WorldWideScience

Sample records for chronic illness care

  1. An intelligent partner system for improving chronic illness care

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    Tibor Deutsch

    2003-02-01

    Full Text Available Chronic care consists of a sequence of actions to treat a specific clinical disorder over time as a function of the ways in which illness progresses and patients respond to management actions. Outcomes depend on physicians' skills to select the actions best suited for their patients and competent self-management. This paper presents the architecture of an intelligent partner system (IPS, which helps to provide doctors with relevant data and skills and empowers chronically ill patients with the information and confidence to manage their health wisely. The services of this intelligent system are presented as 'therapies' for the information-processing 'pathologies' associated with traditional chronic illness care.

  2. Family caregivers: Competence in the care of the chronically ill

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    Olga Marina Vega Angarita

    2018-01-01

    Full Text Available Introduction: Because of the high demand and costs of care, chronic diseases have shown an increasing number of caregivers who develop their role without the required training and skill. Objective: To describe the capacity for home care of caregivers of patients with chronic illness in a service provider institution of San José de Cúcuta. Materials and methods: Descriptive quantitative cross-sectional study, developed in the fi rst half of 2017. The sample was composed by 360 caregivers of patients with chronic disease. We used the instruments developed by the Chronic Patient Care Group of the Faculty of Nursing of the National University of Colombia called: GCPC-UN-C © - technical characterization chart for family caregivers of patients with chronic non-transferable disease and the instrument “Caring” - short version to measure the competence of care at home. Results: In the study, low and medium levels of competence of the caregivers were reported in the exercise of their role, and the categories Knowledge and Enjoyment (Welfare were more affected. It is important to note that caregivers with a high level of competence were not reported. Conclusion: The results show that the need for nursing intervention in strengthening the competence of caregivers remains an important constant of professional performance.

  3. Collaborative Chronic Care Networks (C3Ns) to transform chronic illness care.

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    Margolis, Peter A; Peterson, Laura E; Seid, Michael

    2013-06-01

    Despite significant gains by pediatric collaborative improvement networks, the overall US system of chronic illness care does not work well. A new paradigm is needed: a Collaborative Chronic Care Network (C3N). A C3N is a network-based production system that harnesses the collective intelligence of patients, clinicians, and researchers and distributes the production of knowledge, information, and know-how over large groups of people, dramatically accelerating the discovery process. A C3N is a platform of "operating systems" on which interconnected processes and interventions are designed, tested, and implemented. The social operating system is facilitated by community building, engaging all stakeholders and their expertise, and providing multiple ways to participate. Standard progress measures and a robust information technology infrastructure enable the technical operating system to reduce unwanted variation and adopt advances more rapidly. A structured approach to innovation design provides a scientific operating system or "laboratory" for what works and how to make it work. Data support testing and research on multiple levels: comparative effectiveness research for populations, evaluating care delivery processes at the care center level, and N-of-1 trials and other methods to select the best treatment of individual patient circumstances. Methods to reduce transactional costs to participate include a Federated IRB Model in which centers rely on a protocol approved at 1 central institutional review board and a "commons framework" for organizational copyright and intellectual property concerns. A fully realized C3N represents a discontinuous leap to a self-developing learning health system capable of producing a qualitatively different approach to improving health.

  4. A literature review on self-care of chronic illness: definition, assessment and related outcomes.

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    Ausili, Davide; Masotto, Matteo; Dall'Ora, Chiara; Salvini, Lorena; Di Mauro, Stefania

    2014-01-01

    Chronic illnesses care represents a challenging issue for people well-being and future health systems' sustainability. Promotion of self-care is considered a key point for chronically ill patients' care. The aim of this literature was to explore: how self-care of chronic illness has been theoretically defined; how self-care can be assessed in clinical and research settings; what associations exist between self-care and health outcomes of chronically ill patients. A wide range of definitions and terminologies related to self-care of chronic illness has been found in the literature. Although some common elements useful to explain the concept of self-care have been identified, the physical, cognitive, emotional and social processes underlying self-care remain controversial and poorly defined. Valid and reliable disease-specific assessment tools have been developed and used in a growing number of studies; however, the lack of utilization of standardized instruments in clinical practice has been referred by many authors. Significant correlations between self-care of chronic illness and outcome measures e.g. general health status, quality of life and healthcare costs, are reported by a limited number of studies. Supporting patient self-care is recognized as a crucial factor in chronic illness care. A deeper analysis of variables and processes influencing self-care could help for a full description of the phenomenon. A systematic evaluation of self-care in health professionals' everyday clinical practice is strongly recommended. The development of general non-disease-specific assessment tools could facilitate the evaluation of complex patients, especially those with multiple co-morbidities. Although self-care has been recognized as a vital intermediate outcome, further large-scale studies clarifying the association between self-care and patients' and health systems' outcomes are needed.

  5. Pre-travel care for immunocompromised and chronically ill travellers: A retrospective study

    NARCIS (Netherlands)

    van Aalst, Mariëlle; Verhoeven, Roos; Omar, Freshta; Stijnis, Cornelis; van Vugt, Michèle; de Bree, Godelieve J.; Goorhuis, Abraham; Grobusch, Martin P.

    2017-01-01

    Background: Immunocompromised and chronically ill travellers (ICCITs) are susceptible to travel related diseases. In ICCITs, pre-travel care regarding vaccinations and prophylactics is complex. We evaluated the protection level by preventive measures in ICCITs by analysing rates of vaccination

  6. Does trust in health care influence the use of complementary and alternative medicine by chronically ill people.

    NARCIS (Netherlands)

    Brink-Muinen, A. van den; Rijken, P.M.

    2006-01-01

    Background: People's trust in health care and health care professionals is essential for the effectiveness of health care, especially for chronically ill people, since chronic diseases are by definition (partly) incurable. Therefore, it may be understandable that chronically ill people turn to

  7. Care meanings, expressions, and experiences of those with chronic mental illness.

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    George, Tamara B

    2002-02-01

    The care meanings, expressions, and experiences of those with a chronic mental illness living in the community were explored with use of Leininger's Theory of Culture Care Diversity and Universality and the Sunrise Model. Results indicate that people with chronic mental illness have identifiable values, norms, and lifeways that set them apart from the dominant culture. Cultural and social structure factors, ethnohistory, and environmental context influence their desired care. Nurses can use this knowledge to provide culturally congruent care in new ways to enhance the quality of life, productivity, and well-being of this subculture. Copyright 2002 by W.B. Saunders Company

  8. Perceived quality of chronic illness care is associated with self-management: Results of a nationwide study in the Netherlands.

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    van Houtum, L; Heijmans, M; Rijken, M; Groenewegen, P

    2016-04-01

    Healthcare providers are increasingly expected to help chronically ill patients understand their own central role in managing their illness. The aim of this study was to determine whether experiencing high-quality chronic illness care and having a nurse involved in their care relate to chronically ill people's self-management. Survey data from 699 people diagnosed with chronic diseases who participated in a nationwide Dutch panel-study were analysed using linear regression analysis, to estimate the association between chronic illness care and various aspects of patients' self-management, while controlling for their socio-demographic and illness characteristics. Chronically ill patients reported that the care they received was of high quality to some extent. Patients who had contact with a practise nurse or specialised nurse perceived the quality of the care they received as better than patients who only had contact with a GP or medical specialist. Patients' perceptions of the quality of care were positively related to all aspects of their self-management, whereas contact with a practise nurse or specialised nurse in itself was not. Chronically ill patients who have the experience to receive high-quality chronic illness care that focusses on patient activation, decision support, goal setting, problem solving, and coordination of care are better self-managers. Having a nurse involved in their care seems to be positively valued by chronically ill patients, but does not automatically imply better self-management. Copyright © 2016. Published by Elsevier Ireland Ltd.

  9. Does trust in health care influence the use of complementary and alternative medicine by chronically ill patients?

    NARCIS (Netherlands)

    Brink-Muinen, A. van den; Rijken, M.

    2006-01-01

    Background: Patients’ trust in health care (professionals) is essential for the effectiveness of health care, especially for chronically ill patients, since chronic diseases are by definition (partly) incurable. Therefore, it may be understandable that the chronically ill turn to complementary and

  10. Patient outcomes for the chronically critically ill: special care unit versus intensive care unit.

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    Rudy, E B; Daly, B J; Douglas, S; Montenegro, H D; Song, R; Dyer, M A

    1995-01-01

    The purpose of this study was to compare the effects of a low-technology environment of care and a nurse case management case delivery system (special care unit, SCU) with the traditional high-technology environment (ICU) and primary nursing care delivery system on the patient outcomes of length of stay, mortality, readmission, complications, satisfaction, and cost. A sample of 220 chronically critically ill patients were randomly assigned to either the SCU (n = 145) or the ICU (n = 75). Few significant differences were found between the two groups in length of stay, mortality, or complications. However, the findings showed significant cost savings in the SCU group in the charges accrued during the study period and in the charges and costs to produce a survivor. The average total cost of delivering care was $5,000 less per patient in the SCU than in the traditional ICU. In addition, the cost to produce a survivor was $19,000 less in the SCU. Results from this 4-year clinical trial demonstrate that nurse case managers in a SCU setting can produce patient outcomes equal to or better than those in the traditional ICU care environment for long-term critically ill patients.

  11. Patient-Assessed Chronic Illness Care (PACIC scenario in an Indian homeopathic hospital

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    Munmun Koley

    2016-01-01

    Full Text Available Homeopathy research has focused on chronic conditions; however, the extent to which current homeopathic care is compliant with the Chronic Care Model (CCM has been sparsely shown. As the Bengali Patient-Assessed Chronic Illness Care (PACIC-20 was not available, the English questionnaire was translated and evaluated in a government homeopathic hospital in West Bengal, India. The translation was done in six steps, and approved by an expert committee. Face validity was tested by 15 people for comprehension. Test/retest reliability (reproducibility was tested on 30 patients with chronic conditions. Internal consistency was tested in 377 patients suffering from various chronic conditions. The questionnaire showed acceptable test/retest reliability [intraclass correlation coefficient (ICC 0.57–0.75; positive to strong positive correlations; p0.05; however, monthly household income had a significant influence (p<0.05 on the subscales except for “delivery system or practice design.” Overall, chronic illness care appeared to be quite promising and CCM-compliant. The psychometric properties of the Bengali PACIC-20 were satisfactory, rendering it a valid and reliable instrument for assessing chronic illness care among the patients attending a homeopathic hospital.

  12. Describing and analysing primary health care system support for chronic illness care in Indigenous communities in Australia's Northern Territory – use of the Chronic Care Model

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    Stewart Allison

    2008-05-01

    Full Text Available Abstract Background Indigenous Australians experience disproportionately high prevalence of, and morbidity and mortality from chronic illness such as diabetes, renal disease and cardiovascular disease. Improving the understanding of how Indigenous primary care systems are organised to deliver chronic illness care will inform efforts to improve the quality of care for Indigenous people. Methods This cross-sectional study was conducted in 12 Indigenous communities in Australia's Northern Territory. Using the Chronic Care Model as a framework, we carried out a mail-out survey to collect information on material, financial and human resources relating to chronic illness care in participating health centres. Follow up face-to-face interviews with health centre staff were conducted to identify successes and difficulties in the systems in relation to providing chronic illness care to community members. Results Participating health centres had distinct areas of strength and weakness in each component of systems: 1 organisational influence – strengthened by inclusion of chronic illness goals in business plans, appointment of designated chronic disease coordinators and introduction of external clinical audits, but weakened by lack of training in disease prevention and health promotion and limited access to Medicare funding; 2 community linkages – facilitated by working together with community organisations (e.g. local stores and running community-based programs (e.g. "health week", but detracted by a shortage of staff especially of Aboriginal health workers working in the community; 3 self management – promoted through patient education and goal setting with clients, but impeded by limited focus on family and community-based activities due to understaffing; 4 decision support – facilitated by distribution of clinical guidelines and their integration with daily care, but limited by inadequate access to and support from specialists; 5 delivery system

  13. Managed care and the delivery of primary care to the elderly and the chronically ill.

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    Wholey, D R; Burns, L R; Lavizzo-Mourey, R

    1998-06-01

    To analyze primary care staffing in HMOs and to review the literature on primary care organization and performance in managed care organizations, with an emphasis on the delivery of primary care to the elderly and chronically ill. Analysis of primary care staffing: InterStudy HMO census data on primary care (n = 1,956) and specialist (n = 1,777) physician staffing levels from 1991 through 1995. Primary care organization and performance for the chronically ill and elderly were analyzed using a review of published research. For the staffing-level models, the number of primary care and specialist physicians per 100,000 enrollees was regressed on HMO characteristics (HMO type [group, staff, network, mixed], HMO enrollment, federal qualification, profit status, national affiliation) and community characteristics (per capita income, population density, service area size, HMO competition). For the review of organization and performance, literature published was summarized in a tabular format. The analysis of physician staffing shows that group and staff HMOs have fewer primary care and specialist physicians per 100,000 enrollees than do network and mixed HMOs, which have fewer than IPAs. Larger HMOs use fewer physicians per 100,000 enrollees than smaller HMOs. Federally qualified HMOs have fewer primary care and specialist physicians per 100,000 enrollees. For-profit, nationally affiliated, and Blue Cross HMOs have more primary care and specialist physicians than do local HMOs. HMOs in areas with high per capita income have more PCPs per 100,000 and a greater proportion of PCPs in the panel. HMO penetration decreases the use of specialists, but the number of HMOs increases the use of primary care and specialist physicians in highly competitive markets. Under very competitive conditions, HMOs appear to compete by increasing access to both PCPs and specialists, with a greater emphasis on access to specialists. The review of research on HMO performance suggests that access

  14. Improving quality in Medicaid: the use of care management processes for chronic illness and preventive care.

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    Rittenhouse, Diane R; Robinson, James C

    2006-01-01

    Care management processes (CMPs), tools to improve the efficiency and quality of primary care delivery, are particularly important for low-income patients facing substantial barriers to care. To measure the adoption of CMPs by medical groups, Independent Practice Associations, community clinics, and hospital-based clinics in California's Medicaid program and the factors associated with CMP adoption. Telephone survey of every provider organization with at least 6 primary care physicians and at least 1 Medi-Cal HMO contract, Spring 2003. One hundred twenty-three organizations participated, accounting for 64% of provider organizations serving Medicaid managed care in California. We surveyed 30 measures of CMP use for asthma and diabetes, and for child and adolescent preventive services. The mean number of CMPs used by each organization was 4.5 for asthma and 4.9 for diabetes (of a possible 8). The mean number of CMPs for preventive services was 4.0 for children and 3.5 for adolescents (of a possible 7). Organizations with more extensive involvement in Medi-Cal managed care used more CMPs for chronic illness and preventive service. Community clinics and hospital-based clinics used more CMPs for asthma and diabetes than did Independent Practice Associations (IPAs), and profitable organizations used more CMPs for child and adolescent preventive services than did entities facing severe financial constraints. The use of CMPs by Medicaid HMOs and the presence of external (financial and nonfinancial) incentives for clinical performance were strongly associated with use of care management by provider organizations. Physician and provider organizations heavily involved in California's Medicaid program are extensively engaged in preventive and chronic care management programs.

  15. Evaluating Diabetes Care for Patients With Serious Mental Illness Using the Chronic Care Model

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    Kelly Vaez

    2017-10-01

    Full Text Available People with serious mental illness (SMI have a higher incidence of type 2 diabetes mellitus (T2DM and shorter life span due to medical health problems. The chronic care model (CCM has been used to improve care of patients with T2DM. One clinical organization that provided primary care to patients with SMI had excellent diabetes outcomes but did not have information on how they achieved those outcomes. Thus, we conducted a pilot study chart review for 30 patients with T2DM and SMI to determine how well the clinic’s system aligned with the overall CCM components and which components correlated with diabetes control. We also evaluated use of the CCM using the Assessment of Chronic Illness Care provider survey. Results showed that the clinic had an overall basic implementation level of the CCM, which allows opportunity for improvement. Two elements of the CCM were correlated with hemoglobin A 1C and both were in an unexpected direction: self-management support in the variable of percentage of visits that included patient-specific goal-setting ( r s = .52; P = .004 and delivery system design in the variable of number of nurse practitioner visits per study period ( r s = .43; P = .02. These findings suggest that the clinic may have made more concentrated efforts to manage diabetes for patients who were not in good diabetes control. Providers noted the influence of SMI and social service organization support on these patients’ clinical outcomes. The findings will be reexamined after a fuller implementation of the CCM to further improve management in this population.

  16. Home Care for Children with Chronic Illnesses and Severe Disabilities: A Bibliography and Resource Guide.

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    Wells, Alice; And Others

    The bibliography and resource guide summarizes relevant research and information on home care for children with disabilities and chronic illnesses, including those with such diagnoses as spina bifida, cerebral palsy, severe mental retardation, acquired immune deficiency syndrome (AIDS), hemophilia, sickle cell anemia, autism, or failure-to-thrive…

  17. Does trust in health care influence the use of complementary and alternative medicine by chronically ill people?

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    Rijken PM

    2006-07-01

    Full Text Available Abstract Background People's trust in health care and health care professionals is essential for the effectiveness of health care, especially for chronically ill people, since chronic diseases are by definition (partly incurable. Therefore, it may be understandable that chronically ill people turn to complementary and alternative medicine (CAM, often in addition to regular care. Chronically ill people use CAM two to five times more often than non-chronically ill people. The trust of chronically ill people in health care and health care professionals and the relationship of this with CAM use have not been reported until now. In this study, we examine the influence of chronically ill people's trust in health care and health care professionals on CAM use. Methods The present sample comprises respondents of the 'Panel of Patients with Chronic Diseases' (PPCD. Patients (≥25 years were selected by GPs. A total of 1,625 chronically ill people were included. Trust and CAM use was measured by a written questionnaire. Statistical analyses were t tests for independent samples, Chi-square and one-way analysis of variance, and logistic regression analysis. Results Chronically ill people have a relatively low level of trust in future health care. They trust certified alternative practitioners less than regular health care professionals, and non-certified alternative practitioners less still. The less trust patients have in future health care, the more they will be inclined to use CAM, when controlling for socio-demographic and disease characteristics. Conclusion Trust in future health care is a significant predictor of CAM use. Chronically ill people's use of CAM may increase in the near future. Health policy makers should, therefore, be alert to the quality of practising alternative practitioners, for example by insisting on professional certification. Equally, good quality may increase people's trust in public health care.

  18. Disease-management partnership functioning, synergy and effectiveness in delivering chronic-illness care.

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    Cramm, Jane Murray; Nieboer, Anna Petra

    2012-06-01

    This study explored associations among disease-management partnership functioning, synergy and effectiveness in the delivery of chronic-illness care. This study had a cross-sectional design. The study sample consists of 218 professionals (out of 393) participating in 22 disease-management partnerships in various regions of the Netherlands. We assessed the relationships among partnership functioning, synergy and effectiveness in the delivery of chronic-illness care. Partnership functioning was assessed through leadership, resources, administration and efficiency. Synergy was considered the proximal outcome of partnership functioning, which, in turn, influenced the effectiveness of disease-management partnerships [measured with the Assessment of Chronic Illness Care (ACIC) survey instrument]. Overall ACIC scores ranged from 3 to 10, indicating basic/intermediate to optimal/comprehensive delivery of chronic-illness care. The results of the regression analysis demonstrate that partnership effectiveness was positively associated with leadership (β = 0.25; P≤ 0.01), and resources (β = 0.31; P≤ 0.001). No significant relationship was found between administration, efficiency and partnership effectiveness. Partnership synergy acted as a mediator for partnership functioning and was statistically significantly associated with partnership effectiveness (β = 0.25; P≤ 0.001). Disease-management partnerships seemed better able to deliver higher levels of chronic-illness care when synergy is created between partners. Synergy was more likely to emerge with boundary-spanning leaders who understood and appreciated partners' different perspectives, could bridge their diverse cultures and were comfortable sharing ideas, resources and power. In addition, the acknowledgement of and ability to use members' resources are valuable in engaging partners' involvement and achieving synergy in disease-management partnerships.

  19. Prediction of chronic critical illness in a general intensive care unit

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    Sérgio H. Loss

    2013-06-01

    Full Text Available OBJECTIVE: To assess the incidence, costs, and mortality associated with chronic critical illness (CCI, and to identify clinical predictors of CCI in a general intensive care unit. METHODS: This was a prospective observational cohort study. All patients receiving supportive treatment for over 20 days were considered chronically critically ill and eligible for the study. After applying the exclusion criteria, 453 patients were analyzed. RESULTS: There was an 11% incidence of CCI. Total length of hospital stay, costs, and mortality were significantly higher among patients with CCI. Mechanical ventilation, sepsis, Glasgow score < 15, inadequate calorie intake, and higher body mass index were independent predictors for cci in the multivariate logistic regression model. CONCLUSIONS: CCI affects a distinctive population in intensive care units with higher mortality, costs, and prolonged hospitalization. Factors identifiable at the time of admission or during the first week in the intensive care unit can be used to predict CCI.

  20. Nonemergency medical transportation and health care visits among chronically ill urban and rural medicaid beneficiaries.

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    Thomas, Leela V; Wedel, Kenneth R

    2014-01-01

    Inaccessibility to health care services due to lack of transportation affects the most vulnerable segments of the society. The effect of Medicaid-provided nonemergency medical transportation (NEMT) in Oklahoma on health care visits for the management of chronic illnesses is examined. Analyses of claims data show that African Americans are the highest users of NEMT. Medicaid beneficiaries who use NEMT services are significantly more likely to make the recommended number of annual visits for the management of chronic conditions than those who do not use NEMT. Increased use of NEMT by making the services more accommodating and convenient for beneficiaries is proposed.

  1. [Social and organizational innovation to tackle the challenge of integrated care of the chronically ill].

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    Nuño-Solinís, Roberto

    2014-01-01

    The increase in life expectancy, coupled with other factors, has led to an increase in the prevalence of chronic diseases and multiple morbidity. This has led to the need to develop new health and social care models, which will allow managing these efficiently and in a sustainable manner. In particular, there seems to be consensus on the need to move towards integrated, patient-centered, and more proactive care. Thus, in recent years, chronic care models have been developed at international, national and regional level, as well as introducing strategies to tackle the challenge of chronic illness. However, the implementation of actions facilitating the change towards this new model of care does not seem to be an easy task. This paper presents some of the strategic lines and initiatives carried out by the Department of Health of the Basque Government. These actions can be described within a social and organizational innovation framework, as a means for effective implementation of interventions and strategies that shape the model required for the improved care of chronic illnesses within a universal and tax-funded health system. Copyright © 2013 Elsevier España, S.L. All rights reserved.

  2. Development and Validation of an Instrument for Assessing Patient Experience of Chronic Illness Care

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    José Joaquín Mira

    2016-08-01

    Full Text Available Introduction: The experience of chronic patients with the care they receive, fuelled by the focus on patient-centeredness and the increasing evidence on its positive relation with other dimensions of quality, is being acknowledged as a key element in improving the quality of care. There are a dearth of accepted tools and metrics to assess patient experience from the patient’s perspective that have been adapted to the new chronic care context: continued, systemic, with multidisciplinary teams and new technologies. Methods: Development and validation of a scale conducting a literature review, expert panel, pilot and field studies with 356 chronic primary care patients, to assess content and face validities and reliability. Results: IEXPAC is an 11+1 item scale with adequate metric properties measured by Alpha Chronbach, Goodness of fit index, and satisfactory convergence validity around three factors named: productive interactions, new relational model and person’s self-management. Conclusions: IEXPAC allows measurement of the patient experience of chronic illness care. Together with other indicators, IEXPAC can determine the quality of care provided according to the Triple Aim framework, facilitating health systems reorientation towards integrated patient-centred care.

  3. The Family Challenge of Caring for the Chronically Mentally Ill: A Phenomenological Study.

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    Shamsaei, Farshid; Cheraghi, Fatemeh; Esmaeilli, Ravanbakhsh

    2015-09-01

    Family caregiving for patients with chronic mental illness is influenced by various factors such as political, socioeconomic, and cultural contexts as well as related policies and health services. The purpose of this study was to explore the challenges with which the family caregivers of patients with chronic mental illness have to contend. The research design was qualitative with a phenomenological approach. The research population consisted of 16 long-term carers expressing interest in participating in the project. The carers were the family members of mentally ill relatives who collected their monthly medications at Farshchian Psychiatry Hospital in Hamadan in 2012. Purposive sampling was used to draw the sample. Data were collected by individual in-depth semi-structured interviews, which were tape-recorded and analyzed via Colaizzi's phenomenological method. Rigor was assessed regarding credibility, dependability, conformability, and transferability. Our findings highlighted 4 main themes, namely stress and emotional distress, need for education and information, socioeconomic effects and support, and physical strain. Families experience frustrations when providing support and care to their mentally ill relatives. They, therefore, need appropriate support and intervention by mental health services.

  4. Adaptation and validation of the patient assessment of chronic illness care in the French context.

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    Krucien, Nicolas; Le Vaillant, Marc; Pelletier-Fleury, Nathalie

    2014-06-19

    Chronic diseases are major causes of disability worldwide with rising prevalence. Most patients suffering from chronic conditions do not always receive optimal care. The Chronic Care Model (CCM) has been developed to help general practitioners making quality improvements. The Patient Assessment of Chronic Illness Care (PACIC) questionnaire was increasingly used in several countries to appraise the implementation of the CCM from the patients' perspective. The objective of this study was to adapt the PACIC questionnaire in the French context and to test the validity of this adaptation in a sample of patients with multiple chronic conditions. The PACIC was translated into French language using a forward/backward procedure. The French version was validated using a sample of 150 patients treated for obstructive sleep apnea syndrome (OSAS) and having multiple chronic co-morbidities. Several forms of validity were analysed: content; face; construct; and internal consistency. The construct validity was investigated with an exploratory factorial analysis. The French-version of the PACIC consisted in 18 items, after merging two pairs of items due to redundancy. The high number of items exhibiting floor/ceiling effects and the non-normality of the ratings suggested that a 5-points rating scale was somewhat inappropriate to assess the patients' experience of care. The construct validity of the French-PACIC was verified and resulted in a bi-dimensional structure. Overall this structure showed a high level of internal consistency. The PACIC score appeared to be significantly related to the age and self-reported health of the patients. A French-version of the PACIC questionnaire is now available to evaluate the patients' experience of care and to monitor the quality improvements realised by the medical structures. This study also pointed out some methodological issues about the PACIC questionnaire, related to the format of the rating scale and to the structure of the

  5. The role of team climate in improving the quality of chronic care delivery: a longitudinal study among professionals working with chronically ill adolescents in transitional care programmes.

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    Cramm, Jane M; Strating, Mathilde M H; Nieboer, Anna P

    2014-05-22

    This study aimed to (1) evaluate the effectiveness of implementing transition programmes in improving the quality of chronic care delivery and (2) identify the predictive role of (changes in) team climate on the quality of chronic care delivery over time. This longitudinal study was undertaken with professionals working in hospitals and rehabilitation units that participated in the transition programme 'On Your Own Feet Ahead!' in the Netherlands. A total of 145/180 respondents (80.6%) filled in the questionnaire at the beginning of the programme (T1), and 101/173 respondents (58.4%) did so 1 year later at the end of the programme (T2). A total of 90 (52%) respondents filled in the questionnaire at both time points. Two-tailed, paired t tests were used to investigate improvements over time and multilevel analyses to investigate the predictive role of (changes in) team climate on the quality of chronic care delivery. Transition programme. Quality of chronic care delivery measured with the Assessment of Chronic Illness Care Short version (ACIC-S). The overall ACIC-S score at T1 was 5.90, indicating basic or intermediate support for chronic care delivery. The mean ACIC-S score at T2 significantly improved to 6.70, indicating advanced support for chronic care. After adjusting for the quality of chronic care delivery at T1 and significant respondents' characteristics, multilevel regression analyses showed that team climate at T1 (pteam climate (pteam climate to enhance the quality of chronic care delivery to chronically ill adolescents. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  6. Individual care plans for chronically ill patients within primary care in the Netherlands: Dissemination and associations with patient characteristics and patient-perceived quality of care.

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    Jansen, Daphne L; Heijmans, Monique; Rijken, Mieke

    2015-06-01

    To examine the use of individual care plans (ICPs) within primary chronic illness care in the Netherlands, and to explore the relationships between ICP use, patient characteristics, and patient-perceived quality of care. Cross-sectional study using survey data from a panel of chronically ill patients and medical registration data provided by their general practices. A sample of 1377 patients with somatic chronic disease(s) randomly selected in general practices throughout the Netherlands, supplemented with a sample of 225 COPD patients, also recruited from general practices. (i) Percentage of ICP use based on self-report by chronically ill patients, and (ii) patient-perceived quality of care as assessed using the Patient Assessment of Chronic Illness Care (PACIC). ICP use among the total generic sample was low (9%), but slightly higher (13%) among patients diagnosed with diabetes or COPD, diseases for which disease management programmes have been set up in the Netherlands. Patients with a low educational level and patients with poor(er) self-rated health were more likely to have an ICP. Compared with patients without an ICP, patients with an ICP more often reported that the care they received was patient-centred, proactive, planned, and included collaborative goal setting, problem-solving, and follow-up support. Findings reveal a discrepancy between practice and policy aspirations regarding ICP use in primary chronic illness care. More research is needed to gain insight into the effectiveness of ICPs to improve the quality of chronic illness care in various patient populations.

  7. Life after the Shock! The Impact on Families of Caring for Young Children with Chronic Illness

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    Ashton, Jean

    2004-01-01

    The stresses experienced by most families include limitations on time, conditions of employment, financial burdens and sibling rivalry. For the families of a child with a chronic illness, these stresses are often compounded, making family functioning problematic. Chronic illness is marked by permanency and the need for ongoing vigilance with…

  8. Chronic illness and multimorbidity among problem drug users: a comparative cross sectional pilot study in primary care.

    LENUS (Irish Health Repository)

    Cullen, Walter

    2009-01-01

    BACKGROUND: Although multimorbidity has important implications for patient care in general practice, limited research has examined chronic illness and health service utilisation among problem drug users. This study aimed to determine chronic illness prevalence and health service utilisation among problem drug users attending primary care for methadone treatment, to compare these rates with matched \\'controls\\' and to develop and pilot test a valid study instrument. METHODS: A cross-sectional study of patients attending three large urban general practices in Dublin, Ireland for methadone treatment was conducted, and this sample was compared with a control group matched by practice, age, gender and General Medical Services (GMS) status. RESULTS: Data were collected on 114 patients. Fifty-seven patients were on methadone treatment, of whom 52(91%) had at least one chronic illness (other then substance use) and 39(68%) were prescribed at least one regular medication. Frequent utilisation of primary care services and secondary care services in the previous six months was observed among patients on methadone treatment and controls, although the former had significantly higher chronic illness prevalence and primary care contact rates. The study instrument facilitated data collection that was feasible and with minimal inter-observer variation. CONCLUSION: Multimorbidity is common among problem drug users attending general practice for methadone treatment. Primary care may therefore have an important role in primary and secondary prevention of chronic illnesses among this population. This study offers a feasible study instrument for further work on this issue. (238 words).

  9. Chronic illness and multimorbidity among problem drug users: a comparative cross sectional pilot study in primary care.

    LENUS (Irish Health Repository)

    Cullen, Walter

    2012-02-01

    BACKGROUND: Although multimorbidity has important implications for patient care in general practice, limited research has examined chronic illness and health service utilisation among problem drug users. This study aimed to determine chronic illness prevalence and health service utilisation among problem drug users attending primary care for methadone treatment, to compare these rates with matched \\'controls\\' and to develop and pilot test a valid study instrument. METHODS: A cross-sectional study of patients attending three large urban general practices in Dublin, Ireland for methadone treatment was conducted, and this sample was compared with a control group matched by practice, age, gender and General Medical Services (GMS) status. RESULTS: Data were collected on 114 patients. Fifty-seven patients were on methadone treatment, of whom 52(91%) had at least one chronic illness (other then substance use) and 39(68%) were prescribed at least one regular medication. Frequent utilisation of primary care services and secondary care services in the previous six months was observed among patients on methadone treatment and controls, although the former had significantly higher chronic illness prevalence and primary care contact rates. The study instrument facilitated data collection that was feasible and with minimal inter-observer variation. CONCLUSION: Multimorbidity is common among problem drug users attending general practice for methadone treatment. Primary care may therefore have an important role in primary and secondary prevention of chronic illnesses among this population. This study offers a feasible study instrument for further work on this issue. (238 words).

  10. “What we want”: chronically ill adolescents’ preferences and priorities for improving health care

    Directory of Open Access Journals (Sweden)

    van Staa A

    2011-06-01

    Full Text Available AnneLoes van Staa1,2, Susan Jedeloo1, Heleen van der Stege1, On Your Own Feet Research Group1,31Expertise Center Transitions of Care, Rotterdam University, 2Institute of Health Policy and Management, Erasmus University Rotterdam, 3Department of Pediatrics, Sophia Children’s Hospital, Erasmus MC University Medical Center, Rotterdam, The NetherlandsBackground: As important users of health care, adolescents with chronic conditions deserve to be consulted about their experiences and expectations. This study aimed to explore chronically ill adolescents’ preferences regarding providers' qualities, and outpatient and inpatient care. Furthermore, suggestions for improvement of service delivery were collected.Methods: This research was a sequential mixed methods study in adolescents aged 12–19 years with various chronic conditions treated in a university children’s hospital. Methods comprised 31 face-to-face interviews at home, a hospital-based peer research project in which nine adolescents interviewed 34 fellow patients, and a web-based questionnaire (n = 990. Emerging qualitative themes were transformed into questionnaire items.Results: Having “a feeling of trust” and “voice and choice” in the hospital were central to these adolescents. Regarding providers’ qualities, “being an expert” and “being trustworthy and honest” were ranked highest, followed by "being caring and understanding”, "listening and showing respect", and “being focused on me”. Regarding outpatient consultations, preferences were ranked as follows: “answering all questions”; “attending to my and my parents’ needs”; and “clear communication”, while “limited waiting times” and “attractive outpatient surroundings” scored lowest. Regarding hospitalization, adolescents most preferred to “avoid pain and discomfort”, “keep in touch with home”, and “be entertained”, while “being hospitalized with peers” and “being heard

  11. Opening the Door: The Experience of Chronic Critical Illness in a Long-Term Acute Care Hospital.

    Science.gov (United States)

    Lamas, Daniela J; Owens, Robert L; Nace, R Nicholas; Massaro, Anthony F; Pertsch, Nathan J; Gass, Jonathon; Bernacki, Rachelle E; Block, Susan D

    2017-04-01

    Chronically critically ill patients have recurrent infections, organ dysfunction, and at least half die within 1 year. They are frequently cared for in long-term acute care hospitals, yet little is known about their experience in this setting. Our objective was to explore the understanding and expectations and goals of these patients and surrogates. We conducted semi-structured interviews with chronically critically ill long-term acute care hospital patients or surrogates. Conversations were recorded, transcribed, and analyzed. One long-term acute care hospital. Chronically critically ill patients, defined by tracheotomy for prolonged mechanical ventilation, or surrogates. Semi-structured conversation about quality of life, expectations, and planning for setbacks. A total of 50 subjects (30 patients and 20 surrogates) were enrolled. Thematic analyses demonstrated: 1) poor quality of life for patients; 2) surrogate stress and anxiety; 3) optimistic health expectations; 4) poor planning for medical setbacks; and 5) disruptive care transitions. Nearly 80% of patient and their surrogate decision makers identified going home as a goal; 38% were at home at 1 year. Our study describes the experience of chronically critically ill patients and surrogates in an long-term acute care hospital and the feasibility of patient-focused research in this setting. Our findings indicate overly optimistic expectations about return home and unmet palliative care needs, suggesting the need for integration of palliative care within the long-term acute care hospital. Further research is also needed to more fully understand the challenges of this growing population of ICU survivors.

  12. Continuity in care of older people chronically ill patients in a battlefield of competing rationales

    DEFF Research Database (Denmark)

    Kjerholt, Mette; Wagner, Lis; Delmar, Charlotte

    2014-01-01

    professionals' communication concerning older patients, leading to lack of continuity and integration of the patient perspective in care and treatment. In spite of these problems being well investigated, they continue to prevail. OBJECTIVES: To examine conditions for continuity and integration of the patient...... perspective in older, chronically ill patients' care as reflected in nursing staff's communication about the patients. DESIGN: Explorative Participatory Action Research (PAR). SETTING: An acute, general medical ward at a Danish university hospital. PARTICIPANTS: Hospital and municipality nurses (n = 29......). Nursing records (n = 12). METHOD: Field studies: observations, interviews, nursing records audits and logs. Data were subject to manifest and latent content analysis. RESULTS: Participants were aware of the importance of ensuring continuity, a comprehensive approach and integration of the patient...

  13. The experiences of chronically ill patients and registered nurses when they negotiate patient care in hospital settings: a feminist poststructural approach: A qualitative study that explores negotiation of patient care between patients and chronically ill patients in hospital settings.

    Science.gov (United States)

    Griscti, Odette; Aston, Megan; Martin-Misener, Ruth; Mcleod, Deborah; Warner, Grace

    2016-07-01

    The aim of this study was to understand the experiences of chronically ill patients and registered nurse in negotiating patient care in hospital. Specifically, we explored how social and institutional discourses shaped power relations and negotiation of patient care. Current literature indicates that although nurses embrace this notion, such partnerships are not easily implemented. Most existing studies focus on the role of the nurse as the leader of the partnership with little attention paid to how social and institutional values, beliefs and practices shape nurse/patient power relations; or how these relationships are negotiated between nurses and patients. The theoretical and methodological approaches used in this study are based on the precepts of Foucault and feminist poststructural theorists. In depth interviews were conducted with eight chronically ill patients and 10 registered nurses. Both nurses and patients commented about the relationships that develop between nurses and chronically ill patients and how these relationships facilitate negotiation of patient care. Both parties described challenging moments and how institutional discourses may hinder positive negotiations of care. In this paper we highlight three themes that emerged: getting to know each other, they are not the sickest patients and finding time to listen. This study offers an innovative way of unpacking negotiation of care between chronically ill patients and registered nurses. It exposes how social and institutional discourses play a pivotal role in shaping negotiations between nurses and chronically ill patients. Negotiating care with chronically ill patients is not as asymmetric as portrayed in some of the literature and tends to be based on mutual agreements between nurses and patients. Nurses make it a point to listen to patients' needs and resist institutional discourses that preclude them from spending time with patients. © 2016 John Wiley & Sons Ltd.

  14. Divorce and Childhood Chronic Illness: A Grounded Theory of Trust, Gender, and Third-Party Care Providers.

    Science.gov (United States)

    Russell, Luke T; Coleman, Marilyn; Ganong, Lawrence H; Gayer, Debra

    2016-05-01

    Divorced parents face distinct challenges in providing care for chronically ill children. Children's residence in two households necessitates the development of family-specific strategies to ensure coparents' supervision of regimen adherence and the management of children's health care. Utilizing a risk and resilience perspective, a grounded theory study was conducted with 14 divorced parents of children with chronic illnesses. The importance of trust, gender, and relationships with third-party care providers emerged as key themes related to the development of effective coparenting relationships for maintaining children's health. Divorced parents were best able to support the management of their children's chronic conditions when care providers operated as neutral third parties and intermediaries. Collaborative family care may require health care practitioners to avoid being drawn into contentious inter-parental conflicts. © The Author(s) 2016.

  15. Nursing care gestion of chronically ill elderly people. Policlinico 2, year 2007

    Directory of Open Access Journals (Sweden)

    Liudmila Carbonell Sanamé

    2009-01-01

    Full Text Available A descriptive prospective study was made to those patients aged more than 60 years who are attended in the Policlinico 2 “Leonilda Tamayo Matos” in Isla de la Juventud during the year 2007. The study population was 1254 and 700 chronically ill elderly people were taken as representative sample, using a simple random sampling. The Mini Mental State Examination and a satisfaction survey was made to old people, all these with their informed consent. The main variables to study were: sex, age, race, civil state, educational level, work, assistance to the Grandparent’s Circle and satisfaction level. There exists a feminine predominance (61% over male, as well as the age group from 60 to 64 years old. Mixed race is the most common one (43%, followed by black (35%. 43% of these elders have secondary studies, and 64% of them are retired. The assistance to the Grandparent’s Circle is good, 338 of all the elders studied (48.2% assist to it. The results were expressed with real numbers and percentages, and were represented in bar and pie charts. There exists a predominance of arterial hypertension and diabetes mellitus in the elders studied. The quality of the nursing cares to the chronically ill old people of the policlinic 2 in 2007 was good.

  16. Transitional Care for Older Adults with Chronic Illnesses as a Vulnerable Population: Theoretical Framework and Future Directions in Nursing.

    Science.gov (United States)

    Son, Youn Jung; You, Mi Ae

    2015-12-01

    Effective transitional care is needed to improve the quality of life in older adult patients with chronic illness and avoid discontinuity of care and adverse events. The aim of this article is to provide an overview of the key features, broader implications, and the utility of Meleis' transition theory intended for the transitional care of older adults with chronic illnesses. We present the role of nurse in the context of transitional care and propose future directions to increase the quality of nursing care. The online databases Cumulative Index of Nursing and Allied Health Literature, MEDLINE, and Science Direct were searched for relevant literature published since 1970 along with textbooks regarding nursing theory. An evaluation of the usefulness of transition theory based on transitional care in older adult patients with chronic illnesses is provided. Healthy transition should be the expected standard of nursing care for older adults across all healthcare settings. Nurses need to contribute to the development of transitional care for vulnerable populations; however, transition theory needs to be enhanced through additional theoretical work and repeated evaluations of the applicability in areas of transitional care.

  17. German diabetes disease management programs are appropriate for restructuring care according to the chronic care model: an evaluation with the patient assessment of chronic illness care instrument.

    Science.gov (United States)

    Szecsenyi, Joachim; Rosemann, Thomas; Joos, Stefanie; Peters-Klimm, Frank; Miksch, Antje

    2008-06-01

    With the introduction of diabetes disease management programs (DMPs) in Germany, there is a necessity to evaluate whether patients receive care that is congruent to the Chronic Care Model (CCM) and evidence-based behavioral counseling. We examined differences as perceived and experienced by patients with type 2 diabetes between those enrolled in a DMP compared with patients receiving usual care in two federal states of Germany. A random, heterogeneous sample of 3,546 patients (59.3% female) received a mailed questionnaire from their regional health fund, including the German version of the Patient Assessment of Chonic Illness Care (PACIC) instrument, which had additional items for behavioral advice (5A). Two weeks later, a general reminder was sent out. A total of 1,532 questionnaires were returned (response rate 42.2%), and valid data could be obtained for 1,399 patients. Mean age of responders was 70.3 years, of which 53.6% were female. Overall, patients enrolled in a DMP scored significantly higher (3.21 of a possible 5) than patients not enrolled in a DMP (2.86) (P < 0.001). Significant differences in the same direction were found on all five subscales of the PACIC. For the 5A scales, similar differences were found for all five subscales plus the sum score (P < 0.001; mean for DMP = 3.08, mean for non-DMP = 2.78). DMPs, as currently established in primary care in Germany, may impact provided care significantly. The changes in daily practice that have been induced by the DMPs are recognized by patients as care that is more structured and that to a larger extent reflects the core elements of the CCM and evidence-based counseling compared with usual care.

  18. Acceptable care? Illness constructions, healthworlds, and accessible chronic treatment in South Africa.

    Science.gov (United States)

    Fried, Jana; Harris, Bronwyn; Eyles, John; Moshabela, Mosa

    2015-05-01

    Achieving equitable access to health care is an important policy goal, with access influenced by affordability, availability, and acceptability of specific services. We explore patient narratives from a 5-year program of research on health care access to examine relationships between social constructions of illness and the acceptability of health services in the context of tuberculosis treatment and antiretroviral therapy in South Africa. Acceptability of services seems particularly important to the meanings patients attach to illness and care, whereas-conversely-these constructions appear to influence what constitutes acceptability and hence affect access to care. We highlight the underestimated role of individually, socially, and politically constructed healthworlds; traditional and biomedical beliefs; and social support networks. Suggested policy implications for improving acceptability and hence overall health care access include abandoning patronizing approaches to care and refocusing from treating "disease" to responding to "illness" by acknowledging and incorporating patients' healthworlds in patient-provider interactions. © The Author(s) 2015.

  19. Pre-travel care for immunocompromised and chronically ill travellers: A retrospective study.

    Science.gov (United States)

    van Aalst, Mariëlle; Verhoeven, Roos; Omar, Freshta; Stijnis, Cornelis; van Vugt, Michèle; de Bree, Godelieve J; Goorhuis, Abraham; Grobusch, Martin P

    2017-09-01

    Immunocompromised and chronically ill travellers (ICCITs) are susceptible to travel related diseases. In ICCITs, pre-travel care regarding vaccinations and prophylactics is complex. We evaluated the protection level by preventive measures in ICCITs by analysing rates of vaccination protection, antibody titres, and the prescription of standby antibiotics. We analysed, and reported according to STROBE guidelines, pre-travel care data for ICCITs visiting the medical pre-travel clinic at the Academic Medical Centre, The Netherlands from 2011 to 2016. We analysed 2104 visits of 1826 ICCITs. Mean age was 46.6 years and mean travel duration 34.5 days. ICCITs on immunosuppressive treatment (29.7%), HIV (17.2%) or diabetes mellitus (10.2%) comprised the largest groups. Most frequently visited countries were Suriname, Indonesia, and Ghana. Most vaccination rates were >90%. Of travellers in high need of hepatitis A and B protection, 56.6 and 75.7%, underwent titre assessments, respectively. Of ICCITs with a respective indication, 50.6% received a prescription for standby antibiotics. Vaccination rates in our study population were overall comparable to those of healthy travellers studied previously in our centre. However, regarding antibody titre assessments and prescription of standby antibiotics, this study demonstrates that uniform pre-travel guidelines for ICCITs are highly needed. Copyright © 2017 Elsevier Ltd. All rights reserved.

  20. Care challenges for informal caregivers of chronically ill lung patients: results from a questionnaire survey.

    Science.gov (United States)

    Gautun, Heidi; Werner, Anne; Lurås, Hilde

    2012-02-01

    The article aims to answer who the informal caregivers of patients with chronic obstructive pulmonary disease (COPD) are, what kind of help they provide, and how they experience providing help to the patient. Data from a questionnaire survey to next of kin of COPD patients carried through in Norway in December 2009 and January 2010 is explored. About 70% of the patients have one or more informal caregivers, and a majority of the caregivers is the patient's spouse, most often a wife. The help provided is, to a large extent, practical help like housework, garden work, and shopping. Another important support is to accompany the patient to health care. About 45% of the caregivers are part of the work force. Rather few of the respondents experience the caregiving as so demanding that they have chosen to work part-time or quit working. The most demanding part of being an informal caregiver is an overall worrying for the patient. Paid sick leaves for caregivers that are employed, and hospital-at-home programmes that provide education and surveillance to the patient and his/her family through different phases of the illness, are policy means that both can help the informal caregivers to manage daily life and reduce the pressure on the formal healthcare and long-term care services in the future.

  1. Innovations in the nursing care of the chronically ill: a literature review from an international perspective.

    NARCIS (Netherlands)

    Temmink, D.; Francke, A.; Hutten, J.B.F.; Zee, J. van der; Huijer Abu-Saad, H.

    2000-01-01

    This literature review focuses on substitution-related innovations in the nursing care of chronic patients in six western industrialized countries. Differences between primary and secondary care-orientated countries in the kind of innovations implemented are discussed. Health care systems are

  2. [Empowerment and power: their relationship in the proces of caring for the chronically ill in primary care].

    Science.gov (United States)

    Riba Bellera, Lydia; Boixadera Vendrell, Mireia; Buendía Surroca, Carmen; Martorell Poveda, Maria Antònia; Piñeiro Méndez, Pilar; Zamora Sánchez, Juan José

    2014-06-01

    The concepts of "power" and "empowerment" are used in various disciplines, both political and social. Now are these terms frequently in the field of health. Our goal is to know its meaning as a synonym of expressions: "energy", "force", "domain", "vigour", "power", "capacity", "authority" and "control", which have been always within our practice nurse's own lexicon. Semantically analyzing them will help us in the understanding of its nuance. The literature review facilitates their understanding and allows us to link these words within the management of care. In this way we can propose diagnoses, interventions and outcomes specifically related to these concepts, which will help us optimize the efficiency in the management of care plans. The purpose of various collective nurses from different institutions is that the person is able to not generate dependencies and have the option of choosing your own lifestyle according to their culture and environment, independently or with the help. Generate knowledge is to generate power. The person should be educated and informed, to be expert and active and taking action to help control and minimize the progression of your health problem chronic and its possible complications. We are in the process of reformulation of the health system, whether it is private or public, and is necessary to know the power of the various actors involved in the management of the care to us. Each of these main actors--person ill, family/caregiver or nurse--has to know what is his role in this process.

  3. Affordability, availability and acceptability barriers to health care for the chronically ill: Longitudinal case studies from South Africa

    Directory of Open Access Journals (Sweden)

    Russell Steven

    2009-05-01

    Full Text Available Abstract Background There is an increasing burden of chronic illness in low and middle income countries, driven by TB/HIV, as well as non-communicable diseases. Few health systems are organized to meet the needs of chronically ill patients, and patients' perspectives on the difficulties of accessing care need to be better understood, particularly in poor resourced settings, to achieve this end. This paper describes the experience of poor households attempting to access chronic care in a rural area of South Africa. Methods A household survey (n = 1446 individuals was combined with qualitative longitudinal research that followed 30 case study households over 10 months. Illness narratives and diaries provided descriptive textual data of household interactions with the health system. Results In the survey 74% of reported health problems were 'chronic', 48% of which had no treatment action taken in the previous month. Amongst the case study households, of the 34 cases of chronic illness, only 21 (62% cases had an allopathic diagnosis and only 12 (35% were receiving regular treatment. Livelihoods exhausted from previous illness and death, low income, and limited social networks, prevented consultation with monthly expenditure for repeated consultations as high as 60% of income. Interrupted drug supplies, insufficient clinical services at the clinic level necessitating referral, and a lack of ambulances further hampered access to care. Poor provider-patient interaction led to inadequate understanding of illness, inappropriate treatment action, 'healer shopping', and at times a break down in cooperation, with the patient 'giving up' on the public health system. However, productive patient-provider interactions not only facilitated appropriate treatment action but enabled patients to justify their need for financial assistance to family and neighbours, and so access care. In addition, patients and their families with understanding of a disease became a

  4. A tool to measure whether business management capacity in general practice impacts on the quality of chronic illness care.

    Science.gov (United States)

    Holton, Christine H; Proudfoot, Judith G; Jayasinghe, Upali W; Grimm, Jane; Bubner, Tanya K; Winstanley, Julie; Harris, Mark F; Beilby, Justin J

    2010-11-01

    Our aim was to develop a tool to identify specific features of the business and financial management of practices that facilitate better quality care for chronic illness in primary care. Domains of management were identified, resulting in the development of a structured interview tool that was administered in 97 primary care practices in Australia. Interview items were screened and subjected to factor analysis, subscales identified and the overall model fit determined. The instrument's validity was assessed against another measure of quality of care. Analysis provided a four-factor solution containing 21 items, which explained 42.5% of the variance in the total scores. The factors related to administrative processes, human resources, marketing analysis and business development. All scores increased significantly with practice size. The business development subscale and total score were higher for rural practices. There was a significant correlation between the business development subscale and quality of care. The indicators of business and financial management in the final tool appear to be useful predictors of the quality of care. The instrument may help inform policy regarding the structure of general practice and implementation of a systems approach to chronic illness care. It can provide information to practices about areas for further development.

  5. Adherence to a Telephone-Supported Depression Self-Care Intervention for Adults With Chronic Physical Illnesses

    Directory of Open Access Journals (Sweden)

    Russell Simco

    2015-02-01

    Full Text Available We assessed adherence to and predictors of two components of a telephone-supported self-care intervention for depression among primary care adults aged 40 and above with chronic physical illnesses and comorbid depressive symptoms. Participants received a “toolkit” containing six self-care tools. Trained lay self-care “coaches” negotiated a contact schedule of up to weekly contacts. Study outcomes were levels of completion of the self-care tool and the coach contacts at the 2-month follow-up. Coaches reported the number of completed contacts. In all, 57 of 63 participants completed the 2-month follow-up. Of these, 67% completed at least 1 tool; the mean number of coach contacts was 5.7 (SD = 2.4 of a possible 9 contacts (63% adherence. Higher disease comorbidity and lower initial depression severity independently predicted better tool adherence. Findings suggest that people with chronic physical illnesses can achieve acceptable levels of adherence to a depression self-care intervention similar to those reported for other populations.

  6. Resident Dyads Providing Transition Care to Adolescents and Young Adults With Chronic Illnesses and Neurodevelopmental Disabilities.

    Science.gov (United States)

    Chung, Richard J; Jasien, Joan; Maslow, Gary R

    2017-04-01

    Youth with special health care needs often experience difficulty transitioning from pediatric to adult care. These difficulties may derive in part from lack of physician training in transition care and the challenges health care providers experience establishing interdisciplinary partnerships to support these patients. This educational innovation sought to improve pediatrics and adult medicine residents' interdisciplinary communication and collaboration. Residents from pediatrics, medicine-pediatrics, and internal medicine training programs participated in a transitions clinic for patients with chronic health conditions aged 16 to 26 years. Residents attended 1 to 4 half-day clinic sessions during 1-month ambulatory rotations. Pediatrics/adult medicine resident dyads collaboratively performed psychosocial and medical transition consultations that addressed health care navigation, self-care, and education and vocation topics. Two to 3 attending physicians supervised each clinic session (4 hours) while concurrently seeing patients. Residents completed a preclinic survey about baseline attitudes and experiences, and a postclinic survey about their transitions clinic experiences, changes in attitudes, and transition care preparedness. A total of 46 residents (100% of those eligible) participated in the clinic and completed the preclinic survey, and 25 (54%) completed the postclinic survey. A majority of respondents to the postclinic survey reported positive experiences. Residents in both pediatrics and internal medicine programs reported improved preparedness for providing transition care to patients with chronic health conditions and communicating effectively with colleagues in other disciplines. A dyadic model of collaborative transition care training was positively received and yielded improvements in immediate self-assessed transition care preparedness.

  7. Patient activation and disparate health care outcomes in a racially diverse sample of chronically ill older adults.

    Science.gov (United States)

    Ryvicker, Miriam; Peng, Timothy R; Feldman, Penny Hollander

    2012-11-01

    The Patient Activation Measure (PAM) assesses people's ability to self-manage their health. Variations in PAM score have been linked with health behaviors, outcomes, and potential disparities. This study assessed the relative impacts of activation, socio-demographic and clinical factors on health care outcomes in a racially diverse sample of chronically ill, elderly homecare patients. Using survey and administrative data from 249 predominantly non-White patients, logistic regression was conducted to examine the effects of activation level and patient characteristics on the likelihood of subsequent hospitalization and emergency department (ED) use. Activation was not a significant predictor of hospitalization or ED use in adjusted models. Non-Whites were more likely than Whites to have a hospitalization or ED visit. Obesity was a strong predictor of both outcomes. Further research should examine potential sources of disadvantage among chronically ill homecare patients to design effective interventions to reduce health disparities in this population.

  8. The changing face of chronic illness management in primary care: a qualitative study of underlying influences and unintended outcomes.

    Science.gov (United States)

    Hunt, Linda M; Kreiner, Meta; Brody, Howard

    2012-01-01

    Recently, there has been dramatic increase in the diagnosis and pharmaceutical management of common chronic illnesses. Using qualitative data collected in primary care clinics, we assessed how these trends play out in clinical care. This qualitative study focused on management of type 2 diabetes and hypertension in 44 primary care clinics in Michigan and was based on interviews with 58 clinicians and 70 of their patients, and observations of 107 clinical consultations. We assessed clinicians' treatment strategies and discussions of factors influencing treatment decisions, and patients' understandings and experiences in managing these illnesses. Clinicians focused on helping patients achieve test results recommended by national guidelines, and most reported combining 2 or more medications per condition to reach targets. Medication selection and management was the central focus of the consultations we observed. Polypharmacy was common among patients, with more than one-half taking 5 or more medications. Patient interviews indicated that heavy reliance on pharmaceuticals presents challenges to patient well-being, including financial costs and experiences of adverse health effects. Factors promoting heavy use of pharmaceuticals include lower diagnostic and treatment thresholds, clinician-auditing and reward systems, and the prescribing cascade, whereby more medications are prescribed to control the effects of already-prescribed medications. We present a conceptual model, the inverse benefit law, to provide insight into the impact of pharmaceutical marketing efforts on the observed trends. We make recommendations about limiting the influence of the pharmaceutical industry on clinical practice, toward improving the well-being of patients with chronic illness.

  9. Working and caring for a child with chronic illness: A review of current literature.

    Science.gov (United States)

    Kish, A M; Newcombe, P A; Haslam, D M

    2018-05-01

    Advances in medical knowledge have contributed to the increase in the number of children living with some form of long-term chronic illness or condition. As a consequence of these advancements, treatments that are more accessible and easier to administer, usually within a child's home, have been developed. However, this may mean that parents take on greater treatment responsibility and require extra time and energy to meet these tasks, additional to other responsibilities. This review paper aims to summarize and critique existing literature on working parents of children with a chronic condition, by focusing on patterns of parent work, the challenges experienced, and the flow-on consequences to well-being. Employing a narrative, meta-synthesis of the current literature, this review identified 3 key themes related to working parents of children with chronic illness. The paper first identifies that although employment is less common, these parents are not necessarily nonworking. Second, these parents experience numerous challenges including balancing work and family, time constraints, stress, and feelings of "doing it all." And third, the above challenges lead to additional impacts on parental quality of life. This review summarizes what is currently known about work patterns, challenges, and consequences in parents of children with chronic conditions. Employment is clearly impacted for these parents. Although workplace challenges have been extensively researched, other challenges (eg, personal and family) and impacts on their well-being have not. This review discusses the present standing of this research. It outlines the strengths and limitations of the current literature, makes recommendations for future research, and suggests theoretical and practical implications of the further findings. © 2018 John Wiley & Sons Ltd.

  10. Looking after chronically ill dogs

    DEFF Research Database (Denmark)

    Christiansen, Stine B.; Kristensen, Annemarie Thuri; Sandøe, Peter

    2013-01-01

    thus face similar challenges when caring for their animals. This qualitative study uncovers impacts on an owner's life, when attending to the care of an aged or chronically ill dog and reflects on the differing roles of caregivers with animal and human patients. Twelve dog owners were selected for in......-depth interviews based on the dogs' diagnoses, and the choice of treatments and care expected to affect the owner's life. Interviews were recorded, transcribed, and analyzed qualitatively. The dog owners reported several changes in their lives due to their dog's condition: practicalities like extra care, changes...... in use of the home, and restrictions relating to work, social life, and finances. These were time-consuming, tough, and annoying, but could often be dealt with through planning and prioritizing. Changes in the human–dog relationship and activities caused sadness and frustration, which in turn led...

  11. "Because somebody cared about me. That's how it changed things": homeless, chronically ill patients' perspectives on case management.

    Directory of Open Access Journals (Sweden)

    Elizabeth Davis

    Full Text Available Case management programs for chronically ill, homeless people improve health and resource utilization by linking patients with case managers focused on improving management of medical and psychosocial problems. Little is known about participants' perspectives on case management interventions.This qualitative study used in-depth, one-on-one interviews to understand the impact of a case management program from the perspective of participants. A standardized interview guide with open-ended questions explored experiences with the case management program and feelings about readiness to leave the program.FOUR RECURRENT THEMES EMERGED: (1 Participants described profound social isolation prior to case management program enrollment; (2 Participants perceived that caring personal relationships with case managers were key to the program; (3 Participants valued assistance with navigating medical and social systems; and (4 Participants perceived that their health improved through both the interpersonal and the practical aspects of case management.Chronically ill, homeless people enrolled in a case management program perceived that social support from case managers resulted in improved health. Programs for this population should consider explicitly including comprehensive social support interventions. Further research on case management should explore the impact of different types of social support on outcomes for homeless chronically ill patients.

  12. [Care of the chronically ill: strategic challenge, macro-management and health policies].

    Science.gov (United States)

    Gómez-Picard, Patricia; Fuster-Culebras, Juli

    2014-01-01

    The prevalence of chronic diseases is increasing, with the patients who suffer from them having greater need for healthcare. This fact forces a redirection in the health system, currently focused on the acute diseases, to achieve an efficient care. For this reason, it is necessary to work at all levels, starting with political decisions. These decisions should be based on the technical and scientific evidence available. Health planning is essential to establish care strategies, defining the actions to ensure the coordination and continuity of care, and also the redefinition of professional roles, where primary care nurses assume more competencies, becoming key professionals in the care of the chronic patient. The new model should include the professionalization of the management of health services. Information and communication technologies will play an important role in the development of strategies, but considering them as the tools that they are, allowing for the patient to be the focus of attention, and ensuring the privacy and the confidentiality. Copyright © 2013 Elsevier España, S.L. All rights reserved.

  13. Labelling chronic illness in primary care: a good or a bad thing?

    Science.gov (United States)

    Bedson, John; McCarney, Rob; Croft, Peter

    2004-12-01

    Traditionally the management of any chronic condition starts with its diagnosis. The labelling of disease can be beneficial in terms of defining appropriate treatment such as in coronary artery disease. However, sometimes it may be detrimental such as when x-rays are used to diagnose lumbar spondylosis leading to patients inappropriately limiting their activity. Chronic knee pain in the elderly is another example where applying labels is problematical. A common diagnosis in this situation is osteoarthritis, but this label can be applied in two ways: as a radiological diagnosis, or as a clinical one. The x-ray diagnosis, however, does not equate with the clinical syndrome, and vice versa. In addition, diagnosing knee pain as osteoarthritis does not necessarily help in management, since a patient's debility is more dependent upon their clinical signs and symptoms than the presence of radiographic osteoarthritis, and by the same token its clinical counterpart. GPs are consistent in their management of knee pain, but in attempting to diagnose the pain as osteoarthritis, these plans can alter and become more dependent on the actual diagnosis than the clinical picture. As a result management may well diverge from what the current best evidence supports. Diagnosis for diagnosis sake, should therefore be discouraged, and chronic knee pain gives us one example of why this is the case. GPs would be better placed to manage this condition if it was considered more as a regional pain syndrome, perhaps defining it simply as 'chronic knee pain in older people'. This example suggests that there is a pressing need in primary care to carefully consider in chronic disease when it is appropriate to be definitive in diagnosis such that when using disease specific labels, there is definite benefit for the patient and doctor.

  14. Professional commitment to changing chronic illness care: results from disease management programmes.

    Science.gov (United States)

    Lemmens, Karin; Strating, Mathilde; Huijsman, Robbert; Nieboer, Anna

    2009-08-01

    The aim of this exploratory study was to investigate to what extent primary care professionals are able to change their systems for delivering care to chronic obstructive pulmonary disease (COPD) patients and what professional and organizational factors are associated with the degree of process implementation. Quasi-experimental design with 1 year follow-up after intervention. Three regional COPD management programmes in the Netherlands, in which general practices cooperated with regional hospitals. All participating primary care professionals (n = 52). COPD management programme. Professional commitment, organizational context and degree of process implementation. Professionals significantly changed their systems for delivering care to COPD patients, namely self-management support, decision support, delivery system design and clinical information systems. Associations were found between organizational factors, professional commitment and changes in processes of care. Group culture and professional commitment appeared to be, to a moderate degree, predictors of process implementation. COPD management was effective; all processes improved significantly. Moreover, theoretically expected associations between organizational context and professional factors with the implementation of COPD management were indeed confirmed to some extent. Group culture and professional commitment are important facilitators.

  15. Maldynia: chronic pain as illness, and the need for complementarity in pain care.

    Science.gov (United States)

    Giordano, James

    2008-10-01

    An expanding epistemology has generated enhanced understanding of the mechanistic basis and existential impact of pain as a complexity-based systems event, and compels the need to develop diagnostic and therapeutic approaches that reflect this progressive knowledge. The basic and clinical sciences, humanities and the experiential narratives of patients all contribute essential lenses through which we can examine and de-mystify the enigma of persistent pain. It is only through the combination of distinct domains of knowledge that we can both comprehend pain as a dysfunction of the dynamical, non-linear adaptability of the nervous system, and at the same time apprehend the manifestations of these changes within the networked-hierarchy of interacting systems that is the patient as person. These are concepts that are inherent to, and derived from complexity theory, and the use of a complexity-based model of pain may be important to fully reconcile the notions of disease and illness, and fit these within a more encompassing framework. Thus, the study of pain conjoins neuroscience to the burgeoning discourse of neurophilosophy, and in so doing, may allow a more thorough dialectical approach to addressing concepts of disease-illness, brain-mind, and ethical dimensions of care. 2008 S. Karger AG, Basel

  16. The Role of Team Climate in Improving the Quality of Chronic Care Delivery: A Longitudinal Study among Professionals Working with Chronically Ill Adolescents in Transitional Care Programmes

    NARCIS (Netherlands)

    J.M. Cramm (Jane); M.M.H. Strating (Mathilde); A.P. Nieboer (Anna)

    2014-01-01

    markdownabstractAbstract Objectives:This study aimed to (1) evaluate the effectiveness of implementing transition programmes inimproving the quality of chronic care delivery and(2) identify the predictive role of (changes in) teamclimate on the quality of chronic care delivery over time.

  17. Preferences and experiences of chronically ill and disabled patients regarding shared decision-making: does the type of care to be decided upon matter?

    NARCIS (Netherlands)

    Brink-Muinen, A. van den; Spreeuwenberg, P.; Rijken, M.

    2011-01-01

    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

  18. Housing and Food Insecurity, Care Access, and Health Status Among the Chronically Ill: An Analysis of the Behavioral Risk Factor Surveillance System.

    Science.gov (United States)

    Charkhchi, Paniz; Fazeli Dehkordy, Soudabeh; Carlos, Ruth C

    2018-05-01

    The proportion of the United States population with chronic illness continues to rise. Understanding the determinants of quality of care-particularly social determinants-is critical to the provision of care in this population. To estimate the prevalence of housing and food insecurity among persons with common chronic conditions and to assess the independent effects of chronic illness and sociodemographic characteristics on (1) housing and food insecurity, and (2) health care access hardship and health status. Cross-sectional study. We used data from the 11 states and one territory that completed the social context module of the 2015 Behavioral Risk Factor Surveillance System (BRFSS). We estimated the prevalence of housing and food insecurity among patients with cancer, stroke, cardiovascular disease, and chronic lung disease. Logistic regression models were used to assess the independent effects of housing and food insecurity, chronic conditions, and demographics on health care access and health status. Among the chronically ill, 36.71% (95% CI: 35.54-37.88) experienced housing insecurity and 30.60% (95% CI: 29.49-31.71) experienced food insecurity. Cardiovascular and lung disease increased the likelihood of housing (OR 1.69, 95% CI: 1.07-2.66 and OR 1.71, 95% CI: 1.12-2.60, respectively) and food insecurity (OR 1.75, 95% CI: 1.12-2.73 and OR 1.78, 95% CI: 1.20-2.63, respectively). Housing and food insecurity significantly increased the risk of health care access hardship. Being insured or having an income level above 200% of the federal poverty level significantly reduced the likelihood of access hardship, while female gender significantly increased the likelihood. Chronic illness independently affects housing and food insecurity. In turn, food and housing anxiety leads to reduced access to care, likely due to cost concerns, and correlates with poorer health. A more complete understanding of the pathways by which chronic illness influences social determinants and

  19. Chronic Illness & Mental Health

    Science.gov (United States)

    ... increased risk of cardiovascular disease, diabetes, stroke, and Alzheimer’s disease, for example. Research also suggests that people with depression are at higher risk for osteoporosis relative to others. The reasons are not yet clear. One factor with some of these illnesses is that many ...

  20. Primary care practice-based care management for chronically ill patients (PraCMan: study protocol for a cluster randomized controlled trial [ISRCTN56104508

    Directory of Open Access Journals (Sweden)

    Baldauf Annika

    2011-06-01

    Full Text Available Abstract Background Care management programmes are an effective approach to care for high risk patients with complex care needs resulting from multiple co-occurring medical and non-medical conditions. These patients are likely to be hospitalized for a potentially "avoidable" cause. Nurse-led care management programmes for high risk elderly patients showed promising results. Care management programmes based on health care assistants (HCAs targeting adult patients with a high risk of hospitalisation may be an innovative approach to deliver cost-efficient intensified care to patients most in need. Methods/Design PraCMan is a cluster randomized controlled trial with primary care practices as unit of randomisation. The study evaluates a complex primary care practice-based care management of patients at high risk for future hospitalizations. Eligible patients either suffer from type 2 diabetes mellitus, chronic obstructive pulmonary disease, chronic heart failure or any combination. Patients with a high likelihood of hospitalization within the following 12 months (based on insurance data will be included in the trial. During 12 months of intervention patients of the care management group receive comprehensive assessment of medical and non-medical needs and resources as well as regular structured monitoring of symptoms. Assessment and monitoring will be performed by trained HCAs from the participating practices. Additionally, patients will receive written information, symptom diaries, action plans and a medication plan to improve self-management capabilities. This intervention is addition to usual care. Patients from the control group receive usual care. Primary outcome is the number of all-cause hospitalizations at 12 months follow-up, assessed by insurance claims data. Secondary outcomes are health-related quality of life (SF12, EQ5D, quality of chronic illness care (PACIC, health care utilisation and costs, medication adherence (MARS, depression

  1. The Role of Social Workers in Spiritual Care to Facilitate Coping With Chronic Illness and Self-Determination in Advance Care Planning.

    Science.gov (United States)

    Francoeur, Richard B; Burke, Nancy; Wilson, Alicia M

    2016-01-01

    Spiritual values and beliefs of patients and families influence resilience during chronic illness and shape patient choices during advance care planning. The spiritual needs of Baby Boomers will be more diverse than previous generations, in connection with the questioning, experimental mind-set of this group and the fact that it includes a higher proportion of immigrant populations outside the Judeo-Christian tradition. Social workers are trained explicitly to intervene with diverse populations and are well positioned to offer spiritual support in ways that do not necessarily conform to traditional religions. To the extent of their individual expertise and competence, social workers should assess and provide spiritual care to clients, including those who either are underserved or prefer not to seek assistance from clergy or chaplains because they feel alienated from religious institutions and representatives. They should also be aware of ethical dilemmas in consulting with spiritual care professionals in developing spiritual interventions. Social work education should address clients' humanistic and existential concerns, beliefs and behaviors of the major religions, and forms of nontraditional religious and spiritual experiences; it should also provide experiential opportunities for engaging with grief and earlier advance care planning. There should be attention to different theodical perspectives of the major religions regarding the problem of good and evil, which may preoccupy even clients who no longer participate in organized religion, because these unresolved existential issues may weaken client coping with chronic conditions and may diminish clarity and self-awareness for engaging authentically and effectively in advance care planning.

  2. [Chronically ill--chronically forgotten?--communication/mobility/everyday life].

    Science.gov (United States)

    Mattern, R

    2007-04-01

    In the course of the recent years, the policy for the needs of disabled people has started a fundamental paradigm shift. Central elements of the current policy for the needs of disabled people are prevention, rehabilitation and integration. Self-determination instead of care forms the guiding principle. An indistinct definition of chronic disease makes it difficult to obtain a general idea of structures in the care and support for people with chronic diseases. The following compilation examines requirements in social legislation and questions the quality of life by means of the three exemplary aspects: communication, mobility and everyday life. Here the question remains whether the current focus on health neglects any relevant components of chronic diseases. It turns out that people with a chronic illness, although social legislation has improved, are neglected the more support they need. Care as an elementary social principle must be discussed on an interdisciplinary basis and in the context of the whole society.

  3. Integrated care: achieving better coordination of care for the chronically ill. Lessons from The Netherlands bundled-payment initiative.

    NARCIS (Netherlands)

    Dijk, C. van; Raams, J.; Schut, E.; Baan, C.; Struijs, J.; Vrijhoef, B.; Wildt, J.E. de; Bakker, D. de

    2013-01-01

    Background: In 2010, a bundled payment system for diabetes care, COPD care and vascular risk management was introduced nationwide in The Netherlands. In the bundled payment system, are for thesepatients is organised by a care group that provides general and more specialised care for the specific

  4. Sleep quality in patients with chronic illness.

    Science.gov (United States)

    Kemple, Mary; O'Toole, Sinead; O'Toole, Conor

    2016-11-01

    To explore sleep quality in patients with chronic illness in primary care. Many people suffer from chronic illness with the numbers increasing. One common issue arises from problems that people have with their quality of sleep: a largely under-researched topic. This study exploring poor quality sleep allowed patients to describe their daily struggles with poor sleep in their own lives. This allowed the development of a deeper understanding of what it means to sleep poorly and find out how participants cope with not sleeping well. A qualitative approach enabling a deep exploration of patient's experiences of sleep quality was used. Interviews were conducted with a purposive sample of nine participants from a primary care clinic. Analysis utilised an interpretative approach. Data analysed produced four recurrent themes that were grouped into two categories. First, themes that identified the recognition by participants that 'something was wrong' were abrupt beginning and impact on their life. Second, themes that identified that the participants considered there was 'nothing wrong' were I am fine and I just carry on. Data revealed that poor quality sleep can have a profound effect on quality of life. Participants lived without good quality sleep for years. They had come to accept two seemingly irreconcilable ideas that not being able to sleep is an enduring problem with a distinct starting point, and paradoxically, this is not a problem that deserves much professional attention. Important original data were generated on the impact of poor quality sleep indicating that chronically disturbed sleep can increase the disease burden on patients with chronic illness. The results of this study suggest healthcare professionals need to understand how sleep quality issues impact on patient's experience of chronic illness. Data from this study will help nurses and other health professionals to deepen their understanding of the profound impact of poor quality sleep on patients with

  5. High satisfaction and low decisional conflict with advance care planning among chronically ill patients with advanced chronic obstructive pulmonary disease or heart failure using an online decision aid: A pilot study.

    Science.gov (United States)

    Van Scoy, Lauren J; Green, Michael J; Dimmock, Anne Ef; Bascom, Rebecca; Boehmer, John P; Hensel, Jessica K; Hozella, Joshua B; Lehman, Erik B; Schubart, Jane R; Farace, Elana; Stewart, Renee R; Levi, Benjamin H

    2016-09-01

    Many patients with chronic illnesses report a desire for increased involvement in medical decision-making. This pilot study aimed to explore how patients with exacerbation-prone disease trajectories such as advanced heart failure or chronic obstructive pulmonary disease experience advance care planning using an online decision aid and to compare whether patients with different types of exacerbation-prone illnesses had varied experiences using the tool. Pre-intervention questionnaires measured advance care planning knowledge. Post-intervention questionnaires measured: (1) advance care planning knowledge; (2) satisfaction with tool; (3) decisional conflict; and (4) accuracy of the resultant advance directive. Comparisons were made between patients with heart failure and chronic obstructive pulmonary disease. Over 90% of the patients with heart failure (n = 24) or chronic obstructive pulmonary disease (n = 25) reported being "satisfied" or "highly satisfied" with the tool across all satisfaction domains; over 90% of participants rated the resultant advance directive as "very accurate." Participants reported low decisional conflict. Advance care planning knowledge scores rose by 18% (p < 0.001) post-intervention. There were no significant differences between participants with heart failure and chronic obstructive pulmonary disease. Patients with advanced heart failure and chronic obstructive pulmonary disease were highly satisfied after using an online advance care planning decision aid and had increased knowledge of advance care planning. This tool can be a useful resource for time-constrained clinicians whose patients wish to engage in advance care planning. © The Author(s) 2016.

  6. Fatigue in chronically critically ill patients following intensive care - reliability and validity of the multidimensional fatigue inventory (MFI-20

    Directory of Open Access Journals (Sweden)

    Gloria-Beatrice Wintermann

    2018-02-01

    Full Text Available Abstract Background Fatigue often occurs as long-term complication in chronically critically ill (CCI patients after prolonged intensive care treatment. The Multidimensional Fatigue Inventory (MFI-20 has been established as valid instrument to measure fatigue in a wide range of medical illnesses. Regarding the measurement of fatigue in CCI patients, the psychometric properties of the MFI-20 have not been investigated so far. Thus, the present study examines reliability and validity of the MFI-20 in CCI patients. Methods A convenience sample of n = 195 patients with Critical Illness Polyneuropathy (CIP or Myopathy (CIM were recruited via personal contact within four weeks (t1 following the transfer from acute care ICU to post-acute ICU at a large rehabilitation hospital. N = 113 (median age 61.1 yrs., 72.6% men patients were again contacted via telephone three (t2 and six (t3 months following the transfer to post-acute ICU. The MFI-20, the Euro-Quality of Life (EQ-5D-3 L and the Structured Clinical Interview for the Diagnostic and Statistical Manual of mental disorders DSM-IV (SCID-I were applied within this prospective cohort study. Results The internal consistency Cronbach’s α was adequate for the MFI-total and all but the subscale Reduced Motivation (RM (range: .50–.91. Item-to-total correlations (range: .22–.80 indicated item redundancy for the subscale RM. Confirmatory Factor analyses (CFAs revealed poor model fit for the original 5-factor model of the MFI-20 (t2/t3, Confirmatory Fit Index, CFI = .783/ .834; Tucker-Lewis Index, TLI = .751/ .809; Root Mean Square Error of Approximation, RMSEA = .112/ .103. Among the alternative models (1-, 2-, 3-factor models, the data best fit to a 3-factor solution summarizing the highly correlated factors General −/ Physical Fatigue/ Reduced Activity (GF/ PF/ RA (t2/ t3, CFI = .878/ .896, TLI = .846/ .869, RMSEA = .089/ .085, 90% Confidence Interval .073–.104

  7. Life skills programmes for chronic mental illnesses

    Science.gov (United States)

    Tungpunkom, Patraporn; Maayan, Nicola; Soares-Weiser, Karla

    2014-01-01

    Background Most people with schizophrenia have a cyclical pattern of illness characterised by remission and relapses. The illness can reduce the ability of self-care and functioning and can lead to the illness becoming disabling. Life skills programmes, emphasising the needs associated with independent functioning, are often a part of the rehabilitation process. These programmes have been developed to enhance independent living and quality of life for people with schizophrenia. Objectives To review the effects of life skills programmes compared with standard care or other comparable therapies for people with chronic mental health problems. Search methods We searched the Cochrane Schizophrenia Group Trials Register (June 2010). We supplemented this process with handsearching and scrutiny of references. We inspected references of all included studies for further trials. Selection criteria We included all relevant randomised or quasi-randomised controlled trials for life skills programmes versus other comparable therapies or standard care involving people with serious mental illnesses. Data collection and analysis We extracted data independently. For dichotomous data we calculated relative risks (RR) and their 95% confidence intervals (CI) on an intention-to-treat basis, based on a random-effects model. For continuous data, we calculated mean differences (MD), again based on a random-effects model. Main results We included seven randomised controlled trials with a total of 483 participants. These evaluated life skills programmes versus standard care, or support group. We found no significant difference in life skills performance between people given life skills training and standard care (1 RCT, n = 32, MD −1.10; 95% CI −7.82 to 5.62). Life skills training did not improve or worsen study retention (5 RCTs, n = 345, RR 1.16; 95% CI 0.40 to 3.36). We found no significant difference in PANSS positive, negative or total scores between life skills intervention and

  8. A predictive model of Health Related Quality of life of parents of chronically ill children: the importance of care-dependency of their child and their support system.

    Science.gov (United States)

    Hatzmann, Janneke; Maurice-Stam, Heleen; Heymans, Hugo S A; Grootenhuis, Martha A

    2009-07-28

    Parents of chronically ill children are at risk for a lower Health Related Quality of Life (HRQoL). Insight in the dynamics of factors influencing parental HRQoL is necessary for development of interventions. Aim of the present study was to explore the influence of demographic and disease related factors on parental HRQoL, mediated by employment, income, leisure time, holiday and emotional support in a comprehensive model. In a cross-sectional design, 543 parents of chronically ill children completed questionnaires. A conceptual model of parental HRQoL was developed. Structural equation modeling was performed to explore the relations in the conceptual model, and to test if the model fitted the data. The model fitted the data closely (CHISQ(14) = 11.37, p = 0.66; RMSEA = 0.0, 90%CI [0.00;0.034]. The effect of socio-demographic and medical data on HRQoL was mediated by days on holiday (MCS: beta = .21) and emotional support (PCS: beta = .14; MCS: beta = .28). Also, female gender (beta = -.10), age (beta = .10), being chronically ill as a parent (beta = -.34), and care dependency of the child (beta = -.14; beta = -.15) were directly related to parental HRQoL. The final model was slightly different from the conceptual model. Main factors explaining parental HRQoL seemed to be emotional support, care dependency, days on holiday and being chronically ill as a parent. Holiday and emotional support mediated the effect of demographic and disease-related factors on HRQoL. Hours of employment, leisure time and household income did not mediate between background characteristics and HRQoL, contrasting the hypotheses.

  9. A predictive model of Health Related Quality of life of parents of chronically ill children: the importance of care-dependency of their child and their support system

    Directory of Open Access Journals (Sweden)

    Heymans Hugo SA

    2009-07-01

    Full Text Available Abstract Background Parents of chronically ill children are at risk for a lower Health Related Quality of Life (HRQoL. Insight in the dynamics of factors influencing parental HRQoL is necessary for development of interventions. Aim of the present study was to explore the influence of demographic and disease related factors on parental HRQoL, mediated by employment, income, leisure time, holiday and emotional support in a comprehensive model. Methods In a cross-sectional design, 543 parents of chronically ill children completed questionnaires. A conceptual model of parental HRQoL was developed. Structural equation modeling was performed to explore the relations in the conceptual model, and to test if the model fitted the data. Results The model fitted the data closely (CHISQ(14 = 11.37, p = 0.66; RMSEA = 0.0, 90%CI [0.00;0.034]. The effect of socio-demographic and medical data on HRQoL was mediated by days on holiday (MCS: β = .21 and emotional support (PCS: β = .14; MCS: β = .28. Also, female gender (β = -.10, age (β = .10, being chronically ill as a parent (β = -.34, and care dependency of the child (β = -.14; β = -.15 were directly related to parental HRQoL. Conclusion The final model was slightly different from the conceptual model. Main factors explaining parental HRQoL seemed to be emotional support, care dependency, days on holiday and being chronically ill as a parent. Holiday and emotional support mediated the effect of demographic and disease-related factors on HRQoL. Hours of employment, leisure time and household income did not mediate between background characteristics and HRQoL, contrasting the hypotheses.

  10. The power of food: mediating social relationships in the care of chronically ill elderly people in urban Indonesia

    Directory of Open Access Journals (Sweden)

    Peter van Eeuwijk

    2008-03-01

    Full Text Available La préparation de nourriture et de boissons est considérée comme une activité vitale dans les soins pour personnes âgées souffrant d’une maladie chronique en Indonésie urbaine. Seuls de proches membres de la famille préparent et servent les repas aux patients âgés. La majorité de ceux-ci prennent part aux repas quotidiens conjointement avec la famille qui représentent pour eux des arènes d’interaction sociale et une source d’informations essentielles. Le commensalisme et le fait que les personnes âgées continuent de participer au partage rituel de nourriture dans le cadre de festivités et de cérémonies sont ainsi des éléments importants pour la construction de leur identité sociale et leur inclusion dans la société. Néanmoins, beaucoup des patients âgés inclus dans cette étude étaient atteints de maladies chroniques – telles que l’hypertonie, le diabète et le rhumatisme – et nécessitant un suivi diététique. Ainsi la maladie change la qualité de la relation entre le personnel soignant et les patients âgés et dépendants en introduisant les notions de confiance et de contrôle. Le patient doit faire confiance au traitement spécial, c’est-à-dire au régime sain qui lui est proposé par l’aide soignante. Celle-ci, de son côté, exerce un pouvoir de contrôle en surveillant l’alimentation du malade et par là, le respect des mesures préventives et thérapeutiques qui lui sont imposées.The preparation of food and drink is regarded as pivotal to care of chronically sick elderly people in urban Indonesia. Their meals are cooked solely by close household members. The majority of the elderly sick take part in the joint daily meals that serve as important arenas of social interaction and information sources. Continued commensality and participation in the sharing of food during festivities and ceremonies thus represents a vital source of social identity and social involvement for older people

  11. Predictors of posttraumatic stress and quality of life in family members of chronically critically ill patients after intensive care.

    Science.gov (United States)

    Wintermann, Gloria-Beatrice; Weidner, Kerstin; Strauß, Bernhard; Rosendahl, Jenny; Petrowski, Katja

    2016-12-01

    Prolonged mechanical ventilation for acute medical conditions increases the risk of chronic critical illness (CCI). Close family members are confronted with the life-threatening condition of the CCI patients and are prone to develop posttraumatic stress disorder affecting their health-related quality of life (HRQL). Main aim of the present study was to investigate patient- and family-related risk factors for posttraumatic stress and decreased HRQL in family members of CCI patients. In a cross-sectional design nested within a prospective longitudinal cohort study, posttraumatic stress symptoms and quality of life were assessed in family members of CCI patients (n = 83, aged between 18 and 72 years) up to 6 months after transfer from ICU at acute care hospital to post-acute rehabilitation. Patients admitted a large rehabilitation hospital for ventilator weaning. The Posttraumatic Stress Scale-10 and the Euro-Quality of life-5D-3L were applied in both patients and their family members via telephone interview. A significant proportion of CCI patients and their family members (14.5 and 15.7 %, respectively) showed clinically relevant scores of posttraumatic stress. Both CCI patients and family members reported poorer HRQL than a normative sample. Factors independently associated with posttraumatic stress in family members were the time following ICU discharge (β = .256, 95 % confidence interval .053-.470) and the patients' diagnosis of PTSD (β = .264, 95 % confidence interval .045-.453). Perceived satisfaction with the relationship turned out to be a protective factor for posttraumatic stress in family members of CCI patients (β = -.231, 95 % confidence interval -.423 to -.015). Regarding HRQL in family members, patients' acute posttraumatic stress at ICU (β = -.290, 95 % confidence interval -.360 to -.088) and their own posttraumatic stress 3 to 6 months post-transfer (β = -.622, 95 % confidence interval -.640 to -.358) turned out to be

  12. Cultural expressions of bodily awareness among chronically ill Filipino Americans.

    Science.gov (United States)

    Becker, Gay

    2003-01-01

    To describe Filipino Americans' cultural traditions surrounding bodily awareness, especially how the principle of balance informs their views, and the link to self-management of chronic illness. This qualitative study used semistructured interviews with 85 Filipino Americans between the ages of 46 and 97 years. Volunteers were recruited from numerous health care sites in 1 geographic location in the United States. Respondents had 1 or more chronic illnesses. Taped and transcribed interviews were coded and evaluated for themes. The concept of balance was central to Filipino Americans' portrayal of bodily awareness of signs and symptoms related to chronic illnesses, as well as to actions they took to manage their chronic illnesses. Efforts were made to control chronic illnesses through a variety of self-care practices. Diet posed a particular challenge because of the symbolic importance of food in Filipino culture and its use in the maintenance of social relationships. The ways in which Filipino Americans combine attention to the body, values of balance and harmony, and emphasis on social well-being result in heightened attention to bodily processes. Filipino Americans' emphasis on bodily awareness suggests that this particular cultural strength can be used to enhance chronic illness management. Awareness of the cultural traditions of Filipino Americans can facilitate patient education about how to manage chronic illnesses.

  13. Activity in the chronically critically ill.

    Science.gov (United States)

    Winkelman, Chris; Higgins, Patricia A; Chen, Yea-Jyh Kathy

    2005-01-01

    Although therapeutic activity prevents functional decline and reduces mortality, little is known about typical levels of activity among intensive care unit (ICU) patients. This report of a preliminary study describes typical therapeutic activity and compares the use of two measures of activity in a small sample of chronically critically ill adults. Type, frequency, and duration of therapeutic activity were measured simultaneously with direct observation and actigraphy. The only consistent activity documented was turning (frequency: 3 turns/8 hours; duration: mean average of 11 minutes). Analysis demonstrated acceptable agreement between the two measures of activity for both frequency and duration of therapeutic but not for type of activity. Congruence between measures for duration of activity was also supported. This study provides information for investigators and practitioners who are interested in measuring or implementing therapeutic activity in selected critically ill adults.

  14. Illness Identity in Adults with a Chronic Illness.

    Science.gov (United States)

    Oris, Leen; Luyckx, Koen; Rassart, Jessica; Goubert, Liesbet; Goossens, Eva; Apers, Silke; Arat, Seher; Vandenberghe, Joris; Westhovens, René; Moons, Philip

    2018-02-21

    The present study examines the concept of illness identity, the degree to which a chronic illness is integrated into one's identity, in adults with a chronic illness by validating a new self-report questionnaire, the Illness Identity Questionnaire (IIQ). Self-report questionnaires on illness identity, psychological, and physical functioning were assessed in two samples: adults with congenital heart disease (22-78 year old; n = 276) and with multisystem connective tissue disorders (systemic lupus erythematosus or systemic sclerosis; 17-81 year old; n = 241). The IIQ could differentiate four illness identity states (i.e., engulfment, rejection, acceptance, and enrichment) in both samples, based on exploratory and confirmatory factor analysis. All four subscales proved to be reliable. Rejection and engulfment were related to maladaptive psychological and physical functioning, whereas acceptance and enrichment were related to adaptive psychological and physical functioning. The present findings underscore the importance of the concept of illness identity. The IIQ, a self-report questionnaire, is introduced to measure four different illness identity states in adults with a chronic illness.

  15. Community health centers and primary care access and quality for chronically-ill patients - a case-comparison study of urban Guangdong Province, China.

    Science.gov (United States)

    Shi, Leiyu; Lee, De-Chih; Liang, Hailun; Zhang, Luwen; Makinen, Marty; Blanchet, Nathan; Kidane, Ruth; Lindelow, Magnus; Wang, Hong; Wu, Shaolong

    2015-11-30

    Reform of the health care system in urban areas of China has prompted concerns about the utilization of Community Health Centers (CHC). This study examined which of the dominant primary care delivery models, i.e., the public CHC model, the 'gate-keeper' CHC model, or the hospital-owned CHC models, was most effective in enhancing access to and quality of care for patients with chronic illness. The case-comparison design was used to study nine health care organizations in Guangzhou, Dongguan, and Shenzhen cities within Guangdong province, China. 560 patients aged 50 or over with hypertension or diabetes who visited either CHCs or hospitals in these three cities were surveyed by using face-to-face interviews. Bivariate analyses were performed to compare quality and value of care indicators among subjects from the three cities. Multivariate analyses were used to assess the association between type of primary care delivery and quality as well as value of chronic care after controlling for patients' demographic and health status characteristics. Patients from all three cities chose their current health care providers primarily out of concern for quality of care (both provider expertise and adequate medical equipment), patient-centered care, and insurance plan requirement. Compared with patients from Guangzhou, those from Dongguan performed significantly better on most quality and value of care indicators. Most of these indicators remained significantly better even after controlling for patients' demographic and health status characteristics. The Shenzhen model (hospital-owned and -managed CHC) was generally effective in enhancing accessibility and continuity. However, coordination suffered due to seemingly duplicating primary care outpatients at the hospital setting. Significant associations between types of health care facilities and quality of care were also observed such that patients from CHCs were more likely to be satisfied with traveling time and follow-up care by

  16. Caring for a Seriously Ill Child

    Science.gov (United States)

    ... Search English Español Caring for a Seriously Ill Child KidsHealth / For Parents / Caring for a Seriously Ill ... helping hand. Explaining Long-Term Illness to a Child Honest communication is vital to helping a child ...

  17. Cost-effectiveness of collaborative care for chronically ill patients with comorbid depressive disorder in the general hospital setting, a randomised controlled trial

    Directory of Open Access Journals (Sweden)

    Beekman Aartjan TF

    2007-02-01

    Full Text Available Abstract Background Depressive disorder is one of the most common disorders, and is highly prevalent in chronically ill patients. The presence of comorbid depression has a negative influence on quality of life, health care costs, self-care, morbidity, and mortality. Early diagnosis and well-organized treatment of depression has a positive influence on these aspects. Earlier research in the USA has reported good results with regard to the treatment of depression with a collaborative care approach and an antidepressant algorithm. In the UK 'Problem Solving Treatment' has proved to be feasible. However, in the general hospital setting this approach has not yet been evaluated. Methods/Design CC: DIM (Collaborative Care: Depression Initiative in the Medical setting is a two-armed randomised controlled trial with randomisation at patient level. The aim of the trial is to evaluate the treatment of depressive disorder in general hospitals in the Netherlands based on a collaborative care framework, including contracting, 'Problem Solving Treatment', antidepressant algorithm, and manual-guided self-help. 126 outpatients with diabetes mellitus, chronic obstructive pulmonary disease, or cardiovascular diseases will be randomised to either the intervention group or the control group. Patients will be included if they have been diagnosed with moderate to severe depression, based on the DSM-IV criteria in a two-step screening method. The intervention group will receive treatment based on the collaborative care approach; the control group will receive 'care as usual'. Baseline and follow-up measurements (after 3, 6, 9, and 12 months will be performed by means of questionnaires. The primary outcome measure is severity of depressive symptoms, as measured with the PHQ-9. The secondary outcome measure is the cost-effectiveness of these treatments according to the TiC-P, the EuroQol and the SF-36. Discussion Earlier research has indicated that depressive disorder is

  18. Stakeholders in support systems for self-care for chronic illness: the gap between expectations and reality regarding their identity, roles and relationships.

    Science.gov (United States)

    Pumar-Méndez, María J; Mujika, Agurtzane; Regaira, Elena; Vassilev, Ivaylo; Portillo, Mari Carmen; Foss, Christina; Todorova, Elka; Roukova, Poli; Ruud Knutsen, Ingrid A; Serrano, Manuel; Lionis, Christos; Wensing, Michel; Rogers, Anne

    2017-06-01

    The spread of self-care holds the promise of containing chronic illness burden. Falling within the framework of a FP7 collaborative research project, this paper reports the views of key informants from six countries regarding who the main stakeholders are at different levels in the support system for self-care for patients with chronic illness (SSSC) and how they accomplish their role and collaborate. 90 Interviews with purposefully selected key informants from Bulgaria, Greece, the Netherlands, Norway, Spain and United Kingdom were conducted. Interviews involved government and local authorities, politicians, academics, health professionals and private sector representatives. Interviewers followed an expert opinion-based guide. Analysis involved a cross-country examination with thematic analysis and framework method techniques. Key informants described the ideal SSSC as inclusive, interdependent and patient-centred. The following main stakeholders in SSSC were identified: patients, governments, health-care professionals, associations, private companies and the media. In the current SSSCs, collaboration among stakeholders within and across different levels was said to be lacking. Patients were seen as playing a passive subordinate role based on the following: their own attitudes; the paternalistic and medicalized attitudes of the health-care professionals; their misrepresentation by patient associations; and their exposure to the damaging influences of media and industries. Making SSSC patient-centred constitutes the greatest challenge for European authorities. Strategies must be revised for promoting patient participation. They should undergo changes so as to promote industry and media social responsibility and patient association advocacy capacity. © 2016 The Authors. Health Expectations Published by John Wiley & Sons Ltd.

  19. Professionals’ opinions on support for people with chronic illness in their roles as parents in mental or in general health care

    NARCIS (Netherlands)

    van der Ende, P.C.; Korevaar, E.L.; van Busschbach, J.T.; van Weeghel, J.

    2017-01-01

    Chronic illness affects a person’s wellbeing and affects the ability to perform the social roles of spouse or parent. When working with people with long-lasting mental or somatic illnesses, social workers and nurses are confronted with needs for support, especially for parents. Although programs are

  20. Professionals’ opinions on support for people with chronic illness in their roles as parents in mental or in general health care

    NARCIS (Netherlands)

    Van Der Ende, P.C.; Korevaar, L.; Van Busschbach, J.T.; Van Weeghel, J.

    Chronic illness affects a person’s wellbeing and affects the ability to perform the social roles of spouse or parent. When working with people with long-lasting mental or somatic illnesses, social workers and nurses are confronted with needs for support, especially for parents. Although programs are

  1. The Impact of Chronic Illness on Psychosocial Stages of Human Development.

    Science.gov (United States)

    Lapham, E. Virginia, Ed.; Shevlin, Kathleen M., Ed.

    This book addresses critical issues regarding the impact of chronic illness and disability on human development. It was written for health care professionals who help chronically ill and disabled persons deal with the psychological and social as well as the biological aspects of their illness or disability. An expanded version of Erik Erikson's…

  2. Chronic conditions, fluid states: chronicity and the anthropology of illness

    National Research Council Canada - National Science Library

    Manderson, Lenore; Smith-Morris, Carolyn

    2010-01-01

    .... Breaking new ground in medical anthropology by challenging the chronic/acute divide in illness and disease, the editors, along with a group of rising scholars and some of the most influential minds...

  3. Non-disclosure of chronic kidney disease in primary care and the limits of instrumental rationality in chronic illness self-management.

    Science.gov (United States)

    Daker-White, Gavin; Rogers, Anne; Kennedy, Anne; Blakeman, Thomas; Blickem, Christian; Chew-Graham, Carolyn

    2015-04-01

    Early detection of long term conditions is predicated on assumptions that lifestyle changes and medications can be used to reduce or manage the risk of condition progression. However, ambiguity remains about the nature and place of diagnostic disclosure to people in newly recognised or asymptomatic 'pre' conditions such as early stage chronic kidney disease (CKD). The disclosure of a diagnosis is relevant to instigating strategies which rely on actively engaging patients as self-managers of their own care. Whilst primary care routinely records a diagnosis of early stage CKD, little is known about how patients learn about the fact that they have CKD or how they respond to this. This study aimed to explore patients' experiences of disclosure of CKD in primary care settings. A nested qualitative study of participants recruited to a trial of an intervention for CKD patients in Greater Manchester, UK was undertaken. A purposive sample of 26 patients, with a mean age of 72 years (range 59-89, median 71), were interviewed during 2012. Interview transcripts were analysed using constant comparative techniques. Narrative accounts reflected limited or partial disclosure of CKD; often cast in vague terms as "nothing to worry about". How patients described themselves in terms of participation and their tendencies towards 'active' or 'passive' involvement in consultations emerged as important components of narratives around disclosure. The findings illuminate the ways in which diagnosis is oriented in a context where it is possible to meet the requirements for remuneration under a pay for performance system of primary care, whilst apparently not disclosing a label or a diagnosis to patients. This challenges the presumptions inherent in wider health policy objectives that are increasingly built on the notion of responsible patients and the ethos of the active support of self-management for pre-conditions. Copyright © 2015 The Authors. Published by Elsevier Ltd.. All rights

  4. Discontinuing treatment in children with chronic, critical illnesses.

    Science.gov (United States)

    Mahon, M M; Deatrick, J A; McKnight, H J; Mohr, W K

    2000-03-01

    Decisions about optimal treatment for critically ill children are qualitatively different from those related to adults. Technological advances over the past several decades have resulted in myriad treatment options that leave many children chronically, critically ill. These children are often technology dependent. With new technologies and new patient populations comes the responsibility to understand how, when, and why these technologies are applied and when technology should not be used or should be withdrawn. Much has been written about ethical decision making in the care of chronically, critically ill adults and newborns. In this article, relevant factors about the care of children older than neonates are described: standards, decision makers, age of the child, and pain management. A case study is used as a mechanism to explore these issues. Dimensions of futility, discontinuing aggressive treatment, and a consideration of benefits and burdens are integrated throughout the discussion to inform nurse practitioner practice.

  5. Benefits of Medical Home Care Reaching Beyond Chronically Ill Teens: Exploring Parent Health-Related Quality of Life.

    Science.gov (United States)

    Chavez, Laura J; Grannis, Connor; Dolce, Millie; Chisolm, Deena J

    2018-03-15

    Caring for teens with special health care needs places physical and mental health burdens on parents, which can be exacerbated by the stresses of transitions to independence. Medical homes can improve teen transitions to greater self-management and reduce health care-related time and financial burdens for families. We examined the association between parent-reported teen medical home status and caregiver health-related quality of life (HRQOL). The study sample included parents or caregivers of teens with special health care needs aged 15 to 18 recruited from a pediatric Medicaid accountable care organization who participated in a survey (response rate, 40.5%). The primary outcome was parent HRQOL scores (0-100 points) measured using the Pediatric Quality of Life Inventory Family Impact Module. Medical home status was based on parent report of teen's health care meeting medical home criteria. Linear regression models were used to estimate HRQOL scores, adjusted for demographic characteristics, health literacy, and teen functional limitation. Among 488 parents, 27% reported their teen received care consistent with a medical home. Adjusted parent HRQOL scores were significantly higher among those whose teens had a medical home (74.40; 95% confidence interval, 71.31-77.48), relative to those whose teens did not (65.78; 95% confidence interval, 63.92-67.65). Medical home subscale analyses showed HRQOL scores had significant positive associations with family-centered care and coordinated care, but not other subscales. Teen medical home status was positively associated with caregiver HRQOL, suggesting that the medical home may benefit overall caregiver well-being. In particular, receiving care that was family centered and coordinated appeared to be the most beneficial. Copyright © 2018 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.

  6. New European policy toward chronically ill employees

    NARCIS (Netherlands)

    Kopnina, H.; Haafkens, J.; Elling, L.R.

    2009-01-01

    This article provides an overview of current policies related to the chronically ill employees in the Netherlands. Different levels of policy are discussed: those formulated at the European, Dutch and organizational levels. A significantg percentage of Dutch employees suffer from longstanding

  7. Psychological and Spiritual Factors in Chronic Illness.

    Science.gov (United States)

    Leifer, Ron

    1996-01-01

    Asserts the importance of psychological and spiritual factors in the treatment of chronic illness. Discusses the inevitably of sickness, old age, and death, as well as the presence of the physician, patience, pain, and hope. Maintains that reflection on these qualities can benefit both the physician and patient. (MJP)

  8. Approaches to self-management in chronic illness.

    Science.gov (United States)

    Novak, Marta; Costantini, Lucia; Schneider, Sabrina; Beanlands, Heather

    2013-01-01

    Management of a chronic medical condition is a complex process and requires coordinated action between healthcare providers and patients. This process is further complicated by the fact that an increasing number of patients suffer from multiple chronic conditions. Self-management involves active participation of the patients in the everyday care of the symptoms of their illness(es) and medical treatments, as well as maintaining general health and prevention of progression of medical conditions. Managing the psychosocial consequences of illness is also an important component of self-management. Data have demonstrated that enhancing self-management improves quality of life, coping, symptom management, disability, and reduces healthcare expenditures and service utilization. To foster self-management, potential barriers to implementation as well as facilitators and supports for this approach must be acknowledged. In this article, we review various aspects of self-management in chronic illness, focusing on chronic kidney disease. Better understanding of these concepts will facilitate patient-provider collaboration, improve patient care with increased patient and staff satisfaction, and may ultimately result in better clinical outcomes and enhanced quality of life for both the patients and their families. © 2013 Wiley Periodicals, Inc.

  9. A predictive model of Health Related Quality of life of parents of chronically ill children: the importance of care-dependency of their child and their support system

    NARCIS (Netherlands)

    Hatzmann, Janneke; Maurice-Stam, Heleen; Heymans, Hugo S. A.; Grootenhuis, Martha A.

    2009-01-01

    BACKGROUND: Parents of chronically ill children are at risk for a lower Health Related Quality of Life (HRQoL). Insight in the dynamics of factors influencing parental HRQoL is necessary for development of interventions. Aim of the present study was to explore the influence of demographic and

  10. Economic hardship associated with managing chronic illness: a qualitative inquiry

    Directory of Open Access Journals (Sweden)

    Jan Stephen

    2009-10-01

    Full Text Available Abstract Background Chronic illness and disability can have damaging, even catastrophic, socioeconomic effects on individuals and their households. We examined the experiences of people affected by chronic heart failure, complicated diabetes and chronic obstructive pulmonary disease to inform patient centred policy development. This paper provides a first level, qualitative understanding of the economic impact of chronic illness. Methods Interviews were conducted with patients aged between 45 and 85 years who had one or more of the index conditions and family carers from the Australian Capital Territory and Western Sydney, Australia (n = 66. Content analysis guided the interpretation of data. Results The affordability of medical treatments and care required to manage illness were identified as the key aspects of economic hardship, which compromised patients' capacity to proactively engage in self-management and risk reduction behaviours. Factors exacerbating hardship included ineligibility for government support, co-morbidity, health service flexibility, and health literacy. Participants who were on multiple medications, from culturally and linguistically diverse or Indigenous backgrounds, and/or not in paid employment, experienced economic hardship more harshly and their management of chronic illness was jeopardised as a consequence. Economic hardship was felt among not only those ineligible for government financial supports but also those receiving subsidies that were insufficient to meet the costs of managing long-term illness over and above necessary daily living expenses. Conclusion This research provides insights into the economic stressors associated with managing chronic illness, demonstrating that economic hardship requires households to make difficult decisions between care and basic living expenses. These decisions may cause less than optimal health outcomes and increased costs to the health system. The findings support the necessity

  11. Living with a chronic illness - reaching out to others

    Science.gov (United States)

    ... from a home health aide, or other services. References American Psychological Association. Coping with a diagnosis of chronic illness. Updated August 2013. www.apa.org/helpcenter/chronic-illness.aspx . Accessed November 3, ...

  12. Impact of childhood chronic illnesses on siblings: a literature review.

    Science.gov (United States)

    O' Brien, Irene; Duffy, Anita; Nicholl, Honor

    Childhood illness can have a significant impact on families, particularly on the ill child's siblings. There is a dearth of published literature focusing on the needs of siblings of ill children. This literature review aims to provide an overview of the current healthcare literature in relation to the impact of childhood chronic illness or disability on siblings. A literature review was undertaken by searching the databases CINAHL, PsycINFO, ProQuest and Cochrane Library for relevant articles in English using the search terms: 'siblings', 'chronic illness', 'disability', 'cancer', 'sibling relations', 'sibling adjustment', 'coping', 'family-centred care', 'sibling interventions', 'camps', 'autism', 'Down's syndrome'. Seventeen research studies in total were reviewed. This review focuses on three sibling groups related to children suffering from autism, cancer and Down's syndrome, and are discussed under the following headings: sibling adjustment; family functioning and sibling's coping resources; and intervention programmes. The literature revealed that siblings of children with Down's syndrome were well adjusted to living with their brother or sister. However, there was conflicting information on the adjustment of siblings of children with cancer and autism. An awareness of the harmful effect that living with childhood illness and disability can have on some siblings is essential to enable healthcare professionals to provide supportive interventions to protect siblings' physical and emotional wellbeing.

  13. Women's self-management of chronic illnesses in the context of caregiving: a grounded theory study.

    Science.gov (United States)

    Martinez-Marcos, Mercedes; De la Cuesta-Benjumea, Carmen

    2015-06-01

    Uncover how women self-manage their own chronic illness while taking care of a dependent relative. International policies place special emphasis in promoting interventions addressed to control, prevent and care for people with chronic health conditions. Self-management is a crucial part of this care. Caregivers are more prone to have chronic illness than non-caregivers. They are confronted with dilemmas about taking care of themselves while taking care of their dependent relative and the rest of their families. Caregivers articulate strategies to enable them to focus their energy on caring. Qualitative study using constructivist grounded theory. Thirty-nine women caregivers with a chronic illness participated in the study. Twenty-three semi-structured interviews and two focus groups were carried out between April 2010-December 2011. Data were analysed using grounded theory procedures. Self-management helps women caregivers with a chronic illness to balance the demands of their own illness and those of the dependent relative. They self-manage their illness by self-regulating the treatment, by regulating their strength and by controlling their emotions. Women caregivers integrate effectively and creatively the management of their chronic illnesses within the complexities of family care. This renders their health needs invisible and reaffirms them as capable caregivers. Identifying self-management strategies of women caregivers allow health professionals to acknowledge and reinforce effective self-care measures and to deter those that are ineffective and lessen their quality of life. © 2014 John Wiley & Sons Ltd.

  14. Rationale and study design of a patient-centered intervention to improve health status in chronic heart failure: The Collaborative Care to Alleviate Symptoms and Adjust to Illness (CASA) randomized trial.

    Science.gov (United States)

    Bekelman, David B; Allen, Larry A; Peterson, Jamie; Hattler, Brack; Havranek, Edward P; Fairclough, Diane L; McBryde, Connor F; Meek, Paula M

    2016-11-01

    While contemporary heart failure management has led to some improvements in morbidity and mortality, patients continue to report poor health status (i.e., burdensome symptoms, impaired function, and poor quality of life). The Collaborative Care to Alleviate Symptoms and Adjust to Illness (CASA) trial is a NIH-funded, three-site, randomized clinical trial that examines the effect of the CASA intervention compared to usual care on the primary outcome of patient-reported health status at 6months in patients with heart failure and poor health status. The CASA intervention involves a nurse who works with patients to treat symptoms (e.g., shortness of breath, fatigue, pain) using disease-specific and palliative approaches, and a social worker who provides psychosocial care targeting depression and adjustment to illness. The intervention uses a collaborative care team model of health care delivery and is structured and primarily phone-based to enhance reproducibility and scalability. This article describes the rationale and design of the CASA trial, including several decision points: (1) how to design a patient-centered intervention to improve health status; (2) how to structure the intervention so that it is reproducible and scalable; and (3) how to systematically identify outpatients with heart failure most likely to need and benefit from the intervention. The results should provide valuable information to providers and health systems about the use of team care to manage symptoms and provide psychosocial care in chronic illness. Published by Elsevier Inc.

  15. Using Illness Perceptions to Cluster Chronic Pain Patients

    DEFF Research Database (Denmark)

    Frostholm, Lisbeth; Hornemann, Christina; Ørnbøl, Eva

    2018-01-01

    to participation in a lay-led Chronic Pain Self-Management Program (CPSMP). METHODS: Four hundred and twenty-four participants in a randomized controlled trial on the CPSMP completed a questionnaire on their perceptions of their chronic pain condition at baseline. In addition, they completed a range of health......OBJECTIVES: The aims of our study were (1) To identify possible subgroups of chronic pain sufferers based on their illness perceptions (IPs); (2) To examine whether these subgroups differed in health status and health expenditure, and (3) To examine whether the subgroups differed in their response...... status measures at baseline and three months after end of participation in the CPSMP. Health care expenditure was obtained from Danish health registers. We performed cluster analyses to identify possible subgroups based on the participants' perceptions of their chronic pain condition. RESULTS: Cluster...

  16. Quick screening tool for patients with severe negative emotional reactions to chronic illness: psychometric study of the negative emotions due to chronic illness screening test (NECIS).

    Science.gov (United States)

    Huang, Yun-Hsin; Wu, Chih-Hsun; Chen, Hsiu-Jung; Cheng, Yih-Ru; Hung, Fu-Chien; Leung, Kai-Kuan; Lue, Bee-Horng; Chen, Ching-Yu; Chiu, Tai-Yuan; Wu, Yin-Chang

    2018-01-16

    Severe negative emotional reactions to chronic illness are maladaptive to patients and they need to be addressed in a primary care setting. The psychometric properties of a quick screening tool-the Negative Emotions due to Chronic Illness Screening Test (NECIS)-for general emotional problems among patients with chronic illness being treated in a primary care setting was investigated. Three studies including 375 of patients with chronic illness were used to assess and analyze internal consistency, test-retest reliability, criterion-related validity, a cut-off point for distinguishing maladaptive emotions and clinical application validity of NECIS. Self-report questionnaires were used. Internal consistency (Cronbach's α) ranged from 0.78 to 0.82, and the test-retest reliability was 0.71 (P analysis reference, the receiver-operating characteristic curve analysis revealed an area under the curve of 0.81 and 0.82 (ps emotions, with a sensitivity and specificity of 83.3 and 69.0%, and 68.5 and 83.0%, respectively. The clinical application validity analysis revealed that low NECIS group showed significantly better adaptation to chronic illness on the scales of subjective health, general satisfaction with life, self-efficacy of self-care for disease, illness perception and stressors in everyday life. The NECIS has satisfactory psychometric properties for use in the primary care setting. © The Author 2017. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  17. Labour participation of the chronically ill: a profile sketch.

    NARCIS (Netherlands)

    Baanders, A.N.; Rijken, P.M.; Peters, L.

    2002-01-01

    To improve our understanding of the problematic labour market position of people with a chronic disease, this paper describes the participation rates of several subgroups of the chronically ill in the Netherlands, as well as the aspects by which the working chronically ill differ from those who are

  18. Return Migration among Elderly, Chronically Ill Bosnian Refugees

    DEFF Research Database (Denmark)

    Handlos, Line Neerup; Olwig, Karen Fog; Bygbjerg, Ib Christian

    2015-01-01

    Elderly migrants constitute a considerable share of global return migration; nevertheless, literature on the health aspects of the return migration among these migrants is still scarce. This study explores the significance of return migration among elderly, chronically ill Bosnian refugees from D...... of illness, health did matter. Viewed as physical, social and mental well-being in line with WHO's definition of health, health was indeed one of the most important factors when the decision to return was made....... that physical health, in the sense of the absence of illness and easy access to necessary health-care services and medicines, was not highly prioritized when the decision was made whether or not to return. However, if health is regarded more broadly as involving more than mere physical health and the absence......Elderly migrants constitute a considerable share of global return migration; nevertheless, literature on the health aspects of the return migration among these migrants is still scarce. This study explores the significance of return migration among elderly, chronically ill Bosnian refugees from...

  19. Aspects of protein metabolism in children in acute and chronic illness

    NARCIS (Netherlands)

    Geukers, V.G.M.

    2014-01-01

    In critically ill children, a negative protein balance is associated with an increased incidence of infections, fewer ventilator-free days, and increased length of stay in the pediatric intensive care unit. Additionally, a malnourished state due to chronic illness increases the risk of respiratory

  20. [Impact of chronic illness on hospital nursing workloads].

    Science.gov (United States)

    Vallés, S; Valdavida, E; Menéndez, C; Natal, C

    To evaluate the short-term impact of chronic illness in hospital units and to establish a method that allows nursing workloads to be adapted according to the care needs of patients. A descriptive study of the evolution of workloads of nursing staff associated with the care needs of patients between 1 July 2014 and 30 June 2016, in a county hospital. The care needs of the patients were assessed daily using an adaptation of the Montesinos scheme. The estimated times of nursing care and auxiliary nursing required by the patients, based on their level of dependence for time distribution, were based on the standards and recommendations of the Ministry of Health, Social Services and Equality. During the study period, there was a change in the patient care needs, with no increase in activity, which resulted in an increase in the nursing staffing needs of 1,396 theoretical hours per year. This increase implies an increase in the workforce of 5 nurses in the second period. In the study period, the needs for direct nursing care increased by 7%, this increase is not related to the increase in activity, but to the level of dependency of the patients with chronic diseases. This increase occurred in both medical and surgical units. Copyright © 2017 SECA. Publicado por Elsevier España, S.L.U. All rights reserved.

  1. The MMPI-2 in chronic psychiatric illness.

    Science.gov (United States)

    Bosch, Peggy; Van Luijtelaar, Gilles; Van Den Noort, Maurits; Schenkwald, Julia; Kueppenbender, Nicole; Lim, Sabina; Egger, Jos; Coenen, Anton

    2014-10-01

    While previous studies on the MMPI-2 in patients with schizophrenia and depression have used mixed samples of both early stage and chronic psychiatric patients. Here, it is investigated whether chronicity itself might have a differential effect on the MMPI-2 profiles of these patients and whether demoralization 'associated with long-term illness' affects the scales of the MMPI-2. Thirty long-term patients with schizophrenia, 30 long-term patients with depression, and 30 healthy participants completed the MMPI-2. Groups were compared on Clinical Scales and on the Restructured Clinical (RC) Scales. Patients with schizophrenia differed from patients with depression on 14 MMPI-2 scales and from healthy controls on 10 scales, generally showing mean UT-scores 65, indicating impaired functioning. Demoralization was higher in patients with depression than in patients with schizophrenia and both psychiatric groups differed from the healthy control group. It is concluded that long-term patients with depression show impaired functioning and high demoralization, while long-term patients with schizophrenia surprisingly show near normal functioning and less demoralization. © 2014 Scandinavian Psychological Associations and John Wiley & Sons Ltd.

  2. Illness Uncertainty and Illness Intrusiveness as Predictors of Depressive and Anxious Symptomology in College Students with Chronic Illnesses

    Science.gov (United States)

    Mullins, Alexandria J.; Gamwell, Kaitlyn L.; Sharkey, Christina M.; Bakula, Dana M.; Tackett, Alayna P.; Suorsa, Kristina I.; Chaney, John M.; Mullins, Larry L.

    2017-01-01

    Objective: To examine predictors of psychological functioning in college students with chronic illnesses. Participants: Participants (N = 1413) included 364 students with self-reported diagnoses of asthma or allergies, 148 students with other chronic illnesses (eg, epilepsy, type 1 diabetes), and 901 healthy students. Data were collected between…

  3. Peer interaction in adolescents with a chronic illness

    NARCIS (Netherlands)

    Meijer, SA; Sinnema, G; Bijstra, JO; Mellenbergh, GJ; Wolters, WHG

    2000-01-01

    This study examined behavioural, cognitive and affective aspects of peer interaction of adolescents with a chronic illness. The aim of the study was twofold: (1) describe peer interaction of adolescents with a chronic illness in comparison with norms of healthy adolescents; (2) examine the

  4. Social functioning in children with a chronic illness

    NARCIS (Netherlands)

    Meijer, SA; Sinnema, G; Bijstra, Jan O.; Mellenbergh, GJ; Wolters, W. H. G.

    Behavioural, cognitive, and affective aspects of social functioning of 107 children with a chronic illness were studied. The aim of the study was twofold. (I) to describe peer interaction of children with a chronic illness in comparison with normative data of healthy children; (2) to examine whether

  5. Caring for a critically ill Amish newborn.

    Science.gov (United States)

    Gibson, Elizabeth A

    2008-10-01

    This article describes a neonatal nurse's personal experience in working with a critically ill newborn and his Amish family in a newborn intensive care unit in Montana. The description includes a cultural experience with an Amish family with application to Madeleine Leininger's theory of culture care diversity and universality.

  6. BURDEN AND QUALITY OF LIFE– A COMPARISON OF THOSE CARING FOR PSYCHIATRICALLY ILL AND MEDICALLY ILL

    Directory of Open Access Journals (Sweden)

    Shweta Rupendu

    2018-02-01

    Full Text Available BACKGROUND Despite epidemiological transitions, communicable diseases are widely prevalent world over, concomitantly non-communicable diseases are also on the rise. Mental and behavioural disorders account for 12% of the global burden of disease. Caregiving for both groups of patients, rests with an identified primary caregiver. Caregiving lays a great deal of burden on the caregiver, adversely affecting his quality of life. These factors influence the quality of caregiving, and thereby the long-term well-being of the patient. Differences between the two groups of caregivers has not been studied, more so in the Indian context. MATERIALS AND METHODS 60 caregivers of psychiatrically ill and 63 caregivers of the medically ill were studied. Burden of care was assessed using Elmstahl burden scale, and quality of life (QOL using WHOQOL BREF. RESULTS The socio demographic profile of both groups was similar. All subjects experienced a burden of care, with those caring for the psychiatrically ill experiencing a greater burden. QOL was poorer in the care givers of the psychiatrically ill, especially in those married, employed, and in a lower income group. The female care giver, mostly the spouse, experienced a greater burden of care and a poorer QOL. CONCLUSION Chronicity, stigma, poor insight and disabling dependence of the psychiatrically ill, are probably contributory. A higher caregiver burden and a lower QOL will influence quality of caregiving, and have an adverse effect on the course and prognosis of the illness. There is thus a need for routine assessment of the caregiver, and planned intervention for the same.

  7. The chronically mentally ill in community facilities. A study of quality of life.

    Science.gov (United States)

    Simpson, C J; Hyde, C E; Faragher, E B

    1989-01-01

    The quality of life of chronically mentally ill patients in acute wards in a district general hospital, a hostel ward and group homes was compared. Within the spectrum of care of these patients, the severity of psychopathology corresponded to their placement. Analysis, including adjustments for the influence of psychopathology, showed differences between the three types of facility. Although differences existed between all types of care, residents in group homes and the hostel ward shared more similarities in quality of life than those in the district general hospital. Problems of caring for the chronically mentally ill on acute wards are highlighted.

  8. Chronic illness in the workplace: stigma, identity threat and strain.

    Science.gov (United States)

    McGonagle, Alyssa K; Barnes-Farrell, Janet L

    2014-10-01

    Chronic illness affects a large and growing number of workers in the United States and globally. Stigmatization (devaluation) at work based on chronic illness may be stressful for individuals and therefore may lead to negative psychological consequences (i.e. strains). In order to better understand stressful experiences of stigma for workers with chronic illnesses, a model of stigma-related identity threat (perceptions that one is at risk of being treated negatively at work because of chronic illness) was tested on a sample of 203 working adults with chronic illnesses. The following variables related to workers' perceptions of chronic illness-related identity threat: workers' boundary flexibility (flexibility in managing their work and life), their meta-perceptions of devaluation (perceptions of others' devaluation of them based on illness) and their job self-efficacy (feelings of confidence related to performing their job). In turn, perceptions of identity threat related to both feelings of psychological strain and (lower levels of) perceived work ability. Surprisingly, neither stigma centrality (how fundamental illness is to one's identity) nor supervisor support related to workers' identity threat perceptions. Copyright © 2013 John Wiley & Sons, Ltd.

  9. Chronic physical conditions in older adults with mental illness and/ or substance use disorders.

    Science.gov (United States)

    Lin, Wen-Chieh; Zhang, Jianying; Leung, Gary Y; Clark, Robin E

    2011-10-01

    To examine the association between mental illness and chronic physical conditions in older adults and investigate whether co-occurring substance use disorders (SUDs) are associated with greater risk of chronic physical conditions beyond mental illness alone. A retrospective cross-sectional study. Medicare and Medicaid programs in Massachusetts. Massachusetts Medicare and Medicaid members aged 65 and older as of January 1, 2005 (N = 679,182). Diagnoses recorded on Medicare and Medicaid claims were used to identify mental illness, SUDs, and 15 selected chronic physical conditions. Community-dwelling older adults with mental illness or SUDs had higher adjusted risk for 14 of the 15 selected chronic physical conditions than those without these disorders; the only exception was eye diseases. Moreover, those with co-occurring SUDs and mental illness had the highest adjusted risk for 11 of these chronic conditions. For residents of long-term care facilities, mental illness and SUDs were only moderately associated with the risk of chronic physical conditions. Community-dwelling older adults with mental illness or SUDs, particularly when they co-occurred, had substantially greater medical comorbidity than those without these disorders. For residents of long-term care facilities, the generally uniformly high medical comorbidity may have moderated this relationship, although their high prevalence of mental illness and SUDs signified greater healthcare needs. These findings strongly suggest the imminent need for integrating general medical care, mental health services, and addiction health services for older adults with mental illness or SUDs. © 2011, Copyright the Authors Journal compilation © 2011, The American Geriatrics Society.

  10. Return Migration among Elderly, Chronically Ill Bosnian Refugees

    DEFF Research Database (Denmark)

    Handlos, Line Neerup; Olwig, Karen Fog; Bygbjerg, Ib Christian

    2015-01-01

    Elderly migrants constitute a considerable share of global return migration; nevertheless, literature on the health aspects of the return migration among these migrants is still scarce. This study explores the significance of return migration among elderly, chronically ill Bosnian refugees from...... Denmark and the role of health issues in their decision to return. It is based on semi-structured interviews with 33 elderly, chronically ill Bosnian refugees who have moved back to Bosnia and Herzegovina, and 10 elderly, chronically ill Bosnian refugees who have remained in Denmark. The interviews show...

  11. Parent Preferences for Shared Decision-making in Acute Versus Chronic Illness.

    Science.gov (United States)

    Tom, Dina M; Aquino, Christian; Arredondo, Anthony R; Foster, Byron A

    2017-10-01

    The goal of this study was to examine preferences for shared decision-making (SDM) in parents of acutely ill versus chronically ill children in the inpatient setting. Additionally, we explored the effect of parental perception of illness severity and uncertainty in illness on decision-making preference. In this cross-sectional study, we surveyed parents of children admitted to pediatric inpatient units at an academic, tertiary-care hospital. Surveys were administered in person and used validated tools to assess SDM preferences and uncertainty in illness. Descriptive statistics evaluated associations stratified by acute versus chronic illness, and multivariable analyses were performed. Of the 200 parents who participated, the majority were women (78%), Hispanic (81.5%), English speaking (73%), between 30 and 39 years old (37.5%), and had an education achievement of less than a college degree (77%). The mean age of hospitalized children was 8.1 years, and half reported a chronic illness. Most parents preferred an active (43%) or collaborative (40%) role in SDM. There was no association with SDM preference by demographics, number of previous hospitalizations, perception of illness severity, or uncertainty. However, parents of chronically ill children significantly preferred a passive role in SDM when they perceived a high level of uncertainty in illness. Most parents of hospitalized children prefer to take an active or collaborative role in SDM. However, parents of chronically ill children who perceive high levels of uncertainty surrounding their children's illness prefer a passive role, thus illustrating the complexity in decision-making among this parent population. Copyright © 2017 by the American Academy of Pediatrics.

  12. Positioning, telling, and performing a male illness: Chronic prostatitis/chronic pelvic pain syndrome.

    Science.gov (United States)

    Wood, Nicholas; Qureshi, Annum; Mughal, Fahim

    2017-11-01

    There is a paucity of illness accounts of men with chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS), despite a significant level of prevalence and burden of disease. This qualitative study thus elicited twelve accounts from men suffering with CP/CPPS. Narrative analysis was employed, focusing primarily on narrative content. Three major narrative themes were identified: (1) Medical stories: Blame and shame; (2) The Erratic nature of CP/CPPS; and (3) Ongoing struggles for coping and cures and the Search for meaning. Recommendations were made for health care providers and increasing the internal agency, support and activism of men with this debilitating condition. Statement of contribution What is already known on this subject? One qualitative account of this male illness (CP/CPPS) exists: an IPA study. Five cross-sectional themes: (1) Need for repeated confirmation - disease not life-threatening nor leading inexorably towards cancer; (2) Disturbed sleep and fatigue; (3) Concealing pain and problems - 'normalizing'; (4) Enduring pain by performing activities; and (5) Abrupt mood swings and limited sociality. What does this study add? Narrative analysis adds information as to how this illness is managed and survived over time. It challenges the findings (above) by providing an insider perspective. Novel narrative themes include meaning-making amongst others. Masculine performance and experiences are also crucial to this stigmatized illness. © 2017 The British Psychological Society.

  13. How can the practice nurse be more involved in the care of the chronically ill? The perspectives of GPs, patients and practice nurses

    Directory of Open Access Journals (Sweden)

    Heiderhoff Marc

    2006-03-01

    Full Text Available Background A well established "midlevel" of patient care, such as nurse practitioners and/or physician assistants, exits in many countries like the US, Canada, and Australia. In Germany, however there is only one kind of profession assisting the physician in practices, the practice nurse. Little is known about the present involvement of practice nurses in patients' care in Germany and about the attitudes of GPs, assistants and patients concerning an increased involvement. The aim of our study was to get qualitative information on the extent to which practice nurses are currently involved in the treatment of patients and about possibilities of increased involvement as well as on barriers of increased involvement. Methods We performed qualitative, semi-structured interviews with 20 GPs, 20 practice nurses and 20 patients in the Heidelberg area. The interviews were digitally recorded, transcribed and content-analysed with ATLAS.ti. Results Practice nurses are only marginally involved in the treatment of patients. GPs as well as patients were very sceptical about increased involvement in care. Patients were sceptical about nurses' professional background and feared a worsening of the patient doctor relationship. GPs also complained about the nurses' deficient education concerning medical knowledge. They feared a lack of time as well as a missing reimbursement for the efforts of an increased involvement. Practice nurses were mostly willing to be more involved, regarding it as an appreciation of their role. Important barriers were lack of time, overload with administrative work, and a lack of professional knowledge. Conclusion Practice nurses were only little involved in patient care. GPs were more sceptical than patients regarding an increased involvement. One possible area, accepted by all interviewed groups, was patient education as for instance dietary counselling. New treatment approaches as the chronic care model will require a team approach

  14. Voice and silence in an autoethnography about chronic illness

    African Journals Online (AJOL)

    Kate H

    a lecture by Lori Hartwell, a transplant recipient from America. When she told us of her .... surprises of Photovoice and film in a study of chronic illness. International ... Considering the violence of voicelessness: Censorship and self- censorship ...

  15. Mothers' Attributions Regarding the Behavior of Chronically Ill Children.

    Science.gov (United States)

    Walker, Lynn S.

    Parents of chronically ill children are faced with the difficult task of being vigilant and yet not overprotective of their children. The literature suggests that parents hold a positive bias toward their ill children. Attribution theory gives a framework in which to study parents' ideas about their children's behavior. A study was conducted to…

  16. Experiences of case management with chronic illnesses: a qualitative systematic review.

    Science.gov (United States)

    Joo, J Y; Liu, M F

    2018-03-01

    This qualitative systematic review aimed to identify and synthesize recent qualitative studies to improve understanding of the experiences and perceptions of case management interventions that individuals with chronic illnesses and their caregivers have. Case management has been shown to be effective at improving quality of care and lowering costs for individuals with chronic illnesses. However, no qualitative review has been synthesized with recent qualitative studies about case management experiences by individual with chronic illnesses. This qualitative systematic review uses a thematic synthesis method to review 10 qualitative studies published within the last 10 years, from 2007 to 2016, thereby identifying and discussing the understandings that individuals with chronic illnesses and their caregivers have about case management. From this synthesis, three themes were identified as facilitators of case management (access to healthcare resources, health status supports and emotional aid) and two themes were identified as barriers to it (low information about case management and time constraints). This is the first qualitative systematic review of the perceptions and experiences that individuals with chronic illnesses and their caregivers have about case management. The facilitators of case management can be employed to inform patients about the benefits of case management and to improve population health. The findings about barriers to case management can be used to reform case management for populations with chronic illnesses. These factors should be considered by nursing researchers and healthcare policymakers when implementing case management. © 2018 International Council of Nurses.

  17. Collaborative decision-making and promoting treatment adherence in pediatric chronic illness

    Directory of Open Access Journals (Sweden)

    Dennis Drotar

    2010-03-01

    Full Text Available Dennis Drotar, Peggy Crawford, Margaret BonnerCincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, USAAbstract: Collaborative or shared decision-making between health care providers and families can facilitate treatment adherence, health outcomes, and satisfaction with care in the management of pediatric chronic illness, but raises special challenges. Barriers such as authoritarian models of medical care as well as absence of time and opportunity for dialogue limit collaborative decision making and can disrupt treatment adherence. However, models of provider-family communication that emphasize communication and shared goal-setting inform an anticipatory guidance model of collaborative decision-making that can enhance treatment adherence. Salient challenges and strategies involved in implementing collaborative decision-making in pediatric chronic illness care are described. Research is needed to: 1 describe the communication and decision-making process in the management of pediatric chronic illness; and 2 evaluate the impact of interventions that enhance collaborative decision-making on provider-family communication, illness management, and treatment adherence.Keywords: collaborative decision-making, shared decision-making, treatment adherence, pediatric chronic illness

  18. Stress in adolescents with a chronically ill parent: inspiration from Rolland's Family Systems-Illness model

    NARCIS (Netherlands)

    Sieh, D.S.; Dikkers, A.L.C.; Visser-Meily, J.M.A.; Meijer, A.M.

    2012-01-01

    This article was inspired by Rolland’s Family Systems-Illness (FSI) model, aiming to predict adolescent stress as a function of parental illness type. Ninety-nine parents with a chronic medical condition, 82 partners, and 158 adolescent children (51 % girls; mean age = 15.1 years) participated in

  19. Pilot undergraduate course teaches students about chronic illness in children: an educational intervention study.

    Science.gov (United States)

    Montenegro, Roberto E; Birnie, Krista D; Fisher, Paul Graham; Dahl, Gary V; Binkley, John; Schiffman, Joshua D

    2014-01-01

    Recent data question whether medical education adequately prepares physicians to care for the growing number of children with chronic medical conditions. We describe a 10-week course designed to provide undergraduate students with the knowledge and skills required to understand and care for children with chronic or catastrophic illnesses. The course presented the illness experience from the child's perspective and thus presented information in a manner that was efficient, conducive, and memorable. The curriculum was designed like a graduate-level seminar that included workshops, lectures, readings, writing, and lively discussions. This is an educational intervention study that used survey data to assess changes in attitudes among and between participants completing this course versus students not exposed to this course. We used Somers' D test and Fisher's z-transformation to perform both pre- and post-nonparametric comparisons. Course participants were more likely to change their attitudes and agree that chronically ill children "feel comfortable talking with their peers about their condition" (P=0.003) and less likely to agree that these children "want to be treated differently," "want more sympathy," or "care less about romantic relationships" (P = 0.003, 0.002 and 0.02, respectively). Controls were more likely to continue to agree that chronically ill children "want to be treated differently" (P = 0.009) and "care less about romantic relationships" (P = 0.02), and less likely to agree that these children "talk openly" or "feel comfortable talking with their peers about their condition" (P = 0.04). This classroom-based course serves as a feasible and cost-effective model for universities and medical schools to aid in improving student attitudes toward treating chronically ill children. The course provides the unique opportunity to learn directly from those who care for and those who have lived with chronic illness.

  20. Single parents of children with chronic illness: an understudied phenomenon.

    Science.gov (United States)

    Brown, Ronald T; Wiener, Lori; Kupst, Mary Jo; Brennan, Tara; Behrman, Richard; Compas, Bruce E; David Elkin, T; Fairclough, Diane L; Friebert, Sarah; Katz, Ernest; Kazak, Anne E; Madan-Swain, Avi; Mansfield, Nancy; Mullins, Larry L; Noll, Robert; Patenaude, Andrea Farkas; Phipps, Sean; Sahler, O J; Sourkes, Barbara; Zeltzer, Lonnie

    2008-05-01

    To examine the chronic illness literature and evaluate the impact on single parenting and children and adolescents with chronic illness. We conducted literature reviews of relevant research pertaining to single-parent families on PubMed, Medline, and PsychINFO and also surveyed pertinent book chapters and all of the articles from the Journal of Pediatric Psychology since 1987 for articles, specifically examining the potential associations of single (lone) parenting versus two-parent households on children's psychosocial functioning and the impact of the child's illness on caregiver functioning. While the literature has examined and discussed the stressors associated with parenting a child with an illness, including the impact of illness on finances, family roles, and caregiver burden, few studies have examined single parents of children and adolescents with chronic illnesses and related stressors stemming from being a lone caregiver. There is a dearth of studies examining the association between lone parenting and psychosocial functioning among children and adolescents with chronic illnesses. Specific questions necessitating future investigation are summarized and recommendations are made for future research in this important area of inquiry.

  1. Giving patients responsibility or fostering mutual response-ability: family physicians' constructions of effective chronic illness management.

    Science.gov (United States)

    Thille, Patricia H; Russell, Grant M

    2010-10-01

    Current visions of family medicine and models of chronic illness management integrate evidence-based medicine with collaborative, patient-centered care, despite critiques that these constructs conflict with each other. With this potential conflict in mind, we applied a critical discursive psychology methodology to present discursive patterns articulated by 13 family physicians in Ontario, Canada, regarding care of patients living with multiple chronic illnesses. Physicians constructed competing versions of the terms "effective chronic illness management" and "patient involvement." One construction integrated individual responsibility for health with primacy of "evidence," resulting in a conceptualization consistent with paternalistic care. The second constructed effective care as involving active partnership of physician and patient, implying a need to foster the ability of both practitioners and patients to respond to complex challenges as they arose. The former pattern is inconsistent with visions of family medicine and chronic illness management, whereas the latter embodies it.

  2. Hypothalamic inflammation and food intake regulation during chronic illness

    NARCIS (Netherlands)

    Dwarkasing, J.T.; Marks, D.L.; Witkamp, R.F.; Norren, van K.

    2016-01-01

    Anorexia is a common symptom in chronic illness. It contributes to malnutrition and strongly affects survival and quality of life. A common denominator of many chronic diseases is an elevated inflammatory status, which is considered to play a pivotal role in the failure of food-intake regulating

  3. Impact of childhood chronic illnesses on siblings: a literature review.

    LENUS (Irish Health Repository)

    O' Brien, Irene

    2012-02-01

    BACKGROUND: Childhood illness can have a significant impact on families, particularly on the ill child\\'s siblings. There is a dearth of published literature focusing on the needs of siblings of ill children. AIM: This literature review aims to provide an overview of the current healthcare literature in relation to the impact of childhood chronic illness or disability on siblings. METHOD: A literature review was undertaken by searching the databases CINAHL, PsycINFO, ProQuest and Cochrane Library for relevant articles in English using the search terms: \\'siblings\\

  4. Association between nutritional status and subjective health status in chronically ill children attending special schools.

    Science.gov (United States)

    Joosten, Koen; van der Velde, Kelly; Joosten, Pieter; Rutten, Hans; Hulst, Jessie; Dulfer, Karolijn

    2016-04-01

    In hospitalized children with a chronic disease, malnutrition was associated with a lower subjective health status. In outpatient children with a chronic disease attending special schools, this association has never been studied. The aim of this study was to assess the association between nutritional status and subjective health status in chronically ill children attending special schools. Overall, 642 children, median age 9.8 years (IQR 7.7-11.5), 60 % male, 72 % Caucasian, were included in this prospective study in nine special schools for chronically ill children in the Netherlands. Overall malnutrition was assessed as: acute malnutrition (nutritional risk-screening tool STRONGkids. Subjective health status was assessed with EQ-5D. Overall, 16 % of the children had overall malnutrition: 3 % acute and 13 % chronic malnutrition. Nurses reported 'some/severe problems' on the health status dimensions mobility (15 %), self-care (17 %), usual activities (19 %), pain/discomfort (22 %), and anxiety/depression (22 %) in chronically ill children. Their mean visual analogue scale score (VAS) was 73.0 (SD 11.1). Malnutrition, medication usage, and younger age explained 38 % of the variance of the VAS score. The presence of overall malnutrition in chronically ill children attending special schools was associated with lower subjective health status, especially in younger children and in those with chronic medication usage. Therefore, it is important to develop and use profile-screening tools to identify these children.

  5. Chronic Pain Among Homeless Persons with Mental Illness.

    Science.gov (United States)

    Vogel, Marc; Frank, Anastasia; Choi, Fiona; Strehlau, Verena; Nikoo, Nooshin; Nikoo, Mohammadali; Hwang, Stephen W; Somers, Julian; Krausz, Michael R; Schütz, Christian G

    2017-12-01

    Chronic pain is an important public health issue. However, characteristics and needs of marginalized populations have received limited attention. Studies on prevalence and correlates of chronic pain among homeless persons are lacking. We assessed chronic pain among homeless persons with mental illness in the At Home/Chez Soi study. Cross-sectional data from a randomized controlled trial on homelessness and mental health. Data collected between 2009 and 2013 in three Canadian cities. One thousand two hundred eighty-seven homeless persons with mental illness. Data on chronic pain and utilization of prescribed and nonprescribed interventions was assessed using a chronic pain screening instrument. Mental illness was diagnosed with the Mini-International Neuropsychiatric Interview. Forty-three percent reported moderate to severe chronic pain, interfering with general daily activities (80%), sleep (78%), and social interactions (61%). Multivariate analysis indicated that increasing age and diagnoses of major depressive disorder, mood disorder with psychotic features, panic disorder, and post-traumatic stress disorder (PTSD) were independent predictors of chronic pain. Chronic pain was further associated with increased suicidality. Among participants reporting chronic pain, 64% had sought medical treatment and 56% treated pain with prescribed drugs, while 38% used illicit drugs for pain relief. Chronic pain is very common among homeless persons with mental illness and affects activities of daily living. Clinicians treating this population should be aware of the common connections between chronic pain, depression, panic disorder, PTSD, and substance use. While the data indicate the contribution of chronic pain to complex treatment needs, they also indicate a clear treatment gap. © 2017 American Academy of Pain Medicine. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com

  6. Providing healthcare for people with chronic illness: the views of Australian GPs.

    Science.gov (United States)

    Oldroyd, John; Proudfoot, Judith; Infante, Fernando A; Powell Davies, Gawaine; Bubner, Tanya; Holton, Chris; Beilby, Justin J; Harris, Mark F

    2003-07-07

    To explore general practitioners' views on chronic-disease care: the difficulties and rewards, the needs of patients, the impact of government incentive payments, and the changes needed to improve chronic-disease management. Qualitative study, involving semi-structured questions administered to 10 focus groups of GPs, conducted from April to October 2002. 54 GPs from both urban and rural practices in New South Wales and South Australia. Consistent themes emerged about the complex nature of chronic-disease management, the tension between patients' and GPs' goals for care, the time-consuming aspects of care (exacerbated by federal government requirements), and the conflicting pressures that prevent GPs engaging in structured multidisciplinary care (ie, team-based care involving systems for patient monitoring, recall, and care planning). Structured multidisciplinary care for people with chronic conditions can be difficult to provide. Barriers include the lack of fit between systems oriented towards acute care and the requirements of chronic-disease care, and between bureaucratic, inflexible structures and the complex, dynamic nature of GP-patient relationships. These problems are exacerbated by administrative pressures associated with federal government initiatives to improve chronic-illness management. Changes are needed in both policies and attitudes to enable GPs to move from episodic care to providing structured long-term care as part of a multidisciplinary team.

  7. Cuidado e doença crônica: visão do cuidador familiar no Nordeste brasileiro Care and Chronic Illness: Family Caregiver's Viewpoint in Northeast Brazil

    Directory of Open Access Journals (Sweden)

    Juliana Maria de Sousa Pinto

    2012-02-01

    Full Text Available O cuidado causa estresse na dinâmica cotidiana da família levando a complicações físicas, mentais e emocionais ao cuidador, perda da liberdade e/ou sobrecarga de cônjuges. Entre março e novembro de 2006, esta pesquisa antropológica examinou o cuidado familiar no contexto da Doença Pulmonar Obstrutiva Crônica (DPOC. Utilizando entrevista etnográfica, narrativa da enfermidade e observação participante objetivou-se descrever a reorganização e a convivência familiar com a evolução e a experiência com a DPOC, a percepção de cuidadores familiares sobre as dificuldades e as limitações vivenciadas junto ao doente e as estratégias de enfrentamento da enfermidade. Participaram do estudo seis cuidadores familiares de baixa renda residentes em bairros urbanos pobres da periferia de Fortaleza, Ceará, Brasil. Da Análise de Conteúdo emergiram as categorias: "dividindo sofrimentos" e "atitudes e comportamentos percebidos e vivenciados pelos cuidadores". As narrativas profundas mostraram a afetação significativa entre os enfermos e seus cuidadores familiares. Apesar da pobreza, violência estrutural, desemprego, preconceito social e baixos salários endêmicos no nordeste brasileiro, os cuidadores descobrem maneiras efetivas de lidar com a cronicidade além de criar estratégias para amenizar o sofrimento causado pela doença.The provision of care causes stress in everyday family dynamics leading to physical, mental and emotional complications in caregivers and spouses' loss of liberty and/or overwork. Between March and November 2006, this anthropological research examined family caregiving in the context of Chronic Obstructive Pulmonary Disease (COPD. By means of ethnographic interviews, illness narratives and participant observation, the scope was to describe family reorganization and coexistence with the disease and its evolution, caregiver perceptions about patient difficulties and limitations experienced and strategies employed

  8. Examining the Education Gradient in Chronic Illness

    Science.gov (United States)

    Chatterji, Pinka; Joo, Heesoo; Lahiri, Kajal

    2015-01-01

    We examine the education gradient in diabetes, hypertension, and high cholesterol. We take into account diagnosed as well as undiagnosed cases and use methods accounting for the possibility of unmeasured factors that are correlated with education and drive both the likelihood of having illness and the propensity to be diagnosed. Data come from the…

  9. Skin disorders in chronic psychiatric illness.

    NARCIS (Netherlands)

    Mookhoek, E.J.; Kerkhof, P.C.M. van de; Hovens, J.E.; Brouwers, J.R.B.J.; Loonen, A.J.M.

    2010-01-01

    BACKGROUND: Chronic psychiatric patients are prone to develop skin diseases. However, epidemiological data are scarce. OBJECTIVE: To describe the prevalence of skin complaints and dermatological disorders in residential psychiatric patients. METHODS: Ninety-one randomly chosen patients of the

  10. Skin disorders in chronic psychiatric illness

    NARCIS (Netherlands)

    Mookhoek, E. J.; van de Kerkhof, P. C. M.; Hovens, J. E. J. M.; Brouwers, J. R. B. J.; Loonen, A. J. M.

    2010-01-01

    Background Chronic psychiatric patients are prone to develop skin diseases. However, epidemiological data are scarce. Objective To describe the prevalence of skin complaints and dermatological disorders in residential psychiatric patients. Methods Ninety-one randomly chosen patients of the

  11. Florence Nightingale: her Crimean fever and chronic illness.

    Science.gov (United States)

    Dossey, Barbara M

    2010-03-01

    Florence Nightingale's Crimean fever and chronic illness have intrigued historians for more than a century and a half. The purpose of this article is threefold: (a) to discuss the facts that point to the cause of Nightingale's Crimean fever as brucellosis, (b) to show that her debilitating illness for 32 years (1855-1887) was compatible with the specific form of chronic brucellosis, and (c) to present new evidence that she was still having severe symptoms in December 1887, when it was previously felt that she had no severe symptoms after 1870.

  12. The role of disease management programs in the health behavior of chronically ill patients.

    Science.gov (United States)

    Cramm, Jane Murray; Adams, Samantha A; Walters, Bethany Hipple; Tsiachristas, Apostolos; Bal, Roland; Huijsman, Robbert; Rutten-Van Mölken, Maureen P M H; Nieboer, Anna Petra

    2014-04-01

    Investigate the effects of disease management program (DMP) implementation on physical activity, smoking, and physical quality of life among chronically ill patients. This study used a mixed-methods approach involving qualitative (35 interviews with project managers) and quantitative (survey of patients from 18 DMPs) data collection. Questionnaire response rates were 51% (2010; 2619/5108) at T0 and 47% (2011; 2191/4693) at T1. Physical activity and the percentage of smokers improved significantly over time, whereas physical quality of life declined. After adjusting for patients' physical quality of life at T0, age, educational level, marital status, and gender, physical activity at T0 (pmanagers reported that DMPs improved patient-professional interaction. The ability to set more concrete targets improved patients' health behaviors. DMPs appear to improve physical activity among chronically ill patients over time. Furthermore, (changes in) health behavior are important for the physical quality of life of chronically ill patients. Redesigning care systems and implementing DMPs based on the chronic care model may improve health behavior among chronically ill patients. Copyright © 2014 The Authors. Published by Elsevier Ireland Ltd.. All rights reserved.

  13. Online self-management interventions for chronically ill patients: cognitive impairment and technology issues.

    Science.gov (United States)

    Archer, Norm; Keshavjee, Karim; Demers, Catherine; Lee, Ryan

    2014-04-01

    As the fraction of the population with chronic diseases continues to grow, methods and/or technologies must be found to help the chronically ill to take more responsibility to self-manage their illnesses. Internet based and/or mobile support for disease self-management interventions have often proved effective, but patients with chronic illnesses may have co-occurring cognitive impairment, making it more difficult for them to cope with technologies. Many older patients are also not familiar with technologies or they may have cognitive disabilities or dementia that reduce their ability to self-manage their healthcare. On-line solutions to the needs of chronically ill patients must be investigated and acted upon with care in an integrated manner, since resources invested in these solutions will be lost if patients do not adopt and continue to use them successfully. To review the capabilities of online and mobile support for self-management of chronic illnesses, and the impacts that age and disease-related issues have on these interventions, including cognitive impairment and lack of access or familiarity with Internet or mobile technologies. This study includes a review of the co-occurrence of cognitive impairment with chronic diseases, and discusses how cognitive impairment, dyadic caregiver patient support, patient efficacy with technology, and smart home technologies can impact the effectiveness and sustainability of online support for disease self-management. Disease self-management interventions (SMIs) using online patient centered support can often enable patients to manage their own chronic illnesses. However, our findings show that cognitive impairment often co-occurs in patients with chronic disease. This, along with age-related increases in multiple chronic illnesses and lack of technology efficacy, can be obstacles to Internet and mobile support for chronic disease self-management. Patients with chronic diseases may have greater than expected difficulties

  14. La perspectiva de enfermos crónicos sobre la atención médica en Guadalajara, México. Un estudio cualitativo Perspectives of chronically ill patients concerning medical care in Guadalajara, Mexico. A qualitative study

    Directory of Open Access Journals (Sweden)

    Francisco J. Mercado Martínez

    2000-09-01

    ambivalent, and the rest as bad. These perspectives were closely linked to their disease experience and available medical options according to their material resources. These perspectives change with time, are specific to each available service and type of medical care, and are constructed in terms of all the subjects' present chronic illnesses. Those treated through the social security system evaluate the care in negative terms, with the opposite occurring with those treated in public health care centers and private facilities. Implications regarding health care reform are discussed.

  15. Online Peer-to-Peer Communities in the Daily Lives of People With Chronic Illness

    DEFF Research Database (Denmark)

    Kingod, Natasja; Cleal, Bryan; Wahlberg, Ayo

    2017-01-01

    This qualitative systematic review investigated how individuals with chronic illness experience online peer-to-peer support and how their experiences influence daily life with illness. Selected studies were appraised by quality criteria focused upon research questions and study design, participant...... selection, methods of data collection, and methods of analysis. Four themes were identified: (a) illness-associated identity work, (b) social support and connectivity, (c) experiential knowledge sharing, and (d) collective voice and mobilization. Findings indicate that online peer-to-peer communities...... everyday life with illness. This type of knowledge was perceived as extending far beyond medical care. Online communities were also used to mobilize and raise collective awareness about illness-specific concerns....

  16. Perceived conflict in the couple and chronic illness management: Preliminary analyses from the Quebec Health Survey

    Directory of Open Access Journals (Sweden)

    Hudon Catherine

    2006-10-01

    Full Text Available Abstract Background The quality of the relationship with the spouse/partner appears crucial among patients with multiple chronic conditions where illness management is complex and multifaceted. This study draws on data from the Quebec Health Survey (QHS to examine, among patients with one or more chronic conditions, the relation between marital status, the perceived conflict with the spouse/partner, and what the patients do to manage their illness as well as how they perceive their health. Methods Data from the QHS 1998 were used. The sample included 7547 coupled adults who had one or more chronic health problems lasting more than 6 months. Independent variables included marital status, perceived conflict with the spouse/partner, and the number of chronic conditions. Illness management was defined broadly as a measure of the patient's efforts at self-care and an illness status indicator, including visits to the generalist and the specialist, the use of telephone health line in the last 12 months, self-rated general health, mental health, and a measure of psychological distress. Linkages between the independent variables and illness management were assessed for males and females separately with logistic regressions, while accounting for the survey sampling design and household clustering. Results Female patients who did not live with their partner and had never been married were more likely to report a negative perception of their general health and a higher psychological distress than those who were married. Perceived conflict with the partner was linked to a negative perception of mental health and a higher psychological distress among both men and women. Compared to patients with only one chronic condition, males who reported more than one chronic condition were more likely to have consulted a generalist prior to the survey and used the telephone health line, whereas females were more likely to have consulted a specialist. Both males and

  17. Significado del cuidado de enfermería para el paciente en estado de cronicidad Meaning of nursing care for chronically ill patient

    Directory of Open Access Journals (Sweden)

    María Eugenia Mejía Lopera

    2008-12-01

    Full Text Available Las respuestas a "¿Qué significa el cuidado de enfermería para los pacientes en estados de cronicidad?", permitieron encontrar esencias procedentes de la interacción entre los pacientes y las enfermeras que los cuidaban; en esta investigación se consideró pertinente centrarse en lo común, permanente e invariante de los discursos de los participantes. El propósito fue acercar la brecha entre teoría y práctica, academia y ejercicio profesional y aportar al conocimiento de enfermería derivado de la práctica. Mediante método fenomenológico y abordaje de Colaizzi se definió del fenómeno de interés, recolección de datos sobre éste, lectura de los datos, relectura de las transcripciones, interpretaciones mediante códigos vivos y sustantivos, asociación por grupos de temas, descripciones exhaustivas de experiencias y validación. Se mantuvo el respeto por las personas en su decisión de participar. Resultados: Los participantes asignaron significados a la enfermera como un ser espiritual, que tiene vocación para la ayuda a los demás y que es el alma del hospital. El significado principal estuvo en el apoyo especialmente en aspectos de las interrelaciones humanas, lo cual les permitió sentirse confortados con la amabilidad y familiaridad en los momentos de hospitalización y bien cuidados, y mantener la expectativa de la recuperación.The answers to "¿What means the nursing for the patients in chronical states?", allowed to find essences coming from the interaction between the patients and the nurses who took care of them; in this investigation it was considered pertinent to be centered in common, permanent and invariant aspects of the participants’ speeches. The aim was to approach the breach between theory and practice, academy and professional exercise and to contribute to the nursing knowledge derived from the practice. By phenomenology method and boarding of Colaizzi it was defined of the interest phenomenon, data

  18. Illness Perceptions and Depression in Relation to Self-care ...

    African Journals Online (AJOL)

    depression and illness beliefs influence self-care behaviour. Keywords: Illness ... patients in Rwanda will provide new information on which to base further ... English, to facilitate the data collection process we used a translated version of the ...

  19. School Psychologists' Role Concerning Children with Chronic Illnesses in Schools

    Science.gov (United States)

    Barraclough, Camille; Machek, Greg

    2010-01-01

    The authors examined the role of school psychologists in working with children with chronic illnesses in the schools. A total of 300 practicing school psychologists in public schools, drawn from the National Association of School Psychologists membership directory, completed a standard mail survey. The survey solicited information on (a) graduate…

  20. Rethinking 'risk' and self-management for chronic illness.

    Science.gov (United States)

    Morden, Andrew; Jinks, Clare; Ong, Bie Nio

    2012-02-01

    Self-management for chronic illness is a current high profile UK healthcare policy. Policy and clinical recommendations relating to chronic illnesses are framed within a language of lifestyle risk management. This article argues the enactment of risk within current UK self-management policy is intimately related to neo-liberal ideology and is geared towards population governance. The approach that dominates policy perspectives to 'risk' management is critiqued for positioning people as rational subjects who calculate risk probabilities and act upon them. Furthermore this perspective fails to understand the lay person's construction and enactment of risk, their agenda and contextual needs when living with chronic illness. Of everyday relevance to lay people is the management of risk and uncertainty relating to social roles and obligations, the emotions involved when encountering the risk and uncertainty in chronic illness, and the challenges posed by social structural factors and social environments that have to be managed. Thus, clinical enactments of self-management policy would benefit from taking a more holistic view to patient need and seek to avoid solely communicating lifestyle risk factors to be self-managed.

  1. Psychiatric aspec ts of chronic physical illness in adolescence

    African Journals Online (AJOL)

    2008-05-18

    May 18, 2008 ... Survival rates for children who suffer chronic physical illnesses have increased dramatically in ... may have a profound impact on development, quality of life, treatment .... emotional, cognitive and social elements. ... trigger psychiatric disorder in a parent, which in .... attainment and employment suggest mild.

  2. Psychosocial Adaptation to Chronic Illness and Disability: A Conceptual Framework.

    Science.gov (United States)

    Livneh, Hanoch

    2001-01-01

    Reviews the fundamental components inherent in the process of psychosocial adaptation to chronic illness and disability. It is proposed that psychosocial outcomes correspond to specific or global indicators of quality of life and may be categorized according to their functional domains, content areas, technologies or methods of assessment, and…

  3. A School Reentry Program for Chronically Ill Children.

    Science.gov (United States)

    Worchel-Prevatt, Frances F.; Heffer, Robert W.; Prevatt, Bruce C.; Miner, Jennifer; Young-Saleme, Tammi; Horgan, Daniel; Lopez, Molly A.; Frankel, Lawrence; Rae, William A.

    1998-01-01

    Describes a school reintegration program aimed at overcoming the numerous psychological, physical, environmental, and family-based deterrents to school reentry for chronically ill children. The program uses a systems approach to children's mental health with an emphasis on multiple aspects of the child's environment (i.e., family, medical…

  4. Chronically ill patients' self-management abilities to maintain overall well-being: What is needed to take the next step in the primary care setting?

    NARCIS (Netherlands)

    J.M. Cramm (Jane); A.P. Nieboer (Anna)

    2015-01-01

    textabstractBackground: Although widespread problems in patient-professional interaction and insufficient support of patients' self-management abilities have been recognized, research investigating the relationships among care quality, productive interaction, and self-management abilities to

  5. Chronically ill patients' self-management abilities to maintain overall well-being: what is needed to take the next step in the primary care setting?

    NARCIS (Netherlands)

    J.M. Cramm (Jane); A.P. Nieboer (Anna)

    2015-01-01

    markdownabstractAbstract Background: Although widespread problems in patient–professional interaction and insufficient support of patients’self-management abilities have been recognized, research investigating the relationships among care quality, productiveinteraction, and self-management

  6. Chronic conditions, fluid states: chronicity and the anthropology of illness

    National Research Council Canada - National Science Library

    Manderson, Lenore; Smith-Morris, Carolyn

    2010-01-01

    ... in the field, address the concept of chronicity, an idea used to explain individual and local life-worlds, question public health discourse, and consider the relationship between health and the globalizing forces that shape it."--pub. desc.

  7. Improving Communication About Serious Illness

    Science.gov (United States)

    2017-01-07

    Critical Illness; Chronic Disease; Terminal Care; Palliative Care; Communication; Advance Care Planning; Neoplasm Metastasis; Lung Neoplasms; Pulmonary Disease, Chronic Obstructive; Heart Failure; End Stage Liver Disease; Kidney Failure, Chronic

  8. Assessment of Family Functionality Among the Elderly With Chronic Illness

    Directory of Open Access Journals (Sweden)

    Claudia Balula Chaves

    2013-12-01

    Full Text Available The family APGAR scale was developed by Smilkstein, Ashworth, and Montano (1982. The satisfaction assessment of the elderly with chronic illness regarding family is essential. This study aims to describe the socio-demographic and clinical profile of elderly people with chronic illness and correlate with perceived family support. This is a cross-sectional, analytical study of 294 elderly people (51.4% female, patients at the Health Centre in the district of Viseu - Portugal, diagnosed with chronic illness (77.9% cardiovascular; Mean age was 72.22 ± 6.13, 70.7% were married and 52% had 4 years of schooling; Data was gathered using a questionnaire and the Family APGAR (Adaptation, Partnership, Growth, Affection and Resolve. In relation to family functionality, 18.7% perceive families as highly functional, 26.9% mildly dysfunctional and 54.4% severely dysfunction. There is a statistically significant relationship between the family APGAR and the presence of chronic illness (p < 0.001. We found no statistical significance between the family APGAR and gender (p = 0.26, age (p = 0.26, marital status (p = 0.32 and educational level (p = 0.28. Economic, political and social changes in our society has an impact on the family and the support they provide which is manifested among vulnerable groups, as is the case of an elderly person with chronic illness. Thus, we propose specialised psychological support for this age group which is more vulnerable and without the needed support from within the family.

  9. Do Danes enjoy a high performing chronic care system?

    DEFF Research Database (Denmark)

    Hernández-Quevedo, Christina; Olejaz, Maria; Juul, Annegrete

    2012-01-01

    The trends in population health in Denmark are similar to those in most Western European countries. Major health issues include, among others, the high prevalence of chronic illnesses and lifestyle related risk factors such as obesity, tobacco, physical inactivity and alcohol. This has pressed...... the health system towards a model of provision of care based on the management of chronic care conditions. While the Chronic Care Model was introduced in 2005, the Danish health system does not fulfil the ten key preconditions that would characterise a high-performing chronic care system. As revealed...... in a recent report, the fragmented structure of the Danish health system poses challenges in providing effectively coordinated care to patients with chronic diseases....

  10. Patient-perceived self-management tasks and support needs of people with chronic illness: generic or disease specific?

    NARCIS (Netherlands)

    Houtum, L. van; Rijken, M.; Heijmans, M.; Groenewegen, P.

    2015-01-01

    Background: Self-management is widely accepted as an essential component of chronic care. Nevertheless, little is known about patients’ perceptions of self-management. Purpose: This study aims to explore which self-management tasks and support needs people with chronic illness perceive for

  11. Emergency and disaster preparedness for chronically ill patients: a review of recommendations

    Directory of Open Access Journals (Sweden)

    Tomio J

    2014-12-01

    Full Text Available Jun Tomio,1 Hajime Sato2 1Department of Public Health, Graduate School of Medicine, The University of Tokyo, Tokyo, Japan; 2Department of Health Policy and Technology Assessment, National Institute of Public Health, Wako, Japan Abstract: Recent disasters, especially those in developed countries, have highlighted the importance of disaster preparedness measures for chronic diseases. A number of surviving patients experienced the exacerbation of a chronic illness, such as hypertension, diabetes, cancer, and chronic respiratory diseases, due to disaster-related stress, interruption of care, or both; for some patients, these exacerbations resulted in death. Here, we review reports from recent disasters in developed countries and summarize the recommendations for disaster preparedness of chronically ill patients. A considerable number of recommendations based on the lessons learned from recent disasters have been developed, and they provide practical and essential steps to prevent treatment interruption during and after a disaster. To improve preparedness efforts, we suggest that health care providers should be aware of the following three suggestions: 1 recommendations should be evidence-based; 2 recommendations should contain consistent messages; and 3 recommendations should be feasible. Keywords: disaster, chronic illness, preparedness

  12. Attitudes toward mental illness in adults by mental illness-related factors and chronic disease status: 2007 and 2009 Behavioral Risk Factor Surveillance System.

    Science.gov (United States)

    Kobau, Rosemarie; Zack, Matthew M

    2013-11-01

    We examined how attitudes toward mental illness treatment and its course differ by serious psychological distress, mental illness treatment, chronic disease, and sociodemographic factors using representative state-based data. Using data from jurisdictions supporting the Behavioral Risk Factor Surveillance System's Mental Illness and Stigma Module (35 states, the District of Columbia, and Puerto Rico), we compared adjusted proportions of adults agreeing that "Treatment can help people with mental illness lead normal lives" (treatment effectiveness) and that "People are generally caring and sympathetic to people with mental illness" (supportive environment), by demographic characteristics, serious psychological distress, chronic disease status, and mental illness treatment. Attitudes regarding treatment effectiveness and a supportive environment for people with mental illness varied within and between groups. Most adults receiving mental illness treatment agreed that treatment is effective. Fewer adults with serious psychological distress than those without such distress agreed that treatment is effective. Fewer of those receiving treatment, those with psychological distress, and those with chronic disease perceived the environment as supportive. These data can be used to target interventions for population subgroups with less favorable attitudes and for surveillance.

  13. [Strategies of coping with chronic illness in adolescents].

    Science.gov (United States)

    Flores-Carvajal, Daniel; Urzúa M, Alfonso

    2016-01-01

    To develop a tool to evaluate coping strategies for chronic illness in adolescents. Based on a theoretical review and semi-structured interviews with adolescents, a questionnaire was prepared that was finally evaluated by judges experienced in in understanding, relevance and viability. A scale is proposed that consists of 60 items grouped into 12 coping families. The scale may be a useful clinical tool to provide key information about the experience and ways to cope with illness in adolescents. Copyright © 2015 Sociedad Chilena de Pediatría. Publicado por Elsevier España, S.L.U. All rights reserved.

  14. An evaluation of a positive youth development program for adolescents with chronic illness.

    Science.gov (United States)

    Maslow, Gary; Adams, Cathleen; Willis, Matthew; Neukirch, Jodie; Herts, Kate; Froehlich, Wendy; Calleson, Diane; Rickerby, Michelle

    2013-02-01

    Youth with chronic illness often struggle transitioning to adulthood and adult medical care. This article examines the outcomes of a group mentoring program called The Adolescent Leadership Council (TALC) that brings together high school participants and college mentors, all with chronic illness. TALC uses a positive youth development (PYD) approach, emphasizing strong relationships between youth and adults in an environment where youth can learn important life skills and take a leadership role. A pre-/postprogram participant survey was conducted for high school participants using a loneliness scale and a transition readiness survey. An alumni survey was conducted with all high school and college mentor graduates to assess educational-, vocational-, and health care-related outcomes. Program records review and the alumni survey indicated that TALC was consistent with the PYD program model. Twenty high school students participated in the pre-/postprogram outcomes evaluation, which demonstrated a decrease in loneliness from 46 to 38.5 (p < .001) and an increase in health care self-advocacy from 3.8 to 4.2 (p < .001). Thirty-four alumni participated in the alumni survey. All high school and college mentor alumni had graduated from high school and college, respectively, and all were either currently in school or working. The majority of alumni were seeing adult providers for medical care. The TALC program applies the principles of PYD to support positive educational, vocational, and health care outcomes for youth with chronic illness. Program development using the PYD perspective is an important new approach for supporting adult development of youth with chronic illness. Copyright © 2013 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.

  15. Return Migration among Elderly, Chronically Ill Bosnian Refugees: Does Health Matter?

    Science.gov (United States)

    Handlos, Line Neerup; Olwig, Karen Fog; Bygbjerg, Ib Christian; Kristiansen, Maria; Norredam, Marie Louise

    2015-10-12

    Elderly migrants constitute a considerable share of global return migration; nevertheless, literature on the health aspects of the return migration among these migrants is still scarce. This study explores the significance of return migration among elderly, chronically ill Bosnian refugees from Denmark and the role of health issues in their decision to return. It is based on semi-structured interviews with 33 elderly, chronically ill Bosnian refugees who have moved back to Bosnia and Herzegovina, and 10 elderly, chronically ill Bosnian refugees who have remained in Denmark. The interviews show that physical health, in the sense of the absence of illness and easy access to necessary health-care services and medicines, was not highly prioritized when the decision was made whether or not to return. However, if health is regarded more broadly as involving more than mere physical health and the absence of illness, health did matter. Viewed as physical, social and mental well-being in line with WHO's definition of health, health was indeed one of the most important factors when the decision to return was made.

  16. Gamifying Self-Management of Chronic Illnesses: A Mixed-Methods Study.

    Science.gov (United States)

    AlMarshedi, Alaa; Wills, Gary; Ranchhod, Ashok

    2016-09-09

    Self-management of chronic illnesses is an ongoing issue in health care research. Gamification is a concept that arose in the field of computer science and has been borrowed by many other disciplines. It is perceived by many that gamification can improve the self-management experience of people with chronic illnesses. This paper discusses the validation of a framework (called The Wheel of Sukr) that was introduced to achieve this goal. This research aims to (1) discuss a gamification framework targeting the self-management of chronic illnesses and (2) validate the framework by diabetic patients, medical professionals, and game experts. A mixed-method approach was used to validate the framework. Expert interviews (N=8) were conducted in order to validate the themes of the framework. Additionally, diabetic participants completed a questionnaire (N=42) in order to measure their attitudes toward the themes of the framework. The results provide a validation of the framework. This indicates that gamification might improve the self-management of chronic illnesses, such as diabetes. Namely, the eight themes in the Wheel of Sukr (fun, esteem, socializing, self-management, self-representation, motivation, growth, sustainability) were perceived positively by 71% (30/42) of the participants with P value gamification in the self-management of diabetes.

  17. Gamifying Self-Management of Chronic Illnesses: A Mixed-Methods Study

    Science.gov (United States)

    Wills, Gary; Ranchhod, Ashok

    2016-01-01

    Background Self-management of chronic illnesses is an ongoing issue in health care research. Gamification is a concept that arose in the field of computer science and has been borrowed by many other disciplines. It is perceived by many that gamification can improve the self-management experience of people with chronic illnesses. This paper discusses the validation of a framework (called The Wheel of Sukr) that was introduced to achieve this goal. Objective This research aims to (1) discuss a gamification framework targeting the self-management of chronic illnesses and (2) validate the framework by diabetic patients, medical professionals, and game experts. Methods A mixed-method approach was used to validate the framework. Expert interviews (N=8) were conducted in order to validate the themes of the framework. Additionally, diabetic participants completed a questionnaire (N=42) in order to measure their attitudes toward the themes of the framework. Results The results provide a validation of the framework. This indicates that gamification might improve the self-management of chronic illnesses, such as diabetes. Namely, the eight themes in the Wheel of Sukr (fun, esteem, socializing, self-management, self-representation, motivation, growth, sustainability) were perceived positively by 71% (30/42) of the participants with P value gamification in the self-management of diabetes. PMID:27612632

  18. The association of depression and anxiety with medical symptom burden in patients with chronic medical illness.

    Science.gov (United States)

    Katon, Wayne; Lin, Elizabeth H B; Kroenke, Kurt

    2007-01-01

    Primary care patients with anxiety and depression often describe multiple physical symptoms, but no systematic review has studied the effect of anxiety and depressive comorbidity in patients with chronic medical illnesses. MEDLINE databases were searched from 1966 through 2006 using the combined search terms diabetes, coronary artery disease (CAD), congestive heart failure (CHF), asthma, COPD, osteoarthritis (OA), rheumatoid arthritis (RA), with depression, anxiety and symptoms. Cross-sectional and longitudinal studies with >100 patients were included as were all randomized controlled trials that measure the impact of improving anxiety and depressive symptoms on medical symptom outcomes. Thirty-one studies involving 16,922 patients met our inclusion criteria. Patients with chronic medical illness and comorbid depression or anxiety compared to those with chronic medical illness alone reported significantly higher numbers of medical symptoms when controlling for severity of medical disorder. Across the four categories of common medical disorders examined (diabetes, pulmonary disease, heart disease, arthritis), somatic symptoms were at least as strongly associated with depression and anxiety as were objective physiologic measures. Two treatment studies also showed that improvement in depression outcome was associated with decreased somatic symptoms without improvement in physiologic measures. Accurate diagnosis of comorbid depressive and anxiety disorders in patients with chronic medical illness is essential in understanding the cause and in optimizing the management of somatic symptom burden.

  19. Reforming funding for chronic illness: Medicare-CDM.

    Science.gov (United States)

    Swerissen, Hal; Taylor, Michael J

    2008-02-01

    Chronic diseases are a major challenge for the Australian health care system in terms of both the provision of quality care and expenditure, and these challenges will only increase in the future. Various programs have been instituted under the Medicare system to provide increased funding for chronic care, but essentially these programs still follow the traditional fee-for-service model. This paper proposes a realignment and extension of current Medicare chronic disease management programs into a framework that provides general practitioners and other health professionals with the necessary "tools" for high quality care planning and ongoing management, and incorporating international models of outcome-linked funding. The integration of social support services with the Medicare system is also a necessary step in providing high quality care for patients with complex needs requiring additional support.

  20. Vouchers for chronic disease care.

    Science.gov (United States)

    Watts, Jennifer J; Segal, Leonie

    2008-08-01

    This paper explores the economic implications of vouchers for chronic disease management with respect to achieving objectives of equity and efficiency. Vouchers as a payment policy instrument for health care services have a set of properties that suggest they may address both demand-side and supply-side issues, and contribute to equity and efficiency. They provide a means whereby health care services can be targeted at selected groups, enabling consumer choice of provider, and encouraging competition in the supply of health services. This analysis suggests that, when structured appropriately, vouchers can support consumers to choose services that will meet their health care needs and encourage competition among providers. Although they may not be appropriate across the entire health care system, there are features of vouchers that make them a potentially attractive option, especially for the management of chronic disease.

  1. Support efforts for caregivers of chronically ill persons

    DEFF Research Database (Denmark)

    Glasdam, S.; Timm, Helle Ussing; Vittrup, Rikke

    2010-01-01

    An increasing number of people today live with chronic diseases that affect their quality of life and that of their families. Health professionals confirm this finding based on their clinical interventions targeting families of chronically ill patients. The aim of this study was to describe...... the interventions to have no effect, whereas effects were found in the other 22 studies in one or more areas, including burden, knowledge level, mastering skills, and satisfaction. The literature review concludes that the impact of these interventions is neither unique nor significant. The defined concepts...

  2. Patients' and partners' perspectives of chronic illness and its management.

    Science.gov (United States)

    Checton, Maria G; Greene, Kathryn; Magsamen-Conrad, Kate; Venetis, Maria K

    2012-06-01

    This study is framed in theories of illness uncertainty (Babrow, A. S., 2007, Problematic integration theory. In B. B. Whaley & W. Samter (Eds.), Explaining communication: Contemporary theories and exemplars (pp. 181-200). Mahwah, NJ: Erlbaum; Babrow & Matthias, 2009; Brashers, D. E., 2007, A theory of communication and uncertainty management. In B. B. Whaley & W. Samter (Eds.), Explaining communication: Contemporary theories and exemplars (pp. 201-218). Mahwah, NJ: Erlbaum; Hogan, T. P., & Brashers, D. E. (2009). The theory of communication and uncertainty management: Implications for the wider realm of information behavior. In T. D. Afifi & W. A. Afifi (Eds.), Uncertainty and information regulation in interpersonal contexts: Theories and applications, (pp. 45-66). New York, NY: Routledge; Mishel, M. H. (1999). Uncertainty in chronic illness. Annual Review of Nursing Research, 17, 269-294; Mishel, M. H., & Clayton, M. F., 2003, Theories of uncertainty. In M. J. Smith & P. R. Liehr (Eds.), Middle range theory for nursing (pp. 25-48). New York, NY: Springer) and health information management (Afifi, W. A., & Weiner, J. L., 2004, Toward a theory of motivated information management. Communication Theory, 14, 167-190. doi:10.1111/j.1468-2885.2004.tb00310.x; Greene, K., 2009, An integrated model of health disclosure decision-making. In T. D. Afifi & W. A. Afifi (Eds.), Uncertainty and information regulation in interpersonal contexts: Theories and applications (pp. 226-253). New York, NY: Routledge) and examines how couples experience uncertainty and interference related to one partner's chronic health condition. Specifically, a model is hypothesized in which illness uncertainty (i.e., stigma, prognosis, and symptom) and illness interference predict communication efficacy and health condition management. Participants include 308 dyads in which one partner has a chronic health condition. Data were analyzed using structural equation modeling. Results indicate that there

  3. Mind-body medicine and the treatment of chronic illnesses

    OpenAIRE

    Rudaz, M; Ledermann, T; Witt, Claudia M

    2017-01-01

    Mind-body medicine is a holistic approach that aims to increase a healthy life style of people and their resilience. Practically, mind-body medicine encompasses intervention methods such as mindfulness, physical exercise, coping with stress, or cognitive restructuring. Mind-body medicine has proven effective for a variety of chronic illnesses, especially in combination with conventional medicine. The present article introduces basic concepts of mind-body medicine including aspects of mindfuln...

  4. Systematic review of character development and childhood chronic illness.

    Science.gov (United States)

    Maslow, Gary R; Hill, Sherika N

    2016-05-08

    To review empirical evidence on character development among youth with chronic illnesses. A systematic literature review was conducted using PubMed and PSYCHINFO from inception until November 2013 to find quantitative studies that measured character strengths among youth with chronic illnesses. Inclusion criteria were limited to English language studies examining constructs of character development among adolescents or young adults aged 13-24 years with a childhood-onset chronic medical condition. A librarian at Duke University Medical Center Library assisted with the development of the mesh search term. Two researchers independently reviewed relevant titles (n = 549), then abstracts (n = 45), and finally manuscripts (n = 3). There is a lack of empirical research on character development and childhood-onset chronic medical conditions. Three studies were identified that used different measures of character based on moral themes. One study examined moral reasoning among deaf adolescents using Kohlberg's Moral Judgement Instrument; another, investigated moral values of adolescent cancer survivors with the Values In Action Classification of Strengths. A third study evaluated moral behavior among young adult survivors of burn injury utilizing the Tennessee Self-Concept, 2(nd) edition. The studies observed that youth with chronic conditions reasoned at less advanced stages and had a lower moral self-concept compared to referent populations, but that they did differ on character virtues and strengths when matched with healthy peers for age, sex, and race/ethnicity. Yet, generalizations could not be drawn regarding character development of youth with chronic medical conditions because the studies were too divergent from each other and biased from study design limitations. Future empirical studies should learn from the strengths and weaknesses of the existing literature on character development among youth with chronic medical conditions.

  5. Systematic review of character development and childhood chronic illness

    Science.gov (United States)

    Maslow, Gary R; Hill, Sherika N

    2016-01-01

    AIM: To review empirical evidence on character development among youth with chronic illnesses. METHODS: A systematic literature review was conducted using PubMed and PSYCHINFO from inception until November 2013 to find quantitative studies that measured character strengths among youth with chronic illnesses. Inclusion criteria were limited to English language studies examining constructs of character development among adolescents or young adults aged 13-24 years with a childhood-onset chronic medical condition. A librarian at Duke University Medical Center Library assisted with the development of the mesh search term. Two researchers independently reviewed relevant titles (n = 549), then abstracts (n = 45), and finally manuscripts (n = 3). RESULTS: There is a lack of empirical research on character development and childhood-onset chronic medical conditions. Three studies were identified that used different measures of character based on moral themes. One study examined moral reasoning among deaf adolescents using Kohlberg’s Moral Judgement Instrument; another, investigated moral values of adolescent cancer survivors with the Values In Action Classification of Strengths. A third study evaluated moral behavior among young adult survivors of burn injury utilizing the Tennessee Self-Concept, 2nd edition. The studies observed that youth with chronic conditions reasoned at less advanced stages and had a lower moral self-concept compared to referent populations, but that they did differ on character virtues and strengths when matched with healthy peers for age, sex, and race/ethnicity. Yet, generalizations could not be drawn regarding character development of youth with chronic medical conditions because the studies were too divergent from each other and biased from study design limitations. CONCLUSION: Future empirical studies should learn from the strengths and weaknesses of the existing literature on character development among youth with chronic medical conditions

  6. A narrative literature review regarding job retention strategies for people with chronic illnesses.

    Science.gov (United States)

    Koch, Lynn C; Rumrill, Phillip D; Conyers, Liza; Wohlford, Sarah

    2013-01-01

    Job retention is a major concern for individuals with chronic illnesses, who represent a rapidly growing vocational rehabilitation (VR) consumer population. The purpose of this article is to examine selected job retention considerations for consumers with chronic illnesses. The authors (a) describe distinguishing characteristics of chronic illnesses in terms of populations affected and psychosocial implications, (b) discuss the vocational implications of chronic illnesses, (c) provide general considerations for the provision of job retention services, and (d) examine job retention strategies aimed at improving employment outcomes for individuals with chronic illnesses.

  7. Illness progression in chronic fatigue syndrome: a shifting immune baseline.

    Science.gov (United States)

    Russell, Lindsey; Broderick, Gordon; Taylor, Renee; Fernandes, Henrique; Harvey, Jeanna; Barnes, Zachary; Smylie, AnneLiese; Collado, Fanny; Balbin, Elizabeth G; Katz, Ben Z; Klimas, Nancy G; Fletcher, Mary Ann

    2016-03-10

    Validation of biomarkers for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) across data sets has proven disappointing. As immune signature may be affected by many factors, our objective was to explore the shift in discriminatory cytokines across ME/CFS subjects separated by duration of illness. Cytokine expression collected at rest across multiple studies for female ME/CFS subjects (i) 18 years or younger, ill for 2 years or less (n = 18), (ii) 18-50 years of age, ill for 7 years (n = 22), and (iii) age 50 years or older (n = 28), ill for 11 years on average. Control subjects were matched for age and body mass index (BMI). Data describing the levels of 16 cytokines using a chemiluminescent assay was used to support the identification of separate linear classification models for each subgroup. In order to isolate the effects of duration of illness alone, cytokines that changed significantly with age in the healthy control subjects were excluded a priori. Optimal selection of cytokines in each group resulted in subsets of IL-1α, 6, 8, 15 and TNFα. Common to any 2 of 3 groups were IL-1α, 6 and 8. Setting these 3 markers as a triple screen and adjusting their contribution according to illness duration sub-groups produced ME/CFS classification accuracies of 75-88 %. The contribution of IL-1α, higher in recently ill adolescent ME/CFS subjects was progressively less important with duration. While high levels of IL-8 screened positive for ME/CFS in the recently afflicted, the opposite was true for subjects ill for more than 2 years. Similarly, while low levels of IL-6 suggested early ME/CFS, the reverse was true in subjects over 18 years of age ill for more than 2 years. These preliminary results suggest that IL-1α, 6 and 8 adjusted for illness duration may serve as robust biomarkers, independent of age, in screening for ME/CFS.

  8. Illness perception, coping and adherence to treatment among patients with chronic kidney disease.

    Science.gov (United States)

    Vélez-Vélez, Esperanza; Bosch, Ricardo J

    2016-04-01

    To analyse the predictive value of illness representations on treatment adherence and coping strategies in a group of patients on haemodialysis. Understanding the cognitive and emotional factors that influence adherence behaviour and coping strategies and determining their relationship to sociodemographic factors remain a challenge; meeting this challenge would encourage comprehensive patient care, thereby improving their quality of life Cross-sectional study with predictive means in a sample of 135 patients on haemodialysis. Data collection occurred from September 2010-January 2012 and tools included the following: sociodemographic data, Illness Perception Questionnaire-Revised, the Cuestionario de Afrontamiento del Estrés and the Morisky-Green test to study adherence to treatment. Being a woman, having a greater knowledge of the disease and having a poorer sense of personal control affected adherence to treatment on controlling for each factor. 'Identity', 'personal control' and 'adherence' were associated with a proactive coping strategy, whereas 'evolution' and 'gender' were related independently to avoidance coping strategies; those who believed that their illness had a chronic course were more likely to cope by avoiding the problem and this tendency was stronger among women. This study provides evidence supporting the role of gender, knowledge about the disease and sense of personal control in adherence to therapeutic regimens of patients in chronic haemodialysis. The identification and characterization of patients' perception of chronic illness may represent a useful framework to influence disease outcomes such as adherence. © 2015 John Wiley & Sons Ltd.

  9. Chronic physical illness, psychiatric disorder and disability in the workplace.

    Science.gov (United States)

    Dewa, C S; Lin, E

    2000-07-01

    While agreement is growing that mental illness burdens the North American economy, how it impacts productivity--particularly compared to physical illness--is unclear. Hypothesizing that lost work days are only the tip of the iceberg, we also examined the association of mental and chronic physical illness with partial work days and days requiring extra effort to function. Data from 4225 employed individuals, aged 18-54, were analyzed. These were a subset of respondents to the Ontario Health Survey's Mental Health Supplement, a 1990/91 epidemiologic survey of households across Ontario, Canada. Psychiatric disorder was assessed using the University of Michigan' modification of WHO's Composite International Diagnostic Interview (UM-CIDI). Similar to US reports, professional/managerial groups had lower rates of affective and anxiety disorders and fewer disability days compared to the rest of the workforce. However, no single occupational group was consistently at greater risk for either physical or psychiatric problems. Even after accounting for sociodemographic characteristics and work conditions, mental and physical status had clear, but different, impacts on productivity. Physical conditions alone had a fairly constant effect across all types of disability days and were the largest contributor to total work day loss. They also significantly impacted partial and extra effort days but were far less important than conditions involving a mental disorder. Respondents with mental health problems, either alone or in combination with physical illnesses, appeared more likely to go to work but to require greater effort to function. WHO projects that mental illness will become the second most important cause of global disease burden in the next century. Our findings suggest that among working individuals, it affects productivity more subtly than does physical illness. However, with an estimated eight percent of Ontario's workforce experiencing more than two months annually of

  10. Patients with heart failure and their partners with chronic illness: interdependence in multiple dimensions of time

    Directory of Open Access Journals (Sweden)

    Nimmon L

    2018-03-01

    Full Text Available Laura Nimmon,1,2 Joanna Bates,1,3 Gil Kimel,4,5 Lorelei Lingard6 On behalf of the Heart Failure/Palliative Care Teamwork Research Group 1Centre for Health Education Scholarship, 2Department of Occupational Science and Occupational Therapy, 3Department of Family Practice, Faculty of Medicine, University of British Columbia, 4Palliative Care Program, St Paul’s Hospital, 5Department of Medicine, Division of Internal Medicine, University of British Columbia, Vancouver, BC, 6Centre for Education Research and Innovation, Department of Medicine, Schulich School of Medicine and Dentistry, Western University, London, ON, Canada Background: Informal caregivers play a vital role in supporting patients with heart failure (HF. However, when both the HF patient and their long-term partner suffer from chronic illness, they may equally suffer from diminished quality of life and poor health outcomes. With the focus on this specific couple group as a dimension of the HF health care team, we explored this neglected component of supportive care. Materials and methods: From a large-scale Canadian multisite study, we analyzed the interview data of 13 HF patient–partner couples (26 participants. The sample consisted of patients with advanced HF and their long-term, live-in partners who also suffer from chronic illness. Results: The analysis highlighted the profound enmeshment of the couples. The couples’ interdependence was exemplified in the ways they synchronized their experience in shared dimensions of time and adapted their day-to-day routines to accommodate each other’s changing health status. Particularly significant was when both individuals were too ill to perform caregiving tasks, which resulted in the couples being in a highly fragile state. Conclusion: We conclude that the salience of this couple group’s oscillating health needs and their severe vulnerabilities need to be appreciated when designing and delivering HF team-based care. Keywords

  11. A qualitative content analysis of peer mentoring video calls in adolescents with chronic illness.

    Science.gov (United States)

    Ahola Kohut, Sara; Stinson, Jennifer; Forgeron, Paula; van Wyk, Margaret; Harris, Lauren; Luca, Stephanie

    2018-05-01

    This article endeavored to determine the topics of discussion during open-ended peer mentoring between adolescents and young adults living with chronic illness. This study occurred alongside a study of the iPeer2Peer Program. Fifty-two calls (7 mentor-mentee pairings) were audio recorded, transcribed verbatim, and analyzed using inductive coding with an additional 30 calls (21 mentor-mentee pairings) coded to ensure representativeness of the data. Three categories emerged: (1) illness impact (e.g., relationships, school/work, self-identity, personal stories), (2) self-management (e.g., treatment adherence, transition to adult care, coping strategies), and (3) non-illness-related adolescent issues (e.g., post-secondary goals, hobbies, social environments). Differences in discussed topics were noted between sexes and by diagnosis. Peer mentors provided informational, appraisal, and emotional support to adolescents.

  12. [Compassionate care for terminally ill term and preterm infants].

    Science.gov (United States)

    Schulze, A; Wermuth, I

    2007-04-01

    Involvement of the family in decisions to withhold or withdraw intensive care and parental involvement in care planning for terminally ill infants does not aggravate or prolong parents' grief responses, their feelings of guilt, or the incidence of pathological grief responses. Effective physical pain and symptom management is critically important. Compassionate care plans, however, need to implement a number of other and equally important components. Parents are not uniform in their perceived needs to make various kinds of contacts with their dying infant. They should be allowed to make their individual choices regarding contact with their baby during that time. The perinatal loss of a twin infant appears to evoke no less serious stress and risks to parents' compared to the loss of a singleton. The disruption of family life during a perinatal loss affects siblings of the baby, and their specific needs should be acknowledged. Post-death or post-autopsy meetings with the family should routinely be scheduled a few weeks after death, and bereavement support should actively be offered. Parents need to be informed about differences to be expected between maternal and paternal grief responses. The risk of pathological grief variants and chronic grief should be mentioned to parents because professional help is required in such occurrence.

  13. The shift to early palliative care: a typology of illness journeys and the role of nursing.

    Science.gov (United States)

    Wittenberg-Lyles, Elaine; Goldsmith, Joy; Ragan, Sandra

    2011-06-01

    For the current study, clinical observations of communication between patients, families, and clinicians during chronic, serious, or terminal illness in a cancer care trajectory were examined for patterns and trends. Five communication characteristics were concluded, which informed a typology of illness journeys experienced by patients with cancer and their families. The isolated journey characterizes an illness path in which communication about terminal prognosis and end-of-life care options are not present; communication is restricted by a curative-only approach to diagnosis as well as the structure of medical care. The rescued journey signifies a transition between curative care (hospital narrative) to noncurative care (hospice narrative), challenging patients and their families with an awareness of dying. The rescued journey allows communication about prognosis and care options, establishes productive experiences through open awareness, and affords patients and families opportunities to experience end-of-life care preferences. Finally, palliative care prior to hospice provides patients and families with an illness journey more readily characterized by open awareness and community, which facilitates a comforted journey. Nurses play a pivotal role in communicating about disease progression and plans of care. The typology presented can inform a structured communication curriculum for nurses and assist in the implementation of early palliative care.

  14. Acute and long-term survival in chronically critically ill surgical patients: a retrospective observational study.

    Science.gov (United States)

    Hartl, Wolfgang H; Wolf, Hilde; Schneider, Christian P; Küchenhoff, Helmut; Jauch, Karl-Walter

    2007-01-01

    Various cohort studies have shown that acute (short-term) mortality rates in unselected critically ill patients may have improved during the past 15 years. Whether these benefits also affect acute and long-term prognosis in chronically critically ill patients is unclear, as are determinants relevant to prognosis. We conducted a retrospective analysis of data collected from March 1993 to February 2005. A cohort of 390 consecutive surgical patients requiring intensive care therapy for more than 28 days was analyzed. The intensive care unit (ICU) survival rate was 53.6%. Survival rates at one, three and five years were 61.8%, 44.7% and 37.0% among ICU survivors. After adjustment for relevant covariates, acute and long-term survival rates did not differ significantly between 1993 to 1999 and 1999 to 2005 intervals. Acute prognosis was determined by disease severity during ICU stay and by primary diagnosis. However, only the latter was independently associated with long-term prognosis. Advanced age was an independent prognostic determinant of poor short-term and long-term survival. Acute and long-term prognosis in chronically critically ill surgical patients has remained unchanged throughout the past 12 years. After successful surgical intervention and intensive care, long-term outcome is reasonably good and is mainly determined by age and underlying disease.

  15. Patients with heart failure and their partners with chronic illness: interdependence in multiple dimensions of time.

    Science.gov (United States)

    Nimmon, Laura; Bates, Joanna; Kimel, Gil; Lingard, Lorelei

    2018-01-01

    Informal caregivers play a vital role in supporting patients with heart failure (HF). However, when both the HF patient and their long-term partner suffer from chronic illness, they may equally suffer from diminished quality of life and poor health outcomes. With the focus on this specific couple group as a dimension of the HF health care team, we explored this neglected component of supportive care. From a large-scale Canadian multisite study, we analyzed the interview data of 13 HF patient-partner couples (26 participants). The sample consisted of patients with advanced HF and their long-term, live-in partners who also suffer from chronic illness. The analysis highlighted the profound enmeshment of the couples. The couples' interdependence was exemplified in the ways they synchronized their experience in shared dimensions of time and adapted their day-to-day routines to accommodate each other's changing health status. Particularly significant was when both individuals were too ill to perform caregiving tasks, which resulted in the couples being in a highly fragile state. We conclude that the salience of this couple group's oscillating health needs and their severe vulnerabilities need to be appreciated when designing and delivering HF team-based care.

  16. Oral hygiene care in critically ill patients

    African Journals Online (AJOL)

    2007-11-19

    Nov 19, 2007 ... conditions, treatment interventions, equipment, and the patient's inability to attend to his or her ... practices for a critically ill patient include assessment of the oral cavity, brushing the teeth, moisturising the lips and mouth and ...

  17. The impact of illness-related shame on psychological health and social relationships: Testing a mediational model in students with chronic illness.

    Science.gov (United States)

    Trindade, Inês A; Duarte, Joana; Ferreira, Cláudia; Coutinho, Mariana; Pinto-Gouveia, José

    2018-01-26

    This study explores the impact of illness-related shame on the quality of social relationships and psychological health in chronic patients. We aimed to examine the roles of fear of receiving compassion from others and experiential avoidance as potential mediators of this relationship. Although some studies have demonstrated the negative impact of chronic illness-related shame on psychological functioning, the mechanisms that may underlie this link remain understudied. The sample was comprised by 115 college students, which had been diagnosed with at least 1 chronic illness. Participants completed self-report measures on an online platform. This study's design was cross-sectional. A path analysis was conducted using structural equation modelling. Results showed that the impact of illness-related shame on both psychological health (R 2  = .45) and the quality of social relationships (R 2  = .33) was fully accounted by fear of compassion from others and experiential avoidance. This model revealed an excellent fit. Fear of receiving compassion from others was the main mediator of the illness-related shame link with the quality of social relationships (β = -.22). The main mediator of the association between shame-related chronic illness and psychological health was experiential avoidance (β = -.21).This study shed light on possible psychological mechanisms linking feelings of shame associated with having a chronic condition and impaired social relationships and mental health. On one hand, resisting feelings of compassion and care from others and, on the other hand, avoiding difficult internal experiences and situations that might trigger them seem to underlie the impact of shame on psychological and social functioning in chronic patients. Copyright © 2018 John Wiley & Sons, Ltd.

  18. Special populations: care of the critically ill and injured during pandemics and disasters: CHEST consensus statement.

    Science.gov (United States)

    Dries, David; Reed, Mary Jane; Kissoon, Niranjan; Christian, Michael D; Dichter, Jeffrey R; Devereaux, Asha V; Upperman, Jeffrey S

    2014-10-01

    Past disasters have highlighted the need to prepare for subsets of critically ill, medically fragile patients. These special patient populations require focused disaster planning that will address their medical needs throughout the event to prevent clinical deterioration. The suggestions in this article are important for all who are involved in large-scale disasters or pandemics with multiple critically ill or injured patients, including frontline clinicians, hospital administrators, and public health or government officials. Key questions regarding the care of critically ill or injured special populations during disasters or pandemics were identified, and a systematic literature review (1985-2013) was performed. No studies of sufficient quality were identified. Therefore, the panel developed expert opinion-based suggestions using a modified Delphi process. The panel did not include pediatrics as a separate special population because pediatrics issues are embedded in each consensus document. Fourteen suggestions were formulated regarding the care of critically ill and injured patients from special populations during pandemics and disasters. The suggestions cover the following areas: defining special populations for mass critical care, special population planning, planning for access to regionalized service for special populations, triage and resource allocation of special populations, therapeutic considerations, and crisis standards of care for special populations. Chronically ill, technologically dependent, and complex critically ill patients present a unique challenge to preparing and implementing mass critical care. There are, however, unique opportunities to engage patients, primary physicians, advocacy groups, and professional organizations to lessen the impact of disaster on these special populations.

  19. A qualitative study examining health literacy and chronic illness self-management in Hispanic and non-Hispanic older adults

    Directory of Open Access Journals (Sweden)

    Jacobs RJ

    2017-04-01

    Full Text Available Robin J Jacobs,1 Raymond L Ownby,2 Amarilis Acevedo,3 Drenna Waldrop-Valverde4 1Department of Family and Community Medicine, Baylor College of Medicine, Houston, TX, 2College of Osteopathic Medicine, 3College of Psychology, Nova Southeastern University, Fort Lauderdale, FL, 4Nell Hodgson Woodruff School of Nursing, Emory University, Atlanta, GA, USA Purpose: Chronic illness and low levels of health literacy affect health outcomes for many individuals, particularly older adults and racial/ethnic minorities. This study sought to understand the knowledge, strengths, and areas of need regarding self-management of chronic illness in order to lay the groundwork for content development of an intervention to increase health literacy and maximize patient engagement in chronic disease self-care.Patients and methods: In-depth, qualitative interviews were conducted in Spanish and English with 25 older adults with various chronic illnesses. Topics included knowledge and understanding of chronic conditions, medications, and disease self-management skills. Qualitative data were coded by searching text and conducting cross-case analysis. An inductive analysis was then employed to allow for the patterns and themes to emerge.Results: Emerged themes included 1 social support, 2 coping strategies, 3 spirituality, 4 chronic disease health literacy, 5 anger, and 6 depression. While participants had a general overall knowledge of chronic illness, they had deficits in knowledge regarding their own illnesses and medications.Conclusion: Chronic illness self-management is a complex and dynamic behavioral process. This study identified themes that leverage patient motivation to engage in self-care in a personalized manner. This information will guide the development of an intervention to promote health literacy and optimal disease self-management. Keywords: health disparities, older adults, resilience, computer interventions, comorbidity, multimorbidity

  20. Chronic unremitting headache associated with Lyme disease-like illness

    Directory of Open Access Journals (Sweden)

    Pedro Andre Kowacs

    2013-07-01

    Full Text Available The Brazilian Lyme-disease-like illness (BLDLI or Baggio-Yoshinari syndrome is a unique zoonosis found in Brazil. It reproduces all the clinical symptoms of Lyme disease except for the high frequencies of relapse and the presence of autoimmune manifestations. Two cases of borreliosis manifesting with unremitting headache, which is a symptom associated with late-stage BLDLI, were presented. Clinical, therapeutic, and prognostic aspects of the BLDLI and its associated headaches were showed and discussed in this article. BLDLI diagnosis requires additional attention by physicians, since the disease has a tendency to progress to the late, recurrent stage or the chronic form, and the associated headache can be confused with chronic primary headache or with analgesic-overuse one. Special attention should be paid to patients with headaches who have traveled to endemic areas.

  1. The chronic care model versus disease management programs: a transaction cost analysis approach.

    Science.gov (United States)

    Leeman, Jennifer; Mark, Barbara

    2006-01-01

    The present article applies transaction cost analysis as a framework for better understanding health plans' decisions to improve chronic illness management by using disease management programs versus redesigning care within physician practices.

  2. Parental Involvement of Mothers with Chronic Illness and Children's Academic Achievement

    Science.gov (United States)

    Chen, Yung-Chi; Fish, Marian C.

    2013-01-01

    This study examined how maternal chronic illnesses may affect children's academic achievement through parental involvement. A total of 189 mothers diagnosed with chronic illnesses, such as multiple sclerosis, diabetes, cancer, HIV/AIDS, chronic pain, asthma, myelodysplasic syndrome, and fibromyalgia, and with a child in middle school or high…

  3. Psychopathology and self-esteem in chronic illness.

    Science.gov (United States)

    Pradhan, Prakash V; Shah, Henal; Rao, Pradeep; Ashturkar, Dhananjay; Ghaisas, Pradnya

    2003-02-01

    To evaluate psychopathology and self-esteem in chronic illness. 60 children and their parents were selected to participate in an open study. 30 children had epilepsy and the other 30 had thalassemia. Both the groups consisted of children randomly selected from the Epilepsy Clinic and Thalassemia Centre respectively, of a teaching general hospital. The children and their parents were interviewed and also rated on Childhood Psychopathology Measurement Schedule (CPMS) and Rosenberg's self esteem scale. The data was analysed using Pearson's chi square test and Pearson's correlation coefficient. The children were seen to have high psychopathology on CPMS (average score: thalassemia group = 28.56, epilepsy group = 26.06). Depression was the subscale with the maximum elevation in both groups. Behavior problems were high in epilepsy. In addition, sadness and disinterest in life were common symptoms in thalassemia while irritability and panic were high in epilepsy. Children with epilepsy perceived a change in lifestyle after diagnosis. Self-esteem was moderately affected in both groups and this affected compliance with treatment in thalassemia. Chronic illness affects psychological health and self esteem in children. Hence, in addition to the physical aspects it is necessary also, to focus on the psychological health of the child in order to ensure compliance and thus treat the child comprehensively.

  4. Chronic Illnesses and Depressive Symptoms Among Older People: Functional Limitations as a Mediator and Self-Perceptions of Aging as a Moderator.

    Science.gov (United States)

    Han, Jina

    2017-05-01

    This research examined the mediation of functional limitations in the relationship between chronic illnesses and depressive symptoms among older Americans along with tests for the moderation of self-perceptions of aging. Data from the Health and Retirement Study (2008, 2010, and 2012) were used. Longitudinal mediation models were tested using a sample of 3,382 Americans who responded to psychosocial questions and were over 65 years old in 2008. Functional limitations mediated the linkage between chronic illnesses and depressive symptoms. Negative self-perceptions of aging exacerbated the effects of chronic illnesses on depressive symptoms. Health care professionals should be aware of depressive symptoms in older adults reporting chronic illnesses and particularly in those reporting functional limitations. To decrease the risk of depressive symptoms caused by chronic illnesses, negative self-perceptions of aging may need to be challenged.

  5. Improving Communication About Serious Illness in Primary Care: A Review.

    Science.gov (United States)

    Lakin, Joshua R; Block, Susan D; Billings, J Andrew; Koritsanszky, Luca A; Cunningham, Rebecca; Wichmann, Lisa; Harvey, Doreen; Lamey, Jan; Bernacki, Rachelle E

    2016-09-01

    The Institute of Medicine recently called for systematic improvements in clinician-led conversations about goals, values, and care preferences for patients with serious and life-threatening illnesses. Studies suggest that these conversations are associated with improved outcomes for patients and their families, enhanced clinician satisfaction, and lower health care costs; however, the role of primary care clinicians in driving conversations about goals and priorities in serious illness is not well defined. To present a review of a structured search of the evidence base about communication in serious illness in primary care. MEDLINE was searched, via PubMed, on January 19, 2016, finding 911 articles; 126 articles were reviewed and selected titles were added from bibliography searches. Review of the literature informed 2 major topic areas: the role of primary care in communication about serious illness and clinician barriers and system failures that interfere with effective communication. Literature regarding the role that primary care plays in communication focused primarily on the ambiguity about whether primary care clinicians or specialists are responsible for initiating conversations, the benefits of primary care clinicians and specialists conducting conversations, and the quantity and quality of discussions. Timely and effective communication about serious illness in primary care is hampered by key clinician barriers, which include deficits in knowledge, skills, and attitudes; discomfort with prognostication; and lack of clarity about the appropriate timing and initiation of conversations. Finally, system failures in coordination, documentation, feedback, and quality improvement contribute to lack of conversations. Clinician and system barriers will challenge primary care clinicians and institutions to meet the needs of patients with serious illness. Ensuring that conversations about goals and values occur at the appropriate time for seriously ill patients will

  6. Shelter-based palliative care for the homeless terminally ill.

    Science.gov (United States)

    Podymow, Tiina; Turnbull, Jeffrey; Coyle, Doug

    2006-03-01

    The homeless have high rates of mortality, but live in environments not conducive to terminal care. Traditional palliative care hospitals may be reluctant to accept such patients, due to behavior or lifestyle concerns. The Ottawa Inner City Health Project (OICHP) is a pilot study to improve health care delivery to homeless adults. This is a retrospective analysis of a cohort of terminally ill homeless individuals and the effectiveness of shelter-based palliative care. As proof of principle, a cost comparison was performed. 28 consecutive homeless terminally ill patients were admitted and died at a shelter-based palliative care hospice. Demographics, diagnoses at admission and course were recorded. Burden of illness was assessed by medical and psychiatric diagnoses, addictions, Karnofsky scale and symptom management. An expert panel was convened to identify alternate care locations. Using standard costing scales, direct versus alternate care costs were compared. 28 patients had a mean age 49 years; average length of stay 120 days. DIAGNOSES: liver disease 43%, HIV/AIDS 25%, malignancy 25% and other 8%. Addiction to drugs or alcohol and mental illness in 82% of patients. Karnofsky performance score mean 40 +/- 16.8. Pain management with continuous opiates in 71%. The majority reunited with family. Compared to alternate care locations, the hospice projected 1.39 million dollars savings for the patients described. The homeless terminally ill have a heavy burden of disease including physical illness, psychiatric conditions and addictions. Shelter-based palliative care can provide effective end-of-life care to terminally ill homeless individuals at potentially substantial cost savings.

  7. Separate and joint effects of physical and mental health on participation of people with somatic chronic illness.

    NARCIS (Netherlands)

    Jansen, D.L.; Rijken, M.

    2011-01-01

    Aim: To examine the extent to which people with a somatic chronic illness participate in paid jobs, volunteer work, informal care and social activities, and to investigate the separate and joint effects of physical and mental health on participation. Background. Compared with healthy people, people

  8. Access to Mobile Communication Technology and Willingness to Participate in Automated Telemedicine Calls Among Chronically Ill Patients in Honduras

    Science.gov (United States)

    Mendoza-Avelares, Milton O.; Milton, Evan C.; Lange, Ilta; Fajardo, Roosevelt

    2010-01-01

    Abstract Objectives: Patients in underdeveloped countries may be left behind by advances in telehealthcare. We surveyed chronically ill patients with low incomes in Honduras to measure their use of mobile technologies and willingness to participate in mobile disease management support. Materials and Methods: 624 chronically ill primary care patients in Honduras were surveyed. We examined variation in telephone access across groups defined by patients' sociodemographic characteristics, diagnoses, and access to care. Logistic regression was used to identify independent correlates of patients' interest in automated telephonic support for disease management. Results: Participants had limited education (mean 4.8 years), and 65% were unemployed. Eighty-four percent had telephone access, and 78% had cell phones. Most respondents had voicemail (61%) and text messaging (58%). Mobile technologies were particularly common among patients who had to forego clinic visits and medications due to cost concerns (each p 80%) reported that they would be willing to receive automated calls focused on appointment reminders, medication adherence, health status monitoring, and self-care education. Patients were more likely to be willing to participate in automated telemedicine services if they had to cancel a clinic appointment due to transportation problems or forego medication due to cost pressures. Conclusions: Even in this poor region of Honduras, most chronically ill patients have access to mobile technology, and most are willing to participate in automated telephone disease management support. Given barriers to in-person care, new models of mobile healthcare should be developed for chronically ill patients in developing countries. PMID:21062234

  9. Cytokines in chronically critically ill patients after activity and rest.

    Science.gov (United States)

    Winkelman, Chris; Higgins, Patricia A; Chen, Yea Jyh Kathy; Levine, Alan D

    2007-04-01

    Inflammation, a common problem for patients in the intensive care unit (ICU), frequently is associated with serious and prolonged critical illnesses. To date, no study has examined whether physical activity influences inflammatory factors in critically ill adults. The objectives of this study were to (a) examine the relationships between type and duration of physical activity and serum levels of interleukin 6 (IL-6), a proinflammatory cytokine; IL-10, an anti-inflammatory cytokine; and their ratio and (b) determine if there are associations between cytokines or their ratio and activity or outcomes. This descriptive feasibility study investigated the approaches to measuring levels of physical activity and its relationship to serum levels of IL-6 and IL-10 and the ratio between them in patients with prolonged mechanical ventilation during periods of activity and rest. Measurements included serum IL-6 and IL-10 levels, direct observation and actigraphy, and prospective chart review. Ten critically ill patients who were mechanically ventilated for an average of 10 days in a large, urban, teaching hospital were enrolled. The average ratio of IL-6 to IL-10 improved after an average of 14.7 min of passive physical activity, typically multiple in-bed turns associated with hygiene. IL-6, IL-10, and their ratio were not associated with patient outcomes of weaning success or length of stay. High levels of IL-6 were associated with mortality. Cytokine balance may be improved by low levels of activity among patients with prolonged critical illness. The pattern of cytokines produced after activity may improve patients' recovery from prolonged critical illness and mechanical ventilation.

  10. Illness cognitions as a pathway between religiousness and subjective health in chronic cardiac patients.

    Science.gov (United States)

    Karademas, Evangelos C

    2010-03-01

    The aim of this study was to examine the role of illness cognitions as a possible pathway between religiousness and subjective health in chronic illness. A sample of 135 chronic cardiac patients completed questionnaires about intrinsic religiousness, frequency of church service attendance, basic illness cognitions (i.e., helplessness, illness acceptance, perceived benefits), and physical and emotional well-being. According to the results, religiousness was significantly associated with subjective health. However, this relationship was indirect, with helplessness and illness acceptance serving as mediators between intrinsic religiousness and health. This finding is significant for understanding the complex relation of religiousness to chronic patients' well-being.

  11. Studies on common illnesses and medical care utilization patterns of adolescents in Hong Kong.

    Science.gov (United States)

    Lau, J T; Yu, A; Cheung, J C; Leung, S S

    2000-12-01

    To estimate the prevalences of common illnesses in Hong Kong adolescents, the sociodemographic and selected risk factors associated with these illnesses, and their health care utilization behavior and attitudes. A cross-sectional questionnaire survey of 3355 participating secondary school students (response rate = 98%). Self-reported 3-month prevalences were obtained for cough/cold/influenza (55.2%), digestive disorders (34.6%), accidental injuries (29.5%), headache/dizziness (23.6%), chronic anxiety/insomnia (20.1%), skin problems (9.5%), asthma (3.8%), liver disease (1.3%), and menstrual pain (13.8% of female students). Self-perceived poor health, smoking, and alcohol consumption were associated with many of these illnesses. Treatment choice depended on the illness suffered (e.g., most students with respiratory problems consulted medical practitioners, whereas most with chronic anxiety/insomnia did not). Many students lacked trust in their doctors, doctor-shopped, relied heavily on self-medication, did not comply with prescribed treatments, would not seek help about medical problems, felt they had insufficient access to health information, and wanted confidential health care. This study examined for the first time the common illnesses and health care utilization patterns of Hong Kong adolescents. Students with chronic anxiety/insomnia were much less likely to seek care, indicating a need for better education on mental health. Efforts to prevent smoking and alcohol consumption among adolescents need to be strengthened. The students' attitudes, poor compliance and help-seeking behaviors suggest suboptimal use of the health care system. Our findings are useful for international comparisons by medical practitioners, health care managers, and researchers.

  12. Building a new life: a chaplain's theory based case study of chronic illness.

    Science.gov (United States)

    Risk, James L

    2013-01-01

    This article presents the case study of spiritual care for a patient suffering from Parkinson's disease who was referred to the chaplain in an out-patient depression research program. The chaplain's interventions were informed by an application of narrative theory, and the article demonstrates how this theory enabled the chaplain to help a patient develop new coping strategies for dealing with chronic disease. Using narrative theory, the chaplain assisted the patient to develop a new sense of identity as a spiritual, contingent self as the disease eroded his physical self and former life. The article includes a description of a patient's spiritual needs, chaplain interventions, and an outcomes measure of those interventions. The author argues that narrative theory provides chaplains with a language to identify and craft the unique intervention that spiritual care has in the life trajectory of this Parkinson's patient and other patients dealing with chronic illnesses.

  13. Providing care for critically ill surgical patients: challenges and recommendations.

    Science.gov (United States)

    Tisherman, Samuel A; Kaplan, Lewis; Gracias, Vicente H; Beilman, Gregory J; Toevs, Christine; Byrnes, Matthew C; Coopersmith, Craig M

    2013-07-01

    Providing optimal care for critically ill and injured surgical patients will become more challenging with staff shortages for surgeons and intensivists. This white paper addresses the historical issues behind the present situation, the need for all intensivists to engage in dedicated critical care per the intensivist model, and the recognition that intensivists from all specialties can provide optimal care for the critically ill surgical patient, particularly with continuing involvement by the surgeon of record. The new acute care surgery training paradigm (including trauma, surgical critical care, and emergency general surgery) has been developed to increase interest in trauma and surgical critical care, but the number of interested trainees remains too few. Recommendations are made for broadening the multidisciplinary training and practice opportunities in surgical critical care for intensivists from all base specialties and for maintaining the intensivist model within acute care surgery practice. Support from academic and administrative leadership, as well as national organizations, will be needed.

  14. The impacts of using community health volunteers to coach medication safety behaviors among rural elders with chronic illnesses.

    Science.gov (United States)

    Wang, Chi-Jane; Fetzer, Susan J; Yang, Yi-Ching; Wang, Jing-Jy

    2013-01-01

    It is a challenge for rural health professionals to promote medication safety among older adults taking multiple medications. A volunteer coaching program to promote medication safety among rural elders with chronic illnesses was designed and evaluated. A community-based interventional study randomly assigned 62 rural elders with at least two chronic illnesses to routine care plus volunteer coaching or routine care alone. The volunteer coaching group received a medication safety program, including a coach and reminders by well-trained volunteers, as well as three home visits and five telephone calls over a two-month period. All the subjects received routine medication safety instructions for their chronic illnesses. The program was evaluated using pre- and post-tests of knowledge, attitude and behaviors with regard to medication safety. Results show the volunteer coaching group improved their knowledge of medication safety, but there was no change in attitude after the two-month study period. Moreover, the group demonstrated three improved medication safety behaviors compared to the routine care group. The volunteer coaching program and instructions with pictorial aids can provide a reference for community health professionals who wish to improve the medication safety of chronically ill elders. Copyright © 2013 Mosby, Inc. All rights reserved.

  15. The Chronic Illness Problem Inventory as a measure of dysfunction in chronic pain patients.

    Science.gov (United States)

    Romano, J M; Turner, J A; Jensen, M P

    1992-04-01

    Assessment of physical and psychosocial dysfunction is recognized as essential in chronic pain patient evaluation. One instrument, the Sickness Impact Profile (SIP), has demonstrated good reliability and validity as a measure of dysfunction among chronic pain patients. An alternate measure, the Chronic Illness Problem Inventory (CIPI), is shorter and more easily scored than the SIP, but as yet has not been applied widely to chronic pain problems. In the present study, 95 chronic low back pain patients completed the SIP, the CIPI, activity diaries, the McGill Pain Questionnaire (MPQ), and the Center for Epidemiologic Studies-Depression scale (CES-D), before participating in a chronic pain treatment study. Overt pain behaviors were also coded from videotapes of a standardized assessment protocol. Seventy-five subjects completed the measures post-treatment. The results indicate that although the SIP and the CIPI are significantly correlated and appear to be measuring similar constructs, there is also substantial unshared variance between them, suggesting that they may tap somewhat different aspects of dysfunction in chronic pain. The CIPI shows promise as a useful alternative measure of dysfunction in chronic low back pain patients, but requires further validation for this purpose.

  16. An Infusion Model for Including Content on Elders with Chronic Illness in the Curriculum

    Directory of Open Access Journals (Sweden)

    Sherry M. Cummings

    2000-05-01

    Full Text Available Older people with chronic mental illness (CMI are experiencing longer life expectancies that parallel those of the general population. Due to their experience of having CMI, these older adults present unique issues that affect service delivery and care provision. Content on this population is often omitted in the curriculum, which leaves students unprepared to practice with these clients. This article proposes an infusion model that can be used in baccalaureate or graduate foundation courses to increase exposure to elders with CMI.

  17. Chronical Illness and the Issue of Context in Dietary Counselling

    DEFF Research Database (Denmark)

    Kristensen, Søren Tange

    food and eating issues are taken into account in dietary counselling and how this reflects broader epistemological and political issues related to the prevention and management of chronic illness. A concluding statement from the study is that in order to empower clients, the complexity and contextual......In dietary counselling contextual food and eating issues are increasingly considered important when trying to promote dietary change. Besides transferring knowledge on healthy eating based on an assessment of the nutritional adequacy of clients diet priority is given to obtain the full dietary...... story including contextual issues concerning relationships, family values, culture, finances, and personal beliefs. The focus on contextual issues seems to reflect a holistic and empowering approach to the promotion of health. Also, the consideration of contextual issues can be seen as essential...

  18. Pre-travel advice seeking from GPs by travellers with chronic illness seen at a travel clinic.

    Science.gov (United States)

    Gagneux-Brunon, Amandine; Andrillat, Carole; Fouilloux, Pascale; Daoud, Fatiha; Defontaine, Christiane; Charles, Rodolphe; Lucht, Frédéric; Botelho-Nevers, Elisabeth

    2016-03-01

    Travellers are ageing and frequently report chronic illness. Pre-travel health advice is crucial, particularly in this subgroup, and general practitioners (GPs) are first in line for treatment adjustment before departure. Our aim is to evaluate pre-travel health advice seeking from GPs by travellers with chronic illness seen at a travel clinic. A cross-sectional observational survey using a questionnaire was conducted between August 2013 and July 2014 in travellers attending the travel medicine clinic of a tertiary university hospital in France. During the study, 2019 travellers were included. Mean age was 39.4 years (±18.8). Three hundred and ninety-one (19.4%) travellers reported a history of a chronic illness. Arterial hypertension and diabetes mellitus were the most frequently reported illnesses, affecting, respectively, 168 (8.3%) travellers and 102 (5.1%). Hajj pilgrims were more likely to report a history of chronic illness than other travellers. Only 810 (40.1%) travellers sought pre-travel advice from their GP. Six hundred and fifty-two (40.1%) healthy travellers and 158 (40.5%) travellers reporting chronic illness sought pre-travel advice from their GP (P = 0.96). Travellers with a history of chronic illness do not seek pre-travel health advice from their GP more frequently than healthy travellers. Travel health specialists are generally not the best practitioners to manage the care of underlying medical conditions presenting risks during travel. However, GPs offer continuity and disease management expertise to improve the specificity of pre-travel planning. Thus, ongoing collaboration between the traveller, GP and travel health specialist is likely to yield the best outcomes. © International Society of Travel Medicine, 2016. All rights reserved. Published by Oxford University Press. For permissions, please e-mail: journals.permissions@oup.com.

  19. Persistent Delirium in Chronic Critical Illness as a Prodrome Syndrome before Death.

    Science.gov (United States)

    DeForest, Anna; Blinderman, Craig D

    2017-05-01

    Chronic critical illness (CCI) patients have poor functional outcomes, high risk of mortality, and significant sequelae, including delirium and cognitive dysfunction. The prognostic significance of persistent delirium in patients with CCI has not been well described. We report a case of a patient with CCI following major cardiac surgery who was hemodynamically stable following a long course in the cardiothoracic intensive care unit (CTICU), but had persistent and unremitting delirium. Despite both pharmacological and nonpharmacological approaches to improve his delirium, the patient ultimately continued to have symptoms of delirium and subsequently died in the CTICU. Efforts to reconsider the goals of care, given his family's understanding of his values, were met with resistance as his cardiothoracic surgeon believed that he had a reasonable chance of recovery since his organs were not in failure. This case description raises the question of whether we should consider persistent delirium as a prodrome syndrome before death in patients with CCI. Study and analysis of a case of a patient with CCI following major cardiothoracic surgery who was hemodynamically stable with persistent delirium. Further studies of the prevalence and outcomes of prolonged or persistent agitated delirium in patients with chronic critical illness are needed to provide prognostic information that can assist patients and families in receiving care that accords with their goals and values.

  20. Older Patients' Perspectives on Quality of Serious Illness Care in Primary Care.

    Science.gov (United States)

    Abu Al Hamayel, Nebras; Isenberg, Sarina R; Hannum, Susan M; Sixon, Joshua; Smith, Katherine Clegg; Dy, Sydney M

    2018-01-01

    Despite increased focus on measuring and improving quality of serious illness care, there has been little emphasis on the primary care context or incorporation of the patient perspective. To explore older patients' perspectives on the quality of serious illness care in primary care. Qualitative interview study. Twenty patients aged 60 or older who were at risk for or living with serious illness and who had participated in the clinic's quality improvement initiative. We used a semistructured, open-ended guide focusing on how older patients perceived quality of serious illness care, particularly in primary care. We transcribed interviews verbatim and inductively identified codes. We identified emergent themes using a thematic and constant comparative method. We identified 5 key themes: (1) the importance of patient-centered communication, (2) coordination of care, (3) the shared decision-making process, (4) clinician competence, and (5) access to care. Communication was an overarching theme that facilitated coordination of care between patients and their clinicians, empowered patients for shared decision-making, related to clinicians' perceived competence, and enabled access to primary and specialty care. Although access to care is not traditionally considered an aspect of quality, patients considered this integral to the quality of care they received. Patients perceived serious illness care as a key aspect of quality in primary care. Efforts to improve quality measurement and implementation of quality improvement initiatives in serious illness care should consider these aspects of care that patients deem important, particularly communication as an overarching priority.

  1. Reconciling employment with caring for a husband with an advanced illness

    Directory of Open Access Journals (Sweden)

    Gysels Marjolein

    2009-11-01

    Full Text Available Abstract Background Little is known about combining work with caring for a person with advanced illness. This is important given the increasing number of women in the workforce and current policy seeking to increase care in the community. The aim of this paper was to explore the meaning of work for women caring for a husband with an advanced illness and the consequences of combining these two roles. Methods A purposive sample of 15 carers was recruited from a hospital and from the community, via the patients they cared for. Their illnesses included chronic obstructive pulmonary disease, cancer, motor neurone disease, and heart failure. Data were collected through semi-structured, in-depth interviews that were tape-recorded and transcribed verbatim. A Grounded Theory approach was used and case studies were developed. NVivo software facilitated the management and analysis of the data. Results Caring presented challenges to carers' work life. It diminished productivity or the quality of work, and led to missed opportunities for promotion. Work had an effect on the quality of care and the relationship with the patient, which eventually led to work being given up for caring. Three carers resisted the pressures to give up work and used it as a coping strategy. Conclusion A positive choice to remain in employment does not necessarily signal reluctance to care. Caring arrangements need to be understood from the common and separate interests of carers and the people they support.

  2. Reconciling employment with caring for a husband with an advanced illness.

    Science.gov (United States)

    Gysels, Marjolein; Higginson, Irene J

    2009-11-25

    Little is known about combining work with caring for a person with advanced illness. This is important given the increasing number of women in the workforce and current policy seeking to increase care in the community. The aim of this paper was to explore the meaning of work for women caring for a husband with an advanced illness and the consequences of combining these two roles. A purposive sample of 15 carers was recruited from a hospital and from the community, via the patients they cared for. Their illnesses included chronic obstructive pulmonary disease, cancer, motor neurone disease, and heart failure. Data were collected through semi-structured, in-depth interviews that were tape-recorded and transcribed verbatim. A Grounded Theory approach was used and case studies were developed. NVivo software facilitated the management and analysis of the data. Caring presented challenges to carers' work life. It diminished productivity or the quality of work, and led to missed opportunities for promotion. Work had an effect on the quality of care and the relationship with the patient, which eventually led to work being given up for caring. Three carers resisted the pressures to give up work and used it as a coping strategy. A positive choice to remain in employment does not necessarily signal reluctance to care. Caring arrangements need to be understood from the common and separate interests of carers and the people they support.

  3. Development and initial validation of primary care provider mental illness management and team-based care self-efficacy scales.

    Science.gov (United States)

    Loeb, Danielle F; Crane, Lori A; Leister, Erin; Bayliss, Elizabeth A; Ludman, Evette; Binswanger, Ingrid A; Kline, Danielle M; Smith, Meredith; deGruy, Frank V; Nease, Donald E; Dickinson, L Miriam

    Develop and validate self-efficacy scales for primary care provider (PCP) mental illness management and team-based care participation. We developed three self-efficacy scales: team-based care (TBC), mental illness management (MIM), and chronic medical illness (CMI). We developed the scales using Bandura's Social Cognitive Theory as a guide. The survey instrument included items from previously validated scales on team-based care and mental illness management. We administered a mail survey to 900 randomly selected Colorado physicians. We conducted exploratory principal factor analysis with oblique rotation. We constructed self-efficacy scales and calculated standardized Cronbach's alpha coefficients to test internal consistency. We calculated correlation coefficients between the MIM and TBC scales and previously validated measures related to each scale to evaluate convergent validity. We tested correlations between the TBC and the measures expected to correlate with the MIM scale and vice versa to evaluate discriminant validity. PCPs (n=402, response rate=49%) from diverse practice settings completed surveys. Items grouped into factors as expected. Cronbach's alphas were 0.94, 0.88, and 0.83 for TBC, MIM, and CMI scales respectively. In convergent validity testing, the TBC scale was correlated as predicted with scales assessing communications strategies, attitudes toward teams, and other teamwork indicators (r=0.25 to 0.40, all statistically significant). Likewise, the MIM scale was significantly correlated with several items about knowledge and experience managing mental illness (r=0.24 to 41, all statistically significant). As expected in discriminant validity testing, the TBC scale had only very weak correlations with the mental illness knowledge and experience managing mental illness items (r=0.03 to 0.12). Likewise, the MIM scale was only weakly correlated with measures of team-based care (r=0.09 to.17). This validation study of MIM and TBC self-efficacy scales

  4. 77 FR 64597 - Proposed Information Collection (Survey of Chronic Gastrointestinal Illness in Persian Gulf...

    Science.gov (United States)

    2012-10-22

    ... of Chronic Gastrointestinal Illness in Persian Gulf Veterans (Irritable Bowel Syndrome--Diarrhea... information needed to evaluate chronic gastrointestinal disorders in Persian Gulf War Veterans. DATES: Written... Gastrointestinal Illness in Persian Gulf Veterans, VA Form 10-21092c. OMB Control Number: 2900-0742. Type of Review...

  5. 78 FR 6404 - Agency Information Collection (Survey of Chronic Gastrointestinal Illness in Persian Gulf...

    Science.gov (United States)

    2013-01-30

    ... of Chronic Gastrointestinal Illness in Persian Gulf Veterans) Activities Under OMB Review AGENCY.... Survey of Chronic Gastrointestinal Illness in Persian Gulf Veterans, VA Form 10-21092a. b. VA Research...: Approximately 25 percent military troops who were deployed in the first Persian Gulf War returned with...

  6. Siblings of children with a chronic illness: a meta-analysis.

    Science.gov (United States)

    Sharpe, Donald; Rossiter, Lucille

    2002-12-01

    To review the literature pertaining to the siblings of children with a chronic illness. Fifty-one published studies and 103 effect sizes were identified and examined through meta-analysis. We found (1) a modest, negative effect size statistic existed for siblings of children with a chronic illness relative to comparison participants or normative data; (2) heterogeneity existed for those effect sizes; (3) parent reports were more negative than child self-reports; (4) psychological functioning (i.e., depression, anxiety), peer activities, and cognitive development scores were lower for siblings of children with a chronic illness compared to controls; and (5) a cluster of chronic illnesses with daily treatment regimes was associated with negative effect statistics compared to chronic illnesses that did not affect daily functioning. More methodologically sound studies investigating the psychological functioning of siblings of children with a chronic illness are needed. Clinicians need to know that siblings of children with a chronic illness are at risk for negative psychological effects. Intervention programs for the siblings and families of children with a chronic illness should be developed.

  7. Online Peer-to-Peer Communities in the Daily Lives of People With Chronic Illness: A Qualitative Systematic Review.

    Science.gov (United States)

    Kingod, Natasja; Cleal, Bryan; Wahlberg, Ayo; Husted, Gitte R

    2017-01-01

    This qualitative systematic review investigated how individuals with chronic illness experience online peer-to-peer support and how their experiences influence daily life with illness. Selected studies were appraised by quality criteria focused upon research questions and study design, participant selection, methods of data collection, and methods of analysis. Four themes were identified: (a) illness-associated identity work, (b) social support and connectivity, (c) experiential knowledge sharing, and (d) collective voice and mobilization. Findings indicate that online peer-to-peer communities provide a supportive space for daily self-care related to chronic illness. Online communities provided a valued space to strengthen social ties and exchange knowledge that supported offline ties and patient-doctor relationships. Individuals used online communities to exchange experiential knowledge about everyday life with illness. This type of knowledge was perceived as extending far beyond medical care. Online communities were also used to mobilize and raise collective awareness about illness-specific concerns. © The Author(s) 2016.

  8. Thinking positively about chronic illness: An exploration of optimism, illness perceptions and well-being in patients with Parkinson's disease.

    Science.gov (United States)

    Hurt, Catherine S; Burn, David J; Hindle, John; Samuel, Mike; Wilson, Ken; Brown, Richard G

    2014-05-01

    Holding positive beliefs about illness and having an optimistic outlook have been associated with increased well-being across a range of health conditions. However, research has indicated that being very optimistic may not actually be beneficial, and holding a realistic attitude is more adaptive in some forms of chronic illness, for example, Parkinson's disease (PD). This study aimed to explore the nature of relationships between illness perceptions, optimism and well-being: specifically, whether a linear or non-linear relationship best described the data. Additionally, the proposed moderating effect of optimism on the relationship between illness perceptions and well-being was tested. A total of 109 participants with idiopathic PD completed questionnaire measures of illness perception, optimism, mood and health-related quality of life (HRQoL). Multiple regression analyses were used to explore relationships between illness perceptions, optimism, mood and HRQoL. The potential curvilinear effects of illness perceptions and optimism were modelled using squared variables and linear and quadratic curve estimation. Holding positive illness perceptions predicted better well-being. Some evidence for a non-linear relationship between optimism and mood was found. Optimism had a significant moderating effect on the relationship between specific illness perceptions and outcome. Optimism appears to provide protection against some negative perceptions of illness and was associated with better mood and HRQoL. The findings indicate that specific illness perceptions may be beneficial targets for therapy. Therapeutic interventions should focus on enhancing positive perceptions of PD but potentially more importantly general optimistic attitude to maximize well-being. What is already known on this subject? Positive illness perceptions and high optimism are associated with better well-being in a range of conditions, both chronic and acute. Preliminary studies suggest that in chronic

  9. The family experience of care in chronic situation

    Directory of Open Access Journals (Sweden)

    Roseney Bellato

    2016-06-01

    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.

  10. Normalization behaviours of rural fathers living with chronically-ill children: an Australian experience.

    Science.gov (United States)

    Peck, Blake; Lillibridge, Jennifer

    2005-03-01

    This article reports findings from a larger qualitative study conducted to gain insight into the experience of fathers living with their chronically-ill children in rural Victoria, Australia. Data were collected via unstructured interviews with four fathers. The findings presented in this article explore the phenomena of normalization for fathers within the chronic illness experience. Fathers described normalizing the experience of living with their chronically-ill child as involving a combination of various coping strategies and behaviours including: (1) accepting the child's condition, (2) changing expectations, (3) focusing energies on a day-to-day basis, (4) minimizing knowledge-seeking behaviours, and (5) engaging in external distraction activities. Findings highlight the complex and unique normalization strategies these men utilized and contribute to knowledge and understanding of the complex nature of raising a chronically-ill child in rural Australia and provide a sound basis upon which to guide an ongoing and holistic assessment of fathers with chronically-ill children.

  11. The duality of health technology in chronic illness: how designers envision our future.

    Science.gov (United States)

    Lehoux, Pascale

    2008-06-01

    This essay critically explores the role of technological innovation in the constitution of chronic states and illness. Drawing on the co-construction of technology and society perspective, it focuses more specifically on the way in which innovation designers envisage the enhancement of the chronically ill and build certain kinds of socio-technical configuration to deal with chronic illness. Using the case of ;intelligent distance patient monitoring' as an illustration, the paper argues that technology creates as much as it solves the problem of chronic illness. Technology is recursively embedded in chronic illness and it generates dual effects: it constrains and sustains users' daily practices. Only by recognizing technology's duality and eventually transcending it will research and policy initiatives be able to deal creatively and responsibly with the design of our future health experiences.

  12. Acute Care Use for Ambulatory Care-Sensitive Conditions in High-Cost Users of Medical Care with Mental Illness and Addictions.

    Science.gov (United States)

    Hensel, Jennifer M; Taylor, Valerie H; Fung, Kinwah; Yang, Rebecca; Vigod, Simone N

    2018-01-01

    The role of mental illness and addiction in acute care use for chronic medical conditions that are sensitive to ambulatory care management requires focussed attention. This study examines how mental illness or addiction affects risk for repeat hospitalization and/or emergency department use for ambulatory care-sensitive conditions (ACSCs) among high-cost users of medical care. A retrospective, population-based cohort study using data from Ontario, Canada. Among the top 10% of medical care users ranked by cost, we determined rates of any and repeat care use (hospitalizations and emergency department [ED] visits) between April 1, 2011, and March 31, 2012, for 14 consensus established ACSCs and compared them between those with and without diagnosed mental illness or addiction during the 2 years prior. Risk ratios were adjusted (aRR) for age, sex, residence, and income quintile. Among 314,936 high-cost users, 35.9% had a mental illness or addiction. Compared to those without, individuals with mental illness or addiction were more likely to have an ED visit or hospitalization for any ACSC (22.8% vs. 19.6%; aRR, 1.21; 95% confidence interval [CI], 1.20-1.23). They were also more likely to have repeat ED visits or hospitalizations for the same ACSC (6.2% vs. 4.4% of those without; aRR, 1.48; 95% CI, 1.44-1.53). These associations were stronger in stratifications by mental illness diagnostic subgroup, particularly for those with a major mental illness. The presence of mental illness and addiction among high-cost users of medical services may represent an unmet need for quality ambulatory and primary care.

  13. Strategic approaches to enhanced health service delivery for Aboriginal and Torres Strait Islander people with chronic illness: a qualitative study

    Directory of Open Access Journals (Sweden)

    Aspin Clive

    2012-06-01

    Full Text Available Abstract Background Aboriginal and Torres Strait Islander people with chronic illness confront multiple challenges that contribute to their poor health outcomes, and to the health disparities that exist in Australian society. This study aimed to identify barriers and facilitators to care and support for Aboriginal and Torres Strait Islander people with chronic illness. Methods Face-to-face in-depth interviews were conducted with Aboriginal and Torres Strait Islander people with diabetes, chronic heart failure or chronic obstructive pulmonary disease (n-16 and family carers (n = 3. Interviews were transcribed verbatim and the transcripts were analysed using content analysis. Recurrent themes were identified and these were used to inform the key findings of the study. Results Participants reported both negative and positive influences that affected their health and well-being. Among the negative influences, they identified poor access to culturally appropriate health services, dislocation from cultural support systems, exposure to racism, poor communication with health care professionals and economic hardship. As a counter to these, participants pointed to cultural and traditional knowledge as well as insights from their own experiences. Participants said that while they often felt overwhelmed and confused by the burden of chronic illness, they drew strength from being part of an Aboriginal community, having regular and ongoing access to primary health care, and being well-connected to a supportive family network. Within this context, elders played an important role in increasing people’s awareness of the impact of chronic illness on people and communities. Conclusions Our study indicated that non-Indigenous health services struggled to meet the needs of Aboriginal and Torres Strait Islander people with chronic illness. To address their complex needs, health services could gain considerably by recognising that Aboriginal and Torres Strait

  14. Specialist home-based nursing services for children with acute and chronic illnesses.

    Science.gov (United States)

    Parab, Chitra S; Cooper, Carolyn; Woolfenden, Susan; Piper, Susan M

    2013-06-15

    Specialist paediatric home-based nursing services have been proposed as a cost-effective means of reducing distress resulting from hospital admissions, while enhancing primary care and reducing length of hospital stay. This review is an update of our original review, which was published in 2006. To evaluate specialist home-based nursing services for children with acute and chronic illnesses. We searched the following databases in February 2012: the Cochrane Central Register of Controlled Trials (CENTRAL) in The Cochrane Library 2012 Issue 2, Ovid MEDLINE, EMBASE, PsycINFO, CINAHL and Sociological Abstracts. We also searched ClinicalTrials.gov and the WHO International Clinical Trials Registry Platform. No language restrictions were applied. Randomised controlled trials (RCTs) of children from birth to age 18 years with acute or chronic illnesses allocated to specialist home-based nursing services compared with conventional health care. Outcomes included utilisation of health care, physical and mental health, satisfaction, adverse health outcomes and costs. Two review authors extracted data from the studies independently and resolved any discrepancies by recourse to a third author. Meta-analysis was not appropriate because of the clinical diversity of the studies and the lack of common outcome measures. We screened 4226 titles to yield seven RCTs with a total of 840 participants. Participants, interventions and outcomes were diverse. No significant differences were reported in health outcomes; two studies reported a reduction in the hospital stay with no difference in the hospital readmission rates. Three studies reported a reduction in parental anxiety and improvement in child behaviours was reported in three studies. Overall increased parental satisfaction was reported in three studies. Also, better parental coping and family functioning was reported in one study. By contrast, one study each reported no impact on parental burden of care or on functional status of

  15. Tailoring Self-Management in Chronic Care

    NARCIS (Netherlands)

    Touwen, ID

    2016-01-01

    Self-management is nowadays seen as an important element in chronic care and therefore, self-management is increasingly embedded in chronic care guidelines; however, implementation in clinical practice is a slow and difficult process. Evidence, from research on self-management interventions, shows

  16. Forging partnerships between rural women with chronic conditions and their health care providers.

    Science.gov (United States)

    Cudney, Shirley; Weinert, Clarann; Kinion, Elizabeth

    2011-03-01

    Successful adaptation to chronic illness is enhanced by active client-health care provider partnerships. The purposes of this article are to (a) examine the health care partnership needs of western rural women with chronic illness who participated in a computer-based support and education project, (b) describe how the role of the women in the partnership can be maximized by the use of a personal health record and improving health literacy, and (c) discuss ways health care providers can enhance their role in the partnership by careful listening and creating environments conducive to forging productive client-provider partnerships.

  17. Increased prevalence of chronic physical health disorders in Australians with diagnosed mental illness.

    Science.gov (United States)

    Scott, David; Burke, Karena; Williams, Susan; Happell, Brenda; Canoy, Doreen; Ronan, Kevin

    2012-10-01

    To compare chronic physical health disorder prevalence amongst Australian adults with and without mental illness. Total n=1,716 participants (58% female) with a mean age of 52 ± 13 years (range: 18 to 89 years) completed an online survey of Australian adults in 2010. Outcome measures including prevalence of chronic physical conditions and self-reported body mass index (BMI) in n=387 (23%) with a self-reported mental illness diagnosis were compared to respondents without mental illness. A significantly higher proportion of participants with mental illness were obese (BMI ≥ 30; 31 vs 24%, p=0.005). Adjusted odds ratios (OR) for coronary heart disease, diabetes, chronic bronchitis or emphysema, asthma, irritable bowel syndrome, and food allergies or intolerances (OR range: 1.54-3.19) demonstrated that chronic physical disorders were significantly more common in participants with a mental illness. Australian adults with a diagnosis for mental illness have a significantly increased likelihood of demonstrating chronic physical health disorders compared to persons without mental illness. Health professionals must be alert to the increased likelihood of comorbid chronic physical disorders in persons with a mental illness and should consider the adoption of holistic approaches when treating those with either a mental or physical illness. © 2012 The Authors. ANZJPH © 2012 Public Health Association of Australia.

  18. Family carers: A role in addressing chronic disease risk behaviours for people with a mental illness?

    Science.gov (United States)

    Bailey, Jacqueline M; Wye, Paula M; Wiggers, John H; Bartlem, Kate M; Bowman, Jennifer A

    2017-09-01

    People with a mental illness experience greater chronic disease morbidity and mortality compared to those without mental illness. Family carers have the potential to promote the health behaviours of those they care for however factors which may influence the extent to which they do so have not been reported. An exploratory study was conducted to investigate carers': 1) promotion of fruit and vegetable consumption, physical activity, quitting smoking, and reducing alcohol consumption; 2) perceptions of their role and ability to promote such behaviours; 3) and the association between carer perceptions and the promotion of such behaviours. A cross-sectional survey was conducted with mental health carers ( N  = 144, 37.6% response rate) in New South Wales, Australia in 2013. Associations between current promotion of health behaviours and carer perceptions were explored through multivariate regression analysis in 2016. A majority of respondents promoted fruit and vegetable consumption (63.8%), physical activity (60.3%), quitting smoking (56.3%), and reducing alcohol consumption (56.2%) to the person they cared for. A perception that it was 'very important' to have a positive influence on these behaviours was positively related with promotion of each of the four behaviours, with those holding such a view being more likely to promote such behaviours, than those who did not (odds ratio: 9.47-24.13, p  mental illness.

  19. Hospital-based school for children with chronic illness in Taiwan.

    Science.gov (United States)

    Chen, Der-Fang; Tsai, Tsuen-Chiuan; Su, Yu-Tsun; Lin, Chi-Wei

    2015-10-01

    To provide educational support and avoid unwanted damage that may impede learning for children with chronic illness, the learning environment should be friendly and safe. There is a need to establish schools inside hospitals, however, which may be neglected in a highly efficient health care system. A study was conducted to identify hospital-based schools for sick children in Taiwan, and to explore the barriers for implementation. The data were collected by structured telephone interview and retrieval of hospital web information. The study targeted social workers and nurses in the pediatric wards of 29 hospitals, plus officials from the Education Bureau in Taiwan. The interviewers inquired about the availability of a formal educational program inside hospitals and the barriers (if any) in providing educational supports. Taiwan has only one hospital-based informal school and eight hospitals with rotating bedside teachers. Education inside hospitals occurs mostly through voluntary teaching in informal education models. Information about special educational resources has not been widely distributed to patients and health care providers. Professional personnel in Taiwan are not well aware of the needs to establish a hospital-based school. The educational needs of children with chronic illness can be easily neglected even in an industrialized country. The establishment of policy and the enrichment of professional education on advocacy are necessary to eliminate educational inequities and benefit sick children. Copyright © 2014. Published by Elsevier B.V.

  20. A role for homeostatic drive in the perpetuation of complex chronic illness: Gulf War Illness and chronic fatigue syndrome.

    Directory of Open Access Journals (Sweden)

    Travis J A Craddock

    Full Text Available A key component in the body's stress response, the hypothalamic-pituitary-adrenal (HPA axis orchestrates changes across a broad range of major biological systems. Its dysfunction has been associated with numerous chronic diseases including Gulf War Illness (GWI and chronic fatigue syndrome (CFS. Though tightly coupled with other components of endocrine and immune function, few models of HPA function account for these interactions. Here we extend conventional models of HPA function by including feed-forward and feedback interaction with sex hormone regulation and immune response. We use this multi-axis model to explore the role of homeostatic regulation in perpetuating chronic conditions, specifically GWI and CFS. An important obstacle in building these models across regulatory systems remains the scarcity of detailed human in vivo kinetic data as its collection can present significant health risks to subjects. We circumvented this using a discrete logic representation based solely on literature of physiological and biochemical connectivity to provide a qualitative description of system behavior. This connectivity model linked molecular variables across the HPA axis, hypothalamic-pituitary-gonadal (HPG axis in men and women, as well as a simple immune network. Inclusion of these interactions produced multiple alternate homeostatic states and sexually dimorphic responses. Experimental data for endocrine-immune markers measured in male GWI subjects showed the greatest alignment with predictions of a naturally occurring alternate steady state presenting with hypercortisolism, low testosterone and a shift towards a Th1 immune response. In female CFS subjects, expression of these markers aligned with an alternate homeostatic state displaying hypocortisolism, high estradiol, and a shift towards an anti-inflammatory Th2 activation. These results support a role for homeostatic drive in perpetuating dysfunctional cortisol levels through persistent

  1. Power and resistance within the hospital's hierarchical system: the experiences of chronically ill patients.

    Science.gov (United States)

    Griscti, Odette; Aston, Megan; Warner, Grace; Martin-Misener, Ruth; McLeod, Deborah

    2017-01-01

    To explore experiences of chronically ill patients and registered nurses when they negotiate patient care in hospital settings. Specifically, we explored how social and institutional discourses shape power relations during the negotiation process. The hospital system is embedded in a hierarchical structure where the voice of the healthcare provider as expert is often given more importance than the patient. This system has been criticised as being oppressive to patients who are perceived to be lower in the hierarchy. In this study, we illustrate how the hospital's hierarchical system is not always oppressing but can also create moments of empowerment for patients. A feminist poststructuralist approach informed by the teaching of Foucault was used to explore power relations between nurses and patients when negotiating patient care in hospital settings. Eight individuals who suffered from chronic illness shared their stories about how they negotiated their care with nurses in hospital settings. The interviews were tape-recorded. Discourse analysis was used to analyse the data. Patients recounted various experiences when their voices were not heard because the current hospital system privileged the healthcare provider experts' advice over the patients' voice. The hierarchical structure of hospital supported these dynamics by privileging nurses as gatekeepers of service, by excluding the patients' input in the nursing notes and through a process of self-regulation. However, patients in this study were not passive recipients of care and used their agency creatively to resist these discourses. Nurses need to be mindful of how the hospital's hierarchical system tends to place nurses in a position of power, and how their authoritative position may positively or adversely affect the negotiation of patient care. © 2016 John Wiley & Sons Ltd.

  2. Patient Engagement in Randomized Controlled Tai Chi Clinical Trials among the Chronically Ill.

    Science.gov (United States)

    Jiang, Dongsheng; Kong, Weihong; Jiang, Joanna J

    2017-01-01

    Physicians encounter various symptom-based complaints each day. While physicians strive to support patients with chronic illnesses, evidence indicates that patients who are actively involved in their health care have better health outcomes and sometimes lowers costs. This article is to analyze how patient engagement is described when complex interventions such as Tai Chi were delivered in Randomized Controlled clinical Trials (RCTs). It reviews the dynamic patient- physician relationship in chronic illness management and to illustrate the patient engagement process, using Tai Chi as an example intervention. RCTs are considered the gold standard in clinical research. This study is a qualitative analysis of RCTs using Tai Chi as an intervention. A systematic literature search was performed to identify quality randomized controlled clinical trials that investigated the effects of Tai Chi. Selected clinical trials were classified according to research design, intervention style, patient engagement, and outcomes. Patient engagement was classified based on levels of patient participation, compliance, and selfmanagement. The chronic health conditions included in this paper are Parkinson's disease, polyneuropathy, hypertension, stroke, chronic insomnia, chronic heart failure, fibromyalgia, osteoarthritis, central obesity, depression, deconditioning in the elderly, or being pre-clinically disabled. We found that patient engagement, as a concept, was not well defined in literature. It covers a wide range of related terms, such as patient involvement, participation, shared decision- making, patient activation, adherence, compliance, and self-management. Tai Chi, as a very complex practice system, is to balance all aspects of a patient's life; however, the level of patient engagement is difficult to describe using conventional clinical trial design. To accurately illustrate the effect of a complex intervention, novel research design must explore ways to measure patient

  3. The use of information and communication technology to meet chronically ill patients' needs when living at home.

    Science.gov (United States)

    Skär, Lisa; Söderberg, Siv

    2011-01-01

    The aim of the study was to describe influences, benefits, and limitations in using information and communication technology to meet chronically ill patients' needs when living at home. The study is a descriptive, exploratory designed pilot study and the intervention was performed using an electronic communication program enabling communication between ill persons and the district nurse in real time by web cam pictures and sound. The participant used the programme once or twice a week from February to August 2008. Data were collected by means of repeated interviews and logbook notes, and were subjected to qualitative content analysis. The results showed that all participants appreciated being able to communicate regardless of time and place and their experiences of using information and communication technology revealed that it created feelings of safety and security. The information and communication technology became a tool in their communication and improved nursing care among seriously chronically ill persons living at home.

  4. Chronic Care Team Profile: a brief tool to measure the structure and function of chronic care teams in general practice.

    Science.gov (United States)

    Proudfoot, Judith G; Bubner, Tanya; Amoroso, Cheryl; Swan, Edward; Holton, Christine; Winstanley, Julie; Beilby, Justin; Harris, Mark F

    2009-08-01

    At a time when workforce shortages in general practices are leading to greater role substitution and skill-mix diversification, and the demand on general practices for chronic disease care is increasing, the structure and function of the general practice team is taking on heightened importance. To assist general practices and the organizations supporting them to assess the effectiveness of their chronic care teamworking, we developed an interview tool, the Chronic Care Team Profile (CCTP), to measure the structure and function of teams in general practice. This paper describes its properties and potential use. An initial pool of items was derived from guidelines of best-practice for chronic disease care and performance standards for general practices. The items covered staffing, skill-mix, job descriptions and roles, training, protocols and procedures within the practice. The 41-item pool was factor analysed, retained items were measured for internal consistency and the reduced instrument's face, content and construct validity were evaluated. A three-factor solution corresponding to non-general practitioner staff roles in chronic care, administrative functions and management structures provided the best fit to the data and explained 45% of the variance in the CCTP. Further analyses suggested that the CCTP is reliable, valid and has some utility. The CCTP measures aspects of the structure and function of general practices which are independent of team processes. It is associated with the job satisfaction of general practice staff and the quality of care provided to patients with chronic illnesses. As such, the CCTP offers a simple and useful tool for general practices to assess their teamworking in chronic disease care.

  5. Impact of chronic illness timing and persistence at school entry on child and parent outcomes: Australian longitudinal study.

    Science.gov (United States)

    Quach, Jon; Barnett, Tony

    2015-01-01

    To understand the prevalence and timing of child chronic illness at school entry; associations with child learning, behavior and health-related quality of life and parent mental health at ages 6 to 7, 8 to 9, and 10 to 11 years; and cumulative health care costs. Data were drawn from the first 4 waves of the Longitudinal Study of Australian Children. Children were aged 4 to 5 years at wave 1, with data collection every 2 years. Parent-reported timing of child chronic illness at school entry was categorized into 4 chronic illness groups based on changes between waves 1 and 2: none, resolving, incident and persistent. Child outcomes included: parent-reported quality of life, parent- and teacher-reported behavior, teacher-reported child learning, teacher-reported child-teacher relationship, directly assessed nonverbal and verbal cognition and parent self-reported mental health. Linear regression, adjusted for gender and socioeconomic position, was used to quantify longitudinal associations between chronic illness timing at school entry with outcomes at age 6 to 7 years, 8 to 9 years and 10 to 11 years. Of the 4983 children enrolled in the study, chronic illness data was available for 4464 children (89.6%) at both waves 1 and 2. From wave 1, 6.1% had a condition that persisted until wave 2, while 14.1% had a condition that resolved. Furthermore, 4.7% had a newly emerging condition at wave 2. Compared with the no chronic illness group, children with persistent or emerging chronic illness during school entry had the poorest outcomes (except father's mental health) at all time points, while children with resolving conditions had smaller differences. Child chronic illness at school entry is associated with poorer longitudinal child and maternal outcomes. Therefore, future research should aim to determine the risk and protective factors that contribute to the poorer child and parent outcomes experienced in this growing population. Copyright © 2015 Academic Pediatric

  6. A Conceptual Review of the Demands of chronic care and the ...

    African Journals Online (AJOL)

    USER

    1University of Zambia, School of Medicine, Department of Medical Education Development ... University of Zambia ... becoming a growing health challenge in developing ... training of the nurses in chronic care nursing can ... the Corbin and Strauss Chronic Illness Trajectory ... their own with help from teachers both in the.

  7. Health care-seeking behaviour for child illnesses among rural ...

    African Journals Online (AJOL)

    The aim of this study was to examine the health care-seeking behaviour of mothers when their children under five years suffer from common childhood illnesses such as diarrhoea, fever, cough and worms. The study was conducted in a rural community in the Limpopo Province of South Africa. The sample consisted of 100 ...

  8. [Definition of medical competence. The point of view of chronically-ill patients in the Andalusian public healthcare system (Spain)].

    Science.gov (United States)

    Prieto Rodríguez, M Ángeles; Danet Danet, Alina; Escudero Carretero, María J; Ruiz Azarola, Ainhoa; Pérez Corral, Olivia; García Toyos, Noelia

    2012-01-01

    To identify the attributes used by chronically-ill patients to describe physicians' competence in the public healthcare system in Andalucia. A total of 147 chronically-ill patients and their relatives were included in this qualitative study. Focal groups and in-depth interviews were performed in health centers and outpatient centers in Granada, Malaga, Seville, Cadiz and Cordoba between 2007 and 2008. Content analysis was carried out using Nudist Vivo. The participants defined medical competence as combining elements of technical ability and knowledge (awareness of and interest in the disease, continuity of follow-up and requesting specific tests) with interpersonal skills related to communication, information (informing, listening, trust, prompting questions) and attention (courtesy, cordiality, respect, interest and approachability). Primary care was expected to provide a close relationship, personalized treatment, information, drug prescription, and referral to specialized care. Specialized care was expected to provide an accurate diagnosis and appropriate treatment, information and follow-up. Highly valued aspects of emergency care were symptom relief, accurate diagnosis, referral to specialists and courtesy. Chronically-ill patients based their evaluation of medical competence on technical and interpersonal skills. Copyright © 2011 SESPAS. Published by Elsevier Espana. All rights reserved.

  9. Use of an electronic patient portal among the chronically ill: an observational study.

    Science.gov (United States)

    Riippa, Iiris; Linna, Miika; Rönkkö, Ilona; Kröger, Virpi

    2014-12-08

    Electronic patient portals may enhance effective interaction between the patient and the health care provider. To grasp the full potential of patient portals, health care providers need more knowledge on which patient groups prefer electronic services and how patients should be served through this channel. The objective of this study was to assess how chronically ill patients' state of health, comorbidities, and previous care are associated with their adoption and use of a patient portal. A total of 222 chronically ill patients, who were offered access to a patient portal with their health records and secure messaging with care professionals, were included in the study. Differences in the characteristics of non-users, viewers, and interactive users of the patient portal were analyzed before access to the portal. Patients' age, gender, diagnoses, levels of the relevant physiological measurements, health care contacts, and received physiological measurements were collected from the care provider's electronic health record. In addition, patient-reported health and patient activation were assessed by a survey. Despite the broad range of measures used to indicate the patients' state of health, the portal user groups differed only in their recorded diagnosis for hypertension, which was most common in the non-user group. However, there were significant differences in the amount of care received during the year before access to the portal. The non-user group had more nurse visits and more measurements of relevant physiological outcomes than viewers and interactive users. They also had fewer referrals to specialized care during the year before access to the portal than the two other groups. The viewers and the interactive users differed from each other significantly in the number of nurse calls received, the interactive users having more calls than the viewers. No significant differences in age, gender, or patient activation were detected between the user groups. Previous

  10. Growing up with a chronic illness: social success, educational/vocational distress.

    Science.gov (United States)

    Maslow, Gary R; Haydon, Abigail; McRee, Annie-Laurie; Ford, Carol A; Halpern, Carolyn T

    2011-08-01

    We compared adult educational, vocational, and social outcomes among young adults with and without childhood-onset chronic illness in a nationally representative U.S. sample. We used data from Wave IV (2008) of the National Longitudinal Study of Adolescent Health. We compared respondents who reported childhood-onset cancer, heart disease, diabetes, or epilepsy with young adults without these chronic illnesses in terms of marriage, having children, living with parents, romantic relationship quality, educational attainment, income, and employment. Multivariate models controlled for sociodemographic factors and adult-onset chronic illness. As compared with those without childhood chronic illness, respondents with childhood chronic illness had similar odds of marriage (odds ratios [OR] = .89, 95% CI: .65-1.24), having children (OR = .99, 95% CI: .70-1.42), and living with parents (OR = 1.49, 95% CI .94-2.33), and similar reports of romantic relationship quality. However, the chronic illness group had lower odds of graduating college (OR = .49, 95% CI: .31-.78) and being employed (OR = .56, 95% CI: .39-.80), and higher odds of receiving public assistance (OR = 2.13, 95% CI: 1.39-3.25), and lower mean income. Young adults growing up with chronic illness succeed socially, but are at increased risk of poorer educational and vocational outcomes. Copyright © 2011 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.

  11. The relationships between depression and other outcomes of chronic illness caregiving

    Directory of Open Access Journals (Sweden)

    Jirovec Mary M

    2005-02-01

    Full Text Available Abstract Background Many caregivers with chronically ill relatives suffer from depression. However, the relationship of depression to other outcomes of chronic caregiving remains unclear. This study tested a hypothesized model which proposed that hours of care, stressful life events, social support, age and gender would predict caregivers' outcomes through perceived caregiver stress. Depression was expected to mediate the relationship between perceived stress and outcomes of chronic caregiving (physical function, self-esteem, and marital satisfaction. Methods The sample for this secondary data analysis consisted of 236 and 271 subjects from the Americans' Changing Lives, Wave 1, 1986, and Wave 2, 1989, data sets. Measures were constructed from the original study. Structural equation modeling was used to test the hypothesized model, and an exploratory structural modeling method, specification search, was used to develop a data-derived model. Cross-validation was used to verify the paths among variables. Results Hours of care, age, and gender predicted caregivers' outcomes directly or through perceived caregiver stress (p Conclusion Depression predicted psychological outcomes. Whether depression predicts physical health outcomes needs to be further explored.

  12. Health care's ills: A Catholic diagnosis

    Science.gov (United States)

    Sibley, Angus

    2016-01-01

    Catholic teaching is emphatic on the need to “guarantee adequate [health] care to all,” as Pope Benedict XVI has stated. America has been slower than other advanced countries in progressing towards this goal. Reasons for this delay can be found in certain attitudes that have long been present in American culture, and have been reinforced by the wave of libertarianism (free-market ideology) that swept the world in the late twentieth century. Catholic theology and social/economic teaching can help us understand the flaws in these attitudes, which involve fundamental philosophical and theological principles, but which are far from academic, since they have serious and very practical consequences. In the light of Catholic teaching, we can look towards a sounder understanding of healthcare needs and effective ways of meeting them. Lay Summary: This article argues that access to healthcare, at least up to the level of basic necessity, falls under the heading of distributive justice. It is a human right owed by the community to each of its citizens. And since rights entail obligations, this right entails an obligation upon each citizen to contribute, as circumstances permit, to the costs, which need to be shared equitably; they cannot be met simply by each individual providing solely for oneself. Also discussed are the problems of excessive costs in healthcare administration and in pharmacological research, as well as harmful tendencies in private-sector firms to over-reward top management and to target maximum (rather than adequate) profits. PMID:28392590

  13. Self-esteem of children and adolescents with chronic illness: a meta-analysis.

    Science.gov (United States)

    Pinquart, M

    2013-03-01

    Chronic illness may be a risk factor for low self-esteem; however, previous meta-analyses are inconclusive whether children with a chronic illness have lower self-esteem than their healthy peers. The goal of the present study was to summarize available research in order to compare the self-esteem of children and adolescents with a chronic illness with that of healthy children. Random-effects meta-analysis was used to integrate the results of 621 empirical studies that compare levels of self-esteem of children with a chronic physical illness with healthy peers or general test norms. Studies were identified via the electronic databases Adolesc, Embase, Google Scholar, MEDLINE, PSNYDEX, PSYCINFO, and cross-referencing. Children with chronic illnesses have lower self-esteem than healthy peers or test norms (g = -0.18 standard deviation units). The lowest levels of self-esteem were observed in children with chronic fatigue syndrome and chronic headaches. Lower levels of self-esteem in children with a chronic illness were found in girls than in boys, in adolescents than in children, in children from developing or threshold countries, when results were collected from observer ratings rather than child reports, in studies published in the 1990s, and when children with chronic illnesses were directly compared with healthy children instead of test norms. Paediatricians, parents, and teachers should promote experiences of success and positive peer-relations, which are important sources of self-esteem. In addition, psychosocial interventions for children with chronic illnesses should be offered for children with reduced self-esteem. © 2012 Blackwell Publishing Ltd.

  14. Shamanism: Indications and Use by Older Hmong Americans with Chronic Illness

    Directory of Open Access Journals (Sweden)

    Linda A. Gerdner

    2012-01-01

    Full Text Available This article reports qualitative interviews from an ethnographic study that explored in part, the health seeking behaviors of and for older Hmong Americans with chronic illness. The study occurred over a 36-month period in the St. Paul / Minneapolis area of Minnesota. The majority of interviews were conducted in the Hmong language and lasted approximately three hours. Participants included 35 older Hmong Americans living independently with chronic illness. Themajority of these older adults were female (n=25, 80% with a mean age of 78.43 years. Interviews also included 33 family members (n=25 female,75.75% with a mean age of 75.75 years, who provided a minimum of eight hours of in-home care for an older Hmong American with chronic illness. Due to the significant role of shamans in the spiritual well-being of older adults, three shamans (two male, and one female were also interviewed. All (mean age 83, range65-99 had been “chosen” to become a shaman while living in Laos and had resided in the United States an average of 4 years 5 months (range: 1 month to 13 years. All shamans reported havingan active practice, with comments such as “I have so many [patients] I do not count.” More specifically, one shaman stated that he performed 20 to 40 healing ceremonies per year. One shaman explained his role by stating “I heal the weak and the lost spirit.” The majority of older Hmong Americans (74.29% and family caregivers (57.58 had retained the spiritual beliefs of animism and ancestor worship. Findings report that 18 (51.43% older Hmong Americanscompared to 21 (63.3% family caregivers sought the services of both a physician and a shaman for treatment of the older person’s chronic illness. Fourteen (40% older Hmong Americans compared to ten (30.30% family caregivers sought the services of a physician alone. Only 3 (8.57% older Hmong Americans compared to 2 (6.06% caregivers consulted the services of a shaman alone. Many older adults and

  15. [Collaborative somatic care for patients with severe mental illness].

    Science.gov (United States)

    van Hasselt, Fenneke M; Oud, Marian J T; Loonen, Anton J M

    2015-01-01

    Patients with severe mental illness have an accumulation of risk factors for physical diseases like cardiovascular diseases, metabolic syndrome, diabetes mellitus and COPD. These patients receive suboptimal care in the Netherlands. A major barrier to optimal care is the lack of collaboration between mental health professionals and general practitioners. An improvement could be made if all medical professionals actively supported these high-risk patients in taking adequate care of their health needs. This improvement can only be made if general practitioners and mental health professionals collaborate in a timely and structured manner.

  16. Cost-of-illness studies in chronic ulcers: a systematic review.

    Science.gov (United States)

    Chan, B; Cadarette, S; Wodchis, W; Wong, J; Mittmann, N; Krahn, M

    2017-04-01

    To systematically review the published academic literature on the cost of chronic ulcers. A literature search was conducted in MEDLINE, EMBASE, HealthSTAR, Econlit and CINAHL up to 12 May 2016 to identify potential studies for review. Cost search terms were based on validated algorithms. Clinical search terms were based on recent Cochrane reviews of interventions for chronic ulcers. Titles and abstracts were screened by two reviewers to determine eligibility for full text review. Study characteristics were summarised. The quality of reporting was evaluated using a modified cost-of-illness checklist. Mean costs were adjusted and inflated to 2015 $US and presented for different durations and perspectives. Of 2267 studies identified, 36 were eligible and included in the systematic review. Most studies presented results from the health-care public payer or hospital perspective. Many studies included hospital costs in the analysis and only reported total costs without presenting condition-specific attributable costs. The mean cost of chronic ulcers ranged from $1000 per year for patient out of pocket costs to $30,000 per episode from the health-care public payer perspective. Mean one year cost from a health-care public payer perspective was $44,200 for diabetic foot ulcer (DFU), $15,400 for pressure ulcer (PU) and $11,000 for leg ulcer (LU). There was large variability in study methods, perspectives, cost components and jurisdictions, making interpretation of costs difficult. Nevertheless, it appears that the cost for the treatment of chronic ulcers is substantial and greater attention needs to be made for preventive measures.

  17. Longitudinal Model Predicting Self-Concept in Pediatric Chronic Illness.

    Science.gov (United States)

    Emerson, Natacha D; Morrell, Holly E R; Neece, Cameron; Tapanes, Daniel; Distelberg, Brian

    2018-04-16

    Although self-concept has been identified as salient to the psychosocial adjustment of adolescents dealing with a chronic illness (CI), little research has focused on its predictors it. Given that depression and parent-child attachment have been linked to self-concept in the population at large, the goal of this study was to evaluate these relationships longitudinally in a sample of adolescents with CI. Using participant data from the Mastering Each New Direction (MEND) program, a 3-month psychosocial, family based intensive outpatient program for adolescents with CI, we employed multilevel modeling to test longitudinal changes in self-concept, as predicted by depressive symptoms and parent-child attachment, in a sample of 50 youths (M age  = 14.56, SD age  = 1.82) participating in MEND. Both "time spent in the program" and decreases in depressive symptoms were associated with increases in self-concept over time. Higher baseline levels of avoidant attachment to both mother and father were also associated with greater initial levels of self-concept. Targeting depressive symptoms and supporting adaptive changes in attachment may be key to promoting a healthy self-concept in pediatric CI populations. The association between avoidant attachment and higher baseline self-concept scores may reflect differences in participants' autonomy, self-confidence, or depression. Limitations of the study include variability in the amount of time spent in the program, attrition in final time point measures, and the inability to fully examine and model all potential covariates due to a small sample size (e.g. power). © 2018 Family Process Institute.

  18. Blood Biomarkers of Chronic Inflammation in Gulf War Illness.

    Directory of Open Access Journals (Sweden)

    Gerhard J Johnson

    Full Text Available More than twenty years following the end of the 1990-1991 Gulf War it is estimated that approximately 300,000 veterans of this conflict suffer from an unexplained chronic, multi-system disorder known as Gulf War Illness (GWI. The etiology of GWI may be exposure to chemical toxins, but it remains only partially defined, and its case definition is based only on symptoms. Objective criteria for the diagnosis of GWI are urgently needed for diagnosis and therapeutic research.This study was designed to determine if blood biomarkers could provide objective criteria to assist diagnosis of GWI.A surveillance study of 85 Gulf War Veteran volunteers identified from the Department of Veterans Affairs Minnesota Gulf War registry was performed. All subjects were deployed to the Gulf War. Fifty seven subjects had GWI defined by CDC criteria, and 28 did not have symptomatic criteria for a diagnosis of GWI. Statistical analyses were performed on peripheral blood counts and assays of 61 plasma proteins using the Mann-Whitney rank sum test to compare biomarker distributions and stepwise logistic regression to formulate a diagnostic model.Lymphocyte, monocyte, neutrophil, and platelet counts were higher in GWI subjects. Six serum proteins associated with inflammation were significantly different in GWI subjects. A diagnostic model of three biomarkers-lymphocytes, monocytes, and C reactive protein-had a predicted probability of 90% (CI 76-90% for diagnosing GWI when the probability of having GWI was above 70%.The results of the current study indicate that inflammation is a component of the pathobiology of GWI. Analysis of the data resulted in a model utilizing three readily measurable biomarkers that appears to significantly augment the symptom-based case definition of GWI. These new observations are highly relevant to the diagnosis of GWI, and to therapeutic trials.

  19. Do illness perceptions of people with chronic low back pain differ from people without chronic low back pain?

    NARCIS (Netherlands)

    van Wilgen, C. Paul; van Ittersum, Miriam W.; Kaptein, Ad A.

    Objectives To determine why some people develop chronic low back pain, and whether illness perceptions are an important risk factor in the transition from acute to chronic low back pain. Design Cross-sectional study. Participants Four hundred and two members of the general Dutch population, with and

  20. Chronic and integrated care in Catalonia

    Science.gov (United States)

    Contel, Juan Carlos; Ledesma, Albert; Blay, Carles; Mestre, Assumpció González; Cabezas, Carmen; Puigdollers, Montse; Zara, Corine; Amil, Paloma; Sarquella, Ester; Constante, Carles

    2015-01-01

    Introduction The Chronicity Prevention and Care Programme set up by the Health Plan for Catalonia 2011–2015 has been an outstanding and excellent opportunity to create a new integrated care model in Catalonia. People with chronic conditions require major changes and transformation within the current health and social system. The new and gradual context of ageing, increase in the number of chronic diseases and the current fragmented system requires this transformation to be implemented. Method The Chronicity Prevention and Care Programme aims to implement actions which drive the current system towards a new scenario where organisations and professionals must work collaboratively. New tools should facilitate this new context- or work-like integrated health information systems, an integrative financing and commissioning scheme and provide a new approach to virtual care by substituting traditional face-to-face care with transfer and shared responsibilities between patients, citizens and health care professionals. Results It has been observed some impact reducing the rate of emergency admissions and readmission related to chronic conditions and better outcome related to better chronic disease control. Some initiative like the Catalan Expert Patient Program has obtained good results and an appropriate service utilization. Discussion The implementation of a Chronic Care Program show good results but it is expected that the new integrated health and social care agenda could provoke a real change and transformation. Some of the results related to better health outcomes and a decrease in avoidable hospital admissions related to chronic conditions confirm we are on the right track to make our health and social system more sustainable for the decades to come. PMID:26150763

  1. Chronic and integrated care in Catalonia

    Directory of Open Access Journals (Sweden)

    Juan Carlos Contel

    2015-06-01

    Full Text Available Introduction: The Chronicity Prevention and Care Programme set up by the Health Plan for Catalonia 2011–2015 has been an outstanding and excellent opportunity to create a new integrated care model in Catalonia. People with chronic conditions require major changes and transformation within the current health and social system. The new and gradual context of ageing, increase in the number of chronic diseases and the current fragmented system requires this transformation to be implemented. Method: The Chronicity Prevention and Care Programme aims to implement actions which drive the current system towards a new scenario where organisations and professionals must work collaboratively. New tools should facilitate this new context- or work-like integrated health information systems, an integrative financing and commissioning scheme and provide a new approach to virtual care by substituting traditional face-to-face care with transfer and shared responsibilities between patients, citizens and health care professionals. Results: It has been observed some impact reducing the rate of emergency admissions and readmission related to chronic conditions and better outcome related to better chronic disease control. Some initiative like the Catalan Expert Patient Program has obtained good results and an appropriate service utilization. Discussion: The implementation of a Chronic Care Program show good results but it is expected that the new integrated health and social care agenda could provoke a real change and transformation. Some of the results related to better health outcomes and a decrease in avoidable hospital admissions related to chronic conditions confirm we are on the right track to make our health and social system more sustainable for the decades to come.

  2. Consequences of caring for a child with a chronic disease: Employment and leisure time of parents

    NARCIS (Netherlands)

    Hatzmann, Janneke; Peek, Niels; Heymans, Hugo; Maurice-Stam, Heleen; Grootenhuis, Martha

    2014-01-01

    Chronically ill children require several hours of additional care per day compared to healthy children. As parents provide most of this care, they have to incorporate it into their daily schedule, which implies a reduction in time for other activities. The study aimed to assess the effect of having

  3. Social networks, social capital and chronic illness self-management: a realist review.

    Science.gov (United States)

    Vassilev, Ivaylo; Rogers, Anne; Sanders, Caroline; Kennedy, Anne; Blickem, Christian; Protheroe, Joanne; Bower, Peter; Kirk, Sue; Chew-Graham, Carolyn; Morris, Rebecca

    2011-03-01

    Existing literature on the design of interventions and health policy about self-management have tended to focus on individual-centred definitions of self-care and there is growing recognition of the need to extend consideration beyond individual factors, which determine self-care, to examine wider influences such as the health service, the family and the wider social context. To explore the theoretical and empirical links between social networks, social capital and the self-care practices associated with chronic illness work and management in the context of people's everyday lives. A realist review method was used to search and appraise relevant quantitative and qualitative literature. The review findings indicate that social networks play an important part in the management of long-term conditions. We found that social networks tend to be defined narrowly and are primarily used as a way of acknowledging the significance of context. There is insufficient discussion in the literature of the specific types of networks that support or undermine self-care as well as an understanding of the processes involved. This necessitates shifting the emphasis of self-care towards community and network-centred approaches, which may also prove more appropriate for engaging people in socially and economically deprived contexts.

  4. Hospital-based school for children with chronic illness in Taiwan

    Directory of Open Access Journals (Sweden)

    Der-Fang Chen

    2015-10-01

    Conclusion: The educational needs of children with chronic illness can be easily neglected even in an industrialized country. The establishment of policy and the enrichment of professional education on advocacy are necessary to eliminate educational inequities and benefit sick children.

  5. Psychosocial adjustment of children with chronic illness: an evaluation of three models.

    Science.gov (United States)

    Gartstein, M A; Short, A D; Vannatta, K; Noll, R B

    1999-06-01

    This study was designed to assess social, emotional, and behavioral functioning of children with chronic illness and to evaluate three models addressing the impact of chronic illness on psychosocial functioning: discrete disease, noncategorical, and mixed. Families of children with cancer, sickle cell disease, hemophilia, and juvenile rheumatoid arthritis participated, along with families of classroom comparison peers without a chronic illness who had the closest date of birth and were of the same race and gender (COMPs). Mothers, fathers, and children provided information regarding current functioning of the child with chronic illness or the COMP child. Child Behavior Checklist and Children's Depression Inventory scores were examined. Results provided support for the noncategorical model. Thus, the mixed model evaluated in this study requires modifications before its effectiveness as a classification system can be demonstrated.

  6. Promoting Healthy Work for Employees with Chronic Illness : Analysis of Models of Good Practice

    NARCIS (Netherlands)

    Kristin ten Have; Anja Dijkman; Dr. Rob Gründemann; Cees Wevers

    2012-01-01

    The ENWHP project and campaign Promoting Healthy Work for Employees with Chronic Illness (PH Work) should contribute towards the implementation of effective workplace health practices within corporate policies of enterprises in Europe. More specific the project should stimulate activities and

  7. Say 'trouble's gone': chronic illness and employability in job training programmes.

    Science.gov (United States)

    Tsui, Emma K

    2013-01-01

    The concept of biographical disruption has unique relevance for socioeconomically disadvantaged groups who participate in entry-level job training programmes. In these programmes trainees often suffer from various forms of chronic illness and must arrange these illnesses into a picture of employability. In this article I use ethnographic data and narrative analysis to examine closely two trainees' illness-related experiences, expressions and talk, and find that their ability to present their illnesses in ways that are consistent with programmatic goals is strongly influenced by family support, responsibilities and roles, as well as particular aspects of illness, like the interpretability of symptoms. I also find that the concept of biographical disruption has a curious traction in the world of job training, particularly among job training programme staff who would like to see trainees mobilise a variety of resources to help manage their illness. However, for trainees, many of whom have lived with chronic illness for years, the concept of biographical disruption may be more limited as a tool for understanding the experiences of illness. A more meaningful disruptive force in the lives of trainees appears to be the programme itself and the strategies for dealing with illness that programme staff may extend. © 2012 The Author. Sociology of Health & Illness © 2012 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd.

  8. Suicidal Behaviour Among Adolescents and Young Adults with Self-Reported Chronic Illness.

    Science.gov (United States)

    Ferro, Mark A; Rhodes, Anne E; Kimber, Melissa; Duncan, Laura; Boyle, Michael H; Georgiades, Katholiki; Gonzalez, Andrea; MacMillan, Harriet L

    2017-12-01

    The aims of this study were to estimate the: (1) 12-mo prevalence of suicidal thoughts, plans, and attempts in a population sample of adolescents and young adults with and without chronic illness; (2) associations among chronic illness and suicidal thoughts and behaviour (STB); and, (3) moderating roles of mood and substance use disorder on this association. Individuals were aged 15 to 30 y ( n = 5,248) from the Canadian Community Health Survey-Mental Health. Twelve-month STB and psychiatric disorder were measured using the World Health Organization Composite International Diagnostic Interview 3.0. Multinomial logistic regression examined associations between chronic illness and STB, adjusting for relevant sociodemographic and health characteristics. Product term interactions among chronic illness, mood, and substance use disorders were included in the regression models to examine potential moderating effects. Prevalence of suicidal thoughts, plans, and attempts was higher in individuals with chronic illness ( P < 0.01 for all). After adjustment, chronic illness increased the odds for suicidal thoughts [OR = 1.28 (1.01 to 1.64)], plans [OR = 2.34 (1.22 to 4.39)], and attempts [OR = 4.63 (1.52 to 14.34)]. In the presence v. absence of a mood disorder, the odds for suicidal thoughts were higher among individuals with chronic illness [OR = 1.89 (1.06 to 5.28)]. Suicidal thoughts and behaviours are common among adolescents and young adults with chronic illness, particularly among those with comorbid mood disorders. Health professionals should routinely ask about STB during assessments of their adolescent and young adult patients.

  9. Perceptions of chronically ill and healthy consumers about electronic personal health records: a comparative empirical investigation

    OpenAIRE

    Cocosila, Mihail; Archer, Norm

    2014-01-01

    Objective To develop a model of consumer perceptions of electronic personal health records (PHRs) and validate it in a comparative study between consumers who report having a chronic illness and those who report being well. Materials and methods A model of PHR use motivators and barriers was built and tested through a national survey across Canada. Data were collected from 800 individuals, 18 years or older. Half reported having a chronic illness or disability and half reported being well. An...

  10. An exploratory study of the personal health records adoption model in the older adult with chronic illness

    Directory of Open Access Journals (Sweden)

    Melanie D Logue

    2013-05-01

    Full Text Available Background Despite international efforts moving toward integrated care using health information technologies and the potential of electronic PHRs to help us better coordinate patient-centered care, PHR adoption in the United States remains low among patients who have been offered free access to them from private-sector companies. If older adult stand to benefit from the use of PHRs for its usefulness in self-managing chronic illness, why have they not been more readily adopted? Since the chronically ill older adult has unique circumstances that impact their decision to participate in self-directed care, a theoretical framework to help understand factors that influence the adoption of PHRs is important. Here we describe the results of an exploratory study that provided an initial test of such a framework.Methods The study used a descriptive survey methodology with 38 older adults. The survey questionnaire asked about the personal barriers and facilitators associated with personal health record adoption and included items measuring each of the PHRAM’s four interacting factors (environmental factors, personal factors, technology factors, and self-management, and the resulting behavioural outcome.Results Younger seniors had a more positive attitude toward computers, knew what health resources were available on the internet, agreed that they had the resources in place to use PHRs, and would be more influenced by a family member than a healthcare provider to use them. Conversely, older seniors reported less confidence in their ability to use Internet-based PHRs and did not perceive that they had the resources in place to use them.Conclusions The results of this study indicated that personal, environmental, technology, chronic illness, and behavioral factors operated concurrently as personal barriers and/or facilitators to the adoption of PHRs among the older adult with chronic illness. These factors cannot be isolated because the person commonly

  11. Illness Perception and Information Behaviour of Patients with Rare Chronic Diseases

    Science.gov (United States)

    Katavic, Snježana Stanarevic; Tanackovic, Sanjica Faletar; Badurina, Boris

    2016-01-01

    Introduction: This study examined possible correlations between health information behaviour and illness perception among patients with rare chronic diseases. Illness perception is related to coping strategies used by patients, and some health information behaviour practices may be associated with better coping and more positive perception of…

  12. Cognitive Treatment of Illness Perceptions in Patients With Chronic Low Back Pain : A Randomized Controlled Trial

    NARCIS (Netherlands)

    Siemonsma, Petra C.; Stuive, Ilse; Roorda, Leo D.; Vollebregt, Joke A.; Walker, Marion F.; Lankhorst, Gustaaf J.; Lettinga, Ant T.

    Background. Illness perceptions have been shown to predict patient activities. Therefore, studies of the effectiveness of a targeted illness-perception intervention on chronic nonspecific low back pain (CLBP) are needed. Objective. The purpose of this study was to compare the effectiveness of

  13. A Therapeutic Approach for Treating Chronic Illness and Disability among College Students

    Science.gov (United States)

    Haemmelmann, Katie L.; McClain, Mary-Catherine

    2013-01-01

    Research in chronic illness and disability (CID) in college students has demonstrated that students with disabilities encounter more difficulties psychosocially than their nondisabled counterparts. Subsequently, these difficulties impact the ability of these students to successfully adapt. Using the illness intrusiveness model in combination with…

  14. Paradigms for investigating rehabilitation and adaptation to childhood disability and chronic illness.

    Science.gov (United States)

    Harper, D C

    1991-10-01

    Significant research perspectives in investigating chronic illness and disability are presented. Historical research conceptualizations in childhood disability are reviewed and newer contexts for evaluating disorder are presented. Future research in childhood illness and disability is directed toward basing investigations on theoretical models and promoting prospective longitudinal programs. Pediatric psychologists are encouraged to consider more collaborative efforts to move the field forward systematically.

  15. Dissimilary in patients' and spouses' representations of chronic illness: exploration of relations to patient adaptation.

    NARCIS (Netherlands)

    Heijmans, M.; Ridder, D. de; Bensing, J.

    1999-01-01

    In this cross-sectional study, the illness representations of patients suffering from Chronic Fatigue Syndrome (n=49) and Addison's Disease (n=52) and those of their spouses were compared. Couples generally held similar views with regard to the dimensions of illness identity and cause but disagreed

  16. How do high cost-sharing policies for physician care affect total care costs among people with chronic disease?

    Science.gov (United States)

    Xin, Haichang; Harman, Jeffrey S; Yang, Zhou

    2014-01-01

    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.

  17. Integrating mental health care into residential homes for the elderly: an analysis of six Dutch programs for older people with severe and persistent mental illness

    NARCIS (Netherlands)

    Depla, Marja F. I. A.; Pols, Jeannette; de Lange, Jacomine; Smits, Carolien H. M.; de Graaf, Ron; Heeren, Thea J.

    2003-01-01

    Integrating mental health care into residential homes for the elderly is a potentially effective model to address the complex care needs of older chronically mentally ill people. Because no research was available on the implementation of such integrated care in practice, six programs already

  18. Psychosocial Adaptation to Chronic Illness and Disability: A Virtue Based Model.

    Science.gov (United States)

    Kim, Jeong Han; McMahon, Brian T; Hawley, Carolyn; Brickham, Dana; Gonzalez, Rene; Lee, Dong-Hun

    2016-03-01

    Psychosocial adaptation to chronic illness and disability (CID) is an area of study where a positive psychology perspective, especially the study of virtues and character strengths, can be implemented within the rehabilitation framework. A carefully developed theory to guide future interdisciplinary research is now timely. A traditional literature review between philosophy and rehabilitation psychology was conducted in order to develop a virtue-based psychosocial adaptation theory, merging important perspectives from the fields of rehabilitation and positive psychology. The virtue-based psychosocial adaptation model (V-PAM) to CID is proposed in the present study. The model involves five qualities or constructs: courage, practical wisdom, commitment to action, integrity and emotional transcendence. Each of these components of virtue contributes to an understanding of psychosocial adaptation. The present study addresses the implications and applications of V-PAM that will advance this understanding.

  19. Complete mental health in adult siblings of those with a chronic illness or disability.

    Science.gov (United States)

    Hallion, Madeleine; Taylor, Amanda; Roberts, Rachel

    2018-02-01

    Sibling relationships have lifelong significance and childhood chronic illness and disability can have considerable impacts on healthy siblings, influencing development into adulthood. Research has not yet assessed well-being in this population using measures of both mental health and mental illness. Thus, this study assessed well-being in a comprehensive manner using the complete mental health (CMH) model. Participants (N = 144) included both adult siblings of those with chronic illness or disability and adults with healthy siblings. Measures of positive social, psychological and emotional well-being were used to assess mental health and a measure of depression, anxiety, and stress was used to assess mental illness. A high proportion of participants, both with and without siblings with a chronic illness or disability, were experiencing symptoms of mental illness, accompanied by high wellbeing. This indicates that many participants fit into the struggling category of the CMH model. The present research highlights the need for early intervention services to ensure that siblings of those with a chronic illness or disability are well supported in developing strengths, as well as managing difficulties. Results also indicate that targeting students in mental health promotion is important to encourage participation in services. Implications for rehabilitation Siblings of those with a chronic illness or disability need to be included in assessments in order to understand the experience of the family unit. It is important for families and clinicians to be aware of the needs of healthy siblings and encourage them to interact with support services in order to maximise and maintain well-being. Skills-based support could be beneficial, particularly for providing caregivers with strategies to meet the needs of both their child with a chronic illness or disability and their healthy children.

  20. How optimism contributes to the adaptation of chronic illness. A prospective study into the enduring effects of optimism on adaptation moderated by the controllability of chronic illness

    NARCIS (Netherlands)

    Fournier, M.; Ridder, D.T.D. de; Bensing, J.

    2002-01-01

    The aim of this study was to investigate the impact of optimistic beliefs on coping and adaptation over 6 and 12 months of chronic illness, and whether the adaptiveness of optimistic beliefs was moderated by the controllability of disease. In addition, we examined whether coping strategies

  1. A review of factors associated with mental health in siblings of children with chronic illness.

    Science.gov (United States)

    Incledon, Emily; Williams, Lauren; Hazell, Trevor; Heard, Todd R; Flowers, Alexandra; Hiscock, Harriet

    2015-06-01

    This article reviews the literature on modifiable factors associated with mental health in siblings of children with chronic illness. Three clinical databases were searched. A total of 17 studies met the inclusion criteria. Several key themes emerged from the review. Better sibling mental health was associated with camp attendance, perceived parent/peer support, illness education and enhancing control through cognitive coping strategies and routine. Parental and sibling psychoeducation interventions and social support may enhance children's mental health when their sibling has a chronic illness. © The Author(s) 2013.

  2. Families of Children with Chronic Illness and the Relational Family Model

    Directory of Open Access Journals (Sweden)

    Tanja Pate

    2016-09-01

    Full Text Available Families of children with chronic illness experience persistent stress. Facing the diagnosis and learning how to cope with it is a stressful experience not only for the child but also for the parents and for the whole family. The illness, with its unpredictability and treatment, disturbs their daily routine and threatens the whole family system. Parental involvement in the child’s disease management and their emotional support are crucial for effective coping and adaptation to the child’s chronic illness. The aim of this article is to present the importance of the parental role in these families through theoretical findings of the relational family model.

  3. The stress of being chronically ill: from disease-specific to task-specific aspects.

    NARCIS (Netherlands)

    Heijmans, M.; Rijken, M.; Foets, M.; Ridder, D. de; Schreurs, K.; Bensing, J.

    2004-01-01

    The assumption that disease-related stressors are exclusive for particular diagnoses characterizes many studies of chronically ill patients. In this study the perceptions of 1305 patients from 10 different chronic disease categories were compared with respect to a number of important stressors.

  4. The stress of being chronically ill: from disease-specific to task-specific aspects

    NARCIS (Netherlands)

    Heijmans, M.; Rijken, M.; Foets, M.; Ridder, D.T.D. de; Schreurs, K.; Bensing, J.

    The assumption that disease-related stressors are exclusive for particular diagnoses characterizes many studies of chronically ill patients. In this study the perceptions of 1305 patients from 10 different chronic disease categories were compared with respect to a number of important stressors.

  5. Facilitating job retention for chronically ill employees: perspectives of line managers and human resource managers

    NARCIS (Netherlands)

    Haafkens, J.A.; Kopnina, H.; Meerman, M.G.M.; van Dijk, F.J.H.

    2011-01-01

    Background: Chronic diseases are a leading contributor to work disability and job loss in Europe. Recent EU policies aim to improve job retention among chronically ill employees. Disability and occupational health researchers argue that this requires a coordinated and pro-active approach at the

  6. Facilitating job retention for chronically ill employees: perspectives of line managers and human resource managers

    NARCIS (Netherlands)

    Haafkens, Joke A.; Kopnina, Helen; Meerman, Martha G. M.; van Dijk, Frank J. H.

    2011-01-01

    Chronic diseases are a leading contributor to work disability and job loss in Europe. Recent EU policies aim to improve job retention among chronically ill employees. Disability and occupational health researchers argue that this requires a coordinated and pro-active approach at the workplace by

  7. Theory of planned behavior and adherence in chronic illness: a meta-analysis

    NARCIS (Netherlands)

    Rich, A.; Brandes, K.; Mullan, B.; Hagger, M.S.

    2015-01-01

    Social-cognitive models such as the theory of planned behavior have demonstrated efficacy in predicting behavior, but few studies have examined the theory as a predictor of treatment adherence in chronic illness. We tested the efficacy of the theory for predicting adherence to treatment in chronic

  8. Chronic Illness as a Source of Happiness: Paradox or perfectly normal?

    Directory of Open Access Journals (Sweden)

    S. Hoppe

    2013-11-01

    Full Text Available In this paper I analyse the relation between happiness and chronic illness from the perspective of medical anthropology and disability studies. By looking at the disability paradox I deconstruct society’s view of people with a disability. I argue that the disability paradox is problematic as it ignores the views of people with a disability. Moreover, such a paradox reinforces the idea that living with a chronic illness or disability is a devastating experience and that happiness and disability are mutally exclusive realities. Based on empiric examples of people who suffer from Multiple Sclerosis I demonstrate that people with a chronic illness can experience happiness in spite of illness, but also as a consequence of it. 

  9. Parenting stress among caregivers of children with chronic illness: a systematic review.

    Science.gov (United States)

    Cousino, Melissa K; Hazen, Rebecca A

    2013-09-01

    To critically review, analyze, and synthesize the literature on parenting stress among caregivers of children with asthma, cancer, cystic fibrosis, diabetes, epilepsy, juvenile rheumatoid arthritis, and/or sickle cell disease. Method PsychInfo, MEDLINE, and Cumulative Index to Nursing and Allied Health Literature were searched according to inclusion criteria. Meta-analysis of 13 studies and qualitative analysis of 96 studies was conducted. Results Caregivers of children with chronic illness reported significantly greater general parenting stress than caregivers of healthy children (d = .40; p = ≤.0001). Qualitative analysis revealed that greater general parenting stress was associated with greater parental responsibility for treatment management and was unrelated to illness duration and severity across illness populations. Greater parenting stress was associated with poorer psychological adjustment in caregivers and children with chronic illness. Conclusion Parenting stress is an important target for future intervention. General and illness-specific measures of parenting stress should be used in future studies.

  10. Physical health care monitoring for people with serious mental illness.

    Science.gov (United States)

    Tosh, Graeme; Clifton, Andrew V; Xia, Jun; White, Margueritte M

    2014-01-17

    Current guidance suggests that we should monitor the physical health of people with serious mental illness, and there has been a significant financial investment over recent years to provide this. To assess the effectiveness of physical health monitoring, compared with standard care for people with serious mental illness. We searched the Cochrane Schizophrenia Group Trials Register (October 2009, update in October 2012), which is based on regular searches of CINAHL, EMBASE, MEDLINE and PsycINFO. All randomised clinical trials focusing on physical health monitoring versus standard care, or comparing i) self monitoring versus monitoring by a healthcare professional; ii) simple versus complex monitoring; iii) specific versus non-specific checks; iv) once only versus regular checks; or v) different guidance materials. Initially, review authors (GT, AC, SM) independently screened the search results and identified three studies as possibly fulfilling the review's criteria. On examination, however, all three were subsequently excluded. Forty-two additional citations were identified in October 2012 and screened by two review authors (JX and MW), 11 of which underwent full screening. No relevant randomised trials which assess the effectiveness of physical health monitoring in people with serious mental illness have been completed. We identified one ongoing study. There is still no evidence from randomised trials to support or refute current guidance and practice. Guidance and practice are based on expert consensus, clinical experience and good intentions rather than high quality evidence.

  11. A meta-ethnographic synthesis on phenomenographic studies of patients’ experiences of chronic illness

    Directory of Open Access Journals (Sweden)

    Marta Röing

    2015-02-01

    Full Text Available Phenomenography is a qualitative research approach developed within an educational framework, focusing on the qualitative experience of learning. It is also being used, to a lesser degree, in healthcare research. In the present study, we conducted a meta-ethnographic synthesis of phenomenographic studies on chronic illness, in order to give a broader perspective of how chronic illness can be experienced. Our aim was not to describe patients’ various individual experiences of illness, but instead to identify the different ways chronic illness can be experienced by patients. Our synthesis and phenomenographic interpretation of 12 selected articles found that patients’ experiences of chronic illness can be described in terms of a different lived body, a struggle with threat to identity and self-esteem, a diminished lifeworld, and a challenging reality. These experiences relate to each other in a process of recurring loops, where the different ways of experiencing continue to influence each other over time. According to these findings, the use of phenomenography as a research approach has the potential to add to the understanding of how chronic illness can be experienced. Patients may benefit from seeing that their illness can be experienced in many different ways and that it has many aspects, which then can lead to a better understanding and coping with their illness. We suggest that it may be worthwhile to expand the scope of phenomenography outside pedagogics. This presupposes a revision of the application to include a wider and more comprehensive description, for instance, of the different ways illness and healthcare phenomena can be experienced, and how these different ways are related to each other, with less focus on hierarchical relations.

  12. Cardiovascular preventive care for patients with serious mental illness.

    Science.gov (United States)

    Ritchie, Sarah; Muldoon, Laura

    2017-11-01

    To determine whether patients with serious mental illness (SMI) are receiving preventive care for cardiovascular disease at the same rate as those without SMI in an interprofessional practice with a mandate to care for persons with barriers to access to the health care system. Quality improvement exercise using a case-matched retrospective chart review. Somerset West Community Health Centre in downtown Ottawa, Ont. All patients with SMI were adult, current primary care patients from the Somerset West Community Health Centre with a recorded diagnosis of SMI (bipolar affective disorder, schizophrenia, or other psychosis) during the 2-year period from June 1, 2013, to May 31, 2015. Two control patients (current primary care patients without SMI and matched for age and sex) were randomly chosen for each patient with SMI. They had at least 1 record in their electronic chart during the 2-year study period of measurement of blood pressure, weight, body mass index, smoking status, lipid screening results, or diabetes screening results. Prevention score was calculated as the number of preventive tests documented out of the possible 6. Secondary measures included age, sex, comorbidities (diabetes, hypertension, or hyperlipidemia), mental illness diagnosis, involvement of a psychiatrist, and involvement of a mental health case worker. Patients with SMI had higher rates of diabetes, hypertension, and dyslipidemia. Screening rates for the 6 outcome measures were very similar between patients with and without SMI. Patients with SMI who were under the care of a psychiatrist or who had a case worker had more complete screening results than those who had neither provider. As expected, patients with SMI had higher rates of metabolic comorbidities than control patients had. Screening rates for cardiovascular risk factors were similar in the 2 groups. Involvement of mental health case workers and psychiatrists in the patients' care might be linked to more complete preventive screening

  13. A center for self-management of chronic illnesses in diverse groups.

    Science.gov (United States)

    Inouye, Jillian; Boland, Mary G; Nigg, Claudio R; Sullivan, Kathleen; Leake, Anne; Mark, Debra; Albright, Cheryl L

    2011-01-01

    Prevention and successful treatment of chronic disease require a scientific understanding of the impacts and interactions of ethnicity, culture, and illness on self-management interventions. This article presents one approach to developing effective methods to address the needs of ethnic minorities living with chronic illnesses. Described is the University of Hawaii Center for Ohana Self-Management of Chronic Illnesses (COSMCI) located in the School of Nursing & Dental Hygiene and funded by the National Institute of Nursing Research (Award Number P20NR010671). The interdisciplinary center focuses on family and community self-management interventions in ethnically diverse populations with chronic illnesses. Areas discussed are: 1) the operational structure for creating an environment conducive to interdisciplinary ohana self-management chronic illness research in ethnically diverse populations; and 2) the development of sustainable interdisciplinary, biobehavioral research capacity. The COSMCI uses a social cognitive theory framework to guide the application of established self-management interventions to Asian and Pacific Island populations (API) through three conceptually linked research projects on HIV infection, type 2 diabetes, and chronic obstructive pulmonary disease. COSMI addresses the feasibility of sharing of lessons learned among the approaches taken. The interdisciplinary nature of COSMCI increases the potential success of the intervention efforts. Hawaii Medical Journal Copyright 2010.

  14. Care for patients with severe mental illness: the general practitioner's role perspective

    Directory of Open Access Journals (Sweden)

    Groenier Klaas H

    2009-05-01

    Full Text Available Abstract Background Patients with severe mental illness (SMI experience distress and disabilities in several aspects of life, and they have a higher risk of somatic co-morbidity. Both patients and their family members need the support of an easily accessible primary care system. The willingness of general practitioners and the impeding factors for them to participate in providing care for patients with severe mental illness in the acute and the chronic or residual phase were explored. Methods A questionnaire survey of a sample of Dutch general practitioners spread over the Netherlands was carried out. This comprised 20 questions on the GP's 'Opinion and Task Perspective', 19 questions on 'Treatment and Experiences', and 27 questions on 'Characteristics of the General Practitioner and the Practice Organisation'. Results 186 general practitioners distributed over urban areas (49%, urbanised rural areas (38% and rural areas (15% of the Netherlands participated. The findings were as follows: GPs currently considered themselves as the first contact in the acute psychotic phase. In the chronic or residual phase GPs saw their core task as to diagnose and treat somatic co-morbidity. A majority would be willing to monitor the general health of these patients as well. It appeared that GP trainers and GPs with a smaller practice setting made follow-up appointments and were willing to monitor the self-care of patients with SMI more often than GPs with larger practices. GPs also saw their role as giving support and information to the patient's family. However, they felt a need for recognition of their competencies when working with mental health care specialists. Conclusion GPs were willing to participate in providing care for patients with SMI. They considered themselves responsible for psychotic emergency cases, for monitoring physical health in the chronic phase, and for supporting the relatives of psychotic patients.

  15. Care for patients with severe mental illness: the general practitioner's role perspective.

    Science.gov (United States)

    Oud, Marian J T; Schuling, Jan; Slooff, Cees J; Groenier, Klaas H; Dekker, Janny H; Meyboom-de Jong, Betty

    2009-05-06

    Patients with severe mental illness (SMI) experience distress and disabilities in several aspects of life, and they have a higher risk of somatic co-morbidity. Both patients and their family members need the support of an easily accessible primary care system. The willingness of general practitioners and the impeding factors for them to participate in providing care for patients with severe mental illness in the acute and the chronic or residual phase were explored. A questionnaire survey of a sample of Dutch general practitioners spread over the Netherlands was carried out. This comprised 20 questions on the GP's 'Opinion and Task Perspective', 19 questions on 'Treatment and Experiences', and 27 questions on 'Characteristics of the General Practitioner and the Practice Organisation'. 186 general practitioners distributed over urban areas (49%), urbanised rural areas (38%) and rural areas (15%) of the Netherlands participated. The findings were as follows: GPs currently considered themselves as the first contact in the acute psychotic phase. In the chronic or residual phase GPs saw their core task as to diagnose and treat somatic co-morbidity. A majority would be willing to monitor the general health of these patients as well. It appeared that GP trainers and GPs with a smaller practice setting made follow-up appointments and were willing to monitor the self-care of patients with SMI more often than GPs with larger practices.GPs also saw their role as giving support and information to the patient's family.However, they felt a need for recognition of their competencies when working with mental health care specialists. GPs were willing to participate in providing care for patients with SMI. They considered themselves responsible for psychotic emergency cases, for monitoring physical health in the chronic phase, and for supporting the relatives of psychotic patients.

  16. The impact of chronic physical illness, maternal depressive symptoms, family functioning, and self-esteem on symptoms of anxiety and depression in children.

    Science.gov (United States)

    Ferro, Mark A; Boyle, Michael H

    2015-01-01

    The present study extends earlier research identifying an increased risk of anxiety among children with chronic physical illness (CwCPI) by examining a more complete model that explains how physical illness leads to increased symptoms of anxiety and depression. We tested a stress-generation model linking chronic physical illness to symptoms of anxiety and depression in a population-based sample of children aged 10 to 15 years. We hypothesized that having a chronic physical illness would be associated with more symptoms of anxiety and depression, increased levels of maternal depressive symptoms, more family dysfunction, and lower self-esteem; and, that maternal depressive symptoms, family dysfunction, and child self-esteem would mediate the influence of chronic physical illness on symptoms of anxiety and depression. Data came from the National Longitudinal Survey of Children and Youth (N = 10,646). Mediating processes were analyzed using latent growth curve modeling. Childhood chronic physical illness was associated with increases in symptoms of anxiety and depression, β = 0.20, p self-esteem, and in turn, increases in symptoms of anxiety and depression. CwCPI are at-risk for symptoms of anxiety and depression. Some of this elevated risk appears to work through family processes and child self-esteem. This study supports the use of family-centered care approaches among CwCPI to minimize burden on families and promote healthy psychological development for children.

  17. Finding joy in poor health: The leisure-scapes of chronic illness.

    Science.gov (United States)

    McQuoid, Julia

    2017-06-01

    Globally, increasing numbers of people face the challenge of enjoying life while living with long-term illness. Little research addresses leisure participation for people with chronic illness despite its links with mental and physical health and self-rated quality of life. I use a space-time geographical approach to explore experiences with leisure in everyday life for 26 individuals with chronic kidney disease (CKD) in Australia. I examine ways in which the spatial and temporal characteristics of illness management and symptoms shape where, when, and how participants can enjoy leisure, focusing on: 1) logistical conflicts between illness and leisure; 2) rhythmic interferences with the force of habit in skilful leisure performance; and 3) absorbing experiences of encounter with self and place through leisure. Data were collected from 2013 to 2014. Participants kept diaries over two sample days and then participated in semi-structured interviews. Findings show that the voluntary nature of leisure offered participants important benefits in coping with and managing illness over the long-term, including opportunities to experience greater sense of control, an alternative experience of one's body to the 'sick body', and knowledge creation that supports adaptation to the uncertainties of illness trajectories. The ability to engage in meaningful leisure was constrained by the shaping forces of illness symptoms and management on participants' leisure-scapes. Illness treatment regimens should therefore be adapted to better accommodate leisure participation for chronically ill patients, and leisure should be explicitly incorporated into illness management plans negotiated between patients and health practitioners. Finally, greater understanding of the transformative capacity of habit in activities of experimentation and play may have wider-reaching implications for leisure's potential applications in public health. Leisure should be taken seriously as a vehicle for enhancing

  18. Finding joy in poor health: The leisure-scapes of chronic illness

    Science.gov (United States)

    2017-01-01

    Globally, increasing numbers of people face the challenge of enjoying life while living with long-term illness. Little research addresses leisure participation for people with chronic illness despite its links with mental and physical health and self-rated quality of life. I use a space-time geographical approach to explore experiences with leisure in everyday life for 26 individuals with chronic kidney disease (CKD) in Australia. I examine ways in which the spatial and temporal characteristics of illness management and symptoms shape where, when, and how participants can enjoy leisure, focusing on: 1) logistical conflicts between illness and leisure; 2) rhythmic interferences with the force of habit in skilful leisure performance; and 3) absorbing experiences of encounter with self and place through leisure. Data were collected from 2013 to 2014. Participants kept diaries over two sample days and then participated in semi-structured interviews. Findings show that the voluntary nature of leisure offered participants important benefits in coping with and managing illness over the long-term, including opportunities to experience greater sense of control, an alternative experience of one’s body to the ‘sick body’, and knowledge creation that supports adaptation to the uncertainties of illness trajectories. The ability to engage in meaningful leisure was constrained by the shaping forces of illness symptoms and management on participants’ leisure-scapes. Illness treatment regimens should therefore be adapted to better accommodate leisure participation for chronically ill patients, and leisure should be explicitly incorporated into illness management plans negotiated between patients and health practitioners. Finally, greater understanding of the transformative capacity of habit in activities of experimentation and play may have wider-reaching implications for leisure’s potential applications in public health. Leisure should be taken seriously as a vehicle for

  19. Cost of Illness of Chronic Hepatitis B Infection in Vietnam

    NARCIS (Netherlands)

    Tu, Hong Anh T.; Woerdenbag, Herman J.; Riewpaiboon, Arthorn; Kane, Sumit; Le, Diep M.; Postma, Maarten J.; Li, Shu Chuen

    2012-01-01

    To estimate the total financial burden of chronic hepatitis B virus (HBV) infection for Vietnam by quantifying the direct medical, the direct nonmedical, and indirect costs among patients with various stages of chronic HBV infection. Direct medical cost data were retrieved retrospectively from

  20. Differential outcomes of adolescents with chronically ill and healthy parents

    NARCIS (Netherlands)

    Sieh, D.S.; Visser-Meily, J.M.A.; Meijer, A.M.

    2013-01-01

    Approximately 10% of children grow up with a parent who has been diagnosed with a chronic medical condition (CMC) and seem to be at risk for adjustment difficulties. We examined differences in behavioral, psychosocial and academic outcomes between 161 adolescents from 101 families with a chronically

  1. Chronic disease health risk behaviours amongst people with a mental illness.

    Science.gov (United States)

    Bartlem, Kate M; Bowman, Jennifer A; Bailey, Jacqueline M; Freund, Megan; Wye, Paula M; Lecathelinais, Christophe; McElwaine, Kathleen M; Campbell, Elizabeth M; Gillham, Karen E; Wiggers, John H

    2015-08-01

    Amongst people with a mental illness, modifiable health risk behaviours contribute substantially to increased chronic disease morbidity and mortality. This study examined the prevalence of and interest in changing such behaviours amongst community mental health service clients in Australia. A telephone interview was undertaken with Australian community mental health service clients. Participants reported engagement in four health risk behaviours: tobacco smoking, fruit and vegetable consumption, alcohol consumption, and physical activity. Participants were classified as at risk based upon Australian national guidelines. At-risk participants were asked whether they were considering improving their health risk behaviour within the next month. The association between psychiatric diagnosis and risk, and interest in improving health risk behaviours was examined. Risk prevalence was highest for inadequate vegetable consumption (78.3%), followed by inadequate fruit consumption (60%), smoking (50.7%), physical inactivity (46.8%), short-term alcohol risk (40.3%) and chronic alcohol risk (35.3%). A majority of at-risk participants were considering improving their health risk behaviour for smoking, physical inactivity and inadequate fruit and vegetable consumption (65.1%, 71.1%, and 53.3%, respectively). After adjusting for demographic factors, no diagnostic categories were associated with risk for any behaviour. Those with a diagnosis of depression were more likely to be interested in quitting smoking and increasing physical activity. Regardless of diagnosis, a high prevalence of chronic disease health risk behaviours was identified, with many participants expressing an interest in improving these behaviours. Such findings reinforce recommendations that preventive care addressing the chronic disease risks of clients be provided routinely by mental health clinicians. Australian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12613000693729. URL: www.anzctr.org.au/. © The

  2. Defining the neurotoxin derived illness chronic ciguatera using markers of chronic systemic inflammatory disturbances: a case/control study.

    Science.gov (United States)

    Shoemaker, Ritchie C; House, Dennis; Ryan, James C

    2010-01-01

    Ciguatoxins are extremely potent neurotoxins, produced by tropical marine dinoflagellates, that persistently enter into our food web. Over 100,000 people annually experience acute ciguatera poisoning from consuming toxic fish. Roughly 5% of these victims will develop chronic ciguatera (CC), a widespread, multisymptom, multisystem, chronic illness that can last tens of years. CC is marked by disproportionate disability and non-specific refractory symptoms such as fatigue, cognitive deficits and pain, and is suggestive of other illnesses. Its unknown pathophysiology makes both diagnosis and treatment difficult. We wanted to compare objective parameters of visual contrast sensitivity testing, measures of innate immune response and genetic markers in cases to controls to assess the potential for the presence of persistent inflammatory parameters that are demonstrated in other biotoxin associated illnesses at a single specialty clinic. Using 59 CC cases and 59 controls we present in retrospective review, in all cases, abnormalities in immune responses paralleling the chronic systemic inflammatory response syndrome seen in several other chronic diseases. This study defines a preliminary case definition using medical history, total symptoms, visual contrast sensitivity, HLA DR genotype analysis, reduction of regulatory neuropeptides VIP and MSH, and multiple measures of inflammatory immune response, especially C4a and TGFβ1, thereby providing a basis for identification and targeted therapy. CC provides a model for chronic human illness associated with initiation of inflammatory responses by biologically produced neurotoxins. Copyright © 2010 Elsevier Inc. All rights reserved.

  3. Peer Attachment, Perceived Parenting Style, Self-concept, and School Adjustments in Adolescents with Chronic Illness.

    Science.gov (United States)

    Ahn, Jeong-Ah; Lee, Sunhee

    2016-12-01

    The purpose of this study was to identify how peer attachment and parenting style differentially affect self-concept and school adjustment in adolescents with and without chronic illness. A cross-sectional study using multiple group analysis on the Korean panel data was used. A nationwide stratified multistage cluster sampling method was used and the survey was conducted in 2013 on 2,092 first-year middle school students in Korea. We used standardized instruments by the National Youth Policy Institute to measure peer attachment, parenting style, self-concept, and school adjustment. Multiple-group structural equation modeling was used to evaluate the difference of relations for peer attachment, parenting style, self-concept, and school adjustment variable between adolescents with chronic illness and those without chronic illness. The model fit of a multiple-group structural equation modeling was good. The difference of the path from negative parenting style to self-concept between the two groups was significant, and a significant between-group difference in the overall path was found. This indicated that self-concept in adolescents with chronic illness was more negatively affected by negative parenting style than in adolescents without chronic illness. Healthcare providers can promote the process of school adjustment in several ways, such as discussing this issue directly with adolescent patients, along with their parents and peers, examining how the organization and content of the treatment can be modified according to the adolescents' school life. Copyright © 2016. Published by Elsevier B.V.

  4. Tools to assess living with a chronic illness: A systematic review.

    Science.gov (United States)

    Ambrosio, Leire; Portillo, Mari Carmen

    2018-05-16

    To analyse the currently available instruments to assess living with a chronic illness and related aspects. A review of the evidence was made using the databases: Medline, CINHAL, PsycINFO, Cochrane Library, Embase and Cuiden. The criteria that limited the search were: the language, English and / or Spanish and studies carried out in an adult population. Years of article publication were not used as a limit. A total of 16 instruments were identified and analysed that apparently measured the concept of living with a chronic illness and/or related aspects. According to the name of the instrument, four seemed to evaluate the concept of living with a chronic illness while the rest of the instruments evaluated aspects intrinsically related to the concept of "living with", such as attributes or the meaning of living with a chronic illness. Different instruments were identified to evaluate daily living for the chronically ill patient, as well as related aspects. According to this review, further validation studies are required in other populations and/or contexts in order to achieve valid and reliable instruments that could be used in clinical practice. Copyright © 2018 Elsevier España, S.L.U. All rights reserved.

  5. The role of hospitals in bridging the care continuum: a systematic review of coordination of care and follow-up for adults with chronic conditions.

    Science.gov (United States)

    De Regge, Melissa; De Pourcq, Kaat; Meijboom, Bert; Trybou, Jeroen; Mortier, Eric; Eeckloo, Kristof

    2017-08-09

    Multiple studies have investigated the outcome of integrated care programs for chronically ill patients. However, few studies have addressed the specific role hospitals can play in the downstream collaboration for chronic disease management. Our objective here is to provide a comprehensive overview of the role of the hospitals by synthesizing the advantages and disadvantages of hospital interference in the chronic discourse for chronically ill patients found in published empirical studies. Systematic literature review. Two reviewers independently investigated relevant studies using a standardized search strategy. Thirty-two articles were included in the systematic review. Overall, the quality of the included studies is high. Four important themes were identified: the impact of transitional care interventions initiated from the hospital's side, the role of specialized care settings, the comparison of inpatient and outpatient care, and the effect of chronic care coordination on the experience of patients. Our results show that hospitals can play an important role in transitional care interventions and the coordination of chronic care with better outcomes for the patients by taking a leading role in integrated care programs. Above that, the patient experiences are positively influenced by the coordinating role of a specialist. Specialized care settings, as components of the hospital, facilitate the coordination of the care processes. In the future, specialized care centers and primary care could play a more extensive role in care for chronic patients by collaborating.

  6. Report on Honduras: ripples in the pond--the financial crisis and remittances to chronically ill patients in Honduras.

    Science.gov (United States)

    Piette, John D; Mendoza-Avelares, Milton O; Chess, Laura; Milton, Evan C; Matiz Reyes, Armando; Rodriguez-Saldaña, Joel

    2012-01-01

    The U.S. financial crisis has affected employment opportunities for Latino immigrants, and this could affect their ability to send financial assistance, or "remittances", to chronically ill family members in their home country. In a cross-sectional survey of 624 chronically ill adults conducted in Honduras between June and August 2009, respondents reported their receipt of remittances, health service use, and cost-related access barriers. Fifty-four percent of respondents reported relatives living outside the country, and of this group, 66 percent (37% of the overall sample) received remittances. Seventy-four percent of respondents receiving remittances reported a decrease over the prior year, mostly due to job losses among their relatives abroad. Respondents reporting reductions in remittances received significantly less per month, on average, than those without a reduction (US $170 vs. $234; p = 0.01). In multivariate models, respondents experiencing a reduction in remittances used fewer health services and medications due to cost concerns. Remittance payments from relatives resident in the United States are a major source of income for chronically ill individuals in Latin America. Most recipients of remittances reported a reduction during the financial downturn that affected their access to care.

  7. Caring for families of the terminally ill in Malaysia from palliative care nurses' perspectives.

    Science.gov (United States)

    Namasivayam, Pathma; Lee, Susan; O'Connor, Margaret; Barnett, Tony

    2014-01-01

    To describe the process that nurses experienced in engaging with families in Malaysian palliative care settings and the challenges they faced. In palliative care settings, nurses and the terminally ill person's family members interact very closely with each other. It is important for nurses to work with families to ensure that the care of the terminally ill person is optimised. A qualitative design using grounded theory methods was used to describe how nurses engaged with families and the challenges they faced. Twenty-two nurses from home care and inpatient palliative care settings across Malaysia participated in this study. Data were collected through seven interviews and eight focus group discussions conducted between 2007-2009. The main problem identified by nurses was the different expectations to patient care with families. The participants used the core process of Engaging with families to resolve these differences and implemented strategies described as Preparing families for palliative care, Modifying care and Staying engaged to promote greater consistency and quality of care. When participants were able to resolve their different expectations with families, these resulted in positive outcomes, described as Harmony. However, negative outcomes of participants not being able to resolve their different expectations with families were Disharmony. This study highlights the importance of engaging and supporting families of the terminally ill as well as providing a guide that may be used by nurses and carers to better respond to families' needs and concerns. The study draws attention to the need for formal palliative care education, inclusive of family care, to enable nurses to provide the terminally ill person and their family effective and appropriate care. © 2013 John Wiley & Sons Ltd.

  8. The Exnovation of Chronic Care Management Processes by Physician Organizations.

    Science.gov (United States)

    Rodriguez, Hector P; Henke, Rachel Mosher; Bibi, Salma; Ramsay, Patricia P; Shortell, Stephen M

    2016-09-01

    Policy Points The rate of adoption of chronic care management processes (CMPs) by physician organizations has been fairly slow in spite of demonstrated effectiveness of CMPs in improving outcomes of chronic care. Exnovation (ie, removal of innovations) by physician organizations largely explains the slow population-level increases in practice use of CMPs over time. Expanded health information technology functions may aid practices in retaining CMPs. Low provider reimbursement by Medicaid programs, however, may contribute to disinvestment in CMPs by physician organizations. Exnovation is the process of removal of innovations that are not effective in improving organizational performance, are too disruptive to routine operations, or do not fit well with the existing organizational strategy, incentives, structure, and/or culture. Exnovation may contribute to the low overall adoption of care management processes (CMPs) by US physician organizations over time. Three national surveys of US physician organizations, which included common questions about organizational characteristics, use of CMPs, and health information technology (HIT) capabilities for practices of all sizes, and Truven Health Insurance Coverage Estimates were integrated to assess organizational and market influences on the exnovation of CMPs in a longitudinal cohort of 1,048 physician organizations. CMPs included 5 strategies for each of 4 chronic conditions (diabetes, asthma, congestive heart failure, and depression): registry use, nurse care management, patient reminders for preventive and care management services to prevent exacerbations of chronic illness, use of nonphysician clinicians to provide patient education, and quality of care feedback to physicians. Over one-third (34.1%) of physician organizations exnovated CMPs on net. Quality of care data feedback to physicians and patient reminders for recommended preventive and chronic care were discontinued by over one-third of exnovators, while nurse

  9. The Exnovation of Chronic Care Management Processes by Physician Organizations

    Science.gov (United States)

    HENKE, RACHEL MOSHER; BIBI, SALMA; RAMSAY, PATRICIA P.; SHORTELL, STEPHEN M.

    2016-01-01

    Policy Points The rate of adoption of chronic care management processes (CMPs) by physician organizations has been fairly slow in spite of demonstrated effectiveness of CMPs in improving outcomes of chronic care.Exnovation (ie, removal of innovations) by physician organizations largely explains the slow population‐level increases in practice use of CMPs over time.Expanded health information technology functions may aid practices in retaining CMPs. Low provider reimbursement by Medicaid programs, however, may contribute to disinvestment in CMPs by physician organizations. Context Exnovation is the process of removal of innovations that are not effective in improving organizational performance, are too disruptive to routine operations, or do not fit well with the existing organizational strategy, incentives, structure, and/or culture. Exnovation may contribute to the low overall adoption of care management processes (CMPs) by US physician organizations over time. Methods Three national surveys of US physician organizations, which included common questions about organizational characteristics, use of CMPs, and health information technology (HIT) capabilities for practices of all sizes, and Truven Health Insurance Coverage Estimates were integrated to assess organizational and market influences on the exnovation of CMPs in a longitudinal cohort of 1,048 physician organizations. CMPs included 5 strategies for each of 4 chronic conditions (diabetes, asthma, congestive heart failure, and depression): registry use, nurse care management, patient reminders for preventive and care management services to prevent exacerbations of chronic illness, use of nonphysician clinicians to provide patient education, and quality of care feedback to physicians. Findings Over one‐third (34.1%) of physician organizations exnovated CMPs on net. Quality of care data feedback to physicians and patient reminders for recommended preventive and chronic care were discontinued by over one

  10. Integration of Biosensors and Drug Delivery Technologies for Early Detection and Chronic Management of Illness

    Directory of Open Access Journals (Sweden)

    Viness Pillay

    2013-06-01

    Full Text Available Recent advances in biosensor design and sensing efficacy need to be amalgamated with research in responsive drug delivery systems for building superior health or illness regimes and ensuring good patient compliance. A variety of illnesses require continuous monitoring in order to have efficient illness intervention. Physicochemical changes in the body can signify the occurrence of an illness before it manifests. Even with the usage of sensors that allow diagnosis and prognosis of the illness, medical intervention still has its downfalls. Late detection of illness can reduce the efficacy of therapeutics. Furthermore, the conventional modes of treatment can cause side-effects such as tissue damage (chemotherapy and rhabdomyolysis and induce other forms of illness (hepatotoxicity. The use of drug delivery systems enables the lowering of side-effects with subsequent improvement in patient compliance. Chronic illnesses require continuous monitoring and medical intervention for efficient treatment to be achieved. Therefore, designing a responsive system that will reciprocate to the physicochemical changes may offer superior therapeutic activity. In this respect, integration of biosensors and drug delivery is a proficient approach and requires designing an implantable system that has a closed loop system. This offers regulation of the changes by means of releasing a therapeutic agent whenever illness biomarkers prevail. Proper selection of biomarkers is vital as this is key for diagnosis and a stimulation factor for responsive drug delivery. By detecting an illness before it manifests by means of biomarkers levels, therapeutic dosing would relate to the severity of such changes. In this review various biosensors and drug delivery systems are discussed in order to assess the challenges and future perspectives of integrating biosensors and drug delivery systems for detection and management of chronic illness.

  11. Considering the CPR Decision Through the Lens of Prospect Theory in the Context of Advanced Chronic Illness.

    Science.gov (United States)

    Bern-Klug, Mercedes

    2017-02-01

    It is common for people with advanced chronic illness to have many health care providers and many health care-related visits. It is also common, during those visits, to be asked whether attempts at cardiopulmonary resuscitation (CPR) are desired, in the event of cardiac arrest. Although the question is common, the implications of a "yes" or a "no" may not be well understood. Although CPR can be a life-saving procedure, it is not always in the patient's best interest. This article discusses experiences with CPR of 2 older women (and their adult children) during their last years of life, and uses concepts from prospect theory to make suggestions for changes in the way health care providers and patients approach advance care planning including the CPR decision. © The Author 2016. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  12. Review article Homebound instruction for students with chronic illness: reducing risk outside of the box

    Directory of Open Access Journals (Sweden)

    Steven R. Shaw

    2014-05-01

    Full Text Available Students with chronic illness are at risk for a host of academic and social problems. The risk is exacerbated when students are unable to attend school short term or long term due to medical problems. Educators may be able to reduce academic and social risk for students with chronic illness through effective homebound instruction. However, there remain many barriers to effective homebowund instruction. Effective interdisciplinary and community coordination, development of policies, teacher support, inclusion of families, and use of technology can be combined to overcome these barriers and create effective homebound programs and policies. The result is reduced risk for the large and vulnerable population of students with chronic illness.

  13. Character Development Pilot Evaluation of Two Programs for Youth with Chronic Illness

    Directory of Open Access Journals (Sweden)

    Gary Maslow

    2016-05-01

    Full Text Available This article describes the pilot evaluation of two Positive Youth Development (PYD programs for youth with child onset chronic illness (COCI, reporting how the programs influenced participants’ character development. College students with COCI led high school students with COCI through activities pertaining to different aspects of growing up with a chronic illness. Participants completed the Positive Youth Development Inventory-Short Form (PYDI-S, which measures seven domains of youth perceptions of the contribution to their development from the program. Participants reported that both programs helped them the most with personal standards, which corresponds well to character development on the full version of the Positive Youth Development Inventory (PYDI. They also had high scores on prosocial behavior and future orientation, both important domains for character development. We discuss the idea that interventions promoting character development for youth with COCI are critical for promoting a positive narrative for chronically-ill youth, their parents, and society.

  14. Alagille Syndrome: A Case Report Highlighting Dysmorphic Facies, Chronic Illness, and Depression

    Directory of Open Access Journals (Sweden)

    James J. Bresnahan

    2016-01-01

    Full Text Available Alagille syndrome is a rare multisystem disorder affecting the liver, heart, vertebrae, eyes, and face. Alagille syndrome shares multiple phenotypic variants of other congenital or chronic childhood illnesses such as DiGeorge syndrome, Down syndrome, spina bifida, type 1 diabetes mellitus, and cystic fibrosis. All of these chronic illnesses have well-established links to psychiatric conditions. There are few community resources for Alagille patients, as it is an extremely rare condition. Despite the overlap with other chronic childhood illnesses, the psychiatric manifestations of Alagille syndrome have not been previously discussed in literature. The current study is a case report of a twelve-year-old female hospitalized in our pediatric psychiatric hospital for suicidal ideation with intent and plan. The patient had major depressive disorder, anxiety, other specified feeding and eating disorder, and attention-deficit/hyperactive disorder.

  15. Designing Shared Electronic Records for Chronic Care

    DEFF Research Database (Denmark)

    Bansler, Jørgen Peter; Havn, Erling C.; Mønsted, Troels

    2010-01-01

    ICDs (implantable cardioverter-defibrillator). These are chronic patients who usually see several different healthcare providers on a regular basis. The main findings so far are: (1) Most of the data produced and recorded as part of the care process are context-specific and often difficult to interpret...

  16. Health Care Professionals' Perceptions of Seriously Ill Women.

    Science.gov (United States)

    Hardin, Kimeron Norman

    1990-01-01

    The research was designed to measure the perceptions of health care professionals toward women with serious illness. Physicians, psychologists and nurses were randomly chosen from lists of licensed practicing professionals and were surveyed. Each respondent read one of four vignettes describing a woman who had received one of four diagnoses: breast cancer, lung cancer, heart attack, or severe burn. The respondents were asked to respond to the Profile of Mood States (POMS) as they perceived the woman had been feeling during the past week. They then answered a series of ten questions about the woman's recovery and about their own anticipated behaviors while interacting with her. Two-way ANOVAs revealed that nurses and psychologists perceived the woman as having more mood disturbance and they saw more need for psychological counseling than physicians, regardless of her diagnosis. Several differences emerged in terms of perceptions of diagnosis. Subjects perceived themselves as being more comfortable around heart attack patients than lung cancer patients, breast cancer patients or burn patients and as having more difficulty talking to a woman with lung cancer than a woman with a heart attack. They also perceived a woman with lung cancer as having poorer chances of survival and they perceived women with more disfiguring disorders, breast cancer and severe burns, as having more sexual adjustment problems than the other diagnostic groups. The results of this survey supports the need for training for health care professionals in recognizing psychological distress in, and appropriately referring, seriously ill women.

  17. Quality of life, treatment adherence, and locus of control: multiple family groups for chronic medical illnesses.

    Science.gov (United States)

    López-Larrosa, Silvia

    2013-12-01

    The Multiple Family Groups (MFGs) approach for patients with a chronic medical illness and their families is a structured psychoeducational program that unfolds in six weekly 90-minute sessions. In the MFGs, patients and family members explore new ways to balance illness and nonillness priorities in family life (Steinglass, 1998; Steinglass, 2000 Cuadernos de Terapia Familiar, 44-45, 11; Steinglass, Ostroff, & Steinglass, 2011 Family Process, 50, 393). © FPI, Inc.

  18. The economic impact of the insured patients with severe chronic and acute illnesses: a qualitative approach

    Directory of Open Access Journals (Sweden)

    Budi Aji

    2014-10-01

    Full Text Available Background: Little research has focused on the economic hardship among the insured with severe illnesses and high treatment costs, in particular, the consequence of poorer insurance coverage for high-cost illnesses. Therefore, we presented the case for identifying the experiences of insured patients with severe chronic and acute illnesses. This study identified a qualitative understanding of the economic impact of severe chronic and acute illnesses and household strategies to deal with high treatment costs. Design: Interviews were conducted with 19 insured households of three different health insurance programs with a family member that had been hospitalized for severe chronic or acute illnesses in either Banyumas or Margono Sukarjo hospitals in Banyumas, Central Java, Indonesia. A thematic analysis was applied to guide the interpretation of the data. Results: Insured households with a family member that had been hospitalized for severe chronic and acute illnesses were greatly affected by the high treatment costs. Four major issues emerged from this qualitative study: insured patients are still burdened with high out-of-pocket payments, households adopt various strategies to cope with the high cost of treatments, households experience financial hardships, and positive and negative perceptions of the insured regarding their health insurance coverage for acute and chronic illnesses. Conclusions: Askes and Jamsostek patients faced financial burdens from high cost sharing for hospital amenities, non-covered drugs, and treatments and other indirect costs. Meanwhile, Jamkesmas beneficiaries faced no financial burden for related medical services but were rather burdened with indirect costs for the carers. Households relied on internal resources to cover hospital bills as the first strategy, which included the mobilization of savings, sale of assets, and borrowing of money. External support was tapped secondarily and included financial support from

  19. Perceptions of chronically ill and healthy consumers about electronic personal health records: a comparative empirical investigation.

    Science.gov (United States)

    Cocosila, Mihail; Archer, Norm

    2014-07-23

    To develop a model of consumer perceptions of electronic personal health records (PHRs) and validate it in a comparative study between consumers who report having a chronic illness and those who report being well. A model of PHR use motivators and barriers was built and tested through a national survey across Canada. Data were collected from 800 individuals, 18 years or older. Half reported having a chronic illness or disability and half reported being well. Analyses were performed with structural equation modelling techniques. A total of 389 answers from chronically ill and 383 from well participants were collected. Perceived usefulness was the key explanation of the intention to use PHRs for both ill and well people (total effect of 0.601 and 0.565, respectively) followed by security, privacy and trust in PHRs (total effect of 0.377 and 0.479, respectively). Conversely, computer anxiety was perceived as a significant barrier (total effect of -0.327 for ill individuals and -0.212 for well individuals). The model proposed was appropriate in explaining key consumer positive and negative perceptions on electronic PHR use. We found little difference in perceptions of electronic PHRs between chronically ill and well individuals, although self-reporting their health status might have influenced the results. To increase the adoption rate of electronic PHRs among both chronically ill and well consumers it is necessary to reinforce consumer perceptions of the usefulness of and trust in these eHealth technologies while mitigating their anxieties about computer use in general. 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.

  20. Using Cognitive Behavior Therapy and Mindfulness Techniques in the Management of Chronic Pain in Primary Care.

    Science.gov (United States)

    Baker, Norah

    2016-06-01

    Chronic pain and its associated syndrome have become increasingly prevalent in primary care. With the increase in narcotic use and subsequent adverse events, primary care physicians often seek safer alternatives to treating this condition. Prescribing narcotics necessitates using methods to screen for high abuse risk and protect against misuse. With the understanding of how chronic pain is related to mental illnesses such as depression and posttraumatic stress disorder, mindfulness techniques and behavioral therapy can be used to help decrease the dependence on dangerous opioid medications and help patients understand, accept, and cope with their chronic pain. Copyright © 2016 Elsevier Inc. All rights reserved.

  1. Medication cost problems among chronically ill adults in the US: did the financial crisis make a bad situation even worse?

    Directory of Open Access Journals (Sweden)

    Piette JD

    2011-04-01

    Full Text Available John D Piette1, Ann Marie Rosland1, Maria J Silveira1, Rodney Hayward1, Colleen A McHorney21Ann Arbor VA Healthcare System, Ann Arbor, MI, USA; 2US Outcomes Research, Merck and Co, Inc, North Wales, PA, USAAbstract: A national internet survey was conducted between March and April 2009 among 27,302 US participants in the Harris Interactive Chronic Illness Panel. Respondents reported behaviors related to cost-related medication non-adherence (CRN and the impacts of medication costs on other aspects of their daily lives. Among respondents aged 40–64 and looking for work, 66% reported CRN in 2008, and 41% did not fill a prescription due to cost pressures. More than half of respondents aged 40–64 and nearly two-thirds of those in this group who were looking for work or disabled reported other impacts of medication costs, such as cutting back on basic needs or increasing credit card debt. More than one-third of respondents aged 65+ who were working or looking for work reported CRN. Regardless of age or employment status, roughly half of respondents reporting medication cost hardship said that these problems had become more frequent in 2008 than before the economic recession. These data show that many chronically ill patients, particularly those looking for work or disabled, reported greater medication cost problems since the economic crisis began. Given links between CRN and worse health, the financial downturn may have had significant health consequences for adults with chronic illness.Keywords: medication adherence, cost-of-care, access to care, chronic disease

  2. Post-millennial trends of socioeconomic inequalities in chronic illness among adults in Germany.

    Science.gov (United States)

    Hoebel, Jens; Kuntz, Benjamin; Moor, Irene; Kroll, Lars Eric; Lampert, Thomas

    2018-03-27

    Time trends in health inequalities have scarcely been studied in Germany as only few national data have been available. In this paper, we explore trends in socioeconomic inequalities in the prevalence of chronic illness using Germany-wide data from four cross-sectional health surveys conducted between 2003 and 2012 (n = 54,197; ages 25-69 years). We thereby expand a prior analysis on post-millennial inequality trends in behavioural risk factors by turning the focus to chronic illness as the outcome measure. The regression-based slope index of inequality (SII) and relative index of inequality (RII) were calculated to estimate the extent of absolute and relative socioeconomic inequalities in chronic illness, respectively. The results for men revealed a significant increase in the extent of socioeconomic inequalities in chronic illness between 2003 and 2012 on both the absolute and relative scales (SII 2003  = 0.06, SII 2012  = 0.17, p-trend = 0.013; RII 2003  = 1.18, RII 2012  = 1.57, p-trend = 0.013). In women, similar increases in socioeconomic inequalities in chronic illness were found (SII 2003  = 0.05, SII 2012  = 0.14, p-trend = 0.022; RII 2003  = 1.14, RII 2012  = 1.40, p-trend = 0.021). Whereas in men this trend was driven by an increasing prevalence of chronic illness in the low socioeconomic group, the trend in women was predominantly the result of a declining prevalence in the high socioeconomic group.

  3. Systematic review of positive youth development programs for adolescents with chronic illness.

    Science.gov (United States)

    Maslow, Gary R; Chung, Richard J

    2013-05-01

    The Positive Youth Development (PYD) framework has been successfully used to support at-risk youth. However, its effectiveness in fostering positive outcomes for adolescents with chronic illness has not been established. We performed a systematic review of PYD-consistent programs for adolescents with chronic illness. Data sources included PubMed, CINAHL, and PsychINFO. Guided by an analytic framework, we searched for studies of PYD-consistent programs serving adolescents and young adults aged 13 through 24 with chronic illness. References were screened iteratively with increasing depth until a focused cohort was obtained and reviewed in full. The authors separately reviewed the studies using structured analysis forms. Relevant study details were abstracted during the review process. Fifteen studies describing 14 programs were included in the analysis. Three comprehensive programs included all 3 core components of a PYD program, including opportunities for youth leadership, skill building, and sustained connections between youth and adults. Four programs were primarily mentoring programs, and 7 others focused on youth leadership. Programs served youth with a variety of chronic illnesses. The quality and type of evaluation varied considerably, with most reporting psychosocial outcomes but only a few including medical outcomes. The PYD-consistent programs identified in this review can serve as models for the development of youth development programs for adolescents with chronic illness. Additional study is needed to evaluate such programs rigorously with respect to both psychosocial and health-related outcomes. PYD-consistent programs have the potential to reach youth with chronic illness and promote positive adult outcomes broadly.

  4. Psychological interventions for mental health disorders in children with chronic physical illness: a systematic review.

    Science.gov (United States)

    Bennett, Sophie; Shafran, Roz; Coughtrey, Anna; Walker, Susan; Heyman, Isobel

    2015-04-01

    Children with chronic physical illness are significantly more likely to develop common psychiatric symptoms than otherwise healthy children. These children therefore warrant effective integrated healthcare yet it is not established whether the known, effective, psychological treatments for symptoms of common childhood mental health disorders work in children with chronic physical illness. EMBASE, MEDLINE, PsycINFO and CINAHL databases were searched with predefined terms relating to evidence-based psychological interventions for psychiatric symptoms in children with chronic physical illness. We included all studies (randomised and non-randomised designs) investigating interventions aimed primarily at treating common psychiatric symptoms in children with a chronic physical illness in the review. Two reviewers independently assessed the relevance of abstracts identified, extracted data and undertook quality analysis. Ten studies (209 children, including 70 in control groups) met the criteria for inclusion in the review. All studies demonstrated some positive outcomes of cognitive behavioural therapy for the treatment of psychiatric symptoms in children with chronic physical illness. Only two randomised controlled trials, both investigating interventions for symptoms of depression, were found. There is preliminary evidence that cognitive behavioural therapy has positive effects in the treatment of symptoms of depression and anxiety in children with chronic physical illness. However, the current evidence base is weak and fully powered randomised controlled trials are needed to establish the efficacy of psychological treatments in this vulnerable population. 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.

  5. Current and Potential Support for Chronic Disease Management in the United States: The Perspective of Family and Friends of Chronically Ill Adults

    Science.gov (United States)

    Rosland, Ann-Marie; Heisler, Michele; Janevic, Mary; Connell, Cathleen; Langa, Kenneth M.; Kerr, Eve A.; Piette, John D.

    2013-01-01

    Objectives Family members and friends can be an important source of self-management support for older adults with chronic diseases. We characterized the U.S. population of potential and current “disease management supporters” for people with chronic illness who are ADL-independent, the help that supporters could provide, and barriers to increasing support. Methods Nationally-representative survey of U.S. adults (N=1,722). Results 44% of respondents (representing 100 million US adults) help a family member or friend with chronic disease management; another 9% (representing 21 million US adults) are willing to start. Most are willing to assist with key tasks such as medication use and communicating with providers, although they feel constrained by privacy concerns and a lack of patient health information. Discussion The majority of U.S. adults already help or would be willing to help one of their family members or friends with chronic illness care. Supporters' specific concerns could be addressed through innovative programs. PMID:23795624

  6. The influence of frailty syndrome on acceptance of illness in elderly patients with chronic obstructive pulmonary disease

    Directory of Open Access Journals (Sweden)

    Uchmanowicz I

    2016-09-01

    Full Text Available Izabella Uchmanowicz,1 Beata Jankowska-Polanska,1 Mariusz Chabowski,2 Bartosz Uchmanowicz,1 Andrzej M Fal3 1Department of Clinical Nursing, Faculty of Health Science, Wroclaw Medical University, 2Division of Nursing in Surgical Procedures, Department of Clinical Nursing, Faculty of Health Science, Wroclaw Medical University, 3Department of Healthcare Organisation and Economics, National Institute of Public Health, National Institute of Hygiene, Warsaw, Poland Abstract: COPD is one of the most debilitating diseases. Frailty syndrome and advanced age may decrease the acceptance of illness, quality of life, and worsen health conditions in these patients, as well as lead to an increase in health care expenses. The aim of the study was to assess how the level of frailty affects the acceptance of illness in elderly patients with COPD. We also aimed to evaluate the associations between sociodemographic and clinical factors and the level of acceptance of illness, anxiety, and frailty in this group of patients. The study included 102 COPD patients with a mean age of 63.2 (standard deviation =6.5 years and grades I (3%, II (37%, III (52%, and IV (8% by Global Initiative for Chronic Obstructive Lung Disease. The Polish versions of the Acceptance of Illness Scale and Tilburg frailty indicator were used. Frailty syndrome was found in 77 (75.5% patients, with an average score of 7.42 (standard deviation =2.24. Coexisting diseases such as hypertension (46.07%, coronary artery disease (32.35%, heart failure (28.43%, diabetes (18.63%, and heart arrhythmia (9.8% were found among the subjects. The overall level of acceptance of illness was 20.6 (standard deviation =7.62. A lower level of acceptance of illness was associated with a higher level of frailty, especially in the physical and social domain. Elderly patients with severe COPD are more prone to frailty and decreased acceptance of their disease in comparison to patients with other chronic diseases

  7. Paradise regained: how elderly people who are chronically mentally ill reinvent a social self.

    Science.gov (United States)

    van Dongen, E

    2001-01-01

    Throughout their lives, chronic mentally ill people go through a series of disruptive events and periods of suffering. In general, the literature suggests that people with long-standing mental illnesses are extremely vulnerable and cannot maintain themselves without assistance. When old age is added to this mix, the result is a heavy burden for both the patient and the caregiver. While the negative consequences, for both patient and caregiver, of suffering chronic illness during old age must not be ignored, neither should the positive periods in these people's lives. There are times when the mutual identification between cold and young yields vivid examples of the latter's ability to reconstitute a social self. In this paper I look at chronic illness in old age as a struggle on the part of the sufferer to reconcile her/his experiences of suffering in the light of approaching death. I attempt to show that the process of aging with a chronic mental illness involves not only decay and suffering, but also resilience and vitality.

  8. Physician self-referral for imaging and the cost of chronic care for Medicare beneficiaries.

    Science.gov (United States)

    Hughes, Danny R; Sunshine, Jonathan H; Bhargavan, Mythreyi; Forman, Howard

    2011-09-01

    As the cost of both chronic care and diagnostic imaging continue to rise, it is important to consider methods of cost containment in these areas. Therefore, it seems important to study the relationship between self-referral for imaging and the cost of care of chronic illnesses. Previous studies, mostly of acute illnesses, have found self-referral increases utilization and, thus, probably imaging costs. To evaluate the relationship between physician self-referral for imaging and the cost of episodes of chronic care. Using Medicare's 5% Research Identifiable Files for 2004 to 2007, episodes of care were constructed for 32 broad chronic conditions using the Symmetry Episode Treatment Grouper. Using multivariate regression, we evaluated the association between whether the treating physician self-referred for imaging and total episode cost, episode imaging cost, and episode nonimaging cost. Analyses were controlled for patient characteristics (eg, age and general health status), the condition's severity, and treating physician specialty. Self-referral in imaging was significantly (P nonimaging costs were much more often significantly higher (in 24 combinations) with self-referral than being lower (in 4 combinations). We find broad evidence that physician self-referral for imaging is associated with significantly and substantially higher chronic care costs. Unless self-referral has empirically demonstrable benefits, curbing self-referral may be an appropriate route to containing chronic care costs.

  9. Self-reported medical, medication and laboratory error in eight countries: risk factors for chronically ill adults.

    Science.gov (United States)

    Scobie, Andrea

    2011-04-01

    To identify risk factors associated with self-reported medical, medication and laboratory error in eight countries. The Commonwealth Fund's 2008 International Health Policy Survey of chronically ill patients in eight countries. None. A multi-country telephone survey was conducted between 3 March and 30 May 2008 with patients in Australia, Canada, France, Germany, the Netherlands, New Zealand, the UK and the USA who self-reported being chronically ill. A bivariate analysis was performed to determine significant explanatory variables of medical, medication and laboratory error (P error: age 65 and under, education level of some college or less, presence of two or more chronic conditions, high prescription drug use (four+ drugs), four or more doctors seen within 2 years, a care coordination problem, poor doctor-patient communication and use of an emergency department. Risk factors with the greatest ability to predict experiencing an error encompassed issues with coordination of care and provider knowledge of a patient's medical history. The identification of these risk factors could help policymakers and organizations to proactively reduce the likelihood of error through greater examination of system- and organization-level practices.

  10. Care of Adult Refugees with Chronic Conditions.

    Science.gov (United States)

    Terasaki, Genji; Ahrenholz, Nicole Chow; Haider, Mahri Z

    2015-09-01

    Refugees share a common experience of displacement from their country of origin, migration, and resettlement in an unfamiliar country. More than 17 million people have fled their home countries due to war, generalized violence, and persecution. US primary care physicians must care for their immediate and long-term medical needs. Challenges include (1) language and cultural barriers, (2) high rates of mental health disorders, (3) higher prevalence of latent infections, and (4) different explanatory models for chronic diseases. This article discusses management strategies for common challenges that arise in the primary care of refugees. Copyright © 2015 Elsevier Inc. All rights reserved.

  11. Chronic stress and illness in children: the role of allostatic load.

    Science.gov (United States)

    Johnston-Brooks, C H; Lewis, M A; Evans, G W; Whalen, C K

    1998-01-01

    Recent studies of stress have highlighted the contributions of chronic psychological and environmental stressors to health and well-being. Children may be especially vulnerable to the negative effects of chronic stressors. Allostasis, the body's ability to adapt and adjust to environmental demands, has been proposed as an explanatory mechanism for the stress-health link, yet empirical evidence is minimal. This study tested the proposition that allostasis may be an underlying physiological mechanism linking chronic stress to poor health outcomes in school-aged children. Specifically, we examined whether allostasis would mediate or moderate the link between chronic stress and health. To test the hypothesis that allostasis contributes to the relation between chronic stress and poor health, we examined household density as a chronic environmental stressor, cardiovascular reactivity (CVR) as a marker of allostatic load, and number of school absences due to illness as the health outcome in a sample of 81 boys. Structural equation modeling indicated that the mediating model fit the data well, accounting for 17% of the variance in days ill. Results provide the first evidence that CVR may mediate the relation between household density and medical illness in children. More generally, these findings support the role of allostasis as an underlying mechanism in the link between chronic stress and health.

  12. Increased risk of treatment with antidepressants in stroke compared with other chronic illness

    DEFF Research Database (Denmark)

    Dam, Henrik; Harhoff, Mette; Andersen, Per Kragh

    2007-01-01

    The prevalence of depression and anxiety is higher in patients with stroke than in the general population but it is unclear whether patients with stroke are at an increased risk of being treated for depression and anxiety compared with patients with other chronic illness. The objective...... of the present study was to investigate whether the rate of treatment with antidepressants is increased in patients with stroke compared with patients with other chronic illness and compared with the general population. By linkage of nationwide case registers, all patients who received a main diagnosis of stroke...

  13. The role of hospitals in bridging the care continuum : A systematic review of coordination of care and follow-up for adults with chronic conditions

    NARCIS (Netherlands)

    De Regge, Melissa; De Pourcq, Kaat; Meijboom, Bert; Trybou, Jeroen; Mortier, Eric; Eeckloo, Kristof

    2017-01-01

    Background: Multiple studies have investigated the outcome of integrated care programs for chronically ill patients. However, few studies have addressed the specific role hospitals can play in the downstream collaboration for chronic disease management. Our objective here is to provide a

  14. Facilitating job retention for chronically ill employees: perspectives of line managers and human resource managers

    Directory of Open Access Journals (Sweden)

    Meerman Martha GM

    2011-05-01

    Full Text Available Abstract Background Chronic diseases are a leading contributor to work disability and job loss in Europe. Recent EU policies aim to improve job retention among chronically ill employees. Disability and occupational health researchers argue that this requires a coordinated and pro-active approach at the workplace by occupational health professionals, line managers (LMs and human resource managers (HRM. Little is known about the perspectives of LMs an HRM on what is needed to facilitate job retention among chronically ill employees. The aim of this qualitative study was to explore and compare the perspectives of Dutch LMs and HRM on this issue. Methods Concept mapping methodology was used to elicit and map statements (ideas from 10 LMs and 17 HRM about what is needed to ensure continued employment for chronically ill employees. Study participants were recruited through a higher education and an occupational health services organization. Results Participants generated 35 statements. Each group (LMs and HRM sorted these statements into six thematic clusters. LMs and HRM identified four similar clusters: LMs and HRM must be knowledgeable about the impact of chronic disease on the employee; employees must accept responsibility for work retention; work adaptations must be implemented; and clear company policy. Thematic clusters identified only by LMs were: good manager/employee cooperation and knowledge transfer within the company. Unique clusters identified by HRM were: company culture and organizational support. Conclusions There were both similarities and differences between the views of LMs and HRM on what may facilitate job retention for chronically ill employees. LMs perceived manager/employee cooperation as the most important mechanism for enabling continued employment for these employees. HRM perceived organizational policy and culture as the most important mechanism. The findings provide information about topics that occupational health

  15. Facilitating job retention for chronically ill employees: perspectives of line managers and human resource managers.

    Science.gov (United States)

    Haafkens, Joke A; Kopnina, Helen; Meerman, Martha G M; van Dijk, Frank J H

    2011-05-17

    Chronic diseases are a leading contributor to work disability and job loss in Europe. Recent EU policies aim to improve job retention among chronically ill employees. Disability and occupational health researchers argue that this requires a coordinated and pro-active approach at the workplace by occupational health professionals, line managers (LMs) and human resource managers (HRM). Little is known about the perspectives of LMs an HRM on what is needed to facilitate job retention among chronically ill employees. The aim of this qualitative study was to explore and compare the perspectives of Dutch LMs and HRM on this issue. Concept mapping methodology was used to elicit and map statements (ideas) from 10 LMs and 17 HRM about what is needed to ensure continued employment for chronically ill employees. Study participants were recruited through a higher education and an occupational health services organization. Participants generated 35 statements. Each group (LMs and HRM) sorted these statements into six thematic clusters. LMs and HRM identified four similar clusters: LMs and HRM must be knowledgeable about the impact of chronic disease on the employee; employees must accept responsibility for work retention; work adaptations must be implemented; and clear company policy. Thematic clusters identified only by LMs were: good manager/employee cooperation and knowledge transfer within the company. Unique clusters identified by HRM were: company culture and organizational support. There were both similarities and differences between the views of LMs and HRM on what may facilitate job retention for chronically ill employees. LMs perceived manager/employee cooperation as the most important mechanism for enabling continued employment for these employees. HRM perceived organizational policy and culture as the most important mechanism. The findings provide information about topics that occupational health researchers and planners should address in developing job retention

  16. Frequency of MMPI Profile Types in Three Chronic Illness Populations.

    Science.gov (United States)

    Naliboff, Bruce D.; And Others

    1983-01-01

    Developed sorting rules to identify Minnesota Multiphasic Personality Inventory configurations and applied these to patients with chronic low back pain, migraine headaches, hypertension, and diabetes (N=157). Results showed that profile types did not differ in frequency among the groups but were more elevated in the back pain patients. (LLL)

  17. Chronic Neurodegenerative Illnesses and Epilepsy in Danish Adventists and Baptists

    DEFF Research Database (Denmark)

    Thygesen, Lau Caspar; Gimsing, Louise Nørreslet; Bautz, Andrea

    2017-01-01

    BACKGROUND: Limited knowledge of the influence of lifestyle risk factors and religious living on chronic neurological diseases exist. Seventh-day Adventists (SDA) do not consume tobacco, alcohol, or pork, and many adhere to lacto-ovo-vegetarian diet, and Baptists discourage excessive use of alcohol...

  18. [The quality of chronic care in Germany].

    Science.gov (United States)

    Fullerton, Birgit; Nolte, Ellen; Erler, Antje

    2011-01-01

    Over the last ten years changes in the legal framework of the German health care system have promoted the development of new health service models to improve chronic care. Recent innovations include the nation-wide introduction of disease management programmes (DMPs), integrated care contracts, community nurse programmes, the introduction of General Practitioner (GP)-centred care contracts, and new opportunities to offer interdisciplinary outpatient care in polyclinics. The aim of this article is to describe the recent developments regarding both the implementation of new health care models by statutory health insurance companies and their evaluation. As part of a European project on the development and validation of disease management evaluation methods (DISMEVAL), we carried out a selective literature search to identify relevant models and evaluation studies. However, on the basis of the currently available evaluation and study results it is difficult to judge whether these developments have actually led to an improvement in the quality of chronic care in Germany. Only for DMPs, evaluation is legally mandatory; its methods are inappropriate, though, for studying the effectiveness of DMPs. Further study results on the effectiveness of DMPs mostly focus on the DMP Diabetes mellitus type II and show consistent improvements regarding process parameters such as regular routine examinations, adherence to treatment guidelines, and quality of life. More research will be needed to determine whether DMPs can also help reduce the incidence of secondary disease and mortality in the long term. Copyright © 2011. Published by Elsevier GmbH.

  19. Changes in case-mix and outcomes of critically ill patients in an Australian tertiary intensive care unit.

    Science.gov (United States)

    Williams, T A; Ho, K M; Dobb, G J; Finn, J C; Knuiman, M W; Webb, S A R

    2010-07-01

    Critical care service is expensive and the demand for such service is increasing in many developed countries. This study aimed to assess the changes in characteristics of critically ill patients and their effect on long-term outcome. This cohort study utilised linked data between the intensive care unit database and state-wide morbidity and mortality databases. Logistic and Cox regression was used to examine hospital survival and five-year survival of 22,298 intensive care unit patients, respectively. There was a significant increase in age, severity of illness and Charlson Comorbidity Index of the patients over a 16-year study period. Although hospital mortality and median length of intensive care unit and hospital stay remained unchanged, one- and five-year survival had significantly improved with time, after adjusting for age, gender; severity of illness, organ failure, comorbidity, 'new' cancer and diagnostic group. Stratified analyses showed that the improvement in five-year survival was particularly strong among patients admitted after cardiac surgery (P = 0.001). In conclusion, although critical care service is increasingly being provided to patients with a higher severity of acute and chronic illnesses, long-term survival outcome has improved with time suggesting that critical care service may still be cost-effectiveness despite the changes in case-mix.

  20. Hospital-Level Care at Home for Acutely Ill Adults: a Pilot Randomized Controlled Trial.

    Science.gov (United States)

    Levine, David M; Ouchi, Kei; Blanchfield, Bonnie; Diamond, Keren; Licurse, Adam; Pu, Charles T; Schnipper, Jeffrey L

    2018-05-01

    Hospitals are standard of care for acute illness, but hospitals can be unsafe, uncomfortable, and expensive. Providing substitutive hospital-level care in a patient's home potentially reduces cost while maintaining or improving quality, safety, and patient experience, although evidence from randomized controlled trials in the US is lacking. Determine if home hospital care reduces cost while maintaining quality, safety, and patient experience. Randomized controlled trial. Adults admitted via the emergency department with any infection or exacerbation of heart failure, chronic obstructive pulmonary disease, or asthma. Home hospital care, including nurse and physician home visits, intravenous medications, continuous monitoring, video communication, and point-of-care testing. Primary outcome was direct cost of the acute care episode. Secondary outcomes included utilization, 30-day cost, physical activity, and patient experience. Nine patients were randomized to home, 11 to usual care. Median direct cost of the acute care episode for home patients was 52% (IQR, 28%; p = 0.05) lower than for control patients. During the care episode, home patients had fewer laboratory orders (median per admission: 6 vs. 19; p Home patients were more physically active (median minutes, 209 vs. 78; p home patients, one occurred in control patients. Median direct cost for the acute care plus 30-day post-discharge period for home patients was 67% (IQR, 77%; p home-care services (22% vs. 55%; p = 0.08) and fewer readmissions (11% vs. 36%; p = 0.32). Patient experience was similar in both groups. The use of substitutive home-hospitalization compared to in-hospital usual care reduced cost and utilization and improved physical activity. No significant differences in quality, safety, and patient experience were noted, with more definitive results awaiting a larger trial. Trial Registration NCT02864420.

  1. Chronotope Disruption as a Sensitizing Concept for Understanding Chronic Illness Narratives

    Science.gov (United States)

    2014-01-01

    Objectives: This article aims to elaborate chronotope disruption —a changed relation to time and space— as a sensitizing concept for understanding chronic illness narratives. Methods: Sixteen men and 16 women with Type 2 diabetes were purposefully sampled. Each was interviewed about his or her experience of diabetes self-management using the biographical-narrative interview method. Transcripts were inspected for key moments defined as emotionally laden stories relevant to the purpose of the research. We present dialogically inflected discursive analysis of exemplar extracts. Results: The analysis demonstrates how the concept of chronotope disruption helps identify, and understand, important aspects of patients’ chronic illness narratives. First, we investigate how medical advice can conflict with embodied experience and how progressive bodily deterioration can provoke a reevaluation of past illness (self-mis)management. Second, the increasing temporal and spatial intrusion of chronic illness into participants’ lives is examined. Finally, we focus on the masquerade of health as an attempt to manage, hide, or deny that one is physically challenged. Conclusions: Chronotope disruption offers a useful sensitizing concept for approaching chronic illness narratives and around which to organize analytical insights and to develop practice. Chronotope analysis fills an important gap in the science through compensating current health sciences’ focus on rationality, cognition, and prospective time (prediction) with a patient-oriented focus on emotionality, embodiment, and retrospective time (nostalgia). Chronotope disruption could be used to develop practice by gaining empathic understanding of patients’ life-worlds and provides a tool to examine how new technologies change the way in which the chronically ill have “being” in the world. PMID:25197985

  2. The Illness Experience: Palliative Care Given the impossibility of Healing.

    Science.gov (United States)

    Dantas, Margarida Maria Florêncio; Amazonas, Maria Cristina Lopes de Almeida

    2016-06-01

    This paper presents a reflection about being terminally ill and the various ways that the subject has at its disposal to deal with this event. The objective is to understand the experience of palliation for patients undergoing no therapeutic possibilities of cure. The methodology of this study has the instruments to semi-structured interview, the participant observation and the field diary, and the Descriptive Analysis of Foucault's inspiration how the narratives of the subjects were perceived. The Results of paper there was the possibility of looking at the experience of illness through the eyes of a subject position assumed by the very sick. As conclusion we have than when choosing palliative care, the terminally ill opts for a way to feel more comfortable and resists the impositions of the medical model of prolonging life. O presente trabalho traz uma reflexão a respeito do ser um doente terminal e das várias maneiras que o sujeito tem a seu dispor para lidar com esse acontecimento. Nosso objetivo foi compreender a experiência da paliação por sujeitos doentes sem possibilidades terapêuticas de cura. A metodologia deste estudo teve como instrumentos a Entrevista Narrativa, a Observação Participante e o Diário de Campo, sendo a Análise Descritiva de inspiração foucaultiana o modo como as narrativas dos sujeitos foram percebidas. O resultado do estudo mostrou a possibilidade de olhar a experiência do adoecer através da ótica de uma posição de sujeito assumida pelo próprio enfermo. E concluímos que ao escolher os cuidados paliativos, o doente terminal opta por um modo de se sentir mais confortável e resiste às imposições do modelo médico de prolongamento da vida.

  3. Paediatric chronic illness and educational failure: the role of emotional and behavioural problems.

    Science.gov (United States)

    Layte, Richard; McCrory, Cathal

    2013-08-01

    Chronic illness in childhood is associated with worse educational outcomes. The association is usually explained via lowered cognitive development, decreased readiness to learn and school absence. However, this paper examines whether worse psychological adjustment may also play a role. We use data from the Growing Up in Ireland study, a cohort study, which collected data on 8,568 nine-year-old children through the Irish national school system using a two-stage sampling method. Maximum likelihood path analytic models are used to assess the direct effect of child chronic illness on reading and maths test scores and the mediating role of emotional and behavioural problems. In unadjusted analyses, children with a mental and behavioural condition scored 14.5 % points less on reading tests and 16.9 % points less on maths tests than their healthy peers. Children with non-mental and behavioural conditions scored 3 % points less on both tests, a significant difference. Mental and behavioural (OR, 9.58) and other chronic conditions (OR, 1.61) were significantly more likely to have 'high' levels of difficulties on the SDQ. Path analysis models showed that the association between chronic illness and educational test scores was completely mediated by emotional and behavioural problems controlling for school absence and bullying by peers. Child and adolescent chronic illness can have significant effects on educational development and a long-lasting impact on future life-chances. The psychological adjustment of the child is important in mediating the effect of chronic illness on educational outcomes. Interventions should target this developmental pathway.

  4. Stakeholders' perception on the organization of chronic care: a SWOT analysis to draft avenues for health care reforms.

    Science.gov (United States)

    Van Durme, Thérèse; Macq, Jean; Anthierens, Sibyl; Symons, Linda; Schmitz, Olivier; Paulus, Dominique; Van den Heede, Koen; Remmen, Roy

    2014-04-18

    Adequate care for individuals living with chronic illnesses calls for a healthcare system redesign, moving from acute, disease-centered to patient-centered models. The aim of this study was to identify Belgian stakeholders' perceptions on the strengths, weaknesses, opportunities and threats of the healthcare system for people with chronic diseases in Belgium. Four focus groups were held with stakeholders from the micro and meso level, in addition to two interviews with stakeholders who could not attend the focus group sessions. Data collection and the discussion were based on the Chronic Care model. Thematic analysis of the transcripts allowed for the identification of the strengths, weaknesses, opportunities and threats of the current health care system with focus on chronic care. Informants stressed the overall good quality of the acute health care system and the level of reimbursement of care as an important strength of the current system. In contrast, the lack of integration of care was identified as one of the biggest weaknesses of today's health care system, along with the unclear definitions of the roles and functions of health professionals involved in care processes. Patient education to support self-management exists for patients with diabetes and/or terminal kidney failure but not for those living with other or multiple chronic conditions. The current overall fee-for-service system is a barrier to integrated care, as are the lack of incentives for integrated care. Attending multidisciplinary meetings, for example, is underfinanced to date. Finally, clinical information systems lack interoperability, which further impedes the information flow across settings and disciplines. Our study's methods allowed for the identification of problematic domains in the health system for people living with chronic conditions. These findings provided useful insights surrounding perceived priorities. This methodology may inspire other countries faced with the challenge of

  5. Stakeholders’ perception on the organization of chronic care: a SWOT analysis to draft avenues for health care reforms

    Science.gov (United States)

    2014-01-01

    Background Adequate care for individuals living with chronic illnesses calls for a healthcare system redesign, moving from acute, disease-centered to patient-centered models. The aim of this study was to identify Belgian stakeholders’ perceptions on the strengths, weaknesses, opportunities and threats of the healthcare system for people with chronic diseases in Belgium. Methods Four focus groups were held with stakeholders from the micro and meso level, in addition to two interviews with stakeholders who could not attend the focus group sessions. Data collection and the discussion were based on the Chronic Care model. Thematic analysis of the transcripts allowed for the identification of the strengths, weaknesses, opportunities and threats of the current health care system with focus on chronic care. Results Informants stressed the overall good quality of the acute health care system and the level of reimbursement of care as an important strength of the current system. In contrast, the lack of integration of care was identified as one of the biggest weaknesses of today’s health care system, along with the unclear definitions of the roles and functions of health professionals involved in care processes. Patient education to support self-management exists for patients with diabetes and/or terminal kidney failure but not for those living with other or multiple chronic conditions. The current overall fee-for-service system is a barrier to integrated care, as are the lack of incentives for integrated care. Attending multidisciplinary meetings, for example, is underfinanced to date. Finally, clinical information systems lack interoperability, which further impedes the information flow across settings and disciplines. Conclusion Our study’s methods allowed for the identification of problematic domains in the health system for people living with chronic conditions. These findings provided useful insights surrounding perceived priorities. This methodology may inspire

  6. PRIMARY PALLIATIVE CARE? - Treating terminally ill cancer patients in the primary care sector

    DEFF Research Database (Denmark)

    Neergaard, Mette Asbjørn; Jensen, Anders Bonde; Olesen, Frede

    BACKGROUND. Palliative care for cancer patients is an important part of a GP's work. Although every GP is frequently involved in care for terminally ill cancer patients, only little is known about how these palliative efforts are perceived by the patients and their families, a knowledge...... that is vital to further improve palliative care in the primary sector.AIM. The aim of the study was to analyse the quality of palliative home care with focus on the GP's role based on evaluations by relatives of recently deceased cancer patients and professionals from both the primary and secondary health care...... approach.RESULTS. The analyses revealed several key areas, e.g.: 1) How to take, give and maintain professional responsibility for palliative home care. 2) A need for transparent communication both among primary care professionals and among professionals across the primary/secondary interface. 3...

  7. "Helping my neighbour is like giving a loan…" -the role of social relations in chronic illness in rural Uganda.

    Science.gov (United States)

    Amurwon, Jovita; Hajdu, Flora; Yiga, Dominic Bukenya; Seeley, Janet

    2017-11-09

    Understanding individuals' experience of accessing care and tending to various other needs during chronic illness in a rural context is important for health systems aiming to increase access to healthcare and protect poor populations from unreasonable financial hardship. This study explored the impact on households of access to free healthcare and how they managed to meet needs during chronic illness. Rich data from the life stories of individuals from 22 households in rural south-western Uganda collected in 2009 were analysed. The data revealed that individuals and households depend heavily on their social relations in order to meet their needs during illness, including accessing the free healthcare and maintaining vital livelihood activities. The life stories illustrated ways in which households draw upon social relations to achieve the broader social protection necessary to prevent expenses becoming catastrophic, but also demonstrated the uncertainty in relying solely on informal relations. Improving access to healthcare in a rural context greatly depends on broader social protection. Thus, the informal social protection that already exists in the form of strong reciprocal social relations must be acknowledged, supported and included in health policy planning.

  8. Effects of loneliness on illness perception in persons with a chronic disease.

    Science.gov (United States)

    Özkan Tuncay, Fatma; Fertelli, Tülay; Mollaoğlu, Mukadder

    2018-04-01

    To determine the effects of loneliness on illness perception in persons with a chronic disease. How an illness is perceived not only affects all dimensions of a person's life but also plays an important role in his/her coping with the complications and consequences of the disease. One of the factors that influence the illness perception is loneliness. The study is a descriptive study. The study sample included 206 individuals over the 18 years of age, conscious, having had a chronic illness at least 1 year, having no communication problems and agreeing to participate in the study after being informed about the study. Data were collected with the Personal Information Form, the Illness Perception Questionnaire and the University of California Los Angeles Loneliness Scale. The forms were administered to the participants in an unoccupied patient room, and the data were collected through face-to-face interviews. The results of the study revealed that individuals with a chronic disease perceived emotional symptoms accompanying the disease more intensely that they accepted their disease was a chronic one and that their personal control and treatment control of the disease were at a middle level. The mean score the participants obtained from the University of California Los Angeles Loneliness Scale was 38.49 ± 11.15. There was a significant negative correlation between this mean score and the mean scores obtained from the following subscales consequences, treatment control, illness perception and emotional representations. In this study, it was concluded that the participants perceived their loneliness level as moderate and that their illness perception was negatively affected as their loneliness levels increased. The knowledge of clinical nurses about perception of patients with chronic illnesses and conditions affecting that perception will enhance compliance with the illness management or treatment strategies. Clinical nurses should observe residents closely for

  9. School Experiences of Siblings of Children with Chronic Illness: A Systematic Literature Review.

    Science.gov (United States)

    Gan, Lucy L; Lum, Alistair; Wakefield, Claire E; Nandakumar, Beeshman; Fardell, Joanna E

    Siblings of children with chronic illness have unique experiences that can affect their school functioning, such that they may miss ongoing periods of school, experience difficulties with schoolwork or experience changes in their peer and teacher interactions. This review provides an overview of these siblings' school experiences. Six databases (Medline, PsychINFO, CINAHL, ERIC, Embase and The Cochrane Library) were systematically searched for studies examining the school experiences and peer relationships of siblings of children with chronic illness, as well as school-based interventions for these siblings. Studies were included if they were published in or after 2000 and were published in English. We identified 2137 articles upon initial search. From these, we identified 28 eligible studies examining the school experiences of >1470 siblings of children with chronic illness. Three key themes were identified throughout the reviewed articles. The literature described 1) the psychological impact on siblings at school; 2) decreases in school attendance and academic functioning, and; 3) changes or perceived differences in peer and teacher interactions. Siblings value teacher and peer support, and this support may contribute to better sibling school functioning. Many siblings are socially resilient, yet overlooked, members of the family who may present with psychological, academic and peer related difficulties at school following diagnosis of a brother or sister with chronic illness. Future research is needed to further delineate the sibling school experience to better facilitate the development of targeted sibling support interventions within the school environment. Copyright © 2016 Elsevier Inc. All rights reserved.

  10. Quality of life and illness perception in working and sick-listed chronic RSI patients

    NARCIS (Netherlands)

    Sluiter, Judith K.; Frings-Dresen, Monique H. W.

    2008-01-01

    OBJECTIVE: To study differences between working and sick-listed chronic repetitive strain injury (RSI) patients in the Netherlands with respect to indices of quality of life and illness perception. METHODS: In a cross-sectional design, one questionnaire was sent to all 3,250 members of the national

  11. Educational Functioning of Children of Parents with Chronic Physical Illness: A Systematic Review

    Science.gov (United States)

    Chen, Cliff Yung-Chi

    2016-01-01

    A systematic review of the literature was performed to answer the question: What are the effects of parental chronic physical illness on children's educational functioning? Thirteen studies that met the inclusion criteria for the purpose of this review were identified, indicating the paucity of research on the topic. The results found that…

  12. A Multi-Modal Digital Game-Based Learning Environment for Hospitalized Children with Chronic Illnesses.

    Science.gov (United States)

    Chin, Jui-Chih; Tsuei, Mengping

    2014-01-01

    The aim of this study was to explore the digital game-based learning for children with chronic illnesses in the hospital settings. The design-based research and qualitative methods were applied. Three eight-year-old children with leukemia participated in this study. In the first phase, the multi-user game-based learning system was developed and…

  13. Anxiety and depression in mothers and fathers of a chronically ill child

    NARCIS (Netherlands)

    van Oers, H. A.; Haverman, L.; Limperg, P. F.; van Dijk-Lokkart, E. M.; Maurice-Stam, H.; Grootenhuis, M. A.

    2014-01-01

    We aimed to determine the levels of anxiety and depression in mothers and fathers of a chronically ill child (0-18 years) and to study which parental and child variables are associated with anxiety and depression. In a cross-sectional design, anxiety and depression were assessed with the Hospital

  14. A Brief Cognitive Behavioural Therapy Psychoeducational Group for Chinese People with Chronic Illnesses: An Evaluation Study

    Science.gov (United States)

    Wong, Daniel F. K.; Ip, Priscilla S. Y.; Lee, Kim Man

    2017-01-01

    This pilot study attempted to examine the effectiveness of a brief cognitive behavioural therapy (CBT) psychoeducational group for Chinese people with chronic illness in Hong Kong. It adopted a single group design, and 52 participants joined the group. A questionnaire with three outcome measures, measuring general mental health, quality of life…

  15. Relation between perceived health and sick leave in employees with a chronic illness

    NARCIS (Netherlands)

    Boot, C.R.L.; Koppes, L.L.J.; Bossche, S.N.J. van den; Anema, J.R.; Beek, A.J. van der

    2011-01-01

    Introduction: To improve work participation in individuals with a chronic illness, insight into the role of work-related factors in the association between health and sick leave is needed. The aim of this study was to gain insight into the contribution of work limitations, work characteristics, and

  16. Psychosocial Adaptation to Chronic Illness and Disability: A Primer for Counselors

    Science.gov (United States)

    Livneh, Hanoch; Antonak, Richard F.

    2005-01-01

    In this article, the authors discuss 3 broad domains of psychosocial adaptation to chronic illness and disability. These include the dynamics (basic concepts, psychosocial responses, and coping strategies) typically associated with the process of adaptation to disabling conditions, assessment of adaptation as evidenced by 6 commonly used measures,…

  17. Introduction to Health Promotion for People with Chronic Illness and Disability

    Science.gov (United States)

    Chan, Fong; Chiu, Chung-Yi; Bezyak, Jill L.; Keegan, John

    2012-01-01

    Health promotion has received increasing attention in rehabilitation counseling research. Health promotion research contributes to theory building and provides the foundation for empirically supported interventions that can improve the health-related quality of life and employment outcomes of people with chronic illness and disability. In this…

  18. Chronic Illness as a Source of Happiness: Paradox or perfectly normal?

    NARCIS (Netherlands)

    Hoppe, S.

    2013-01-01

    In this paper I analyse the relation between happiness and chronic illness from the perspective of medical anthropology and disability studies. By looking at the disability paradox I deconstruct society’s view of people with a disability. I argue that the disability paradox is problematic as it

  19. Chronic Physical Illness and Mental Health in Children. Results from a Large-Scale Population Study

    Science.gov (United States)

    Hysing, Mari; Elgen, Irene; Gillberg, Christopher; Lie, Stein Atle; Lundervold, Astri J.

    2007-01-01

    Background: The aim of the present study was to evaluate the sensitivity and specificity of the Strengths and Difficulties Questionnaire (SDQ) in detecting emotional and behavioural problems among children with chronic illness (CI). Methods: Parents and teachers of a population of primary school children in Norway (n = 9430) completed a…

  20. Personalized and contextualized information in self-management systems for chronically ill patients (PERISCOPE)

    NARCIS (Netherlands)

    Laverman, M.; Schonk, J.H.M.; Boog, P.J.M. van der; Neerincx, M.A.

    2010-01-01

    Motivation - It is becoming necessary to seriously consider self-management in the treatment of chronically ill patients. A number of self-management applications have already been developed, but an explicit theoretical model is lacking. The PERISCOPE-project aims to provide (1) a conceptual

  1. Coping styles and locus of control as predictors for psychological adjustment of adolescents with a chronic illness

    NARCIS (Netherlands)

    Meijer, SA; Sinnema, G; Bijstra, JO; Mellenbergh, GJ; Wolters, WHG

    This study examines the way coping styles and locus of control contribute to the prediction of psychosocial adjustment in adolescents with a chronic illness. Psychosocial adjustment of 84 adolescents aged 13-16 years with a chronic illness was assessed with measures of social adjustment. global

  2. Are We overestimating the prevalence of depression in chronic illness using questionnaires? Meta-analytic evidence in obstructive sleep apnoea

    DEFF Research Database (Denmark)

    Nanthakumar, Shenooka; Bucks, Romola S.; Skinner, Timothy C.

    2016-01-01

    Depression is common in chronic illness, albeit prevalence can be highly variable. This variability may be a function of symptom overlap between depression and chronic illness. Using Obstructive Sleep Apnoea (OSA) as an exemplar, this meta-analysis explored whether the proportion of overlapping s...

  3. Oxidative Stress and Mitochondrial Injury in Chronic Multisymptom Conditions: From Gulf War Illness to Autism Spectrum Disorder

    OpenAIRE

    Beatrice A. Golomb

    2012-01-01

    Background: Overlapping chronic multisymptom illnesses (CMI) include Chronic Fatigue Syndrome (CFS), fibromyalgia, irritable bowel syndrome, multiple chemical sensitivity, and Gulf War illness (GWI), and subsets of autism spectrum disorder (ASD). GWI entails a more circumscribed set of experiences that may provide insights of relevance to overlapping conditions.

  4. Young adult outcomes of children growing up with chronic illness: an analysis of the National Longitudinal Study of Adolescent Health.

    Science.gov (United States)

    Maslow, Gary R; Haydon, Abigail A; Ford, Carol Ann; Halpern, Carolyn Tucker

    2011-03-01

    To examine young adult outcomes in a nationally representative US cohort of young adults growing up with a chronic illness. Secondary analysis of nationally representative data from wave III (in 2001) of the National Longitudinal Study of Adolescent Health. United States. The analytic sample comprised 13 236 young adults aged 18 to 28 years at wave III. Self-report of a chronic physical illness (asthma, cancer, diabetes mellitus, or epilepsy) in adolescence. Respondents with asthma or nonasthmatic chronic illness (cancer, diabetes mellitus, or epilepsy) were compared with individuals without these conditions. Self-report of high school graduation, ever having employment, currently having employment, living with a parent/guardian, and ever receiving public assistance. Three percent of young adults had nonasthmatic chronic illness (cancer, diabetes, or epilepsy), and 16.0% had asthma. Most young adults with chronic illness graduated high school (81.3%) and currently had employment (60.4%). However, compared with healthy young adults, those with nonasthmatic chronic illness were significantly less likely to graduate high school, ever have had employment, or currently have employment and were more likely to receive public assistance. Compared with young adults with asthma, those with nonasthmatic chronic illness again had significantly worse young adult outcomes on all measures. Most young adults growing up with a chronic illness graduate high school and have employment. However, these young adults are significantly less likely than their healthy peers to achieve these important educational and vocational milestones.

  5. In search of attachment: a qualitative study of chronically ill women transitioning between family physicians in rural Ontario, Canada.

    Science.gov (United States)

    Randall, Ellen; Crooks, Valorie A; Goldsmith, Laurie J

    2012-12-23

    Most Canadians receive basic health services from a family physician and these physicians are particularly critical in the management of chronic disease. Canada, however, has an endemic shortage of family physicians. Physician shortages and turnover are particularly acute in rural regions, leaving their residents at risk of needing to transition between family physicians. The knowledge base about how patients manage transitioning in a climate of scarcity remains nascent. The purpose of this study is to explore the experience of transitioning for chronically ill, rurally situated Canadian women to provide insight into if and how the system supports transitioning patients and to identify opportunities for enhancing that support. Chronically ill women managing rheumatic diseases residing in two rural counties in the province of Ontario were recruited to participate in face-to-face, semi-structured interviews. Interview transcripts were analysed thematically to identify emergent themes associated with the transitioning experience. Seventeen women participated in this study. Ten had experienced transitioning and four with long-standing family physicians anticipated doing so soon. The remaining three expressed concerns about transitioning. Thematic analysis revealed the presence of a transitioning trajectory with three phases. The detachment phase focused on activities related to the termination of a physician-patient relationship, including haphazard notification tactics and the absence of referrals to replacement physicians. For those unable to immediately find a new doctor, there was a phase of unattachment during which patients had to improvise ways to receive care from alternative providers or walk-in clinics. The final phase, attachment, was characterized by acceptance into the practice of a new family physician. Participants often found transitioning challenging, largely due to perceived gaps in support from the health care system. Barriers to a smooth transition

  6. Illness and risk behaviour in health care students studying abroad.

    Science.gov (United States)

    Angelin, Martin; Evengård, Birgitta; Palmgren, Helena

    2015-07-01

    The numbers of university students studying abroad increase every year. These students are not tourists as their studies require different types of travel that expose them to different risks. Moreover, health care students (HCSs) may be exposed to even greater risks according to their travel destinations and itineraries. Clearly, research-based pre-travel advice is needed. This study reports on a prospective survey conducted from April 2010 to January 2014 of health care and non-health care students from Swedish universities in Umeå, Stockholm and Gothenburg studying abroad. Of the 393 students included in the study, 85% responded. Over half (55%) were HCSs. Pre-travel health information was received by 79% and information on personal safety by 49% of HCSs. The rate of illness during travel was 52%. Health care students more often travelled to developing regions and were at increased risk for travellers' diarrhoea. One in 10 experienced theft and 3% were involved in traffic accidents. One in five met a new sexual partner during travel and 65% of these practised safe sex. Half of all participants increased their alcohol consumption while abroad; high alcohol consumption was associated with increased risk for being a victim of theft, as well as for meeting a new sexual partner during travel. University authorities are responsible for the safety and well-being of students studying abroad. This study supplies organisers and students with epidemiological data that will help improve pre-travel preparation and increase student awareness of the potential risks associated with studying abroad. © 2015 John Wiley & Sons Ltd.

  7. Psychosocial well-being in young adults with chronic illness since childhood: the role of illness cognitions

    Science.gov (United States)

    2014-01-01

    Background More and more pediatric patients reach adulthood. Some of them are successfully integrating in adult life, but many others are not. Possibly Illness cognitions (IC) - the way people give meaning to their illness/disability – may play a role in individual differences on long-term adjustment. This study explored the association of IC with disease–characteristics and Health Related Quality of Life (HRQoL), anxiety and depression in young adults with a disability benefit due to childhood-onset chronic condition. Methods In a cross-sectional study, young adults (22–31 years, N = 377) who claimed a disability benefit because of a somatic condition since childhood, completed the Illness Cognition Questionnaire (acceptance-helplessness-benefits), RAND-36 (HRQoL) and HADS (anxiety and depression) online. Besides descriptive statistics, linear regression analyses were conducted to predict (1) illness cognitions by age, gender and disease-characteristics, and (2) HRQoL (Mental and Physical Component Scale), Anxiety and Depression by illness cognitions, controlling for disease-characteristics, age and gender. Results Respectively 90.2%, 83.8% and 53.3% of the young adults with a disability benefit experienced feelings of acceptance, benefits and helplessness. Several disease-characteristics were associated with IC. More acceptance and less helplessness were associated with better mental (β = 0.31; β = −0.32) and physical (β = 0.16; β = −0.15) HRQoL and with less anxiety (β = −0.27; β = 0.28) and depression (β = −0.29; β = 0.31). Conclusions IC of young adult beneficiaries were associated with their HRQoL and feelings of anxiety and depression. Early recognition of psychological distress and negative IC might be a key to the identification of pediatric patients at risk for long-term dysfunction. Identification of maladaptive illness cognitions enables the development of psychosocial interventions to optimise

  8. [The hemodialysed patient and his/her family caregiver. Comparison of perceptions of the chronic illness].

    Science.gov (United States)

    Zanini, S; Ajmone, C; Margola, D; Busnach, G; Summa, I; Brunati, C; Cabibbe, M; Dal Col, A; De Ferrari, M E; Macaluso, M

    2006-01-01

    According to health psychology, the family caregiver (fc), i.e. the person who takes care of a hemodialysed patient, plays a pivotal role in coping with dialysis. This study explored and compared the lifestyle and the main needs of a cohort of hemodialysis patients, with reduced personal autonomy, to their fc, evaluating some psychological functional parameters, such as the perception of familial and social support, the psychological quality of life, the disability due to chronic illness, and the communication style. An anonymous multiple versions questionnaire, administered according to the caregiver's family relationship, was given for self assessment to 54 couples of patients and related fc (spouse, son/daughter and brother/sister), mean age 66 and 60, respectively; mean dialytic patients' age: 8 years and 6 months. The questionnaire consisted of three different sections, demographics, renal disease and psychological evaluation, with 4 standard scales (Social Support Satisfaction, Marital Communication, Psychological General Well-Being Index and Evaluation of Needs). A multivariate variance analysis (MANOVA) was subsequently performed. Women have a higher perception of their lifestyle change after dialysis, and, in general, patients communicate more easily with their fc than vice versa. Communication problems are more common in patients with a recent diagnosis. Patients and fc mostly need a better dialogue with their nephrologists and urge some psychological help. The quality of the relationship between physicians, patients and their families is a key element in the process of healing.

  9. Using zero-inflated models to explain chronic illness, pain, and complementary and alternative medicine use.

    Science.gov (United States)

    Ayers, Stephanie L; Kronenfeld, Jennie J

    2011-07-01

    To extend knowledge of complementary and alternative medicine (CAM) use by understanding how poor health influences both trying CAM and number of CAM types used. Using the 2002 National Health Interview Survey's Supplemental Section, zero-inflated models were employed to examine CAM use across 5 domains. Results indicate that level of pain is the only consistent predictor of both the likelihood of trying CAM and how many types of CAM are used. Pain increased the odds ratio and number of CAM types used across all domains. Findings, however, were mixed for health status and chronic conditions. Only prayer was associated with higher odds ratio (OR=1.705, PCAM types used for chronic illnesses (OR=1.024, PCAM use behaviors. Pain is the only consistent predictor of both trying CAM and the number of CAM types used. Chronic illness is only consistently influential for prayer.

  10. Severe mental illness and chronic kidney disease: a cross-sectional study in the United Kingdom

    Directory of Open Access Journals (Sweden)

    Iwagami M

    2018-04-01

    Full Text Available Masao Iwagami,1 Kathryn E Mansfield,1 Joseph F Hayes,2 Kate Walters,3 David PJ Osborn,2,4 Liam Smeeth,1 Dorothea Nitsch,1 Laurie A Tomlinson1 1Department of Non-Communicable Disease Epidemiology, London School of Hygiene and Tropical Medicine, London, UK; 2Division of Psychiatry, University College London, London, UK; 3Department of Primary Care and Population Health, University College London, London, UK; 4Camden and Islington NHS Foundation Trust, London, UK Objective: We investigated the burden of chronic kidney disease (CKD among patients with severe mental illness (SMI. Methods: We identified patients with SMI among all those aged 25–74 registered in the UK Clinical Practice Research Datalink as on March 31, 2014. We compared the prevalence of CKD (two measurements of estimated glomerular filtration rate <60 mL/min/1.73 m2 for ≥3 months and renal replacement therapy between patients with and without SMI. For patients with and without a history of lithium prescription separately, we used logistic regression to examine the association between SMI and CKD, adjusting for demographics, lifestyle characteristics, and known CKD risk factors. Results: The CKD prevalence was 14.6% among patients with SMI and a history of lithium prescription (n = 4,295, 3.3% among patients with SMI and no history of lithium prescription (n = 24,101, and 2.1% among patients without SMI (n = 2,387,988; P < 0.001. The prevalence of renal replacement therapy was 0.23%, 0.15%, and 0.11%, respectively (P = 0.012. Compared to patients without SMI, the fully adjusted odds ratio for CKD was 6.49 (95% CI 5.84–7.21 for patients with SMI and a history of lithium prescription and 1.45 (95% CI 1.34–1.58 for patients with SMI and no history of lithium prescription. The higher prevalence of CKD in patients with SMI may, in part, be explained by more frequent blood testing as compared to the general population. Conclusion: CKD is identified more commonly among

  11. Consumer Health Informatics: Promoting Patient Self-care Management of Illnesses and Health.

    Science.gov (United States)

    Jung, Minsoo

    Consumer health informatics (CHI) is propelling important changes for medical providers and the lives of patients through information and communications technology. Independently, medical consumers seek, collect, and use health information for decision making. However, when constructing a CHI-based medical platform, high technology must be applied in a fully understandable and usable format for both health care providers and consumers. This study examines the present status of CHI and its effect on medical consumers. For the development of CHI, we discuss the need for tailored health communications and capacity building with chronic patients at the medical center. First, empowerment is a key characteristic needed for medical consumer health care management. However, promoting patient self-care management of illnesses and health is necessary to create conjugation where cooperation with medical service providers is possible. Also, establishing a health care delivery system that will support cooperation is necessary. Second, tailored health communications can uniquely construct the health information of patients, which prevents unnecessary or excessive information from leading patients to confused and inappropriate decisions. Ultimately, through the present environment of health communication, the innovation of a consumer health care information system has become the tide of the times and the positive effect of improved health can be expected.

  12. Acute versus primary care: the health care decision making process for individuals with severe mental illness.

    Science.gov (United States)

    Decoux, Michelle

    2005-11-01

    This study's purpose was to determine factors influencing treatment choices of individuals with severe mental illness (SMI). The sample was drawn from admissions to residential crisis programs in San Francisco. Inclusion criteria were an Axis I and Axis III disorder. This qualitative study utilized grounded theory method. Interviews and field notes were coded for recurring themes. Descriptive data were also collected. Participants revealed that the most important influences on treatment decisions were immediate need for care, the belief that their subacute complaints will not be taken seriously by providers, positive reinforcement for emergency service use, and enabling factors such as insurance coverage. Other remarkable findings included: numerous reports of substance induced medical crises, lack of support from family, and unawareness of client's medical conditions in psychiatric facilities. Health care seeking behaviors are learned and learning that will promote the use of outpatient services in SMI must include positive experiences in the delivery of care in the primary care setting. Participants were knowledgeable regarding their illnesses and able to articulate symptoms of illness well. Failure to communicate symptoms appeared to reflect the participant's perception of a lack of response to their reports.

  13. The Role of Hope for Adolescents with a Chronic Illness: An Integrative Review.

    Science.gov (United States)

    Griggs, Stephanie; Walker, Rachel K

    2016-01-01

    Hope is a human strength essential for adolescents' enduring and coping with chronic illness however, the role of hope is not well understood in this population. This integrative review describes what is currently known about the role of hope in adolescents with a chronic illness. A methodological review using an integrative approach by R. Whittemore and K. Knafl (2005) was performed. MEDLINE via Pubmed; CINAHL; PyscINFO and Google scholar were searched for articles published in peer-reviewed journals from 1995 to 2015, using search terms 'hope and chronic illness' with age limiters for all except Google scholar (title search of "hope and adolescents"). Of the 197 studies initially retrieved: a total of 27 quantitative studies, 8 qualitative studies and 19 theoretical works were selected for review. Seven themes emerged including that hope: (i) promotes health (ii) facilitates coping and adjustment, (iii) enhances quality of life, (iv) is essential in purpose in life and illness (v) improves self-esteem, (vi) is an important factor in resilience and (vii) affects maturation. Persons reporting higher levels of hope find multiple routes to goals, view setbacks as challenges, and better manage psychological symptoms. Although theory and a limited body of empirical research to date suggest a link between hopeful thinking and physical health, the specific mechanisms remain unclear. As hope is linked to resilience, further research should explore whether adolescents with higher hope return to baseline faster than their lower hope counterparts. Copyright © 2016 Elsevier Inc. All rights reserved.

  14. Care Management Processes Used Less Often For Depression Than For Other Chronic Conditions In US Primary Care Practices.

    Science.gov (United States)

    Bishop, Tara F; Ramsay, Patricia P; Casalino, Lawrence P; Bao, Yuhua; Pincus, Harold A; Shortell, Stephen M

    2016-03-01

    Primary care physicians play an important role in the diagnosis and management of depression. Yet little is known about their use of care management processes for depression. Using national survey data for the period 2006-13, we assessed the use of five care management processes for depression and other chronic illnesses among primary care practices in the United States. We found significantly less use for depression than for asthma, congestive heart failure, or diabetes in 2012-13. On average, practices used fewer than one care management process for depression, and this level of use has not changed since 2006-07, regardless of practice size. In contrast, use of diabetes care management processes has increased significantly among larger practices. These findings may indicate that US primary care practices are not well equipped to manage depression as a chronic illness, despite the high proportion of depression care they provide. Policies that incentivize depression care management, including additional quality metrics, should be considered. Project HOPE—The People-to-People Health Foundation, Inc.

  15. Guidelines for the Gamification of Self-Management of Chronic Illnesses: Multimethod Study.

    Science.gov (United States)

    AlMarshedi, Alaa; Wills, Gary; Ranchhod, Ashok

    2017-05-12

    Gamification is the use of game elements and techniques in nongaming contexts. The use of gamification in health care is receiving a great deal of attention in both academic research and the industry. However, it can be noticed that many gamification apps in health care do not follow any standardized guidelines. This research aims to (1) present a set of guidelines based on the validated framework the Wheel of Sukr and (2) assess the guidelines through expert interviews and focus group sessions with developers. Expert interviews (N=6) were conducted to assess the content of the guidelines and that they reflect the Wheel of Sukr. In addition, the guidelines were assessed by developers (N=15) in 5 focus group sessions, where each group had an average of 3 developers. The guidelines received support from the experts. By the end of the sixth interview, it was determined that a saturation point was reached. Experts agreed that the guidelines accurately reflect the framework the Wheel of Sukr and that developers can potentially use them to create gamified self-management apps for chronic illnesses. Moreover, the guidelines were welcomed by developers who participated in the focus group sessions. They found the guidelines to be clear, useful, and implementable. Also, they were able to suggest many ways of gamifying a nongamified self-management app when they were presented with one. The findings suggest that the guidelines introduced in this research are clear, useful, and ready to be implemented for the creation of self-management apps that use the notion of gamification as described in the Wheel of Sukr framework. The guidelines are now ready to be practically tested. Further practical studies of the effectiveness of each element in the guidelines are to be carried out. ©Alaa AlMarshedi, Gary Wills, Ashok Ranchhod. Originally published in JMIR Serious Games (http://games.jmir.org), 12.05.2017.

  16. The eHealth Enhanced Chronic Care Model: a theory derivation approach.

    Science.gov (United States)

    Gee, Perry M; Greenwood, Deborah A; Paterniti, Debora A; Ward, Deborah; Miller, Lisa M Soederberg

    2015-04-01

    Chronic illnesses are significant to individuals and costly to society. When systematically implemented, the well-established and tested Chronic Care Model (CCM) is shown to improve health outcomes for people with chronic conditions. Since the development of the original CCM, tremendous information management, communication, and technology advancements have been established. An opportunity exists to improve the time-honored CCM with clinically efficacious eHealth tools. The first goal of this paper was to review research on eHealth tools that support self-management of chronic disease using the CCM. The second goal was to present a revised model, the eHealth Enhanced Chronic Care Model (eCCM), to show how eHealth tools can be used to increase efficiency of how patients manage their own chronic illnesses. Using Theory Derivation processes, we identified a "parent theory", the Chronic Care Model, and conducted a thorough review of the literature using CINAHL, Medline, OVID, EMBASE PsychINFO, Science Direct, as well as government reports, industry reports, legislation using search terms "CCM or Chronic Care Model" AND "eHealth" or the specific identified components of eHealth. Additionally, "Chronic Illness Self-management support" AND "Technology" AND several identified eHealth tools were also used as search terms. We then used a review of the literature and specific components of the CCM to create the eCCM. We identified 260 papers at the intersection of technology, chronic disease self-management support, the CCM, and eHealth and organized a high-quality subset (n=95) using the components of CCM, self-management support, delivery system design, clinical decision support, and clinical information systems. In general, results showed that eHealth tools make important contributions to chronic care and the CCM but that the model requires modification in several key areas. Specifically, (1) eHealth education is critical for self-care, (2) eHealth support needs to be

  17. Self-care follows from compassionate care - chronic pain patients' experience of integrative rehabilitation.

    Science.gov (United States)

    Arman, Maria; Hök, Johanna

    2016-06-01

    The long-term outcome of any intervention for people suffering from chronic pain relies on the patient's ability for self-care. This study explores patient experiences of self-care in relation to a rehabilitation programme at an anthroposophic clinic. In a qualitative interview study with a hermeneutic approach, individual interviews were conducted, recorded, transcribed verbatim and analysed. Interviews were conducted with ten women who were taking part in a year-long rehabilitation programme for chronic pain and overlapping illness. The women told stories of suffering with a focus on lives that were not functioning well. In this context, pain is like secondary. For many, the experience of loving care at the clinic became a turning point, a chance to be vulnerable, to be recognised, to reflect and to begin life anew. Signs of self-care could then be witnessed. The women described a process whereby they regained contact with their bodies and their fellow human beings; they were able to identify their needs and when to stand up for them. Everyday life at the clinic is guided by universal aspects of love, life and meanings. The care gives patients glimpses of a move towards community in contrast to past isolation, towards love in contrast to past alienation, and towards joy and inspiration in contrast to past suffering. Through receiving caritative and compassionate care, these women were able to identify their needs as a first step towards self-care. In the context of chronic pain, self-care needs to be more than advice, education and training. Health can be attained when the sufferer experiences what it is to be cared for. This study supports the potential of a caritative caring culture to help patients participate in a compassionate community both with others and with the self. This forms the basis for the reawakening of their natural self-care ability. © 2015 The Authors. Scandinavian Journal of Caring Sciences published by John Wiley & Sons Ltd on behalf of

  18. Diabetes care and mental illness: the social organization of food in a residential care facility.

    Science.gov (United States)

    Lowndes, Ruth H; Angus, Jan E; Peter, Elizabeth

    2013-06-21

    To explore the social organization of food provision and dietary intake in seriously mentally ill people with diabetes who reside in a for-profit group home. Institutional ethnography was used to explore diabetes-related care practices among 26 women in a rural residential care facility in southern Ontario. Semi-structured, in-depth interviews were conducted with residents with diabetes, care providers, field workers, and health professionals. Observations and document analysis were also used to understand the lack of congruence between diabetes guidelines and the possibilities for diabetes management within the confines of group home care. Although it was mandated in group home guidelines that "Health Canada's Eating Well with Canada's Food Guide" (2007) be followed, menus were planned within the context of a limited food budget of approximately $1.91 per day per resident. Group home policies regulated systems of safety, reporting, and financial accountability, but not health promotion. Inspections carried out by the Public Health Department focused primarily on food safety during handling, preparation, and storage, and compliance to regulations regarding environmental cleanliness and infection control. Resource rationing found in group home care exacerbates illness in an already marginalized group. Financial support is required to enable provision of healthy food choices, including dairy products, fresh fruits, and vegetables. Additional support is required for care of co-morbid conditions such as diabetes for associated food costs and education to improve outcomes. Group home policies must take into consideration health threats to this population and give primacy to health promotion and illness prevention.

  19. Heart transplant centers with multidisciplinary team show a higher level of chronic illness management - Findings from the International BRIGHT Study.

    Science.gov (United States)

    Cajita, Maan Isabella; Baumgartner, Eva; Berben, Lut; Denhaerynck, Kris; Helmy, Remon; Schönfeld, Sandra; Berger, Gabriele; Vetter, Christine; Dobbels, Fabienne; Russell, Cynthia L; De Geest, Sabina

    The objectives of this study were to: (1) explore the proportion of HTx centers that have a multidisciplinary team and (2) assess the relationship between multidisciplinarity and the level of chronic illness management (CIM). The International Society for Heart and Lung Transplantation (ISHLT) recommends a multidisciplinary approach in heart transplant (HTx) follow-up care but little is known regarding the proportion of HTx centers that meet this recommendation and the impact on patient care. HTx centers with a multidisciplinary team may offer higher levels of CIM, a care model that has the potential to improve outcomes after HTx. We conducted a secondary analysis of the BRIGHT study, a cross-sectional study in 11 countries. Multidisciplinarity in the 36 HTx centers was assessed through HTx director reports and was defined as having a team that was composed of physician(s), nurse(s), and another healthcare professional (either a social worker, psychiatrist, psychologist, pharmacist, dietician, physical therapist, or occupational therapist). CIM was assessed with the Patient Assessment of Chronic Illness Care (PACIC). Multiple linear regression assessed the relationship between multidisciplinarity and the level of CIM. Twenty-nine (80.6%) of the HTx centers had a multidisciplinary team. Furthermore, multidisciplinarity was significantly associated with higher levels of CIM (β = 5.2, P = 0.042). Majority of the HTx centers follows the ISHLT recommendation for a multidisciplinary approach. Multidisciplinarity was associated with CIM and point toward a structural factor that needs to be in place for moving toward CIM. Copyright © 2017 Elsevier Inc. All rights reserved.

  20. Alberta's systems approach to chronic disease management and prevention utilizing the expanded chronic care model.

    Science.gov (United States)

    Delon, Sandra; Mackinnon, Blair

    2009-01-01

    Alberta's integrated approach to chronic disease management programming embraces client-centred care, supports self-management and facilitates care across the continuum. This paper presents strategies implemented through collaboration with primary care to improve care of individuals with chronic conditions, evaluation evidence supporting success and lessons learned from the Alberta perspective.

  1. 'Intensive care unit survivorship' - a constructivist grounded theory of surviving critical illness.

    Science.gov (United States)

    Kean, Susanne; Salisbury, Lisa G; Rattray, Janice; Walsh, Timothy S; Huby, Guro; Ramsay, Pamela

    2017-10-01

    To theorise intensive care unit survivorship after a critical illness based on longitudinal qualitative data. Increasingly, patients survive episodes of critical illness. However, the short- and long-term impact of critical illness includes physical, psychological, social and economic challenges long after hospital discharge. An appreciation is emerging that care needs to extend beyond critical illness to enable patients to reclaim their lives postdischarge with the term 'survivorship' being increasingly used in this context. What constitutes critical illness survivorship has, to date, not been theoretically explored. Longitudinal qualitative and constructivist grounded theory. Interviews (n = 46) with 17 participants were conducted at four time points: (1) before discharge from hospital, (2) four to six weeks postdischarge, (3) six months and (4) 12 months postdischarge across two adult intensive care unit setting. Individual face-to-face interviews. Data analysis followed the principles of Charmaz's constructivist grounded theory. 'Intensive care unit survivorship' emerged as the core category and was theorised using concepts such as status passages, liminality and temporality to understand the various transitions participants made postcritical illness. Intensive care unit survivorship describes the unscheduled status passage of falling critically ill and being taken to the threshold of life and the journey to a life postcritical illness. Surviving critical illness goes beyond recovery; surviving means 'moving on' to life postcritical illness. 'Moving on' incorporates a redefinition of self that incorporates any lingering intensive care unit legacies and being in control of one's life again. For healthcare professionals and policymakers, it is important to realise that recovery and transitioning through to survivorship happen within an individual's time frame, not a schedule imposed by the healthcare system. Currently, there are no care pathways or policies in

  2. Chronically ill Canadians' experiences of being unattached to a family doctor: a qualitative study of marginalized patients in British Columbia.

    Science.gov (United States)

    Crooks, Valorie A; Agarwal, Gina; Harrison, Angela

    2012-07-16

    Unattached patients do not have a regular primary care provider. Initiatives are being developed to increase attachment rates across Canada. Most existing attention paid to patient unattachment has focused on quantifying the problem and health system costs. Our purpose is to qualitatively identify the implications of chronically ill patients' experiences of unattachment for health policy and planning to provide policy-relevant insights for Canadian attachment initiatives. Three focus groups were conducted with marginalized chronically ill individuals residing in a mid-sized city in British Columbia who are unattached to a family doctor. We use the term marginalized as a descriptor to acknowledge that by virtue of their low socio-economic status and lack of attachment the participants are marginalized in Canada's health care system Focus groups were structured as an open conversation organized around a series of probing questions. They were digitally recorded and transcribed verbatim. Thematic analysis was employed. Twenty-six individuals participated in the focus groups. The most common chronic illnesses reported were active drug addiction or recovery (and their associated symptoms), depression, arthritis, and hepatitis C. Participants identified life transitions as being the root cause for not having a family doctor. There was a strong sense that unsuccessful attempts to get a family doctor reflected that they were undesirable patients. Participants wanted to experience having a trusting relationship with a regular family doctor as they believed it would encourage greater honesty and transparency. One of the main health concerns regarding lack of access to a regular family doctor is that participants lacked access to preventative care. Participants were also concerned about having a discontinuous medical record due to unattachment. Participants perceived that there are many benefits to be had by having attachment to a regular family doctor and that experiencing

  3. Chronically ill Canadians’ experiences of being unattached to a family doctor: a qualitative study of marginalized patients in British Columbia

    Directory of Open Access Journals (Sweden)

    Crooks Valorie A

    2012-07-01

    Full Text Available Abstract Background Unattached patients do not have a regular primary care provider. Initiatives are being developed to increase attachment rates across Canada. Most existing attention paid to patient unattachment has focused on quantifying the problem and health system costs. Our purpose is to qualitatively identify the implications of chronically ill patients’ experiences of unattachment for health policy and planning to provide policy-relevant insights for Canadian attachment initiatives. Methods Three focus groups were conducted with marginalized chronically ill individuals residing in a mid-sized city in British Columbia who are unattached to a family doctor. We use the term marginalized as a descriptor to acknowledge that by virtue of their low socio-economic status and lack of attachment the participants are marginalized in Canada’s health care system Focus groups were structured as an open conversation organized around a series of probing questions. They were digitally recorded and transcribed verbatim. Thematic analysis was employed. Results Twenty-six individuals participated in the focus groups. The most common chronic illnesses reported were active drug addiction or recovery (and their associated symptoms, depression, arthritis, and hepatitis C. Participants identified life transitions as being the root cause for not having a family doctor. There was a strong sense that unsuccessful attempts to get a family doctor reflected that they were undesirable patients. Participants wanted to experience having a trusting relationship with a regular family doctor as they believed it would encourage greater honesty and transparency. One of the main health concerns regarding lack of access to a regular family doctor is that participants lacked access to preventative care. Participants were also concerned about having a discontinuous medical record due to unattachment. Conclusions Participants perceived that there are many benefits to be had

  4. Sarcopenia in cases of chronic and acute illness. A mini-review.

    Science.gov (United States)

    Dovjak, Peter

    2016-02-01

    Loss of muscle mass and muscle weakness are often found in cases of acute or chronic illness in elderly patients. Sarcopenia is a risk factor for complications and higher mortality. Based on an exact diagnosis and knowledge of the risk factors for developing sarcopenia, it is now possible to improve the prognosis by providing effective treatment options. This review was carried out based on a PubMed search in the period from 1998 to 2015 using original articles and reviews and posting the terms "sarcopenia", "elderly" and "acute illness". Given the evidence from the current literature, in the case of acute illness it is feasible to identify patients at risk, diagnose sarcopenia and prescribe a multidimensional treatment program to prevent or treat sarcopenia even in the bustling environment of geriatric wards or institutions.

  5. From Jollibee to BeeBee: "lifestyle" and chronic illness in Southeast Asia.

    Science.gov (United States)

    Manderson, Lenore; Naemiratch, Bhensri

    2010-07-01

    Throughout Southeast Asia, the number of people living with chronic conditions and degenerative disease has increased proportionately and absolutely. Public health interventions and effective medical treatment and surgeries have increased life expectancy. Concurrently, social and economic conditions have led to the rapid escalation of lifelong illnesses, characterized as "lifestyle" conditions. Drawing on ethnographic and survey research conducted in Southeast Asia, the authors illustrate the multiple factors contributing to people's health. Changes in food production; the organization, nature, and conditions of work; living conditions; and other factors affecting contemporary living increase vulnerability to noncommunicable diseases. These factors are largely beyond the control of most people. Efforts to reduce chronic illnesses predominantly focus on individual interventions, overlooking the lack of individual capacity to address the structural and institutional factors that compromise people's health.

  6. No increased risk of developing depression in diabetes compared to other chronic illness

    DEFF Research Database (Denmark)

    Kessing, Lars Vedel; Nilsson, Flemming Mørkeberg; Siersma, Volkert

    2003-01-01

    of patients. There was no difference in the risk for Type 1 and Type 2 diabetes. It is concluded that older patients with diabetes do not seem to have an increased risk of developing severe depression compared with patients with other chronic illness.......Several studies have found that the prevalence of depression in patients with diabetes is higher than in the general population but it is unclear whether patients with diabetes have an increased risk of developing depression compared with patients with other chronic illnesses. In a nationwide case...... register study, all patients who had a discharge diagnosis of diabetes or of osteoarthritis at first admission in a period from 1977 to 1997 were identified. The probability of being readmitted and discharged with a diagnosis of depression was estimated with competing risks models in survival analysis...

  7. Changes in eating pathology and associated symptoms among chronically ill adults attending a brief psychoeducational group.

    Science.gov (United States)

    von Ranson, Kristin M; Stevenson, Andrea S; Cannon, Colleen K; Shah, Wendy

    2010-08-01

    Two quasi-experimental pilot studies examined eating pathology, eating self-efficacy, shame, guilt, and pride in adults with chronic illness before and after participating in brief cognitive-behavioral psychoeducational groups addressing eating concerns. In Study 1, 60 adults completed assessments before and after a series of two groups; in Study 2, 21 adults also completed an assessment five weeks prior to the first group to identify time-related changes in symptoms. Study 1 participants improved across domains, whereas Study 2 analyses also examining time-related changes showed improvements in eating self-efficacy, shame, guilt, and pride, but not in eating pathology. Psychoeducational groups may help improve symptoms including eating pathology, eating self-efficacy, shame, guilt, and pride among chronically-ill adults with eating concerns. 2009 Elsevier Ltd. All rights reserved.

  8. Psychometric Properties of the Self-Perception Profile for Children in Children with Chronic Illness.

    Science.gov (United States)

    Ferro, Mark A; Tang, Jennie

    2017-07-01

    The Self-Perception Profile for Children (SPPC) is a commonly used measure of self-concept in children, but little research has examined its psychometric properties in children newly-diagnosed with chronic illness. Confirmatory factor analysis and examination of reliability and convergent and discriminant validity of the SPPC was conducted in 31 children newly-diagnosed with asthma, diabetes, epilepsy, food allergy, or juvenile arthritis. The unidimensionality of each domain of the SPPC was confirmed, internal reliability was robust (α=.83-.95), and inter-domain polychoric correlations ranged from weak to strong (ρ=.05-.85) Convergent validity was demonstrated with measures of global self-concept and domains of quality of life. The Global Self-worth domain showed discriminant validity between children with and without comorbid mental disorder. Findings extend the psychometric properties of the SPPC as a valid and reliable scale in children newly-diagnosed with chronic illness.

  9. Feasibility of a transition intervention aimed at adolescents with chronic illness

    DEFF Research Database (Denmark)

    Hanghøj, Signe; Boisen, Kirsten A; Schmiegelow, Kjeld

    2018-01-01

    BACKGROUND: International guidelines recommend planned and structured transition programmes for adolescents with chronic illness because inadequate transition may lead to poor disease control and risk of lacking outpatient follow-up. OBJECTIVE: To investigate the feasibility of a transition...... intervention. Reasons for decline and drop-outs were calculated. Adolescents' experiences of advantages and disadvantages of participating and reasons for no-shows were investigated through focus groups and telephone interviews, which were analysed using thematic analysis. RESULTS: One hundred and twenty...

  10. Psychological interventions for parents of children and adolescents with chronic illness

    OpenAIRE

    Eccleston, Chris; Palermo, T M; Fisher, Emma; Law, E

    2012-01-01

    Psychological therapies have been developed for parents of children and adolescents with a chronic illness. Such therapies include parent only or parent and child/adolescent, and are designed to treat parent behaviour, parent mental health, child behaviour/disability, child mental health, child symptoms and/or family functioning. No comprehensive, meta-analytic reviews have been published in this area. To evaluate the effectiveness of psychological therapies that include coping strategies for...

  11. Peer Attachment, Perceived Parenting Style, Self-concept, and School Adjustments in Adolescents with Chronic Illness

    OpenAIRE

    Jeong-Ah Ahn, PhD, RN; Sunhee Lee, PhD, RN

    2016-01-01

    Purpose: The purpose of this study was to identify how peer attachment and parenting style differentially affect self-concept and school adjustment in adolescents with and without chronic illness. Methods: A cross-sectional study using multiple group analysis on the Korean panel data was used. A nationwide stratified multistage cluster sampling method was used and the survey was conducted in 2013 on 2,092 first-year middle school students in Korea. We used standardized instruments by the N...

  12. Vitamin D deficiency in children with chronic illnesses: Predisposing and protecting factors

    OpenAIRE

    Koskivirta, Panu

    2011-01-01

    This thesis assesses clinical differences in patients with low and high vitamin D levels. The factors analyzed included the underlying disease, body size, age, ethnic background, use of vitamin D supplements and the season when the blood sample was taken. Fifty patients with the lowest and 50 patients with the highest vitamin D concentrations were selected from a cohort of 1351 chronically ill children and adolescents who had had their vitamin D status assessed at Children's Hospital. Protect...

  13. Work right to right work: An automythology of chronic illness and work.

    Science.gov (United States)

    Vijayasingham, Lavanya

    2018-03-01

    Objectives Chronic illness is known to disrupt and redirect the usual course of work trajectories. This article aims to portray the longitudinal course of negotiating work after multiple sclerosis. Methods Using therapy and personal journals to reconstruct memories and experience, an autoethnography is produced and narrated within Campbell's "Hero's Journey" automythology framework. Results The narrative highlights the intrasubjectivity of illness meaning-the changing internal meaning-making and external behavior and decision-making dynamics. The journey of being inhibited to "Work Right", to "Looking for the Right" and ultimately, finding "Right Work" is charted; portrayed as a bittersweet maneuver to achieve work-illness equilibrium. Discussion This journey traverses a spectrum of negative coping-the exhibition of deviant work behaviors, disengagement and depression; to recalibration and renewal; culminating in living the "new normal", and finding moral and meaningful work engagements. Life trajectories with chronic illness are often skewed and redirected; but longitudinal narratives of normalization and coping also highlight the pursuits to secure and maintain a life of meaning and value.

  14. Are children with chronic illnesses requiring dietary therapy at risk for disordered eating or eating disorders? A systematic review.

    Science.gov (United States)

    Conviser, Jenny H; Fisher, Sheehan D; McColley, Susanna A

    2018-03-01

    Pediatric chronic illnesses (CI) can affect a child's mental health. Chronic illnesses with treatment regimens that specify a therapeutic diet may place the child at increased risk for disordered eating and specific eating disorders (ED). The aim of this review is to examine the relation between diet-treated CI and disordered eating and to determine the order of onset to infer directionality. Diet-treated CI is hypothesized to precede and to be associated with disordered eating. A comprehensive search of empirical articles that examine the relation between diet-treated CI (diabetes, cystic fibrosis, celiac disease, gastrointestinal disorders, and inflammatory bowel diseases) and disordered eating was conducted in Medline and PsycINFO using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A table of the sample's characteristics, ED measures, major pertinent findings, and the onset of CI in relation to ED were provided. Diet-treated CI was associated with disordered eating and ED. Diet-treated CI had onset prior to disordered eating in most studies, except for inflammatory bowel diseases. Disordered eating and unhealthy weight management practices put children at risk for poor medical outcomes. Interventions for diet-treated CI require a focus on diet and weight, but may increase the risk for disordered eating. Future research is needed to elucidate the mechanisms that transform standard treatment practices into pathological eating, including characteristics and behaviors of the child, parents/care providers, family, and treatment providers. © 2018 Wiley Periodicals, Inc.

  15. Chronically ill patients’ expectations of therapeutic education and their health locus of control

    Directory of Open Access Journals (Sweden)

    Małgorzata Anna Basińska

    2015-12-01

    Full Text Available Background Beliefs as cognitive components of personality indicate what we consider as true or false and help us to answer questions concerning others, the world surrounding us and situations that we encounter. Beliefs about the health locus of control and their relations with expectations pertaining to therapeutic education seem to be of vital importance in the case of occurrence of a chronic illness. The aim of this paper is to verify whether expectations concerning therapeutic education in chronically ill patients demonstrate a relation with beliefs about the health locus of control and whether they vary according to gender, age and health, and to present the results of research that applies the Polish OE-15 scale for the evaluation of therapeutic education expectations depending on the health condition. Participants and procedure Two hundred and ninety-one persons were examined, including 180 patients and 111 healthy controls (the control group, 187 women and 104 men. The average age of subjects was 45.71 (SD = 13.51 years, ranging from 21 to 80 years. The OE-15 Therapeutic Education Expectations Scale and the Multidimensional Health Locus of Control Scale in versions relevant for patients and healthy controls as well as demographics were used. Results Age, gender and beliefs about the health locus of control are related to expectations of therapeutic education. Conclusions When providing therapeutic education for chronically ill patients, one should assess their expectations and pay attention to patients’ beliefs about the health locus of control.

  16. Facial emotion recognition in Chinese with schizophrenia at early and chronic stages of illness.

    Science.gov (United States)

    Leung, Joey Shuk-Yan; Lee, Tatia M C; Lee, Chi-Chiu

    2011-12-30

    Deficits in facial emotion recognition have been recognised in Chinese patients diagnosed with schizophrenia. This study examined the relationship between chronicity of illness and performance of facial emotion recognition in Chinese with schizophrenia. There were altogether four groups of subjects matched for age and gender composition. The first and second groups comprised medically stable outpatients with first-episode schizophrenia (n=50) and their healthy controls (n=26). The third and fourth groups were patients with chronic schizophrenic illness (n=51) and their controls (n=28). The ability to recognise the six prototypical facial emotions was examined using locally validated coloured photographs from the Japanese and Caucasian Facial Expressions of Emotion. Chinese patients with schizophrenia, in both the first-episode and chronic stages, performed significantly worse than their control counterparts on overall facial emotion recognition, (Pemotion did not appear to have worsened over the course of disease progression, suggesting that recognition of facial emotion is a rather stable trait of the illness. The emotion-specific deficit may have implications for understanding the social difficulties in schizophrenia. Copyright © 2011 Elsevier Ltd. All rights reserved.

  17. Anticipated stigma and quality of life among people living with chronic illnesses.

    Science.gov (United States)

    Earnshaw, Valerie A; Quinn, Diane M; Park, Crystal L

    2012-06-01

    We examined the process by which anticipated stigma relates to quality of life among people living with chronic illnesses. We hypothesized that stress, social support and patient satisfaction mediate the relationships between three sources of anticipated stigma and quality of life. Data were collected from adults living with chronic illnesses recruited from support groups and online communities, and were analysed with path analysis. Results demonstrated that stress mediated the relationships between anticipated stigma from friends and family, and work colleagues with quality of life; social support mediated the relationships between anticipated stigma from friends and family, and work colleagues with quality of life; and patient satisfaction mediated the relationship between anticipated stigma from healthcare providers with quality of life. The final path model fit the data well (χ (2) (8) = 8.66, p = 0.37; RMSEA = 0.02; CFI = 0.99; SRMR = 0.03), and accounted for 60% of the variance in participants' quality of life. This work highlights potential points of intervention to improve quality of life. It calls attention to the importance of differentiating between sources of anticipated stigma in clinical settings, interventions and research involving people living with chronic illnesses.

  18. Swedish District Nurses' experiences on the use of information and communication technology for supporting people with serious chronic illness living at home--a case study.

    Science.gov (United States)

    Nilsson, Carina; Skär, Lisa; Söderberg, Siv

    2010-06-01

    The aim of this case study was to describe two District Nurses' (DN) experiences of using information and communication technology (ICT) to communicate with chronically ill people in their homes. An electronic messaging program via computers and mobile phones with an Internet connection was used, enabling DNs and the ill people to exchange messages to and from anywhere. The program comprised different virtual rooms, and communication was via text messages. The DNs in this study used the program two to four times each week from November 2003 to March 2004. Semi-structured interviews were performed before, during and after the implementation of the new technology and were analysed using thematic content analysis. The results showed that the DNs felt that the technology increased accessibility to nursing care through a more direct communication with the ill person meaning that a more trusting relationship could be created. The DNs also experienced that the use of ICT saved working time. This study indicates that the use of ICT for communication allowed the DN to better support a chronically ill person at home leading to improved home nursing care. This method of communication cannot replace physical presence, but can be seen as a complement to nursing care at home.

  19. Psychological interventions for parents of children and adolescents with chronic illness.

    Science.gov (United States)

    Eccleston, Christopher; Palermo, Tonya M; Fisher, Emma; Law, Emily

    2012-08-15

    Psychological therapies have been developed for parents of children and adolescents with a chronic illness. Such therapies include parent only or parent and child/adolescent, and are designed to treat parent behaviour, parent mental health, child behaviour/disability, child mental health, child symptoms and/or family functioning. No comprehensive, meta-analytic reviews have been published in this area. To evaluate the effectiveness of psychological therapies that include coping strategies for parents of children/adolescents with chronic illnesses (painful conditions, cancer, diabetes mellitus, asthma, traumatic brain injury, inflammatory bowel diseases, skin diseases or gynaecological disorders). The therapy will aim to improve parent behaviour, parent mental health, child behaviour/disability, child mental health, child symptoms and family functioning. We searched CENTRAL, MEDLINE, EMBASE and PsycINFO for randomised controlled trials (RCTs) of psychological interventions that included parents of children and adolescents with a chronic illness. The initial search was from inception of these databases to June 2011 and we conducted a follow-up search from June 2011 to March 2012. We identified additional studies from the reference list of retrieved papers and from discussion with investigators. Included studies were RCTs of psychological interventions that delivered treatment to parents of children and adolescents (under 19 years of age) with a chronic illness compared to active control, wait list control or treatment as usual. We excluded studies if the parent component was a coaching intervention, the aim of the intervention was health prevention/promotion, the comparator was a pharmacological treatment, the child/adolescent had an illness not listed above or the study included children with more than one type of chronic illness. Further to this, we excluded studies when the sample size of either comparator group was fewer than 10 at post-treatment. We included 35

  20. Psychological interventions for parents of children and adolescents with chronic illness

    Science.gov (United States)

    Eccleston, Christopher; Palermo, Tonya M; Fisher, Emma; Law, Emily

    2012-01-01

    Background Psychological therapies have been developed for parents of children and adolescents with a chronic illness. Such therapies include parent only or parent and child/adolescent, and are designed to treat parent behaviour, parent mental health, child behaviour/disability, child mental health, child symptoms and/or family functioning. No comprehensive, meta-analytic reviews have been published in this area. Objectives To evaluate the effectiveness of psychological therapies that include coping strategies for parents of children/adolescents with chronic illnesses (painful conditions, cancer, diabetes mellitus, asthma, traumatic brain injury, inflammatory bowel diseases, skin diseases or gynaecological disorders). The therapy will aim to improve parent behaviour, parent mental health, child behaviour/disability, child mental health, child symptoms and family functioning. Search methods We searched CENTRAL, MEDLINE, EMBASE and PsyclNFO for randomised controlled trials (RCTs) of psychological interventions that included parents of children and adolescents with a chronic illness. The initial search was from inception of these databases to June 2011 and we conducted a follow-up search from June 2011 to March 2012. We identified additional studies from the reference list of retrieved papers and from discussion with investigators. Selection criteria Included studies were RCTs of psychological interventions that delivered treatment to parents of children and adolescents (under 19 years of age) with a chronic illness compared to active control, wait list control or treatment as usual. We excluded studies if the parent component was a coaching intervention, the aim of the intervention was health prevention/promotion, the comparator was a pharmacological treatment, the child/adolescent had an illness not listed above or the study included children with more than one type of chronic illness. Further to this, we excluded studies when the sample size of either comparator

  1. [Coping with chronic illness and multiple medicines in older age: self-management support as an obligation in nursing].

    Science.gov (United States)

    Müller-Mundt, G; Schaeffer, D

    2011-02-01

    In later stages of chronic disease and especially in older age, chronically ill people are often dependent on multiple medicines. Coming to terms with complex medication regimes in everyday life is a challenging task. To provide the support actually needed, patient-centered interventions are essential, not only taking into account the patients' needs and preferences, but also promoting their ability to self manage their disease(s) and their medication regime. This paper outlines the results of a research project aimed at developing and evaluating an intervention to integrate self-management support into primary care, based on a qualitative exploration of the patients' and professionals' views. The findings stress that home care nurses should take an active part in self-management support but need to be prepared adequately. Therefore, a two-tier intervention was developed and evaluated in a prospective control study, consisting of a qualified training and guidelines for practice. The intervention serves to expand the nurses' professional competence to provide the needed individually tailored self-management support in home care.

  2. The Solace of an Uncertain Future: Acute Illness, the Self, and Self-Care.

    Science.gov (United States)

    Weingarten, Kaethe; Worthen, Miranda

    2018-03-01

    "Take care of yourself" may be one of the most ubiquitous phrases spoken to people who are ill or to their caretakers. Yet few people who offer it as a balm consider what the self experience is of the person to whom the injunction is offered. We unravel some of the paradoxes inherent in the phrase, illustrating complexities that arise in the context of a life-threatening diagnosis. To illustrate the relational nature of the self, we analyze a partial transcript of an interview conducted in 1988 with the authors-a family therapist mother who had recently undergone surgery for breast cancer and her then 9-year-old daughter. We also examine the role of time in the interview. We propose that unlike PTSD when the past invades the present, in life-threatening illness the future is foreclosed, leading to distortions in current perception and behavior. The second author presents a follow-up to the interview and relates it to her current experience as a mother with chronic health issues. We close with suggestions for clinicians. © 2018 Family Process Institute.

  3. Liaison psychiatry professionals' views of general hospital care for patients with mental illness: The care of patients with mental illness in the general hospital setting.

    Science.gov (United States)

    Noblett, J; Caffrey, A; Deb, T; Khan, A; Lagunes-Cordoba, E; Gale-Grant, O; Henderson, C

    2017-04-01

    Explore the experiences of liaison psychiatry professionals, to gain a greater understanding of the quality of care patients with mental illness receive in the general hospital setting; the factors that affect the quality of care; and their insights on interventions that could improve care. A survey questionnaire and qualitative in depth interviews were used to collect data. Data collection took place at the Royal College of Psychiatrists Faculty of Liaison Psychiatry Annual conference. Qualitative analysis was done using thematic analysis. Areas of concern in the quality of care of patients with co-morbid mental illness included 'diagnostic overshadowing', 'poor communication with patient', 'patient dignity not respected' and 'delay in investigation or treatment'. Eleven contributing factors were identified, the two most frequently mentioned were 'stigmatising attitudes of staff towards patients with co-morbid mental illness' and 'complex diagnosis'. The general overview of care was positive with areas for improvement highlighted. Interventions suggested included 'formal education' and 'changing the liaison psychiatry team'. The cases discussed highlighted several areas where the quality of care received by patients with co-morbid mental illness is lacking, the consequences of which could be contributing to physical health disparities. It was acknowledged that it is the dual responsibility of both the general hospital staff and liaison staff in improving care. Copyright © 2017 Elsevier Inc. All rights reserved.

  4. A Parent's Journey: Incorporating Principles of Palliative Care into Practice for Children with Chronic Neurologic Diseases.

    Science.gov (United States)

    Brown, Allyson; Clark, Jonna D

    2015-09-01

    Rather than in conflict or in competition with the curative model of care, pediatric palliative care is a complementary and transdisciplinary approach used to optimize medical care for children with complex medical conditions. It provides care to the whole child, including physical, mental, and spiritual dimensions, in addition to support for the family. Through the voice of a parent, the following case-based discussion demonstrates how the fundamentals of palliative care medicine, when instituted early in the course of disease, can assist parents and families with shared medical decision making, ultimately improving the quality of life for children with life-limiting illnesses. Pediatric neurologists, as subspecialists who provide medical care for children with chronic and complex conditions, should consider invoking the principles of palliative care early in the course of a disease process, either through applying general facets or, if available, through consultation with a specialty palliative care service. Copyright © 2015 Elsevier Inc. All rights reserved.

  5. An Interactive Mobile Phone-Website Platform to Facilitate Real-Time Management of Medication in Chronically ill Patients.

    Science.gov (United States)

    Anglada-Martínez, Helena; Martin-Conde, Maite; Rovira-Illamola, Marina; Sotoca-Momblona, Jose Miguel; Sequeira, Ethel; Aragunde, Valentin; Codina-Jané, Carles

    2017-08-01

    Poor adherence to medication is a prevalent issue that affects 50-60% of chronically ill patients. We present Medplan, a platform for patients/caregivers and healthcare professionals (HCPs) that aims to enhance adherence, increase patient medication knowledge, and facilitate communication between patients and HCPs. The Medplan platform was designed and developed by a multidisciplinary team composed of primary care and hospital physicians, pharmacists, patients, and developers. We questioned 62 patients in order to know their opinion about the different functions the app would incorporate and other possible features that should be taken into consideration. Medplan comprises a website for HCPs and an application (app) that is installed on the patient's phone. The app is available in Spanish, Catalan, and English. The patient's medication plan was introduced by the HCP and interfaced with the app. Each medicine is represented by an icon showing the indication of the treatment, the trade name, active ingredients, dose, and route of administration. Information about special requirements (e.g., need to take medication on an empty stomach), side effects, or lifestyle recommendations can also be provided. Additional functions include a medication reminder alarm system, by which patients can confirm whether or not they have taken the drug. Patients can self-track their adherence, and all data collected are sent automatically to the website for analysis by the HCP. Weekly motivation messages are sent to encourage adherence. A tool enabling interactive communication between patients and HCPs (primary care or hospital care) is also included. The app contains a feature enabling the HCP to verify the suitability of over-the-counter drugs. Medplan has the potential to significantly improve management of medication in chronically ill patients. A pilot study is being conducted to test whether Medplan is useful and effective.

  6. The articulation of neoliberalism: narratives of experience of chronic illness management in Bulgaria and the UK.

    Science.gov (United States)

    Vassilev, Ivaylo; Rogers, Anne; Todorova, Elka; Kennedy, Anne; Roukova, Poli

    2017-03-01

    The shift from social democratic to a neoliberal consensus in modern welfare capitalist states is characterised by an emphasis on individual responsibility, consumer choice, market rationality and growing social inequalities. There has been little exploration of how neoliberalism has shaped the environment within which chronic illness is experienced and managed. This article explores the different articulations of neoliberalism manifest in the arena of personal illness management in Bulgaria and the UK. People with type 2 diabetes discussed their experiences in terms of struggling with diet, diabetes as a personal failure, integrating illness management and valued activities, and the trustworthiness of the healthcare system. The UK narratives were framed within an individual responsibility discourse while in Bulgaria lack of resources dominated discussions, which were framed as structurally generated and unrelated to individual capabilities and choices. Respondents faced personal management challenges related to consumer and healthcare market failures in both countries. Differences in market regulation and emerging stakeholder and interest coalitions influenced users' expectations and their navigation and adaption to market failures in managing their everyday illnesses. The UK and Bulgarian articulations of neoliberalism can be described differently: the first as a logic of managed choice and the second as a logic of unmanaged consumerism. © 2016 Foundation for the Sociology of Health & Illness.

  7. Mind's response to the body's betrayal: Gestalt/Existential therapy for clients with chronic or life-threatening illnesses.

    Science.gov (United States)

    Imes, Suzanne A; Clance, Pauline Rose; Gailis, Andra T; Atkeson, Ellen

    2002-11-01

    In the literature on chronic or life-threatening illness, there is an overriding emphasis on clients' psychological coping styles and how they relate to psychological functioning. By contrast, in our approach, we look at the subjective mind/body experiences that clients have of their illness and how their lives are impacted by their illness. As psychotherapists, we address their existential distress, pain, body experience, thoughts, and feelings, as well as their efforts to cope or find meaning in their illness. We summarize Gestalt/Existential therapy for chronic illness, illustrate the approach with three case-vignettes, and stress the importance of attending to each client's unique responses to illness. Copyright 2002 Wiley Periodicals, Inc.

  8. Body image of children and adolescents with chronic illness: a meta-analytic comparison with healthy peers.

    Science.gov (United States)

    Pinquart, M

    2013-03-01

    This meta-analysis integrates results from 330 studies on differences between body image of children and adolescents with and without chronic physical illness. Young people with a chronic illness had a less positive body image than their healthy peers although the average size of differences was small (g=-.30 standard deviation units). A comparison of diseases showed that young people with obesity (g=-.79), cystic fibrosis (g=-.50), scoliosis (g=-.41), asthma (g=-.37), growth hormone deficits (g=-.35), spina bifida (g=-.23), cancer (g=-.20), and diabetes (g=-.17) evaluated their body less positively than their healthy peers. Furthermore, levels of body dissatisfaction varied by age at onset of the disease, method for assessing body image, ethnicity, year of publication, and comparison group. Recommendations are stated for reducing effects of chronic illness on the body image of people with chronic illness. Copyright © 2012 Elsevier Ltd. All rights reserved.

  9. Care giving of people with severe mental illness: an Indian experience.

    Science.gov (United States)

    Janardhana, Navaneetham; Raghunandan, Shravya; Naidu, Dodala Muniratnam; Saraswathi, L; Seshan, Valli

    2015-01-01

    Caring is a fundamental issue in the rehabilitation of a person with mental illness and more so for people with severe mental illness. The lack of adequate manpower resources in the country is adding and enlisting the responsibility of providing care on the families to provide physical, medical, social and psychological care for their severely unwell mentally ill people. To examine the load of caregiving with reference to the types of care during the symptomatic and remission phases of severe mental illness and the various ways in which caregivers adapt their lives to meet the needs of people with severe mental illness. The present research draws its data from the 200 families with mental illness in Andra Pradesh and Karnataka in India. The data presented in the study was collected from interviews using an interview schedule with open-ended questions. The study diffuses the notion of 'care' as 'physical', 'medical, 'psychological' and 'social' care. The present article focuses on the caregiving roles of the caregivers of people with schizophrenia, affective disorders and psychosis not otherwise specified (NOS) and found that the caregiving does not differ much between the different diagnosis, but caregiving roles changes from active involvement in physical and medical care to more of social and psychological care during the remission. The study records the incredulous gratitude of caregivers at being acknowledged for the work they do. In that regard, the study itself provides a boost to the morale of tired, unacknowledged caregivers.

  10. Determinants of levels and changes of physical functioning in chronically ill persons: results from the GLOBE Study

    OpenAIRE

    Mackenbach, J; Borsboom, G; Nusselder, W; Looman, C; Schrijvers, C

    2001-01-01

    STUDY OBJECTIVE—Declines in physical functioning are a common result of chronic illness, but relatively little is known about factors not directly related to severity of disease that influence the occurrence of disability among chronically ill persons. The aim of this study was to assess the effect of a large number of potential determinants (sociodemographic factors, health related behaviour, structural living conditions, and psychosocial factors).
DESIGN—Longitudinal study of levels and cha...

  11. From Controlling to Letting Go: What Are the Psychosocial Needs of Parents of Adolescents with a Chronic Illness?

    Science.gov (United States)

    Akre, Christina; Suris, Joan-Carles

    2014-01-01

    While one of the main objectives of adolescence is to achieve autonomy, for the specific population of adolescents with a chronic illness (CI), the struggle for autonomy is accentuated by the limits implied by their illness. However, little is known concerning the way their parents manage and cope with their children's autonomy acquisition.…

  12. Working as a doctor when chronically ill or disabled: comments made by doctors responding to UK surveys.

    Science.gov (United States)

    Smith, Fay; Goldacre, Michael J; Lambert, Trevor W

    2016-07-01

    To report a qualitative study of themes doctors raised spontaneously, in a large-scale prospective cohort study covering many aspects of their medical careers, when referring to their own chronic illness or disability. Questionnaire survey. UK. Questionnaires were sent one, five and 10 years after graduation to 44,539 doctors who qualified between 1993 and 2012 in the UK: 38,613 questionnaires were returned and 11,859 respondents provided comments made by doctors about their training or work. The comments of 123 doctors about their own chronic illness or disability. Main themes raised included poor support for doctors with chronic illness or disability, delays in and changes to careers (either planned ahead or imposed), the impact of pressure at work, difficulties returning to work after illness, limitations on career choices and inadequate careers advice for doctors with chronic illness or disabilities. More needs to be done to ensure that doctors with chronic illness or disability receive appropriate support. Occupational health guidance should be monitored closely, with more support for ill doctors including adjustments to the job, help if needed with morale and mental health, and advice on career options. Further studies should establish the prevalence of long-term health conditions among doctors.

  13. Illness perceptions and self-care behaviours in the first years of living with type 2 diabetes; does the presence of complications matter?

    Science.gov (United States)

    van Puffelen, Anne L; Heijmans, Monique J W M; Rijken, Mieke; Rutten, Guy E H M; Nijpels, Giel; Schellevis, François G

    2015-01-01

    To assess illness perceptions, self-care behaviours and their relationship in recently diagnosed type 2 diabetes mellitus (T2DM) patients with and without diabetes-related complications. Cross-sectional survey among 192 recently diagnosed T2DM patients of whom 23% reported the presence of diabetes-related complications. Illness perceptions and self-care were assessed by the Revised Illness Perception Questionnaire (IPQ-R) and the revised Summary of Diabetes Self-Care Activities (SDSCA) measure. Generally, participating patients perceived T2DM as a chronic, but relatively controllable condition with minor consequences. In the presence of complications, however, T2DM was perceived as more unpredictable with more (serious) consequences and less controllable by self-care or medical treatment. Furthermore, engagement in exercise and foot care was reported more often by patients with complications. Self-care was related to certain illness perception dimensions, and interactions between perceptions and complications were found. T2DM patients in the first years of their illness are often recommended to make lifestyle changes in the absence of noticeable diabetes-related symptoms or complaints. As many T2DM patients do not seem to perceive their condition to be serious and postpone lifestyle changes until diabetes-related complications appear, a major challenge for professionals is to convince asymptomatic patients of the importance of self-care.

  14. Intensive care diaries reduce new onset post traumatic stress disorder following critical illness

    DEFF Research Database (Denmark)

    Jones, Christina; Bäckman, Carl; Capuzzo, Maurizia

    2010-01-01

    Patients recovering from critical illness have been shown to be at risk of developing Post Traumatic Stress disorder (PTSD). This study was to evaluate whether a prospectively collected diary of a patient's intensive care unit (ICU) stay when used during convalescence following critical illness...

  15. Parents, Mental Illness, and the Primary Health Care of Infants and Young Children.

    Science.gov (United States)

    Fenichel, Emily, Ed.

    1993-01-01

    This bulletin issue contains five papers on the theme of adults with mental illness who are parents of very young children. "Parents, Mental Illness, and the Primary Health Care of Infants and Young Children" (John N. Constantino) offers the experience of a trainee in a combined residency in pediatrics and psychiatry, focusing on…

  16. How do macro-level contexts and policies affect the employment chances of chronically ill and disabled people? Part II: The impact of active and passive labor market policies.

    Science.gov (United States)

    Holland, Paula; Nylén, Lotta; Thielen, Karsten; van der Wel, Kjetil A; Chen, Wen-Hao; Barr, Ben; Burström, Bo; Diderichsen, Finn; Andersen, Per Kragh; Dahl, Espen; Uppal, Sharanjit; Clayton, Stephen; Whitehead, Margaret

    2011-01-01

    The authors investigate three hypotheses on the influence of labor market deregulation, decommodification, and investment in active labor market policies on the employment of chronically ill and disabled people. The study explores the interaction between employment, chronic illness, and educational level for men and women in Canada, Denmark, Norway, Sweden, and the United Kingdom, countries with advanced social welfare systems and universal health care but with varying types of active and passive labor market policies. People with chronic illness were found to fare better in employment terms in the Nordic countries than in Canada or the United Kingdom. Their employment chances also varied by educational level and country. The employment impact of having both chronic illness and low education was not just additive but synergistic. This amplification was strongest for British men and women, Norwegian men, and Danish women. Hypotheses on the disincentive effects of tighter employment regulation or more generous welfare benefits were not supported. The hypothesis that greater investments in active labor market policies may improve the employment of chronically ill people was partially supported. Attention must be paid to the differential impact of macro-level policies on the labor market participation of chronically ill and disabled people with low education, a group facing multiple barriers to gaining employment.

  17. Managing chronic conditions in a South African primary care context ...

    African Journals Online (AJOL)

    Managing chronic conditions in a South African primary care context: ... is an approach to motivating behaviour change in general health care settings. ... They had mixed experiences with skills for agenda setting and reducing resistance.

  18. Childhood abuse and neglect among women outpatients with chronic mental illness.

    Science.gov (United States)

    Muenzenmaier, K; Meyer, I; Struening, E; Ferber, J

    1993-07-01

    The purposes of the study were to determine the prevalence of childhood sexual abuse, physical abuse, and neglect among women outpatients with severe and persistent mental illness; to examine patterns of co-occurrence of the various types of abuse; and to explore the relationships between childhood abuse and adult psychiatric symptomatology. Childhood histories of abuse and data on clinical characteristics of 78 women enrolled in a New York State outpatient clinic were elicited in face-to-face interviews using a structured questionnaire. Sixty-five percent of the women reported histories of some type of abuse or neglect during childhood. Forty-five percent of the sample had been sexually abused, 51 percent had been physically abused, and 22 percent had experienced neglect. Seventy-four percent of the sexually abused women, 70 percent of the physically abused women, and 94 percent of the women who experienced neglect reported at least one additional form of abuse or neglect. Respondents who had been abused in childhood had higher levels of depressive and psychotic symptoms and higher rates of sexual victimization in adulthood than those who had not been abused. Women who experienced neglect as children had higher rates of homelessness in adulthood. Chronic mentally ill women seem to experience higher rates of abuse and more types of abuse than the general population. Clinicians should try to determine whether chronic mentally ill women have histories of abuse and to develop interventions to meet their special needs.

  19. Personal prayer in patients dealing with chronic illness: a review of the research literature.

    Science.gov (United States)

    Jors, Karin; Büssing, Arndt; Hvidt, Niels Christian; Baumann, Klaus

    2015-01-01

    Background. Prayer is commonly used among patients for health purposes. Therefore, this review focused on three main questions: (1) why do people turn to prayer in times of illness?, (2) what are the main topics of their prayers?, and (3) how do they pray? Method. We undertook a systematic review of the literature by searching the databases PubMed, Medline, and PsycINFO. The following inclusion criteria were used: (1) participants in the study were patients dealing with an illness, (2) the study examined the use of private rather than intercessory prayer, and (3) the content and purpose of prayer rather than its effects were investigated. Results. 16 articles were included in the final review. Participants suffered from a variety of chronic diseases, mostly cancer. Five main categories for the reasons and topics of prayer were found: (1) disease-centered prayer, (2) assurance-centered prayer, (3) God-centered prayer, (4) others-centered prayer, and (5) lamentations. Among these, disease-centered prayer was most common. Conclusions. Although most patients with chronic diseases do pray for relief from their physical and mental suffering, the intention of their prayers is not only for healing. Rather, prayer can be a resource that allows patients to positively transform the experience of their illness.

  20. Personal Prayer in Patients Dealing with Chronic Illness: A Review of the Research Literature

    Directory of Open Access Journals (Sweden)

    Karin Jors

    2015-01-01

    Full Text Available Background. Prayer is commonly used among patients for health purposes. Therefore, this review focused on three main questions: (1 why do people turn to prayer in times of illness?, (2 what are the main topics of their prayers?, and (3 how do they pray? Method. We undertook a systematic review of the literature by searching the databases PubMed, Medline, and PsycINFO. The following inclusion criteria were used: (1 participants in the study were patients dealing with an illness, (2 the study examined the use of private rather than intercessory prayer, and (3 the content and purpose of prayer rather than its effects were investigated. Results. 16 articles were included in the final review. Participants suffered from a variety of chronic diseases, mostly cancer. Five main categories for the reasons and topics of prayer were found: (1 disease-centered prayer, (2 assurance-centered prayer, (3 God-centered prayer, (4 others-centered prayer, and (5 lamentations. Among these, disease-centered prayer was most common. Conclusions. Although most patients with chronic diseases do pray for relief from their physical and mental suffering, the intention of their prayers is not only for healing. Rather, prayer can be a resource that allows patients to positively transform the experience of their illness.

  1. What is competent communication behaviour of patients in physician consultations? - Chronically-ill patients answer in focus groups.

    Science.gov (United States)

    Schmidt, Erika; Schöpf, Andrea C; Farin, Erik

    2017-09-01

    Many desirable outcomes depend on good patient-physician communication. Patient-based perspectives of what constitutes competent communication behavior with physicians are needed for patient-oriented health care. Therefore it was our main aim to identify competent patient communication skills from the patient's perspective. We also wanted to reveal any differences in opinion among various groups (chronic ischemic heart disease, chronic low back pain, breast cancer). This study examined nine guideline-supported focus groups in rehabilitation centers. The criterion for study inclusion was any one of the three diagnoses. Enrolled in the study were N = 49 patients (32 women) aged M = 60.1 (SD = 12.8). The interview recordings were transcribed and subjected to content analysis. We documented 396 commentaries in these interviews that were allocated to 82 different codes; these in turn resulted in the formation of 12 main topics. Examples are: posing questions, being an active and participatory patient, being aware of emotions and communicating them. This study represents stage two ('documentation of patient and clinician views') in the seven-stage model of communication research. Findings reveal that chronically-ill patients name behaviours that contribute to successful discussion with a physician. These enable us to develop communication trainings and design-measuring tools used for patient-based communication skills.

  2. Assessment of the worldwide burden of critical illness: the Intensive Care Over Nations (ICON) audit

    NARCIS (Netherlands)

    Vincent, J.L.; Marshall, J.C.; Namendys-Silva, S.A.; Francois, B.; Martin-Loeches, I.; Lipman, J.; Reinhart, K.; Antonelli, M.; Pickkers, P.; Njimi, H.; Jimenez, E.; Sakr, Y.; investigators, I.

    2014-01-01

    BACKGROUND: Global epidemiological data regarding outcomes for patients in intensive care units (ICUs) are scarce, but are important in understanding the worldwide burden of critical illness. We, therefore, did an international audit of ICU patients worldwide and assessed variations between

  3. Patterns of Illness and Care Before Deployment to the Persian Gulf War

    National Research Council Canada - National Science Library

    Miller, Richard

    2001-01-01

    ...) Comprehensive Clinical Evaluation Program (CCEP) upon returning from the Persian Gulf War have patterns of illness and medical care seeking during the year prior to deployment to the Persian Gulf that differ from those of comparison groups of Army...

  4. Patterns of Illness and Care Before Deployment to the Persian Gulf War

    National Research Council Canada - National Science Library

    Miller, Richard

    2002-01-01

    ...) Comprehensive Clinical Evaluation Program (CCEP) upon returning from the Persian Gulf War have patterns of illness and medical care seeking during the year prior to deployment to the Persian Gulf that differ from those of comparison groups of Army...

  5. Is frequent attendance of longer duration related to less transient episodes of care? A retrospective analysis of transient and chronic episodes of care

    NARCIS (Netherlands)

    Smits, F.T.; Brouwer, H.J.; Schene, A.H.; van Weert, H.C.; ter Riet, G.

    2016-01-01

    OBJECTIVES: Frequent attenders (FAs) suffer more and consult general practitioners (GPs) more often for chronic physical and psychiatric illnesses, social difficulties and distress than non-FAs. However, it is unclear to what extent FAs present transient episodes of care (TECs) compared with

  6. Economics of Palliative Care for Hospitalized Adults With Serious Illness: A Meta-analysis.

    Science.gov (United States)

    May, Peter; Normand, Charles; Cassel, J Brian; Del Fabbro, Egidio; Fine, Robert L; Menz, Reagan; Morrison, Corey A; Penrod, Joan D; Robinson, Chessie; Morrison, R Sean

    2018-06-01

    Economics of care for adults with serious illness is a policy priority worldwide. Palliative care may lower costs for hospitalized adults, but the evidence has important limitations. To estimate the association of palliative care consultation (PCC) with direct hospital costs for adults with serious illness. Systematic searches of the Embase, PsycINFO, CENTRAL, PubMed, CINAHL, and EconLit databases were performed for English-language journal articles using keywords in the domains of palliative care (eg, palliative, terminal) and economics (eg, cost, utilization), with limiters for hospital and consultation. For Embase, PsycINFO, and CENTRAL, we searched without a time limitation. For PubMed, CINAHL, and EconLit, we searched for articles published after August 1, 2013. Data analysis was performed from April 8, 2017, to September 16, 2017. Economic evaluations of interdisciplinary PCC for hospitalized adults with at least 1 of 7 illnesses (cancer; heart, liver, or kidney failure; chronic obstructive pulmonary disease; AIDS/HIV; or selected neurodegenerative conditions) in the hospital inpatient setting vs usual care only, controlling for a minimum list of confounders. Eight eligible studies were identified, all cohort studies, of which 6 provided sufficient information for inclusion. The study estimated the association of PCC within 3 days of admission with direct hospital costs for each sample and for subsamples defined by primary diagnoses and number of comorbidities at admission, controlling for confounding with an instrumental variable when available and otherwise propensity score weighting. Treatment effect estimates were pooled in the meta-analysis. Total direct hospital costs. This study included 6 samples with a total 133 118 patients (range, 1020-82 273), of whom 93.2% were discharged alive (range, 89.0%-98.4%), 40.8% had a primary diagnosis of cancer (range, 15.7%-100.0%), and 3.6% received a PCC (range, 2.2%-22.3%). Mean Elixhauser index scores ranged

  7. The family experience of care in chronic situation.

    Science.gov (United States)

    Bellato, Roseney; Araújo, Laura Filomena Santos de; Dolina, Janderléia Valéria; Musquim, Cleciene Dos Anjos; Corrêa, Geovana Hagata de Lima Souza Thaines

    2016-06-01

    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. Ensaio que tem por objetivo refletir sobre a experiência familiar de cuidado na situação crônica, ampliando a compreensão da família como cuidadora primária. Embasa-se em estudos de abordagem compreensiva realizados em três pesquisas matriciais que abordaram experiências familiares de cuidado. Tomamos três eixos para organizar nossas reflexões: a) conformação do cuidado familiar na situação crônica, destacando os múltiplos custos gerados à família, que podem exaurir seus potenciais de cuidado, instaurando ou ampliando sua vulnerabilidade se não for amparada por redes de apoio e sustentação; b) rearranjos familiares para o cuidado, dando visibilidade aos núcleos de cuidado compartilhados pelos diversos entes familiares, de modo dinâmico, plural e mut

  8. [Is vocational integration in the competitive labor market a realistic goal for the chronically mentally ill?].

    Science.gov (United States)

    Hoffmann, H

    1999-09-01

    A wide range of sheltered jobs has been created in the second or special labour market with the aim of enabling the chronically mentally ill to participate in working life. However, having a job in the special labour market often precludes the chance of obtain-ing employment in the competitive labour market. To date, vocational integration programs enable only a small number of persons with psychiatric disabilities to attain reintegration into competitive employment. The predictors of successful vocational integration are subsequently discussed. A substantial increase in both sheltered and competitive jobs on the common labour market could be achieved for mentally ill and disabled people by adapting the "supported employment" model, as widely practised in the USA, to European labour market standards and appropriately funding its implementation. The utilisation of this model could serve to reduce the necessity of further expansion in the special labour market.

  9. A conceptual model of independence and dependence for adults with chronic physical illness and disability.

    Science.gov (United States)

    Gignac, M A; Cott, C

    1998-09-01

    This paper presents a conceptual model of physical independence and dependence as it relates to adult onset, chronic physical illness and disability. Physical independence and dependence are presented as two separate, continuous, and multiply determined constructs, and illustrations are provided of situations where people can be independent, dependent, not independent, or experience imposed dependence. The paper also discusses potential determinants of physical independence and dependence, including different domains of disability, the role of subjective perceptions, demographics, the physical and social/political environments, personal resources, attitudes and coping resources, illness and efficacy appraisals, and the nature of the assistive relationship. The paper extends work on physical independence and dependence by synthesizing the findings from previous studies and incorporating the findings from other relevant areas of research into the area. It also expands on the concepts of physical independence and dependence, as well as their determinants, and relates independence and dependence to other outcomes of interest such as service delivery.

  10. Health Care Utilization and Costs Associated with Pediatric Chronic Pain.

    Science.gov (United States)

    Tumin, Dmitry; Drees, David; Miller, Rebecca; Wrona, Sharon; Hayes, Don; Tobias, Joseph D; Bhalla, Tarun

    2018-03-30

    The population prevalence of pediatric chronic pain is not well characterized, in part due to lack of nationally representative data. Previous research suggests that pediatric chronic pain prolongs inpatient stay and increases costs, but the population-level association between pediatric chronic pain and health care utilization is unclear. We use the 2016 National Survey of Children's Health to describe the prevalence of pediatric chronic pain, and compare health care utilization among children ages 0-17 years according to the presence of chronic pain. Using a sample of 43,712 children, we estimate the population prevalence of chronic pain to be 6%. On multivariable analysis, chronic pain was not associated with increased odds of primary care or mental health care use, but was associated with greater odds of using other specialty care (OR=2.01, 95% CI: 1.62, 2.47; pcomplementary and alternative medicine (OR=2.32, 95% CI: 1.79, 3.03; pchronic pain were more likely to use specialty care but not mental health care. The higher likelihood of emergency care use in this group raises the question of whether better management of pediatric chronic pain could reduce emergency department use. Copyright © 2018. Published by Elsevier Inc.

  11. Si dios quiere: Hispanic families' experiences of caring for a seriously mentally ill family member.

    Science.gov (United States)

    Guarnaccia, P J; Parra, P; Deschamps, A; Milstein, G; Argiles, N

    1992-06-01

    Among Hispanics, the family is viewed as the primary care giver for seriously mentally ill family members. This paper reports on a study of minority families' conceptions of serious mental illness, of their interaction with mental health resources, and on the burdens experienced by families in caring for a seriously mentally ill family member. The focus of this paper is on Hispanic families in New Jersey, with some comparative data from other ethnic group families. Families' conceptions of serious mental illness are explored and analyzed to demonstrate the importance of concepts of nervios and fallo mental in shaping families' responses to their ill family member. Social support systems for families are also explored with particular attention to the role of religious institutions and religious healing as a major source of solace.

  12. Rehabilitation of mental illness and chronic pain: The impact on sick leave and health

    OpenAIRE

    Hägglund, Pathric; Johansson, Per-Olov; Laun, Lisa

    2015-01-01

    This paper exploits a government initiative to analyze the effect of cognitive behavioral therapy (CBT) for individuals with mild or moderate mental illness and multidisciplinary treatment (MDT) for individuals with pain in back and shoulders. We employ a propensity score matching approach to study the effects on sick leave, health care consumption and drug prescriptions. We find that CBT improved health and prevented sick leave for individuals who were not on sick leave when treatment was in...

  13. Accounting for vulnerability to illness and social disadvantage in pandemic critical care triage.

    Science.gov (United States)

    Kaposy, Chris

    2010-01-01

    In a pandemic situation, resources in intensive care units may be stretched to the breaking point, and critical care triage may become necessary. In such a situation, I argue that a patient's combined vulnerability to illness and social disadvantage should be a justification for giving that patient some priority for critical care. In this article I present an example of a critical care triage protocol that recognizes the moral relevance of vulnerability to illness and social disadvantage, from the Canadian province of Newfoundland and Labrador.

  14. The functions of hospital-based home care for people with severe mental illness in Taiwan.

    Science.gov (United States)

    Huang, Xuan-Yi; Lin, Mei-Jue; Yang, Tuz-Ching; Hsu, Yuan-Shan

    2010-02-01

    The purposes of this study were to understand the functions of hospital-based home care for people with severe mental illness in Taiwan, and the factors that affect functions of professionals who provide hospital-based home care. Hospital-based home care is a service which provides those people with serious mental illnesses who are in crisis and who are candidates for admission to hospital. Home care has been shown to have several advantages over inpatient treatment. However, there is a lack of knowledge about the functions of hospital-based home care for people with severe mental illness in Taiwan. This qualitative study was based on the grounded theory method of Strauss and Corbin. The study was conducted in six different hospital areas in central Taiwan in 2007-2008. Data were collected using semi-structured face-to-face interviews. Constant comparative analysis continued during the open, axial and selective coding processes until data saturation occurred. Participants were selected by theoretical sampling. When theoretical saturation was achieved, 21 clients with mental illness, 19 carers and 25 professionals were interviewed. Several functions were found when these professionals provided hospital-based home care services for people with severe mental illness in Taiwan, including stabilising the clients illness, supplying emergency care services, improving life-coping abilities, employment and welfare assistance, emotional support for both clients and carers, assistance with future and long-term arrangements and assistance with communication between carers and clients. Hospital-based home care provides several important services for helping clients and their families to live in the community. The recommendations based on the findings of this study can be used as a guide to improve the delivery of hospital-based home care services to community-dwelling clients with severe mental illness and their carers.

  15. Life memories and the ability to act: the meaning of autonomy and participation for older people when living with chronic illness.

    Science.gov (United States)

    Hedman, Maria; Pöder, Ulrika; Mamhidir, Anna-Greta; Nilsson, Annika; Kristofferzon, Marja-Leena; Häggström, Elisabeth

    2015-12-01

    There is a lack of knowledge about how older people living with chronic illness describe the meaning of autonomy and participation, indicating a risk for reduced autonomy and participation in their everyday life. The purpose of this study was to describe the meaning of autonomy and participation among older people living with chronic illness in accordance with their lived experience. The design was descriptive with a phenomenological approach guided by Giorgi's descriptive phenomenological psychological method. Purposive sampling was used, and 16 older people living with chronic illness who lived in an ordinary home participated in individual interviews. The findings showed that the meaning of autonomy and participation among the older people emerged when it was challenged and evoked emotional considerations of the lived experience of having a chronic illness. It involved living a life apart, yet still being someone who is able, trustworthy and given responsibility--still being seen and acknowledged. The meaning of autonomy and participation was derived through life memories and used by the older people in everyday life for adjustment or adaption to the present life and the future. Our conclusion is that autonomy and participation were considered in relation to older people's life memories in the past, in their present situation and also their future wishes. Ability or disability is of less importance than the meaning of everyday life among older people. We suggest using fewer labels for limitations in everyday life when caring for older people and more use of the phrase 'ability to act' in different ways, based on older people's descriptions of the meaning of autonomy and participation. © 2015 Nordic College of Caring Science.

  16. Exertional heat illness: emerging concepts and advances in prehospital care.

    Science.gov (United States)

    Pryor, Riana R; Roth, Ronald N; Suyama, Joe; Hostler, David

    2015-06-01

    Exertional heat illness is a classification of disease with clinical presentations that are not always diagnosed easily. Exertional heat stroke is a significant cause of death in competitive sports, and the increasing popularity of marathons races and ultra-endurance competitions will make treating many heat illnesses more common for Emergency Medical Services (EMS) providers. Although evidence is available primarily from case series and healthy volunteer studies, the consensus for treating exertional heat illness, coupled with altered mental status, is whole body rapid cooling. Cold or ice water immersion remains the most effective treatment to achieve this goal. External thermometry is unreliable in the context of heat stress and direct internal temperature measurement by rectal or esophageal probes must be used when diagnosing heat illness and during cooling. With rapid recognition and implementation of effective cooling, most patients suffering from exertional heat stroke will recover quickly and can be discharged home with instructions to rest and to avoid heat stress and exercise for a minimum of 48 hours; although, further research pertaining to return to activity is warranted.

  17. Hope and fatigue in chronic illness: The role of perceived stress.

    Science.gov (United States)

    Hirsch, Jameson K; Sirois, Fuschia M

    2016-04-01

    Fatigue is a debilitating symptom of chronic illness that is deleteriously affected by perceived stress, a process particularly relevant to inflammatory disease. Hopefulness, a goal-based motivational construct, may beneficially influence stress and fatigue, yet little research has examined these associations. We assessed the relation between hope and fatigue, and the mediating effect of stress, in individuals with fibromyalgia, arthritis, and inflammatory bowel disease. Covarying age, sex, and pain, stress partially mediated the association between hope and fatigue; those with greater hope reported less stress and consequent fatigue. Therapeutically, bolstering hope may allow proactive management of stressors, resulting in less fatigue. © The Author(s) 2014.

  18. Peer victimization and subjective health among students reporting disability or chronic illness in 11 Western countries

    DEFF Research Database (Denmark)

    Sentenac, Mariane; Gavin, Aoife; Nic Gabhainn, Saoirse

    2013-01-01

    BACKGROUND: To compare the strength of the association between peer victimization at school and subjective health according to the disability or chronic illness (D/CI) status of students across countries. METHODS: This study used data from 55 030 students aged 11, 13 and 15 years from 11 countries...... reporting D/CI were more likely to report being victims of bullying. Victims of bullying reported more negative subjective health outcomes regardless of their D/CI status. Although inclusive education is currently a major topic of educational policies in most countries, additional efforts should be made...

  19. Investigating the relationships between chronic ill health and educational outcomes in children

    Directory of Open Access Journals (Sweden)

    Michael Fleming

    2017-04-01

    Compared to peers, children who had ADHD or depression were most adversely affected experiencing poorer educational outcomes in all five of the educational domains investigated. Children with epilepsy experienced poorer outcomes across four domains. Children with diabetes and asthma experienced more absence and increased SEN and asthmatic children experienced poorer attainment. Children who have these chronic illnesses at school appear to be at an educational disadvantage therefore further understanding of the intricate relationships between health and education is an on-going important area of public health.

  20. Applying a coping with stress questionnaire for cancer patients to patients with non-cancer chronic illnesses.

    Science.gov (United States)

    Orive, Miren; Quintana, Jose M; Vrotsou, Kalliopi; Las Hayas, Carlota; Bilbao, Amaia; Barrio, Irantzu; Matellanes, Begoña; Padierna, Jesús A

    2013-06-01

    One of the few instruments to evaluate coping skills among patients with chronic illnesses is the Cuestionario de Afrontamiento al Estrés para Pacientes Oncológicos (CAEPO), created initially for cancer patients. We evaluate how well CAEPO applies to patients with non-cancer chronic illnesses. A total of 344 patients (115 with chronic hepatitis C, 120 with inflammatory bowel disease and 109 with recurrent vertigo) completed the CAEPO. Exploratory factor analysis and Cronbach's alpha provide only partial support for the seven factors suggested by the original CAEPO. A streamlined version with fewer dimensions and items may be a better solution for identifying coping strategies among these patients.

  1. Home Care Services

    Science.gov (United States)

    Home care is care that allows a person with special needs stay in their home. It might be for people who are getting ... are chronically ill, recovering from surgery, or disabled. Home care services include Personal care, such as help ...

  2. Treating HIV and African ethnicity : towards chronic care

    NARCIS (Netherlands)

    Schoffelen, A.F.

    2015-01-01

    Since the introduction of antiretroviral therapy (ART) almost two decades ago, the course of an HIV infection has shifted from acute illness with high mortality towards a chronic disease with good life expectancy. Alongside the improved survival, new comorbidities have emerged as well amongst the

  3. Accountability for the Quality of Care Provided to People with Serious Illness

    Science.gov (United States)

    Hudson Scholle, Sarah; Briefer French, Jessica

    2018-01-01

    Abstract Background: Care for patients with serious illness is an emerging practice area that has gained attention as value-based purchasing has increased. While the number of programs is growing, their impact on care quality and outcomes is unknown. Objective: With support from the Gordon and Betty Moore Foundation, the National Committee for Quality Assurance (NCQA) is assessing the feasibility of creating an accountability program focused on serious illness care. Methods: This article describes the process of developing an accountability program, findings from our initial work, and our plans to develop measures for a serious illness care accountability program. We focused on three questions: 1. What patient populations should be targeted for measurement?2. What entities have accountability for ensuring high-quality care for serious illness?3. What structures, processes, and outcomes should be evaluated in an accountability program for serious illness care? Results: Our environmental scan showed that the evidence base for specific patient populations or care models is not sufficiently mature to justify traditional structure and process measures. In visits to serious illness care programs, we observed different staffing models, care models, care settings, and payment structures. We found a gap between recommended inclusion criteria and services when compared to inclusion criteria and services offered by existing programs. Conclusions: To address the challenges, NCQA intends to develop outcome measures driven by patient and family priorities. Structure and process measures will focus on building organizations' capacity to measure outcomes, including patient engagement and outcomes, linked to patient goals. PMID:29313755

  4. The conceptualization of family care during critical illness in ...

    African Journals Online (AJOL)

    J. de Beer

    the objective of this study was to explore the meaning of family care within a South African context. Methodology: This .... Additionally, the diverse societal contexts within which family care is ..... of palliative and end of life care in hospitals, hospices or homes (Abiven .... representations of community and their implications for.

  5. Using Freire's Participatory Educational Method to Understand the Experience of Living With Chronic Illness in the Current Age of Globalization.

    Science.gov (United States)

    Camargo Plazas, Maria del Pilar; Cameron, Brenda L

    2015-06-01

    Many approaches and efforts have been used to better understand chronic diseases worldwide. Yet, little is known about the meaning of living with chronic illness under the pressures of globalization and neoliberal ideologies. Through Freire's participatory educational method, this article presents an innovative approach to understanding the multiple dimensions of living with chronic illness. In this way, we hope to use an innovative approach to address the impact of globalization on the daily life of chronically ill people and thus expand to the body of knowledge on nursing. This article uses Freire's participatory educational method to understand the multiple dimensions of living with chronic illness. This qualitative study follows an interpretive inquiry approach and uses a critical hermeneutic phenomenological method and critical research methodologies. Five participants were recruited for this participatory educational activity. Data collection methods included digitally recorded semistructured individual interviews and a Freire's participatory educational method session. Data analysis included a thematic analysis. Participants reported lacking adequate access to healthcare services because of insurance policies; a general perception that they were an unwanted burden on the healthcare system; and a general lack of government support, advocacy, and political interest. This research activity assisted participants to gain a new critical perspective about the condition of others with chronic diseases and thus provided an enlightening opportunity to learn about the illnesses and experiences of others and to realize that others experienced the same oppression from the healthcare system. Participants became agents of change within their own families and communities. Chronic diseases cause many economic and social consequences in their victims. These findings urge us to move from merely acknowledging the difficulties of people who live with chronic illness in an age of

  6. Aromatherapy hand massage for older adults with chronic pain living in long-term care.

    Science.gov (United States)

    Cino, Kathleen

    2014-12-01

    Older adults living in long-term care experience high rates of chronic pain. Concerns with pharmacologic management have spurred alternative approaches. The purpose of this study was to examine a nursing intervention for older adults with chronic pain. This prospective, randomized control trial compared the effect of aromatherapy M technique hand massage, M technique without aromatherapy, and nurse presence on chronic pain. Chronic pain was measured with the Geriatric Multidimensional Pain and Illness Inventory factors, pain and suffering, life interference, and emotional distress and the Iowa Pain Thermometer, a pain intensity scale. Three groups of 39 to 40 participants recruited from seven long-term care facilities participated twice weekly for 4 weeks. Analysis included multivariate analysis of variance and analysis of variance. Participants experienced decreased levels of chronic pain intensity. Group membership had a significant effect on the Geriatric Multidimensional Pain Inventory Pain and Suffering scores; Iowa Pain Thermometer scores differed significantly within groups. M technique hand massage with or without aromatherapy significantly decreased chronic pain intensity compared to nurse presence visits. M technique hand massage is a safe, simple, but effective intervention. Caregivers using it could improve chronic pain management in this population. © The Author(s) 2014.

  7. Care provision to prevent chronic disease by community mental health clinicians.

    Science.gov (United States)

    Bartlem, Kate M; Bowman, Jennifer A; Freund, Megan; Wye, Paula M; McElwaine, Kathleen M; Wolfenden, Luke; Campbell, Elizabeth M; Gillham, Karen E; Wiggers, John H

    2014-12-01

    People with a mental illness have higher prevalence of behavioral risks for chronic disease than the general population. Despite recommendations regarding the provision of preventive care by mental health services, limited research has examined the extent to which such care is provided. To examine mental health clinician provision of care for preventable chronic disease risks, and whether such care was associated with the availability of practice support strategies. A cross-sectional survey was undertaken of 151 community mental health clinicians in New South Wales, Australia regarding the provision of three elements of preventive care (i.e., assessment, brief advice, and referral/follow-up) for four health risk behaviors (i.e., tobacco smoking, inadequate fruit and vegetable consumption, harmful alcohol consumption, and inadequate physical activity). Clinicians reported the availability of 16 strategies to support such care delivery. Data were collected in 2010 and analyzed in 2012-2013. Preventive care provision varied by both care element and risk behavior. Optimal care (each care element provided to at least 80% of clients for all health behaviors) was provided by few clinicians: assessment (8.6%), brief advice (24.5%), and referral/follow-up (9.9%). Less than half of clinicians reported more than four support strategies were available (44.4%). The availability of five or more strategies was associated with increased optimal preventive care. The provision of preventive care focused on chronic disease prevention in community mental health services is suboptimal. Interventions to increase the routine provision of such care should involve increasing the availability of evidence-based strategies to support care provision. Copyright © 2014 American Journal of Preventive Medicine. Published by Elsevier Inc. All rights reserved.

  8. Mental Health Service Use for Patients with Co-occurring Mental and Physical Chronic Health Care Needs in Primary Care Settings

    Science.gov (United States)

    Haynes-Maslow, Lindsey; Roberts, Megan C.; Dusetzina, Stacie B.

    2016-01-01

    Background Individuals with mental illness experience poor health and may die prematurely from chronic illness. Understanding whether the presence of co-occurring chronic physical health conditions complicates mental health treatment is important, particularly among patients seeking treatment in primary care settings. Objectives Examine (1) whether the presence of chronic physical conditions is associated with mental health service use for individuals with depression who visit a primary care physician, and (2) whether race modifies this relationship. Research Design Secondary analysis of the National Ambulatory Medical Care Survey, a survey of patient-visits collected annually from a random sample of 3,000 physicians in office-based settings. Subjects Office visits from 2007–2010 were pooled for adults ages 35–85 with a depression diagnosis at the time of visit (N=3,659 visits). Measures Mental health services were measured using a dichotomous variable indicating whether mental health services were provided during the office visit or a referral made for: (1) counseling, including psychotherapy and other mental health counseling and/or (2) prescribing of psychotropic medications. Results Most patient office visits (70%) where a depression diagnosis was recorded also had co-occurring chronic physical conditions recorded. The presence of at least one physical chronic condition was associated with a 6% decrease in the probability of receiving any mental health services (pneeded on medical care delivery among patients with co-occurring health conditions, particularly as the health care system moves towards an integrated care model. PMID:26147863

  9. Development of a measure of the impact of chronic parental illness on adolescent and adult children. The parental illness impact scale (Parkinson's disease).

    Science.gov (United States)

    Schrag, Anette; Morley, David; Quinn, Niall; Jahanshahi, Marjan

    2004-10-01

    Although chronic illness is likely to affect the well-being of patients' children, no assessment tools are currently available to measure this impact of parental illness. We therefore developed such an instrument based on interviews with children of patients with Parkinson's disease (PD). This questionnaire and other measures of psychological well-being were completed by 89 children, aged 12-48, years of patients with PD. Factor analysis revealed six domains with 38 questions. These six domains of the 'Parental Illness Impact Scale (Parkinson's disease)' or PIIS (PD) had satisfactory internal consistency and validity. Its six sub-scales correlated significantly and differentially with corresponding measures, including the Quality of Life in Epilepsy Inventory for Adolescents (QOLIE-AD-48; r = -0.2 to 0.85), the Beck Depression Inventory (r = -0.07 to -0.40) or Birleson Depression Self-Rating Scale (r = 0.04 to -0.62), and the Rosenberg Self-Esteem Scale (r = -0.01 to 0.33) as well as age (r = -0.37 to 0.28) and parent's disease duration (r = -0.31 to 0.34). The PIIS is the first instrument to assess the impact of parental illness on children. Its psychometric properties should be tested further in larger samples, including children of patients with other chronic disorders such as multiple sclerosis or chronic heart disease.

  10. Activating chronic kidney disease patients and family members through the Internet to promote integration of care

    Directory of Open Access Journals (Sweden)

    Michael Trisolini

    2004-10-01

    Full Text Available Purpose: To describe the potential role of the Internet as a vehicle for improving integration of care through activating chronic kidney disease patients and their family members. Also, to describe how that potential is being developed through a website sponsored by the Medicare program in the United States. Background: The Internet is expanding at a rapid rate, and health-related websites are one of its most popular features. Efforts to promote integration of care have focused mainly on providers up to now, and more emphasis is needed on the potential roles of patients. Chronically ill patients have particular needs for improved education about their conditions and enhanced involvement in care planning and treatment decisions. Medicare developed the Dialysis Facility Compare website to serve those goals for people with chronic kidney disease. Methods: We conducted qualitative research with 140 chronic kidney disease patients and family members, and 130 renal care professionals to evaluate and improve the Dialysis Facility Compare website. A series of 19 focus groups, 13 triads (small focus groups, and 56 individual interviews were conducted in four regions of the United States and by telephone. Results: We found that the Dialysis Facility Compare website has the potential to improve integration of care for people with chronic kidney disease in at least three ways. First: by expanding the roles of patients as members of the multi-disciplinary team of caregivers treating their disease. Second: through better integration of the informal care provided in the home and community with the formal care provided by health professionals. Third: by improving coordination of between care provided in the pre-dialysis and dialysis phases of the disease. Discussion: We developed recommendations for revising and enhancing the Dialysis Facility Compare website in a number of ways to better promote patient activation and integration of care. The unique features

  11. The relation of illness perceptions to stress, depression, and fatigue in patients with chronic lymphocytic leukaemia.

    Science.gov (United States)

    Westbrook, Travis D; Maddocks, Kami; Andersen, Barbara L

    2016-07-01

    Chronic lymphocytic leukaemia (CLL) is the most prevalent adult leukaemia and is incurable. The course and treatment of CLL is unique and characterised by repeated cycles of treatment, stable disease and relapse. Utilising a Self-Regulatory Model framework, we examined the relationship between patients' illness perceptions and cancer-specific stress, depressive symptoms and fatigue. Our aim was to test illness perceptions as predictors of these outcomes when variance due to disease and treatment variables was controlled. Data were collected on 147 patients with relapsed/refractory CLL as they entered a phase II clinical trial of an investigational medication at a university affiliated, National Cancer Institute designated comprehensive cancer center. Cancer-specific stress, depressive symptoms and fatigue interference. . Hierarchical multiple regression was used. Consequences and emotional representation were related to all outcomes (ps stress (p fatigue interference (p stress, depressive symptoms and fatigue interference in relapsed/refractory CLL. Interventions targeted at restructuring maladaptive illness perceptions may have clinical benefit in this population.

  12. LIFE QUALITY IN CASES WITH CHRONICAL DEGENERATIVE ILLNESS OF LOCOMOTIVE SYSTEM REGARDING SEX, AGE AND OVERWEIGHT

    Directory of Open Access Journals (Sweden)

    Munevera Bećarević

    2012-09-01

    Full Text Available Disturbances of muscle and skeleton system are related to pain, functional damages and inability to work. Measure of life quality offers a sequence of data on illness influence on everyday functioning. The aim of this paper is evaluation of life quality in cases with degenerative illnesses of locomotive system and influence of sex, age, weist and BMI on life quality. Epidemiologic research was conducted on 71 tested subjects with diagnosis of chronical degenerative reumatical illness. Tested subject were measured weist values, BMI was determined and all of them fulfilled EQ5D questionnaire for life quality assessment. According to VAS scale their health condition was evaluated. Life quality of tested subjects was decreased especially in department of depression and increased concern (2.30 – 2.57 as well as pain and discomfort (2.11 – 2.31. We didn't determine statistically significant sex influence (p> 0,05, age, (p> 0,05 weist values (p> 0,05 or BMI (p> 0,05 our tested subjects life quality. According to VAS scale health condition of tested subjects is low (6, 76 ± 1,04.

  13. [Prevention and management of refeeding syndrome in patients with chronic critical illness].

    Science.gov (United States)

    Chen, Jun; Fan, Chaogang

    2016-07-01

    Nutritional support is an important means to treat the patients with chronic critical illness for commonly associated malnutrition. Refeeding syndrome is a serious complication during the process, mainly manifested as severe electrolyte with hypophosphataemia being the most common. Refeeding syndrome is not uncommon but it is often ignored. In our future clinical work, we need to recognize this chinical situation and use preventative and treatment measures. According to NICE clinical nutrition guideline, we discussed the risk factors, treatment methods and preventive measures of refeeding syndrome in patients with chronic critical illness. We argued that for patients with high risk refeeding syndrome, nutritional support treatment should be initially low calorie and slowly increased to complete requirement. Circulation capacity should be recovered, fluid balance must be closely monitored and supplement of vitamins, microelement, electrolytes should be noted. After the emergence of refeeding syndrome, we should reduce or even stop the calorie intake, give an active treatment for electrolyte disorder, provide vitamin B, and maintain the functions of multiple organs.

  14. Chronic Neurodegenerative Illnesses and Epilepsy in Danish Adventists and Baptists: A Nationwide Cohort Study.

    Science.gov (United States)

    Thygesen, Lau Caspar; Gimsing, Louise NØrreslet; Bautz, Andrea; Hvidt, Niels Christian; Johansen, Christoffer

    2017-01-01

    Limited knowledge of the influence of lifestyle risk factors and religious living on chronic neurological diseases exists. Seventh-day Adventists (SDA) do not consume tobacco, alcohol, or pork, and many adhere to lacto-ovo-vegetarian diet, and Baptists discourage excessive use of alcohol and tobacco. We investigated whether the incidence of four common chronic neurological illnesses: dementia, Alzheimer's disease, Parkinson's disease, and epilepsy in a large cohort of Danish Adventists and Baptists was different compared to the general Danish population. Three of the illnesses are neurodegenerative, whereas epilepsy can occur at any age. We compared hospital admission rates for some major neurological diseases among members of the Danish Religious Societies Health Study comprising 6,532 SDA and 3,720 Baptists with the general Danish population. Standardized incidence ratios (SIR) stratified by sex, age, and calendar time were calculated. SIR of dementia or Alzheimer's disease was significantly decreased for members of both communities (SDA, 0.78; 95% CI, 0.67-#x2013;0.90 and Baptists, 0.59; 0.47-#x2013;0.73). The SIRs of Parkinson's disease and epilepsy were not significantly different compared to the general population. We observe reduced incidence for dementia or Alzheimer's disease in a large cohort of members of two religious communities characterized by lifestyle recommendations. More studies are needed to disentangle the interaction between such lifestyle and other components of the religious belief system.

  15. Managing childhood chronic illness: parent perspectives and implications for parent-provider relationships.

    Science.gov (United States)

    Kratz, Lyn; Uding, Nancy; Trahms, Cristine M; Villareale, Nanci; Kieckhefer, Gail M

    2009-12-01

    When children have special health care needs, parents assume the roles of care coordinator, medical expert, and systems advocate as well as their typical parenting roles. They face many challenges in managing their child's chronic condition in the context of everyday life. Health care providers are uniquely positioned to assist parents in meeting those challenges and to promote parent competency and confidence in their child's care. The data for this analysis were collected during classes for parents of children with chronic conditions who took part in a randomized controlled study of a curriculum's effectiveness. During facilitated discussions, parents discussed challenges they faced and generated strategies they found helpful. Qualitative data analysis revealed dominant themes across subject areas. Challenges included social isolation, strained relationships and ongoing frustrations with health care and educational systems. Helpful strategies focused on being prepared, connecting with peers, becoming an advocate, developing partnerships and caring for one's self. Implications for health care providers include: understanding common challenges parents face; promoting parent-to-parent connections; and building partnerships with parents and their children with special needs.

  16. Awareness and Use of California's Paid Family Leave Insurance Among Parents of Chronically Ill Children

    Science.gov (United States)

    Schuster, Mark A.; Chung, Paul J.; Elliott, Marc N.; Garfield, Craig F.; Vestal, Katherine D.; Klein, David J.

    2016-01-01

    Context In 2004, California's Paid Family Leave Insurance Program (PFLI) became the first state program to provide paid leave to care for an ill family member. Objective To assess awareness and use of the program by employed parents of children with special health care needs, a population likely to need leave. Design, Setting, and Participants Telephone interviews with successive cohorts of employed parents before (November 21, 2003-January 31, 2004; n=754) and after (November 18, 2005-January 31, 2006; n=766) PFLI began, randomly sampled from 2 children's hospitals, one in California (with PFLI) and the other in Illinois (without PFLI). Response rates were 82% before and 81% after (California), and 80% before and 74% after (Illinois). Main Outcome Measures Taking leave, length of leave, unmet need for leave, and awareness and use of PFLI. Results Similar percentages of parents at the California site reported taking at least 1 day of leave to care for their ill child before (295 [81%]) and after (327 [79%]) PFLI, taking at least 4 weeks before (64 [21%]) and after (74 [19%]) PFLI, and at least once in the past year not missing work despite believing their child's illness necessitated it before (152 [41%]) and after (156 [41%]) PFLI. Relative to Illinois, parents at the California site reported no change from before to after PFLI in taking at least 1 day of leave (difference of differences, −3%; 95% confidence interval [CI], −13% to 7%); taking at least 4 weeks of leave (1%; 95% CI, −9% to 10%); or not missing work, despite believing their child's illness necessitated it (−1%; 95% CI, −13% to 10%). Only 77 parents (18%) had heard of PFLI approximately 18 months after the program began, and only 20 (5%) had used it. Even among parents without other access to paid leave, awareness and use of PFLI were minimal. Conclusions Parents of children with special health care needs receiving care at a California hospital were generally unaware of PFLI and rarely used

  17. Awareness and use of California's Paid Family Leave Insurance among parents of chronically ill children.

    Science.gov (United States)

    Schuster, Mark A; Chung, Paul J; Elliott, Marc N; Garfield, Craig F; Vestal, Katherine D; Klein, David J

    2008-09-03

    In 2004, California's Paid Family Leave Insurance Program (PFLI) became the first state program to provide paid leave to care for an ill family member. To assess awareness and use of the program by employed parents of children with special health care needs, a population likely to need leave. Telephone interviews with successive cohorts of employed parents before (November 21, 2003-January 31, 2004; n = 754) and after (November 18, 2005-January 31, 2006; n = 766) PFLI began, randomly sampled from 2 children's hospitals, one in California (with PFLI) and the other in Illinois (without PFLI). Response rates were 82% before and 81% after (California), and 80% before and 74% after (Illinois). Taking leave, length of leave, unmet need for leave, and awareness and use of PFLI. Similar percentages of parents at the California site reported taking at least 1 day of leave to care for their ill child before (295 [81%]) and after (327 [79%]) PFLI, taking at least 4 weeks before (64 [21%]) and after (74 [19%]) PFLI, and at least once in the past year not missing work despite believing their child's illness necessitated it before (152 [41%]) and after (156 [41%]) PFLI. Relative to Illinois, parents at the California site reported no change from before to after PFLI in taking at least 1 day of leave (difference of differences, -3%; 95% confidence interval [CI], -13% to 7%); taking at least 4 weeks of leave (1%; 95% CI, -9% to 10%); or not missing work, despite believing their child's illness necessitated it (-1%; 95% CI, -13% to 10%). Only 77 parents (18%) had heard of PFLI approximately 18 months after the program began, and only 20 (5%) had used it. Even among parents without other access to paid leave, awareness and use of PFLI were minimal. Parents of children with special health care needs receiving care at a California hospital were generally unaware of PFLI and rarely used it. Among parents of children with special health care needs, taking leave in California did not

  18. Primary care access for mental illness in Australia: Patterns of access to general practice from 2006 to 2016.

    Science.gov (United States)

    Farrer, Louise M; Walker, Jennie; Harrison, Christopher; Banfield, Michelle

    2018-01-01

    General practice has an important role within the Australian healthcare system to provide access to care and effective management of chronic health conditions. However, people with serious mental illness experience challenges associated with service access. The current paper seeks to examine drivers of access to general practice for people with common and serious mental disorders, compared with people who access care for type II diabetes, a common physical health problem managed in general practice. The Bettering the Evaluation and Care of Health (BEACH) programme provides the most comprehensive and objective measurement of general practitioner activity in Australia. Using BEACH data, this study compared general practice encounters for depression, anxiety, bipolar disorder, schizophrenia, and type II diabetes during a 10-year period between 2006 and 2016. Analysis revealed more frequent encounters for depression compared to anxiety, and a higher representation of women in encounters for bipolar disorder compared to men. The relationship between number of encounters and patient age was strongly associated with the life course and mortality characteristics associated with each disorder. The findings highlight specific challenges associated with access to primary care for people with serious mental illness, and suggest areas of focus to improve the ability of these patients to access and navigate the health system.

  19. Homesick: residential and care patterns in patients with severe mental illness

    NARCIS (Netherlands)

    de Mooij, Liselotte D.; Kikkert, Martijn; Lommerse, Nick M.; Theunissen, Jan; de Koning, Mariken B.; de Haan, Lieuwe; Beekman, Aartjan T. F.; Duurkoop, Pim W. R. A.; Dekker, Jack J. M.

    2016-01-01

    Changes in the residential and care settings of patients with severe mental illness (SMI) are a concern because of the large variety of possible negative consequences. This study describes patterns of changes in the residential and care settings of SMI patients and explores associations between

  20. Practical recommendations for improvement of the physical health care of patients with severe mental illness

    NARCIS (Netherlands)

    van Hasselt, F. M.; Oud, M. J. T.; Loonen, A. J. M.

    ObjectiveHealth care for the physical health of patients with severe mental illness (SMI) needs to be improved. Therefore, we aimed to develop policy recommendations to improve this physical health care in the Netherlands based on consensus (general agreement) between the major stakeholders. MethodA

  1. Caring for homeless persons with serious mental illness in general hospitals.

    Science.gov (United States)

    Bauer, Leah K; Baggett, Travis P; Stern, Theodore A; O'Connell, Jim J; Shtasel, Derri

    2013-01-01

    The care of homeless persons with serious mental illness remains a common and challenging problem in general hospital settings. This article aims to review data on homelessness and its psychiatric comorbidities, and to expand the skills of providers who encounter homeless individuals in general hospital settings. Literature review reveals patient, provider, and systems factors that contribute to suboptimal health outcomes in homeless individuals. Diagnostic rigor, integrated medical and psychiatric care, trauma-informed interventions, special considerations in capacity evaluations, and health care reform initiatives can improve the treatment of homeless persons with serious mental illness. Copyright © 2013 The Academy of Psychosomatic Medicine. Published by Elsevier Inc. All rights reserved.

  2. Psychosocial well-being in young adults with chronic illness since childhood: the role of illness cognitions

    NARCIS (Netherlands)

    Verhoof, Eefje J. A.; Maurice-Stam, Heleen; Heymans, Hugo S. A.; Evers, Andrea W. M.; Grootenhuis, Martha A.

    2014-01-01

    Background: More and more pediatric patients reach adulthood. Some of them are successfully integrating in adult life, but many others are not. Possibly Illness cognitions (IC) - the way people give meaning to their illness/disability - may play a role in individual differences on long-term

  3. Health information technology: transforming chronic disease management and care transitions.

    Science.gov (United States)

    Rao, Shaline; Brammer, Craig; McKethan, Aaron; Buntin, Melinda B

    2012-06-01

    Adoption of health information technology (HIT) is a key effort in improving care delivery, reducing costs of health care, and improving the quality of health care. Evidence from electronic health record (EHR) use suggests that HIT will play a significant role in transforming primary care practices and chronic disease management. This article shows that EHRs and HIT can be used effectively to manage chronic diseases, that HIT can facilitate communication and reduce efforts related to transitions in care, and that HIT can improve patient safety by increasing the information available to providers and patients, improving disease management and safety. Copyright © 2012 Elsevier Inc. All rights reserved.

  4. Implementing Evidenced Based Oral Care for Critically Ill Patients

    Science.gov (United States)

    2016-02-28

    practice . In G. LoBiondo-Wood & J Haber (Eds.), Nursing Research (5th ed.). St. Louis: Mosby-Year Book , Inc. 5. Titler, M., & Everett, L. (2001...determined if an evidence-based oral care program resulted in increased nurses’ knowledge and improved oral care practices compliance. Design: The project...process, and project specific oral care evidence-based practice instruction. Knowledge evaluations were conducted at three time points: before, immediately

  5. Therapeutic Plasma Exchange in Critically Ill Children Requiring Intensive Care.

    Science.gov (United States)

    Cortina, Gerard; McRae, Rosemary; Chiletti, Roberto; Butt, Warwick

    2018-02-01

    To characterize the clinical indications, procedural safety, and outcome of critically ill children requiring therapeutic plasma exchange. Retrospective observational study based on a prospective registry. Tertiary and quaternary referral 30-bed PICU. Forty-eight critically ill children who received therapeutic plasma exchange during an 8-year period (2007-2014) were included in the study. Therapeutic plasma exchange. A total of 48 patients underwent 244 therapeutic plasma exchange sessions. Of those, therapeutic plasma exchange was performed as sole procedure in 193 (79%), in combination with continuous renal replacement therapy in 40 (16.4%) and additional extracorporeal membrane oxygenation in 11 (4.6%) sessions. The most common admission diagnoses were hematologic disorders (30%), solid organ transplantation (20%), neurologic disorders (20%), and rheumatologic disorders (15%). Complications associated with the procedure occurred in 50 (21.2%) therapeutic plasma exchange sessions. Overall, patient survival from ICU was 82%. Although patients requiring therapeutic plasma exchange alone (n = 31; 64%) had a survival rate of 97%, those with additional continuous renal replacement therapy (n = 13; 27%) and extracorporeal membrane oxygenation (n = 4; 8%) had survival rates of 69% and 50%, respectively. Factors associated with increased mortality were lower Pediatric Index of Mortality 2 score, need for mechanical ventilation, higher number of failed organs, and longer ICU stay. Our results indicate that, in specialized centers, therapeutic plasma exchange can be performed relatively safely in critically ill children, alone or in combination with continuous renal replacement therapy and extracorporeal membrane oxygenation. Outcome in children requiring therapeutic plasma exchange alone is excellent. However, survival decreases with the number of failed organs and the need for continuous renal replacement therapy and extracorporeal membrane oxygenation.

  6. [Chronic home-care patients and their primary health care environment].

    Science.gov (United States)

    Bilbao Curiel, I; Gastaminza Santacoloma, A M; García García, J A; Quindimil Vázquez, J A; López Rivas, J L; Huidobro Fernández, L

    1994-03-15

    Describing the primary level of attention to chronic home patients (CHP), their quality or life and the one of their home carers. Descriptive transverse study. Teaching Unit of Family of Sestao (Vizcaya) urban environment. 197 CHP patients with subacute, chronic illnesses or in terminal stages or handicapped, that is to say, people who cannot attend the Medical Centre and needing constant home care (longer than 4 weeks) although they do not need to be in hospital at the moment. A questionnaire made up by the researching group. April-June 1992. The clinical histories and home interviews. Mean age (78 +/- 23) years old; 70% were women; average of health problems of patients (4.2 +/- 4); average of drug consumption by patients (3.6 +/- 4); average of one visit to each patient per two months; 75% did not need derivation. The average age of people looking after them was (58 +/- 28) years old and 77.3% of them were women. Their average QL index was (9 +/- 2.4) out of 10, 9.2% had a QL index between 4 and 7 although there was nobody under 3. We have found an old population, mostly women with an average of health problems of (4.24 +/- 4) and who are polymedicated. 9.4 of them are not looked after by anybody. Generally their homes are habitable enough. In 77.3% of the cases the carers are women and 65.6% do not receive any domiciliary help.

  7. Labor, social exclusion, and chronic muscular illness: the case of mid-impoverished sectors in a peripheral neighborhood in Madrid, Spain.

    Science.gov (United States)

    Betrisey, Débora

    2009-01-01

    This study analyzes the combination of different and differing representations and care practices that social groups belonging to a mid-impoverished sector of Madrid use to alleviate chronic muscular pain, as well as the consequences that this has for both domestic and work life. I collected empirical evidence in a peripheral neighborhood of Madrid during 2004 using a number of anthropological methods such as participant observation, in-depth interviews, and life-history interviews. The following results can be singled out from the completed investigation: in the context of social impoverishment there are macrostructural factors that are transformed into health-destructive processes that influence the development and incidence of chronic muscular illness. This requires the different social groups that are suffering from this to establish a number of care practices mainly based on the use of Western medicine as well as other medical traditions of self-care. These practices relate to economic, educational, sociocultural, and ideological factors that characterize the lives of these individuals. This essay focuses on perceptions of illness and care practices beyond the biomedical context, as it addresses those representations and practices that these impoverished social groups display in accordance with their way of life and in relation to their ailments.

  8. Characteristics of acute febrile illness and determinants of illness recovery among adults presenting to Singapore primary care clinics

    Directory of Open Access Journals (Sweden)

    Zaw Myo Tun

    2016-10-01

    Full Text Available Abstract Background Undifferentiated acute febrile illness (AFI is a common presentation among adults in primary care settings in Singapore but large gaps exist in the understanding of the characteristics of these patients. We studied clinical and epidemiological characteristics of AFI patients and factors associated with delayed recovery from AFI. Methods We performed a secondary data analysis using data from the Early DENgue infection and outcome (EDEN study on 2046 adult patients presenting at 5 Singapore polyclinics between December 2007 and February 2013 with a history of fever (≥38 °C for less than 72 h. We used an accelerated failure time model to investigate factors associated with delayed recovery from AFI. Results The mean age of patients was 36.6 years, 65 % were male, 51 % were of Chinese ethnicity, and 75 % lived in public housing. Median illness duration was 5 days (interquartile range, 3–7. In multivariable analysis, the unemployed and white collar workers had longer illness duration compared with blue collar workers (time ratio (TR, 1.10; 95 % confidence interval (CI, 1.03–1.17 and TR, 1.08; 95 % CI, 1.02–1.15, respectively. Patients with more symptoms at initial consultation had slower recovery (TR, 1.03 per additional symptom; 95 % CI, 1.02–1.03. Other clinical factors were also associated with longer duration of illness, including use of analgesics (TR, 1.21; 95 % CI, 1.15–1.28; use of cough medicines (TR, 1.14; 95 % CI, 1.08–1.20; use of antibiotics (TR, 1.14; 95 % CI, 1.07–1.21; and hospitalization (TR, 1.59; 95 % CI, 1.39–1.82. Compared to patients with normal WBC count at first consultation, those with low WBC count had slower recovery (TR, 1.14; 95 % CI, 1.07–1.21, while the reverse was observed among patients with high WBC count (TR, 0.94; 95 % CI, 0.88–1.00. Conclusions Differences in illness duration among different types of employment may reflect differences in their underlying

  9. A Recommendation for the Management of Illness Anxiety Disorder Patients Abusing the Health Care System

    OpenAIRE

    Almalki, Mohammad; Al-Tawayjri, Ibrahim; Al-Anazi, Ahmed; Mahmoud, Sami; Al-Mohrej, Ahmad

    2016-01-01

    Introduction. Illness anxiety disorder (IAD) entails a preoccupation with having a serious, undiagnosed illness in which somatic symptoms are, if present, mild in intensity (American Psychiatric Association, 2013). Case Report. This is a case of seventy-three-year-old Saudi man who started visiting the primary health care center around twenty-five years ago. With concerns of having cancer, the patient continuously visited the hospital, costing over $170,000. Throughout this period, the patien...

  10. Sexual behavior, body image, and partnership in chronic illness: a comparison of Huntington's disease and multiple sclerosis.

    Science.gov (United States)

    Reininghaus, Eva; Reininghaus, Bernd; Fitz, Werner; Hecht, Karen; Bonelli, Raphael Maria

    2012-08-01

    Huntington's disease (HD) and multiple sclerosis (MS) are both chronic progressive illnesses posing a serious challenge to affected patients and families. Sexual dysfunction in HD as well as in MS is a very common problem, although it is unclear whether the dysfunction is caused by the chronic illness itself or by the sociopsychiatric burden related to the illness. Twenty-nine patients with HD and 27 patients with MS each participated in a semistructured interview and several standardized questionnaires concerning partnership, sexual function, and body image. The results display significant differences in both patient groups, displaying higher sexual desire and activity in HD patients, but MS patients also reported fewer sexual problems compared to the norming values. Conversely, the MS patients' relationships seemed to be stable despite subjectively perceived lower initiative on sexual activities. The results are discussed under the possible influences of the underlying organic changes and the psychosocial consequences of chronic progressive disorders.

  11. Attitude about mental illness of health care providers and community leaders in rural Haryana, North India

    Directory of Open Access Journals (Sweden)

    Harshal Ramesh Salve

    2014-12-01

    Full Text Available Background: Attitude about mental illness determines health seeking of the people. Success of National Mental Health Programme (NMHP is dependent on attitude about mental illness of various stakeholders in the programme. Material & Methods: A community based cross-sectional study was carried out in Ballabgarh block of Faridabad district in Haryana. We aimed to study attitude about mental illness of various stakeholders of health care providers (HCP, community leaders in rural area of Haryana, north India. Study area consisting of five Primary Health Centers (PHCs serving 2,12,000 rural population. All HCP working at PHCs, Accredited Social Health Activist (ASHA and community leaders in study area were approached for participation. Hindi version of Opinion about Mental illness Scale for Chinese Community (OMICC was used to study attitude. Results: In total, 467 participants were participated in the study. Of which, HCP, ASHAs and community leaders were 81 (17.4%, 145 (31.0% and 241 (51.6% respectively. Community members reported socially restrictive, pessimistic and stereotyping attitude towards mentally ill person. ASHA and HCP reported stereotyping attitude about person with mental illness. None of the stakeholders reported stigmatizing attitude. Conclusion: Training programme focusing on spectrum of mental illness for HCP and ASHA working in rural area under NMHP programme is needed. Awareness generation of community leaders about bio-medical concept of mental illness is cornerstone of NMHP success in India.

  12. Patient-centered care in chronic disease management: a thematic analysis of the literature in family medicine.

    Science.gov (United States)

    Hudon, Catherine; Fortin, Martin; Haggerty, Jeannie; Loignon, Christine; Lambert, Mireille; Poitras, Marie-Eve

    2012-08-01

    The objective was to provide a synthesis of the results of the research and discourse lines on main dimensions of patient-centered care in the context of chronic disease management in family medicine, building on Stewart et al.'s model. We developed search strategies for the Medline, Embase, and Cochrane databases, from 1980 to April 2009. All articles addressing patient-centered care in the context of chronic disease management in family medicine were included. A thematic analysis was performed using mixed codification, based on Stewart's model of patient-centered care. Thirty-two articles were included. Six major themes emerged: (1) starting from the patient's situation; (2) legitimizing the illness experience; (3) acknowledging the patient's expertise; (4) offering realistic hope; (5) developing an ongoing partnership; (6) providing advocacy for the patient in the health care system. The context of chronic disease management brings forward new dimensions of patient-centered care such as legitimizing the illness experience, acknowledging patient expertise, offering hope and providing advocacy. Chronic disease management calls for the adaptation of the family physician's role to patients' fluctuating needs. Literature also suggests the involvement of the family physician in care transitions as a component of patient-centered care. Crown Copyright © 2012. Published by Elsevier Ireland Ltd. All rights reserved.

  13. health care seeking behavior for common childhood illnesses

    African Journals Online (AJOL)

    tsion

    importance in areas where access to health services is limited (3, 7). ... and utilization of health care facilities remains low. Only 63% ... Lowland. According to information obtained from the ... The proposal was ethically reviewed and approved.

  14. Reported barriers to evaluation in chronic care

    DEFF Research Database (Denmark)

    Knai, Cécile; Nolte, Ellen; Brunn, Matthias

    2013-01-01

    The growing movement of innovative approaches to chronic disease management in Europe has not been matched by a corresponding effort to evaluate them. This paper discusses challenges to evaluation of chronic disease management as reported by experts in six European countries....

  15. Physical health care for people with mental illness: training needs for nurses.

    Science.gov (United States)

    Happell, Brenda; Platania-Phung, Chris; Scott, David

    2013-04-01

    People diagnosed with serious mental illness have higher rates of physical morbidity and decreased longevity, yet these people are not adequately served by health care systems. Nurses may provide improved physical health support to consumers with serious mental illness but this is partly dependent on nurses having necessary skills and interest in training opportunities for this component of their work. This survey investigated Australian nurses' interest in training across areas of physical health care including lifestyle factors, cardiovascular disease, and identifying health risks. A nation-wide online survey of nurse members of the Australian College of Mental Health Nurses. The survey included an adapted version of a sub-section of the Physical Health Attitudes Scale. Participants were asked to indicate their interest in various aspects of physical health care training. Most (91.6%) participants viewed educating nurses in physical health care as of moderate or significant value in improving the physical health of people with serious mental illness. Interest in training in all areas of physical health care was over 60% across the health care settings investigated (e.g. public, private, primary care). Forty-two percent sought training in all nine areas of physical health care, from supporting people with diabetes, to assisting consumers with sexually-related and lifestyle issues. The findings suggest that nurses in mental health services in Australia acknowledge the importance of training to improve physical health care of consumers with serious mental illness. Training programs and learning opportunities for nurses are necessary to reduce inequalities in health of people with serious mental illness. Copyright © 2013. Published by Elsevier Ltd.

  16. How do macro-level contexts and policies affect the employment chances of chronically ill and disabled people? Part II: The impact of active and passive labor market policies

    DEFF Research Database (Denmark)

    Holland, Paula; Nylén, Lotta; Thielen, Karsten

    2011-01-01

    level for men and women in Canada, Denmark, Norway, Sweden, and the United Kingdom, countries with advanced social welfare systems and universal health care but with varying types of active and passive labor market policies. People with chronic illness were found to fare better in employment terms...... in the Nordic countries than in Canada or the United Kingdom. Their employment chances also varied by educational level and country. The employment impact of having both chronic illness and low education was not just additive but synergistic. This amplification was strongest for British men and women, Norwegian...... men, and Danish women. Hypotheses on the disincentive effects of tighter employment regulation or more generous welfare benefits were not supported. The hypothesis that greater investments in active labor market policies may improve the employment of chronically ill people was partially supported...

  17. Impact of Chronic Conditions on the Cost of Cancer Care...

    Data.gov (United States)

    U.S. Department of Health & Human Services — According to findings reported in Impact of Chronic Conditions on the Cost of Cancer Care for Medicaid Beneficiaries, published in Volume 2, Issue 4 of the Medicare...

  18. Double jeopardy: assessing the association between internal displacement, housing quality and chronic illness in a low-income neighborhood.

    Science.gov (United States)

    Habib, Rima R; Yassin, Nasser; Ghanawi, Joly; Haddad, Pascale; Mahfoud, Ziyad

    2011-04-01

    PURPOSE: This study analyzed associations between war-related internal displacement, housing quality and the prevalence of chronic illness in Nabaa, a low-income neighborhood on the outskirts of Beirut, Lebanon. METHODS: A cross-sectional survey of sociodemographics, household characteristics and health conditions of the study population was carried out in 2002. Using a structured questionnaire, the research team surveyed 1,151 households representing 4,987 residents of all ages. The survey was administered to a proxy respondent from each household in face-to-face interviews. A multiple logistic regression model using the generalized estimation equation method was constructed to assess the simultaneous effect of displacement and housing quality on reported ill health, while adjusting for potential confounders. RESULTS: Housing quality and internal displacement were strongly associated with occurrences of chronic illness. The most vulnerable respondents were older residents, females and internally displaced people, who reported high rates of chronic illnesses. Residents with high levels of education were less likely to report a chronic illness than those that had elementary education or less. CONCLUSION: Nabaa residents' experience of poor health was associated with inadequate housing quality. Moreover, residents who have been displaced experience worse living conditions and were more likely to experience poor health than those who were not displaced. These results reveal a need for policies to improve housing quality and alleviate war-related consequences in low-income neighborhoods.

  19. A theoretical lens for revealing the complexity of chronic care

    NARCIS (Netherlands)

    Borgermans, L.; de Maeseneer, J.; Wollersheim, H.; Vrijhoef, H.J.M.; Devroey, D.

    2013-01-01

    The increasing prevalence of co-occurring multiple chronic conditions in an aging population has influenced the debate on complexity in chronic care and nowadays provides an impetus to the reform of numerous health systems. This article presents a theoretical lens for understanding the complexity of

  20. Effectiveness of neurofeedback therapy for anxiety and stress in adults living with a chronic illness: a systematic review protocol.

    Science.gov (United States)

    Blaskovits, Farriss; Tyerman, Jane; Luctkar-Flude, Marian

    2017-07-01

    The objective of this review is to systematically examine the effectiveness of neurofeedback therapy for managing anxiety and stress in adults living with a chronic illness.The specific objectives are to identify which neurofeedback systems and/or protocols demonstrate effectiveness and determine the level of supporting evidence.The review question is as follows: What is the effectiveness of neurofeedback therapy for managing anxiety and stress in an adult population aged 18 years of age or older living with a chronic illness?

  1. Comparative effectiveness trial of family-supported smoking cessation intervention versus standard telephone counseling for chronically ill veterans using proactive recruitment

    Directory of Open Access Journals (Sweden)

    Bastian LA

    2012-09-01

    Full Text Available Lori A Bastian,1–3 Laura J Fish,4 Jennifer, M Gierisch,3,5 Lesley D Rohrer,3 Karen M Stechuchak,3 Steven C Grambow3,61Veterans Affairs Connecticut, West Haven, CT, USA; 2Department of Medicine, University of Connecticut Health Center, Farmington, CT, USA; 3Center for Health Services Research in Primary Care, Durham Veterans Affairs Medical Center, Durham, NC, USA; 4Duke Comprehensive Cancer Center, 5Department of Medicine, 6Department of Biostatistics and Bioinformatics, Duke University Medical Center, Durham, NC, USAObjectives: Smoking cessation among patients with chronic medical illnesses substantially decreases morbidity and mortality. Chronically ill veteran smokers may benefit from interventions that assist them in harnessing social support from family and friends.Methods: We proactively recruited veteran smokers who had cancer, cardiovascular disease, or other chronic illnesses (diabetes, chronic obstructive pulmonary disease, hypertension and randomized them to either standard telephone counseling or family-supported telephone counseling focused on increasing support for smoking cessation from family and friends. Participants each received a letter from a Veterans Affairs physician encouraging them to quit smoking, a self-help cessation kit, five telephone counseling sessions, and nicotine replacement therapy, if not contraindicated. The main outcome was 7-day point prevalent abstinence at 5 months.Results: We enrolled 471 participants with mean age of 59.2 (standard deviation [SD] = 7.9 years. 53.0% were white, 8.5% were female, and 55.4% were married/living as married. Overall, 42.9% had cardiovascular disease, 34.2% had cancer, and 22.9% had other chronic illnesses. At baseline, participants were moderately dependent on cigarettes as measured by the Heaviness of Smoking Index (mean = 2.8, SD = 1.6, expressed significant depressive symptoms as measured by the Center for Epidemiological Studies Depression scale (54.8% > 10, and

  2. Care burden of parents of adult children with mental illness: The role of associative stigma.

    Science.gov (United States)

    Park, Keunwoo; Seo, Mikyung

    2016-10-01

    Parents of offspring with mental illness must endure endless child care burden despite their old age, and must cope with associative stigma. This study analyzed the mediator effect of associative stigma on relationships between the main stressors, psychiatric symptoms and lowered social function of offspring with mental illness, assessed by the parents, and their care burden. 215 parents caring for an adult child with mental illness in Korea were surveyed (Mage=60.68, SD=13.58; 74.4% mothers). They were asked to assess the psychiatric symptoms and social function of their offspring, the stigma they experienced, and the objective/subjective care burdens they felt. Our findings suggest that the symptoms and function of offspring directly affect the care burden of parents, but also have an indirect effect mediated by associative stigma. Among the predictor variables, symptoms have a greater effect on the subjective/objective burden and associative stigma than social function. We suggest strategies for parents to overcome associative stigma and emphasize the professional endeavor required to meet the service needs of elderly parents taking care of an adult child with mental illness. Copyright © 2016 Elsevier Inc. All rights reserved.

  3. Identification of mechanisms enabling integrated care for patients with chronic diseases: a literature review

    Directory of Open Access Journals (Sweden)

    Denise van der Klauw

    2014-07-01

    Full Text Available Introduction: Notwithstanding care for chronically ill patients requires a shift towards care that is well coordinated and focused on prevention and self-care, the concept of integrated care lacks specificity and clarity. This article presents a literature review to identify mechanisms for achieving integrated care objectives.Theory and methods: Existing models often present a large variety of dimensions, archetypes and categories of integration without specifying them. Models and programmes describing integrated care for chronic diseases were reviewed. Data were extracted related to objectives and clusters of mechanisms of integration.Results: Thirty-four studies presented four objectives: functional, organisational, professional and service integration. We categorised approaches and interventions to achieve these objectives by strategy and clusters of ‘mechanisms of integration’: degree, patient centredness and normative aspects.Conclusions and discussion: The clarification of mechanisms to achieve objectives of integrated care as presented may be used as starting point for the development and refinement of integrated care programmes, including methodological grounding of their evaluation. Given that most studies reviewed lack both empirical data and descriptions of the methods used, future research needs to close these gaps. Validation of the findings by a large panel of experts is suggested as recommendation to work towards a grounded framework.

  4. Illness representations as mediators of the relationship between dispositional optimism and depression in patients with chronic tinnitus: A cross-sectional study.

    NARCIS (Netherlands)

    Vollmann, Manja; Scharloo, Margreet; Langguth, Berthold; Kalkouskaya, Natallia; Salewski, Christel

    2014-01-01

    Objective: Both dispositional optimism and illness representations are related to psychological health in chronic patients. In a group of chronic tinnitus sufferers, the interplay between these two variables was examined. Specifically, it was tested to what extent the relationship between

  5. Infectious diseases and chronic care in Africa

    African Journals Online (AJOL)

    . Benvinda XP, Bruno P. Emotional distress in An- golan patients with several types of tuberculosis. Afri. Health Sci. 2015; 15(2):378-384. 9. Mohammed S, Nagla S, Morten S, Asma E, Arja. A. Illness perceptions and quality of life among tuber-.

  6. Economic Activities, Illness Pattern and Utilisation of Health Care Facilities in the Rural Population of Kwazulu-Natal, South Africa

    Science.gov (United States)

    2009-01-01

    ABSTRACT Background The study was undertaken among the rural and black communities of the Uthungulu health district of the KwaZulu-Natal province, South Africa. Method A cross-sectional community-based descriptive study was conducted. A multi-stage sampling strategy was adopted to obtain a representative sample of the communities. Results The mean age of the population was 27 years and majority was female (54%). Among the adult population only 30% were educated, 19% were engaged in some form of economic activities while 9% were in the formal employment sector. The average monthly income per household was R1 301 (95% CI, R1 283; R1 308). The illnesses were reported by 27% of the total population over a period of one month. Notably higher rates of female individuals (29%) were sick compared to males (24%, p < 0.001). The rates of illnesses among adult females (39%) were also significantly higher than among males (31%, p < 0.009). Most of them (69%) attended primary health care (PHC) clinics for medical services, while 67% reported chronic conditions. Age (OR = 1.4), gender (OR = 0.711), education (OR = 0.64) and economic activities (OR = 1.9) were found to be associated with being ill or not. Conclusion The rural black communities are underdeveloped and deprived, which results in higher prevalence of illnesses; however, the utilisation of PHC facilities is comparatively higher than in the rest of the province and other parts of the country. Interventions to improve community health care services among the deprived population should be focused through public health strategies such as all-encompassing PHC that includes health promotion, education and basic essential amenities.

  7. Physician office vs retail clinic: patient preferences in care seeking for minor illnesses.

    Science.gov (United States)

    Ahmed, Arif; Fincham, Jack E

    2010-01-01

    Retail clinics are a relatively new phenomenon in the United States, offering cheaper and convenient alternatives to physician offices for minor illness and wellness care. The objective of this study was to investigate the effects of cost of care and appointment wait time on care-seeking decisions at retail clinics or physician offices. As part of a statewide random-digit-dial survey of households, adult residents of Georgia were interviewed to conduct a discrete choice experiment with 2 levels each of 4 attributes: price ($59; $75), appointment wait time (same day; 1 day or longer), care setting-clinician combination (nurse practitioner in retail clinic; physician in private office), and acute illness (urinary tract infection [UTI]; influenza). The respondents indicated whether they would seek care under each of the 16 resulting choice scenarios. A cooperation rate of 33.1% yielded 493 completed telephone interviews. The respondents preferred to seek care for both conditions; were less likely to seek care for UTI (beta = -0.149; P = .008); preferred to seek care from a physician (beta = 1.067; P clinic and $82.12 to wait 1 day or more. Time and cost savings offered by retail clinics are attractive to patients, and they are likely to seek care there given sufficient cost savings. Appointment wait time is the most important factor in care-seeking decisions and should be considered carefully in setting appointment policies in primary care practices.

  8. Perceived stereotyping and seeking care for chronic vulvar pain.

    Science.gov (United States)

    Nguyen, Ruby H N; Turner, Rachael M; Rydell, Sarah A; Maclehose, Richard F; Harlow, Bernard L

    2013-10-01

    We examined stereotyping of chronic pain sufferers among women aged 18-40 years and determined whether perceived stereotyping affects seeking care for women with chronic vulvar pain. Cross-sectional study using a community-based survey of vulvodynia asking if "Doctors think that people with chronic pain exaggerate their pain," and if "People believe that vulvar pain is used as an excuse to avoid having sex". Twelve thousand eight hundred thirty-four women aged 18-40 years in metropolitan Minneapolis/St. Paul, Minnesota. Women were considered to have a history of chronic vulvar pain if they reported vulvar burning lasting more than 3 months or vulvar pain on contact. Four thousand nine hundred eighty-seven (38.9%) women reported a chronic pain condition; 1,651 had chronic vulvar pain. Women experiencing chronic pain were more likely than those without to perceive stereotyping from both doctors and others; a dose-response with the number of pain conditions existed. Women with chronic vulvar pain were more likely to believe that people think vulvar pain is an excuse to avoid intercourse. Half of the women with chronic vulvar pain did not seek medical care for it; of these, 40.4% perceived stereotyping from doctors. However, it was women who actually sought care (45.1%) who were more likely to feel stigmatized by doctors (adjusted relative risk = 1.11, 95% confidence interval: 1.01-1.23). Perceived negative stereotyping among chronic pain sufferers is common, particularly negative perceptions about physicians. In fact, chronic vulvar pain sufferers who felt stigmatized were more likely to have sought care than those who did not feel stigmatized. Wiley Periodicals, Inc.

  9. Applying the chronic care model to an employee benefits program: a qualitative inquiry.

    Science.gov (United States)

    Schauer, Gillian L; Wilson, Mark; Barrett, Barbara; Honeycutt, Sally; Hermstad, April K; Kegler, Michelle C

    2013-12-01

    To assess how employee benefits programs may strengthen and/or complement elements of the chronic care model (CCM), a framework used by health systems to improve chronic illness care. A qualitative inquiry consisting of semi-structured interviews with employee benefit administrators and partners from a self-insured, self-administered employee health benefits program was conducted at a large family-owned business in southwest Georgia. Results indicate that the employer adapted and used many health system-related elements of the CCM in the design of their benefit program. Data also suggest that the employee benefits program contributed to self-management skills and to informing and activating patients to interact with the health system. Findings suggest that employee benefits programs can use aspects of the CCM in their own benefit design, and can structure their benefits to contribute to patient-related elements from the CCM.

  10. Disease management projects and the Chronic Care Model in action: baseline qualitative research

    Science.gov (United States)

    2012-01-01

    Background Disease management programs, especially those based on the Chronic Care Model (CCM), are increasingly common in the Netherlands. While disease management programs have been well-researched quantitatively and economically, less qualitative research has been done. The overall aim of the study is to explore how disease management programs are implemented within primary care settings in the Netherlands; this paper focuses on the early development and implementation stages of five disease management programs in the primary care setting, based on interviews with project leadership teams. Methods Eleven semi-structured interviews were conducted at the five selected sites with sixteen professionals interviewed; all project directors and managers were interviewed. The interviews focused on each project’s chosen chronic illness (diabetes, eating disorders, COPD, multi-morbidity, CVRM) and project plan, barriers to development and implementation, the project leaders’ action and reactions, as well as their roles and responsibilities, and disease management strategies. Analysis was inductive and interpretive, based on the content of the interviews. After analysis, the results of this research on disease management programs and the Chronic Care Model are viewed from a traveling technology framework. Results This analysis uncovered four themes that can be mapped to disease management and the Chronic Care Model: (1) changing the health care system, (2) patient-centered care, (3) technological systems and barriers, and (4) integrating projects into the larger system. Project leaders discussed the paths, both direct and indirect, for transforming the health care system to one that addresses chronic illness. Patient-centered care was highlighted as needed and a paradigm shift for many. Challenges with technological systems were pervasive. Project leaders managed the expenses of a traveling technology, including the social, financial, and administration involved

  11. Disease management projects and the Chronic Care Model in action: baseline qualitative research.

    Science.gov (United States)

    Walters, Bethany Hipple; Adams, Samantha A; Nieboer, Anna P; Bal, Roland

    2012-05-11

    Disease management programs, especially those based on the Chronic Care Model (CCM), are increasingly common in The Netherlands. While disease management programs have been well-researched quantitatively and economically, less qualitative research has been done. The overall aim of the study is to explore how disease management programs are implemented within primary care settings in The Netherlands; this paper focuses on the early development and implementation stages of five disease management programs in the primary care setting, based on interviews with project leadership teams. Eleven semi-structured interviews were conducted at the five selected sites with sixteen professionals interviewed; all project directors and managers were interviewed. The interviews focused on each project's chosen chronic illness (diabetes, eating disorders, COPD, multi-morbidity, CVRM) and project plan, barriers to development and implementation, the project leaders' action and reactions, as well as their roles and responsibilities, and disease management strategies. Analysis was inductive and interpretive, based on the content of the interviews. After analysis, the results of this research on disease management programs and the Chronic Care Model are viewed from a traveling technology framework. This analysis uncovered four themes that can be mapped to disease management and the Chronic Care Model: (1) changing the health care system, (2) patient-centered care, (3) technological systems and barriers, and (4) integrating projects into the larger system. Project leaders discussed the paths, both direct and indirect, for transforming the health care system to one that addresses chronic illness. Patient-centered care was highlighted as needed and a paradigm shift for many. Challenges with technological systems were pervasive. Project leaders managed the expenses of a traveling technology, including the social, financial, and administration involved. At the sites, project leaders served

  12. Beliefs about health, illness and acceptance of the limitations of chronic somatic disease inpeople w