Bansler, Jørgen P.; Havn, Erling C.; Kensing, Finn
This paper describes work-in-progress to explore how informa-tion and communication technologies (ICT) can be designed and implemented to provide effective support of shared care programs. The purpose of the project is to develop generic models of shared care applications as well as organizational...
Granlien, Maren Fich; Simonsen, Jesper
: (1) Poor integration with the general practitioners' existing IT systems; (2) low compatibility with general practitioners' work ethic; (3) and discrepancy between the number of diabetes patients and the related need for shared care. We conclude that development of IT-supported shared care must...... the same challenges that led to the same problem: The secondary care sector quickly adopted the system while the primary sector was far more sceptical towards using it. In both cases, we observe a discrepancy of needs satisfied, especially with regard to the primary care sector and its general...
Hanna, K M; Dashiff, C J; Stump, T E; Weaver, M T
Parent-adolescent shared responsibility for diabetes care is advocated by experts to achieve beneficial diabetes and psychosocial outcomes for adolescents with type 1 diabetes. Parental autonomy support may be a way to facilitate this sharing. In this dyadic study, we examined parental diabetes-specific autonomy support experienced by adolescents with type 1 diabetes and their parents (n = 89 dyads), and its association with their experience of shared diabetes care responsibility. Path analysis was used to test an Actor-Partner Interdependence Model for parental autonomy support effects on shared responsibility. This was a secondary analysis of data from 89 parent-early/mid-adolescent dyads. Actor effects were identified. Parents' and adolescents' perceptions of parental autonomy support were associated with their respective reports of shared diabetes care responsibility. One partner effect was identified. Adolescents' reports of parental autonomy support were associated with parents' reports of shared responsibility. Parents and adolescents held similar views of autonomy support but discrepant views of shared responsibility. Older adolescents perceived less parental autonomy support. Increasing parental autonomy support may facilitate parent-adolescent sharing of diabetes care responsibility. Adolescent and parent perceptions influence each other and need to be considered when working with them to strengthen parental autonomy support. © 2012 John Wiley & Sons Ltd.
Miller, Julie; Ward, Carley; Lee, Chaiwoo; D'Ambrosio, Lisa; Coughlin, Joseph
This article explores innovative applications of sharing economy services that have the potential to support a population aging in place, especially the "oldest old," aged 85 and older, and their caregivers. A mixed-methods study conducted by the MIT AgeLab examined perceptions of and experiences with sharing economy services, ultimately finding opportunities and barriers to use. Thus, although sharing economy services have potential to support aging in place, to do so successfully will require reconstructing how older adults, family caregivers, aging service professionals, gerontology educators, and gerontology students conceptualize and deliver care to an aging population. We suggest examples for gerontology educators to integrate into their classrooms to further cultivate an appreciation among students of multiple approaches to intervention, including those that leverage sharing economy and technology-enabled platforms to support older adults and their caregivers.
Floris, Lucia; Irion, Olivier; Bonnet, Jocelyne; Politis Mercier, Maria-Pia; de Labrusse, Claire
According to the woman-centred care model, continuous care by a midwife has a positive impact on satisfaction. Comprehensive support is a model of team midwifery care implemented in the large Geneva University Hospitals in Switzerland, which has organised shared care according to the biomedical model of practice. This model of care insures a follow up by a specific group of midwives, during perinatal period. The goal of this study was to evaluate the satisfaction and outcomes of the obstetric and neonatal care of women who received comprehensive support during pregnancy, childbirth and the postpartum period, and compare them to women who received shared care. This was a prospective comparative study between two models of care in low risk pregnant women. The satisfaction and outcomes of care were evaluated using the French version of the Women's Experiences Maternity Care Scale, two months after giving birth. In total, 186 women in the comprehensive support group and 164 in the control group returned the questionnaire. After adjustment, the responses of those in the comprehensive support programme were strongly associated with optimal satisfaction, and they had a significantly lower epidural rate. No differences were observed between the two groups in the mode of delivery. The satisfaction relative to this support programme was associated with a birth plan for intrapartum and postnatal care. Team midwifery had a positive impact on satisfaction, with no adverse effects on the obstetric and neonatal outcomes, when compared to shared care. Copyright © 2017 Australian College of Midwives. Published by Elsevier Ltd. All rights reserved.
Hartley, Lou Ann
Implementing technology in the clinical setting is not a project but rather a journey in transforming care delivery. As nursing leaders in healthcare and patient care support organizations embrace technology to drive reforms in quality and efficiency, growing opportunities exist to share experiences between these industries. This department submission describes the journey to nursing shared governance from the perspective of an information technology-based company realizing the goal of supporting patient care.
Rogers, M; Zach, L; An, Y; Dalrymple, P
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.
Sebern, Margaret D; Woda, Aimee
Up to half of heart failure (HF) patients are readmitted to hospitals within 6 months of discharge. Many readmissions are linked to inadequate self-care or family support. To improve care, practitioners may need to intervene with both the HF patient and family caregiver. Despite the recognition that family interventions improve patient outcomes, there is a lack of evidence to support dyadic interventions in HF. Thus, the purpose of this study was to test the Shared Care Dyadic Intervention (SCDI) designed to improve self-care in HF. The theoretical base of the SCDI was a construct called Shared Care. Shared Care represents a system of processes used in family care to exchange support. Key findings were as follows: the SCDI was acceptable to both care partners and the data supported improved shared care for both. For the patient, there were improvements in self-care. For the caregivers, there were improvements in relationship quality and health.
D'Ambruoso, Sarah F; Coscarelli, Anne; Hurvitz, Sara; Wenger, Neil; Coniglio, David; Donaldson, Dusty; Pietras, Christopher; Walling, Anne M
Our case describes the efforts of team members drawn from oncology, palliative care, supportive care, and primary care to assist a woman with advanced cancer in accepting care for her psychosocial distress, integrating prognostic information so that she could share in decisions about treatment planning, involving family in her care, and ultimately transitioning to hospice. Team members in our setting included a medical oncologist, oncology nurse practitioner, palliative care nurse practitioner, oncology social worker, and primary care physician. The core members were the patient and her sister. Our team grew organically as a result of patient need and, in doing so, operationalized an explicitly shared understanding of care priorities. We refer to this shared understanding as a shared mental model for care delivery, which enabled our team to jointly set priorities for care through a series of warm handoffs enabled by the team's close proximity within the same clinic. When care providers outside our integrated team became involved in the case, significant communication gaps exposed the difficulty in extending our shared mental model outside the integrated team framework, leading to inefficiencies in care. Integration of this shared understanding for care and close proximity of team members proved to be key components in facilitating treatment of our patient's burdensome cancer-related distress so that she could more effectively participate in treatment decision making that reflected her goals of care.
In light of future challenges, such as growing numbers of elderly, increase in chronic diseases, insufficient health care budgets and problems with staff recruitment for the health-care sector, information and communication technology (ICT) becomes a possible means to meet these challenges. Organizational changes such as the decentralization of the health-care system lead to a shift from in-hospital to both advanced and basic home health care. Advanced medical technologies provide solutions for distant home care in form of specialist consultations and home monitoring. Furthermore, the shift towards home health care will increase mobile work and the establishment of shared care teams which require ICT-based solutions that support ubiquitous information access and cooperative work. Clinical documentation and decision support systems are the main ICT-based solutions of interest in the context of ubiquitous computing for shared care environments. This paper therefore describes the prerequisites for clinical documentation and decision support at the point of care, the impact of mobility on the documentation process, and how the introduction of ICT-based solutions will influence organizations and people. Furthermore, the role of dentistry in shared-care environments is discussed and illustrated in the form of a future scenario.
Richesson, Rachel L; Smerek, Michelle M; Blake Cameron, C
The ability to reproducibly identify clinically equivalent patient populations is critical to the vision of learning health care systems that implement and evaluate evidence-based treatments. The use of common or semantically equivalent phenotype definitions across research and health care use cases will support this aim. Currently, there is no single consolidated repository for computable phenotype definitions, making it difficult to find all definitions that already exist, and also hindering the sharing of definitions between user groups. Drawing from our experience in an academic medical center that supports a number of multisite research projects and quality improvement studies, we articulate a framework that will support the sharing of phenotype definitions across research and health care use cases, and highlight gaps and areas that need attention and collaborative solutions. An infrastructure for re-using computable phenotype definitions and sharing experience across health care delivery and clinical research applications includes: access to a collection of existing phenotype definitions, information to evaluate their appropriateness for particular applications, a knowledge base of implementation guidance, supporting tools that are user-friendly and intuitive, and a willingness to use them. We encourage prospective researchers and health administrators to re-use existing EHR-based condition definitions where appropriate and share their results with others to support a national culture of learning health care. There are a number of federally funded resources to support these activities, and research sponsors should encourage their use.
The Danish National Board of Health has recently released a report that is intended to mark the start of a new project to establish it support for shared care in diabetes. In this paper I raise a number of concerns where lack of attention towards participation from prospective users constitute...
Sada, Yvonne; Street, Richard L.; Singh, Hardeep; Shada, Rachel; Naik, Aanand D.
Objective To explore perceptions of primary care physicians’ (PCPs) and oncologists’ roles, responsibilities, and patterns of communication related to shared cancer care in three integrated health systems that used electronic health records (EHRs). Study design Qualitative study. Methods We conducted semi-structured interviews with ten early stage colorectal cancer patients and fourteen oncologists and PCPs. Sample sizes were determined by thematic saturation. Dominant themes and codes were identified and subsequently applied to all transcripts. Results Physicians reported that EHRs improved communication within integrated systems, but communication with physicians outside their system was still difficult. PCPs expressed uncertainty about their role during cancer care, even though medical oncologists emphasized the importance of co-morbidity control during cancer treatment. Both patients and physicians described additional roles for PCPs, including psychological distress support and behavior modification. Conclusions Integrated systems that use EHRs likely facilitate shared cancer care through improved PCP-oncologist communication. However, strategies to facilitate a more active role for PCPs in managing co-morbidities, psychological distress and behavior modification, as well as to overcome communication challenges between physicians not practicing within the same integrated system, are still needed to improve shared cancer care. PMID:21615196
Agyapong, Vincent Israel Opoku
Objective. The study aims to explore the views of General Practitioners in Ireland on shared care between specialised psychiatric services and primary care. Method. A self-administered questionnaire was designed and posted to 400 randomly selected General Practitioners working in Ireland. Results. Of the respondents, 189 (94%) reported that they would support a general policy on shared care between primary care and specialised psychiatric services for patients who are stable on their treatment. However, 124 (61.4%) reported that they foresaw difficulties for patients in implementing such a policy including: a concern that primary care is not adequately resourced with allied health professionals to support provision of psychiatric care (113, 53.2%); a concern this would result in increased financial burden on some patients (89, 48.8%); a lack of adequate cooperation between primary care and specialised mental health services (84, 41.8%); a concern that some patients may lack confidence in GP care (55, 27.4%); and that primary care providers are not adequately trained to provide psychiatric care (29, 14.4% ). Conclusion. The majority of GPs in Ireland would support a policy of shared care of psychiatric patients; however they raise significant concerns regarding practical implications of such a policy in Ireland.
Lim, Anita Yn; Tan, Chuen Seng; Low, Bernadette Pl; Lau, Tang Ching; Tan, Tze Lee; Goh, Lee Gan; Teng, Gim Gee
Singapore's rapidly ageing population and chronic disease burden at public hospital specialist clinics herald a silver tsunami. In Singapore, "right siting" aims to manage stable chronic disease in primary care at a lower cost. To improve the quality of rheumatology care, we created shared care between rheumatologist and family physician to reduce hospital visits. Clinical practice improvement methodology was used to structure shared care of stable patients between hospital rheumatologists and eleven community family physicians; one ran a hospital clinic. A case manager coordinated the workflow. About 220 patients entered shared care over 29 months. Patients without hospital subsidies (private patients) and private family physicians independently predicted successful shared care, defined as one cycle of alternating care. Our shared care model incorporated a case manager, systematic workflows, patient selection criteria, willing family physician partners and rheumatologists in the absence of organizational integration. Health care affordability impacts successful shared care. Government subsidy hindered right siting to private primary care. Financing systems in Singapore, at health policy level, must allow transfer of hospital subsidies to primary care, both private and public, to make it more affordable than hospital care. Structural integration will create a seamless continuum between hospital and primary care.
Anita YN Lim
Full Text Available Introduction: Singapore's rapidly ageing population and chronic disease burden at public hospital specialist clinics herald a silver tsunami. In Singapore, “right siting” aims to manage stable chronic disease in primary care at a lower cost. To improve the quality of rheumatology care, we created shared care between rheumatologist and family physician to reduce hospital visits. Methods: Clinical practice improvement methodology was used to structure shared care of stable patients between hospital rheumatologists and eleven community family physicians; one ran a hospital clinic. A case manager coordinated the workflow. Results: About 220 patients entered shared care over 29 months. Patients without hospital subsidies (private patients and private family physicians independently predicted successful shared care, defined as one cycle of alternating care. Discussion: Our shared care model incorporated a case manager, systematic workflows, patient selection criteria, willing family physician partners and rheumatologists in the absence of organizational integration. Health care affordability impacts successful shared care. Government subsidy hindered right siting to private primary care. Conclusions: Financing systems in Singapore, at health policy level, must allow transfer of hospital subsidies to primary care, both private and public, to make it more affordable than hospital care. Structural integration will create a seamless continuum between hospital and primary care.
Anita YN Lim
Full Text Available Introduction: Singapore's rapidly ageing population and chronic disease burden at public hospital specialist clinics herald a silver tsunami. In Singapore, “right siting” aims to manage stable chronic disease in primary care at a lower cost. To improve the quality of rheumatology care, we created shared care between rheumatologist and family physician to reduce hospital visits.Methods: Clinical practice improvement methodology was used to structure shared care of stable patients between hospital rheumatologists and eleven community family physicians; one ran a hospital clinic. A case manager coordinated the workflow.Results: About 220 patients entered shared care over 29 months. Patients without hospital subsidies (private patients and private family physicians independently predicted successful shared care, defined as one cycle of alternating care.Discussion: Our shared care model incorporated a case manager, systematic workflows, patient selection criteria, willing family physician partners and rheumatologists in the absence of organizational integration. Health care affordability impacts successful shared care. Government subsidy hindered right siting to private primary care.Conclusions: Financing systems in Singapore, at health policy level, must allow transfer of hospital subsidies to primary care, both private and public, to make it more affordable than hospital care. Structural integration will create a seamless continuum between hospital and primary care.
Winthereik, Brit Ross
Purpose – The paper seeks to examine how an online maternity record involving pregnant women worked as a means to create shared maternity care. Design/methodology/approach – Ethnographic techniques have been used. The paper adopts a theoretical/methodological framework based on science and techno......Purpose – The paper seeks to examine how an online maternity record involving pregnant women worked as a means to create shared maternity care. Design/methodology/approach – Ethnographic techniques have been used. The paper adopts a theoretical/methodological framework based on science...... and technology studies. Findings – The paper shows how a version of “the responsible patient” emerges from the project which is different from the version envisioned by the project organisation. The emerging one is concerned with the boundary between primary and secondary sector care, and not with the boundary......, IT designers and project managers should attend to the specific ways in which boundaries are inevitably enacted and to the ways in which care is already shared. This will provide them with opportunities to use the potentials of new identities and concerns that emerge from changing the organisation...
Willcocks, Stephen George
Purpose The purpose of this paper is to explore the relevance of shared leadership to multi-disciplinary cancer care. It examines the policy background and applies concepts from shared leadership to this context. It includes discussion of the implications and recommendations. Design/methodology/approach This is a conceptual paper examining policy documents and secondary literature on the topic. While it focuses on the UK National Health Services, it is also relevant to other countries given they follow a broadly similar path with regard to multi-disciplinary working. Findings The paper suggests that shared leadership is a possible way forward for multi-disciplinary cancer care, particularly as policy developments are supportive of this. It shows that a shared perspective is likely to be beneficial to the further development of multi-disciplinary working. Research limitations/implications Adopting shared leadership needs to be explored further using appropriate empirical research. Practical implications The paper offers comments on the implications of introducing shared leadership and makes recommendations including being aware of the barriers to its implementation. Originality/value The paper offers an alternative view on leadership in the health-care context.
Tenniglo, L J A; Loeffen, E A H; Kremer, L C M; Font-Gonzalez, A; Mulder, R L; Postma, A; Naafs-Wilstra, M C; Grootenhuis, M A; van de Wetering, M D; Tissing, W J E
Intensive therapies in pediatric malignancies increased survival rates but also occurrence of treatment-related morbidities. Therefore, supportive care fulfills an increasingly important role. In planning development of guidelines with incorporation of shared decision making, we noticed that little is known about the needs and preferences of patients and their parents. Our goals were therefore to investigate (1) which supportive care topics patients and parents regard as most important and (2) the preferred role they wish to fulfill in decision making. This qualitative study consisted of three focus groups (two traditional, one online) with patients and parents of two Dutch pediatric oncology centers. Data were transcribed as simple verbatim and analyzed using thematic analysis. Eleven adolescent patients and 18 parents shared detailed views on various aspects of supportive care. Themes of major importance were communication between patient and physician (commitment, accessibility, proactive attitude of physicians), well-timed provision of information, and the suitability and accessibility of psychosocial care. In contrast to prioritized supportive care topics by medical professionals, somatic issues (e.g., febrile neutropenia) were infrequently addressed. Patients and parents preferred to be actively involved in decision making in selected topics, such as choice of analgesics and anti-emetics, but not in, e.g., choice of antibiotics. Children with cancer and parents were provided a valuable insight into their views regarding supportive care and shared decision making. These results have important implications towards improving supportive care, both in selecting topics for guideline development and incorporating preferences of patients and parents herein.
Litchman, Michelle L; Allen, Nancy A; Colicchio, Vanessa D; Wawrzynski, Sarah E; Sparling, Kerri M; Hendricks, Krissa L; Berg, Cynthia A
Little research exists regarding how real-time continuous glucose monitoring (RT-CGM) data sharing plays a role in the relationship between patients and their care partners. To (1) identify the benefits and challenges related to RT-CGM data sharing from the patient and care partner perspective and (2) to explore the number and type of individuals who share and follow RT-CGM data. This qualitative content analysis was conducted by examining publicly available blogs focused on RT-CGM and data sharing. A thematic analysis of blogs and associated comments was conducted. A systematic appraisal of personal blogs examined 39 blogs with 206 corresponding comments. The results of the study provided insight about the benefits and challenges related to individuals with diabetes sharing their RT-CGM data with a care partner(s). The analysis resulted in three themes: (1) RT-CGM data sharing enhances feelings of safety, (2) the need to communicate boundaries to avoid judgment, and (3) choice about sharing and following RT-CGM data. RT-CGM data sharing occurred within dyads (n = 46), triads (n = 15), and tetrads (n = 2). Adults and children with type 1 diabetes and their care partners are empowered by the ability to share and follow RT-CGM data. Our findings suggest that RT-CGM data sharing between an individual with diabetes and their care partner can complicate relationships. Healthcare providers need to engage patients and care partners in discussions about best practices related to RT-CGM sharing and following to avoid frustrations within the relationship.
as other kids. These differences are often explained by pointing at individual or family inheritance. This paper takes the perspective that social exclusion is multi-dimensional, and the cross-professional structuring of children´s everyday life plays an important role. Processes of social exclusion...... and institutions. These groups of professionals contribute to the children’s everyday lives according to historically developed divisions of responsibility. It is a daily challenge to professionals, how they jointly support children in care so the children can be part of children´s communities in the places where......The responsibility of children in care is shared by a number of professionals placed in different contexts. Parents are responsible for the “big issues” in these children’s lives, while many professionals are involved in the children´s everyday life across home, residential home, schools...
Curtis, Penny; Northcott, Andy
To explore whether and how spatial aspects of children's hospital wards (single and shared rooms) impact upon family-centred care. Family-centred care has been widely adopted in paediatric hospitals internationally. Recent hospital building programmes in many countries have prioritised the provision of single rooms over shared rooms. Limited attention has, however, been paid to the potential impact of spatial aspects of paediatric wards on family-centred care. Qualitative, ethnographic. Phase 1; observation within four wards of a specialist children's hospital. Phase 2; interviews with 17 children aged 5-16 years and 60 parents/carers. Sixty nursing and support staff also took part in interviews and focus group discussions. All data were subjected to thematic analysis. Two themes emerged from the data analysis: 'role expectations' and 'family-nurse interactions'. The latter theme comprised three subthemes: 'family support needs', 'monitoring children's well-being' and 'survey-assess-interact within spatial contexts'. Spatial configurations within hospital wards significantly impacted upon the relationships and interactions between children, parents and nurses, which played out differently in single and shared rooms. Increasing the provision of single rooms within wards is therefore likely to directly affect how family-centred care manifests in practice. Nurses need to be sensitive to the impact of spatial characteristics, and particularly of single and shared rooms, on families' experiences of children's hospital wards. Nurses' contribution to and experience of family-centred care can be expected to change significantly when spatial characteristics of wards change and, as is currently the vogue, hospitals maximise the provision of single rather than shared rooms. © 2016 John Wiley & Sons Ltd.
Hoeft, Theresa J; Fortney, John C; Patel, Vikram; Unützer, Jürgen
Rural areas persistently face a shortage of mental health specialists. Task shifting, or task sharing, is an approach in global mental health that may help address unmet mental health needs in rural and other low-resource areas. This review focuses on task-shifting approaches and highlights future directions for research in this area. Systematic review on task sharing of mental health care in rural areas of high-income countries included: (1) PubMed, (2) gray literature for innovations not yet published in peer-reviewed journals, and (3) outreach to experts for additional articles. We included English language articles published before August 31, 2013, on interventions sharing mental health care tasks across a team in rural settings. We excluded literature: (1) from low- and middle-income countries, (2) involving direct transfer of care to another provider, and (3) describing clinical guidelines and shared decision-making tools. The review identified approaches to task sharing focused mainly on community health workers and primary care providers. Technology was identified as a way to leverage mental health specialists to support care across settings both within primary care and out in the community. The review also highlighted how provider education, supervision, and partnerships with local communities can support task sharing. Challenges, such as confidentiality, are often not addressed in the literature. Approaches to task sharing may improve reach and effectiveness of mental health care in rural and other low-resource settings, though important questions remain. We recommend promising research directions to address these questions. © 2017 National Rural Health Association.
Fortnum, Debbie; Smolonogov, Tatiana; Walker, Rachael; Kairaitis, Luke; Pugh, Debbie
For patients with chronic kidney disease (CKD) who are progressing to end-stage kidney disease (ESKD) a decision of whether to undertake dialysis or conservative care is a critical component of the patient journey. Shared decision making for complex decisions such as this could be enhanced by a decision aid, a practice which is well utilised in other disciplines but limited for nephrology. A multidisciplinary team in Australia and New Zealand (ANZ) utilised current decision-making theory and best practice to develop the 'My Kidneys, My Choice', a decision aid for the treatment of kidney disease. A patient-centred, five-sectioned tool is now complete and freely available to all ANZ units to support the ESKD education and shared decision-making process. Distribution and education have occurred across ANZ and evaluation of the decision aid in practice is in the first phase. Development of a new tool such as an ESKD decision aid requires vision, multidisciplinary input and ongoing implementation resources. This tool is being integrated into ANZ, ESKD education practice and is promoting the philosophy of shared decision making. © 2014 European Dialysis and Transplant Nurses Association/European Renal Care Association.
Roderick L B Neame
Full Text Available Background The protection of personal information privacy has become one of the most pressing security concerns for record keepers. Many institutions have yet to implement the essential infrastructure for data privacy protection and patient control when accessing and sharing data; even more have failed to instil a privacy and security awareness mindset and culture amongst their staff. Increased regulation, together with better compliance monitoring has led to the imposition of increasingly significant monetary penalties for failures to protect privacy. Objective There is growing pressure in clinical environments to deliver shared patient care and to support this with integrated information. This demands that more information passes between institutions and care providers without breaching patient privacy or autonomy. This can be achieved with relatively minor enhancements of existing infrastructures and does not require extensive investment in inter-operating electronic records: indeed such investments to date have been shown not to materially improve data sharing.Requirements for Privacy There is an ethical duty as well as a legal obligation on the part of care providers (and record keepers to keep patient information confidential and to share it only with the authorisation of the patient. To achieve this information storage and retrieval, and communication systems must be appropriately configured. Patients may consult clinicians anywhere and at any time: therefore their data must be available for recipient-driven retrieval under patient control and kept private.
Eriksson, Henrik; Salzmann-Erikson, Martin
Today's parents seek out social support on the Internet. A key motivation behind the choice to go online is the need for more experience based information. In recent years, new fathers have increasingly taken on an active parental role. Men's support for their caring activities for infants on the Internet needs attention. The aim was to describe communication about caring activities for infants among men who visited an Internet-based forum for fathers and elaborate on the dimensions of support available in the forum. An archival and cross-sectional observational forum study was undertaken using principles for conducting ethnographic research online: "nethnography". A total of 1203 pages of data from an Internet forum for fathers were gathered and analysed. Support for a caring fatherhood in cyberspace can be understood as fathers' communicating encouragement, confirmation and advice. The findings show that important ways of providing support through the forum included a reciprocal sharing of concerns - how to be a better father - in relation to caring for an infant. Concerns for their child's well-being and shared feelings of joy and distress in everyday life were recurrent supportive themes in the communication. Information gained from contacting others in similar situations is one important reason for the fathers' use of the Internet. Support offered in this kind of forum can be considered as a complement to formal support. Professionals can use it to provide choices for fathers who are developing themselves as caregivers without downplaying the parental support offered by formal health care regimes. FURTHER RESEARCH: Online support will probably be one of the main supporting strategies for fathers in Scandinavia. Caring and nursing researchers need to closely monitor support activities that develop, and over time, as these ill likely become an important source of support for people. © 2012 The Authors. Scandinavian Journal of Caring Sciences © 2012 Nordic
Linnarsson, R; Nordgren, K
1. INTRODUCTION. A computer-based patient record (CPR) system, Swedestar, has been developed for use in primary health care. The principal aim of the system is to support continuous quality improvement through improved information handling, improved decision-making, and improved procedures for quality assurance. The Swedestar system has evolved during a ten-year period beginning in 1984. 2. SYSTEM DESIGN. The design philosophy is based on the following key factors: a shared, problem-oriented patient record; structured data entry based on an extensive controlled vocabulary; advanced search and query functions, where the query language has the most important role; integrated decision support for drug prescribing and care protocols and guidelines; integrated procedures for quality assurance. 3. A SHARED PROBLEM-ORIENTED PATIENT RECORD. The core of the CPR system is the problem-oriented patient record. All problems of one patient, recorded by different members of the care team, are displayed on the problem list. Starting from this list, a problem follow-up can be made, one problem at a time or for several problems simultaneously. Thus, it is possible to get an integrated view, across provider categories, of those problems of one patient that belong together. This shared problem-oriented patient record provides an important basis for the primary care team work. 4. INTEGRATED DECISION SUPPORT. The decision support of the system includes a drug prescribing module and a care protocol module. The drug prescribing module is integrated with the patient records and includes an on-line check of the patient's medication list for potential interactions and data-driven reminders concerning major drug problems. Care protocols have been developed for the most common chronic diseases, such as asthma, diabetes, and hypertension. The patient records can be automatically checked according to the care protocols. 5. PRACTICAL EXPERIENCE. The Swedestar system has been implemented in a
Hede, Børge; Elmelund Poulsen,, Johan; Christophersen, Rasmus
Shared Oral Care - Forebyggelse af orale sygdomme på plejecentre Introduktion og formål: Mangelfuld mundhygiejne hos plejekrævende ældre er et alment og veldokumenteret sundhedsproblem, der kan føre til massiv udvikling af tandsygdomme, og som yderligere kan være medvirkende årsag til alvorlige...... ressourceanvendelse er muligt at skabe en betydeligt forbedret mundhygiejne hos plejekrævende ældre Key words: Geriatric dentistry, nursing home, community health services, prevention, situated learning...
Full Text Available Hospice care has been proved to result in changes to the medical behaviors of terminally ill patients. The aim of this study was to evaluate the effects and medical behavior changes of hospice-shared care intervention among terminally ill gastric cancer patients.A total of 174 patients who died of gastric cancer between 2012 and 2014 were identified. These patients were divided into two groups: a hospice-shared care group (n = 93 and a control group (n = 81.Among the 174 patients, 84% had advanced stage (stage III or stage IV cancer. The females and the patients cared by medical oncologists had a higher percentage of hospice-shared care than the males (71% vs 44%, p = 0.001 and those cared by other physicians (63% vs 41%, p = 0.004. Compared to the control group, the hospice-shared care group underwent lower incidence of life sustaining or aggressive medical treatments, including intensive care unit admission (2% vs 26%, p<0.001, intubation (1% vs 27%, p<0.001, cardiopulmonary-cerebral resuscitation (0% vs 11%, p = 0.001, ventilator use (1% vs 27%, p<0.001, inotropic agent use (8% vs 46%, p<0.001, total or partial parenteral nutrition use (38% vs. 58%, p = 0.029, and blood transfusion (45% vs 74%, p<0.001. Besides, the hospice-shared care group had a higher percentage of palliative treatments than the control group, including signed Do-Not-Resuscitate (DNR orders (95% vs 37%, p<0.001, receiving home hospice care (16% vs 1%, p<0.001, and indicating home as the realistically preferred place of death (41% vs 19%, p = 0.001. The hospice ward admission rate in the hospice-shared care group increased from 30% to 53% from 2012 to 2014.The use of hospice-shared care for gastric cancer patients could increase the rate of signed DNR orders, decrease the use of life sustaining and aggressive/palliative treatments, and improve quality of life.
Estep, Jerry D; Trachtenberg, Barry H; Loza, Laurie P; Bruckner, Brian A
Continuous-flow left ventricular assist devices (CF-LVADs) have been clinically adopted as a long-term standard of care therapy option for patients with end-stage heart failure. For many patients, shared care between the care providers at the implanting center and care providers in the community in which the patient resides is a clinical necessity. The aims of this review are to (1) provide a rationale for the outpatient follow-up exam and surveillance testing used at our center to monitor patients supported by the HeartMate II(®) CF-LVAD (Thoratec Corporation, Pleasanton, CA) and (2) provide the protocol/algorithms we use for blood pressure, driveline exit site, LVAD alarm history, surveillance blood work, and echocardiography monitoring in this patient population. In addition, we define our partnership outpatient follow-up protocol and the "shared care" specific responsibilities we use with referring health care providers to best manage many of our patients.
Huang, Kun-Siang; Wang, Shih-Ho; Chuah, Seng-Kee; Rau, Kun-Ming; Lin, Yu-Hung; Hsieh, Meng-Che; Shih, Li-Hsueh; Chen, Yen-Hao
Hospice care has been proved to result in changes to the medical behaviors of terminally ill patients. The aim of this study was to evaluate the effects and medical behavior changes of hospice-shared care intervention among terminally ill gastric cancer patients. A total of 174 patients who died of gastric cancer between 2012 and 2014 were identified. These patients were divided into two groups: a hospice-shared care group (n = 93) and a control group (n = 81). Among the 174 patients, 84% had advanced stage (stage III or stage IV) cancer. The females and the patients cared by medical oncologists had a higher percentage of hospice-shared care than the males (71% vs 44%, p = 0.001) and those cared by other physicians (63% vs 41%, p = 0.004). Compared to the control group, the hospice-shared care group underwent lower incidence of life sustaining or aggressive medical treatments, including intensive care unit admission (2% vs 26%, pgastric cancer patients could increase the rate of signed DNR orders, decrease the use of life sustaining and aggressive/palliative treatments, and improve quality of life.
van Ooteghem, Jan; Tesch, Tom; Verbrugge, Sofie; Ackaert, Ann; Colle, Didier; Pickavet, Mario; Demeester, Piet
In order to address the increasing costs of providing care to the growing group of elderly, efficiency gains through eCare solutions seem an obvious solution. Unfortunately not many techno-economic business models to evaluate the return of these investments are available. The construction of a business case for care for the elderly as they move through different levels of dependency and the effect of introducing an eCare service, is the intended application of the model. The simulation model presented in this paper allows for modeling evolution of market shares of competing care providers. Four tiers are defined, based on the dependency level of the elderly, for which the market shares are determined. The model takes into account available capacity of the different care providers, in- and outflow distribution between tiers and churn between providers within tiers.
Currently a fifth of the population die in care homes and most residents are in the final year of life. Spiritual care is recognised as important (The National Institute for Health and Care Excellence [NICE] Quality Standards, Leadership Alliance) yet there is little teaching for care homes' staff in this vital area. Spiritual care is intrinsic in the Gold Standards Framework (GSF) programmes, it is one of the standards for GSF accreditation, yet often health and social care professionals are unaware or unconfident in this area, with a tendency to confuse spirituality with religion. To develop a Spiritual Care course to supplement the range of GSF programmes, especially for care homes, to increase confidence and ability of staff caring for people nearing the end of life. While we need to bring professional expertise to bear in our caring, we must also bring our humanity, our lack of answers and our ability to listen with mindfulness and compassion. Working in collaboration with Staffordshire University, blending academic and practical expertise, we developed a one day workshop and filmed a four-module distance-learning course. Evaluations have shown a broadening of awareness and perspective, increased confidence in assessing and meeting spiritual needs, greater self-care and resilience amongst staff and a more creative interpretation of spiritual care helping to meet the needs of care homes' residents. Early use of this spiritual care workshop and course for care homes' staff has been well received and encouraging. Sharing our common human experience of loss and mortality leads to greater resilience through inner transformation. © 2015, 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.
Lawn, Sharon; Delany, Toni; Sweet, Linda
Our aim was to document current communication and information-sharing practices and to identify the barriers and enablers to good practices within the context of care planning for chronic condition management. Further aims were to make recommendations about how changes to policy and practice can ......, and the expectation of collaborative and effective communication of care that underpins it, within their practice with patients and all members of the care team. To assist in meeting these aims, we make several recommendations....... as a communication and information-sharing tool may be achieved through practice initiatives that reflect the rhetoric of collaborative person-centred care, which is already supported through existing policy in Australia. General practitioners and other primary care providers should operationalise care planning...
Lawn, Sharon; Delany, Toni; Sweet, Linda; Battersby, Malcolm; Skinner, Timothy
Our aim was to document current communication and information-sharing practices and to identify the barriers and enablers to good practices within the context of care planning for chronic condition management. Further aims were to make recommendations about how changes to policy and practice can improve communication and information sharing in primary health care. A mixed-method approach was applied to seek the perspectives of patients and primary health-care workers across Australia. Data was collected via interviews, focus groups, non-participant observations and a national survey. Data analysis was performed using a mix of thematic, discourse and statistical approaches. Central barriers to effective communication and information sharing included fragmented communication, uncertainty around client and interagency consent, and the unacknowledged existence of overlapping care plans. To be most effective, communication and information sharing should be open, two-way and inclusive of all members of health-care teams. It must also only be undertaken with the appropriate participant consent, otherwise this has the potential to cause patients harm. Improvements in care planning as a communication and information-sharing tool may be achieved through practice initiatives that reflect the rhetoric of collaborative person-centred care, which is already supported through existing policy in Australia. General practitioners and other primary care providers should operationalise care planning, and the expectation of collaborative and effective communication of care that underpins it, within their practice with patients and all members of the care team. To assist in meeting these aims, we make several recommendations.
Zhang, Jianguo; Zhang, Kai; Yang, Yuanyuan; Sun, Jianyong; Ling, Tonghui; Wang, Mingqing; Bak, Peter
IHE XDS-I profile proposes an architecture model for cross-enterprise medical image sharing, but there are only a few clinical implementations reported. Here, we investigate three pilot studies based on the IHE XDS-I profile to see whether we can use this architecture as a foundation for image sharing solutions in a variety of health-care settings. The first pilot study was image sharing for cross-enterprise health care with federated integration, which was implemented in Huadong Hospital and Shanghai Sixth People's Hospital within the Shanghai Shen-Kang Hospital Management Center; the second pilot study was XDS-I-based patient-controlled image sharing solution, which was implemented by the Radiological Society of North America (RSNA) team in the USA; and the third pilot study was collaborative imaging diagnosis with electronic health-care record integration in regional health care, which was implemented in two districts in Shanghai. In order to support these pilot studies, we designed and developed new image access methods, components, and data models such as RAD-69/WADO hybrid image retrieval, RSNA clearinghouse, and extension of metadata definitions in both the submission set and the cross-enterprise document sharing (XDS) registry. We identified several key issues that impact the implementation of XDS-I in practical applications, and conclude that the IHE XDS-I profile is a theoretically good architecture and a useful foundation for medical image sharing solutions across multiple regional health-care providers.
Neame, Roderick L B
The protection of personal information privacy has become one of the most pressing security concerns for record keepers: this will become more onerous with the introduction of the European General Data Protection Regulation (GDPR) in mid-2014. Many institutions, both large and small, have yet to implement the essential infrastructure for data privacy protection and patient consent and control when accessing and sharing data; even more have failed to instil a privacy and security awareness mindset and culture amongst their staff. Increased regulation, together with better compliance monitoring, has led to the imposition of increasingly significant monetary penalties for failure to protect privacy: these too are set to become more onerous under the GDPR, increasing to a maximum of 2% of annual turnover. There is growing pressure in clinical environments to deliver shared patient care and to support this with integrated information. This demands that more information passes between institutions and care providers without breaching patient privacy or autonomy. This can be achieved with relatively minor enhancements of existing infrastructures and does not require extensive investment in inter-operating electronic records: indeed such investments to date have been shown not to materially improve data sharing. REQUIREMENTS FOR PRIVACY: There is an ethical duty as well as a legal obligation on the part of care providers (and record keepers) to keep patient information confidential and to share it only with the authorisation of the patient. To achieve this information storage and retrieval, communication systems must be appropriately configured. There are many components of this, which are discussed in this paper. Patients may consult clinicians anywhere and at any time: therefore, their data must be available for recipient-driven retrieval (i.e. like the World Wide Web) under patient control and kept private: a method for delivering this is outlined.
Brown, Edwina A; Bekker, Hilary L; Davison, Sara N; Koffman, Jonathan; Schell, Jane O
Historic migration and the ever-increasing current migration into Western countries have greatly changed the ethnic and cultural patterns of patient populations. Because health care beliefs of minority groups may follow their religion and country of origin, inevitable conflict can arise with decision making at the end of life. The principles of truth telling and patient autonomy are embedded in the framework of Anglo-American medical ethics. In contrast, in many parts of the world, the cultural norm is protection of the patient from the truth, decision making by the family, and a tradition of familial piety, where it is dishonorable not to do as much as possible for parents. The challenge for health care professionals is to understand how culture has enormous potential to influence patients' responses to medical issues, such as healing and suffering, as well as the physician-patient relationship. Our paper provides a framework of communication strategies that enhance crosscultural competency within nephrology teams. Shared decision making also enables clinicians to be culturally competent communicators by providing a model where clinicians and patients jointly consider best clinical evidence in light of a patient's specific health characteristics and values when choosing health care. The development of decision aids to include cultural awareness could avoid conflict proactively, more productively address it when it occurs, and enable decision making within the framework of the patient and family cultural beliefs. Copyright © 2016 by the American Society of Nephrology.
Boggatz, Thomas; Dijkstra, Ate; Lohrmann, Christa; Dassen, Theo
Aim. This paper is a report of a concept analysis to identify a meaning of care dependency that can be shared by both care givers and care recipients. Background. Care dependency can be perceived from the care recipient's and the care giver's perspective. To allow for comparisons, both sides should
Perera, Gihan; Holbrook, Anne; Thabane, Lehana; Foster, Gary; Willison, Donald J
To determine how patients and physicians balance the perceived benefits and harms of sharing electronic health data for patient care and for secondary purposes. Before-after survey of patients and providers in practices using electronic medical records (EMRs) enrolled in a clinical trial in Ontario, Canada. Outcomes were measured using the Health Information Privacy Questionnaire (HIPQ) at baseline and end of study. Thirteen questions in 4 general domains investigated attitudes towards the privacy of EMRs, outsider's use of patient's health information, the sharing of patient's information within the health care system, and the overall perception of benefits versus harms of computerization in health care. 511 patients (mean age 60.3 years, 49.6% female) and 46 physicians (mean age 47.2 years, 37.0% female) participated. Most (>90%) supported the computerized sharing of the patient's health records among their health care professionals and to provide clinical advice. Fewer agreed that the patient's de-identified information should be shared outside of the health care circle (records can be keep more private than paper records (38-50%). Overall, a majority (58% patients, 70% physicians) believed that the benefits of computerization were greater than the risks of confidentiality loss. This was especially true for patients who were frequent computer users. While these primary care physicians and their patients valued the clinical features of EMRs, a substantial minority have concerns about the secondary use of de-identified information. Copyright Â© 2010 Elsevier Ireland Ltd. All rights reserved.
Collins, Sarah; Klinkenberg-Ramirez, Stephanie; Tsivkin, Kira; Mar, Perry L; Iskhakova, Dina; Nandigam, Hari; Samal, Lipika; Rocha, Roberto A
Develop a prototype of an interprofessional terminology and information model infrastructure that can enable care planning applications to facilitate patient-centered care, learn care plan linkages and associations, provide decision support, and enable automated, prospective analytics. The study steps included a 3 step approach: (1) Process model and clinical scenario development, and (2) Requirements analysis, and (3) Development and validation of information and terminology models. Components of the terminology model include: Health Concerns, Goals, Decisions, Interventions, Assessments, and Evaluations. A terminology infrastructure should: (A) Include discrete care plan concepts; (B) Include sets of profession-specific concerns, decisions, and interventions; (C) Communicate rationales, anticipatory guidance, and guidelines that inform decisions among the care team; (D) Define semantic linkages across clinical events and professions; (E) Define sets of shared patient goals and sub-goals, including patient stated goals; (F) Capture evaluation toward achievement of goals. These requirements were mapped to AHRQ Care Coordination Measures Framework. This study used a constrained set of clinician-validated clinical scenarios. Terminology models for goals and decisions are unavailable in SNOMED CT, limiting the ability to evaluate these aspects of the proposed infrastructure. Defining and linking subsets of care planning concepts appears to be feasible, but also essential to model interprofessional care planning for common co-occurring conditions and chronic diseases. We recommend the creation of goal dynamics and decision concepts in SNOMED CT to further enable the necessary models. Systems with flexible terminology management infrastructure may enable intelligent decision support to identify conflicting and aligned concerns, goals, decisions, and interventions in shared care plans, ultimately decreasing documentation effort and cognitive burden for clinicians and
Lorraine Frisina Doetter
Full Text Available Given the saliency of socio-demographic pressures, the highly restrictive definition of “need for care” characterizing the German long-term care system at its foundations in 1994 has since been subject to various expansionary reforms. This has translated into greater interest in innovative care models that provide more choice and flexibility to beneficiaries. One such model is ‘shared housing arrangements’ (“ambulant betreute Wohngemeinschaften”, where a small group of people rent private rooms, while sharing a common space, domestic support, and nursing care. Using interview and secondary data, this study examines the potential for such arrangements to provide an equitable alternative to care that is accessible to a larger population of beneficiaries than presently seen in Germany.
Shared electronic health and social care records in some service systems are already showing some of the benefits of digital technology and digital data for integrating health and social care. These records are one example of the beginning "digitalisation" of services that gives a glimpse of the potential of digital technology and systems for building coordinated and individualized integrated care. Yet the promise has been greater than the benefits, and progress has been slow compared to other industries. This paper describes for non-technical readers how information technology was used to support integrated care schemes in six EU services, and suggests practical ways forward to use the new opportunities to build person-centered integrated care.
Paunova, Minna; Li-Ying, Jason; Egerod, Ingrid Eugenie
This study investigates the influence of nurse knowledge sharing behavior on nurse innovation, given different conditions of control of care quality within the intensive care unit (ICU). After conducting a number of interviews and a pilot study, we carried out a multi-source survey study of more...... control of care quality and innovate may be conflicting, unless handled properly....
Lund, Lars; Jønker, M; Graversen, P.H.
general practitioners (GPs) can handle follow-up. MATERIAL AND METHODS: A Steering Committee was established in collaboration with health-care professionals to devise a strategy for a shared care model. An action plan was designed that included 1) the development of a shared care model for follow......-up and treatment, 2) implementation of the shared care model in cooperation between the parties involved, 3) design of procedures for re-referral, and 4) evaluation of effect, change processes and contextual factors. RESULTS: A total of 2,585 patients with PC were included in the study: 1,172 had disseminated...... patient satisfaction. FUNDING: not relevant. TRIAL REGISTRATION: not relevant....
Hajli, M Nick; Shanmugam, Mohana; Hajli, Ali; Khani, Amir Hossein; Wang, Yichuan
The emergence of Web 2.0 technologies has already been influential in many industries, and Web 2.0 applications are now beginning to have an impact on health care. These new technologies offer a promising approach for shaping the future of modern health care, with the potential for opening up new opportunities for the health care industry as it struggles to deal with challenges including the need to cut costs, the increasing demand for health services and the increasing cost of medical technology. Social media such as social networking sites are attracting more individuals to online health communities, contributing to an increase in the productivity of modern health care and reducing transaction costs. This study therefore examines the potential effect of social technologies, particularly social media, on health care development by adopting a social support/transaction cost perspective. Viewed through the lens of Information Systems, social support and transaction cost theories indicate that social media, particularly online health communities, positively support health care development. The results show that individuals join online health communities to share and receive social support, and these social interactions provide both informational and emotional support.
Xin, Haichang; Harman, Jeffrey S; Yang, Zhou
This study examines whether high cost-sharing in physician care is associated with a differential impact on total care costs by health status. Total care includes physician care, emergency room (ER) visits and inpatient care. Since high cost-sharing policies can reduce needed care as well as unneeded care use, it raises the concern whether these policies are a good strategy for controlling costs among chronically ill patients. This study used the 2007 Medical Expenditure Panel Survey data with a cross-sectional study design. Difference in difference (DID), instrumental variable technique, two-part model, and bootstrap technique were employed to analyze cost data. Chronically ill individuals' probability of reducing any overall care costs was significantly less than healthier individuals (beta = 2.18, p = 0.04), while the integrated DID estimator from split results indicated that going from low cost-sharing to high cost-sharing significantly reduced costs by $12,853.23 more for sick people than for healthy people (95% CI: -$17,582.86, -$8,123.60). This greater cost reduction in total care among sick people likely resulted from greater cost reduction in physician care, and may have come at the expense of jeopardizing health outcomes by depriving patients of needed care. Thus, these policies would be inappropriate in the short run, and unlikely in the long run to control health plans costs among chronically ill individuals. A generous benefit design with low cost-sharing policies in physician care or primary care is recommended for both health plans and chronically ill individuals, to save costs and protect these enrollees' health status.
Salzmann-Erikson, Martin; Eriksson, Henrik
Becoming a father is a life changing event and this transition is associated with various emotions. Educational activities aimed at new parents are important in healthcare parental support (HCPS). HCPS has been critiqued for its predominant focus on mothers, while the needs of fathers seem to have been downplayed. As a result, fathers often turn to Internet-based forums for support. As virtual discussions and mutual support among fathers take place in cyberspace, it is important to monitor these forums to observe the ways in which the fathers discuss HCPS. The aim of this study is to explore the ways in which new fathers visiting an Internet-based forum for fathers communicated their experiences of HCPS. A netnographic method consisting of six steps was used to gather and analyse the data. The findings show that fathers shared with one another their experiences of the attitudes expressed by HCPS workers as well as their own attitudes towards HCPS. The attitudes of HCPS workers that were directed towards the fathers were perceived as highly personal and individual, while fathers described their attitudes towards the HCPS in general terms, towards HCPS as a system. Overall, the fathers described HCPS as a valuable confirmatory support that eased their worries concerning sudden infant death syndrome (SIDS), colic, weight gain, fever and teething. Although the fathers expressed gratitude towards HCPS, they also shared their negative experiences, such as feeling invisible, disregarded and insulted. In fact, the twofold attitudes that exist in the relationship between the fathers and HCPS can act as a barrier rather than being a confirmatory support. We recommend that HCPS adopts a broader approach using more targeted and strategic didactic methods for supporting fathers in the growth of their own personal awareness, as such an approach would offer a competitive and professional alternative to the support offered in informal experience-based Internet forums. © 2013
Hansen, Henrik Enggaard; Maroun, Emad Jacob; Kristensen, Andreas Toftegaard
Multicore processors usually communicate via shared memory, which is backed up by a shared level 2 cache and a cache coherence protocol. However, this solution is not a good fit for real-time systems, where we need to provide tight guarantees on execution and memory access times. In this paper, we...... propose a shared scratchpad memory as a time-predictable communication and synchronization structure, instead of the level 2 cache. The shared on-chip memory is accessed via a time division multiplexing arbiter, isolating the execution time of load and store instructions between processing cores....... Furthermore, the arbiter supports an extended time slot where an atomic load and store instruction can be executed to implement synchronization primitives. In the evaluation we show that a shared scratchpad memory is an efficient communication structure for a small number of processors; in our setup, 9 cores...
DiNucci, David C.; Balley, David H. (Technical Monitor)
can add overhead to some DSM systems, and does not require an SPMD programming model. unlike some message-passing interfaces, CDS allows the user to implement efficient demand-driven applications where processes must "fight" over data, and does not perform copying if processes share memory and do not attempt concurrent writes. CDS also supports heterogeneous computing, dynamic process creation, handlers, and a very simple thread-arbitration mechanism. Additional support for array subsections is currently being considered. The CDS1 API, which forms the kernel of CDS, is built primarily upon only 2 communication primitives, one process initiation primitive, and some data translation (and marshalling) routines, memory allocation routines, and priority control routines. The entire current collection of 28 routines provides enough functionality to implement most (or all) of MPI 1 and 2, which has a much larger interface consisting of hundreds of routines. still, the API is small enough to consider integrating into standard os interfaces for handling inter-process communication in a network-independent way. This approach would also help to solve many of the problems plaguing other higher-level standards such as MPI and PVM which must, in some cases, "play OS" to adequately address progress and process control issues. The CDS2 API, a higher level of interface roughly equivalent in functionality to MPI and to be built entirely upon CDS1, is still being designed. It is intended to add support for the equivalent of communicators, reduction and other collective operations, process topologies, additional support for process creation, and some automatic memory management. CDS2 will not exactly match MPI, because the copy-free semantics of communication from CDS1 will be supported. CDS2 application programs will be free to carefully also use CDS1. CDS1 has been implemented on networks of workstations running unmodified Unix-based operating systems, using UDP/IP and vendor
Full Text Available Shared electronic health and social care records in some service systems are already showing some of the benefits of digital technology and digital data for integrating health and social care. These records are one example of the beginning “digitalisation” of services that gives a glimpse of the potential of digital technology and systems for building coordinated and individualized integrated care. Yet the promise has been greater than the benefits, and progress has been slow compared to other industries. This paper describes for non-technical readers how information technology was used to support integrated care schemes in six EU services, and suggests practical ways forward to use the new opportunities to build person-centered integrated care.
Shared electronic health and social care records in some service systems are already showing some of the benefits of digital technology and digital data for integrating health and social care. These records are one example of the beginning “digitalisation” of services that gives a glimpse of the potential of digital technology and systems for building coordinated and individualized integrated care. Yet the promise has been greater than the benefits, and progress has been slow compared to other industries. This paper describes for non-technical readers how information technology was used to support integrated care schemes in six EU services, and suggests practical ways forward to use the new opportunities to build person-centered integrated care. PMID:29588629
The U.S. 2010 Patient Protection and Affordable Care Act (ACA) exempts members of health care sharing ministries (HCSMs) from the individual mandate to have minimum essential insurance coverage. Little is generally known about these religious organizations and even less critical attention has been brought to bear on them and their ACA exemption. Both deserve close scrutiny due to the exemption's less than clear legislative justification, their potential influence on the ACA's policy and ethical success, and their salience to current religious liberty debates surrounding the expansion of religious exemptions from ACA responsibilities for both individuals and corporations. Analyzing documents of the United States' three largest health care sharing ministries and related material, I examine these organizations and their ACA exemption with particular consideration of their ethical dimensions. Here a thick description of the nature and workings of health care sharing ministries precedes a similar account of the ACA exemption. From these empirical analyses, five ethical and policy concerns emerge: (1) the charity versus insurance status of these ministries; (2) the conflation of two ACA religious exemptions; (3) the tension between the values of religious liberty and of justice; (4) the potential undermining of ACA policy goals; and (5) the questionable compliance of health care sharing ministries with ACA exemption requirements. An accurate and informed understanding of HCSMs is required for policymakers and others to justify the ACA exemption of health care sharing ministry members. A sufficient justification would address at least the five ethical and policy concerns raised here.
McGuire, Nan; And Others
This handbook provides detailed information about job sharing for both administrators and potential sharers who are interested in implementing this new work arrangement. It incorporates results of a survey of job sharing in health care organizations as well as interviews and contacts with health care providers. A section on employees and job…
Hsieh, Hui-Min; Bazzoli, Gloria J.
This study examines the association between hospital uncompensated care (UC) and reductions in Medicaid Disproportionate Share Hospital (DSH) payments resulting from the 1997 Balanced Budget Act. Data on California hospitals from 1996 to 2003 were examined using two-stage least squares with a first-differencing model to control for potential feedback effects. Our findings suggest that not-for-profit hospitals did reduce UC provision in response to reductions in Medicaid DSH, but the response was inelastic in value. Policy makers need to continue to monitor how UC changes as sources of support for indigent care change with the Patient Protection and Affordable Care Act (PPACA). PMID:23230705
Full Text Available Till date, the medical decision-making process in Korea has followed the paternalist model, relying on the instructions of physicians. However, in recent years, shared decision making at the end-of-life between physicians and nurses is now emphasized in Korea. The purpose of this study was conducted to explore how health care professionals’ characteristics, attitude toward dignified dying, and moral sensitivity affect their shared medical decision making. The design was descriptive survey. This study was undertaken in two university hospitals in two metropolitan cities, South Korea. The participants were 344 nurses and 80 physicians who work at university hospitals selected by convenience sampling method. Data were collected from January 10 through March 20, 2014 using the Dignified Dying Scale, Moral Sensitivity Scale, and Shared Medical Decision-Making Scale. Shared medical decision making, attitude toward dignified dying, moral sensitivity, age, and working experience had a significant correlation with each other. The factors affecting shared medical decision making of Korean health care professionals were moral sensitivity and attitude toward dignified dying. These variables explained 22.4% of the shared medical decision making. Moral sensitivity and a positive attitude toward dignified dying should be promoted among health care professionals as a part of an educational program for shared medical decision making.
Blaschke, Sarah; O'Callaghan, Clare C; Schofield, Penelope
Given preliminary evidence for positive health outcomes related to contact with nature for cancer populations, research is warranted to ascertain possible strategies for incorporating nature-based care opportunities into oncology contexts as additional strategies for addressing multidimensional aspects of cancer patients' health and recovery needs. The objective of this study was to consolidate existing research related to nature-based supportive care opportunities and generate a conceptual framework for discerning relevant applications in the supportive care setting. Drawing on research investigating nature-based engagement in oncology contexts, a two-step analytic process was used to construct a conceptual framework for guiding nature-based supportive care design and future research. Concept analysis methodology generated new representations of understanding by extracting and synthesising salient concepts. Newly formulated concepts were transposed to findings from related research about patient-reported and healthcare expert-developed recommendations for nature-based supportive care in oncology. Five theoretical concepts (themes) were formulated describing patients' reasons for engaging with nature and the underlying needs these interactions address. These included: connecting with what is genuinely valued, distancing from the cancer experience, meaning-making and reframing the cancer experience, finding comfort and safety, and vital nurturance. Eight shared patient and expert recommendations were compiled, which address the identified needs through nature-based initiatives. Eleven additional patient-reported recommendations attend to beneficial and adverse experiential qualities of patients' nature-based engagement and complete the framework. The framework outlines salient findings about helpful nature-based supportive care opportunities for ready access by healthcare practitioners, designers, researchers and patients themselves. © Article author(s) (or their
Kasztelnik, Marek; Coto, Ernesto; Bubak, Marian; Malawski, Maciej; Nowakowski, Piotr; Arenas, Juan; Saglimbeni, Alfredo; Testi, Debora; Frangi, Alejandro F
To address the increasing need for collaborative endeavours within the Virtual Physiological Human (VPH) community, the VPH-Share collaborative cloud platform allows researchers to expose and share sequences of complex biomedical processing tasks in the form of computational workflows. The Taverna Workflow System is a very popular tool for orchestrating complex biomedical & bioinformatics processing tasks in the VPH community. This paper describes the VPH-Share components that support the building and execution of Taverna workflows, and explains how they interact with other VPH-Share components to improve the capabilities of the VPH-Share platform. Taverna workflow support is delivered by the Atmosphere cloud management platform and the VPH-Share Taverna plugin. These components are explained in detail, along with the two main procedures that were developed to enable this seamless integration: workflow composition and execution. 1) Seamless integration of VPH-Share with other components and systems. 2) Extended range of different tools for workflows. 3) Successful integration of scientific workflows from other VPH projects. 4) Execution speed improvement for medical applications. The presented workflow integration provides VPH-Share users with a wide range of different possibilities to compose and execute workflows, such as desktop or online composition, online batch execution, multithreading, remote execution, etc. The specific advantages of each supported tool are presented, as are the roles of Atmosphere and the VPH-Share plugin within the VPH-Share project. The combination of the VPH-Share plugin and Atmosphere engenders the VPH-Share infrastructure with far more flexible, powerful and usable capabilities for the VPH-Share community. As both components can continue to evolve and improve independently, we acknowledge that further improvements are still to be developed and will be described. Copyright © 2017 Elsevier B.V. All rights reserved.
Kelly Brian J
Full Text Available Abstract Background While integrated primary healthcare for the management of depression has been well researched, appropriate models of primary care for people with severe and persistent psychotic disorders are poorly understood. In 2010 the NSW (Australia Health Department commissioned a review of the evidence on "shared care" models of ambulatory mental health services. This focussed on critical factors in the implementation of these models in clinical practice, with a view to providing policy direction. The review excluded evidence about dementia, substance use and personality disorders. Methods A rapid review involving a search for systematic reviews on The Cochrane Database of Systematic Reviews and Database of Abstracts of Reviews of Effects (DARE. This was followed by a search for papers published since these systematic reviews on Medline and supplemented by limited iterative searching from reference lists. Results Shared care trials report improved mental and physical health outcomes in some clinical settings with improved social function, self management skills, service acceptability and reduced hospitalisation. Other benefits include improved access to specialist care, better engagement with and acceptability of mental health services. Limited economic evaluation shows significant set up costs, reduced patient costs and service savings often realised by other providers. Nevertheless these findings are not evident across all clinical groups. Gains require substantial cross-organisational commitment, carefully designed and consistently delivered interventions, with attention to staff selection, training and supervision. Effective models incorporated linkages across various service levels, clinical monitoring within agreed treatment protocols, improved continuity and comprehensiveness of services. Conclusions "Shared Care" models of mental health service delivery require attention to multiple levels (from organisational to individual
Li-Ying, Jason; Paunova, Minna; Egerod, Ingrid
Aims This study investigates the influence of intensive care unit nurses’ knowledge sharing behaviour on nurse innovation, given different conditions of care quality control. Background Health-care organisations face an increasing pressure to innovate while controlling care quality. We have littl...
Small, R; Lumley, J; Yelland, J; Rice, P L
To compare the views of women from non-English-speaking backgrounds who received antenatal care at a public hospital clinic with those whose care was shared between a public hospital clinic and a general practitioner. Structured interviews in the language of the woman's choice. Women were recruited from the postnatal wards of three maternity teaching hospitals in Melbourne between July 1994 and November 1995, and interviewed six to nine months later. Women born in Vietnam, Turkey and the Philippines who gave birth to a live healthy baby (over 1500 g) were eligible. Of 435 women recruited, 318 (Vietnamese [32.7%], Filipino [33.6%] and Turkish [33.6%]) completed the study. Women's ratings of their antenatal care overall and views on specific aspects of their antenatal care. Women in shared care (n = 151) were not more likely than women in public clinic care (n = 143) to rate their care as "very good" (odds ratio [OR], 1.38; 95% confidence interval [95% CI], 0.72-2.63). Satisfaction with particular aspects of care (waiting times, opportunity to ask questions, whether caregivers were rushed, whether concerns were taken seriously) did not differ significantly between those in shared care and those in public clinic care. Women in shared care were not happier with their medical care than women in public clinic care (OR, 0.83; 95% CI, 0.35-1.96), but were more likely to see a caregiver who spoke their language (OR, 17.69; 95% CI, 6.15-69.06), although two-thirds still saw a GP who spoke only English. Shared antenatal care is not more satisfying than public clinic care for women from non-English-speaking backgrounds. Further evaluation of shared care is clearly needed.
Tailoring and field-testing the use of a knowledge translation peer support shared decision making strategy with First Nations, Inuit and Métis people making decisions about their cancer care: a study protocol.
Jull, Janet; Mazereeuw, Maegan; Sheppard, Amanada; Kewayosh, Alethea; Steiner, Richard; Graham, Ian D
Tailoring and testing a peer support decision making strategy with First Nations, Inuit and Métis people making decisions about their cancer care: A study protocol.First Nations, Inuit and Métis (FNIM) people face higher risks for cancer compared to non-FNIM populations. They also face cultural barriers to health service use. Within non-FNIM populations an approach to health decision making, called shared decision making (SDM), has been found to improve the participation of people in their healthcare. Peer support with SDM further improves these benefits. The purpose of this study is to tailor and test a peer support SDM strategy with community support workers to increase FNIM people's participation in their cancer care.This project has two phases that will be designed and conducted with a Steering Committee that includes members of the FNIM and cancer care communities. First, a peer support SDM strategy will be tailored to meet the needs of cancer system users who are receiving care in urban settings, and training in the SDM strategy developed for community support workers. Three communities will be supported for participation in the study and community support workers who are peers from each community will be trained to use the SDM strategy.Next, each community support worker will work with a community member who has a diagnosis of cancer or who has supported a family member with cancer. Each community support worker and community member pair will use the SDM strategy. The participation and experience of the community support worker and community member will be evaluated.The research will be used to develop strategies to support people who are making decisions about their health. Tailoring and field-testing the use of a knowledge translation peer support shared decision making strategy with First Nations, Inuit and Métis people making decisions about their cancer care: A study protocol Background First Nations, Inuit and Métis ("FNIM") people face increased
Cash, Philip; Ahmed-Kristensen, Saeema
globally distributed NPD activities. Poor shared understanding can ultimately result in delays and rework. One major antecedent of shared understanding development is question asking. This work uses a quasiexperimental study to test the impact of questioning support on different types of distributed teams...
Jesus, Tiago Silva; Hoenig, Helen
There is substantial interest in mechanisms for measuring, reporting, and improving the quality of health care, including postacute care (PAC) and rehabilitation. Unfortunately, current activities generally are either too narrow or too poorly specified to reflect PAC rehabilitation quality of care. In part, this is caused by a lack of a shared conceptual understanding of what construes quality of care in PAC rehabilitation. This article presents the PAC-rehab quality framework: an evidence-based conceptual framework articulating elements specifically pertaining to PAC rehabilitation quality of care. The widely recognized Donabedian structure, process, and outcomes (SPO) model furnished the underlying structure for the PAC-rehab quality framework, and the International Classification of Functioning, Disability and Health (ICF) framed the functional outcomes. A comprehensive literature review provided the evidence base to specify elements within the SPO model and ICF-derived framework. A set of macrolevel-outcomes (functional performance, quality of life of patient and caregivers, consumers' experience, place of discharge, health care utilization) were defined for PAC rehabilitation and then related to their (1) immediate and intermediate outcomes, (2) underpinning care processes, (3) supportive team functioning and improvement processes, and (4) underlying care structures. The role of environmental factors and centrality of patients in the framework are explicated as well. Finally, we discuss why outcomes may best measure and reflect the quality of PAC rehabilitation. The PAC-rehab quality framework provides a conceptually sound, evidence-based framework appropriate for quality of care activities across the PAC rehabilitation continuum. Copyright © 2015 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.
Full Text Available Introduction: Following hip fracture surgery, patients often experience multiple transitions through different care settings, with resultant challenges to the quality and continuity of patient care. Family caregivers can play a key role in these transitions, but are often poorly engaged in the process. We aimed to: (1 examine the characteristics of the family caregivers’ experience of communication and information sharing and (2 identify facilitators and barriers of effective information sharing among patients, family caregivers and health care providers.Methods: Using an ethnographic approach, we followed 11 post-surgical hip fracture patients through subsequent care transitions in rural Ontario; in-depth interviews were conducted with patients, family caregivers (n = 8 and health care providers (n = 24.Results: Priority areas for improved information sharing relate to trust and respect, involvement, and information needs and expectations; facilitators and barriers included prior health care experience, trusting relationships and the rural setting.Conclusion: As with knowledge translation, effective strategies to improve information sharing and care continuity for older patients with chronic illness may be those that involve active facilitation of an on-going partnership that respects the knowledge of all those involved.
Full Text Available Introduction: Following hip fracture surgery, patients often experience multiple transitions through different care settings, with resultant challenges to the quality and continuity of patient care. Family caregivers can play a key role in these transitions, but are often poorly engaged in the process. We aimed to: (1 examine the characteristics of the family caregivers’ experience of communication and information sharing and (2 identify facilitators and barriers of effective information sharing among patients, family caregivers and health care providers. Methods: Using an ethnographic approach, we followed 11 post-surgical hip fracture patients through subsequent care transitions in rural Ontario; in-depth interviews were conducted with patients, family caregivers (n = 8 and health care providers (n = 24. Results: Priority areas for improved information sharing relate to trust and respect, involvement, and information needs and expectations; facilitators and barriers included prior health care experience, trusting relationships and the rural setting. Conclusion: As with knowledge translation, effective strategies to improve information sharing and care continuity for older patients with chronic illness may be those that involve active facilitation of an on-going partnership that respects the knowledge of all those involved.
Sassen, Barbara; Kok, Gerjo; Schepers, Jan; Vanhees, Luc
Research to assess the effect of interventions to improve the processes of shared decision making and self-management directed at health care professionals is limited. Using the protocol of Intervention Mapping, a Web-based intervention directed at health care professionals was developed to complement and optimize health services in patient-centered care. The objective of the Web-based intervention was to increase health care professionals' intention and encouraging behavior toward patient self-management, following cardiovascular risk management guidelines. A randomized controlled trial was used to assess the effect of a theory-based intervention, using a pre-test and post-test design. The intervention website consisted of a module to help improve professionals' behavior, a module to increase patients' intention and risk-reduction behavior toward cardiovascular risk, and a parallel module with a support system for the health care professionals. Health care professionals (n=69) were recruited online and randomly allocated to the intervention group (n=26) or (waiting list) control group (n=43), and invited their patients to participate. The outcome was improved professional behavior toward health education, and was self-assessed through questionnaires based on the Theory of Planned Behavior. Social-cognitive determinants, intention and behavior were measured pre-intervention and at 1-year follow-up. The module to improve professionals' behavior was used by 45% (19/42) of the health care professionals in the intervention group. The module to support the health professional in encouraging behavior toward patients was used by 48% (20/42). The module to improve patients' risk-reduction behavior was provided to 44% (24/54) of patients. In 1 of every 5 patients, the guideline for cardiovascular risk management was used. The Web-based intervention was poorly used. In the intervention group, no differences in social-cognitive determinants, intention and behavior were found
Full Text Available Abstract Background Population ageing, the emergence of chronic illness, and the shift away from institutional care challenge conventional approaches to assessment systems which traditionally are problem and setting specific. Methods From 2002, the interRAI research collaborative undertook development of a suite of assessment tools to support assessment and care planning of persons with chronic illness, frailty, disability, or mental health problems across care settings. The suite constitutes an early example of a "third generation" assessment system. Results The rationale and development strategy for the suite is described, together with a description of potential applications. To date, ten instruments comprise the suite, each comprising "core" items shared among the majority of instruments and "optional" items that are specific to particular care settings or situations. Conclusion This comprehensive suite offers the opportunity for integrated multi-domain assessment, enabling electronic clinical records, data transfer, ease of interpretation and streamlined training.
Gray, Leonard C; Berg, Katherine; Fries, Brant E; Henrard, Jean-Claude; Hirdes, John P; Steel, Knight; Morris, John N
Background Population ageing, the emergence of chronic illness, and the shift away from institutional care challenge conventional approaches to assessment systems which traditionally are problem and setting specific. Methods From 2002, the interRAI research collaborative undertook development of a suite of assessment tools to support assessment and care planning of persons with chronic illness, frailty, disability, or mental health problems across care settings. The suite constitutes an early example of a "third generation" assessment system. Results The rationale and development strategy for the suite is described, together with a description of potential applications. To date, ten instruments comprise the suite, each comprising "core" items shared among the majority of instruments and "optional" items that are specific to particular care settings or situations. Conclusion This comprehensive suite offers the opportunity for integrated multi-domain assessment, enabling electronic clinical records, data transfer, ease of interpretation and streamlined training. PMID:19402891
Siminoff, L A; Sandberg, D E
Specific complaints and grievances from adult patients with disorders of sex development (DSD), and their advocates center around the lack of information or misinformation they were given about their condition and feeling stigmatized and shamed by the secrecy surrounding their condition and its management. Many also attribute poor sexual function to damaging genital surgery and/or repeated, insensitive genital examinations. These reports suggest the need to reconsider the decision-making process for the treatment of children born with DSD. This paper proposes that shared decision making, an important concept in adult health care, be operationalized for the major decisions commonly encountered in DSD care and facilitated through the utilization of decision aids and support tools. This approach may help patients and their families make informed decisions that are better aligned with their personal values and goals. It may also lead to greater confidence in decision making with greater satisfaction and less regret. A brief review of the past and current approach to DSD decision making is provided, along with a review of shared decision making and decision aids and support tools. A case study explores the need and potential utility of this suggested new approach. © Georg Thieme Verlag KG Stuttgart · New York.
Shared decision making (SDM) in mental health care involves clinicians and patients working together to make decisions. The key elements of SDM have been identified, decision support tools have been developed, and SDM has been recommended in mental health at policy level. Yet implementation remains limited. Two justifications are typically advanced in support of SDM. The clinical justification is that SDM leads to improved outcome, yet the available empirical evidence base is inconclusive. The ethical justification is that SDM is a right, but clinicians need to balance the biomedical ethical principles of autonomy and justice with beneficence and non-maleficence. It is argued that SDM is "polyvalent", a sociological concept which describes an idea commanding superficial but not deep agreement between disparate stakeholders. Implementing SDM in routine mental health services is as much a cultural as a technical problem. Three challenges are identified: creating widespread access to high-quality decision support tools; integrating SDM with other recovery-supporting interventions; and responding to cultural changes as patients develop the normal expectations of citizenship. Two approaches which may inform responses in the mental health system to these cultural changes - social marketing and the hospitality industry - are identified. © 2017 World Psychiatric Association.
Keller, Richard M.; Lucas, Paul J.; Compton, Michael M.; Stewart, Helen J.; Baya, Vinod; DelAlto, Martha
The deployment of information-sharing systems in large organizations can significantly impact existing policies and procedures with regard to authority and control over information. Unless information-sharing systems explicitly support organizational structures and needs, these systems will be rejected summarily. The Postdoc system is a deployed Web-based information-sharing system created specifically to address organizational needs. Postdoc contains various organizational support features including a shared, globally navigable document space, as well as specialized access control, distributed administration, and mailing list features built around the key notion of hierarchical group structures. We review successes and difficulties in supporting organizational needs with Postdoc
Holtzer-Goor, Kim M.; van Vliet, Ellen J.; van Sprundel, Esther; Plochg, Thomas; Koopmanschap, Marc A.; Klazinga, Niek S.; Lemij, Hans G.
Comparing the quality of care provided by a hospital-based shared care glaucoma follow-up unit with care as usual. This randomized controlled trial included stable glaucoma patients and patients at risk for developing glaucoma. Patients in the Usual Care group (n=410) were seen by glaucoma
Torres, Audrey; Kunishige, Nalani; Morimoto, Denise; Hanzawa, Tracie; Ebesu, Mike; Fernandez, John; Nohara, Lynne; SanAgustin, Eliseo; Borg, Stephanie
Rehabilitation care is specialized and individualized requiring effective and efficient communication to achieve optimal patient outcomes. To examine how effective implementation of shared governance could improve care delivery, promote patient-centered care, and improve patient outcomes. The shared governance approach included all members of the rehabilitation team (i.e., physical therapist, occupational therapist, speech therapist, registered nurse and nurse aide) and was implemented over 6 months. The major end products of this shared governance effort were improved staff communication, problem solving, patient outcomes, and staff satisfaction on our stroke and brain injury unit. When effectively implemented and sustained, shared governance between all rehabilitation team stakeholders can increase the effectiveness of communication along with more positive patient and staff outcomes. © 2014 Association of Rehabilitation Nurses.
Cooper, J; Spencer, D
This article examines the authors' experience of job sharing a post in palliative care education. It discusses the concept of job sharing and examines factors such as power sharing, compatibility and other people's perception of the job sharing role. Effective communication is identified as a key issue. Benefits such as reduced professional isolation, increased job satisfaction and the opportunity to offer the knowledge and skills of two people are highlighted. The authors identify the factors which they consider to be crucial to the success of job sharing.
Pennafort, Viviane Peixoto Dos Santos; Queiroz, Maria Veraci Oliveira; Nascimento, Lucila Castanheira; Guedes, Maria Vilani Cavalcante
to understand the influence of network and social support in the care of a child with type 1 diabetes. qualitative study, with assumptions of ethnonursing, conducted in a reference service specialized in the treatment of diabetes, in 2014, in the city of Fortaleza, state of Ceará, Brazil. Twenty-six members of the family and their respective school children participated in the study. The process of collection and analysis followed the observation-participation-reflection model. the analytical categories showed that the social network in the care of children with diabetes helped sharing of information and experiences, moments of relaxation and aid in the acquisition of supplies for treatment, with positive repercussions in the family context, generating well-being and confidence in the care of children with diabetes. the cultural care provided by nurses strengthens the network and social support because it encourages autonomy in the promotion of the quality of life of children with type 1 diabetes and their families.
Drummond, C; Simpson, A
WHAT IS KNOWN ON THE SUBJECT?: A written plan is designed to improve communication and co-ordinate care between mental health inpatient wards and community settings. Reports of care plan quality issues and staff and service user dissatisfaction with healthcare bureaucracy have focused on working age mental health or general hospital settings. Little is known about mental health staff perspectives on the value of written care plans in supporting dementia care. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: Competing demands on staff time and resources to meet administrative standards for care plans caused a tension with their own professional priorities for supporting care. Mental health staff face difficulties using electronic records alongside other systems of information sharing. Further exploration is needed of the gap between frontline staff values and those of the local organization and managers when supporting good dementia care. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Frontline staff should be involved in designing new information systems including care plans. Care plan documentation needs to be refocused to ensure it is effective in enabling staff to communicate amongst themselves and with others to support people with dementia. Practice-based mentors could be deployed to strengthen good practice in effective information sharing. Background Reports of increased healthcare bureaucracy and concerns over care plan quality have emerged from research and surveys into staff and service user experiences. Little is known of mental health staff perspectives on the value of written care plans in supporting dementia care. Aim To investigate the experiences and views of staff in relation to care planning in dementia services in one National Health Service (NHS) provider Trust in England. Method Grounded Theory methodology was used. A purposive sample of 11 multidisciplinary staff were interviewed across three sites in one NHS Trust. Interviews were transcribed, coded
Llewellyn-Jones, R H; Baikie, K A; Smithers, H; Cohen, J; Snowdon, J; Tennant, C C
To evaluate the effectiveness of a population based, multifaceted shared care intervention for late life depression in residential care. Randomised controlled trial, with control and intervention groups studied one after the other and blind follow up after 9.5 months. Population of residential facility in Sydney living in self care units and hostels. 220 depressed residents aged >/=65 without severe cognitive impairment. The shared care intervention included: (a) multidisciplinary consultation and collaboration, (b) training of general practitioners and carers in detection and management of depression, and (c) depression related health education and activity programmes for residents. The control group received routine care. Geriatric depression scale. Intention to treat analysis was used. There was significantly more movement to "less depressed" levels of depression at follow up in the intervention than control group (Mantel-Haenszel stratification test, P=0.0125). Multiple linear regression analysis found a significant intervention effect after controlling for possible confounders, with the intervention group showing an average improvement of 1.87 points on the geriatric depression scale compared with the control group (95% confidence interval 0.76 to 2.97, P=0.0011). The outcome of depression among elderly people in residential care can be improved by multidisciplinary collaboration, by enhancing the clinical skills of general practitioners and care staff, and by providing depression related health education and activity programmes for residents.
Chai, Huamin; Guerriere, Denise N; Zagorski, Brandon; Coyte, Peter C
With increasing emphasis on the provision of home-based palliative care in Canada, economic evaluation is warranted, given its tremendous demands on family caregivers. Despite this, very little is known about the economic outcomes associated with home-based unpaid care-giving at the end of life. The aims of this study were to (i) assess the magnitude and share of unpaid care costs in total healthcare costs for home-based palliative care patients, from a societal perspective and (ii) examine the sociodemographic and clinical factors that account for variations in this share. One hundred and sixty-nine caregivers of patients with a malignant neoplasm were interviewed from time of referral to a home-based palliative care programme provided by the Temmy Latner Centre for Palliative Care at Mount Sinai Hospital, Toronto, Canada, until death. Information regarding palliative care resource utilisation and costs, time devoted to care-giving and sociodemographic and clinical characteristics was collected between July 2005 and September 2007. Over the last 12 months of life, the average monthly cost was $14 924 (2011 CDN$) per patient. Unpaid care-giving costs were the largest component - $11 334, accounting for 77% of total palliative care expenses, followed by public costs ($3211; 21%) and out-of-pocket expenditures ($379; 2%). In all cost categories, monthly costs increased exponentially with proximity to death. Seemingly unrelated regression estimation suggested that the share of unpaid care costs of total costs was driven by patients' and caregivers' sociodemographic characteristics. Results suggest that overwhelming the proportion of palliative care costs is unpaid care-giving. This share of costs requires urgent attention to identify interventions aimed at alleviating the heavy financial burden and to ultimately ensure the viability of home-based palliative care in future. © 2013 John Wiley & Sons Ltd.
In many clinical scenarios there exists more than one clinically appropriate intervention strategy. When these involve subjective trade-offs between potential benefits and harms, patients\\' preferences should inform decision-making. Shared decision-making is a collaborative process, where clinician and patient reconcile the best available evidence with respect for patients\\' individualized care preferences. In practice, clinicians may be poorly equipped to participate in this process. Shared decision-making is applicable to many conditions including stable coronary artery disease, end-of-life care, and numerous small decisions in chronic disease management. There is evidence of more clinically appropriate care patterns, improved patient understanding and sense of empowerment. Many trials reported a 20% reduction in major surgery in favour of conservative treatment, although demand tends to increase for some interventions. The generalizability of international evidence to Ireland is unclear. Considering the potential benefits, there is a case for implementing and evaluating shared decision-making pilot projects in Ireland.
Battersby, Malcolm; Von Korff, Michael; Schaefer, Judith; Davis, Connie; Ludman, Evette; Greene, Sarah M; Parkerton, Melissa; Wagner, Edward H
Recommendations to improve self-management support and health outcomes for people with chronic conditions in primary care settings are provided on the basis of expert opinion supported by evidence for practices and processes. Practices and processes that could improve self-management support in primary care were identified through a nominal group process. In a targeted search strategy, reviews and meta-analyses were then identifed using terms from a wide range of chronic conditions and behavioral risk factors in combination with Self-Care, Self-Management, and Primary Care. On the basis of these reviews, evidence-based principles for self-management support were developed. The evidence is organized within the framework of the Chronic Care Model. Evidence-based principles in 12 areas were associated with improved patient self-management and/or health outcomes: (1) brief targeted assessment, (2) evidence-based information to guide shared decision-making, (3) use of a nonjudgmental approach, (4) collaborative priority and goal setting, (5) collaborative problem solving, (6) self-management support by diverse providers, (7) self-management interventions delivered by diverse formats, (8) patient self-efficacy, (9) active followup, (10) guideline-based case management for selected patients, (11) linkages to evidence-based community programs, and (12) multifaceted interventions. A framework is provided for implementing these principles in three phases of the primary care visit: enhanced previsit assessment, a focused clinical encounter, and expanded postvisit options. There is a growing evidence base for how self-management support for chronic conditions can be integrated into routine health care.
Laleci Erturkmen, Gokce Banu; Yuksel, Mustafa; Sarigul, Bunyamin; Lilja, Mikael; Chen, Rong; Arvanitis, Theodoros N
Older age is associated with an increased accumulation of multiple chronic conditions. The clinical management of patients suffering from multiple chronic conditions is very complex, disconnected and time-consuming with the traditional care settings. Integrated care is a means to address the growing demand for improved patient experience and health outcomes of multimorbid and long-term care patients. Care planning is a prevalent approach of integrated care, where the aim is to deliver more personalized and targeted care creating shared care plans by clearly articulating the role of each provider and patient in the care process. In this paper, we present a method and corresponding implementation of a semi-automatic care plan management tool, integrated with clinical decision support services which can seamlessly access and assess the electronic health records (EHRs) of the patient in comparison with evidence based clinical guidelines to suggest personalized recommendations for goals and interventions to be added to the individualized care plans.
Fishman, Jessica M; Greenberg, Patricia; Bagga, Margy Barbieri; Casarett, David; Propert, Kathleen
When attempting to share information about comfort-oriented care, many use "palliative," "supportive," and "hospice" care terminology interchangeably, but we lack evidence about the effects of using these different terms. This study was designed to test whether the use of "palliative," "supportive," or "hospice" terminology can improve the dissemination of information among breast cancer patients-a large and growing oncology population. Design, Setting, and Measurement: This experimental study was conducted at a major U.S. hospital serving a diverse population. Patients visiting a cancer clinic encountered opportunities to learn more about cancer care. They were offered health materials that were described as reporting on "palliative," "supportive," or "hospice" care and the primary outcome was whether a patient decided to select or reject each. As a secondary outcome, the study measured the patient's level of interest in receiving each. Compared with alternatives, materials labeled as "supportive" care were most likely to be selected and considered valuable (p value information labeled as being about "supportive" care was significantly more likely to be selected. If these effects are supported by additional research, there may be low-cost, highly feasible changes in language choice that increase the dissemination of relevant health information.
Hartzler, Andrea; Skeels, Meredith M; Mukai, Marlee; Powell, Christopher; Klasnja, Predrag; Pratt, Wanda
When patients share personal health information with family and friends, their social networks become better equipped to help them through serious health situations. Thus, patients need tools that enable granular control over what personal health information is shared and with whom within social networks. Yet, we know little about how well such tools support patients' complex sharing needs. We report on a lab study in which we examined the transparency of sharing interfaces that display an overview and details of information sharing with network connections in an internet-based personal health information management tool called HealthWeaver. Although participants found the interfaces easy to use and were highly confident in their interpretation of the sharing controls, several participants made errors in determining what information was shared with whom. Our findings point to the critical importance of future work that examines design of usable interfaces that offer transparent granularity in support of patients' complex information sharing practices.
Rosendal, H.; Beekum, W.T. van; Nijhof, P.; Witte, L.P. de; Schrijvers, A.J.P.
Objectives: To assess whether shared care for patients undergoing total hip replacement delivers better outcomes compared to care as usual. Design: Prospective, observational cohort study. Setting: Two regions in the Netherlands where different organisational health care models have been
Kon, Alexander A; Davidson, Judy E; Morrison, Wynne; Danis, Marion; White, Douglas B
Shared decision making is endorsed by critical care organizations; however, there remains confusion about what shared decision making is, when it should be used, and approaches to promote partnerships in treatment decisions. The purpose of this statement is to define shared decision making, recommend when shared decision making should be used, identify the range of ethically acceptable decision-making models, and present important communication skills. The American College of Critical Care Medicine and American Thoracic Society Ethics Committees reviewed empirical research and normative analyses published in peer-reviewed journals to generate recommendations. Recommendations approved by consensus of the full Ethics Committees of American College of Critical Care Medicine and American Thoracic Society were included in the statement. Six recommendations were endorsed: 1) DEFINITION: Shared decision making is a collaborative process that allows patients, or their surrogates, and clinicians to make healthcare decisions together, taking into account the best scientific evidence available, as well as the patient's values, goals, and preferences. 2) Clinicians should engage in a shared decision making process to define overall goals of care (including decisions regarding limiting or withdrawing life-prolonging interventions) and when making major treatment decisions that may be affected by personal values, goals, and preferences. 3) Clinicians should use as their "default" approach a shared decision making process that includes three main elements: information exchange, deliberation, and making a treatment decision. 4) A wide range of decision-making approaches are ethically supportable, including patient- or surrogate-directed and clinician-directed models. Clinicians should tailor the decision-making process based on the preferences of the patient or surrogate. 5) Clinicians should be trained in communication skills. 6) Research is needed to evaluate decision
Vadaparampil, S. T.; Malo, T.; Cruz, C. D. L.; Christie, J.; Vadaparampil, S. T.
BRCA genetic test results provide important information to manage cancer risk for patients and their families. Little is known on the communication of genetic test results by mutation status with family members and physicians in the oncology care setting. As part of a longitudinal study evaluating the impact of genetic counseling and testing among recently diagnosed breast cancer patients, we collected patients' self-reported patterns of disclosure. Descriptive statistics characterized the sample and determined the prevalence of disclosure of BRCA test results to family members and physicians. Of 100 patients who completed the baseline and the 6-month followup survey, 77 reported pursuing testing. The majority shared test results with female first-degree relatives; fewer did with males. Participants were more likely to share results with oncologists compared to surgeons, primary care physicians, or other specialty physicians. These findings suggest that while breast cancer patients may communicate results to at-risk female family members and their medical oncologist, they may need education and support to facilitate communication to other first-degree relatives and providers
Full Text Available The eSource Data Interchange Group, part of the Clinical Data Interchange Standards Consortium, proposed five scenarios to guide stakeholders in the development of solutions for the capture of eSource data. The fifth scenario was subdivided into four tiers to adapt the functionality of electronic health records to support clinical research. In order to develop a system belonging to the “Interoperable” Tier, the authors decided to adopt the service-oriented architecture paradigm to support technical interoperability, Health Level Seven Version 3 messages combined with LOINC (Logical Observation Identifiers Names and Codes vocabulary to ensure semantic interoperability, and Healthcare Services Specification Project standards to provide process interoperability. The developed architecture enhances the integration between patient-care practice and medical research, allowing clinical data sharing between two hospital information systems and four clinical data management systems/clinical registries. The core is formed by a set of standardized cloud services connected through standardized interfaces, involving client applications. The system was approved by a medical staff, since it reduces the workload for the management of clinical trials. Although this architecture can realize the “Interoperable” Tier, the current solution actually covers the “Connected” Tier, due to local hospital policy restrictions.
impact of cost sharing on health-care utilization as viewed from both the providers and beneficiary ... Policy reform for user fees in public health care in poor countries was derived ..... 10,000 (equivalent to US$ 6.25) annually. In return, one gets.
Full Text Available Introduction: Integrated care solutions need supportive financial incentives. In this paper we describe the financial architecture and operative details of the integrated pilot Gesundes Kinzigtal.Description of integrated care case: Located in Southwest Germany, Gesundes Kinzigtal is one of the few population-based integrated care approaches in Germany, organising care across all health service sectors and indications. The system serving around half of the population of the region is run by a regional health management company (Gesundes Kinzigtal GmbH in cooperation with the physicians' network in the region (MQNK, a German health care management company with a background in medical sociology and health economics (OptiMedis AG and with two statutory health insurers (among them is the biggest health insurer in Southwest Germany: AOK Baden-Württemberg.Discussion and (preliminary conclusion: The shared savings contract between Gesundes Kinzigtal GmbH and the two health insurers, providing financial incentives for managers and health care providers to realize a substantial efficiency gain, could be an appropriate contractual base of Gesundes Kinzigtal's population health gain approach. This approach is based on the assumption that a more effective trans-sector organisation of Germany's health care system and increased investments in well-designed preventive programmes will lead to a reduction in morbidity, and in particular to a reduced incidence and prevalence of chronic diseases. This, in turn, is to lead to a comparative reduction in health care cost. Although the comparative cost in the Kinzigtal region has been reduced from the onset of Gesundes Kinzigtal Integrated Care, only future research will have to demonstrate whether - and to what extent - cost reduction may be attributed to a real population health gain.
Full Text Available Introduction: Integrated care solutions need supportive financial incentives. In this paper we describe the financial architecture and operative details of the integrated pilot 'Gesundes Kinzigtal'. Description of integrated care case: Located in Southwest Germany, 'Gesundes Kinzigtal' is one of the few population-based integrated care approaches in Germany, organising care across all health service sectors and indications. The system serving around half of the population of the region is run by a regional health management company (Gesundes Kinzigtal GmbH in cooperation with the physicians' network in the region (MQNK, a German health care management company with a background in medical sociology and health economics (OptiMedis AG and with two statutory health insurers (among them is the biggest health insurer in Southwest Germany: AOK Baden-Württemberg. Discussion and (preliminary conclusion: The shared savings contract between Gesundes Kinzigtal GmbH and the two health insurers, providing financial incentives for managers and health care providers to realize a substantial efficiency gain, could be an appropriate contractual base of Gesundes Kinzigtal's population health gain approach. This approach is based on the assumption that a more effective trans-sector organisation of Germany's health care system and increased investments in well-designed preventive programmes will lead to a reduction in morbidity, and in particular to a reduced incidence and prevalence of chronic diseases. This, in turn, is to lead to a comparative reduction in health care cost. Although the comparative cost in the Kinzigtal region has been reduced from the onset of Gesundes Kinzigtal Integrated Care, only future research will have to demonstrate whether - and to what extent - cost reduction may be attributed to a real population health gain.
Sandman, Lars; Munthe, Christian
In patient-centred care, shared decision-making is advocated as the preferred form of medical decision-making. Shared decision-making is supported with reference to patient autonomy without abandoning the patient or giving up the possibility of influencing how the patient is benefited. It is, however, not transparent how shared decision-making is related to autonomy and, in effect, what support autonomy can give shared decision-making. In the article, different forms of shared decision-making are analysed in relation to five different aspects of autonomy: (1) self-realisation; (2) preference satisfaction; (3) self-direction; (4) binary autonomy of the person; (5) gradual autonomy of the person. It is argued that both individually and jointly these aspects will support the models called shared rational deliberative patient choice and joint decision as the preferred versions from an autonomy perspective. Acknowledging that both of these models may fail, the professionally driven best interest compromise model is held out as a satisfactory second-best choice.
Weitzman Elissa R
Full Text Available Abstract Background Data stored in personally controlled health records (PCHRs may hold value for clinicians and public health entities, if patients and their families will share them. We sought to characterize consumer willingness and unwillingness (reticence to share PCHR data across health topics, and with different stakeholders, to advance understanding of this issue. Methods Cross-sectional 2009 Web survey of repeat PCHR users who were patients over 18 years old or parents of patients, to assess willingness to share their PCHR data with an-out-of-hospital provider to support care, and the state/local public health authority to support monitoring; the odds of reticence to share PCHR information about ten exemplary health topics were estimated using a repeated measures approach. Results Of 261 respondents (56% response rate, more reported they would share all information with the state/local public health authority (63.3% than with an out-of-hospital provider (54.1% (OR 1.5, 95% CI 1.1, 1.9; p = .005; few would not share any information with these parties (respectively, 7.9% and 5.2%. For public health sharing, reticence was higher for most topics compared to contagious illness (ORs 4.9 to 1.4, all p-values Conclusions Pediatric patients and their families are often willing to share electronic health information to support health improvement, but remain cautious. Robust trust models for PCHR sharing are needed.
Wright, Adam; Bates, David W; Middleton, Blackford; Hongsermeier, Tonya; Kashyap, Vipul; Thomas, Sean M; Sittig, Dean F
Clinical decision support is a powerful tool for improving healthcare quality and patient safety. However, developing a comprehensive package of decision support interventions is costly and difficult. If used well, Web 2.0 methods may make it easier and less costly to develop decision support. Web 2.0 is characterized by online communities, open sharing, interactivity and collaboration. Although most previous attempts at sharing clinical decision support content have worked outside of the Web 2.0 framework, several initiatives are beginning to use Web 2.0 to share and collaborate on decision support content. We present case studies of three efforts: the Clinfowiki, a world-accessible wiki for developing decision support content; Partners Healthcare eRooms, web-based tools for developing decision support within a single organization; and Epic Systems Corporation's Community Library, a repository for sharing decision support content for customers of a single clinical system vendor. We evaluate the potential of Web 2.0 technologies to enable collaborative development and sharing of clinical decision support systems through the lens of three case studies; analyzing technical, legal and organizational issues for developers, consumers and organizers of clinical decision support content in Web 2.0. We believe the case for Web 2.0 as a tool for collaborating on clinical decision support content appears strong, particularly for collaborative content development within an organization.
Hanzlíček, Petr; Zvárová, Jana; Zvára, K.; Bureš, V.; Špidlen, Josef
Roč. 11, - (2005), s. 1-6 ISSN 1727-1983. [EMBEC'05. European Medical and Biomedical Conference /3./. Prague, 20.11.2005-25.11.2005] R&D Projects: GA AV ČR 1ET200300413 Institutional research plan: CEZ:AV0Z10300504 Keywords : electronic health record * shared health care * information technology Subject RIV: BD - Theory of Information
Kawamoto, Kensaku; Hongsermeier, Tonya; Wright, Adam; Lewis, Janet; Bell, Douglas S; Middleton, Blackford
To identify key principles for establishing a national clinical decision support (CDS) knowledge sharing framework. As part of an initiative by the US Office of the National Coordinator for Health IT (ONC) to establish a framework for national CDS knowledge sharing, key stakeholders were identified. Stakeholders' viewpoints were obtained through surveys and in-depth interviews, and findings and relevant insights were summarized. Based on these insights, key principles were formulated for establishing a national CDS knowledge sharing framework. Nineteen key stakeholders were recruited, including six executives from electronic health record system vendors, seven executives from knowledge content producers, three executives from healthcare provider organizations, and three additional experts in clinical informatics. Based on these stakeholders' insights, five key principles were identified for effectively sharing CDS knowledge nationally. These principles are (1) prioritize and support the creation and maintenance of a national CDS knowledge sharing framework; (2) facilitate the development of high-value content and tooling, preferably in an open-source manner; (3) accelerate the development or licensing of required, pragmatic standards; (4) acknowledge and address medicolegal liability concerns; and (5) establish a self-sustaining business model. Based on the principles identified, a roadmap for national CDS knowledge sharing was developed through the ONC's Advancing CDS initiative. The study findings may serve as a useful guide for ongoing activities by the ONC and others to establish a national framework for sharing CDS knowledge and improving clinical care.
Arandjelovic, Katarina; Eyre, Harris A; Lenze, Eric; Singh, Ajeet B; Berk, Michael; Bousman, Chad
Patients discontinue antidepressant medications due to lack of knowledge, unrealistic expectations, and/or unacceptable side effects. Shared decision making (SDM) invites patients to play an active role in their treatment and may indirectly improve outcomes through enhanced engagement in care, adherence to treatment, and positive expectancy of medication outcomes. We believe decisional aids, such as pharmacogenetic decision support tools (PDSTs), facilitate SDM in the clinical setting. PDSTs may likewise predict drug tolerance and efficacy, and therefore adherence and effectiveness on an individual-patient level. There are several important ethical considerations to be navigated when integrating PDSTs into clinical practice. The field requires greater empirical research to demonstrate clinical utility, and the mechanisms thereof, as well as exploration of the ethical use of these technologies.
This paper develops a model for the valuation of shared appreciation mortgage (SAM) and examines the effect of reduction in interest rate on the mortgage duration and share of property appreciation lender charges. The recent rise in SAM availability, as a result of some secondary market financial support and prerequisite standardization, motivates a more careful consideration of the underlying SAM value. The primary difference between the SAM model and the model for general traditional mor...
Legare, F.; Elwyn, G.; Fishbein, M.; Fremont, P.; Frosch, D.; Gagnon, M.P.; Kenny, D.A.; Labrecque, M.; Stacey, D.; St-Jacques, S.; Weijden, G.D.E.M. van der
ABSTRACT: BACKGROUND: There is considerable interest today in shared decision-making (SDM), defined as a decision-making process jointly shared by patients and their health care provider. However, the data show that SDM has not been broadly adopted yet. Consequently, the main goal of this proposal
Paul, Alexander; Nilsson, Anton
This paper estimates the effect of cost-sharing on the demand for children’s and adolescents’ use of medical care. We use a large population-wide registry dataset including detailed information on contacts with the health care system as well as family income. Two different estimation strategies...... caused by factors other than cost-sharing. We find that when care is free of charge, individuals increase their number of doctor visits by 5–10%. Effects are similar in middle childhood and adolescence, and are driven by those from low-income families. The differences across income groups cannot...... are used: regression discontinuity design exploiting age thresholds above which fees are charged, and difference- in-differences models exploiting policy changes. We also estimate combined regression discontinuity difference-in-differences models that take into account discontinuities around age thresholds...
The ITER Vacuum Vessel (VV) is a complex body supported in 9 points below lower ports by restraints in the radial, toroidal and vertical directions. The applied load produces a combination of reaction forces, which must be consistent with the design of the supported object. A reasonable sharing of the load among the supports is important for overall performance of the structure and helps to avoid excessive stress at the joints between the VV and lower ports. Optimization has been performed of the sharing of the total horizontal load applied to the ITER VV between radial and toroidal restraints. An effective method of finding simple parametric relationships between the design parameters of supports and the balance of the reaction forces has been developed. This allows purely analytical prediction of the sharing of the reaction forces for any desired stiffness of the applied restraints with no need for finite element structural analysis, and also allows control of the sharing by a proper selection of parameters of the supports. The method is based on the use of elementary mono-directional schemes - equivalent oscillators built for the main global modes, in static problems. The types of schemes and parameters of their members, related to the a-priori unknown stiffness of the VV structure under the supports, are found from consideration of the free vibration problem for the object using a 3D model of the VV with mass simulators - a series of simple eigenvalue analyses with variation of stiffness of the external restraints, that demands quite moderate computational resources. The equivalent schemes for the main modes not only enable simple one-line analytical calculation of the natural frequencies at any desired stiffness of the supports, but also indicate the contributions and balance of stiffness, to be considered in the static problem. The results of assessments of the reaction forces by direct static structural analyses for several cases are in agreement with values
Bindels, Jill; Cox, Karen; De La Haye, Jean; Mevissen, Ger; Heijing, Servé; van Schayck, Onno C P; Widdershoven, Guy; Abma, Tineke A
The objective of this study was to evaluate whether care provided in the care programmes matched the needs of older people. Care programmes were implemented in primary-care settings in the Netherlands to identify frail older people and to prevent further deterioration of health. In total, 23 older people participated in in-depth interviews. Within this study, three older people participated as co-researchers; they gathered and analysed the data together with the academic researchers. Content analysis was used to analyse the data. Two categories emerged from the data: 'Losing connections' and 'Receiving support to reconnect.' 'Losing connections' reflects the needs of older people and 'Receiving support to reconnect' reflects their experience and the appreciated aspects of the provided care. A relationship of trust with the practice nurse (PN) appeared to be an important aspect of care, as it fostered the sharing of feelings and issues other than physical or medical problems that could not be shared with the general practitioner. The PNs are experienced as connectors, who help to restore feelings of connectedness and older peoples' access to resources in the community. The relationship with the PN was experienced as valuable because of the feelings of 'connectedness' it created. Through this connectedness, older people could discuss feelings of loneliness, depression and frustration in receiving and acquiring the appropriate resources and services with the PNs. Furthermore, the relationship with the PN helped the older people to gain access to other health professionals and services. The results imply that care for frail older people should include an awareness of the importance of the trusting relationship. Nurses can play a vital role in creating a trusting relationship and are able to bridge the gap between older people and other professionals and services. © 2014 John Wiley & Sons Ltd.
McDoom, M Maya; Bokhour, Barbara; Sullivan, Meg; Drainoni, Mari-Lynn
As black women over age 50 represent a growing share of women living with HIV, understanding what helps them persist and engage in ongoing HIV care will become increasingly important. Delineating the specific roles of social support and stigma on HIV care experiences among this population remains unclear. We qualitatively examined how experiences with stigma and social support either facilitated or inhibited engagement in HIV care, from the perspective of older black women. Semi-structured interviews were conducted with 20 older black women currently receiving HIV care at primary care clinics in the Metropolitan Boston area. Women expressed that experiences with stigma and seeking support played an important role in evaluating the risks and benefits of engaging in care. Social support facilitated their ability to engage in care, while stigma interfered with their ability to engage in care throughout the course of their illness. Providers in particular, can facilitate engagement by understanding the changes in these women's lives as they struggle with stigma and disclosure while engaging in HIV care. The patient's experiences with social support and stigma and their perceptions about engagement are important considerations for medical teams to tailor efforts to engage older black women in regular HIV care.
Quigley, Laura; Lacombe-Duncan, Ashley; Adams, Sherri; Hepburn, Charlotte Moore; Cohen, Eyal
Children with medical complexity (CMC) are characterized by substantial family-identified service needs, chronic and severe conditions, functional limitations, and high health care use. Information exchange is critically important in high quality care of complex patients at high risk for poor care coordination. Written care plans for CMC are an excellent test case for how well information sharing is currently occurring. The purpose of this study was to identify the barriers to and facilitators of information sharing for CMC across providers, care settings, and families. A qualitative study design with data analysis informed by a grounded theory approach was utilized. Two independent coders conducted secondary analysis of interviews with parents of CMC and health care professionals involved in the care of CMC, collected from two studies of healthcare service delivery for this population. Additional interviews were conducted with privacy officers of associated organizations to supplement these data. Emerging themes related to barriers and facilitators to information sharing were identified by the two coders and the research team, and a theory of facilitators and barriers to information exchange evolved. Barriers to information sharing were related to one of three major themes; 1) the lack of an integrated, accessible, secure platform on which summative health care information is stored, 2) fragmentation of the current health system, and 3) the lack of consistent policies, standards, and organizational priorities across organizations for information sharing. Facilitators of information sharing were related to improving accessibility to a common document, expanding the use of technology, and improving upon a structured communication plan. Findings informed a model of how various barriers to information sharing interact to prevent optimal information sharing both within and across organizations and how the use of technology to improve communication and access to
Dreier, Adina; Rogalski, Hagen; Homeyer, Sabine; Oppermann, Roman Frank; Hingst, Peter; Hoffmann, Wolfgang
The aging population causes a sustained increase in demand of medical and nursing care services. At the same time health care professionals are aging, too. This leads to a growing number of health care gaps. Therefore, the health care system needs to be reformed. This includes a reallocation of task between some of the health care professions. This article addresses developments, potentials and limitations in the context of the future allocation of tasks between the nursing and the medical profession. Aim is to specify the future task sharing between nurses and physicians regarding expectations, requirements and limitations. We conducted questionnaire based Delphi interviews with an interdisciplinary group of experts. (type aggregation of ideas). In the future, to expert’s point of view, nurses will take over routine tasks in the medical and nursing health care supply. Task sharing by substitution is regarded with skepticism by experts. It requires a long time perspective and an early involvement of all stakeholders. Germany is at the beginning of the process of the future task sharing between nurses and physicians. The realization requires a comprehensive political support and further development of concepts including scientific implementation and evaluation.
This article provides a new argument and a new value-theoretical ground for person-centered care and shared decision making that ascribes to it the role of enabling rational choice in situations involving clinical choice. Rather than referring to good health outcomes and/or ethical grounds such as patient autonomy, it argues that a plausible justification and ground for person-centered care and shared decision making is preservation of rationality in the face of comparative non-determinacy in clinical settings. Often, no alternative treatment will be better than or equal to every other alternative. In the face of such comparative non-determinacy, Ruth Chang has argued that we can make rational decisions by invoking reasons that are created through acts of willing. This article transfers this view to clinical decision making and argues that shared decision making provides a solution to non-determinacy problems in clinical settings. This view of the role of shared decision making provides a new understanding of its nature, and it also allows us to better understand when caregivers should engage in shared decision making and when they should not. Copyright 2017 The Journal of Clinical Ethics. All rights reserved.
Lancman, Selma; Gonçalves, Rita Maria de Abreu; Cordone, Nicole Guimarães; Barros, Juliana de Oliveira
To understand the organization of and the working conditions in family health care support centers, as well as subjective experiences related to work in two of these centers. This was a case study carried out during 2011 and 2012 in two family health care support centers in Sao Paulo, Southeastern Brazil. Data were collected and analyzed using two theoretical-methodological references from ergonomics and work psychodynamics influenced, respectively, by ergonomic work analysis, developed based on open observations of a variety of tasks and on interviews and in practice in work psychodynamics, carried out using think tanks about the work. The work of the Family Health Care Support Centers in question is constituted on the bases of complex, diversified actions to be shared among the various professionals and teams involved. Innovative technological tools, which are not often adopted by primary health care professionals, are used and the parameters and productivity measures do not encompass the specificity and the complexity of the work performed. These situations require constant organizational rearrangement, especially between the Family Health Care Support Centers and the Family Health Care Teams, causing difficulties in carrying out the work as well as in constituting the identity of the professionals studied. The study attempts to lend greater visibility to the work processes at the Family Health Care Support Centers in order to contribute to advances in public policy on primary healthcare. It is important to stress that introducing changes at work, which affect both its organization and work conditions, is above all a commitment, which to be effective, must be permanent and must involve the different levels of hierarchy.
Herlitz, Anders; Munthe, Christian; Törner, Marianne; Forsander, Gun
This article argues that standard models of person-centred care (PCC) and shared decision making (SDM) rely on simplistic, often unrealistic assumptions of patient capacities that entail that PCC/SDM might have detrimental effects in many applications. We suggest a complementary PCC/SDM approach to ensure that patients are able to execute rational decisions taken jointly with care professionals when performing self-care. Illustrated by concrete examples from a study of adolescent diabetes care, we suggest a combination of moral and psychological considerations to support the claim that standard PCC/SDM threatens to systematically undermine its own goals. This threat is due to a tension between the ethical requirements of SDM in ideal circumstances and more long-term needs actualized by the context of self-care handled by patients with limited capacities for taking responsibility and adhere to their own rational decisions. To improve this situation, we suggest a counseling, self-care, adherence approach to PCC/SDM, where more attention is given to how treatment goals are internalized by patients, how patients perceive choice situations, and what emotional feedback patients are given. This focus may involve less of a concentration on autonomous and rational clinical decision making otherwise stressed in standard PCC/SDM advocacy.
Health care information technology leaders and others are coming together to share scary experiences and develop best practices to guard against crippling computer viruses, scheming hackers and other cyber threats.
2.1.4 Systolic Priority Queues . . . . . . . . . . . . . . . . . . . . . . . . . 16 2.1.5 Abstract Datatype Processors...intelligent software support is necessary to achieve good perfor- mance from HWDSs in the presence of overflow and sharing. 2.1.5 Abstract Datatype ...abstract datatype processors, which accelerate data types with mechanisms and performance similar to HWDSs. Abstract datatype instructions can reduce
Vuokila-Oikkonen, P; Janhonen, S; Vaisanen, L
The cooperative team meeting is one of the most important interventions in psychiatric care. The purpose of this study was to describe the participation of patients and significant others in cooperative team meetings in terms of unspoken stories. The narrative approach focused on storytelling. The data consisted of videotaped cooperative team meetings (n = 11) in two acute closed psychiatric wards. The QRS NVivo computer program and the Holistic Content Reading method were used. During the process of analysis, the spoken and unspoken stories were analysed at the same time. According to the results, while there was some evident shared-rhythm cooperation (the topics of discussion were shared and the participants had eye contact), there were many instances where the interaction was controlled and defined by health care professionals. This lack of shared rhythm in cooperation, as defined in terms of storytelling, was manifested as monologue and the following practices: the health care professionals controlled the storytelling by sticking to their opinions, by giving the floor or by pointing with a finger and visually scanning the participants, by interrupting the speaker or by allowing the other experts to sit passively. Implications for mental health nursing practice are discussed.
Full Text Available Abstract Background Patients with early stage melanoma have high survival rates but require long-term follow-up to detect recurrences and/or new primary tumours. Shared care between melanoma specialists and general practitioners is an increasingly important approach to meeting the needs of a growing population of melanoma survivors. Methods In-depth qualitative study based on semi-structured interviews with 16 clinicians (surgical oncologists, dermatologists and melanoma unit GPs who conduct post-treatment follow-up at two of Australia’s largest specialist referral melanoma treatment and diagnosis units. Interviews were recorded, transcribed and analysed to identify approaches to shared care in follow-up, variations in practice, and explanations of these. Results Melanoma unit clinicians utilised shared care in the follow-up of patients with early stage melanoma. Schedules were determined by patients’ clinical risk profiles. Final arrangements for delivery of those schedules (by whom and where were influenced by additional psychosocial, professional and organizational considerations. Four models of shared care were described: (a surgical oncologist alternating with dermatologist (in-house or local to patient; (b melanoma unit dermatologist and other local doctor (e.g. family physician; (c surgical oncologist and local doctor; or (d melanoma physician and local doctor. Conclusions These models of shared care offer alternative solutions to managing the requirements for long-term follow-up of a growing number of patients with stage I/II melanoma, and warrant further comparative evaluation of outcomes in clinical trials, with detailed cost/benefit analyses.
The aim of this article is to demonstrate how a novel yet important tool can facilitate family involvement in person-centred care, despite geographical distance. The author presents a case study as an in-depth example of the use of Skype in the context of palliative care at home. Skype enhanced family surveillance and symptom management, augmented shared decision making, provided a space for virtual bedside vigil, and ultimately provided the rapport necessary for optimal end of life care.
Armstrong, Melissa J
Shared decision-making (SDM) occurs when patients, families and clinicians consider patients' values and preferences alongside the best medical evidence and partner to make the best decision for a given patient in a specific scenario. SDM is increasingly promoted within Western contexts and is also being explored outside such settings, including in China. SDM and tools to promote SDM can improve patients' knowledge/understanding, participation in the decision-making process, satisfaction and trust in the healthcare team. SDM has also proposed long-term benefits to patients, clinicians, organisations and healthcare systems. To successfully perform SDM, clinicians must know their patients' values and goals and the evidence underlying different diagnostic and treatment options. This is relevant for decisions throughout stroke care, from thrombolysis to goals of care, diagnostic assessments, rehabilitation strategies, and secondary stroke prevention. Various physician, patient, family, cultural and system barriers to SDM exist. Strategies to overcome these barriers and facilitate SDM include clinician motivation, patient participation, adequate time and tools to support the process, such as decision aids. Although research about SDM in stroke care is lacking, decision aids are available for select decisions, such as anticoagulation for stroke prevention in atrial fibrillation. Future research is needed regarding both cultural aspects of successful SDM and application of SDM to stroke-specific contexts.
Asboe, Mark; Grönvall, Erik; Lassen, Henry Michael
of social activities, thus creating situations where a number of elderly people experience loneliness. This paper presents ongoing work that focuses on developing Information and Communication Technology (ICT) for nursing homes that brings together professional care activities and family initiated care. We...... a successful implementation of more costly technologies. We present a concept named Care to Share? that seeks to bring together professional and family initiated care and that assists in the articulation work of social activities in a nursing home....
Llewellyn-Jones, R H; Baikie, K A; Castell, S; Andrews, C L; Baikie, A; Pond, C D; Willcock, S M; Snowdon, J; Tennant, C C
To describe a population-based, multifaceted shared-care intervention for late-life depression in residential care as a new model of geriatric practice, to outline its development and implementation, and to describe the lessons learned during the implementation process. A large continuing-care retirement community in Sydney, Australia, providing three levels of care (independent living units, assisted-living complexes, and nursing homes). The intervention was implemented for the entire non-nursing home population (residents in independent and assisted living: N = 1,466) of the facility and their health care providers. Of the 1,036 residents whowere eligible and agreed to be interviewed, 281 (27.1%) were classified as depressed according to the Geriatric Depression Scale. INTERVENTION DESCRIPTION: The intervention included: (a) multidisciplinary collaboration between primary care physicians, facility health care providers, and the local psychogeriatric service; (b) training for primary care physicians and other facility health care providers about detecting and managing depression; and (c) depression-related health education/promotion programs for residents. The intervention was widely accepted by residents and their health care providers, and was sustained and enhanced by the facility after the completion of the study. It is possible to implement and sustain a multifaceted shared-care intervention for late-life depression in a residential care facility where local psychogeriatric services are scarce, staff-to-resident ratios are low, and the needs of depressed residents are substantial.
Full Text Available Survivors of childhood and adult-onset cancer are at lifelong risk for the development of late effects of treatment that can lead to serious morbidity and premature mortality. Regular long-term follow-up aiming for prevention, early detection and intervention of late effects can preserve or improve health. The heterogeneous and often serious character of late effects emphasizes the need for specialized cancer survivorship care clinics. Multidisciplinary cancer survivorship care requires a coordinated and well integrated health care environment for risk based screening and intervention. In addition survivors engagement and adherence to the recommendations are also important elements. We developed an innovative model for integrated care for cancer survivors, the “Personalized Cancer Survivorship Care Model”, that is being used in our clinic. This model comprises 1. Personalized follow-up care according to the principles of Person Centered Care, aiming to empower survivors and to support self management, and 2. Organization according to a multidisciplinary and risk based approach. The concept of person centered care is based on three components: initiating, integrating and safeguarding the partnership with the patient. This model has been developed as a universal model of care that will work for all cancer survivors in different health care systems. It could be used for studies to improve self efficacy and the cost-effectiveness of cancer survivorship care.
To come to know, understand and describe the experience of shared decision-making in home-care from the nurse's perspective. The literature presents the concept of shared decision-making as a complex process characterised by a partnership between the healthcare provider and the patient, which is participatory and action oriented with education and negotiation leading to agreement. Few studies have been carried out to explore and describe the events that make up the experiences of shared decision-making in home-care from the nurse's perspective. A qualitative descriptive study was implemented. Semi structured interviews were performed with 10 home-care nurses who were asked to reflect on a time in their practice when they were involved in a shared decision-making process with their patient. All data were analysed using Colaizzi's method. The following Themes were uncovered: Begin where the patient is; Education for shared decision-making; The village and shared decision-making; and Whose decision is it? Each of the four Themes contained Subthemes. The findings of this study present shared decision-making as a complex, multidimensional and fluid process. A thorough understanding of shared decision-making is essential within the multiple contexts in which care is delivered. Nurses in clinical practice need to know and understand the events of the experience of shared decision-making. A more comprehensive understanding of these facts can assist home-care nurses in their practice with regard to the application of shared decision-making. © 2013 Blackwell Publishing Ltd.
Patterson, C; Sinkewich, M; Short, J; Callas, E
The first step in redesigning the health care delivery process for ambulatory care begins with the patient and the business processes that support the patient. Patient-related business processes include patient access, service documentation, billing, follow-up, collection, and payment. Access is the portal to the clinical delivery and care management process. Service documentation, charge capture, and payment and collection are supporting processes to care delivery. Realigned provider networks now demand realigned patient business services to provide their members/customers/patients with improved service delivery at less cost. Purchaser mandates for cost containment, health maintenance, and enhanced quality of care have created an environment where every aspect of the delivery system, especially ambulatory care, is being judged. Business processes supporting the outpatient are therefore being reexamined for better efficiency and customer satisfaction. Many health care systems have made major investments in their ambulatory care environment, but have pursued traditional supporting business practices--such as multiple access points, lack of integrated patient appointment scheduling and registration, and multiple patient bills. These are areas that are appropriate for redesign efforts--all with the customer's needs and convenience in mind. Similarly, setting unrealistic expectations, underestimating the effort required, and ignoring the human elements of a patient-focused business service redesign effort can sabotage the very sound reasons for executing such an endeavor. Pitfalls can be avoided if a structured methodology, coupled with a change management process, are employed. Deloitte & Touche Consulting Group has been involved in several major efforts, all with ambulatory care settings to assist with the redesign of their business practices to consider the patient as the driver, instead of the institution providing the care.
Reynolds, Megan M
Growing research on the political economy of health has begun to emphasize sociopolitical influences on cross-national differences in population health above and beyond economic growth. While this research investigates the impact of overall public health spending as a share of GDP ("health care effort"), it has for the most part overlooked the distribution of health care spending across the public and private spheres ("public sector share"). I evaluate the relative contributions of health care effort, public sector share, and GDP to the large and growing disadvantage in U.S. life expectancy at birth relative to peer nations. I do so using fixed effects models with data from 16 wealthy democratic nations between 1960 and 2010. Results indicate that public sector share has a beneficial effect on longevity net of the effect of health care effort and that this effect is nonlinear, decreasing in magnitude as levels rise. Moreover, public sector share is a more powerful predictor of life expectancy at birth than GDP per capita. This study contributes to discussions around the political economy of health, the growth consensus, and the American lag in life expectancy. Policy implications vis-à-vis the U.S. Affordable Care Act are discussed.
Munch, Lene; Bennich, Birgitte; Arreskov, Anne B
Assessment Measure III. The experiences of the patients and families when participating in the shared care program will be explored by collecting dyadic interviews. DISCUSSION: This study will evaluate the quality of a shared care programme for patients with T2D, and provide evidence about advantages......BACKGROUND: The prevalence of type 2 diabetes (T2D) is growing globally and hospital-based outpatient clinics are burdened with increasing numbers of patients. To ensure high quality treatment and care, it is necessary to structurally reorganise the management of patients with T2D. The objective...... of this study is to test if T2D patients (who are at intermediate risk of or are already having incipient diabetic complications) jointly managed by a hospital-based outpatient clinic and general practitioners (shared care programme) have a non-inferior outcome compared to an established programme...
Huang, Kevin B; Weber, Urs; Johnson, Jennifer; Anderson, Nathanial; Knies, Andrea K; Nhundu, Belinda; Bautista, Cynthia; Poskus, Kelly; Sheth, Kevin N; Hwang, David Y
An intensive care unit (ICU) patient's primary care physician (PCP) may be able to assist family with certain ICU shared medical decisions. We explored whether families of patients in nonopen ICUs who nevertheless report involvement of a patient's PCP in medical decision making are more satisfied with ICU shared decision making than families who do not. Between March 2013 and December 2015, we administered the Family Satisfaction in the ICU 24 survey to family members of adult neuroscience ICU patients. We compared the mean score for the survey subsection regarding shared decision making (graded on a 100-point scale), as well as individual survey items, between those who reported the patient's PCP involvement in any medical decision making versus those who did not. Among 263 respondents, there was no difference in mean overall decision-making satisfaction scores for those who reported involvement (81.1; SD = 15.2) versus those who did not (80.1; SD = 12.8; P = .16). However, a higher proportion reporting involvement felt completely satisfied with their 1) inclusion in the ICU decision making process (75.9% vs 61.4%; P = .055), and 2) control over the care of the patient (73.6% vs 55.6%; P = .02), with no difference regarding consistency of clinical information provided by the medical team (64.8% vs 63.5%; P = 1.00). Families who report involvement of a patient's PCP in medical decision making for critically ill patients may be more satisfied than those who do not with regard to specific aspects of ICU decision making. Further research would help understand how best to engage PCPs in shared decisions. © Copyright 2018 by the American Board of Family Medicine.
Nasi, Greta; Cucciniello, Maria; Guerrazzi, Claudia
Since the advent of smartphones, mHealth has risen to the attention of the health care system as something that could radically change the way health care has been viewed, managed, and delivered to date. This is particularly relevant for cancer, as one of the leading causes of death worldwide, and for cancer supportive care, since patients and caregivers have key roles in managing side effects. Given adequate knowledge, they are able to expect appropriate assessments and interventions. In this scenario, mHealth has great potential for linking patients, caregivers, and health care professionals; for enabling early detection and intervention; for lowering costs; and achieving better quality of life. Given its great potential, it is important to evaluate the performance of mHealth. This can be considered from several perspectives, of which organizational performance is particularly relevant, since mHealth may increase the productivity of health care providers and as a result even the productivity of health care systems. This paper aims to review studies on the evaluation of the performance of mHealth, with particular focus on cancer care and cancer supportive care processes, concentrating on its contribution to organizational performance, as well as identifying some indications for a further research agenda. We carried out a review of literature, aimed at identifying studies related to the performance of mHealth in general or focusing on cancer care and cancer supportive care. Our analysis revealed that studies are almost always based on a single dimension of performance. Any evaluations of the performance of mHealth are based on very different methods and measures, with a prevailing focus on issues linked to efficiency. This fails to consider the real contribution that mHealth can offer for improving the performance of health care providers, health care systems, and the quality of life in general. Further research should start by stating and explaining what is meant
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.
Rubak, Sune L M; Mainz, Jan; Rubak, Jens M
Shared care programmes have been introduced in Denmark for areas, such as diabetes, asthma, and dementia. Over a three-year period, the communication and co-operation between the health sectors have improved. Specific demands on hospital referral and discharge letters have resulted in improved...... quality of contents and structure. This review shows that there is limited ongoing research on shared care and that the end points including formulations like "improved co-operation" have been too broad. Almost no research is available on specific improvements obtained by shared care. The study shows...
Fraze, Taressa K; Lewis, Valerie A; Tierney, Emily; Colla, Carrie H
Accountable care organizations (ACOs), a primary care-centric delivery and payment model, aim to promote integrated population health, which may improve care for those with chronic conditions such as diabetes. Research has shown that, overall, the ACO model is effective at reducing costs, but there is substantial variation in how effective different types of ACOs are at impacting costs and improving care delivery. This study examines how ACO organizational characteristics - such as composition, staffing, care management, and experiences with health reform - were associated with quality of care delivered to patients with diabetes. Secondary data were analyzed retrospectively to examine Medicare Shared Savings Program (MSSP) ACOs' performance on diabetes metrics in the first 2 years of ACO contracts. Ordinary least squares was used to analyze 162 MSSP ACOs with publicly available performance data and the National Survey of ACOs. ACOs improved performance significantly for patients with diabetes between contract years 1 and 2. In year 1, also having a private payer contract and an increased number of services within the ACO were positively associated with performance, while having a community health center or a hospital were negatively associated with performance. Better performance in year 1 was negatively associated with improved performance in year 2. This study found that ACOs substantively improved diabetes management within initial contract years. ACOs may need different types of support throughout their contracts to ensure continued improvements in performance.
Beaulac, Julie; Edwards, Jeanette; Steele, Angus
Aim To investigate the implementation and initial impact of the Physician Integrated Network (PIN) mental health indicators, which are specific to screening and managing follow-up for depression, in three primary care practices with Shared Mental Health Care in Manitoba. Manitoba Health undertook a primary care renewal initiative in 2006 called the PIN, which included the development of mental health indicators specific to screening and managing follow-up for depression. These indicators were implemented in three PIN group practice sites in Manitoba, which are also part of Shared Mental Health Care. The design was a non-experimental longitudinal design. A formative evaluation investigated the implementation and initial impact of the mental health indicators using mixed methods (document review, survey, and interview). Quantitative data was explored using descriptive and comparative statistics and a content and theme analysis of the qualitative interviews was conducted. Survey responses were received from 32 out of 36 physicians from the three sites. Interviews were conducted with 15 providers. Findings This evaluation illustrated providers' perceived attitudes, knowledge, skills, and behaviours related to recognizing and treating depression and expanded our understanding of primary care processes related to managing depression related to the implementation of a new initiative. Depression is viewed as an important problem in primary care practice that is time consuming to diagnose, manage and treat and requires further investigation. Implementation of the PIN mental health indicators was variable across sites and providers. There was an increase in use of the indicators across time and a general sentiment that benefits of screening outweigh the costs; however, the benefit of screening for depression remains unclear. Consistent with current guidelines, a question the findings of this evaluation suggests is whether there are more effective ways of having an impact on
Boland, Laura; McIsaac, Daniel I; Lawson, Margaret L
To explore multiple stakeholders' perceived barriers to and facilitators of implementing shared decision making and decision support in a tertiary paediatric hospital. An interpretive descriptive qualitative study was conducted using focus groups and interviews to examine senior hospital administrators', clinicians', parents' and youths' perceived barriers to and facilitators of shared decision making and decision support implementation. Data were analyzed using inductive thematic analysis. Fifty-seven stakeholders participated. Six barrier and facilitator themes emerged. The main barrier was gaps in stakeholders' knowledge of shared decision making and decision support. Facilitators included compatibility between shared decision making and the hospital's culture and ideal practices, perceptions of positive patient and family outcomes associated with shared decision making, and positive attitudes regarding shared decision making and decision support. However, youth attitudes regarding the necessity and usefulness of a decision support program were a barrier. Two themes were both a barrier and a facilitator. First, stakeholder groups were uncertain which clinical situations are suitable for shared decision making (eg, new diagnoses, chronic illnesses, complex decisions or urgent decisions). Second, the clinical process may be hindered if shared decision making and decision support decrease efficiency and workflow; however, shared decision making may reduce repeat visits and save time over the long term. Specific knowledge translation strategies that improve shared decision making knowledge and match specific barriers identified by each stakeholder group may be required to promote successful shared decision making and decision support implementation in the authors' paediatric hospital.
Armando Sergio de Aguiar Filho
Full Text Available Introduction: The role of sharing information and knowledge which tends to lead to a new understanding of distribution channels, allowing the maturation of sharing concept and its relationship to the process of information management. This interaction arises range of alternatives par as organizations relate internally with employees and externally with your audience. Objects: The goal is to survey and presentation of studies related to information sharing and knowledge channels, trying to identify its correlates in the area of administration. Methodology: The work was developed from a literature search. For both sought to initially align the concepts and terminology of information science area and a second time to identify a differentiated approach to sharing that would contribute to validate the interdisciplinary character of the information area and the contribution that other areas can make to the studies of information management and knowledge. Results: The analysis of the survey indicated considerations relevant to the understanding of the various approaches used in relation to the sharing of channels, as well as the common and different characteristics of these media and the impact on their dynamics. Conclusions: The Support Group terminology is one of several approaches used in the sharing of information and knowledge, and, like the other approaches presented to assess and promote better information services to meet the specific demands.
Huy Ming Lim
Full Text Available The Institute of Medicine’s (IOM 2001 landmark report, Crossing the Quality Chasm: A New Health System for the 21st Century, identified patient-centeredness as one of the fundamental attributes of quality health care, alongside safety, effectiveness, timeliness, efficiency, and equity. The IOM defined patient-centeredness as “providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions.” This concept of patient-centered care represents a paradigm shift from the traditional disease-oriented and physician-centered care, grounding health care in the subjective experience of illness and the needs and preferences of individual patients rather than the evaluation and treatment of diseases which emphasizes on leveraging clinical expertise and evidence derived from population-based studies. Regrettably, despite the ubiquitous talk about patient-centered care in modern health care, shared decision-making and effective physician-patient communication—the two cruxes of patient-centered care—are yet to become the norms. Strategies to promote and enhance shared decision-making and effective communication between clinicians and patients should be rigorously implemented to establish a health care system that truly values patients as individuals and turn the rhetoric of patient-centered care into reality.
Wilk, S; Michalowski, W; O'Sullivan, D; Farion, K; Sayyad-Shirabad, J; Kuziemsky, C; Kukawka, B
The purpose of this study was to create a task-based support architecture for developing clinical decision support systems (CDSSs) that assist physicians in making decisions at the point-of-care in the emergency department (ED). The backbone of the proposed architecture was established by a task-based emergency workflow model for a patient-physician encounter. The architecture was designed according to an agent-oriented paradigm. Specifically, we used the O-MaSE (Organization-based Multi-agent System Engineering) method that allows for iterative translation of functional requirements into architectural components (e.g., agents). The agent-oriented paradigm was extended with ontology-driven design to implement ontological models representing knowledge required by specific agents to operate. The task-based architecture allows for the creation of a CDSS that is aligned with the task-based emergency workflow model. It facilitates decoupling of executable components (agents) from embedded domain knowledge (ontological models), thus supporting their interoperability, sharing, and reuse. The generic architecture was implemented as a pilot system, MET3-AE--a CDSS to help with the management of pediatric asthma exacerbation in the ED. The system was evaluated in a hospital ED. The architecture allows for the creation of a CDSS that integrates support for all tasks from the task-based emergency workflow model, and interacts with hospital information systems. Proposed architecture also allows for reusing and sharing system components and knowledge across disease-specific CDSSs.
Pediatric supportive care is an important aspect of cancer care as children and adolescents face unique challenges compared to adult patients. Learn more about supportive care for pediatric patients during and after treatment in this expert-reviewed summary.
'Supportive care' is a commonly used term in oncology; however, no consensus definition exists. This represents a barrier to communication in both the clinical and research settings. In this review, we propose a unifying conceptual framework for supportive care and discuss the proper use of this term in the clinical and research settings. A recent systematic review revealed several themes for supportive care: a focus on symptom management and improvement of quality of life, and care for patients on treatments and those with advanced stage disease. These findings are consistent with a broad definition for supportive care: 'the provision of the necessary services for those living with or affected by cancer to meet their informational, emotional, spiritual, social, or physical needs during their diagnostic, treatment, or follow-up phases encompassing issues of health promotion and prevention, survivorship, palliation, and bereavement.' Supportive care can be classified as primary, secondary, and tertiary based on the level of specialization. For example, palliative care teams provide secondary supportive care for patients with advanced cancer. Until a consensus definition is available for supportive care, this term should be clearly defined or cited whenever it is used.
Kon, Alexander A.; Davidson, Judy E.; Morrison, Wynne; Danis, Marion; White, Douglas B.
Objectives Shared decision-making (SDM) is endorsed by critical care organizations, however there remains confusion about what SDM is, when it should be used, and approaches to promote partnerships in treatment decisions. The purpose of this statement is to define SDM, recommend when SDM should be used, identify the range of ethically acceptable decision-making models, and present important communication skills. Methods The American College of Critical Care Medicine (ACCM) and American Thoracic Society (ATS) Ethics Committees reviewed empirical research and normative analyses published in peer-reviewed journals to generate recommendations. Recommendations approved by consensus of the full Ethics Committees of ACCM and ATS were included in the statement. Main Results Six recommendations were endorsed: 1) Definition: Shared decision-making is a collaborative process that allows patients, or their surrogates, and clinicians to make health care decisions together, taking into account the best scientific evidence available, as well as the patient’s values, goals, and preferences. 2) Clinicians should engage in a SDM process to define overall goals of care (including decisions regarding limiting or withdrawing life-prolonging interventions) and when making major treatment decisions that may be affected by personal values, goals, and preferences. 3) Clinicians should use as their “default” approach a SDM process that includes three main elements: information exchange, deliberation, and making a treatment decision. 4) A wide range of decision-making approaches are ethically supportable including patient- or surrogate-directed and clinician-directed models. Clinicians should tailor the decision-making process based on the preferences of the patient or surrogate. 5) Clinicians should be trained in communication skills. 6) Research is needed to evaluate decision-making strategies. Conclusions Patient and surrogate preferences for decision-making roles regarding value
Truglio-Londrigan, Marie; Slyer, Jason T; Singleton, Joanne K; Worral, Priscilla
The objective of this review is to identify and synthesize the best available evidence related to the meaningfulness of internal and external influences on shared-decision making for adult patients and health care providers in all health care settings.The specific questions to be answered are: BACKGROUND: Patient-centered care is emphasized in today's healthcare arena. This emphasis is seen in the works of the International Alliance of Patients' Organizations (IAOP) who describe patient-centered healthcare as care that is aimed at addressing the needs and preferences of patients. The IAOP presents five principles which are foundational to the achievement of patient-centered healthcare: respect, choice, policy, access and support, as well as information. These five principles are further described as:Within the description of these five principles the idea of shared decision-making is clearly evident.The concept of shared decision-making began to appear in the literature in the 1990s. It is defined as a "process jointly shared by patients and their health care provider. It aims at helping patients play an active role in decisions concerning their health, which is the ultimate goal of patient-centered care." The details of the shared decision-making process are complex and consist of a series of steps including:Three overall representative decision-making models are noted in contemporary literature. These three models include: paternalistic, informed decision-making, and shared decision-making. The paternalistic model is an autocratic style of decision-making where the healthcare provider carries out the care from the perspective of knowing what is best for the patient and therefore makes all decisions. The informed decision-making model takes place as the information needed to make decisions is conveyed to the patient and the patient makes the decisions without the healthcare provider involvement. Finally, the shared decision-making model is representative of a
Liu, Jun-yan; Li, Bing; Liu, Yan; Cai, Shan-bing
Because of the complicated environment requirement, the support form of foundation pit is diversified, and the brace-anchor sharing support is widely used. However, the research on the force deformation characteristics and the related aspects of the cooperative response of the brace-anchor sharing support is insufficient. The application of redundancy theory in structural engineering has been more mature, but there is little theoretical research on redundancy theory in underground engineering. Based on the idea of collaborative deformation, the paper calculates the ratio of the redundancy degree of the cooperative deformation by using the local reinforcement design method and the structural component redundancy parameter calculation formula based on Frangopol. Combined with the engineering case, through the calculation of the ratio of cooperative deformation redundancy in the joint of brace-anchor sharing support. This paper explores the optimal anchor distribution form under the condition of cooperative deformation, and through the analysis and research of displacement field and stress field, the results of the collaborative deformation are validated by comparing the field monitoring data. It provides theoretical basis for the design of this kind of foundation pit in the future.
Walling, Anne M; Tisnado, Diana; Ettner, Susan L; Asch, Steven M; Dy, Sydney M; Pantoja, Philip; Lee, Martin; Ahluwalia, Sangeeta C; Schreibeis-Baum, Hannah; Malin, Jennifer L; Lorenz, Karl A
Although recent randomized controlled trials support early palliative care for patients with advanced cancer, the specific processes of care associated with these findings and whether these improvements can be replicated in the broader health care system are uncertain. The aim of this study was to evaluate the occurrence of palliative care consultation and its association with specific processes of supportive care in a national cohort of Veterans using the Cancer Quality ASSIST (Assessing Symptoms Side Effects and Indicators of Supportive Treatment) measures. We abstracted data from 719 patients' medical records diagnosed with advanced lung, colorectal, or pancreatic cancer in 2008 over a period of three years or until death who received care in the Veterans Affairs Health System to evaluate the association of palliative care specialty consultation with the quality of supportive care overall and by domain using a multivariate regression model. All but 54 of 719 patients died within three years and 293 received at least one palliative care consult. Patients evaluated by a palliative care specialist at diagnosis scored seven percentage points higher overall (P specialist consultation is associated with better quality of supportive care in three advanced cancers, predominantly driven by improvements in information and care planning. This study supports the effectiveness of early palliative care consultation in three common advanced cancers within the Veterans Affairs Health System and provides a greater understanding of what care processes palliative care teams influence. Published by Elsevier Inc.
Rotman, M.; John, M.
The radiation therapist, concerned with the disease process and all the technical intricacies of treatment, has usually not been involved in managing the supportive aspects of caring for the patient. Yet, of the team of medical specialists and allied health personnel required in oncology, the radiation therapist is the one most responsible for overseeing the total care of the cancer patient. At times this might include emotional support, prevention and correction of tissue dysfunction, augmentation of nutrition, metabolic and electrolyte regulation, rehabilitation, and vocational support. This chapter is a brief overview of a considerable volume of literature that has occupied the interest of a rather small group of physicians, nutritionists, and psychologists. The discussion highlights the special management problems of the normal-tissue effects of radiation, the related nutritional aspects of cancer care, and certain emotional and pathologic considerations
Shepherd, H L; Tattersall, M H N; Butow, P N
Most cancer patients in westernised countries now want all information about their situation, good or bad, and many wish to be involved in decision-making. The attitudes to and use of shared decision-making (SDM) by cancer doctors is not well known. Australian cancer clinicians treating breast, colorectal, gynaecological, haematological, or urological cancer were surveyed to identify their usual approach to decision-making and their comfort with different decision-making styles when discussin...
Valentine, J P; Martin, C J
To evaluate job sharing for registrars at Princess Margaret Hospital for Children, Perth, by seeking responses from members of the relevant medical teams. A questionnaire was sent to all 126 medical staff within the hospital (and three managers in medical administration) asking their views on job sharing for registrars. Whether job sharing should continue, who should do it, at what stage of training, and the effects on patient care. Among the 77 respondents (60%) there was broad support for the continuation of job sharing at the hospital: only 5 of 37 consultants and 2 of 19 non-job sharing registrars rejected the idea (with a further 4 consultants uncertain). 43% Of the consultants who had worked with job sharing registrars thought continuity of care was adversely affected. The committee for physician training of the Royal Australasian College of Physicians emphasises that advanced training should be flexible, with a wide range of opportunities for individuals to plan an appropriate training programme in line with their personal goals. This study has shown that job sharing for registrars at Princess Margaret Hospital for Children allows this choice. Action on concerns over any adverse effects on patient care should resolve any persisting disquiet.
Jefford, Michael; Emery, Jon; Grunfeld, Eva; Martin, Andrew; Rodger, Paula; Murray, Alexandra M.; De Abreu Lourenco, Richard; Heriot, Alexander; Phipps-Nelson, Jo; Guccione, Lisa; King, Dorothy; Lisy, Karolina; Tebbutt, Niall; Burgess, Adele; Faragher, Ian
Background Colorectal cancer (CRC) is the most common cancer affecting both men and women. Survivors of CRC often experience various physical and psychological effects arising from CRC and its treatment. These effects may last for many years and adversely affect QoL, and they may not be adequately addressed by standard specialist-based follow-up. Optimal management of these effects should harness the expertise of both primary care and specialist care. Shared models of care (involving both the...
Full Text Available Jacqueline A Pesa1, Jill Van Den Bos2, Travis Gray2, Colleen Hartsig2, Robert Brett McQueen3, Joseph J Saseen3, Kavita V Nair31Janssen Scientific Affairs, LLC, Louisville, CO, USA; 2Milliman, Inc, Denver, CO, USA; 3University of Colorado Anschutz Medical Campus, Aurora, CO, USAObjective: To assess the impact of patient cost-sharing for antihypertensive medications on the proportion of days covered (PDC by antihypertensive medications, medical utilization, and health care expenditures among commercially insured individuals assigned to different risk categories.Methods: Participants were identified from the Consolidated Health Cost Guidelines (CHCG database (January 1, 2006–December 31, 2008 based on a diagnosis (index claim for hypertension, continuous enrollment ≥12 months pre- and post-index, and no prior claims for antihypertensive medications. Participants were assigned to: low-risk group (no comorbidities, high-risk group (1+ selected comorbidities, or very high-risk group (prior hospitalization for 1+ selected comorbidities. The relationship between patient cost sharing and PDC by antihypertensive medications was assessed using standard linear regression models, controlling for risk group membership, and various demographic and clinical factors. The relationship between PDC and health care service utilization was subsequently examined using negative binomial regression models.Results: Of the 28,688 study patients, 66% were low risk. The multivariate regression model supported a relationship between patient cost sharing per 30-day fill and PDC in the following year. For every US$1.00 increase in cost sharing, PDC decreased by 1.1 days (P < 0.0001. Significant predictors of PDC included high risk, older age, gender, Charlson Comorbidity Index score, geography, and total post-index insurer- and patient-paid costs. An increase in PDC was associated with a decrease in all-cause and hypertension-related inpatient, outpatient, and emergency
Interactive CaringTV® is a Finnish innovation that was developed by Laurea University of Applied Sciences in 2006. CaringTV was developed through action research during three research projects. The aim of interactive CaringTV is to support the health and well-being of elderly people living in their own homes. The Safe Home project was based on action research, userdriven methods, and a case study. User-driven methods were applied in planning, implementing and evaluating the programme and eServices e.g. testing and evaluating peer support, including eConsultation as the methods for supporting clients´ coping with life in their own homes. Costeffectiveness and process modelling were studied through the case study. The user-driven approach and the collected data formed the basis for the interactive programme. The online CaringTV programme included content to: support everyday life for the elderly, safety, and activities of daily living, support social relationships, participate in rehabilitation and physical exercises, manage self-care, and health issues. Active participation in the CaringTV programme provided functional ability and everyday coping as well as a meaningful activity in everyday life. CaringTV is an interactive platform to support elderly in their everyday life and help them cope at home. User-driven methods enable participants´ active involvement in planning interactive and online programmes and eServices via CaringTV. The ultimate goal of the CaringTV is to support elderly´s health, wellbeing and interaction. CaringTV empowers elderly people to take responsibility for their own health care as part of healthy ageing.
National Health Insurance has been implemented since 1st January 2014. A number of new policies have been established including multilevel referral system. The multilevel referral system classified health care center into three levels, it determined that the flow of patient treatment should be started from first level health care center. There are 144 kind of diseases that must be treat in the first level which mainly consists of general physicians. Unfortunately, competence of the physician in the first level may not fulfil the standard competence yet. To improved the physisians knowledge, government has created many events to accelerate knowledge sharing. However, it still needs times and many resources to give significan results. Expert system is kind of software that provide consulting services to non-expert users in accordance with the area of its expertise. It can improved effectivity and efficiency of knowledge sharing and learning. This research was developed a model of TB diagnose expert system which comply with the standard procedure of TB diagnosis and regulation. The proposed expert system has characteristics as follows provide facility to manage multimedia clinical data, supporting the complexity of TB diagnosis (combine rule-based and case-based expert system), interactive interface, good usability, multi-platform, evolutionary.
Full Text Available Background: Community care workers (CCWs in rural South Africa provide medical, personal, household, educational, and social care services to their clients. However, little understanding exists on how provision of services is approached within a household, taking into account available social support networks. Objective: The aim of this study was to generate an understanding of the processes that underpin the provision of care by CCWs in rural households and their engagement with clients, primary caregivers (PCGs, and other members of the social support network. Design: We analysed in-depth interviews conducted in a triad of participants involved in a home-based care (HBC encounter – 32 clients, 32 PCGs, and 17 CCWs. For each triad, a purposefully selected CCW was linked with a purposefully selected client and the corresponding PCG using maximum variation sampling. Three coders used an inductive content analysis method to describe participants’ references to the nuances of processes followed by CCWs in servicing HBC clients. Written informed consent was obtained from all participants. Findings: The results suggest that, by intuition and prior knowledge, CCWs treated each household uniquely, depending on the clients’ care needs, cooperation, availability of a social network, and the reliability and resilience of the social support system for the client. Four distinct processes took place in rural households: needs assessment for care, rationing of care, appraisal of care, and reinforcement of a social support system. However, there was no particular order or sequence established for these processes, and caregivers followed no prescribed or shared standards. Conclusions: CCWs bring a basket of services to a household, but engage in a constant, dynamic, and cyclical process of weighing needs against services provided. The service package is uniquely crafted and tailored for each household, depending on the absorptive capacity of the social
Steffensen, Karina Dahl; Vinter, Mette; Crüger, Dorthe
The benefits of shared decision-making (SDM) in health care delivery are well documented, but implementing SDM at the institutional level is challenging, particularly when patients have complex illnesses and care needs, as in cancer. Denmark's Lillebaelt Hospital, in creating The Patient's Cancer...... championed. It organized multiple demonstration projects focused on use of decision aids, patient-reported outcome measures, and better communication tools and practices. It designed programs to train clinicians in the art of doctor-patient communication. It used research evidence to inform development...... of the decision aids that its clinicians use with their patients. And it rigorously measured SDM performance in an ongoing fashion so that progress could be tracked and refined to ensure continuous improvement. Initial data on the institution's SDM initiatives from the Danish national annual survey of patients...
Full Text Available This paper aims to identify conversational interaction patterns in pediatrics with a focus on the shared decision-making process and dialogue about emotions in doctor–patient relationships. We documented conversations in 163 visits by 168 children in pediatric primary care; we observed, audiorecordered, transcribed and analyzed them with specific instruments of analysis of doctor patient relationship. Our survey was conducted in four pediatric primary care practices and 15 health providers were involved. The data collection period lasted three months and was undertaken twice a week on days. We analyzed visits with Verona Coding Definitions of Emotional Sequences (VR-CoDES and Observing Patient Involvement in Shared Decision Making (OPTION instruments. Frequencies of emotions’ signals (cues/concerns obtained using VR-CoDES were analyzed and compared with the OPTION ratings. We documented 318 cues/concerns for parents and 167 for children. The relationship between cues/concerns and Healthcare Providers responses was strongest in dialogues between parents and pediatricians. The conversational patterns focused on the procedures of the care, with little opportunities of dialogue about emerging emotions. We also observed limited possibilities for participant involvement, especially by children, due to several difficulties integrating dialogue about emotions and concordance processes. The conversations seemed to be characterized by rarity of shared decision making or attention to the informational value of children’s emotions. It could be useful to implement psychological interventions to achieve an enrichment of the dialogue between participants, helping them to incorporate emotions into conversations and to recognize decisional competences, necessary to concordance processes.
Liu, Xia; Peyton, Liam; Kuziemsky, Craig
Health care is increasingly provided to citizens by a network of collaboration that includes multiple providers and locations. Typically, that collaboration is on an ad-hoc basis via phone calls, faxes, and paper based documentation. Internet and wireless technologies provide an opportunity to improve this situation via electronic data sharing. These new technologies make possible new ways of working and collaboration but it can be difficult for health care organizations to understand how to use the new technologies while still ensuring that their policies and objectives are being met. It is also important to have a systematic approach to validate that e-health processes deliver the performance improvements that are expected. Using a case study of a palliative care patient receiving home care from a team of collaborating health organizations, we introduce a framework based on requirements engineering. Key concerns and objectives are identified and modeled (privacy, security, quality of care, and timeliness of service). And, then, proposed business processes which use new technologies are modeled in terms of these concerns and objectives to assess their impact and ensure that electronic data sharing is well regulated.
Lundstrøm, Louise Hyldborg; Johnsen, Anna Thit; Ross, Lone
Background. Cancer care usually involves several health professionals from different parts of the health care system. Often, the GP has an important role. Patients’ experiences of continuity and support may be related to characteristics of health care, disease or patients. Objectives. To investig......Background. Cancer care usually involves several health professionals from different parts of the health care system. Often, the GP has an important role. Patients’ experiences of continuity and support may be related to characteristics of health care, disease or patients. Objectives...... patients experienced suboptimal cross-sectorial cooperation and supportive care. Efforts to improve cancer care cooperation may focus on the possible supportive role of the...
Sørensen, Jan; Primdahl, J; Horn, Hc
per quality-adjusted life year (QALY) threshold, shared care and nurse care were cost-effective with more than 90% probability. Nurse care was cost-effective in comparison with shared care with 75% probability. Conclusions: Shared care and nurse care seem to cost less but provide broadly similar......Objectives: To compare the cost-effectiveness of three types of follow-up for outpatients with stable low-activity rheumatoid arthritis (RA). Method: In total, 287 patients were randomized to either planned rheumatologist consultations, shared care without planned consultations, or planned nurse...... consultations. Effectiveness measures included disease activity (Disease Activity Score based on 28 joint counts and C-reactive protein, DAS28-CRP), functional status (Health Assessment Questionnaire, HAQ), and health-related quality of life (EuroQol EQ-5D). Cost measures included activities in outpatient...
Hui, David; De La Cruz, Maxine; Mori, Masanori; Parsons, Henrique A; Kwon, Jung Hye; Torres-Vigil, Isabel; Kim, Sun Hyun; Dev, Rony; Hutchins, Ronald; Liem, Christiana; Kang, Duck-Hee; Bruera, Eduardo
Commonly used terms such as "supportive care," "best supportive care," "palliative care," and "hospice care" were rarely and inconsistently defined in the palliative oncology literature. We conducted a systematic review of the literature to further identify concepts and definitions for these terms. We searched MEDLINE, PsycInfo, EMBASE, and CINAHL for published peer-reviewed articles from 1948 to 2011 that conceptualized, defined, or examined these terms. Two researchers independently reviewed each citation for inclusion and then extracted the concepts/definitions when available. Dictionaries/textbooks were also searched. Nine of 32 "SC/BSC," 25 of 182 "PC," and 12 of 42 "HC" articles focused on providing a conceptual framework/definition. Common concepts for all three terms were symptom control and quality-of-life for patients with life-limiting illness. "SC" focused more on patients on active treatment compared to other categories (9/9 vs. 8/37) and less often involved interdisciplinary care (4/9 vs. 31/37). In contrast, "HC" focused more on volunteers (6/12 vs. 6/34), bereavement care (9/12 vs. 7/34), and community care (9/12 vs. 6/34). Both "PC" and "SC/BSC" were applicable earlier in the disease trajectory (16/34 vs. 0/9). We found 13, 24, and 17 different definitions for "SC/BSC," "PC," and "HC," respectively. "SC/BSC" was the most variably defined, ranging from symptom management during cancer therapy to survivorship care. Dictionaries/textbooks showed similar findings. We identified defining concepts for "SC/BSC," "PC," and "HC" and developed a preliminary conceptual framework unifying these terms along the continuum of care to help build consensus toward standardized definitions.
Asan, Onur; Young, Henry N; Chewning, Betty; Montague, Enid
Use of electronic health records (EHRs) in primary-care exam rooms changes the dynamics of patient-physician interaction. This study examines and compares doctor-patient non-verbal communication (eye-gaze patterns) during primary care encounters for three different screen/information sharing groups: (1) active information sharing, (2) passive information sharing, and (3) technology withdrawal. Researchers video recorded 100 primary-care visits and coded the direction and duration of doctor and patient gaze. Descriptive statistics compared the length of gaze patterns as a percentage of visit length. Lag sequential analysis determined whether physician eye-gaze influenced patient eye gaze, and vice versa, and examined variations across groups. Significant differences were found in duration of gaze across groups. Lag sequential analysis found significant associations between several gaze patterns. Some, such as DGP-PGD ("doctor gaze patient" followed by "patient gaze doctor") were significant for all groups. Others, such DGT-PGU ("doctor gaze technology" followed by "patient gaze unknown") were unique to one group. Some technology use styles (active information sharing) seem to create more patient engagement, while others (passive information sharing) lead to patient disengagement. Doctors can engage patients in communication by using EHRs in the visits. EHR training and design should facilitate this. Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.
Patient-centredness is a core value of general practice; it is defined as the interpersonal processes that support the holistic care of individuals. To date, efforts to demonstrate their relationship to patient outcomes have been disappointing, whilst some studies suggest values may be more rhetoric than reality. Contextual issues influence the quality of patient-centred consultations, impacting on outcomes. The legitimate use of knowledge, or evidence, is a defining aspect of modern practice, and has implications for patient-centredness. Based on a critical review of the literature, on my own empirical research, and on reflections from my clinical practice, I critique current models of the use of knowledge in supporting individualised care. Evidence-Based Medicine (EBM), and its implementation within health policy as Scientific Bureaucratic Medicine (SBM), define best evidence in terms of an epistemological emphasis on scientific knowledge over clinical experience. It provides objective knowledge of disease, including quantitative estimates of the certainty of that knowledge. Whilst arguably appropriate for secondary care, involving episodic care of selected populations referred in for specialist diagnosis and treatment of disease, application to general practice can be questioned given the complex, dynamic and uncertain nature of much of the illness that is treated. I propose that general practice is better described by a model of Interpretive Medicine (IM): the critical, thoughtful, professional use of an appropriate range of knowledges in the dynamic, shared exploration and interpretation of individual illness experience, in order to support the creative capacity of individuals in maintaining their daily lives. Whilst the generation of interpreted knowledge is an essential part of daily general practice, the profession does not have an adequate framework by which this activity can be externally judged to have been done well. Drawing on theory related to the
...) Your share of member support costs must be non-Federal cash. (4) The Corporation's share of health care... administration costs. (1) You may provide your share of program operating costs with cash, including other...'s share of program costs? 2521.45 Section 2521.45 Public Welfare Regulations Relating to Public...
Richards, Claire A; Starks, Helene; O'Connor, M Rebecca; Bourget, Erica; Hays, Ross M; Doorenbos, Ardith Z
Most children die in neonatal and pediatric intensive care units after decisions are made to withhold or withdraw life-sustaining treatments. These decisions can be challenging when there are different views about the child's best interest and when there is a lack of clarity about how best to also consider the interests of the family. To understand how neonatal and pediatric critical care physicians balance and integrate the interests of the child and family in decisions about life-sustaining treatments. Semistructured interviews were conducted with 22 physicians from neonatal, pediatric, and cardiothoracic intensive care units in a single quaternary care pediatric hospital. Transcribed interviews were analyzed using content and thematic analysis. We identified 3 main themes: (1) beliefs about child and family interests; (2) disagreement about the child's best interest; and (3) decision-making strategies, including limiting options, being directive, staying neutral, and allowing parents to come to their own conclusions. Physicians described challenges to implementing shared decision-making including unequal power and authority, clinical uncertainty, and complexity of balancing child and family interests. They acknowledged determining the level of engagement in shared decision-making with parents (vs routine engagement) based on their perceptions of the best interests of the child and parent. Due to power imbalances, families' values and preferences may not be integrated in decisions or families may be excluded from discussions about goals of care. We suggest that a systematic approach to identify parental preferences and needs for decisional roles and information may reduce variability in parental involvement.
Full Text Available Context of case: In Portugal, the integration of care services is still in its infancy. Nevertheless, a home support service called SAD (Serviço de Apoio Domiciliário—Domiciliary Support Service, provided by non-profit institutions to the elderly population is believed to be a first approach to integrated care. Purpose: The aim of this work is to describe and discuss the services provided by the institutions that participate in SAD and understand if this service is the first step in a change towards integrated care. Data sources: The main data sources were documents provided by institutions like INE (Instituto Nacional de Estatística—National Institute of Statistics and a questionnaire that was submitted to 75 institutions in order to capture: (a demographic and structural data; (b the type of information that the professionals need to fulfil their jobs and (c the kind of relationship and constraints, if they exist, to better integration, between the institutions that provide SAD and the patients, the social and health systems, and other entities. Conclusion and discussion: SAD seems to have been promoting a formal collaboration between several entities in the social and health systems. The information shared between these institutions has increased, but where cooperation in care service provision is concerned this seldom surpasses the social bounds because health care is still difficult to integrate.
Full Text Available The paper is concerned with support for distributed groups of creative knowledge workers: in this case designers. We consider requirements that designers have regarding internalisation and externalisation of ideas and concepts as well as requirements relating to collaboration. We review an online system whose facilities for the graphical representation of data were found to be popular. The evaluation was in the context of a group task and the results, including instances of tacit knowledge sharing, have led us to formulate a number of recommendations as to how such systems might be made still more effective for collaborative working.
Kato, Hirotaka; Goto, Rei
Assessing the impact of cost sharing on healthcare utilization is a critical issue in health economics and health policy. It may affect the utilization of different services, but is yet to be well understood. This paper investigates the effects of reducing cost sharing for outpatient services on hospital admissions by exploring a subsidy policy for children's outpatient services in Japan. Data were extracted from the Japanese Diagnosis Procedure Combination database for 2012 and 2013. A total of 366,566 inpatients from 1390 municipalities were identified. The impact of expanding outpatient care subsidy on the volume of inpatient care for 1390 Japanese municipalities was investigated using the generalized linear model with fixed effects. A decrease in cost sharing for outpatient care has no significant effect on overall hospital admissions, although this effect varies by region. The subsidy reduces the number of overall admissions in low-income areas, but increases it in high-income areas. In addition, the results for admissions by type show that admissions for diagnosis increase particularly in high-income areas, but emergency admissions and ambulatory-care-sensitive-condition admissions decrease in low-income areas. These results suggest that outpatient and inpatient services are substitutes in low-income areas but complements in high-income ones. Although the subsidy for children's healthcare would increase medical costs, it would not improve the health status in high-income areas. Nevertheless, it could lead to some health improvements in low-income areas and, to some extent, offset costs by reducing admissions in these regions.
In integrated delivery networks (IDNs) with complex management structures, shared governance in nursing is a proven model for health care delivery. After Advocate Health Care, the largest IDN in Illinois, implemented shared governance in its nursing, clinical, and non-clinical departments and restructured the organization's technology use, it benefited greatly from a new, shared decision-making process. After listening to business consultants, clinical professionals, and information technology experts, hospitals should take the blended, or comprehensive, approach to new projects. They can succeed by promoting communication supported by an integrated computer platform that helps nursing and business executives reach a consensus. Traditional modes of operation, in which individual administrative, clinical, and technology departments separately introduce innovation, do not deliver an advantage. However, models that incorporate open communication, integration, and knowledge sharing will help large IDNs and other complex health care organizations make the best possible use of their resources and investments.
Ozbolt, Judy; Ozdas, Asli; Waitman, Lemuel R; Smith, Janis B; Brennan, Grace V; Miller, Randolph A
The application of principles and methods of cybernetics permits clinicians and managers to use feedback about care effectiveness and resource expenditure to improve quality and to control costs. Keys to the process are the specification of therapeutic goals and the creation of an organizational culture that supports the use of feedback to improve care. Daily feedback on the achievement of each patient's therapeutic goals provides tactical decision support, enabling clinicians to adjust care as needed. Monthly or quarterly feedback on aggregated goal achievement for all patients on a clinical pathway provides strategic decision support, enabling clinicians and managers to identify problems with supposed "best practices" and to test hypotheses about solutions. Work is underway at Vanderbilt University Medical Center to implement feedback loops in care and management processes and to evaluate the effects.
Costello, Aimee G; Nugent, Bethany D; Conover, Noelle; Moore, Amanda; Dempsey, Kathleen; Tersak, Jean M
With an increasing number of childhood cancer survivors (CCSs), determining the best model of survivorship transition care is becoming a growing priority. Shared care between pediatric oncology and adult primary care is often necessary, making survivorship a time of transition, but effective standard models are lacking. We sought to provide a more integrated approach to transition using telemedicine. Recruited primary care provider/CCS dyads were instructed to log-in to a password-protected virtual meeting room using telemedicine equipment at the time or a regularly scheduled office visit. Dyads were joined by a pediatric survivorship clinic team member who conducted the telemedicine portion of the transition visit, which consisted of the review of an individualized treatment summary and care plan. Postquestionnaires were developed to evaluate key points such as fund of knowledge, satisfaction with the visit, and effectiveness of this electronic tool. There were 19 transition visits conducted, 13 of which used the telemedicine equipment as planned. Those that did not use the equipment were primarily unable to due to technical difficulties. Postquestionnaires were overall positive, confirming increased knowledge, comfort and abilities, and patient satisfaction in survivorship care. Negative comments were primarily related to equipment difficulties. A gap still remains in helping CCSs transition from oncology to primary care and this pilot study offered insights into how we might better bridge that gap through the use of telemedicine. Further research is needed to refine the transition process for CCSs, including evaluation and testing models for standard of care.
Shilling, V; Bailey, S; Logan, S; Morris, C
Parents of disabled children often seek support from their peers. The shared experience between parents appears to be a crucial mediating factor. Understanding how a sense of shared experience is fostered can help to design and evaluate services that seek to provide peer support. We carried out a qualitative study involving semi-structured interviews and focus groups. Participants were 12 parents and 23 befrienders who had contact with the Face2Face one-to-one befriending service in Devon and Cornwall during a 12-month period, and 10 professionals from health, social care and education. Formal structures and processes in place such as training and ongoing supervision and support were highly valued as was the highly personalized, confidential, flexible, one-to-one at-home nature of the service. Crucial to establishing rapport was putting the right people together and ensuring a good match between befrienders and parents. Clearly, the befriending parent has to be emotionally prepared to provide help. However, if the parent being offered support was not ready to accept help at the time it was offered or the type of support was not right for them, they are less likely to engage with the service. Organizational and process factors as well as characteristics of the parents offering and receiving support contribute to the sense of shared experience in one-to-one peer support. These factors interact to influence whether peer support is effective and should be explicitly considered when designing and evaluating services. © 2015 John Wiley & Sons Ltd.
Prof. dr. Jean Pierre Wilken
The research group Participation, Care and Support is part of the Research Centre for Social Innovation of Utrecht University for Applied Sciences. This is a transdisciplinary research centre, doing practice based research focused on relevant social issues, connecting different fields like social
King, Valerie J; Davis, Melinda M; Gorman, Paul N; Rugge, J Bruin; Fagnan, L J
Shared decision making (SDM) and decision aids (DAs) increase patients' involvement in health care decisions and enhance satisfaction with their choices. Studies of SDM and DAs have primarily occurred in academic centers and large health systems, but most primary care is delivered in smaller practices, and over 20% of Americans live in rural areas, where poverty, disease prevalence, and limited access to care may increase the need for SDM and DAs. To explore perceptions and practices of rural primary care clinicians regarding SDM and DAs. Cross-sectional survey. Setting and Participants Primary care clinicians affiliated with the Oregon Rural Practice-based Research Network. Surveys were returned by 181 of 231 eligible participants (78%); 174 could be analyzed. Two-thirds of participants were physicians, 84% practiced family medicine, and 55% were male. Sixty-five percent of respondents were unfamiliar with the term shared decision making, but following definition, 97% reported that they found the approach useful for conditions with multiple treatment options. Over 90% of clinicians perceived helping patients make decisions regarding chronic pain and health behavior change as moderate/hard in difficulty. Although 69% of respondents preferred that patients play an equal role in making decisions, they estimate that this happens only 35% of the time. Time was reported as the largest barrier to engaging in SDM (63%). Respondents were receptive to using DAs to facilitate SDM in print- (95%) or web-based formats (72%), and topic preference varied by clinician specialty and decision difficulty. Rural clinicians recognized the value of SDM and were receptive to using DAs in multiple formats. Integration of DAs to facilitate SDM in routine patient care may require addressing practice operation and reimbursement.
Naslund, J A; Aschbrenner, K A; Marsch, L A; Bartels, S J
People with serious mental illness are increasingly turning to popular social media, including Facebook, Twitter or YouTube, to share their illness experiences or seek advice from others with similar health conditions. This emerging form of unsolicited communication among self-forming online communities of patients and individuals with diverse health concerns is referred to as peer-to-peer support. We offer a perspective on how online peer-to-peer connections among people with serious mental illness could advance efforts to promote mental and physical wellbeing in this group. In this commentary, we take the perspective that when an individual with serious mental illness decides to connect with similar others online it represents a critical point in their illness experience. We propose a conceptual model to illustrate how online peer-to-peer connections may afford opportunities for individuals with serious mental illness to challenge stigma, increase consumer activation and access online interventions for mental and physical wellbeing. People with serious mental illness report benefits from interacting with peers online from greater social connectedness, feelings of group belonging and by sharing personal stories and strategies for coping with day-to-day challenges of living with a mental illness. Within online communities, individuals with serious mental illness could challenge stigma through personal empowerment and providing hope. By learning from peers online, these individuals may gain insight about important health care decisions, which could promote mental health care seeking behaviours. These individuals could also access interventions for mental and physical wellbeing delivered through social media that could incorporate mutual support between peers, help promote treatment engagement and reach a wider demographic. Unforeseen risks may include exposure to misleading information, facing hostile or derogatory comments from others, or feeling more uncertain
Pediatric supportive care includes managing issues from the cancer diagnosis, through treatment, and into adult survivorship. Get detailed information addressing pediatric supportive care including psychologic, family, and end-of-life concerns in this clinician summary.
Leite, Jose Carlos de Carvalho; Drachler, Maria de L.; Killett, Anne; Kale, Swati; Nacul, Luis; McArthur, Maggie; Hong, Chia Swee; O'Driscoll, Lucy; Pheby, Derek; Campion, Peter; Lacerda, Elliana; Poland, Fiona
Background: Needs-based resource allocation is fundamental to equitable care provision, which can meet the often-complex, fluctuating needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). This has posed challenges both for those providing and those seeking support providers, in building shared understanding of the condition and of actions to address it. This qualitative study reports on needs for equity in health and social care expressed by adults living with CFS/...
Altin, Sibel Vildan; Stock, Stephanie
Findings on the association between health literacy skills and patient-reported outcomes such as satisfaction with health care delivery are scarce. We explored the extent to which subjective health literacy skills and the perception of the application of patient-centered communication and shared decision-making are associated with patient's satisfaction with care received by their general practitioner (GP). A nationwide cross sectional survey was administered in a random sample of 1125 German adults. A binary logistic regression model controlling for demographics and health status was used to examine the independent contributions of predictor variables (i.e. subjective health literacy, shared decision-making, patient-centered communication) on satisfaction with care received by the GP. Respondents with sufficient health literacy skills were 2.06 times as likely (95 % [CI]: 1.002-4.264) and those who were involved in shared decision-making by their GP were 4.02 times as likely (95 % [CI]: 1.849-8.744) to be satisfied with care received by their GP. Respondents who experienced that their GP explained things in an easy to understand way (OR: 4.44; 95 % [CI]: 1.817-10.869), knew important things about their medical history (OR: 3.46; 95 % [CI]: 1.502-7.994) and spent enough time with them, also reported to be more satisfied (OR: 3.12; 95 % [CI]: 1.410-6.905). German adults having sufficient subjective health literacy skills and experiencing a more patient-centered relationship with their GP are more likely to be satisfied with care. These findings are important for health care organizations aiming to respond to health literacy needs of patients.
Northcott, Sarah; Hilari, Katerina
There is often a need for increased support following a stroke. This study explored what types of support are provided by different network members and what support functions are most valued. Adults with first stroke were recruited from a stroke unit and participated in in-depth interviews 8-15 months poststroke. Framework Analysis was used to build thematic and explanatory accounts of the data. Twenty-nine participants took part. Main themes to emerge were as follows: the spouse was the most important provider of support; children were a relatively stable source of support, although many participants expressed reservations about worrying a child; relatives and friends typically provided social companionship and emotional support rather than on-going practical support. The only universally valued support function was the sense that someone was concerned and cared. Other valued functions were as follows: social companionship including everyday social "chit chat"; practical support provided sensitively; and, for many, sharing worries and sensitive encouragement. The manner and context in which support was provided was important: support was easiest to receive when it communicated concern, and was part of a reciprocal, caring relationship. As well as measuring supportive acts, researchers and clinicians should consider the manner and context of support. Implications for rehabilitation The manner in which support was provided mattered: support was easier to receive when it communicated concern. The spouse was the most important source of all support functions; children, relatives and friends were important providers of emotional and social companionship support. Researchers and clinicians should not only focus on what support is received, but also the context (e.g., contribution, reciprocity, quality of relationship) and manner (e.g., responsiveness, sensitivity) of the support.
Bradley, Eleanor; Green, Debra
A diagnosis of serious mental illness can impact on the whole family. Families informally provide significant amounts of care but are disproportionately at risk of carer burden when compared to those supporting people with other long-term conditions. Shared decision making (SDM) is an ethical model of health communication associated with positive health outcomes; however, there has been little research to evaluate how routinely family is invited to participate in SDM, or what this looks like in practice. This UK study aimed to better understand how the family caregivers of those diagnosed with SMI are currently involved in decision making, particularly decisions about treatment options including prescribed medication. Objectives were to Explore the extent to which family members wish to be involved in decisions about prescribed medication Determine how and when professionals engage family in these decisions Identify barriers and facilitators associated with the engagement of family in decisions about treatment. Open-ended questions were sent to professionals and family members to elicit written responses. Qualitative responses were analysed thematically. Themes included the definition of involvement and "rules of engagement." Staff members are gatekeepers for family involvement, and the process is not democratic. Family and staff ascribe practical, rather than recovery-oriented roles to family, with pre-occupation around notions of adherence. Staff members need support, training and education to apply SDM. Time to exchange information is vital but practically difficult. Negotiated teams, comprising of staff, service users, family, peers as applicable, with ascribed roles and responsibilities could support SDM. © 2017 The Authors Health Expectations Published by John Wiley & Sons Ltd.
Evans, Jenna M; Baker, G Ross
Health service organizations and professionals are under increasing pressure to work together to deliver integrated patient care. A common understanding of integration strategies may facilitate the delivery of integrated care across inter-organizational and inter-professional boundaries. This paper aims to build a framework for exploring and potentially aligning multiple stakeholder perspectives of systems integration. The authors draw from the literature on shared mental models, strategic management and change, framing, stakeholder management, and systems theory to develop a new construct, Mental Models of Integrated Care (MMIC), which consists of three types of mental models, i.e. integration-task, system-role, and integration-belief. The MMIC construct encompasses many of the known barriers and enablers to integrating care while also providing a comprehensive, theory-based framework of psychological factors that may influence inter-organizational and inter-professional relations. While the existing literature on integration focuses on optimizing structures and processes, the MMIC construct emphasizes the convergence and divergence of stakeholders' knowledge and beliefs, and how these underlying cognitions influence interactions (or lack thereof) across the continuum of care. MMIC may help to: explain what differentiates effective from ineffective integration initiatives; determine system readiness to integrate; diagnose integration problems; and develop interventions for enhancing integrative processes and ultimately the delivery of integrated care. Global interest and ongoing challenges in integrating care underline the need for research on the mental models that characterize the behaviors of actors within health systems; the proposed framework offers a starting point for applying a cognitive perspective to health systems integration.
This paper uses the emergent theories of chaos and complexity to explore the self-management supportive care of chronic obstructive pulmonary disease (COPD) patients within the evolving primary care setting. It discusses the concept of self-management support, the complexity of the primary care context and consultations, smoking cessation, and the impact of acute exacerbations and action planning. The author hopes that this paper will enable the acquisition of new insight and better understanding in this clinical area, as well as support meaningful learning and facilitate more thoughtful, effective and high quality patient-centred care within the context of primary care.
Suita, Tomoko; Kato, Rika; Fujita, Misao; Hidaka, Kumi; Iijima, Shohei
Counseling for patients with cancer by a certified nurse in palliative care began in April 2011 in Minoh City Hospital. Counseling was provided immediately after a patient was informed by the treating physician of a primary diagnosis of cancer, a metastatic recurrence, or a decision to terminate cancer therapy. We examined the patient's support system after the counseling ended. The number of patients receiving end-of-life support with home or hospital care rapidly increased from 118 prior to the program's beginning to 186. The number of patients counseled was comparable to the rapid increase in their number(n=68). New cases in the outpatient department comprised 59% of all patients, of which, 45% began supportive counseling, with 43%of them ultimately returning home. Of the new cases receiving counseling in the hospital, 34%eventually returned home after discharge, and the highest percentage of discharges were to a palliative care unit or hospice program (48%). The initiation of counseling in the outpatient department allowed us to provide sufficient time to make decisions about appropriate places for end-of-life care. Cooperation with the patients' physicians was necessary to provide counseling from the outpatient department. Our findings suggest the importance of sharing the patients' medical and social information among the staff when necessary.
Dehlendorf, Christine; Fitzpatrick, Judith; Steinauer, Jody; Swiader, Lawrence; Grumbach, Kevin; Hall, Cara; Kuppermann, Miriam
We developed and formatively evaluated a tablet-based decision support tool for use by women prior to a contraceptive counseling visit to help them engage in shared decision making regarding method selection. Drawing upon formative work around women's preferences for contraceptive counseling and conceptual understanding of health care decision making, we iteratively developed a storyboard and then digital prototypes, based on best practices for decision support tool development. Pilot testing using both quantitative and qualitative data and cognitive testing was conducted. We obtained feedback from patient and provider advisory groups throughout the development process. Ninety-six percent of women who used the tool in pilot testing reported that it helped them choose a method, and qualitative interviews indicated acceptability of the tool's content and presentation. Compared to the control group, women who used the tool demonstrated trends toward increased likelihood of complete satisfaction with their method. Participant responses to cognitive testing were used in tool refinement. Our decision support tool appears acceptable to women in the family planning setting. Formative evaluation of the tool supports its utility among patients making contraceptive decisions, which can be further evaluated in a randomized controlled trial. Copyright © 2017 Elsevier B.V. All rights reserved.
Coxeter, Peter; Del Mar, Chris B; McGregor, Leanne; Beller, Elaine M; Hoffmann, Tammy C
Shared decision making is an important component of patient-centred care. It is a set of communication and evidence-based practice skills that elicits patients' expectations, clarifies any misperceptions and discusses the best available evidence for benefits and harms of treatment. Acute respiratory infections (ARIs) are one of the most common reasons for consulting in primary care and obtaining prescriptions for antibiotics. However, antibiotics offer few benefits for ARIs, and their excessive use contributes to antibiotic resistance - an evolving public health crisis. Greater explicit consideration of the benefit-harm trade-off within shared decision making may reduce antibiotic prescribing for ARIs in primary care. To assess whether interventions that aim to facilitate shared decision making increase or reduce antibiotic prescribing for ARIs in primary care. We searched CENTRAL (2014, Issue 11), MEDLINE (1946 to November week 3, 2014), EMBASE (2010 to December 2014) and Web of Science (1985 to December 2014). We searched for other published, unpublished or ongoing trials by searching bibliographies of published articles, personal communication with key trial authors and content experts, and by searching trial registries at the National Institutes of Health and the World Health Organization. Randomised controlled trials (RCTs) (individual level or cluster-randomised), which evaluated the effectiveness of interventions that promote shared decision making (as the focus or a component of the intervention) about antibiotic prescribing for ARIs in primary care. Two review authors independently extracted and collected data. Antibiotic prescribing was the primary outcome, and secondary outcomes included clinically important adverse endpoints (e.g. re-consultations, hospital admissions, mortality) and process measures (e.g. patient satisfaction). We assessed the risk of bias of all included trials and the quality of evidence. We contacted trial authors to obtain missing
Qian, Yi; Hou, Zhiyuan; Wang, Wei; Zhang, Donglan; Yan, Fei
adopt a shared financial incentive system to support integrated care across providers in the future.
Nath, Chinmoy; Huh, Jina; Adupa, Abhishek Kalyan; Jonnalagadda, Siddhartha R
disseminate information, supportive evidence, resources for social support, and other ways to communicate. Online health communities can be used as important health care information resources for patients and caregivers. Our findings inform patients' health information-sharing activities. This information assists health care providers, informaticians, and online health information entrepreneurs and developers in helping patients and caregivers make informed choices.
Tarboton, D. G.; Idaszak, R.; Horsburgh, J. S.; Ames, D. P.; Goodall, J. L.; Couch, A.; Hooper, R. P.; Dash, P. K.; Stealey, M.; Yi, H.; Bandaragoda, C.; Castronova, A. M.
HydroShare is an online, collaboration system for sharing of hydrologic data, analytical tools, and models. It supports the sharing of and collaboration around "resources" which are defined by standardized content types for data formats and models commonly used in hydrology. With HydroShare you can: Share your data and models with colleagues; Manage who has access to the content that you share; Share, access, visualize and manipulate a broad set of hydrologic data types and models; Use the web services application programming interface (API) to program automated and client access; Publish data and models and obtain a citable digital object identifier (DOI); Aggregate your resources into collections; Discover and access data and models published by others; Use web apps to visualize, analyze and run models on data in HydroShare. This presentation will describe the functionality and architecture of HydroShare highlighting its use as a virtual environment supporting education and research. HydroShare has components that support: (1) resource storage, (2) resource exploration, and (3) web apps for actions on resources. The HydroShare data discovery, sharing and publishing functions as well as HydroShare web apps provide the capability to analyze data and execute models completely in the cloud (servers remote from the user) overcoming desktop platform limitations. The HydroShare GIS app provides a basic capability to visualize spatial data. The HydroShare JupyterHub Notebook app provides flexible and documentable execution of Python code snippets for analysis and modeling in a way that results can be shared among HydroShare users and groups to support research collaboration and education. We will discuss how these developments can be used to support different types of educational efforts in Hydrology where being completely web based is of value in an educational setting as students can all have access to the same functionality regardless of their computer.
Passfield, Juanine; Nielsen, Ilsa; Brebner, Neil; Johnstone, Cara
Objective Delegation and skill sharing are emerging service strategies for allied health (AH) professionals working in Queensland regional cancer care services. The aim of the present study was to describe the consistency between two services for the types and frequency of tasks provided and the agreement between teams in the decision to delegate or skill share clinical tasks, thereby determining the potential applicability to other services. Methods Datasets provided by two similar services were collated. Descriptive statistical analyses were used to assess the extent of agreement. Results In all, 214 tasks were identified as being undertaken by the services (92% agreement). Across the services, 70 tasks were identified as high frequency (equal to or more frequently than weekly) and 29 as not high frequency (46% agreement). Of the 68 tasks that were risk assessed, agreement was 66% for delegation and 60% for skill sharing, with high-frequency and intervention tasks more likely to be delegated. Conclusions Strong consistency was apparent for the clinical tasks undertaken by the two cancer care AH teams, with moderate agreement for the frequency of tasks performed. The proportion of tasks considered appropriate for skill sharing and/or delegation was similar, although variation at the task level was apparent. Further research is warranted to examine the range of factors that affect the decision to skill share or delegate. What is known about the topic? There is limited research evidence regarding the use of skill sharing and delegation service models for AH in cancer care services. In particular, the extent to which decisions about task safety and appropriateness for delegation or skill sharing can be generalised across services has not been investigated. What does this paper add? This study investigated the level of clinical task consistency between two similar AH cancer care teams in regional centres. It also examined the level of agreement with regard to
Gorbenko, Ksenia O.; Fraze, Taressa; Lewis, Valerie A.
INTRODUCTION Accountable care organizations (ACOs) are a value-based payment model in the United States rooted in holding groups of healthcare providers financially accountable for the quality and total cost of care of their attributed population. To succeed in reaching their quality and efficiency goals, ACOs implement a variety of care delivery changes, including workforce redesign. Patient support personnel (PSP)—non-physician staff such as care coordinators, community health workers, and others—are critical to restructuring care delivery. Little is known about how ACOs are redesigning their patient support personnel in terms of responsibilities, location, and evaluation. METHODS We conducted semi-structured one-hour interviews with 25 executives at 16 distinct ACOs. The interviews were recorded, transcribed, and coded for themes, using a qualitative coding and analysis process. RESULTS ACOs deployed PSP to perform four clusters of responsibilities: care provision, care coordination, logistical help with transportation, and social and emotional support. ACOs deployed these personnel strategically across settings (primary care, inpatient services, emergency department, home care and community) depending on their population needs. Most ACOs used personnel with the same level of training across settings. Few ACOs planned to conduct a comprehensive evaluation of their PSP to optimize their value. DISCUSSION ACO strategies in workforce redesign indicate a shift from a physician-centered to a team-based approach. Employing personnel with varying levels of clinical training to perform different tasks can help further optimize care delivery. More robust evaluation of the deployment of PSP and their performance is needed to demonstrate cost-saving benefits of workforce redesign. PMID:28217305
de Carvalho Leite Jose C
Full Text Available Abstract Background Needs-based resource allocation is fundamental to equitable care provision, which can meet the often-complex, fluctuating needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME. This has posed challenges both for those providing and those seeking support providers, in building shared understanding of the condition and of actions to address it. This qualitative study reports on needs for equity in health and social care expressed by adults living with CFS/ME. Methods The participants were 35 adults with CFS/ME in England, purposively selected to provide variation in clinical presentations, social backgrounds and illness experiences. Accounts of experienced needs and needs-related encounters with health and social services were obtained through a focus group (n = 6 and semi-structured interviews (n = 35. These were transcribed and needs related topics identified through data-led thematic analysis. Findings Participants emphasised needs for personalised, timely and sustained support to alleviate CFS/ME impacts and regain life control, in three thematic areas: (1 Illness symptoms, functional limitations and illness management; (2 practical support and social care; (3 financial support. Access of people with CFS/ME to support from health and social services was seen to be constrained by barriers stemming from social, cultural, organisational and professional norms and practices, further heightened for disadvantaged groups including some ethnic minorities. These reduced opportunities for their illness to be explained or associated functional limitations and social disadvantages to be addressed through social support. Participants sought more understanding of bio-psycho-social aspects of CFS/ME, of felt needs of people with CFS/ME and of human rights and disability rights, for providing person-centred, equitable care. Conclusions Changes in attitudes of health practitioners, policy makers and general public
de Carvalho Leite Jose C; de L Drachler Maria; Killett Anne; Kale Swati; Nacul Luis; McArthur Maggie; Hong Chia; O'Driscoll Lucy; Pheby Derek; Campion Peter; Lacerda Eliana; Poland Fiona
Abstract Background Needs-based resource allocation is fundamental to equitable care provision, which can meet the often-complex, fluctuating needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). This has posed challenges both for those providing and those seeking support providers, in building shared understanding of the condition and of actions to address it. This qualitative study reports on needs for equity in health and social care expressed by adults living w...
Vaala, Sarah E; Lee, Joyce M; Hood, Korey K; Mulvaney, Shelagh A
Sharing personal information about type 1 diabetes (T1D) can help adolescents obtain social support, enhance social learning, and improve self-care. Diabetes technologies, online communities, and health interventions increasingly feature data-sharing components. This study examines factors underlying adolescents' willingness to share personal T1D information with peers. Participants were 134 adolescents (12-17 years of age; 56% female) who completed an online survey regarding experiences helping others with T1D, perceived social resources, beliefs about the value of sharing information and helping others, and willingness to share T1D information. Hemoglobin A1c values were obtained from medical records. Adolescents were more willing to share how they accomplished T1D tasks than how often they completed them, and least willing to share glucose control status. In multivariate analyses, sharing/helping beliefs (β = 0.26, P value; β = -0.26, P personal health information. Glucose control moderated relationships such that adolescents with worse A1c values had stronger relationships between sharing/helping beliefs and willingness to share (β = 0.18, P personal health information, particularly if they have better diabetes health status and a stronger belief in the benefits of sharing. Social learning and social media components may improve intervention participation, engagement, and outcomes by boosting adolescents' beliefs about the benefits of sharing information and helping others. © The Author 2017. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For Permissions, please email: firstname.lastname@example.org
Reñones Crego, María de la Concepción; Fernández Pérez, Dolores; Vena Fernández, Carmen; Zamudio Sánchez, Antonio
Cancer treatment is a major burden for the patient and its family that requires an individualized management by healthcare professionals. Nurses are in charge of coordinating care and are the closest healthcare professionals to patient and family; however, in Spain, there are not standard protocols yet for the management of oncology patients. The Spanish Oncology Nursing Society developed between 2012 and 2014 the SHARE project, with the aim of establishing strategies to improve quality of life and nursing care in oncology patients. It was developed in 3 phases. First, a literature search and review was performed to identify nursing strategies, interventions and tools to improve cancer patients' care. At the second stage, these interventions were agreed within a group of oncology nursing experts; and at the third phase, a different group of experts in oncology care categorized the interventions to identify the ones with highest priority and most feasible to be implemented. As a result, 3 strategic actions were identified to improve nursing care during cancer treatment: To provide a named nurse to carry out the follow up process by attending to the clinic or telephonic consultation, develop therapeutic education with adapted protocols for each tumor type and treatment and ensure specific training for nurses on the management of the cancer patients. Strategic actions proposed in this paper aim to improve cancer patients' healthcare and quality of life through the development of advanced nursing roles based on a higher level of autonomy, situating nurses as care coordinators to assure an holistic care in oncology patients. Copyright © 2016 Elsevier España, S.L.U. All rights reserved.
Andersson, Stefan; Erlingsson, Christen; Magnusson, Lennart; Hanson, Elizabeth
Policy makers in Sweden and other European Member States pay increasing attention as to how best support working carers; carers juggling providing unpaid family care for older family members while performing paid work. Exploring perceived benefits and challenges with web-based information and communication technologies as a means of supporting working carers' in their caregiving role, this paper draws on findings from a qualitative study. The study aimed to describe working carers' experiences of having access to the web-based family care support network 'A good place' (AGP) provided by the municipality to support those caring for an older family member. Content analysis of interviews with nine working carers revealed three themes: A support hub, connections to peers, personnel and knowledge; Experiencing ICT support as relevant in changing life circumstances; and Upholding one's personal firewall. Findings indicate that the web-based family care support network AGP is an accessible, complementary means of support. Utilising support while balancing caregiving, work obligations and responsibilities was made easier with access to AGP; enabling working carers to access information, psychosocial support and learning opportunities. In particular, it provided channels for carers to share experiences with others, to be informed, and to gain insights into medical and care issues. This reinforced working carers' sense of competence, helping them meet caregiving demands and see positive aspects in their situation. Carers' low levels of digital skills and anxieties about using computer-based support were barriers to utilising web-based support and could lead to deprioritising of this support. However, to help carers overcome these barriers and to better match web-based support to working carers' preferences and situations, web-based support must be introduced in a timely manner and must more accurately meet each working carer's unique caregiving needs. © 2016 Nordic College
Hong, Matthew K.; Wilcox, Lauren; Machado, Daniel; Olson, Thomas A.; Simoneaux, Stephen F.
Adolescents with complex chronic illnesses, such as cancer and blood disorders, must partner with family and clinical caregivers to navigate risky procedures with life-altering implications, burdensome symptoms and lifelong treatments. Yet, there has been little investigation into how technology can support these partnerships. We conducted 38 in-depth interviews (15 with teenage adolescents with chronic forms of cancer and blood disorders, 15 with their parents, and eight with clinical caregivers) along with nine non-participant observations of clinical consultations to better understand common challenges and needs that could be supported through design. Participants faced challenges primarily concerning: 1) teens’ limited participation in their care, 2) communicating emotionally-sensitive information, and 3) managing physical and emotional responses. We draw on these findings to propose design goals for sociotechnical systems to support teens in partnering in their care, highlighting the need for design to support gradually evolving partnerships in care. PMID:28164178
Over 400,000 children are in foster care in the United States, and more than 100,000 of them are waiting to be adopted. Yet many will age out of foster care into adulthood without an adoptive family. Teens and young adults aging out of foster care, even those with preparation and training for the transition, often do not fare well in young adulthood. Many face challenges in areas of education, employment, homelessness, finances, the criminal justice system, and meeting health and mental healthcare needs. Research demonstrates what only makes sense: teens with tangible support from meaningful adult relationships fare better than those without. This article describes an innovative program that connects teens in foster care with supportive adults through social events that can lead to meaningful long-term teen-adult connections - including friendships, mentoring, and even, in some cases, adoption. Pediatric nurses, aware of the challenges these teens face adjusting to adulthood, can begin to explore referral and support options for such teens in their own locales using the resources herein.
Fuller, Shannon M; Koester, Kimberly A; Guinness, Ryan R; Steward, Wayne T
Shared decision-making (SDM) is considered best practice in health care. Prior studies have explored attitudes and barriers/facilitators to SDM, with few specific to HIV care. We interviewed 53 patients in HIV primary care clinics in California to understand the factors and situations that may promote or hinder engagement in SDM. Studies in other populations have found that patients' knowledge about their diseases and their trust in providers facilitated SDM. We found these features to be more nuanced for HIV. Perceptions of personal agency, knowledge about one's disease, and trust in provider were factors that could work for or against SDM. Overall, we found that participants described few experiences of SDM, especially among those with no comorbidities. Opportunities for SDM in routine HIV care (e.g., determining antiretroviral therapy) may arise infrequently because of treatment advances. These findings yield considerations for adapting SDM to fit the context of HIV care. Copyright © 2016 The Authors. Published by Elsevier Inc. All rights reserved.
Sheu, Leslie; Fung, Kelly; Mourad, Michelle; Ranji, Sumant; Wu, Ethel
Poor communication between hospitalists and outpatient physicians can contribute to adverse events after discharge. Electronic medical records (EMRs) shared by inpatient and outpatient clinicians offer primary care providers (PCPs) better access to information surrounding a patient's hospitalization. However, the PCP experience and subsequent expectations for discharge communication within a shared EMR are unknown. We surveyed PCPs 1 year after a shared EMR was implemented at our institution to assess PCP satisfaction with current discharge communication practices and identify areas for improvement. Seventy-five of 124 (60%) clinicians completed the survey. Although most PCPs reported receiving automated discharge notifications (71%), only 39% felt that notifications plus discharge summaries were adequate for safe transitions of care. PCPs expressed that complex hospitalizations necessitated additional communication via e-mail or telephone; only 31% reported receiving such communication. The content most important in additional communication included medication changes, follow-up actions, and active medical issues. Despite optimized access to information provided by a shared EMR, only 52% of PCPs were satisfied with current discharge communication. PCPs express a continued need for high-touch communication for safe transitions of care. Further standardization of discharge communication practices is necessary. © 2015 Society of Hospital Medicine.
Aromaa, S.; Leino, S.P.; Reyes-Lecuona, A.; Frangakis, N.; Berglund, J.; Bosch, T.; Rhijn, G. van; Granholm, G.
The manufacturing industry needs to adapt their product-services to meet customer requirements in today’s rapidly changing markets. This paper presents how technologies can support knowledge sharing and collaboration during product-service processes. This work was part of the European Union
Sinkkonen, Hanna-Maija; Kyttälä, Minna
This study investigated Finnish young people's experiences of supportive housing. Supportive housing is an after-care programme that should support the transition from foster care to independent adulthood. It is directed mainly at young people who have been taken into foster care by social workers. The sample consisted of 39 young people (23…
Latkin, Carl A; Buchanan, Amy S; Metsch, Lisa R; Knight, Kelly; Latka, Mary H; Mizuno, Yuko; Knowlton, Amy R
Among HIV-positive injection drug users (IDUs), we examined baseline predictors of lending needles and syringes and sharing cookers, cotton, and rinse water in the prior 3 months at follow-up. Participants were enrolled in Intervention for Seropositive Injectors-Research and Evaluation, a secondary prevention intervention for sexually active HIV-positive IDUs in 4 US cities during 2001-2005. The analyses involved 357 participants who reported injecting drugs in the prior 6 months at either the 6- or 12-month follow-up visit. About half (49%) reported at least 1 sharing episode. In adjusted analyses, peer norms supporting safer injection practices and having primary HIV medical care visits in the prior 6 months were associated with reporting no sharing of injection equipment. Higher levels of psychological distress were associated with a greater likelihood of reporting drug paraphernalia sharing. These findings suggest that intervention approaches for reducing HIV-seropositive IDUs' transmission of blood-borne infections should include peer-focused interventions to alter norms of drug paraphernalia sharing and promoting primary HIV care and mental health services.
Nielsen, Annegrethe; Yding, Annika; Skovsted, Katrine Brander
In recent years political focus has increasingly been on patient involvement in decisions in healthcare. One challenge in implementing the principles of shared decision making is to develop suitable communication practice in the clinical encounters between patients and healthcare providers....... A project where a group of midwives and nurses worked together in a serial of workshops training communication skills suitable for involving women in decisions in ante- and postnatal care was conducted in 2015. Communication skills training involved group analysis of videos of real consultations...... and a variety of roleplays and rehearsals of communication situations. Besides training communication skills the project aimed at documenting institutional practices obstructive to the purpose of sharing decisions....
Scotté, F; Hervé, C; Oudard, S; Bugat, M E; Bugat, R; Farsi, F; Namer, M; Tourani, J M; Tournigand, C; Yazbek, G; Richard, S; Krakowski, I
Supportive care in cancer (SCC) was further enhanced in the Second National Cancer Act decreed in December 2009. The aim of our study was to assess current SCC efficacy. The French speaking association for supportive care in cancer (AFSOS) conducted an observational study to evaluate practices, organisations and information given to patients. A specific 32 point questionnaire was sent to 1621 French physicians (MDs) caring for cancer patients. Three different organisations were evaluated: the individual MDs, the transversal team and its particular structure specialised in global patient care specifically developed at comprehensive cancer centres - CCC. During their disease, 68% of patients received SCC, which was more available during the palliative period (90%) than at the diagnosis (44%). Our results found that 71% of cancer departments had a specific interdisciplinary cross-team to provide SCC, particularly in CCC (62%; p=0.01) while 37% had specific inpatient units. A specific organisation dedicated to home care was greater in CCC than in public or private centres (69%, 45%, 20% respectively; p=0.01). Adverse event information was performed more by an oncologist than other specialists (p=0.01). Our results suggest that the specific SCC organisation could be a useful management tool to improve supportive care for cancer patients. Copyright © 2012 Elsevier Ltd. All rights reserved.
A problem shared is a problem halved; a very poignant proverb that forms the essence of this year's World Council of Enterostomal Therapists (WCET) UK conference in Coventry. Sharing experiences from practice is invalid if clinical practice is to grow and develop. It raises awareness, offering the opportunity to question and review practice. Sharing practice offers opportunities to enquiring minds.
Department of Veterans Affairs — The Primary Care Management Module (PCMM) was developed to assist VA facilities in implementing Primary Care. PCMM supports both Primary Care and non-Primary Care...
Worster, Brooke; Swartz, Kristine
With the emergence of telemedicine as a routine form of care in various venues, the opportunities to use technology to care for the most vulnerable, most ill cancer patients are extremely appealing. Increasingly, evidence supports early integration of palliative care with standard oncologic care, supported by recent NCCN guidelines to increase and improve access to palliative care. This review looks at the use of telemedicine to expand access to palliative care as well as provide better care for patients and families where travel is difficult, if not impossible. When telemedicine has been used, often in Europe, for palliative care, the results show improvements in symptom management, comfort with care as well as patient and family satisfaction. One barrier to use of telemedicine is the concerns with technology and technology-related complications in population that is often elderly, frail and not always comfortable with non-face-to-face physician care. There remain significant opportunities to explore this intersection of supportive care and telemedicine.
... page: //medlineplus.gov/ency/patientinstructions/000877.htm Shared decision making To use the sharing features on this page, ... treatment you both support. When to use Shared Decision Making Shared decision making is often used when you ...
Gage-Bouchard, Elizabeth A
Recent research has focused attention on the role of patients' and clinicians' cultural skills and values in generating inequalities in health care experiences. Yet, examination of how social structural factors shape people's abilities to build, refine, and leverage strategies for navigating the health care system have received less attention. In this paper I place focus on one such social structural factor, social support, and examine how social support operates as a flexible resource that helps people navigate the health care system. Using the case of families navigating pediatric cancer care this study combines in-depth interviews with parents of pediatric cancer patients (N = 80), direct observation of clinical interactions between families and physicians (N = 73), and in-depth interviews with pediatric oncologists (N = 8). Findings show that physicians assess parental visibility in the hospital, medical vigilance, and adherence to their child's treatment and use these judgments to shape clinical decision-making. Parents who had help from their personal networks had more agility in balancing competing demands, and this allowed parents to more effectively meet institutional expectations for appropriate parental involvement in the child's health care. In this way, social support served as a flexible resource for some families that allowed parents to more quickly adapt to the demands of caring for a child with cancer, foster productive interpersonal relationships with health care providers, and play a more active role in their child's health care. Copyright © 2017 Elsevier Ltd. All rights reserved.
Boussi Rahmouni, H; Solomonides, T; Casassa Mont, M; Shiu, S; Rahmouni, M
Clinical practitioners and medical researchers often have to share health data with other colleagues across Europe. Privacy compliance in this context is very important but challenging. Automated privacy guidelines are a practical way of increasing users' awareness of privacy obligations and help eliminating unintentional breaches of privacy. In this paper we present an ontology-plus-rules based approach to privacy decision support for the sharing of patient data across European platforms. We use ontologies to model the required domain and context information about data sharing and privacy requirements. In addition, we use a set of Semantic Web Rule Language rules to reason about legal privacy requirements that are applicable to a specific context of data disclosure. We make the complete set invocable through the use of a semantic web application acting as an interactive privacy guideline system can then invoke the full model in order to provide decision support. When asked, the system will generate privacy reports applicable to a specific case of data disclosure described by the user. Also reports showing guidelines per Member State may be obtained. The advantage of this approach lies in the expressiveness and extensibility of the modelling and inference languages adopted and the ability they confer to reason with complex requirements interpreted from high level regulations. However, the system cannot at this stage fully simulate the role of an ethics committee or review board.
Levin, Lia; Schwartz-Tayri, Talia
Partnerships between service users and social workers are complex in nature and can be driven by both personal and contextual circumstances. This study sought to explore the relationship between social workers' involvement in shared decision making with service users, their attitudes towards service users in poverty, moral standards and health and social care organizations' policies towards shared decision making. Based on the responses of 225 licensed social workers from health and social care agencies in the public, private and third sectors in Israel, path analysis was used to test a hypothesized model. Structural attributions for poverty contributed to attitudes towards people who live in poverty, which led to shared decision making. Also, organizational support in shared decision making, and professional moral identity, contributed to ethical behaviour which led to shared decision making. The results of this analysis revealed that shared decision making may be a scion of branched roots planted in the relationship between ethics, organizations and Stigma. © 2016 The Authors. Health Expectations Published by John Wiley & Sons Ltd.
Barbalios, N.; Ioannidou, I.; Tzionas, P.; Paraskeuopoulos, S.
This paper introduces a realistic 3D model supported virtual environment for environmental education, that highlights the importance of water resource sharing by focusing on the tragedy of the commons dilemma. The proposed virtual environment entails simulations that are controlled by a multi-agent simulation model of a real ecosystem consisting…
Eneanya, Nwamaka D; Goff, Sarah L; Martinez, Talaya; Gutierrez, Natalie; Klingensmith, Jamie; Griffith, John L; Garvey, Casey; Kitsen, Jenny; Germain, Michael J; Marr, Lisa; Berzoff, Joan; Unruh, Mark; Cohen, Lewis M
End-stage renal disease carries a prognosis similar to cancer yet only 20 % of end-stage renal disease patients are referred to hospice. Furthermore, conversations between dialysis team members and patients about end-of-life planning are uncommon. Lack of provider training about how to communicate prognostic data may contribute to the limited number of end-of-life care discussions that take place with this chronically ill population. In this study, we will test the Shared Decision-Making Renal Supportive Care communication intervention to systematically elicit patient and caretaker preferences for end-of-life care so that care concordant with patients' goals can be provided. This multi-center study will deploy an intervention to improve end-of-life communication for hemodialysis patients who are at high risk of death in the ensuing six months. The intervention will be carried out as a prospective cohort with a retrospective cohort serving as the comparison group. Patients will be recruited from 16 dialysis units associated with two large academic centers in Springfield, Massachusetts and Albuquerque, New Mexico. Critical input from patient advisory boards, a stakeholder panel, and initial qualitative analysis of patient and caretaker experiences with advance care planning have informed the communication intervention. Rigorous communication training for hemodialysis social workers and providers will ensure that standardized study procedures are performed at each dialysis unit. Nephrologists and social workers will communicate prognosis and provide advance care planning in face-to-face encounters with patients and families using a social work-centered algorithm. Study outcomes including frequency and timing of hospice referrals, patient and caretaker satisfaction, quality of end-of-life discussions, and quality of death will be assessed over an 18 month period. The Shared Decision-Making Renal Supportive Care Communication intervention intends to improve discussions
Cano, Isaac; Alonso, Albert; Hernandez, Carme; Burgos, Felip; Barberan-Garcia, Anael; Roldan, Jim; Roca, Josep
Extensive deployment and sustainability of integrated care services (ICS) constitute an unmet need to reduce the burden of chronic conditions. The European Union project NEXES (2008-2013) assessed the deployment of four ICS encompassing the spectrum of severity of chronic patients. The current study aims to (i) describe the open source Adaptive Case Management (ACM) system (Linkcare®) developed to support the deployment of ICS at the level of healthcare district; (ii) to evaluate its performance; and, (iii) to identify key challenges for regional deployment of ICS. We first defined a conceptual model for ICS management and execution composed of five main stages. We then specified an associated logical model considering the dynamic runtime of ACM. Finally, we implemented the four ICS as a physical model with an ICS editor to allow professionals (case managers) to play active roles in adapting the system to their needs. Instances of ICS were then run in Linkcare®. Four ICS provided a framework for evaluating the system: Wellness and Rehabilitation (W&R) (number of patients enrolled in the study (n)=173); Enhanced Care (EC) in frail chronic patients to prevent hospital admissions, (n=848); Home Hospitalization and Early Discharge (HH/ED) (n=2314); and, Support to remote diagnosis (Support) (n=7793). The method for assessment of telemedicine applications (MAST) was used for iterative evaluation. Linkcare® supports ACM with shared-care plans across healthcare tiers and offers integration with provider-specific electronic health records. Linkcare® successfully contributed to the deployment of the four ICS: W&R facilitated long-term sustainability of training effects (p<0.01) and active life style (p<0.03); EC showed significant positive outcomes (p<0.05); HH/ED reduced on average 5 in-hospital days per patient with a 30-d re-admission rate of 10%; and, Support, enhanced community-based quality forced spirometry testing (p<0.01). Key challenges for regional deployment
Postma, A; Van Leeuwen, EF; Gerritsen, EJA; Roord, JJ; De vries-Hospers, HG
The Dutch Childhood Leukemia Study Group celebrated its 20th anniversary by conducting a nationwide survey on supportive care for children with leukemia. Pediatricians were asked about daily practice and current perceptions with regard to supportive care. The results are discussed and compared to
Zuffianò, Antonio; Colasante, Tyler; Peplak, Joanna; Malti, Tina
We examined links between sharing, respect for moral others, and sympathy in an ethnically diverse sample of 7- and 15-year-olds (N = 146). Sharing was assessed through children's allocation of resources in the dictator game. Children reported their respect towards hypothetical characters performing moral acts. Sympathy was evaluated via caregiver and child reports. Respect and caregiver-reported sympathy interacted in predicting sharing: Higher levels of respect were associated with higher levels of sharing for children with low, but not medium or high, levels of sympathy. The motivational components of other-oriented respect may compensate for low levels of sympathetic concern in the promotion of sharing. © 2015 The British Psychological Society.
Duker, Leah I. Stein
Supportive care in oncology helps people cope with cancer and its psychological, physical, and emotional side effects. However, cancer survivors report dissatisfaction with supportive care and a need for more psychosocial and self-management services. Occupational therapy practitioners represent an integral part of the supportive care team because their scope of practice emphasizes function. Through a focus on function, practitioners address the full spectrum of physical and psychosocial care. Currently, conceptualizations of occupational therapy for cancer survivors often focus solely on physical interventions and, therefore, do not represent the unique involvement of the profession in supportive oncology care. We advocate for a focused framework for occupational therapy practitioners in oncology as experts in function and providers of both physical and psychosocial treatments. Barriers to a focus on function are identified, and strategies are suggested for expanding involvement for the profession in supportive oncology care. PMID:27295001
Steenbakkers, Anne; van der Steen, Steffie; Grietens, Hans
Sharing stories about the past and about being in care, can help adolescents placed in foster families to make meaning of their experiences and connect with their conversation partner. However, what obstacles and opportunities for sharing stories are experienced by foster youth has not been
Bardram, Jakob; Mogensen, Martin
Contemporary object-oriented programming seeks to enable distributed computing by accessing remote objects using blocking remote procedure calls. This technique, however, suffers from several drawbacks because it relies on the assumption of stable network connections and synchronous method...... invocations. In this paper we present an approach to support distributed programming, which rely on local object replicas keeping themselves synchronized using an underlying peer-to-peer infrastructure. We have termed our approach Peer-to-peer Distributed Shared Objects (PDSO). This PDSO approach has been...
Research data should be made readily available. A robust data-sharing plan, led by the principal investigator of the research project, requires considerable administrative and operational resources. Because external support for data sharing is minimal, principal investigators should consider engaging existing institutional information experts, such as librarians and information systems personnel, to participate in data-sharing efforts.
Shared care or nurse consultations as an alternative to rheumatologist follow-up for rheumatoid arthritis (RA) outpatients with stable low disease-activity RA: cost-effectiveness based on a 2-year randomized trial.
Sørensen, J; Primdahl, J; Horn, H C; Hørslev-Petersen, K
To compare the cost-effectiveness of three types of follow-up for outpatients with stable low-activity rheumatoid arthritis (RA). In total, 287 patients were randomized to either planned rheumatologist consultations, shared care without planned consultations, or planned nurse consultations. Effectiveness measures included disease activity (Disease Activity Score based on 28 joint counts and C-reactive protein, DAS28-CRP), functional status (Health Assessment Questionnaire, HAQ), and health-related quality of life (EuroQol EQ-5D). Cost measures included activities in outpatient clinics and general practice, prescription and non-prescription medicine, dietary supplements, other health-care resources, and complementary and alternative care. Measures of effectiveness and costs were collected by self-reported questionnaires at inclusion and after 12 and 24 months. Incremental cost-effectiveness rates (ICERs) were estimated in comparison with rheumatologist consultations. Changes in disease activity, functional status, and health-related quality of life were not statistically significantly different for the three groups, although the mean scores were better for the shared care and nurse care groups compared with the rheumatologist group. Shared care and nurse care were non-significantly less costly than rheumatologist care. As both shared care and nurse care were associated with slightly better EQ-5D improvements and lower costs, they dominated rheumatologist care. At EUR 10,000 per quality-adjusted life year (QALY) threshold, shared care and nurse care were cost-effective with more than 90% probability. Nurse care was cost-effective in comparison with shared care with 75% probability. Shared care and nurse care seem to cost less but provide broadly similar health outcomes compared with rheumatologist outpatient care. However, it is still uncertain whether nurse care and shared care are cost-effective in comparison with rheumatologist outpatient care.
Marker, Arwen M; Noser, Amy E; Clements, Mark A; Patton, Susana R
We examined how parent and youth responsibility for type 1 diabetes (T1D) care is related to adherence and glycemic outcomes, namely, glycemic variability and risk of glycemic excursions. One hundred thirty-five parent-youth dyads (10-16 years old; diagnosed with T1D for at least 6 months) participated in this study. Percent responsibility of T1D care attributed to the youth, parent, or shared was measured using the Diabetes Family Responsibility Questionnaire. We collected youth's hemoglobin A1c (HbA1c) and glucometer downloads to examine relationships between responsibility and HbA1c, frequency of blood glucose monitoring (self-monitoring blood glucose, SMBG), risk of glycemic excursions, and actual glycemic variability using bivariate correlations and path analysis. Participants reported shared responsibility for almost half of T1D self-care tasks. Bivariate correlations showed shared responsibility was associated with less variability, whereas parent responsibility was associated with greater glycemic variability and risk for glycemic excursions. Youth responsibility was associated with lower frequency of SMBG. The path analyses confirmed our correlational findings (pshypothesis that shared T1D responsibility is associated with better diabetes outcomes in youth. © The Author 2017. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: email@example.com
Yuen, Jacqueline K; Mehta, Sonal S; Roberts, Jordan E; Cooke, Joseph T; Reid, M Carrington
Effective communication is essential for shared decision making with families of critically ill patients in the intensive care unit (ICU), yet there is limited evidence on effective strategies to teach these skills. The study's objective was to pilot test an educational intervention to teach internal medicine interns skills in discussing goals of care and treatment decisions with families of critically ill patients using the shared decision making framework. The intervention consisted of a PowerPoint online module followed by a four-hour workshop implemented at a retreat for medicine interns training at an urban, academic medical center. Participants (N=33) completed post-intervention questionnaires that included self-assessed skills learned, an open-ended question on the most important learning points from the workshop, and retrospective pre- and post-workshop comfort level with ICU communication skills. Participants rated their satisfaction with the workshop. Twenty-nine interns (88%) completed the questionnaires. Important self-assessed communication skills learned reflect key components of shared decision making, which include assessing the family's understanding of the patient's condition (endorsed by 100%) and obtaining an understanding of the patient/family's perspectives, values, and goals (100%). Interns reported significant improvement in their comfort level with ICU communication skills (pre 3.26, post 3.73 on a five-point scale, p=0.004). Overall satisfaction with the intervention was high (mean 4.45 on a five-point scale). The findings suggest that a brief intervention designed to teach residents communication skills in conducting goals of care and treatment discussions in the ICU is feasible and can improve their comfort level with these conversations.
Sleight, Alix G; Duker, Leah I Stein
Supportive care in oncology helps people cope with cancer and its psychological, physical, and emotional side effects. However, cancer survivors report dissatisfaction with supportive care and a need for more psychosocial and self-management services. Occupational therapy practitioners represent an integral part of the supportive care team because their scope of practice emphasizes function. Through a focus on function, practitioners address the full spectrum of physical and psychosocial care. Currently, conceptualizations of occupational therapy for cancer survivors often focus solely on physical interventions and, therefore, do not represent the unique involvement of the profession in supportive oncology care. We advocate for a focused framework for occupational therapy practitioners in oncology as experts in function and providers of both physical and psychosocial treatments. Barriers to a focus on function are identified, and strategies are suggested for expanding involvement for the profession in supportive oncology care. Copyright © 2016 by the American Occupational Therapy Association, Inc.
making around medication are important issues in supporting self-care in mental health. Conclusions Service delivery components – e.g. peer support groups, personal planning – advocated in generic self-care policy have value when implemented in a mental health context. Support for self-care in mental health should focus on core, mental health specific qualities; issues of control, enabling staff-service user relationships and shared decision making. The broad empirical basis of our research indicates the wider relevance of our findings across mental health settings.
Nichols, B Nolan; Pohl, Kilian M
Accelerating insight into the relation between brain and behavior entails conducting small and large-scale research endeavors that lead to reproducible results. Consensus is emerging between funding agencies, publishers, and the research community that data sharing is a fundamental requirement to ensure all such endeavors foster data reuse and fuel reproducible discoveries. Funding agency and publisher mandates to share data are bolstered by a growing number of data sharing efforts that demonstrate how information technologies can enable meaningful data reuse. Neuroinformatics evaluates scientific needs and develops solutions to facilitate the use of data across the cognitive and neurosciences. For example, electronic data capture and management tools designed to facilitate human neurocognitive research can decrease the setup time of studies, improve quality control, and streamline the process of harmonizing, curating, and sharing data across data repositories. In this article we outline the advantages and disadvantages of adopting software applications that support these features by reviewing the tools available and then presenting two contrasting neuroimaging study scenarios in the context of conducting a cross-sectional and a multisite longitudinal study.
Haas, Karen S.
Many companies today consider employer-sponsored child care a viable solution to problems facing employees who are also parents. Companies can choose from many program options, each with particular benefits for employer and employees. This manual highlights what is presently happening in employer-supported child care, particularly the cost…
Dannielle E. Kelley
Full Text Available Most social support research has examined support from an individual patient perspective and does not model the broader social context of support felt by caregivers. Understanding how social support networks may complement healthcare services is critical, considering the aging population, as social support networks may be a valuable resource to offset some of the demands placed on the healthcare system. We sought to identify how caregivers' perceived organizational and interpersonal support from their social support network influences care-recipient health.We created a dyadic dataset of care-recipient and caregivers from the first two rounds of the National Health and Aging Trends survey (2011, 2012 and the first round of the associated National Study of Caregivers survey (2011. Using structural equation modeling, we explored how caregivers' perceived social support is associated with caregiver confidence to provide care, and is associated with care-recipient health outcomes at two time points. All data were analyzed in 2016.Social engagement with members from caregivers' social support networks was positively associated with caregiver confidence, and social engagement and confidence were positively associated with care-recipient health at time 1. Social engagement positively predicted patient health at time 2 controlling for time 1. Conversely, use of organizational support negatively predicted care-recipient health at time 2.Care-recipients experience better health outcomes when caregivers are able to be more engaged with members of their social support network. Keywords: Informal caregiving, Social support, Social support network, Patient-caregiver dyads
Ranse, Kristen; Bloomer, Melissa; Coombs, Maureen; Endacott, Ruth
A core component of family-centred nursing care during the provision of end-of-life care in intensive care settings is information sharing with families. Yet little is known about information provided in these circumstances. To identify information most frequently given by critical care nurses to families in preparation for and during withdrawal of life-sustaining treatment. An online cross-sectional survey. During May 2015, critical care nurses in Australia and New Zealand were invited to complete the Preparing Families for Treatment Withdrawal questionnaire. Data analysis included descriptive statistics to identify areas of information most and least frequently shared with families. Cross tabulations with demographic data were used to explore any associations in the data. From the responses of 159 critical care nurses, information related to the emotional care and support of the family was most frequently provided to families in preparation for and during withdrawal of life-sustaining treatment. Variation was noted in the frequency of provision of information across body systems and their associated physical changes during the dying process. Significant associations (p<0.05) were identified between the variables gender, nursing experience and critical care experiences and some of the information items most and least frequently provided. The provision of information during end-of-life care reflects a family-centred care approach by critical care nurses with information pertaining to emotional care and support of the family paramount. The findings of this study provide a useful framework for the development of interventions to improve practice and support nurses in communicating with families at this time. Copyright © 2016 Australian College of Critical Care Nurses Ltd. Published by Elsevier Ltd. All rights reserved.
Rosendal, H.; Beekum, W.T. van; Nijhof, P.; Witte, L.P. de; Schrijvers, A.J.P.
Objectives: To assess whether shared care for patients undergoing total hip replacement delivers better outcomes compared to care as usual. Design: Prospective, observational cohort study. Setting: Two regions in the Netherlands where different organisational health care models have been
Full Text Available EAG Joosten1,2, GH de Weert3, T Sensky4, CPF van der Staak5, CAJ de Jong1,21Novadic-Kentron, Network for Addiction Treatment Services, Vught, the Netherlands; 2Nijmegen Institute for Scientist-Practitioners in Addiction (NISPA, Nijmegen, the Netherlands; 3Julius Center for Health Sciences and Primary Health Care, UMC Utrecht, Utrecht, the Netherlands; 4Department of Psychological Medicine, Imperial College London, London, United Kingdom; 5Academic Centre for Social Sciences, Radboud University Nijmegen, Nijmegen, the NetherlandsBackground: In recent decades, shared decision-making (SDM models have been developed to increase patient involvement in treatment decisions. The purpose of this study was to examine the effect of a shared decision-making intervention (SDMI for substance-dependent patients on patients’ and clinicians’ perceptions of therapeutic alliance.Methods: Clinicians were randomly assigned to SDMI or usual procedures to reach a treatment agreement. SDMI is a structured, manualized, 5-session procedure to facilitate treatment agreement and consists of five standardized sessions.Results: Patients’ perceptions of the therapeutic alliance were very favorable at start of treatment, and no differences were found between intervention groups. Clinicians’ scores on perceived helpfulness and on the overall therapeutic alliance were higher in the SDMI group than in the controls, after 8 weeks of treatment and at the end of treatment.Conclusion: The present study has shown that a specific intervention to enhance shared decision-making results in favorable changes in clinicians’ perceptions of the therapeutic alliance.Keywords: therapeutic alliance, helping alliance, shared decision-making, addiction, substance-dependence
Stephens, Kari A; Lin, Ching-Ping; Baldwin, Laura-Mae; Echo-Hawk, Abigail; Keppel, Gina A; Buchwald, Dedra; Whitener, Ron J; Korngiebel, Diane M; Berg, Alfred O; Black, Robert A; Tarczy-Hornoch, Peter
The University of Washington Institute of Translational Health Sciences is engaged in a project, LC Data QUEST, building data sharing capacity in primary care practices serving rural and tribal populations in the Washington, Wyoming, Alaska, Montana, Idaho region to build research infrastructure. We report on the iterative process of developing the technical architecture for semantically aligning electronic health data in primary care settings across our pilot sites and tools that will facilitate linkages between the research and practice communities. Our architecture emphasizes sustainable technical solutions for addressing data extraction, alignment, quality, and metadata management. The architecture provides immediate benefits to participating partners via a clinical decision support tool and data querying functionality to support local quality improvement efforts. The FInDiT tool catalogues type, quantity, and quality of the data that are available across the LC Data QUEST data sharing architecture. These tools facilitate the bi-directional process of translational research.
O'Hare, Daniel G
The possibility of medical-moral controversy in contemporary health care delivery is occasioned by the interfacing of expanding technology with both professional and personal value systems, frequent and significant knowledge deficits on the part of health care consumers, and increased circumspection of and economic constraints experienced by health care providers. Particularly in an era of increasing regulatory mandates and the frequent and lamentable decrease in the availability of human, natural, and institutional resources, an understanding of the function of ethical analysis is indigenous to care, which is simultaneously medically appropriate and morally indicated. But while a familiarity with and an appreciation of the potential contribution of ethical reasoning is essential in all health care delivery, it assumes critical importance in supportive care. In that venue, where the rigors and demands of aggressively therapeutic interventions have ceased and the goal and the demeanor of care have shifted to the palliative mode, heightened attention to the principles of medical ethics is necessary for the balancing of rights and responsibilities for health care consumers and providers alike. This issue ultimately can be singularly salient in providing care that is patient centered and directed. Individuals acting as moral agents, suggesting what "ought" to be done in a given situation, either for themselves or as they are involved in rendering or supporting decisions proffered for or by other moral agents, particularly those in extremis, those in the throes of terminal illness following the collapse of the curative mode, need recourse to principles to facilitate their reasoning. Although the employment of each principle of medical ethics offers guidelines for reflection on the most comprehensive and appropriate care, it is attention to autonomy, informed consent, and beneficence that promotes the most effective supportive care. For even as the question of medical
Delichatsios, Helen K; Hauser, Michelle E; Burgess, Jonathan D; Eisenberg, David M
Diseases linked to obesity such as cardiovascular disease, diabetes, degenerative joint disease, gastroesophageal reflux, and sleep apnea constitute a large portion of primary care visits. Patients with these conditions often lack knowledge, skills, and support needed to maintain health. Shared medical appointments (SMAs) that include culinary skills and nutrition education offer a novel, cost-effective way to address these diseases in primary care. Adult patients in a primary care practice at a large academic hospital in Boston, Massachusetts, who had at least 1 cardiovascular risk factor were invited to participate in SMAs that included cooking demonstrations and teaching about nutrition in addition to medical management of their conditions. Sessions were conducted by a physician and an assistant in a conference room of a traditional primary care practice as part of a pilot feasibility project. Seventy patients, contributing a total of 156 patient visits, attended 17 nutrition-focused SMAs over a 4-year period. Patients were surveyed after each visit and indicated that they enjoyed the SMAs, would consider alternating SMAs with traditional one-on-one visits, and would recommend SMAs to others. Half would pay out of pocket or a higher copay to attend SMAs. Financially, the practice broke even compared with traditional one-onone office visits. In this feasibility study, chronic disease SMAs conducted with a culinary/nutrition focus were feasible, cost-effective, and well received by patients. Follow-up studies are needed to evaluate short- and long-term outcomes of this SMA model on obesity-related diseases.
Stacey, Gemma; Felton, Anne; Morgan, Alastair; Stickley, Theo; Willis, Martin; Diamond, Bob; Houghton, Philip; Johnson, Beverley; Dumenya, John
Shared decision-making (SDM) is a high priority in healthcare policy and is complementary to the recovery philosophy in mental health care. This agenda has been operationalised within the Values-Based Practice (VBP) framework, which offers a theoretical and practical model to promote democratic interprofessional approaches to decision-making. However, these are limited by a lack of recognition of the implications of power implicit within the mental health system. This study considers issues of power within the context of decision-making and examines to what extent decisions about patients' care on acute in-patient wards are perceived to be shared. Focus groups were conducted with 46 mental health professionals, service users, and carers. The data were analysed using the framework of critical narrative analysis (CNA). The findings of the study suggested each group constructed different identity positions, which placed them as inside or outside of the decision-making process. This reflected their view of themselves as best placed to influence a decision on behalf of the service user. In conclusion, the discourse of VBP and SDM needs to take account of how differentials of power and the positioning of speakers affect the context in which decisions take place.
Sandtorv, Lisbeth B; Haugland, Siren; Elgen, Irene
Prenatal exposure to substances, including alcohol, opiates, and a number of illicit drugs, may have a negative impact on fetal development. Studies have shown that substance exposure can influence a child's neurodevelopment and the need for care and supportive measures. In this study, we aimed to investigate the care status and the level of supportive measures in school-aged children prenatally exposed to alcohol and other substances. This study included children aged between 6 and 14 years who were referred to Haukeland University Hospital in Norway with developmental impairment and a history of prenatal substance exposure. Participants were classified according to their main prenatal exposure to either alcohol or other substances. Information on care status and supportive measures was obtained from medical records and participants' caregivers. We also compared the use of supportive measures for children placed into foster care before and after 1 year of age. A total of 111 (87% of 128 referrals) eligible children participated in the study. Of these 111 children, 96 (86%) were in foster care, of whom 29 (30%) were placed into foster care during their first year of life and 83 out of 90 (92%) had supportive measures, including reinforced foster care and school or social support. A high proportion of the sample lived in foster care and received supportive measures. Findings may reflect an increased need of care and support in school-aged children with prenatal substance exposure, highlighting the importance of awareness among caregivers and public agencies.
Kelley, Dannielle E; Lewis, Megan A; Southwell, Brian G
Most social support research has examined support from an individual patient perspective and does not model the broader social context of support felt by caregivers. Understanding how social support networks may complement healthcare services is critical, considering the aging population, as social support networks may be a valuable resource to offset some of the demands placed on the healthcare system. We sought to identify how caregivers' perceived organizational and interpersonal support from their social support network influences care-recipient health. We created a dyadic dataset of care-recipient and caregivers from the first two rounds of the National Health and Aging Trends survey (2011, 2012) and the first round of the associated National Study of Caregivers survey (2011). Using structural equation modeling, we explored how caregivers' perceived social support is associated with caregiver confidence to provide care, and is associated with care-recipient health outcomes at two time points. All data were analyzed in 2016. Social engagement with members from caregivers' social support networks was positively associated with caregiver confidence, and social engagement and confidence were positively associated with care-recipient health at time 1. Social engagement positively predicted patient health at time 2 controlling for time 1. Conversely, use of organizational support negatively predicted care-recipient health at time 2. Care-recipients experience better health outcomes when caregivers are able to be more engaged with members of their social support network.
Shepherd, H L; Tattersall, M H N; Butow, P N
Most cancer patients in westernised countries now want all information about their situation, good or bad, and many wish to be involved in decision-making. The attitudes to and use of shared decision-making (SDM) by cancer doctors is not well known. Australian cancer clinicians treating breast, colorectal, gynaecological, haematological, or urological cancer were surveyed to identify their usual approach to decision-making and their comfort with different decision-making styles when discussing treatment with patients. A response rate of 59% resulted in 624 complete surveys, which explored usual practice in discussing participation in decision-making, providing information, and perception of the role patients want to play. Univariate and multivariate analyses were performed to identify predictors of use of SDM. Most cancer doctors (62.4%) reported using SDM and being most comfortable with this approach. Differences were apparent between reported high comfort with SDM and less frequent usual practice. Multivariate analysis showed that specialisation in breast or urological cancers compared to other cancers (AOR 3.02), high caseload of new patients per month (AOR 2.81) and female gender (AOR 1.87) were each independently associated with increased likelihood of use of SDM. Barriers exist to the application of SDM by doctors according to clinical situation and clinician characteristics.
Tomlinson, Deborah; Bartels, Ute; Gammon, Janet; Hinds, Pamela S; Volpe, Jocelyne; Bouffet, Eric; Regier, Dean A; Baruchel, Sylvain; Greenberg, Mark; Barrera, Maru; Llewellyn-Thomas, Hilary; Sung, Lillian
The choice between palliative chemotherapy (defined as the use of cytotoxic medications delivered intravenously for the purpose of our study) and supportive care alone is one of the most difficult decisions in pediatric oncology, yet little is known about the preferences of parents and health care professionals. We compared the strength of these preferences by considering children's quality of life and survival time as key attributes. In addition, we identified factors associated with the reported preferences. We included parents of children whose cancer had no reasonable chance of being cured and health care professionals in pediatric oncology as participants in our study. We administered separate interviews to parents and to health care professionals. Visual analogue scales were shown to respondents to illustrate the anticipated level of the child's quality of life, the expected duration of survival and the probability of cure (shown only to health care professionals). Respondents were then asked which treatment option they would favour given these baseline attributes. In addition, respondents reported what factors might affect such a decision and ranked all factors identified in order of importance. The primary measure was the desirability score for supportive care alone relative to palliative chemotherapy, as obtained using the threshold technique. A total of 77 parents and 128 health care professionals participated in our study. Important factors influencing the decision between therapeutic options were child quality-of-life and survival time among both parents and health care professionals. Hope was particularly important to parents. Parents significantly favoured chemotherapy (42/77, 54.5%) compared with health care professionals (20/128, 15.6%; p parents' desire for supportive care; for health care professionals, the opinions of parents and children were significant factors influencing this decision. Compared with health care professionals, parents more
León, Felipe; Zahavi, Dan
The chapter explores the topic of experiential sharing by drawing on the early contributions of the phenomenologists Alfred Schutz and Gerda Walther. It is argued that both Schutz and Walther support, from complementary perspectives, an approach to experiential sharing that has tended to be overl......The chapter explores the topic of experiential sharing by drawing on the early contributions of the phenomenologists Alfred Schutz and Gerda Walther. It is argued that both Schutz and Walther support, from complementary perspectives, an approach to experiential sharing that has tended...
Pelentsov, Lemuel J; Laws, Thomas A; Esterman, Adrian J
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.
Conclusions The level of integration in the Finnish social welfare and healthcare system is high and seems to be increasing, especially in health centres. Within one year a client uses many kinds of inpatient services. This may at best represent a functioning system of care pathways and at worst mean overlapping work and lack of coordination. This information is of great importance to senior officers in care pathway planning.
Sjögren, Karin; Lindkvist, Marie; Sandman, Per-Olof; Zingmark, Karin; Edvardsson, David
Few studies have empirically investigated factors that define residential aged care units that are perceived as being highly person-centred. The purpose of this study was to explore factors characterising residential aged care units perceived as being highly person-centred, with a focus on organisational and environmental variables, as well as residents' and staff' characteristics. A cross-sectional design was used. Residents ( n = 1460) and staff ( n = 1213) data from 151 residential care units were collected, as well as data relating to characteristics of the organisation and environment, and data measuring degree of person-centred care. Participating staff provided self-reported data and conducted proxy ratings on residents . Descriptive and comparative statistics, independent samples t-test, Chi 2 test, Eta Squared and Phi coefficient were used to analyse data. Highly person-centred residential aged care units were characterized by having a shared philosophy of care, a satisfactory leadership, interdisciplinary collaboration and social support from colleagues and leaders, a dementia-friendly physical environment, staff having time to spend with residents, and a smaller unit size. Residential aged care units with higher levels of person-centred care had a higher proportion of staff with continuing education in dementia care, and a higher proportion of staff receiving regular supervision, compared to units with lower levels of person-centred care. It is important to target organisational and environmental factors, such as a shared philosophy of care, staff use of time, the physical environment, interdisciplinary support, and support from leaders and colleagues, to improve person-centred care in residential care units. Managers and leaders seeking to facilitate person-centred care in daily practice need to consider their own role in supporting, encouraging, and supervising staff.
A frailty paradigm would be useful in primary care to identify older people at risk, but appropriate metrics at that level are lacking. We created and validated a simple instrument for frailty screening in Europeans aged ≥50. Our study is based on the first wave of the Survey of Health, Ageing and Retirement in Europe (SHARE, http:\\/\\/www.share-project.org), a large population-based survey conducted in 2004-2005 in twelve European countries.
Stutts, Amy; Schloemann, Johanna
As medical knowledge and technology continue to increase, so will types of life-sustaining support as well as the public's expectations for use of this support with positive outcomes. Health care professionals will continue to be challenged by the issues surrounding the appropriate use of life-sustaining support and the issues it raises. This is especially apparent in the NICU. When parents' belief systems challenge the health care team's ethical commitment to beneficence and nonmaleficence, a shared decision-making model based on mutual understanding of and respect for different viewpoints can redirect the focus onto the baby's best interest. This article addresses three questions: 1. How do nonmaleficence, beneficence, and concern about quality of life guide the use of life-sustaining support? 2. To what extent should parental autonomy and spirituality influence treatment decisions? 3. What efforts can the health care team make to support the family?
Jones, Barbara L; Contro, Nancy; Koch, Kendra D
Pediatric palliative care physicians have an ethical duty to care for the families of children with life-threatening conditions through their illness and bereavement. This duty is predicated on 2 important factors: (1) best interest of the child and (2) nonabandonment. Children exist in the context of a family and therefore excellent care for the child must include attention to the needs of the family, including siblings. The principle of nonabandonment is an important one in pediatric palliative care, as many families report being well cared for during their child's treatment, but feel as if the physicians and team members suddenly disappear after the death of the child. Family-centered care requires frequent, kind, and accurate communication with parents that leads to shared decision-making during treatment, care of parents and siblings during end-of-life, and assistance to the family in bereavement after death. Despite the challenges to this comprehensive care, physicians can support and be supported by their transdisciplinary palliative care team members in providing compassionate, ethical, and holistic care to the entire family when a child is ill.
Vecchio, N; Radford, K; Fitzgerald, J A; Comans, T; Harris, P; Harris, N
To identify feasible models of intergenerational care programmes, that is, care of children and older people in a shared setting, to determine consumer preferences and willingness to pay. Feasible models were constructed in extensive consultations with a panel of experts using a Delphi technique (n = 23) and were considered based on their practical implementation within an Australian setting. This informed a survey tool that captured the preferences and willingness to pay for these models by potential consumers, when compared to the status quo. Information collected from the surveys (n = 816) was analysed using regression analysis to identify fundamental drivers of preferences and the prices consumers were willing to pay for intergenerational care programmes. The shared campus and visiting models were identified as feasible intergenerational care models. Key attributes of these models included respite day care; a common educational pedagogy across generations; screening; monitoring; and evaluation of participant outcomes. Although parents were more likely to take up intergenerational care compared to the status quo, adult carers reported a higher willingness to pay for these services. Educational attainment also influenced the likely uptake of intergenerational care. The results of this study show that there is demand for the shared campus and the visiting campus models among the Australian community. The findings support moves towards consumer-centric models of care, in line with national and international best practice. This consumer-centric approach is encapsulated in the intergenerational care model and enables greater choice of care to match different consumer demands.
Langer, David A; Jensen-Doss, Amanda
The shared decision-making (SDM) model is one in which providers and consumers of health care come together as collaborators in determining the course of care. The model is especially relevant to youth mental health care, when planning a treatment frequently entails coordinating both youth and parent perspectives, preferences, and goals. The present article first provides the historical context of the SDM model and the rationale for increasing our field's use of SDM when planning psychosocial treatments for youth and families. Having established the potential utility of SDM, the article then discusses how to apply the SDM model to treatment planning for youth psychotherapy, proposing a set of steps consistent with the model and considerations when conducting SDM with youth and families.
van de Wetering, Marianne D.; Schouten-van Meeteren, Netteke Y. N.
In developed countries the survival rate of children with cancer exceeds 75%. Optimal supportive care is necessary to deliver the burdensome treatment protocols. As the intensity of primary treatment has escalated, so have the side effects like myelosuppression and infection. Children who receive
King, Jaime; Moulton, Benjamin
In 2007 Washington State became the first state to enact legislation encouraging the use of shared decision making and decision aids to address deficiencies in the informed-consent process. Group Health volunteered to fulfill a legislated mandate to study the costs and benefits of integrating these shared decision-making processes into clinical practice across a range of conditions for which multiple treatment options are available. The Group Health Demonstration Project, conducted during 2009-11, yielded five key lessons for successful implementation, including the synergy between efforts to reduce practice variation and increase shared decision making; the need to support modifications in practice with changes in physician training and culture; and the value of identifying best implementation methods through constant evaluation and iterative improvement. These lessons, and the legislated provisions that supported successful implementation, can guide other states and health care institutions moving toward informed patient choice as the standard of care for medical decision making.
Kiley Wei-Jen Loh
Full Text Available Despite being a relatively young nation, Singapore has established itself as a leading multifaceted medical hub, both regionally and globally. Although Singapore continues to pursue excellence in oncology care, cancer supportive care and survivorship care remain in the infancy stage. In an effort to advance this important aspect of oncology care in Singapore, the first cancer supportive and survivorship care forum was held in December 2016, involving 74 oncology practitioners. The primary goals of this forum were to raise awareness of the importance of cancer supportive and survivorship care and to provide a platform for oncology practitioners of diverse backgrounds to converge and address the challenges associated with the delivery of cancer supportive and survivorship care in Singapore. Key challenges identified during this forum included, but were not limited to, care fragmentation in an oncologist-centric model of care, poor integration of allied health and rehabilitation services, passive engagement of community partners, lack of specialized skill sets and knowledge in supportive and survivorship care, and patient-related barriers such as poor health literacy. The survivorship care model commonly used in Singapore places an imbalanced emphasis on surveillance for cancer recurrence and second primary cancers, with little attention given to the supportive and survivorship needs of the survivors. In summary, these challenges set the stage for the development and use of a more survivor-centric model, one that focuses not only on cancer surveillance, but also on the broad and unique physical and psychosocial needs of survivors of cancer in Singapore.
Altobelli, Laura C
One of the keys to improving health globally is promoting mothers' adoption of healthy home practices for improved nutrition and illness prevention in the first 1000 days of life from conception. Customarily, mothers are taught health messages which, even if simplified, are hard to remember. The challenge is how to promote learning and behavior change of mothers more effectively in low-resource settings where access to health information is poor, educational levels are low, and traditional beliefs are strong. In addressing that challenge, a new learning/teaching method called "Sharing Histories" is in development to improve the performance of female community health workers (CHWs) in promoting mothers' behaviors for maternal, neonatal and child health (MNCH). This method builds self-confidence and empowerment of CHWs in learning sessions that are built on guided sharing of their own memories of childbearing and child care. CHWs can later share histories with the mother, building her trust and empowerment to change. For professional primary health care staff who are not educators, Sharing Histories is simple to learn and use so that the method can be easily incorporated into government health systems and ongoing CHW programs. I present here the Sharing Histories method, describe how it differs from other social and behavior change methods, and discuss selected literature from psychology, communications, and neuroscience that helps to explain how and why this method works as a transformative tool to engage, teach, transform, and empower CHWs to be more effective change agents with other mothers in their communities, thereby contributing to the attainment of the Sustainable Development Goals.
Full Text Available An important incentive for scientists and researchers is the recognition and renown given to them in citations of their work. While citation rules are well developed for the use of papers published by others, very little rules are available for the citation of data made available by others. Increasingly, citation of the source of data is also requested in the context of socially relevant topics, such as climate change and its potential impacts. Providing means for data citation would be a strong incentive for data sharing. Georeferenced data are crucial for addressing many of the burning societal problems and to support related interdisciplinary research. The lack of a widely accepted method for giving credit to those who make their data freely available and for tracking the use of data throughout their life-cycle hampers data sharing. Furthermore, only clear and transparent data citation allows other scientists to obtain the identical data to replicate findings or for further research.
Coluccio, M; Havlick, K
Mergers of new health care entities require visionary leadership in forming effective partnerships. Shared leadership was one key ingredient in blending two major health care competitors in the Northwest. Building a successful foundation for shared leadership required formation of a common vision, definition of core values, and establishment of guiding principles. Honoring respective cultures, recognizing achievements, and inviting participation led to the design of the shared leadership model focused on the primary objective for the merger: Enhancing health care services to the community.
Nicholson, Caroline; Morrow, Elizabeth M; Hicks, Allan; Fitzpatrick, Joanne
Growing numbers of older people living with frailty and chronic health conditions are being referred to hospitals with acute care needs. Supportive care is a potentially highly relevant and clinically important approach which could bridge the practice gap between curative models of care and palliative care. However, future interventions need to be informed and underpinned by existing knowledge of supportive care. To identify and build upon existing theories and evidence about supportive care, specifically in relation to the hospital care of older people with frailty, to inform future interventions and their evaluation. An integrative review was used to identify and integrate theory and evidence. Electronic databases (Cochrane Medline, EMBASE and CIHAHL) were searched using the key term 'supportive care'. Screening identified studies employing qualitative and/or quantitative methods published between January 1990 and December 2015. Citation searches, reference checking and searches of the grey literature were also undertaken. Literature searches identified 2733 articles. After screening, and applying eligibility criteria based on relevance to the research question, studies were subject to methodological quality appraisal. Findings from included articles (n=52) were integrated using synthesis of themes. Relevant evidence was identified across different research literatures, on clinical conditions and contexts. Seven distinct themes of the synthesis were identified, these were: Ensuring fundamental aspects of care are met, Communicating and connecting with the patient, Carer and family engagement, Building up a picture of the person and their circumstances, Decisions and advice about best care for the person, Enabling self-help and connection to wider support, and Supporting patients through transitions in care. A tentative integrative model of supportive care for frail older people is developed from the findings. The findings and model developed here will inform
Brooks, Laura Anne; Manias, Elizabeth; Nicholson, Patricia
Clinicians in the intensive care unit commonly face decisions involving withholding or withdrawing life-sustaining therapy, which present many clinical and ethical challenges. Communication and shared decision-making are key aspects relating to the transition from active treatment to end-of-life care. To explore the experiences and perspectives of nurses and physicians when initiating end-of-life care in the intensive care unit. The study was conducted in a 24-bed intensive care unit in Melbourne, Australia. An interpretative, qualitative inquiry was used, with focus groups as the data collection method. Intensive care nurses and physicians were recruited to participate in a discipline-specific focus group. Focus group discussions were audio-recorded, transcribed, and subjected to thematic data analysis. Five focus groups were conducted; 17 nurses and 11 physicians participated. The key aspects discussed included communication and shared decision-making. Themes related to communication included the timing of end-of-life care discussions and conducting difficult conversations. Implementation and multidisciplinary acceptance of end-of-life care plans and collaborative decisions involving patients and families were themes related to shared decision-making. Effective communication and decision-making practices regarding initiating end-of-life care in the intensive care unit are important. Multidisciplinary implementation and acceptance of end-of-life care plans in the intensive care unit need improvement. Clear organizational processes that support the introduction of nurse and physician end-of-life care leaders are essential to optimize outcomes for patients, family members, and clinicians. ©2017 American Association of Critical-Care Nurses.
The University of Florida Training Reactor serves as a host institution to support various educational institutions which are located primarily within the state of Florida. All users and uses were carefully screened to assure the usage was for educational institutions eligible for participation in the Reactor Sharing Program. Three tables are included that provide basic information about the 1992--1993 program and utilization of the reactor facilities by user institutions
Hack, Thomas F; Crooks, Dauna; Plohman, James; Kepron, Emma
The purpose of this study was to conduct a historical review of psycho-oncology and supportive care research in Canada using citation analysis and to review the clinical impact of the research conducted by the most highly cited researchers. The lifetime journal publication records of 109 psycho-oncology and supportive care researchers in Canada were subject to citation analysis using the Scopus database, based on citations since 1996 of articles deemed relevant to psychosocial oncology and supportive care, excluding self-citations. Three primary types of analysis were performed for each individual: the number of citations for each journal publication, a summative citation count of all published articles, and the Scopus h-index. The top 20 psycho-oncology/supportive care researchers for each of five citation categories are presented: the number of citations for all publications; the number of citations for first-authored publications; the most highly cited first-authored publications; the Scopus h-index for all publications; and the Scopus h-index for first-authored publications. The three most highly cited Canadian psycho-oncology researchers are Dr. Kerry Courneya (University of Alberta), Dr. Lesley Degner, (University of Manitoba), and Dr. Harvey Chochinov (University of Manitoba). Citation analysis is useful for examining the research performance of psycho-oncology and supportive care researchers and identifying leaders among them.
Sergio Cantoreggi speaks to Henry Ireland, Commissioning Editor: Sergio Cantoreggi, PhD, is the Chief Scientific Officer and Global Head of Research and Development of the Helsinn Group, a mid-sized pharmaceutical company headquartered in Lugano, Switzerland, and focused on providing cancer supportive care solutions to oncology patients worldwide. Dr Cantoreggi has overall responsibility for all R&D activities of the Helsinn Group and has contributed to six major regulatory approvals of cancer supportive care agents in the USA, Europe and Japan. Dr Cantoreggi joined Helsinn Healthcare in 2000 as drug development scientist and was appointed Head of R&D in 2005. In 2010, he was promoted to his current role. From 1994 to 2000 he worked as toxicologist and regulatory scientist for Du Pont, Sandoz and Novartis. Prior to joining industry, Dr Cantoreggi completed a postdoctoral fellowship and earned a Master of Science degree in chemistry and a Doctoral degree in natural sciences with a thesis on the mechanism of chemical carcinogenesis from the Swiss Federal Institute of Technology in Zürich, Switzerland. Sergio Cantoreggi discusses Helsinn's role in cancer supportive care, describing current treatment options for patients, the company's pipeline and Helsinn's work in supporting the field as a whole.
This paper examines the nature and level of flexible employment in the National Health Service (NHS) by investigating the extent to which part-time work and job sharing arrangements are used in the provision and delivery of health care. It attempts to analyse the reasons for an increasing number of part-timers and a very limited number of job sharers in the NHS and to explain the advantages and disadvantages of each pattern of employment. Data collected through the use of questionnaires and interviews from 55 NHS trusts reveal that the use of part-time work is a tradition that seems to fit well with the cost-saving measures imposed on the management of the service but at the same time it has led to increasing employee dissatisfaction, and that job sharing arrangements are suitable for many NHS employees since the majority of them are women with a desire to combine family commitments with career prospects but a very limited number of employees have had the opportunity to job share. Therefore it is concluded that to attract and retain the quality of staff needed to ensure high performance standards in the provision and delivery of health care the NHS should accept the diversity that exists within its workforce and take a more proactive approach to promoting a variety of flexible working practices and family-friendly policies.
Bhattacharyya, Onil; Schull, Michael; Shojania, Kaveh; Stergiopoulos, Vicky; Naglie, Gary; Webster, Fiona; Brandao, Ricardo; Mohammed, Tamara; Christian, Jennifer; Hawker, Gillian; Wilson, Lynn; Levinson, Wendy
Integrating care for people with complex needs is challenging. Indeed, evidence of solutions is mixed, and therefore, well-designed, shared evaluation approaches are needed to create cumulative learning. The Toronto-based Building Bridges to Integrate Care (BRIDGES) collaborative provided resources to refine and test nine new models linking primary, hospital and community care. It used mixed methods, a cross-project meta-evaluation and shared outcome measures. Given the range of skills required to develop effective interventions, a novel incubator was used to test and spread opportunities for system integration that included operational expertise and support for evaluation and process improvement.
Bernhard, Gerda; Mahler, Cornelia; Seidling, Hanna Marita; Stützle, Marion; Ose, Dominik; Baudendistel, Ines; Wensing, Michel; Szecsenyi, Joachim
Information technology tools such as shared patient-centered, Web-based medication platforms hold promise to support safe medication use by strengthening patient participation, enhancing patients' knowledge, helping patients to improve self-management of their medications, and improving communication on medications among patients and health care professionals (HCPs). However, the uptake of such platforms remains a challenge also due to inadequate user involvement in the development process. Employing a user-centered design (UCD) approach is therefore critical to ensure that user' adoption is optimal. The purpose of this study was to identify what patients with type 2 diabetes mellitus (T2DM) and their HCPs regard necessary requirements in terms of functionalities and usability of a shared patient-centered, Web-based medication platform for patients with T2DM. This qualitative study included focus groups with purposeful samples of patients with T2DM (n=25), general practitioners (n=13), and health care assistants (n=10) recruited from regional health care settings in southwestern Germany. In total, 8 semistructured focus groups were conducted. Sessions were audio- and video-recorded, transcribed verbatim, and subjected to a computer-aided qualitative content analysis. Appropriate security and access methods, supported data entry, printing, and sending information electronically, and tracking medication history were perceived as the essential functionalities. Although patients wanted automatic interaction checks and safety alerts, HCPs on the contrary were concerned that unspecific alerts confuse patients and lead to nonadherence. Furthermore, HCPs were opposed to patients' ability to withhold or restrict access to information in the platform. To optimize usability, there was consensus among participants to display information in a structured, chronological format, to provide information in lay language, to use visual aids and customize information content, and align
van der Krieke, Lian; Emerencia, Ando C; Boonstra, Nynke; Wunderink, Lex; de Jonge, Peter; Sytema, Sjoerd
Mental health policy makers encourage the development of electronic decision aids to increase patient participation in medical decision making. Evidence is needed to determine whether these decision aids are helpful in clinical practice and whether they lead to increased patient involvement and better outcomes. This study reports the outcome of a randomized controlled trial and process evaluation of a Web-based intervention to facilitate shared decision making for people with psychotic disorders. The study was carried out in a Dutch mental health institution. Patients were recruited from 2 outpatient teams for patients with psychosis (N=250). Patients in the intervention condition (n=124) were provided an account to access a Web-based information and decision tool aimed to support patients in acquiring an overview of their needs and appropriate treatment options provided by their mental health care organization. Patients were given the opportunity to use the Web-based tool either on their own (at their home computer or at a computer of the service) or with the support of an assistant. Patients in the control group received care as usual (n=126). Half of the patients in the sample were patients experiencing a first episode of psychosis; the other half were patients with a chronic psychosis. Primary outcome was patient-perceived involvement in medical decision making, measured with the Combined Outcome Measure for Risk Communication and Treatment Decision-making Effectiveness (COMRADE). Process evaluation consisted of questionnaire-based surveys, open interviews, and researcher observation. In all, 73 patients completed the follow-up measurement and were included in the final analysis (response rate 29.2%). More than one-third (48/124, 38.7%) of the patients who were provided access to the Web-based decision aid used it, and most used its full functionality. No differences were found between the intervention and control conditions on perceived involvement in medical
Ben-Arye, Eran; Schiff, Elad; Silbermann, Michael; Agbarya, Abed; Bar-Sela, Gil
There is a dearth of studies on how cultural background influences patients' attitudes and choices regarding complementary and traditional medicine (CTM) integration. To explore Arab and Jewish patients' perspectives regarding CTM use and its possible integration within conventional cancer care. This was a cross-cultural study. We developed a 27-item questionnaire that evaluates patients' perceptions regarding CTM integration in supportive cancer care. The questionnaire was administered to a convenience sample of patients receiving cancer care in community and hospital oncology centers. Of the 770 respondents (response rate 88%), 324 defined their religion as Muslim, Christian, or Druze (henceforth, regarded as Arabs) and 446 were Jews. Respondents in the two groups differed significantly in terms of age, gender, marital status, number of children, education, religiosity, and prevalence of cancer types (excluding breast cancer). Although Arab respondents reported less use of CTM for cancer-related outcomes (39.6% vs. 52.1%; P = 0.001), they expressed greater support than Jewish respondents for optional CTM consultation if provided within conventional oncology care (P < 0.0001). Respondents in both groups stated that their primary expectation from the oncologist concerning CTM was to participate in formulating a CTM treatment plan to be provided within the oncology department. Compared with Arab respondents, Jews expected CTM consultations to focus on improving daily functioning and coping, reducing chemotherapy side effects, and providing spiritual support. Although quality of life-related expectations are more pronounced among Jewish respondents, both groups share the expectation from their health care providers to be actively involved in construction of a tailored integrative CTM treatment plan. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Lynn, J; O'Connor, M A; Dulac, J D; Roach, M J; Ross, C S; Wasson, J H
To develop an alternative healthcare benefit (called MediCaring) and to assess the preferences of older Medicare beneficiaries concerning this benefit, which emphasizes more home-based and supportive health care and discourages use of hospitalization and aggressive treatment. To evaluate the beneficiaries' ability to understand and make a choice regarding health insurance benefits; to measure their likelihood to change from traditional Medicare to the new MediCaring benefit; and to determine the short-term stability of that choice. Focus groups of persons aged 65+ and family members shaped the potential MediCaring benefit. A panel of 50 national experts critiqued three iterations of the benefit. The final version was test marketed by discussing it with 382 older people (men > or = 75 years and women > or = 80 years) in their homes. Telephone surveys a few days later, and again 1 month after the home interview, assessed the potential beneficiaries' understanding and preferences concerning MediCaring and the stability of their responses. Focus groups were held in community settings in New Hampshire, Washington, DC, Cleveland, OH, and Columbia, SC. Test marketing occurred in New Hampshire, Cleveland, OH; Columbia, SC, and Los Angeles, CA. Focus group participants were persons more than 65 years old (11 focus groups), healthcare providers (9 focus groups), and family decision-makers (3 focus groups). Participants in the in-home informing (test marketing group) were persons older than 75 years who were identified through contact with a variety of services. Demographics, health characteristics, understanding, and preferences. Focus group beneficiaries between the ages of 65 and 74 generally wanted access to all possible medical treatment and saw MediCaring as a need of persons older than themselves. Those older than age 80 were mostly in favor of it. Test marketing participants understood the key points of the new benefit: 74% generally liked it, and 34% said they would
Several countries with highly ranked delivery systems have implemented locally-based, publicly-funded primary health care organizations (PHCOs) as vehicles to strengthen their primary care foundations. In the United States, state governments have started down a similar pathway with models that share similarities with international PHCOs. The objective of this study was to determine if these kinds of organizations were working with primary care practices to improve their ability to provide comprehensive, coordinated, and accessible patient-centered care that met quality, safety, and efficiency outcomes-all core attributes of a medical home. This qualitative study looked at 4 different PHCO models-3 from the United States and 1 from Australia-with similar objectives and scope. Primary and secondary data included semi-structured interviews with 26 PHCOs and a review of government documents. The study found that the 4 PHCO models were engaging practices to meet a number of medical home expectations, but the US PHCOs were more uniform in efforts to work with practices and focused on arranging services to meet the needs of complex patients. There was significant variation in level of effort between the Australian PHCOs. These differences can be explained through the state governments' selection of payment models and use of data frameworks to support collaboration and incentivize performance of both PHCOs and practices. These findings offer policy lessons to inform health reform efforts under way to better capitalize on the potential of PHCOs to support a high-functioning primary health foundation as an essential component to a reformed health system.
Nagington, Maurice; Walshe, Catherine; Luker, Karen A
Quality of care is a prominent discourse in modern health-care and has previously been conceptualised in terms of ethics. In addition, the role of knowledge has been suggested as being particularly influential with regard to the nurse-patient-carer relationship. However, to date, no analyses have examined how knowledge (as an ethical concept) impinges on quality of care. Qualitative semi-structured interviews were conducted with 26 patients with palliative and supportive care needs receiving district nursing care and thirteen of their lay carers. Poststructural discourse analysis techniques were utilised to take an ethical perspective on the current way in which quality of care is assessed and produced in health-care. It is argued that if quality of care is to be achieved, patients and carers need to be able to redistribute and redevelop the knowledge of their services in a collaborative way that goes beyond the current ways of working. Theoretical works and extant research are then used to produce tentative suggestions about how this may be achieved. © 2015 The Authors Nursing Inquiry Published by John Wiley & Sons Ltd.
van der Dam, Sandra; Molewijk, Bert; Widdershoven, Guy A M; Abma, Tineke A
Clinical ethics support mechanisms in healthcare are increasing but little is known about the specific developments in elderly care. The aim of this paper is to present a systematic literature review on the characteristics of existing ethics support mechanisms in institutional elderly care. A review was performed in three electronic databases (Pubmed, CINAHL/PsycINFO, Ethxweb). Sixty papers were included in the review. The ethics support mechanisms are classified in four categories: 'institutional bodies' (ethics committee and consultation team); 'frameworks' (analytical tools to assist care professionals); 'educational programmes and moral case deliberation'; and 'written documents and policies'. For each category the goals, methods and ways of organising are described. Ethics support often serves several goals and can be targeted at various levels: case, professional or organisation. Over the past decades a number of changes have taken place in the development of ethics support in elderly care. Considering the goals, ethics support has become more outreaching and proactive, aiming to qualify professionals to integrate ethics in daily care processes. The approaches in clinical ethics support have become more diverse, more focused on everyday ethical issues and better adapted to the concrete learning style of the nursing staff. Ethics support has become less centrally organised and more connected to local contexts and primary process within the organisation. 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.
Full Text Available Objective: To ensure that cyberinfrastructure for sharing scientific data is useful, system developers need to understand what scientists and other intended users do as well as the attitudes and beliefs that shape their behaviours. This paper introduces personas — detailed descriptions of an “archetypical user of a system” — as an approach for capturing and sharing knowledge about potential system users. Setting: Personas were developed to support development of the ‘DataONE’ (Data Observation Network for Earth project, which has developed and deployed a sustainable long-term data preservation and access network to ensure the preservation and access to multi-scale, multi-discipline, and multi-national environmental and biological science data (https://www.dataone.org/what-dataone (Michener et al. 2012. Methods: Personas for DataONE were developed based on data from surveys and interviews done by members of DataONE working groups along with sources such as usage scenarios for DataONE and the Data Conservancy project and the Purdue Data Curation Profiles (Witt et al. 2009. Results: A total of 11 personas were developed: five for various kinds of research scientists (e.g., at different career stages and using different types of data; a science data librarian; and five for secondary roles. Conclusion: Personas were found to be useful for helping developers and other project members to understand users and their needs. The developed DataONE personas may be useful for others trying to develop systems or programs for scientists involved in data sharing.
Gooding, Judith S; Cooper, Liza G; Blaine, Arianna I; Franck, Linda S; Howse, Jennifer L; Berns, Scott D
Family-centered care (FCC) has been increasingly emphasized as an important and necessary element of neonatal intensive care. FCC is conceptualized as a philosophy with a set of guiding principles, as well as a cohort of programs, services, and practices that many hospitals have embraced. Several factors drive the pressing need for family-centered care and support of families of infants in NICUs, including the increase in the number of infants in NICUs; growth in diversity of the population and their concurrent needs; identification of parental and familial stress and lack of parenting confidence; and gaps in support for families, as identified by parents and NICU staff. We explore the origins of and advances in FCC in the NICU and identify various delivery methods and aspects of FCC and family support in the NICU. We examine the research and available evidence supporting FCC in the NICU and offer recommendations for increased dissemination and for future study. Copyright © 2011 Elsevier Inc. All rights reserved.
Kendall, Claire E; Younger, Jaime; Manuel, Douglas G; Hogg, William; Glazier, Richard H; Taljaard, Monica
Building on an existing theoretical shared primary care/specialist care framework to (1) develop a unique typology of care for people living with human immunodeficiency virus (HIV) in Ontario, (2) assess sensitivity of the typology by varying typology definitions, and (3) describe characteristics of typology categories. Retrospective population-based observational study from April 1, 2009, to March 31, 2012. A total of 13,480 eligible patients with HIV and receiving publicly funded health care in Ontario. We derived a typology of care by linking patients to usual family physicians and to HIV specialists with five possible patterns of care. Patient and physician characteristics and outpatient visits for HIV-related and non-HIV-related care were used to assess the robustness and characteristics of the typology. Five possible patterns of care were described as low engagement (8.6%), exclusively primary care (52.7%), family physician-dominated comanagement (10.0%), specialist-dominated comanagement (30.5%), and exclusively specialist care (5.2%). Sensitivity analyses demonstrated robustness of typology assignments. Visit patterns varied in ways that conform to typology assignments. We anticipate this typology can be used to assess the impact of care patterns on the quality of primary care for people living with HIV. Copyright © 2015 Elsevier Inc. All rights reserved.
Snowden, John A; Ahmedzai, Sam H; Ashcroft, John; D'Sa, Shirley; Littlewood, Timothy; Low, Eric; Lucraft, Helen; Maclean, Rhona; Feyler, Sylvia; Pratt, Guy; Bird, Jennifer M
Supportive care plays an increasingly important role in the modern management of multiple myeloma. While modern treatments have significantly prolonged overall and progression free survival through improved disease control, the vast majority of patients remain incurable, and live with the burden of the disease itself and the cumulative side effects of treatments. Maintenance of quality of life presents challenges at all stages of the disease from diagnosis through the multiple phases of active treatment to the end of life. Written on behalf of the British Committee for Standards in Haematology (BCSH) and the UK Myeloma Forum (UKMF), these evidence based guidelines summarize the current national consensus for supportive and symptomatic care in multiple myeloma in the following areas; pain management, peripheral neuropathy, skeletal complications, infection, anaemia, haemostasis and thrombosis, sedation, fatigue, nausea, vomiting, anorexia, constipation, diarrhoea, mucositis, bisphosphonate-induced osteonecrosis of the jaw, complementary therapies, holistic needs assessment and end of life care. Although most aspects of supportive care can be supervised by haematology teams primarily responsible for patients with multiple myeloma, multidisciplinary collaboration involving specialists in palliative medicine, pain management, radiotherapy and surgical specialities is essential, and guidance is provided for appropriate interdisciplinary referral. These guidelines should be read in conjunction with the BCSH/UKMF Guidelines for the Diagnosis and Management of Multiple Myeloma 2011. © 2011 Blackwell Publishing Ltd.
Kanerva, A; Kivinen, T; Lammintakanen, J
Communication is important for safe and quality health care. The study provides needed insight on the communication elements that support patient safety from the psychiatric care view. Fluent information transfer between the health care professionals and care units is important for care planning and maintaining practices. Information should be documented and implemented accordingly. Communication should happen in an open communication culture that enables discussion, the opportunity to have debriefing discussions and the entire staff can feel they are heard. For effective communication, it is also important that staff are active themselves in information collecting about the essential information needed in patient care. In mental health nursing, it is important to pay attention to all elements of communication and to develop processes concerning communication in multidisciplinary teams and across unit boundaries. The study aims to describe which communication elements support patient safety in psychiatric inpatient care from the viewpoint of the nursing staff. Communication is an essential part of care and one of the core competencies of the psychiatric care. It enables safe and quality patient care. Errors in health care are often connected with poor communication. The study brings needed insight from the psychiatric care view to the topic. The data were gathered from semi-structured interviews in which 26 nurses were asked to describe the elements that constitute patient safety in psychiatric inpatient care. The data were analysed inductively from the viewpoint of communication. The descriptions connected with communication formed a main category of communication elements that support patient safety; this main category was made up of three subcategories: fluent information transfer, open communication culture and being active in information collecting. Fluent information transfer consists of the practical implementation of communication; open communication
Douglas, Heather E; Georgiou, Andrew; Tariq, Amina; Prgomet, Mirela; Warland, Andrew; Armour, Pauline; Westbrook, Johanna I
There is limited evidence of the benefits of information and communication technology (ICT) to support integrated aged care services. We undertook a case study to describe carelink+, a centralised client service management ICT system implemented by a large aged and community care service provider, Uniting. We sought to explicate the care-related information exchange processes associated with carelink+ and identify lessons for organisations attempting to use ICT to support service integration. Our case study included seventeen interviews and eleven observation sessions with a purposive sample of staff within the organisation. Inductive analysis was used to develop a model of ICT-supported information exchange. Management staff described the integrated care model designed to underpin carelink+. Frontline staff described complex information exchange processes supporting coordination of client services. Mismatches between the data quality and the functions carelink+ was designed to support necessitated the evolution of new work processes associated with the system. There is value in explicitly modelling the work processes that emerge as a consequence of ICT. Continuous evaluation of the match between ICT and work processes will help aged care organisations to achieve higher levels of ICT maturity that support their efforts to provide integrated care to clients.
Sidebottom, Abbey C; Hellerstedt, Wendy L; Harrison, Patricia A; Jones-Webb, Rhonda J
We examined associations of depressive symptoms and social support with late and inadequate prenatal care in a low-income urban population. The sample was prenatal care patients at five community health centers. Measures of depressive symptoms, social support, and covariates were collected at prenatal care entry. Prenatal care entry and adequacy came from birth certificates. We examined outcomes of late prenatal care and less than adequate care in multivariable models. Among 2341 study participants, 16% had elevated depressive symptoms, 70% had moderate/poor social support, 21% had no/low partner support, 37% had late prenatal care, and 29% had less than adequate prenatal care. Women with both no/low partner support and elevated depressive symptoms were at highest risk of late care (AOR 1.85, CI 1.31, 2.60, p care (AOR 0.74, CI 0.54, 1.10, p = 0.051). Women with moderate/high depressive symptoms were less likely to experience less than adequate care compared to women with low symptoms (AOR 0.73, CI 0.56, 0.96, p = 0.022). Social support and partner support were negatively associated with indices of prenatal care use. Partner support was identified as protective for women with depressive symptoms with regard to late care. Study findings support public health initiatives focused on promoting models of care that address preconception and reproductive life planning. Practice-based implications include possible screening for social support and depression in preconception contexts.
Chehade, M J; Gill, T K; Kopansky-Giles, D; Schuwirth, L; Karnon, J; McLiesh, P; Alleyne, J; Woolf, A D
To address the burden of musculoskeletal (MSK) conditions, a competent health workforce is required to support the implementation of MSK models of care. Funding is required to create employment positions with resources for service delivery and training a fit-for-purpose workforce. Training should be aligned to define "entrustable professional activities", and include collaborative skills appropriate to integrated and people-centred care and supported by shared education resources. Greater emphasis on educating MSK healthcare workers as effective trainers of peers, students and patients is required. For quality, efficiency and sustainability of service delivery, education and research capabilities must be integrated across disciplines and within the workforce, with funding models developed based on measured performance indicators from all three domains. Greater awareness of the societal and economic burden of MSK conditions is required to ensure that solutions are prioritised and integrated within healthcare policies from local to regional to international levels. These healthcare policies require consumer engagement and alignment to social, economic, educational and infrastructure policies to optimise effectiveness and efficiency of implementation. Copyright Â© 2016 Elsevier Ltd. All rights reserved.
Lawrence, Vanessa; Banerjee, Sube
The Croydon care home support team (CHST) was developed in response to reports of patient abuse within long-term care. It presents a novel strategy for improving standards of care within care homes. A qualitative methodology was used to assess the perceived impact of the CHST. In-depth interviews were conducted with 14 care home managers and 24 members of care home staff across 14 care homes. Grounded theory principles guided the collection and analysis of the data. Reports of improved communication between staff, improved staff development and confidence, and improved quality of care point towards the effectiveness of the CHST model. The collaborative approach of the CHST was considered pivotal to its success and presented as an effective method of engaging care home managers and staff. The CHST adopted a systemic approach that placed an equal emphasis on the social, mental health and nursing needs of residents and aimed to address the whole culture of care within the individual homes. The data demonstrate the potential for specialist multi-disciplinary teams to raise standards of care across long-term care settings. Increased awareness of safeguarding issues, improved staff morale and communication and ongoing opportunities for discussion and problem solving promised to sustain improvements. Such services could be instrumental in meeting the government priority of preventing abuse among vulnerable adults.
Cash, Philip; Dekoninck, Elies A; Ahmed-Kristensen, Saeema
Distributed teams are an increasingly common feature of engineeringdesign work. One key factor in the success of these teams isthe development of short- and longer-term shared understanding.A lack of shared understanding has been recognized as a significantchallenge, particularly in the context o...... directly comparing homogeneous and heterogeneousteams in the engineering design context. This has implicationsfor how distributed teams can be more effectively supportedin practice, as well as how shared understanding can be facilitated inengineering design.......Distributed teams are an increasingly common feature of engineeringdesign work. One key factor in the success of these teams isthe development of short- and longer-term shared understanding.A lack of shared understanding has been recognized as a significantchallenge, particularly in the context...... of globally distributed engineeringactivities. A major antecedent for shared understanding isquestion asking and feedback. Building on question-asking theorythis work uses a quasi-experimental study to test the impact of questioningsupport on homogeneous and heterogeneous teams. Theresults show significant...
Meyers, Michelle M; Costanzo, Cindy
Shared governance in health care empowers nurses to share in the decision-making process, which results in decentralized management and collective accountability. Share governance practices have been present in hospitals since the late 1970s. However, shared governance in ambulatory care clinics has not been well established. The subjects of this quality project included staff and administrative nurses in a clinic system. The stakeholder committee chose what model of shared governance to implement and educated clinic staff. The Index of Professional Nursing Governance measured a shared governance score pre- and postimplementation of the Clinic Nursing Council. The Clinic Nursing Council met bimonthly for 3 months during this project to discuss issues and make decisions related to nursing staff. The Index of Professional Nursing Governance scores indicated traditional governance pre- and postimplementation of the Clinic Nursing Council, which is to be expected. The stakeholder committee was beneficial to the initial implementation process and facilitated staff nurse involvement. Shared governance is an evolutionary process that develops empowered nurses and nurse leaders.
Johnsen, Helle; Blom, Karina Fischer; Lee, Anne
eHealth solutions are increasingly implemented in antenatal care to enhance women's involvement. The main aim of this study was to evaluate women's assessment of autonomy supportive care during the antenatal care visits among low-risk pregnant women. An intervention study was conducted including...... a control group attending standard antenatal care and an intervention group having access to an eHealth knowledge base, in addition to standard care. A total of 87 women were included in the control group and a total of 121 women in the intervention group. Data were collected using an online questionnaire 2...... weeks after participants had given birth. Data were analyzed using χ tests and Wilcoxon rank sums. Use of an eHealth knowledge base was associated with statistically significant higher scores for women's overall assessment of antenatal care visits, the organization of antenatal care visits, confidence...
Carrera, Percivil Melendez; Olver, Ian
Personalized medicine is revolutionizing the delivery of oncological care, promising benefits both at the patient and health system levels. The cost of targeted therapies, unfortunately, is becoming more expensive and unaffordable. Where supportive care in cancer concerns the prevention and
Carlson, Eve B; Spain, David A; Muhtadie, Luma; McDade-Montez, Liz; Macia, Kathryn S
Family members of intensive care unit (ICU) patients are sometimes highly distressed and report lower satisfaction with communication and emotional support from staff. Within a study of emotional responses to traumatic stress, associations between family distress and satisfaction with aspects of ICU care were investigated. In 29 family members of trauma patients who stayed in an ICU, we assessed symptoms of depression and posttraumatic stress disorder (PTSD) during ICU care. Later, family members rated staff communication, support, and skills and their overall satisfaction with ICU care. Ratings of staff competence and skills were significantly higher than ratings of frequency of communication, information needs being met, and support. Frequency of communication and information needs being met were strongly related to ratings of support (rs = .75-.77) and staff skills (rs = .77-.85), and aspects of satisfaction and communication showed negative relationships with symptoms of depression (rs = -.31 to -.55) and PTSD (rs = -.17 to -.43). Although satisfaction was fairly high, family member distress was negatively associated with several satisfaction variables. Increased understanding of the effects of traumatic stress on family members may help staff improve communication and increase satisfaction of highly distressed family members. Published by Elsevier Inc.
de Jong, Catharina C; Ros, Wynand Jg; van Leeuwen, Mia; Schrijvers, Guus
Home-dwelling elderly patients with multimorbidity are at risk of fragmentation of care because of the many different professionals involved and a potentially unclear level of communication. Multidisciplinary communication seems to occur incidentally. Mutual feedback is needed for a professional team to provide consistent care and adequate support to the patient system. eHealth technology can improve outcomes. The aim of this study was to evaluate the use of a tool, Congredi, for electronic communication by professionals for the care of home-dwelling elderly patients. The research group was recruited through general practices and home care organizations. Congredi, a tool designed for multidisciplinary communication, was made available for professionals in primary care. It consists of a care plan and a communication channel (secure emailing). Professionals opened Congredi records for elderly patients who had 2 or more professionals involved. The records were the unit of analysis. Data were gathered from the Congredi system over a period of 42 weeks. An inclusion rate of 21.4% (203/950) was achieved; nearly half of the participants were nurses. During the study, professionals were active in 448 patient records; female professionals were prevalent. In the patient records, 3 types of actions (care activities, emailing, and process activities) were registered. Most activities occurred in the multidisciplinary records (mean 12.2), which had twice the number of activities of monodisciplinary records (6.35), and solo records had a mean of 3.43 activities. Most activities were care activities (mean 9.14), emailing had a mean of 0.89 activities, and process activities had a mean of 0.29. An e-communication tool (Congredi) was usable for improving multidisciplinary communication among professionals. It even seemed to yield results for 40% of the professionals who used the e-care plan on their own. The content of the tool provided an active communication practice, with
Dowler, J M; Jordan-Simpson, D A; Adams, O
In Canada today, as in the past, men and women devote different amounts of time and effort to providing health care to their family and in the broader community. This paper examines "the social distinction between masculinity and femininity" in care-giving. Issues of gender inequality in care-giving have the potential to affect the formal health care system as the burden of caring will increase over the next few decades with the aging of society. This increase in need for care is occurring at a time when primary care providers--women--have additional demand on their time. Canadian society has been facing a series of social, demographic and economic shifts such as a higher divorce rate, two-income families, women's increasing professional commitments and first pregnancies at later ages, these factors may not affect women's willingness to care for others. However women may need support to provide the care. Assuming present trends, increasing need for families to care for elderly relatives may be inevitable. Perhaps society will recognize this need and provide support to those providing informal care. This could take the form of allowing individuals more time to provide care through child care leave, leave to care for parents and job-sharing. Support to those providing informal care might also be facilitated through community support services such as respite care, household maintenance, psychological support to care-givers, support groups, informal networks within a community and consideration of unconventional support methods.
Oeldorf-Hirsch, Anne; High, Andrew C; Christensen, John L
This study investigates the relationship between sharing tracked mobile health (mHealth) information online, supportive communication, feedback, and health behavior. Based on the Integrated Theory of mHealth, our model asserts that sharing tracked health information on social networking sites benefits users' perceptions of their health because of the supportive communication they gain from members of their online social networks and that the amount of feedback people receive moderates these associations. Users of mHealth apps (N = 511) completed an online survey, and results revealed that both sharing tracked health information and receiving feedback from an online social network were positively associated with supportive communication. Network support both corresponded with improved health behavior and mediated the association between sharing health information and users' health behavior. As users received greater amounts of feedback from their online social networks, however, the association between sharing tracked health information and health behavior decreased. Theoretical implications for sharing tracked health information and practical implications for using mHealth apps are discussed.
Crespo, Richard; Shrewsberry, Molly
The purpose of this article is to expand the understanding of self-management support by describing factors that contribute to implementing a comprehensive self-management program in primary care. Four rural health centers in medically underserved areas participated in a study to document the implementation of a self-management program. This program consisted of a social marketing plan and decision-making tools to guide patients in making self-management behavior changes. The stages of change constructs of the transtheoretical model were used to design the social marketing plan. Key informant interviews were conducted at 6-month and 9-month intervals to document the implementation process. A standardized set of questions was used in the interviews. The data from the interviews were analyzed using content analysis techniques. One of the principle findings is that self-management support requires putting a system in place, not just adding a new component to primary care. The health centers that fully implemented the self-management program made an organizational commitment to keep self-management on the agenda in management meetings, clinical staff set the example by adopting self-management behaviors, and patient self-management support was implemented in multiple patient care venues. Primary care centers with limited financial resources are able to integrate self-management support into their system of chronic illness care.
Moser, Albine; van der Bruggen, Harry; Widdershoven, Guy; Spreeuwenberg, Cor
Diabetes mellitus is a major public health problem. Little is known about how people with type 2 diabetes experience self-management in a nurse-led, shared-care programme. The purpose of this article is to report an empirically grounded conceptualization of self-management in the context of autonomy of people with type 2 diabetes. This study has a qualitative descriptive, and exploratory design with an inductive approach. Data were collected by means of in-depth interviews. The sample consisted of older adults with type 2 diabetes in a nurse-led, shared-care setting. The data analysis was completed by applying the constant comparative analysis as recommended in grounded theory. People with type 2 diabetes use three kinds of self-management processes: daily, off-course, and preventive. The steps for daily self-management are adhering, adapting, and acting routinely. The steps for off-course self-management are becoming aware, reasoning, deciding, acting, and evaluating. The steps for preventive self-management are experiencing, learning, being cautious, and putting into practice. These processes are interwoven and recurring. Self-management consists of a complex and dynamic set of processes and it is deeply embedded in one's unique life situation. Support from diabetes specialist nurses and family caregivers is a necessity of self-managing diabetes.
Full Text Available Background: The practical difficulties for patients with stroke include lack of information about their condition, poor knowledge of the services and benefits available. Specialist Stroke nurses provide education and support services for people with Stroke in many health care systems. A key goal is helping and empowering unable people to self-manage their stroke and supporting caregivers of these valnurable population, too. Objective: The objective of this review was to assess the role of specialist nurse in care for patients following a stroke and their caregivers support. Search methods: The databases CINAHL, PubMed, Science Direct and Synergy were searched from 1988 to 2017 using the keywords Stroke, Specialist Nurse, Care, Caregivers and support. Bibliographies of relevant papers were searched, and hand searching of relevant publications was undertaken to identify additional Studies. Selection criteria: All studies of the effects of a specialist nurse practitioner on short and long term stroke outcomes were included in the review. Data collection and analysis: Three investigators performed data extraction and quality scoring independently; any discrepancies were resolved by consensus. Findings: Stroke, Specialist Nurse, Care, Caregivers concepts and labels are defined and measured in different and often contradictory ways by using 31 founded study. Conclusions: The findings indicate a dissonance in the views of different stakeholders within the care system. The division of labour associated with nursing care and specialist nurse requires further exploration. The contrasting paradigms of health care professionals and people with stroke regarding models of disability were highlighted. Stroke, like other chronic illnesses, requires substantial nursing care. There is a growing number of specialist nurses in the workforce, however, little is known how their role interfaces with other nurses.
Hofstede, Stefanie N; van Bodegom-Vos, Leti; Wentink, Manon M; Vleggeert-Lankamp, Carmen L A; Vliet Vlieland, Thea P M; Marang-van de Mheen, Perla J; Vroomen, P.C.
INTRODUCTION: Due to the increasing specialization of medical professionals, patients are treated by multiple disciplines. To ensure that delivered care is patient-centered, it is crucial that professionals and the patient together decide on treatment (shared decision making (SDM)). However, it is
Heather E Douglas
Full Text Available Introduction: There is limited evidence of the benefits of information and communication technology (ICT to support integrated aged care services. Objectives: We undertook a case study to describe carelink+, a centralised client service management ICT system implemented by a large aged and community care service provider, Uniting. We sought to explicate the care-related information exchange processes associated with carelink+ and identify lessons for organisations attempting to use ICT to support service integration. Methods: Our case study included seventeen interviews and eleven observation sessions with a purposive sample of staff within the organisation. Inductive analysis was used to develop a model of ICT-supported information exchange. Results: Management staff described the integrated care model designed to underpin carelink+. Frontline staff described complex information exchange processes supporting coordination of client services. Mismatches between the data quality and the functions carelink+ was designed to support necessitated the evolution of new work processes associated with the system. Conclusions: There is value in explicitly modelling the work processes that emerge as a consequence of ICT. Continuous evaluation of the match between ICT and work processes will help aged care organisations to achieve higher levels of ICT maturity that support their efforts to provide integrated care to clients.
Georgiou, Andrew; Tariq, Amina; Prgomet, Mirela; Warland, Andrew; Armour, Pauline; Westbrook, Johanna I
Introduction: There is limited evidence of the benefits of information and communication technology (ICT) to support integrated aged care services. Objectives: We undertook a case study to describe carelink+, a centralised client service management ICT system implemented by a large aged and community care service provider, Uniting. We sought to explicate the care-related information exchange processes associated with carelink+ and identify lessons for organisations attempting to use ICT to support service integration. Methods: Our case study included seventeen interviews and eleven observation sessions with a purposive sample of staff within the organisation. Inductive analysis was used to develop a model of ICT-supported information exchange. Results: Management staff described the integrated care model designed to underpin carelink+. Frontline staff described complex information exchange processes supporting coordination of client services. Mismatches between the data quality and the functions carelink+ was designed to support necessitated the evolution of new work processes associated with the system. Conclusions: There is value in explicitly modelling the work processes that emerge as a consequence of ICT. Continuous evaluation of the match between ICT and work processes will help aged care organisations to achieve higher levels of ICT maturity that support their efforts to provide integrated care to clients. PMID:29042851
Verkaik, Renate; van Antwerpen-Hoogenraad, Paulien; de Veer, Anke; Francke, Anneke; Huis In Het Veld, Judith
Background Self-management in patients and family caregivers confronted with dementia is not self-evident. Self-management skills may be limited because of the progressive cognitive decline of the patient and because family caregivers are often also very aged. Self-management support by nursing staff is therefore of paramount importance. Objectives To gain insight into how nursing staff perceive their self-management support tasks, and how they put them into practice. Research questions are: 'What are the opinions and experiences of Dutch nursing staff working in home care or residential elderly care regarding self-management support for people with dementia and their family caregivers?' and 'Do nursing staff feel sufficiently trained and skilled for self-management support?'. Methods A mixed methods approach was used, combining cross-sectional quantitative survey data from 206 Dutch nursing professionals with qualitative interviews among 12 nursing staff working in home care or residential elderly care in The Netherlands. Results Nursing staff working in home care experienced self-management support of people with dementia as a part of their job and as an attractive task. They consider 'helping people with dementia to maintain control over their lives by involving them in decisions in daily care' the essence of self-management support. Nursing staff saw family caregivers as their main partners in providing self-management support to the patient. They were less aware that family caregivers themselves might also need self-management support. Nursing staff often felt insufficiently trained to give adequate self-management support. RN's and CNA's did not differ in their opinions, experiences and training needs. Conclusions Nursing staff in home care do consider self-management support an important and attractive task in dementia care. Their skills for providing self-management support to patients with dementia and family caregivers need improvement. Recommendations
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
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.
Banarsee, Ricky; Kelly, Cornelius; El-Osta, Austen; Thomas, Paul; Brophy, Chris
The rapidly increasing number of people who have long-term conditions requires a system of coordinated support for self-care throughout the NHS. A system to support self-care needs to be aligned to systems that support shared-care and community development, making it easier for the multidisciplinary teams who provide care to also help patients and populations to help themselves. Public health practitioners need to work closely with clinicians to achieve this. The best place to coordinate this partnership is a community-based coordinating hub, or local health community - a geographic area of about 50,000 population where different contributions to self-care can be aligned. A shared vision for both health and disease management is needed to ensure consistent messaging by all. A three tier system of shared care can help to combine vertical and horizontal integration. This paper uses severe and enduring mental illness as an exemplar to anticipate the design of such a system.
Poulymenopoulou, M; Malamateniou, F; Vassilacopoulos, G
Holistic (health and social) care aims at providing comprehensive care to the community, especially to elderly people and people with multiple illnesses. In turn, this requires using health and social care resources more efficiently through enhanced collaboration and coordination among the corresponding organizations and delivering care closer to patient needs and preferences. This paper takes a patient-centered, process view of holistic care delivery and focuses on requirements elicitation for supporting holistic care processes and enabling authorized users to access integrated patient information at the point of care when needed. To this end, an approach to holistic care process-support requirements elicitation is presented which is based on business process modeling and places particular emphasis on empowering collaboration, coordination and information sharing among health and social care organizations by actively involving users and by providing insights for alternative process designs. The approach provides a means for integrating diverse legacy applications in a process-oriented environment using a service-oriented architecture as an appropriate solution for supporting and automating holistic care processes. The approach is applied in the context of emergency medical care aiming at streamlining and providing support technology to cross-organizational health and social care processes to address global patient needs.
... DEVELOPMENT SECTION 8 TENANT BASED ASSISTANCE: HOUSING CHOICE VOUCHER PROGRAM Special Housing Types Shared Housing § 982.615 Shared housing: Occupancy. (a) Sharing a unit. An assisted family may reside in shared...? (1) If approved by the HA, a live-in aide may reside with the family to care for a person with...
Land, Victoria; Parry, Ruth; Seymour, Jane
Shared decision making (SDM) is generally treated as good practice in health-care interactions. Conversation analytic research has yielded detailed findings about decision making in health-care encounters. To map decision making communication practices relevant to health-care outcomes in face-to-face interactions yielded by prior conversation analyses, and to examine their function in relation to SDM. We searched nine electronic databases (last search November 2016) and our own and other academics' collections. Published conversation analyses (no restriction on publication dates) using recordings of health-care encounters in English where the patient (and/or companion) was present and where the data and analysis focused on health/illness-related decision making. We extracted study characteristics, aims, findings relating to communication practices, how these functioned in relation to SDM, and internal/external validity issues. We synthesised findings aggregatively. Twenty-eight publications met the inclusion criteria. We sorted findings into 13 types of communication practices and organized these in relation to four elements of decision-making sequences: (i) broaching decision making; (ii) putting forward a course of action; (iii) committing or not (to the action put forward); and (iv) HCPs' responses to patients' resistance or withholding of commitment. Patients have limited opportunities to influence decision making. HCPs' practices may constrain or encourage this participation. Patients, companions and HCPs together treat and undertake decision making as shared, though to varying degrees. Even for non-negotiable treatment trajectories, the spirit of SDM can be invoked through practices that encourage participation (eg by bringing the patient towards shared understanding of the decision's rationale). © 2017 The Authors Health Expectations Published by John Wiley & Sons Ltd.
Sjoerd Kooiker; Mirjam de Klerk; Judith ter Berg; Yolanda Schothorst
The costs of care in the Netherlands have risen sharply since 2000 and will become increasingly difficult to finance in the future. How are those increasing costs to be paid, and who is to pay them? The Dutch care system is based on the principle of solidarity, which begs the question of who is
McWilliams, J Michael; Gilstrap, Lauren G; Stevenson, David G; Chernew, Michael E; Huskamp, Haiden A; Grabowski, David C
Postacute care is thought to be a major source of wasteful spending. The extent to which accountable care organizations (ACOs) can limit postacute care spending has implications for the importance and design of other payment models that include postacute care. To assess changes in postacute care spending and use of postacute care associated with provider participation as ACOs in the Medicare Shared Savings Program (MSSP) and the pathways by which they occurred. With the use of fee-for-service Medicare claims from a random 20% sample of beneficiaries with 25 544 650 patient-years, 8 395 426 hospital admissions, and 1 595 352 stays in skilled nursing facilities (SNFs) from January 1, 2009, to December 31, 2014, difference-in-difference comparisons of beneficiaries served by ACOs with beneficiaries served by local non-ACO health care professionals (control group) were performed before vs after entry into the MSSP. Differential changes were estimated separately for cohorts of ACOs entering the MSSP in 2012, 2013, and 2014. Patient attribution to an ACO in the MSSP. Postacute spending, discharge to a facility, length of SNF stays, readmissions, use of highly rated SNFs, and mortality, adjusted for patient characteristics. For the 2012 cohort of 114 ACOs, participation in the MSSP was associated with an overall reduction in postacute spending (differential change in 2014 for ACOs vs control group, -$106 per beneficiary [95% CI, -$176 to -$35], or -9.0% of the precontract unadjusted mean of $1172; P = .003) that was driven by differential reductions in acute inpatient care, discharges to facilities rather than home (-0.6 percentage points [95% CI, -1.1 to 0.0], or -2.7% of the unadjusted precontract mean of 22.6%; P = .03), and length of SNF stays (-0.60 days per stay [95% CI, -0.99 to -0.22], or -2.2% of the precontract unadjusted mean of 27.07 days; P = .002). Reductions in use of SNFs and length of stay were largely due to within-hospital or
Milne, Heather; Huby, Guro; Buckingham, Susan; Hayward, James; Sheikh, Aziz; Cresswell, Kathrin; Pinnock, Hilary
Sharing the electronic health-care record (EHR) during consultations has the potential to facilitate patient involvement in their health care, but research about this practice is limited. We used multichannel video recordings to identify examples and examine the practice of screen-sharing within 114 primary care consultations. A subset of 16 consultations was viewed by the general practitioner and/or patient in 26 reflexive interviews. Screen-sharing emerged as a significant theme and was explored further in seven additional patient interviews. Final analysis involved refining themes from interviews and observation of videos to understand how screen-sharing occurred, and its significance to patients and professionals. Eighteen (16%) of 114 videoed consultations involved instances of screen-sharing. Screen-sharing occurred in six of the subset of 16 consultations with interviews and was a significant theme in 19 of 26 interviews. The screen was shared in three ways: 'convincing' the patient of a diagnosis or treatment; 'translating' between medical and lay understandings of disease/medication; and by patients 'verifying' the accuracy of the EHR. However, patients and most GPs perceived the screen as the doctor's domain, not to be routinely viewed by the patient. Screen-sharing can facilitate patient involvement in the consultation, depending on the way in which sharing comes about, but the perception that the record belongs to the doctor is a barrier. To exploit the potential of sharing the screen to promote patient involvement, there is a need to reconceptualise and redesign the EHR. © 2014 The Authors Health Expectations Published by John Wiley & Sons Ltd.
Verdezoto, Nervo; Grönvall, Erik
This paper depicts findings from a project focusing on designing medicine management support for nonclinical settings. In particular, we discuss how we can support older adults across boundaries of care in planning, informing, reminding and documenting activities. Additionally, we present...
Child Care Bureau, 2010
"Child Care Helps America Work and Learn" is a new publication produced by the Child Care Bureau. This new series will highlight some of the many Recovery Act-funded child care success stories from communities across the country that illustrate how the Bureau is working toward the shared goal of supporting children and families. This…
The Evidence-base for Using Ontologies and Semantic Integration Methodologies to Support Integrated Chronic Disease Management in Primary and Ambulatory Care: Realist Review. Contribution of the IMIA Primary Health Care Informatics WG.
Liyanage, H; Liaw, S-T; Kuziemsky, C; Terry, A L; Jones, S; Soler, J K; de Lusignan, S
Most chronic diseases are managed in primary and ambulatory care. The chronic care model (CCM) suggests a wide range of community, technological, team and patient factors contribute to effective chronic disease management. Ontologies have the capability to enable formalised linkage of heterogeneous data sources as might be found across the elements of the CCM. To describe the evidence base for using ontologies and other semantic integration methods to support chronic disease management. We reviewed the evidence-base for the use of ontologies and other semantic integration methods within and across the elements of the CCM. We report them using a realist review describing the context in which the mechanism was applied, and any outcome measures. Most evidence was descriptive with an almost complete absence of empirical research and important gaps in the evidence-base. We found some use of ontologies and semantic integration methods for community support of the medical home and for care in the community. Ubiquitous information technology (IT) and other IT tools were deployed to support self-management support, use of shared registries, health behavioural models and knowledge discovery tools to improve delivery system design. Data quality issues restricted the use of clinical data; however there was an increased use of interoperable data and health system integration. Ontologies and semantic integration methods are emergent with limited evidence-base for their implementation. However, they have the potential to integrate the disparate community wide data sources to provide the information necessary for effective chronic disease management.
Petersen, Michael Bang; Aarøe, Lene; Jensen, Niels Holm
Do politically irrelevant events influence important policy opinions? Previous research on social welfare attitudes has emphasized the role of political factors such as economic self-interest and ideology. Here, we demonstrate that attitudes to social welfare are also influenced by short-term flu......—we consistently find that hungry individuals act in a greedier manner but describe themselves as more cooperative and express greater support for social welfare.......Do politically irrelevant events influence important policy opinions? Previous research on social welfare attitudes has emphasized the role of political factors such as economic self-interest and ideology. Here, we demonstrate that attitudes to social welfare are also influenced by short......-term fluctuations in hunger. Using theories in evolutionary psychology, we predict that hungry individuals will be greedier and take more resources from others while also attempting to induce others to share by signaling cooperative intentions and expressing support for sharing, including evolutionarily novel forms...
Norinder, Maria; Goliath, Ida; Alvariza, Anette
Patients who receive palliative home care are in need of support from family members, who take on great responsibility related to caregiving but who often feel unprepared for this task. Increasing numbers of interventions aimed at supporting family members in palliative care have been described and evaluated. It is not known whether and how these interventions actually affect the care or support provided to a patient, even though it has been suggested that family members would be likely to provide better care and support and thus allow for positive experiences for patients. However, this has not been studied from the perspective of the patients themselves. The objective of our study was to explore patients' experiences of care and support at home after family members' participation in a psychoeducational intervention during palliative care. Our study took a qualitative approach, and interviews were conducted with 11 patients whose family members had participated in a psychoeducational intervention during palliative home care. The interviews were analyzed employing interpretive description. Patients' experiences were represented by three themes: "safe at home," "facilitated and more honest communication," and "feeling like a unit of care." Patients felt that their needs were better met and that family members became more confident at home without risking their own health. Patients felt relieved when family members were given the opportunity to talk and reflect with others and hoped that the intervention would contribute to more honest communications between themselves and their family members. Further, it was of great importance to patients that family members receive attention from and be confirmed and supported by healthcare professionals. Our findings show how an intervention targeted at family members during palliative home care also benefits the patients.
Thaís Araújo Barbosa
Full Text Available Objective: to understand and identify the support network and social support from the perspective of families of children with chronic conditions. Methods: a qualitative study, with content analysis of 134 records, followed by ten semi-structured interviews. Results: the analysis has revealed that the primary caregiver, the mother, participates in a network of limited support, only with the help of her husband, children, grandparents and the child´s godparents. They also have a social network through a multidisciplinary team, which in some cases is not effective. Conclusion: families have a deficient and limited support network and the demand for care rely only on the support of the husband, grandparents, children, and godparents. Social networking refers to the philanthropic institutions, while the aid of public service, basic health unit is basic.
Coughlin, Mary; Gibbins, Sharyn; Hoath, Steven
This paper is a discussion of evidence-based core measures for developmental care in neonatal intensive care units. Inconsistent definition, application and evaluation of developmental care have resulted in criticism of its scientific merit. The key concept guiding data organization in this paper is the United States of America's Joint Commission's concept of 'core measures' for evaluating and accrediting healthcare organizations. This concept is applied to five disease- and procedure-independent measures based on the Universe of Developmental Care model. Electronically accessible, peer reviewed studies on developmental care published in English were culled for data supporting the selected objective core measures between 1978 and 2008. The quality of evidence was based on a structured predetermined format that included three independent reviewers. Systematic reviews and randomized control trials were considered the strongest level of evidence. When unavailable, cohort, case control, consensus statements and qualitative methods were considered the strongest level of evidence for a particular clinical issue. Five core measure sets for evidence-based developmental care were evaluated: (1) protected sleep, (2) pain and stress assessment and management, (3) developmental activities of daily living, (4) family-centred care, and (5) the healing environment. These five categories reflect recurring themes that emerged from the literature review regarding developmentally supportive care and quality caring practices in neonatal populations. This practice model provides clear metrics for nursing actions having an impact on the hospital experience of infant-family dyads. Standardized disease-independent core measures for developmental care establish minimum evidence-based practice expectations and offer an objective basis for cross-institutional comparison of developmental care programmes.
A patient named "Bill" was assigned to my team in the summer of 2012 for an autologous stem cell transplantation for lymphoma. Bill had previous chemotherapy and had attained clinical status eligibility for a transplantation. Although Bill was rather quiet, he had a lot of questions about me, my family, and my travels. In turn, he shared about his work as a veterinarian, his clinic, and his two dogs that went everywhere with him. He also shared his love of the outdoors and traveling, highlighted by a trip on the Amazon River with his father and daughter. I told him that one of my hobbies is making dill pickles. He countered with stories about his bees and honey, and we agreed to share our homemade goods.
Grim, Katarina; Rosenberg, David; Svedberg, Petra; Schön, Ulla-Karin
Shared decision-making (SDM) is an emergent research topic in the field of mental health care and is considered to be a central component of a recovery-oriented system. Despite the evidence suggesting the benefits of this change in the power relationship between users and practitioners, the method has not been widely implemented in clinical practice. The objective of this study was to investigate decisional and information needs among users with mental illness as a prerequisite for the development of a decision support tool aimed at supporting SDM in community-based mental health services in Sweden. Three semi-structured focus group interviews were conducted with 22 adult users with mental illness. The transcribed interviews were analyzed using a directed content analysis. This method was used to develop an in-depth understanding of the decisional process as well as to validate and conceptually extend Elwyn et al.'s model of SDM. The model Elwyn et al. have created for SDM in somatic care fits well for mental health services, both in terms of process and content. However, the results also suggest an extension of the model because decisions related to mental illness are often complex and involve a number of life domains. Issues related to social context and individual recovery point to the need for a preparation phase focused on establishing cooperation and mutual understanding as well as a clear follow-up phase that allows for feedback and adjustments to the decision-making process. The current study contributes to a deeper understanding of decisional and information needs among users of community-based mental health services that may reduce barriers to participation in decision-making. The results also shed light on attitudinal, relationship-based, and cognitive factors that are important to consider in adapting SDM in the mental health system.
Salmi, Riikka; Tolvanen, Mimmi; Suhonen, Riitta; Lahti, Satu; Närhi, Timo
Increasing number of older adults lives in their own homes, but needs help in many daily routines. Domiciliary care nursing staff (DCNS) is often needed to support oral home care. However, information of nursing staff's knowledge, skills and activity in this task is sparse. The study aimed to assess DCNS knowledge, perceived skills and activities to support oral home care of older domiciliary care clients. The study was conducted among DCNS in one of the largest cities in Finland. All DCNS members (n = 465) received a questionnaire with 14 multiple choice and open questions regarding the perceived skills, knowledge and activities of oral health guidance of older domiciliary care clients. In total, 115 (25%) DCNS members returned the questionnaires. Frequencies, percentages, means and standard deviations were used to describe the samples and study variables. DCNS was categorised according to age and working years for group comparisons, which were assessed with chi-squared test. Knowledge concerning oral health was mostly on a high level. Around 50% of DCNS considered their knowledge regarding dental prosthesis hygiene as sufficient. Of the DCNS, 67% informed that they had received education on oral health care. However, over 50% of the DCNS had a need for further education in issues related to oral home care. DCNS were active in supporting most oral and prosthesis hygiene means, yet less in guidance concerning toothbrushing. Activity to support cleaning the interdental spaces was the weakest, in which only 12% of the respondents considered having average or excellent skills. Younger DCNS had better knowledge on oral home care due to recent education, but older staff members were more skilful in performing oral hygiene measures. There is a need for structured instructions and training on oral home care for DCNS. Oral home care should be taken into account more often and regularly. © 2018 Nordic College of Caring Science.
Asiri, Eman; Khalifa, Mohamed; Shabir, Syed-Abdul; Hossain, Md Nassif; Iqbal, Usman; Househ, Mowafa
Sharing daily activities on social media has become a part of our lifestyle, but little is known about sharing sensitive health information in the Arab world. The objective of this study is to explore how social media users in the Arab world share sensitive health information through Facebook. A retrospective qualitative analysis was used in the study. A total of 110 Facebook groups, related to HIV, sickle cell and depression were screened between 5 June and 1 December 2014. Forty four Facebook groups met the inclusion criteria. 28 471 posts were extracted, of which 649 met inclusion criteria. Forty two percent of health information exchanged were related to HIV, 34% to depression and 24% to sickle cell diseases. The majority of postings were from Egypt 21.1%, Saudi Arabia 20%, Algeria 10% and Libya 9.2%. Male posts were 54.2% while 45.8% were posted by females. Individuals utilized Facebook groups to share personal experiences of their disease 31%, in addition to being used for seeking queries 13.6%, offering explicit advice 8.3%, reporting signs and symptoms of the disease 7.3% and posting their communication with the health-care provider 6.6%. Users in the Arab world use social media to exchange sensitive health information, which could have serious implications regarding the privacy of the information shared with other members of the group. On the other hand, sharing health information could have positive effects for patients, such as sharing disease experiences and peer support. However, more work is needed to ensure that Facebook users in the Arab world are aware of the potential consequences of sharing sensitive health information through social media. © The Author 2016. Published by Oxford University Press in association with the International Society for Quality in Health Care. All rights reserved. For permissions, please e-mail: firstname.lastname@example.org
Full Text Available Osteoporosis Choice, an encounter decision aid, can engage patients and clinicians in shared decision making about osteoporosis treatment. Its effectiveness compared to the routine provision to clinicians of the patient's estimated risk of fracture using the FRAX calculator is unknown.Patient-level, randomized, three-arm trial enrolling women over 50 with osteopenia or osteoporosis eligible for treatment with bisphosphonates, where the use of Osteoporosis Choice was compared to FRAX only and to usual care to determine impact on patient knowledge, decisional conflict, involvement in the decision-making process, decision to start and adherence to bisphosphonates.We enrolled 79 women in the three arms. Because FRAX estimation alone and usual care produced similar results, we grouped them for analysis. Compared to these, use of Osteoporosis Choice increased patient knowledge (median score 6 vs. 4, p = .01, improved understanding of fracture risk and risk reduction with bisphosphonates (p = .01 and p<.0001, respectively, had no effect on decision conflict, and increased patient engagement in the decision making process (OPTION scores 57% vs. 43%, p = .001. Encounters with the decision aid were 0.8 minutes longer (range: 33 minutes shorter to 3.0 minutes longer. There were twice as many patients receiving and filling prescriptions in the decision aid arm (83% vs. 40%, p = .07; medication adherence at 6 months was no different across arms.Supporting both patients and clinicians during the clinical encounter with the Osteoporosis Choice decision aid efficiently improves treatment decision making when compared to usual care with or without clinical decision support with FRAX results.clinical trials.gov NCT00949611.
Durand, M.A.; Carpenter, L.; Dolan, H.; Bravo, P.; Mann, M.; Bunn, F.; Elwyn, G.
BACKGROUND: Increasing patient engagement in healthcare has become a health policy priority. However, there has been concern that promoting supported shared decision-making could increase health inequalities. OBJECTIVE: To evaluate the impact of SDM interventions on disadvantaged groups and health
Cash, Philip; Dekoninck, Elies; Ahmed-Kristensen, Saeema
Distributed teams are an increasingly common feature of engineering design work. One key factor in the success of these teams is the development of short- and longer-term shared understanding. A lack of shared understanding has been recognized as a significant challenge, particularly in the context of globally distributed engineering activities. A major antecedent for shared understanding is question asking and feedback. Building on question-asking theory this work uses a quasi-experimental s...
Full Text Available Christa L Cook,1 Shantrel Canidate,2 Nicole Ennis,3 Robert L Cook4 1Department of Family, Community, and Health System Science, College of Nursing, 2Social and Behavioral Science, College of Public Health and Health Profession, 3Department of Clinical and Health Psychology, College of Public Health and Health Professions, 4Department of Epidemiology, College of Public Health and Health Professions and College of Medicine, University of Florida, Gainesville, FL, USA Purpose: Despite recommendations for early entry into human immunodeficiency virus (HIV care, many people diagnosed with HIV delay seeking care. Multiple types of social support (ie, cognitive, emotional, and tangible are often needed for someone to transition into HIV care, but a lack of emotional support at diagnosis may be the reason why some people fail to stay engaged in care. Thus, the purpose of this study was to identify how people living with HIV conceptualized emotional support needs and delivery at diagnosis. Method: We conducted a secondary analysis of qualitative data from 27 people living with HIV, many of whom delayed entry into HIV care. Results: Participants described their experiences seeking care after an HIV diagnosis and identified components of emotional support that aided entry into care – identification, connection, and navigational presence. Many participants stated that these types of support were ideally delivered by peers with HIV. Conclusion: In clinical practice, providers often use an HIV diagnosis as an opportunity to educate patients about HIV prevention and access to services. However, this type of social support may not facilitate engagement in care if emotional support needs are not met. Keywords: linkage to care, engagement in care, social support, qualitative
Plas, A.G.M. van der; Francke, A.L.; Deliens, L.; Jansen, W.J.J.; Vissers, K.C.; Onwuteaka-Philipsen, B.D.
Introduction: Case managers have been introduced in primary palliative care in the Netherlands; these are nurses with expertise in palliative care who offer support to patients and informal care givers. The case manager provides support in addition to the care provided by the home care nurse and
Conclusions: The results of the study showed that mother–infant attachment improved by increasing mothers' satisfaction of supportive nursing care. Therefore, it seems necessary to increase maternal satisfaction through given nursing care support, in order to promote mother–infant attachment.
Full Text Available An essay that aims to reflect on the family experience of care in chronic situation, increasing the understanding of the family as the primary caregiver. It is based on comprehensive approach in studies conducted in three matrix searches from family care experiences. We have taken three axes to organize our reflections: a conformation of family care in chronic situation, highlighting the multiple costs incurred to the family, which can exhaust the potential of care and establish or increase its vulnerability if it is not backed by networks support and sustenance; b family rearrangements for the care, giving visibility to care cores in which many loved family members share the care, dynamic, plural and changeable way; c self care modeling family care, pointing to the range of possibilities of the person taking care of diseased conditions supported by people close to them. We learn that the family takes care of itself in everyday life and in the illness experience, creating networks that can provide you support and sustenance. Thus, professionals in health practices should shape up in a longitudinal and very personal way, by reference to the family care, supporting him in what is his own.
Bromer, Juliet; Bibbs, Tonya
Family child care (FCC) providers often experience isolation from other early childhood and child care professionals. Yet, research suggests that providers who network with other providers, engage with community resources, and belong to support groups tend to offer higher quality child care. For example, the Family Child Care Network Impact Study…
Meyer, Lori E.; Ostrosky, Michaelene M.; Yu, SeonYeong; Favazza, Paddy C.; Mouzourou, Chryso; van Luling, Lisa; Park, Hyejin
Teachers often recommend that families engage their children in shared book reading to support literacy learning at home. When teachers purposefully provide families with home literacy activities there are benefits for everyone involved. The purpose of this article is to report the findings of a study that examined parental participation and…
Abidli, Yamine; Piette, Danielle; Casini, Annalisa
There is a broad consensus on the importance for health professionals to support co-active patients. However, in practice, very few "patient care partnership" approaches have been developed. We hypothesized that the lack of investment in supporting patient care partnerships is due to the lack of interest in the skills needed by caregivers to provide such support. This paper intends to address thisgap. The patient care partnership method is studied, adapted and developed from existing models. It complements, harmonizes and integrates various schools of thought arising from the need to place the patient at the center of care and life in general. The patient care partnership method includes 7 stages during which the professional accompanies the patient through the process of care. The methodological approach for training professionals is designed to ensure that professionals experience the change as well as its difficulties of the change they expect from the patient in the care relationship. This method now needs to be validated by the experience of other professionals in order define the limits of application and to allow further development.
Jacobs, J; Weir, C; Evans, R S; Staes, C
Following liver transplantation, patients require lifelong immunosuppressive care and monitoring. Computerized clinical decision support (CDS) has been shown to improve post-transplant immunosuppressive care processes and outcomes. The readiness of transplant information systems to implement computerized CDS to support post-transplant care is unknown. a) Describe the current clinical information system functionality and manual and automated processes for laboratory monitoring of immunosuppressive care, b) describe the use of guidelines that may be used to produce computable logic and the use of computerized alerts to support guideline adherence, and c) explore barriers to implementation of CDS in U.S. liver transplant centers. We developed a web-based survey using cognitive interviewing techniques. We surveyed 119 U.S. transplant programs that performed at least five liver transplantations per year during 2010-2012. Responses were summarized using descriptive analyses; barriers were identified using qualitative methods. Respondents from 80 programs (67% response rate) completed the survey. While 98% of programs reported having an electronic health record (EHR), all programs used paper-based manual processes to receive or track immunosuppressive laboratory results. Most programs (85%) reported that 30% or more of their patients used external laboratories for routine testing. Few programs (19%) received most external laboratory results as discrete data via electronic interfaces while most (80%) manually entered laboratory results into the EHR; less than half (42%) could integrate internal and external laboratory results. Nearly all programs had guidelines regarding pre-specified target ranges (92%) or testing schedules (97%) for managing immunosuppressive care. Few programs used computerized alerting to notify transplant coordinators of out-of-range (27%) or overdue laboratory results (20%). Use of EHRs is common, yet all liver transplant programs were largely
Grant support has been well used by the University of Florida as host institution to support various educational institutions in the use of the reactor and associated facilities as indicated in the proposal. These various educational institutions are located primarily within Florida. However, when the 600-mile distance from Pensacola to Miami is considered, it is obvious that this Grant provides access to reactor utilization for a broad geographical region and a diverse set of user institutions serving over twelve million inhabitants throughout the State of Florida and still others throughout the nation. All users and uses were carefully screened to assure the usage was for educational institutions eligible for participation in the Reactor Sharing Program; where research activities were involved, care was taken to assure the research activities were not funded by grants for contract funding from outside sources. In some cases external grant funding is limited or is used up, in which case the Reactor Sharing Grant and frequent cost sharing by the UFTR facility and the University of Florida provide the necessary support to complete a project or to provide more results to make a complete project even better. In some cases this latter usage has aided renewal of external funding. The role of the Reactor Sharing Program, though relatively small in dollars, has been the single most important occurrence in assuring the rebirth and continued high utilization of the UFTR in a time when many better equipped and better placed facilities have ceased operations. Through dedicated and effective advertising efforts, the UFTR has seen nearly every four-year college and university in Florida make substantive use of the facility under the Reactor Sharing Program with many now regular users. Some have even been able to support usage from outside grants where the Reactor Sharing Grant has served as seed money; still others have been assisted when external grants were depleted
McCoy, Sandra I; Strauss, Ronald P; MacDonald, Pia D M; Leone, Peter A; Eron, Joseph J; Miller, William C
Many adults in the USA enter primary care late in the course of HIV infection, countering the clinical benefits of timely HIV services and missing opportunities for risk reduction. Our objective was to determine if perceived social support was associated with delay entering care after an HIV diagnosis. Two hundred and sixteen patients receiving primary care at a large, university-based HIV outpatient clinic in North Carolina were included in the study. Dimensions of functional social support (emotional/informational, tangible, affectionate, and positive social interaction) were quantified with a modified Medical Outcomes Study Social Support Scale and included in proportional hazards models to determine their effect on delays seeking care. The median delay between diagnosis and entry to primary care was 5.9 months. Levels of social support were high but only positive social interaction was moderately associated with delayed presentation in adjusted models. The effect of low perceived positive social interaction on the time to initiation of primary care differed by history of alcoholism (no history of alcoholism, hazard ratio (HR): 1.43, 95% confidence interval (CI): 0.88, 2.34; history of alcoholism, HR: 0.71, 95% CI: 0.40, 1.28). Ensuring timely access to HIV care remains a challenge in the southeastern USA. Affectionate, tangible, and emotional/informational social support were not associated with the time from diagnosis to care. The presence of positive social interaction may be an important factor influencing care-seeking behavior after diagnosis.
Full Text Available Abstract Background There is considerable interest today in shared decision-making (SDM, defined as a decision-making process jointly shared by patients and their health care provider. However, the data show that SDM has not been broadly adopted yet. Consequently, the main goal of this proposal is to bring together the resources and the expertise needed to develop an interdisciplinary and international research team on the implementation of SDM in clinical practice using a theory-based dyadic perspective. Methods Participants include researchers from Canada, US, UK, and Netherlands, representing medicine, nursing, psychology, community health and epidemiology. In order to develop a collaborative research network that takes advantage of the expertise of the team members, the following research activities are planned: 1 establish networking and on-going communication through internet-based forum, conference calls, and a bi-weekly e-bulletin; 2 hold a two-day workshop with two key experts (one in theoretical underpinnings of behavioral change, and a second in dyadic data analysis, and invite all investigators to present their views on the challenges related to the implementation of SDM in clinical practices; 3 conduct a secondary analyses of existing dyadic datasets to ensure that discussion among team members is grounded in empirical data; 4 build capacity with involvement of graduate students in the workshop and online forum; and 5 elaborate a position paper and an international multi-site study protocol. Discussion This study protocol aims to inform researchers, educators, and clinicians interested in improving their understanding of effective strategies to implement shared decision-making in clinical practice using a theory-based dyadic perspective.
Full Text Available Background. Self-management support and team-based care are essential elements of the Chronic Care Model but are often limited by staff availability and reimbursement. Mobile phones are a promising platform for improving chronic care but there are few examples of successful health system implementation. Program Development. An iterative process of program design was built upon a pilot study and engaged multiple institutional stakeholders. Patients identified having a “human face” to the pilot program as essential. Stakeholders recognized the need to integrate the program with primary and specialty care but voiced concerns about competing demands on clinician time. Program Description. Nurse administrators at a university-affiliated health plan use automated text messaging to provide personalized self-management support for member patients with diabetes and facilitate care coordination with the primary care team. For example, when a patient texts a request to meet with a dietitian, a nurse-administrator coordinates with the primary care team to provide a referral. Conclusion. Our innovative program enables the existing health system to support a de novo care management program by leveraging mobile technology. The program supports self-management and team-based care in a way that we believe engages patients yet meets the limited availability of providers and needs of health plan administrators.
William CS CHO
Full Text Available Complementary and alternative medicine has been increasingly utilized by cancer patients in developed countries. Among the various forms of complementary and alternative medicine, Traditional Chinese Medicine is one of the few that has a well constructed theoretical framework and established treatment approaches for diseases including cancer. Recent research has revealed growing evidence suggesting that Traditional Chinese Medicine is effective in the supportive care of cancer patients during and after major conventional cancer treatments. This paper succinctly summarizes some published clinical evidence and meta-analyses which support the usage of various Traditional Chinese Medicine treatment strategies including Chinese herbal medicine, acupuncture and Qigong in supportive cancer care.
Draper, Kevin; Gourevitch, Rebecca; Cross, Dori A.; Scholle, Sarah Hudson
Objective Consensus that enhanced teamwork is necessary for efficient and effective primary care delivery is growing. We sought to identify how electronic health records (EHRs) facilitate and pose challenges to primary care teams as well as how practices are overcoming these challenges. Methods Practices in this qualitative study were selected from those recognized as patient-centered medical homes via the National Committee for Quality Assurance 2011 tool, which included a section on practice teamwork. We interviewed 63 respondents, ranging from physicians to front-desk staff, from 27 primary care practices ranging in size, type, geography, and population size. Results EHRs were found to facilitate communication and task delegation in primary care teams through instant messaging, task management software, and the ability to create evidence-based templates for symptom-specific data collection from patients by medical assistants and nurses (which can offload work from physicians). Areas where respondents felt that electronic medical record EHR functionalities were weakest and posed challenges to teamwork included the lack of integrated care manager software and care plans in EHRs, poor practice registry functionality and interoperability, and inadequate ease of tracking patient data in the EHR over time. Discussion Practices developed solutions for some of the challenges they faced when attempting to use EHRs to support teamwork but wanted more permanent vendor and policy solutions for other challenges. Conclusions EHR vendors in the United States need to work alongside practicing primary care teams to create more clinically useful EHRs that support dynamic care plans, integrated care management software, more functional and interoperable practice registries, and greater ease of data tracking over time. PMID:25627278
O'Malley, Ann S; Draper, Kevin; Gourevitch, Rebecca; Cross, Dori A; Scholle, Sarah Hudson
Consensus that enhanced teamwork is necessary for efficient and effective primary care delivery is growing. We sought to identify how electronic health records (EHRs) facilitate and pose challenges to primary care teams as well as how practices are overcoming these challenges. Practices in this qualitative study were selected from those recognized as patient-centered medical homes via the National Committee for Quality Assurance 2011 tool, which included a section on practice teamwork. We interviewed 63 respondents, ranging from physicians to front-desk staff, from 27 primary care practices ranging in size, type, geography, and population size. EHRs were found to facilitate communication and task delegation in primary care teams through instant messaging, task management software, and the ability to create evidence-based templates for symptom-specific data collection from patients by medical assistants and nurses (which can offload work from physicians). Areas where respondents felt that electronic medical record EHR functionalities were weakest and posed challenges to teamwork included the lack of integrated care manager software and care plans in EHRs, poor practice registry functionality and interoperability, and inadequate ease of tracking patient data in the EHR over time. Practices developed solutions for some of the challenges they faced when attempting to use EHRs to support teamwork but wanted more permanent vendor and policy solutions for other challenges. EHR vendors in the United States need to work alongside practicing primary care teams to create more clinically useful EHRs that support dynamic care plans, integrated care management software, more functional and interoperable practice registries, and greater ease of data tracking over time. © The Author 2015. Published by Oxford University Press on behalf of the American Medical Informatics Association.
Cheah, Whye Lian; Ling, Ngok Chuo; Chang, Kam Hock
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.
Brown, Michael A.
The current Johnson Space Center (JSC) Mission Control Center (MCC) Video Transport System (VTS) provides flight controllers and management the ability to meld raw video from various sources with telemetry to improve situational awareness. However, maintaining a separate infrastructure for video delivery and integration of video content with data adds significant complexity and cost to the system. When considering alternative architectures for a VTS, the current system's ability to share specific computer displays in their entirety to other locations, such as large projector systems, flight control rooms, and back supporting rooms throughout the facilities and centers must be incorporated into any new architecture. Internet Protocol (IP)-based systems also support video delivery and integration. IP-based systems generally have an advantage in terms of cost and maintainability. Although IP-based systems are versatile, the task of sharing a computer display from one workstation to another can be time consuming for an end-user and inconvenient to administer at a system level. The objective of this paper is to present a prototype display sharing enterprise solution. Display sharing is a system which delivers image sharing across the LAN while simultaneously managing bandwidth, supporting encryption, enabling recovery and resynchronization following a loss of signal, and, minimizing latency. Additional critical elements will include image scaling support, multi -sharing, ease of initial integration and configuration, integration with desktop window managers, collaboration tools, host and recipient controls. This goal of this paper is to summarize the various elements of an IP-based display sharing system that can be used in today's control center environment.
Beck, Anne Marie; Gøgsig Christensen, Annette; Stenbæk Hansen, Birthe
Objective To assess the effect of multidisciplinary nutritional support for undernutrition in older adults in nursing home and home-care identified with the validated Eating Validation Scheme (EVS). Methods An 11 wk cluster randomized trial with a home-care (3 clusters) or nursing home (3 clusters.......3] versus 1.3 [0.5], P = 0.021) was observed. There was a almost significant difference in mortality (2% versus 13%, P = 0.079). Conclusions Multidisciplinary nutritional support in older adults in nursing home and home-care could have a positive effect on quality of life, muscle strength, and oral care....... means of EuroQol-5D-3L), physical performance (30-seconds chair stand), nutritional status (weight and hand-grip strength), oral care, fall incidents, hospital admissions, rehabilitation stay, moving to nursing homes (participants from home-care), and mortality. Results Respectively, 55 (46 from 2 home...
Full Text Available Type 2 diabetes mellitus is a major public health problem with many elements, such as self-care and social support, that could be interacting with its evolution. Nevertheless, there is no evidence of association between these two elements. Thus, this study aims to determine the relationship between medical, nutritional and physical activity self-care, perceived social support and duration of the disease. A cross-sectional Study was conducted on 126 people with diabetes with a mean age of 55 (±10.4 years old. The Summary of Diabetes Self-Care Activities Scale and the Medical Outcomes Study (MOS Social Support Survey were applied. Social support, specifically the instrumental one, may generate negative effects by limiting self-care behavior of a person. Based on these findings, it is possible to conclude that social support does not always turn out to be beneficial for people: having more instrumental support generates dependency and no responsibility on the diet.
The purpose of the study was two-fold: (1) to examine the relationships among self-care, social support, and quality of life in adult cancer patients receiving radiotherapy while the selected basic conditioning factors of age, marital and socio-economic status, living arrangement, stage and site of cancer were statistically controlled; and (2) to test a theoretical model which postulated that (a) quality of life was predicted jointly by the selected basic conditioning factors, social support and self-care, and (b) self-care was predicted jointly by the selected basic conditioning factors and social support. A convenience sample of 112 adult cervical and head/neck cancer patients receiving radiotherapy was obtained from radiotherapy outpatient clinic in three hospitals located in Bangkok, Thailand. Results of the study indicated positive relationships among self-care, social support, and quality of life. Socio-economic status, site of cancer, and self-care were significant predictors for reported quality of life. Social support appeared to be a significant predictor of quality of life indirectly through self-care. Socio-economic status and social support were also significant predictors of self-care, whereas, stage and site of cancer seemed to predict self-care indirectly through social support
Kane, Heather L; Halpern, Michael T; Squiers, Linda B; Treiman, Katherine A; McCormack, Lauren A
Engaging individuals with cancer in decision making about their treatments has received increased attention; shared decision making (SDM) has become a hallmark of patient-centered care. Although physicians indicate substantial interest in SDM, implementing SDM in cancer care is often complex; high levels of uncertainty may exist, and health care providers must help patients understand the potential risks versus benefits of different treatment options. However, patients who are more engaged in their health care decision making are more likely to experience confidence in and satisfaction with treatment decisions and increased trust in their providers. To implement SDM in oncology practice, physicians and other health care providers need to understand the components of SDM and the approaches to supporting and facilitating this process as part of cancer care. This review summarizes recent information regarding patient and physician factors that influence SDM for cancer care, outcomes resulting from successful SDM, and strategies for implementing SDM in oncology practice. We present a conceptual model illustrating the components of SDM in cancer care and provide recommendations for facilitating SDM in oncology practice. © 2014 American Cancer Society, Inc.
Bäckström, Caroline A; Mårtensson, Lena B; Golsäter, Marie H; Thorstensson, Stina A
Pregnant women are not always satisfied with the professional support they receive during their midwifery care. More knowledge is needed to understand what professional support pregnant women need for childbirth and parenting. Childbearing and the transition to becoming a parent is a sensitive period in one's life during which one should have the opportunity to receive professional support. Professional support does not always correspond to pregnant women's needs. To understand pregnant women's needs for professional support within midwifery care, it is crucial to further illuminate women's experiences of this support. To explore pregnant women's perceptions of professional support in midwifery care. A qualitative study using semi-structured interviews. Fifteen women were interviewed during gestational weeks 36-38. Data was analysed using phenomenography. The women perceived professional support in midwifery care to be reassuring and emotional, to consist of reliable information, and to be mediated with pedagogical creativity. The professional support facilitated new social contacts, partner involvement and contributed to mental preparedness. The findings of the study were presented in six categories and the category Professional support contributes to mental preparedness was influenced by the five other categories. Pregnant women prepare for childbirth and parenting by using several different types of professional support in midwifery care: a strategy that could be described as piecing together a puzzle. When the women put the puzzle together, each type of professional support works as a valuable piece in the whole puzzle. Through this, professional support could contribute to women's mental preparedness for childbirth and parenting. Copyright © 2016 Australian College of Midwives. Published by Elsevier Ltd. All rights reserved.
... For Parents / Taking Care of You: Support for Caregivers What's in this article? The Caregiver's Dilemma Tips for Caregivers More Tips Getting Help ... there are moments when the sheer magnitude of what you're up against is so ... not alone. The Caregiver's Dilemma When you're the caregiver of a ...
Huang, F.; Bacon, J.; Mapp, G.
Conventional storage management systems provide one interface for accessing memory segments and another for accessing secondary storage objects. This hinders application programming and affects overall system performance due to mandatory data copying and user/kernel boundary crossings, which in the microkernel case may involve context switches. Memory-mapping techniques may be used to provide programmers with a unified view of the storage system. This paper extends such techniques to support a shared data object model for distributed computing environments in which good support for coherence and synchronization is essential. The approach is based on a microkernel, typed memory objects, and integrated coherence control. A microkernel architecture is used to support multiple coherence protocols and the addition of new protocols. Memory objects are typed and applications can choose the most suitable protocols for different types of object to avoid protocol mismatch. Low-level coherence control is integrated with high-level concurrency control so that the number of messages required to maintain memory coherence is reduced and system-wide synchronization is realized without severely impacting the system performance. These features together contribute a novel approach to the support for flexible coherence under application control.
Brink-Muinen, A. van den; Spreeuwenberg, P.; Rijken, M.
OBJECTIVE: (1) To describe the importance chronically ill and disabled patients attach to involvement in decision-making when various care types are considered, and (2) to analyse the degree to which these patients are involved in shared decision-making (SDM) regarding these care types, and whether
Thybo Pihl, Gitte
BCG-vaccination of newborns – a descriptive study about shared decision making and decisional conflicts Objective: To evaluate the use of shared decision making to support the parent in a low-evidence decision about a vaccine when using telephone consultations. The present study was conducted........ The principles included promoting trust through transparency and creating “shared minds” regarding uncertainties about the evidence. O’Connor’s Decisional Conflict Scale was used to identify decisional conflicts after the process of shared decision making. Findings: A decisional conflict score was obtained...... on the phone based on their need and wishes, this uncertainty about the best choice might reflect the principle of letting parents make an autonomous decision in combination with low evidence for the benefits of BCG. The process of sharing responsibility and the impact of the health care providers’ attitude...
Jenkins, Karen; McManus, Breeda; Gracey, Brian
Introduction. This qualitative descriptive study was designed to understand the experiences of older people (>70 years) when making a decision about renal replacement therapy. This was a coproduced study, whereby patients and carers were involved in all aspects of the research process. Methods. A Patient and Carer Group undertook volunteer and research training. The group developed the interview questions and interviewed 29 people who had commenced dialysis or made a decision not to have dialysis. Interview data were transcribed and analysed, and common themes were identified. Results. 22 men and 7 women (mean age 77.4 yrs) from two hospitals were interviewed. 18 had chosen haemodialysis, 6 peritoneal dialysis, and 5 supportive care. The majority of patients were involved in the dialysis decision. Most were satisfied with the amount of information that they received, although some identified that the quality of the information could be improved, especially how daily living can be affected by dialysis. Conclusion. Our findings show that overall older patients were involved in the dialysis decision along with their families. Our approach is innovative because it is the first time that patients and carers have been involved in a coproduced study about shared decision-making. PMID:27990438
Kim, Katherine K; Sankar, Pamela; Wilson, Machelle D; Haynes, Sarah C
Robust technology infrastructure is needed to enable learning health care systems to improve quality, access, and cost. Such infrastructure relies on the trust and confidence of individuals to share their health data for healthcare and research. Few studies have addressed consumers' views on electronic data sharing and fewer still have explored the dual purposes of healthcare and research together. The objective of the study is to explore factors that affect consumers' willingness to share electronic health information for healthcare and research. This study involved a random-digit dial telephone survey of 800 adult Californians conducted in English and Spanish. Logistic regression was performed using backward selection to test for significant (p-value ≤ 0.05) associations of each explanatory variable with the outcome variable. The odds of consent for electronic data sharing for healthcare decreased as Likert scale ratings for EHR impact on privacy worsened, odds ratio (OR) = 0.74, 95% CI [0.60, 0.90]; security, OR = 0.80, 95% CI [0.66, 0.98]; and quality, OR = 0.59, 95% CI [0.46-0.75]. The odds of consent for sharing for research was greater for those who think EHR will improve research quality, OR = 11.26, 95% CI [4.13, 30.73]; those who value research benefit over privacy OR = 2.72, 95% CI [1.55, 4.78]; and those who value control over research benefit OR = 0.49, 95% CI [0.26, 0.94]. Consumers' choices about electronically sharing health information are affected by their attitudes toward EHRs as well as beliefs about research benefit and individual control. Design of person-centered interventions utilizing electronically collected health information, and policies regarding data sharing should address these values of importance to people. Understanding of these perspectives is critical for leveraging health data to support learning health care systems.
Woodhead, Erin L; Northrop, Lynn; Edelstein, Barry
Long-term care nursing staff are subject to considerable occupational stress and report high levels of burnout, yet little is known about how stress and social support are associated with burnout in this population. The present study utilized the job demands-resources model of burnout to examine relations between job demands (occupational and personal stress), job resources (sources and functions of social support), and burnout in a sample of nursing staff at a long-term care facility (N = 250). Hierarchical linear regression analyses revealed that job demands (greater occupational stress) were associated with more emotional exhaustion, more depersonalization, and less personal accomplishment. Job resources (support from supervisors and friends or family members, reassurance of worth, opportunity for nurturing) were associated with less emotional exhaustion and higher levels of personal accomplishment. Interventions to reduce burnout that include a focus on stress and social support outside of work may be particularly beneficial for long-term care staff. © The Author(s) 2014.
Smith, R; Hiatt, H; Berwick, D
Health care delivery in many countries has expanded over the past 150 years from a largely social service delivered by individual practitioners to an intricate network of services provided by teams of professionals. The problems of increasing resource consumption, financial constraints, complexity, and poor system design that have emerged as consequences of these changes have exacerbated many of the ethical tensions inherent in health care and have created new ones. Many groups of professionals that give and affect health care have established separate codes of ethics for their own disciplines, but no shared code exists that might bring all stakeholders in health care into a more consistent moral framework. A multidisciplinary group therefore recently met at Tavistock Square in London in an effort to prepare such a shared code. The result was not a code but a more basic and generic statement of ethical principles. The intent and hope is that it will offer clear guidance for tough calls in real world settings. It is presented here not as a finished work, but as a draft to elicit comment, critique, suggestions for revision, and, especially, ideas for implementation.
Full Text Available This study estimates the effects of a prospective payment system on the growth of for-profit hospitals. The empirical results show that the proportion of patient care paid for by Medicare managed care has a positive, statistically significant relationship with the market share of for-profit hospitals. Medicare managed care reimburses health care providers prospectively, and a larger portion of prospective reimbursements is received by for-profit hospitals, whose market share consequently increases. In addition, the proportion of patients with Medi-Cal and third party managed care has a positive, statistically significant relationship with the market share of for-profit hospitals.
Hsu, Lewis L.; Green, Nancy S.; Ivy, E. Donnell; Neunert, Cindy; Smaldone, Arlene; Johnson, Shirley; Castillo, Sheila; Castillo, Amparo; Thompson, Trevor; Hampton, Kisha; Strouse, John J.; Stewart, Rosalyn; Hughes, TaLana; Banks, Sonja; Smith-Whitley, Kim; King, Allison; Brown, Mary; Ohene-Frempong, Kwaku; Smith, Wally R.; Martin, Molly
Community health workers are increasingly recognized as useful for improving health care and health outcomes for a variety of chronic conditions. Community health workers can provide social support, navigation of health systems and resources, and lay counseling. Social and cultural alignment of community health workers with the population they serve is an important aspect of community health worker intervention. Although community health worker interventions have been shown to improve patient-centered outcomes in underserved communities, these interventions have not been evaluated with sickle cell disease. Evidence from other disease areas suggests that community health worker intervention also would be effective for these patients. Sickle cell disease is complex, with a range of barriers to multifaceted care needs at the individual, family/friend, clinical organization, and community levels. Care delivery is complicated by disparities in health care: access, delivery, services, and cultural mismatches between providers and families. Current practices inadequately address or provide incomplete control of symptoms, especially pain, resulting in decreased quality of life and high medical expense. The authors propose that care and care outcomes for people with sickle cell disease could be improved through community health worker case management, social support, and health system navigation. This report outlines implementation strategies in current use to test community health workers for sickle cell disease management in a variety of settings. National medical and advocacy efforts to develop the community health workforce for sickle cell disease management may enhance the progress and development of “best practices” for this area of community-based care. PMID:27320471
Vuik, Sabine I; Mayer, Erik K; Darzi, Ara
Integrated care aims to organize care around the patient instead of the provider. It is therefore crucial to understand differences across patients and their needs. Segmentation analysis that uses big data can help divide a patient population into distinct groups, which can then be targeted with care models and intervention programs tailored to their needs. In this article we explore the potential applications of patient segmentation in integrated care. We propose a framework for population strategies in integrated care-whole populations, subpopulations, and high-risk populations-and show how patient segmentation can support these strategies. Through international case examples, we illustrate practical considerations such as choosing a segmentation logic, accessing data, and tailoring care models. Important issues for policy makers to consider are trade-offs between simplicity and precision, trade-offs between customized and off-the-shelf solutions, and the availability of linked data sets. We conclude that segmentation can provide many benefits to integrated care, and we encourage policy makers to support its use. Project HOPE—The People-to-People Health Foundation, Inc.
McCallum, I.; Plag, H. P.; Fritz, S.
Geo-referenced data are crucial for addressing many of the burning societal problems and to support related interdisciplinary research. Data sharing is hampered by the lack of a widely accepted method for giving credit to those who make their data freely available and for tracking the use of data throughout it's life-cycle. Particularly in the scientific community, recognition and renown are important currencies. Providing means for data citation would be a strong incentive for data sharing. Recently, a number of organizations and projects have started to address the concept of data citation (e.g., PANGAEA, NASA DAACS, USGS, NOAA National Data Centers, ESIP, US National Academy of Sciences, and EGIDA). A number of proposals for data citation guidelines have emerged and a better understanding of the many issues at hand is evolving, but to date, no standard has been accepted. This is not surprising, as data citation is far more complicated than citation of scientific publication. Data sets differ in many aspects from standard scientific publications. For example, data sets generally are not locatable and attributable in the same way as scientific publications. Data sets often are not static (introducing versioning), and they are mostly not peer-reviewed (requiring quality control). There is a consensus that the implementation of a standard would reveal new issues that are not obvious today. With the Global Earth Observation System of Systems (GEOSS), the Group on Earth Observations (GEO) is in a unique position to provide the testbed for the implementation of a draft standard. The GEO Plenary supports the implementation of a draft standard developed by the Science and Technology Committee (STC) of GEO with support of the EGIDA Project. This draft is based on guidelines developed by international groups. Currently, users of the GEO-Portal are not obliged or encouraged to cite data accessed through GEOSS - if at all, citation requirements come from the individual data
Sadigh, Gelareh; Carlos, Ruth C; Krupinski, Elizabeth A; Meltzer, Carolyn C; Duszak, Richard
The purpose of this article is to review the literature on communicating transparency in health care pricing, both overall and specifically for medical imaging. Focus is also placed on the imperatives and initiatives that will increasingly impact radiologists and their patients. Most Americans seek transparency in health care pricing, yet such discussions occur in fewer than half of patient encounters. Although price transparency tools can help decrease health care spending, most are used infrequently and most lack information about quality. Given the high costs associated with many imaging services, radiologists should be aware of such initiatives to optimize patient engagement and informed shared decision making.
Dutton, Julie; McCaskill, Kelly; Alton, Sarah; Levesley, Maria; Hemingway, Cath; Farndon, Lisa
Diabetes is a common long-term condition affecting many people many of whom require support with their insulin injections at home. These injections are often carried out by community nurses if individuals are unable to self-manage their condition. This paper describes a pilot project where health care support workers were trained to administer insulin at home for suitable patients. Four patients took part in the pilot study and two support workers were trained to give the insulin injections. The project was evaluated well by all those who took part. It freed up 80 hours of nursing time while also providing the support workers with an extended scope of practice and associated increased in job satisfaction. No untoward medication errors were reported as a result of this initiative. This project will now be rolled out to the wider nursing teams with a staggered approach to the delivery of the training to ensure there is not a detrimental effect on patient care.
Abstract Several countries with highly ranked delivery systems have implemented locally-based, publicly-funded primary health care organizations (PHCOs) as vehicles to strengthen their primary care foundations. In the United States, state governments have started down a similar pathway with models that share similarities with international PHCOs. The objective of this study was to determine if these kinds of organizations were working with primary care practices to improve their ability to pr...
Design goals and design directions are formulated for the (digital) support of non-technical nursing tasks and skills in the intensive care unit (ICU), such as organizing work, evaluating care, coping with stress and dealing with poor team dynamics. A conceptual framework for ICU nursing was
Perneger, Thomas V; Hudelson, Patricia M
The purpose of this study was to identify factors associated with the public's preference for financing health care according to people's ability to pay. The authors compared voters' support in 26 Swiss cantons for a legislative proposal to replace regionally rated health insurance premiums (current system) with premiums proportional to income and wealth, and co-financed through the value added tax. The vote took place in May 2003, and the initiative was rejected, with only 27 percent of support nationwide. However, support varied more than threefold, from 13 to 44 percent, among cantons. In multivariate analysis, support was most strongly correlated with the approval rate of the 1994 law on health insurance, which strengthened solidarity between the sick and the healthy. More modest associations were seen between support for the initiative and the health insurance premium of 2003, and proportions of elderly and urban residents in the population. Hence support for more social financing of health care was best explained by past preference for a social health insurance system in the local community.
Tarboton, D. G.; Idaszak, R.; Horsburgh, J. S.; Ames, D. P.; Goodall, J. L.; Band, L. E.; Merwade, V.; Couch, A.; Hooper, R. P.; Maidment, D. R.; Dash, P. K.; Stealey, M.; Yi, H.; Gan, T.; Castronova, A. M.; Miles, B.; Li, Z.; Morsy, M. M.
HydroShare is an online, collaborative system for open sharing of hydrologic data, analytical tools, and models. It supports the sharing of and collaboration around "resources" which are defined primarily by standardized metadata, content data models for each resource type, and an overarching resource data model based on the Open Archives Initiative's Object Reuse and Exchange (OAI-ORE) standard and a hierarchical file packaging system called "BagIt". HydroShare expands the data sharing capability of the CUAHSI Hydrologic Information System by broadening the classes of data accommodated to include geospatial and multidimensional space-time datasets commonly used in hydrology. HydroShare also includes new capability for sharing models, model components, and analytical tools and will take advantage of emerging social media functionality to enhance information about and collaboration around hydrologic data and models. It also supports web services and server/cloud based computation operating on resources for the execution of hydrologic models and analysis and visualization of hydrologic data. HydroShare uses iRODS as a network file system for underlying storage of datasets and models. Collaboration is enabled by casting datasets and models as "social objects". Social functions include both private and public sharing, formation of collaborative groups of users, and value-added annotation of shared datasets and models. The HydroShare web interface and social media functions were developed using the Django web application framework coupled to iRODS. Data visualization and analysis is supported through the Tethys Platform web GIS software stack. Links to external systems are supported by RESTful web service interfaces to HydroShare's content. This presentation will introduce the HydroShare functionality developed to date and describe ongoing development of functionality to support collaboration and integration of data and models.
Emerencia, Ando C; Boonstra, Nynke; Wunderink, Lex; de Jonge, Peter; Sytema, Sjoerd
Background Mental health policy makers encourage the development of electronic decision aids to increase patient participation in medical decision making. Evidence is needed to determine whether these decision aids are helpful in clinical practice and whether they lead to increased patient involvement and better outcomes. Objective This study reports the outcome of a randomized controlled trial and process evaluation of a Web-based intervention to facilitate shared decision making for people with psychotic disorders. Methods The study was carried out in a Dutch mental health institution. Patients were recruited from 2 outpatient teams for patients with psychosis (N=250). Patients in the intervention condition (n=124) were provided an account to access a Web-based information and decision tool aimed to support patients in acquiring an overview of their needs and appropriate treatment options provided by their mental health care organization. Patients were given the opportunity to use the Web-based tool either on their own (at their home computer or at a computer of the service) or with the support of an assistant. Patients in the control group received care as usual (n=126). Half of the patients in the sample were patients experiencing a first episode of psychosis; the other half were patients with a chronic psychosis. Primary outcome was patient-perceived involvement in medical decision making, measured with the Combined Outcome Measure for Risk Communication and Treatment Decision-making Effectiveness (COMRADE). Process evaluation consisted of questionnaire-based surveys, open interviews, and researcher observation. Results In all, 73 patients completed the follow-up measurement and were included in the final analysis (response rate 29.2%). More than one-third (48/124, 38.7%) of the patients who were provided access to the Web-based decision aid used it, and most used its full functionality. No differences were found between the intervention and control conditions
Rigby, Michael; Hill, Penny; Koch, Sabine; Keeling, Debbie
The authors identified the need for a cross-disciplinary research view of issues to ensure an integrated citizen-centric support to achieve optimal health of individual citizens and, in particular, the role of informatics to inform and coordinate support towards integrated and holistic care. An Exploratory Workshop was approved and sponsored by the European Science Foundation. Twenty-three participants from 15 countries attended, covering a full range of health, social care and informatics professions and disciplines. The participants found strong common ground in identifying key issues to be addressed if citizens with compromised health are to receive integrated and coordinated support to a common set of objectives, while also ensuring appropriate choice and support for citizen, family and other informal carers. At the same time, optimal health was identified as a fundamental human right, and that achieving this is a necessary priority of a caring society. Moreover, Europe has a commitment to researching and developing health informatics (e-health), though not yet giving a priority to this integration of health and social care. Specifically the following main informatics challenges to be addressed were identified: (1) to identify available information and communication needs related to different scenarios of use in the intersection between health and social care, (2) to develop and map shared ontologies, and standards for integration and/or brokerage, (3) to enable planned information access and sharing, shaping a system of trust where the patient is an active partner and policies are established considering all partners/interests, (4) to investigate the use of automatic/intelligent knowledge based and context-relevant services, and (5) empowering the citizen (or their selected agent) as co-producer through modern informatics tools, while carefully avoiding selective disempowerment of the most vulnerable. The Exploratory Workshop resulted in a unanimous
Kirk, S; Fallon, D; Fraser, C; Robinson, G; Vassallo, G
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
Dagliati, Arianna; Sacchi, Lucia; Tibollo, Valentina; Cogni, Giulia; Teliti, Marsida; Martinez-Millana, Antonio; Traver, Vicente; Segagni, Daniele; Posada, Jorge; Ottaviano, Manuel; Fico, Giuseppe; Arredondo, Maria Teresa; De Cata, Pasquale; Chiovato, Luca; Bellazzi, Riccardo
To describe the development, as part of the European Union MOSAIC (Models and Simulation Techniques for Discovering Diabetes Influence Factors) project, of a dashboard-based system for the management of type 2 diabetes and assess its impact on clinical practice. The MOSAIC dashboard system is based on predictive modeling, longitudinal data analytics, and the reuse and integration of data from hospitals and public health repositories. Data are merged into an i2b2 data warehouse, which feeds a set of advanced temporal analytic models, including temporal abstractions, care-flow mining, drug exposure pattern detection, and risk-prediction models for type 2 diabetes complications. The dashboard has 2 components, designed for (1) clinical decision support during follow-up consultations and (2) outcome assessment on populations of interest. To assess the impact of the clinical decision support component, a pre-post study was conducted considering visit duration, number of screening examinations, and lifestyle interventions. A pilot sample of 700 Italian patients was investigated. Judgments on the outcome assessment component were obtained via focus groups with clinicians and health care managers. The use of the decision support component in clinical activities produced a reduction in visit duration (P ≪ .01) and an increase in the number of screening exams for complications (P < .01). We also observed a relevant, although nonstatistically significant, increase in the proportion of patients receiving lifestyle interventions (from 69% to 77%). Regarding the outcome assessment component, focus groups highlighted the system's capability of identifying and understanding the characteristics of patient subgroups treated at the center. Our study demonstrates that decision support tools based on the integration of multiple-source data and visual and predictive analytics do improve the management of a chronic disease such as type 2 diabetes by enacting a successful
Malucelli, Andreia; Otemaier, Kelly Rafaela; Bonnet, Marcel; Cubas, Marcia Regina; Garcia, Telma Ribeiro
It is an unquestionable fact, the importance, relevance and necessity of implementing the Nursing Care Systematization in the different environments of professional practice. Considering it as a principle, emerged the motivation for the development of an information system to support the Nursing Care Systematization, based on Nursing Process steps and Human Needs, using the diagnoses language, nursing interventions and outcomes for professional practice documentation. This paper describes the methodological steps and results of the information system development - requirements elicitation, modeling, object-relational mapping, implementation and system validation.
Verver, Didi; Merten, Hanneke; Robben, Paul; Wagner, Cordula
The growth in the numbers of older adults needing long-term care has resulted in rising costs which have forced the Dutch government to change its long-term care system. Now, the local authorities have greater responsibility for supporting older adults and in prolonging independent living with increased support provided by the social network. However, it is unclear whether these older adults have such a network to rely upon. The objective of this study was to gain insight into the providers of formal and informal care to older adults, and to assess possible differences between older adults who are frail and those who are not. In addition, we investigated their care and support needs. We used data from a quantitative survey using a cross-sectional design in different regions of the Netherlands from July until September 2014 (n = 181). Frailty was measured using the Tilburg Frailty indicator. To analyse the data chi-square tests, crosstabs and odds ratios were used for dichotomous data and the Mann-Whitney U-Test for nominal data. The number of formal care providers involved was significantly higher (median = 2) for those deemed frail than for those not deemed frail (median = 1), U = 2,130, p older adults deemed to be frail did not have their needs sufficiently addressed by their care network. For a substantial part of this group of older adults, the informal network seems to be unable to support them sufficiently. Additional attention for their needs and wishes is required to implement the policy reforms successfully. © 2018 John Wiley & Sons Ltd.
Widener, Anmarie J.
Parental leave policies give parents a temporary leave from employment in order to care for a child. Secondary aims are to increase women’s attachment to the labour force as well as supporting gender equal roles in paid and unpaid work. This study researched parent satisfaction of parental leave
Dures, Emma; Almeida, Celia; Caesley, Judy; Peterson, Alice; Ambler, Nicholas; Morris, Marianne; Pollock, Jon; Hewlett, Sarah
The consequences of inflammatory arthritis can include depression, anxiety and low mood, reducing patients' quality of life and increasing pressure on the healthcare system. Treatment guidelines recommend psychological support, but data are lacking on the provision available. A postal survey concerning psychological support provision was sent to rheumatology units in 143 acute trusts across England. Nurses from 73 rheumatology units (51%) responded. Overall, 73% rated their unit's psychological support provision as 'inadequate' and only 4% rated it as 'good'. Few units believed that psychological support did not fall within their remit (12%), yet only 8% had a psychologist in the team. Most units (68%) did not routinely screen patients to identify psychological difficulties. Referral to other service providers was reported in 42% of units, with 3% very satisfied with this provision. Within units, services containing elements of psychological support ranged from occupational therapy (81%) to psychology/counselling (14%). Psychological approaches used by team members ranged from shared decision making (77%) to cognitive-behavioural approaches (26%). The current barriers to providing psychological support were lack of clinical time and available training (86% and 74%, respectively), and delivery costs (74%). Future facilitators included management support (74%) and availability of skills training (74%). Rheumatology units viewed psychological support provision as part of their remit but rated their overall provision as inadequate, despite some team members using psychological skills. To improve provision, clinicians' training needs must be addressed and organizational support generated, and further research needs to define adequate psychological support provision from the patient perspective. © 2014 The Authors. Musculoskeletal Care published by John Wiley & Sons Ltd.
Cui, Yanyan; Gong, Dongwei; Yang, Bo; Chen, Hua; Tu, Ming-Hsiang; Zhang, Chaonan; Li, Huan; Liang, Naiwen; Jiang, Liping; Chang, Polun
Comprehensive Geriatric Assessments (CGAs) have been recommended to be used for better monitoring the health status of elder residents and providing quality care. This study reported how our nurses perceived the usability of CGA component of a mobile integrated-care long term care support system developed in China. We used the Continuity Assessment Record and Evaluation (CARE), developed in the US, as the core CGA component of our Android-based support system, in which apps were designed for all key stakeholders for delivering quality long term care. A convenience sample of 18 subjects from local long term care facilities in Shanghai, China were invited to assess the CGA assessment component in terms of Technology Acceptance Model for Mobile based on real field trial assessment. All (100%) were satisfied with the mobile CGA component. 88.9% perceived the system was easy to learn and use. 99.4% showed their willingness to use for their work. We concluded it is technically feasible to implement a CGA-based mobile integrated care support system in China.
Full Text Available The introduction of a national electronic health record system to the National Health Service (NHS has raised concerns about issues of data accuracy, security and confidentiality. The primary aim of this project was to identify the extent to which primary care patients will allow their local electronic record data to be shared on a national database. The secondary aim was to identify the extent of inaccuracies in the existing primary care records, which will be used to populate the new national Spine. Fifty consecutive attenders to one general practitioner were given a paper printout of their full primary care electronic health record. Participants were asked to highlight information which they would not want to be shared on the national electronic database of records, and information which they considered to be incorrect. There was a 62% response rate (31/50. Five of the 31 patients (16% identified information that they would not want to be shared on the national record system. The items they identified related almost entirely to matters of pregnancy, contraception, sexual health and mental health. Ten respondents (32% identified incorrect information in their records (some of these turned out to be correct on further investigation. The findings in relation to data sharing fit with the commonly held assumption that matters related to sensitive or embarrassing issues, which may affect how the patient will be treated by other individuals or institutions, are most likely to be censored by patients. Previous work on this has tended to ask hypothetical questions concerning data sharing rather than examine a real situation. A larger study of representative samples of patients in both primary and secondary care settings is needed to further investigate issues of data sharing and consent.
Collins, Sean P; Storrow, Alan B
Nearly 700,000 emergency department (ED) visits were due to acute heart failure (AHF) in 2009. Most visits result in a hospital admission and account for the largest proportion of a projected $70 billion to be spent on heart failure care by 2030. ED-based risk prediction tools in AHF rarely impact disposition decision making. This is a major factor contributing to the 80% admission rate for ED patients with AHF, which has remained unchanged over the last several years. Self-care behaviors such as symptom monitoring, medication taking, dietary adherence, and exercise have been associated with decreased hospital readmissions, yet self-care remains largely unaddressed in ED patients with AHF and thus represents a significant lost opportunity to improve patient care and decrease ED visits and hospitalizations. Furthermore, shared decision making encourages collaborative interaction between patients, caregivers, and providers to drive a care path based on mutual agreement. The observation that “difficult decisions now will simplify difficult decisions later” has particular relevance to the ED, given this is the venue for many such issues. We hypothesize patients as complex and heterogeneous as ED patients with AHF may need both an objective evaluation of physiologic risk as well as an evaluation of barriers to ideal self-care, along with strategies to overcome these barriers. Combining physician gestalt, physiologic risk prediction instruments, an evaluation of self-care, and an information exchange between patient and provider using shared decision making may provide the critical inertia necessary to discharge patients home after a brief ED evaluation.
Plaice, Caroline; Lloyd, Jon; Shaw, Pauline
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.
Ter Beek, Maurice H.; Gnesi, Stefania; Latella, Diego; Massink, Mieke
Public bike-sharing systems are a popular means of sustainable urban mobility, but their successful introduction in a city stands or falls with their specific designs. What kind of bikes and docking stations are needed, how many and where to install them? How to avoid as much as possible that stations are completely empty or full for some period? Hence, a bike-sharing system can be seen both as a highly (re)configurable system and as a collective adaptive system. In this paper, we present two...
Day, Carolina Baltar; Bierhals, Carla Cristiane Becker Kottwitz; Santos, Naiana Oliveira Dos; Mocellin, Duane; Predebon, Mariane Lurdes; Dal Pizzol, Fernanda Laís Fengler; Paskulin, Lisiane Manganelli Girardi
Family caregivers of aged stroke survivors face challenging difficulties such as the lack of support and the knowledge and skills to practice home care. These aspects negatively influence the caregivers' burden and quality of life, the use of health services, and hospital readmissions of the stroke survivor. The aim of this research is to describe an educational intervention focused on family caregivers of stroke survivors for the development of home care in the south of Brazil. A randomized clinical trial with 48 family caregivers of stroke survivors will be recruited and divided into two groups: 24 in the intervention group and 24 in the control group. The intervention will consist of the systematic follow-up by nurses who will perform three home visits over a period of 1 month. The control group will not receive the visits and will have the usual care guidelines of the health services. Primary outcomes: burden and quality of life of the caregiver. functional capacity and readmissions of the stroke survivors; the use of health services of the stroke survivors and their family caregivers. Outcomes will be measured 2 months after discharge. The project was approved in April 2016. This research offers information for conducting educational intervention with family caregivers of stroke survivors, presenting knowledge so that nurses can structure and plan the actions aimed at the education of the family caregiver. It is expected that the educational intervention will contribute to reducing caregiver burden and improving their quality of life, as well as avoiding readmissions and inadequate use of health services by stroke survivors. ClinicalTrials.gov, ID: NCT02807012 . Registered on 3 June 2016. Name: Nursing Home Care Intervention Post Stroke (SHARE).
Fiveash, Barb; Nay, Rhonda
The purpose of this study was to identify how healthcare clients achieve and maintain a sense of control over their health. The literature review conducted refers to: (i) key definitions of control, (ii) locus of control, and (iii) control and wellbeing. Participants with a range of acute and chronic health conditions and who had been hospitalised at some point were selected for the study. Symbolic interactionism (Blumer, 1969) and modified grounded theory of Strauss & Corbin (1998) provided the frameworks for this study. During the six month study period, data were collected from sixty participants and included interviews, participant observation, reviewing participants' records (nursing care plans, nursing notes and case histories), the nursing units' philosophy, organisational charts, policies and procedures, annual reports, consumer brochures and any other relevant information sources. Findings from the study indicated that participants moved from feeling vulnerable to having a sense of control through to being purposefully active. Vulnerability was associated with: (i) having limited choices in respect to their health, (ii) lacking adequate health information to make choices, (iii) being ignored by health providers with respect to their needs, and (iv) lacking friend/family supports. Purposefully activating was associated with three major categories: (i) reflecting, (ii) being self-determiningly involved and (iii) normalising. Findings from this study could be used by health care clients who want a sense of control over their health care, and also by health care providers who wish to support clients in the healthcare process.
Washington, Karla T; Oliver, Debra Parker; Gage, L Ashley; Albright, David L; Demiris, George
Much of the existing research on shared decision-making in hospice and palliative care focuses on the provider-patient dyad; little is known about shared decision-making that is inclusive of family members of patients with advanced disease. We sought to describe shared decision-making as it occurred in hospice interdisciplinary team meetings that included family caregivers as participants using video-conferencing technology. We conducted a multimethod study in which we used content and thematic analysis techniques to analyze video-recordings of hospice interdisciplinary team meetings (n = 100), individual interviews of family caregivers (n = 73) and hospice staff members (n = 78), and research field notes. Participants in the original studies from which data for this analysis were drawn were hospice family caregivers and staff members employed by one of five different community-based hospice agencies located in the Midwestern United States. Shared decision-making occurred infrequently in hospice interdisciplinary team meetings that included family caregivers. Barriers to shared decision-making included time constraints, communication skill deficits, unaddressed emotional needs, staff absences, and unclear role expectations. The hospice philosophy of care, current trends in healthcare delivery, the interdisciplinary nature of hospice teams, and the designation of a team leader/facilitator supported shared decision-making. The involvement of family caregivers in hospice interdisciplinary team meetings using video-conferencing technology creates a useful platform for shared decision-making; however, steps must be taken to transform family caregivers from meeting attendees to shared decision-makers. © The Author(s) 2015.
The Affordable Care Act is transforming American federalism and creating strain between the states and the federal government. By expanding the scale of intergovernmental health programs, creating new state requirements, and setting the stage for increased federal fiscal oversight, the act has disturbed an uneasy truce in American federalism. This article outlines a policy proposal designed to harness cooperative federalism, based on the shared state and federal desire to control health care cost growth. The proposal, which borrows features of the Medicare Shared Savings Program, would provide states with an incentive in the form of an increased share of the savings they generate in programs that have federal financial participation, as long as they meet defined performance standards.
Bourgarel, Sophie; Piteau-Delord, Monique
To analyse the logic for the distribution of home care services for disabled children (SESSAD) in a context of under-equipment. Questionnaire-based survey of 75 units (82% of the region's SESSAD units) concerning patient transport. Equipment and transport mapping. Support units for disabled children are often set up in the housing facilities that contributed to their creation. These sites are sometimes situated a long way from densely populated regions, thereby generating unnecessary travel times and expenses. Chronic under-equipment makes these sites viable, as the various units are always full, despite their distance from the children for whom they provide support. Mapping illustrates the extensive recruitment zones overlapping several units managing similar patients. The major revision of accreditation of these units, planned for 2017, could lead to redefinition of geographical zones of accreditations. New unit opening procedures based on ARS calls for tenders may help to improve the geographical distribution of this supportive care.
Taylor, Elizabeth Johnston; Gober-Park, Carla; Schoonover-Shoffner, Kathy; Mamier, Iris; Somaiya, Chintan K; Bahjri, Khaled
This study measured the frequency of nurse-provided spiritual care and how it is associated with various facets of nurse religiosity. Data were collected using an online survey accessed from the home page of the Journal of Christian Nursing. The survey included the Nurse Spiritual Care Therapeutics Scale, six scales quantifying facets of religiosity, and demographic and work-related items. Respondents ( N = 358) indicated high religiosity yet reported neutral responses to items about sharing personal beliefs and tentativeness of belief. Findings suggested spiritual care was infrequent. Multivariate analysis showed prayer frequency, employer support of spiritual care, and non-White ethnicity were significantly associated with spiritual care frequency (adjusted R 2 = .10). Results not only provide an indication of spiritual care frequency but empirical encouragement for nurse managers to provide a supportive environment for spiritual care. Findings expose the reality that nurse religiosity is directly related, albeit weakly, to spiritual care frequency.
Andreasson, Jörgen; Eriksson, Andrea; Dellve, Lotta
To develop a deeper understanding of health-care managers' views on and approaches to the implementation of models for improving care processes. In health care, there are difficulties in implementing models for improving care processes that have been decided on by upper management. Leadership approaches to this implementation can affect the outcome. In-depth interviews with first- and second-line managers in Swedish hospitals were conducted and analysed using grounded theory. 'Coaching for participation' emerged as a central theme for managers in handling top-down initiated process development. The vertical approach in this coaching addresses how managers attempt to sustain unit integrity through adapting and translating orders from top management. The horizontal approach in the coaching refers to managers' strategies for motivating and engaging their employees in implementation work. Implementation models for improving care processes require a coaching leadership built on close manager-employee interaction, mindfulness regarding the pace of change at the unit level, managers with the competence to share responsibility with their teams and engaged employees with the competence to share responsibility for improving the care processes, and organisational structures that support process-oriented work. Implications for nursing management are the importance of giving nurse managers knowledge of change management. © 2015 John Wiley & Sons Ltd.
Schäfer, Nicole; Karutz, Harald; Schenk, Olaf
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.
Nguyen, Nguyen Xuan; Sheingold, Steven H
The indirect medical education (IME) and disproportionate share hospital (DSH) adjustments to Medicare's prospective payment rates for inpatient services are generally intended to compensate hospitals for patient care costs related to teaching activities and care of low income populations. These adjustments were originally established based on the statistical relationships between IME and DSH and hospital costs. Due to a variety of policy considerations, the legislated levels of these adjustments may have deviated over time from these "empirically justified levels," or simply, "empirical levels." In this paper, we estimate the empirical levels of IME and DSH using 2006 hospital data and 2009 Medicare final payment rules. Our analyses suggest that the empirical level for IME would be much smaller than under current law-about one-third to one-half. Our analyses also support the DSH adjustment prescribed by the Affordable Care Act of 2010 (ACA)--about one-quarter of the pre-ACA level. For IME, the estimates imply an increase in costs of 1.88% for each 10% increase in teaching intensity. For DSH, the estimates imply that costs would rise by 0.52% for each 10% increase in the low-income patient share for large urban hospitals. Public Domain.
Carol S Bond
Full Text Available Background Peer-to-peer health care is increasing, especially amongst people living with a long-term condition. How information is shared is, however, sometimes of concern to health care professionals. Objective This study explored what information is being shared on health-related discussion boards and identified the approaches people used to signpost their peers to information. Methods This study was conducted using a qualitative content analysis methodology to explore information shared on discussion boards for people living with diabetes. Whilst there is debate about the best ethical lens to view research carried out on data posted on online discussion boards, the researchers chose to adopt the stance of treating this type of information as “personal health text”, a specific type of research data in its own right. Results Qualitative content analysis and basic descriptive statistics were used to analyse the selected posts. Two major themes were identified: ‘Information Sharing from Experience’ and ‘Signposting Other Sources of Information’. Conclusions People were actively engaging in information sharing in online discussion forums, mainly through direct signposting. The quality of the information shared was important, with reasons for recommendations being given. Much of the information sharing was based on experience, which also brought in information from external sources such as health care professionals and other acknowledged experts in the field. With the rise in peer-to-peer support networks, the nature of health knowledge and expertise needs to be redefined. People online are combining external information with their own personal experiences and sharing that for others to take and develop as they wish.
Saari, Margaret; Patterson, Erin; Kelly, Shawna; Tourangeau, Ann E
To meet increasing demand for home care, the role of personal support workers (PSWs) is shifting from providing primarily personal and supportive care to include care activities previously provided by regulated health professionals (RHPs). Much of the research examining this shift focuses on specialty programmes, with few studies investigating the daily care being provided by PSWs, frequency of care activities being provided by PSWs, and characteristics of the population receiving more complex tasks. Between January and April 2015, a review of 517 home-care service user charts was undertaken in Ontario, Canada, to: (1) describe the range of tasks being performed by PSWs in home care, (2) identify tasks transferred by RHPs to PSWs, and (3) examine characteristics of service users receiving transferred care. Findings indicate that normally, PSWs provide personal and supportive care commensurate with their training. However, in approximately one quarter of care plans reviewed, PSWs also completed more complex care activities transferred to them by RHPs. Service users receiving transferred care were older and had higher levels of cognitive and functional impairment. Although there is potential for the expansion of home-care services through increased utilisation of PSWs, healthcare leadership must ensure that the right provider is being utilised at the right time and in the right place to ensure safe and effective quality care. Thus, several actions are recommended: PSW core competencies be clearly articulated, processes used to transfer care activities from RHPs to PSWs be standardised and a team-based approach to the delivery of home-care services be considered. Utilisation of a team-based model can help establish positive relationships among home-care providers, provide increased support for PSWs, allow for easier scheduling of initial training and ensure regular reassessments of PSW competence among PSWs providing added skills. © 2017 John Wiley & Sons Ltd.
Hanson, Elizabeth; Magnusson, Lennart; Sennemark, Eva
This article describes an innovative practice called Blended Learning Networks (BLNs) whose aim is to enable older people, their families, and care providers to exchange knowledge, learn together, and support each other in local development work so that care is improved for older people. BLNs were established in 31 municipalities, headed up by a local facilitator. They were supported by a national themed network consisting of virtual meetings between local facilitators and national facilitators at the Swedish National Family Care Competence Centre. An evaluation was conducted to explore the utility of the BLNs so that any improvements to the model could be instigated. Focus group interviews were conducted with members of 9 BLNs, and self-evaluation questions were discussed in 16 BLNs. Limitations are that not all BLN members participated in the evaluation, and local facilitators conducting self-evaluations were not trained in focus group dynamics. Virtual focus groups were carried out with 26 of the 31 local facilitators and with the national facilitators. Participants reported an increased understanding of caregiver issues and of each group's roles. Of particular value were the stories shared by caregivers and the potential for change locally due to the involvement of decision makers. The practice demanded considerable skills of the local facilitators. An initial education for new local facilitators was deemed necessary. BLNs is a unique practice of community communications and knowledge transfer as it creates partnerships among all key stakeholder groups that act as a catalyst for improving care for older people.
Baloh, Jure; Zhu, Xi; Vaughn, Tom; MacKinney, A Clinton; Mueller, Keith J; Ullrich, Fred; Nattinger, Matthew
This Policy Brief presents characteristics contributing to the formation of four accountable care organizations (ACOs) that serve rural Medicare beneficiaries. Doing so provides considerations for provider organizations contemplating creating rural-based ACOs. Key Findings. (1) Previous organizational integration and risk-sharing experience facilitated ACO formation. (2) Use of an electronic health record system fostered core ACO capabilities, including care coordination and population health management. (3) Partnerships across the care continuum supported utilization of local health care resources.
Barwise, Amelia; Garcia-Arguello, Lisbeth; Dong, Yue; Hulyalkar, Manasi; Vukoja, Marija; Schultz, Marcus J; Adhikari, Neill K J; Bonneton, Benjamin; Kilickaya, Oguz; Kashyap, Rahul; Gajic, Ognjen; Schmickl, Christopher N
The Checklist for Early Recognition and Treatment of Acute Illness (CERTAIN) is an international collaborative project with the overall objective of standardizing the approach to the evaluation and treatment of critically ill patients world-wide, in accordance with best-practice principles. One of CERTAIN's key features is clinical decision support providing point-of-care information about common acute illness syndromes, procedures, and medications in an index card format. This paper describes 1) the process of developing and validating the content for point-of-care decision support, and 2) the content management system that facilitates frequent peer-review and allows rapid updates of content across different platforms (CERTAIN software, mobile apps, pdf-booklet) and different languages. Content was created based on survey results of acute care providers and validated using an open peer-review process. Over a 3 year period, CERTAIN content expanded to include 67 syndrome cards, 30 procedure cards, and 117 medication cards. 127 (59 %) cards have been peer-reviewed so far. Initially MS Word® and Dropbox® were used to create, store, and share content for peer-review. Recently Google Docs® was used to make the peer-review process more efficient. However, neither of these approaches met our security requirements nor has the capacity to instantly update the different CERTAIN platforms. Although we were able to successfully develop and validate a large inventory of clinical decision support cards in a short period of time, commercially available software solutions for content management are suboptimal. Novel custom solutions are necessary for efficient global point of care content system management.
Erdemir, Ahmet; Hunter, Peter J; Holzapfel, Gerhard A; Loew, Leslie M; Middleton, John; Jacobs, Christopher R; Nithiarasu, Perumal; Löhner, Rainlad; Wei, Guowei; Winkelstein, Beth A; Barocas, Victor H; Guilak, Farshid; Ku, Joy P; Hicks, Jennifer L; Delp, Scott L; Sacks, Michael; Weiss, Jeffrey A; Ateshian, Gerard A; Maas, Steve A; McCulloch, Andrew D; Peng, Grace C Y
The role of computational modeling for biomechanics research and related clinical care will be increasingly prominent. The biomechanics community has been developing computational models routinely for exploration of the mechanics and mechanobiology of diverse biological structures. As a result, a large array of models, data, and discipline-specific simulation software has emerged to support endeavors in computational biomechanics. Sharing computational models and related data and simulation software has first become a utilitarian interest, and now, it is a necessity. Exchange of models, in support of knowledge exchange provided by scholarly publishing, has important implications. Specifically, model sharing can facilitate assessment of reproducibility in computational biomechanics and can provide an opportunity for repurposing and reuse, and a venue for medical training. The community's desire to investigate biological and biomechanical phenomena crossing multiple systems, scales, and physical domains, also motivates sharing of modeling resources as blending of models developed by domain experts will be a required step for comprehensive simulation studies as well as the enhancement of their rigor and reproducibility. The goal of this paper is to understand current perspectives in the biomechanics community for the sharing of computational models and related resources. Opinions on opportunities, challenges, and pathways to model sharing, particularly as part of the scholarly publishing workflow, were sought. A group of journal editors and a handful of investigators active in computational biomechanics were approached to collect short opinion pieces as a part of a larger effort of the IEEE EMBS Computational Biology and the Physiome Technical Committee to address model reproducibility through publications. A synthesis of these opinion pieces indicates that the community recognizes the necessity and usefulness of model sharing. There is a strong will to facilitate
Rodriguez-Gutierrez, Rene; Gionfriddo, Michael R; Ospina, Naykky Singh; Maraka, Spyridoula; Tamhane, Shrikant; Montori, Victor M; Brito, Juan P
In medicine and endocrinology, there are few clinical circumstances in which clinicians can accurately predict what is best for their patients. As a result, patients and clinicians frequently have to make decisions about which there is uncertainty. Uncertainty results from limitations in the research evidence, unclear patient preferences, or an inability to predict how treatments will fit into patients' daily lives. The work that patients and clinicians do together to address the patient's situation and engage in a deliberative dialogue about reasonable treatment options is often called shared decision making. Decision aids are evidence-based tools that facilitate this process. Shared decision making is a patient-centred approach in which clinicians share information about the benefits, harms, and burden of different reasonable diagnostic and treatment options, and patients explain what matters to them in view of their particular values, preferences, and personal context. Beyond the ethical argument in support of this approach, decision aids have been shown to improve patients' knowledge about the available options, accuracy of risk estimates, and decisional comfort. Decision aids also promote patient participation in the decision-making process. Despite accumulating evidence from clinical trials, policy support, and expert recommendations in endocrinology practice guidelines, shared decision making is still not routinely implemented in endocrine practice. Additional work is needed to enrich the number of available tools and to implement them in practice workflows. Also, although the evidence from randomised controlled trials favours the use of this shared decision making in other settings, populations, and illnesses, the effect of this approach has been studied in a few endocrine disorders. Future pragmatic trials are needed to explore the effect and feasibility of shared decision making implementation into routine endocrinology and primary care practice. With the
Dubovitskaya, Alevtina; Xu, Zhigang; Ryu, Samuel; Schumacher, Michael; Wang, Fusheng
Electronic medical records (EMRs) are critical, highly sensitive private information in healthcare, and need to be frequently shared among peers. Blockchain provides a shared, immutable and transparent history of all the transactions to build applications with trust, accountability and transparency. This provides a unique opportunity to develop a secure and trustable EMR data management and sharing system using blockchain. In this paper, we present our perspectives on blockchain based healthcare data management, in particular, for EMR data sharing between healthcare providers and for research studies. We propose a framework on managing and sharing EMR data for cancer patient care. In collaboration with Stony Brook University Hospital, we implemented our framework in a prototype that ensures privacy, security, availability, and fine-grained access control over EMR data. The proposed work can significantly reduce the turnaround time for EMR sharing, improve decision making for medical care, and reduce the overall cost.
Svetlana A. Mukhortova
Full Text Available Improving the quality of medical care is a priority in countries with developed and developing health care system. There are various approaches to improve the quality and safety of patient’s care, as well as various strategies to encourage hospitals to achieve this goal. The purpose of the presented literature review was to analyze existing experience of the implementation of technology of supportive supervision in health care facilities to improve the quality of hospital care delivery. The data sources for publication were obtained from the following medical databases: PubMed, Cochrane Library, Medscape, e-library, and books on the topic of the review written by experts. The article discusses the results of the research studies demonstrating the successes and failures of supportive supervision technology application. Implementation of supportive supervision in medical facilities based on generalized experience of different countries is a promising direction in improving the quality of medical care delivery. This technology opens up opportunities to improve skills and work quality of the staff at pediatric hospitals in the Russian Federation.
Ghadery-Sefat, Akram; Abdeyazdan, Zahra; Badiee, Zohreh; Zargham-Boroujeni, Ali
Parent-infant attachment is an important factor in accepting parenting role, accelerating infant survival, and adjusting to the environment outside the uterus. Since family supportive interventions can strengthen the parent-infant caring relationship, this study sought to investigate the relationship between mother-infant attachment and satisfaction of the mothers with the supportive nursing care received in the neonatal intensive care unit (NICU). In this descriptive-correlational study, 210 mothers with premature infants who were hospitalized in the NICUs affiliated to Isfahan Medical University hospitals took part. The data were collected via Maternal Postnatal Attachment Scale and researcher's self-tailored questionnaire based on Nurse Parent Support Tool. Pearson correlation coefficient and multiple linear regressions were used to analyze the collected data. The results showed that the overall score of mother-infant attachment and the overall score of maternal satisfaction correlated with a correlation coefficient of r = 0.195. Also, the overall score of mother-infant attachment and mothers' satisfaction scores in the emotional, communicative-informative, and self-confidence domains correlated with correlation coefficients of r = 0.182, r = 0.0.189, and r = 0.0.304, respectively. The results of multiple regression analysis revealed that about 15% of changes in the dependent variable (mother-infant attachment) could be explained by different dimensions of mothers' satisfaction. The results of the study showed that mother-infant attachment improved by increasing mothers' satisfaction of supportive nursing care. Therefore, it seems necessary to increase maternal satisfaction through given nursing care support, in order to promote mother-infant attachment.
Full Text Available Abstract Background - Prehospital care is classified into ALS- (advanced life support and BLS- (basic life support levels according to the methods used. ALS-level prehospital care uses invasive methods, such as intravenous fluids, medications and intubation. However, the effectiveness of ALS care compared to BLS has been questionable. Aim - The aim of this systematic review is to compare the effectiveness of ALS- and BLS-level prehospital care. Material and methods - In a systematic review, articles where ALS-level prehospital care was compared to BLS-level or any other treatment were included. The outcome variables were mortality or patient's health-related quality of life or patient's capacity to perform daily activities. Results - We identified 46 articles, mostly retrospective observational studies. The results on the effectiveness of ALS in unselected patient cohorts are contradictory. In cardiac arrest, early cardiopulmonary resuscitation and defibrillation are essential for survival, but prehospital ALS interventions have not improved survival. Prehospital thrombolytic treatment reduces mortality in patients having a myocardial infarction. The majority of research into trauma favours BLS in the case of penetrating trauma and also in cases of short distance to a hospital. In patients with severe head injuries, ALS provided by paramedics and intubation without anaesthesia can even be harmful. If the prehospital care is provided by an experienced physician and by a HEMS organisation (Helicopter Emergency Medical Service, ALS interventions may be beneficial for patients with multiple injuries and severe brain injuries. However, the results are contradictory. Conclusions - ALS seems to improve survival in patients with myocardial infarction and BLS seems to be the proper level of care for patients with penetrating injuries. Some studies indicate a beneficial effect of ALS among patients with blunt head injuries or multiple injuries. There is
Amanda Collis; David McAllister; Michael Ball
BBSRC recognizes the importance of contributing to the growing international efforts in data sharing. BBSRC is committed to getting the best value for the funds we invest and believes that making research data more readily available will reinforce open scientific inquiry and stimulate new investigations and analyses. BBSRC supports the view that data sharing should be led by the scientific community and driven by scientific need. It should also be cost effective and the data shared should be ...
Hargreaves, Sarah; Bath, Peter A; Duffin, Suzanne; Ellis, Julie
The availability of an increasing number of online health forums has altered the experience of living with a health condition, as more people are now able to connect and support one another. Empathy is an important component of peer-to-peer support, although little is known about how empathy develops and operates within online health forums. The aim of this paper is to explore how empathy develops and operates within two online health forums for differing health conditions: breast cancer and motor neuron disease (MND), also known as amyotrophic lateral sclerosis. This qualitative study analyzed data from two sources: interviews with forum users and downloaded forum posts. Data were collected from two online health forums provided by UK charities: Breast Cancer Care and the Motor Neurone Disease Association. We analyzed 84 threads from the breast cancer forum and 52 from the MND forum. Threads were purposively sampled to reflect varied experiences (eg, illness stages, topics of conversation, and user characteristics). Semistructured interviews were conducted with 14 Breast Cancer Care forum users and five users of the MND forum. All datasets were analyzed thematically using Braun and Clarke's six-phase approach and combined to triangulate the analysis. We found that empathy develops and operates through shared experiences and connections. The development of empathy begins outside the forum with experiences of illness onset and diagnosis, creating emotional and informational needs. Users came to the forum and found their experiences and needs were shared and understood by others, setting the empathetic tone and supportive ethos of the forum. The forum was viewed as both a useful and meaningful space in which they could share experiences, information, and emotions, and receive empathetic support within a supportive and warm atmosphere. Empathy operated through connections formed within this humane space based on similarity, relationships, and shared feelings. Users
Schaap, Feija; Dijkstra, Geke; Fokkens, Andrea; Reijneveld, Sijmen; Finnema, Evelyn
Background: The number of people with intellectual disability and dementia in-creases; this combination causes behavioural changes. Dementia Care Mapping (DCM) supports staff in dementia care in nursing homes and may be useful in intel-lectual disability-care. This qualitative study examines the
Parsell, Cameron; Ten Have, Charlotte; Denton, Michelle; Walter, Zoe
Objectives The aims of the present study were to examine tenants' experiences of a model of integrated health care and supportive housing and to identify whether integrated health care and supportive housing improved self-reported health and healthcare access. Methods The present study used a mixed-method survey design (n=75) and qualitative interviews (n=20) performed between September 2015 and August 2016. Participants were tenants of permanent supportive housing in Brisbane (Qld, Australia). Qualitative data were analysed thematically. Results Integrated health care and supportive housing were resources for tenants to overcome systematic barriers to accessing mainstream health care experienced when homeless. When homeless, people did not have access to resources required to maintain their health. Homelessness meant not having a voice to influence the health care people received; healthcare practitioners treated symptoms of poverty rather than considering how homelessness makes people sick. Integrated healthcare and supportive housing enabled tenants to receive treatment for health problems that were compounded by the barriers to accessing mainstream healthcare that homelessness represented. Conclusions Extending the evidence about housing as a social determinant of health, the present study shows that integrated health care and supportive housing enabled tenants to take control to self-manage their health care. In addition to homelessness directly contributing to ill health, the present study provides evidence of how the experience of homelessness contributes to exclusions from mainstream healthcare. What is known about the topic? People who are homeless experience poor physical and mental health, have unmet health care needs and use disproportionate rates of emergency health services. What does the paper add? The experience of homelessness creates barriers to accessing adequate health care. The provision of onsite multidisciplinary integrated health care in
Maastrup, Ragnhild; Bojesen, Susanne Nordby; Kronborg, Hanne
Background: The incidence of breastfeeding of preterm infants is affected by the support provided at the hospital and in the neonatal intensive care unit (NICU). However, policies and guidelines promoting breastfeeding vary both nationally and internationally. Objectives: The aim of this survey...... was to describe breastfeeding support in Danish NICUs, where approximately 98% of mothers initiate lactation. Methods: A national survey of all 19 Danish NICUs was conducted in 2009. Four NICUs were at designated Baby-Friendly hospitals, and 5 had a lactation consultant. In all NICUs, it was possible for some...... parents to stay overnight; 2 units had short restrictions on parents' presence. Five NICUs had integrated postpartum care for mothers. Breastfeeding policies, written guidelines, and systematic breastfeeding training for the staff were common in most NICUs. Seventeen NICUs recommended starting breast milk...
Schmidt, K.; Gensichen, J.; Petersen, J.J.; Szecsenyi, J.; Walther, M.; Williams, G.; Freund, T.
OBJECTIVES: There is a growing need for studies to measure how patients feel supported in their autonomy. The Health Care Climate Questionnaire (HCCQ) is an instrument to assess the physician's support to motivate the patient to take personal responsibility for his/her health. The aim of this study
Libby MM Morris
Full Text Available Background In Scotland, out-of-hours calls are all triaged by the National Health Service emergency service (NHS24 but the clinicians receiving calls have no direct access to patient records.Objective To improve the safety of patient care in unscheduled consultations when the usual primary care record is not available.Technology The Emergency Care Summary (ECS is a record system offering controlled access to medication and adverse reactions details for nearly every person registered with a general practice in Scotland. It holds a secure central copy of these parts of the GP practice record and is updated automatically twice daily. It is accessible under specified unplanned clinical circumstances by clinicians working in out-of-hours organisations, NHS24 and accident and emergency departments if they have consent from the patient and a current legitimate relationship for that patient’s care.Application We describe the design of the security model, management of data quality, deployment, costs and clinical benefits of the ECS over four years nationwide in Scotland, to inform the debate on the safe and effective sharing of health data in other nations.Evaluation Forms were emailed to 300 NHS24 clinicians and 81% of the 113 respondents said that the ECS was helpful or very helpful and felt that it changed their clinical management in 20% of cases.Conclusion The ECS is acceptable to patients and helpful for clinicians and is used routinely for unscheduled care when normal medical records are unavailable. Benefits include more efficient assessment and reduced drug interaction, adverse reaction and duplicate prescribing.
The purpose of this study was to implement diabetes self-management education in primary care using the Chronic Care Model and shared medical appointments (SMA) to provide evidence-based interventions to improve process and measure outcomes. A quality improvement project using the Plan-Do-Check-Act cycle was implemented in a primary care setting in South Texas to provide diabetes self-management education for adults. Biological measures were evaluated in 70 patients at initiation of the project and thereafter based on current practice guidelines. The results of the project were consistent with the literature regarding the benefits, sustainability, and viability of SMA. As compared with that in studies presented in the literature, the patient population who participated in SMA had similar outcomes regarding improvement in A1C, self-management skills, and satisfaction. SMA are an innovative system redesign concept with the potential to provide comprehensive and coordinated care for patients with multiple and chronic health conditions while still being an efficient, effective, financially viable, and sustainable program. As the incidence and prevalence of diabetes increase, innovative models of care can meet the growing demand for access and utilization of diabetes self-management education programs. Programs focusing on chronic conditions to improve outcomes can be replicated by health care providers in primary care settings. SMA can increase revenue and productivity, improve disease management, and increase provider and patient satisfaction.
Davidson, Jaime A; Rosales, Aracely; Shillington, Alicia C; Bailey, Robert A; Kabir, Chris; Umpierrez, Guillermo E
To describe the cultural and linguistic adaptation and Spanish translation of an English-language patient decision aid (PDA) for use in supporting shared decision-making in Hispanics/Latinos with type 2 diabetes mellitus (T2DM), a group at a high risk for complications. A steering committee of endocrinologists, a primary care physician, a certified diabetes educator, and a dietician, each with extensive experience in providing care to Hispanics/Latinos was convened to assess a PDA developed for English-speaking patients with T2DM. English content was reviewed for cultural sensitivity and appropriateness for a Hispanic/Latino population. A consensus-building process and iterative version edits incorporated clinician perspectives. The content was adapted to be consistent with traditional Hispanic/Latino cultural communication precepts (eg, avoidance of hostile confrontation; value for warm interaction; respect for authority; value of family support for decisions). The PDA was translated by native-speaking individuals with diabetes expertise. The PDA underwent testing during cognitive interviews with ten Spanish-speaking Hispanics/Latinos with T2DM to ensure that the content is reflective of the experience, understanding, and language Hispanic/Latino patients use to describe diabetes and treatment. Content edits were made to assure a literacy level appropriate to the audience, and the PDA was produced for online video dissemination. High-quality, well-developed tools to facilitate shared decision-making in populations with limited access to culturally sensitive information can narrow gaps and align care with individual patient preferences. A newly developed PDA is available for shared decision-making that provides culturally appropriate treatment information for inadequately controlled Hispanics/Latinos with T2DM. The impact on the overall health of patients and care management of T2DM requires further study.
Sebaa, Abderrazak; Nouicer, Amina; Tari, AbdelKamel; Tarik, Ramtani; Abdellah, Ouhab
A study about healthcare resources can improve decisions regarding the allotment and mobilization of medical resources and to better guide future investment in the health sector. The aim of this work was to design and implement a decision support system to improve medical resources allocation of Bejaia region. To achieve the retrospective cohort study, we integrated existing clinical databases from different Bejaia department health sector institutions (an Algerian department) to collect information about patients from January 2015 through December 2015. Data integration was performed in a data warehouse using the multi-dimensional model and OLAP cube. During implementation, we used Microsoft SQL server 2012 and Microsoft Excel 2010. A medical decision support platform was introduced, and was implemented during the planning stages allowing the management of different medical orientations, it provides better apportionment and allotment of medical resources, and ensures that the allocation of health care resources has optimal effects on improving health. In this study, we designed and implemented a decision support system which would improve health care in Bejaia department to especially assist in the selection of the optimum location of health center and hospital, the specialty of the health center, the medical equipment and the medical staff.
able to construct a checklist of a clinical and physiologic model and then a computerised decision support system that will perform two functions: the...the provision of nutritional therapy, and assessment of use by nursing and physician staff KEYWORDS Nutrition, severe burn, decision support... clinical testing. Checklist and Decision Support in Nutritional Care for Burned Patients Proposal Number: 12340011 W81XWH-12-2-0074 PI: Steven E
Lord, Paul A; Willis, Thomas A; Carder, Paul; West, Robert M; Foy, Robbie
Recruitment of representative samples in primary care research is essential to ensure high-quality, generalizable results. This is particularly important for research using routinely recorded patient data to examine the delivery of care. Yet little is known about how different recruitment strategies influence the characteristics of the practices included in research. We describe three approaches for recruiting practices to data-sharing studies, examining differences in recruitment levels and practice representativeness. We examined three studies that included varying populations of practices from West Yorkshire, UK. All used anonymized patient data to explore aspects of clinical practice. Recruitment strategies were 'opt-in', 'mixed opt-in and opt-out' and 'opt-out'. We compared aggregated practice data between recruited and not-recruited practices for practice list size, deprivation, chronic disease management, patient experience and rates of unplanned hospital admission. The opt-out strategy had the highest recruitment (80%), followed by mixed (70%) and opt-in (58%). Practices opting-in were larger (median 7153 versus 4722 patients, P = 0.03) than practices that declined to opt-in. Practices recruited by mixed approach were larger (median 7091 versus 5857 patients, P = 0.04) and had differences in the clinical quality measure (58.4% versus 53.9% of diabetic patients with HbA1c ≤ 59 mmol/mol, P Researchers should, with appropriate ethical safeguards, consider opt-out recruitment of practices for studies involving anonymized patient data sharing. © The Author 2016. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: email@example.com.
This paper summarizes the recent trends and highlights the challenges and opportunities in decision support and knowledge management for patient-centered, personalized, and personal health care. The discussions are based on a broad survey of related references, focusing on the most recent publications. Major advances are examined in the areas of i) shared decision making paradigms, ii) continuity of care infrastructures and architectures, iii) human factors and system design approaches, iv) knowledge management innovations, and v) practical deployment and change considerations. Many important initiatives, projects, and plans with promising results have been identified. The common themes focus on supporting the individual patients who are playing an increasing central role in their own care decision processes. New collaborative decision making paradigms and information infrastructures are required to ensure effective continuity of care. Human factors and usability are crucial for the successful development and deployment of the relevant systems, tools, and aids. Advances in personalized medicine can be achieved through integrating genomic, phenotypic and other biological, individual, and population level information, and gaining useful insights from building and analyzing biological and other models at multiple levels of abstraction. Therefore, new Information and Communication Technologies and evaluation approaches are needed to effectively manage the scale and complexity of biomedical and health information, and adapt to the changing nature of clinical decision support. Recent research in decision support and knowledge management combines heterogeneous information and personal data to provide cost-effective, calibrated, personalized support in shared decision making at the point of care. Current and emerging efforts concentrate on developing or extending conventional paradigms, techniques, systems, and architectures for the new predictive, preemptive, and
Romanò, Massimo; Bertona, Roberta; Zorzoli, Federica; Villani, Rosvaldo
Admissions to the intensive care unit at the end of life of patients with chronic non-malignant diseases are increasing. This involves the need for the development of palliative care culture and competence, also in the field of intensive cardiology. Palliative care should be implemented in the treatment of all patients with critical stages of disease, irrespective of prognosis, in order to improve the quality of care at the end of life.This review analyzes in detail the main clinical, ethical and communicational issues to move toward the introduction of basics of palliative care in cardiac intensive care units. It outlines the importance of shared decision-making with the patient and his family, with special attention to withholding/withdrawing of life-sustaining treatments, palliative sedation, main symptom control, patient and family psychological support.
Kortteisto, Tiina; Komulainen, Jorma; Kunnamo, Ilkka
implementation of eCDS requires time and repeated supportive input. Primary care professionals need time and training for adapting eCDS in their daily routine. In addition, the eCDS content should be tailored to fulfil different professionals’ information needs in primary care practice....
Dauwerse, L.M.; van der Dam, S.; Abma, T.A.
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
Calkins, Margaret; Cassella, Christine
There is debate about the relative merits and costs of private versus shared bedrooms in nursing homes, particularly in light of the current efforts at creating both cost-efficient and person-centered care facilities. The purpose of this project was to explore the extent to which there is evidence-based information that supports the merits of three different bedroom configurations: traditional shared, enhanced shared, and private. We developed a framework of four broad domains that were related to the different bedroom configurations: psychosocial, clinical, operational, and construction or building factors. Within each dimension, we identified individual factors through the literature, interviews, and focus groups, with the goal of determining the breadth, depth, and quality of evidence supporting the benefits of one configuration over another. The vast majority of factors identified in this study, regardless of whether there was solid empirical data, information from the focus groups, or other anecdotal evidence, indicated better outcomes associated with private rooms over shared rooms in nursing homes. Cost estimates suggest that construction cost (plus debt service) differences range from roughly $20,506 per bed for a traditional shared room to $36,515 for a private one, and that such differences are recouped in less than 2 years if beds are occupied, and in less than 3 months if a shared bed remains unoccupied at average private-pay room costs. Despite limited empirical evidence in some areas, this project provides the foundation for an evidence-based life-cycle costing perspective regarding the relative merits of different bedroom configurations.
Ventres, William B; Frankel, Richard M
Shared presence is a state of being in which physicians and patients enter into a deep sense of trust, respect, and knowing that facilitates healing. Communication between physicians and patients (and, in fact, all providers and recipients of health care) is the medium through which shared presence occurs, regardless of the presenting problem, time available, location of care, or clinical history of the patient. Conceptualizing how communication leads to shared presence has been a challenging task, however. Pathways of this process have been routinely lumped together as the biopsychosocial model or patient, person, and relationship-centered care--all deceptive in their simplicity but, in fact, highly complex--or reduced to descriptive explications of one constituent element (e.g., empathy). In this article, we reconcile these pathways and elements by presenting a graphic image for clinicians and teachers in medical education. This conceptual image serves as a framework to synthesize the vast literature on physician-patient communication. We place shared presence, the fundamental characteristic of effective clinical communication, at the center of our figure. Around this focal point, we locate four elemental factors that either contribute to or result from shared presence, including interpersonal skills, relational contexts, actions in clinical encounters, and healing outcomes. By visually presenting various known and emergent theories of physician-patient communication, outlining the flow of successful encounters between physicians and patients, and noting how such encounters can improve outcomes, physicians, other health care professionals, and medical educators can better grasp the complexity, richness, and potential for achieving shared presence with their patients. (c) 2015 APA, all rights reserved).
Ericson-Lidman, Eva; Strandberg, Gunilla
Conscience can be perceived as an asset that helps care providers to provide good care, but it can also be a burden that generates stress of conscience (stress related to a troubled conscience). Participatory action research (PAR) has been shown to be successful in supporting care providers in residential care of older people to learn to deal with their troubled conscience in challenging and demanding care situations. The aim of the study was to describe an intervention process to assist care providers in residential care of older people to constructively deal with their troubled conscience related to perceptions of deficient teamwork. The study design was grounded in PAR. Nine enrolled nurses (ENs), two nursing aids (NAs), one Registered Nurse (RN) and their manager participated in 12 PAR sessions. All sessions were tape-recorded, and a domain analysis of the transcriptions was performed. Findings show that a PAR-based intervention can support care providers to understand, handle and take measures against deficient teamwork. Using troubled conscience as a driving force can increase the opportunities to improve quality of care in residential care for older people. During the PAR process, participants raised their awareness of the need to view the team in a wider sense and that the manager and the Registered Nurse should also be members of the team to improve team outcome. To improve clinical practice, we suggest that teams in residential care of older people should be enabled to share and reflect on challenging situations that generate troubled conscience. However, as shown in this study, care providers might need support in order to facilitate and promote sharing and reflecting on what their conscience tells them. © 2014 Nordic College of Caring Science.
Fukui, Sadaaki; Salyers, Michelle P.; Matthias, Marianne S.; Collins, Linda; Thompson, John; Coffman, Melinda; Torrey, William C.
The purpose of this study was to quantitatively examine elements of shared decision making (SDM), and to establish empirical evidence for factors correlated with SDM and the level of agreement between consumer and provider in psychiatric care. Transcripts containing 128 audio-recorded medication check-up visits with eight providers at three community mental health centers were rated using the Shared Decision Making scale, adapted from Braddock’s Informed Decision Making Scale (Braddock et al., 1997; 1999; 2008). Multilevel regression analyses revealed that greater consumer activity in the session and greater decision complexity significantly predicted the SDM score. The best predictor of agreement between consumer and provider was “exploration of consumer preference,” with a four-fold increase in full agreement when consumer preferences were discussed more completely. Enhancing active consumer participation, particularly by incorporating consumer preferences in the decision making process appears to be an important factor in SDM. PMID:23299226
Litchman, Michelle L; Rothwell, Erin; Edelman, Linda S
The use of the diabetes online community (DOC) is growing across all age groups. The aim of this exploratory study was to describe why older adults participated in the DOC, and how DOC users interacted with their healthcare providers. Telephone interviews (N=20) were conducted with older adult DOC users (born between 1946 and 1964) living in the United States. Interviews were analyzed using qualitative content analysis adhering to rigor and reproducibility standards. Themes that emerged from the data related to DOC participation included: information to improve self-care, emotional support, belonging to a community, validation of information, cause for concern and interaction with healthcare providers. Participants used the DOC for day to day diabetes management advice and healthcare providers for medical information and care. Participants highly valued the DOC and regarded their participation as a way to increase knowledge to improve self-care and reciprocate emotional support with others for diabetes management. The DOC filled gaps in knowledge and support participants were not able to get elsewhere. The DOC serves as an important source of information and support for individuals with diabetes and may be a cost-effective strategy to augment standard diabetes care. Copyright © 2017 Elsevier B.V. All rights reserved.
Burkoski, Vanessa; Yoon, Jennifer
Motivate, Innovate, Celebrate: an innovative shared governance model through the establishment of continuous quality improvement (CQI) councils was implemented across the London Health Sciences Centre (LHSC). The model leverages agent-specific knowledge at the point of care and provides a structure aimed at building human resources capacity and sustaining enhancements to quality and safe care delivery. Interprofessional and cross-functional teams work through the CQI councils to identify, formulate, execute and evaluate CQI initiatives. In addition to a structure that facilitates collaboration, accountability and ownership, a corporate CQI Steering Committee provides the forum for scaling up and spreading this model. Point-of-care staff, clinical management and educators were trained in LEAN methodology and patient experience-based design to ensure sufficient knowledge and resources to support the implementation.
Yang, L; Frize, M; Eng, P; Walker, R; Catley, C
Recent studies in neonatal medicine, clinical nursing, and cognitive psychology have indicated the need to augment current decision-making practice in neonatal intensive care units with computerized, intelligent decision support systems. Rapid progress in artificial intelligence and knowledge management facilitates the design of collaborative ethical decision-support tools that allow clinicians to provide better support for parents facing inherently difficult choices, such as when to withdraw aggressive treatment. The appropriateness of using computers to support ethical decision-making is critically analyzed through research and literature review. In ethical dilemmas, multiple diverse participants need to communicate and function as a team to select the best treatment plan. In order to do this, physicians require reliable estimations of prognosis, while parents need a highly useable tool to help them assimilate complex medical issues and address their own value system. Our goal is to improve and structuralize the ethical decision-making that has become an inevitable part of modern neonatal care units. The paper contributes to clinical decision support by outlining the needs and basis for ethical decision support and justifying the proposed development efforts.
Tabano, David C; Cole, Elizabeth; Holve, Erin; Davidson, Arthur J
Data networks, consisting of pooled electronic health data assets from health care providers serving different patient populations, promote data sharing, population and disease monitoring, and methods to assess interventions. Better understanding of data networks, and their capacity to support public health objectives, will help foster partnerships, expand resources, and grow learning health systems. We conducted semistructured interviews with 16 key informants across the United States, identified as network stakeholders based on their respective experience in advancing health information technology and network functionality. Key informants were asked about their experience with and infrastructure used to develop data networks, including each network's utility to identify and characterize populations, usage, and sustainability. Among 11 identified data networks representing hundreds of thousands of patients, key informants described aggregated health care clinical data contributing to population health measures. Key informant interview responses were thematically grouped to illustrate how networks support public health, including (1) infrastructure and information sharing; (2) population health measures; and (3) network sustainability. Collaboration between clinical data networks and public health entities presents an opportunity to leverage infrastructure investments to support public health. Data networks can provide resources to enhance population health information and infrastructure.
Hirotsu, Misaki; Sohma, Michiro; Takagi, Hidehiko
In recent years, chemotherapies have been further advanced because of successive launch of new drugs, introduction of molecular targeting, etc., and the concept of so-called Team Medical Care ,the idea of sharing interdisciplinary expertise for collaborative treatment, has steadily penetrated in the Japanese medical society. Dr. Naoto Ueno is a medical oncologist at US MD Anderson Cancer Center, the birthplace of the Team Medical Care. He has advocated the concept of ABC of Team Oncology by positioning pharmaceutical companies as Team C. Under such team practice, we believe that medical representatives of a pharmaceutical company should also play a role as a member of the Team Medical Care by providing appropriate drug use information to healthcare professionals, supporting post-marketing surveillance of treated patients, facilitating drug information sharing among healthcare professionals at medical institutions, etc.
Strauss, Shiela M.; Munoz-Plaza, Corrine; Tiburcio, Nelson J.; Maisto, Stephen A.; Conigliaro, Joseph; Gwadz, Marya; Lunievicz, Joseph; Norman, Robert
Although HIV care providers are strategically situated to support their patients’ alcohol reduction efforts, many do not do so, sometimes failing to view this support as consistent with their roles. Using data collected from 112 HIV providers in 7 hospital-based HIV Care Centers in the NYC metropolitan area, this paper examines the correlates of providers’ role legitimacy as patients’ alcohol reduction supporters. Results indicate that providers (1) responsible for a very large number of patients and (2) those with limited confidence in their own ability to give this assistance, but high confidence in their program's ability to do so, were less likely to have a high level of role legitimacy as patients’ alcohol reduction supporters. Findings suggest the types of providers to target for alcohol reduction support training. PMID:20556238
... Consumers Consumer Information by Audience For Women Contact Lens Care Share Tweet Linkedin Pin it More sharing ... www.fda.gov/medwatch Learn More about Contact Lens Care Other Tips on Contact Lenses Decorative Contact ...
Sinn, Chi-Ling Joanna; Jones, Aaron; McMullan, Janet Legge; Ackerman, Nancy; Curtin-Telegdi, Nancy; Eckel, Leslie; Hirdes, John P
Personal support services enable many individuals to stay in their homes, but there are no standard ways to classify need for functional support in home and community care settings. The goal of this project was to develop an evidence-based clinical tool to inform service planning while allowing for flexibility in care coordinator judgment in response to patient and family circumstances. The sample included 128,169 Ontario home care patients assessed in 2013 and 25,800 Ontario community support clients assessed between 2014 and 2016. Independent variables were drawn from the Resident Assessment Instrument-Home Care and interRAI Community Health Assessment that are standardised, comprehensive, and fully compatible clinical assessments. Clinical expertise and regression analyses identified candidate variables that were entered into decision tree models. The primary dependent variable was the weekly hours of personal support calculated based on the record of billed services. The Personal Support Algorithm classified need for personal support into six groups with a 32-fold difference in average billed hours of personal support services between the highest and lowest group. The algorithm explained 30.8% of the variability in billed personal support services. Care coordinators and managers reported that the guidelines based on the algorithm classification were consistent with their clinical judgment and current practice. The Personal Support Algorithm provides a structured yet flexible decision-support framework that may facilitate a more transparent and equitable approach to the allocation of personal support services.
Chi-Ling Joanna Sinn
Full Text Available Abstract Background Personal support services enable many individuals to stay in their homes, but there are no standard ways to classify need for functional support in home and community care settings. The goal of this project was to develop an evidence-based clinical tool to inform service planning while allowing for flexibility in care coordinator judgment in response to patient and family circumstances. Methods The sample included 128,169 Ontario home care patients assessed in 2013 and 25,800 Ontario community support clients assessed between 2014 and 2016. Independent variables were drawn from the Resident Assessment Instrument-Home Care and interRAI Community Health Assessment that are standardised, comprehensive, and fully compatible clinical assessments. Clinical expertise and regression analyses identified candidate variables that were entered into decision tree models. The primary dependent variable was the weekly hours of personal support calculated based on the record of billed services. Results The Personal Support Algorithm classified need for personal support into six groups with a 32-fold difference in average billed hours of personal support services between the highest and lowest group. The algorithm explained 30.8% of the variability in billed personal support services. Care coordinators and managers reported that the guidelines based on the algorithm classification were consistent with their clinical judgment and current practice. Conclusions The Personal Support Algorithm provides a structured yet flexible decision-support framework that may facilitate a more transparent and equitable approach to the allocation of personal support services.
Full Text Available Home care, continuous follow-up, and endless post discharge support play vital role in preventing the emergence of mental and physical disabilities and death among preterm infants. Providing necessary care and support for such infants requires huge financial and human resources and exposes heavy costs on hygiene and health system. Internet and information sharing applications, particularly Web 2.0, and social media present innovative techniques to provide a convenient channel to exchange necessary information between infants, parents, and caregivers. Despite the increasingly expanding use of social media in health and medicine, such devices have rarely been applied in more specialized fields, such as the hygiene and health of preterm infants. Thus, the present study aims at investigating studies published on the experiences of parent in regard with the integration of social media in the improvement of preterm infant treatment, determining the function of social media in taking better care of preterm infants, and presenting suggestions for further practical researches in this area of knowledge. This review study was conducted in 2016. To conduct the study, published articles in the years 2005 to 2016, in English with an emphasis on Social media and Preterm infants were studied. Search was done in databases including Pubmed, Science Direct, Google Scholar, Proquest. The collected data were analyzed. The role of social media in three areas of preterm infants care, sharing the knowledge of clinical professionals, and sharing parenting experiences was clarified. Social media provide the necessary background for the distribution of the knowledge of medical experts; it also creates the opportunities of exchanging ideas, sharing parenting experiences, and expanding the knowledge of experts and educated individuals in addition to providing a stress free environment. The potential of social media in facilitating medical interventions for preterm infants
Boussaha, Ali; Diatta, Christian Sina
The New Partnership for Africa's Development (NEPAD) is a pledge by African leaders to eradicate poverty and to promote sustainable growth and development. NEPAD is a 'new framework of interaction with the rest of the world, including the industrialised countries and multilateral organizations.' The agenda is based on regional priorities and development plans and its implementation relies on African ownership and management. As a UN system organisation, the IAEA strongly supports the priorities identified in the Millennium Declaration and the New Partnership for Africa's Development. As a technical agency, the IAEA shares its recognized core competencies and technical expertise in support of NEPAD goals. Efforts aim at strengthening institutional capacity building in nuclear sciences and technology and promoting the sustainable application of nuclear techniques for social and economic development. The IAEA has a membership of 34 African countries. The Agency supports them under its technical cooperation programme through provision of expertise, training opportunities and equipment in priority areas identified by the countries themselves. For many African Member States, meeting basic human needs through the implementation of poverty alleviation strategies remains the top priority on the agenda for national development plans and international cooperation programmes. In the context of sustainable development, special attention is being paid to enlarging the contribution of isotopes and nuclear techniques in major areas of economic and social significance and to promoting regional cooperation in nuclear science and technology related fields. As a partner in development, the Agency has promoted and undertaken programmes to support African countries' efforts to address priority development issues particularly in the areas of health care, food and agriculture and water resources development. The IAEA technical cooperation mechanism includes support to the African Regional
Gould, Heather; Perrucci, Alissa; Barar, Rana; Sinkford, Danielle; Foster, Diana Greene
Little is known about how patient education and emotional support is provided at abortion facilities. This pilot study documents 27 facilities' practices in this aspect of abortion care. We conducted confidential telephone interviews with staff from 27 abortion facilities about their practices. The majority of facilities reported they rely primarily on trained nonclinician staff to educate patients and provide emotional support. As part of their informed consent and counseling processes, facilities reported that staff always provide patients with information about the procedure (96%), assess the certainty of their abortion decisions (92%), assess their feelings and provide emotional support (74%), and provide contraceptive health education (92%). Time spent providing these components of care varied across facilities and patients. When describing their facility's care philosophy, many respondents expressed support for "patient-centered," "supportive," "nonjudgmental" care. Eighty-two percent agreed that it is the facility's role to provide counseling for emotional issues related to abortion. All facilities valued informed consent, patient education, and emotional support. Although the majority of facilities considered counseling for emotional issues to be a part of their role, some did not. Future research should examine patients' preferences regarding abortion care and counseling and how different approaches to care affect women's emotional well-being after having an abortion. This information is important in light of current, widespread legislative efforts that aim to regulate abortion counseling, which are being proposed without an understanding of patient needs or facility practices. Copyright © 2012 Jacobs Institute of Women's Health. Published by Elsevier Inc. All rights reserved.
Full Text Available Defects involving specialised areas with characteristic anatomical features, such as the nipple, upper eyelid, and lip, benefit greatly from the use of sharing procedures. The vulva, a complex 3-dimensional structure, can also be reconstructed through a sharing procedure drawing upon the contralateral vulva. In this report, we present the interesting case of a patient with chronic, massive, localised lymphedema of her left labia majora that was resected in 2011. Five years later, she presented with squamous cell carcinoma over the left vulva region, which is rarely associated with chronic lymphedema. To the best of our knowledge, our management of the radical vulvectomy defect with a labia majora sharing procedure is novel and has not been previously described. The labia major flap presented in this report is a shared flap; that is, a transposition flap based on the dorsal clitoral artery, which has consistent vascular anatomy, making this flap durable and reliable. This procedure epitomises the principle of replacing like with like, does not interfere with leg movement or patient positioning, has minimal donor site morbidity, and preserves other locoregional flap options for future reconstruction. One limitation is the need for a lax contralateral vulva. This labia majora sharing procedure is a viable option in carefully selected patients.
Alyssa N Crittenden
Full Text Available Human prosociality is one of the defining characteristics of our species, yet the ontogeny of altruistic behavior remains poorly understood. The evolution of widespread food sharing in humans helped shape cooperation, family formation, life history, language, and the development of economies of scale. While the behavioral and ecological correlates of food sharing among adults are widely studied, very little is known about food sharing among children. Here, in the first study to analyze the food sharing patterns of hunter-gatherer children, we show that while sharing may be biased towards kin, reciprocity characterizes the majority of all sharing dyads, both related and unrelated. These data lend support to the recent claim that discrimination among kin might be linked with reciprocal altruism theory. Furthermore, we show that age positively correlates with an increase in sharing, both in frequency and amount, supporting recent suggestions that prosocial behaviors and egalitarianism develop strongly in middle childhood when children acquire the normative rules of their society.
Crittenden, Alyssa N; Zes, David A
Human prosociality is one of the defining characteristics of our species, yet the ontogeny of altruistic behavior remains poorly understood. The evolution of widespread food sharing in humans helped shape cooperation, family formation, life history, language, and the development of economies of scale. While the behavioral and ecological correlates of food sharing among adults are widely studied, very little is known about food sharing among children. Here, in the first study to analyze the food sharing patterns of hunter-gatherer children, we show that while sharing may be biased towards kin, reciprocity characterizes the majority of all sharing dyads, both related and unrelated. These data lend support to the recent claim that discrimination among kin might be linked with reciprocal altruism theory. Furthermore, we show that age positively correlates with an increase in sharing, both in frequency and amount, supporting recent suggestions that prosocial behaviors and egalitarianism develop strongly in middle childhood when children acquire the normative rules of their society.
Neville, Ron G; Greene, Alexandra C; Lewis, Sue
To explore patient and health care professional (HCP) views towards the use of multi-agent computer systems in their GP practice. Qualitative analysis of in-depth interviews and analysis of transcriptions. Urban health centre in Dundee, Scotland. Five representative healthcare professionals and 11 patients. Emergent themes from interviews revealed participants' attitudes and beliefs, which were coded and indexed. Patients and HCPs had similar beliefs, attitudes and views towards the implementation of multi-agent systems (MAS). Both felt modern communication methods were useful to supplement, not supplant, face-to-face consultations between doctors and patients. This was based on the immense trust these patients placed in their doctors in this practice, which extended to trust in their choice of communication technology and security. Rapid access to medical information increased patients' sense of shared partnership and self-efficacy. Patients and HCPs expressed respect for each other's time and were keen to embrace technology that made interactions more efficient, including for the altruistic benefit of others less technically competent. Patients and HCPs welcomed the introduction of agent technology to the delivery of health care. Widespread use will depend more on the trust patients place in their own GP than on technological issues.
Consumer views on a new holistic screening tool for supportive and palliative-care needs: Sheffield Profile for Assessment and Referral for Care (SPARC): a survey of self-help support groups in health care.
Hughes, Philippa; Ahmed, Nisar; Winslow, Michelle; Walters, Stephen J; Collins, Karen; Noble, Bill
Sheffield Profile for Assessment and Referral for Care (SPARC) was developed in response to concerns that palliative care may not be reaching all people who could benefit from it. Acceptability of the tool is an important step in developing its future use. To elicit the views of a wide variety of members of consumer and self-help support groups concerned with health care on the relevance, acceptability and the overall perception of using SPARC as an early holistic needs assessment tool in supportive and palliative care. This study was conducted in South Yorkshire and North Derbyshire (UK). Ninety-nine consumer and self-help groups were identified from information in the public domain. Thirty-eight groups participated. Packs containing study information and self-complete postal questionnaires were distributed to groups, and they were asked to circulate these to their members. Completed questionnaires were returned in pre-paid envelopes to the research team. 135 questionnaires and feedback forms were returned. The majority of respondents found SPARC easy to understand (93% (120/129; 95% Confidence Interval 87% to 96%) and complete (94% (125/133; 95% CI: 88% to 97%). A minority, 12.2% (16/131), of respondents found questions on SPARC 'too sensitive'. Overall, respondents considered SPARC an acceptable and relevant tool for clinical assessment of supportive and palliative-care needs. Whilst a small minority of people found SPARC difficult to understand (i.e. patients with cognitive impairments), most categories of service user found it relevant. Clinical studies are necessary to establish the clinical utility of SPARC. © 2013 John Wiley & Sons Ltd.
Estabrooks, Carole A; Morgan, Debra G; Squires, Janet E; Boström, Anne-Marie; Slaughter, Susan E; Cummings, Greta G; Norton, Peter G
Defining what constitutes a resident care unit in nursing home research is both a conceptual and practical challenge. The aim of this paper is to provide evidence in support of a definition of care unit in nursing homes by demonstrating: (1) its feasibility for use in data collection, (2) the acceptability of aggregating individual responses to the unit level, and (3) the benefit of including unit level data in explanatory models. An observational study design was used. Research (project) managers, healthcare aides, care managers, nursing home administrators and directors of care from thirty-six nursing homes in the Canadian prairie provinces of Alberta, Saskatchewan and Manitoba provided data for the study. A definition of care unit was developed and applied in data collection and analyses. A debriefing session was held with research managers to investigate their experiences with using the care unit definition. In addition, survey responses from 1258 healthcare aides in 25 of the 36 nursing homes in the study, that had more than one care unit, were analyzed using a multi-level modeling approach. Trained field workers administered the Alberta Context Tool (ACT), a 58-item self-report survey reflecting 10 organizational context concepts, to healthcare aides using computer assisted personal interviews. To assess the appropriateness of obtaining unit level scores, we assessed aggregation statistics (ICC(1), ICC(2), η², and ω²), and to assess the value of using the definition of unit in explanatory models, we performed multi-level modeling. In 10 of the 36 nursing homes, the care unit definition developed was used to align the survey data (for analytic purposes) to specific care units as designated by our definition, from that reported by the facility administrator. The aggregation statistics supported aggregating the healthcare aide responses on the ACT to the realigned unit level. Findings from the multi-level modeling further supported unit level aggregation. A
Westrope, R A; Vaughn, L; Bott, M; Taunton, R L
Quality patient care is best provided by competent clinical staff members who are committed to their work, organizational values, and goals, and who maintain employment over time. Shared governance has provided the framework for clinical nurses to become more committed to their practice through decision making and to assume accountability for the outcomes of their decisions. At a tertiary teaching facility, shared governance resulted in increased job satisfaction, commitment, and retention among staff nurses. The authors describe the journey from creation of the shared governance vision to reality, and the impact of the changes.
Lennox, Nicholas; Van Driel, Mieke L; van Dooren, Kate
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
Clark, Karen; Weir, Christine
As the disparities in rural healthcare have become better understood, the need to adjust and compensate for these unique challenges becomes a priority. This manuscript suggests three constructs that can be readily integrated into rural care providers' daily work to improve treatment outcomes. Autonomy support, relational support, and competence support are among the motivational constructs discussed with a special consideration for the unique cultural and environmental influences of rural West Virginia residents. The overall objective of this review is to renew the basic tenants of shared decision making as they related to successful behavioral change in primary care.
Shaw, James; Kearney, Colleen; Glenns, Brenda; McKay, Sandra
Home-based palliative care is increasingly dependent on interprofessional teams to deliver collaborative care that more adequately meets the needs of clients and families. The purpose of this pilot evaluation was to qualitatively explore the views of an interprofessional group of home care providers (occupational therapists, nurses, personal support work supervisors, community care coordinators, and a team coordinator) regarding a pilot project encouraging teamwork in interprofessional palliative home care services. We used qualitative methods, informed by an interprofessional conceptual framework, to analyse participants' accounts and provide recommendations regarding strategies for interprofessional team building in palliative home health care. Findings suggest that encouraging practitioners to share past experiences and foster common goals for palliative care are important elements of team building in interprofessional palliative care. Also, establishing a team leader who emphasises sharing power among team members and addressing the need for mutual emotional support may help to maximise interprofessional teamwork in palliative home care. These findings may be used to develop and test more comprehensive efforts to promote stronger interprofessional teamwork in palliative home health care delivery.
Neergaard, Mette Asbjørn; Olesen, Frede; Jensen, Anders Bonde
Little is known about the existing barriers to cooperation among health professionals in basic level palliative care for terminally ill patients with cancer in primary health care.......Little is known about the existing barriers to cooperation among health professionals in basic level palliative care for terminally ill patients with cancer in primary health care....
Tilley, Lorna; Cameron, Tony
The Index of Care is a web-based application designed to support the recently proposed four-stage 'bioarchaeology of care' methodology for identifying and interpreting health-related care provision in prehistory. The Index offers a framework for guiding researchers in 'thinking through' the steps of a bioarchaeology of care analysis; it continuously prompts consideration of biological and archaeological evidence relevant to care provision; it operationalises key concepts such as 'disability' and 'care'; and it encourages transparency in the reasoning underlying conclusions, facilitating review. This paper describes the aims, structure and content of the Index, and provides an example of its use. The Index of Care is freely available on-line; it is currently in active development, and feedback is sought to improve its utility and usability. This is the first time in bioarchaeology that an instrument for examining behaviour as complex as caregiving has been proposed. Copyright © 2014 Elsevier Inc. All rights reserved.
Full Text Available Abstract Background Shared decision making (SDM is fundamental to informed consent and client-centered care. So far, SDM frameworks have been limited to the client-physician dyad, even though care is increasingly delivered by interprofessional (IP teams. IP collaboration is especially essential in home care, one of health care's most rapidly growing areas. This study will assess whether it is possible to practice SDM in IP home care. Methods/Design We will use a qualitative case study and a quantitative survey to capture the macro, meso and micro levels of stakeholders in home care. The case study will follow the knowledge-to-action process framework to evaluate the work of an IP home care team at a Quebec City health center. Sources of data will include one-on-one interviews with patients, family caregivers or surrogates and significant others, and administrators; a focus group of home care health professionals; organizational documents; and government policies and standards. The interview guide for the interviews and the focus group will explore current practices and clinical problems addressed in home care; factors that could influence the implementation of the proposed IP approach to SDM; the face and content validity of the approach; and interventions to facilitate the implementation and evaluation of the approach. The survey will ask 300 health professionals working in home care at the health center to complete a questionnaire based on the Theory of Planned Behaviour that measures their intentions to engage in an IP approach to SDM. We will use our analysis of the individual interviews, the focus group and the survey to elaborate a toolkit for implementing an IP approach to SDM in home care. Finally, we will conduct a pilot study in Alberta to assess the transferability of our findings. Discussion We believe that developing tools to implement IP SDM in home care is essential to strengthening Canada's healthcare system and furthering
Narayanan, Siva; Hautamaki, Emily
The cost of cancer care in the United States continues to rise, with pressure on oncologists to provide high-quality, cost-effective care while maintaining the financial stability of their practice. Existing payment models do not typically reward care coordination or quality of care. In May 2014, the American Society of Clinical Oncology (ASCO) released a payment reform proposal (revised in May 2015) that includes a new payment structure for quality-of-care performance metrics. To assess US oncologists' perspectives on and support for ASCO's payment reform proposal, and to determine use of quality-of-care metrics, factors influencing their perception of value of new cancer drugs, the influence of cost on treatment decisions, and the perceptions of the reimbursement climate in the country. Physicians and medical directors specializing in oncology in the United States practicing for at least 2 years and managing at least 20 patients with cancer were randomly invited, from an online physician panel, to participate in an anonymous, cross-sectional, 15-minute online survey conducted between July and November 2014. The survey assessed physicians' level of support for the payment reform, use of quality-of-care metrics, factors influencing their perception of the value of a new cancer drug, the impact of cost on treatment decision-making, and their perceptions of the overall reimbursement climate. Descriptive statistics (chi-square tests and t-tests for discrete and continuous variables, respectively) were used to analyze the data. Logistic regression models were constructed to evaluate the main payment models described in the payment reform proposal. Of the 231 physicians and medical directors who participated in this study, approximately 50% strongly or somewhat supported the proposed payment reform. Stronger support was seen among survey respondents who were male, who rated the overall reimbursement climate as excellent/good, who have a contract with a commercial payer
The Nuclear Reactor Program at North Carolina State University provides the PULSTAR Research Reactor and associated facilities to eligible institutions with support, in part, from the Department of Energy Reactor Sharing Program. Participation in the NCSU Reactor Sharing Program continues to increase steadily with visitors ranging from advance high school physics and chemistry students to Ph.D. level research from neighboring universities
Andrés Felipe Ardila Rodríguez
Full Text Available The training strategies developed for the social support program bring deficits in accessibility to the chronic ill patients (EC and the CASSA-UDEC’s caretaker (CASSA-UDEC: Centre for Social Health Care at Universidad de Cundinamarca they do not have time to commute, hindering their legal relationship established by the contract. For this reason, a remote care platform (PTD was developed to support users at CASSA-UDEC improving aspects related to coverage, cost, quality, access and appropriation of information from caregivers and chronic ill patients. The design was based on gerontological constructs identifying features such as modularity, object size, usability, ergonomics, and some others, providing a friendly platform for the user with dynamic, modular and high usability content. The Platform provides a space for interaction and aid, which works as a dynamic entity in the job done by CASSA-UDEC giving support in the development of activities, expanding its coverage, access; all thanks to the benefits offered in a virtual mode.
Span, M.; Smits, C.; Groen-van der Ven, L.; Jukema, J.; Cremers, A.H.M.; Vernooij-Dassen, M.; Eefsting, J.; Hettinga, M.
People with dementia are confronted with many decisions. However, they are often not involved in the process of the decision-making. Shared Decision-Making (SDM) enables involvement of persons with dementia in the decision-making process. In our study, we develop a supportive IT application aiming
Bromer, Juliet; Henly, Julia R.
This paper presents a qualitative investigation of the work-family support roles of a sample of 29 child care providers serving low-income families in the Chicago area (16 family, friend, and neighbor providers (FFN), 7 licensed family child care providers (FCC), and 6 center-based teachers). Providers report offering low-income parents…
Scott, Anne; Doughty, Carolyn
The concept of "care" has been fraught with negative connotations within the disability movement; the concepts of empowerment, choice and control have been developed as alternatives. The peer-support movement in the mental health sector draws from this tradition, and is uncomfortable with the provision of care. Drawing on the feminist ethic of…
Higgins, P; Murray, M L; Williams, E M
This descriptive, retrospective study examined levels of self-esteem, social support, and satisfaction with prenatal care in 193 low-risk postpartal women who obtained adequate and inadequate care. The participants were drawn from a regional medical center and university teaching hospital in New Mexico. A demographic questionnaire, the Coopersmith self-esteem inventory, the personal resource questionnaire part 2, and the prenatal care satisfaction inventory were used for data collection. Significant differences were found in the level of education, income, insurance, and ethnicity between women who received adequate prenatal care and those who received inadequate care. Women who were likely to seek either adequate or inadequate prenatal care were those whose total family income was $10,000 to $19,999 per year and high school graduates. Statistically significant differences were found in self-esteem, social support, and satisfaction between the two groups of women. Strategies to enhance self-esteem and social support have to be developed to reach women at risk for receiving inadequate prenatal care.
Cortland, Clarissa I; Craig, Maureen A; Shapiro, Jenessa R; Richeson, Jennifer A; Neel, Rebecca; Goldstein, Noah J
Intergroup relations research has largely focused on relations between members of dominant groups and members of disadvantaged groups. The small body of work examining intraminority intergroup relations, or relations between members of different disadvantaged groups, reveals that salient experiences of ingroup discrimination promote positive relations between groups that share a dimension of identity (e.g., 2 different racial minority groups) and negative relations between groups that do not share a dimension of identity (e.g., a racial minority group and a sexual minority group). In the present work, we propose that shared experiences of discrimination between groups that do not share an identity dimension can be used as a lever to facilitate positive intraminority intergroup relations. Five experiments examining relations among 4 different disadvantaged groups supported this hypothesis. Both blatant (Experiments 1 and 3) and subtle (Experiments 2, 3, and 4) connections to shared experiences of discrimination, or inducing a similarity-seeking mindset in the context of discrimination faced by one's ingroup (Experiment 5), increased support for policies benefiting the outgroup (Experiments 1, 2, and 4) and reduced intergroup bias (Experiments 3, 4, and 5). Taken together, these experiments provide converging evidence that highlighting shared experiences of discrimination can improve intergroup outcomes between stigmatized groups across dimensions of social identity. Implications of these findings for intraminority intergroup relations are discussed. (PsycINFO Database Record (c) 2017 APA, all rights reserved).
Martin, Suzanne; Kelly, Greg; Kernohan, W George; McCreight, Bernadette; Nugent, Christopher
The integration of smart home technology to support health and social care is acquiring an increasing global significance. Provision is framed within the context of a rapidly changing population profile, which is impacting on the number of people requiring health and social care, workforce availability and the funding of healthcare systems. To explore the effectiveness of smart home technologies as an intervention for people with physical disability, cognitive impairment or learning disability, who are living at home, and to consider the impact on the individual's health status and on the financial resources of health care. We searched the following databases for primary studies: (a) the Cochrane Effective Practice and Organisation of Care (EPOC) Group Register, (b) the Cochrane Central Register of Controlled Trials (CENTRAL), (The Cochrane Library, issue 1, 2007), and (c) bibliographic databases, including MEDLINE (1966 to March 2007), EMBASE (1980 to March 2007) and CINAHL (1982 to March 2007). We also searched the Database of Abstracts of Reviews of Effectiveness (DARE). We searched the electronic databases using a strategy developed by the EPOC Trials Search Co-ordinator. We included randomised controlled trials (RCTs), quasi-experimental studies, controlled before and after studies (CBAs) and interrupted time series analyses (ITS). Participants included adults over the age of 18, living in their home in a community setting. Participants with a physical disability, dementia or a learning disability were included. The included interventions were social alarms, electronic assistive devices, telecare social alert platforms, environmental control systems, automated home environments and 'ubiquitous homes'. Outcome measures included any objective measure that records an impact on a participant's quality of life, healthcare professional workload, economic outcomes, costs to healthcare provider or costs to participant. We included measures of service satisfaction
Lipstein, Ellen A; Lindly, Olivia J; Anixt, Julia S; Britto, Maria T; Zuckerman, Katharine E
Shared decision making (SDM) is most needed when there are multiple treatment options and no "right" choice. As with quality and experience of care, frequency of SDM may vary by health condition. The objectives of this study were (1) to compare parent report of SDM between a physical and a behavioral health condition and; (2) to compare parent report of SDM between two different behavioral health conditions. Data on children age 3-17 years with asthma, attention deficit/hyperactivity disorder (ADHD), and/or autism spectrum disorder (ASD) were drawn from the 2009/10 National Survey of Children with Special Health Care Needs. Weighted logistic regression was used to compare a parent-reported, composite measure of SDM. Analyses controlled for sociodemographic factors that may influence experience of SDM. Compared to parents of children with asthma, parents of children with ADHD were significantly less likely to report experiencing consistent SDM (AOR 0.73). Compared to parents of children with ADHD, those of children with ASD had significantly lower odds of experiencing consistent SDM (AOR 0.59). Those with both ADHD and ASD had the same odds as those with ASD alone of experiencing consistent SDM. Use of SDM is particularly limited in developmental and behavioral conditions, such as ADHD and ASD. These data suggest that challenges to implementing SDM may include disease type, complexity, and use of specialty care. Research to identify specific barriers and facilitators of SDM is needed to inform interventions that will promote SDM in developmental and behavioral conditions.
Sandman, Lars; Munthe, Christian
In patient centred care, shared decision making is a central feature and widely referred to as a norm for patient centred medical consultation. However, it is far from clear how to distinguish SDM from standard models and ideals for medical decision making, such as paternalism and patient choice, and e.g., whether paternalism and patient choice can involve a greater degree of the sort of sharing involved in SDM and still retain their essential features. In the article, different versions of SDM are explored, versions compatible with paternalism and patient choice as well as versions that go beyond these traditional decision making models. Whenever SDM is discussed or introduced it is of importance to be clear over which of these different versions are being pursued, since they connect to basic values and ideals of health care in different ways. It is further argued that we have reason to pursue versions of SDM involving, what is called, a high level dynamics in medical decision-making. This leaves four alternative models to choose between depending on how we balance between the values of patient best interest, patient autonomy, and an effective decision in terms of patient compliance or adherence: Shared Rational Deliberative Patient Choice, Shared Rational Deliberative Paternalism, Shared Rational Deliberative Joint Decision, and Professionally Driven Best Interest Compromise. In relation to these models it is argued that we ideally should use the Shared Rational Deliberative Joint Decision model. However, when the patient and professional fail to reach consensus we will have reason to pursue the Professionally Driven Best Interest Compromise model since this will best harmonise between the different values at stake: patient best interest, patient autonomy, patient adherence and a continued care relationship.
Poort, Eltjo R.; Pramono, Agung; Perdeck, Michiel; Clerc, Viktor; van Vliet, Hans
This chapter presents the analysis and key findings of a survey on architectural knowledge sharing. The responses of 97 architects working in the Dutch IT Industry were analyzed by correlating practices and challenges with project size and success. Impact mechanisms between project size, project success, and architectural knowledge sharing practices and challenges were deduced based on reasoning, experience and literature. We find that architects run into numerous and diverse challenges sharing architectural knowledge, but that the only challenges that have a significant impact are the emotional challenges related to interpersonal relationships. Thus, architects should be careful when dealing with emotions in knowledge sharing.
de Vries, J.; Schepers, J.; van Weele, A.; van der Valk, W.
Manufacturing firms that outsource customer-facing services, risk losing touch with their customers and thereby forfeit valuable market and customer-related knowledge. To maintain informed and competitive, the manufacturer's customer-facing service partners should engage in knowledge sharing and
Vries, de J.J.A.P.; Schepers, J.J.L.; Weele, van A.J.; Valk, van der W.
Manufacturing firms that outsource customer-facing services, risk losing touch with their customers and thereby forfeit valuable market and customer-related knowledge. To maintain informed and competitive, the manufacturer's customer-facing service partners should engage in knowledge sharing and
Nomoto, Shinichi; Utsumi, Momoe; Sasayama, Satoshi; Dekigai, Hiroshi
We have developed a cloud system, the e-Renraku Notebook (e-RN) for sharing of home care information based on the concept of "patient-centricity". In order to assess the likelihood that our system will enhance the communication and sharing of information between home healthcare staff members and home-care patients, we selected patients who were residing in mountainous regions for inclusion in our study. We herein report the findings.Eighteen staff members from 7 medical facilities and 9 patients participated in the present study.The e-RN was developed for two reasons: to allow patients to independently report their health status and to have staff members view and respond to the information received. The patients and staff members were given iPads with the pre-installed applications and the information being exchanged was reviewed over a 54-day period.Information was mainly input by the patients (61.6%), followed by the nurses who performed home visits (19.9%). The amount of information input by patients requiring high-level nursing care and their corresponding staff member was significantly greater than that input by patients who required low-level of nursing care.This patient-centric system in which patients can independently report and share information with a member of the healthcare staff provides a sense of security. It also allows staff members to understand the patient's health status before making a home visit, thereby giving them a sense of security and confidence. It was also noteworthy that elderly patients requiring high-level nursing care and their staff counterpart input information in the system significantly more frequently than patients who required low-level care.
Miura, Kousei; Kadone, Hideki; Koda, Masao; Abe, Tetsuya; Kumagai, Hiroshi; Nagashima, Katsuya; Mataki, Kentaro; Fujii, Kengo; Noguchi, Hiroshi; Funayama, Toru; Kawamoto, Hiroaki; Sankai, Yoshiyuki; Yamazaki, Masashi
Work-related low back pain is a serious socioeconomic problem. This study examined whether HAL for Care Support, which is a newly developed wearable robot, would decrease lumbar fatigue and improve lifting performance during repetitive lifting movements. Eighteen healthy volunteers (11 men, 7 women) performed repetitive stoop lifting movements of a cardboard box weighing 12 kg as many times as possible. The first lifting trial was executed without HAL for Care Support, and the second was with it. We evaluated the VAS of lumbar fatigue as the lumbar load and the number of lifts and the lifting time as lifting performance. Without HAL for Care Support, the mean VAS of lumbar fatigue, the number of lifts and lifting time were 68 mm, 60 and 230 s; with HAL for Care Support, they were 51 mm, 87 and 332 s, respectively. Both lifting performance measures were significantly improved by using HAL for Care Support (Fig. 2). A power analysis showed that there was sufficient statistical power for the VAS of lumbar fatigue (0.99), the number of lifts (0.92), and lifting time (0.93). All participants performed their repetitive lifting trials safely. There were no adverse events caused by using HAL for Care Support. In conclusion, the HAL for Care Support can decrease lumbar load and improve the lifting performance during repetitive stoop lifting movements in healthy adults. Copyright © 2018. Published by Elsevier Ltd.
Brady, T J
This article reviews narrative and empiric studies in rheumatology and related literature to explicate the patient's role in rheumatology care. In contrast to early conceptualizations, such as Parsons' sick role that emphasized compliance, current literature describes chronic disease patients as active participants in their care, rather than passive recipients of care. Active patients roles include participant in shared decision making, self-manager, and help and information seeker. All of these roles are colored by the individual's need to preserve a personally defined acceptable lifestyle. Suggestions for strategies that physicians and health professionals can use to engage and support these essential patient roles are also reviewed.
Jackson, Sara L; Mejilla, Roanne; Darer, Jonathan D; Oster, Natalia V; Ralston, James D; Leveille, Suzanne G; Walker, Jan; Delbanco, Tom; Elmore, Joann G
Inviting patients to read their primary care visit notes may improve communication and help them engage more actively in their health care. Little is known about how patients will use the opportunity to share their visit notes with family members or caregivers, or what the benefits might be. Our goal was to evaluate the characteristics of patients who reported sharing their visit notes during the course of the study, including their views on associated benefits and risks. The OpenNotes study invited patients to access their primary care providers' visit notes in Massachusetts, Pennsylvania, and Washington. Pre- and post-intervention surveys assessed patient demographics, standardized measures of patient-doctor communication, sharing of visit notes with others during the study, and specific health behaviors reflecting the potential benefits and risks of offering patients easy access to their visit notes. More than half (55.43%, 2503/4516) of the participants who reported viewing at least one visit note would like the option of letting family members or friends have their own Web access to their visit notes, and 21.70% (980/4516) reported sharing their visit notes with someone during the study year. Men, and those retired or unable to work, were significantly more likely to share visit notes, and those sharing were neither more nor less concerned about their privacy than were non-sharers. Compared to participants who did not share clinic notes, those who shared were more likely to report taking better care of themselves and taking their medications as prescribed, after adjustment for age, gender, employment status, and study site. One in five OpenNotes patients shared a visit note with someone, and those sharing Web access to their visit notes reported better adherence to self-care and medications. As health information technology systems increase patients' ability to access their medical records, facilitating access to caregivers may improve perceived health
Larsen, Simon Bo
of the patient in collaboration with patient and home care clinicians. My main research method has been qualitative analysis of the empirical results generated during an experimental project using Participatory Design (PD) to investigate potential futures in the treatment of patients with diabetic foot ulcers...... the need arises for moving treatment and care involving specialised knowledge from the hospital to the home. In this dissertation I use the term Home Care" for the multidisciplinary investigation of how this movement can be supported with technology enabling the expert to carry on a treatment in the home...... approach that I outline in this dissertation. Furthermore I describe the results of the project contributing to three related scientific fields: home care technologies, telemedicine and computer supported cooperative work (CSCW). The main conclusion towards home care technologies is that the many visionary...
Selby, Kevin; Auer, Reto; Cornuz, Jacques
Switzerland with its decentralized, liberal health system and its tradition of direct democracy may be an ideal place for shared decision making (SDM) to take root organically, rather than using top-down regulations seen in other countries. There are now multiple directives and programmes in place to encourage SDM, with the creation of several decision aids and specific training programs in the five Swiss medical schools. There has been an emphasis on preventive care, with the integration of patient preference into an organized colorectal cancer screening program, clear recommendations for prostate cancer screening, and inroads into the primary prevention of cardiovascular disease. Focusing on the experience of the University of Lausanne, we describe multiple approaches being taken to teaching SDM and the local development of decision aids, drawing on international experience but tailored to local needs. Efforts are being made to further involve patients in not only SDM, but also associated research and quality improvement projects. Copyright © 2017. Published by Elsevier GmbH.
Mohebi, Siamak; Parham, Mahmoud; Sharifirad, Gholamreza; Gharlipour, Zabihollah; Mohammadbeigi, Abolfazl; Rajati, Fatemeh
Social support is one of the most effective factors on the diabetic self-care. This study aimed to assess social support and its relationship to self-care in type 2 diabetic patients in Qom, Iran. A cross-sectional study was conducted on 325 diabetics attending the Diabetes Mellitus Association. Patients who meet inclusion and exclusion criteria were selected using random sampling method. Data were collected by the Summary of Diabetes Self-Care Activities and Multidimensional Scale of Perceived Social Support, with hemoglobin A 1 C test. Data were analyzed using descriptive statistics and independent t -test, analysis of variance, Pearson correlation, and linear regression test, using 0.05 as the critical significance level, provided by SPSS software. The mean and standard deviation of self-care and social support scores were 4.31 ± 2.7 and 50.32 ± 11.09, respectively. The mean level of glycosylated hemoglobin (HbA 1 C) of patients was 7.54. There was a significant difference between mean score of self-care behaviors and social support according to gender and marital status ( P social support significantly correlated ( r = 0.489, P > 0.001) and also predictive power of social support was 0.28. Self-care was significantly better in diabetics with HbA 1 C ≤7%. Patients who had higher HbA 1 C felt less, but not significant, social support. This study indicated the relationship between social support and self-care behaviors in type 2 diabetic patients. Interventions that focus on improving the social support and self-care of diabetic control may be more effective in improving glycemic control.
Full Text Available Most of the existing verification techniques for message-passing programs suppose either that channel endpoints are used in a linear fashion, where at most one thread may send or receive from an endpoint at any given time, or that endpoints may be used arbitrarily by any number of threads. The former approach usually forbids the sharing of channels while the latter limits what is provable about programs. In this paper we propose a midpoint between these techniques by extending a proof system based on separation logic to allow sharing of endpoints. We identify two independent mechanisms for supporting sharing: an extension of fractional shares to endpoints, and a new technique based on what we call reflexive ownership transfer. We demonstrate on a number of examples that a linear treatment of sharing is possible.
Jefford, Michael; Kinnane, Nicole; Howell, Paula; Nolte, Linda; Galetakis, Spiridoula; Bruce Mann, Gregory; Naccarella, Lucio; Lai-Kwon, Julia; Simons, Katherine; Avery, Sharon; Thompson, Kate; Ashley, David; Haskett, Martin; Davies, Elise; Whitfield, Kathryn
The American Society of Clinical Oncology and US Institute of Medicine emphasize the need to trial novel models of posttreatment care, and disseminate findings. In 2011, the Victorian State Government (Australia) established the Victorian Cancer Survivorship Program (VCSP), funding six 2-year demonstration projects, targeting end of initial cancer treatment. Projects considered various models, enrolling people of differing cancer types, age and residential areas. We sought to determine common enablers of success, as well as challenges/barriers. Throughout the duration of the projects, a formal "community of practice" met regularly to share experiences. Projects provided regular formal progress reports. An analysis framework was developed to synthesize key themes and identify critical enablers and challenges. Two external reviewers examined final project reports. Discussion with project teams clarified content. Survivors reported interventions to be acceptable, appropriate and effective. Strong clinical leadership was identified as a critical success factor. Workforce education was recognized as important. Partnerships with consumers, primary care and community organizations; risk stratified pathways with rapid re-access to specialist care; and early preparation for survivorship, self-management and shared care models supported positive project outcomes. Tailoring care to individual needs and predicted risks was supported. Challenges included: lack of valid assessment and prediction tools; limited evidence to support novel care models; workforce redesign; and effective engagement with community-based care and issues around survivorship terminology. The VCSP project outcomes have added to growing evidence around posttreatment care. Future projects should consider the identified enablers and challenges when designing and implementing survivorship care. © 2015 Wiley Publishing Asia Pty Ltd.
Müller, Veronika; Tamási, Lilla; Gálffy, Gabriella; Losonczy, György
Active oncotherapy, combination chemotherapy of lung cancer is accompanied with many side effects which may impair patients' quality of life and compromise the effectiveness of chemotherapy. Most side effects of chemotherapy are preventable or treatable with optimal supportive care which enhances success in patient care and treatment. The aim of this review is to summarize the most important conditions that may be associated with combined chemotherapy of lung cancer from the practical point of view.
Uhle, M. E.
Most research funding agencies have data policies that grantees must abide to receive financial support for projects and activities. These policies however are typically not uniform, can be inconsistent and in some cases, can be contradictory preventing national and international collaboration. In addition, disciplinary divisions within a single agency may implement agency policy differently. These barriers are particularly profound for multi, inter- and/or transdisciplinary research needed to address many global environmental challenges. Recognizing the crucial role of open and effective data and information exchange to support effective international transdisciplinary research for understanding, mitigating and adapting to global environmental change, the Belmont Forum adopted Open Data Policy and Principles in 2015. This policy signals a commitment by these 25 funders to increase access to scientific data, a step widely recognized as essential to making informed decisions in the face of rapid changes affecting the Earth's environment. Through collaborative research actions and community driven activities, the Belmont Forum seeks to widen access to data, and promote its long-term preservation in global change research; encourage re-use of existing data; help improve data management and exploitation; coordinate and integrate disparate organizational and technical elements; fill critical global e-infrastructure gaps; share best practices; and foster new data literacy.
Silvester, Brett V; Carr, Simon J
A shared electronic health record system has been successfully implemented in Australia by a Division of General Practice in northern Brisbane. The system grew out of coordinated care trials that showed the critical need to share summary patient information, particularly for patients with complex conditions who require the services of a wide range of multisector, multidisciplinary health care professionals. As at 30 April 2008, connected users of the system included 239 GPs from 66 general practices, two major public hospitals, three large private hospitals, 11 allied health and community-based provider organisations and 1108 registered patients. Access data showed a patient's shared record was accessed an average of 15 times over a 12-month period. The success of the Brisbane implementation relied on seven key factors: connectivity, interoperability, change management, clinical leadership, targeted patient involvement, information at the point of care, and governance. The Australian Commission on Safety and Quality in Health Care is currently evaluating the system for its potential to reduce errors relating to inadequate information transfer during clinical handover.
Full Text Available The article explores the possibilities of formalizing and explaining the mechanisms that support spatial and social perspective alignment sustained over the duration of a social interaction. The basic proposed principle is that in social contexts the mechanisms for sensorimotor transformations and multisensory integration (learn to incorporate information relative to the other actor(s, similar to the "re-calibration" of visual receptive fields in response to repeated tool use. This process aligns or merges the co-actors' spatial representations and creates a "Shared Action Space" supporting key computations of social interactions and joint actions; for example, the remapping between the coordinate systems and frames of reference of the co-actors, including perspective taking, the sensorimotor transformations required for lifting jointly an object, and the predictions of the sensory effects of such joint action. The social re-calibration is proposed to be based on common basis function maps and could constitute an optimal solution to sensorimotor transformation and multisensory integration in joint action or more in general social interaction contexts. However, certain situations such as discrepant postural and viewpoint alignment and associated differences in perspectives between the co-actors could constrain the process quite differently. We discuss how alignment is achieved in the first place, and how it is maintained over time, providing a taxonomy of various forms and mechanisms of space alignment and overlap based, for instance, on automaticity vs. control of the transformations between the two agents. Finally, we discuss the link between low-level mechanisms for the sharing of space and high-level mechanisms for the sharing of cognitive representations.
McIntyre, Deborah; Fleming, Jennifer; Foster, Michele; Tweedy, Sean
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 i