family-centered care has been associated with positive outcomes for children with special health care needs. The purpose of the current study was to examine the relationship of family-centered care as associated with care coordination with schools and school absences (e.g., missed days) as reported by parents of children with special health care needs. Methods The current study utilized data from the National Survey of Children with Special Health Care Needs 2009-201 (N = 40,242) to achieve this purpose. The National Survey of Children with Special Health Care Needs may be considered a nationally-representative and community-based sample of parent responses for children with special health care needs across the United States. Results Results from the current study indicate that family-centered care is associated with fewer absences and improved care coordination with schools when applicable. The variables of functional difficulties, poverty level, and the number of conditions were statistically controlled. Conclusions We suggest that the positive influence of family-centered care when practiced extends beyond the family and interacts with educational outcomes. We also suggest that the role of schools appears to be under-studied given the role that schools can play in family-centered care.

  4. Self-perceived met and unmet care needs of frail older adults in primary care

    NARCIS (Netherlands)

    Hoogendijk, Emiel O; Muntinga, Maaike E; van Leeuwen, Karen M; van der Horst, Henriëtte E; Deeg, Dorly J H; Frijters, Dinnus H M; Hermsen, Lotte A H; Jansen, Aaltje P D; Nijpels, Giel; van Hout, Hein P J

    2013-01-01

    In order to provide adequate care for frail older adults in primary care it is essential to have insight into their care needs. Our aim was to describe the met and unmet care needs as perceived by frail older adults using a multi-dimensional needs assessment, and to explore their associations with

  5. The dire need for primary care specialization in India: Concerns and challenges

    Directory of Open Access Journals (Sweden)

    Nafis Faizi

    2016-01-01

    Full Text Available Primary health care is an evidence-based priority, but it is still inadequately supported in many countries. Ironically, on one hand, India is a popular destination for medical tourism due to the affordability of high quality of health care and, on the other hand, ill health and health care are the main reasons for becoming poor through medical poverty traps. Surprisingly, this is despite the fact that India was committed to 'Health for All by 2000' in the past, and is committed to 'Universal Health Coverage' by 2022! Clearly, these commitments are destined to fail unless something is done to improve the present state of affairs. This study argues for the need to develop primary care as a specialization in India as a remedial measure to reform its health care in order to truly commit to the commitments. Three critical issues for this specialization are discussed in this review: (1 The dynamic and distinct nature of primary care as opposed to other medical specializations, (2 the intersection of primary care and public health which can be facilitated by such a specialization, and (3 research in primary care including the development of screening and referral tools for early diagnosis of cancers, researches for evidence-based interventions via health programs, and primary care epidemiology. Despite the potential challenges and difficulties, India is a country in dire need for primary care specialization. India's experience in providing low-cost and high quality healthcare for medical tourism presages a more cost-effective and efficient primary care with due attention and specialization.

  6. The dire need for primary care specialization in India: Concerns and challenges.

    Science.gov (United States)

    Faizi, Nafis; Khalique, Najam; Ahmad, Anees; Shah, Mohammad Salman

    2016-01-01

    Primary health care is an evidence-based priority, but it is still inadequately supported in many countries. Ironically, on one hand, India is a popular destination for medical tourism due to the affordability of high quality of health care and, on the other hand, ill health and health care are the main reasons for becoming poor through medical poverty traps. Surprisingly, this is despite the fact that India was committed to 'Health for All by 2000' in the past, and is committed to 'Universal Health Coverage' by 2022! Clearly, these commitments are destined to fail unless something is done to improve the present state of affairs. This study argues for the need to develop primary care as a specialization in India as a remedial measure to reform its health care in order to truly commit to the commitments. Three critical issues for this specialization are discussed in this review: (1) The dynamic and distinct nature of primary care as opposed to other medical specializations, (2) the intersection of primary care and public health which can be facilitated by such a specialization, and (3) research in primary care including the development of screening and referral tools for early diagnosis of cancers, researches for evidence-based interventions via health programs, and primary care epidemiology. Despite the potential challenges and difficulties, India is a country in dire need for primary care specialization. India's experience in providing low-cost and high quality healthcare for medical tourism presages a more cost-effective and efficient primary care with due attention and specialization.

  7. Perceived Educational Needs of the Integrated Care Psychiatric Consultant.

    Science.gov (United States)

    Ratzliff, Anna; Norfleet, Kathryn; Chan, Ya-Fen; Raney, Lori; Unützer, Jurgen

    2015-08-01

    With the increased implementation of models that integrate behavioral health with other medical care, there is a need for a workforce of integrated care providers, including psychiatrists, who are trained to deliver mental health care in new ways and meet the needs of a primary care population. However, little is known about the educational needs of psychiatrists in practice delivering integrated care to inform the development of integrated care training experiences. The educational needs of the integrated care team were assessed by surveying psychiatric consultants who work in integrated care. A convenience sample of 52 psychiatrists working in integrated care responded to the survey. The majority of the topics included in the survey were considered educational priorities (>50% of the psychiatrists rated them as essential) for the psychiatric consultant role. Psychiatrists' perspectives on educational priorities for behavioral health providers (BHPs) and primary care providers (PCPs) were also identified. Almost all psychiatrists reported that they provide educational support for PCPs and BHPs (for PCP 92%; for BHP 96%). The information provided in this report suggests likely educational needs of the integrated care psychiatric consultant and provides insight into the learning needs of other integrated care team members. Defining clear priorities related to the three roles of the integrated care psychiatric consultant (clinical consultant, clinical educator, and clinical team leader) will be helpful to inform residency training programs to prepare psychiatrists for work in this emerging field of psychiatry.

  8. Decisional needs assessment of patients with complex care needs in primary care: a participatory systematic mixed studies review protocol.

    Science.gov (United States)

    Bujold, Mathieu; Pluye, Pierre; Légaré, France; Haggerty, Jeannie; Gore, Genevieve C; Sherif, Reem El; Poitras, Marie-Eve; Beaulieu, Marie-Claude; Beaulieu, Marie-Dominique; Bush, Paula L; Couturier, Yves; Débarges, Beatrice; Gagnon, Justin; Giguère, Anik; Grad, Roland; Granikov, Vera; Goulet, Serge; Hudon, Catherine; Kremer, Bernardo; Kröger, Edeltraut; Kudrina, Irina; Lebouché, Bertrand; Loignon, Christine; Lussier, Marie-Therese; Martello, Cristiano; Nguyen, Quynh; Pratt, Rebekah; Rihoux, Benoit; Rosenberg, Ellen; Samson, Isabelle; Senn, Nicolas; Li Tang, David; Tsujimoto, Masashi; Vedel, Isabelle; Ventelou, Bruno; Wensing, Michel

    2017-11-12

    Patients with complex care needs (PCCNs) often suffer from combinations of multiple chronic conditions, mental health problems, drug interactions and social vulnerability, which can lead to healthcare services overuse, underuse or misuse. Typically, PCCNs face interactional issues and unmet decisional needs regarding possible options in a cascade of interrelated decisions involving different stakeholders (themselves, their families, their caregivers, their healthcare practitioners). Gaps in knowledge, values clarification and social support in situations where options need to be deliberated hamper effective decision support interventions. This review aims to (1) assess decisional needs of PCCNs from the perspective of stakeholders, (2) build a taxonomy of these decisional needs and (3) prioritise decisional needs with knowledge users (clinicians, patients and managers). This review will be based on the interprofessional shared decision making (IP-SDM) model and the Ottawa Decision Support Framework. Applying a participatory research approach, we will identify potentially relevant studies through a comprehensive literature search; select relevant ones using eligibility criteria inspired from our previous scoping review on PCCNs; appraise quality using the Mixed Methods Appraisal Tool; conduct a three-step synthesis (sequential exploratory mixed methods design) to build taxonomy of key decisional needs; and integrate these results with those of a parallel PCCNs' qualitative decisional need assessment (semistructured interviews and focus group with stakeholders). This systematic review, together with the qualitative study (approved by the Centre Intégré Universitaire de Santé et Service Sociaux du Saguenay-Lac-Saint-Jean ethical committee), will produce a working taxonomy of key decisional needs (ontological contribution), to inform the subsequent user-centred design of a support tool for addressing PCCNs' decisional needs (practical contribution). We will adapt

  9. Information Needs of Nurse Care Managers

    Science.gov (United States)

    Dorr, David A.; Tran, Hanh; Gorman, Paul; Wilcox, Adam B.

    2006-01-01

    Unmet information needs of physicians and patients are common, but those of nurse care managers – defined as collaborative care planners for with chronic conditions – are less well understood. We taped and transcribed daily activities and conducted semi-structured interviews of 7 care managers, and analyzed questions elicited through this work through a variety of frameworks. PMID:17238532

  10. Child daily care: needs and vulnerabilities from the perspective of adolescent mothers

    Directory of Open Access Journals (Sweden)

    Jaqueline Silva Santos

    2016-12-01

    Full Text Available This study aimed to analyze the care of children from the perspective of adolescent mothers, in order to identify vulnerabilities and needs in the nursing care scope. This is an exploratory research with inductive, qualitative thematic analysis of the data, based on recorded interviews with 20 adolescent mothers of children between six months and under two years old, registered and assisted by Family Health teams of the municipality of Passos, Minas Gerais, Brazil. The maternal reports express aspects about the daily care of the child, attention to their needs, coping with difficulties and recognition of vulnerable situations. Maternal care in adolescence was a unique experience, with maternal reports that point out aspects to be more explored by healthcare professionals, especially by nursing, in search of support offer and enhance maternal trust.

  11. Strategic Planning for Research in Pediatric Critical Care.

    Science.gov (United States)

    Tamburro, Robert F; Jenkins, Tammara L; Kochanek, Patrick M

    2016-11-01

    To summarize the scientific priorities and potential future research directions for pediatric critical care research discussed by a panel of experts at the inaugural Strategic Planning Conference of the Pediatric Trauma and Critical Illness Branch of the Eunice Kennedy Shriver National Institute of Child Health and Human Development. Expert opinion expressed during the Strategic Planning Conference. Not applicable. Chaired by an experienced expert from the field, issues relevant to the conduct of pediatric critical care research were discussed and debated by the invited participants. Common themes and suggested priorities were identified and coalesced. Of the many pathophysiologic conditions discussed, the multiple organ dysfunction syndrome emerged as a topic in need of more study that is most relevant to the field. Additionally, the experts offered that the interrelationship and impact of critical illness on child development and family functioning are important research priorities. Consequently, long-term outcomes research was encouraged. The expert group also suggested that multidisciplinary conferences are needed to help identify key knowledge gaps to advance and direct research in the field. The Pediatric Critical Care and Trauma Scientist Development National K12 Program and the Collaborative Pediatric Critical Care Research Network were recognized as successful and important programs supported by the branch. The development of core data resources including biorepositories with robust phenotypic data using common data elements was also suggested to foster data sharing among investigators and to enhance disease diagnosis and discovery. Multicenter clinical trials and innovative study designs to address understudied and poorly understood conditions were considered important for field advancement. Finally, the growth of the pediatric critical care research workforce was offered as a priority that could be spawned in many ways including by expanded

  12. Child Care and the Family-Work Balance: An International Perspective on Needs and Responses in Aboriginal Communities.

    Science.gov (United States)

    Colbert, Judith A.

    1999-01-01

    Suggests that aboriginal child-care needs relate to educational, social, and cultural requirements, as well as parental workforce participation. Contends that research is needed to test the validity of findings from mainstream societies when applied to indigenous communities. Presents examples of child-care problems and solutions to needs from…

  13. Patients' Care Needs: Documentation Analysis in General Hospitals.

    Science.gov (United States)

    Paans, Wolter; Müller-Staub, Maria

    2015-10-01

    The purpose of the study is (a) to describe care needs derived from records of patients in Dutch hospitals, and (b) to evaluate whether nurses employed the NANDA-I classification to formulate patients' care needs. A stratified cross-sectional random-sampling nursing documentation audit was conducted employing the D-Catch instrument in 10 hospitals comprising 37 wards. The most prevalent nursing diagnoses were acute pain, nausea, fatigue, and risk for impaired skin integrity. Most care needs were determined in physiological health patterns and few in psychosocial patterns. To perform effective interventions leading to high-quality nursing-sensitive outcomes, nurses should also diagnose patients' care needs in the health management, value-belief, and coping stress patterns. © 2014 NANDA International, Inc.

  14. Research training needs in Peruvian national TB/HIV programs

    Science.gov (United States)

    2010-01-01

    Background There are few published reports of research training needs assessments and research training programs. In an effort to expand this nascent field of study and to bridge the gap between research and practice, we sought to systematically assess the research training needs of health care professionals working at Peruvian governmental institutions leading HIV and tuberculosis (TB) control and among senior stakeholders in the field. Methods Six institutional workshops were conducted with the participation of 161 mid-level health professionals from agencies involved in national HIV and TB control. At each workshop informants completed a structured questionnaire and participated in small and large group discussions. Additional data and institutional commitment was obtained through in-depth interviews from 32 senior managers and researchers from the Ministry of Health, academia and NGOs. Results Participants exhibited an overwhelming receptivity for additional research training, observing a gap between current levels of research training and their perceived importance. Specialized skills in obtaining funding, developing research protocols, particularly in operational, behavioral and prevention research were considered in greatest need. Beyond research training, participants identified broader social, economic and political factors as influential in infectious disease control. Conclusions The needs assessment suggests that future training should focus on operational research techniques, rather than on clinical skill building or program implementation only. Strengthening health systems not only requires additional research training, but also adequate financial resources to implement research findings. PMID:20875140

  15. Research training needs in Peruvian national TB/HIV programs

    Directory of Open Access Journals (Sweden)

    Gonzalez Elsa

    2010-09-01

    Full Text Available Abstract Background There are few published reports of research training needs assessments and research training programs. In an effort to expand this nascent field of study and to bridge the gap between research and practice, we sought to systematically assess the research training needs of health care professionals working at Peruvian governmental institutions leading HIV and tuberculosis (TB control and among senior stakeholders in the field. Methods Six institutional workshops were conducted with the participation of 161 mid-level health professionals from agencies involved in national HIV and TB control. At each workshop informants completed a structured questionnaire and participated in small and large group discussions. Additional data and institutional commitment was obtained through in-depth interviews from 32 senior managers and researchers from the Ministry of Health, academia and NGOs. Results Participants exhibited an overwhelming receptivity for additional research training, observing a gap between current levels of research training and their perceived importance. Specialized skills in obtaining funding, developing research protocols, particularly in operational, behavioral and prevention research were considered in greatest need. Beyond research training, participants identified broader social, economic and political factors as influential in infectious disease control. Conclusions The needs assessment suggests that future training should focus on operational research techniques, rather than on clinical skill building or program implementation only. Strengthening health systems not only requires additional research training, but also adequate financial resources to implement research findings.

  16. Primary care patients with anxiety and depression: need for care from the patient's perspective.

    NARCIS (Netherlands)

    Prins, M.A.; Verhaak, P.F.M.; Meer, K. van der; Penninx, B.W.J.H.; Bensing, J.M.

    2009-01-01

    Many anxiety and depression patients receive no care, resulting in unnecessary suffering and high costs. Specific beliefs and the absence of a perceived need for care are major reasons for not receiving care. This study aims to determine the specific perceived need for care in primary care patients

  17. Relationship between home care service use and changes in the care needs level of Japanese elderly.

    Science.gov (United States)

    Kato, Gohei; Tamiya, Nanako; Kashiwagi, Masayo; Sato, Mikiya; Takahashi, Hideto

    2009-12-21

    With the introduction of long-term care insurance (LTCI) in Japan, more home care services are available for the community-dwelling elderly. To deliver effective home care services, it is important to know the effects of service use. In this study, as the first step to determine this, we sought to describe different home service use in the sustained/improved group and deteriorated group in their care needs levels, and to report the relationship between the use of home care services and changes in care needs levels. The participants included 624 of a total of 1,474 users of LTCI services in one city in Japan. Home care service users were stratified into a 'lower care needs level subgroup' and a 'higher care needs level subgroup' based on the baseline care needs level. Simple statistical comparison and multiple logistic regression analyses in which the change in care needs level was set as a dependent variable were performed. Gender, age, and baseline care needs level were designated as control variables. Home based services were treated as independent variables. In this study, home care services consisted of home help, home bathing services, a visiting nurse, home rehabilitation, nursing home daycare, health daycare, loan of medical devices, respite stay in a nursing home, respite stay in a health care facility, respite stay in a sanatorium-type medical care facility, and medical management by a physician. In the lower care needs level subgroup, age (OR = 1.04, CI, 1.01-1.08), use of respite stay in a nursing home (OR = 2.55; CI, 1.43-4.56), and the number of types of long-term care services (OR = 1.33; CI, 1.02-1.74) used during an 11 month period were significantly related to a deterioration of the user's care needs level. In the higher care needs level subgroup, use of medical management by a physician (OR = 6.99; CI, 1.42-41.25) was significantly related to a deterioration of the user's care needs level. There were no home based services significantly related to

  18. Patients' experiences and care needs during the diagnostic phase of an Integrated Brain Cancer Pathway

    DEFF Research Database (Denmark)

    Vedelø, Tina Wang; Sørensen, Jens Christian Hedemann; Delmar, Charlotte

    2018-01-01

    of brain cancer, not knowing what to expect and participants' perceptions of the relationship with the health care providers. The analysis revealed that participants were in risk of having unmet information needs and that contextual factors seemed to cause fragmented care that led to feelings...... that the shock of the diagnosis, combined with the multiple symptoms, affect patients' ability to understand information and express needs of care and support. Unmet needs have been reported within this group of patients, however, the experiences and care needs of patients going through the diagnostic phase...... of a standardised Integrated Brain Cancer Pathway have not previously been explored. DESIGN: A Case Study design was used to provide detailed information of the complex needs of patients being diagnosed with a malignant brain tumour. METHODS: Research interviews and direct participant observation of four patients...

  19. Children--The Effect of Rural Residence on Dental Unmet Need for Children with Special Health Care Needs

    Science.gov (United States)

    Skinner, Asheley Cockrell; Slifkin, Rebecca T.; Mayer, Michelle L.

    2006-01-01

    Background: Unmet need for dental care is the most prevalent unmet health care need among children with special health care needs (CSHCN), even though these children are at a greater risk for dental problems. The combination of rural residence and special health care needs may leave rural CSHCN particularly vulnerable to high levels of unmet…

  20. Chilean midwives and midwifery students' views of women's midlife health-care needs.

    Science.gov (United States)

    Binfa, Lorena; Pantoja, Loreto; Gonzalez, Hilda; Ransjö-Arvidson, Anna-Berit; Robertson, Eva

    2011-08-01

    to determine Chilean midwives' views with regard to Chilean women's health-care needs in midlife. The aim was also to explore Chilean midwifery students' views on the clinical care provided to women in midlife. a qualitative study using focus group discussions and narratives which were analysed using thematic manifest and latent content analysis. 10 different primary health care (PHC) centres in Santiago, Chile. 22 midwives, working in PHC clinics and 13 (n = 13) midwifery students with PHC clinical experience, attending their fourth or fifth year of midwifery education at the School of Midwifery in Santiago. the midwives felt that women in midlife have special health-care service needs. They also considered themselves to be the most appropriate health staff to provide health care for women in midlife, but recognised that they lacked competence in attending psychological and social health-care needs of women in midlife such as violence, abuse and sexuality issues. The midwifery students remarked that many midwives focused their attention on fulfilling the biomedical requirements. Even if the midwives had knowledge about recent research on menopause, they had difficulties in approaching this issue and including it in their counselling. Some students also questioned the sometimes disrespectful attitude shown, especially towards Peruvian immigrants and women with psychosocial problems. the findings suggest that midwives need more education about women's health-care needs in midlife, and that more focus should be placed on the psychosocial aspects of midwifery. More reflections about the quality of the client-provider relationship in clinical practice are needed. Gender issues, the structure of power relationships, and empowerment should be incorporated and critically discussed during midwifery education and training, and also in clinics. Copyright © 2010 Elsevier Ltd. All rights reserved.

  1. Primary care patients with anxiety and depression : Need for care from the patient's perspective

    NARCIS (Netherlands)

    Prins, Marijn A.; Verhaak, Peter F. M.; van der Meer, Klaas; Penninx, Brenda W. J. H.; Bensing, Jozien M.

    2009-01-01

    Background: Many anxiety and depression patients receive no care, resulting in unnecessary suffering and high costs. Specific beliefs and the absence of a perceived need for care are major reasons for not receiving care. This study aims to determine the specific perceived need for care in primary

  2. Care of the Child with Special Health Care Needs: A Report on 2 ...

    African Journals Online (AJOL)

    Care of the child with special health care needs is gradually becoming a significant public health issue. To identify what these special health care needs are in our environment, 2 children presenting with clinical features of Duchenne Muscular Dystrophy were studied. This crippling neuromuscular disorder has no cure at ...

  3. Late-life depression: systematic assessment of care needs as a basis for treatment

    NARCIS (Netherlands)

    Houtjes, W.; van Meijel, B.; Deeg, D.J.H.; Beekman, A.T.F.

    2012-01-01

    Research shows that most of the variance in depression severity levels in late life can be explained by the unmet psychological needs of patients, more in particular the care needs of patients related with psychological distress. This case report describes the treatment of an 84-year-old patient

  4. Late-life depression: systematic assessment of care needs as a basis for treatment

    NARCIS (Netherlands)

    W. Houtjes; D.J.H. Deeg; prof Berno van Meijel

    2011-01-01

    Research shows that most of the variance in depression severity levels in late life can be explained by the unmet psychological needs of patients, more in particular the care needs of patients related with psychological distress. This case report describes the treatment of an 84-year-old patient

  5. Understanding palliative care on the heart failure care team: an innovative research methodology.

    Science.gov (United States)

    Lingard, Lorelei A; McDougall, Allan; Schulz, Valerie; Shadd, Joshua; Marshall, Denise; Strachan, Patricia H; Tait, Glendon R; Arnold, J Malcolm; Kimel, Gil

    2013-05-01

    There is a growing call to integrate palliative care for patients with advanced heart failure (HF). However, the knowledge to inform integration efforts comes largely from interview and survey research with individual patients and providers. This work has been critically important in raising awareness of the need for integration, but it is insufficient to inform solutions that must be enacted not by isolated individuals but by complex care teams. Research methods are urgently required to support systematic exploration of the experiences of patients with HF, family caregivers, and health care providers as they interact as a care team. To design a research methodology that can support systematic exploration of the experiences of patients with HF, caregivers, and health care providers as they interact as a care team. This article describes in detail a methodology that we have piloted and are currently using in a multisite study of HF care teams. We describe three aspects of the methodology: the theoretical framework, an innovative sampling strategy, and an iterative system of data collection and analysis that incorporates four data sources and four analytical steps. We anticipate that this innovative methodology will support groundbreaking research in both HF care and other team settings in which palliative integration efforts are emerging for patients with advanced nonmalignant disease. Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

  6. Staff awareness of food and fluid care needs for older people with dementia in residential care: A qualitative study.

    Science.gov (United States)

    Lea, Emma J; Goldberg, Lynette R; Price, Andrea D; Tierney, Laura T; McInerney, Fran

    2017-12-01

    To examine awareness of aged care home staff regarding daily food and fluid care needs of older people with dementia. Older people in residential care frequently are malnourished, and many have dementia. Staff knowledge of the food and fluid needs of people with dementia is limited. Qualitative research on this topic is scarce but can provide insight into how nutrition and hydration care may be improved. Qualitative, interview-based study. Eleven staff in a range of positions at one care home were interviewed regarding their perceptions of current and potential food/fluid care practices. Transcripts were coded and analysed thematically. Key food and fluid issues reported by these staff members were weight loss and malnutrition, chewing and swallowing difficulties (dysphagia), and inadequate hydration. Staff identified a number of current care practices that they felt to be effective in facilitating older people's food and fluid intake, including responsiveness to their needs. Staff suggestions to facilitate food and fluid intake centred on improved composition and timing of meals, enhanced physical and social eating environment, and increased hydration opportunities. Staff commented on factors that may prevent changes to care practices, particularly the part-time workforce, and proposed changes to overcome such barriers. Staff were aware of key food and fluid issues experienced by the older people in their care and of a range of beneficial care practices, but lacked knowledge of many promising care practices and/or how to implement such practices. Staff need to be supported to build on their existing knowledge around effective food and fluid care practices. The numerous ideas staff expressed for changing care practices can be leveraged by facilitating staff networking to work and learn together to implement evidence-based change. © 2017 John Wiley & Sons Ltd.

  7. HIV, violence and women: unmet mental health care needs.

    Science.gov (United States)

    Zunner, Brian; Dworkin, Shari L; Neylan, Thomas C; Bukusi, Elizabeth A; Oyaro, Patrick; Cohen, Craig R; Abwok, Matilda; Meffert, Susan M

    2015-03-15

    HIV-infected (HIV+) women have high rates of Gender Based Violence (GBV). Studies of GBV find that approximately 50-90% of survivors develop mood and anxiety disorders. Given that women in sub-Saharan African constitute the largest population of HIV+ individuals in the world and the region׳s high GBV prevalence, mental health research with HIV+ women affected by GBV (HIV+GBV+) in this region is urgently needed. Qualitative methods were used to evaluate the mental health care needs of HIV+GBV+ female patients at an HIV clinic in the Kisumu County, Kenya. Thirty in-depth interviews and four focus groups were conducted with patients, healthcare providers and community leaders. Interviews were transcribed, translated and analyzed using qualitative data software. Respondents stated that physical, sexual and emotional violence against HIV+ women was widely prevalent and perpetrated primarily by untested husbands accusing a wife of marital infidelity following her positive HIV test result. Mental health problems among HIV+GBV+ women included depressive, anxiety, traumatic stress symptoms and suicidal thoughts. Participants opined that emotional distress from GBV not only caused HIV treatment default, but also led to poor HIV health even if adherent. Respondents agreed that mental health treatment was needed for HIV+GBV+ women; most agreed that the best treatment modality was individual counseling delivered weekly at the HIV clinic. Emotional distress may be higher and/or more varied among HIV+GBV+ women who are not engaged in HIV care. Mental health care is needed and desired by HIV+GBV+ women in Kisumu County, Kenya. Copyright © 2014 Elsevier B.V. All rights reserved.

  8. Differences in Health Care Needs, Health Care Utilization, and Health Care Outcomes Among Children With Special Health Care Needs in Ohio: A Comparative Analysis Between Medicaid and Private Insurance.

    Science.gov (United States)

    Sarkar, Madhurima; Earley, Elizabeth R; Asti, Lindsey; Chisolm, Deena J

    This study explores comparative differentials in health care needs, health care utilization, and health status between Medicaid and private/employer-sponsored insurance (ESI) among a statewide population of children with special health care needs (CSHCN) in Ohio. We used data from the 2012 Ohio Medicaid Assessment Survey to examine CSHCN's health care needs, utilization, status, and health outcomes by insurance type. Adjusted multivariable logistic regression models were used to explore associations between public and private health insurance, as well as the utilization and health outcome variables. Bivariate analyses indicate that the Medicaid population had higher care coordination needs (odds ratio [OR] = 1.6; 95% confidence interval [CI], 1.1-2.2) as well as need for mental/educational health care services (OR = 1.5; 95% CI; 1.1-2.0). They also reported higher unmet dental care needs (OR = 2.2; 95% CI, 1.2-4.0), higher emergency department (ED) utilization (OR = 2.3; 95% CI, 1.7-3.2), and worse overall health (OR = 0.6; 95% CI, 0.4-0.7), oral health (OR = 0.4; 95% CI, 0.3-0.5), and vision health (OR = 0.4; 95% CI, 0.2-0.6). After controlling for demographic variables, CSHCN with Medicaid insurance coverage were more likely to need mental health and education services (adjusted odds ratio [AOR] = 1.8; 95% CI; 1.2-2.6), had significantly more ED visits (AOR = 2.3; 95% CI, 1.5-3.5), and were less likely to have excellent overall health (AOR = 0.64; 95% CI, 0.4-0.9), oral health (AOR = 0.43; 95% CI, 0.3-0.7), and vision health (AOR = 0.38; 95% CI, 0.2-0.6) than those with private insurance/ESI. The CSHCN population is a highly vulnerable population. While Ohio's Medicaid provides greater coverage to CSHCN, disparities continue to exist within access and services that Medicaid provides versus the ones provided by private insurance/ESI.

  9. The Role of Care Coordinator for Children with Complex Care Needs: A Systematic Review

    Science.gov (United States)

    Hillis, Rowan; Larkin, Philip J; Cawley, Des; Connolly, Michael

    2016-01-01

    Introduction: This systematic review seeks to identify the intended components of the role of care coordinator for children with complex care needs and the factors that determine its composition in practice. Theory and methods: The initial search identified 1,157 articles, of which 37 met the inclusion criteria. They were quality assessed using the SIGN hierarchy of evidence structure. Results: Core components of the role include: coordination of care needs, planning and assessment, specialist support, emotional support, administration and logistics and continuing professional development. Influencing factors on the role include the external environment (political and socio-economic), the internal environment (organisational structure and funding protocols), the skills, qualifications and experience of the coordinator, the family circumstances and the nature of the interaction between the care coordinator and the family. Discussion: The lack of consistent terminology creates challenges and there is a need for greater consensus on this issue. Organisations and healthcare professionals need to recognise the extent to which contextual factors influence the role of a care coordinator in practice and plan accordingly. Despite evidence that suggests that the role is pivotal in ensuring that care needs are sustained, there remains great variability in the understanding of the role of a care coordinator for this population. Conclusions: As the provision of care increasingly moves closer to home there is a need for greater understanding of the nature and composition of the interaction between care coordinators and families to determine the extent to which appropriate services are being provided. Further work in this area should take into consideration any potential variance in service provision, for example any potential inequity arising due to geographic location. It is also imperative, where appropriate, to seek the views of children with complex care needs and their

  10. The Role of Care Coordinator for Children with Complex Care Needs: A Systematic Review

    Directory of Open Access Journals (Sweden)

    Rowan Hillis

    2016-05-01

    Full Text Available Introduction: This systematic review seeks to identify the intended components of the role of care coordinator for children with complex care needs and the factors that determine its composition in practice. Theory and methods: The initial search identified 1,157 articles, of which 37 met the inclusion criteria. They were quality assessed using the SIGN hierarchy of evidence structure. Results: Core components of the role include: coordination of care needs, planning and assessment, specialist support, emotional support, administration and logistics and continuing professional development. Influencing factors on the role include the external environment (political and socio-economic, the internal environment (organisational structure and funding protocols, the skills, qualifications and experience of the coordinator, the family circumstances and the nature of the interaction between the care coordinator and the family. Discussion: The lack of consistent terminology creates challenges and there is a need for greater consensus on this issue. Organisations and healthcare professionals need to recognise the extent to which contextual factors influence the role of a care coordinator in practice and plan accordingly. Despite evidence that suggests that the role is pivotal in ensuring that care needs are sustained, there remains great variability in the understanding of the role of a care coordinator for this population. Conclusions: As the provision of care increasingly moves closer to home there is a need for greater understanding of the nature and composition of the interaction between care coordinators and families to determine the extent to which appropriate services are being provided. Further work in this area should take into consideration any potential variance in service provision, for example any potential inequity arising due to geographic location. It is also imperative, where appropriate, to seek the views of children with complex care

  11. The third person in the room: The needs of care partners of older people in home care services-A systematic review from a person-centred perspective.

    Science.gov (United States)

    Anker-Hansen, Camilla; Skovdahl, Kirsti; McCormack, Brendan; Tønnessen, Siri

    2018-04-01

    To identify and synthesise the needs of care partners of older people living at home with assistance from home care services. "Ageing in place" is a promoted concept where care partners and home care services play significant roles. Identifying the needs of care partners and finding systematic ways of meeting them can help care partners to cope with their role. This study is based on the PRISMA reporting guidelines. The systematic review of qualitative and quantitative studies was guided by the Joanna Briggs Institute methodology. In total, 16 studies were included in the review, eleven qualitative and five quantitative. Three main categories were revealed in the analysis: the need for quality interaction, the need for a shared approach to care and the need to feel empowered. Care partners of older people have several, continuously unmet needs. A person-centred perspective can contribute new understandings of how to meet these needs. A knowledge gap has been identified regarding the needs of care partners of older people with mental health problems. There is a need to develop a tool for systematic collaboration between home care services and care partners, so that the identified needs can be met in a more thorough, systematic and person-centred way. The carers in home care services need competence to identify and meet the needs of care partners. The implementation of person-centred values in home care services can contribute to meet the needs of care partners to a greater extent than today. Future research on the needs of care partners of older people with mental health problems needs to be undertaken. © 2017 John Wiley & Sons Ltd.

  12. Development of the parental needs scale for rare diseases: a tool for measuring the supportive care needs of parents caring for a child with a rare disease

    Directory of Open Access Journals (Sweden)

    Pelentsov LJ

    2016-09-01

    Full Text Available Lemuel J Pelentsov,1 Andrea L Fielder,2,3 Thomas A Laws,4 Adrian J Esterman1,2,5 1School of Nursing and Midwifery, 2Sansom Institute for Health Research, 3School of Pharmacy and Medical Sciences, University of South Australia, Adelaide, SA, Australia; 4School of Nursing and Midwifery, Faculty of Health, Keele University, Staffordshire, UK; 5Australian Institute for Health and Tropical Medicine, James Cook University, Cairns, QLD, Australia Background: Children and families affected by rare diseases have received scant consideration from the medical, scientific, and political communities, with parents’ needs especially having received little attention. Affected parents often have limited access to information and support and appropriate health care services. While scales to measure the needs of parents of children with chronic illnesses have been developed, there have been no previous attempts to develop a scale to assess the needs of parents of children with rare diseases. Objective: To develop a scale for measuring the supportive care needs of parents of children with rare diseases. Method: A total of 301 responses to our Parental Needs Survey were randomly divided into two halves, one for exploratory factor analysis and the other for confirmatory factor analysis (CFA. After removing unsuitable items, exploratory factor analysis was undertaken to determine the factor structure of the data. CFA using structural equation modeling was then undertaken to confirm the factor structure. Results: Seventy-two items were entered into the CFA, with a scree plot showing a likely four-factor solution. The results provided four independent subscales of parental needs: Understanding the disease (four items; Working with health professionals (four items; Emotional issues (three items; and Financial needs (three items. The structural equation modeling confirmed the suitability of the four-factor solution and demonstrated that the four subscales could be added

  13. UNMET NEEDS FOR HEALTH CARE SERVICES IN BULGARIA

    Directory of Open Access Journals (Sweden)

    Elka Atanasova

    2016-09-01

    Full Text Available Background: In all European countries, an important policy objective is the equity of access to health care. The factors that affect access to health care can differ as the demand- and supply-side factors. Moreover, there are many tools to assess the extent of inequity in access to services. One simple tool is the assessing reports of unmet needs for health care. Purpose: The study has two objectives: to examine the evidence of self-reported unmet needs and to analyze the relationship between foregone medical care and both type of residence and socioeconomic status. Materials and Methods: We use data from the European Union Statistics on Income and Living Conditions. The access to health care is measured using the concept of unmet need for medical examination or treatment during the last 12 months. The relationship between foregone medical care and both type of residence and socioeconomic status is examined through the representative survey conducted in 2014. Results: The Eurostat results show that treatment costs are the most common reason for foregone medical care in Bulgaria. We observe a gradual decrease in the share of people who reported having unmet needs due to being too expensive. According to the 2014 survey, significant differences between urban and rural areas as well as among the income groups are identified. The results show the problems in access to health care services mainly in small towns and villages. Conclusion: Although major essential changes were made in the Bulgarian health care system, the equity problems remain an important challenge to policy-makers.

  14. Care for children with special health care needs in a managed care system: a patient satisfaction survey.

    Science.gov (United States)

    Flynn, J M; Bravo, C J; Reyes, O

    2001-09-01

    In 1994 the government of Puerto Rico adopted a capitated managed health care system for the medically indigent. The new law has been implemented in most municipalities. A survey of children with special health care needs treated at a tertiary pediatric center under the capitated managed care system and the prior non-capitated system was analyzed using the Consumer Assessments of Health Plan Survey (CHAPS) instrument. One third of the patients who were under the new capitated managed care system were not satisfied with the medial care they were receiving. The parents of children with multidisciplinary conditions found it much more difficult to access care at the tertiary center. It took parents two years to learn to navigate within the capitated managed care system. Studies to measure outcome and health quality of children with special health care needs in capitated managed health care programs must be developed to learn how the potential benefits of managed care can be maximized and the potential harms minimized. The purpose of this study was to analyze the accessibility and satisfaction of caretakers of children with special health care needs under a capitated managed health care system.

  15. Perceived unmet need and barriers to care amongst street-involved people who use illicit drugs.

    Science.gov (United States)

    Hyshka, Elaine; Anderson, Jalene Tayler; Wild, T Cameron

    2017-05-01

    Research on perceived unmet need for care for mental health and substance use problems focuses on general populations to the detriment of hidden populations. This study describes prevalence and correlates of perceived unmet need for care in a community-based sample of street-involved people who use illicit drugs and identifies barriers to care. A sample of 320 street-involved people who use drugs participated in a structured, interviewer-assisted survey in Edmonton, Canada. The survey included the Perceived Need for Care Questionnaire, which assessed unmet need for care for mental health and substance use problems across seven service types. Logistic regression examined the associations between perceived unmet need, extent of socioeconomic marginalisation and problem severity. Barriers underlying unmet service needs were also examined. Most (82%) participants reported unmet need for one or more services during the past year. Odds of reporting one or more unmet needs were elevated amongst participants reporting substantial housing instability (adjusted odds ratio = 2.37; 95% confidence interval 1.19-4.28) and amongst participants meeting criteria for drug dependence (adjusted odds ratio = 1.22; 95% confidence interval 1.03-1.50), even after adjustment for sociodemographic covariates. Structural, rather than motivational barriers were the most commonly reported reasons underlying unmet service needs. Street-involved people who use drugs experience very high rates of perceived unmet need for care for mental health and substance use problems. General population studies on perceived unmet need are insufficient for understanding needs and barriers to care in hidden populations.[Hyshka E, Anderson JT, Wild TC. Perceived unmet need and barriers to care amongst street-involved people who use illicit drugs. Drug Alcohol Rev 2017;36:295-304]. © 2016 Australasian Professional Society on Alcohol and other Drugs.

  16. School outcomes of children with special health care needs.

    Science.gov (United States)

    Forrest, Christopher B; Bevans, Katherine B; Riley, Anne W; Crespo, Richard; Louis, Thomas A

    2011-08-01

    To examine the associations between having a special health care need and school outcomes measured as attendance, student engagement, behavioral threats to achievement, and academic achievement. A total of 1457 children in the fourth through sixth grades from 34 schools in 3 school districts and their parents provided survey data; parents completed the Children With Special Health Care Needs Screener. School records were abstracted for attendance, grades, and standardized achievement test scores. Across 34 schools, 33% of children screened positive for special health care needs. After adjusting for sociodemographic and school effects, children with special health care needs had lower motivation to do well in school, more disruptive behaviors, and more frequent experiences as a bully victim. They experienced significantly lower academic achievement, as measured by grades, standardized testing, and parental-assessed academic performance. These findings were observed for children who qualified as having a special health care need because they had functional limitations attributed to a chronic illness or a behavioral health problem but not for those who qualified only because they took prescription medications. Specific subgroups of children with special health care needs are at increased risk for poor school outcomes. Health and school professionals will need to collaborate to identify these children early, intervene with appropriate medical and educational services, and monitor long-term outcomes.

  17. School Outcomes of Children With Special Health Care Needs

    Science.gov (United States)

    Bevans, Katherine B.; Riley, Anne W.; Crespo, Richard; Louis, Thomas A.

    2011-01-01

    OBJECTIVE: To examine the associations between having a special health care need and school outcomes measured as attendance, student engagement, behavioral threats to achievement, and academic achievement. PARTICIPANTS AND METHODS: A total of 1457 children in the fourth through sixth grades from 34 schools in 3 school districts and their parents provided survey data; parents completed the Children With Special Health Care Needs Screener. School records were abstracted for attendance, grades, and standardized achievement test scores. RESULTS: Across 34 schools, 33% of children screened positive for special health care needs. After adjusting for sociodemographic and school effects, children with special health care needs had lower motivation to do well in school, more disruptive behaviors, and more frequent experiences as a bully victim. They experienced significantly lower academic achievement, as measured by grades, standardized testing, and parental-assessed academic performance. These findings were observed for children who qualified as having a special health care need because they had functional limitations attributed to a chronic illness or a behavioral health problem but not for those who qualified only because they took prescription medications. CONCLUSIONS: Specific subgroups of children with special health care needs are at increased risk for poor school outcomes. Health and school professionals will need to collaborate to identify these children early, intervene with appropriate medical and educational services, and monitor long-term outcomes. PMID:21788226

  18. Current status of palliative care--clinical implementation, education, and research.

    Science.gov (United States)

    Grant, Marcia; Elk, Ronit; Ferrell, Betty; Morrison, R Sean; von Gunten, Charles F

    2009-01-01

    Palliative and end-of-life care is changing in the United States. This dynamic field is improving care for patients with serious and life-threatening cancer through creation of national guidelines for quality care, multidisciplinary educational offerings, research endeavors, and resources made available to clinicians. Barriers to implementing quality palliative care across cancer populations include a rapidly expanding population of older adults who will need cancer care and a decrease in the workforce available to give care. Methods of integrating current palliative care knowledge into care of patients include multidisciplinary national education and research endeavors, and clinician resources. Acceptance of palliative care as a recognized medical specialty provides a valuable resource for improvement of care. Although compilation of evidence for the importance of palliative care specialities is in its initial stages, national research grants have provided support to build the knowledge necessary for appropriate palliative care. Opportunities are available to clinicians for understanding and applying appropriate palliative and end-of-life care to patients with serious and life-threatening cancers. (c) 2009 American Cancer Society, Inc.

  19. Self-perceived health care needs and delivery of health care services 5 years after moderate-to-severe traumatic brain injury.

    Science.gov (United States)

    Andelic, Nada; Soberg, Helene L; Berntsen, Svein; Sigurdardottir, Solrun; Roe, Cecilie

    2014-11-01

    To describe the self-perceived health care needs of patients with moderate-to-severe traumatic brain injury (TBI) and to assess the impact of the functional level at 1 year after injury on patients' unmet needs at the 5-year follow-up. A prospective follow-up study. Clinical research. A total of 93 patients participated in the 5-year follow-up. We registered demographic and injury-related data at the time of admission and the scores for the Disability Rating Scale, Glasgow Outcome Scale-Extended, and Short Form 36 subscales for physical functioning and mental health at 1 and 5 years. The patients' self-perceived health care needs and use of health care services at 5 years were the main outcome measurements. At the 5-year follow-up, 70% of patients reported at least 1 perceived need. The self-perceived health care needs were met for 39% of the patients. The patients with unmet needs (n = 29 [31%]) reported frequent needs in emotional (65%), vocational (62%), and cognitive (58%) domains. These patients were significantly more likely to present a less severe disability on the Disability Rating Scale at the 1-year follow-up (odds ratio [OR] 0.11 [95% confidence interval {CI}, 0.02-0.7]; P = .02). Worse mental health at the 1-year follow-up and a younger age (16-29 years) largely predicted unmet needs at the 5-year follow-up (OR 3.28 [95% CI, 1.1-10.04], P = .04; and OR 4.93 [95% CI, 0.16-15.2], P = .005, respectively). Gaps between self-perceived health care needs and health care services received at the 5-year follow-up were found. An important message to clinicians who provide health care services in the late TBI phase is that they should be aware of patients' long-term needs regarding cognitive and emotional difficulties. Of equal importance is an emphasis on long-term vocational rehabilitation services. To ensure the appropriateness of health care service delivery, health care services after TBI should be better targeted at less-severe TBI population as well

  20. Establishment and preliminary outcomes of a palliative care research network.

    Science.gov (United States)

    Hudson, Peter; Street, Annette; Graham, Suzanne; Aranda, Sanchia; O'Connor, Margaret; Thomas, Kristina; Jackson, Kate; Spruyt, Odette; Ugalde, Anna; Philip, Jennifer

    2016-02-01

    The difficulties in conducting palliative care research have been widely acknowledged. In order to generate the evidence needed to underpin palliative care provision, collaborative research is considered essential. Prior to formalizing the development of a research network for the state of Victoria, Australia, a preliminary study was undertaken to ascertain interest and recommendations for the design of such a collaboration. Three data-collection strategies were used: a cross-sectional questionnaire, interviews, and workshops. The questionnaire was completed by multidisciplinary palliative care specialists from across the state (n = 61); interviews were conducted with senior clinicians and academics (n = 21) followed by two stakeholder workshops (n = 29). The questionnaire was constructed specifically for this study, measuring involvement of and perceptions of palliative care research. Both the interview and the questionnaire data demonstrated strong support for a palliative care research network and aided in establishing a research agenda. The stakeholder workshops assisted with strategies for the formation of the Palliative Care Research Network Victoria (PCRNV) and guided the development of the mission and strategic plan. The research and efforts to date to establish the PCRNV are encouraging and provide optimism for the evolution of palliative care research in Australia. The international implications are highlighted.

  1. Sociodemographic disparities associated with perceived causes of unmet need for mental health care.

    Science.gov (United States)

    Alang, Sirry M

    2015-12-01

    Mental disorders are among the leading causes of disability in the United States. In 2011, over 10 million adults felt that even though they needed treatment for mental health problems, they received insufficient or no mental health care and reported unmet need. This article assesses associations between sociodemographic characteristics and perceived causes of unmet needs for mental health care. A sample of 2,564 adults with unmet mental health need was obtained from the National Survey on Drug Use and Health. Outcome variables were 5 main reasons for unmet need: cost, stigma, minimization, low perceived treatment effectiveness, and structural barriers. Each cause of unmet need was regressed on sociodemographic, health, and service use characteristics. Women had higher odds of cost-related reasons for unmet need than men. Odds of stigma and structural barriers were greater among Blacks than Whites, and among rural than metropolitan residents. Compared with the uninsured, insured persons were less likely to report cost barriers. However, insured persons had higher odds of stigma and minimization of mental disorders. Insurance alone is unlikely to resolve the problem of unmet need. Understanding the social epidemiology of perceived unmet need will help identify populations at risk of not receiving mental health care or insufficient care. Focusing on specific programs and services that are designed to address the causes of perceived unmet need in particular populations is important. Future research should explore how intersecting social statuses affect the likelihood of perceived unmet need. (c) 2015 APA, all rights reserved).

  2. Does using the interRAI Palliative Care instrument reduce the needs and symptoms of nursing home residents receiving palliative care?

    Science.gov (United States)

    Hermans, Kirsten; De Almeida Mello, Johanna; Spruytte, Nele; Cohen, Joachim; Van Audenhove, Chantal; Declercq, Anja

    2018-02-01

    This study aimed to evaluate whether using the interRAI Palliative Care instrument (the interRAI PC) in nursing homes is associated with reduced needs and symptoms in residents nearing the end of their lives. A quasi-experimental pretest-posttest study using the Palliative care Outcome Scale (POS) was conducted to compare the needs and symptoms of residents nearing the end of their lives in the control and intervention nursing homes. Care professionals at the intervention nursing homes filled out the interRAI PC over the course of a year for all residents aged 65 years and older who were nearing the end of their lives. This intervention was not implemented in the control nursing homes. At baseline, POS scores in the intervention nursing homes were lower (more favorable) than in the control nursing homes on the items "pain", "other symptoms", "family anxiety", and the total POS score. Posttest POS scores for "wasted time" were higher (less favorable) than pretest scores in the intervention nursing homes. In the intervention nursing homes where care professionals did not have prior experience with the interRAI Long-Term Care Facilities (LTCF) assessment instrument (n = 8/15), total POS scores were lower (more favorable) at posttest. One year after introducing the interRAI PC, no reduction in residents' needs and symptoms were detected in the intervention nursing homes. However, reductions in needs and symptoms were found in the subgroup of intervention nursing homes without prior experience with the interRAI LTCF instrument. This may suggest that the use of an interRAI instrument other than the interRAI PC specifically can improve care. Future research should aim at replicating this research with a long-term design in order to evaluate the effect of integrating the use of the interRAI PC in the day-to-day practices at nursing homes.

  3. Caring for Life-Limiting Illness in Ethiopia: A Mixed-Methods Assessment of Outpatient Palliative Care Needs.

    Science.gov (United States)

    Reid, Eleanor Anderson; Gudina, Esayas Kebede; Ayers, Nicola; Tigineh, Wondimagegnu; Azmera, Yoseph Mamo

    2018-05-01

    Palliative care aims to reduce physical suffering and the emotional, spiritual, and psychosocial distress of life-limiting illness. Palliative care is a human right, yet there are vast disparities in its provision: of the 40 million people globally in need of palliative care, less than 10% receive it, largely in high-income countries. There is a particular paucity of data on palliative care needs across the spectrum of incurable disease in Ethiopia. The aims of this research were to assess the overall burden of life-limiting illness, the costs associated with life-limiting illness, and barriers to accessing palliative care in Ethiopia. Mixed-methods case-series. One hundred adults (mean age: 43.7 ± 14 years, 64% female) were recruited at three outpatient clinics (oncology, HIV, noncommunicable disease) and hospice patient homes in Ethiopia. Four internationally validated questionnaires were used to assess physical symptoms, psychosocial distress, and disability. In-depth interviews gauged poverty level, costs of care, and end-of-life preferences. Qualitative data were analyzed by thematic content, quantitative data by standard descriptive, frequency and regression analyses. In oncology, 95.5% of the population endorsed moderate or severe pain, while 24% were not prescribed analgesia. Importantly, 80% of the noncommunicable disease population reported moderate or severe pain. The mean psychosocial distress score was 6.4/10. Severe disability was reported in 26% of the population, with mobility most affected. Statistically significant relationships were found between pain and costs, and pain and lack of well-being. Very high costs were reported by oncology patients. Oncology withstanding, the majority of subjects wished to die at home. Oncology patients cited pain control as the top reason they preferred a hospital death. There are extensive unmet palliative care needs in Ethiopia. Untreated pain and high costs of illness are the major contributors to

  4. Capturing information needs of care providers to support knowledge sharing and distributed decision making.

    Science.gov (United States)

    Rogers, M; Zach, L; An, Y; Dalrymple, P

    2012-01-01

    This paper reports on work carried out to elicit information needs at a trans-disciplinary, nurse-managed health care clinic that serves a medically disadvantaged urban population. The trans-disciplinary model provides a "one-stop shop" for patients who can receive a wide range of services beyond traditional primary care. However, this model of health care presents knowledge sharing challenges because little is known about how data collected from the non-traditional services can be integrated into the traditional electronic medical record (EMR) and shared with other care providers. There is also little known about how health information technology (HIT) can be used to support the workflow in such a practice. The objective of this case study was to identify the information needs of care providers in order to inform the design of HIT to support knowledge sharing and distributed decision making. A participatory design approach is presented as a successful technique to specify requirements for HIT applications that can support a trans-disciplinary model of care. Using this design approach, the researchers identified the information needs of care providers working at the clinic and suggested HIT improvements to integrate non-traditional information into the EMR. These modifications allow knowledge sharing among care providers and support better health decisions. We have identified information needs of care providers as they are relevant to the design of health information systems. As new technology is designed and integrated into various workflows it is clear that understanding information needs is crucial to acceptance of that technology.

  5. Unmet health care needs for persons with environmental sensitivity

    OpenAIRE

    Gibson, Pamela Reed; Kovach, Shannon; Lupfer, Alexis

    2015-01-01

    Pamela Reed Gibson, Shannon Kovach, Alexis LupferDepartment of Psychology, James Madison University, Harrisonburg, VA, USAAbstract: Studies of unmet health care needs have shown that women, people with poor health, and people with lower socioeconomic status are more likely to report having unmet health care needs. In this study, we examined the types of and reasons for unmet health care needs in 465 people with environmental sensitivities. A second area of inquiry involved negative reactions ...

  6. Children in foster care: what forensic nurses need to know.

    Science.gov (United States)

    Hornor, Gail

    2014-01-01

    Children living in foster care are a unique population with specialized healthcare needs. This article will assist forensic nurses and advanced practice forensic nurses, particularly those working in pediatrics, in understanding the needs of children in foster care and implementing a practice plan to better meet their healthcare needs. To that end, a basic understanding of the foster care system is crucial and involves an appreciation of the interface between the legal system and the child welfare system. Most important to providing care to children in foster care is a true understanding of trauma exposure and its potential effects on the lives of children: physically, developmentally, emotionally, and psychologically. This article will assist forensic nurses working with pediatric populations to more fully understand the needs of children in foster care and to develop innovative interventions to appropriately meet their unique needs.

  7. Introducing Pharmaceutical Care to Primary Care in Iceland—An Action Research Study

    Directory of Open Access Journals (Sweden)

    Anna Bryndis Blondal

    2017-04-01

    . Pharmacist’s access to medical records is necessary for optimal service. Pharmacist-led clinical service was deemed most needed in dose dispensing polypharmacy patients. This research indicated that it was essential to introduce Icelandic GPs to the potential contribution of pharmacists in patient care and that action research was a useful methodology to promote and develop a relationship between those two health care providers in primary care in Iceland.

  8. Palliative care for homeless people: a systematic review of the concerns, care needs and preferences, and the barriers and facilitators for providing palliative care.

    Science.gov (United States)

    Klop, Hanna T; de Veer, Anke J E; van Dongen, Sophie I; Francke, Anneke L; Rietjens, Judith A C; Onwuteaka-Philipsen, Bregje D

    2018-04-24

    Homeless people often suffer from complex and chronic comorbidities, have high rates of morbidity and die at much younger ages than the general population. Due to a complex combination of physical, psychosocial and addiction problems at the end of life, they often have limited access to palliative care. Both the homeless and healthcare providers experience a lot of barriers. Therefore, providing palliative care that fits the needs and concerns of the homeless is a challenge to healthcare providers. This systematic review aims to summarize evidence about the concerns, palliative care needs and preferences of homeless people, as well as barriers and facilitators for delivering high quality palliative care. PubMed, Embase, PsycINFO, CINAHL and Web of Science were searched up to 10 May 2016. Included were studies about homeless people with a short life expectancy, their palliative care needs and the palliative care provided, that were conducted in Western countries. Data were independently extracted by two researchers using a predefined extraction form. Quality was assessed using a Critical Appraisal instrument. The systematic literature review was based on the PRISMA statement. Twenty-seven publications from 23 different studies met the inclusion criteria; 15 studies were qualitative and eight were quantitative. Concerns of the homeless often related to end-of-life care not being a priority, drug dependence hindering adequate care, limited insight into their condition and little support from family and relatives. Barriers and facilitators often concerned the attitude of healthcare professionals towards homeless people. A respectful approach and respect for dignity proved to be important in good quality palliative care. A patient-centred, flexible and low-threshold approach embodying awareness of the concerns of homeless people is needed so that appropriate palliative care can be provided timely. Training, education and experience of professionals can help to

  9. African Americans' and Hispanics' information needs about cancer care.

    Science.gov (United States)

    Muñoz-Antonia, Teresita; Ung, Danielle; Montiel-Ishino, F Alejandro; Nelson, Alison; Canales, Jorge; Quinn, Gwendolyn P

    2015-06-01

    Few studies have reported on African American and Hispanic (AA and H) populations' informational needs when seeking cancer care at an institution that offers clinical trials. Moffitt Cancer Center (MCC) sought to identify and examine the decision making process, the perceptions, and the preferred channels of communication about cancer care services for AA and H communities in order to develop a list of marketing recommendations. Five focus groups (N = 45) consisting of two AA and three H were conducted in four counties of the MCC catchment area in Tampa, FL. Participants were asked about their perceptions, knowledge, attitudes, and beliefs about cancer care and MCC. Focus groups were audio-recorded and verbatim transcripts were analyzed using content analysis. Similarities in responses were found between AA and H participants. Participants received general health and cancer information from media sources and word of mouth and preferred to hear patient testimonials. There were concerns about costs, insurance coverage, and the actual geographic location of the cancer center. In general, H participants were not opposed to participating in cancer clinical trials/research, whereas, AA participants were more hesitant. A majority of participants highly favored an institution that offered standard care and clinical trials. AA and H participants shared similar concerns and preferences in communication channels, but each group had specific informational needs. The perceptions and preferences of AA and H must be explored in order to successfully and efficiently increase cancer clinical trial participation.

  10. A tertiary care-primary care partnership model for medically complex and fragile children and youth with special health care needs.

    Science.gov (United States)

    Gordon, John B; Colby, Holly H; Bartelt, Tera; Jablonski, Debra; Krauthoefer, Mary L; Havens, Peter

    2007-10-01

    To evaluate the impact of a tertiary care center special needs program that partners with families and primary care physicians to ensure seamless inpatient and outpatient care and assist in providing medical homes. Up to 3 years of preenrollment and postenrollment data were compared for patients in the special needs program from July 1, 2002, through June 30, 2005. A tertiary care center pediatric hospital and medical school serving urban and rural patients. A total of 227 of 230 medically complex and fragile children and youth with special needs who had a wide range of chronic disorders and were enrolled in the special needs program. Care coordination provided by a special needs program pediatric nurse case manager with or without a special needs program physician. Preenrollment and postenrollment tertiary care center resource utilization, charges, and payments. A statistically significant decrease was found in the number of hospitalizations, number of hospital days, and tertiary care center charges and payments, and an increase was found in the use of outpatient services. Aggregate data revealed a decrease in hospital days from 7926 to 3831, an increase in clinic visits from 3150 to 5420, and a decrease in tertiary care center payments of $10.7 million. The special needs program budget for fiscal year 2005 had a deficit of $400,000. This tertiary care-primary care partnership model improved health care and reduced costs with relatively modest institutional support.

  11. The voice of postsurgical lung cancer patients regarding supportive care needs

    Directory of Open Access Journals (Sweden)

    Hoffman AJ

    2014-04-01

    Full Text Available Amy J Hoffman,1 Ruth Ann Brintnall,2 Alexander von Eye,3 Julie Cooper,2 Jean K Brown41College of Nursing, Michigan State University, East Lansing, MI, USA; 2Kirkhof College of Nursing, Grand Valley State University, Grand Rapids, MI, USA; 3Psychology Department, Michigan State University, East Lansing, MI, USA; 4School of Nursing, State University of New York at Buffalo, Buffalo, NY, USAObjective: Individuals with lung cancer present with multiple comorbid conditions and complex treatment plans. They are frequently vulnerable during critical transitions in the cancer survivorship trajectory. Limited research exists on the postsurgical non-small-cell lung cancer (NSCLC population, relative to unmet supportive care needs. However, what is known is that the lung cancer population reports significantly more unmet supportive care needs than other cancer populations. The purpose of this study was to identify the postsurgical NSCLC patients’ unmet supportive care needs during transition from hospital to home and through recovery after participating in a 16-week exercise intervention.Materials and methods: Participants were 53–73 years of age with NSCLC (stage Ib-IIIa and participated in a 16-week light-intensity exercise program after hospital discharge. For this study, participants were interviewed 12-18 months post-thoracotomy. A qualitative design was used, incorporating a semistructured guide with open-ended questions to support discussion regarding recovery experiences through 16 weeks after transitioning from hospital to home. The interview was transcribed verbatim, and data were analyzed using content analysis. Content themes were independently coded by investigators and later combined into a single report verified through participant verification of the report.Results: Participants reviewed and agreed with the focus group report. Dominant themes included: 1 unpreparedness for post-thoracotomy recovery; 2 significant unmet needs upon

  12. Primary care research in Denmark

    DEFF Research Database (Denmark)

    Vedsted, Peter; Kallestrup, Per

    2016-01-01

    International Perspectives on Primary Care Research examines how the evidence base from primary care research can strengthen health care services and delivery, tackle the growing burden of disease, improve quality and safety, and increase a person-centred focus to health care. Demonstrating...... the inter-professional nature of the discipline, the book also features a section on cross-nation organisations and primary care networks supporting research. National perspectives are offered from researchers in 20 countries that form part of the World Organization of Family Doctors, providing case...... histories from research-rich to resource-poor nations that illustrate the range of research development and capacity building. This book argues the importance of primary care research, especially to policy makers, decision makers and funders in informing best practice, training primary health care providers...

  13. Using research to transform care for women veterans: advancing the research agenda and enhancing research-clinical partnerships.

    Science.gov (United States)

    Yano, Elizabeth M; Bastian, Lori A; Bean-Mayberry, Bevanne; Eisen, Seth; Frayne, Susan; Hayes, Patricia; Klap, Ruth; Lipson, Linda; Mattocks, Kristin; McGlynn, Geraldine; Sadler, Anne; Schnurr, Paula; Washington, Donna L

    2011-01-01

    The purpose of this paper is to report on the outcomes of the 2010 VA Women's Health Services Research Conference, which brought together investigators interested in pursuing research on women veterans and women in the military with leaders in women's health care delivery and policy within and outside the VA, to significantly advance the state and future direction of VA women's health research and its potential impacts on practice and policy. Building on priorities assembled in the previous VA research agenda (2004) and the research conducted in the intervening six years, we used an array of approaches to foster research-clinical partnerships that integrated the state-of-the-science with the informational and strategic needs of senior policy and practice leaders. With demonstrated leadership commitment and support, broad field-based participation, strong interagency collaboration and a push to accelerate the move from observational to interventional and implementation research, the Conference provided a vital venue for establishing the foundation for a new research agenda. In this paper, we provide the historical evolution of the emergence of women veterans' health services research and an overview of the research in the intervening years since the first VA women's health research agenda. We then present the resulting VA Women's Health Research Agenda priorities and supporting activities designed to transform care for women veterans in six broad areas of study, including access to care and rural health; primary care and prevention; mental health; post deployment health; complex chronic conditions, aging and long-term care; and reproductive health. Published by Elsevier Inc.

  14. UNMET NEED IN TURKEY: HOME CARE SERVICE

    Directory of Open Access Journals (Sweden)

    Nuket SUBASI

    2006-02-01

    Full Text Available Home care services can be provided as an alternative to institutional care to people, in case of their demand, who need care because of aging and chronic diseases. Structured home care service in health system does not exist in Turkey. Relatives try to provide care at home to those people. In this cross-sectional study, household was selected as a sampling unit, determining prevalence of home care at the households and gathering some information about home care in Cankaya district of Ankara was intended. It was found that in one-month period before this study was carried out, home care services were provided at 8.7% of the households in Cankaya district. 62.5% of people who received home care service were women, 15.3% of them were belonging to 65-74 age group; 31.7% of those were illiterate and 12.5% had no social and health insurance. Among people, 15.4% were receiving home care after surgical operation, 15.4% were receiving care because of stroke and cerebrovascular diseases and 9.6% were cancer patients. 81.7% of adults who were taken care at home were found to be dependent at different levels while performing daily living activities, the most common treatment method was detected as oral medication (81.4%. These people were in need of preventive, curative and rehabilitative and supportive services. A home care service model, which takes into consideration the social characteristics of the country, should be developed at this district where there is a large elderly population. [TAF Prev Med Bull 2006; 5(1.000: 19-31

  15. Examining the need assessment process by identifying the need profiles of elderly care recipients in the Ten-year Long-Term Care Project (TLTCP) of Taiwan.

    Science.gov (United States)

    Liu, Li-Fan; Yao, Hui-Ping

    2014-12-01

    To deal with the increasing long-term care (LTC) needs of elderly people in Taiwan, the government launched the Ten-year Long-term Care Project (TLTCP) in 2007, and through the care management system, care plans for those in need were distributed and implemented by care managers according to the single assessment process. Based on the emphasis of linking the right need assessment to the care plan, this study aimed to explore the need profiles of LTC recipients with regard to their health indicators to serve as a validity check on the identified dependency levels and care plans in the current care management system. A model based on latent class analysis (LCA) was used for dealing with the issue of health heterogeneity. LCA provides an empirical method that examines the interrelationships among health indicators and characterizes the underlying set of mutually exclusive latent classes that account for the observed indicators. The analysis included a total of 2901 elderly care recipients in the LTC dataset from a southern city, 1 of the 5 major metropolitan areas in Taiwan. The identified dependency levels of the samples and their care plans in need assessment were compared and discussed. Four need profiles were explored in the LTC dataset. Apart from the low (LD) (32.95%) and moderate dependent groups (MD) (17.48%), there were 2 groups identified among the high-dependency levels, including the severe physical and psychological dependency (SPP) (26.37%) and the comorbidities and severe dependency (CSD) groups (23.20%), which in sum were approximately identified as high dependency (HD) by care managers in the LTC dataset. In addition, the CSD group currently costs more for their care plans on average in LTC services (NT. 277,081.15, approximately 9200 USD) than the SPP group (NT. 244,084.21) and the other groups. Need assessment is a key to success in care management in LTC. The results of this study showed the importance of focusing on multifacet indicators

  16. How do GPs identify a need for palliative care in their patients? An interview study.

    NARCIS (Netherlands)

    Claessen, S.J.J.; Francke, A.L.; Engels, Y.; Deliens, L.

    2013-01-01

    Background: Little is known about how GPs determine whether and when patients need palliative care. Little research has been done regarding the assumption underpinning Lynn and Adamson’s model that palliative care may start early in the course of the disease. This study was conducted to explore how

  17. Research needs

    International Nuclear Information System (INIS)

    Anon.

    1993-01-01

    Research needs were identified during working sessions for several potential separation options. These options include sequestering agents, solvent extraction, membranes, solid sorbents, novel approaches, organic separation and destruction methods, and radiation and chemical stability of separation materials

  18. Shaping the future: a primary care research and development strategy for Scotland.

    Science.gov (United States)

    Hannaford, P; Hunt, J; Sullivan, F; Wyke, S

    1999-09-01

    Primary care is at the centre of the National Health Service (NHS) in Scotland; however, its R & D capacity is insufficiently developed. R&D is a potentially powerful way of improving the health and well-being of the population, and of securing high quality care for those who need it. In order to achieve this, any Scottish strategy for primary care R&D should aim to develop both a knowledge-based service and a research culture in primary care. In this way, decisions will be made based upon best available evidence, whatever the context. Building on existing practice and resources within primary care research, this strategy for achieving a thriving research culture in Scottish primary care has three key components: A Scottish School of Primary Care which will stimulate and co-ordinate a cohesive programme of research and training. A comprehensive system of funding for training and career development which will ensure access to a range of research training which will ensure that Scotland secures effective leadership for its primary care R&D. Designated research and development practices (DRDPs) which will build on the work of existing research practices, in the context of Local Health Care Co-operatives (LHCCs) and Primary Care Trusts (PCTs), to create a co-operative environment in which a range of primary care professionals can work together to improve their personal and teams' research skills, and to support research development in their areas. A modest investment will create substantial increases in both the quality and quantity of research being undertaken in primary care. This investment should be targeted at both existing primary care professionals working in service settings in primary care, LHCCs and PCTs, and at centres of excellence (including University departments). A dual approach will foster collaboration and will allow existing centres of excellence both to undertake more primary care research and to support the development of service based primary care

  19. Health care needs assessment among adolescents in correctional institutions in Zambia: an ethical analysis.

    Science.gov (United States)

    Kumwenda, Maureen; Nzala, Selestine; Zulu, Joseph M

    2017-08-22

    While health care needs assessments have been conducted among juveniles or adolescents by researchers in developed countries, assessments using an ethics framework particularly in developing countries are lacking. We analysed the health care needs among adolescents at the Nakambala Correctional Institution in Zambia, using the Beauchamp and Childress ethics framework. The ethics approach facilitated analysis of moral injustices or dilemmas triggered by health care needs at the individual (adolescent) level. The research team utilized 35 in-depth interviews with juveniles, 6 key informant interviews and 2 focus group discussions to collect data. We analysed the data using thematic analysis. The use of three sources of data facilitated triangulation of data. Common health problems included HIV/AIDS, STIs, flu, diarrhoea, rashes, and malaria. Although there are some health promotion strategies at the Nakambala Approved School, the respondents classified the health care system as inadequate. The unfavourable social context which included clouded rooms and lack of adolescent health friendly services unfairly exposed adolescents to several health risks and behaviours thus undermining the ethics principle of social justice. In addition, the limited prioritisation of adolescent centres by the stakeholders and erratic funding also worsened injustices by weakening the health care system. Whereas the inadequate medical and drug supplies, shortage of health workers in the nearby health facilities and weak referral systems excluded the juveniles from enjoying maximum health benefits thus undermining adolescents' wellbeing or beneficence. Inadequate medical and drug supplies as well as non-availability of adolescent friendly health services at the nearest health facility did not only affect social justice and beneficence ethics principles but also threatened juveniles' privacy, liberty and confidentiality as well as autonomy with regard to health service utilisation

  20. Unmet health care needs for persons with environmental sensitivity

    Directory of Open Access Journals (Sweden)

    Gibson PR

    2015-01-01

    Full Text Available Pamela Reed Gibson, Shannon Kovach, Alexis LupferDepartment of Psychology, James Madison University, Harrisonburg, VA, USAAbstract: Studies of unmet health care needs have shown that women, people with poor health, and people with lower socioeconomic status are more likely to report having unmet health care needs. In this study, we examined the types of and reasons for unmet health care needs in 465 people with environmental sensitivities. A second area of inquiry involved negative reactions to general anesthesia. Results showed that the most common barriers to receiving care were the inability to find a provider who understands environmental sensitivities and a lack of accessibility due to chemical and electromagnetic exposures in health care environments. Lower income and poorer health (longer illness, a worsening or fluctuating course of illness, and a higher level of disability were significantly correlated with the total number of reported unmet health care needs. Some people with environmental sensitivities reported having negative reactions to anesthesia of long duration; most common were nausea and vomiting, fatigue, and reduced cognitive ability.Keywords: environmental sensitivity, chemical sensitivity, electrohypersensitivity, chemical hypersensitivity, chemical intolerance, contested illness

  1. [Community coordination of dental care needs in a home medical care support ward and at home].

    Science.gov (United States)

    Sumi, Yasunori; Ozawa, Nobuyoshi; Miura, Hiroko; Miura, Hisayuki; Toba, Kenji

    2011-01-01

    The purpose of this study was to ascertain the current statuses and problems of dental home care patients by surveying the oral care status and needs of patients in the home medical care support ward at the National Center for Geriatrics and Gerontology. Patients that required continuous oral management even after discharge from the hospital were referred to local dental clinics to receive home dental care. We investigated the suitability and problems associated with such care, and identified the dental care needs of home patients and the status of local care coordination, including those in hospitals. The subjects were 82 patients. We ascertained their general condition and oral status, and also investigated the problems associated with patients judged to need specialized oral care by a dentist during oral treatment. Patients who required continuous specialized oral care after discharge from hospital were referred to dental clinics that could provide regular care, and the problems at the time of referral were identified. Dry mouth was reported by many patients. A large number of patients also needed specialized dental treatment such as the removal of dental calculus or tooth extraction. Problems were seen in oral function, with 38 of the patients (46%) unable to gargle and 23 (28%) unable to hold their mouths open. About half of the patients also had dementia, and communication with these patients was difficult. Of the 43 patients who were judged to need continuing oral care after discharge from hospital, their referral to a dental clinic for regular care was successful for 22 (51%) patients and unsuccessful for 21 (49%) patients. The reasons for unsuccessful referrals included the fact that the family, patient, nurse, or caregiver did not understand the need for specialized oral care. The present results suggest the need for specialized oral treatment in home medical care. These findings also suggest that coordinating seamless dental care among primary physicians

  2. A Gap Analysis Needs Assessment Tool to Drive a Care Delivery and Research Agenda for Integration of Care and Sharing of Best Practices Across a Health System.

    Science.gov (United States)

    Golden, Sherita Hill; Hager, Daniel; Gould, Lois J; Mathioudakis, Nestoras; Pronovost, Peter J

    2017-01-01

    In a complex health system, it is important to establish a systematic and data-driven approach to identifying needs. The Diabetes Clinical Community (DCC) of Johns Hopkins Medicine's Armstrong Institute for Patient Safety and Quality developed a gap analysis tool and process to establish the system's current state of inpatient diabetes care. The collectively developed tool assessed the following areas: program infrastructure; protocols, policies, and order sets; patient and health care professional education; and automated data access. For the purposes of this analysis, gaps were defined as those instances in which local resources, infrastructure, or processes demonstrated a variance against the current national evidence base or institutionally defined best practices. Following the gap analysis, members of the DCC, in collaboration with health system leadership, met to identify priority areas in order to integrate and synergize diabetes care resources and efforts to enhance quality and reduce disparities in care across the system. Key gaps in care identified included lack of standardized glucose management policies, lack of standardized training of health care professionals in inpatient diabetes management, and lack of access to automated data collection and analysis. These results were used to gain resources to support collaborative diabetes health system initiatives and to successfully obtain federal research funding to develop and pilot a pragmatic diabetes educational intervention. At a health system level, the summary format of this gap analysis tool is an effective method to clearly identify disparities in care to focus efforts and resources to improve care delivery. Copyright © 2016 The Joint Commission. Published by Elsevier Inc. All rights reserved.

  3. Towards efficient use of research resources: a nationwide database of ongoing primary care research projects in the Netherlands.

    Science.gov (United States)

    Kortekaas, Marlous F; van de Pol, Alma C; van der Horst, Henriëtte E; Burgers, Jako S; Slort, Willemjan; de Wit, Niek J

    2014-04-01

    PURPOSE. Although in the last decades primary care research has evolved with great success, there is a growing need to prioritize the topics given the limited resources available. Therefore, we constructed a nationwide database of ongoing primary care research projects in the Netherlands, and we assessed if the distribution of research topics matched with primary care practice. We conducted a survey among the main primary care research centres in the Netherlands and gathered details of all ongoing primary care research projects. We classified the projects according to research topic, relation to professional guidelines and knowledge deficits, collaborative partners and funding source. Subsequently, we compared the frequency distribution of clinical topics of research projects to the prevalence of problems in primary care practice. We identified 296 ongoing primary care research projects from 11 research centres. Most projects were designed as randomized controlled trial (35%) or observational cohort (34%), and government funded mostly (60%). Thematically, most research projects addressed chronic diseases, mainly cardiovascular risk management (8%), depressive disorders (8%) and diabetes mellitus (7%). One-fifth of the projects was related to defined knowledge deficits in primary care guidelines. From a clinical primary care perspective, research projects on dermatological problems were significantly underrepresented (P = 0.01). This survey of ongoing projects demonstrates that primary care research has a firm basis in the Netherlands, with a strong focus on chronic disease. The fit with primary care practice can improve, and future research should address knowledge deficits in professional guidelines more.

  4. Ethnonursing: A Qualitative Research Method for Studying Culturally Competent Care across Disciplines

    Directory of Open Access Journals (Sweden)

    Marilyn R. McFarland PhD, RN, FNP-BC, CTN

    2012-07-01

    Full Text Available Nurse anthropologist, Madeleine Leininger, developed the culture care theory and ethnonursing research method to help researchers study transcultural human care phenomena and discover the knowledge nurses need to provide care in an increasingly multicultural world. The authors propose that the ethnonursing method can be useful for research that addresses providing care in other disciplines, including education, administration, physical, occupational, and speech therapy, social work, pharmacy, medicine, and other disciplines in which research findings have implications for human care and health. The authors discuss the culture care theory and describe the ethnonursing research method's enablers, data analysis phases, and qualitative evaluation criteria. The theory is presented as a guide for using research findings to design culturally competent and congruent care to promote well-being among diverse people, groups, communities, and institutions. Resources include a reference list of key source publications, a discussion of exemplar studies, and samples of a theory-based, open-ended interview guide and data coding system.

  5. Psychosocial Needs and Facilitators of Mothers Caring for Children with Duchenne/Becker Muscular Dystrophy.

    Science.gov (United States)

    Peay, Holly L; Meiser, Bettina; Kinnett, Kathleen; Tibben, Aad

    2018-02-01

    Care guidelines for Duchenne/Becker muscular dystrophy (DBMD) include recommendations for assessment of caregivers of patients with DBMD followed by proactive psychosocial interventions. To inform clinical assessment, this study described appraisals of psychosocial needs and caregiving facilitators of mothers of individuals with DBMD. Two hundred and five mothers completed an online survey. More than 50% endorsed unmet needs for managing uncertainty about the future and managing DBMD fears. Higher levels of unmet need were associated with less disease progression/earlier stage of DBMD (rho = -0.166 p = 0.02). Twenty-one percent regularly used respite care and 57% worried about allowing others to care for their child. Highly-endorsed care facilitators included partner relationships (63%), child's approach to life (59%), and family relationships (49%). Our findings highlight the importance of psychological and social support for caregivers. Starting when children are young, clinicians should assess caregivers' unmet psychological needs, particularly uncertainty and fear. Exploring needs and facilitators may allow clinics to target and customize interventions that build upon existing strengths and supports. Our findings have implications for efforts to promote early diagnosis and newborn screening, in that increased needs in mothers of younger children should be anticipated and built into counseling. Further research can assess whether and how unmet needs change as new therapies become available.

  6. Challenges in care of the child with special health care needs in a resource limited environment

    Directory of Open Access Journals (Sweden)

    Edwin Ehi Eseigbe

    2013-01-01

    Full Text Available To identify challenges encountered in the care of children with special health care needs in a resource limited environment a 10 year-old child with a diagnosis of Tuberous Sclerosis was studied. Challenges identified were in: making a definitive diagnosis, provision of adequate care, cost of care, meeting parental expectations and accessing community support for the child and family. Available specialist health care and related services, including community rehabilitation, were provided for the child and family. The study highlights the need for improved community awareness, development in the provision of specialist health care services and institution of governmental policies that identify, support and protect children with special health care needs.

  7. Improving performance management for delivering appropriate care for patients no longer needing acute hospital care.

    Science.gov (United States)

    Penney, Christine; Henry, Effie

    2008-01-01

    The public, providers and policy-makers are interested in a service continuum where care is provided in the appropriate place. Alternate level of care is used to define patients who no longer need acute care but remain in an acute care bed. Our aims were to determine how subacute care and convalescent care should be defined in British Columbia (BC); how these care levels should be aligned with existing legislation to provide more consistent service standards to patients and what reporting requirements were needed for system planning and performance management. A literature review was conducted to understand the international trends in performance management, care delivery models and change management. A Canada-wide survey was carried out to determine the directions of other provinces on the defined issues and a BC survey provided a current state analysis of programming within the five regional health authorities (HAs). A provincial policy framework for subacute and convalescent care has been developed to begin to address the concerns raised and provide a base for performance measurement. The policy has been approved and disseminated to BC HAs for implementation. An implementation plan has been developed and implementation activities have been integrated into the work of existing provincial committees. Evaluation will occur through performance measurement. The benefits anticipated include: clear policy guidance for programme development; improved comparability of performance information for system monitoring, planning and integrity of the national acute care Discharge Abstracting Database; improved efficiency in acute care bed use; and improved equity of access, insurability and quality for patients requiring subacute and convalescent care. While a national reporting system exists for acute care in Canada, this project raises questions about the implications for this system, given the shifting definition of acute care as other care levels emerge. Questions are also

  8. Disorders of consciousness: outcomes, comorbidities, and care needs.

    Science.gov (United States)

    Whyte, John; Nakase-Richardson, Risa

    2013-10-01

    Over the last decade, research on patients with disorders of consciousness (DOC) has suggested that their prognosis for functional recovery early after injury is surprisingly positive, particularly for those with traumatic etiologies; that meaningful recovery proceeds for longer intervals than previously appreciated; and that such individuals are often medically complex and challenging to manage. However, access to intensive specialty rehabilitation is limited for most individuals with DOC in the United States. The evolving understanding of DOC calls for a reconsideration of appropriate models of care. This collection of articles provides insight into the functional recovery of individuals with DOC, new tools for assessing prognosis, and the patterns of comorbidity that complicate the recovery process. In addition, models of care from the United States and Europe that attempt to address the needs of patients as well as their caregivers are presented. Copyright © 2013 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.

  9. Needs and preferences of parents of adolescents with multiple and complex needs in residential care

    OpenAIRE

    Steene, Van den, Helena; West, Van, Dirk; Glazemakers, Inge

    2018-01-01

    Abstract: The perspective of parents whose children are in residential care, has received only minor attention in the literature, despite evidence pointing out the value of parental involvement in care delivery for their child. Drawing upon in‐depth interviews with 12 parents of adolescent girls with multiple and complex needs in residential child welfare, this exploratory study describes parents' own needs and preferences with regard to care delivery. Parents wish: (a) to have a true partner...

  10. Developing the science of end-of-life and palliative care research: National Institute of Nursing Research summit.

    Science.gov (United States)

    Csikai, Ellen L

    2011-01-01

    A rare opportunity to examine accomplishments and identify ways to advance research in end-of-life and palliative care was offered by the National Institute of Nursing Research (NINR) through a summit meeting held in August 2011. The Science of Compassion: Future Directions in End-of-Life and Palliative Care brought together nationally recognized leaders in end-of-life and palliative care research, including grantees of NINR, as well as more than 700 attendees from all disciplines. It was an exciting affirmation of the importance of moving forward in the field. Presented in this article is a summary of the summit and a call to action for end-of-life and palliative care social workers to engage in seeking funding to conduct needed research and to ensure our unique perspective is represented.

  11. Congenital Heart Disease: Guidelines of Care for Children with Special Health Care Needs.

    Science.gov (United States)

    Minnesota State Dept. of Health, Minneapolis. Services for Children with Handicaps.

    These guidelines were written to help families coordinate the health care that may be needed by a child with congenital heart disease. The booklet begins with general information about congenital heart disease. It then discusses the goals of health care, the health care team, the importance of periodic health care, and record keeping procedures.…

  12. The needs of patient family members in the intensive care unit in ...

    African Journals Online (AJOL)

    Background. The admission of a relative to an intensive care unit (ICU) is a stressful experience for family members. There has been limited research addressing this issue in Kigali, Rwanda. Objective. To explore the needs of patient family members admitted into an ICU in Kigali, Rwanda. Methods. This study used a ...

  13. The future of health insurance for children with special health care needs.

    Science.gov (United States)

    Newacheck, Paul W; Houtrow, Amy J; Romm, Diane L; Kuhlthau, Karen A; Bloom, Sheila R; Van Cleave, Jeanne M; Perrin, James M

    2009-05-01

    Because of their elevated need for services, health insurance is particularly important for children with special health care needs. In this article we assess how well the current system is meeting the insurance needs of children with special health care needs and how emerging trends in health insurance may affect their well-being. We begin with a review of the evidence on the impact of health insurance on the health care experiences of children with special health care needs based on the peer-reviewed literature. We then assess how well the current system meets the needs of these children by using data from 2 editions of the National Survey of Children With Special Health Care Needs. Finally, we present an analysis of recent developments and emerging trends in the health insurance marketplace that may affect this population. Although a high proportion of children with special health care needs have insurance at any point in time, nearly 40% are either uninsured at least part of the year or have coverage that is inadequate. Recent expansions in public coverage, although offset in part by a contraction in employer-based coverage, have led to modest but significant reductions in the number of uninsured children with special health care needs. Emerging insurance products, including consumer-directed health plans, may expose children with special health care needs and their families to greater financial risks. Health insurance coverage has the potential to secure access to needed care and improve the quality of life for these children while protecting their families from financially burdensome health care expenses. Continued vigilance and advocacy for children and youth with special health care needs are needed to ensure that these children have access to adequate coverage and that they fare well under health care reform.

  14. Using Health Care Utilization and Publication Patterns to Characterize the Research Portfolio and to Plan Future Research Investments.

    Directory of Open Access Journals (Sweden)

    Luba Katz

    Full Text Available Government funders of biomedical research are under increasing pressure to demonstrate societal benefits of their investments. A number of published studies attempted to correlate research funding levels with the societal burden for various diseases, with mixed results. We examined whether research funded by the Department of Veterans Affairs (VA is well aligned with current and projected veterans' health needs. The organizational structure of the VA makes it a particularly suitable setting for examining these questions.We used the publication patterns and dollar expenditures of VA-funded researchers to characterize the VA research portfolio by disease. We used health care utilization data from the VA for the same diseases to define veterans' health needs. We then measured the level of correlation between the two and identified disease groups that were under- or over-represented in the research portfolio relative to disease expenditures. Finally, we used historic health care utilization trends combined with demographic projections to identify diseases and conditions that are increasing in costs and/or patient volume and consequently represent potential targets for future research investments.We found a significant correlation between research volume/expenditures and health utilization. Some disease groups were slightly under- or over-represented, but these deviations were relatively small. Diseases and conditions with the increasing utilization trend at the VA included hypertension, hypercholesterolemia, diabetes, hearing loss, sleeping disorders, complications of pregnancy, and several mental disorders.Research investments at the VA are well aligned with veteran health needs. The VA can continue to meet these needs by supporting research on the diseases and conditions with a growing number of patients, costs of care, or both. Our approach can be used by other funders of disease research to characterize their portfolios and to plan research

  15. Using Health Care Utilization and Publication Patterns to Characterize the Research Portfolio and to Plan Future Research Investments.

    Science.gov (United States)

    Katz, Luba; Fink, Rebecca V; Bozeman, Samuel R; McNeil, Barbara J

    2014-01-01

    Government funders of biomedical research are under increasing pressure to demonstrate societal benefits of their investments. A number of published studies attempted to correlate research funding levels with the societal burden for various diseases, with mixed results. We examined whether research funded by the Department of Veterans Affairs (VA) is well aligned with current and projected veterans' health needs. The organizational structure of the VA makes it a particularly suitable setting for examining these questions. We used the publication patterns and dollar expenditures of VA-funded researchers to characterize the VA research portfolio by disease. We used health care utilization data from the VA for the same diseases to define veterans' health needs. We then measured the level of correlation between the two and identified disease groups that were under- or over-represented in the research portfolio relative to disease expenditures. Finally, we used historic health care utilization trends combined with demographic projections to identify diseases and conditions that are increasing in costs and/or patient volume and consequently represent potential targets for future research investments. We found a significant correlation between research volume/expenditures and health utilization. Some disease groups were slightly under- or over-represented, but these deviations were relatively small. Diseases and conditions with the increasing utilization trend at the VA included hypertension, hypercholesterolemia, diabetes, hearing loss, sleeping disorders, complications of pregnancy, and several mental disorders. Research investments at the VA are well aligned with veteran health needs. The VA can continue to meet these needs by supporting research on the diseases and conditions with a growing number of patients, costs of care, or both. Our approach can be used by other funders of disease research to characterize their portfolios and to plan research investments.

  16. Fathers' Needs and Masculinity Dilemmas in a Neonatal Intensive Care Unit in Denmark.

    Science.gov (United States)

    Noergaard, Betty; Ammentorp, Jette; Fenger-Gron, Jesper; Kofoed, Poul-Erik; Johannessen, Helle; Thibeau, Shelley

    2017-08-01

    Most healthcare professionals in neonatal intensive care units typically focus on the infants and mothers; fathers often feel powerless and find it difficult to establish a father-child relationship. In family-centered healthcare settings, exploring fathers' experiences and needs is important because men's roles in society, especially as fathers, are changing. To describe fathers' needs when their infants are admitted to a neonatal intensive care unit and to discuss these needs within a theoretical framework of masculinity to advance understanding and generate meaningful knowledge for clinical practices. This qualitative study used participant observation, interviews, multiple sequential interviews, and a focus group discussion. Data were analyzed using grounded theory principles. Analysis of the fathers' needs generated 2 primary themes: (1) Fathers as caregivers and breadwinners and (2) fathers and emotions. Fathers wished to be involved and to take care of their infants but have to balance cultural and social norms and expectations of being breadwinners with their wishes to be equal coparents. Health professionals in neonatal intensive care units must be aware of fathers' need and desire to be equal coparents. Nurses should play a key role by, for example, showing that fathers are as important to their infants as are the mothers, helping them become involved in childcare, and ensuring that they are directly informed about their children's progress. Further research in other cultural settings would contribute to knowledge regarding fatherhood and the role of fathers in childcare.

  17. Optimizing the Office Visit for Adolescents with Special Health Care Needs.

    Science.gov (United States)

    Nathawad, Rita; Hanks, Christopher

    2017-08-01

    Youth with special health care needs (YSHCN) experience health care disparities and often need additional support to receive optimal medical care, particularly in adolescence as they prepare to transition to adult care. Many medical practices struggle to address their needs. Here, we discuss approaches to improve medical care in office-based settings for YSHCN. Office visits can be optimized by training staff in developmentally appropriate care and ensuring that the physical office space facilitates care. Participating in previsit preparation, including managing patient registries of YSHCN, engaging in regular team huddles, and incorporating previsit planning, can improve preparation and ensure that important needs are not overlooked. Additionally, approaches to improve patient and medical provider comfort with office visits with YSHCN, including approaches to measuring vital signs, examining patients, and communicating with patients with various disabilities, are reviewed. Finally, we discuss methods of supporting adolescents with special health care needs in developing self-management skills that will allow them to be better prepared to enter adult health care settings when appropriate. Although YSHCN can present challenges to medical teams, their care can be improved by developing office-based changes and processes to support improved care for these patients. This may help overcome the health care disparities they experience and increase comfort for all members of the medical team. Copyright © 2017. Published by Elsevier Inc.

  18. Toward a patient-centered ambulatory after-visit summary: Identifying primary care patients' information needs.

    Science.gov (United States)

    Clarke, Martina A; Moore, Joi L; Steege, Linsey M; Koopman, Richelle J; Belden, Jeffery L; Canfield, Shannon M; Kim, Min S

    2018-09-01

    The purpose of this study was to determine the information needs of primary care patients as they review clinic visit notes to inform information that should be contained in an after-visit summary (AVS). We collected data from 15 patients with an acute illness and 14 patients with a chronic disease using semi-structured interviews. The acute patients reviewed seven major sections, and chronic patients reviewed eight major sections of a simulated, but realistic visit note to identify relevant information needs for their AVS. Patients in the acute illness group identified the Plan, Assessment and History of Present Illness the most as important note sections, while patients in the chronic care group identified Significant Lab Data, Plan, and Assessment the most as important note sections. This study was able to identify primary care patients' information needs after clinic visit. Primary care patients have information needs pertaining to diagnosis and treatment, which may be the reason why both patient groups identified Plan and Assessment as important note sections. Future research should also develop and assess an AVS based on the information gathered in this study and evaluate its usefulness among primary care patients. The results of this study can be used to inform the development of an after-visit summary that assists patients to fully understand their treatment plan, which may improve treatment adherence.

  19. Geriatric health care in India - Unmet needs and the way forward

    Directory of Open Access Journals (Sweden)

    Prabha Adhikari

    2017-01-01

    Full Text Available India has nearly 120 million elderly people with various physical, psychosocial, economic, and spiritual problems. While the functionally and cognitively fit can access usual health-care facilities provided by the government, these people need active aging program to keep them independent. Health ministry has created geriatric centers and geriatric clinics in most of the states; however, these centers may not serve the functionally and cognitively impaired elderly. There is great need for mobile units, day-care centers and hospices, and need for training of personnel in home nursing. Routine care clinics cannot handle the burden of geriatric population to address their multimorbidity and several other age-related problems. There is a need for a rapid training of health-care professionals of various disciplines in geriatric care. Government must support nongovernmental organizations and other agencies which provide day care, home care, and palliative care so that these services become affordable to all the elderly.

  20. Primary care careers among recent graduates of research-intensive private and public medical schools.

    Science.gov (United States)

    Choi, Phillip A; Xu, Shuai; Ayanian, John Z

    2013-06-01

    Despite a growing need for primary care physicians in the United States, the proportion of medical school graduates pursuing primary care careers has declined over the past decade. To assess the association of medical school research funding with graduates matching in family medicine residencies and practicing primary care. Observational study of United States medical schools. One hundred twenty-one allopathic medical schools. The primary outcomes included the proportion of each school's graduates from 1999 to 2001 who were primary care physicians in 2008, and the proportion of each school's graduates who entered family medicine residencies during 2007 through 2009. The 25 medical schools with the highest levels of research funding from the National Institutes of Health in 2010 were designated as "research-intensive." Among research-intensive medical schools, the 16 private medical schools produced significantly fewer practicing primary care physicians (median 24.1% vs. 33.4%, p schools. In contrast, the nine research-intensive public medical schools produced comparable proportions of graduates pursuing primary care careers (median 36.1% vs. 36.3%, p = 0.87) and matching in family medicine residencies (median 7.4% vs. 10.0%, p = 0.37) relative to the other 66 public medical schools. To meet the health care needs of the US population, research-intensive private medical schools should play a more active role in promoting primary care careers for their students and graduates.

  1. Embracing value co-creation in primary care services research: a framework for success.

    Science.gov (United States)

    Janamian, Tina; Crossland, Lisa; Jackson, Claire L

    2016-04-18

    Value co-creation redresses a key criticism of researcher-driven approaches to research - that researchers may lack insight into the end users' needs and values across the research journey. Value co-creation creates, in a step-wise way, value with, and for, multiple stakeholders through regular, ongoing interactions leading to innovation, increased productivity and co-created outcomes of value to all parties - thus creating a "win more-win more" environment. The Centre of Research Excellence (CRE) in Building Primary Care Quality, Performance and Sustainability has co-created outcomes of value that have included robust and enduring partnerships, research findings that have value to end users (such as the Primary Care Practice Improvement Tool and the best-practice governance framework), an International Implementation Research Network in Primary Care and the International Primary Health Reform Conference. Key lessons learned in applying the strategies of value co-creation have included the recognition that partnership development requires an investment of time and effort to ensure meaningful interactions and enriched end user experiences, that research management systems including governance, leadership and communication also need to be "co-creative", and that openness and understanding is needed to work across different sectors and cultures with flexibility, fairness and transparency being essential to the value co-creation process.

  2. The need for mental health services research focusing on poor young women.

    Science.gov (United States)

    Miranda, Jeanne; Green, Bonnie L.

    1999-06-01

    Despite the fact that the relationship between poverty and increased risk for a broad spectrum of mental disorders has been documented for several decades, very little is known about providing mental health treatments to poor individuals. In this paper, we emphasize the importance of developing, and empirically evaluating, sensitive and appropriate interventions for poor young women who suffer from common mental disorders. WHO ARE THE US POOR?: In the US, nearly 14% of individuals live in poverty, and another 20% in near poverty. The poor are disproportionally women and children such that 63% of female-headed households are poor. Young women and ethnic minorities are over-represented among the poor also, with 55% of those living below the poverty level being minorities. NEEDS AND BARRIERS TO CARE AMONG POOR, YOUNG WOMEN: The poor have more mental disorders than those with more resources. Further, women are twice as likely as men to have a mood or anxiety disorder, including major depression and post-traumatic stress disorder (PTSD), with younger women at higher risk than older women. Research alos indicates that poor women have high exposure to traumatic events and cumulative adversity that is directly related to their mental health. This history may serve, in part, as a barrier to seeking mental health care. Other barriers in this population include lack of insurance, lack of access to primary care where mental disorders might be detected, practical problems like lack of childcare or transportation, and the inflexibility of low-income service jobs. Religious beliefs and attitudes about mental health treatment may play a role as well. Recent policy changes in the US have contributed to the vulnerability of this group as eligibility for welfare programs has reduced, and time limits have decreasd. Services for immigrants are also severely limited, and managed care strategies for those in the public sector may be confusing. IMPORTANT, UNANSWERED QUESTION: More needs

  3. 25 CFR 11.1111 - Minor-in-need-of-care dispositional hearing.

    Science.gov (United States)

    2010-04-01

    ... 25 Indians 1 2010-04-01 2010-04-01 false Minor-in-need-of-care dispositional hearing. 11.1111... INDIAN OFFENSES AND LAW AND ORDER CODE Minor-in-Need-of-Care Procedure § 11.1111 Minor-in-need-of-care... take place to hear evidence on the question of proper disposition. (b) All the rights listed in § 11...

  4. Patients' family satisfaction with needs met at the medical intensive care unit.

    Science.gov (United States)

    Khalaila, Rabia

    2013-05-01

    The current study investigated the perceived importance and the perceived met needs of family members in the medical intensive care unit and assessed family members' satisfaction with needs met. Studies conducted throughout the world over the past 30 years indicate that family needs are still neglected. Unmet needs of family members of patients in the intensive care unit lead to dissatisfaction with care. A cross-sectional study. A total of 70 family members of critically ill patients were included in this study conducted in a medical intensive care unit in Israel between October 2007-September 2008, using a structured interview. Three outcomes measured by the Family Satisfaction in the Intensive Care Unit Inventory were regressed separately for baseline variables and family needs met subscales as measured by the Critical Care Family Needs Inventory. Multivariate linear regression analysis was used to detect factors that could have predicted each outcome. The results showed differences between the perceived importance and the perceived met needs of family members. Satisfaction with care was positively related to meeting all needs domains except the information need. However, satisfaction with information and decision-making was related only to meeting information and emotional support needs. Continued unmet needs of family members of intensive care unit patients have a negative impact on family satisfaction. Only sweeping changes in clinical practice will succeed in meeting the unmet needs of patients' families. © 2012 Blackwell Publishing Ltd.

  5. Preparing direct care nurses to function as research coordinators in a heart failure study.

    Science.gov (United States)

    Trocky, Nina M

    2017-09-19

    Nurses interviewed heart failure patients admitted to two rural hospitals, to learn what was important to them concerning their disease. Data from this study would inform a subsequent heart failure intervention study. The researchers gained a better appreciation of the role of direct care nurses in research coordination, recruitment and data collection. To describe lessons learned during this research about using direct care nurses as research coordinators. The direct care nurses were highly motivated and engaged in the research, identifying barriers and solutions to enrolling heart failure patients in the hospital. The researchers developed customised educational materials and data management documents to address the nurses' learning needs, ensuring compliance with protocol and the safety of participants. Nurse researchers can establish an effective partnership with direct care nurses when conducting research studies. To accommodate learning needs and workplace demands, securing protected time for nurses to complete training, budgeting for administrative support and monitoring recruitment data weekly, as opposed to monthly, may be considered. Direct care nurses can inform the design and conduct of research conducted in a hospital. ©2012 RCN Publishing Company Ltd. All rights reserved. Not to be copied, transmitted or recorded in any way, in whole or part, without prior permission of the publishers.

  6. Utility of a summative scale based on the Children with Special Health Care Needs (CSHCN) Screener to identify CSHCN with special dental care needs.

    Science.gov (United States)

    Iida, Hiroko; Lewis, Charlotte W

    2012-08-01

    Our objective was to determine if a summative scale reflecting the number of positive criteria on the Children with Special Health Care Needs (CSHCN) Screener is useful in identifying subgroups of CSHCN at risk for poorer oral health and unmet dental care needs and who should be considered to have special dental care needs. Data were analyzed for a population-based sample of 91,642 US children needs in the past 12 months. Descriptive and multivariable logistic regression analyses were performed for each outcome using the survey command in Stata to account for the sampling design. A summative scale based on the number of positive CSHCN Screener criteria was independently associated with various parent-perceived poorer oral health outcomes in children. CSHCN who met 4 or 5 screener criteria had 4 and 4.5 times, respectively, the odds of having fair-poor condition of teeth and bleeding gums relative to non-CSHCN. They also had 87% higher odds for parent-perceived toothache and 2 and 2.5 times the odds of having recent broken teeth and unmet dental care needs relative to non-CSHCN, respectively. There was no dose-dependent association between summative number of positive CSHCN Screener criteria and reported cavities in children. Application of a summative score based on the CSHCN Screener has utility in identifying the CSHCN subgroup with special dental care needs.

  7. Assessing palliative care needs: views of patients, informal carers and healthcare professionals.

    Science.gov (United States)

    McIlfatrick, Sonja

    2007-01-01

    This paper reports a study to assess the palliative care needs of the adult population served by a healthcare provider organization in Northern Ireland from the perspectives of patients, informal carers and healthcare providers. Assessing palliative care need is a key factor for health service planning. Traditionally, palliative care has been associated with end-of-life care and cancer. More recently, the concept has been extended to include care for both cancer and non-cancer populations. Various approaches have been advocated for assessing need, including the exploration of professional provider and user perspectives of need. Semi-structured qualitative interviews were undertaken with a purposive sample of patients and lay carers receiving palliative care services (n = 24). Focus groups were also conducted with multi-professional palliative care providers (n = 52 participants) and face to face interviews were undertaken with key managerial stakeholders in the area (n = 7). The focus groups and interviews concentrated on assessment of palliative care need. All the interviews were transcribed verbatim and analysed using Burnard's framework. Professional providers experienced difficulty in defining the term palliative care. Difficulties in communication and information exchange, and fragmented co-ordination between services were identified. The main areas of need identified by all participants were social and psychological support; financial concerns; and the need for choice and information. All participants considered that there was inequity between palliative care service provision for patients with cancer and non-cancer diseases. All patients, regardless of diagnosis, should be able to access palliative care appropriate to their individual needs. For this to happen in practice, an integrated approach to palliative care is essential. The study methodology confirms the value of developing a comprehensive approach to assessing palliative care need.

  8. Health needs of regional Australian children in out-of-home care.

    Science.gov (United States)

    Arora, Nitin; Kaltner, Melissa; Williams, Judy

    2014-10-01

    This study aims to identify the health needs of children placed in out-of-home care in regional Queensland and to compare them with the needs of similar children in metropolitan Queensland. Retrospective chart review and subsequent analysis of data from the first assessments of the children placed in care from January 2005 to April 2011. Health needs based on assessment recommendations were then compared with needs and recommendations from a similar clinic in metropolitan Brisbane. Two hundred thirty-nine first assessments were reviewed. The average number of health referrals arising out of each assessment was 2. 72% children were between 2 and 12 years of age and accounted for 76% of the health referrals made. The 10-13% of the children needed referrals for medical and surgical specialties, audiology, speech pathology, dental, and ophthalmology/optometry, each. A percentage of 30 needed ongoing paediatric care. The 15% needed immunisation catch up, 35% counselling and behaviour management, and 15% formal mental health referrals. These were comparable to the health needs identified in out-of-home care children residing in metropolitan Queensland. Children in care who live in a regional setting have similar health-care needs compared with urban children. Given restricted health services in regional settings, there is difficulty in accessing services to meet these needs. © 2014 The Authors. Journal of Paediatrics and Child Health © 2014 Paediatrics and Child Health Division (Royal Australasian College of Physicians).

  9. Nurses' Needs for Care Robots in Integrated Nursing Care Services.

    Science.gov (United States)

    Lee, Jai-Yon; Song, Young Ae; Jung, Ji Young; Kim, Hyun Jeong; Kim, Bo Ram; Do, Hyun-Kyung; Lim, Jae-Young

    2018-05-13

    To determine the need for care robots among nurses and to suggest how robotic care should be prioritized in an integrated nursing care services. Korea is expected to be a super-aged society by 2030. To solve care issues with elderly inpatient caused by informal caregivers, the government introduced 'integrated nursing care services'; these are comprehensive care systems staffed by professionally trained nurses. To assist them, a care robot development project has been launched. The study applied a cross-sectional survey. In 2016, we conducted a multi-center survey involving 302 registered nurses in five hospitals including three tertiary and two secondary hospitals in Korea. The questionnaire consisted of general characteristics of nurses and their views on and extents of agreement about issues associated with robotic care. Trial center nurses and those with ≥10 years of experience reported positively on the prospects for robotic care. The top three desired primary roles for care robots were 'measuring/monitoring', 'mobility/activity' and 'safety care'. 'Reduction in workload', especially in terms of 'other nursing services' which were categorized as non-value-added nursing activities, was the most valued feature. The nurses approved of the aid by care robots but were concerned about device malfunction and interruption of rapport with patients. Care robots are expected to be effective in integrated nursing care services, particularly in 'measuring/monitoring'. Such robots should decrease nurses' workload and minimize non-value-added nursing activities efficiently. No matter how excellent care robots are, they must co-operate with and be controlled by nurses. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.

  10. Nurse care manager contribution to quality of care in a dual-eligible special needs plan.

    Science.gov (United States)

    Roth, Carol P; Ganz, David A; Nickles, Lorraine; Martin, David; Beckman, Robin; Wenger, Neil S

    2012-07-01

    We evaluated the quality of care provided to older patients with complex needs in a dual-eligible, community-based Medicare Special Needs Plan that used a nurse care manager model. Care provided by physicians was substantially supplemented by nurse care managers, as measured by Assessing Care of Vulnerable Elders quality indicators. We describe selected nurse care manager activities for six geriatric conditions (falls, dementia, depression, nutrition, urinary incontinence, and end-of-life care) during provision of patient care coordination and management for patients in the highest decile of clinical complexity. We identify areas of high nurse performance (i.e., falls screening, functional assessment, behavioral interventions for dementia problems, advance care planning) and areas of potential missed opportunities (i.e., follow up for new memory problems, targeted dementia counseling, nutrition, and behavioral approaches to urinary incontinence). Increasing the collaborative interaction between nurses providing care in this model and physicians has the potential to enhance nurses' contributions to primary care for vulnerable older adults.

  11. Development and Validation of the Spiritual Care Needs Inventory for Acute Care Hospital Patients in Taiwan.

    Science.gov (United States)

    Wu, Li-Fen; Koo, Malcolm; Liao, Yu-Chen; Chen, Yuh-Min; Yeh, Dah-Cherng

    2016-12-01

    Spiritual care is increasingly being recognized as an integral aspect of nursing practice. The aim of this study was to develop a new instrument, Spiritual Care Needs Inventory (SCNI), for measuring spiritual care needs in acute care hospital patients with different religious beliefs. The 21-item instrument was completed by 1,351 adult acute care patients recruited from a medical center in Taiwan. Principal components analysis of the SCNI revealed two components, (a) meaning and hope and (b) caring and respect, which together accounted for 66.2% of the total variance. The internal consistency measures for the two components were 0.96 and 0.91, respectively. Furthermore, younger age, female sex, Christian religion, and regularly attending religious activities had significantly higher mean total scores in both components. The SCNI was found to be a simple instrument with excellent internal consistency for measuring the spiritual care needs in acute care hospital patients. © The Author(s) 2015.

  12. Supporting primary healthcare professionals to care for people with intellectual disability: a research agenda.

    Science.gov (United States)

    Lennox, Nicholas; Van Driel, Mieke L; van Dooren, Kate

    2015-01-01

    The vast health inequities experienced by people with intellectual disability remain indisputable. Persistent and contemporary challenges exist for primary healthcare providers and researchers working to contribute to improvements to the health and well-being of people with intellectual disability. Over two decades after the only review of supports for primary healthcare providers was published, this paper contributes to an evolving research agenda that aims to make meaningful gains in health-related outcomes for this group. The present authors updated the existing review by searching the international literature for developments and evaluations of multinational models of care. Based on our review, we present three strategies to support primary healthcare providers: (i) effectively using what we know, (ii) considering other strategies that offer support to primary healthcare professionals and (iii) researching primary health care at the system level. Strengthening primary care by supporting equitable provision of health-related care for people with intellectual disability is a much needed step towards improving health outcomes among people with intellectual disability. More descriptive quantitative and qualitative research, as well as intervention-based research underpinned by rigorous mixed-methods evaluating these strategies at the primary care level, which is sensitive to the needs of people with intellectual disability will assist primary care providers to provide better care and achieve better health outcomes. Many people with intellectual disability have poor health. The authors reviewed what has been written by other researchers about how to improve the health of people with intellectual disability. In the future, people who support adults with intellectual disability should continue doing what they do well, think of other ways to improve health, and do more research about health. At all times, the needs of people with intellectual disability should be the

  13. Supportive care needs of patients with amyotrophic lateral sclerosis/motor neuron disease and their caregivers: A scoping review.

    Science.gov (United States)

    Oh, Juyeon; Kim, Jung A

    2017-12-01

    To identify the supportive care needs of amyotrophic lateral sclerosis/motor neuron disease patients and their caregivers, categorise and summarise them into a Supportive Care Needs Framework and identify gaps in literature. Little is known about the supportive care needs of amyotrophic lateral sclerosis/motor neuron disease patients and their caregivers, and this subject has not previously been systemically reviewed. Scoping review. We conducted a scoping review from the MEDLINE, EMBASE, CINAHL and Cochrane databases for the period January 2000-July 2016, using the following inclusion criteria: (i) written in English only, (ii) published in peer-reviewed journals, (iii) at least part of the research considered the supportive care needs perspective of amyotrophic lateral sclerosis/motor neuron disease patients or their caregivers and (iv) the population sample included patients of amyotrophic lateral sclerosis/motor neuron disease or their caregivers. Thirty-seven articles were included. Our review shows that amyotrophic lateral sclerosis/motor neuron disease patients and their caregivers' supportive care needs were mentioned across all seven domains of the Supportive Care Needs Framework. Most common were practical needs (n = 24), followed by Informational needs (n = 19), Social needs (n = 18), Psychological needs (n = 16), Physical needs (n = 15), Emotional needs (n = 13) and Spiritual needs (n = 8). From the perspectives of amyotrophic lateral sclerosis/motor neuron disease patients and their caregivers, there is a significant need for more practical, social, informational, psychological, physical, emotional and spiritual support. The Supportive Care Needs Framework has potential utility in the development of patient-centred support services or healthcare policies and serves as an important base for further studies; especially, specific examples of each supportive care needs domain can guide in clinical settings when healthcare professionals

  14. The care needs of elderly patients with schizophrenia spectrum disorders

    NARCIS (Netherlands)

    Meesters, P.D.; Comijs, H.C.; Dröes, R.M.; de Haan, L.; Smit, J.H.; Eikelenboom, P.; Beekman, A.T.F.; Stek, M.L.

    2013-01-01

    Objective: Elderly patients constitute the fastest growing segment of the schizophrenia population. Still, their needs for care are poorly understood. This study aimed to gain insight into the care needs of older patients with schizophrenia spectrum disorders. Setting and Participants: Patients,

  15. The match between institutional elderly care management research and management challenges - a systematic literature review

    Science.gov (United States)

    2012-01-01

    Background Elderly care practice and its management together with policy and research play a crucial role in responding to increasing challenges in institutional care for elderly people. Successful dialogue between these is necessary. The purpose of this systematic literature review is to compare how institutional elderly care management research meets the care challenges currently emphasized in international long-term care policy documents. Methods This paper was based on a systematic literature review. After screening 1971 abstracts using inclusion/exclusion criteria, 58 refereed articles published between 2000 and 2010 remained for analysis. The articles were analyzed using theory-based content analysis by comparing the results to the framework based on analysis of international long-term care management policy documents. Results The current challenges of long-term care management identified from policy documents were Integrated Care Management, Productivity Management, Quality Management, Workforce Management and ICT Management. The research on institutional elderly care management responded somewhat to the challenges mentioned in policy documents. However, some of the challenges were studied broadly and some were paid only minor attention. Further, only few studies focused on the core items of challenges addressed in policy documents. Conclusions Institutional care management research needs to focus more on challenges in integrated care, productivity, ICT and division of labor. Managers, researchers and policy-makers should assume more active collaborative roles in processes of research, policymaking and policy implementation. In addition managers’ and policymakers’ scientific literacy needs to be enhanced. PMID:23137416

  16. The match between institutional elderly care management research and management challenges - a systematic literature review

    Directory of Open Access Journals (Sweden)

    Kokkonen Kaija

    2012-11-01

    Full Text Available Abstract Background Elderly care practice and its management together with policy and research play a crucial role in responding to increasing challenges in institutional care for elderly people. Successful dialogue between these is necessary. The purpose of this systematic literature review is to compare how institutional elderly care management research meets the care challenges currently emphasized in international long-term care policy documents. Methods This paper was based on a systematic literature review. After screening 1971 abstracts using inclusion/exclusion criteria, 58 refereed articles published between 2000 and 2010 remained for analysis. The articles were analyzed using theory-based content analysis by comparing the results to the framework based on analysis of international long-term care management policy documents. Results The current challenges of long-term care management identified from policy documents were Integrated Care Management, Productivity Management, Quality Management, Workforce Management and ICT Management. The research on institutional elderly care management responded somewhat to the challenges mentioned in policy documents. However, some of the challenges were studied broadly and some were paid only minor attention. Further, only few studies focused on the core items of challenges addressed in policy documents. Conclusions Institutional care management research needs to focus more on challenges in integrated care, productivity, ICT and division of labor. Managers, researchers and policy-makers should assume more active collaborative roles in processes of research, policymaking and policy implementation. In addition managers’ and policymakers’ scientific literacy needs to be enhanced.

  17. The match between institutional elderly care management research and management challenges - a systematic literature review.

    Science.gov (United States)

    Kokkonen, Kaija; Rissanen, Sari; Hujala, Anneli

    2012-11-08

    Elderly care practice and its management together with policy and research play a crucial role in responding to increasing challenges in institutional care for elderly people. Successful dialogue between these is necessary. The purpose of this systematic literature review is to compare how institutional elderly care management research meets the care challenges currently emphasized in international long-term care policy documents. This paper was based on a systematic literature review. After screening 1971 abstracts using inclusion/exclusion criteria, 58 refereed articles published between 2000 and 2010 remained for analysis. The articles were analyzed using theory-based content analysis by comparing the results to the framework based on analysis of international long-term care management policy documents. The current challenges of long-term care management identified from policy documents were Integrated Care Management, Productivity Management, Quality Management, Workforce Management and ICT Management. The research on institutional elderly care management responded somewhat to the challenges mentioned in policy documents. However, some of the challenges were studied broadly and some were paid only minor attention. Further, only few studies focused on the core items of challenges addressed in policy documents. Institutional care management research needs to focus more on challenges in integrated care, productivity, ICT and division of labor. Managers, researchers and policy-makers should assume more active collaborative roles in processes of research, policymaking and policy implementation. In addition managers' and policymakers' scientific literacy needs to be enhanced.

  18. Needs assessments in palliative care: an appraisal of definitions and approaches used.

    Science.gov (United States)

    Higginson, Irene J; Hart, Sam; Koffman, Jonathan; Selman, Lucy; Harding, Richard

    2007-05-01

    We report a systematic appraisal of definitions and approaches to needs assessment in palliative care. Electronic databases were searched, and relevant individuals and organizations were contacted to identify needs assessments in palliative care. Over 200 articles were identified giving general information on needs assessment, and 77 articles comprised palliative care-related needs assessment reports. The reports originated from Africa (37), Australia (1), Europe (including former central/eastern European states) (35), USA (1), Latin America (5), and Asia (7). Two underpinning definitions of need were identified, that of Maslow from the field of psychology, and that of Bradshaw from sociology. However, in conducting needs assessments, these definitions were operationalized, and here the National Health Service Executive definition of need as "the ability to benefit from health care" is helpful. We identified three main categories of approach to needs assessment--epidemiological, corporate, and comparative--that can be used in combination. Careful consideration must be paid to any needs assessment data to ensure that the assessment is implemented.

  19. Information transfer: what do decision makers want and need from researchers?

    Directory of Open Access Journals (Sweden)

    Law Mary

    2007-07-01

    Full Text Available Abstract Purpose The purpose of this study was to undertake a systematic assessment of the need for research-based information by decision-makers working in community-based organizations. It is part of a more comprehensive knowledge transfer and exchange strategy that seeks to understand both the content required and the format/methods by which such information should be presented. Methods This was a cross-sectional telephone survey. Questions covered current practices, research use, and demographic information, as well as preferences for receiving research information. Three types of organizations participated: Children's Treatment Centres of Ontario (CTCs; Ontario Community Care Access Centres (CCACs; and District Health Councils (DHCs. The analysis used descriptive statistics and analyses of variance (ANOVA to describe and explore variations across organizations. Results The participation rate was 70%. The highest perception of barriers to the use of research information was reported by the CCAC respondents, followed by CTCs and DHCs. The CTCs and DHCs reported greater use of research evidence in planning decisions as compared to the CCACs. Four sources of information transfer were consistently identified. These were websites, health-related research journals, electronic mail, and conferences and workshops. Preferred formats for receiving information were executive summaries, abstracts, and original articles. Conclusion There were a number of similarities across organization type with respect to perceived barriers to research transfer, as well as the types of activities the organizations engaged in to promote research use in decision-making. These findings support the importance of developing interactive, collaborative knowledge transfer strategies, as well as the need to foster relationships with health care decision-makers, practitioners and policymakers.

  20. Long-term care-service use and increases in care-need level among home-based elderly people in a Japanese urban area.

    Science.gov (United States)

    Koike, Soichi; Furui, Yuji

    2013-04-01

    The objective of this study was to examine the effects of home-based long-term care insurance services on an increase in care need levels and discuss its policy implications. We analyzed care need certification and long-term care service use data for 3006 non-institutionalized elderly persons in a Tokyo ward effective as of October 2009 and 2010. Individual care need assessment intervals and their corresponding changes in care need level were calculated from data at two data acquisition points of care need assessment. Those who had been certified but did not use any long-term care insurance service were defined as the control group. The Cox proportionate hazard model was used to determine whether the use of a long-term care insurance service is associated with increased care need level. After adjusting for sex, age, and care need level, the hazard ratio for the probability of increased care need level among service users was calculated as 0.75 (95% confidence interval, 0.64-0.88; p Home-based long-term care service use may prevent an increase in care need level. Administrative data on care need certification and services use could be an effective tool for evaluating the long-term care insurance system. Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.

  1. Towards meeting the research needs of Australian cancer consumers

    Directory of Open Access Journals (Sweden)

    Saunders Carla

    2012-12-01

    Full Text Available Abstract Background There is a growing amount of literature to support the view that active involvement in research by consumers, especially informed and networked consumers, benefits the quality and direction of research itself, the research process and, most importantly, people affected by cancer. Our exploratory project focuses on identifying their priorities and developing a process to assess the research needs of Australian cancer consumers which may be useful beyond the cancer scenario. Methods This project was consumer initiated, developed and implemented, with the assistance of a leading Australian cancer consumer advocacy group, Cancer Voices NSW (CVN. Such direct involvement is unusual and ensures that the priorities identified, and the process itself, are not influenced by other interests, regardless how well-intentioned they may be. The processes established, and data collection via a workshop, followed by a questionnaire to confirm and prioritise findings, and comparison with a similar UK exercise, are detailed in this paper. Results Needs across five topic areas reflecting cancer control domains (prevention and risk; screening and diagnosis; treatment; survivorship; and end of life were identified. Cancer consumers high priority research needs were found to be: earlier diagnosis of metastatic cancers; the extent of use of best practice palliative care guidelines; identifying barriers to cancer risk behaviour change; and environmental, nutrition and lifestyle risk factors for people with cancer. A process for identifying consumers’ research priorities was developed and applied; this may be useful for further investigation in this under-studied area. Conclusion The findings provide a model for developing a consumer derived research agenda in Australia which can be used to inform the strategic direction of cancer research. Consumers have been seeking a workable method to achieve this and have worked in collaboration with a major

  2. Defining Remoteness from Health Care: Integrated Research on Accessing Emergency Maternal Care in Indonesia

    Directory of Open Access Journals (Sweden)

    Bronwyn A Myers

    2015-07-01

    Full Text Available The causes of maternal death are well known, and are largely preventable if skilled health care is received promptly. Complex interactions between geographic and socio-cultural factors affect access to, and remoteness from, health care but research on this topic rarely integrates spatial and social sciences. In this study, modeling of travel time was integrated with social science research to refine our understanding of remoteness from health care. Travel time to health facilities offering emergency obstetric care (EmOC and population distribution were modelled for a district in eastern Indonesia. As an index of remoteness, the proportion of the population more than two hours estimated travel time from EmOC was calculated. For the best case scenario (transport by ambulance in the dry season, modelling estimated more than 10,000 fertile aged women were more than two hours from EmOC. Maternal mortality ratios were positively correlated with the remoteness index, however there was considerable variation around this relationship. In a companion study, ethnographic research in a subdistrict with relatively good access to health care and high maternal mortality identified factors influencing access to EmOC, including some that had not been incorporated into the travel time model. Ethnographic research provided information about actual travel involved in requesting and reaching EmOC. Modeled travel time could be improved by incorporating time to deliver request for care. Further integration of social and spatial methods and the development of more dynamic travel time models are needed to develop programs and policies to address these multiple factors to improve maternal health outcomes.

  3. The needs of the relatives in the adult intensive care unit: Cultural adaptation and psychometric properties of the Chilean-Spanish version of the Critical Care Family Needs Inventory.

    Science.gov (United States)

    Rojas Silva, Noelia; Padilla Fortunatti, Cristobal; Molina Muñoz, Yerko; Amthauer Rojas, Macarena

    2017-12-01

    The admission of a patient to an intensive care unit is an extraordinary event for their family. Although the Critical Care Family Needs Inventory is the most commonly used questionnaire for understanding the needs of relatives of critically ill patients, no Spanish-language version is available. The aim of this study was to culturally adapt and validate theCritical Care Family Needs Inventory in a sample of Chilean relatives of intensive care patients. The back-translated version of the inventory was culturally adapted following input from 12 intensive care and family experts. Then, it was evaluated by 10 relatives of recently transferred ICU patients and pre-tested in 10 relatives of patients that were in the intensive care unit. Psychometric properties were assessed through exploratory factor analysis and Cronbach's α in a sample of 251 relatives of critically ill patients. The Chilean-Spanish version of the Critical Care Family Needs Inventoryhad minimal semantic modifications and no items were deleted. A two factor solution explained the 31% of the total instrument variance. Reliability of the scale was good (α=0.93), as were both factors (α=0.87; α=0.93). The Chilean-Spanish version of theCritical Care Family Needs Inventory was found valid and reliable for understanding the needs of relatives of patients in acute care settings. Copyright © 2017 Elsevier Ltd. All rights reserved.

  4. Inernational research in health care management: its need in the 21st century, methodological challenges, ethical issues, pitfalls, and practicalities.

    Science.gov (United States)

    Buttigieg, Sandra C; Rathert, Cheryl; D'Aunno, Thomas A; Savage, Grant T

    2015-01-01

    This commentary argues in favor of international research in the 21st century. Advances in technology, science, communication, transport, and infrastructure have transformed the world into a global village. Industries have increasingly adopted globalization strategies. Likewise, the health sector is more internationalized whereby comparisons between diverse health systems, international best practices, international benchmarking, cross-border health care, and cross-cultural issues have become important subjects in the health care literature. The focus has now turned to international, collaborative, cross-national, and cross-cultural research, which is by far more demanding than domestic studies. In this commentary, we explore the methodological challenges, ethical issues, pitfalls, and practicalities within international research and offer possible solutions to address them. The commentary synthesizes contributions from four scholars in the field of health care management, who came together during the annual meeting of the Academy of Management to discuss with members of the Health Care Management Division the challenges of international research. International research is worth pursuing; however, it calls for scholarly attention to key methodological and ethical issues for its success. This commentary addresses salient issues pertaining to international research in one comprehensive account.

  5. Challenges and Priorities for Pediatric Critical Care Clinician-Researchers in Low- and Middle-Income Countries

    Directory of Open Access Journals (Sweden)

    Amelie O. von Saint André-von Arnim

    2017-12-01

    Full Text Available IntroductionThere is need for more data on critical care outcomes and interventions from low- and middle-income countries (LMIC. Global research collaborations could help improve health-care delivery for critically ill children in LMIC where child mortality rates remain high.Materials and methodsTo inform the role of collaborative research in health-care delivery for critically ill children in LMIC, an anonymous online survey of pediatric critical care (PCC physicians from LMIC was conducted to assess priorities, major challenges, and potential solutions to PCC research. A convenience sample of 56 clinician-researchers taking care of critically ill children in LMIC was targeted. In addition, the survey was made available on a Latin American PCC website. Descriptive statistics were used for data analysis.ResultsThe majority of the 47 survey respondents worked at urban, public teaching hospitals in LMIC. Respondents stated their primary PCC research motivations were to improve clinical care and establish guidelines to standardize care. Top challenges to conducting research were lack of funding, high clinical workload, and limited research support staff. Respondent-proposed solutions to these challenges included increasing research funding options for LMIC, better access to mentors from high-income countries, research training and networks, and higher quality medical record documentation.ConclusionLMIC clinician-researchers must be better empowered and resourced to lead and influence the local and global health research agenda for critically ill children. Increased funding options, access to training and mentorship in research methodology, and improved data collection systems for LMIC PCC researchers were recognized as key needs for success.

  6. Care coordination, the family-centered medical home, and functional disability among children with special health care needs.

    Science.gov (United States)

    Litt, Jonathan S; McCormick, Marie C

    2015-01-01

    Children with special health care needs (CSHCN) are at increased risk for functional disabilities. Care coordination has been shown to decrease unmet health service use but has yet been shown to improve functional status. We hypothesize that care coordination services lower the odds of functional disability for CSHCN and that this effect is greater within the context of a family-centered medical home. A secondary objective was to test the mediating effect of unmet care needs on functional disability. Our sample included children ages 0 to 17 years participating the 2009-2010 National Survey of Children with Special Health Care Needs. Care coordination, unmet needs, and disability were measured by parent report. We used logistic regression models with covariate adjustment for confounding and a mediation analysis approach for binary outcomes to assess the effect of unmet needs. There were 34,459 children in our sample. Care coordination was associated with lower odds of having a functional disability (adjusted odds ratio 0.82, 95% confidence interval 0.77, 0.88). This effect was greater for care coordination in the context of a medical home (adjusted odds ratio 0.71, 95% confidence interval 0.66, 0.76). The relationship between care coordination and functional disability was mediated by reducing unmet services. Care coordination is associated with lower odds of functional disability among CSHCN, especially when delivered in the setting of a family-centered medical home. Reducing unmet service needs mediates this effect. Our findings support a central role for coordination services in improving outcomes for vulnerable children. Copyright © 2015 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.

  7. Round table: Measuring and optimizing the impact of European health care research on policy and practice.

    NARCIS (Netherlands)

    Jong, J. de; Azzopardi Muscat, N.

    2013-01-01

    With health care systems becoming increasingly focused on effectiveness and efficiency, it is a logical development that the same requirements apply more and more to research production in the health care field. Health care research needs to show that investments are well spent and that it produces

  8. Dignity-conserving care actions in palliative care: an integrative review of Swedish research.

    Science.gov (United States)

    Harstäde, Carina Werkander; Blomberg, Karin; Benzein, Eva; Östlund, Ulrika

    2018-03-01

    Previous research has proposed that persons in need of palliative care often have a loss of functions and roles that affects social and existential self-image. Moreover, these individuals also commonly suffer from complex multisymptoms. This, together with the situation of facing an impending death, can lead to a loss of dignity. Therefore, supporting these persons' dignity is a crucial challenge for professional nurses. The 'Dignity Care Intervention' addresses the multidimensionality of dignity by identifying patients' dignity-related concerns and suggests care actions to address them. At the present, the Dignity Care Intervention is adapted for implementation in Swedish care settings. Because expressions of dignity are influenced by culture, and an overview of care actions in a Swedish context is lacking, this integrative review aimed to find suggestions from Swedish research literature on what kind of care actions can preserve dignity. An integrative literature review was conducted using the databases SwePub and SweMed+. Articles published from 2006 to 2015 and theses published from 2000 to 2015 were searched for using the terms 'dignity' and 'palliative care'. Result sections of articles and theses were reviewed for dignity-conserving care actions synthesised by thematic analysis and categorised under themes and subthemes in Chochinov's model of dignity. Fifteen articles and 18 theses were included together providing suggestions of care actions in all themes and subthemes in the dignity model. Suggested care actions included listening, communication, information, symptom control, facilitating daily living and including patients in decision-making. Additionally, nurses' perceptiveness towards the patients was a core approach. The review offers culturally relevant suggestions on how to address specific dignity-related concerns. The adapted Dignity Care Intervention will be a way for Swedish nurses to provide person-centred palliative care that will conserve

  9. Development of a hospital-based care coordination program for children with special health care needs.

    Science.gov (United States)

    Petitgout, Janine M; Pelzer, Daniel E; McConkey, Stacy A; Hanrahan, Kirsten

    2013-01-01

    A hospital-based Continuity of Care program for children with special health care needs is described. A family-centered team approach provides care coordination and a medical home. The program has grown during the past 10 years to include inpatients and outpatients from multiple services and outreach clinics. Improved outcomes, including decreased length of stay, decreased cost, and high family satisfaction, are demonstrated by participants in the program. Pediatric nurse practitioners play an important role in the medical home, collaborating with primary care providers, hospital-based specialists, community services, and social workers to provide services to children with special health care needs. Copyright © 2013 National Association of Pediatric Nurse Practitioners. Published by Mosby, Inc. All rights reserved.

  10. VA Health Care: Processes to Evaluate, Implement, and Monitor Organizational Structure Changes Needed

    Science.gov (United States)

    2016-09-01

    their families , such as medallions and markers for headstones that signify veterans’ service. Page 3 GAO-16-803 VHA Organizational ... Research Oversight, and Chief Nursing Page 8 GAO-16-803 VHA Organizational Structure Officer. Also, the Chief Financial Officer and...VA HEALTH CARE Processes to Evaluate, Implement, and Monitor Organizational Structure Changes Needed Report to

  11. The needs of patient family members in the intensive care unit in Kigali Rwanda

    Directory of Open Access Journals (Sweden)

    Petra Brysiewicz

    2014-07-01

    Full Text Available Background. The admission of a relative to an intensive care unit (ICU is a stressful experience for family members. There has been limited research addressing this issue in Kigali, Rwanda.Objective. To explore the needs of patient family members admitted into an ICU in Kigali, Rwanda.Methods. This study used a quantitative exploratory design focused on exploring the needs of patient family members in ICU at one hospital in Kigali, Rwanda. Family members (N=40 were recruited using the convenience sampling strategy. The Critical Care Family Needs Inventory was used to collect relevant data.Results. The participants identified various needs to be met for the family during the patient’s admission in ICU. The most important was the need for assurance, followed by the need for comfort, information, proximity and lastly support. Three additional needs specific to this sample group were also identified, related to resource constraints present in the hospital where the study was carried out.Conclusion. These results offer insight for nurses and other healthcare professionals as to what the important needs are that must be considered for the patient family members in ICUs within a resource-constrained environment.

  12. Knowledge Transfer and Dissemination of Advanced Practice Nursing Information and Research to Acute-Care Administrators.

    Science.gov (United States)

    Carter, Nancy; Dobbins, Maureen; Peachey, Gladys; Hoxby, Heather; Ireland, Sandra; Akhtar-Danesh, Noori; DiCenso, Alba

    2014-03-01

    The objective of this study was to ascertain the information needs and knowledge-dissemination preferences of acute-care administrators with respect to advanced practice nursing (APN). Supportive leadership is imperative for the success of APN roles and administrators need up-to-date research evidence and information, but it is unclear what the information needs of administrators are and how they prefer to receive the information. A survey tool was developed from the literature and from the findings of a qualitative study with acute-care leaders. Of 107 surveys distributed to nursing administrators in 2 teaching hospitals, 79 (73.8%) were returned. Just over half of respondents reported wanting APN information related to model of care and patient and systems outcomes of APN care; the majority expressed a preference for electronic transmission of the information. Researchers need multiple strategies for distributing context-specific APN evidence and information to nursing administrators. Copyright© by Ingram School of Nursing, McGill University.

  13. Why Do We Need to Study the Fundamentals of Care?

    Science.gov (United States)

    Kitson, Alison

    2016-01-01

    This paper makes the case for revisiting our understanding and valuing of basic or fundamental nursing care. Despite the interest in movements such as the person-centred or patient-centred care agenda, there continues to be concern about patient safety, quality of experience and getting the simple things right. Part of this debate is around whether meeting patients' fundamental care needs (such as personal hygiene, elimination and eating and drinking) within acute care settings constitutes legitimate nursing responsibilities or whether these needs ought to become part of "hotel services" executed by care assistants with elementary training or, as in many lower-income health systems, undertaken by relatives. Copyright © 2016 Longwoods Publishing.

  14. Training needs of nurses and social workers in the end-of-life care for people with intellectual disabilities: a national survey.

    Science.gov (United States)

    Bekkema, Nienke; de Veer, Anke J E; Albers, Gwenda; Hertogh, Cees M P M; Onwuteaka-Philipsen, Bregje D; Francke, Anneke L

    2014-04-01

    Nurses and social workers caring for people with intellectual disabilities are increasingly confronted with clients in need of end-of-life care. Previous studies, however, suggest that professionals in intellectual disability care services lack knowledge and experience concerning end-of-life care. Moreover, the proportion of nurses within the staff of intellectual disability services has declined in recent years, while the proportion of social workers has increased, which may have consequences for the quality of end-of-life care. To gain insight into the quality of end-of-life care, past vocational training, training needs and expert consultation opportunities of nurses and social workers working in intellectual disability care services. Survey questionnaire study conducted in the Netherlands. Intellectual disability care services. The study sample was recruited from an existing nationally representative research panel of care professionals. In 2011, all 181 nurses and social workers in the research panel who worked in intellectual disability care services were sent our survey questionnaire. Postal survey addressing education, views and needs regarding end-of-life care. The response was 71.8%. Respondents positively evaluated the quality of end-of-life care. However, most respondents felt inadequately trained in end-of-life care issues. Nurses had received more training in end-of-life care and had fewer training needs than social workers. Respondents wished for additional training, especially in supporting clients in dealing with the impending death and farewell process. Half of the respondents were unaware of the availability of external consultation facilities. This study shows that although nurses and social workers positively appraise the quality of end-of-life care for people with intellectual disabilities, the majority feel inadequately trained to provide good end-of-life care. As the number of people with intellectual disability in need of end-of-life care

  15. Which research is needed to support clinical decision-making on integrative medicine?- Can comparative effectiveness research close the gap?

    Science.gov (United States)

    Witt, Claudia M; Huang, Wen-jing; Lao, Lixing; Bm, Berman

    2012-10-01

    In clinical research on complementary and integrative medicine, experts and scientists have often pursued a research agenda in spite of an incomplete understanding of the needs of end users. Consequently, the majority of previous clinical trials have mainly assessed the efficacy of interventions. Scant data is available on their effectiveness. Comparative effectiveness research (CER) promises to support decision makers by generating evidence that compares the benefits and harms of the best care options. This evidence, more generalizable than the evidence generated by traditional randomized controlled trials (RCTs), is better suited to inform real-world care decisions. An emphasis on CER supports the development of the evidence base for clinical and policy decision-making. Whereas in most areas of complementary and integrative medicine data on comparative effectiveness is scarce, available acupuncture research already contributes to CER evidence. This paper will introduce CER and make suggestions for future research.

  16. [Which research is needed to support clinical decision-making on integrative medicine? Can comparative effectiveness research close the gap?].

    Science.gov (United States)

    Witt, Claudia M; Huang, Wen-jing; Lao, Lixing; Berman, Brian M

    2013-08-01

    In clinical research on complementary and integrative medicine, experts and scientists have often pursued a research agenda in spite of an incomplete understanding of the needs of end users. Consequently, the majority of previous clinical trials have mainly assessed the efficacy of interventions. Scant data is available on their effectiveness. Comparative effectiveness research (CER) promises to support decision makers by generating evidence that compares the benefits and harms of best care options. This evidence, more generalizable than evidence generated by traditional randomized clinical trials (RCTs), is better suited to inform real-world care decisions. An emphasis on CER supports the development of the evidence base for clinical and policy decision-making. Whereas in most areas of complementary and integrative medicine data on CER is scarce, available acupuncture research already contributes to CER evidence. This paper will introduce CER and make suggestions for future research.

  17. 'Posture for Learning': meeting the postural care needs of children with physical disabilities in mainstream primary schools in England--a research into practice exploratory study.

    Science.gov (United States)

    Hutton, Eve; Coxon, Kirstie

    2011-01-01

     To explore teachers and teaching assistants' (TAs) views of how to manage the postural care needs of children with physical disabilities (PD) in mainstream primary schools, with the aim of developing strategies to support teachers and assistants in this role.  Qualitative data were gathered from a purposive sample of four primary schools in one county in the U.K. Individual and focus group interviews with 36 teachers and TAs were carried out and used to generate an explanatory framework around their experiences of managing the postural care needs of children with PD.  Teachers and TAs in schools were found to have limited understanding of postural management. Very few had personal experience of the benefits of postural care--instead, most appeared to think in terms of 'doing' rather than 'knowing' about postural care. When implementing therapy programmes, teaching staff followed therapists' instructions carefully, but did not understand the purpose of their actions. Participants described the emotional impact of caring for a child with PD and expressed anxieties about causing discomfort when using equipment such as specialist seating and standing frames. Equipment was viewed as bulky, uncomfortable and restrictive and not suited to the school environment. When asked which kinds of support would be valuable, participants identified practical solutions such as additional space or resources. Based on these findings, therapists, specialist teachers and parents developed an 'A-Z of postural care'. This information resource aimed to address the gaps in knowledge and understanding highlighted by teachers and TAs in the interviews and to acknowledge their anxieties when teaching and caring for children with PD. Stakeholder involvement in all aspects of the project from setting the research question to the development of the A-Z resource has assisted in the dissemination of the resource and its integration into the mainstream school system within the county.

  18. Pediatric information seeking behaviour, information needs, and information preferences of health care professionals in general emergency departments: Results from the Translating Emergency Knowledge for Kids (TREKK) Needs Assessment.

    Science.gov (United States)

    Scott, Shannon D; Albrecht, Lauren; Given, Lisa M; Hartling, Lisa; Johnson, David W; Jabbour, Mona; Klassen, Terry P

    2018-01-01

    The majority of children requiring emergency care are treated in general emergency departments (EDs) with variable levels of pediatric care expertise. The goal of the Translating Emergency Knowledge for Kids (TREKK) initiative is to implement the latest research in pediatric emergency medicine in general EDs to reduce clinical variation. To determine national pediatric information needs, seeking behaviours, and preferences of health care professionals working in general EDs. An electronic cross-sectional survey was conducted with health care professionals in 32 Canadian general EDs. Data were collected in the EDs using the iPad and in-person data collectors. Total of 1,471 surveys were completed (57.1% response rate). Health care professionals sought information on children's health care by talking to colleagues (n=1,208, 82.1%), visiting specific medical/health websites (n=994, 67.7%), and professional development opportunities (n=941, 64.4%). Preferred child health resources included protocols and accepted treatments for common conditions (n=969, 68%), clinical pathways and practice guidelines (n=951, 66%), and evidence-based information on new diagnoses and treatments (n=866, 61%). Additional pediatric clinical information is needed about multisystem trauma (n=693, 49%), severe head injury (n=615, 43%), and meningitis (n=559, 39%). Health care professionals preferred to receive child health information through professional development opportunities (n=1,131, 80%) and printed summaries (n=885, 63%). By understanding health care professionals' information seeking behaviour, information needs, and information preferences, knowledge synthesis and knowledge translation initiatives can be targeted to improve pediatric emergency care. The findings from this study will inform the following two phases of the TREKK initiative to bridge the research-practice gap in Canadian general EDs.

  19. Need for and use of family leave among parents of children with special health care needs.

    Science.gov (United States)

    Chung, Paul J; Garfield, Craig F; Elliott, Marc N; Carey, Colleen; Eriksson, Carl; Schuster, Mark A

    2007-05-01

    Parents of children with special health care needs are especially vulnerable to work-family conflicts that family leave benefits might help resolve. We examined leave-taking among full-time-employed parents of children with special health care needs. We identified all children with special health care needs in 2 large inpatient/outpatient systems in Chicago, Illinois, and Los Angeles, California, and randomly selected 800 per site. From November 2003 to January 2004, we conducted telephone interviews with 1105 (87% of eligible and successfully contacted) parents. Among the sample's 574 full-time-employed parents, we examined whether leave benefits predicted missing any work for child illness, missing >4 weeks for child illness, and ability to miss work whenever their child needed them. Forty-eight percent of full-time-employed parents qualified for federal Family and Medical Leave Act benefits; 30% reported employer-provided leave benefits (not including sick leave/vacation). In the previous year, their children averaged 20 missed school/child care days, 12 doctor/emergency department visits, and 1.7 hospitalizations. Although 81% of parents missed work for child illness, 41% reported not always missing work when their child needed them, and 40% of leave-takers reported returning to work too soon. In multivariate regressions, parents who were eligible for Family and Medical Leave Act benefits and aware of their eligibility had 3.0 times greater odds of missing work for child illness than ineligible parents. Parents with >4 weeks of employer-provided leave benefits had 4.7 times greater odds of missing >4 weeks than parents without benefits. Parents with paid leave benefits had 2.8 times greater odds than other parents of missing work whenever their child needed them. Full-time-employed parents of children with special health care needs experience severe work-family conflicts. Although most have leave benefits, many report unmet need for leave. Access to Family and

  20. Spiritual needs in health care settings: a qualitative meta-synthesis of clients' perspectives.

    Science.gov (United States)

    Hodge, David R; Horvath, Violet E

    2011-10-01

    Spiritual needs often emerge in the context of receiving health or behavioral health services. Yet, despite the prevalence and salience of spiritual needs in service provision, clients often report their spiritual needs are inadequately addressed. In light of research suggesting that most social workers have received minimal training in identifying spiritual needs, this study uses a qualitative meta-synthesis (N=11 studies) to identify and describe clients'perceptions of their spiritual needs in health care settings. The results revealed six interrelated themes: (1) meaning, purpose, and hope; (2) relationship with God; (3) spiritual practices; (4) religious obligations; (5) interpersonal connection; and (6) professional staff interactions. The implications of the findings are discussed as they intersect social work practice and education.

  1. What is the best care for community-dwelling dependent adults? Sources of care and perception of unmet needs in Spain

    Directory of Open Access Journals (Sweden)

    Rogero-García, Jesús

    2014-08-01

    Full Text Available The objectives of this study in the Spanish context are: (1 to identify what source of care (informal, private or public care achieves the lowest perception of unmet needs amongst dependent adults and (2 to identify which factors are associated with a greater perception of unmet needs within each source of care. This research is based on a sample of 4,766 dependent adults who completed the 2008 Survey on Disability, Personal Autonomy and Dependency Situations (EDAD. Dependent adults who received only paid care were less likely to perceive unmet needs compared to those who received other types of care. Dependents who received public care were more likely to perceive unmet needs. Perception of unmet needs is related to the characteristics of the dependent adults, the primary carers and the caregiving context. The results suggest that policy design must not assume that dependent people prefer family care to other types of care and demonstrate that public care is perceived as unsatisfactory.Los objetivos de este trabajo son: (1 identificar el proveedor de cuidado (informal, privado o público que consigue una menor percepción de necesidades no cubiertas entre los adultos dependientes en España, (2 identificar qué factores se relacionan con una mayor percepción de necesidades no cubiertas en cada situación, atendiendo al proveedor de cuidado. Se analizó una muestra de 4.766 adultos dependientes de la Encuesta sobre Discapacidades, Autonomía personal y situaciones de Dependencia (EDAD 2008. Los adultos dependientes que recibieron únicamente cuidado privado tuvieron menos probabilidades de percibir sus necesidades no cubiertas, en comparación con quienes recibieron cualquier otro tipo de cuidado. Quienes recibieron cuidado solo de servicios sociales tuvieron más probabilidades de percibir sus necesidades como no cubiertas. La percepción de necesidades no cubiertas está relacionada con las características de la persona dependiente, del

  2. What do we know about skin-hygiene care for patients with bariatric needs? Implications for nursing practice.

    Science.gov (United States)

    Cowdell, Fiona; Radley, Kathy

    2014-03-01

    This article presents a discussion of the current state of knowledge about bariatric skin-hygiene care and whether this is sufficient to underpin evidence-based nursing practice. The challenges of providing bariatric skin-hygiene care are highlighted and include managing specific skin changes with associated risk of skin breakdown and practical management needs. The risk of skin breakdown is high and can have a devastating impact on well-being and increased treatment costs. A four-stage search strategy included: (i) literature search using electronic databases from inception-May 2013; (ii) hand search of selected journals; (iii) review of internet-based guidelines, policies or protocols and (iv) contact with clinical experts. There is a dearth of robust evidence on bariatric skin-hygiene care. Whilst a range of information and guidelines exist, these are generally based on expert opinion and often used only in a local context. Nurses are increasingly faced with the challenge of providing skin-hygiene care for patients with bariatric needs. At present, care is largely based on custom and practice or clinical opinion; this limits capacity to provide optimum evidence-based nursing care. As the prevalence of people needing bariatric skin-hygiene care continues to increase, there is a lack of evidence to inform interventions and hence a growing need for further research in this challenging clinical area to help nurses and patients select the best possible interventions that will meet individual personal-hygiene needs and preserve skin integrity. © 2013 John Wiley & Sons Ltd.

  3. An evaluation of rural health care research.

    Science.gov (United States)

    Kane, R; Dean, M; Solomon, M

    1979-05-01

    Reviews the state of the art of rural health research and evaluation in the U.S. with particular emphasis on the questions of access, health personnel, and financing. The current state of knowledge both in the published and unpublished literature in each area is summarized and a series of unresolved issues is proposed. A strategy for further research to include the various types of rural health care programs is described. Major findings suggest that, although rural populations do have somewhat less access to care than do urban populations, our ability to quantify precisely the extent and importance of this discrepancy is underdeveloped. Despite a substantial investment in a variety of rural health care programs there is inadequate information as to their effectiveness. Programs designed to increase the supply of health personnel to rural areas have met with mixed success. Sites staffed by National Health Service Corps personnel show consistently lower productivity than do sites under other sponsorship. Nonphysician personnel (physician assistants and nurse practitioners) offer a promising source of primary care for rural areas: recent legislation that reimburses such care should increase their utilization. A persistent problem is the expectation (often a mandate) incorporated into many rural health care demonstration efforts that the programs become financially self-sufficient in a finite period of time. Self-sufficiency is a function of utilization, productivity, and the ability to recover charges for services. In many instances stringent enforcement of the self-sufficiency requirement may mean those who need services most will be least likely to receive them.

  4. Supportive care needs in Hong Kong Chinese women confronting advanced breast cancer.

    Science.gov (United States)

    Au, Angel; Lam, Wendy; Tsang, Janice; Yau, Tsz-kok; Soong, Inda; Yeo, Winnie; Suen, Joyce; Ho, Wing M; Wong, Ka-yan; Kwong, Ava; Suen, Dacita; Sze, Wing-Kin; Ng, Alice; Girgis, Afaf; Fielding, Richard

    2013-05-01

    Women with advanced breast cancer (ABC) are living longer, so understanding their needs becomes important. This cross-sectional study investigated the type and extent of unmet supportive care needs in Hong Kong Chinese women with advanced breast cancer. Face-to-face interviews were conducted among women with stage III or stage IV disease mostly awaiting chemotherapy (76%) to identify unmet needs using the Supportive Care Needs Survey Short Form, psychological morbidity using the Hospital Anxiety and Depression Scale, symptom distress using the Memorial Symptom Assessment Scale, and satisfaction with care using the Patient satisfaction questionnaire (PSQ-9). About 27-72% of 198/220 (90%) women (mean age = 53.4 ± 9.74 (standard deviation) years) identified needs from the health system, information, and patient support (HSIPS) domain as the top 15 most prevalent unmet needs. 'having one member of hospital staff with whom you can talk to about all aspect of your condition, treatment, and follow-up' was most cited by 72% of the patients, with remaining unmet needs addressing mostly desire for information. Unmet need strength did not differ between women with stage III and stage IV disease, whereas women with first time diagnosis reported greater health system and information unmet needs compared with women with recurrent disease. Stepwise multiple regression analyses revealed that symptom distress was consistently positively associated with all but sexuality need domains, whereas low satisfaction with care was associated with HSIPS (β = 3.270, p living (β = 2.810, p < 0.01) domains. Chinese women with ABC expressed need for continuity of care and improved information provision. High symptom distress was associated with lower levels of satisfaction with care. These unmet needs appear to reflect current care services shortcomings. Copyright © 2012 John Wiley & Sons, Ltd.

  5. Assessment of oral health needs and barriers to care in a Gullah community: Hollywood smiles.

    Science.gov (United States)

    Leite, Renata; Hudson, Christine; West, Lynn; Carpenter, Elizabeth; Andrews, Jeannette O

    2013-01-01

    To assess the oral health (OH) needs and barriers to OH care in Gullah African American communities. A community advisory board (CAB) was formed to guide the research study. Five focus groups (n = 27 participants) were conducted to explore the OH needs/barriers. Participants completed demographic surveys and participated in discussions facilitated by open-ended questions. All sessions were audio-recorded, transcribed and analyzed using NVivo8. Facilitators of OH included positive experiences and modeling. Fear and access to care were the most cited barriers. Tooth extraction was the dental treatment of choice. Intervention recommendations included improving clinic access, using the churches to socially influence receipt of OH care, providing group educational sessions with OH specialists, and having local "lay people" to provide support and help to navigate OH care systems. The design of a multilevel, culturally and locally relevant intervention may lead to a decrease in OH disparities in Gullah communities.

  6. Resolving controversies in hip fracture care: the need for large collaborative trials in hip fractures

    NARCIS (Netherlands)

    Bhandari, Mohit; Sprague, Sheila; Schemitsch, Emil H.; Einhorn, Thomas; Guyatt, Gordon H.; Haidukewych, George; Keating, John; Koval, Kenneth; Rosen, Clifford; Swiontkowski, Marc; Tornetta, Paul; Walter, Stephen D.; Motsitsi, Silas; Pei, Fuxing; Yang, Tian-fu; Zhou, Zong-ke; Arora, Shobha; Babhulkar, Sushrut; Bhargava, Rakesh; Desai, Mohan M.; Dhillon, Mandeep S.; Gill, Harpreet Singh; Goel, S. C.; Reddy, A. V. Gurava; Jain, Anil K.; Kalore, Niraj V.; Kammatkar, Nitin; Kumar, Vijay; Malhorta, Rajesh; Marthandam, S. S. K.; Pankaj, Amite; Patinharayil, Gopinathan; Rai, B. Sachidanand; Ramteke, Alankar Ambadas; Sancheti, Parag K.; Thakkar, Navin N.; Thomas, George S.; Robinson, Dror; Steinberg, Ely; Higuchi, Fujio; Kawamura, Sumito; Ohashi, Hirotsugu; Sawaguchi, Takeshi; Park, Myung-Sik; Yun, Ho Hyun; Poduval, Murali; Siddiqui, Ahmed; Chang, Je-Ken; Wang, Gwo-Jaw; Goslings, J. Carel

    2009-01-01

    Hip fractures are a significant cause of morbidity and mortality worldwide and the burden of disability associated with hip fractures globally vindicate the need for high-quality research to advance the care of patients with hip fractures. Historically, large, multi-centre randomized controlled

  7. Home care needs of patients with long-term conditions: literature review.

    NARCIS (Netherlands)

    Algera, M.; Francke, A.L.; Kerkstra, A.; Zee, J. van der

    2004-01-01

    Background: There is a widely felt need to improve the match between long-term patients' care needs and actual use of home care. As this match is not always adequate, it is important to know what factors influence it. Aim: The aim of this paper is to provide insight into long-term patients' need and

  8. Ancillary care in public health intervention research in low-resource settings: researchers' practices and decision-making.

    Science.gov (United States)

    Taylor, Holly A; Merritt, Maria W; Mullany, Luke C

    2011-09-01

    Little is known about researchers' practices regarding the provision of ancillary care (AC) in public health intervention studies they have conducted and the factors that influence their decisions about whether to provide ancillary care in low-resource settings. We conducted 52 in-person in-depth interviews with public health researchers. Data analysis was iterative and led to the identification of themes and patterns among themes. We found that researchers who conduct their research in the community setting are more likely to identify and plan for the AC needs of potential research subjects before a study begins, whereas those affiliated with a permanent facility are more likely to deliver AC to research subjects on an ad hoc basis. Our findings suggest that on the whole, at least for public health intervention research in low-resource settings, researchers conducting research in the community setting confront more complex ethical and operational challenges in their decision-making about AC than do researchers conducting facility-based studies.

  9. Continuing psychosocial care needs in children with new-onset epilepsy and their parents.

    Science.gov (United States)

    Shore, Cheryl P; Buelow, Janice M; Austin, Joan K; Johnson, Cynthia S

    2009-10-01

    Children with new-onset epilepsy and their parents have many psychosocial care needs, including concerns and fears and needs for information and support. No prospective studies address psychosocial care needs at 12 and 24 months after seizure onset. It is unknown if psychosocial care needs are associated with children's attitudes toward having epilepsy or with parental responses to their child's epilepsy. Our study addresses this knowledge gap. Members of 143 families took part in the study. Children were 8 to 14 years old and had at least two seizures. Parents and children completed Psychosocial Care Need Scales at 3, 6, 12, and 24 months after the first seizure. Children also completed the Child Attitude Toward Illness Scale, and parents completed the Parent Response to Child Illness scale. Data were analyzed using descriptive statistics and correlations. Although psychosocial care needs were highest at the 3-month data collection for both parents and children, some worries and concerns and needs for information and support persisted for 24 months. In children, more psychosocial care needs were associated with more negative attitudes toward having epilepsy. In parents, high psychosocial care needs were associated with a more negative impact on family life. A substantial number of parents and children have unmet psychosocial care needs that are associated with more negative child attitudes and a negative impact on family life, even 24 months after the onset of seizures. Nurses should assess both children and parents for these needs at every encounter with the healthcare system to address their needs.

  10. Doing Interdisciplinary Mixed Methods Health Care Research: Working the Boundaries, Tensions, and Synergistic Potential of Team-Based Research.

    Science.gov (United States)

    Hesse-Biber, Sharlene

    2016-04-01

    Current trends in health care research point to a shift from disciplinary models to interdisciplinary team-based mixed methods inquiry designs. This keynote address discusses the problems and prospects of creating vibrant mixed methods health care interdisciplinary research teams that can harness their potential synergy that holds the promise of addressing complex health care issues. We examine the range of factors and issues these types of research teams need to consider to facilitate efficient interdisciplinary mixed methods team-based research. It is argued that concepts such as disciplinary comfort zones, a lack of attention to team dynamics, and low levels of reflexivity among interdisciplinary team members can inhibit the effectiveness of a research team. This keynote suggests a set of effective strategies to address the issues that emanate from the new field of research inquiry known as team science as well as lessons learned from tapping into research on organizational dynamics. © The Author(s) 2016.

  11. Family care work: a policy-relevant research agenda.

    Science.gov (United States)

    Moen, Phyllis; DePasquale, Nicole

    2017-03-01

    This article addresses the need for policy-relevant research agendas on family care in transaction with formal care and public as well as organisational norms and policies in light of the crisis in caregiving for older adults. We propose a combined institutional and life-course theoretical approach, suggesting seven ways of organising scholarly enquiry to promote understanding of the changing nature of family care in the 21st century, inform policymakers' efforts at supporting family caregivers and improve caregivers' and care recipients' quality of life. These include: (1) moving beyond snapshots of individuals; (2) conducting comparative cross-cultural and crosscohort analyses; (3) documenting social heterogeneity, vulnerability and inequality; (4) capturing individuals' and families' adaptive strategies and cycles of control during the caregiving process; (5) investigating policy innovations and natural experiments; (6) assessing third parties as mediating institutions between regulatory environments and caregiving families; and (7) attending to the subjective meanings of care.

  12. Survival analysis of increases in care needs associated with dementia and living alone among older long-term care service users in Japan.

    Science.gov (United States)

    Lin, Huei-Ru; Otsubo, Tetsuya; Imanaka, Yuichi

    2017-08-15

    Japan is known for its long life expectancy and rapidly aging society that there are various demands of older adults need to be fulfilled with, and one of them is long-term care needs. Therefore, Japan implemented the Long-Term Care Insurance in year 2000 for citizens who are above 65-year old and citizens who are above 40-year old in needs of long-term care services. This study was undertaken to longitudinally examine the influence of dementia and living alone on care needs increases among older long-term care insurance service users in Japan. Long-term care insurance claims data were used to identify enrollees who applied for long-term care services between October 2010 and September 2011, and subjects were tracked until March 2015. A Kaplan-Meier survival analysis was conducted to examine increases in care needs over time in months. Cox regression models were used to examine the effects of dementia and living alone on care needs increases. The cumulative survival rates before care needs increased over the 4.5-year observation period were 17.6% in the dementia group and 31.9% in the non-dementia group. After adjusting for age, sex, care needs level, and status of living alone, the risk of care needs increases was found to be 1.5 times higher in the dementia group. Living alone was not a significant risk factor of care needs increases, but people with dementia who lived alone had a higher risk of care needs increases than those without dementia. Dementia, older age, the female sex, and lower care needs levels were associated with a higher risk of care needs increases over the study period. Among these variables, dementia had the strongest impact on care needs increases, especially in persons who lived alone.

  13. New 'patent accelerated care environment' aims to facilitate work flow, free up ED for acute care needs.

    Science.gov (United States)

    2012-02-01

    Faced with rising acuity levels and surging demand, Virginia Mason Medical Center modified the Clinical Decision Unit concept used in many EDs, and developed a new Patient Accelerated Care Environment (PACE) to care for observation patients, process patients for discharge, and to prepare patients for admission.The approach is designed to utilize ED beds for initial processing of patients, allowing resuscitative care if needed, and treating and releasing the patients with quick care needs. Using the Virginia Mason Production System, a methodology that is modeled after Toyota production techniques, developers designed an optimal work flow pattern and then built infrastructure to facilitate that process. All patients who present to the ED for care are seen by the ED team through a "team greet" approach. Approximately 35% to 40% of patients who come to the ED for care are transferred to the PACE unit. Patients assigned to the PACE unit typically remain there for 4 to 48 hours, depending on their care needs.

  14. The supportive care needs for prostate cancer patients in Sarawak.

    Science.gov (United States)

    Cheah, Whye Lian; Ling, Ngok Chuo; Chang, Kam Hock

    2016-02-01

    This cross-sectional study aimed to determine the prevalence of unmet supportive care needs among prostate cancer patients. The cross-sectional study was conducted among all prostate cancer patients at the Sarawak General Hospital. Interview was done using the Supportive Care Needs Survey-Short Form (SCNS-SF) and the Health Service Utilization Questionnaires (HSUQ). Data were analysed using Statistical Package for the Social Sciences (SPSS) 20. A total of ninety-five patients participated, with majority were aged 65 and above and of primary educational level. The two most frequently reported unmet supportive care needs were "informed about cancer which is under control or diminishing" and "informed about things you can do to help yourself to get well" under the domain Health System and Information. Respondents who were older (65 years and above) had significant lower unmet needs in psychology (P<0.01), and sexuality compared to the younger group below 65 years (P<0.01). Except for physical and daily living, respondents with primary school level had significant lower unmet needs in all domains compared to secondary school level. Respondents with known stages of cancer had higher unmet needs in all domains compared to those who did not know. Healthcare providers should provide more responsive, emotionally sensitive and client-centered care to patients with prostate cancer, particularly in the area of Health System and Information, and psychological support.

  15. Low back pain research priorities: a survey of primary care practitioners

    Directory of Open Access Journals (Sweden)

    Das Anurina

    2007-07-01

    Full Text Available Abstract Background Despite the large amount of time and money which has been devoted to low back pain research, successful management remains an elusive goal and low back pain continues to place a large burden on the primary care setting. One reason for this may be that the priorities for research are often developed by researchers and funding bodies, with little consideration of the needs of primary care practitioners. This study aimed to determine the research priorities of primary care practitioners who manage low back pain on a day-to-day basis. Methods A modified-Delphi survey of primary care practitioners was conducted, consisting of three rounds of questionnaires. In the first round, 70 practitioners who treat low back pain were each asked to provide up to five questions which they would like answered with respect to low back pain in primary care. The results were collated into a second round questionnaire consisting of 39 priorities, which were rated for importance by each practitioner on a likert-scale. The third round consisted of asking the practitioners to rank the top ten priorities in order of importance. Results Response rates for the modified-Delphi remained above 70% throughout the three rounds. The ten highest ranked priorities included the identification of sub-groups of patients that respond optimally to different treatments, evaluation of different exercise approaches in the management of low back pain, self-management of low back pain, and comparison of different treatment approaches by primary care professions treating low back pain. Conclusion Practitioners identified a need for more information on a variety of topics, including diagnosis, the effectiveness of treatments, and identification of patient characteristics which affect treatment and recovery.

  16. Community care worker perceptions of their roles in tuberculosis care and their information needs

    Directory of Open Access Journals (Sweden)

    Ida Okeyo

    2016-10-01

    Objective: To explore perceptions of CCWs of their role in TB care and TB information needs. Methods: CCWs working with TB patients were recruited from Grahamstown Hospice and local primary healthcare clinics in Grahamstown. Focus group discussions and semistructured interviews were conducted with 14 CCWs using a question guide. Data were thematically analysed. Results: Three themes emerged from data analysis. Firstly, altruism was identified as the major motivational factor, with a desire to help others often stimulated by previously caring for sick relatives. Some CCWs had experienced being patients needing care, which motivated them to become involved in offering patient care. Secondly, CCWs reported great fulfilment and pride in their work as they believed they made a meaningful impact on patients' lives and in the surrounding community, and were respected for this contribution. Thirdly, most identified a need for further training and access to additional information about TB, particularly MDR- and XDR-TB, in order to reinforce both their own knowledge and to educate patients about drug-resistant TB. Conclusion: CCWs were motivated and proud of their contribution to TB patient management and the education they provided to patients and to lay community members.Ongoing training was identified as a need, along with access to quality information materials to improve their knowledge and facilitate patient counselling.

  17. [Information needs of the health and diseases in users of healthcare services in Primary Care at Salamanca, Spain].

    Science.gov (United States)

    Bernad Vallés, Mercedes; Maderuelo Fernández, José Ángel; Moreno González, Pilar

    2016-01-01

    To learn, interpret and understand the information needs of health and disease in users of the healthcare services of the urban Primary Care of Salamanca. Qualitative research corresponding an exploratory qualitative/structural perspective. Primary Care. Urban area, Salamanca in 2007. Ten discussion groups, 2 composed of members of health-related associations and 8 primary care users, involved a total of 83 people. The structural variables considered are: gender, age, educational level and membership or not associations. Generate information to achieve information saturation in the discussion groups. Upon obtaining their informed consent, all subjects in the study participated in videotaped conversations, which were transcribed verbatim. Four researchers categorized the content, intentionality of discourse and developed the concept map. After categorization, triangulation and coding, content obtained was analysed with the NudistQ6 program. Informative content suggest four information needs: health and prevention, early diagnosis, first aid and disease. Different intentions (information needs, watching, claim and improvement) and needs profiles are detected as structural variables. Major information needs are relate to diagnosis, prognosis and therapeutic options. There is agreement between the groups that the information transmitted to the patient must be intelligible, updated and coordinated among the different professionals and care levels. Participants require information of a clinical nature to exercise their right to autonomy translating tendency to empower users as part of the social change. Copyright © 2014 Elsevier España, S.L.U. All rights reserved.

  18. European neonatal intensive care nursing research priorities: an e-Delphi study.

    Science.gov (United States)

    Wielenga, Joke M; Tume, Lyvonne N; Latour, Jos M; van den Hoogen, Agnes

    2015-01-01

    This study aimed to identify and prioritise neonatal intensive care nursing research topics across Europe using an e-Delphi technique. An e-Delphi technique with three questionnaire rounds was performed. Qualitative responses of round one were analysed by content analysis and research statements were generated to be ranged on importance on a scale of 1-6 (not important to most important). Neonatal intensive care units (NICUs) in 17 European countries. NICU clinical nurses, managers, educators and researchers (n=75). None. A list of 43 research statements in eight domains. The six highest ranking statements (≥5.0 mean score) were related to prevention and reduction of pain (mean 5.49; SD 1.07), medication errors (mean 5.20; SD 1.13), end-of-life care (mean 5.05; SD 1.18), needs of parents and family (mean 5.04; SD 1.23), implementing evidence into nursing practice (mean 5.02; SD 1.03), and pain assessment (mean 5.02; SD 1.11). The research domains were prioritised and ranked: (1) pain and stress; (2) family centred care; (3) clinical nursing care practices; (4) quality and safety; (5) ethics; (6) respiratory and ventilation; (7) infection and inflammation; and (8) professional issues in neonatal intensive care nursing. The results of this study might support developing a nursing research strategy for the nursing section of the European Society of Paediatric and Neonatal Intensive Care. In addition, this may promote more European researcher collaboratives for neonatal nursing research. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  19. Family Caregiver Factors Associated with Unmet Needs for Care of Older Adults.

    Science.gov (United States)

    Beach, Scott R; Schulz, Richard

    2017-03-01

    To examine caregiver factors associated with unmet needs for care of older adults. Population-based surveys of caregivers and older adult care recipients in the United States in 2011. 2011 National Health and Aging Trends Study and National Study of Caregiving. Family caregivers (n = 1,996) of community-dwelling older adults with disabilities (n = 1,366). Disabled care recipient reports of unmet needs for care in the past month with activities of daily living (ADLs; e.g., wet or soiled clothing), mobility (e.g., have to stay inside), or instrumental activities of daily living (IADLs; e.g., medication errors). Caregiver reported sociodemographic characteristics, caregiving intensity and tasks performed, health, and psychosocial effects. Of the care recipients, 44.3% reported at least one unmet need for care in the past month (38.2% ADL related, 14.6% IADL related). Younger caregivers, caregiving sons, caregivers not living with care recipients, and having supplemental paid caregivers were associated with more unmet needs. Caregivers with recipients reporting two or more unmet needs were more likely to spend more than 100 hours per month caregiving, help with skin care and wounds, report caregiving as emotionally and physically difficult, and report restricted participation in valued activities (all P family caregivers. Caregivers experiencing high levels of burden, stress, and negative physical and psychosocial impacts may provide substandard or poor care to older adults, which may be a risk factor for neglect. Clinicians caring for disabled older adults should assess their unmet needs and the capacity of caregivers to address them. © 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.

  20. Needs of home care services for the bedridden patient’s problems living in their home

    Directory of Open Access Journals (Sweden)

    Nuran Akdemir

    2011-03-01

    Full Text Available The study was carry out as an semi-experimental study to identify the difficulties confronted by bedridden patients with stroke to give them necessary counseling services and to improve models of home care service.Method: The research sample is composed of 38 patients discarged from Hacettepe University İbni Sina Hospital and Health Ministry Ankara Numune Hospital Neurology services following cerebro-vascular accident. The data derived from the research is evaluated through percentage usage. Patients included in the study were visited average 5 times during the research.Result: During the home visiting, it is found out that most of the patients were in need of information concerning insufficient hygienic care, other illnesses, use of medication, discharge system problems like constipation and diarhea and dietary/nutritional; it is also observed that they are experiencing psycho-social diffuculties. The study results put forward suggestions in realizing progression and to form model of systematic home care services.

  1. Informed consent in paediatric critical care research--a South African perspective.

    Science.gov (United States)

    Morrow, Brenda M; Argent, Andrew C; Kling, Sharon

    2015-09-09

    Medical care of critically ill and injured infants and children globally should be based on best research evidence to ensure safe, efficacious treatment. In South Africa and other low and middle-income countries, research is needed to optimise care and ensure rational, equitable allocation of scare paediatric critical care resources. Ethical oversight is essential for safe, appropriate research conduct. Informed consent by the parent or legal guardian is usually required for child research participation, but obtaining consent may be challenging in paediatric critical care research. Local regulations may also impede important research if overly restrictive. By narratively synthesising and contextualising the results of a comprehensive literature review, this paper describes ethical principles and regulations; potential barriers to obtaining prospective informed consent; and consent options in the context of paediatric critical care research in South Africa. Voluntary prospective informed consent from a parent or legal guardian is a statutory requirement for child research participation in South Africa. However, parents of critically ill or injured children might be incapable of or unwilling to provide the level of consent required to uphold the ethical principle of autonomy. In emergency care research it may not be practical to obtain consent when urgent action is required. Therapeutic misconceptions and sociocultural and language issues are also barriers to obtaining valid consent. Alternative consent options for paediatric critical care research include a waiver or deferred consent for minimal risk and/or emergency research, whilst prospective informed consent is appropriate for randomised trials of novel therapies or devices. We propose that parents or legal guardians of critically ill or injured children should only be approached to consent for their child's participation in clinical research when it is ethically justifiable and in the best interests of both

  2. The Educational Needs of Non-Specialist Breast Care Nurses.

    Science.gov (United States)

    Hicks, Carolyn; Fide, Jane

    2003-01-01

    Nurses working with breast cancer patients (n=119) identified general and cancer-specific continuing education needs; 13 of the 14 cancer-related needs ranked in the top 20. There were no differences between acute care and community nurses. Newly qualified nurses had significantly greater needs. (Contains 44 references.) (SK)

  3. A short form of the neonatal intensive care unit family needs inventory

    Directory of Open Access Journals (Sweden)

    Elisabete Alves

    2016-02-01

    Full Text Available ABSTRACT OBJECTIVE: The identification of parental needs in Neonatal Intensive Care Units is essential to design and implement family-centered care. This article aims to validate the Neonatal Intensive Care Units Family Needs Inventory for the Portuguese population, and to propose a Short Form. METHODS: A linguistic adaptation of the Neonatal Intensive Care Units Family Needs Inventory, a self-report scale with 56-items, was performed. The instrument was administered to 211 parents of infants hospitalized in all level III Neonatal Intensive Care Units in the North of Portugal, 15-22 days after admission (July of 2013-June of 2014. The number of items needed to achieve reliability close to 0.8 was calculated using by the Spearman-Brown formula. The global goodness of fit of the scale was evaluated using the comparative fit index. Construct validity was assessed through association of each dimension score with socio-demographic and obstetric characteristics. RESULTS: Exploratory factor analysis revealed two dimensions, one focused on parents' needs and another on the infant's needs. To compose the Short Form Inventory, items with ceiling effect were eliminated and 22 items were submitted to confirmatory analysis, which supported the existence of two dimensions (CFI = 0.925. The Short Form showed a high degree of reliability (alpha ≥ 0.76. Less educated and older parents more frequently attributed a significantly higher importance to parent-centered needs, while parents of multiples revealed a tendency to value infant-centered needs. CONCLUSIONS: The Short Form of the Neonatal Intensive Care Units Family Needs Inventory is a brief, simple, and valid instrument with a high degree of reliability. Further studies are needed to explore associations with practices of family-centered care.

  4. Educational Needs of Nurses in Intensive Care Unit for Poisoned Patients

    Directory of Open Access Journals (Sweden)

    Dadpour B

    2013-10-01

    Full Text Available Objectives: Poisoned patients are at risk of impaired ventilation in many situations. The purpose of this descriptive study was to investigate the impact of educational workshops on nurses' knowledge, confidence, and attitude in taking care of poisoned patients. Materials and Methods: This descriptive study was performed on 60 nursing staff in the intensive care unit (ICU for poisoned patients in Imam Reza (p hospital, Mashhad, Iran. Data was gathered by a researcher-designed questionnaire. Studied scales included perceived importance and novelty of educational meeting, matching with professional and educational needs, illustration of practical and knowledge weaknesses and strength and finally satisfaction in holding regular workshops annually. Two, half day workshops were held and various items were taught with various methods. The knowledge of participants was assessed by pretests and post-tests consisting of 12 items related to workshop topics. The impact of these educational meetings was evaluated and the results were analyzed by the SPSS software. Results: According to the results, workshops improved awareness of nurses about their weakness and strength points, professional knowledge and their interest and attention; likewise all participants had the same opinion about a strong need to hold similar workshops more than once and preferably 2 to 3 times annually. Conclusion: It seems that short educational courses in small groups for reviewing the old data and recent findings in the context of critical care are useful in order to promote the knowledge and skills of ICU staff in taking care of poisoned patients

  5. School Bus Transportation of Children With Special Health Care Needs.

    Science.gov (United States)

    O'Neil, Joseph; Hoffman, Benjamin D

    2018-05-01

    School systems are responsible for ensuring that children with special needs are safely transported on all forms of federally approved transportation provided by the school system. A plan to provide the most current and proper support to children with special transportation needs should be developed by the Individualized Education Program team, including the parent, school transportation director, and school nurse, in conjunction with physician orders and recommendations. With this statement, we provide current guidance for the protection of child passengers with specific health care needs. Guidance that applies to general school transportation should be followed, inclusive of staff training, provision of nurses or aides if needed, and establishment of a written emergency evacuation plan as well as a comprehensive infection control program. Researchers provide the basis for recommendations concerning occupant securement for children in wheelchairs and children with other special needs who are transported on a school bus. Pediatricians can help their patients by being aware of guidance for restraint systems for children with special needs and by remaining informed of new resources. Pediatricians can also play an important role at the state and local level in the development of school bus specifications. Copyright © 2018 by the American Academy of Pediatrics.

  6. Existential and spiritual needs in mental health care: an ethical and holistic perspective.

    Science.gov (United States)

    Koslander, Tiburtius; da Silva, António Barbosa; Roxberg, Asa

    2009-03-01

    This study illuminates how existential needs and spiritual needs are connected with health care ethics and individuals' mental health and well-being. The term existential needs is defined as the necessity of experiencing life as meaningful, whereas the term spiritual needs is defined as the need of deliverance from despair, guilt and/or sin, and of pastoral care. It discusses whether or not patients' needs are holistically addressed in Western health care systems that neglect patients' existential and spiritual needs, because of their biomedical view of Man which recognizes only patients' physical needs. It excludes a holistic health care which considers all needs, expressed by patients in treatment of mental illness. Addressing all needs is important for patients' improvement and recovery. For some patients, this is the only way to regain their mental health and well-being.

  7. Exploring training needs of nursing staff in rural Cretan primary care settings.

    Science.gov (United States)

    Markaki, Adelais; Alegakis, Athanasios; Antonakis, Nikos; Kalokerinou-Anagnostopoulou, Athena; Lionis, Christos

    2009-05-01

    The purpose of this exploratory study was to assess occupational profile, level of performance, and on-the-job training needs of nursing staff employed in all government primary health care centers in rural Crete, Greece. The translated, culturally adapted, and validated Greek version of the Training Needs Assessment questionnaire was used. There were no significant differences between 2-year degree graduates (LPNs) and 3- or 4-year degree graduates (RNs, midwives, and health visitors) in terms of importance for 28 of 30 assigned tasks, whereas level of performance did not differ in any tasks. Significant training needs were reported by all staff, mainly in research/audit and clinical skills. Systematic overview of skill deficits in relation to skill requirements should be implemented by regional health authorities to enhance delivery of on-the-job training targeting group-specific, local needs.

  8. Consensus principles for wound care research obtained using a Delphi process.

    Science.gov (United States)

    Serena, Thomas; Bates-Jensen, Barbara; Carter, Marissa J; Cordrey, Renee; Driver, Vickie; Fife, Caroline E; Haser, Paul B; Krasner, Diane; Nusgart, Marcia; Smith, Adrianne P S; Snyder, Robert J

    2012-01-01

    Too many wound care research studies are poorly designed, badly executed, and missing crucial data. The objective of this study is to create a series of principles for all stakeholders involved in clinical or comparative effectiveness research in wound healing. The Delphi approach was used to reach consensus, using a web-based survey for survey participants and face-to-face conferences for expert panel members. Expert panel (11 members) and 115 wound care researchers (respondents) drawn from 15 different organizations. Principles were rated for validity using 5-point Likert scales and comments. A 66% response rate was achieved in the first Delphi round from the 173 invited survey participants. The response rate for the second Delphi round was 46%. The most common wound care researcher profile was age 46-55 years, a wound care clinic setting, and >10 years' wound care research and clinical experience. Of the initial 17 principles created by the panel, only four principles were not endorsed in Delphi round 1 with another four not requiring revision. Of the 14 principles assessed by respondents in the second Delphi round, only one principle was not endorsed and it was revised; four other principles also needed revision based on the use of specific words or contextual use. Of the 19 final principles, three included detailed numbered lists. With the wide variation in design, conduct, and reporting of wound care research studies, it is hoped that these principles will improve the standard and practice of care in this field. © 2012 by the Wound Healing Society.

  9. Indian Psychiatric Society multicentric study on assessment of health-care needs of patients with severe mental illnesses

    OpenAIRE

    Grover, Sandeep; Avasthi, Ajit; Shah, Sandip; Lakdawala, Bhavesh; Chakraborty, Kaustav; Nebhinani, Naresh; Kallivayalil, Roy Abraham; Dalal, Pranob K.; Sinha, Vishal; Khairkar, Praveen; Mukerjee, Divya G.; Thara, R.; Behere, Prakash; Chauhan, Nidhi; Thirunavukarasu, M.

    2015-01-01

    Aim: To assess the health-care needs of the patients with severe mental disorders. Materials and Methods: Patients with the diagnosis of a severe mental disorder (schizophrenia and related psychotic disorders, bipolar disorder, recurrent depressive disorder, major depressive disorder and obsessive compulsive disorder) were assessed using Camberwell Assessment of Need-Research version (CAN-R) Scale and indigenously designed Supplementary Needs Assessment Scale (SNAS). Results: The study includ...

  10. Needing smart home technologies: the perspectives of older adults in continuing care retirement communities.

    Science.gov (United States)

    Courtney, Karen L; Demiris, George; Rantz, Marilyn; Skubic, Marjorie

    2008-01-01

    At present, the vast majority of older adults reside in the community. Though many older adults live in their own homes, increasing numbers are choosing continuing care retirement communities (CCRCs), which range from independent apartments to assisted living and skilled-nursing facilities. With predictions of a large increase in the segment of the population aged 65 and older, a subsequent increase in demand on CCRCs can be anticipated. With these expectations, researchers have begun exploring the use of smart home information-based technologies in these care facilities to enhance resident quality of life and safety, but little evaluation research exists on older adults' acceptance and use of these technologies. This study investigated the factors that influence the willingness of older adults living in independent and assisted living CCRCs to adopt smart home technology. Participants (n = 14) were recruited from community-dwelling older adults, aged 65 or older, living in one of two mid-western US CCRC facilities (independent living and assisted living type facilities). This study used a qualitative, descriptive approach, guided by principles of grounded theory research. Data saturation (or when no new themes or issues emerged from group sessions) occurred after four focus groups (n = 11 unique respondents) and was confirmed through additional individual interviews (n = 3). The findings from this study indicate that although privacy can be a barrier for older adults' adoption of smart home technology their own perception of their need for the technology can override their privacy concerns. Factors influencing self-perception of need for smart home technology, including the influence of primary care providers, are presented. Further exploration of the factors influencing older adults' perceptions of smart home technology need and the development of appropriate interventions is necessary.

  11. Cause, care, cure: research priorities for Alzheimer's disease and related dementias.

    Science.gov (United States)

    Stolee, Paul; Hillier, Loretta M; Cook, Sheila; Rockwood, Kenneth

    2011-12-01

    Part of Ontario's strategy on Alzheimer's disease and related dementias (ADRD) was to develop research priorities and recommend strategies for building research capacity. The process to achieve these objectives included an environmental scan, key informant interviews, surveys, and a consensus workshop; this process involved over 100 researchers, clinicians, persons with early dementia, and family caregivers. This article describes the process undertaken, key issues identified, and recommendations for research priorities and for building research capacity; and provides a strategic direction for dementia research in Ontario that is relevant for other jurisdictions. ADRD research in all aspects is required to advance knowledge of ADRD cause, care, and cure; gaps currently exist in understanding effective approaches to care and knowledge transfer. Capacity for high-calibre research hinges on maintaining attractive career paths for researchers, solid infrastructures, and strong partnerships. For research to inform policy and practice, better mechanisms are needed for knowledge exchange.

  12. "Fighting the system": Families caring for ventilator-dependent children and adults with complex health care needs at home

    Directory of Open Access Journals (Sweden)

    Nielsen Erik W

    2011-07-01

    Full Text Available Abstract Background An increasing number of individuals with complex health care needs now receive life-long and life-prolonging ventilatory support at home. Family members often take on the role of primary caregivers. The aim of this study was to explore the experiences of families giving advanced care to family members dependent on home mechanical ventilation. Methods Using qualitative research methods, a Grounded Theory influenced approach was used to explore the families' experiences. A total of 15 family members with 11 ventilator-dependent individuals (three children and eight adults were recruited for 10 in-depth interviews. Results The core category, "fighting the system," became the central theme as family members were asked to describe their experiences. In addition, we identified three subcategories, "lack of competence and continuity", "being indispensable" and "worth fighting for". This study revealed no major differences in the families' experiences that were dependent on whether the ventilator-dependent individual was a child or an adult. Conclusions These findings show that there is a large gap between family members' expectations and what the community health care services are able to provide, even when almost unlimited resources are available. A number of measures are needed to reduce the burden on these family members and to make hospital care at home possible. In the future, the gap between what the health care can potentially provide and what they can provide in real life will rapidly increase. New proposals to limit the extremely costly provision of home mechanical ventilation in Norway will trigger new ethical dilemmas that should be studied further.

  13. Feasibility and Pilot Studies in Palliative Care Research: A Systematic Review.

    Science.gov (United States)

    Jones, Terry A; Olds, Timothy S; Currow, David C; Williams, Marie T

    2017-07-01

    Feasibility and pilot study designs are common in palliative care research. Finding standard guidelines on the structure and reporting of these study types is difficult. In feasibility and pilot studies in palliative care research, to determine 1) how commonly a priori feasibility are criteria reported and whether results are subsequently reported against these criteria? and 2) how commonly are participants' views on acceptability of burden of the study protocol assessed? Four databases (OVID Medline, EMBASE, CINAHL, and PubMed via caresearch.com.au.) were searched. Search terms included palliative care, terminal care, advance care planning, hospice, pilot, feasibility, with a publication date between January 1, 2012 and December 31, 2013. Articles were selected and appraised by two independent reviewers. Fifty-six feasibility and/or pilot studies were included in this review. Only three studies had clear a priori criteria to measure success. Sixteen studies reported participant acceptability or burden with measures. Forty-eight studies concluded feasibility. The terms "feasibility" and "pilot" are used synonymously in palliative care research when describing studies that test for feasibility. Few studies in palliative care research outline clear criteria for success. The assessment of participant acceptability and burden is uncommon. A gold standard for feasibility study design in palliative care research that includes both clear criteria for success and testing of the study protocol for participant acceptability and burden is needed. Such a standard would assist with consistency in the design, conduct and reporting of feasibility and pilot studies. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  14. Basic need status and health-promoting self-care behavior in adults.

    Science.gov (United States)

    Acton, G J; Malathum, P

    2000-11-01

    Health-promoting self-care behavior emphasizing positive lifestyle practices may improve the health and quality of life of adults. One variable that may influence health-related decisions is the status of basic needs as described by Maslow. The purpose of this study was to investigate the relationships among basic need satisfaction, health-promoting self-care behavior, and selected demographic variables in a sample of community-dwelling adults. A convenience sample of 84 community-dwelling adults was recruited to complete the Basic Need Satisfaction Inventory, the Health-Promoting Lifestyle Profile II, and demographic information. Results of the study indicated that self-actualization, physical, and love/belonging need satisfaction accounted for 64% of the variance in health-promoting self-care behavior. The findings of this study are consistent with Maslow's theory of human motivation and suggest that persons who are more fulfilled and content with themselves and their lives, have physical need satisfaction, and have positive connections with others may be able to make better decisions regarding positive health-promoting self-care behaviors.

  15. Association of family-centered care with improved anticipatory guidance delivery and reduced unmet needs in child health care.

    Science.gov (United States)

    Kuo, Dennis Z; Frick, Kevin D; Minkovitz, Cynthia S

    2011-11-01

    Little is known about the association of family-centered care (FCC) with the quality of pediatric primary care. The objectives were to assess (1) associations between family-centered care (FCC), receipt of anticipatory guidance, and unmet need for health care; and (2) whether these associations vary for children with special health care needs (CSHCN). The study, a secondary data analysis of the 2004 Medical Expenditure Panel Survey, used a nationally representative sample of family members of children 0-17 years. We measured receipt of FCC in the last 12 months with a composite score average>3.5 on a 4 point Likert scale from 4 Consumer Assessment of Healthcare Providers and Systems questions. Outcome measures were six anticipatory guidance and six unmet health care service needs items. FCC was reported by 69.6% of family members. One-fifth (22.1%) were CSHCN. Thirty percent of parents reported≥4 of 6 anticipatory guidance topics discussed and 32.5% reported≥1 unmet need. FCC was positively associated with anticipatory guidance for all children (OR=1.45; 95% CI 1.19, 1.76), but no relation was found for CSHCN in stratified analyses (OR=1.01; 95% CI .75, 1.37). FCC was associated with reduced unmet needs (OR=.38; 95% CI .31, .46), with consistent findings for both non-CSHCN and CSHCN subgroups. Family-centered care is associated with greater receipt of anticipatory guidance and reduced unmet needs. The association between FCC and anticipatory guidance did not persist for CSHCN, suggesting the need for enhanced understanding of appropriate anticipatory guidance for this population.

  16. Public Housing Relocations and Relationships of Changes in Neighborhood Disadvantage and Transportation Access to Unmet Need for Medical Care.

    Science.gov (United States)

    Haley, Danielle F; Linton, Sabriya; Luo, Ruiyan; Hunter-Jones, Josalin; Adimora, Adaora A; Wingood, Gina M; Bonney, Loida; Ross, Zev; Cooper, Hannah L

    2017-01-01

    Cross-sectional research suggests that neighborhood characteristics and transportation access shape unmet need for medical care. This longitudinal analysis explores relationships of changes in neighborhood socioeconomic disadvantage and trans- portation access to unmet need for medical care. We analyzed seven waves of data from African American adults (N = 172) relocating from severely distressed public housing complexes in Atlanta, Georgia. Surveys yielded individual-level data and admin- istrative data characterized census tracts. We used hierarchical generalized linear models to explore relationships. Unmet need declined from 25% pre-relocation to 12% at Wave 7. Post-relocation reductions in neighborhood disadvantage were inversely associated with reductions in unmet need over time (OR = 0.71, 95% CI = 0.51-0.99). More frequent transportation barriers predicted unmet need (OR = 1.16, 95% CI = 1.02-1.31). These longitudinal findings support the importance of neighborhood environments and transportation access in shaping unmet need and suggest that improvements in these exposures reduce unmet need for medical care in this vulnerable population.

  17. Meeting the research infrastructure needs of micropolitan and rural communities.

    Science.gov (United States)

    Strasburger, Janette F

    2009-05-01

    In the 1800s, this country chose to establish land-grant colleges to see that the working class could attain higher education, and that the research needs of the agricultural and manufacturing segments of this country could be met. It seems contrary to our origins to see so little support at present for research infrastructure going to the very communities that need such research to sustain their populations, grow their economies, to attract physicians, to provide adequate health care, and to educate, retain, and employ their youth. Cities are viewed as sources for high-paying jobs, yet many of these same jobs could be translated to rural and micropolitan areas, provided that the resources are established to support it. One of the fastest growing economic periods in this country's history was during World War II, when even the smallest and most remote towns contributed substantially to the innovations, manufacture, and production of goods benefiting our nation as a whole. Rural areas have always lagged somewhat behind metropolitan areas in acquisition of new technology. Rural electricity and rural phone access are examples from the past. Testing our universities' abilities to grow distributive research networks beyond their campuses will create a competitive edge regionally, against global workplace, educational, and research competition, and will lay the groundwork for efficiency in research and for new innovation.

  18. A primary care-based health needs assessment in inner city Dublin.

    LENUS (Irish Health Repository)

    O'Kelly, C M

    2012-02-01

    BACKGROUND: In 2001, a primary care-based health needs assessment (HNA) in South Inner City of Dublin identified high levels of morbidity and widespread and frequent use of primary care and specialist hospital services as particular concerns. AIMS: This study aims to determine the primary care health needs of a local community, from the perspective of service users and service providers. METHODS: A similar methodology to our 2001 HNA was adopted, involving semi-structured interviews with a convenience sample of patients attending two general practices and key informants regarding local health issues and health service utilisation. RESULTS: High levels of morbidity and chronic illness were found. A correlation between the local environment and ill-health was identified, as well as high utilisation of primary care services in the area. CONCLUSION: The establishment of a Primary Care Team would begin to address the health needs of the community.

  19. Research Needs: Career and Technical Education

    Science.gov (United States)

    Kosloski, Michael F., Jr.; Ritz, John M.

    2016-01-01

    Research is an important component of each professional field. This study sought to determine topics that needed further research in the school subjects known as career and technical education. It determined topics that needed to be researched related to high school career and technical education (CTE) and the preparation for teaching CTE in…

  20. A Research Agenda for Radiation Oncology: Results of the Radiation Oncology Institute’s Comprehensive Research Needs Assessment

    International Nuclear Information System (INIS)

    Jagsi, Reshma; Bekelman, Justin E.; Brawley, Otis W.; Deasy, Joseph O.; Le, Quynh-Thu; Michalski, Jeff M.; Movsas, Benjamin; Thomas, Charles R.; Lawton, Colleen A.; Lawrence, Theodore S.; Hahn, Stephen M.

    2012-01-01

    Purpose: To promote the rational use of scarce research funding, scholars have developed methods for the systematic identification and prioritization of health research needs. The Radiation Oncology Institute commissioned an independent, comprehensive assessment of research needs for the advancement of radiation oncology care. Methods and Materials: The research needs assessment used a mixed-method, qualitative and quantitative social scientific approach, including structured interviews with diverse stakeholders, focus groups, surveys of American Society for Radiation Oncology (ASTRO) members, and a prioritization exercise using a modified Delphi technique. Results: Six co-equal priorities were identified: (1) Identify and develop communication strategies to help patients and others better understand radiation therapy; (2) Establish a set of quality indicators for major radiation oncology procedures and evaluate their use in radiation oncology delivery; (3) Identify best practices for the management of radiation toxicity and issues in cancer survivorship; (4) Conduct comparative effectiveness studies related to radiation therapy that consider clinical benefit, toxicity (including quality of life), and other outcomes; (5) Assess the value of radiation therapy; and (6) Develop a radiation oncology registry. Conclusions: To our knowledge, this prioritization exercise is the only comprehensive and methodologically rigorous assessment of research needs in the field of radiation oncology. Broad dissemination of these findings is critical to maximally leverage the impact of this work, particularly because grant funding decisions are often made by committees on which highly specialized disciplines such as radiation oncology are not well represented.

  1. Quality of Care and Job Satisfaction in the European Home Care Setting: Research Protocol

    Science.gov (United States)

    van der Roest, Henriëtte; van Hout, Hein; Declercq, Anja

    2016-01-01

    Introduction: Since the European population is ageing, a growing number of elderly will need home care. Consequently, high quality home care for the elderly remains an important challenge. Job satisfaction among care professionals is regarded as an important aspect of the quality of home care. Aim: This paper describes a research protocol to identify elements that have an impact on job satisfaction among care professionals and on quality of care for older people in the home care setting of six European countries. Methods: Data on elements at the macro-level (policy), meso-level (care organisations) and micro-level (clients) are of importance in determining job satisfaction and quality of care. Macro-level indicators will be identified in a previously published literature review. At meso- and micro-level, data will be collected by means of two questionnaires utilsed with both care organisations and care professionals, and by means of interRAI Home Care assessments of clients. The client assessments will be used to calculate quality of care indicators. Subsequently, data will be analysed by means of linear and stepwise multiple regression analyses, correlations and multilevel techniques. Conclusions and Discussion: These results can guide health care policy makers in their decision making process in order to increase the quality of home care in their organisation, in their country or in Europe. PMID:28435423

  2. Quality of Care and Job Satisfaction in the European Home Care Setting: Research Protocol

    Directory of Open Access Journals (Sweden)

    Liza Van Eenoo

    2016-08-01

    Full Text Available Introduction: Since the European population is ageing, a growing number of elderly will need home care. Consequently, high quality home care for the elderly remains an important challenge. Job satisfaction among care professionals is regarded as an important aspect of the quality of home care. Aim: This paper describes a research protocol to identify elements that have an impact on job satisfaction among care professionals and on quality of care for older people in the home care setting of six European countries. Methods: Data on elements at the macro-level (policy, meso-level (care organisations and micro-level (clients are of importance in determining job satisfaction and quality of care. Macro-level indicators will be identified in a previously published literature review. At meso- and micro-level, data will be collected by means of two questionnaires utilsed with both care organisations and care professionals, and by means of interRAI Home Care assessments of clients. The client assessments will be used to calculate quality of care indicators. Subsequently, data will be analysed by means of linear and stepwise multiple regression analyses, correlations and multilevel techniques. Conclusions and Discussion: These results can guide health care policy makers in their decision making process in order to increase the quality of home care in their organisation, in their country or in Europe.

  3. Regulating the health care workforce: next steps for research.

    Science.gov (United States)

    Davies, Celia

    2004-01-01

    This article explores the recent ferment surrounding professional self-regulation in medicine and other health professions. It reviews the academic literature and sets out an agenda for research. The first section considers definitions, acknowledging the particularly complex regulatory maze in UK health care at present, in which professional self-regulation is only one part. The second section reviews academic writing, currently dispersed among the disciplines. 'The logic of light touch regulation', a feature of the 19th century establishment of the General Medical Council, can perhaps shed light on present debates. Alongside the intense political spotlight on regulation in the wake of the Bristol case, consumer-led research and consumer pressure to rethink the principles of regulation has emerged. This is examined in the third section. Finally, themes for research are advanced. First, there is a need to explore the changing relationship between the state and professions and implications, not only for the professions but for health care more broadly. Second, calls for a new professionalism need to be given clearer content. Third, the moves towards more lay involvement in regulatory bodies need study. Fourth, questions of human rights and professional registers must be explored. Fundamental questions of what professional self-regulation can hope to achieve and where it fits in relation to government ambitions as a whole, remain unresolved. Alongside the work programme of the new overarching regulator, there may well be scope for a new style of public enquiry covering the whole territory of regulation.

  4. Need for mental health care in adolescents and its determinants : The TRAILS Study

    NARCIS (Netherlands)

    Jansen, Danielle E. M. C.; Wiegersma, P.; Ormel, Johan; Verhulst, Frank C.; Vollebergh, Wilma A. M.; Reijneveld, Sijmen A.

    Background: Although a great deal of evidence is available on the patterns and determinants of unmet health care needs among adolescents with mental health problems, little is known about the factors that influence the need for care. The aim of this study is to assess the occurrence of need for care

  5. A research model of health-care competition and customer satisfaction.

    Science.gov (United States)

    Asoh, Derek A; Rivers, Patrick A

    2007-11-01

    In all industries, competition among businesses has long been encouraged as a mechanism to increase value for customers. In other words, competition ensures the provision of better products and services to satisfy the needs of customers. Various perspectives of competition, the nature of service quality, health-care system costs and customer satisfaction in health care are examined. A model of the relationship among these variables is developed. The model depicts customer satisfaction as an outcome measure directly dependent on competition. Quality of care and health-care system costs, while also directly dependent on competition, are considered as determinants of customer satisfaction as well. The model is discussed in the light of propositions for empirical research.

  6. Needs of Parents in Caring for Their Children in a Pediatric Intensive Care Unit.

    Science.gov (United States)

    Valderrama Sanabria, Mery Luz; Muñoz de Rodríguez, Lucy

    2016-04-01

    This work sought to describe the needs of parents to participate in caring for their children hospitalized in a pediatric intensive care unit (PICU). This is a qualitative study based on the ethno-nursing research method proposed by Leininger. For data collection and analysis, in-depth open interviews were used, along with field notes and enabler guidelines proposed by Leininger: stranger-friend, observation, participation, reflexion, and the Sunrise model. Parents of children hospitalized in a PICU in the city of Tunja (Boyacá, Colombia) participated between February 2012 and October 2013. The needs of parents to care for their children were described in the following themes: clear and timely communication, familiarization with technology, the value of the family, favoring the parent-children interaction during visits, and valuing and respecting generic (folk) knowledge. The study provides knowledge, from the cultural perspective of parents with children hospitalized in PICU, as input to plan and develop care actions with them, according to their own needs.Objetivo.Describir las necesidades de padres para participar del cuidado de sus hijos hospitalizados en la Unidad de Cuidado Intensivo Pediátrico (UCIP). Métodos. Investigación cualitativa basada en el método de la etnoenfermería propuesto por Leininger. Para la recolección y análisis de la información se utilizaron la entrevista abierta a profundidad, las notas de campo y guías facilitadoras propuestas por Leininger: Extraño amigo, Observación, Participación Reflexión y el modelo del sol naciente. Participaron los padres de niños hospitalizados en una UCIP de Tunja (Boyacá, Colombia) entre febrero de 2012 y Octubre de 2013. Resultados. Se describen las necesidades de los padres para cuidar a sus hijos en los siguientes temas: Comunicación clara y oportuna, Familiarización con la Tecnología, El valor de la familia, Favorecer la interacción de padres-hijos durante la visita y Valorar y

  7. Educational Needs Assessment of Family Health Providers in Tabriz Health Care Centers in 2015

    Directory of Open Access Journals (Sweden)

    Faranak Ghoreyshyzadeh

    2017-06-01

    Full Text Available Background: This study intends to determine the educational needs of family health staff employed in health care centers in Tabriz, the provincial capital of east Azerbaijan, Iran in 2015. Methods: In this cross-sectional study 282 staff were enrolled, together with 22 managers, through census. The data collection tool was a researcher-designed questionnaire whose content validity were confirmed by 5 experts of health care and medical education centers. They self--evaluated their knowledge, skills and attitudes in 6 task processes including "integrated care for pregnant women", "women’s general and reproductive health", "child health care and breastfeeding", "vaccination skills", "teenagers’ and young adults’ health", and "common diseases prevention and control". Cronbach alpha coefficients were over 0.85. Data analysis was done using SPSS version 16 and descriptive statistics (mean and standard deviation and one-sample t tests were calculated to compare the mean of scores with midpoint criteria (=3. Results: Generally family health staff self-evaluated their knowledge, skills and attitudes in all task processes in higher than midpoint criteria level, which was consistent with the opinions of the managers, however, educational needs required by personnel in some processes or sub- process including "common diseases prevention and control" ( knowledge on referring thalassemia couples for genetic testing, mental health counseling, "vaccination skills" ( intradermal vaccination skills, "teenagers’ and young adults’ health" (Self-care training and parents education, "women’s general and reproductive health" (principles of family planning counseling and less needs stated in "integrated care for pregnant mothers" (except for diagnosis and management of ectopic pregnancy, placenta previa and abruption and "child health care" as compared to criteria (All P value <0.05. In contrast to self-assessment results, in interorganization evaluations

  8. Comprehensive care and pregnancy: The unmet care needs of pregnant women with a history of rape

    Science.gov (United States)

    Munro, Michelle L.; Rietz, Melissa Foster

    2013-01-01

    This paper proposes a framework for assessing the unmet needs of rape survivors during pregnancy based on the Sexual Assault Nurse Examiner (SANE) practice level theory and an empirical exploration of rape survivors’ health status in pregnancy via a secondary analysis. Our findings indicate that there may be unmet needs in pregnancy related to all five post-assault comprehensive care components: (1) physical care, (2) pregnancy prevention, (3) sexually transmitted infection screening, (4) psychological care, and (5) legal care. Rape history and its current impact on the survivor predicted somatic disorders, substance use, unwanted pregnancy, infections, posttraumatic stress disorder, and recent abuse. PMID:23215990

  9. Development of the parental needs scale for rare diseases: a tool for measuring the supportive care needs of parents caring for a child with a rare disease.

    Science.gov (United States)

    Pelentsov, Lemuel J; Fielder, Andrea L; Laws, Thomas A; Esterman, Adrian J

    2016-01-01

    Children and families affected by rare diseases have received scant consideration from the medical, scientific, and political communities, with parents' needs especially having received little attention. Affected parents often have limited access to information and support and appropriate health care services. While scales to measure the needs of parents of children with chronic illnesses have been developed, there have been no previous attempts to develop a scale to assess the needs of parents of children with rare diseases. To develop a scale for measuring the supportive care needs of parents of children with rare diseases. A total of 301 responses to our Parental Needs Survey were randomly divided into two halves, one for exploratory factor analysis and the other for confirmatory factor analysis (CFA). After removing unsuitable items, exploratory factor analysis was undertaken to determine the factor structure of the data. CFA using structural equation modeling was then undertaken to confirm the factor structure. Seventy-two items were entered into the CFA, with a scree plot showing a likely four-factor solution. The results provided four independent subscales of parental needs: Understanding the disease (four items); Working with health professionals (four items); Emotional issues (three items); and Financial needs (three items). The structural equation modeling confirmed the suitability of the four-factor solution and demonstrated that the four subscales could be added to provide an overall scale of parental need. This is the first scale developed to measure the supportive care needs of parents of children with rare diseases. The scale is suitable for use in surveys to develop policy, in individual clinical assessments, and, potentially, for evaluating new programs. Measuring the supportive care needs of parents caring for a child with a rare disease will hopefully lead to better physical and psychological health outcomes for parents and their affected

  10. [A research roadmap for complementary and alternative medicine - what we need to know by 2020].

    Science.gov (United States)

    Fischer, Felix; Lewith, George; Witt, Claudia M; Linde, Klaus; von Ammon, Klaus; Cardini, Francesco; Falkenberg, Torkel; Fønnebø, Vinjar; Johannessen, Helle; Reiter, Bettina; Uehleke, Bernhard; Weidenhammer, Wolfgang; Brinkhaus, Benno

    2014-01-01

    The CAMbrella coordination action was funded within the Framework Programme 7. Its aim is to provide a research roadmap for clinical and epidemiological research for complementary and alternative medicine (CAM) that is appropriate for the health needs of European citizens and acceptable to their national research institutes and healthcare providers in both public and private sectors. One major issue in the European research agenda is the demographic change and its impact on health care. Our vision for 2020 is that there is an evidence base that enables European citizens to make informed decisions about CAM, both positive and negative. This roadmap proposes a strategic research agenda for the field of CAM designed to address future European health care challenges. This roadmap is based on the results of CAMbrella’s several work packages, literature reviews and expert discussions including a consensus meeting. We first conducted a systematic literature review on key issues in clinical and epidemiological research in CAM to identify the general concepts, methods and the strengths and weaknesses of current CAM research. These findings were discussed in a workshop (Castellaro, Italy, September 7–9th 2011) with international CAM experts and strategic and methodological recommendations were defined in order to improve the rigor and relevance of CAM research. These recommendations provide the basis for the research roadmap, which was subsequently discussed in a consensus conference (Järna, Sweden, May 9–11th 2012) with all CAMbrella members and the CAMbrella advisory board. The roadmap was revised after this discussion in CAMbrella Work Package (WP) 7 and finally approved by CAMbrella’s scientific steering committee on September 26th 2012. Our main findings show that CAM is very heterogenous in terms of definitions and legal regulations between the European countries. In addition, citizens’ needs and attitudes towards CAM as well as the use and provision of CAM

  11. Paediatric obesity research in early childhood and the primary care setting: the TARGet Kids! research network.

    Science.gov (United States)

    Morinis, Julia; Maguire, Jonathon; Khovratovich, Marina; McCrindle, Brian W; Parkin, Patricia C; Birken, Catherine S

    2012-04-01

    Primary paediatric health care is the foundation for preventative child health. In light of the recent obesity epidemic, paediatricians find themselves at the frontline of identification and management of childhood obesity. However, it is well recognized that evidence based approaches to obesity prevention and subsequent translation of this evidence into practice are critically needed. This paper explores the role of primary care in obesity prevention and introduces a novel application and development of a primary care research network in Canada--TARGet Kids!--to develop and translate an evidence-base on effective screening and prevention of childhood obesity.

  12. Paediatric Obesity Research in Early Childhood and the Primary Care Setting: The TARGet Kids! Research Network

    Directory of Open Access Journals (Sweden)

    Catherine S. Birken

    2012-04-01

    Full Text Available Primary paediatric health care is the foundation for preventative child health. In light of the recent obesity epidemic, paediatricians find themselves at the frontline of identification and management of childhood obesity. However, it is well recognized that evidence based approaches to obesity prevention and subsequent translation of this evidence into practice are critically needed. This paper explores the role of primary care in obesity prevention and introduces a novel application and development of a primary care research network in Canada—TARGet Kids!—to develop and translate an evidence-base on effective screening and prevention of childhood obesity.

  13. Socio-Economic Determinants of the Need for Dental Care in Adults.

    Science.gov (United States)

    Trohel, Gilda; Bertaud-Gounot, Valérie; Soler, Marion; Chauvin, Pierre; Grimaud, Olivier

    2016-01-01

    Oral health has improved in France. However, there are still inequalities related to the socio-economic status. The aim of this study was to measure the prevalence of dental care needs in an adult population and to identify the demographic, socio-economic and behavioral variables that may explain variations in this parameter. A cross-sectional analysis of the French SIRS cohort (n = 2,997 adults from the Paris region; 2010 data) was carried out to determine the prevalence of self-reported dental care needs relative to demographic, socio-economic and behavioral variables. A logistic regression model was used to identify the variables that were most strongly associated with the level of need. In 2010, the prevalence of the need for dental care in the SIRS cohort was 35.0% (95% CI [32.3-37.8]). It was lower in people with higher education levels (31.3% [27.9-34.6]), without immigrant background (31.3% [28.0-34.6]) and with comprehensive health insurance (social security + complementary health cover; 32.8% [30.2-35.4]). It decreased as the socio-economic status increased, but without following a strict linear change. It was also lower among individuals who had a dental check-up visit in the previous two years. In multivariate analyses, the socioeconomic variables most strongly associated with the need for dental care were: educational attainment (OR = 1.21 [1.02-1.44]), income level (OR = 1.66 [1.92-2.12]) and national origin (OR = 1.53 [1.26-1.86]). These results confirm that the prevalence of dental care needs is higher among adults with low socio-economic status. Education level, income level and also national origin were more strongly associated with the need for dental care than insurance cover level.

  14. The Growing Need for Validated Biomarkers and Endpoints for Dry Eye Clinical Research.

    Science.gov (United States)

    Roy, Neeta S; Wei, Yi; Kuklinski, Eric; Asbell, Penny A

    2017-05-01

    Biomarkers with minimally invasive and reproducible objective metrics provide the key to future paradigm shifts in understanding of the underlying causes of dry eye disease (DED) and approaches to treatment of DED. We review biomarkers and their validity in providing objective metrics for DED clinical research and patient care. The English-language literature in PubMed primarily over the last decade was surveyed for studies related to identification of biomarkers of DED: (1) inflammation, (2) point-of-care, (3) ocular imaging, and (4) genetics. Relevant studies in each group were individually evaluated for (1) methodological and analytical details, (2) data and concordance with other similar studies, and (3) potential to serve as validated biomarkers with objective metrics. Significant work has been done to identify biomarkers for DED clinical trials and for patient care. Interstudy variation among studies dealing with the same biomarker type was high. This could be attributed to biologic variations and/or differences in processing, and data analysis. Correlation with other signs and symptoms of DED was not always clear or present. Many of the biomarkers reviewed show the potential to serve as validated and objective metrics for clinical research and patient care in DED. Interstudy variation for a given biomarker emphasizes the need for detailed reporting of study methodology, including information on subject characteristics, quality control, processing, and analysis methods to optimize development of nonsubjective metrics. Biomarker development offers a rich opportunity to significantly move forward clinical research and patient care in DED. DED is an unmet medical need - a chronic pain syndrome associated with variable vision that affects quality of life, is common with advancing age, interferes with the comfortable use of contact lenses, and can diminish results of eye surgeries, such as cataract extraction, LASIK, and glaucoma procedures. It is a worldwide

  15. Improving cardiovascular outcomes among Aboriginal Australians: Lessons from research for primary care

    Directory of Open Access Journals (Sweden)

    Sandra C Thompson

    2016-11-01

    Full Text Available Background: The Aboriginal people of Australia have much poorer health and social indicators and a substantial life expectancy gap compared to other Australians, with premature cardiovascular disease a major contributor to poorer health. This article draws on research undertaken to examine cardiovascular disparities and focuses on ways in which primary care practitioners can contribute to reducing cardiovascular disparities and improving Aboriginal health. Methods: The overall research utilised mixed methods and included data analysis, interviews and group processes which included Aboriginal people, service providers and policymakers. Workshop discussions to identify barriers and what works were recorded by notes and on whiteboards, then distilled and circulated to participants and other stakeholders to refine and validate information. Additional engagement occurred through circulation of draft material and further discussions. This report distils the lessons for primary care practitioners to improve outcomes through management that is attentive to the needs of Aboriginal people. Results: Aspects of primordial, primary and secondary prevention are identified, with practical strategies for intervention summarised. The premature onset and high incidence of Aboriginal cardiovascular disease make prevention imperative and require that primary care practitioners understand and work to address the social underpinnings of poor health. Doctors are well placed to reinforce the importance of healthy lifestyle at all visits to involve the family and to reduce barriers which impede early care seeking. Ensuring better information for Aboriginal patients and better integrated care for patients who frequently have complex needs and multi-morbidities will also improve care outcomes. Conclusion: Primary care practitioners have an important role in improving Aboriginal cardiovascular care outcomes. It is essential that they recognise the special needs of their

  16. Improving cardiovascular outcomes among Aboriginal Australians: Lessons from research for primary care.

    Science.gov (United States)

    Thompson, Sandra C; Haynes, Emma; Woods, John A; Bessarab, Dawn C; Dimer, Lynette A; Wood, Marianne M; Sanfilippo, Frank M; Hamilton, Sandra J; Katzenellenbogen, Judith M

    2016-01-01

    The Aboriginal people of Australia have much poorer health and social indicators and a substantial life expectancy gap compared to other Australians, with premature cardiovascular disease a major contributor to poorer health. This article draws on research undertaken to examine cardiovascular disparities and focuses on ways in which primary care practitioners can contribute to reducing cardiovascular disparities and improving Aboriginal health. The overall research utilised mixed methods and included data analysis, interviews and group processes which included Aboriginal people, service providers and policymakers. Workshop discussions to identify barriers and what works were recorded by notes and on whiteboards, then distilled and circulated to participants and other stakeholders to refine and validate information. Additional engagement occurred through circulation of draft material and further discussions. This report distils the lessons for primary care practitioners to improve outcomes through management that is attentive to the needs of Aboriginal people. Aspects of primordial, primary and secondary prevention are identified, with practical strategies for intervention summarised. The premature onset and high incidence of Aboriginal cardiovascular disease make prevention imperative and require that primary care practitioners understand and work to address the social underpinnings of poor health. Doctors are well placed to reinforce the importance of healthy lifestyle at all visits to involve the family and to reduce barriers which impede early care seeking. Ensuring better information for Aboriginal patients and better integrated care for patients who frequently have complex needs and multi-morbidities will also improve care outcomes. Primary care practitioners have an important role in improving Aboriginal cardiovascular care outcomes. It is essential that they recognise the special needs of their Aboriginal patients and work at multiple levels both outside and

  17. How do GPs recognize needs for palliative care in their patients?

    NARCIS (Netherlands)

    Claessen, S.J.; Francke, A.L.; Deliens, L.

    2012-01-01

    Aim: The aim of this study was to explore how GPs in the Netherlands recognize patients’ needs for palliative care. Methods: We conducted qualitative semi-structured interviews with about 25 GPs. These GPs were interviewed about recognition of the needs for palliative care in their patients and how

  18. Self-perceived symptoms and care needs of patients with severe to very severe chronic obstructive pulmonary disease, congestive heart failure or chronic renal failure and its consequences for their closest relatives: the research protocol

    Directory of Open Access Journals (Sweden)

    Schols Jos MGA

    2008-05-01

    Full Text Available Abstract Background Recent research shows that the prevalence of patients with very severe chronic obstructive pulmonary disease (COPD, congestive heart failure (CHF and chronic renal failure (CRF continues to rise over the next years. Scientific studies concerning self-perceived symptoms and care needs in patients with severe to very severe COPD, CHF and CRF are scarce. Consequently, it will be difficult to develop an optimal patient-centred palliative care program for patients with end-stage COPD, CHF or CRF. The present study has been designed to assess the symptoms, care needs, end-of-life care treatment preferences and communication needs of patients with severe to very severe COPD, CHF or CRF. Additionally, family distress and care giving burden of relatives of these patients will be assessed. Methods/design A cross-sectional comparative and prospective longitudinal study in patients with end-stage COPD, CHF or CRF has been designed. Patients will be recruited by their treating physician specialist. Patients and their closest relatives will be visited at baseline and every 4 months after baseline for a period of 12 months. The following outcomes will be assessed during home visits: self-perceived symptoms and care needs; daily physical functioning; general health status; end-of-life care treatment preferences; end-of-life care communication and care-giver burden of family caregivers. Additionally, end-of-life care communication and prognosis of survival will be assessed with the physician primarily responsible for the management of the chronic organ failure. Finally, if patients decease during the study period, the baseline preferences with regard to life-sustaining treatments will be compared with the real end-of-life care. Discussion To date, the symptoms, care needs, caregiver burden, end-of-life care treatment preferences and communication needs of patients with very severe COPD, CHF or CRF remain unknown. The present study will

  19. Building Imaging Institutes of Patient Care Outcomes: Imaging as a Nidus for Innovation in Clinical Care, Research, and Education.

    Science.gov (United States)

    Petrou, Myria; Cronin, Paul; Altaee, Duaa K; Kelly, Aine M; Foerster, Bradley R

    2018-05-01

    Traditionally, radiologists have been responsible for the protocol of imaging studies, imaging acquisition, supervision of imaging technologists, and interpretation and reporting of imaging findings. In this article, we outline how radiology needs to change and adapt to a role of providing value-based, integrated health-care delivery. We believe that the way to best serve our specialty and our patients is to undertake a fundamental paradigm shift in how we practice. We describe the need for imaging institutes centered on disease entities (eg, lung cancer, multiple sclerosis) to not only optimize clinical care and patient outcomes, but also spur the development of a new educational focus, which will increase opportunities for medical trainees and other health professionals. These institutes will also serve as unique environments for testing and implementing new technologies and for generating new ideas for research and health-care delivery. We propose that the imaging institutes focus on how imaging practices-including new innovations-improve patient care outcomes within a specific disease framework. These institutes will allow our specialty to lead patient care, provide the necessary infrastructure for state-of-the art-education of trainees, and stimulate innovative and clinically relevant research. Copyright © 2018 The Association of University Radiologists. All rights reserved.

  20. Genetic educational needs and the role of genetics in primary care: a focus group study with multiple perspectives

    Directory of Open Access Journals (Sweden)

    van der Vleuten Cees

    2011-02-01

    Full Text Available Abstract Background Available evidence suggests that improvements in genetics education are needed to prepare primary care providers for the impact of ongoing rapid advances in genomics. Postgraduate (physician training and master (midwifery training programmes in primary care and public health are failing to meet these perceived educational needs. The aim of this study was to explore the role of genetics in primary care (i.e. family medicine and midwifery care and the need for education in this area as perceived by primary care providers, patient advocacy groups and clinical genetics professionals. Methods Forty-four participants took part in three types of focus groups: mono-disciplinary groups of general practitioners and midwives, respectively and multidisciplinary groups composed of a diverse set of experts. The focus group sessions were audio-taped, transcribed verbatim and analysed using content analysis. Recurrent themes were identified. Results Four themes emerged regarding the educational needs and the role of genetics in primary care: (1 genetics knowledge, (2 family history, (3 ethical dilemmas and psychosocial effects in relation to genetics and (4 insight into the organisation and role of clinical genetics services. These themes reflect a shift in the role of genetics in primary care with implications for education. Although all focus group participants acknowledged the importance of genetics education, general practitioners felt this need more urgently than midwives and more strongly emphasized their perceived knowledge deficiencies. Conclusion The responsibilities of primary care providers with regard to genetics require further study. The results of this study will help to develop effective genetics education strategies to improve primary care providers' competencies in this area. More research into the educational priorities in genetics is needed to design courses that are suitable for postgraduate and master programmes for

  1. Supportive care needs of rural individuals living with cancer: A literature review.

    Science.gov (United States)

    Loughery, Joanne; Woodgate, Roberta L

    2015-01-01

    Regardless of geographic location, the cancer journey is an extremely difficult experience for both patients and their families. The aim of this literature review is to explore the impact of rural or remote residence on the supportive care needs of individuals living with cancer. This review included ten qualitative, seven quantitative, and six mixed design studies. Data collection, analysis, and evaluation were guided using a multi-domain supportive care framework based on seven domains: physical, emotional, informational, psychological, spiritual, social, and practical (Fitch, 2009). This review will suggest that there are distinct experiences that present both challenges and benefits to individuals living with cancer in rural areas. These findings will be detailed with recommendations, and grounding for future research outlined.

  2. Participative mental health consumer research for improving physical health care: An integrative review.

    Science.gov (United States)

    Happell, Brenda; Ewart, Stephanie B; Platania-Phung, Chris; Stanton, Robert

    2016-10-01

    People with mental illness have a significantly lower life expectancy and higher rates of chronic physical illnesses than the general population. Health care system reform to improve access and quality is greatly needed to address this inequity. The inclusion of consumers of mental health services as co-investigators in research is likely to enhance service reform. In light of this, the current paper reviews mental health consumer focussed research conducted to date, addressing the neglect of physical health in mental health care and initiatives with the aim of improving physical health care. The international literature on physical healthcare in the context of mental health services was searched for articles, including mental health consumers in research roles, via Medline, CINAHL and Google Scholar, in October 2015. Four studies where mental health consumers participated as researchers were identified. Three studies involved qualitative research on barriers and facilitators to physical health care access, and a fourth study on developing technologies for more effective communication between GPs and patients. This review found that participatory mental health consumer research in physical health care reform has only become visible in the academic literature in 2015. Heightened consideration of mental health consumer participation in research is required by health care providers and researchers. Mental health nurses can provide leadership in increasing mental health consumer research on integrated care directed towards reducing the health gap between people with and without mental illness. © 2016 Australian College of Mental Health Nurses Inc.

  3. The Supportive Care Needs of Parents With a Child With a Rare Disease: A Qualitative Descriptive Study.

    Science.gov (United States)

    Pelentsov, Lemuel J; Fielder, Andrea L; Esterman, Adrian J

    2016-01-01

    There are few studies that exist which focus specifically on parents with a child with a rare disease. The purpose of this study was to better understand the lived experiences and supportive care needs (SCN) of parents caring for a child across a spectrum of rare diseases. A qualitative descriptive approach was used to guide the research, and four semi-structured focus group interviews were conducted with 23 parents (17 mothers and 6 fathers). Participants described 'feeling boxed-in outside the box' due to a number of limitations unique to their child's disease, daily practical challenges in providing care and the various relational impacts of caring for a child with a rare disease were discussed. The results from this study help to give clearer direction for health professionals on where to focus future efforts in better meeting the supportive care needs of parents and their child with a rare disease. Copyright © 2015 Elsevier Inc. All rights reserved.

  4. Principle of Care and Giving to Help People in Need.

    Science.gov (United States)

    Bekkers, René; Ottoni-Wilhelm, Mark

    2016-01-01

    Theories of moral development posit that an internalized moral value that one should help those in need-the principle of care-evokes helping behaviour in situations where empathic concern does not. Examples of such situations are helping behaviours that involve cognitive deliberation and planning, that benefit others who are known only in the abstract, and who are out-group members. Charitable giving to help people in need is an important helping behaviour that has these characteristics. Therefore we hypothesized that the principle of care would be positively associated with charitable giving to help people in need, and that the principle of care would mediate the empathic concern-giving relationship. The two hypotheses were tested across four studies. The studies used four different samples, including three nationally representative samples from the American and Dutch populations, and included both self-reports of giving (Studies 1-3), giving observed in a survey experiment (Study 3), and giving observed in a laboratory experiment (Study 4). The evidence from these studies indicated that a moral principle to care for others was associated with charitable giving to help people in need and mediated the empathic concern-giving relationship. © 2016 The Authors. European Journal of Personality published by John Wiley & Sons Ltd on behalf of European Association of Personality Psychology.

  5. e-research: Changes and challenges in the use of digital tools in primary care research

    DEFF Research Database (Denmark)

    Bruun Larsen, Lars; Skonnord, Trygve; Gjelstad, Svein

    in primary care research. Examples of this are online randomisation, electronic questionnaires, automatic email scheduling, mobile phone applications and data extraction tools. The amount of data can be increased to a low cost, and this can help to reach adequate sample sizes. However, there are still...... challenges within the field. To secure a high response rate, you need to follow up manually or use another application. There are also practical and ethical problems, and the data security for sensitive data have to be followed carefully. Session content Oral presentations about some technological...

  6. Evaluation of Managerial Needs for Palliative Care Centers: Perspectives of Medical Directors.

    Science.gov (United States)

    Kafadar, Didem; Ince, Nurhan; Akcakaya, Adem; Gumus, Mahmut

    2015-01-01

    Palliative therapies have an important role in increasing the quality of healthcare and in dealing with physical and psychosocial problems due to cancer. We here aimed to evaluate the managerial perspectives and opinions of the hospital managers and clinical directors about specialized palliative care centers. This study was conducted in two large-scale hospitals in which oncology care is given with medical directors (n:70). A questionnaire developed by the researchers asking about demographic characteristics and professional experience, opinions and suggestions of medical directors about providing and integrating palliative care into healthcare was used and responses were analyzed. Potential barriers in providing palliative care (PC) and integrating PC into health systems were perceived as institutional by most of the doctors (97%) and nurses (96%). Social barriers were reported by 54% of doctors and 82% of nurses. Barriers due to interest and knowledge of health professionals about PC were reported by 76% of doctors and 75% of nurses. Among encouragement ideas to provide PC were dealing with staff educational needs (72%), improved working conditions (77%) and establishing a special PC unit (49)%. An independent PC unit was suggested by 27.7% of participants and there was no difference between the hospitals. To overcome the barriers for integration of PC into health systems, providing education for health professionals and patient relatives, raising awareness in society, financial arrangements and providing infrastructure were suggested. The necessity for planning and programming were emphasized. In our study, the opinions and perspectives of hospital managers and clinical directors were similar to current approaches. Managerial needs for treating cancer in efficient cancer centers, increasing the capacity of health professionals to provide care in every stage of cancer, effective education planning and patient care management were emphasized.

  7. Community care for the Elderly: Needs and Service Use Study (CENSUS): Who receives home care packages and what are the outcomes?

    Science.gov (United States)

    Low, Lee-Fay; Fletcher, Jennifer; Gresham, Meredith; Brodaty, Henry

    2015-09-01

    Investigate factors associated with waiting times for home care packages and outcomes for care recipients and carers. Analyses of data collected every four months for 12 months from 55 community-dwelling older adults eligible for government-subsidised packaged care and their carers. Thirty of fifty-five participants were offered a package; they waited from one to 237 days. Baseline quality of life was higher for those offered a package than those not. Baseline care needs and unmet needs, neuropsychiatric symptoms, and cognitive decline did not predict offers. Package receipt compared to non-package receipt was associated with decreased carer burden over time but did not affect levels of unmet care needs, care needs or quality of life. Being offered a home care package was not based on waiting time or unmet care needs. Reforms should include a transparent system of wait listing and prioritisation. © 2014 ACOTA.

  8. Impact of caregivers' unmet needs for supportive care on quality of terminal cancer care delivered and caregiver's workforce performance.

    Science.gov (United States)

    Park, Sang Min; Kim, Young Jin; Kim, Samyong; Choi, Jong Soo; Lim, Ho-Yeong; Choi, Youn Seon; Hong, Young Seon; Kim, Si-Young; Heo, Dae Seog; Kang, Ki Moon; Jeong, Hyun Sik; Lee, Chang Geol; Moon, Do Ho; Choi, Jin-Young; Kong, In Sik; Yun, Young Ho

    2010-06-01

    Family caregivers play an important role in caring for cancer patients, but the impact of caregivers' unmet needs on the quality of end-of-life (EOL) care they deliver and on their workplace performance are less understood. We identified 1,662 family caregivers of cancer patients who had died at any of 17 hospitals in Korea during 2004. The caregivers answered a telephone questionnaire about needs that were not met when they delivered terminal cancer care and how those unmet their needs affected their workplace performance; they also answered the Quality Care Questionnaire-End of Life (QCQ-EOL). Compared with caregivers who did not have unmet needs, caregivers who had unmet needs for symptom management, financial support, or community support showed poorer QCQ-EOL scores (P < 0.01). Caregivers who had unmet needs for financial support (adjusted odds ratio (aOR) = 7.55; 95% confidential interval (CI) 3.80-15.00), psychosocial support (aOR = 6.24; 95% CI 2.95-13.05), symptom management (aOR = 3.21; 95% CI 2.26-4.54), community support (aOR = 3.82; 95% CI 2.38-6.11), or religious support (aOR = 4.55; 95% CI 1.84-11.26) were more likely to experience work limitations. Caregivers of patients receiving conventional hospital care were more likely to have unmet needs for symptom management (aOR = 1.21; 95% CI 1.00-1.47), psychosocial support (aOR = 1.99; 95% CI 1.37-2.88), and religious support (aOR = 1.73; 95% CI 1.08-2.78) than those of patients receiving palliative hospice care. Caregivers' unmet needs negatively affected both the quality of EOL care they delivered and their workplace performance. More investment in caregiver support and public policies that meet caregiver needs are needed, and hospice use should be encouraged.

  9. Psychosocial Care Needs of Melanoma Survivors: Are They Being Met?

    Directory of Open Access Journals (Sweden)

    Sabine Fischbeck

    Full Text Available Patients who have survived malignant melanoma for more than five years may lack the opportunity to talk about their burden. As a consequence their psychosocial care needs remain undetected and available supportive interventions may not be utilised. Therefore, the psychosocial burden of this patient group needs to be assessed using specific screening instruments. The aim of this study was to investigate the psychosocial burden of long-term melanoma survivors, their psychosocial care needs and the determinants of these needs. We wanted to find out if the use of professional support corresponds to the care needs defined by experts. Using the cancer registry of Rhineland-Palatinate, melanoma patients diagnosed at least 5 years before the survey were contacted by physicians. N = 689 former patients completed the Hornheide Questionnaire (short form HQ-S to identify psychosocial support need (scale cut off ≥ 16 or item-based cut-off score and the potential psychosocial determinants of these needs. Additionally, they were asked about their utilisation of the professional support system. More than one third (36% of them was in need for professional psychosocial support. The highest burden scores concerned worry about tumour progression. Younger age (< 50, higher general fatigue, higher symptom burden, lower general health, negative social interactions and unfulfilled information needs were significant predictors of the need for psychosocial intervention. Related to the percentage of survivors identified as 'in need', the professional support system was underused. Further studies should investigate whether using the HQ-S to routinely identify burdened melanoma patients could lead to better fulfilment of their intervention needs, ultimately enhancing health-related quality of life.

  10. Which need characteristics influence healthcare service utilization in home care arrangements in Germany?

    Science.gov (United States)

    Dorin, Lena; Turner, Suzi C; Beckmann, Lea; große Schlarmann, Jörg; Faatz, Andreas; Metzing, Sabine; Büscher, Andreas

    2014-05-22

    We see a growing number of older adults receiving long-term care in industrialized countries. The Healthcare Utilization Model by Andersen suggests that individual need characteristics influence utilization. The purpose of this study is to analyze correlations between need characteristics and service utilization in home care arrangements. 1,152 respondents answered the questionnaire regarding their integration of services in their current and future care arrangements. Care recipients with high long-term care needs answered the questionnaire on their own, the family caregiver assisted the care recipient in answering the questions, or the family caregiver responded to the questionnaire on behalf of the care recipient. They were asked to rank specific needs according to their situation. We used descriptive statistics and regression analysis. Respondents are widely informed about services. Nursing services and counseling are the most used services. Short-term care and guidance and training have a high potential for future use. Day care, self-help groups, and mobile services were the most frequently rejected services in our survey. Women use more services than men and with rising age utilization increases. Long waiting times and bad health of the primary caregiver increases the chance of integrating services into the home care arrangements. The primary family caregiver has a high impact on service utilization. This indicates that the whole family should be approached when offering services. Professionals should react upon the specific needs of care dependents and their families.

  11. The nurse entrepreneur: empowerment needs, challenges, and self-care practices

    Directory of Open Access Journals (Sweden)

    Vannucci MJ

    2017-09-01

    Full Text Available Marla J Vannucci,1 Sharon M Weinstein2 1Psychology Department, Adler University, Chicago, IL, 2SMW Group, North Bethesda, MD, USA Abstract: The purpose of this exploratory study was to better understand the experiences and challenges of nurse entrepreneurs. Nurse entrepreneurs (N=44 reported on their transitions from employment to entrepreneurship, key motivators in the decision to start a business, and the challenges they face as entrepreneurs in the health care field. Additionally, participants completed the 33-item Mindful Self-Care Scale – Short, which measured their self-care activities and behaviors in six domains: Physical Care, Supportive Relationships, Mindful Awareness, Self-compassion/Purpose, Mindful Relaxation, and Supportive Structure. Nurse entrepreneurs reported higher rates of self-care practices than a norm community sample, and age was positively correlated with higher rates of self-care practices. Nurse entrepreneurs reported that factors related to psychological empowerment, such as meaning/purpose, having an impact, need for growth, and getting to make decisions, were more critical motivators in the decision to start a business than factors associated with structural empowerment, such as financial gain and job or organizational constraints. Some work/life balance challenges, such as juggling multiple roles in a business, balancing one’s own needs with those of others, time management, and addressing both family and business needs, were associated with fewer self-care behaviors. The biggest challenges to success that were identified, such as implementing a marketing strategy, networking, and accessing mentorship, were all related to relying on connections with others. The results of this study will benefit nurse entrepreneurs, potential nurse entrepreneurs, and others in the health care delivery system. Keywords: career development, entrepreneurship, mindfullness, work/life balance, health care

  12. Targeting consumer needs through marketing research.

    Science.gov (United States)

    Inguanzo, J M

    1986-11-01

    The importance of marketing research in health care has increased dramatically in recent years as hospitals grapple to maintain a place in today's uncertain market. This article examines how marketing research can enhance the effectiveness of your hospital's internal and external communications by identifying programs and services considered most important by consumers.

  13. Participatory Action Research in the Field of Neonatal Intensive Care

    DEFF Research Database (Denmark)

    Nørgaard, Betty; Johannessen, Helle; Fenger-Grøn, Jesper

    2016-01-01

    : This PAR process was carried out from August 2011 to July 2013 and included participant observations, semi-structured interviews, multi sequential interviews, workshops, focus groups, group discussion, and a seminar. The theoretical framework of validity described by Herr and Anderson's three criteria......BACKGROUND: In neonatal intensive care units (NICUs) health care professionals typically give most of their attention to the infants and the mothers while many fathers feel uncertain and have an unmet need for support and guidance. This paper describes and discusses participatory action research...

  14. Use of Mental Health Care and Unmet Needs for Health Care Among Lesbian and Bisexual Chinese-, Korean-, and Vietnamese-American Women.

    Science.gov (United States)

    Hahm, Hyeouk Chris; Lee, Jieha; Chiao, Christine; Valentine, Anne; Lê Cook, Benjamin

    2016-12-01

    This study examined associations between sexual orientation of Asian-American women and receipt of mental health care and unmet need for health care. Computer-assisted self-interviews were conducted with 701 unmarried Chinese-, Korean-, and Vietnamese-American women ages 18 to 35. Multivariate regression models examined whether lesbian and bisexual participants differed from exclusively heterosexual participants in use of mental health care and unmet need for health care. After the analyses controlled for mental health status and other covariates, lesbian and bisexual women were more likely than exclusively heterosexual women to have received any past-year mental health services and reported a greater unmet need for health care. Sexual-minority women were no more likely to have received minimally adequate care. Given the high rates of mental health problems among Asian-American sexual-minority women, efforts are needed to identify and overcome barriers to receipt of adequate mental health care and minimize unmet health care needs.

  15. Otolaryngology Needs in a Free Clinic Providing Indigent Care.

    Science.gov (United States)

    Hu, Amanda; Sibert, Thomas; Zhao, Wei; Zarro, Vincent

    2016-06-01

    To determine the otolaryngology needs in a free clinic providing care to medically indigent patients, as perceived by the patients and health care providers. Cross-sectional survey. A survey was administered to patients and health care providers of a free clinic from September 2014 through January 2015 in an urban, inner-city location. One hundred and thirty-seven patients (35.8% male, age 50.8 ± 13.0 years) completed the survey. Mean household income was $29,838 ± $10,425; 32.1% spoke English; 54.7% were employed; 10.2% had health insurance; and 37.2% had seen a primary care provider outside of the free clinic. The top three otolaryngology symptoms among patients were sleep apnea/snoring (39.4%), heartburn/reflux (30.7%), and dizziness (29.9%). Eleven health care providers (45% male, age 50.5 ± 15.3 years, 63.6% physician, 36% nurse) completed the survey. Providers perceived the following otolaryngology complaints as the most prevalent, in descending order: cough, nasal congestion, reflux/heartburn, sore throat, and ear infection/otalgia. Providers felt that sleep apnea and hearing loss were the less common otolaryngology complaints, whereas surveyed patients indicated these symptoms with high frequency. The most requested diagnostic tool among patients and providers was chest X-rays. There are unmet otolaryngology needs in a free clinic. Medically indigent patients have significant barriers to accessing health care. Patient and provider perceptions of top otolaryngology complaints differed, but both identified access to chest X-rays as a major unmet need. Knowledge of patient perceptions may help providers elicit the breadth of otolaryngology complaints. 4. Laryngoscope, 126:1321-1326, 2016. © 2015 The American Laryngological, Rhinological and Otological Society, Inc.

  16. THE NEED OF DASHBOARD IN SOCIAL RESEARCH NETWORK SITES FOR RESEARCHERS

    Directory of Open Access Journals (Sweden)

    Siti Hawa Apandi

    2016-02-01

    Full Text Available Nowadays, dashboard has been widely used by organizations to display information based on their objectives such as monitoring business performance or checking the current trend in the niche market. There is a need to investigate whether the researchers also need the dashboard in assisting their research works. There are some issues facing by researchers while using Social Research Network Sites (SRNS since they could not noticed with information related to research field that they might be interested in because they are huge amounts of information in the SRNS. The inclusion of dashboard in the SRNS has to be explored to understand its relevancy in supporting the researchers work. We review previous works regarding dashboard usage to find the purposes of having dashboard and find researcher needs by reviewing researchers use scenario in the social networking sites. Then, we analyze whether the dashboard purposes can satisfy the researcher needs. From the analysis, we found out that the dashboard is a significant tool in assisting the researchers on: measuring their own research performance, monitoring research trends and alerting them with upcoming events.

  17. Survivorship Care Plan Information Needs: Perspectives of Safety-Net Breast Cancer Patients.

    Science.gov (United States)

    Burke, Nancy J; Napoles, Tessa M; Banks, Priscilla J; Orenstein, Fern S; Luce, Judith A; Joseph, Galen

    2016-01-01

    Despite the Institute of Medicine's (IOM) 2005 recommendation, few care organizations have instituted standard survivorship care plans (SCPs). Low health literacy and low English proficiency are important factors to consider in SCP development. Our study aimed to identify information needs and survivorship care plan preferences of low literacy, multi-lingual patients to support the transition from oncology to primary care and ongoing learning in survivorship. We conducted focus groups in five languages with African American, Latina, Russian, Filipina, White, and Chinese medically underserved breast cancer patients. Topics explored included the transition to primary care, access to information, knowledge of treatment history, and perspectives on SCPs. Analysis of focus group data identified three themes: 1) the need for information and education on the transition between "active treatment" and "survivorship"; 2) information needed (and often not obtained) from providers; and 3) perspectives on SCP content and delivery. Our data point to the need to develop a process as well as written information for medically underserved breast cancer patients. An SCP document will not replace direct communication with providers about treatment, symptom management and transition, a communication that is missing in participating safety-net patients' experiences of cancer care. Women turned to peer support and community-based organizations in the absence of information from providers. "Clear and effective" communication of survivorship care for safety-net patients requires dedicated staff trained to address wide-ranging information needs and uncertainties.

  18. Is failure to meet spiritual needs associated with cancer patients' perceptions of quality of care and their satisfaction with care?

    Science.gov (United States)

    Astrow, Alan B; Wexler, Ann; Texeira, Kenneth; He, M Kai; Sulmasy, Daniel P

    2007-12-20

    Few studies regarding patients' views about spirituality and health care have included patients with cancer who reside in the urban, northeastern United States. Even fewer have investigated the relationship between patients' spiritual needs and perceptions of quality and satisfaction with care. Outpatients (N = 369) completed a questionnaire at the Saint Vincent's Comprehensive Cancer Center in New York, NY. The instrument included the Quality of End-of-Life Care and Satisfaction with Treatment quality-of-care scale and questions about spiritual and religious beliefs and needs. The participants' mean age was 58 years; 65% were female; 67% were white; 65% were college educated; and 32% had breast cancer. Forty-seven percent were Catholic; 19% were Jewish; 16% were Protestant; and 6% were atheist or agnostic. Sixty-six percent reported that they were spiritual but not religious. Only 29% attended religious services at least once per week. Seventy-three percent reported at least one spiritual need; 58% thought it appropriate for physicians to inquire about their spiritual needs. Eighteen percent reported that their spiritual needs were not being met. Only 6% reported that any staff members had inquired about their spiritual needs (0.9% of inquiries by physicians). Patients who reported that their spiritual needs were not being met gave lower ratings of the quality of care (P = .009) and reported lower satisfaction with care (P = .006). Most patients had spiritual needs. A slight majority thought it appropriate to be asked about these needs, although fewer thought this compared with reports in other settings. Few had their spiritual needs addressed by the staff. Patients whose spiritual needs were not met reported lower ratings of quality and satisfaction with care.

  19. Next-generation registries: fusion of data for care, and research.

    Science.gov (United States)

    Mandl, Kenneth D; Edge, Stephen; Malone, Chad; Marsolo, Keith; Natter, Marc D

    2013-01-01

    Disease-based registries are a critical tool for electronic data capture of high-quality, gold standard data for clinical research as well as for population management in clinical care. Yet, a legacy of significant operational costs, resource requirements, and poor data liquidity have limited their use. Research registries have engendered more than $3 Billion in HHS investment over the past 17 years. Health delivery systems and Accountable Care Organizations are investing heavily in registries to track care quality and follow-up of patient panels. Despite the investment, regulatory and financial models have often enforced a "single purpose" limitation on each registry, restricting the use of data to a pre-defined set of protocols. The need for cost effective, multi-sourced, and widely shareable registry data sets has never been greater, and requires next-generation platforms to robustly support multi-center studies, comparative effectiveness research, post-marketing surveillance and disease management. This panel explores diverse registry efforts, both academic and commercial, that have been implemented in leading-edge clinical, research, and hybrid use cases. Panelists present their experience in these areas as well as lessons learned, challenges addressed, and near innovations and advances.

  20. Unmet needs among men with human immunodeficiency virus in community mental health care: a cross-sectional study.

    Science.gov (United States)

    Durbin, Anna; Sirotich, Frank; Antoniou, Tony; Roesslein, Kay; Durbin, Janet; Lunsky, Yona

    2016-07-01

    While community-based mental health services play an important role in caring for persons with HIV (human immunodeficiency virus) and co-existing mental health disorders, the extent to which their support needs are addressed in this setting is unknown. Accordingly, we examined if HIV infection was associated with unmet support needs among men living with and without HIV receiving community mental health care. This cross-sectional study examined 215 men (135 living with HIV and 80 without HIV) receiving case management services in urban Ontario. Using the Camberwell Assessment of Need, we ascertained the prevalence of support needs in 13 domains grouped into three clusters: Basic needs (accommodation, food, benefits, and money management); self-care/functional needs (daytime activities, self-care, and looking after the home); and health/safety needs (physical, psychological distress, psychotic symptoms, safety to self, and safety to others). We used generalized estimating equations with a logit link to examine the association between HIV and unmet need in each domain. Compared to HIV-negative men, men with HIV were more likely to have mood and concurrent disorders, and intellectual and developmental disabilities. Following multivariable analyses, men with HIV had greater unmet needs related to food (odds ratio + 95% confidence interval: 9.36 (4.03, 21.75), p health and safety domains]. Despite living in a setting with universal health insurance, men with HIV receiving community mental health support had greater unmet need in basic and health domains than HIV-negative men receiving such support. Further research is required to develop and evaluate interventions to best support community-dwelling persons with HIV and mental health disorders.

  1. A Research Agenda for Radiation Oncology: Results of the Radiation Oncology Institute's Comprehensive Research Needs Assessment

    Energy Technology Data Exchange (ETDEWEB)

    Jagsi, Reshma, E-mail: rjagsi@med.umich.edu [Department of Radiation Oncology, University of Michigan, Ann Arbor, MI (United States); Bekelman, Justin E. [Department of Radiation Oncology, University of Pennsylvania, Philadelphia, PA (United States); Brawley, Otis W. [Department of Hematology and Oncology, Emory University, and American Cancer Society, Atlanta, Georgia (United States); Deasy, Joseph O. [Department of Radiation Oncology, Memorial Sloan-Kettering Cancer Center, New York, NY (United States); Le, Quynh-Thu [Department of Radiation Oncology, Stanford University, Stanford, CA (United States); Michalski, Jeff M. [Department of Radiation Oncology, Washington University, St. Louis, MO (United States); Movsas, Benjamin [Department of Radiation Oncology, Henry Ford Health System, Detroit, MI (United States); Thomas, Charles R. [Department of Radiation Oncology, Oregon Health and Sciences University, Portland, OR (United States); Lawton, Colleen A. [Department of Radiation Oncology, Medical College of Wisconsin, Milwaukee, WI (United States); Lawrence, Theodore S. [Department of Radiation Oncology, University of Michigan, Ann Arbor, MI (United States); Hahn, Stephen M. [Department of Radiation Oncology, University of Pennsylvania, Philadelphia, PA (United States)

    2012-10-01

    Purpose: To promote the rational use of scarce research funding, scholars have developed methods for the systematic identification and prioritization of health research needs. The Radiation Oncology Institute commissioned an independent, comprehensive assessment of research needs for the advancement of radiation oncology care. Methods and Materials: The research needs assessment used a mixed-method, qualitative and quantitative social scientific approach, including structured interviews with diverse stakeholders, focus groups, surveys of American Society for Radiation Oncology (ASTRO) members, and a prioritization exercise using a modified Delphi technique. Results: Six co-equal priorities were identified: (1) Identify and develop communication strategies to help patients and others better understand radiation therapy; (2) Establish a set of quality indicators for major radiation oncology procedures and evaluate their use in radiation oncology delivery; (3) Identify best practices for the management of radiation toxicity and issues in cancer survivorship; (4) Conduct comparative effectiveness studies related to radiation therapy that consider clinical benefit, toxicity (including quality of life), and other outcomes; (5) Assess the value of radiation therapy; and (6) Develop a radiation oncology registry. Conclusions: To our knowledge, this prioritization exercise is the only comprehensive and methodologically rigorous assessment of research needs in the field of radiation oncology. Broad dissemination of these findings is critical to maximally leverage the impact of this work, particularly because grant funding decisions are often made by committees on which highly specialized disciplines such as radiation oncology are not well represented.

  2. Access to mental health care among women Veterans: is VA meeting women's needs?

    Science.gov (United States)

    Kimerling, Rachel; Pavao, Joanne; Greene, Liberty; Karpenko, Julie; Rodriguez, Allison; Saweikis, Meghan; Washington, Donna L

    2015-04-01

    Patient-centered access to mental health describes the fit between patient needs and resources of the system. To date, little data are available to guide implementation of services to women veterans, an underrepresented minority within Department of Veteran Affairs (VA) health care. The current study examines access to mental health care among women veterans, and identifies gender-related indicators of perceived access to mental health care. A population-based sample of 6287 women veterans using VA primary care services participated in a survey of past year perceived need for mental health care, mental health utilization, and gender-related mental health care experiences. Subjective rating of how well mental health care met their needs was used as an indicator of perceived access. Half of all women reported perceived mental health need; 84.3% of those women received care. Nearly all mental health users (90.9%) used VA services, although only about half (48.8%) reported that their mental health care met their needs completely or very well. Gender related experiences (availability of female providers, women-only treatment settings, women-only treatment groups, and gender-related comfort) were each associated with 2-fold increased odds of perceived access, and associations remained after adjusting for ease of getting care. Women VA users demonstrate very good objective access to mental health services. Desire for, and access to specialized mental health services for women varies across the population and are important aspects of shared decision making in referral and treatment planning for women using VA primary care.

  3. Can digital stories go where palliative care research has never gone before? A descriptive qualitative study exploring the application of an emerging public health research method in an indigenous palliative care context.

    Science.gov (United States)

    Williams, Lisa; Gott, Merryn; Moeke-Maxwell, Tess; Black, Stella; Kothari, Shuchi; Pearson, Sarina; Morgan, Tessa; Wharemate, Matua Rawiri; Hansen, Whaea Whio

    2017-09-04

    The World Health Organization (WHO) has called for global approaches to palliative care development. Yet it is questionable whether one-size-fits-all solutions can accommodate international disparities in palliative care need. More flexible research methods are called for in order to understand diverse priorities at local levels. This is especially imperative for Indigenous populations and other groups underrepresented in the palliative care evidence-base. Digital storytelling (DST) offers the potential to be one such method. Digital stories are short first-person videos that tell a story of great significance to the creator. The method has already found a place within public health research and has been described as a useful, emergent method for community-based participatory research. The aim of this study was to explore Māori participants' views on DST's usefulness, from an Indigenous perspective, as a research method within the discipline of palliative care. The digital storytelling method was adapted to include Māori cultural protocols. Data capturing participant experience of the study were collected using participant observation and anonymous questionnaires. Eight participants, seven women and one man, took part. Field notes and questionnaire data were analysed using critical thematic analysis. Two main themes were identified during analyses: 1) issues that facilitated digital storytelling's usefulness as a research method for Māori reporting on end of life caregiving; and 2) issues that hindered this process. All subthemes identified: recruitment, the pōwhiri process, (Māori formal welcome of visitors) and technology, related to both main themes and are presented in this way. Digital storytelling is an emerging method useful for exploring Indigenous palliative care issues. In line with a Health Promoting Palliative Care approach that centres research in communities, it helps meet the need for diverse approaches to involve underrepresented groups.

  4. Well-being of nursing staff on specialized units for older patients with combined care needs.

    Science.gov (United States)

    Collet, J; de Vugt, M E; Schols, J M G A; Engelen, G J J A; Winkens, B; Verhey, F R J

    2018-03-01

    Working in long-term care is seen as a stressful, physically and mentally demanding occupation, and thus, nursing staff are at risk for work and stress-related diseases. In older patients, psychiatric illnesses often occur in combination with physical illnesses, requiring nursing care that is specific to these combined care needs. The impact of caring for these patients on the mental well-being of nurses is unknown. Nursing staff working on specialized units for patients with combined care needs experience high levels of self-efficacy in combination with strong feelings of self-rated competence. Although levels of burnout are relatively low, mental healthcare nursing staff is more at risk for burnout when working in specialized settings for patients with combined care needs than nursing home staff working in specialized settings for these patients. Nursing staff characteristics, such as years of working experience and age, seem more important in relation to staff well-being than patient characteristics in specialized settings for combined care needs. Staff well-being might benefit from specializing care, so that patients with similar care needs are placed together and care is focused. The presence of specialized care units for older patients with combined care needs can allow for both targeted and focused allocation of nursing staff to these units and provision of specific training. Introduction In older patients, psychiatric illnesses frequently exist in tandem with physical illnesses, requiring nursing care that is specific to these combined care needs. The impact of caring for these patients on the mental well-being of nursing staff is unknown. To investigate whether care characteristics of patients with combined care needs are related to the mental well-being of nursing staff. Well-being of nursing staff was studied within a larger exploratory observational cross-sectional study that examined the differences and similarities of specialized combined care units

  5. Nurses Empathy and Family Needs in the Intensive Care Units

    Directory of Open Access Journals (Sweden)

    Sima Moghaddasian

    2013-08-01

    Full Text Available Introduction: The patients’ families in intensive care units (ICUs experience excessive stress which may disrupt their performance in daily life. Empathy is basic to the nursing role and has been found to be associated with improved patient outcomes and greater satisfaction with care in patient and his/her family. However, few studies have investigated the nursing empathy with ICU patients. This study aimed to assess nursing empathy and its relationship with the needs, from the perspective of families of patients in ICU.Methods: In this cross-sectional study, 418 subjects were selected among families of patients admitted to ICUs in Tabriz, Iran, by convenience sampling, from May to August 2012. Data were collected through Barrett-Lennard Relationship inventory (BLRI empathy scale and Critical Care Family Needs Intervention (CCFNI inventories and were analyzed using descriptive and inferential statistical tests. Results: Findings showed that most of the nurses had high level of empathy to the patients (38.8%. There was also statistically significant relationship between nurses’ empathy and needs of patients’ families (p < 0.001. Conclusion: In this study we found that by increasing the nurse’s empathy skills, we would be able to improve providing family needs. Through empathic communication, nurses can encourage family members to participate in planning for the care of their patients. However, further studies are necessary to confirm the results.

  6. [Qualitative research methodology in health care].

    Science.gov (United States)

    Bedregal, Paula; Besoain, Carolina; Reinoso, Alejandro; Zubarew, Tamara

    2017-03-01

    Health care research requires different methodological approaches such as qualitative and quantitative analyzes to understand the phenomena under study. Qualitative research is usually the least considered. Central elements of the qualitative method are that the object of study is constituted by perceptions, emotions and beliefs, non-random sampling by purpose, circular process of knowledge construction, and methodological rigor throughout the research process, from quality design to the consistency of results. The objective of this work is to contribute to the methodological knowledge about qualitative research in health services, based on the implementation of the study, “The transition process from pediatric to adult services: perspectives from adolescents with chronic diseases, caregivers and health professionals”. The information gathered through the qualitative methodology facilitated the understanding of critical points, barriers and facilitators of the transition process of adolescents with chronic diseases, considering the perspective of users and the health team. This study allowed the design of a transition services model from pediatric to adult health services based on the needs of adolescents with chronic diseases, their caregivers and the health team.

  7. Unmet care needs of the oldest old with late-life depression: A comparison of patient, caring relative and general practitioner perceptions - Results of the AgeMooDe study.

    Science.gov (United States)

    Stein, Janine; Pabst, Alexander; Weyerer, Siegfried; Werle, Jochen; Maier, Wolfgang; Miebach, Lisa; Scherer, Martin; Stark, Anne; Kaduszkiewicz, Hanna; Wiese, Birgitt; Moor, Lilia; Bock, Jens-Oliver; König, Hans-Helmut; Riedel-Heller, Steffi G

    2016-11-15

    Research showed that the perception of unmet needs may differ between patients, caregivers and professionals. Lacking agreement with regard to unmet needs between raters involved may have a negative impact on treatment of late-life depression. As part of the multicenter German study "Late-life depression in primary care: needs, health care utilization and costs" (AgeMooDe), n=1188 primary care patients aged 75-98 with and without depression, relatives (n=366) and general practitioners (GPs, n=1152) were assessed using the German version of the Camberwell Assessment of Need for the Elderly (CANE) in order to identify patients' unmet needs from different perspectives. Kappa coefficients were computed to determine level of agreement between perspectives. Penalized likelihood logistic regression models were run in order to assess the association between depression severity and disagreement between perspectives with regard to unmet needs. The prevalence of unmet needs was higher in depressive patients. Kappa coefficients were on average higher for depressive patients ranging from poor to substantial. Severity of depression was significantly associated with disagreement regarding unmet needs between perspectives. The cross-sectional design of the study limits the results. Only a part of caring relatives was able to participate. Perceptions of unmet needs in the oldest old primary care patients suffering from depression strongly differ between raters. Severity of depression seems to exacerbate the discrepancy between involved perspectives. The negative impact that depression severity may have on the perception and assessment of unmet needs requires greater attention by GPs. Copyright © 2016 Elsevier B.V. All rights reserved.

  8. Emerging organisational models of primary healthcare and unmet needs for care: insights from a population-based survey in Quebec province

    Directory of Open Access Journals (Sweden)

    Levesque Jean-Frédéric

    2012-07-01

    Full Text Available Abstract Background Reform of primary healthcare (PHC organisations is underway in Canada. The capacity of various types of PHC organizations to respond to populations’ needs remains to be assessed. The main objective of this study was to evaluate the association of PHC affiliation with unmet needs for care. Methods Population-based survey of 9205 randomly selected adults in two regions of Quebec, Canada. Outcomes Self-reported unmet needs for care and identification of the usual source of PHC. Results Among eligible adults, 18 % reported unmet needs for care in the last six months. Reasons reported for unmet needs were: waiting times (59 % of cases; unavailability of usual doctor (42 %; impossibility to obtain an appointment (36 %; doctors not accepting new patients (31 %. Regression models showed that unmet needs were decreasing with age and was lower among males, the least educated, and unemployed or retired. Controlling for other factors, unmet needs were higher among the poor and those with worse health status. Having a family doctor was associated with fewer unmet needs. People reporting a usual source of care in the last two-years were more likely to report unmet need for care. There were no differences in unmet needs for care across types of PHC organisations when controlling for affiliation with a family physician. Conclusion Reform models of primary healthcare consistent with the medical home concept did not differ from other types of organisations in our study. Further research looking at primary healthcare reform models at other levels of implementation should be done.

  9. Infertile men's needs and asssessment of fertility care

    DEFF Research Database (Denmark)

    Sylvest, Randi; Fürbringer, Jeanette Krogh; Schmidt, Lone

    2016-01-01

    Introduction: Male infertility is potentially a severe, low-control stressor. There is limited knowledge of the expectations, needs, and assessment of fertility care among men with severe infertility. The aim of this study was to explore experience, expectations, needs, and assessment of fertility....... The men appreciated the staff’s kindness and professionalism but desired the staff to address emotional subjects too. Conclusion: The process from referral to treatment felt like a maze for these men. They needed the staff to give them the opportunity to speak of the psychosocial consequences of severe...

  10. Youth with special health care needs: transition to adult health care services.

    Science.gov (United States)

    Oswald, Donald P; Gilles, Donna L; Cannady, Mariel S; Wenzel, Donna B; Willis, Janet H; Bodurtha, Joann N

    2013-12-01

    Transition to adult services for children and youth with special health care needs (CYSHCN) has emerged as an important event in the life course of individuals with disabilities. Issues that interfere with efficient transition to adult health care include the perspectives of stakeholders, age limits on pediatric service, complexity of health conditions, a lack of experienced healthcare professionals in the adult arena, and health care financing for chronic and complex conditions. The purposes of this study were to develop a definition of successful transition and to identify determinants that were associated with a successful transition. The 2007 Survey of Adult Transition and Health dataset was used to select variables to be considered for defining success and for identifying predictors of success. The results showed that a small percentage of young adults who participated in the 2007 survey had experienced a successful transition from their pediatric care.

  11. Meeting psychosocial needs for persons with dementia in home care services - a qualitative study of different perceptions and practices among health care providers.

    Science.gov (United States)

    Hansen, Anette; Hauge, Solveig; Bergland, Ådel

    2017-09-11

    The majority of persons with dementia are home-dwelling. To enable these persons to stay in their own homes as long as possible, a holistic, individual and flexible care is recommended. Despite a requirement for meeting psychological, social and physical needs, home care services seem to focus on patients' physical needs. Accordingly, the aim of this study was to explore how the psychosocial needs of home-dwelling, older persons with dementia were perceived, emphasized and met by home care services. A descriptive, qualitative approach was used. Data were collected through semi-structured focus group interviews with 24 health care providers in home care services from four municipalities. Data were analysed using systematic text condensation. This study showed major differences in how health care providers perceived the psychosocial needs of older home-dwelling persons with dementia and how they perceived their responsibilities for meeting those psychosocial needs. The differences in the health care providers' perceptions seemed to significantly influence the provided care. Three co-existing logics of care were identified: the physical need-oriented logic, the renouncement logic and the integrated logic. The differences in how health care providers perceived the psychosocial needs of persons with dementia and their responsibilities for meeting those needs, influenced how the psychosocial needs were met. These differences indicates a need for a clarification of how psychosocial needs should be conceptualized and who should be responsible for meeting these needs. Further, increased competence and increased consciousness of psychosocial needs and how those needs can be met, are essential for delivering high-quality holistic care that enables persons with dementia to live in their own home for as long as possible.

  12. African Primary Care Research: qualitative interviewing in primary care.

    Science.gov (United States)

    Reid, Steve; Mash, Bob

    2014-06-05

    This article is part of a series on African Primary Care Research and focuses on the topic of qualitative interviewing in primary care. In particular it looks at issues of study design, sample size, sampling and interviewing in relation to individual and focus group interviews.There is a particular focus on helping postgraduate students at a Masters level to write their research proposals.

  13. African Primary Care Research: Participatory action research

    OpenAIRE

    Mash, Bob

    2014-01-01

    This article is part of the series on African primary care research and focuses on participatory action research. The article gives an overview of the emancipatory-critical research paradigm, the key characteristics and different types of participatory action research. Following this it describes in detail the methodological issues involved in professional participatory action research and running a cooperative inquiry group. The article is intended to help students with writing their researc...

  14. Challenges in conducting research in pediatric long-term care facilities.

    Science.gov (United States)

    Larson, Elaine L; Cohen, Bevin; Murray, Meghan; Saiman, Lisa

    2014-10-01

    Children residing in long-term care facilities (LTCFs) have complex medical problems and unique care needs, yet research in this setting is rare. As part of an intervention study to improve patient safety (Keep It Clean for Kids [KICK]), we describe the challenges encountered and recommend approaches to build a successful and sustained collaborative relationship between pediatric LTCFs and the research team. We implemented a program with 5 components: leadership commitment, active staff participation by the creation of KICK teams, workflow assessments, staff training in the World Health Organization's "5 Moments for Hand Hygiene," and electronic monitoring and feedback to staff regarding hand hygiene practices. Major challenges encountered were establishing trust, building research teams, enhancing staff participation, and engaging families and visitors. Approaches to deal with these challenges are discussed. Conducting research in pediatric LTCFs requires sustained commitment to dealing with challenges and establishing collaborative relationships with administrative and frontline staff. © The Author(s) 2014.

  15. An interprofessional education project to address the health care needs of women transitioning from prison to community reentry.

    Science.gov (United States)

    Busen, Nancy H

    2014-01-01

    With the implementation of the Patient Protection and Affordable Care Act, the need for health care providers to work collaboratively in teams to provide cost-effective, quality health care has become even more apparent because an estimated additional 22 million Americans gain health care coverage by 2014. The need for evidenced-based care that combines the expertise of various disciplines has been acknowledged by policy makers and health educators. With support from national Association for Prevention, Teaching and Research, an interprofessional education course was designed and implemented by health professionals in nursing, nutrition, and dentistry, in collaboration with a local community agency, to address the health care needs of women transitioning from prison to the community. Health care needs of women in prison are often overlooked, and access to care is limited. When released from prison, utilization of even basic health services is rare. Four interactive teaching-learning sessions were offered at a residential facility for women in transition over a 12-week period. Topics were selected based on feedback from the participants and included stress reduction, self-beast examination, hypertension, and common dental conditions. Teaching methods and materials were interactive and designed for sustainability. The model for this interprofessional education project, which employed a service-learning approach, can be adapted for other communities. Working with our communities requires innovative thinking to be effective but provides an enriching life experience to those involved. A community-based reciprocal learning environment benefits all partners in the real-world environment. Copyright © 2014 Elsevier Inc. All rights reserved.

  16. Health research capacity building in Georgia: a case-based needs assessment.

    Science.gov (United States)

    Squires, A; Chitashvili, T; Djibuti, M; Ridge, L; Chyun, D

    2017-06-01

    Research capacity building in the health sciences in low- and middle-income countries (LMICs) has typically focused on bench-science capacity, but research examining health service delivery and health workforce is equally necessary to determine the best ways to deliver care. The Republic of Georgia, formerly a part of the Soviet Union, has multiple issues within its healthcare system that would benefit from expended research capacity, but the current research environment needs to be explored prior to examining research-focused activities. The purpose of this project was to conduct a needs assessment focused on developing research capacity in the Republic of Georgia with an emphasis on workforce and network development. A case study approach guided by a needs assessment format. We conducted in-country, informal, semi-structured interviews in English with key informants and focus groups with faculty, students, and representatives of local non-governmental organizations. Purposive and snowball sampling approaches were used to recruit participants, with key informant interviews scheduled prior to arrival in country. Documents relevant to research capacity building were also included. Interview results were coded via content analysis. Final results were organized into a SWOT (strengths, weaknesses, opportunities, threat) analysis format, with the report shared with participants. There is widespread interest among students and faculty in Georgia around building research capacity. Lack of funding was identified by many informants as a barrier to research. Many critical research skills, such as proposal development, qualitative research skills, and statistical analysis, were reported as very limited. Participants expressed concerns about the ethics of research, with some suggesting that research is undertaken to punish or 'expose' subjects. However, students and faculty are highly motivated to improve their skills, are open to a variety of learning modalities, and have

  17. Health benefits of primary care social work for adults with complex health and social needs: a systematic review.

    Science.gov (United States)

    McGregor, Jules; Mercer, Stewart W; Harris, Fiona M

    2018-01-01

    The prevalence of complex health and social needs in primary care patients is growing. Furthermore, recent research suggests that the impact of psychosocial distress on the significantly poorer health outcomes in this population may have been underestimated. The potential of social work in primary care settings has been extensively discussed in both health and social work literature and there is evidence that social work interventions in other settings are particularly effective in addressing psychosocial needs. However, the evidence base for specific improved health outcomes related to primary care social work is minimal. This review aimed to identify and synthesise the available evidence on the health benefits of social work interventions in primary care settings. Nine electronic databases were searched from 1990 to 2015 and seven primary research studies were retrieved. Due to the heterogeneity of studies, a narrative synthesis was conducted. Although there is no definitive evidence for effectiveness, results suggest a promising role for primary care social work interventions in improving health outcomes. These include subjective health measures and self-management of long-term conditions, reducing psychosocial morbidity and barriers to treatment and health maintenance. Although few rigorous study designs were found, the contextual detail and clinical settings of studies provide evidence of the practice applicability of social work intervention. Emerging policy on the integration of health and social care may provide an opportunity to develop this model of care. © 2016 John Wiley & Sons Ltd.

  18. Palliative Care Research--A Systematic Review of foci, designs and methods of research conducted in Sweden between 2007 and 2012.

    Science.gov (United States)

    Henoch, Ingela; Carlander, Ida; Holm, Maja; James, Inger; Sarenmalm, Elisabeth Kenne; Hagelin, Carina Lundh; Lind, Susanne; Sandgren, Anna; Öhlén, Joakim

    2016-03-01

    In 2007, a literature review was undertaken of palliative care research from Sweden during the 1970s-2006, paving the way for a follow-up study to explore the recent developments. The aim was to systematically examine palliative care research from Sweden between 2007 and 2012, with special attention to methods, designs and research foci. A literature review was undertaken. The databases Academic search elite, Age line, Ahmed, Cinahl, PsychInfo, PubMed, Scopus, Soc abstracts, Web of science and Libris were reviewed for Swedish palliative care research studies published from 2007 to 2012, applying the search criteria 'palliative care OR palliative medicine OR end-of-life care OR terminal care OR hospice care OR dying OR death'. A total of 263 papers met the inclusion criteria, indicating an increased volume of research compared to the 133 articles identified in the previous review. Common study foci were symptom assessment and management, experiences of illness and care planning. Targeting non-cancer-specific populations and utilisation of population-based register studies were identified as new features. There was continued domination of cross-sectional, qualitative and mono-disciplinary studies, not including ethnic minority groups, nonverbally communicable people or children research has expanded in volume from 2007 to 2012 compared to during the 1970s to 2006, with increasing participation of non-cancer-specific populations. A domination of qualitative approaches and small, cross-sectional studies with few interventions is still characteristic. Still more strategies are needed to expand the knowledge development of palliative care to respond to demographical, epidemiological, therapeutic and healthcare structure changes. © 2015 Nordic College of Caring Science.

  19. Capacity for Cancer Care Delivery Research in National Cancer Institute Community Oncology Research Program Community Practices: Availability of Radiology and Primary Care Research Partners.

    Science.gov (United States)

    Carlos, Ruth C; Sicks, JoRean D; Chang, George J; Lyss, Alan P; Stewart, Teresa L; Sung, Lillian; Weaver, Kathryn E

    2017-12-01

    Cancer care spans the spectrum from screening and diagnosis through therapy and into survivorship. Delivering appropriate care requires patient transitions across multiple specialties, such as primary care, radiology, and oncology. From the program's inception, the National Cancer Institute Community Oncology Research Program (NCORP) sites were tasked with conducting cancer care delivery research (CCDR) that evaluates structural, organizational, and social factors, including care transitions that determine patient outcomes. The aim of this study is to describe the capacity of the NCORP to conduct multidisciplinary CCDR that includes radiology and primary care practices. The NCORP includes 34 community and 12 minority and underserved community sites. The Landscape Capacity Assessment was conducted in 2015 across these 46 sites, composed of the 401 components and subcomponents designated to conduct CCDR. Each respondent had the opportunity to designate an operational practice group, defined as a group of components and subcomponents with common care practices and resources. The primary outcomes were the proportion of adult oncology practice groups with affiliated radiology and primary care practices. The secondary outcomes were the proportion of those affiliated radiology and primary care groups that participate in research. Eighty-seven percent of components and subcomponents responded to at least some portion of the assessment, representing 230 practice groups. Analyzing the 201 adult oncology practice groups, 85% had affiliated radiologists, 69% of whom participate in research. Seventy-nine percent had affiliated primary care practitioners, 31% of whom participate in research. Institutional size, multidisciplinary group practice, and ownership by large regional or multistate health systems was associated with research participation by affiliated radiology and primary care groups. Research participation by these affiliated specialists was not significantly

  20. Exploring Education and Training Needs in Palliative Care among Family Physicians in Mumbai: A Qualitative Study.

    Science.gov (United States)

    Damani, Anuja; Ghoshal, Arunangshu; Dighe, Manjiri; Dhiliwal, Sunil; Muckaden, Maryann

    2018-01-01

    Patients with chronic life-limiting conditions on palliative care (PC) prefer to be treated at home. Medical care by family physicians (FPs) reduces demand on costly and busy hospital facilities. Working of PC team in collaboration with FPs is thus helpful in home-based management of patients. This study aimed at exploring the extent of knowledge of FPs about PC and the need for additional training. Semi-structured interviews were conducted with ten FPs from two suburbs of Mumbai, currently served by home care services of a tertiary cancer care center. Data were digitally recorded, transcribed, and analyzed using exploratory analysis followed by content analysis to develop thematic codes. FPs perceive PC as symptom control and psychological support helpful in managing patients with advanced life-limiting illnesses. Further training would help them in PC provision. Such training programs should preferably focus on symptom management and communication skills. There is a need for further research in designing a training module for FPs to get better understanding of the principles of PC.

  1. [Models of care and classification of "Children with special health care needs-CSHCN": Recommendations from the CSHCN Committee, Chilean Paediatric Society].

    Science.gov (United States)

    Flores Cano, Juan Carlos; Lizama Calvo, Macarena; Rodríguez Zamora, Natalie; Ávalos Anguita, María Eugenia; Galanti De La Paz, Mónica; Barja Yañez, Salesa; Becerra Flores, Carlos; Sanhueza Sepúlveda, Carolina; Cabezas Tamayo, Ana María; Orellana Welch, Jorge; Zillmann Geerdts, Gisela; Antilef, Rosa María; Cox Melane, Alfonso; Valle Maluenda, Marcelo; Vargas Catalán, Nelson

    2016-01-01

    "Children with special health care needs" (CSHCN) is an emerging and heterogeneous group of paediatric patients, with a wide variety of medical conditions and with different uses of health care services. There is consensus on how to classify and assess these patients according to their needs, but not for their specific diagnosis. Needs are classified into 6 areas: a) specialised medical care; b) use or need of prescription medication; c) special nutrition; d) dependence on technology; e) rehabilitation therapy for functional limitation; and f) special education services. From the evaluation of each area, a classification for CSHCN is proposed according to low, medium, or high complexity health needs, to guide and distribute their care at an appropriate level of the health care system. Low complexity CSHCN should be incorporated into Primary Care services, to improve benefits for patients and families at this level. It is critical to train health care professionals in taking care of CSHCN, promoting a coordinated, dynamic and communicated work between different levels of the health care system. Compliance with these guidelines will achieve a high quality and integrated care for this vulnerable group of children. Copyright © 2016 Sociedad Chilena de Pediatría. Publicado por Elsevier España, S.L.U. All rights reserved.

  2. Care management: agreement between nursing prescriptions and patients' care needs.

    Science.gov (United States)

    Faeda, Marília Silveira; Perroca, Márcia Galan

    2016-08-08

    analyze agreement between nursing prescriptions recorded in medical files and patients' care needs; investigate the correlation between the nurses' professional background and agreement of prescriptions. descriptive study with quantitative and documentary approach conducted in the medical clinic, surgical, and specialized units of a university hospital in the interior of São Paulo, Brazil. The new validated version of a Patient Classification Instrument was used and 380 nursing prescriptions written at the times of hospital admission and discharge were assessed. 75% of the nursing prescriptions items were compatible with the patients' care needs. Only low correlation between nursing prescription agreement and professional background was found. the nursing prescriptions did not fully meet the care needs of patients. The care context and work process should be analyzed to enable more effective prescriptions, while strategies to assess the care needs of patients are recommended. analisar a concordância entre prescrições de enfermagem, registradas nos prontuários, e as necessidades de cuidados dos pacientes; investigar a correlação entre o perfil profissional dos enfermeiros e a concordância das prescrições. estudo descritivo com abordagem quantitativa e documental, realizado em unidades de clínica médica, cirúrgica e especializada de um hospital de ensino, no interior do Estado de São Paulo. Foi aplicada a nova versão validada do Instrumento de Classificação de Pacientes e, posteriormente, investigadas 380 prescrições de enfermagem no momento da admissão e alta hospitalar. foi identificado que 75% dos itens das prescrições de enfermagem estavam compatíveis com as necessidades cuidativas dos pacientes. Encontrou-se baixa correlação entre a concordância da prescrição de enfermagem e o perfil profissional. as prescrições de enfermagem não estão sendo realizadas, em sua totalidade, em consonância com as necessidades dos pacientes. Para

  3. [The Need for Psychosocial Support of Parents of Children in Neonatal Care].

    Science.gov (United States)

    Schäfer, Nicole; Karutz, Harald; Schenk, Olaf

    2017-10-01

    Background Advances in neonatal care have reduced mortality but increased morbidity in babies born pre-maturely or after high-risk pregnancies. However, this often increases the burden on the family and the parents in particular. A systematic review of the literature was conducted that demonstrated the importance of psychosocial support for parents of children in neonatal care. Methods A systematic search of Pubmed, Psyndex, CINAHI and medpilot was conducted. Reference lists of the included articles were also searched for relevant publications. A free-text search found further publications. Together, 78 publications (from 1975-2015) were included in our review. Results A shift from a biomedical model and child-centred treatment to family-centred care has already taken place in neonatal care. However, there is still a considerable gap between theory and practice. Although there is awareness of the need for psychosocial support of parents, the focus of day-to-day care is still on medical interventions and life-supporting treatment for the child. In particular, while the importance of an assessment of needs as a basis for family-centred psychosocial support appears to be well-known, validated screening instruments are rarely used. In addition, the demand for psychosocial support of parents is not just solely determined by the child's medical risk. Conclusions The results highlight the challenges of delivering individualised psychosocial support to families within a healthcare system of limited resources, with practitioners having to take into account the developing parent-child relationship as well as health economics. In future, psychosocial support should be based on evidence rather than intuition. Attachment theory and research, and health psychology can contribute to this development. © Georg Thieme Verlag KG Stuttgart · New York.

  4. Palliative care in India: Current progress and future needs

    Directory of Open Access Journals (Sweden)

    Divya Khosla

    2012-01-01

    Full Text Available Despite its limited coverage, palliative care has been present in India for about 20 years. Obstacles in the growth of palliative care in India are too many and not only include factors like population density, poverty, geographical diversity, restrictive policies regarding opioid prescription, workforce development at base level, but also limited national palliative care policy and lack of institutional interest in palliative care. Nonetheless we have reasons to be proud in that we have overcome several hurdles and last two decades have seen palpable changes in the mindset of health care providers and policy makers with respect to need of palliative care in India. Systematic and continuous education for medical staff is mandatory, and a major break-through for achieving this purpose would be to increase the number of courses and faculties in palliative medicine at most universities.

  5. Need and feasibility of telemedicine in non-urban day care centres.

    Science.gov (United States)

    Setia, Monika; DelliFraine, Jami L

    2010-01-01

    There appear to have been no studies of telemedicine in rural day care centres. We have assessed the feasibility of using telemedicine in eight rural day care centres in Pennsylvania, from the day care centres' perspective. The average number of children in these centres was 76 (range 20-150). The centres sent an average of 4.7 children home each month because of illness. Using telephone and face-to-face interviews, we assessed their perceived need for and familiarity with telemedicine, as well as their openness and preparedness for implementing telemedicine. Most day care centres reported a need for telemedicine and were open to learning how to use it. Some centres were concerned about adequate space for the equipment, but overall, the centres felt that their resources were adequate. Telemedicine in rural day care centres appears to be feasible, and would have the potential to save time and money for parents, as well as perhaps improving health care for children in rural areas.

  6. Videoconferencing for Health Care Provision for Older Adults in Care Homes: A Review of the Research Evidence

    Directory of Open Access Journals (Sweden)

    Louise Newbould

    2017-01-01

    Full Text Available A scoping review was conducted to map the research evidence on the use of videoconferencing for remote health care provision for older adults in care homes. The review aimed to identify the nature and extent of the existing evidence base. Databases used were Embase, Medline, Web of Science, and Cochrane Library Reviews. The review identified 26 articles for inclusion, of which 14 were case studies, making the most used study design. Papers described videoconferencing as being used for assessment, management of health care, clinical support, and diagnosis, with eight of the papers reporting the use of videoconferencing for more than one clinical purpose. A further eight papers reported the use of videoconferencing for assessment alone. The literature reported the collection of various types of data, with 12 papers describing the use of both qualitative and quantitative data. The outcomes mainly addressed staff satisfaction (n=9 and resident satisfaction (n=8. Current evidence supports the feasibility of videoconferencing in care homes. However, research needs to be undertaken to establish the contexts and mechanisms that underpin the successful implementation of videoconferencing in care homes and to define useful measures for success.

  7. Videoconferencing for Health Care Provision for Older Adults in Care Homes: A Review of the Research Evidence.

    Science.gov (United States)

    Newbould, Louise; Mountain, Gail; Hawley, Mark S; Ariss, Steven

    2017-01-01

    A scoping review was conducted to map the research evidence on the use of videoconferencing for remote health care provision for older adults in care homes. The review aimed to identify the nature and extent of the existing evidence base. Databases used were Embase, Medline, Web of Science, and Cochrane Library Reviews. The review identified 26 articles for inclusion, of which 14 were case studies, making the most used study design. Papers described videoconferencing as being used for assessment, management of health care, clinical support, and diagnosis, with eight of the papers reporting the use of videoconferencing for more than one clinical purpose. A further eight papers reported the use of videoconferencing for assessment alone. The literature reported the collection of various types of data, with 12 papers describing the use of both qualitative and quantitative data. The outcomes mainly addressed staff satisfaction ( n = 9) and resident satisfaction ( n = 8). Current evidence supports the feasibility of videoconferencing in care homes. However, research needs to be undertaken to establish the contexts and mechanisms that underpin the successful implementation of videoconferencing in care homes and to define useful measures for success.

  8. Addressing Medical Needs of Adolescents and Adults with Autism Spectrum Disorders in a Primary Care Setting

    Science.gov (United States)

    Saqr, Youssra; Braun, Erika; Porter, Kyle; Barnette, Debra; Hanks, Christopher

    2018-01-01

    Little has been reported about how to improve health care access and delivery for adolescents and adults with autism spectrum disorder. To understand the contributions to the health disparities in the autism spectrum disorder population, we conducted two independent research approaches to learn about current medical needs. A retrospective chart…

  9. Delivering primary care in prison: the need to improve health information

    Directory of Open Access Journals (Sweden)

    Sudy Anaraki

    2003-12-01

    Conclusions To provide 'equivalence of care' for prisoners, primary care trusts need to implement full electronic clinical records in prisons and ensure staff have access to resources on the internet.

  10. [Exploration of the Care Needs of Post-Chemotherapy Lung Cancer Patients and Related Factors].

    Science.gov (United States)

    Chiu, Hui-Ying; Lin, Yu-Hua; Wang, Chin-Chou; Chen, Wan-Yi; Chang, Huang-Chih; Lin, Meng-Chih

    2016-06-01

    Chemotherapy (CT) is the first priority treatment for advanced stage lung cancer. However, symptom distress, impaired ability to conduct daily activities, and post-CT care needs are potential side effects of CT. To explore the factors related to the care needs of post-chemotherapy lung cancer patients. A cross-sectional study was used. One hundred and twenty-one adult patients who had been diagnosed with advanced-stage lung cancer and who had undergone CT using the Platinum and Docetaxel doublet regimen were recruited from a medical center in southern Taiwan. The instruments used included a nursing care needs survey, symptoms distress scale, daily activity interference scale, and patient characteristics datasheet. Participants self-prioritized their emergency management, health consultation, and emotional support activities based on their perceived care needs. The top three post-CT symptoms in terms of severity were: fatigue, appetite change, and sleep disorder. Primary disruptions in daily activities during the post-CT period related to: holding social activities, work, and stair climbing. Significant and positive correlations were found among daily activity interference (r = .30, p needs. The regression model indicated daily activity interference as a predictor of care needs, accounting for 10.7% of the total variance. These results highlight the relationships among care needs, symptom distress, and daily activity interference in post-chemotherapy lung-cancer patients. The present study provides a reference for nursing care to reduce the symptom distress, to enhance the performance of daily activities, and to meet the care needs of lung-cancer patients.

  11. Role of community pharmacists in asthma - Australian research highlighting pathways for future primary care models.

    Science.gov (United States)

    Saini, B; Krass, I; Smith, L; Bosnic-Anticevich, S; Armour, C

    2011-01-01

    Asthma is one of the most common chronic conditions affecting the Australian population. Amongst primary healthcare professionals, pharmacists are the most accessible and this places pharmacists in an excellent position to play a role in the management of asthma. Globally, trials of many community pharmacy-based asthma care models have provided evidence that pharmacist delivered interventions can improve clinical, humanistic and economic outcomes for asthma patients. In Australia, a decade of coordinated research efforts, in various aspects of asthma care, has culminated in the implementation trial of the Pharmacy Asthma Management Service (PAMS), a comprehensive disease management model.There has been research investigating asthma medication adherence through data mining, ways in which usual asthma care can be improved. Our research has focused on self-management education, inhaler technique interventions, spirometry trials, interprofessional models of care, and regional trials addressing the particular needs of rural communities. We have determined that inhaler technique education is a necessity and should be repeated if correct technique is to be maintained. We have identified this effectiveness of health promotion and health education, conducted within and outside the confines of the pharmacy, in public for a and settings such as schools, and established that this outreach role is particularly well received and increases the opportunity for people with asthma to engage in their asthma management.Our research has identified that asthma patients have needs which pharmacists delivering specialized models of care, can address. There is a lot of evidence for the effectiveness of asthma care by pharmacists, the future must involve integration of this role into primary care.

  12. Intercultural palliative care: do we need cultural competence?

    Science.gov (United States)

    Gunaratnam, Yasmin

    2007-10-01

    Recognition of the importance of 'cultural competence' is now central to health care policy and to nurse education and training across the international spectrum. Detailed engagement with models of cultural competence is comparatively recent in palliative care nursing. This article presents the findings from a development project on elders and carers from 'minority ethnic' groups, funded by the Department of Health, to increase awareness of palliative care and to improve understanding of the needs of these groups of service users. The article describes the experiences of nurses involved in the delivery of palliative care who were interviewed in focus groups as a part of the project. It draws attention to the complicated relationships between cultural knowledge and practice and to the non-rational and visceral dimensions of intercultural care. These aspects of nursing are marginalised in current approaches to cultural competence, which emphasise the rational acquisition and application of cultural knowledge and skills by practitioners. It is suggested that recognition of these marginalised experiences can contribute to the development of new approaches to intercultural nursing that are also more attuned to the ethos and values of palliative care.

  13. Training and career development in palliative care and end-of-life research: opportunities for development in the U.S.

    Science.gov (United States)

    Aziz, Noreen M; Grady, Patricia A; Curtis, J Randall

    2013-12-01

    There has been a dramatic increase in attention to the field of palliative care and end-of-life (PCEOL) research over the past 20 years. This increase is particularly notable in the development of palliative care clinical and educational programs. However, there remain important shortcomings in the evidence base to ensure access to and delivery of effective palliative care for patients with life-limiting illness and their families. Development of this evidence base will require that we train the next generation of researchers to focus on issues in PCEOL. The purpose of this article was to explore the current status of the recruitment, training, and retention of future investigators in PCEOL research in the U.S. and propose recommendations to move us forward. Some key contextual issues for developing and supporting this research workforce are articulated, along with timely and important research areas that will need to be addressed during research training and career development. We provide targeted key recommendations to facilitate the nurturing and support of the future research workforce that is needed to ensure the development and implementation of the science necessary for providing high-quality, evidence-based palliative care to all who need and desire it. Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

  14. Unfulfilled rehabilitation needs and dissatisfaction with care 12 months after a stroke

    DEFF Research Database (Denmark)

    Tistad, Malin; Tham, Kerstin; von Koch, Lena

    2012-01-01

    a questionnaire. Stroke severity, domains of the Stroke Impact Scale (SIS), the Sense of Coherence scale (SOC) and socio demographic factors were used as independent variables in four logistic regression analyses. RESULTS: Unfulfilled needs for rehabilitation at 12 months were predicted by strength (SIS) (odds......BACKGROUND: People who have suffered a stroke commonly report unfulfilled need for rehabilitation. Using a model of patient satisfaction, we examined characteristics in individuals that at 3 months after stroke predicted, or at 12 months were associated with unmet need for rehabilitation...... or dissatisfaction with health care services at 12 months after stroke. METHODS: The participants (n = 175) received care at the stroke units at the Karolinska University Hospital, Sweden. The dependent variables "unfulfilled needs for rehabilitation" and "dissatisfaction with care" were collected using...

  15. Mental health nurses' diabetes care skills - a training needs analysis.

    Science.gov (United States)

    Nash, Michael

    2009-05-28

    This article explores mental health nurses' diabetes training needs. A survey of inpatient and community mental health nurses was undertaken using a 16-item self-reporting questionnaire. Two hundred and twenty questionnaires were sent out and 138 returned, providing a response rate of 63%. Analysis shows that mental health nurses are currently involved in a range of diabetes care activities, however, their knowledge and skills may not be up to date. Mental health nurses also report the growing impact of diabetes care on their workload. Areas of identified training needs include taking blood glucose readings, giving dietary advice, liaison with diabetes nurse specialists and weight management. Mental health services and education providers need to consider developing specific training courses for mental health nurses.

  16. Increasing User Involvement in Health Care and Health Research Simultaneously

    DEFF Research Database (Denmark)

    Kaltoft, Mette Kjer; Nielsen, Jesper Bo; Salkeld, Glenn

    2014-01-01

    of the effects of different actions and interventions on their health, including those implying contact with health care services. We see their research as primarily carried out in order to make better decisions for themselves, but they can offer to contribute the results to the wider population. We see...... at the point of decision need, when motivation is highest. Some basic distinctions, such as those between science and non-science, research and practice, community and individual, and lay and professional become somewhat blurred and may need to be rethought in light of this approach....... to increased user involvement, though somewhat more aligned with the former. METHODS: Our online decision support tools, delivered directly to the person in the community and openly accessible, are to be seen as research resources. They will take the form of interactive decision aids for a variety of specific...

  17. Need or right: Sexual expression and intimacy in aged care.

    Science.gov (United States)

    Rowntree, Margaret R; Zufferey, Carole

    2015-12-01

    This paper explores how the residential aged care sector could engage with residents' sexual expression and intimacy. It is informed by a study of 19 aged care staff members and 23 community members, and initially designed on the principles of Appreciative Inquiry methodology. The data were collected through focus groups and interviews and analyzed using discourse analysis. We found that staff members mainly conceptualize sexual expression as a need to be met, while community members (current and prospective residents) understand it as a right to be exercised. We conclude that the way in which sexual expression is conceptualized has critical implications for the sector's engagement with this topic. A 'needs' discourse informs policies, procedures and practices that enable staff to meet residents' needs, while a 'rights' discourse shapes policies, practices and physical designs that improve residents' privacy and autonomy, shifting the balance of power towards them. The former approach fits with a nursing home medical model of care, and the latter with a social model of service provision and consumption. Copyright © 2015 Elsevier Inc. All rights reserved.

  18. Health care needs and use of health care services among newly arrived Syrian refugees: a cross-sectional study.

    Science.gov (United States)

    Oda, Anna; Tuck, Andrew; Agic, Branka; Hynie, Michaela; Roche, Brenda; McKenzie, Kwame

    2017-05-03

    Canada welcomed 33 723 Syrian refugees between November 2015 and November 2016. This paper reports the results of a rapid assessment of health care needs and use of health care services among newly arrived Syrian refugees in Toronto. A cross-sectional study was conducted in Toronto among Syrian refugees aged 18 years or more who had been in Canada for 12 months or less. Participants were recruited initially through distribution of flyers in hotels and through direct referrals and communication with community and settlement agency partners, and then through snowball sampling. We collected sociodemographic information and data on self-perceived physical health and mental health, unmet health care needs and use of health care services. A total of 400 Syrian refugees (221 women [55.2%] and 179 men [44.8%]) were enrolled. Of the 400, 209 (52.2%) were privately sponsored refugees, 177 (44.2%) were government-assisted refugees, and 12 (3.0%) were refugees under the Blended Visa Office-Referred Program. They reported high levels of self-perceived physical and mental health. Over 90% of the sample saw a doctor in their first year in Canada, and 79.8% had a family doctor they saw regularly. However, almost half (49.0%) of the respondents reported unmet health care needs, with the 3 most common reasons reported being long wait times, costs associated with services and lack of time to seek health care services. Many factors may explain our respondents' high levels of self-perceived physical and mental health during the first year of resettlement, including initial resettlement support and eligibility for health care under the Interim Federal Health Program. However, newly arrived Syrian refugees report unmet health care needs, which necessitates more comprehensive care and management beyond the initial resettlement support. Copyright 2017, Joule Inc. or its licensors.

  19. Indian Psychiatric Society multicentric study on assessment of health-care needs of patients with severe mental illnesses as perceived by their family caregivers and health-care providers

    OpenAIRE

    Grover, Sandeep; Avasthi, Ajit; Shah, Sandip; Lakdawala, Bhavesh; Chakraborty, Kaustav; Nebhinani, Naresh; Kallivayalil, Roy A; Dalal, Pranob K.; Sinha, Vishal; Khairkar, Praveen; Mukerjee, Divya G.; Thara, R.; Behere, Prakash; Chauhan, Nidhi; Thirunavukarasu, M.

    2015-01-01

    Aim: To study the health-care needs of the patients with severe mental disorders as perceived by their family caregivers and the treating psychiatrists. Materials and Methods: Caregivers of patients with severe mental disorders and their treating psychiatrists were assessed using Camberwell Assessment of Need-Research Version (CAN-R) scale and indigenously designed Supplementary Assessment of Needs Scale (SNAS). Results: The study included 1494 patients recruited from 15 centers. The mean nee...

  20. What do stakeholders need to implement shared decision making in routine cancer care? A qualitative needs assessment.

    Science.gov (United States)

    Müller, Evamaria; Hahlweg, Pola; Scholl, Isabelle

    2016-12-01

    Shared decision making (SDM) is particularly relevant in oncology, where complex treatment options with varying side effects may lead to meaningful changes in the patient's quality of life. For several years, health policies have called for the implementation of SDM, but SDM remains poorly implemented in routine clinical practice. Implementation science has highlighted the importance of assessing stakeholders' needs to inform the development of implementation programs. Thus, the aim of the present study was to assess different stakeholders' needs regarding the implementation of SDM in routine care. A qualitative study using focus groups and interviews was conducted. Focus groups were carried out with junior physicians, senior physicians, nurses and other healthcare providers (HPCs) (e.g. psycho-oncologists, physiotherapists), patients and family members. Head physicians as well as other HPCs in management positions were interviewed. Audiotapes of focus groups and interviews were transcribed verbatim and analyzed using content analysis. Six focus groups with a total of n = 42 stakeholders as well as n = 17 interviews were conducted. Focus groups and interviews revealed five main categories of needs to be fulfilled in order to achieve a better implementation of SDM in routine cancer care: 1) changes in communication, 2) involvement of other parties, 3) a trustful patient-physician relationship, 4) culture change and 5) structural changes. Stakeholders discussed four clusters of intervention strategies that could foster the implementation of SDM in routine cancer care: 1) clinician-mediated interventions, 2) patient-mediated interventions, 3) provision of patient information material and 4) the establishment of a patient advocate. Study results show that stakeholders voiced a diversity of needs to foster implementation of SDM in routine cancer care, of which some can be directly addressed by intervention strategies. Present results can be used to develop an

  1. Emerging Methodologies in Pediatric Palliative Care Research: Six Case Studies

    Directory of Open Access Journals (Sweden)

    Katherine E. Nelson

    2018-02-01

    Full Text Available Given the broad focus of pediatric palliative care (PPC on the physical, emotional, and spiritual needs of children with potentially life-limiting illnesses and their families, PPC research requires creative methodological approaches. This manuscript, written by experienced PPC researchers, describes issues encountered in our own areas of research and the novel methods we have identified to target them. Specifically, we discuss potential approaches to: assessing symptoms among nonverbal children, evaluating medical interventions, identifying and treating problems related to polypharmacy, addressing missing data in longitudinal studies, evaluating longer-term efficacy of PPC interventions, and monitoring for inequities in PPC service delivery.

  2. Emerging Methodologies in Pediatric Palliative Care Research: Six Case Studies

    Science.gov (United States)

    Nelson, Katherine E.; Gerhardt, Cynthia A.; Rosenberg, Abby R.; Widger, Kimberley; Faerber, Jennifer A.; Feudtner, Chris

    2018-01-01

    Given the broad focus of pediatric palliative care (PPC) on the physical, emotional, and spiritual needs of children with potentially life-limiting illnesses and their families, PPC research requires creative methodological approaches. This manuscript, written by experienced PPC researchers, describes issues encountered in our own areas of research and the novel methods we have identified to target them. Specifically, we discuss potential approaches to: assessing symptoms among nonverbal children, evaluating medical interventions, identifying and treating problems related to polypharmacy, addressing missing data in longitudinal studies, evaluating longer-term efficacy of PPC interventions, and monitoring for inequities in PPC service delivery. PMID:29495384

  3. Accuracy of the Distress Thermometer for home care patients with palliative care needs in Germany.

    Science.gov (United States)

    Wüller, Johannes; Küttner, Stefanie; Foldenauer, Ann Christina; Rolke, Roman; Pastrana, Tania

    2017-06-01

    Our aim was to examine the accuracy of the German version of the Distress Thermometer (DT) compared with the Hospital Anxiety and Depression Scale (HADS) in patients with palliative care needs living at home. Ours was a 15-month cross-sectional study beginning in September of 2013 in Germany with consecutive patients cared for by a palliative home care service. The survey was implemented during the initial visit by a home care team. Patients were excluded if they were under 18 years of age, mentally or physically unable to complete the assessment questionnaires as judged by their healthcare worker, or unable to understand the German language. During the first encounter, the DT and HADS were applied, and sociodemographic and medical data were collected. A total of 89 persons completed both the HADS and DT questionnaires (response rate = 59.7%; mean age = 67 years; female = 55.1%; married = 65.2%; living home with relatives = 73.0%; oncological condition = 92.1%; Karnofsky Performance Scale [KPS] score: 0-40 = 30.3%, 50-70 = 57.3%, >80 = 6.7%). The mean DT score was 6.3 (±2.3), with 84.3% of participants scoring above the DT cutoff (≥4). The mean HADStotal score was 17.9 (±7.8), where 64% of participants had a total HADS score (HADStotal) ≥15, 51.7% reported anxiety (HADSanxiety ≥ 8), and 73% reported depression (HADSdepression ≥ 8). Using the HADS as a gold standard, a DT cutoff score ≥5 was optimal for identifying severe distress in patients with palliative care needs, with a sensitivity of 93.0%, a specificity of 34.4%, a positive predictive value (PPV) of 73.3%, and likelihood ratios LR+ = 1.42 (home with palliative care needs in order to offer adequate support.

  4. The Role of Nurse Leaders in Advancing Carer Communication Needs across Transitions of Care: A Call to Action.

    Science.gov (United States)

    Udod, Sonia A; Lobchuk, Michelle

    2017-01-01

    This paper focuses on the central role of senior nurse leaders in advancing organizational resources and support for communication between healthcare providers and carers that influences patient and carer outcomes during the transition from hospital to the community. A Think Tank (Lobchuk 2012) funded by the Canadian Institutes of Health Research (CIHR) gathered interdisciplinary and intersectoral stakeholders from local, national and international levels to develop a Family Carer Communication Research Collaboration. Workshop stakeholders addressed critical challenges in meeting communication needs of carers as partners with clinicians in promoting safe care for the elderly, chronically or seriously ill or disabled individuals in the community. Key priority areas identified the need to uncover nurse leader perspectives at the system, nurse leader, healthcare provider and patient levels where communication with carers occurs. The overarching outcome from the workshop focuses on the need for nurse leaders to advocate for patients and their families in meeting carer communication needs. The authors' "call to action" requires commitment and investment from nurse leaders in the critical juncture of healthcare delivery to strengthen communication between healthcare providers and carers that influence patient and carer outcomes in seamless transitions of care.

  5. The palliative care needs of patients with stage 3 and 4 HIV infection

    Directory of Open Access Journals (Sweden)

    C Jameson

    2008-01-01

    Conclusions : Medical problems with poor symptom control were the commonest problems, followed by socioeconomic issues related to no income, poor living conditions and fears for the future of their children. Spiritual and psychological issues were surprisingly less of a problem possibly because the immediacy and severity of the demands of day-to-day survival. As a result of the needs identified among these patients, it became apparent that a palliative care ward catering to these needs was needed. The guiding principles in the development of this ward were the need for privacy, for a teamwork approach and for meticulous medical care, all of which underpin good palliative care.

  6. A patient-centered research agenda for the care of the acutely ill older patient.

    Science.gov (United States)

    Wald, Heidi L; Leykum, Luci K; Mattison, Melissa L P; Vasilevskis, Eduard E; Meltzer, David O

    2015-05-01

    Hospitalists and others acute-care providers are limited by gaps in evidence addressing the needs of the acutely ill older adult population. The Society of Hospital Medicine sponsored the Acute Care of Older Patients Priority Setting Partnership to develop a research agenda focused on bridging this gap. Informed by the Patient-Centered Outcomes Research Institute framework for identification and prioritization of research areas, we adapted a methodology developed by the James Lind Alliance to engage diverse stakeholders in the research agenda setting process. The work of the Partnership proceeded through 4 steps: convening, consulting, collating, and prioritizing. First, the steering committee convened a partnership of 18 stakeholder organizations in May 2013. Next, stakeholder organizations surveyed members to identify important unanswered questions in the acute care of older persons, receiving 1299 responses from 580 individuals. Finally, an extensive and structured process of collation and prioritization resulted in a final list of 10 research questions in the following areas: advanced-care planning, care transitions, delirium, dementia, depression, medications, models of care, physical function, surgery, and training. With the changing demographics of the hospitalized population, a workforce with limited geriatrics training, and gaps in evidence to inform clinical decision making for acutely ill older patients, the identified research questions deserve the highest priority in directing future research efforts to improve care for the older hospitalized patient and enrich training. © 2015 Society of Hospital Medicine.

  7. Enhancing the contribution of research to health care policy-making: a case study of the Dutch Health Care Performance Report.

    Science.gov (United States)

    Hegger, Ingrid; Marks, Lisanne K; Janssen, Susan W J; Schuit, Albertine J; van Oers, Hans A M

    2016-01-01

    The Dutch Health Care Performance Report, issued by the National Institute of Public Health and the Environment, aims to monitor health care performance in The Netherlands. Both the National Institute and the Ministry of Health wish to increase the contribution of the Report to health care policy-making. Our aim was to identify ways to achieve that. We used contribution mapping as a theoretical framework that recognizes alignment of research as crucial to managing contributions to policy-making. To investigate which areas need alignment efforts by researchers and/or policy-makers, we interviewed National Institute researchers and policy-makers from the Ministry of Health and assessed the process for developing the 2010 Report. We identified six areas where alignment is specifically relevant for enhancing the contributions of future versions of the Dutch Health Care Performance Report: well-balanced information for different ministerial directorates; backstage work; double role actors; reports of other knowledge institutes; data collection/generation and presentation forms. The contribution of health care performance reporting to policy-making is complex and requires continuous alignment efforts between researchers and policy-makers. These efforts should form an inseparable part of health care performance reporting and although this demands considerable resources, it is worth considering since it may pay back in better contributions to policy-making. © The Author(s) 2015.

  8. A needs analysis for a non-abusive intervention programme in the School of Health Care Sciences at the University of Pretoria

    OpenAIRE

    LO Fouché; R du Toit

    2006-01-01

    Due to feedback from students, student abuse during fieldwork, was brought to the attention of the researchers. The study aimed to determine whether a need for a nonabusive intervention programme (NIP) existed amongst the School of Health Care Science students at the University of Pretoria. All students enrolled at the School of Health Care Sciences completed a questionnaire. An overwhelming response indicated that the majority of students (95.85%) have a need for a non-abusive intervention p...

  9. Primary care for refugees and newly arrived migrants in Europe: a qualitative study on health needs, barriers and wishes.

    Science.gov (United States)

    van Loenen, Tessa; van den Muijsenbergh, Maria; Hofmeester, Marrigje; Dowrick, Christopher; van Ginneken, Nadja; Mechili, Enkeleint Aggelos; Angelaki, Agapi; Ajdukovic, Dean; Bakic, Helena; Pavlic, Danica Rotar; Zelko, Erika; Hoffmann, Kathryn; Jirovsky, Elena; Mayrhuber, Elisabeth Sophie; Dückers, Michel; Mooren, Trudy; Gouweloos-Trines, Juul; Kolozsvári, László; Rurik, Imre; Lionis, Christos

    2018-02-01

    In order to provide effective primary care for refugees and to develop interventions tailored to them, we must know their needs. Little is known of the health needs and experiences of recently arrived refugees and other migrants throughout their journey through Europe. We aimed to gain insight into their health needs, barriers in access and wishes regarding primary health care. In the spring of 2016, we conducted a qualitative, comparative case study in seven EU countries in a centre of first arrival, two transit centres, two intermediate-stay centres and two longer-stay centres using a Participatory Learning and Action research methodology. A total of 98 refugees and 25 healthcare workers participated in 43 sessions. Transcripts and sessions reports were coded and thematically analyzed by local researchers using the same format at all sites; data were synthesized and further analyzed by two other researchers independently. The main health problems of the participants related to war and to their harsh journey like common infections and psychological distress. They encountered important barriers in accessing healthcare: time pressure, linguistic and cultural differences and lack of continuity of care. They wish for compassionate, culturally sensitive healthcare workers and for more information on procedures and health promotion. Health of refugees on the move in Europe is jeopardized by their bad living circumstances and barriers in access to healthcare. To address their needs, healthcare workers have to be trained in providing integrated, compassionate and cultural competent healthcare. © The Author 2017. Published by Oxford University Press on behalf of the European Public Health Association. All rights reserved.

  10. [Educational needs assessment on research ethics among nursing researchers].

    Science.gov (United States)

    Jeong, Ihn Sook; Gu, Mee Ock; Kim, Keum Soon; Lee, Kwang Ja; Yang, Soo

    2010-08-01

    This study aimed to investigate the educational needs of research ethics among nursing researchers. Convenience sample of 161 nursing professors and 262 master or doctoral nursing students participated in the study. Data was collected with self-reported questionnaire from June to August 2009, and analyzed with descriptive statistics using SPSS WIN (version 14.0). Among 161 nursing professors, about 31.7% has educated nursing ethics in the postgraduate course. The most common course was nursing research or methodology (62.7%), and median education time was 2 hr. Areas that showed difficulty in understanding was the conflict of interest and plagiarism for professors and falsification and fabrication for graduate students. Average knowledge on the research ethics was 75.4 points for professors and 61.6 points for students based on the 100 points. Educational needs of research ethics among nursing professors and students in the postgraduate course was high. We recommend both basic and advanced research ethics educational programs for the nursing researchers. The basic course should be at least 6 hr and include various cases and something to discuss.

  11. Exploring integration of care for children living with complex care needs across the European union and European economic area

    DEFF Research Database (Denmark)

    Brenner, Maria; O’Shea, Miriam; Larkin, Philip J.

    2017-01-01

    Introduction: The aim of this paper is to report on the development of surveys to explore integration of care for children living with complex care needs across the European Union (EU) and European Economic Area (EEA). Theory and methods: Each survey consists of a vignette and questions adapted...... from the Standards for Systems of Care for Children and Youth with Special Health Care Needs and the Eurobarometer Survey. A Country Agent in each country, a local expert in child health services, will obtain data from indigenous sources. Results: We identified ‘in-principle’ complex problems...

  12. Cancer survivorship care-planning: Practice, research, and policy implications for social work.

    Science.gov (United States)

    Wagner, Richard W; Pritzker, Suzanne

    2016-01-01

    Increasing numbers of cancer survivors are living longer than 5 years from their diagnosis date. This has resulted in a growing population of cancer survivors, expected to reach 19 million by 2024. Survivors frequently experience late effects caused by cancer and its treatment, reducing survivors' quality of life in multiple domains. Survivorship care-plans may aid the many physical, psychosocial, and financial needs that emerge posttreatment. However, the lack of reimbursement mechanisms, the limited amount of effectiveness research, and minimal guidelines for content and delivery are barriers to the widespread provision of survivorship care-plans. Challenges and opportunities for social work practice, research, and policy are identified and discussed.

  13. Which patients need critical care intervention after total joint arthroplasty? : a prospective study of factors associated with the need for intensive care following surgery.

    Science.gov (United States)

    Courtney, P M; Melnic, C M; Gutsche, J; Hume, E L; Lee, G-C

    2015-11-01

    Older patients with multiple medical co-morbidities are increasingly being offered and undergoing total joint arthroplasty (TJA). These patients are more likely to require intensive care support, following surgery. We prospectively evaluated the need for intensive care admission and intervention in a consecutive series of 738 patients undergoing elective hip and knee arthroplasty procedures. The mean age was 60.6 years (18 to 91; 440 women, 298 men. Risk factors, correlating with the need for critical care intervention, according to published guidelines, were analysed to identify high-risk patients who would benefit from post-operative critical care monitoring. A total of 50 patients (6.7%) in our series required critical care level interventions during their hospital stay. Six independent multivariate clinical predictors were identified (p 1000 mL (OR 17.36, 95% CI 5.36 to 56.19), chronic obstructive pulmonary disease (13.90, 95% CI 4.78 to 40.36), intra-operative use of vasopressors (OR 8.10, 95% CI 3.23 to 20.27), revision hip arthroplasty (OR 2.71, 95% CI 1.04 to 7.04) and body mass index > 35 kg/m(2) (OR 2.70, 95% CI 123 to 5.94). The model was then validated against an independent, previously published data set of 1594 consecutive patients. The use of this risk stratification model can be helpful in predicting which high-risk patients would benefit from a higher level of monitoring and care after elective TJA and aid hospitals in allocating precious critical care resources. ©2015 The British Editorial Society of Bone & Joint Surgery.

  14. Working conditions and parents' ability to care for children's preventive health needs.

    Science.gov (United States)

    Earle, Alison; Heymann, Jody

    2014-04-01

    To determine whether workplace flexibility policies influence parents' ability to meet their children's preventive primary health care needs. Study sample included 917 employed adults with at least 1 child younger than 18 years in their household from a nationally representative survey of US adults. Multivariate logistic regression analyses of factors influencing parental ability to meet their children's preventive primary health care needs were conducted. Analyses assessed the effect of having access to schedule flexibility, a supervisor who is accommodating about work adjustments when family issues arise, and the ability to make personal calls without consequences on the odds of a parents' being unable to meet their child's preventive health care needs. Being able to make a personal phone call at work was associated with a 56% (P flexibility at work could make a substantial difference in parents' ability to obtain preventive care for their children.

  15. Introducing a model incorporating early integration of specialist palliative care: A qualitative research study of staff's perspectives.

    Science.gov (United States)

    Michael, Natasha; O'Callaghan, Clare; Brooker, Joanne E; Walker, Helen; Hiscock, Richard; Phillips, David

    2016-03-01

    Palliative care has evolved to encompass early integration, with evaluation of patient and organisational outcomes. However, little is known of staff's experiences and adaptations when change occurs within palliative care services. To explore staff experiences of a transition from a service predominantly focused on end-of-life care to a specialist service encompassing early integration. Qualitative research incorporating interviews, focus groups and anonymous semi-structured questionnaires. Data were analysed using a comparative approach. Service activity data were also aggregated. A total of 32 medical, nursing, allied health and administrative staff serving a 22-bed palliative care unit and community palliative service, within a large health service. Patients cared for within the new model were significantly more likely to be discharged home (7.9% increase, p = 0.003) and less likely to die in the inpatient unit (10.4% decrease, p management was considered valuable, nurses particularly found additional skill expectations challenging, and perceived patients' acute care needs as detracting from emotional and end-of-life care demands. Staff views varied on whether they regarded the new model's faster-paced work-life as consistent with fundamental palliative care principles. Less certainty about care goals, needing to prioritise care tasks, reduced shared support rituals and other losses could intensify stress, leading staff to develop personalised coping strategies. Services introducing and researching innovative models of palliative care need to ensure adequate preparation, maintenance of holistic care principles in faster work-paced contexts and assist staff dealing with demands associated with caring for patients at different stages of illness trajectories. © The Author(s) 2015.

  16. Psychosocial Distress of Patients with Psoriasis: Protocol for an Assessment of Care Needs and the Development of a Supportive Intervention.

    Science.gov (United States)

    Zill, Jördis Maria; Dirmaier, Jörg; Augustin, Matthias; Dwinger, Sarah; Christalle, Eva; Härter, Martin; Mrowietz, Ulrich

    2018-02-07

    Psoriasis is a chronic inflammatory disease that is often associated with a number of somatic and mental comorbidity. Patients with psoriasis show an increased risk of depression and (social) anxiety. The aims of this study are 1) to explore the psychosocial distress of patients with psoriasis and to assess their care needs; and 2) to develop a supportive intervention based on the prior results. A multi-stage design with four phases combining quantitative and qualitative methodology will be used and conducted in two centers. 1) A scoping review and focus groups will be used to design a questionnaire to assess the psychosocial distress and care needs of the patients. 2) The questionnaire developed in phase 1 will be used in a cross-sectional survey to assess the extent of psychosocial distress and supportive care needs in 400 patients with psoriasis. 3) A systematic review and meta-analysis will be conducted to identify psychosocial and psychoeducational interventions for patients with psoriasis and to describe their effectiveness. 4) Based on the results of the phases 2 and 3 a manualized supportive intervention will be developed and the feasibility and acceptance of the intervention will be assessed. Currently, phase 1 of the project has been completed and the recruitment for phase 2 has been started. The systematic review and meta-analysis of phase 3 are conducted simultaneously to phase 2 and results are expected soon. Phase 4 has not been started yet. The expected results of this study will show the extent of psychosocial distress of patients with psoriasis in Germany and supplement previous research with findings about the supportive care needs of this patient group. Moreover, the developed intervention will help to address the psychosocial support needs of patients with psoriasis. Research shows that psychosocial support is strongly needed. ©Jördis Maria Zill, Jörg Dirmaier, Matthias Augustin, Sarah Dwinger, Eva Christalle, Martin Härter, Ulrich Mrowietz

  17. Emancipatory practices of nurses in primary health care: the home visit as an instrument of health needs assessment

    Directory of Open Access Journals (Sweden)

    Celia Maria Sivalli Campos

    Full Text Available Objective Identify nurses’ emancipatory practices in primary care, to contribute to the improvement of health care. Method A case study type social research of qualitative nature, in which nurses of a primary health care service unit in São Paulo were interviewed. Results The home visit was identified as a nursing practice possible to be expanded in order to identify social determinants of health, triggering emancipatory practices in the service. This expansion occurred because the design of health care labour intended by the service team changed its focus from the traditional object of health services, the disease. Conclusion First, it is advocated that social policies lead projects with the purpose of improving health needs. On the other hand, the daily labour needs to provide opportunities for reflection and discussion of healthcare projects, leading workers to propose labour-processes targeted to both the social determinants of health and people’s illness.

  18. Emancipatory practices of nurses in primary health care: the home visit as an instrument of health needs assessment

    Directory of Open Access Journals (Sweden)

    Celia Maria Sivalli Campos

    2014-08-01

    Full Text Available Objective Identify nurses’ emancipatory practices in primary care, to contribute to the improvement of health care. Method A case study type social research of qualitative nature, in which nurses of a primary health care service unit in São Paulo were interviewed. Results The home visit was identified as a nursing practice possible to be expanded in order to identify social determinants of health, triggering emancipatory practices in the service. This expansion occurred because the design of health care labour intended by the service team changed its focus from the traditional object of health services, the disease. Conclusion First, it is advocated that social policies lead projects with the purpose of improving health needs. On the other hand, the daily labour needs to provide opportunities for reflection and discussion of healthcare projects, leading workers to propose labour-processes targeted to both the social determinants of health and people’s illness.

  19. Barriers and facilitators to recruitment of physicians and practices for primary care health services research at one centre.

    Science.gov (United States)

    Johnston, Sharon; Liddy, Clare; Hogg, William; Donskov, Melissa; Russell, Grant; Gyorfi-Dyke, Elizabeth

    2010-12-13

    While some research has been conducted examining recruitment methods to engage physicians and practices in primary care research, further research is needed on recruitment methodology as it remains a recurrent challenge and plays a crucial role in primary care research. This paper reviews recruitment strategies, common challenges, and innovative practices from five recent primary care health services research studies in Ontario, Canada. We used mixed qualitative and quantitative methods to gather data from investigators and/or project staff from five research teams. Team members were interviewed and asked to fill out a brief survey on recruitment methods, results, and challenges encountered during a recent or ongoing project involving primary care practices or physicians. Data analysis included qualitative analysis of interview notes and descriptive statistics generated for each study. Recruitment rates varied markedly across the projects despite similar initial strategies. Common challenges and creative solutions were reported by many of the research teams, including building a sampling frame, developing front-office rapport, adapting recruitment strategies, promoting buy-in and interest in the research question, and training a staff recruiter. Investigators must continue to find effective ways of reaching and involving diverse and representative samples of primary care providers and practices by building personal connections with, and buy-in from, potential participants. Flexible recruitment strategies and an understanding of the needs and interests of potential participants may also facilitate recruitment.

  20. Exploring education and training needs in palliative care among family physicians in Mumbai: A qualitative study

    Directory of Open Access Journals (Sweden)

    Anuja Damani

    2018-01-01

    Full Text Available Context: Patients with chronic life-limiting conditions on palliative care (PC prefer to be treated at home. Medical care by family physicians (FPs reduces demand on costly and busy hospital facilities. Working of PC team in collaboration with FPs is thus helpful in home-based management of patients.Aims: This study aimed at exploring the extent of knowledge of FPs about PC and the need for additional training. Settings and Design: Semi-structured interviews were conducted with ten FPs from two suburbs of Mumbai, currently served by home care services of a tertiary cancer care center. Subjects and Methods: Data were digitally recorded, transcribed, and analyzed using exploratory analysis followed by content analysis to develop thematic codes.Results and Conclusions: FPs perceive PC as symptom control and psychological support helpful in managing patients with advanced life-limiting illnesses. Further training would help them in PC provision. Such training programs should preferably focus on symptom management and communication skills. There is a need for further research in designing a training module for FPs to get better understanding of the principles of PC.

  1. Disparities in unmet dental need and dental care received by pregnant women in Maryland.

    Science.gov (United States)

    Singhal, Astha; Chattopadhyay, Amit; Garcia, A Isabel; Adams, Amy B; Cheng, Diana

    2014-09-01

    To examine prenatal dental care needs, utilization and oral health counseling among Maryland women who delivered a live infant during 2001-2003 and identify the factors associated with having a dental visit and having an unmet dental need during pregnancy. Pregnancy Risk Assessment Monitoring System is an ongoing population based surveillance system that collects information of women's attitudes and experiences before, during, and shortly after pregnancy. Logistic regression was used to model dental visits and unmet dental need using predictor variables for Maryland 2001-2003 births. Less than half of all women reported having a dental visit and receiving oral health advice during pregnancy. Twenty-five percent of women reported a need for dental care, of which 33 % did not receive dental care despite their perceived need. Multivariate modeling revealed that racial minorities, women who were not married and those with annual income dental visit. Women who were not married, had low annual income, were older than 40 years of age, had an unintended pregnancy and received prenatal care later than desired were most likely to have an unmet dental need during pregnancy. Despite reported needs and existing recommendations to include oral health as a component of prenatal care, less than half of pregnant women have a dental visit during their pregnancy. One-third of women with a dental problem did not have a dental visit highlighting the unmet need for dental care during pregnancy.

  2. [Assessment of geriatric patients' care needs based on sosia classification: the reality of the lombardy region in nursing home.

    Science.gov (United States)

    Vanalli, Mariangela

    2016-11-01

    The increased demand to care that originates from demographic changes called in Italy a rapid development in Nursing Home with particular emergency the problem of programme the welfare response. It is essential the development of a classification system able to describe the stratification of the case mix on the basis of the care requirements, allowing a remuneration in function of the complexity care. Since 2003, the Lombardy region has introduced a case-mix reimbursement system for nursing homes based on the SOSIA form which classifies residents into eight classes of frailty. In the present study the agreement between SOSIA classification and other well documented instruments, including Barthel Index, Mini-Mental State Examination on the basis of three indicators (mobility, cognition, comorbidity) is evaluated in eight classes of frailty. However, it is not any research project was published in order to assess the agreement between SOSIA classification and other measuring instruments. Although various methods exist by which researchers have attempted to measure the need for nursing care, there is no nationally accepted system for determining the total amount of registered nursing resources required by residents in long-term care. The aim of this study was to evaluate the correlation between SOSIA and filing systems widely used, such as the degree of Barthel disability rating scale, the Mini-Mental State Examination to offer care appropriate for the case-mix. Only the higher complexity care has classified in the first two classes, while the remaining levels has categorized in the lowest paid. Misclassification therefore induces an underestimation of the real care needs and, consequently, inadequate remuneration.

  3. Transgender Veterans' Satisfaction With Care and Unmet Health Needs.

    Science.gov (United States)

    Lehavot, Keren; Katon, Jodie G; Simpson, Tracy L; Shipherd, Jillian C

    2017-09-01

    Transgender individuals are overrepresented among Veterans. However, little is known regarding their satisfaction with Veterans Administration (VA) care and unmet health needs. This study examined transgender Veterans' satisfaction with VA medical and mental health care, prevalence of delaying care, and correlates of these outcomes. We used data from transgender Veterans collected in 2014 through an online, national survey. In total, 298 transgender Veterans living in the United States. We assessed patient satisfaction with VA medical and mental health care and self-reported delays in seeking medical and mental health care in the past year. Potential correlates associated with these 4 outcomes included demographic, health, and health care variables. Over half of the sample used VA (56%) since their military discharge. Among transgender Veterans who had used VA, 79% were satisfied with medical care and 69% with mental health care. Lower income was associated with dissatisfaction with VA medical care, and being a transgender man was associated with dissatisfaction with VA mental health care. A substantial proportion reported delays in seeking medical (46%) or mental (38%) health care in the past year (not specific to VA). Screening positive for depression and/or posttraumatic stress disorder was associated with delays in seeking both types of care. Although the majority of transgender Veterans are satisfied with VA health care, certain subgroups are less likely to be satisfied with care. Further, many report delaying accessing care, particularly those with depression and/or posttraumatic stress disorder symptoms. Adapting health care settings to better engage these vulnerable Veterans may be necessary.

  4. A pan-European survey of research in end-of-life cancer care.

    Science.gov (United States)

    Sigurdardottir, Katrin Ruth; Haugen, Dagny Faksvåg; Bausewein, Claudia; Higginson, Irene J; Harding, Richard; Rosland, Jan Henrik; Kaasa, Stein

    2012-01-01

    .D. students. There is a lack of a common strategy and coordination in EOL cancer care research and a great need for international collaboration.

  5. Needs Assessment for Research Use of High-Throughput Sequencing at a Large Academic Medical Center.

    Directory of Open Access Journals (Sweden)

    Albert Geskin

    Full Text Available Next Generation Sequencing (NGS methods are driving profound changes in biomedical research, with a growing impact on patient care. Many academic medical centers are evaluating potential models to prepare for the rapid increase in NGS information needs. This study sought to investigate (1 how and where sequencing data is generated and analyzed, (2 research objectives and goals for NGS, (3 workforce capacity and unmet needs, (4 storage capacity and unmet needs, (5 available and anticipated funding resources, and (6 future challenges. As a precursor to informed decision making at our institution, we undertook a systematic needs assessment of investigators using survey methods. We recruited 331 investigators from over 60 departments and divisions at the University of Pittsburgh Schools of Health Sciences and had 140 respondents, or a 42% response rate. Results suggest that both sequencing and analysis bottlenecks currently exist. Significant educational needs were identified, including both investigator-focused needs, such as selection of NGS methods suitable for specific research objectives, and program-focused needs, such as support for training an analytic workforce. The absence of centralized infrastructure was identified as an important institutional gap. Key principles for organizations managing this change were formulated based on the survey responses. This needs assessment provides an in-depth case study which may be useful to other academic medical centers as they identify and plan for future needs.

  6. Improving Care And Research Electronic Data Trust Antwerp (iCAREdata): a research database of linked data on out-of-hours primary care.

    Science.gov (United States)

    Colliers, Annelies; Bartholomeeusen, Stefaan; Remmen, Roy; Coenen, Samuel; Michiels, Barbara; Bastiaens, Hilde; Van Royen, Paul; Verhoeven, Veronique; Holmgren, Philip; De Ruyck, Bernard; Philips, Hilde

    2016-05-04

    Primary out-of-hours care is developing throughout Europe. High-quality databases with linked data from primary health services can help to improve research and future health services. In 2014, a central clinical research database infrastructure was established (iCAREdata: Improving Care And Research Electronic Data Trust Antwerp, www.icaredata.eu ) for primary and interdisciplinary health care at the University of Antwerp, linking data from General Practice Cooperatives, Emergency Departments and Pharmacies during out-of-hours care. Medical data are pseudonymised using the services of a Trusted Third Party, which encodes private information about patients and physicians before data is sent to iCAREdata. iCAREdata provides many new research opportunities in the fields of clinical epidemiology, health care management and quality of care. A key aspect will be to ensure the quality of data registration by all health care providers. This article describes the establishment of a research database and the possibilities of linking data from different primary out-of-hours care providers, with the potential to help to improve research and the quality of health care services.

  7. Social care and support needs of community-dwelling people with dementia and concurrent visual impairment.

    Science.gov (United States)

    Nyman, Samuel Robert; Innes, Anthea; Heward, Michelle

    2017-09-01

    This study explored the social care and support needs of people with dementia and visual impairment, and the barriers and facilitators for meeting these needs. Twenty-six semi-structured interviews were conducted: 21 joint and 5 individual interviews with the person with dementia and visual impairment (n=4) or their family/paid carer (n=1). Interviews were analysed thematically. Three themes are presented. (1) Social care needs: having dementia can reduce an individual's ability to cope with their visual impairment, and lead to increased dependency and reduced daily stimulation. (2) Barriers to using technology to meet social care needs: difficulties were reported with learning to use unfamiliar technology and the cost of visual impairment aids, and for some, the presence of dementia made visual impairment aids unusable and vice versa. (3) Familiarity as a facilitator for meeting social care needs: living at home or taking furnishings and ornaments into a new home facilitated independence, and continuity of paid carers/volunteers facilitated the caring relationship between the individual and staff/volunteer. Care workers will better serve older people if they are aware of the social care and support needs that arise from having both dementia and visual impairment.

  8. The attitudes of health care staff to information technology: a comprehensive review of the research literature.

    Science.gov (United States)

    Ward, Rod; Stevens, Christine; Brentnall, Philip; Briddon, Jason

    2008-06-01

    What does the publicly available literature tell us about the attitudes of health care staff to the development of information technology in practice, including the factors which influence them and the factors which may be used to change these attitudes? Twelve databases were searched for literature published between 2000 and 2005 that identified research related to information technology (IT), health professionals and attitude. English language studies were included which described primary research relating to the attitudes of one or more health care staff groups towards IT. Letters, personal viewpoints, reflections and opinion pieces were not included. Complex factors contribute to the formation of attitudes towards IT. Many of the issues identified were around the flexibility of the systems and whether they were 'fit for purpose', along with the confidence and experience of the IT users. The literature suggests that attitudes of practitioners are a significant factor in the acceptance and efficiency of use of IT in practice. The literature also suggested that education and training was a factor for encouraging the use of IT systems. A range of key issues, such as the need for flexibility and usability, appropriate education and training and the need for the software to be 'fit for purpose', showed that organizations need to plan carefully when proposing the introduction of IT-based systems into work practices. The studies reviewed did suggest that attitudes of health care professionals can be a significant factor in the acceptance and efficiency of use of IT in practice. Further qualitative and quantitative research is needed into the approaches that have most effect on the attitudes of health care staff towards IT.

  9. Research on Clinical Preventive Services for Adolescents and Young Adults: Where Are We and Where Do We Need to Go?

    Science.gov (United States)

    Harris, Sion K; Aalsma, Matthew C; Weitzman, Elissa R; Garcia-Huidobro, Diego; Wong, Charlene; Hadland, Scott E; Santelli, John; Park, M Jane; Ozer, Elizabeth M

    2017-03-01

    We reviewed research regarding system- and visit-level strategies to enhance clinical preventive service delivery and quality for adolescents and young adults. Despite professional consensus on recommended services for adolescents, a strong evidence base for services for young adults, and improved financial access to services with the Affordable Care Act's provisions, receipt of preventive services remains suboptimal. Further research that builds off successful models of linking traditional and community clinics is needed to improve access to care for all youth. To optimize the clinical encounter, promising clinician-focused strategies to improve delivery of preventive services include screening and decision support tools, particularly when integrated into electronic medical record systems and supported by training and feedback. Although results have been mixed, interventions have moved beyond increasing service delivery to demonstrating behavior change. Research on emerging technology-such as gaming platforms, mobile phone applications, and wearable devices-suggests opportunities to expand clinicians' reach; however, existing research is based on limited clinical settings and populations. Improved monitoring systems and further research are needed to examine preventive services facilitators and ensure that interventions are effective across the range of clinical settings where youth receive preventive care, across multiple populations, including young adults, and for more vulnerable populations with less access to quality care. Copyright © 2016 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.

  10. Interdisciplinary research framework for identifying research needs. Case: bioenergy-biodiversity interlinkages

    Energy Technology Data Exchange (ETDEWEB)

    Furman, E.; Peltola, T.; Varjopuro, R. (eds.)

    2009-05-15

    A loss of biological diversity continues in spite of the existing, and in some respects, rather elaborate and heavy attempts at management and protection. It has been argued that one of the reasons for the lack of success is the unmet and challenging knowledge needs. Meeting the needs requires integration of various sciences and expertise, since attempts to manage biodiversity gives rise also to many emerging, complex and political questions. Integration of the disciplines needs practices that are able to overcome practical, institutional and cultural obstacles. ALTER-Net, a European network for research on biological diversity under the 6th framework programme, has aimed to undertake further interdisciplinary research that will feed into the addressing of societal needs. This report describes how the integration of research progressed and succeeded during the five year life span of ALTER-Net. Initially the integration between disciplines was given as an overall goal, which did result in determining concrete practices of integration between the sciences, teams and partner organisations. The analysis shows that in spite of complications an interdisciplinary research approach can evolve in large research networks, but this can happen also through unanticipated channels. A large network allows room for several parallel processes of integration. The report depicts the development of and choices leading to the development of an interdisciplinary research framework for ALTER-Net, the IDR framework. The framework presents a method to enhance interdisciplinary syntheses of emerging policy-relevant issues and to further develop the identification of relevant topics as interdisciplinary research projects. The IDR framework was tested by focusing on the interlinkages between the bioenergy question and biodiversity. The report consists of a synthesis of pressing research needs pertaining to that topic. The report presents how the IDR framework was constructed using a method

  11. Distress, problems and supportive care needs of patients treated with auto- or allo-SCT

    NARCIS (Netherlands)

    Annemarie Braamse; prof Berno van Meijel; O. Visser; P.C. Huijgens; A.T.F. Beekman; J. Dekker

    2013-01-01

    Hematological malignancies and treatment with hematopoietic SCT are known to affect patients’ quality of life. The problem profile and care needs of this patient group need clarification, however. This study aimed to assess distress, problems and care needs after allo- or auto-SCT, and to identify

  12. Distress, problems and supportive care needs of patients treated with auto- or allo-SCT

    NARCIS (Netherlands)

    Braamse, A.M.J.; van Meijel, B.; Visser, O.; Huijgens, P.C.; Beekman, A.T.F.; Dekker, J.

    2014-01-01

    Hematological malignancies and treatment with hematopoietic SCT are known to affect patients' quality of life. The problem profile and care needs of this patient group need clarification, however. This study aimed to assess distress, problems and care needs after allo-or auto-SCT, and to identify

  13. Artisanal Fisheries Research: A Need for Globalization?

    Science.gov (United States)

    Oliveira Júnior, José Gilmar C; Silva, Luana P S; Malhado, Ana C M; Batista, Vandick S; Fabré, Nidia N; Ladle, Richard J

    2016-01-01

    Given limited funds for research and widespread degradation of ecosystems, environmental scientists should geographically target their studies where they will be most effective. However, in academic areas such as conservation and natural resource management there is often a mismatch between the geographic foci of research effort/funding and research needs. The former frequently being focused in the developed world while the latter is greater in the biodiverse countries of the Global South. Here, we adopt a bibliometric approach to test this hypothesis using research on artisanal fisheries. Such fisheries occur throughout the world, but are especially prominent in developing countries where they are important for supporting local livelihoods, food security and poverty alleviation. Moreover, most artisanal fisheries in the Global South are unregulated and unmonitored and are in urgent need of science-based management to ensure future sustainability. Our results indicate that, as predicted, global research networks and centres of knowledge production are predominantly located in developed countries, indicating a global mismatch between research needs and capacity.

  14. Matching user needs in health care.

    Science.gov (United States)

    Bremer, G; Leggate, P

    1982-01-01

    Outlines patterns of library service available to users in the (British) National Health Service (NHS); gives preliminary results of a study detailing the character of the library system users, the nature of their needs and the degree to which the library system output meshes with user needs. The NHS library system is composed of widely scattered but small libraries, many of which can be characterized according to the narrow range of needs they serve. The largest libraries of the system, the teaching hospital library, share features of the NHS and university library systems. The most numerous, however, are the postgraduate medical education center libraries and nurse training school libraries. Until recently, there had been no cohesive organizational structure uniting the facilities and services of these various library groups. Regional library systems dating from 1967 have sought to encourage collaboration among libraries and to take into account user needs in policy planning. Recent research into medical libraries conducted by the British Library Research and Development Department points out the need for medical students and doctors to be able to adapt themselves to extracting needed information from any library which they might need to use during their career. Data showed that both clinical and preclinical medical personnel use a wide range of libraries, and are most satisfied with a multifunction library. Interpretation of data was undertaken within a conceptual framework of modelling developed by Checkland which provides a structure for thinking about the system. It is hoped that this approach will help to identify the sort of model of users which the library must maintain in order to provide them with the services they desire.

  15. Physics research needs for ITER

    International Nuclear Information System (INIS)

    Sauthoff, N.R.

    1995-01-01

    Design of ITER entails the application of physics design tools that have been validated against the world-wide data base of fusion research. In many cases, these tools do not yet exist and must be developed as part of the ITER physics program. ITER's considerable increases in power and size demand significant extrapolations from the current data base; in several cases, new physical effects are projected to dominate the behavior of the ITER plasma. This paper focuses on those design tools and data that have been identified by the ITER team and are not yet available; these needs serve as the basis for the ITER Physics Research Needs, which have been developed jointly by the ITER Physics Expert Groups and the ITER design team. Development of the tools and the supporting data base is an on-going activity that constitutes a significant opportunity for contributions to the ITER program by fusion research programs world-wide

  16. Understanding Parents' Child Care Decision-Making: A Foundation for Child Care Policy Making. Research-to-Policy, Research-to-Practice Brief. OPRE 2011-12

    Science.gov (United States)

    Weber, Roberta

    2011-01-01

    Policies such as those related to child care subsidies and quality rating and improvement systems are designed to increase the likelihood that child care and education arrangements meet developmental needs of children and employment needs of parents. Ultimately, parents select child care arrangements, and the quality and stability of these…

  17. The impact of a child's special health care needs on maternal work participation during early motherhood.

    Science.gov (United States)

    Hauge, Lars Johan; Kornstad, Tom; Nes, Ragnhild Bang; Kristensen, Petter; Irgens, Lorentz M; Eskedal, Leif T; Landolt, Markus A; Vollrath, Margarete E

    2013-07-01

    Many women temporarily reduce work hours or stop working when caring for small children. However, mothers of children with special health care needs may face particular challenges balancing childrearing responsibilities and employment demands. This study examines how the work participation among mothers of children with special health care needs compares with that of mothers in general during early motherhood, focusing in particular on the extent of the child's additional health care needs. By linkage of the population-based Norwegian Mother and Child Cohort Study with national registers on employment, child health care needs, and social background factors, 41,255 mothers employed prior to childbirth were followed until child age 3 years to investigate associations between the child's care needs and mother's dropping out of employment. In total, 16.3% of the formerly employed mothers were no longer employed at child age 3 years. Mothers of children with mild care needs did not differ from mothers in general, whereas mothers of children with moderate [Risk Ratio (RR) 1.45; 95% confidence interval (CI) 1.17, 1.80] and severe care needs [RR 2.19; 95% CI 1.67, 2.87] were at substantial risk of not being employed at follow-up. The impact of the child's health care needs remained strong also after adjusting for several factors associated with employment in general. Extensive childhood health care needs are associated with reduced short-term employment prospects and remain a substantial influence on mothers' work participation during early motherhood, irrespective of other important characteristics associated with maternal employment. © 2013 John Wiley & Sons Ltd.

  18. Evaluating palliative care needs in Middle Eastern countries.

    Science.gov (United States)

    Silbermann, Michael; Fink, Regina M; Min, Sung-Joon; Mancuso, Mary P; Brant, Jeannine; Hajjar, Ramzi; Al-Alfi, Nesreen; Baider, Lea; Turker, Ibrahim; ElShamy, Karima; Ghrayeb, Ibtisam; Al-Jadiry, Mazin; Khader, Khaled; Kav, Sultan; Charalambous, Haris; Uslu, Ruchan; Kebudi, Rejin; Barsela, Gil; Kuruku, Nilgün; Mutafoglu, Kamer; Ozalp-Senel, Gulsin; Oberman, Amitai; Kislev, Livia; Khleif, Mohammad; Keoppi, Neophyta; Nestoros, Sophia; Abdalla, Rasha Fahmi; Rassouli, Maryam; Morag, Amira; Sabar, Ron; Nimri, Omar; Al-Qadire, Mohammad; Al-Khalaileh, Murad; Tayyem, Mona; Doumit, Myrna; Punjwani, Rehana; Rasheed, Osaid; Fallatah, Fatimah; Can, Gulbeyaz; Ahmed, Jamila; Strode, Debbie

    2015-01-01

    Cancer incidence in Middle Eastern countries, most categorized as low- and middle-income, is predicted to double in the next 10 years, greater than in any other part of the world. While progress has been made in cancer diagnosis/treatment, much remains to be done to improve palliative care for the majority of patients with cancer who present with advanced disease. To determine knowledge, beliefs, barriers, and resources regarding palliative care services in Middle Eastern countries and use findings to inform future educational and training activities. Descriptive survey. Fifteen Middle Eastern countries; convenience sample of 776 nurses (44.3%), physicians (38.3%) and psychosocial, academic, and other health care professionals (17.4%) employed in varied settings. Palliative care needs assessment. Improved pain management services are key facilitators. Top barriers include lack of designated palliative care beds/services, community awareness, staff training, access to hospice services, and personnel/time. The nonexistence of functioning home-based and hospice services leaves families/providers unable to honor patient wishes. Respondents were least satisfied with discussions around advance directives and wish to learn more about palliative care focusing on communication techniques. Populations requiring special consideration comprise: patients with ethnic diversity, language barriers, and low literacy; pediatric and young adults; and the elderly. The majority of Middle Eastern patients with cancer are treated in outlying regions; the community is pivotal and must be incorporated into future plans for developing palliative care services. Promoting palliative care education and certification for physicians and nurses is crucial; home-based and hospice services must be sustained.

  19. Advancing adolescent health and health services in Saudi Arabia: exploring health-care providers' training, interest, and perceptions of the health-care needs of young people

    Directory of Open Access Journals (Sweden)

    AlBuhairan FS

    2014-09-01

    Full Text Available Fadia S AlBuhairan,1–3 Tina M Olsson3,4 1Department of Pediatrics, King Abdulaziz Medical City, Riyadh, Saudi Arabia; 2King Saud bin Abdulaziz University for Health Sciences, Riyadh, Saudi Arabia; 3King Abdullah International Medical Research Center, Riyadh, Saudi Arabia; 4School of Social Work, Lund University, Lund, Sweden Background: Adolescent health is regarded as central to global health goals. Investments made in adolescent health and health services protect the improvements witnessed in child health. Though Saudi Arabia has a large adolescent population, adolescent health-care only began to emerge in recent years, yet widespread uptake has been very limited. Health-care providers are key in addressing and providing the necessary health-care services for adolescents, and so this study was conducted with the aim of identifying opportunities for the advancement of knowledge transfer for adolescent health services in Saudi Arabia. Methods: This Web-based, cross-sectional study was carried out at four hospitals in Saudi Arabia. Physicians and nurses were invited to participate in an online survey addressing their contact with adolescent patients, and training, knowledge, and attitudes towards adolescent health-care. Results: A total of 232 professionals participated. The majority (82.3% reported sometimes or always coming into contact with adolescent patients. Less than half (44%, however, had received any sort of training on adolescent health during their undergraduate or postgraduate education, and only 53.9% reported having adequate knowledge about the health-care needs of adolescents. Nurses perceived themselves as having more knowledge in the health-care needs of adolescents and reported feeling more comfortable in communicating with adolescents as compared with physicians. The majority of participants were interested in gaining further skills and knowledge in adolescent health-care and agreed or strongly agreed that adolescents have

  20. CAREGIVERS’ NEEDS IN CARING FOR RELATIVES WITH SCHIZOPHRENIA IN MEDAN INDONESIA: A PHENOMENOLOGICAL STUDY

    Directory of Open Access Journals (Sweden)

    Jenny Marlindawani Purba

    2017-12-01

    Full Text Available Background: A caregiver is a primary nurse and has a major role in providing care for people with schizophrenia. Caring for those with schizophrenia for a long period of time is a challenge for families, especially caregivers. Various needs ought to be studied by nurses to assist caregivers in providing optimal care for family members who experience schizophrenia. Objective: This qualitative study aims to explore the needs of caregivers in treating schizophrenia at home. Methods: The method used in this study is the method of purposive sampling with the number of participants as many as 10 people with criteria: 1 have family members diagnosed with schizophrenia, 2 directly involved in home care patients, 3 caring for schizophrenia for more than one year, 4 willing to be a participant by signing informed consent, 4 being able to identify what is needed in treating schizophrenia. Colaizzi is used to analyze interview data. Results: The results of the study found four themes of caregiver needs in caring for schizophrenia patients at home, namely: 1 seeking information about schizophrenia, 2 sought schizophrenic relatives’ recovery, 3 looking for appropriate rehabilitation for relatives with schizophrenias, and 4 utilizing mental health facilities. Conclusions: It is expected that nurses have the knowledge and skills in identifying and helping families, especially caregivers, to meet unmet needs so they can optimize home care.

  1. Exploring perceived barriers, drivers, impacts and the need for evaluation of public involvement in health and social care research: a modified Delphi study

    Science.gov (United States)

    Snape, D; Kirkham, J; Britten, N; Froggatt, K; Gradinger, F; Lobban, F; Popay, Jennie; Wyatt, K; Jacoby, Ann

    2014-01-01

    Objective To explore areas of consensus and conflict in relation to perceived public involvement (PI) barriers and drivers, perceived impacts of PI and ways of evaluating PI approaches in health and social care research. Background Internationally and within the UK the recognition of potential benefits of PI in health and social care research is gathering momentum and PI is increasingly identified by organisations as a prerequisite for funding. However, there is relatively little examination of the impacts of PI and how those impacts might be measured. Design Mixed method, three-phase, modified Delphi technique, conducted as part of a larger MRC multiphase project. Sample Clinical and non-clinical academics, members of the public, research managers, commissioners and funders. Findings This study found high levels of consensus about the most important barriers and drivers to PI. There was acknowledgement that tokenism was common in relation to PI; and strong support for the view that demonstrating the impacts and value of PI was made more difficult by tokenistic practice. PI was seen as having intrinsic value; nonetheless, there was clear support for the importance of evaluating its impact. Research team cohesion and appropriate resources were considered essential to effective PI implementation. Panellists agreed that PI can be challenging, but can be facilitated by clear guidance, together with models of good practice and measurable standards. Conclusions This study is the first to present empirical evidence of the opinions voiced by key stakeholders on areas of consensus and conflict in relation to perceived PI barriers and drivers, perceived impacts of PI and the need to evaluate PI. As such it further contributes to debate around best practice in PI, the potential for tokenism and how best to evaluate the impacts of PI. These findings have been used in the development of the Public Involvement Impact Assessment Framework (PiiAF), an online resource which offers

  2. Primary Care Research in the Patient-Centered Outcomes Research Institute's Portfolio.

    Science.gov (United States)

    Selby, Joe V; Slutsky, Jean R

    2016-04-01

    In their article in this issue, Mazur and colleagues analyze the characteristics of early recipients of funding from the Patient-Centered Outcomes Research Institute (PCORI). Mazur and colleagues note correctly that PCORI has a unique purpose and mission and suggest that it should therefore have a distinct portfolio of researchers and departments when compared with other funders such as the National Institutes of Health (NIH). Responding on behalf of PCORI, the authors of this Commentary agree with the characterization of PCORI's mission as distinct from that of NIH and others. They agree too that data found on PCORI's Web site demonstrate that PCORI's portfolio of researchers and departments is more diverse and more heavily populated with clinician researchers, as would be expected. The authors take issue with Mazur and colleagues' suggestion that because half of clinical visits occur within primary care settings, half of PCORI's funded research should be based in primary care departments. PCORI's portfolio reflects what patients and others tell PCORI are the critical questions. Many of these do, in fact, occur with more complex conditions in specialty care. The authors question whether the research of primary care departments is too narrowly focused and whether it sufficiently considers study of these complex conditions. Research on more complex conditions including heart failure, coronary artery disease, and multiple comorbid conditions could be highly valuable when approached from the primary care perspective, where many of the comparative effectiveness questions first arise.

  3. Autonomy support and need satisfaction in prevocational programs on care farms: The self-determination theory perspective.

    Science.gov (United States)

    Ellingsen-Dalskau, Lina H; Morken, Margrete; Berget, Bente; Pedersen, Ingeborg

    2015-01-01

    Mental health problems are leading causes for early and prolonged withdrawal from the workforce. Green work on care farms represents a prevocational training program intended to stimulate return to work for people with mental health problems. Research suggests that care farms may improve mental health, but there is still little knowledge of the subjective perspective of clients in green work programs. To gain a deeper and broader understanding of the individual experiences of people with mental health problems participating in green work on care farms in Norway. A hermeneutic phenomenological research design was applied. Ten semi-structured interviews were conducted. The self-determination theory (SDT) was adapted to gain a deeper understanding of the themes that emerged in the analysis process of the interviews. Five main themes materialize describing participants' experiences within the green work program. The main themes consist of (1) structure and flexibility, (2) understanding and acknowledgement, (3) guidance and positive feedback, (4) nature and animals, and (5) reflections on personal functioning and the future. The main themes identified indicate a high degree of autonomy support and need satisfaction within the care farm context, which according to SDT can facilitate good human functioning, and well-being.

  4. Review of parental activation interventions for parents of children with special health care needs.

    Science.gov (United States)

    Mirza, M; Krischer, A; Stolley, M; Magaña, S; Martin, M

    2018-05-01

    A large number of U.S. children are identified as having special health care needs (CSHCN). Despite parents' central role in managing their child's needs, many parents report difficulties in navigating service systems, finding information about their child's condition, and accessing health care and community resources. Therefore, there is a need for interventions that "activate" parents of children with special health care needs to increase their knowledge, skills, and confidence in managing, coordinating, and advocating for their child's needs. This study sought to review the existing literature and examine the effects of parent support interventions that focus on parental activation either in part or whole, on child, parent, or family outcomes. Specific aims included (a) summarizing the nature and content of interventions; (b) describing changes in relevant outcomes; (c) identifying limitations and making recommendations for future research. Following electronic databases were searched: MEDLINE, EMBASE, PsycINFO via ProQuest, PubMed, Cumulative Index to Nursing and Allied Health via EBSCO, Education Resources Information Center (ERIC) via ProQuest, The Cochrane Library (Cochrane Database of Systematic Reviews, Cochrane Central Register of Controlled Trials, Cochrane Methodology Register), and Google Scholar. Twenty-two studies were selected, data were extracted, and quality was assessed using standardized procedures. Five intervention categories were identified: parent-to-parent supports, psycho-educational groups, content-specific groups, community health worker model, and self-management-based interventions. Although most studies showed positive effects of the intervention, evidence was inconsistent for parental outcomes such as self-efficacy, confidence, strain, depression, and perceived social support. Evidence was more consistent in showing improvement in parent coping and in use of community-based services and resources. There is a need to boost active

  5. Ontario's primary care reforms have transformed the local care landscape, but a plan is needed for ongoing improvement.

    Science.gov (United States)

    Hutchison, Brian; Glazier, Richard

    2013-04-01

    Primary care in Ontario, Canada, has undergone a series of reforms designed to improve access to care, patient and provider satisfaction, care quality, and health system efficiency and sustainability. We highlight key features of the reforms, which included patient enrollment with a primary care provider; funding for interprofessional primary care organizations; and physician reimbursement based on varying blends of fee-for-service, capitation, and pay-for-performance. With nearly 75 percent of Ontario's population now enrolled in these new models, total payments to primary care physicians increased by 32 percent between 2006 and 2010, and the proportion of Ontario primary care physicians who reported overall satisfaction with the practice of medicine rose from 76 percent in 2009 to 84 percent in 2012. However, primary care in Ontario also faces challenges. There is no meaningful performance measurement system that tracks the impact of these innovations, for example. A better system of risk adjustment is also needed in capitated plans so that groups have the incentive to take on high-need patients. Ongoing investment in these models is required despite fiscal constraints. We recommend a clearly articulated policy road map to continue the transformation.

  6. 76 FR 35221 - Proposed Collection; Comment Request; NINR End-of-Life and Palliative Care Science Needs...

    Science.gov (United States)

    2011-06-16

    ... Request; NINR End-of-Life and Palliative Care Science Needs Assessment: Funding Source Questionnaire... Collection: Title: NINR End-of-Life and Palliative Care Science Needs Assessment: Funding Source... Collection: The NINR End-of-Life Science Palliative Care (EOL PC) Needs Assessment: Funding Source...

  7. Self-perceived care needs in older adults with joint pain and comorbidity.

    Science.gov (United States)

    Hermsen, Lotte A H; Hoogendijk, Emiel O; van der Wouden, Johannes C; Smalbrugge, Martin; Leone, Stephanie S; van der Horst, Henriëtte E; Dekker, Joost

    2018-05-01

    The aim of this study was to explore self-perceived care needs and determinants of identified needs in older adults with joint pain and comorbidity. This is a cross-sectional study using baseline data from a cohort study of older adults in the Netherlands (≥65 years) with joint pain and comorbidity (n = 407). We used the Camberwell Assessment of Need for the Elderly (CANE) to assess self-perceived care needs. Regression analyses were conducted to examine the associations between needs and sociodemographic factors (age, gender, partner status and educational level), physical factors (pain intensity, comorbidity, frailty and physical functioning) and psychosocial factors (anxiety, depression and social support). Older adults with joint pain and comorbidity reported on average 4.0 care needs out of 13 CANE items, of which 0.3 were unmet. High levels of environmental and physical needs were reported, such as needs with regard to physical illness (91%), household (61%) and mobility/falls (53%). However, most of these needs were met. Only few people reported psychosocial needs, but a large proportion of these needs was unmet, especially regarding company (66.7%) and daytime activities (37%). Psychosocial needs were more often present in frail participants (OR 2.40, 95% CI 1.25-4.61), and those with less perceived social support (OR 1.05, 95% CI 1.01-1.08) and more depressive symptoms (OR 1.17, 95% CI 1.07-1.26). Unmet needs are mainly present in the psychosocial domain. Specific attention targeted at these unmet needs may improve psychosocial well-being of older adults with joint pain and comorbidity.

  8. Barriers and facilitators to recruitment of physicians and practices for primary care health services research at one centre

    Directory of Open Access Journals (Sweden)

    Hogg William

    2010-12-01

    Full Text Available Abstract Background While some research has been conducted examining recruitment methods to engage physicians and practices in primary care research, further research is needed on recruitment methodology as it remains a recurrent challenge and plays a crucial role in primary care research. This paper reviews recruitment strategies, common challenges, and innovative practices from five recent primary care health services research studies in Ontario, Canada. Methods We used mixed qualitative and quantitative methods to gather data from investigators and/or project staff from five research teams. Team members were interviewed and asked to fill out a brief survey on recruitment methods, results, and challenges encountered during a recent or ongoing project involving primary care practices or physicians. Data analysis included qualitative analysis of interview notes and descriptive statistics generated for each study. Results Recruitment rates varied markedly across the projects despite similar initial strategies. Common challenges and creative solutions were reported by many of the research teams, including building a sampling frame, developing front-office rapport, adapting recruitment strategies, promoting buy-in and interest in the research question, and training a staff recruiter. Conclusions Investigators must continue to find effective ways of reaching and involving diverse and representative samples of primary care providers and practices by building personal connections with, and buy-in from, potential participants. Flexible recruitment strategies and an understanding of the needs and interests of potential participants may also facilitate recruitment.

  9. Specialist palliative care nurses' management of the needs of patients with depression.

    Science.gov (United States)

    Hayes, Jessica Elizabeth; Hart, Bethne; Phillips, Jane

    2017-06-02

    Depression is an important condition to consider if we are to optimise the care outcomes for patients with palliative care needs. Depression has a high incidence in palliative patients, with up to 15% diagnosed with major depression and 37% expressing some form of depressive symptoms ( O'Connor et al, 2010 ). The challenge is to ensure that palliative care patients with depression are identified in a timely manner and that their depression is effectively managed. To examine how Australian specialist inpatient palliative care nurses perceive, assess and respond to depression in a patient case study. This descriptive pilot study is a replication of a United States study by Little et al (2005) , exploring contemporary Australian specialist palliative care nurses' screening, assessment and management of depression in people with a progressive life-limiting illness. A survey titled 'Specialist palliative care nurses managing patients with complex care needs' questioned the nursing assessment, knowledge and clinical care priorities related to a case vignette of a patient demonstrating signs of depression. A total of 33 nurses completed this survey. Less than half (39.4%) of the participants identified depression as a major issue arising from the case vignette. Depression screening tools were not widely known. Functionality assessments measuring activities of daily living were the most recognised and widely used tools by participants. This small sample pilot study demonstrated that specialist palliative care nurses are still not confident in their screening and responding to a patient with depression. The available evidenced based depression screening tools were unfamiliar to these nurses and not widely used which can result in depression remaining undetected and undermanaged. The connections between physical health and mental health need stronger recognition and response within nursing care of palliative patients.

  10. The embodied spaces of children with complex care needs: Effects on the social realities and power negotiations of families.

    Science.gov (United States)

    Woodgate, Roberta L; Zurba, Melanie; Edwards, Marie; Ripat, Jacquie D; Rempel, Gina

    2017-07-01

    This paper presents research findings that advance knowledge around the power and agency families with children with complex care needs (CCN). Our conceptual framework uses concepts from geography towards situating the experiences and social realities of family carers within the 'embodied space of care'. The data originate from a longitudinal qualitative study of Canadian families with children with CCN. Findings reveal that interactions and decision-making processes relating to health and everyday life were complex and socially interconnected, and emphasize the need for provisions for family-based decision-making and enhanced social inclusion of families and the importance of the renegotiation of power. Copyright © 2017 Elsevier Ltd. All rights reserved.

  11. What research impacts do Australian primary health care researchers expect and achieve?

    Directory of Open Access Journals (Sweden)

    Reed Richard L

    2011-11-01

    Full Text Available Abstract Background Funding for research is under pressure to be accountable in terms of benefits and translation of research findings into practice and policy. Primary health care research has considerable potential to improve health care in a wide range of settings, but little is known about the extent to which these impacts actually occur. This study examines the impact of individual primary health care research projects on policy and practice from the perspective of Chief Investigators (CIs. Methods The project used an online survey adapted from the Buxton and Hanney Payback Framework to collect information about the impacts that CIs expected and achieved from primary health care research projects funded by Australian national competitive grants. Results and Discussion Chief Investigators (CIs provided information about seventeen completed projects. While no CI expected their project to have an impact in every domain of the framework used in the survey, 76% achieved at least half the impacts they expected. Sixteen projects had published and/or presented their work, 10 projects included 11 doctorate awards in their research capacity domain. All CIs expected their research to lead to further research opportunities with 11 achieving this. Ten CIs achieved their expectation of providing information for policy making but only four reported their research had influenced policy making. However 11 CIs achieved their expectation of providing information for organizational decision making and eight reported their research had influenced organizational decision making. Conclusion CIs reported that nationally funded primary health care research projects made an impact on knowledge production, staff development and further research, areas within the realm of influence of the research team and within the scope of awareness of the CIs. Some also made an impact on policy and organizational decision-making, and on localized clinical practice and service

  12. Virtual Reality Technologies for Research and Education in Obesity and Diabetes: Research Needs and Opportunities

    Science.gov (United States)

    Ershow, Abby G; Peterson, Charles M; Riley, William T; Rizzo, Albert “Skip”; Wansink, Brian

    2011-01-01

    The rising rates, high prevalence, and adverse consequences of obesity and diabetes call for new approaches to the complex behaviors needed to prevent and manage these conditions. Virtual reality (VR) technologies, which provide controllable, multisensory, interactive three-dimensional (3D) stimulus environments, are a potentially valuable means of engaging patients in interventions that foster more healthful eating and physical activity patterns. Furthermore, the capacity of VR technologies to motivate, record, and measure human performance represents a novel and useful modality for conducting research. This article summarizes background information and discussions for a joint July 2010 National Institutes of Health – Department of Defense workshop entitled Virtual Reality Technologies for Research and Education in Obesity and Diabetes. The workshop explored the research potential of VR technologies as tools for behavioral and neuroscience studies in diabetes and obesity, and the practical potential of VR in fostering more effective utilization of diabetes- and obesity-related nutrition and lifestyle information. Virtual reality technologies were considered especially relevant for fostering desirable health-related behaviors through motivational reinforcement, personalized teaching approaches, and social networking. Virtual reality might also be a means of extending the availability and capacity of health care providers. Progress in the field will be enhanced by further developing available platforms and taking advantage of VR’s capabilities as a research tool for well-designed hypothesis-testing behavioral science. Multidisciplinary collaborations are needed between the technology industry and academia, and among researchers in biomedical, behavioral, pedagogical, and computer science disciplines. Research priorities and funding opportunities for use of VR to improve prevention and management of obesity and diabetes can be found at agency websites (National

  13. Virtual reality technologies for research and education in obesity and diabetes: research needs and opportunities.

    Science.gov (United States)

    Ershow, Abby G; Peterson, Charles M; Riley, William T; Rizzo, Albert Skip; Wansink, Brian

    2011-03-01

    The rising rates, high prevalence, and adverse consequences of obesity and diabetes call for new approaches to the complex behaviors needed to prevent and manage these conditions. Virtual reality (VR) technologies, which provide controllable, multisensory, interactive three-dimensional (3D) stimulus environments, are a potentially valuable means of engaging patients in interventions that foster more healthful eating and physical activity patterns. Furthermore, the capacity of VR technologies to motivate, record, and measure human performance represents a novel and useful modality for conducting research. This article summarizes background information and discussions for a joint July 2010 National Institutes of Health - Department of Defense workshop entitled Virtual Reality Technologies for Research and Education in Obesity and Diabetes. The workshop explored the research potential of VR technologies as tools for behavioral and neuroscience studies in diabetes and obesity, and the practical potential of VR in fostering more effective utilization of diabetes- and obesity-related nutrition and lifestyle information. Virtual reality technologies were considered especially relevant for fostering desirable health-related behaviors through motivational reinforcement, personalized teaching approaches, and social networking. Virtual reality might also be a means of extending the availability and capacity of health care providers. Progress in the field will be enhanced by further developing available platforms and taking advantage of VR's capabilities as a research tool for well-designed hypothesis-testing behavioral science. Multidisciplinary collaborations are needed between the technology industry and academia, and among researchers in biomedical, behavioral, pedagogical, and computer science disciplines. Research priorities and funding opportunities for use of VR to improve prevention and management of obesity and diabetes can be found at agency websites (National

  14. "The Doctor Needs to Know": Acceptability of Smartphone Location Tracking for Care Coordination.

    Science.gov (United States)

    Liss, David T; Serrano, Eloisa; Wakeman, Julie; Nowicki, Christine; Buchanan, David R; Cesan, Ana; Brown, Tiffany

    2018-05-04

    stated their willingness to have their location tracked by the proposed app due to its perceived benefits. Fourth, the most frequently mentioned barriers to acceptability were inconveniences such as "false alarm" notifications and smartphone battery drainage. Finally, there was some tension between how to maximize usability without unnecessarily increasing user burden. Both clinicians and care managers expressed interest in receiving messages from the app at the time of hospital arrival and at discharge. Clinicians were particularly interested in conducting outreach during ED visits and inpatient stays, while care managers expressed more interest in coordinating postdischarge care. High-risk primary care patients in a safety net setting reported a willingness to utilize smartphone location tracking technology to facilitate care coordination. Further research is needed on the development and implementation of new smartphone-based approaches to care coordination. ©David T Liss, Eloisa Serrano, Julie Wakeman, Christine Nowicki, David R Buchanan, Ana Cesan, Tiffany Brown. Originally published in JMIR Mhealth and Uhealth (http://mhealth.jmir.org), 04.05.2018.

  15. Artisanal Fisheries Research: A Need for Globalization?

    Science.gov (United States)

    Batista, Vandick S.; Fabré, Nidia N.

    2016-01-01

    Given limited funds for research and widespread degradation of ecosystems, environmental scientists should geographically target their studies where they will be most effective. However, in academic areas such as conservation and natural resource management there is often a mismatch between the geographic foci of research effort/funding and research needs. The former frequently being focused in the developed world while the latter is greater in the biodiverse countries of the Global South. Here, we adopt a bibliometric approach to test this hypothesis using research on artisanal fisheries. Such fisheries occur throughout the world, but are especially prominent in developing countries where they are important for supporting local livelihoods, food security and poverty alleviation. Moreover, most artisanal fisheries in the Global South are unregulated and unmonitored and are in urgent need of science-based management to ensure future sustainability. Our results indicate that, as predicted, global research networks and centres of knowledge production are predominantly located in developed countries, indicating a global mismatch between research needs and capacity. PMID:26942936

  16. Artisanal Fisheries Research: A Need for Globalization?

    Directory of Open Access Journals (Sweden)

    José Gilmar C Oliveira Júnior

    Full Text Available Given limited funds for research and widespread degradation of ecosystems, environmental scientists should geographically target their studies where they will be most effective. However, in academic areas such as conservation and natural resource management there is often a mismatch between the geographic foci of research effort/funding and research needs. The former frequently being focused in the developed world while the latter is greater in the biodiverse countries of the Global South. Here, we adopt a bibliometric approach to test this hypothesis using research on artisanal fisheries. Such fisheries occur throughout the world, but are especially prominent in developing countries where they are important for supporting local livelihoods, food security and poverty alleviation. Moreover, most artisanal fisheries in the Global South are unregulated and unmonitored and are in urgent need of science-based management to ensure future sustainability. Our results indicate that, as predicted, global research networks and centres of knowledge production are predominantly located in developed countries, indicating a global mismatch between research needs and capacity.

  17. Needed Research in Business Education.

    Science.gov (United States)

    Scriven, Jolene D.

    1991-01-01

    Based on the recommendations of seven business educators and administrators, suggestions for needed research are given in the categories of business education, administration, curriculum, teacher education, teaching methods, international business, and political implications. (SK)

  18. Measuring care of the elderly: psychometric testing and modification of the Time in Care instrument for measurement of care needs in nursing homes

    Directory of Open Access Journals (Sweden)

    Nyberg Per

    2008-09-01

    Full Text Available Abstract Background Aging entails not only a decrease in the ability to be active, but also a trend toward increased dependence to sustain basic life functions. An important aspect for appropriately elucidating the individual's care needs is the ability to measure them both simply and reliably. Since 2006 a new version of the Time in Care needs (TIC-n instrument (19-item version has been explored and used in one additional municipality with the same structure as the one described in an earlier study. Methods The TIC-n assessment was conducted on a total of 1282 care recipients. Factor analysis (principal component was applied to explore the construct validity of the TIC-n. Cronbach's alpha was calculated to test reliability and for each of the items remaining in the instrument after factor analysis, an inter-rater comparison was carried out on all recipients in both municipalities. Independently of each other, a weighted Kappa (Kw was calculated. Results. The mean of each weighted Kappa (Kw for the dimensions in the two municipalities was 0.75 and 0.76, respectively. Factor analysis showed that all 19 items had a factor loading of ≥ 0.40. Three factors (General Care, Medical Care and Cognitive Care were created. Conclusion The TIC-n instrument has now been tested for validity and reliability in two municipalities with satisfactory results. However, TIC-n can not yet be used as a golden standard, but it can be recommended for use of measurement of individual care needs in municipal elderly care.

  19. Supporting parents following childhood traumatic brain injury: a qualitative study to examine information and emotional support needs across key care transitions.

    Science.gov (United States)

    Kirk, S; Fallon, D; Fraser, C; Robinson, G; Vassallo, G

    2015-03-01

    Traumatic brain injury (TBI) is the leading cause of death and acquired disability in childhood. Research has demonstrated that TBI can lead to long-term physical, cognitive, emotional and behavioural difficulties for children and parental stress. Less is known about how parents experience a childhood brain injury and their information and support needs. This study aimed to examine parents' experiences and support needs following a childhood TBI from the time of the accident to their child's discharge home. Qualitative semi-structured interviews were conducted with 29 parents/carers of children who had experienced a severe TBI. Participants were recruited from one children's tertiary centre in the UK. Data were analysed using the Framework approach. Parents had unmet information and emotional support needs across the care trajectory from the time of the accident to their child's return home. Information needs related to the impact of the TBI on their child; current and future treatment/rehabilitation plans; helping their child and managing their behaviour; accessing services/support. They lacked information and support for care transitions. In different settings parents faced particular barriers to having their information needs met. Parents' felt they needed emotional support in coming to terms with witnessing the accident and the loss of their former child. Lack of community support related not only to service availability but to a general lack of understanding of the impact of TBI on children, particularly when this was invisible. Overall parents felt unsupported in coping with children's behavioural and psychological difficulties. Taking a holistic approach to examining parents' experiences and support needs has enabled their changing needs to be highlighted across key care transitions within hospital and community settings and the service implications identified. Improvements in care co-ordination across care transitions are needed to ensure continuity of care

  20. Role of community pharmacists in asthma – Australian research highlighting pathways for future primary care models

    Directory of Open Access Journals (Sweden)

    Saini B

    2011-04-01

    Full Text Available Asthma is one of the most common chronic conditions affecting the Australian population. Amongst primary healthcare professionals, pharmacists are the most accessible and this places pharmacists in an excellent position to play a role in the management of asthma. Globally, trials of many community pharmacy-based asthma care models have provided evidence that pharmacist delivered interventions can improve clinical, humanistic and economic outcomes for asthma patients. In Australia, a decade of coordinated research efforts, in various aspects of asthma care, has culminated in the implementation trial of the Pharmacy Asthma Management Service (PAMS, a comprehensive disease management model. There has been research investigating asthma medication adherence through data mining, ways in which usual asthma care can be improved. Our research has focused on self-management education, inhaler technique interventions, spirometry trials, interprofessional models of care, and regional trials addressing the particular needs of rural communities. We have determined that inhaler technique education is a necessity and should be repeated if correct technique is to be maintained. We have identified this effectiveness of health promotion and health education, conducted within and outside the confines of the pharmacy, in public for a and settings such as schools, and established that this outreach role is particularly well received and increases the opportunity for people with asthma to engage in their asthma management. Our research has identified that asthma patients have needs which pharmacists delivering specialized models of care, can address. There is a lot of evidence for the effectiveness of asthma care by pharmacists, the future must involve integration of this role into primary care.

  1. Parent education programmes for special health care needs children: a systematic review.

    Science.gov (United States)

    Jackson, Alun C; Liang, Rachel P-T; Frydenberg, Erica; Higgins, Rosemary O; Murphy, Barbara M

    2016-06-01

    The aim of this review was to examine parent education programmes for families with children with special health care needs, to better design interventions focusing on the psychosocial aspects of living with a child's chronic condition. Studies of familial coping with children with special health care needs indicate high levels of parenting stress, with families with children with special health care needs at risk of major psychological and social disturbances and financial strain. Despite increased knowledge of the factors affecting children with special health care needs themselves, evidence for the effectiveness of preventative and treatment interventions in the form of parent education programmes remains limited. Systematic review using PRISMA guidelines. Multi database Boolean searches in EBSCO Discovery Services using the search terms 'complex/special health care needs children', 'child/pediatric/congenital heart disease', 'chronic illness (including diabetes, cancer and cystic fibrosis)', 'family coping', 'siblings' AND 'parenting/family support programs' were conducted. Analysis of 13 included studies showed evidence for the effectiveness of both mixed-health condition and condition-specific parenting programmes delivered in a variety of modes. Three common core intervention approaches were: use of narrative therapy enabling families to tell their own stories, thus facilitating emotional processing and (co-) construction of meaning; a focus on strengthening protective factors such as enhancing parents' skills in communication, and behavioural management and provision of psycho-education to deepen parents' understanding of their child's condition and associated developmental challenges. Irrespective of the type of outcome measures used in the studies, the review showed that there were positive gains and improvements across a range of areas of family functioning such as mental health, parenting, communication and problem-solving skills postprogramme

  2. Health information technology workforce needs of rural primary care practices.

    Science.gov (United States)

    Skillman, Susan M; Andrilla, C Holly A; Patterson, Davis G; Fenton, Susan H; Ostergard, Stefanie J

    2015-01-01

    This study assessed electronic health record (EHR) and health information technology (HIT) workforce resources needed by rural primary care practices, and their workforce-related barriers to implementing and using EHRs and HIT. Rural primary care practices (1,772) in 13 states (34.2% response) were surveyed in 2012 using mailed and Web-based questionnaires. EHRs or HIT were used by 70% of respondents. Among practices using or intending to use the technology, most did not plan to hire new employees to obtain EHR/HIT skills and even fewer planned to hire consultants or vendors to fill gaps. Many practices had staff with some basic/entry, intermediate and/or advanced-level skills, but nearly two-thirds (61.4%) needed more staff training. Affordable access to vendors/consultants who understand their needs and availability of community college and baccalaureate-level training were the workforce-related barriers cited by the highest percentages of respondents. Accessing the Web/Internet challenged nearly a quarter of practices in isolated rural areas, and nearly a fifth in small rural areas. Finding relevant vendors/consultants and qualified staff were greater barriers in small and isolated rural areas than in large rural areas. Rural primary care practices mainly will rely on existing staff for continued implementation and use of EHR/HIT systems. Infrastructure and workforce-related barriers remain and must be overcome before practices can fully manage patient populations and exchange patient information among care system partners. Efforts to monitor adoption of these skills and ongoing support for continuing education will likely benefit rural populations. © 2014 National Rural Health Association.

  3. Information needs of case managers caring for persons living with HIV.

    Science.gov (United States)

    Schnall, Rebecca; Cimino, James J; Currie, Leanne M; Bakken, Suzanne

    2011-05-01

    The goals of this study were to explore the information needs of case managers who provide services to persons living with HIV (PLWH) and to assess the applicability of the Information Needs Event Taxonomy in a new population. The study design was observational with data collection via an online survey. Responses to open-ended survey questions about the information needs of case managers (n=94) related to PLWH of three levels of care complexity were categorized using the Information Needs Event Taxonomy. The most frequently identified needs were related to patient education resources (33%), patient data (23%), and referral resources (22%) accounting for 79% of all (N=282) information needs. Study limitations include selection bias, recall bias, and a relatively narrow focus of the study on case-manager information needs in the context of caring for PLWH. The study findings contribute to the evidence base regarding information needs in the context of patient interactions by: (1) supporting the applicability of the Information Needs Event Taxonomy and extending it through addition of a new generic question; (2) providing a foundation for the addition of context-specific links to external information resources within information systems; (3) applying a new approach for elicitation of information needs; and (4) expanding the literature regarding addressing information needs in community-based settings for HIV services.

  4. Service Approaches to Young People with Complex Needs Leaving Out-of-Home Care

    Science.gov (United States)

    Malvaso, Catia; Delfabbro, Paul; Hackett, Louisa; Mills, Hayley

    2016-01-01

    Although leaving statutory out-of-home care can be a challenging time for many young people, it is recognised that young people who have multiple or complex needs find this transition particularly difficult. This study aims to gain a deeper understanding of the challenges faced by care leavers who have complex needs, as well as to identify some of…

  5. Qualitative Research in Emergency Care Part I: Research Principles and Common Applications.

    Science.gov (United States)

    Choo, Esther K; Garro, Aris C; Ranney, Megan L; Meisel, Zachary F; Morrow Guthrie, Kate

    2015-09-01

    Qualitative methods are increasingly being used in emergency care research. Rigorous qualitative methods can play a critical role in advancing the emergency care research agenda by allowing investigators to generate hypotheses, gain an in-depth understanding of health problems or specific populations, create expert consensus, and develop new intervention and dissemination strategies. This article, Part I of a two-article series, provides an introduction to general principles of applied qualitative health research and examples of its common use in emergency care research, describing study designs and data collection methods most relevant to our field, including observation, individual interviews, and focus groups. In Part II of this series, we will outline the specific steps necessary to conduct a valid and reliable qualitative research project, with a focus on interview-based studies. These elements include building the research team, preparing data collection guides, defining and obtaining an adequate sample, collecting and organizing qualitative data, and coding and analyzing the data. We also discuss potential ethical considerations unique to qualitative research as it relates to emergency care research. © 2015 by the Society for Academic Emergency Medicine.

  6. Oral health status and need for oral care of care-dependent indwelling elderly : from admission to death

    NARCIS (Netherlands)

    Hoeksema, Arie R; Peters, Lilian L; Raghoebar, Gerry M; Meijer, Henny J A; Vissink, Arjan; Visser, Anita

    The objective of this study is to assess oral health and oral status of elderly patients newly admitted to a nursing home from admission until death. Oral health, oral status, need for dental care, cooperation with dental treatment, and given dental care were assessed by two geriatric dentists in

  7. Shaping Literacy Achievement: Research We Have, Research We Need

    Science.gov (United States)

    Pressley, Michael, Ed.; Billman, Alison K., Ed.; Perry, Kristen H., Ed.; Reffitt, Kelly E., Ed.; Reynolds, Julia Moorhead, Ed.

    2007-01-01

    In the era of No Child Left Behind, what literacy research is still needed? How should it be conducted? And what role does research play in determining the kinds of literacy experiences that actually take place in classrooms? This forward-thinking book brings together leading authorities to address these vital and hotly debated questions.…

  8. Interest in Collaborative, Practice-Based Research Networks in Pediatric Refugee Health Care.

    Science.gov (United States)

    Shah, Sural; Yun, Katherine

    2018-02-01

    Over the last decade, approximately 200,000 refugee children have resettled across the United States. This population is dispersed, resulting in limited data. Collaborative research networks, where clinicians across distinct practice sites work together to answer research questions, can improve the evidence base regarding clinical care. We distributed a web-based survey to pediatric refugee providers around North America to assess priorities, perceived barriers and benefits to collaborative research. We recruited 57 participants. Of respondents, 89 % were interested in collaborative research, prioritizing: (1) access to health care (33 %), (2) mental health (24 %) and (3) nutrition/growth (24 %). Perceived benefits were "improving clinical practice" (98 %) and "raising awareness about the needs of pediatric refugees" (94 %). Perceived barriers were "too many other priorities" (89 %) and "lack of funding for data entry" (78 %). There is widespread interest in collaborative networks around pediatric refugee healthcare. A successful network will address barriers and emphasize priorities.

  9. Need for palliative care for neurological diseases.

    Science.gov (United States)

    Provinciali, Leandro; Carlini, Giulia; Tarquini, Daniela; Defanti, Carlo Alberto; Veronese, Simone; Pucci, Eugenio

    2016-10-01

    The new concept of palliative care supports the idea of palliation as an early approach to patients affected by disabling and life-limiting disease which focuses on the patient's quality of life along the entire course of disease. This model moves beyond the traditional concept of palliation as an approach restricted to the final stage of disease and widens the fields of intervention. There is a growing awareness of the importance of palliative care not only in oncological diseases but also in many other branches of medicine, and it appears particularly evident in the approach to many of the most frequent neurological diseases that are chronic, incurable and autonomy-impairing illnesses. The definition and implementation of palliative goals and procedures in neurology must take into account the specific features of these conditions in terms of the complexity and variability of symptoms, clinical course, disability and prognosis. The realization of an effective palliative approach to neurological diseases requires specific skills and expertise to adapt the concept of palliation to the peculiarities of these diseases; this approach should be realized through the cooperation of different services and the action of a multidisciplinary team in which the neurologist should play a central role to identify and face the patient's needs. In this view, it is paramount for the neurologist to be trained in these issues to promote the integration of palliative care in the care of neurological patients.

  10. Methodological considerations for researching the financial costs of family caregiving within a palliative care context.

    Science.gov (United States)

    Gardiner, Clare; Allen, Ruth; Moeke-Maxwell, Tess; Robinson, Jackie; Gott, Merryn

    2016-12-01

    The financial impact of family caregiving in a palliative care context has been identified as an issue which requires further research. However, little is known about how research should be conducted in this area. The aim of this study was to explore the opinions of family caregivers in New Zealand regarding the need to conduct research relating to the financial costs of family caregiving and to explore their perspectives on acceptable and feasible methods of data collection. A qualitative study design was adopted. Semistructured interviews were conducted with 30 family caregivers who were either currently caring for a person with palliative care needs or had done so in the past year. All participants felt that research relating to the costs of family caregiving within a palliative care context was important. There was little consensus regarding the most appropriate methods of data collection and administration. Online methods were preferred by many participants, although face-to-face methods were particularly favoured by Ma¯ori participants. Both questionnaires and cost diaries were felt to have strengths and weaknesses. Prospective longitudinal designs are likely to be most appropriate for future research, in order to capture variations in costs over time. The lack of consensus for a single preferred method makes it difficult to formulate specific recommendations regarding methods of data collection; providing participants with options for methods of completion may therefore be appropriate. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

  11. Restructuring Employee Benefits to Meet Health Care Needs in Retirement.

    Science.gov (United States)

    Ward, Richard M; Weinman, Robert B

    2015-01-01

    Health care expenses in retirement are the proverbial elephant in the room. Most employees don't know how big the elephant is. As Medicare solvency and retiree health care issues receive increasing attention, it is time to rethink overall benefit approaches and assess what is appropriate and affordable for an organization to help achieve workforce renewal goals and solve delayed retirement challenges. Just as Medicare was never designed to cover all of the post-65 retiree health care costs, neither is a workplace retirement plan designed to cover 100% of preretiree income. Now employers can consider strategies that may better equip retirees to meet both income needs and health care expenses in the most tax-efficient way. By combining defined contribution retirement and health care plans, employers have the power to increase benefits for employees while maintaining total benefits cost.

  12. Developing a web-based information resource for palliative care: an action-research inspired approach

    Directory of Open Access Journals (Sweden)

    Gliddon Terry

    2007-09-01

    Full Text Available Abstract Background General Practitioners and community nurses rely on easily accessible, evidence-based online information to guide practice. To date, the methods that underpin the scoping of user-identified online information needs in palliative care have remained under-explored. This paper describes the benefits and challenges of a collaborative approach involving users and experts that informed the first stage of the development of a palliative care website 1. Method The action research-inspired methodology included a panel assessment of an existing palliative care website based in Victoria, Australia; a pre-development survey (n = 197 scoping potential audiences and palliative care information needs; working parties conducting a needs analysis about necessary information content for a redeveloped website targeting health professionals and caregivers/patients; an iterative evaluation process involving users and experts; as well as a final evaluation survey (n = 166. Results Involving users in the identification of content and links for a palliative care website is time-consuming and requires initial resources, strong networking skills and commitment. However, user participation provided crucial information that led to the widened the scope of the website audience and guided the development and testing of the website. The needs analysis underpinning the project suggests that palliative care peak bodies need to address three distinct audiences (clinicians, allied health professionals as well as patients and their caregivers. Conclusion Web developers should pay close attention to the content, language, and accessibility needs of these groups. Given the substantial cost associated with the maintenance of authoritative health information sites, the paper proposes a more collaborative development in which users can be engaged in the definition of content to ensure relevance and responsiveness, and to eliminate unnecessary detail. Access to

  13. Enhancing the quality of nursing care in methadone substitute clinics using action research: a process evaluation

    NARCIS (Netherlands)

    Loth, Christien; Schippers, Gerard M.; Hart, Harm't; van de Wijngaart, Goof

    2007-01-01

    AIM: This paper is a report of a study to answer the research question: can participative action research help to halt the deterioration in methadone substitution treatment and develop new care strategies which are better geared toward the patients' needs? BACKGROUND: In the Netherlands, methadone

  14. Hearing the Silenced Voices of Underserved Women -The Role of Qualitative Research in Gynecologic and Reproductive Care

    Science.gov (United States)

    Lawson, Angela K.; Marsh, Erica E.

    2017-01-01

    Summary for Indexing In order to provide effective evidence-based health care to women, rigorous research that examines women’s lived experiences in their own voices in needed. However, clinical health research has often excluded the experiences of women and minority patient populations. Further, clinical research has often relied on quantitative research strategies; this provides an interesting but limited understanding of women’s health experiences and hinders the provision of effective patient-centered care. In this review, we define qualitative research and its unique contributions to research, and provide examples of how qualitative research has given insights into the reproductive health perspectives and behaviors of underserved women. PMID:28160888

  15. Immigrant Families, Children With Special Health Care Needs, and the Medical Home.

    Science.gov (United States)

    Kan, Kristin; Choi, Hwajung; Davis, Matthew

    2016-01-01

    Immigrant children in the United States historically experience lower-quality health care. Such disparities areconcerning for immigrant children with special health care needs (CSHCNs). Our study assesses the medical home presence for CSHCN by immigrant family type and evaluates which medical home components are associated with disparities. We used the 2011 National Survey of Children's Health, comparing the prevalence and odds of a parent-reported medical home and 5 specific medical home components by immigrant family types using bivariate and multivariate logistic regression. Foreign-born CSHCNs were less likely than CSHCNs with US-born parents to have a medical home (adjusted odds ratio = 0.40, 95% confidence interval 0.19-0.85). The adjusted prevalence of having a medical home was 28% among foreign-born CSHCNs (P special needs also had a lower odds of a medical home, compared with children with US-born parents (adjusted odds ratio = 0.62, 0.46-0.83). The medical home component most frequently absent for immigrant children without special needs and CSHCNs with a foreign-born parent was family-centered care. In contrast, foreign-born CSHCNs most often lacked care coordination (adjusted prevalence = 37% versus 56% for CSHCNs with US-born parents; P < .05). Disparities in medical home presence for CSHCNs appear to be exacerbated by immigrant family type. Efforts focused on improving family-centered care and care coordination may provide the greatest benefit for immigrant CSHCNs. Copyright © 2016 by the American Academy of Pediatrics.

  16. Empowering nurses in providing palliative care to cancer patients: Action research study

    Directory of Open Access Journals (Sweden)

    Fariba Taleghani

    2018-01-01

    Full Text Available Background: Chronic diseases such as cancer would lead to various health needs in patients and their families. To meet needs, developing new educational nursing courses is necessary. Therefore this study was conducted to empower nurses through designing and conducting short-term educational courses for training palliative care nurses. Materials and Methods: This study was a community-based action research which was conducted at Isfahan hospitals that provide services for cancer patients during 2015 at four stages (planning, acting, reflection, and evaluation. Participants (33 samples included nurses, head nurses, managers of nursing services, nursing professors and professors of oncology department. Data were gathered through individual and group interviews and analyzed using content analysis. Results: Data analysis resulted in 3 categories of "professional development of nursing in palliative care" which included subcategories of: knowledge-based performance and positive change in attitude, "obstacles to provide palliative care" with subcategories of: insufficient professional responsibility, insufficient ability in managing some of patients' symptoms and inappropriate interaction between nurses and physicians and "strategies for improving provision of palliative care" with subcategories of: improving the interactions between physicians and nurses, continuous trainings for palliative care and the necessity of developing palliative care in the country. Conclusions: To facilitate the process of providing palliative care to cancer patients, necessary actions and measures must be conducted including improvement of interaction between the members of health team, organizing continuing educational courses on palliative care and development of providing palliative care all over the country by managers of health centers.

  17. The need for pharmaceutical care in an intensive care unit at a teaching hospital in South Africa

    Directory of Open Access Journals (Sweden)

    N Shellack

    2014-11-01

    Full Text Available Background. The role of the pharmacist has evolved over the last 2 decades beyond traditional functions such as stock control and dispensing. Objectives. To describe the functions performed by a clinical pharmacist while based in a surgical and trauma intensive care unit of a teaching hospital. Methods. An operational research study that included indications of programme success was conducted. Interventions to assess therapy and achieve definite outcomes to satisfy patients’ medicine needs were documented for 51 patients over a study period of 8 weeks.Results. A total of 181 interventions were suggested by the pharmacist, with 127 (70% accepted and implemented by the medical and nursing staff of the unit. The most frequent interventions were related to: untreated medical conditions (15.5%, appropriate therapy or course (13.8%, investigations indicated or outstanding (12.2%, and inappropriate doses and dosing frequency (11%. Interventions were also made regularly to address system errors or non-compliance and factors hindering therapeutic effect. Of the 250 h the pharmacist spent in the ward, most time was used for pharmaceutical care (28% and ward rounds (21% with members of the multidisciplinary team.Conclusions. The study results demonstrated that a clinical pharmacist’s contribution to patient care at ward level resulted in improved monitoring of pharmacotherapy. Medicine-related problems were identified and addressed.

  18. Application of PKI in health care--needs, ambitions, prospects.

    Science.gov (United States)

    Suselj, Marjan; Marcun, Tomaz; Trcek, Denis; Kandus, Gorazd

    2003-01-01

    Through continual development and considerable investment over the past years, Slovenia has established an information infrastructure providing efficient data links between all the health care actors. This includes furnishing all the citizens and health workers with microprocessor cards--health insurance card and health professional card. These tools have significantly simplified different procedures in the health care and brought services closer to insured persons. The know-how and experiences gathered to day have given rise to vivid discussions of further development steps: introduction of new contents on the infrastructure in place and technological upgrading, in particular progressive incorporation of the PKI concept and thereby integration of card and network solutions to provide an efficient and secure communication environment. This paper outlines key perspectives of the future developments in this segment. With the volume of health care data communications through internet growing steeply, and with the paramount importance of patient--doctor trust and confidence, security tools and solutions in the health care are a critical need.

  19. Practices for caring in nursing: Brazilian research groups.

    Science.gov (United States)

    Erdmann, A L; de Andrade, S R; de Mello, A L Ferreira; Klock, P; do Nascimento, K C; Koerich, M Santos; Backes, D Stein

    2011-09-01

    The present study considers the production of knowledge and the interactions in the environment of research and their relationships in the system of caring in nursing and health. To elaborate a theoretical model of the organization of the practices used for caring, based on the experiences made by the research groups of administration and management in nursing, in Brazil. The study is based on grounded theory. Twelve leaders of research groups, working as professors in public universities in the south and the south-east of Brazil, distributed in sample groups, were interviewed. The core phenomenon 'research groups of administration and management in nursing: arrangements and interactions in the system of caring in nursing' was derived from the categories: conceptual bases and contexts of the research groups; experiencing interactions in the research groups; functionality of the research groups; and outputs of the research groups. The research groups are integrated in the system of caring in nursing. The activities of the Brazilian administration and management in nursing research groups are process oriented and in a process of constant renovation, socially relevant, operate in a complex scenario and contribute to the advancement of the organizations of the system of caring in nursing through strengthening the connection among academia, service and community. © 2011 The Authors. International Nursing Review © 2011 International Council of Nurses.

  20. Primary care research conducted in networks: getting down to business.

    Science.gov (United States)

    Mold, James W

    2012-01-01

    This seventh annual practice-based research theme issue of the Journal of the American Board of Family Medicine highlights primary care research conducted in practice-based research networks (PBRNs). The issue includes discussion of (1) theoretical and methodological research, (2) health care research (studies addressing primary care processes), (3) clinical research (studies addressing the impact of primary care on patients), and (4) health systems research (studies of health system issues impacting primary care including the quality improvement process). We had a noticeable increase in submissions from PBRN collaborations, that is, studies that involved multiple networks. As PBRNs cooperate to recruit larger and more diverse patient samples, greater generalizability and applicability of findings lead to improved primary care processes.

  1. Do health care needs of indigent Mexican-American, black, and white adolescents differ?

    Science.gov (United States)

    Fitzpatrick, S B; Fujii, C; Shragg, G P; Rice, L; Morgan, M; Felice, M E

    1990-03-01

    Few studies have addressed the specific health care needs of Mexican-American adolescents. This 2-year study assessed the routine health care needs and incidence of chronic illness among 279 Mexican-American, 233 white, and 333 black indigent adolescents enrolled in a vocational training program. Mexican-Americans were more likely to have a positive purified protein derivative tuberculin test and acne/eczema requiring treatment. Blacks were more likely to have incomplete immunizations and thyroid disorders, while whites were more likely to have musculoskeletal conditions and require family planning services and psychiatric intervention for mental health disorders. Although no difference in incidence of chronic illness was noted, our data suggests that routine health care needs may differ among indigent Mexican-American, white, and black adolescents.

  2. Children with Special Health Care Needs in CHIP: Access, Use, and Child and Family Outcomes.

    Science.gov (United States)

    Zickafoose, Joseph S; Smith, Kimberly V; Dye, Claire

    2015-01-01

    To assess how the Children's Health Insurance Program (CHIP) affects outcomes for children with special health care needs (CSHCN). We used data from a survey of parents of recent and established CHIP enrollees conducted from January 2012 through March 2013 as part of a congressionally mandated evaluation of CHIP. We identified CSHCN in the sample using the Child and Adolescent Health Measurement Initiative's CSHCN screener. We compared the health care experiences of established CHIP enrollees to the pre-enrollment experiences of previously uninsured and privately insured recent CHIP enrollees, controlling for observable characteristics. Parents of 4142 recent enrollees and 5518 established enrollees responded to the survey (response rates, 46% recent enrollees and 51% established enrollees). In the 10 survey states, about one-fourth of CHIP enrollees had a special health care need. Compared to being uninsured, parents of CSHCN who were established CHIP enrollees reported greater access to and use of medical and dental care, less difficulty meeting their child's health care needs, fewer unmet needs, and better dental health status for their child. Compared to having private insurance, parents of CSHCN who were established CHIP enrollees reported similar levels of access to and use of medical and dental care and unmet needs, and less difficulty meeting their child's health care needs. CHIP has significant benefits for eligible CSHCN and their families compared to being uninsured and appears to have some benefits compared to private insurance. Copyright © 2015 Academic Pediatric Association. All rights reserved.

  3. The Need for Cooperation in Cereal Research

    NARCIS (Netherlands)

    Kamp, J.W. van der

    2004-01-01

    The trends and needs in cereal research as discussed in 2003 AACC annual meeting are presented. The seminar identified the need of feeding a growing world population with less arable land and under more adverse agronomic conditions. An urgent need of eliminating mycotoxins and coeliac diseases to

  4. Distress, problems and supportive care needs of patients treated with auto- or allo-SCT.

    Science.gov (United States)

    Braamse, A M J; van Meijel, B; Visser, O; Huijgens, P C; Beekman, A T F; Dekker, J

    2014-02-01

    Hematological malignancies and treatment with hematopoietic SCT are known to affect patients' quality of life. The problem profile and care needs of this patient group need clarification, however. This study aimed to assess distress, problems and care needs after allo- or auto-SCT, and to identify risk factors for distress, problems or care needs. In this cross-sectional study, patients treated with allo-SCT or auto-SCT for hematological malignancies completed the Distress Thermometer and Problem List. Three patient groups were created: 0-1, 1-2.5 and 2.5-5.5 years after transplantation. After allo-SCT, distress and the number of problems tended to be lower with longer follow-up. After auto-SCT, distress was highest at 1-2.5 year(s). Patients mainly reported physical problems, followed by cognitive-emotional and practical problems. A minority reported care needs. Risk factors for distress as well as problems after allo-SCT included younger age, shorter time after transplantation and GVHD. A risk factor for distress as well as problems after auto-SCT was the presence of comorbid diseases. Up to 5 years after auto-SCT or allo-SCT, patients continue to experience distress and problems. Judged by prevalence, physical problems are first priority in supportive care, followed by cognitive-emotional and practical problems.

  5. Supportive care needs and psychological distress and/or quality of life in ambulatory advanced colorectal cancer patients receiving chemotherapy: a cross-sectional study.

    Science.gov (United States)

    Sakamoto, Nobuhiro; Takiguchi, Shuji; Komatsu, Hirokazu; Okuyama, Toru; Nakaguchi, Tomohiro; Kubota, Yosuke; Ito, Yoshinori; Sugano, Koji; Wada, Makoto; Akechi, Tatsuo

    2017-12-01

    Although currently many advanced colorectal cancer patients continuously receive chemotherapy, there are very few findings with regard to the supportive care needs of such patients. The purposes of this study were to investigate the patients' perceived needs and the association with psychological distress and/or quality of life, and to clarify the characteristics of patients with a high degree of unmet needs. Ambulatory colorectal cancer patients who were receiving chemotherapy were asked to complete the Short-Form Supportive Care Needs Survey questionnaire, which covers five domains of need (health system and information, psychological, physical, care and support, and sexuality needs), the Hospital Anxiety and Depression Scale and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire. Complete data were available for 100 patients. Almost all of the top 10 most common unmet needs belonged to the psychological domain. The patients' total needs were significantly associated with both psychological distress (r = 0.65, P quality of life (r = -0.38, P patients' needs and psychological distress and/or quality of life suggest that interventions that respond to patients' needs may be one possible strategy for ameliorating psychological distress and enhancing quality of life. Female patients' needs should be evaluated more carefully. © The Author 2017. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  6. Encouraging primary care research: evaluation of a one-year, doctoral clinical epidemiology research course.

    Science.gov (United States)

    Liira, Helena; Koskela, Tuomas; Thulesius, Hans; Pitkälä, Kaisu

    2016-01-01

    Research and PhDs are relatively rare in family medicine and primary care. To promote research, regular one-year research courses for primary care professionals with a focus on clinical epidemiology were started. This study explores the academic outcomes of the first four cohorts of research courses and surveys the participants' perspectives on the research course. An electronic survey was sent to the research course participants. All peer-reviewed scientific papers published by these students were retrieved by literature searches in PubMed. Primary care in Finland. A total of 46 research course participants who had finished the research courses between 2007 and 2012. Of the 46 participants 29 were physicians, eight nurses, three dentists, four physiotherapists, and two nutritionists. By the end of 2014, 28 of the 46 participants (61%) had published 79 papers indexed in PubMed and seven students (15%) had completed a PhD. The participants stated that the course taught them critical thinking, and provided basic research knowledge, inspiration, and fruitful networks for research. A one-year, multi-professional, clinical epidemiology based research course appeared to be successful in encouraging primary care research as measured by research publications and networking. Activating teaching methods, encouraging focus on own research planning, and support from peers and tutors helped the participants to embark on research projects that resulted in PhDs for 15% of the participants. Clinical research and PhDs are rare in primary care in Finland, which has consequences for the development of the discipline and for the availability of clinical lecturers at the universities. A clinical epidemiology oriented, one-year research course increased the activity in primary care research. Focus on own research planning and learning the challenges of research with peers appeared to enhance the success of a doctoral research course. A doctoral research course encouraged networking, and

  7. The psychological distress and care needs of mesothelioma patients and asbestos-exposed subjects: A systematic review of published studies.

    Science.gov (United States)

    Bonafede, Michela; Ghelli, Monica; Corfiati, Marisa; Rosa, Valentina; Guglielmucci, Fanny; Granieri, Antonella; Branchi, Claudia; Iavicoli, Sergio; Marinaccio, Alessandro

    2018-05-01

    The purpose of this study is to present the results of a systematic review of published research that focuses on psychological aspects of malignant mesothelioma patients and asbestos-exposed people. Our research includes primary studies published between 1980 and 2016, using information from the Cochrane Library, the Psychology Behavioral Sciences Collection, PsychINFO, PubMed, PubGet, PubPsych, and Scopus, in compliance with PRISMA guidelines. We identified 12 papers that investigated the psychological distress and care needs of mesothelioma patients, and nine papers for asbestos-exposed subjects. This paper highlights the paucity of studies on the psychological distress and care needs of mesothelioma patients and asbestos-exposed subjects. It confirms that malignant mesothelioma is associated with the physical, emotional, and social functioning of patients, while also suggesting that the risk of developing asbestos-related diseases among asbestos-exposed subjects is associated with high levels of psychological distress, despair, and mental health difficulties. © 2018 Wiley Periodicals, Inc.

  8. Qualitative Research in Palliative Care: Applications to Clinical Trials Work.

    Science.gov (United States)

    Lim, Christopher T; Tadmor, Avia; Fujisawa, Daisuke; MacDonald, James J; Gallagher, Emily R; Eusebio, Justin; Jackson, Vicki A; Temel, Jennifer S; Greer, Joseph A; Hagan, Teresa; Park, Elyse R

    2017-08-01

    While vast opportunities for using qualitative methods exist within palliative care research, few studies provide practical advice for researchers and clinicians as a roadmap to identify and utilize such opportunities. To provide palliative care clinicians and researchers descriptions of qualitative methodology applied to innovative research questions relative to palliative care research and define basic concepts in qualitative research. Body: We describe three qualitative projects as exemplars to describe major concepts in qualitative analysis of early palliative care: (1) a descriptive analysis of clinician documentation in the electronic health record, (2) a thematic content analysis of palliative care clinician focus groups, and (3) a framework analysis of audio-recorded encounters between patients and clinicians as part of a clinical trial. This study provides a foundation for undertaking qualitative research within palliative care and serves as a framework for use by other palliative care researchers interested in qualitative methodologies.

  9. Is Team-Based Primary Care Associated with Less Access Problems and Self-Reported Unmet Need in Canada?

    Science.gov (United States)

    Zygmunt, Austin; Asada, Yukiko; Burge, Frederick

    2017-10-01

    As in many jurisdictions, the delivery of primary care in Canada is being transformed from solo practice to team-based care. In Canada, team-based primary care involves general practitioners working with nurses or other health care providers, and it is expected to improve equity in access to care. This study examined whether team-based care is associated with fewer access problems and less unmet need and whether socioeconomic gradients in access problems and unmet need are smaller in team-based care than in non-team-based care. Data came from the 2008 Canadian Survey of Experiences with Primary Health Care (sample size: 10,858). We measured primary care type as team-based or non-team-based and socioeconomic status by income and education. We created four access problem variables and four unmet need variables (overall and three specific components). For each, we ran separate logistic regression models to examine their associations with primary care type. We examined socioeconomic gradients in access problems and unmet need stratified by primary care type. Primary care type had no statistically significant, independent associations with access problems or unmet need. Among those with non-team-based care, a statistically significant education gradient for overall access problems existed, whereas among those with team-based care, no statistically significant socioeconomic gradients existed.

  10. Assessing the Need for Higher Levels of Care Among Problem Gambling Outpatients.

    Science.gov (United States)

    Ledgerwood, David M; Arfken, Cynthia L

    2017-12-01

    Most treatment for gambling disorder is provided on an outpatient basis. Only a small number of jurisdictions in North America provide higher levels of gambling treatment, such as residential or intensive outpatient (IOP) care, despite the potential need for these services. Further, there appear to be few guidelines for determining appropriate level of gambling treatment. The aim of the present study was to assess the appropriateness of higher levels of problem gambling care among clients receiving outpatient treatment. Problem gamblers and their therapists independently completed questionnaires that assessed the need and desire for residential and IOP treatment. About 42% of problem gambling outpatients noted that they would be "probably" or "definitely" willing to attend residential treatment, and about half indicated they would be equally likely to attend IOP. Therapists recommended about a third of their clients as appropriate for higher levels of care. For both client and therapist assessments, there was a significant association between desire or recommendation for level of treatment and severity of gambling and co-occurring problems. Further, therapist recommendations for level of care were significantly associated with client willingness to attend higher levels of treatment. Our data reveal the potential need for higher levels of care for problem gambling, as evaluated by clients and their therapists. Policy implications for the funding of residential and IOP treatment are discussed.

  11. Action research and Care Work

    DEFF Research Database (Denmark)

    Andersen, John; Bilfeldt, Anette

    The paper is a about planning and empowerment in care work at public nursing homes and the role of action research. It is based on ongoing work in the “Center for Demokratisk Samfundsudvikling og Aktionsforskning” at Roskilde University and the transnational research network KATARSIS, which works...

  12. Child and adolescent experience of and satisfaction with psychiatric care: a critical review of the research literature.

    Science.gov (United States)

    Biering, P

    2010-02-01

    This review paper contributes to better understanding of child and adolescent perception of quality of psychiatric care and should therefore be of interests for those who are concerned with the development and improvement of psychiatric care. * The review shows that the concept of patient satisfaction in child and adolescent psychiatric care is still underdeveloped and that few valid instruments have been developed to measure the concept. * The review helps to clarify the concept of adolescent satisfaction with psychiatric care by indentifying the universal components of the concept. * The paper concludes that children's perception of quality of care differs from their parents' and that quality assessment of children and adolescents needs to be heeded. Abstract Users' perspectives ought to be a determining factor for assessing the quality of psychiatric care and hence their perspectives need to be thoroughly understood. There is a lack of comprehensive knowledge of how children and adolescents perceive the quality of their psychiatric care. Therefore, the purpose of this paper is to critically review and synthesize findings from research on youth experience and satisfaction with psychiatric care. The review finds that knowledge about youth perception of quality of care is scattered and that few researchers consider previous findings. There are few valid instruments to measure child and adolescent patient satisfaction and few studies have considered these users' perceptions. These few studies indicate that adolescents' satisfaction has three universal components: satisfaction with environment and the organization of services; with user-caregiver relationship; and with treatment outcome. However, instruments that only use these factors lack sensitivity, while instruments that measure specific components of services capture differences in satisfaction between user groups. The review shows that parents and children have different mental care needs, and that the

  13. Universities' expectations of pastoral care: trends, stressors, resource gaps and support needs for teaching staff.

    Science.gov (United States)

    Laws, Thomas A; Fiedler, Brenton A

    2012-10-01

    'emotion work' requiring a greater integration of resources that guide them toward more appropriate and timely student support. Staff require ongoing professional development on the nature of MH problems among students. There is a need for specific orientation programs that better define pastoral care and identify support services for staff and students. Universities need to focus on what is needed to create a well-being environment. Workload allocations must include 'emotion work', and mental health professionals must be employed to improve intervention and support not only for students but also for University staff. With better defined pastoral care roles, academics can more effectively balance their intrinsic and extrinsic motivations toward both personal and corporate objectives. Further research into the efficacy of university resourcing of programs and services is needed. Copyright © 2012 Elsevier Ltd. All rights reserved.

  14. Partnering for optimal respiratory home care: physicians working with respiratory therapists to optimally meet respiratory home care needs.

    Science.gov (United States)

    Spratt, G; Petty, T L

    2001-05-01

    The need for respiratory care services continues to increase, reimbursement for those services has decreased, and cost-containment measures have increased the frequency of home health care. Respiratory therapists are well qualified to provide home respiratory care, reduce misallocation of respiratory services, assess patient respiratory status, identify problems and needs, evaluate the effect of the home setting, educate the patient on proper equipment use, monitor patient response to and complications of therapy, monitor equipment functioning, monitor for appropriate infection control procedures, make recommendations for changes to therapy regimen, and adjust therapy under the direction of the physician. Teamwork benefits all parties and offers cost and time savings, improved data collection and communication, higher job satisfaction, and better patient monitoring, education, and quality of life. Respiratory therapists are positioned to optimize treatment efficacy, maximize patient compliance, and minimize hospitalizations among patients receiving respiratory home care.

  15. Receipt of Recommended Adolescent Vaccines Among Youth With Special Health Care Needs.

    Science.gov (United States)

    McRee, Annie-Laurie; Maslow, Gary R; Reiter, Paul L

    2017-05-01

    We examined vaccination coverage among youth with special health care needs (YSHCN) using data from parents of adolescents (11-17 years) who responded to a statewide survey in 2010-2012 (n = 2156). Using a validated screening tool, we identified 29% of adolescents as YSHCN. Weighted multivariable logistic regression assessed associations between special health care needs and receipt of tetanus booster, meningococcal, and human papillomavirus (HPV) vaccines. Only 12% of youth had received all 3 vaccines, with greater coverage for individual vaccines (tetanus booster, 91%; meningococcal, 32%; HPV, 26%). YSHCN had greater odds of HPV vaccination than other youth (33% vs 23%, OR = 1.70, 95% CI = 1.16-2.50) but vaccination coverage was similar ( P ≥ .05) for other outcomes. In subgroup analyses, HPV vaccination also differed depending on the number and type of special health care needs identified. Findings highlight low levels of vaccination overall and missed opportunities to administer recommended vaccines among all youth, including YSHCN.

  16. A service-learning project to eliminate barriers to oral care for children with special health care needs.

    Science.gov (United States)

    DeMattei, Ronda R; Allen, Jessica; Goss, Breanna

    2012-06-01

    Children with special health care needs face many barriers to oral care and are at high risk for oral disease. School nurses are in a unique position to promote oral wellness in this vulnerable population. Collaboration between school nurses and dental hygiene faculty resulted in the formation of a partnership between a university-based dental hygiene program and two special education districts in rural southern Illinois. Senior dental hygiene students participated in a school-based service-learning project that provided dental examinations, preventive services, and education to children with special health care needs. Evidence-based behavioral interventions were used to teach children to comply with oral procedures. School nurses mentored dental hygiene students in behavior management of children. Dental exams were provided to 234 children from four special education schools with the majority receiving cleanings and fluoride.

  17. Biomedical research leaders: report on needs, opportunities, difficulties, education and training, and evaluation.

    Science.gov (United States)

    Wilson, S H; Merkle, S; Brown, D; Moskowitz, J; Hurley, D; Brown, D; Bailey, B J; McClain, M; Misenhimer, M; Buckalew, J; Burks, T

    2000-12-01

    The National Association of Physicians for the Environment (NAPE) has assumed a leadership role in protecting environmental health in recent years. The Committee of Biomedical Research Leaders was convened at the recent NAPE Leadership Conference: Biomedical Research and the Environment held on 1--2 November 1999, at the National Institutes of Health, Bethesda, Maryland. This report summarizes the discussion of the committee and its recommendations. The charge to the committee was to raise and address issues that will promote and sustain environmental health, safety, and energy efficiency within the biomedical community. Leaders from every important research sector (industry laboratories, academic health centers and institutes, hospitals and care facilities, Federal laboratories, and community-based research facilities) were gathered in this committee to discuss issues relevant to promoting environmental health. The conference and this report focus on the themes of environmental stewardship, sustainable development and "best greening practices." Environmental stewardship, an emerging theme within and outside the biomedical community, symbolizes the effort to provide an integrated, synthesized, and concerted effort to protect the health of the environment in both the present and the future. The primary goal established by the committee is to promote environmentally responsible leadership in the biomedical research community. Key outcomes of the committee's discussion and deliberation were a) the need for a central organization to evaluate, promote, and oversee efforts in environmental stewardship; and b) immediate need to facilitate efficient information transfer relevant to protecting the global environment through a database/clearinghouse. Means to fulfill these needs are discussed in this report.

  18. Antenatal Care Strengthening in Jimma, Ethiopia: A Mixed-Method Needs Assessment

    Directory of Open Access Journals (Sweden)

    Sarah Fredsted Villadsen

    2014-01-01

    Full Text Available Objective. We assessed how health system priorities matched user expectations and what the needs for antenatal care (ANC strengthening were for improved maternal health in Jimma, Ethiopia. Methods. A questionnaire survey among all recent mothers in the study area was conducted to study the content of ANC and to identify the predictors of low ANC satisfaction. Further, a qualitative approach was applied to understand perceptions, practices, and policies of ANC. Results. There were no national guidelines for ANC in Ethiopia. Within the health system, the teaching of health professional students was given high priority, and that contributed to a lack of continuity and privacy. To the women, poor user-provider interaction was a serious concern hindering the trust in the health care providers. Further, the care provision was compromised by the inadequate laboratory facilities, unstructured health education, and lack of training of health professionals. Conclusions. Health system trials are needed to study the feasibility of ANC strengthening in the study area. Nationally and internationally, the leadership needs to be strengthened with supportive supervision geared towards building trust and mutual respect to protect maternal and infant health.

  19. Provision of Patient-Centered Transgender Care.

    Science.gov (United States)

    Selix, Nancy W; Rowniak, Stefan

    2016-11-01

    Transgender individuals have unique health care needs and experience health disparities. There is an increased need for transgender health care services and primary care for this underserved population. However, provision of appropriate health care services for transgender persons requires cultural competency and skill on the part of the health care provider, and providers need specific skills to address the needs of this population. A review of the literature was performed by accessing CINAHL, PsycINFO, and PubMed databases. Pertinent research was extracted and reviewed for relevance. References in these publications were reviewed to identify additional publications that address primary prevention, secondary prevention, and tertiary care of transgender individuals. Articles that include prevention, screening, and treatment of health problems of transgender persons were identified. Research on the health needs of the transgender population is limited. Whenever available, research findings that address this unique population should be incorporated into clinical practice. When research evidence is not available to address the unique needs of transgender individuals, research and clinical care guidelines from the general population may be applied for health screening and maintenance. This article provides information about primary care services for transgender individuals and seeks to improve awareness of the health disparities this underserved population experiences. Simple solutions to modify clinical settings to enhance care are provided. © 2016 by the American College of Nurse-Midwives.

  20. Restructuring graduate medical education to meet the health care needs of emirati citizens.

    Science.gov (United States)

    Abdel-Razig, Sawsan; Alameri, Hatem

    2013-06-01

    Many nations are struggling with the design, implementation, and ongoing improvement of health care systems to meet the needs of their citizens. In the United Arab Emirates, a small nation with vast wealth, the lives of average citizens have evolved from a harsh, nomadic existence to enjoyment of the comforts of modern life. Substantial progress has been made in the provision of education, housing, health, employment, and other forms of social advancement. Having covered these basic needs, the government of Abu Dhabi, United Arab Emirates, is responding to the challenge of developing a comprehensive health system to serve the needs of its citizens, including restructuring the nation's graduate medical education (GME) system. We describe how Abu Dhabi is establishing GME policies and infrastructure to develop and support a comprehensive health care system, while also being responsive to population health needs. We review recent progress in developing a systematic approach for developing GME infrastructure in this small emirate, and discuss how the process of designing a GME system to meet the needs of Emirati citizens has benefited from the experience of "Western" nations. We also examine the challenges we encountered in this process and the solutions adopted, adapted, or specifically developed to meet local needs. We conclude by highlighting how our experience "at the GME drawing board" reflects the challenges encountered by scholars, administrators, and policymakers in nations around the world as they seek to coordinate health care and GME resources to ensure care for populations.

  1. Construction research needs in Europe

    DEFF Research Database (Denmark)

    1991-01-01

    fælles europæisk forsknings- og udviklingsstrategi for byggesektoren har det europæiske netværk af byggeforskningsinstitutter, ENBRI, sammenfattet de nationale forskningstemaer samt analyseret perspektiver og behov. Dette materiale er anvendt som diskussionsoplæg ved symposiet Construction research needs...

  2. Using the Knowledge Base of Health Services Research to Redefine Health Care Systems.

    Science.gov (United States)

    Brook, Robert H; Vaiana, Mary E

    2015-10-01

    This Perspective discusses 12 key facts derived from 50 years of health services research and argues that this knowledge base can stimulate innovative thinking about how to make health care systems safer, more efficient, more cost effective, and more patient centered, even as they respond to the needs of diverse communities.

  3. The urgent need for clinical, diagnostic, and operational research for management of Buruli ulcer in Africa.

    Science.gov (United States)

    O'Brien, Daniel P; Comte, Eric; Serafini, Micaela; Ehounou, Geneviève; Antierens, Annick; Vuagnat, Hubert; Christinet, Vanessa; Hamani, Mitima D; du Cros, Philipp

    2014-05-01

    Despite great advances in the diagnosis and treatment of Buruli ulcer, it is one of the least studied major neglected tropical diseases. In Africa, major constraints in the management of Buruli ulcer relate to diagnosis and treatment, and accessibility, feasibility, and delivery of services. In this Personal View, we outline key areas for clinical, diagnostic, and operational research on this disease in Africa and propose a research agenda that aims to advance the management of Buruli ulcer in Africa. A model of care is needed to increase early case detection, to diagnose the disease accurately, to simplify and improve treatment, to reduce side-effects of treatment, to deal with populations with HIV and tuberculosis appropriately, to decentralise care, and to scale up coverage in populations at risk. This approach will require commitment and support to strategically implement research by national Buruli ulcer programmes and international technical and donor organisations, combined with adaptations in programme design and advocacy. A critical next step is to build consensus for a research agenda with WHO and relevant groups experienced in Buruli ulcer care or related diseases, and we call on on them to help to turn this agenda into reality. Copyright © 2014 Elsevier Ltd. All rights reserved.

  4. The contribution of behavioural science to primary care research: development and evaluation of behaviour change interventions.

    Science.gov (United States)

    Sutton, Stephen

    2011-10-01

    Behavioural science is concerned with predicting, explaining and changing behaviour. Taking a personal perspective, this article aims to show how behavioural science can contribute to primary care research, specifically in relation to the development and evaluation of interventions to change behaviour. After discussing the definition and measurement of behaviour, the principle of compatibility and theories of behaviour change, the article outlines two examples of behaviour change trials (one on medication adherence and the other on physical activity), which were part of a research programme on prevention of chronic disease and its consequences. The examples demonstrate how, in a multidisciplinary context, behavioural science can contribute to primary care research in several important ways, including posing relevant research questions, defining the target behaviour, understanding the psychological determinants of behaviour, developing behaviour change interventions and selection or development of measures. The article concludes with a number of recommendations: (i) whether the aim is prediction, explanation or change, defining the target behaviour is a crucial first step; (ii) interventions should be explicitly based on theories that specify the factors that need to be changed in order to produce the desired change in behaviour; (iii) intervention developers need to be aware of the differences between different theories and select a theory only after careful consideration of the alternatives assessed against relevant criteria; and (iv) developers need to be aware that interventions can never be entirely theory based.

  5. Families with special needs children: family health, functioning, and care burden.

    Science.gov (United States)

    Caicedo, Carmen

    2014-01-01

    There are 11.2 million children with special health care needs in the United States or one in five households caring for a special needs child. A small group of children who need continuous medical, nursing, therapeutic services that enable them to survive is growing in numbers. This study examined physical health (physical functioning), mental health (emotional, social, and cognitive functioning; communication; and worry), family functioning (daily activities, family relationships), and care burden (caregiver employment, caregiving time, travel time, health-related out-of-pocket expenditures) of parent caregivers for medically complex, medical technology-dependent children. Data were collected once a month for 5 months on 84 parents recruited in South Florida using the Pediatric Quality of Life Family Impact Module. Physically, parents were tired when they woke up: too tired to do the things they liked to do and with little energy for chores or social activities. Mentally, they were frustrated, anxious, and angry; felt helpless and hopeless; had cognitive problems remembering and focusing on tasks; were worried about the child's medications, treatments, side effects; and were anxious about child's future and effect of the child's condition on other family members. Socially, they felt isolated and that people did not understand their family situation; they found it hard to talk with others including physicians and nurses. Average weekly hours of direct care was 33.0 (SD = 30.4 hours); average monthly out-of-pocket expenditures was $348.78 (SD = $623.34). It is essential to assess parents' physical and mental health and functioning and to provide interventions to improve health and functioning for both the parents and the children for whom they are caring. © The Author(s) 2014.

  6. Cancer survivors and their partners: the assessment of unmet supportive care needs

    International Nuclear Information System (INIS)

    Smith, K.; Pendlebury, S.; Butow, P.; Hobbs, K.; Wain, G.

    2003-01-01

    Our understanding of unmet supportive care needs of cancer survivors and their partners is limited. Most studies have focused on needs of patients undergoing treatment and on Quality of life or patient satisfaction. For the purpose of this research, cancer survivors are defined as persons who received a cancer diagnosis at least one year previously and are disease free. The aim of this study is to develop measures to assess unmet needs in survivors and their partners. After developing the questionnaire items it was piloted for validity in a wide sample of cancer patients from the radiation oncology department. 105 patients, all women, 101 with breast cancer and 40 partners participated. Psychological morbidity of depression and anxiety was recorded and was low. Quality of life for both survivors and partners was close to the US population mean. For patients top 4 unmet needs was 1. Anxiety about cancer returning (35%), current information (21%), understandable information (28%), ongoing case manager (25%). Unmet needs for partners were 1. Need to know all the doctors were communication (3.2%), need for local health services (2.8%), current information (2.1%) and help with managing concerns about the cancer returning (2.1%). 73% of partners reported at least one positive outcome from their partner's experience, significantly more than the survivors. In conclusion, interim analysis of the questionnaire reveals validity. Survivors report ongoing high levels of unmet needs 3-9 years after cancer diagnosis ( 30%). Less than 4% of partners report such unmet needs. There is significant correlation between needs of partners and survivors, many of which relate to issues of ongoing support and information delivery

  7. Industry-identified combustion research needs: Special study

    Energy Technology Data Exchange (ETDEWEB)

    Keller, J.G.; Soelberg, N.R.; Kessinger, G.F.

    1995-11-01

    This report discusses the development and demonstration of innovative combustion technologies that improve energy conservation and environmental practices in the US industrial sector. The report includes recommendations by industry on R&D needed to resolve current combustion-related problems. Both fundamental and applied R&D needs are presented. The report assesses combustion needs and suggests research ideas for seven major industries, which consume about 78% of all energy used by industry. Included are the glass, pulp and paper, refinery, steel, metal casting, chemicals, and aluminum industries. Information has been collected from manufacturers, industrial operators, trade organizations, and various funding organizations and has been supplemented with expertise at the Idaho National Engineering Laboratory to develop a list of suggested research and development needed for each of the seven industries.

  8. A short form of the neonatal intensive care unit family needs inventory

    Directory of Open Access Journals (Sweden)

    Elisabete Alves

    2016-01-01

    Conclusions: The Short Form of the NICU Family Needs Inventory is a brief, simple, and valid instrument with a high degree of reliability. Further studies are needed to explore associations with practices of family‐centered care.

  9. Discrimination and resilience and the needs of people who identify as Transgender: A narrative review of quantitative research studies.

    Science.gov (United States)

    McCann, Edward; Brown, Michael

    2017-12-01

    To examine discrimination and resilience experiences of people who identify as transgender and establish potential health service responses. People who identify as transgender face many challenges in society in terms of the knowledge, understanding and acceptance of a person's gender identity. A narrative review of quantitative empirical research. A comprehensive search of CINAHL, MEDLINE, PsycINFO and Sociological Abstracts electronic databases from 2006-2016 was conducted. The search yielded 1,478 papers and following the application of rigorous inclusion and exclusion criteria a total of 19 papers were included in the review. The findings reveal that there is a need to ensure that the needs of transgender people are represented, fully integrated and clearly linked to outcomes that improve their health and quality of life. Discrimination experiences can result in poorer health outcomes; however, many people have developed resilience and positive coping strategies. Nurses need to recognise and respond appropriately to the care and treatment needs of this population. Comprehensive nursing assessments and plans of care that encompass all aspects of the person should be in place supported by clear policy guidelines and evidence-based research. The education requirements of practitioners are outlined. © 2017 John Wiley & Sons Ltd.

  10. Caring for the brain tumor patient: family caregiver burden and unmet needs.

    Science.gov (United States)

    Schubart, Jane R; Kinzie, Mable B; Farace, Elana

    2008-02-01

    The rapid onset and progression of a brain tumor, cognitive and behavioral changes, and uncertainty surrounding prognosis are issues well known to health practitioners in neuro-oncology. We studied the specific challenges that family caregivers face when caring for patients experiencing the significant neurocognitive and neurobehavioral disorders associated with brain tumors. We selected 25 family caregivers of adult brain tumor patients to represent the brain tumor illness trajectory (crisis, chronic, and terminal phases). Interviews documented caregiving tasks and decision-making and information and support needs. Themes were permitted to emerge from the data in qualitative analysis. We found that the family caregivers in this study provided extraordinary uncompensated care involving significant amounts of time and energy for months or years and requiring the performance of tasks that were often physically, emotionally, socially, or financially demanding. They were constantly challenged to solve problems and make decisions as care needs changed, yet they felt untrained and unprepared as they struggled to adjust to new roles and responsibilities. Because the focus was on the patient, their own needs were neglected. Because caregiver information needs are emergent, they are not always known at the time of a clinic visit. Physicians are frequently unable to address caregiver questions, a situation compounded by time constraints and cultural barriers. We provide specific recommendations for (1) improving the delivery of information; (2) enhancing communication among patients, families, and health care providers; and (3) providing psychosocial support for family caregivers.

  11. Exploring Integration of Care for Children Living with Complex Care Needs across the European Union and European Economic Area.

    Science.gov (United States)

    Brenner, Maria; O'Shea, Miriam; J Larkin, Philip; Kamionka, Stine Lundstroem; Berry, Jay; Hiscock, Harriet; Rigby, Michael; Blair, Mitch

    2017-04-24

    The aim of this paper is to report on the development of surveys to explore integration of care for children living with complex care needs across the European Union (EU) and European Economic Area (EEA). Each survey consists of a vignette and questions adapted from the Standards for Systems of Care for Children and Youth with Special Health Care Needs and the Eurobarometer Survey . A Country Agent in each country, a local expert in child health services, will obtain data from indigenous sources. We identified 'in-principle' complex problems and adapted surveys to capture care integration. We expect to get rich data to understand perceptions and to inform actions for a number of complex health issues. The study has the potential to make a wide contribution to individual countries of the EU/EEA to understand their own integration of services mapped against responses from other member states. Early results are expected in Spring 2017.

  12. The research agenda for trauma critical care.

    Science.gov (United States)

    Asehnoune, Karim; Balogh, Zsolt; Citerio, Giuseppe; Cap, Andre; Billiar, Timothy; Stocchetti, Nino; Cohen, Mitchell J; Pelosi, Paolo; Curry, Nicola; Gaarder, Christine; Gruen, Russell; Holcomb, John; Hunt, Beverley J; Juffermans, Nicole P; Maegele, Mark; Midwinter, Mark; Moore, Frederick A; O'Dwyer, Michael; Pittet, Jean-François; Schöchl, Herbert; Schreiber, Martin; Spinella, Philip C; Stanworth, Simon; Winfield, Robert; Brohi, Karim

    2017-09-01

    In this research agenda on the acute and critical care management of trauma patients, we concentrate on the major factors leading to death, namely haemorrhage and traumatic brain injury (TBI). In haemostasis biology, the results of randomised controlled trials have led to the therapeutic focus moving away from the augmentation of coagulation factors (such as recombinant factor VIIa) and towards fibrinogen supplementation and administration of antifibrinolytics such as tranexamic acid. Novel diagnostic techniques need to be evaluated to determine whether an individualised precision approach is superior to current empirical practice. The timing and efficacy of platelet transfusions remain in question, while new blood products need to be developed and evaluated, including whole blood variants, lyophilised products and novel red cell storage modalities. The current cornerstones of TBI management are intracranial pressure control, maintenance of cerebral perfusion pressure and avoidance of secondary insults (such as hypotension, hypoxaemia, hyperglycaemia and pyrexia). Therapeutic hypothermia and decompressive craniectomy are controversial therapies. Further research into these strategies should focus on identifying which subgroups of patients may benefit from these interventions. Prediction of the long-term outcome early after TBI remains challenging. Early magnetic resonance imaging has recently been evaluated for predicting the long-term outcome in mild and severe TBI. Novel biomarkers may also help in outcome prediction and may predict chronic neurological symptoms. For trauma in general, rehabilitation is complex and multidimensional, and the optimal timing for commencement of rehabilitation needs investigation. We propose priority areas for clinical trials in the next 10 years.

  13. In their own words: the value of qualitative research to improve the care of children with chronic kidney disease.

    Science.gov (United States)

    Hanson, Camilla S; Craig, Jonathan C; Tong, Allison

    2017-09-01

    Patient- and family-centered care is hailed as a hallmark of high-quality pediatric care. This partnership between patients, families and their healthcare providers is central to caring for children with chronic kidney disease (CKD), given the long-term and profound impact of the disease and its treatment on the development and quality of life of these children. This paradigm hinges on a comprehensive and detailed understanding of the needs, beliefs and values of children with CKD and their families. However, their perspectives may remain undisclosed during time-limited clinical consultations and because of beliefs that if they did disclose their concerns, their care would be jeopardized. Qualitative research provides an avenue for children and families to articulate their perspectives and experiences and thereby to generate relevant, in-depth and often compelling insights to inform care. Yet, qualitative studies remain sparse in biomedical journals. Increasing both our awareness of the role of qualitative research in improving care and outcomes for children and adolescents with CKD and our understanding of the conduct and rigor of qualitative studies is required. This article will outline how qualitative research can generate relevant evidence to inform practice and policy in children with CKD, provide an overview of qualitative methods and introduce a framework to appraise qualitative research. More evidence derived from qualitative research is needed to inform shared decision-making and the development of interventions and policies that address the preferences and priorities of children with CKD and their families. Ultimately, this strategy may help to improve the outcomes that they regard as critical to their care.

  14. Which Children Are Not Getting Their Needs for Therapy or Mobility Aids Met? Data From the 2009-2010 National Survey of Children With Special Health Care Needs.

    Science.gov (United States)

    McManus, Beth M; Prosser, Laura A; Gannotti, Mary E

    2016-02-01

    Pediatric rehabilitation therapy services and mobility aids have an important role in the health of children with special health care needs, and the Affordable Care Act (ACA) may increase coverage for these needs. Identifying the prevalence of and factors associated with therapy and mobility aid needs and unmet needs prior to the full implementation of the ACA will be useful for future evaluation of its impact. The purpose of this study was to identify the prevalence of and factors associated with caregiver perceived needs and unmet needs for therapy or mobility aids among children with special health care needs living in the United States. A cross-sectional, descriptive, multivariate analysis was conducted. The 2009-2010 National Survey of Children With Special Health Care Needs was used to identify a nationally representative sample of children with special health care needs with needs for therapy (weighted n=2,603,605) or mobility aids (weighted n=437,971). Odds of having unmet needs associated with child and family characteristics were estimated. Nearly 1 in 5 children with therapy needs had unmet needs, and nearly 1 in 10 children with mobility aid needs had unmet needs. Unmet needs were most strongly associated with how frequently the condition affected function and being uninsured in the previous year. Data were caregiver reported and not verified by clinical assessment. Survey data grouped physical therapy, occupational therapy, and speech therapy; analysis was not discipline specific. This evidence serves as a baseline about the future impact of the ACA. Pediatric rehabilitation professionals should be aware that children with special health care needs whose condition more frequently affects function and who have insurance discontinuity may need more support to meet therapy or mobility aid needs. © 2016 American Physical Therapy Association.

  15. The motivational needs of primary health care nurses to acquire power as leaders in a mine clinic setting

    Directory of Open Access Journals (Sweden)

    Karien Jooste

    2017-10-01

    Full Text Available Motivation is a process that influences and directs behaviour in order to satisfy a need. It links with goal 3 of the sustainable development goals that focus on ensuring healthy lives and promoting well-being at all ages. Motivation of nurses is important in the primary health care environment of, for instance, mine settings; since low levels of motivation among Primary Health Care (PHC nurses could have a negative effect on the achievement of high standards in health service delivery. The study was conducted within the theoretical framework of McClelland's Acquired Motivation Theory which consists of three basic needs, – the need for achievement, the need for power, and the need for affiliation. One of the research questions posed was “What are the motivational needs of PHC nurses to acquire power in the workplace at mine clinic settings?” A quantitative, explorative, descriptive design was followed. The accessible population in this study was PHC nurses (N = 30 working at 13 mine clinics, that also served as the total sample. A 7 point Likert scale was used in a self-administered structured questionnaire that was developed from a literature review. Ethical considerations were adhered to and respondents gave written informed consent. Data was analysed by using descriptive and inferential statistics. TheManne Whitney test compared the mean ranks and a p-value of p < 0.05 was indicative of a significant difference between male and female groups. Validity and reliability principles were applied during the entire research process. The results indicated that PHC nurses needed acknowledgement, organisational responsibility, strategic planning and promotion, as well as support. Significant differences between gender were not found in relation to the need to acquire power.

  16. Capability and dependency in the Newcastle 85+ cohort study. Projections of future care needs.

    Science.gov (United States)

    Jagger, Carol; Collerton, Joanna C; Davies, Karen; Kingston, Andrew; Robinson, Louise A; Eccles, Martin P; von Zglinicki, Thomas; Martin-Ruiz, Carmen; James, Oliver F W; Kirkwood, Tom B L; Bond, John

    2011-05-04

    Little is known of the capabilities of the oldest old, the fastest growing age group in the population. We aimed to estimate capability and dependency in a cohort of 85 year olds and to project future demand for care. Structured interviews at age 85 with 841 people born in 1921 and living in Newcastle and North Tyneside, UK who were permanently registered with participating general practices. Measures of capability included were self-reported activities of daily living (ADL), timed up and go test (TUG), standardised mini-mental state examination (SMMSE), and assessment of urinary continence in order to classify interval-need dependency. To project future demand for care the proportion needing 24-hour care was applied to the 2008 England and Wales population projections of those aged 80 years and over by gender. Of participants, 62% (522/841) were women, 77% (651/841) lived in standard housing, 13% (106/841) in sheltered housing and 10% (84/841) in a care home. Overall, 20% (165/841) reported no difficulty with any of the ADLs. Men were more capable in performing ADLs and more independent than women. TUG validated self-reported ADLs. When classified by 'interval of need' 41% (332/810) were independent, 39% (317/810) required help less often than daily, 12% (94/810) required help at regular times of the day and 8% (67/810) required 24-hour care. Of care-home residents, 94% (77/82) required daily help or 24-hour care. Future need for 24-hour care for people aged 80 years or over in England and Wales is projected to increase by 82% from 2010 to 2030 with a demand for 630,000 care-home places by 2030. This analysis highlights the diversity of capability and levels of dependency in this cohort. A remarkably high proportion remain independent, particularly men. However a significant proportion of this population require 24-hour care at home or in care homes. Projections for the next 20 years suggest substantial increases in the number requiring 24-hour care due to

  17. Participation needs of older adults having disabilities and receiving home care: met needs mainly concern daily activities, while unmet needs mostly involve social activities.

    Science.gov (United States)

    Turcotte, Pier-Luc; Larivière, Nadine; Desrosiers, Johanne; Voyer, Philippe; Champoux, Nathalie; Carbonneau, Hélène; Carrier, Annie; Levasseur, Mélanie

    2015-08-01

    Participation is a key determinant of successful aging and enables older adults to stay in their homes and be integrated into the community. Assessing participation needs involves identifying restrictions in the accomplishment of daily and social activities. Although meeting participation needs involves older adults, their caregivers and healthcare providers, little is known about their respective viewpoints. This study thus explored the participation needs of older adults having disabilities as perceived by the older adults themselves, their caregivers and healthcare providers. A qualitative multiple case study consisted of conducting 33 semi-structured interviews in eleven triads, each composed of an older adult, his/her caregiver and a healthcare provider recruited in a Health and Social Services Centre (HSSC) in Québec, Canada. Interview transcripts and reviews of clinical records were analyzed using content analysis and descriptive statistics based on thematic saliency analysis methods. Aged 66 to 88 years, five older adults had physical disabilities, five had mild cognitive impairment and one had psychological problems, leading to moderate to severe functional decline. Caregivers and healthcare providers were mainly women, respectively retired spouses and various professionals with four to 32 years of clinical experience. Participation needs reported by each triad included all domains of participation. Needs related to daily activities, such as personal care, nutrition, and housing, were generally met. Regarding social activities, few needs were met by various resources in the community and were generally limited to personal responsibilities, including making decisions and managing budgets, and some community life activities, such as going shopping. Unmet needs were mainly related to social activities, involving leisure, other community life activities and interpersonal relationships, and some daily activities, including fitness and mobility. This study

  18. Motivational techniques to improve self-care in hemophilia: the need to support autonomy in children.

    Science.gov (United States)

    Bérubé, Sarah; Mouillard, Florine; Amesse, Claudine; Sultan, Serge

    2016-01-11

    In pediatric hemophilia, caregivers are facing unique challenges to adherence and self-care in children and adolescents with hemophilia. Hemophilia treatment requires adequate prophylaxis and on-demand treatment, as well as a clear behavioral strategy to limit risk-taking in terms of physical exercise and diet. Medication adherence rates of hemophilia patients have been reported to decrease during late childhood and adolescence. In the developing child, moving safely from parent-care to self-care is one of the greatest challenges of integrative care within this domain. There is a clear need for initiatives designed to increase an individual's motivation for treatment and self-care activities. Among motivational approaches, the self-determination perspective offers a useful framework to explain how the transition to self-care can be facilitated. We discuss how motivation regarding hemophilia treatment may be increased through parental autonomy support and we offer examples of applied communication techniques to facilitate autonomy-supportive caregiving. Although it has not yet been tested in the context of hemophilia, these communication techniques could potentially help caregivers promote adherence and self-care in children. Confronted by unique challenges to adherence and self-care, caregivers of children with hemophilia should move from an exclusive focus on illness-management education to an integrative strategy, including motivation-enhancing communication. The self-determination perspective provides important proximal objectives (e.g. autonomy support) to maintain optimal adherence in adolescents as they move from parent-care to self-care. Future research initiatives should address the practice of these communication techniques and evaluate them in the context of hemophilia.

  19. Care of preterm infants: programs of research and their relationship to developmental science.

    Science.gov (United States)

    Holditch-Davis, Diane; Black, Beth Perry

    2003-01-01

    The purpose of this review was to examine the topics covered in current programs of nursing research on the care of the preterm infant and to determine the extent to which this research is informed by developmental science. A researcher was considered to have a current program of research if he or she had at least five publications published since 1990 and was the first author on at least three of them. The infants in a study could be any age from birth throughout childhood; studies focusing on parenting, nursing, or other populations of infants were not included. Seventeen nurse researchers had current programs of research in this area. These programs had four themes. Those of Becker, Evans, Pridham, Shiao, and Zahr focused on infant responses to the neonatal intensive care unit (NICU) environment and treatments. Franck, Johnston, and Stevens focused on pain management. Harrison, Ludington-Hoe, and White-Traut's research focused on infant stimulation. Holditch-Davis, McCain, McGrath, Medoff-Cooper, Schraeder, and Youngblut studied infant behavior and development. These research programs had many strengths, including strong interdisciplinary focus and clinical relevance. However, additional emphasis is needed on the care of the critically ill infant. Also, despite the fact that the preterm infant's neurological system develops rapidly over the first year, only three of these researchers used a developmental science perspective. Only research on infant behavior and development focused on the developmental changes that the infants were experiencing. Most of the studies were longitudinal, but many did not use statistics appropriate for identifying stability and change over time. The response of individual infants and the broader ecological context as evidenced by factors such as gender, ethnic group, culture, and intergenerational effects were rarely examined. Thus research on the care of preterm infants could be expanded if the developmental science perspective

  20. Perceived need for care and mental health service utilization among college students with suicidal ideation.

    Science.gov (United States)

    Nam, Boyoung; Wilcox, Holly C; Hilimire, Matthew; DeVylder, Jordan E

    2018-01-31

    This study aimed to identify correlates of service utilization and perceived need for care among college students with suicidal ideation. Respondents were recruited from introductory psychology courses at an undergraduate college during the Fall 2014 semester. Independent correlates of (1) mental health service utilization, (2) self-perceived need, and (3) other-perceived need for mental health services among college students (N = 190) with suicidal ideation were identified. Service utilization was associated with need for care as perceived by others. Perceived need for care by others was associated with suicidal ideation intensity and suicide attempt history. Perceived need by the respondents themselves was correlated with depression severity, sex, and race but was not independently associated with actual service utilization. Perceived need by others was the sole significant correlate of service utilization, suggesting it is an important target for public health interventions aimed at facilitating pathways into mental health treatment.

  1. Bursaries, writing grants and fellowships: a strategy to develop research capacity in primary health care

    Directory of Open Access Journals (Sweden)

    Farmer Elizabeth A

    2007-04-01

    Full Text Available Abstract Background General practitioners and other primary health care professionals are often the first point of contact for patients requiring health care. Identifying, understanding and linking current evidence to best practice can be challenging and requires at least a basic understanding of research principles and methodologies. However, not all primary health care professionals are trained in research or have research experience. With the aim of enhancing research skills and developing a research culture in primary health care, University Departments of General Practice and Rural Health have been supported since 2000 by the Australian Government funded 'Primary Health Care Research Evaluation and Development (PHCRED Strategy'. A small grant funding scheme to support primary health care practitioners was implemented through the PHCRED program at Flinders University in South Australia between 2002 and 2005. The scheme incorporated academic mentors and three types of funding support: bursaries, writing grants and research fellowships. This article describes outcomes of the funding scheme and contributes to the debate surrounding the effectiveness of funding schemes as a means of building research capacity. Methods Funding recipients who had completed their research were invited to participate in a semi-structured 40-minute telephone interview. Feedback was sought on acquisition of research skills, publication outcomes, development of research capacity, confidence and interest in research, and perception of research. Data were also collected on demographics, research topics, and time needed to complete planned activities. Results The funding scheme supported 24 bursaries, 11 writing grants, and three research fellows. Nearly half (47% of all grant recipients were allied health professionals, followed by general practitioners (21%. The majority (70% were novice and early career researchers. Eighty-nine percent of the grant recipients were

  2. Nurses’ Empowerment in Self-Care Education to Stroke Patients: An Action Research Study

    Directory of Open Access Journals (Sweden)

    Zahra Aslani

    2016-10-01

    Full Text Available Background: Self-care needs are major problems among stroke patients. Nurses can support them through interventions such as education, a change in their attitude and emphasis on their remaining abilities. However, research has shown some weak points in the quality of care given to these patients. So the aim of this study was to improve the nurses’ practice in self-care education to stroke patients. Methods: This is a participatory action research, conducted in internal neurology ward of Al-Zahra hospital in Isfahan, Iran during 2013-2014 in five stages of diagnosis, planning, action, reflection and evaluation. Participants comprised 27 nursing personnel including staff nurses, matrons, educational supervisors and the staff in charge of Nurse Educators’ Al_Zahra Role Expansion Action Research (NEAREAR project. In the evaluation stage, data were collected from five personal interviews and two focus group discussions and analyzed by qualitative content analysis. Results: The findings of evaluation phase showed that during action research, approaching the nurses’ empowerment in self-care education to stroke patients has been set in motion. The nursing practice improvement, knowledge based practice, nurses’ attitude change, ability to respond against routinization, and motivation promotion emphasize the success of change process. Facilitators and barriers of educating patients are acknowledged by the participants as a factor influencing the continuation of change. Conclusions: The lack of nurses’ educating performance skills was overcome using action research and changes were made to improve the performance of nurses.

  3. The irreducible needs of children for development: a frame of reference to health care

    Directory of Open Access Journals (Sweden)

    Maria De La Ó Ramallo Veríssimo

    2018-03-01

    Full Text Available ABSTRACT A comprehensive health care to children implies in caring for their development, by perceiving the needs based on a suitable reference to children’s specificities. This theoretical study aimed to analyze the “irreducible needs of children” frame of reference, based on a child development theory. We performed a comparative analysis between the contents of children’s irreducible needs and the components of the Bioecological Theory of Human Development. An extensive correspondence was verified among the components of the Bioecological Theory and the following essential needs: ongoing nurturing relationships; experiences tailored to individual differences; developmentally appropriate experiences; limit setting, structure and expectations; stable, supportive communities and cultural continuity. The need for physical protection, safety, and regulation is not explicit in the elements of the theory, although it is also verified in their definitions. We concluded that the irreducible needs’ reference can support nurses in health care and in child development promotion.

  4. Telemedicine in Neonatal Home Care: Identifying Parental Needs Through Participatory Design.

    Science.gov (United States)

    Garne, Kristina; Brødsgaard, Anne; Zachariassen, Gitte; Clemensen, Jane

    2016-07-08

    For the majority of preterm infants, the last weeks of hospital admission mainly concerns tube feeding and establishment of breastfeeding. Neonatal home care (NH) was developed to allow infants to remain at home for tube feeding and establishment of breastfeeding with regular home visits from neonatal nurses. For hospitals covering large regions, home visits may be challenging, time consuming, and expensive and alternative approaches must be explored. To identify parental needs when wanting to provide neonatal home care supported by telemedicine. The study used participatory design and qualitative methods. Data were collected from observational studies, individual interviews, and focus group interviews. Two neonatal units participated. One unit was experienced in providing neonatal home care with home visits, and the other planned to offer neonatal home care with telemedicine support. A total of 9 parents with preterm infants assigned to a neonatal home care program and 10 parents with preterm infants admitted to a neonatal unit participated in individual interviews and focus group interviews, respectively. Three overall themes were identified: being a family, parent self-efficacy, and nurse-provided security. Parents expressed desire for the following: (1) a telemedicine device to serve as a "bell cord" to the neonatal unit, giving 24-hour access to nurses, (2) video-conferencing to provide security at home, (3) timely written email communication with the neonatal unit, and (4) an online knowledge base on preterm infant care, breastfeeding, and nutrition. Our findings highlight the importance of neonatal home care. NH provides parents with a feeling of being a family, supports their self-efficacy, and gives them a feeling of security when combined with nursing guidance. Parents did not request hands-on support for infant care, but instead expressed a need for communication and guidance, which could be met using telemedicine.

  5. School Health Services for Children with Special Health Care Needs in California

    Science.gov (United States)

    Baker, Dian L.; Hebbeler, Kathleen; Davis-Alldritt, Linda; Anderson, Lori S.; Knauer, Heather

    2015-01-01

    Children with special health care needs (CSHCN) are at risk for school failure when their health needs are not met. Current studies have identified a strong connection between school success and health. This study attempted to determine (a) how schools meet the direct service health needs of children and (b) who provides those services. The study…

  6. Basic research needs for management and disposal of DOE wastes

    International Nuclear Information System (INIS)

    Grazis, B.M.; Schulz, W.W.

    1991-04-01

    This document was chartered by the Department of Energy (DOE), Office of Energy Research. It identifies and describes 87 basic research needs in support of advanced technology for management and disposal of Department of Energy radioactive, hazardous chemical, and mixed wastes. A team of scientists and engineers from several DOE laboratories and sites, from academia, and from industry identified and described the basic research needs called out in this report. Special efforts were made to ensure that basic research needs related to management and disposal of any hazardous chemical wastes generated at nonnuclear DOE sites and facilities were properly identified. It is hoped that scientists in both DOE and nongovernment laboratories and institutions will find this document useful when formulating research efforts relevant to waste management and disposal. For management and disposal of DOE radioactive and mixed wastes, basic research needs are identified in nine separate action areas. Basic research needs for management and disposal of DOE hazardous chemical wastes are identified in five action areas. Sufficient description and background information are provided in the report for each particular research need to enable qualified and imaginative scientists to conceive research efforts and programs that will meet the need. 28 refs., 7 tabs

  7. Ambulatory care pavilion takes its place out front by solving multiple needs.

    Science.gov (United States)

    Saukaitis, C A

    1994-09-01

    In sum, this structure exemplifies the fact that high-tech tertiary care medical centers can be user-friendly to the ambulatory health care consumer by serving their routine needs conveniently and efficiently. Says Gerald Miller, president of Crozer-Chester: "The ambulatory care pavilion has enabled Crozer to successfully and efficiently merge physicians' offices with institutional-based services and inpatient services. We are pleased with how the pavilion positions our medical center for the next century.

  8. The dynamic system of parental work of care for children with special health care needs: A conceptual model to guide quality improvement efforts

    Directory of Open Access Journals (Sweden)

    Hexem Kari R

    2011-10-01

    Full Text Available Abstract Background The work of care for parents of children with complex special health care needs may be increasing, while excessive work demands may erode the quality of care. We sought to summarize knowledge and develop a general conceptual model of the work of care. Methods Systematic review of peer-reviewed journal articles that focused on parents of children with special health care needs and addressed factors related to the physical and emotional work of providing care for these children. From the large pool of eligible articles, we selected articles in a randomized sequence, using qualitative techniques to identify the conceptual components of the work of care and their relationship to the family system. Results The work of care for a child with special health care needs occurs within a dynamic system that comprises 5 core components: (1 performance of tasks such as monitoring symptoms or administering treatments, (2 the occurrence of various events and the pursuit of valued outcomes regarding the child's physical health, the parent's mental health, or other attributes of the child or family, (3 operating with available resources and within certain constraints (4 over the passage of time, (5 while mentally representing or depicting the ever-changing situation and detecting possible problems and opportunities. These components interact, some with simple cause-effect relationships and others with more complex interdependencies. Conclusions The work of care affecting the health of children with special health care needs and their families can best be understood, studied, and managed as a multilevel complex system.

  9. Basic Research Needs for Countering Terrorism

    Energy Technology Data Exchange (ETDEWEB)

    Stevens, W.; Michalske, T.; Trewhella, J.; Makowski, L.; Swanson, B.; Colson, S.; Hazen, T.; Roberto, F.; Franz, D.; Resnick, G.; Jacobson, S.; Valdez, J.; Gourley, P.; Tadros, M.; Sigman, M.; Sailor, M.; Ramsey, M.; Smith, B.; Shea, K.; Hrbek, J.; Rodacy, P.; Tevault, D.; Edelstein, N.; Beitz, J.; Burns, C.; Choppin, G.; Clark, S.; Dietz, M.; Rogers, R.; Traina, S.; Baldwin, D.; Thurnauer, M.; Hall, G.; Newman, L.; Miller, D.; Kung, H.; Parkin, D.; Shuh, D.; Shaw, H.; Terminello, L.; Meisel, D.; Blake, D.; Buchanan, M.; Roberto, J.; Colson, S.; Carling, R.; Samara, G.; Sasaki, D.; Pianetta, P.; Faison, B.; Thomassen, D.; Fryberger, T.; Kiernan, G.; Kreisler, M.; Morgan, L.; Hicks, J.; Dehmer, J.; Kerr, L.; Smith, B.; Mays, J.; Clark, S.

    2002-03-01

    To identify connections between technology needs for countering terrorism and underlying science issues and to recommend investment strategies to increase the impact of basic research on efforts to counter terrorism.

  10. Research needs of the new accelerator technologies

    International Nuclear Information System (INIS)

    Sessler, A.M.

    1982-08-01

    A review is given of some of the new accelerator technologies with a special eye to the requirements which they generate for research and development. Some remarks are made concerning the organizational needs of accelerator research

  11. Delivering HIV care in challenging operating environments: the MSF experience towards differentiated models of care for settings with multiple basic health care needs.

    Science.gov (United States)

    Ssonko, Charles; Gonzalez, Lucia; Mesic, Anita; da Fonseca, Marcio Silveira; Achar, Jay; Safar, Nadia; Martin, Beatriz; Wong, Sidney; Casas, Esther C

    2017-07-21

    Countries in the West and Central African regions struggle to offer quality HIV care at scale, despite HIV prevalence being relatively low. In these challenging operating environments, basic health care needs are multiple, systems are highly fragile and conflict disrupts health care. Médecins Sans Frontières (MSF) has been working to integrate HIV care in basic health services in such settings since 2000. We review the implementation of differentiated HIV care and treatment approaches in MSF-supported programmes in South Sudan (RoSS), Central African Republic (CAR) and Democratic Republic of Congo (DRC). A descriptive analysis from CAR, DRC and RoSS programmes reviewing methodology and strategies of HIV care integration between 2010 and 2015 was performed. We describe HIV care models integrated within the provision of general health care and highlight best practices and challenges. Services included provision of general health care, with out-patient care (range between countries 43,343 and 287,163 consultations/year in 2015) and in-patient care (range 1076-16,595 in 2015). By the end of 2015 antiretroviral therapy (ART) initiations reached 12-255 patients/year. A total of 1101 and 1053 patients were on ART in CAR and DRC, respectively. In RoSS 186 patients were on ART when conflict recommenced late in 2013. While ART initiation and monitoring were mostly clinically driven in the early phase of the programmes, DRC implemented CD4 monitoring and progressively HIV viral load (VL) monitoring during study period. Attacks to health care facilities in CAR and RoSS disrupted service provision temporarily. Programmatic challenges include: competing health priorities influencing HIV care and need to integrate within general health services. Differentiated care approaches that support continuity of care in these programmes include simplification of medical protocols, multi-month ART prescriptions, and community strategies such as ART delivery groups, contingency plans and

  12. Providing palliative care to patients with cancer: Addressing the needs in Kenya

    Directory of Open Access Journals (Sweden)

    Pam Malloy

    2017-01-01

    Full Text Available Cancer is the third highest cause of death in Kenya, preceded by infectious and cardiovascular diseases, and in most cases, diagnosed in later stages. Nurses are the primary caregivers, assessing and managing these patients in the clinic, in inpatient settings, and in rural and remote communities. While cancer rates remain high, the burden to the patient, the caregiver, and society as a whole continues to rise. Kenya's poverty complicates cancer even further. Many Kenyans are unaware of cancer's signs and symptoms, and limited diagnostic and treatment centers are available. Despite these barriers, there is still hope and help for those in Kenya, who suffer from cancer. The World Health Organization has stated that palliative care is a basic human right and nurses providing this care in Kenya are making efforts to support cancer patients' ongoing needs, in order to promote compassionate palliative care and prevent suffering. The purpose of this paper is to address the palliative care needs of patients with cancer in Kenya by providing education to nurses and influencing health-care policy and education at micro and macro levels. A case study weaved throughout will highlight these issues.

  13. Access to patient-centered medical home among Ohio's Children with Special Health Care Needs.

    Science.gov (United States)

    Conrey, Elizabeth J; Seidu, Dazar; Ryan, Norma J; Chapman, Dj Sam

    2013-06-01

    Medical homes deliver primary care that is accessible, continuous, comprehensive, family centered, coordinated, compassionate and culturally effective. Children with special health care needs (CSHCN) require a wide range of support to maintain health, making medical home access particularly important. We sought to understand independent risk factors for lacking access. We analyzed Ohio, USA data from the National Survey of Children with Special Health Care Needs (2005-2006). Among CSHCN, 55.6% had medical home access. The proportion achieving each medical home component was highest for having a personal doctor/nurse and lowest for receiving coordinated care, family-centered care and referrals. Specific subsets of CSHCN were significantly and independently more likely to lack medical home access: Hispanic (AOR=3.08), moderate/high severity of difficulty (AOR=2.84), and any public insurance (AOR=1.60). Efforts to advance medical home access must give special attention to these CSHCN populations and improvements must be made to referral access, family-centered care, and care coordination.

  14. The role of care in nutrition programmes: current research and a research agenda.

    Science.gov (United States)

    Engle, P L; Bentley, M; Pelto, G

    2000-02-01

    The importance of cultural and behavioural factors in children's nutrition, particularly with regard to feeding, has been recognized only recently. The combination of evidence regarding the importance of caregiving behaviour for good nutrition, and improved strategies for measuring behaviour have led to a renewed interest in care. The UNICEF conceptual framework suggests that care, in addition to food security and health care services, are critical for children's survival, growth and development. The present paper focuses on the care practice of complementary feeding, specifically behavioural factors such as parental interaction patterns, feeding style and adaptation of feeding to the child's motor abilities (self-feeding or feeding by others). Three kinds of feeding styles (Birch & Fisher, 1995) are identified: controlling; laissez-faire; responsive. Probable effects of each feeding style on nutrient intake are described. A number of studies of feeding behaviour have suggested that the laissez-faire style is most frequently observed among families and communities with a higher prevalence of malnourished children. Nutrition interventions that have been able to show significant effects on outcomes, such as the Hearth Model in Vietnam (Sternin et al. 1997), have usually incorporated behavioural components in their intervention. At this time, there have been no tests of the efficacy of behavioural interventions to improve feeding practices. Research is needed to understand behavioural factors in complementary feeding, and to identify and test intervention strategies designed to improve nutrient intake of young children. Finally, the paper concludes with a discussion of how nutrition programmes might change if care were incorporated.

  15. WORKING MOTHERS AND THE NEED FOR CHILD CARE SERVICES.

    Science.gov (United States)

    Women's Bureau (DOL), Washington, DC.

    DATA AND CHARTS DOCUMENT THE RISING NUMBER OF WORKING MOTHERS IN THE UNITED STATES TODAY AND THE INCREASING NEED FOR CHILD CARE SERVICES. DATA WERE OBTAINED FROM U.S. DEPARTMENTS OF LABOR, COMMERCE, AND HEALTH, EDUCATION, AND WELFARE. NEARLY 10 MILLION MOTHERS WITH CHILDREN UNDER 18 YEARS OF AGE WERE WORKERS IN MARCH 1966. MORE THAN ONE OF THREE…

  16. 45 CFR 261.56 - What happens if a parent cannot obtain needed child care?

    Science.gov (United States)

    2010-10-01

    ... care arrangements are unavailable. (2) Refusal to work when an acceptable form of child care is... child care? 261.56 Section 261.56 Public Welfare Regulations Relating to Public Welfare OFFICE OF FAMILY....56 What happens if a parent cannot obtain needed child care? (a)(1) If the individual is a single...

  17. Can a publicly funded home care system successfully allocate service based on perceived need rather than socioeconomic status? A Canadian experience.

    Science.gov (United States)

    Laporte, Audrey; Croxford, Ruth; Coyte, Peter C

    2007-03-01

    The present quantitative study evaluates the degree to which socioeconomic status (SES), as opposed to perceived need, determines utilisation of publicly funded home care in Ontario, Canada. The Registered Persons Data Base of the Ontario Health Insurance Plan was used to identify the age, sex and place of residence for all Ontarians who had coverage for the complete calendar year 1998. Utilisation was characterised in two dimensions: (1) propensity - the probability that an individual received service, which was estimated using a multinomial logit equation; and (2) intensity - the amount of service received, conditional on receipt. Short- and long-term service intensity were modelled separately using ordinary least squares regression. Age, sex and co-morbidity were the best predictors (P funded home care as well as how much care was received, with sicker individuals having increased utilisation. The propensity and intensity of service receipt increased with lower SES (P funded home care service was primarily based on perceived need rather than ability to pay, barriers to utilisation for those from areas with a high proportion of recent immigrants were identified. Future research is needed to assess whether the current mix and level of publicly funded resources are indeed sufficient to offset the added costs associated with the provision of high-quality home care.

  18. Caring for the Caregiver: Identifying the Needs of Those Called to Care Through Partnerships with Congregations.

    Science.gov (United States)

    Galiatsatos, Panagis; Nelson, Katie; Hale, W Daniel

    2017-06-01

    As the older adult population continues to grow, the prevalence of chronic diseases is also increasing, leading to the need for novel ways of managing this large population of patients. One solution is to focus on informal caregivers. These informal caregivers already make a substantial contribution to our nation's healthcare finances and patient health outcomes. Caregivers also derive benefits from caring for their family member or friend; however, it is not uncommon for these individuals to experience negative health consequences, or what is often called "burden of care." Those called to care are not without their own burdens, and they must frequently make significant lifestyle adjustments that impact their own health. Therefore, for caregivers to be effective, caring for the caregivers must be a focus of medicine in the twenty-first century.

  19. Should We Care About Adolescents Who Care for Themselves? What We've Learned and What We Need to Know About Youth in Self-Care.

    Science.gov (United States)

    Mahoney, Joseph L; Parente, Maria E

    2009-12-01

    This article provides an overview of existing research on the prevalence and predictors of adolescent self-care and on the consequences associated with it. Self-care, in which the young are left unsupervised during out-of-school hours, is a common experience for millions of American youth, and existing studies suggest that this arrangement may represent a risk for the development of behavior problems. However, the behavior problems associated with self-care depend on both individual and environmental factors and are most likely to develop when self-care (1) occurs out of the home, (2) involves permissive parenting and/or low parental monitoring, (3) takes place in neighborhoods with high levels of crime and disorganization, (4) involves adolescents with preexisting behavioral problems, and (5) represents an intensive and persistent arrangement. Following our survey of current research on self-care, we offer recommendations regarding future research and policy.

  20. Patient needs and research priorities in the enteral nutrition market - a quantitative prioritization analysis.

    Science.gov (United States)

    Weenen, T C; Jentink, A; Pronker, E S; Commandeur, H R; Claassen, E; Boirie, Y; Singer, P

    2014-10-01

    A quantitative systematic identification and prioritization of unmet needs and research opportunities in relation to enteral nutrition was conducted by means of a tailor-made health research prioritization process. The research objectives were reached by conducting qualitative interviews followed by quantitative questionnaires targeting enteral nutrition key opinion leaders (KOLs). (1) Define disease areas that deserve more research attention; (2) Rank importance of product characteristics of tube feeding (TF) and oral nutritional supplements (ONS); (3) Assess involvement of KOLs in enteral nutrition R&D process. KOLs ranked three product characteristics and three disease areas that deserve additional research attention. From these, overall priority scores were calculated by multiplying ranks for both product characteristics and disease areas. 17 qualitative interviews were conducted and 77 questionnaires (response rate 35%) were completed and returned. (1) Disease areas in ONS and TF with highest priorities are: ONS: general malnutrition & geriatrics, TF: intensive care. (2) TF product characteristics with highest priorities are: composition and clinical evidence from a KOL perspective; tolerance and ease of use from a patient perspective. ONS product characteristics with highest priorities are: composition, clinical evidence and taste from a KOL perspective; taste from a patient perspective. We find a high discrepancy between product characteristic prioritization from a KOL and patient perspective. (3) Although 62% of all KOLs give advice to enteral nutrition companies on patient needs, they under-influence the setting of research priorities by enteral nutrition companies. This study provides a systematic approach to achieve research prioritization in enteral nutrition. In addition to providing new directions for enteral nutrition research and development, this study highlights the relevance of involving KOLs in the identification of research priorities as they

  1. 'Every pregnant woman needs a midwife'--the experiences of HIV affected women in maternity care.

    Science.gov (United States)

    Kelly, Carmel; Alderdice, Fiona; Lohan, Maria; Spence, Dale

    2013-02-01

    'Every pregnant woman needs a midwife'-the experiences of HIV affected women in Northern Ireland. to explore HIV positive women's experiences of pregnancy and maternity care, with a focus on their interactions with midwives. a prospective qualitative study. regional HIV unit in Northern Ireland. 22 interviews were conducted with 10 women at different stages of their reproductive trajectories. the pervasive presence of HIV related stigma threatened the women's experience of pregnancy and care. The key staff attributes that facilitated a positive experience were knowledge and experience, empathy and understanding of their unique needs and continuity of care. pregnancy in the context of HIV, whilst offering a much needed sense of normality, also increases woman's sense of anxiety and vulnerability and therefore the need for supportive interventions that affirm normality is intensified. A maternity team approach, with a focus on providing 'balanced care' could meet all of the woman and child's medical needs, whilst also emphasising the normalcy of pregnancy. Crown Copyright © 2012. Published by Elsevier Ltd. All rights reserved.

  2. [Philosophy of care, care and nursing care: a literature review for a research at the intersection of philosophy and care].

    Science.gov (United States)

    Remy-Largeau, Isabelle

    2011-12-01

    Very recently the concept of care has burst on the French philosophical scene. What are the contours of this developing "philosophy of care"? How does it place itself in relation to what are today called the ethics of care? And how does it take account of nursing care, as a discipline understood in its triple dimension: social, pedagogical and epistemological? The research presented in this paper examines some of the founding texts of this philosophy of care through the prism of these questions. It is the partial presentation of a reflection developed from a literature review that will include two other sections. The second section will focus on studying the way in which the ethics of care allow for nursing care and enter into dialogue with the nascent philosophy of care. The third will focus, conversely, on the way nurses integrate reflections derived from ethics of care and the philosophy of care into the evolution of their own discipline and contribute back to the development of a philosophy of care. These three questions are in turn part of more extensive research carried out in preparation for a philosophy thesis. They are meant as an invitation and a contribution towards what we hope will be a successful encounter between philosophy and nursing care.

  3. The role of primary health care services to better meet the needs of Aboriginal Australians transitioning from prison to the community

    OpenAIRE

    Lloyd, Jane E.; Delaney-Thiele, Dea; Abbott, Penny; Baldry, Eileen; McEntyre, Elizabeth; Reath, Jennifer; Indig, Devon; Sherwood, Juanita; Harris, Mark F.

    2015-01-01

    Background Aboriginal Australians are more likely than other Australians to cycle in and out of prison on remand or by serving multiple short sentences?a form of serial incarceration and institutionalisation. This cycle contributes to the over-representation of Aboriginal Australians in prison and higher rates of recidivism. Our research examined how primary health care can better meet the health care and social support needs of Aboriginal Australians transitioning from prison to the communit...

  4. High Confidence Software and Systems Research Needs

    Data.gov (United States)

    Networking and Information Technology Research and Development, Executive Office of the President — This White Paper presents a survey of high confidence software and systems research needs. It has been prepared by the High Confidence Software and Systems...

  5. Clinical staff perceptions of palliative care-related quality of care, service access, education and training needs and delivery confidence in an acute hospital setting.

    Science.gov (United States)

    Frey, Rosemary; Gott, Merryn; Raphael, Deborah; O'Callaghan, Anne; Robinson, Jackie; Boyd, Michal; Laking, George; Manson, Leigh; Snow, Barry

    2014-12-01

    Central to appropriate palliative care management in hospital settings is ensuring an adequately trained workforce. In order to achieve optimum palliative care delivery, it is first necessary to create a baseline understanding of the level of palliative care education and support needs among all clinical staff (not just palliative care specialists) within the acute hospital setting. The objectives of the study were to explore clinical staff: perceptions concerning the quality of palliative care delivery and support service accessibility, previous experience and education in palliative care delivery, perceptions of their own need for formal palliative care education, confidence in palliative care delivery and the impact of formal palliative care training on perceived confidence. A purposive sample of clinical staff members (598) in a 710-bed hospital were surveyed regarding their experiences of palliative care delivery and their education needs. On average, the clinical staff rated the quality of care provided to people who die in the hospital as 'good' (x̄=4.17, SD=0.91). Respondents also reported that 19.3% of their time was spent caring for end-of-life patients. However, only 19% of the 598 respondents reported having received formal palliative care training. In contrast, 73.7% answered that they would like formal training. Perceived confidence in palliative care delivery was significantly greater for those clinical staff with formal palliative care training. Formal training in palliative care increases clinical staff perceptions of confidence, which evidence suggests impacts on the quality of palliative care provided to patients. The results of the study should be used to shape the design and delivery of palliative care education programmes within the acute hospital setting to successfully meet the needs of all clinical staff. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  6. Psychosocial Needs of Children in Foster Care and the Impact of Sexual Abuse

    NARCIS (Netherlands)

    Steenbakkers, Annemarie; Ellingsen, Ingunn; van der Steen, Stephanie; Grietens, Hans

    Children in family foster care, especially those who have experienced sexual abuse, require a safe and nurturing environment in which their psychosocial needs are met. However, there is limited knowledge on how youth prioritize various needs and what impact previous experiences have on these needs.

  7. Perceived burden of care and reported coping strategies and needs for family caregivers of people with mental disorders in Zimbabwe

    Directory of Open Access Journals (Sweden)

    Bazondlile D. Marimbe

    2016-08-01

    Conclusion: Caregivers carry a substantial and frequently unrecognized burden of caring for a family member with mental disorder. Better support is needed from health professionals and social services to help them cope better. Further research is required to quantitatively measure caregiver burden and evaluate potential interventions in Zimbabwe.

  8. Persona Development and Educational Needs to Support Informal Caregivers.

    Science.gov (United States)

    Al Awar, Zeina; Kuziemsky, Craig

    2017-01-01

    Informal caregivers are playing an increasing role in community based care delivery. Research is needed that looks at the educational needs of informal caregivers as a precursor to HIT design to support community care delivery. A challenge is informal caregivers have very diverse educational needs. Personas are an approach to describe user characteristics as part of systems design and this approach could be used to understand and categorize the various educational needs of informal caregivers. This paper addresses this research need and provides a method for persona development and the identification of educational needs for informal caregivers.

  9. Research in cardiovascular care : A position statement of the Council on Cardiovascular Nursing and Allied Professionals of the European Society of Cardiology

    NARCIS (Netherlands)

    Jaarsma, T.; Deaton, C.; Fitzsimmons, D.; Fridlund, B.; Hardig, B.M.; Mahrer-Imhof, R.; Moons, P.; Noureddine, S.; O'Donnell, S.; Pedersen, S.S.; Stewart, S.; Stromberg, A.; Thompson, D.R.; Tokem, Y.; Kjellstrom, B.

    2014-01-01

    To deliver optimal patient care, evidence-based care is advocated and research is needed to support health care staff of all disciplines in deciding which options to use in their daily practice. Due to the increasing complexity of cardiac care across the life span of patients combined with the

  10. "Hope for the best, prepare for the worst": A qualitative interview study on parents' needs and fears in pediatric advance care planning.

    Science.gov (United States)

    Lotz, Julia Desiree; Daxer, Marion; Jox, Ralf J; Borasio, Gian Domenico; Führer, Monika

    2017-09-01

    Pediatric advance care planning is advocated by healthcare providers because it may increase the chance that patient and/or parent wishes are respected and thus improve end-of-life care. However, since end-of-life decisions for children are particularly difficult and charged with emotions, physicians are often afraid of addressing pediatric advance care planning. We aimed to investigate parents' views and needs regarding pediatric advance care planning. We performed a qualitative interview study with parents of children who had died from a severe illness. The interviews were analyzed by descriptive and evaluation coding according to Saldaña. We conducted semi-structured interviews with 11 parents of 9 children. Maximum variation was sought regarding the child's illness, age at death, care setting, and parent gender. Parents find it difficult to engage in pediatric advance care planning but consider it important. They argue for a sensitive, individualized, and gradual approach. Hope and quality of life issues are primary. Parents have many non-medical concerns that they want to discuss. Written advance directives are considered less important, but medical emergency plans are viewed as necessary in particular cases. Continuity of care and information should be improved through regular pediatric advance care planning meetings with the various care providers. Parents emphasize the importance of a continuous contact person to facilitate pediatric advance care planning. Despite a need for pediatric advance care planning, it is perceived as challenging. Needs-adjusted content and process and continuity of communication should be a main focus in pediatric advance care planning. Future research should focus on strategies that facilitate parent engagement in pediatric advance care planning to increase the benefit for the families.

  11. Assessing basic needs in frail older persons calls for aesthetic nursing skills – an ethnographic approach

    DEFF Research Database (Denmark)

    Kollerup, Mette Geil; Angel, Sanne

    2015-01-01

    Background: Despite research on caring for older persons' basic needs, a number of hospital admissions occur which had been preventable, given the proper attention to caring for the basic needs. Literature show that caring for the basic needs of frail older persons can be complicated if they are ......Background: Despite research on caring for older persons' basic needs, a number of hospital admissions occur which had been preventable, given the proper attention to caring for the basic needs. Literature show that caring for the basic needs of frail older persons can be complicated...

  12. Massachusetts health reform and access for children with special health care needs.

    Science.gov (United States)

    Smith, Anna Jo; Chien, Alyna T

    2014-08-01

    Children with special health care needs (CSHCN) face unique challenges in accessing affordable health care. Massachusetts implemented major health reform in 2006; little is known about the impact of this state's health reform on uninsurance, access to care, and financial protection for privately and publicly insured CSHCN. We used a difference-in-differences (DD) approach to compare uninsurance, access to primary and specialty care, and financial protection in Massachusetts versus other states and Washington, DC before and after Massachusetts health reform. Parent-reported data were used from the 2005-2006 and 2009-2010 National Survey of Children with Special Health Care Needs and adjusted for age, gender, race/ethnicity, non-English language at home, and functional difficulties. Postreform, living in Massachusetts was not associated with significant decreases in uninsurance or increases in access to primary care for CSHCN. For privately insured CSHCN, Massachusetts was associated with increased access to specialists (DD = 6.0%; P ≤ .001) postreform. For publicly insured CSHCN, however, there was a significant decrease in access to prescription medications (DD = -7.2%; P = .003) postreform. Living in Massachusetts postreform was not associated with significant changes in financial protection compared with privately or publicly insured CSHCN in other states. Massachusetts health reform likely improved access to specialists for privately insured CSHCN but did not decrease instances of uninsurance, increase access to primary care, or improve financial protection for CSHCN in general. Comparable provisions within the Affordable Care Act may produce similarly modest outcomes for CSHCN. Copyright © 2014 by the American Academy of Pediatrics.

  13. Health education during antenatal care: the need for more

    Directory of Open Access Journals (Sweden)

    Al-Ateeq MA

    2015-02-01

    Full Text Available Mohammed A Al-Ateeq,1 Amal A Al-Rusaiess21College of Medicine, King Saud Bin Abdul-Aziz University for Health Sciences, 2Department of Family Medicine and Primary Health Care, King Abdul-Aziz Medical City, National Guard Health Affairs, Riyadh, Kingdom of Saudi Arabia Abstract: The aim of health education during ante natal is to provide advice, education, ­reassurance and support, to address and treat the minor problems of pregnancy, and to provide effective screening during the pregnancy. Exploring current practices in this regard revealed the need for more organized educational activities to ensure high quality and clients satisfaction. Keywords: antenatal care, health education, pregnant women, postpartum, misconceptions

  14. Supporting the library and information needs of UWE health and social care students on placement.

    Science.gov (United States)

    Plaice, Caroline; Lloyd, Jon; Shaw, Pauline

    2017-03-01

    The aim of this research was to explore the library and information needs of health and social care students whilst on placement. Both desk and primary research were conducted and included an online questionnaire to students and semi-structured interviews. The questionnaire was completed by 252 students from a variety of programmes, equivalent to a 10% response rate. The results indicate a wide range of factors impacting on the library and information experiences of students. Whilst differences in the availability of a physical library in hospital or community locations still exist, these are mitigated by technology and a preference for home study. A significant result is that 77% (n = 193) of students on placement study at home, using a variety of Internet-connected devices. This highlights a marked change in practice and underlines the need for mobile-compliant e-resources and accessible at-a-distance services. As a result of this research, practical recommendations on how library support can be improved were developed including enhanced collaboration and learning with NHS colleagues, and knowledge sharing with other departments within the University who support our students. © 2017 Health Libraries Group.

  15. Health care competition, strategic mission, and patient satisfaction: research model and propositions.

    Science.gov (United States)

    Rivers, Patrick A; Glover, Saundra H

    2008-01-01

    In all industries, competition among businesses has long been encouraged as a mechanism to increase value for patients. In other words, competition ensures the provision of better products and services to satisfy the needs of customers This paper aims to develop a model that can be used to empirically investigate a number of complex issues and relationships associated with competition in the health care industry. A literature review was conducted. A total of 50 items of literature related to the subject were reviewed. Various perspectives of competition, the nature of service quality, health system costs, and patient satisfaction in health care are examined. A model of the relationship among these variables is developed. The model depicts patient satisfaction as an outcome measure directly dependent on competition. Quality of care and health care systems costs, while also directly dependent on the strategic mission and goals, are considered as determinants of customer satisfaction as well. The model is discussed in the light of propositions for empirical research. Empirical studies based on the model proposed in this paper should help identify areas with significant impact on patient satisfaction while maintaining high quality of service at lower costs in a competitive environment. The authors develop a research model which included propositions to examine the complex issues of competition in the health care industry.

  16. Building the Partners HealthCare Biobank at Partners Personalized Medicine: Informed Consent, Return of Research Results, Recruitment Lessons and Operational Considerations

    Directory of Open Access Journals (Sweden)

    Elizabeth W. Karlson

    2016-01-01

    Full Text Available The Partners HealthCare Biobank is a Partners HealthCare enterprise-wide initiative whose goal is to provide a foundation for the next generation of translational research studies of genotype, environment, gene-environment interaction, biomarker and family history associations with disease phenotypes. The Biobank has leveraged in-person and electronic recruitment methods to enroll >30,000 subjects as of October 2015 at two academic medical centers in Partners HealthCare since launching in 2010. Through a close collaboration with the Partners Human Research Committee, the Biobank has developed a comprehensive informed consent process that addresses key patient concerns, including privacy and the return of research results. Lessons learned include the need for careful consideration of ethical issues, attention to the educational content of electronic media, the importance of patient authentication in electronic informed consent, the need for highly secure IT infrastructure and management of communications and the importance of flexible recruitment modalities and processes dependent on the clinical setting for recruitment.

  17. Perspective: Leveraging the health care workforce: what do we need and what educational system will get us there?

    Science.gov (United States)

    Garson, Arthur

    2011-11-01

    Shortages of 100,000 physicians and up to one million nurses are projected in the next 10 years. If these statistics are close to true, medical schools would need a 100% increase in graduates over the next 4 years, and nursing schools a 100% increase over the next 13 years. These calculations are instructive in that they demonstrate the absurdity of expecting schools to provide these sorts of increases in that time frame. Other solutions must be considered. For instance, do doctors and nurses need to do everything they are currently called on to do? Could not other members of the health care workforce, such as well-trained lay workers, be leveraged to do some of the more routine work, freeing medical professionals to perform their unique roles? How is such a workforce built, and how shall learners be educated to fill those needs? This article presents a hypothetical model that could be implemented based on carefully researched pilots to meet health care education needs. The model features three essential components: (1) a school for the public in which lay teachers develop curricula with members of the public, for example, about how to incentivize healthy behavior, (2) a college for health as part of a university with interdisciplinary teaching, where patients, faculty members, and students interact in each of the schools and learn together, and (3) the most effective and efficient nursing and medical school curricula, developed together based on evidence of what the student needs to know.

  18. The Bereaved Parent Needs Assessment: a new instrument to assess the needs of parents whose children died in the pediatric intensive care unit*.

    Science.gov (United States)

    Meert, Kathleen L; Templin, Thomas N; Michelson, Kelly N; Morrison, Wynne E; Hackbarth, Richard; Custer, Joseph R; Schim, Stephanie M; Briller, Sherylyn H; Thurston, Celia S

    2012-11-01

    To evaluate the reliability and validity of the Bereaved Parent Needs Assessment, a new instrument to measure parents' needs and need fulfillment around the time of their child's death in the pediatric intensive care unit. We hypothesized that need fulfillment would be negatively related to complicated grief and positively related to quality of life during bereavement. Cross-sectional survey. Five U.S. children's hospital pediatric intensive care units. Parents (n = 121) bereaved in a pediatric intensive care unit 6 months earlier. Surveys included the 68-item Bereaved Parent Needs Assessment, the Inventory of Complicated Grief, and the abbreviated version of the World Health Organization Quality of Life questionnaire. Each Bereaved Parent Needs Assessment item described a potential need and was rated on two scales: 1) a 5-point rating of importance (1 = not at all important, 5 = very important) and 2) a 5-point rating of fulfillment (1 = not at all met, 5 = completely met). Three composite scales were computed: 1) total importance (percentage of all needs rated ≥4 for importance), 2) total fulfillment (percentage of all needs rated ≥4 for fulfillment), and 3) percent fulfillment (percentage of important needs that were fulfilled). Internal consistency reliability was assessed by Cronbach's α and Spearman-Brown-corrected split-half reliability. Generalized estimating equations were used to test predictions between composite scales and the Inventory of Complicated Grief and World Health Organization Quality of Life questionnaire. Two items had mean importance ratings 4. Reliability of composite scores ranged from 0.92 to 0.94. Total fulfillment was negatively correlated with Inventory of Complicated Grief (r = -.29; p Quality of Life questionnaire (r = .21; p education, and loss of an only child, percent fulfillment remained significantly correlated with Inventory of Complicated Grief but not with World Health Organization Quality of Life questionnaire. The

  19. Assessing systems quality in a changing health care environment: the 2009-10 national survey of children with special health care needs.

    Science.gov (United States)

    Strickland, Bonnie B; Jones, Jessica R; Newacheck, Paul W; Bethell, Christina D; Blumberg, Stephen J; Kogan, Michael D

    2015-02-01

    To provide a national, population-based assessment of the quality of the health care system for children and youth with special health care needs using a framework of six health care system quality indicators. 49,242 interviews with parents of children with special health care needs from the 2009-10 National Survey of Children with Special Health Care Needs (NS-CSHCN) were examined to determine the extent to which CSHCN had access to six quality indicators of a well-functioning system of services. Criteria for determining access to each indicator were established and applied to the survey data to estimate the proportion of CSHCN meeting each quality indicator by socio-demographic status and functional limitations. 17.6% of CSHCN received care consistent with all six quality indicators. Results for each component of the system quality framework ranged from a high of 70.3% of parents reporting that they shared decision-making with healthcare providers to a low of 40% of parents reporting receipt of services needed for transition to adult health care. Attainment rates were lower for CSHCN of minority racial and ethnic groups, those residing in households where English was not the primary language, those in lower income households, and those most impacted by their health condition. Only a small proportion of CSHCN receive all identified attributes of a high-quality system of services. Moreover, significant disparities exist whereby those most impacted by their conditions and those in traditionally disadvantaged groups are served least well by the current system. A small proportion of CSHCN appear to remain essentially outside of the system, having met few if any of the elements studied.

  20. Morality in the mundane. Specific Needs for Ethics Support in Elderly Care

    NARCIS (Netherlands)

    Dauwerse, L.M.; van der Dam, S.; Abma, T.A.

    2012-01-01

    Ethics support is called for to improve the quality of care in elderly institutions. Various forms of ethics support are presented, but the needs for ethics support remain unknown. Using a mixed-methods design, this article systematically investigates the specific needs for ethics support in elderly

  1. A road map for leptospirosis research and health policies based on country needs in Latin America.

    Science.gov (United States)

    Pereira, Martha Maria; Schneider, Maria Cristina; Munoz-Zanzi, Claudia; Costa, Federico; Benschop, Jackie; Hartskeerl, Rudy; Martinez, Julio; Jancloes, Michel; Bertherat, Eric

    2018-02-19

    This report summarizes the presentations, discussions and the recommendations coming from the Oswaldo Cruz Institute/FIOCRUZ International Workshop for Leptospirosis Research Based on Country Needs and the 5th Global Leptospirosis Environmental Action Network meeting, which was held in the city of Rio de Janeiro, Brazil, 10-12 November 2015. The event focused on health policy and worked to develop a road map as a consensus document to help guide decision-making by policymakers, funding bodies, and health care professionals. The direction that leptospirosis research should take in the coming years was emphasized, taking into account the needs of countries of Latin America, as well as experiences from other world regions, as provided by international experts. The operational concepts of "One Health" and translational research underlaid the discussions and the resulting recommendations. Despite the wide geographic distribution of leptospirosis and its impact in terms of incidence, morbidity, and mortality, leptospirosis is not yet considered a "tool-ready" disease for global initiatives. Surveillance programs need new tools and strategies for early detection, prevention, and follow-up. The major recommendations developed at the Rio meeting cover both health policy and research. The health policy recommendations should be taken into account by decisionmakers, government officials, and the Pan American Health Organization. The priorities for research, technological development, and innovation should be considered by research institutions, universities, and stakeholders.

  2. Parents' perspectives of the transition to home when a child has complex technological health care needs.

    LENUS (Irish Health Repository)

    Brenner, Maria

    2015-09-01

    There is an increasing number of children with complex care needs, however, there is limited evidence of the experience of families during the process of transitioning to becoming their child\\'s primary care giver. The aim of this study was to explore parents\\' perspectives of the transition to home of a child with complex respiratory health care needs.

  3. Safety research needs for Russian-designed reactors

    International Nuclear Information System (INIS)

    1998-01-01

    In June 1995, an OECD Support Group was set up to perform a broad study of the safety research needs of Russian-designed reactors. This Support Group was endorsed by the CSNI. The Support Group, which is composed of senior experts on safety research from several OECD countries and from Russia, prepared this Report. The Group reviewed the safety research performed to support Russian-designed reactors and set down its views on future needs. The review concentrates on the following main topics: Thermal-Hydraulics/Plant Transients for VVERs; Integrity of Equipment and Structures for VVERs; Severe Accidents for VVERs; Operational Safety Issues; Thermal-Hydraulics/Plant Transients for RBMKs; Integrity of Equipment and Structures for RBMKs; Severe Accidents for RBMKs. (K.A.)

  4. Music therapy for the Assessment of Parental Competencies for Children in need of Care

    DEFF Research Database (Denmark)

    Jacobsen, Stine; Wigram, Tony

    2007-01-01

    The assessment for parenting competencies for parents of children potentially in need of care involves an evaluation of their relationship with their child, and the interaction that underpins that relationship. The "Assessment of Parenting Competences" (APC) music therapy assessment provides...... a structured series of interactional exercises that allow the therapist to explore the nature of the relationship both as a tool in every day clinical work and as a research method. The method of the assessment involves free improvisation, turn-taking exercises, and following leading exercises and is evaluated...

  5. Supportive and palliative care needs of families of children who die from cancer: an Australian study.

    Science.gov (United States)

    Monterosso, Leanne; Kristjanson, Linda J

    2008-01-01

    To obtain feedback from parents of children who died from cancer about their understanding of palliative care, their experiences of palliative and supportive care received during their child's illness, and their palliative and supportive care needs. A qualitative study with semi-structured interviews. 24 parents from Perth (n = 10), Melbourne (n = 5), Brisbane (n = 5) and Sydney (n = 4). Five Australian tertiary paediatric oncology centres. Results Parents whose children died from cancer live within a context of chronic uncertainty and apprehension. Parents construed palliative care negatively as an independent process at the end of their children's lives rather than as a component of a wider and continuous process where children and their families are offered both curative and palliative care throughout the cancer trajectory. The concept of palliative care was perceived to be misunderstood by key health professionals involved in the care of the child and family. The importance and therapeutic value of authentic and honest relationships between health professionals and parents, and between health professionals and children were highlighted as a critical aspect of care. Also highlighted was the need to include children and adolescents in decision making, and for the delivery of compassionate end-of-life care that is sensitive to the developmental needs of the children, their parents and siblings. There is a need for health professionals to better understand the concept of palliative care, and factors that contribute to honest, open, authentic and therapeutic relationships of those concerned in the care of the dying child. This will facilitate a better understanding by both parents and their children with cancer, and acceptance of the integration of palliative and supportive care in routine cancer care.

  6. Burden and happiness in head and neck cancer carers: the role of supportive care needs.

    Science.gov (United States)

    Hanly, Paul; Maguire, Rebecca; Balfe, Myles; Hyland, Philip; Timmons, Aileen; O'Sullivan, Eleanor; Butow, Phyllis; Sharp, Linda

    2016-10-01

    Our study aimed to investigate the relationship between unmet supportive care needs and carer burden and happiness, in head and neck cancer (HNC). Two hundred eighty-five HNC informal carers were sent a postal questionnaire between January and June 2014, which included the supportive care needs survey for partners and caregivers of cancer survivors (SCNS-P&C) and the CarerQol, which assesses burden and happiness. Multiple regression analysis was conducted to examine the association of (i) carer characteristics, (ii) carer situation, and (iii) unmet supportive care needs, with carer burden and happiness One hundred ninety-seven carers completed the questionnaire (response rate = 69 %), 180 of whom were included in the analysis. The majority were female (76 %), not in paid employment (68 %) and caring for their spouse (67 %). On average, carers reported relatively low levels of burden and relatively high levels of happiness. Carer factors explained 42 % of variance in levels of burden and 24 % of variance in levels of happiness. Healthcare service needs were associated with carer burden (β = .28, p = .04), while psychological needs (β = -.38, p = .028), health care service needs (β = -.30, p = .049), information needs (β = .29, p = .028), carer comorbidity (β = -.18, p = .030), and gender (β = -.16, p = .045) were associated with happiness. Our results indicate that different aspects of carer characteristics and unmet needs are associated with carer burden and happiness. Efforts directed at reducing unmet healthcare service needs in particular are merited given their associations with both aspects of carer quality of life.

  7. Increasing research capacity and changing the culture of primary care towards reflective inquiring practice: the experience of the West London Research Network (WeLReN).

    Science.gov (United States)

    Thomas, P; While, A

    2001-05-01

    A number of primary care research networks were set up throughout England in 1998 in order to (1) improve the quality of primary care research (2) increase the research capacity of primary care, and (3) change the culture of primary care towards reflective inquiring practice (NHSE, 2000b). It is not clear how best to operate a network to achieve these diverse aims. This paper describes the first 30 months of a network that adopted a whole system approach in the belief that this would offer the best chance of simultaneously achieving the three aims. A cycle of activity was designed to facilitate the formation of multidisciplinary coalitions of interest for research with complementary 'top down' and 'bottom up' programmes of work co-existing. At least 330 people participated in the generation of research questions of whom one third (33%) were general practitioners, 16% community nurses, 6% practice managers and other primary care practitioners. Over two fifths (43%) were 'key allies'--academics, health authority staff, community workers and project workers. One fifth (110) of all practices (500) in the WeLReN area have collaborated in at least one research project. The ratio of doctor:nurse participation in the 24 research project teams was markedly different in the supported coalitions (2:1) compared to projects devised and led by more experienced researchers (6:1). The evidence suggests that it is possible to operate a primary care research network in a way that develops coalitions of interest from different parts of the health care system as well as both 'top down' and 'bottom up' led projects. It is too early to tell if the approach will be able to achieve its aims in the long-term but the activity data are encouraging. There is a need for more research on the theoretical basis of network operation.

  8. Improvement of pressure ulcer prevention care in private for-profit residential care homes: an action research study.

    Science.gov (United States)

    Kwong, Enid Wy; Hung, Maria Sy; Woo, Kevin

    2016-11-25

    A need exits to develop a protocol for preventing pressure ulcers (PUs) in private for-profit nursing homes in Hong Kong, where the incidence of PUs is relatively high and which have high proportion of non-professional care staff. The implementation of such protocol would involve changes in the practice of care, likely evoking feelings of fear and uncertainty that may become a barrier to staff adherence. We thus adopted the Systems Model of Action Research in this study to manage the process of change for improving PU prevention care and to develop a pressure ulcer prevention protocol for private for-profit nursing homes. A total of 474 residents and care staff who were health workers, personal care workers, and/or nurses from four private, for-profit nursing homes in Hong Kong participated in this study. Three cyclic stages and steps, namely, unfreezing (planning), changing (action), and refreezing (results) were carried out. During each cycle, focus group interviews, field observations of the care staff's practices and inspections of the skin of the residents for pressure ulcers were conducted to evaluate the implementation of the protocol. Qualitative content analysis was adopted to analyse the data. The data and methodological triangulation used in this study increased the credibility and validity of the results. The following nine themes emerged from this study: prevention practices after the occurrence of PUs, the improper use of pressure ulcer prevention materials, non-compliance with several prevention practices, improper prevention practices, the perception that the preventive care was being performed correctly, inadequate readiness to use the risk assessment tool, an undesirable environment, the supplying of unfavorable resources, and various management styles in the homes with or without nurses. At the end of the third cycle, the changes that were identified included improved compliance with the revised risk assessment method, the timely and appropriate

  9. Developing research priorities for palliative care of people with intellectual disabilities in Europe: a consultation process using nominal group technique.

    Science.gov (United States)

    Tuffrey-Wijne, I; Wicki, M; Heslop, P; McCarron, M; Todd, S; Oliver, D; de Veer, A; Ahlström, G; Schäper, S; Hynes, G; O'Farrell, J; Adler, J; Riese, F; Curfs, L

    2016-03-24

    Empirical knowledge around palliative care provision and needs of people with intellectual disabilities is extremely limited, as is the availability of research resources, including expertise and funding. This paper describes a consultation process that sought to develop an agenda for research priorities for palliative care of people with intellectual disabilities in Europe. A two-day workshop was convened, attended by 16 academics and clinicians in the field of palliative care and intellectual disability from six European countries. The first day consisted of round-table presentations and discussions about the current state of the art, research challenges and knowledge gaps. The second day was focused on developing consensus research priorities with 12 of the workshop participants using nominal group technique, a structured method which involved generating a list of research priorities and ranking them in order of importance. A total of 40 research priorities were proposed and collapsed into eleven research themes. The four most important research themes were: investigating issues around end of life decision making; mapping the scale and scope of the issue; investigating the quality of palliative care for people with intellectual disabilities, including the challenges in achieving best practice; and developing outcome measures and instruments for palliative care of people with intellectual disabilities. The proposal of four major priority areas and a range of minor themes for future research in intellectual disability, death, dying and palliative care will help researchers to focus limited resources and research expertise on areas where it is most needed and support the building of collaborations. The next steps are to cross-validate these research priorities with people with intellectual disabilities, carers, clinicians, researchers and other stakeholders across Europe; to validate them with local and national policy makers to determine how they could best be

  10. Using expanded individualized health care plans to assist teachers of students with complex health care needs.

    Science.gov (United States)

    Heller, Kathryn Wolff; Tumlin, Jennifer

    2004-06-01

    As special education teachers have increasing numbers of students requiring health care procedures in their classrooms, school nurses need to help these teachers maintain a safe, healthy environment for their students. Part of this consists of having teachers know the steps to take should certain problems arise. This article examines the receptivity of using an expanded version of an individualized health care plan (IHP) to provide critical information to address health care problems, as well as having individualized education program (IEP) objectives for instructional targets identified in the IHP. The findings of this study indicate that a high percentage of school nurses and special education teachers were in favor of an expanded version of the IHP. There was also support for teaching students to independently or partially participate in performing their own health care procedures and having this instruction formalized as IEP objectives.

  11. Integrated Care in Prostate Cancer (ICARE-P): Nonrandomized Controlled Feasibility Study of Online Holistic Needs Assessment, Linking the Patient and the Health Care Team.

    Science.gov (United States)

    Nanton, Veronica; Appleton, Rebecca; Dale, Jeremy; Roscoe, Julia; Hamborg, Thomas; Ahmedzai, Sam H; Arvanitis, Theodoros N; Badger, Douglas; James, Nicholas; Mendelsohn, Richard; Khan, Omar; Parashar, Deepak; Patel, Prashant

    2017-07-28

    clinical teams. Recruitment to the second phase of the study, the feasibility trial, commenced March 2017. To our knowledge, this study is the first in the United Kingdom to trial an online holistic needs assessment for men with prostate cancer, with data shared between patients and primary and secondary care providers. This study addresses recommendations in recent policy documents promoting the importance of data sharing and enhanced communication between care providers as a basis for care integration. We anticipate that this model of care will ultimately provide important benefits for both patients and the National Health Service. International Standard Randomized Controlled Trial Number (ISRCTN): 31380482; http://www.isrctn.com/ISRCTN31380482 (Archived by WebCite at http://www.webcitation.org/6s8I42u5N). ©Veronica Nanton, Rebecca Appleton, Jeremy Dale, Julia Roscoe, Thomas Hamborg, Sam H Ahmedzai, Theodoros N Arvanitis, Douglas Badger, Nicholas James, Richard Mendelsohn, Omar Khan, Deepak Parashar, Prashant Patel. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 28.07.2017.

  12. Pediatricians Transitioning Practices, Youth With Special Health Care Needs in New York State.

    Science.gov (United States)

    Davidson, Lynn F; Chhabra, Rosy; Cohen, Hillel W; Lechuga, Claudia; Diaz, Patricia; Racine, Andrew

    2015-10-01

    To assess current practices of New York State pediatricians as they transition youth with special health care needs to adult-oriented medical care. A survey of New York State pediatricians included 6 critical steps from 2002 consensus statement, 11 essential steps adapted from recent literature, and questions targeting age of starting transition and availability of transition policy. Of 181 respondents, only 11% have a transition policy. Most assist patients in transition process; identify an adult provider (92%); and create portable medical summary (57%). Only 3% start planning process at recommended age. No respondents are compliant with all 6 critical steps; subspecialists were more likely to report compliance to more than 4 steps. Participating pediatricians are making gains, yet effort is needed, to incorporate the essential steps into practice for transitioning youth with special health care needs. Recognition of barriers, use of electronic tools, and clarifying subspecialist's approach, may improve compliance with transition recommendations. © The Author(s) 2015.

  13. Self-care needs in healthcare contexts: how to gather, read and fulfill them

    Directory of Open Access Journals (Sweden)

    Lucia Zannini

    2014-12-01

    Full Text Available In light of a continuing education intervention (entitled “On the other side” conducted with a multi-professional group at a Northern Italian hospital, this paper offers a reflection on educational needs analysis for healthcare professionals. This process has been extensively investigated, including in the context of healthcare training, leading to the call for a multi-method approach to developing professionals’ competencies in the interest of optimizing their patients’ health and quality of life. However, when professionals’ deepest inner need is for self-care to help them cope with the perceived heavy demands of clinical practice, educators may usefully adopt the phenomenological approach, which involves bracketing, the ability to see, taking responsibility and attending to professionals’ emotional experience. The analysis of professionals’ self-care needs should be viewed as a continuous process, to be implemented on an ongoing basis throughout the entire educational intervention, and as a practice that itself requires a caring attitude.

  14. Research needs in allergy

    DEFF Research Database (Denmark)

    Papadopoulos, Nikolaos G; Agache, Ioana; Bavbek, Sevim

    2012-01-01

    ABSTRACT: In less than half a century, allergy, originally perceived as a rare disease, has become a major public health threat, today affecting the lives of more than 60 million people in Europe, and probably close to one billion worldwide, thereby heavily impacting the budgets of public health...... in the field of allergy, in order to achieve sustainable results on prevention, diagnosis and treatment of this most prevalent chronic disease of the 21st century.The European Academy of Allergy and Clinical Immunology (EAACI) is the leading professional organization in the field of allergy, promoting...... excellence in clinical care, education, training and basic and translational research, all with the ultimate goal of improving the health of allergic patients. The European Federation of Allergy and Airways Diseases Patients' Associations (EFA) is a non-profit network of allergy, asthma and Chronic...

  15. Follow-up Care Education and Information: Identifying Cancer Survivors in Need of More Guidance.

    Science.gov (United States)

    O'Malley, Denalee M; Hudson, Shawna V; Ohman-Strickland, Pamela A; Bator, Alicja; Lee, Heather S; Gundersen, Daniel A; Miller, Suzanne M

    2016-03-01

    Cancer survivors engage in cancer screenings and protective health behaviors at suboptimal rates despite their increased risk for future illness. Survivorship care plans and other educational strategies to prepare cancer survivors to adopt engaged roles in managing long-term follow-up care and health risks are needed. In a sample of cancer survivors, we identified patient characteristics and psychosocial predictors associated with increased follow-up care informational needs. Cross-sectional surveys were administered to early-stage breast and prostate survivors (N = 278; 68 % breast) at least 2 years post treatment from four community hospital programs in New Jersey between May 2012 and July 2013. Patient demographics, medical history, psychosocial characteristics (i.e., worries about the future, fear of disease recurrence, and patient activation), and perceptions of oncology and primary care were assessed. African-American survivors (AOR = 2.69, 95 % confidence interval [CI] 1.27-5.68) and survivors with higher comorbidity (AOR =1.16, CI 1.01-1.33) were more likely to want additional information to guide follow-up care. Adjusting for race and comorbidities, survivors who wanted more information to guide their follow-up care reported greater worries about the future (p < 0.05) and fears about disease recurrence (p < 0.05) compared to those who did not want additional information. Results emphasize the need to develop cancer survivorship educational strategies that are both responsive to the needs of specific populations (e.g., African-American survivors and patients with multiple comorbidities) and the psychosocial profiles that motivate requests for more extensive follow-up guidance.

  16. What kind of leadership does integrated care need?

    Science.gov (United States)

    Kelley-Patterson, Deirdre

    2012-01-01

    Primary care clinicians and clinical commissioners are the current focus for much leadership investment and development. In this article I propose that we need to look beyond traditional thinking about effective leader behaviour and conventional approaches to leader development based on this thinking. The paper identifies some of the lessons that can be learnt from both the current academic discussion of collaborative leadership, and from an analysis of successes and failures of leadership within the NHS. Two leadership strategies are considered: the development of communities of practice and the use of connected mini-transformations to generate wider system transformation. In a period of systems change, with potential for conflict between providers and commissioners, these strategies are helpful in encouraging the 'mindfulness' that is needed to ensure integration across the complex landscape of healthcare in London.

  17. Experiences of adults with high-care needs and their family members with housing and support pathways in Australia.

    Science.gov (United States)

    McIntyre, Deborah; Fleming, Jennifer; Foster, Michele; Tweedy, Sean

    2017-09-01

    Many adults aged less than 65 years with high-care needs resulting from acquired disabilities are unable to access age-appropriate housing and support, and reside in residential aged care or live with family members who may struggle to navigate the disability support system. This qualitative study aimed to investigate the experiences of adults with high-care needs and their family members regarding pathways related to housing and support. Two in-depth semi-structured interviews were conducted six months apart with 21 people aged 18 to 65 with high-care needs of varying etiology and living in different housing settings. Nineteen family members involved in decision-making about housing and supports were also interviewed. Thematic data analysis yielded five themes: (1) Traveling in different directions; (2) "the fight, the battle and the war"; (3) willing but wanting; (4) uncertainty and vulnerability; and (5) redefining social roles and relationships. Current disability policy is not satisfying the housing and support requirements of adults with high-care needs and their families. The findings provide rigorous, empirical evidence which indicate the urgent need to improve access to affordable, individualized housing and support packages, including financial, practical and informational support for family members involved in caring roles. Implications for Rehabilitation Individual preferences are an important consideration in housing and support arrangements for younger people with high-care needs alongside needs-based solutions. Individualized funding approaches may provide flexibility of care and choice in housing and support for people with disability. Family members willingly provide substantial informal care, support and advocacy for younger people with high needs but perceive their role as a constant "battle". Payment of family members in recognition of caring work was perceived as a solution to relieve family hardship and ensure optimal care.

  18. The juggling act: Do student nurses who care for dependants need an adapted course? An applied policy research study.

    Science.gov (United States)

    Kiernan, Matthew D; Proud, Carole; Jackson, Sue

    2015-11-01

    In line with many countries worldwide, the Department of Health mandate to Health Education England seeks to promote the diversity of applicants by widening participation in nurse education. A number of studies have explored the experience of non-traditional students undertaking nursing courses. This study aimed to explore and understand the experiences of student nurses undertaking their nurse education whilst caring for dependant family. The study used an applied qualitative research approached based on methods developed for applied social policy research. The study was undertaken in an institution of higher education in the North East of England. The study population consisted of a convenience sample of 14 respondents, 13 female and 1 male. Ten respondents lived with partners and 3 had disabled dependants within the family. The age range of dependent children ranged from 3months to 19years. Data was collected through focus groups and telephone interviews using a semi-structured interview schedule. Framework analysis was used to analyse the data. Three superordinate themes were identified, Altruism and Commitment, Maturity and Family and Social Mobility, that best encapsulate the characteristics that enable this group to function well and complete their nurse education. Analysis identified a highly motivated group of students who's individual accounts showed that their lives, whilst in nurse education, were a constant series of compromises and 'juggling' between the demands of the course and the demands of their families. This group of students do not need an adapted course, but instead wish for a realistic nursing course where expectations are managed in an honest way. Basic common sense and good management of nursing courses will help ensure that this motivated group of people achieve their goals with minimum hardship or difficulties. Copyright © 2015 Elsevier Ltd. All rights reserved.

  19. Home care in Australia: an integrative review.

    Science.gov (United States)

    Palesy, Debra; Jakimowicz, Samantha; Saunders, Carla; Lewis, Joanne

    2018-01-01

    The home care sector comprises one of Australia's fastest growing workforces, yet few papers capture the overall landscape of Australian home care. This integrative review investigates home care with the aim of better understanding care recipients and their needs, funding, and regulation; care worker skills, tasks, demographics, employment conditions, and training needs. Over 2,700 pieces of literature were analyzed to inform this review. Results suggest sector fragmentation and a home care workforce who, although well-placed to improve outcomes for care recipients, are in need of better training and employment support. Suggestions for future research regarding Australian home care include studies that combine both aged and disability aspects of care, more research around care recipients, priority needs and strategies for addressing them, and how best to prepare home care workers for their roles.

  20. Caring communities as collective learning process: findings and lessons learned from a participatory research project in Austria.

    Science.gov (United States)

    Wegleitner, Klaus; Schuchter, Patrick

    2018-04-01

    By now, the public health end-of-life care approach is well established and has induced diverse initiatives-subsumed under the concept of compassionate or caring communities-to engage the community in supporting vulnerable, dying people and their beloved ones. In the light of a participatory research project our paper examines the question: what are the deeper ideas behind caring communities and what constitutes a caring community? A multi-level analysis based on (I) qualitative research with focus groups and interviews with community members within the project; (II) the reflection of the role of participatory research in caring community initiatives, and (III) the meta-analysis of an international expert workshop, which allowed to discuss our experiences and insights in the light of international caring community models and expertise. Our analysis of qualities ("ingredients") of a caring community, from the perspective of community members, highlighted the importance of the co-creation of supportive care relationships in the local care web, through everyday life solidarity in the neighbourhood, appreciating and exchanging the wisdom of care, and also marked the role of professionals as enablers. Participatory research in caring community developments has the potential to engage and empower citizens, and to interlink existential care-stories with questions about the structural and political environments of appropriate end-of-life care. The caring community movement and public health end-of-life care has to maintain their critical potential against the commercialization and fragmentation of care (services), but also without "romanticizing" communities. Prospective caring community progresses need (I) an ecological health-promotion framework for action and (II) social learning processes along the existential experiences and the wisdom of community members, complementing each other. Organizing existential-political care dialogues can contribute to an ethic of caring