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Sample records for chronic illness self-management

  1. 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.

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

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    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.

  3. 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

  4. 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.

  5. 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.

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

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    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.

  7. 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

  8. 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

  9. 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

  10. 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.

  11. 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.

  12. 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

  13. [Effects of a Multi-disciplinary Approached, Empowerment Theory Based Self-management Intervention in Older Adults with Chronic Illness].

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    Park, Chorong; Song, Misoon; Cho, Belong; Lim, Jaeyoung; Song, Wook; Chang, Heekyung; Park, Yeon-Hwan

    2015-04-01

    The purpose of this study was to develop a multi-disciplinary self-management intervention based on empowerment theory and to evaluate the effectiveness of the intervention for older adults with chronic illness. A randomized controlled trial design was used with 43 Korean older adults with chronic illness (Experimental group=22, Control group=21). The intervention consisted of two phases: (1) 8-week multi-disciplinary, team guided, group-based health education, exercise session, and individual empowerment counseling, (2) 16-week self-help group activities including weekly exercise and group discussion to maintain acquired self-management skills and problem-solving skills. Baseline, 8-week, and 24-week assessments measured health empowerment, exercise self-efficacy, physical activity, and physical function. Health empowerment, physical activity, and physical function in the experimental group increased significantly compared to the control group over time. Exercise self-efficacy significantly increased in experimental group over time but there was no significant difference between the two groups. The self-management program based on empowerment theory improved health empowerment, physical activity, and physical function in older adults. The study finding suggests that a health empowerment strategy may be an effective approach for older adults with multiple chronic illnesses in terms of achieving a sense of control over their chronic illness and actively engaging self-management.

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

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    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.

  15. [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.

  16. Web-based, self-management enhancing interventions with e-diaries and personalized feedback for persons with chronic illness: a tale of three studies.

    NARCIS (Netherlands)

    Nes, A.A.G.; Eide, H.; Kristjánsdóttir, O.B.; Dulmen, S. van

    2013-01-01

    Objective: Chronic illness places high demands on patients. Interventions supporting self-management and providing personalized feedback might help patients to gain new perspectives and enhance use of constructive self-management strategies. We developed three comparable web-based CBT-grounded

  17. Cost of illness for chronic stable angina patients enrolled in a self-management education trial

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    McGillion, Michael; Croxford, Ruth; Watt-Watson, Judy; LeFort, Sandra; Stevens, Bonnie; Coyte, Peter

    2008-01-01

    BACKGROUND: Chronic stable angina (CSA) is a major debilitating health problem in Canada. A paucity of relevant cardiovascular data sets has precluded a detailed examination of the impact of interventions on CSA-related costs and its broader economic burden. OBJECTIVES: As part of a larger clinical trial, the authors sought to determine the short-term impact of a standardized self-management training program on CSA-related costs. A secondary objective was to estimate the total annualized cost of CSA per patient from a societal perspective. METHODS: Pre- and three-month post-test cost data were collected on 117 participants using the Ambulatory Home Care Record. Mean annualized direct, indirect and system-related CSA costs (2003 to 2005) were estimated; total per-patient CSA costs from a societal perspective were calculated as the sum of these costs. RESULTS: The mean (± SD) age of participants was 68±11 years; 80% were male. The program did not impact costs in the short-term. Direct annual out-of-pocket costs, including money paid for health care, travel to appointments, medication, equipment and home support totaled $3,267. Indirect costs, reflecting the value of all unpaid time spent by those engaged in angina-related care, were $12,963. System costs, including costs paid by public and private insurers, were $2,979. Total estimated annual CSA costs from a societal perspective were $19,209 per patient. CONCLUSIONS: These data suggest that CSA imposes a major economic burden, comparable with other prevalent conditions such as chronic noncancer pain. Advancements in self-management training research are needed to help reduce the economic burden of CSA in Canada. PMID:18841254

  18. Self-management of chronic illness: the role of 'habit' versus reflective factors in exercise and medication adherence.

    Science.gov (United States)

    Phillips, L Alison; Cohen, Joshua; Burns, Edith; Abrams, Jessica; Renninger, Steffi

    2016-12-01

    Non-adherence to health behaviors required for chronic illness self-management is pervasive. Advancing health-behavior theory to include behavioral initiation and maintenance factors, including reflective (e.g., belief- and feedback-based) and automatic (e.g., habit-based) mechanisms of adherence to different treatment-related behaviors could improve non-adherence prediction and intervention efforts. To test behavioral initiation and maintenance factors from an extended common sense self-regulation theoretical framework for predicting medication adherence and physical activity among patients with Type 2 diabetes. Patients (n = 133) in an in-person (n = 80) or online (n = 53) version of the study reported treatment-related (1) barriers, (2) beliefs and experiential feedback (reflective mechanisms of treatment-initiation and short-term repetition), and (3) habit strength (automatic mechanism of treatment-maintenance) for taking medication and engaging in regular physical activity at baseline. Behaviors were assessed via self-reports (n = 133) and objectively (electronic monitoring pill bottles, accelerometers; n = 80) in the subsequent month. Treatment-specific barriers and habit strength predicted self-reported and objective adherence for both behaviors. Beliefs were inconsistently related to behavior, even when habits were "weak". Experiential feedback from behavior was not related to adherence. Among patients with Type 2 diabetes diagnosis, medication and physical activity adherence were better predicted by their degree of automatic behavioral repetition than their beliefs/experiences with the treatment-actions. Habit strength should be an intervention target for chronic illness self-management; assessing it in practice settings may effectively detect non-adherence to existing treatment-regimens. However, future research and further refining of CS-SRM theory regarding the processes required for such habit development are needed.

  19. Social Networks, the ‘Work’ and Work Force of Chronic Illness Self-Management: A Survey Analysis of Personal Communities

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    Vassilev, Ivaylo; Rogers, Anne; Blickem, Christian; Brooks, Helen; Kapadia, Dharmi; Kennedy, Anne; Sanders, Caroline; Kirk, Sue; Reeves, David

    2013-01-01

    Self-management support forms a central aspect of chronic Illness management nationally and globally. Evidence for the success of self-management support has mainly focussed on individually-centred outcomes of behavioural change. While it is recognised that social network members play an important role there is currently a gap in knowledge regarding who provides what type of support and under what circumstances. This is relevant for understanding the division of labour and the meeting of needs for those living with a long-term condition. We therefore took a network approach to explore self-management support conceptualising it as types of illness ‘work’ undertaken within peoples’ social networks. 300 people from deprived areas and with chronic illnesses took part in a survey conducted in 2010 in the North West of England. A concentric circles diagram was used as a research tool with which participants identified 2,544 network members who contributed to illness management. The results provide an articulation of how social network members are substantially involved in illness management. Whilst partners and close family make the highest contributions there is evidence of inputs from a wide range of relationships. Network member characteristics (type of relationship, proximity, frequency of contact) impact on the amount of illness work undertaken in peoples’ networks. In networks with ‘no partner’ other people tend to contribute more in the way of illness related work than in networks with a partner. This indicates a degree of substitutability between differently constituted networks, and that the level and type of input by different members of a network might change according to circumstances. A network perspective offers an opportunity to redress the balance of an exclusively individual focus on self-management because it addresses the broader set of contributions and resources available to people in need of chronic illness management and support. PMID

  20. A scoping review of the literature on benefits and challenges of participating in patient education programs aimed at promoting self-management for people living with chronic illness.

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    Stenberg, Una; Haaland-Øverby, Mette; Fredriksen, Kari; Westermann, Karl Fredrik; Kvisvik, Toril

    2016-11-01

    To give a comprehensive overview of benefits and challenges from participating in group based patient education programs that are carried out by health care professionals and lay participants, aimed at promoting self-management for people living with chronic illness. We searched 8 literature databases. Full text articles meeting the inclusion criteria were retrieved and reviewed. Arksey and O'Malley's framework for scoping studies guided the review process and thematic analysis was undertaken to synthesize extracted data. Of the 5935 titles identified, 47 articles were included in this review. The participants experienced the programs as beneficial according to less symptom distress and greater awareness of their own health, improved self-management strategies, peer support, learning and hope. A substantial evidence base supports the conclusion that group based self-management patient education programs in different ways have been experienced as beneficial, but more research is needed. The insights gained from this review can enable researchers, health care professionals, and participants to understand the complexity in evaluating self-management patient education programs, and constitute a basis for a more standardized and systematic evaluation. The results may also encourage health care professionals in planning and carrying out programs in cooperation with lay participants. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

  1. 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

  2. Psychometric properties of the Iranian version of resources and support for chronic illness self-management scale in patients with type 2 diabetes

    Directory of Open Access Journals (Sweden)

    Elham Shakibazadeh

    2012-01-01

    Full Text Available Background: This article is a report of psychometric testing of the Farsi version of Resources and Support for Chronic Illness Self-management (RSSM scale. Methods: In this cross-sectional study, a convenience sample of 160 patients with type 2 diabetes, registered with the Charity Foundation for Special Diseases′ team-focused diabetes clinic, were recruited (response rate=83.7%; n=134. Participants older than 18 years who had active medical files in the system completed the questionnaire. Content validity was established using translation and back-translation procedures, pilot testing of the instrument, and getting views of the expert panel. Construct validity was determined using explanatory factor analysis. Internal consistency was ascertained using Cronbach′s alpha. The stability was confirmed using intra-class correlation coefficients. Results: Using exploratory factor analysis, a five-factor model emerged, which explained 75.24% of the total variance. Internal consistency reliability was sufficient (α=0.70; range=0.66 - 0.87. The intra-class correlation coefficient was 0.74 - 0.81 for individual items. Conclusion: The RSSM-Farsi seems to be a valid and reliable instrument to measure outcomes of diabetes self-management education programs in Farsi. The RSSM-Farsi version scale could be a useful, comprehensive, and culturally sensitive scale for assessing resources and support for self-management between type 2 diabetic patients.

  3. Targeting “hardly reached” people with chronic illness: a feasibility study of a person-centered self-management education approach

    Directory of Open Access Journals (Sweden)

    Varming AR

    2018-02-01

    Full Text Available Annemarie Reinhardt Varming,1 Rikke Torenholt,1 Tue Helms Andersen,2 Birgitte Lund Møller,3 Ingrid Willaing1 1Diabetes Management Research, Health Promotion, Steno Diabetes Center Copenhagen, The Capital Region of Denmark, 2Danish Diabetes Association, 3Department of Intersectoral Collaboration, Region of Southern Denmark, Denmark Background: Self-management education is critical to the development of successful health behavior changes related to chronic illness. However, people in high-risk groups attend less frequently or benefit less from patient education programs than do people with more socioeconomic advantages.Aim: The aim was to test the feasibility of a participatory person-centered education approach and tool-kit targeting self-management of chronic illness in hardly reached people.Methods: After participating in a training program, educators (n=77 tested the approach in practice. Data collection included online questionnaires for educators (n=65, observations of education sessions (n=7, and interviews with educators (n=11 and participants (n=22. Descriptive statistics were calculated. Transcripts of interviews and observations were analyzed using systematic text condensation. Feasibility was examined in terms of practicality, integration, suitability, and efficacy.Results: Educators had a positive response to the approach and found that the tools supported involving participants in education and support. Participant satisfaction varied, depending on the ability of educators to integrate the tools into programs in a meaningful way. The tools provided time for reflection in the education process that benefited participants and educators alike. Educators found it challenging to allow participants to help set the agenda and to exchange experiences without educator control. Barriers to use reported by educators included lack of time for both training and preparation.Limitations: The testing included varied groups of participants, some

  4. Chronic condition self-management: expectations of responsibility.

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    Lawn, Sharon; McMillan, John; Pulvirenti, Mariastella

    2011-08-01

    While self-management may be beneficial for many patients it assumes and encourages a particular conception of responsibility and self-management that may not fit with all patients' experience of their chronic conditions and their management. It therefore warrants further examination. We examine the concept of self-management and responsibility from a range of standpoints, focusing on the Australian context. Attempts to meet people's needs run the risk of imposing specific conceptions of how people should live their lives. While self-management appears to be consistent with placing patients' needs, values and priorities at the heart of healthcare, ill-defined assumptions about responsibility may confound these goals. Reflection on social determinants of health, the context in which patients seek self-management support from health services, and how their needs and preferences are listened to by health professionals, is critical for the collaborative self-management partnership between them to be effectively realized. Providing services without reflecting on the meaning of self-management for the person with chronic conditions creates unintended assumptions about responsibility, engagement and care provision which may serve to alienate and further stigmatise some patients. Often, these are the very patients with complex needs who need such service support the most. Crown Copyright © 2010. Published by Elsevier Ireland Ltd. All rights reserved.

  5. 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

  6. 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

  7. 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

  8. Alexithymia, Illness Perception and Self-management Competency in Psoriasis

    Directory of Open Access Journals (Sweden)

    Marie H. Larsen

    2017-06-01

    Full Text Available Alexithymia, defined as difficulty in describing or recognizing emotions, has been shown to be connected with psoriasis, but its relationship with self-management of psoriasis has not been explored. The aim of this study was to assess the frequency of alexithymia and its relationship with self-management and illness perception in the context of psoriasis. A total of 163 patients participating in 3 weeks of climate heliotherapy (CHT at Gran Canaria were assessed for alexithymia using the Toronto Alexithymia Scale (TAS-20 at baseline. Self-reported measures for self-management (Health Education Impact Questionnaire; heiQ, and disease severity and illness perception (Brief Illness Perception Questionnaire; BIPQ were assessed twice. Of all patients, 14.1% were characterized as alexithymic and 22.1% scored in the intermediate range. Alexithymic patients scored significantly worse in all heiQ domains, and reported worse illness perception. However, there were no between-group differences in heiQ or BIPQ change from baseline to after CHT. In conclusion, this study shows that alexithymia indicates inferior self-management and reaffirms the associations with illness perception. Further research is required into these relationships.

  9. The emotional context of self-management in chronic illness: A qualitative study of the role of health professional support in the self-management of type 2 diabetes

    Directory of Open Access Journals (Sweden)

    Dunbar James

    2008-10-01

    Full Text Available Abstract Background Support for patient self-management is an accepted role for health professionals. Little evidence exists on the appropriate basis for the role of health professionals in achieving optimum self-management outcomes. This study explores the perceptions of people with type 2 diabetes about their self-management strategies and how relationships with health professionals may support this. Methods Four focus groups were conducted with people with type 2 diabetes: two with English-speaking and one each with Turkish and Arabic-speaking. Transcripts from the groups were analysed drawing on grounded hermeneutics and interpretive description. Results We describe three conceptually linked categories of text from the focus groups based on emotional context of self management, dominant approaches to self management and support from health professionals for self management. All groups described important emotional contexts to living with and self-managing diabetes and these linked closely with how they approached their diabetes management and what they looked for from health professionals. Culture seemed an important influence in shaping these linkages. Conclusion Our findings suggest people construct their own individual self-management and self-care program, springing from an important emotional base. This is shaped in part by culture and in turn determines the aims each person has in pursuing self-management strategies and the role they make available to health professionals to support them. While health professionals' support for self-care strategies will be more congruent with patients' expectations if they explore each person's social, emotional and cultural circumstances, pursuit of improved health outcomes may involve a careful balance between supporting as well as helping shift the emotional constructs surrounding a patient life with diabetes.

  10. Chronic illness, self-management and technology: type 1 diabetes patients’ views of the use of technology to communicate with health professionals about their disease

    Directory of Open Access Journals (Sweden)

    Fernando B

    2012-11-01

    Full Text Available Annmarie Ruston,1 Alison Smith,1 Bernard Fernando21Centre for Health and Social Care Research, Faculty of Health and Social Care, Canterbury Christ Church University, Chatham Maritime, United Kingdom; 2Thames Avenue Surgery, Rainham, United KingdomPurpose: Diabetes represents one of the greatest health challenges facing the UK. Telehealth is seen to have the potential to revolutionize health care provision by improving access for patients with chronic disease, reducing health care costs, and improving efficiency. There have been many trials of telehealth in the UK but these have typically failed to become part of routine health care, particularly for diabetics. Program design and implementation has not been grounded in an understanding about the ways in which patients manage their disease and perceive these new technologies. This study addresses this gap by gaining an understanding of the perceptions of patients with type 1 diabetes about how telehealth could be used as part of their health care.Patients and methods: Thirty-two people with type 1 diabetes were recruited from a database of insulin pump users, and in-depth telephone interviews were undertaken, tape recorded, and transcribed. Analysis was conducted using a constant comparative approach.Results: Although respondents used technology as part of their diabetes self-management, they considered that the use of telehealth, as part of their health care, was potentially of limited value. Three themes emerged from their discourses: (1 a need to be in control of their disease themselves and a lack of trust of health care professionals in this process; (2 the belief that the National Health Service routine IT systems were unable to support telehealth; and (3 the belief that face-to-face communication was vital in providing them with high-quality care.Conclusion: Telehealth is considered to be revolutionizing health care and shifting power between patients and health professionals; however

  11. Computer Intervention: Illness Self-Management/Quality of Life of Rural Women.

    Science.gov (United States)

    Weinert, Clarann; Cudney, Shirley; Comstock, Bryan; Bansal, Aasthaa

    2014-03-01

    The Women To Women project, a computer-based support and educational research intervention, was designed to help rural women better understand and manage their chronic illnesses. Its impact on psychosocial adaptation has been reported elsewhere. This article reports on the effect of a computer intervention on chronic illness self-management skills and quality of life. Using a parallel 2-group study design, the researchers randomized 309 middle-aged rural women with chronic conditions to either a computer-based intervention or a control group. They collected data on self-management of chronic illness and quality of life indicators at baseline and at the end of the intervention. Women in the intervention group reported significantly more self-efficacy in managing their chronic disease than those in the control group and the observed effect was of moderate size. Women in the intervention group also reported statistically significant gains in quality of life; effect sizes were small but consistent. Select chronic illness self-management skills and quality of life can be positively influenced by a well-designed computer intervention. Copyright© by Ingram School of Nursing, McGill University.

  12. National Study of Chronic Disease Self-Management: Age Comparison of Outcome Findings

    Science.gov (United States)

    Ory, Marcia G.; Smith, Matthew Lee; Ahn, SangNam; Jiang, Luohua; Lorig, Kate; Whitelaw, Nancy

    2014-01-01

    Introduction: The adult population is increasingly experiencing one or more chronic illnesses and living with such conditions longer. The Chronic Disease Self-Management Program (CDSMP) helps participants cope with chronic disease-related symptomatology and improve their health-related quality of life. Nevertheless, the long-term effectiveness of…

  13. Attrition in Chronic Disease Self-Management Programs and Self-Efficacy at Enrollment

    Science.gov (United States)

    Verevkina, Nina; Shi, Yunfeng; Fuentes-Caceres, Veronica Alejandra; Scanlon, Dennis Patrick

    2014-01-01

    Among other goals, the Chronic Disease Self-Management Program (CDSMP) is designed to improve self-efficacy of the chronically ill. However, a substantial proportion of the enrollees often leave CDSMPs before completing the program curriculum. This study examines factors associated with program attrition in a CDSMP implemented in a community…

  14. Supporting Self-management of Chronic Pain

    Science.gov (United States)

    2018-04-04

    Chronic Pain Syndrome; Chronic Pain; Chronic Pain Due to Injury; Chronic Pain Due to Trauma; Chronic Pain Due to Malignancy (Finding); Chronic Pain Post-Procedural; Chronic Pain Hip; Chronic Pain, Widespread

  15. Living well: an intervention to improve self-management of medical illness for individuals with serious mental illness.

    Science.gov (United States)

    Goldberg, Richard W; Dickerson, Faith; Lucksted, Alicia; Brown, Clayton H; Weber, Elyssa; Tenhula, Wendy N; Kreyenbuhl, Julie; Dixon, Lisa B

    2013-01-01

    Individuals with serious mental illness have elevated rates of comorbid chronic general medical conditions and may benefit from interventions designed to support illness self-management. This study examined the effectiveness of a modified version of the Chronic Disease Self-Management Program called Living Well for individuals with serious mental illness. A total of 63 mental health consumers with serious mental illness and at least one concurrent chronic general medical condition were randomly assigned to receive the 13-session peer-cofacilitated Living Well intervention or usual care. Participants were evaluated on attitudinal, behavioral, and functional outcomes at baseline, at the end of the intervention, and at a two-month follow-up. Living Well participants showed significant postintervention improvements across a range of attitudinal (self-efficacy and patient activation), behavioral (illness self-management techniques), and functional (physical and emotional well-being and general health functioning) outcomes. Although attenuation of effect was observed for most outcomes at two months postintervention, evidence was found of continued improvement in general self-management behaviors (use of action planning, brainstorming, and problem-solving). Continued advantage was found for the Living Well group in other areas, such as health-related locus of control and reports of healthy eating and physical activity. Receipt of Living Well was associated with a notable decrease in use of the emergency room for medical care, although the between-group difference was not statistically significant. Living Well shows promise in helping mental health consumers more effectively manage chronic general medical conditions and experience improved functioning and well-being.

  16. Self-management education and support in chronic disease management.

    Science.gov (United States)

    McGowan, Patrick T

    2012-06-01

    With the changing health care environment, prevalence of chronic health conditions, and burgeoning challenges of health literacy, obesity, and homelessness, self-management support provides an opportunity for clinicians to enhance effectiveness and, at the same time, to engage patients to participate in managing their own personal care. This article reviews the differences between patient education and self-management and describes easy-to-use strategies that foster patient self-management and can be used by health care providers in the medical setting. It also highlights the importance of linking patients to nonmedical programs and services in the community. Copyright © 2012 Elsevier Inc. All rights reserved.

  17. Promoting and supporting self-management for adults living in the community with physical chronic illness: A systematic review of the effectiveness and meaningfulness of the patient-practitioner encounter.

    Science.gov (United States)

    Rees, Sally; Williams, Anne

    There has been a reported rise in the number of people with chronic illness (also referred to as long-term disease) in the Western world. One hundred million people in the United States have at least one chronic condition and in the United Kingdom (UK) as many as 17.5 million adults may be living with chronic disease. New models of care have been developed which recognise the complexities of managing care where there is overlap between the wider community, the health care system and provider organisations, for example, the Chronic Care Model and the Expert Patient Programme. These new models herald a shift away from the idea of chronically ill patients as passive recipients of care towards active engagement, in partnership with health professionals, in managing their own care.Partnership, ideally, involves collaborative care and self-management education. This may support self-care alongside medical, preventative and health maintenance interventions. In this context the nature of the patient-practitioner consultation in promoting self-care takes on a new importance. The overall objective of the review was to determine the best available evidence regarding the promotion and support of self-care management for adults living in the community with chronic illness during the patient-practitioner encounter. Specifically the review sought to determine: What is the effectiveness of the patient-practitioner encounter in promoting and supporting self-care management of people with chronic illness? What are the individual and organisational factors which help or hinder recognition, promotion and support of chronic disease self-care management strategies? What are the similarities and differences between how 'effectiveness' is defined in this context by patients and different practitioners? The review focussed on self-caring adults aged nineteen years and older living in the community, with a physical chronic illness, and not currently being treated as an in-patient. For

  18. Operationalizing Surveillance of Chronic Disease Self-Management and Self-Management Support.

    Science.gov (United States)

    Brady, Teresa J; Sacks, Jeffrey J; Terrillion, Albert J; Colligan, Erin M

    2018-04-05

    Sixty percent of US adults have at least one chronic condition, and more than 40% have multiple conditions. Self-management (SM) by the individual, along with self-management support (SMS) by others, are nonpharmacological interventions with few side effects that are critical to optimal chronic disease control. Ruiz and colleagues laid the conceptual groundwork for surveillance of SM/SMS at 5 socio-ecological levels (individual, health system, community, policy, and media). We extend that work by proposing operationalized indicators at each socio-ecologic level and suggest that the indicators be embedded in existing surveillance systems at national, state, and local levels. Without a robust measurement system at the population level, we will not know how far we have to go or how far we have come in making SM and SMS a reality. The data can also be used to facilitate planning and service delivery strategies, monitor temporal changes, and stimulate SM/SMS-related research.

  19. Wellness and illness self-management skills in community corrections.

    Science.gov (United States)

    Kelly, Patricia J; Ramaswamy, Megha; Chen, Hsiang-Feng; Denny, Donald

    2015-02-01

    Community corrections provide a readjustment venue for re-entry between incarceration and home for inmates in the US corrections system. Our goal was to determine how self-management skills, an important predictor of re-entry success, varied by demographic and risk factors. In this cross-sectional study, we analyzed responses of 675 clients from 57 community corrections programs run by the regional division of the Federal Bureau of Prisons. A self-administered survey collected data on self-management skills, demographics, and risk factors; significant associations were applied in four regression models: the overall self-management score and three self-management subscales: coping skills, goals, and drug use. Over one-quarter (27.2%/146) of participants had a mental health history. White race, no mental health history and high school education were associated with better overall self-management scores; mental health history and drug use in the past year were associated with lower coping scores; female gender and high school education were associated with better self-management goals; female gender was associated with better self-management drug use scores. Self-management programs may need to be individualized for different groups of clients. Lower scores for those with less education suggest an area for targeted, nurse-led interventions.

  20. Development of a chronic care ostomy self-management program.

    Science.gov (United States)

    Grant, Marcia; McCorkle, Ruth; Hornbrook, Mark C; Wendel, Christopher S; Krouse, Robert

    2013-03-01

    Each year a percentage of the 1.2 million men and women in the United States with a new diagnosis of colorectal cancer join the 700,000 people who have an ostomy. Education targeting the long-term, chronic care of this population is lacking. This report describes the development of a Chronic Care Ostomy Self-Management Program, which was informed by (1) evidence on published quality-of-life changes for cancer patients with ostomies, (2) educational suggestions from patients with ostomies, and (3) examination of the usual care of new ostomates to illustrate areas for continued educational emphases and areas for needed education and support. Using these materials, the Chronic Care Ostomy Self-Management Program was developed by a team of multi-disciplinary researchers accompanied by experienced ostomy nurses. Testing of the program is in process. Pilot study participants reported high satisfaction with the program syllabus, ostomy nurse leaders, and ostomate peer buddies.

  1. Development of a Chronic Care Ostomy Self Management Program

    Science.gov (United States)

    Grant, Marcia; McCorkle, Ruth; Hornbrook, Mark C.; Wendel, Christopher S.; Krouse, Robert

    2012-01-01

    Each year a percentage of the 1.2 million men and women in the United States with a new diagnosis of colorectal cancer join the 700,000 people who have an ostomy. Education targeting the long term, chronic care of this population is lacking. This report describes the development of a Chronic Care Ostomy Self Management Program, which was informed by (1) evidence on published quality of life changes for cancer patients with ostomies, (2) educational suggestions from patients with ostomies, and (3) examination of the usual care of new ostomates to illustrate areas for continued educational emphases and areas for needed education and support. Using these materials, the Chronic Care Ostomy Self Management Program was developed by a team of multi-disciplinary researchers accompanied by experienced ostomy nurses. Testing of the program is in process. Pilot study participants reported high satisfaction with the program syllabus, ostomy nurse leaders, and ostomate peer buddies. PMID:23104143

  2. Chronic disease self-management support for persons with dementia, in a clinical setting

    Directory of Open Access Journals (Sweden)

    Ibrahim JE

    2017-01-01

    age-related chronic illness along with a decline in the availability of informal caregivers calls for innovative programs to support self-management at a primary care level. Keywords: chronic disease, dementia, self-management, cognitive domains

  3. Supporting self-management of chronic health conditions: common approaches.

    Science.gov (United States)

    Lawn, Sharon; Schoo, Adrian

    2010-08-01

    The aims of this paper are to provide a description of the principles of chronic condition self-management, common approaches to support currently used in Australian health services, and benefits and challenges associated with using these approaches. We examined literature in this field in Australia and drew also from our own practice experience of implementing these approaches and providing education and training to primary health care professionals and organizations in the field. Using common examples of programs, advantages and disadvantages of peer-led groups (Stanford Courses), care planning (The Flinders Program), a brief primary care approach (the 5As), motivational interviewing and health coaching are explored. There are a number of common approaches used to enhance self-management. No one approach is superior to other approaches; in fact, they are often complimentary. The nature and context for patients' contact with services, and patients' specific needs and preferences are what must be considered when deciding on the most appropriate support mode to effectively engage patients and promote self-management. Choice of approach will also be determined by organizational factors and service structures. Whatever self-management support approaches used, of importance is how health services work together to provide support. Copyright 2009 Elsevier Ireland Ltd. All rights reserved.

  4. Cost Analysis of Chronic Disease Self-Management Programmes Being Delivered in South Florida

    Science.gov (United States)

    Page, Timothy F.; Palmer, Richard C.

    2014-01-01

    Background: Chronic disease accounts for the majority of healthcare costs. The Chronic Disease Self-Management Programme (CDSMP) has been shown to be effective in reducing the burden of chronic disease. Objectives: The objective of this study was to measure the cost of delivering the Chronic Disease Self-Management Programme (CDSMP) in order to…

  5. Self-Management: Taking Charge of Your Health

    Science.gov (United States)

    ... method of taking control is called “self-management.” What is self-management of chronic illness? Self-management of chronic illness means that you take responsibility for doing what it takes to manage your illness effectively. It’s ...

  6. Systematic literature review on effectiveness of self-management support interventions in patients with chronic conditions and low socio-economic status

    DEFF Research Database (Denmark)

    Van Hecke, Ann; Heinen, Maud; Fernández-Ortega, Paz

    2017-01-01

    of patients with a low socio-economic status. No differences were found for interventions developed based on health behaviour theoretical models. CONCLUSION: Limited evidence was found for self-management support interventions in chronically ill patients with low socio-economic status. Essential......AIM: To assess the quality of evidence and determine the effect of patient-related and economic outcomes of self-management support interventions in chronically ill patients with a low socio-economic status. BACKGROUND: Integrated evidence on self-management support interventions in chronically ill...... people with low socio-economic status is lacking. DESIGN: Systematic literature review. DATA SOURCES: Cochrane database of trials, PubMed, CINAHL, Web of Science, PsycINFO and Joanna Briggs Institute Library were searched (2000-2013). Randomized controlled trials addressing self-management support...

  7. Impact of an occupation-based self-management programme on chronic disease management.

    LENUS (Irish Health Repository)

    O'Toole, Lynn

    2013-02-01

    There is a need for the development and evaluation of occupational therapy interventions enabling participation and contributing to self-management for individuals with multiple chronic conditions. This pilot study aimed to assess the feasibility and potential impact of an occupation-based self-management programme for community living individuals with multiple chronic conditions.

  8. The South Australia Health Chronic Disease Self-Management Internet Trial

    Science.gov (United States)

    Lorig, Kate; Ritter, Philip L.; Plant, Kathryn; Laurent, Diana D.; Kelly, Pauline; Rowe, Sally

    2013-01-01

    Objectives: To evaluate the effectiveness of an online chronic disease self-management program for South Australia residents. Method: Data were collected online at baseline, 6 months, and 12 months. The intervention was an asynchronous 6-week chronic disease self-management program offered online. The authors measured eight health status measures,…

  9. Behaviour change and social blinkers? The role of sociology in trials of self-management behaviour in chronic conditions.

    Science.gov (United States)

    Ong, Bie Nio; Rogers, Anne; Kennedy, Anne; Bower, Peter; Sanders, Tom; Morden, Andrew; Cheraghi-Sohi, Sudeh; Richardson, Jane C; Stevenson, Fiona

    2014-02-01

    Individual-focused self-management interventions are one response to both an ageing society and the purported increase in chronic conditions. They tend to draw on psychological theories in self-management interventions, but over-reliance on these theories can reinforce a narrow focus on specified attitudinal and behavioural processes, omitting aspects of living with a chronic condition. While advances have been made in health behaviour change theory and practice, scant attention has been paid to the social, with the question of social context remaining under-theorised and under-explored empirically. This is particularly noticeable in trials of behaviour change interventions for self-management. The common sociological critique is that these ignore context and thus no explanation can be given as to why, for whom and under what circumstances a treatment works. Conversely, sociologists are criticised for offering no positive suggestions as to how context can be taken into account and for over-emphasising context with the risk of inhibiting innovation. This article provides an overview of these issues and provides examples of how context can be incorporated into the rigid method of trials of self-management for chronic conditions. We discuss modifications to both trial interventions and design that make constructive use of the concept of context. © 2014 The Authors. Sociology of Health & Illness © 2014 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd.

  10. Treating asthma with a self-management model of illness behaviour in an Australian community pharmacy setting.

    Science.gov (United States)

    Smith, Lorraine; Bosnic-Anticevich, Sinthia Z; Mitchell, Bernadette; Saini, Bandana; Krass, Ines; Armour, Carol

    2007-04-01

    Asthma affects a considerable proportion of the population worldwide and presents a significant health problem in Australia. Given its chronic nature, effective asthma self-management approaches are important. However, despite research and interventions targeting its treatment, the management of asthma remains problematic. This study aimed to develop, from a theoretical basis, an asthma self-management model and implement it in an Australian community pharmacy setting in metropolitan Sydney, using a controlled, parallel-groups repeated-measures design. Trained pharmacists delivered a structured, step-wise, patient-focused asthma self-management program to adult participants over a 9-month period focusing on identification of asthma problems, goal setting and strategy development. Data on process- clinical- and psychosocial-outcome measures were gathered. Results showed that participants set an average of four new goals and six repeated goals over the course of the intervention. Most common goal-related themes included asthma triggers, asthma control and medications. An average of nine strategies per participant was developed to achieve the set goals. Common strategies involved visiting a medical practitioner for review of medications, improving adherence to medications and using medications before exercise. Clinical and psychosocial outcomes indicated significant improvements over time in asthma symptom control, asthma-related self-efficacy and quality of life, and negative affect. These results suggest that an asthma self-management model of illness behaviour has the potential to provide patients with a range of process skills for self-management, and deliver improvements in clinical and psychosocial indicators of asthma control. The results also indicate the capacity for the effective delivery of such an intervention by pharmacists in Australian community pharmacy settings.

  11. An environmental scan of policies in support of chronic disease self-management in Canada.

    Science.gov (United States)

    Liddy, C; Mill, K

    2014-02-01

    The evidence supporting chronic disease self-management warrants further attention. Our aim was to identify existing policies, strategies and frameworks that support self-management initiatives. This descriptive study was conducted as an environmental scan, consisting of an Internet search of government and other publicly available websites, and interviews with jurisdictional representatives identified through the Health Council of Canada and academic networking. We interviewed 16 representatives from all provinces and territories in Canada and found 30 publicly available and relevant provincial and national documents. Most provinces and territories have policies that incorporate aspects of chronic disease self-management. Alberta and British Columbia have the most detailed policies. Both feature primary care prominently and are not disease specific. Both also have provincial level implementation of chronic disease self-management programming. Canada's northern territories all lacked specific policies supporting chronic disease self-management despite a significant burden of disease. Engaging patients in self-management of their chronic diseases is important and effective. Although most provinces and territories have policies that incorporate aspects of chronic disease self-management, they were often embedded within other initiatives and/or policy documents framed around specific diseases or populations. This approach could limit the potential reach and effect of self-management.

  12. Peer-Led Self-Management of General Medical Conditions for Patients With Serious Mental Illnesses: A Randomized Trial.

    Science.gov (United States)

    Druss, Benjamin G; Singh, Manasvini; von Esenwein, Silke A; Glick, Gretl E; Tapscott, Stephanie; Tucker, Sherry Jenkins; Lally, Cathy A; Sterling, Evelina W

    2018-02-01

    Individuals with serious mental illnesses have high rates of general medical comorbidity and challenges in managing these conditions. A growing workforce of certified peer specialists is available to help these individuals more effectively manage their health and health care. However, few studies have examined the effectiveness of peer-led programs for self-management of general medical conditions for this population. This randomized study enrolled 400 participants with a serious mental illness and one or more chronic general medical conditions across three community mental health clinics. Participants were randomly assigned to the Health and Recovery Peer (HARP) program, a self-management program for general medical conditions led by certified peer specialists (N=198), or to usual care (N=202). Assessments were conducted at baseline and three and six months. At six months, participants in the intervention group demonstrated a significant differential improvement in the primary study outcome, health-related quality of life. Specifically, compared with the usual care group, intervention participants had greater improvement in the Short-Form Health Survey physical component summary (an increase of 2.7 versus 1.4 points, p=.046) and mental component summary (4.6 versus 2.5 points, p=.039). Significantly greater six-month improvements in mental health recovery were seen for the intervention group (p=.02), but no other between-group differences in secondary outcome measures were significant. The HARP program was associated with improved physical health- and mental health-related quality of life among individuals with serious mental illness and comorbid general medical conditions, suggesting the potential benefits of more widespread dissemination of peer-led disease self-management in this population.

  13. Self-management of chronic low back pain: Four viewpoints from patients and healthcare providers.

    Science.gov (United States)

    Stenner, Paul; Cross, Vinnette; McCrum, Carol; McGowan, Janet; Defever, Emmanuel; Lloyd, Phil; Poole, Robert; Moore, Ann P

    2015-07-01

    A move towards self-management is central to health strategy around chronic low back pain, but its concept and meaning for those involved are poorly understood. In the reported study, four distinct and shared viewpoints on self-management were identified among people with pain and healthcare providers using Q methodology. Each construes self-management in a distinctive manner and articulates a different vision of change. Identification of similarities and differences among the viewpoints holds potential for enhancing communication between patients and healthcare providers and for better understanding the complexities of self-management in practice.

  14. Self-management of chronic low back pain: Four viewpoints from patients and healthcare providers

    Directory of Open Access Journals (Sweden)

    Paul Stenner

    2015-11-01

    Full Text Available A move towards self-management is central to health strategy around chronic low back pain, but its concept and meaning for those involved are poorly understood. In the reported study, four distinct and shared viewpoints on self-management were identified among people with pain and healthcare providers using Q methodology. Each construes self-management in a distinctive manner and articulates a different vision of change. Identification of similarities and differences among the viewpoints holds potential for enhancing communication between patients and healthcare providers and for better understanding the complexities of self-management in practice.

  15. Measuring chronic condition self-management in an Australian community: factor structure of the revised Partners in Health (PIH) scale.

    Science.gov (United States)

    Smith, David; Harvey, Peter; Lawn, Sharon; Harris, Melanie; Battersby, Malcolm

    2017-01-01

    To evaluate the factor structure of the revised Partners in Health (PIH) scale for measuring chronic condition self-management in a representative sample from the Australian community. A series of consultations between clinical groups underpinned the revision of the PIH. The factors in the revised instrument were proposed to be: knowledge of illness and treatment, patient-health professional partnership, recognition and management of symptoms and coping with chronic illness. Participants (N = 904) reporting having a chronic illness completed the revised 12-item scale. Two a priori models, the 4-factor and bi-factor models were then evaluated using Bayesian confirmatory factor analysis (BCFA). Final model selection was established on model complexity, posterior predictive p values and deviance information criterion. Both 4-factor and bi-factor BCFA models with small informative priors for cross-loadings provided an acceptable fit with the data. The 4-factor model was shown to provide a better and more parsimonious fit with the observed data in terms of substantive theory. McDonald's omega coefficients indicated that the reliability of subscale raw scores was mostly in the acceptable range. The findings showed that the PIH scale is a relevant and structurally valid instrument for measuring chronic condition self-management in an Australian community. The PIH scale may help health professionals to introduce the concept of self-management to their patients and provide assessment of areas of self-management. A limitation is the narrow range of validated PIH measurement properties to date. Further research is needed to evaluate other important properties such as test-retest reliability, responsiveness over time and content validity.

  16. [The Utilization of Health-Related Applications in Chronic Disease Self-Management].

    Science.gov (United States)

    Kao, Chi-Wen; Chuang, Hui-Wan; Chen, Ting-Yu

    2017-08-01

    The dramatic increase in smartphone usage has spurred the development of many health-related mobile applications (apps). On the other hand, population aging and the associated rise in the incidence of chronic disease is increasing the demand for long-term care. Effective chronic disease self-management has been shown to help patients improve their health condition. Numerous smartphone applications currently support patient self-management of chronic disease, facilitating health management and health promotion. The purpose of the present article was to introduce the definition, contents, and types of health-related apps; to discuss the effectiveness of self-management health-related apps in promoting chronic disease management; and to assess and evaluate these apps. We hope that the present article helps give to healthcare professionals and patients who are willing to manage their diseases a general understanding of health-related apps and their potential to facilitate the self-management of chronic diseases.

  17. Toward consensus on self-management support: the international chronic condition self-management support framework.

    Science.gov (United States)

    Mills, Susan L; Brady, Teresa J; Jayanthan, Janaki; Ziabakhsh, Shabnam; Sargious, Peter M

    2017-12-01

    Self-management support (SMS) initiatives have been hampered by insufficient attention to underserved and disadvantaged populations, a lack of integration between health, personal and social domains, over emphasis on individual responsibility and insufficient attention to ethical issues. This paper describes a SMS framework that provides guidance in developing comprehensive and coordinated approaches to SMS that may address these gaps and provides direction for decision makers in developing and implementing SMS initiatives in key areas at local levels. The framework was developed by researchers, policy-makers, practitioners and consumers from 5 English-speaking countries and reviewed by 203 individuals in 16 countries using an e-survey process. While developments in SMS will inevitably reflect local and regional contexts and needs, the strategic framework provides an emerging consensus on how we need to move SMS conceptualization, planning and development forward. The framework provides definitions of self-management (SM) and SMS, a collective vision, eight guiding principles and seven strategic directions. The framework combines important and relevant SM issues into a strategic document that provides potential value to the SMS field by helping decision-makers plan SMS initiatives that reflect local and regional needs and by catalyzing and expanding our thinking about the SMS field in relation to system thinking; shared responsibility; health equity and ethical issues. The framework was developed with the understanding that our knowledge and experience of SMS is continually evolving and that it should be modified and adapted as more evidence is available, and approaches in SMS advance. © The Author 2016. Published by Oxford University Press. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

  18. An intelligent partner system for improving chronic illness care

    Directory of Open Access Journals (Sweden)

    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.

  19. Web 2.0 chronic disease self-management for older adults: a systematic review.

    Science.gov (United States)

    Stellefson, Michael; Chaney, Beth; Barry, Adam E; Chavarria, Enmanuel; Tennant, Bethany; Walsh-Childers, Kim; Sriram, P S; Zagora, Justin

    2013-02-14

    adherence, biological outcomes, or health care utilization. Mean SQS scores were notably low (mean=63%, SD 18%). Studies were judged to be weakest on the Maintenance dimension of RE-AIM; 13 reviewed studies (87%) did not describe any measures taken to sustain Web 2.0 effects past designated study time periods. Detailed process and impact evaluation frameworks were also missing in almost half (n=7) of the reviewed interventions. There is need for a greater understanding of the costs and benefits associated with using patient-centered Web 2.0 technologies for chronic disease self-management. More research is needed to determine whether the long-term effectiveness of these programs is sustainable among larger, more diverse samples of chronically ill patients. The effective translation of new knowledge, social technologies, and engagement techniques will likely result in novel approaches for empowering, engaging, and educating older adults with chronic disease.

  20. Growing up with a Chronic Condition : Challenges for Self-management and Self-management Support

    NARCIS (Netherlands)

    J.N.T. Sattoe (Jane)

    2015-01-01

    markdownabstract__Abstract__ Becoming an adult often proves extra challenging for those who grow up with chronic conditions, because adaptive tasks related to living with a chronic condition can clash with normal developmental milestones. Finding a good balance and integrating these tasks in

  1. Expectations and needs of patients with a chronic disease toward self-management and eHealth for self-management purposes

    NARCIS (Netherlands)

    Huygens, M.W.J.; Vermeulen, J.; Swinkels, I.C.S.; Friele, R.D.; Schayck, O.C.P. van; Witte, L.P. de

    2016-01-01

    Background: Self-management is considered as an essential component of chronic care by primary care professionals. eHealth is expected to play an important role in supporting patients in their self-management. For effective implementation of eHealth it is important to investigate patients’

  2. The role of the family in supporting the self-management of chronic conditions: A qualitative systematic review.

    Science.gov (United States)

    Whitehead, Lisa; Jacob, Elisabeth; Towell, Amanda; Abu-Qamar, Ma'en; Cole-Heath, Amanda

    2018-01-01

    To explore the contribution of family members in promoting and supporting the self-management of chronic conditions amongst adult family members. The prevalence of chronic disease continues to grow globally. The role of the family in chronic condition management and support for self-management has received little attention. A systematic review of qualitative literature using the Joanna Briggs Institute approach for qualitative systematic reviews. Ovid (MEDLINE, CINAHL and PsycINFO) were searched for the period of database inception-2016. The QARI (Qualitative Assessment and Review Instrument) critical appraisal instrument was used to assess the quality of each study. Using the Joanna Briggs Institute-QARI data extraction tool, findings related to the family role in the self-management of chronic conditions were extracted and each finding rated according to Joanna Briggs Institute-QARI levels of credibility. Findings were categorised and synthesised to produce a final set of aggregated findings. Families were key in constructing an environment that was conducive to family engagement and support. Adaptation within the family included maintaining cohesion between family members, normalisation and contextualisation of the chronic condition. Whilst evidence on the value of the family in promoting positive health outcomes is clear, research on how families can specifically support the self-management of chronic conditions is emerging. Family adaptability has been found to be the most powerful predictor of carer depression. Families may need support to change their home and family organisation to adapt to the challenges they face overtime. Change in roles and subsequent adaptation can be stressful, even for those family members at a distance. Nurses working in hospital and community settings can play an important role in assessing how families are adapting to living with chronic illness and to explore strategies to cope with challenges in the home setting. © 2017 John

  3. Patient perceptions about illness self-management in ANCA-associated small vessel vasculitis.

    Science.gov (United States)

    Thorpe, C T; DeVellis, R F; Blalock, S J; Hogan, S L; Lewis, M A; DeVellis, B M

    2008-06-01

    To characterize patient perceptions, related to eight self-management behaviours relevant for adults with ANCA-associated small vessel vasculitis (ANCA-SVV), and to determine if these perceptions were associated with performance of each behaviour. Adults with ANCA-SVV (n = 202) completed a self-administered questionnaire that assessed eight self-management behaviours (adherence to recommendations for medication, health service use, diet, exercise, infection avoidance and symptom monitoring; prompt reporting of symptoms and side effects; and adjusting activities in response to symptoms), perceptions about these behaviours, socio-demographics, clinical factors and social desirability bias. Descriptive statistics were generated to characterize patients' perceptions about difficulty of, importance of, and specific barriers to performing each behaviour. Regression analyses explored whether these variables were associated with performing each behaviour, controlling for potential confounders. With few exceptions, higher perceived importance and lower perceived difficulty of each behaviour were associated with more frequent performance of the behaviour. For each behaviour, several specific barriers were frequently endorsed by patients and a number of these were associated with lower levels of self-management. This study reveals that patient perceptions about the illness and its treatment influence ANCA-SVV self-management. Perceived barriers to medication, health services, diet and exercise adherence were similar to those in other illnesses. This study also provides insight into barriers experienced by patients in performing behaviours (infection avoidance, symptom monitoring, reporting symptoms and side-effects and adjusting activities) not often previously studied. How the identification of these barriers can help inform future interventions for ANCA-SVV patients is to be discussed.

  4. Designing and delivering facilitated storytelling interventions for chronic disease self-management: a scoping review.

    Science.gov (United States)

    Gucciardi, Enza; Jean-Pierre, Nicole; Karam, Grace; Sidani, Souraya

    2016-07-11

    Little is known about how to develop and deliver storytelling as an intervention to support those managing chronic illnesses. This scoping review aims to describe the core elements of storytelling interventions in order to help facilitate its implementation. A scoping review was conducted in seven databases for articles published up to May 2014 to identify interventions that describe in detail how storytelling was used to support people in disease self-management interventions. Ten articles met all inclusion criteria. Core elements consistently observed across the storytelling interventions were: reflection and interactive meaning-making of experiences; principles of informality and spontaneity; non-directional and non-hierarchical facilitation; development of group norms and conduct to create a community among participants; and both an individual and collective role for participants. Differences were also observed across interventions, such as: the conceptual frameworks that directed the design of the intervention; the type and training of facilitators; intervention duration; and how session topics were selected and stories delivered. Furthermore, evaluation of the intervention and outcome assessment varied greatly across studies. The use of storytelling can be a novel intervention to enhance chronic disease self-management. The core elements identified in the review inform the development of the intervention to be more patient-centred by guiding participants to take ownership of and lead the intervention, which differs significantly from traditional support groups. Storytelling has the potential to provide patients with a more active role in their health care by identifying their specific needs as well as gaps in knowledge and skills, while allowing them to form strong bonds with peers who share similar disease-related experiences. However, measures of impact differed across interventions given the variation in chronic conditions. Our findings can guide future

  5. Factors influencing self-management in chronic obstructive pulmonary disease: an integrative review.

    Science.gov (United States)

    Disler, R T; Gallagher, R D; Davidson, P M

    2012-02-01

    Chronic obstructive pulmonary disease is a common, chronic and burdensome condition requiring the individual to engage in a range of self-management strategies. The capacity to engage in self-management is dependent on a range of internal (e.g., personal) and external (e.g., health service) factors. This paper seeks to define self-management, identify the determinants which influence the individual's ability to cope and adjust to living with chronic obstructive pulmonary disease in the community, and identify implications for clinical practice and research. Integrative review. Medline, Embase, PubMed, CINAHL, Google Scholar. Integrative review using prospective research questions. Papers were included in the review if they were published in peer reviewed journals and written in English between 2000 and 2010. Articles were accepted for inclusion if they discussed the determinants that influenced self-management of chronic obstructive pulmonary disease in the community. Confirmation of results and discussion themes was validated by specialists in chronic obstructive pulmonary disease and complex care. Self-management is less well characterised in chronic obstructive pulmonary disease compared with other chronic conditions. Functional limitation and the need to balance disease management with everyday life are the two key elements that patients face in managing their condition. Provider characteristics, socioeconomic status and health literacy are sparsely discussed yet are known to influence chronic obstructive pulmonary disease self-management. Chronic obstructive pulmonary disease self-management must be a key focus internationally as the disease incidence increases. Collaborative care is required between patients and health providers in order facilitate patients in confident management of their condition. Copyright © 2011 Elsevier Ltd. All rights reserved.

  6. Motivation and Self-Management Behavior of the Individuals With Chronic Low Back Pain.

    Science.gov (United States)

    Jung, Mi Jung; Jeong, Younhee

    2016-01-01

    Self-management behavior is an important component for successful pain management in individuals with chronic low back pain. Motivation has been considered as an effective way to change behavior. Because there are other physical, social, and psychological factors affecting individuals with pain, it is necessary to identify the main effect of motivation on self-management behavior without the influence of those factors. The purpose of this study was to investigate the effect of motivation on self-management in controlling pain, depression, and social support. We used a nonexperimental, cross-sectional, descriptive design with mediation analysis and included 120 participants' data in the final analysis. We also used hierarchical multiple regression to test the effect of motivation, and multiple regression analysis and Sobel test were used to examine the mediating effect. Motivation itself accounted for 23.4% of the variance in self-management, F(1, 118) = 35.003, p motivation was also a significant factor for self-management. In the mediation analysis, motivation completely mediated the relationship between education and self-management, z = 2.292, p = .021. Motivation is an important part of self-management, and self-management education is not effective without motivation. The results of our study suggest that nurses incorporate motivation in nursing intervention, rather than only giving information.

  7. Is Europe putting theory into practice? A qualitative study of the level of self-management support in chronic care management approaches.

    Science.gov (United States)

    Elissen, Arianne; Nolte, Ellen; Knai, Cécile; Brunn, Matthias; Chevreul, Karine; Conklin, Annalijn; Durand-Zaleski, Isabelle; Erler, Antje; Flamm, Maria; Frølich, Anne; Fullerton, Birgit; Jacobsen, Ramune; Saz-Parkinson, Zuleika; Sarria-Santamera, Antonio; Sönnichsen, Andreas; Vrijhoef, Hubertus

    2013-03-26

    Self-management support is a key component of effective chronic care management, yet in practice appears to be the least implemented and most challenging. This study explores whether and how self-management support is integrated into chronic care approaches in 13 European countries. In addition, it investigates the level of and barriers to implementation of support strategies in health care practice. We conducted a review among the 13 participating countries, based on a common data template informed by the Chronic Care Model. Key informants presented a sample of representative chronic care approaches and related self-management support strategies. The cross-country review was complemented by a Dutch case study of health professionals' views on the implementation of self-management support in practice. Self-management support for chronically ill patients remains relatively underdeveloped in Europe. Similarities between countries exist mostly in involved providers (nurses) and settings (primary care). Differences prevail in mode and format of support, and materials used. Support activities focus primarily on patients' medical and behavioral management, and less on emotional management. According to Dutch providers, self-management support is not (yet) an integral part of daily practice; implementation is hampered by barriers related to, among others, funding, IT and medical culture. Although collaborative care for chronic conditions is becoming more important in European health systems, adequate self-management support for patients with chronic disease is far from accomplished in most countries. There is a need for better understanding of how we can encourage both patients and health care providers to engage in productive interactions in daily chronic care practice, which can improve health and social outcomes.

  8. Using intervention mapping (IM) to develop a self-management program for employees with a chronic disease in the Netherlands

    NARCIS (Netherlands)

    Josephine Engels; F. van Dijk; Yvonne Heerkens; J. van der Gulden; S. Detaille

    2010-01-01

    Employees with a chronic disease often encounter problems at work because of their chronic disease. The current paper describes the development of a self-management programme based on the Chronic Disease Self-Management programme (CDSMP) of Stanford University to help employees with a chronic

  9. Using intervention mapping (IM) to develop a self-management programme for employees with a chronic disease in the Netherlands

    NARCIS (Netherlands)

    Detaille, Sarah I.; van der Gulden, Joost W. J.; Engels, Josephine A.; Heerkens, Yvonne F.; van Dijk, Frank J. H.

    2010-01-01

    Employees with a chronic disease often encounter problems at work because of their chronic disease. The current paper describes the development of a self-management programme based on the Chronic Disease Self-Management programme (CDSMP) of Stanford University to help employees with a chronic

  10. A Survey of Self-Management and Intrusiveness of Illness in Native Americans with Diabetes Mellitus.

    Science.gov (United States)

    Chou, Ann F; Page, Evaren E; Norris, Ann I; Kim, Sue E; Thompson, David M; Roswell, Robert H

    2014-12-01

    Diabetes mellitus (DM) has emerged as an important focus of national public health efforts because of the rapid increase in the burden of this disease. In particular, DM disproportionately affects Native Americans. Adequate management of DM requires that patients participate as active partners in their own care and much of patient activation and empowerment can be attributed to their experience with DM and self-care. That is, the degree to which the patient feels the disease intrudes on his or her daily life would impact the motivation for self-care. We conducted a study in collaboration with 2 tribal nations in Oklahoma, collecting data on survey questions regarding intrusiveness of illness and self-management behaviors from a sample of 159 members of the Chickasaw and Choctaw Nations. Previously validated variables measuring intrusiveness of illness and self-care were included in the survey. Descriptive statistics and bivariate analyses illustrated the distribution of these variables and identified possible tribal and gender differences. Our findings showed that our sample adjusted well to DM and in general exhibited high compliance to self-care. However, our findings also revealed striking gender differences where female respondents were better adjusted to their disease, whereas male respondents reported higher adherence to self-management. Findings from our study, particularly those that describe tribal differences and gender disparities, can inform strategies for case management and patient interactions with providers and the health care system.

  11. Recommendations of Common Data Elements to Advance the Science of Self-Management of Chronic Conditions.

    Science.gov (United States)

    Moore, Shirley M; Schiffman, Rachel; Waldrop-Valverde, Drenna; Redeker, Nancy S; McCloskey, Donna Jo; Kim, Miyong T; Heitkemper, Margaret M; Guthrie, Barbara J; Dorsey, Susan G; Docherty, Sharron L; Barton, Debra; Bailey, Donald E; Austin, Joan K; Grady, Patricia

    2016-09-01

    Common data elements (CDEs) are increasingly being used by researchers to promote data sharing across studies. The purposes of this article are to (a) describe the theoretical, conceptual, and definition issues in the development of a set of CDEs for research addressing self-management of chronic conditions; (b) propose an initial set of CDEs and their measures to advance the science of self-management; and (c) recommend implications for future research and dissemination. Between July 2014 and December 2015 the directors of the National Institute of Nursing Research (NINR)-funded P20 and P30 centers of excellence and NINR staff met in a series of telephone calls and a face-to-face NINR-sponsored meeting to select a set of recommended CDEs to be used in self-management research. A list of potential CDEs was developed from examination of common constructs in current self-management frameworks, as well as identification of variables frequently used in studies conducted in the centers of excellence. The recommended CDEs include measures of three self-management processes: activation, self-regulation, and self-efficacy for managing chronic conditions, and one measure of a self-management outcome, global health. The self-management of chronic conditions, which encompasses a considerable number of processes, behaviors, and outcomes across a broad range of chronic conditions, presents several challenges in the identification of a parsimonious set of CDEs. This initial list of recommended CDEs for use in self-management research is provisional in that it is expected that over time it will be refined. Comment and recommended revisions are sought from the research and practice communities. The use of CDEs can facilitate generalizability of research findings across diverse population and interventions. © 2016 Sigma Theta Tau International.

  12. Mapping publication status and exploring hotspots in a research field: chronic disease self-management.

    Science.gov (United States)

    Lu, Yang; Li, Zheng; Arthur, David

    2014-08-01

    To provide insight into the characteristics of chronic disease self-management by mapping publication status and exploring hotspots. Chronic disease is becoming a major public health issue worldwide, highlighting the importance of self-management in this area. Despite the volume and variety of publications, little is known about how 'chronic disease self-management' has developed, since the first publication 40 years ago. Such is the number of publications in the area, that there is a need for a systematic bibliographic examination to enable clinicians and researchers to navigate this literature. A bibliometric analysis of publications was used. Publication status was achieved using BICOMB software, whereas hotspots were identified with Ucinet software. A search of PubMed was conducted for papers published between 1971-2012. By 2011, the number of publications reached 696, a fourfold increase from the previous 10 years, of which 75% came from the USA and UK. There were 1284 journals, which published chronic disease self-management research, involving various disciplines. The research hotspots highlighted various self-management strategies for the following: diabetes; cardiac vascular and pulmonary chronic disease; pain relief for neoplasms; and obesity. Psychological adjustment was a permeating theme in self-management processes as was using internet-based interventions. Self-management in chronic disease publication has been most evident in developed countries. The bibliographic mapping and identification of publication hotspots provides scholars and practitioners with key target journals, as well as a rigorous overview of the field for use in further research, evidence-based practice and health policy development. © 2014 John Wiley & Sons Ltd.

  13. Expectations and needs of patients with a chronic disease toward self-management and eHealth for self-management purposes.

    Science.gov (United States)

    Huygens, Martine W J; Vermeulen, Joan; Swinkels, Ilse C S; Friele, Roland D; van Schayck, Onno C P; de Witte, Luc P

    2016-07-08

    Self-management is considered as an essential component of chronic care by primary care professionals. eHealth is expected to play an important role in supporting patients in their self-management. For effective implementation of eHealth it is important to investigate patients' expectations and needs regarding self-management and eHealth. The objectives of this study are to investigate expectations and needs of people with a chronic condition regarding self-management and eHealth for self-management purposes, their willingness to use eHealth, and possible differences between patient groups regarding these topics. Five focus groups with people with diabetes (n = 14), COPD (n = 9), and a cardiovascular condition (n = 7) were conducted in this qualitative research. Separate focus groups were organized based on patients' chronic condition. The following themes were discussed: 1) the impact of the chronic disease on patients' daily life; 2) their opinions and needs regarding self-management; and 3) their expectations and needs regarding, and willingness to use, eHealth for self-management purposes. A conventional content analysis approach was used for coding. Patient groups seem to differ in expectations and needs regarding self-management and eHealth for self-management purposes. People with diabetes reported most needs and benefits regarding self-management and were most willing to use eHealth, followed by the COPD group. People with a cardiovascular condition mentioned having fewer needs for self-management support, because their disease had little impact on their life. In all patient groups it was reported that the patient, not the care professional, should choose whether or not to use eHealth. Moreover, participants reported that eHealth should not replace, but complement personal care. Many participants reported expecting feelings of anxiety by doing measurement themselves and uncertainty about follow-up of deviant data of measurements. In addition

  14. "In this together": Social identification predicts health outcomes (via self-efficacy) in a chronic disease self-management program.

    Science.gov (United States)

    Cameron, James E; Voth, Jennifer; Jaglal, Susan B; Guilcher, Sara J T; Hawker, Gillian; Salbach, Nancy M

    2018-03-05

    Self-management programs are an established approach to helping people cope with the challenges of chronic disease, but the psychological mechanisms underlying their effectiveness are not fully understood. A key assumption of self-management interventions is that enhancing people's self-efficacy (e.g., via the development of relevant skills and behaviours) encourages adaptive health-related behaviors and improved health outcomes. However, the group-based nature of the programs allows for the possibility that identification with other program members is itself a social psychological platform for positive changes in illness-related confidence (i.e., group-derived efficacy) and physical and mental health. The researchers evaluated this hypothesis in a telehealth version of a chronic disease self-management program delivered in 13 rural and remote communities in northern Ontario, Canada (September 2007 to June 2008). Participants were 213 individuals with a self-reported physician diagnosis of chronic lung disease, heart disease, stroke, or arthritis. Measures of social identification, group-derived efficacy, and individual efficacy were administered seven weeks after baseline, and mental and physical health outcomes (health distress, psychological well-being, depression, vitality, pain, role limits, and disability) were assessed at four months. Structural equation modeling indicated that social identification was a positive predictor of group-derived efficacy and (in turn) individual self-efficacy (controlling for baseline), which was significantly associated with better physical and mental health outcomes. The results are consistent with growing evidence of the value of a social identity-based approach in various health and clinical settings. The success of chronic disease self-management programs could be enhanced by attending to and augmenting group identification during and after the program. Copyright © 2018 Elsevier Ltd. All rights reserved.

  15. Self-management interventions for chronic disease: a systematic scoping review.

    Science.gov (United States)

    Richardson, Julie; Loyola-Sanchez, Adalberto; Sinclair, Susanne; Harris, Jocelyn; Letts, Lori; MacIntyre, Norma J; Wilkins, Seanne; Burgos-Martinez, Gabriela; Wishart, Laurie; McBay, Cathy; Martin Ginis, Kathleen

    2014-11-01

    To investigate the contributions of physiotherapy and occupational therapy to self-management interventions and the theoretical models used to support these interventions in chronic disease. We conducted two literature searches to identify studies that evaluated self-management interventions involving physiotherapists and occupational therapists in MEDLINE, the Cochrane Library, CINAHL, EMBASE, AMED (Allied and Complementary Medicine), SPORTdiscus, and REHABDATA databases. Four investigator pairs screened article title and abstract, then full text with inclusion criteria. Selected articles (n = 57) included adults who received a chronic disease self-management intervention, developed or delivered by a physiotherapist and/or an occupational therapist compared with a control group. Four pairs of investigators performed independent reviews of each article and data extraction included: (a) participant characteristics, (b) the self-management intervention, (c) the comparison intervention, (d) outcome measures, construct measured and results. A total of 47 articles reported the involvement of physiotherapy in self-management compared with 10 occupational therapy articles. The type of chronic condition produced different yields: arthritis n = 21 articles; chronic obstructive pulmonary disease and chronic pain n = 9 articles each. The theoretical frameworks most frequently cited were social cognitive theory and self-efficacy theory. Physical activity was the predominant focus of the self-management interventions. Physiotherapy programmes included disease-specific education, fatigue, posture, and pain management, while occupational therapists concentrated on joint protection, fatigue, and stress management. Physiotherapists and occupational therapists make moderate contributions to self-management interventions. Most of these interventions are disease-specific and are most frequently based on the principles of behaviour change theories. © The Author(s) 2014.

  16. Attrition in Chronic Disease Self-Management Programs and self-efficacy at enrollment.

    Science.gov (United States)

    Verevkina, Nina; Shi, Yunfeng; Fuentes-Caceres, Veronica Alejandra; Scanlon, Dennis Patrick

    2014-12-01

    Among other goals, the Chronic Disease Self-Management Program (CDSMP) is designed to improve self-efficacy of the chronically ill. However, a substantial proportion of the enrollees often leave CDSMPs before completing the program curriculum. This study examines factors associated with program attrition in a CDSMP implemented in a community setting. We used data from the Our Pathways to Health program, implemented in Humboldt County, California, from 2008 to 2011. Our conceptual framework is based on Bandura's self-efficacy theory, and we used logistic regression to investigate whether baseline self-efficacy and other members' efficacy are associated with participants dropping out of the CDSMP. Twenty-three percent of the participants did not complete the program similar to previous studies. Lower baseline self-efficacy increased the odds of dropout, but other members' efficacy was not associated with differential odds of dropout. Age, educational difference between the individual and the group, weekday sessions, and social/role activity limitations are also found to be associated with program attrition. Our results suggest that participants with low starting self-efficacy may need extra help to complete the program. Further research is needed to understand how to effectively provide additional support to this group. © 2014 Society for Public Health Education.

  17. Self-Management Skills in Chronic Disease Management: What Role Does Health Literacy Have?

    Science.gov (United States)

    Mackey, Laura M; Doody, Catherine; Werner, Erik L; Fullen, Brona

    2016-08-01

    Self-management-based interventions can lead to improved health outcomes in people with chronic diseases, and multiple patient characteristics are associated with the development of self-management behaviors. Low health literacy (HL) has been implicated in poorer self-management behaviors and increased costs to health services. However, the mechanisms behind this relationship remain unclear. Therefore, the aim of the current review is to assess the association between HL and patient characteristics related to self-management behaviors (i.e., disease-related knowledge, beliefs, and self-efficacy). The review comprised 3 phases: 1) database searches, 2) eligibility screening, and 3) study quality assessment and strength of evidence. Inclusion criteria specified that a valid HL screening tool was used, that at least one self-management behavior was assessed, and that patients had a chronic condition. An initial search generated a total of 712 articles, of which 31 studies fulfilled the eligibility criteria. A consistent association was found between low HL and poorer disease-related knowledge in respiratory diseases, diabetes, and multiple disease categories. A significant association between low HL and poorer self-efficacy was reported in cardiovascular diseases, diabetes, human immunodeficiency virus, and multiple disease categories. HL was significantly associated with poorer beliefs in respiratory, musculoskeletal, and cardiovascular diseases. The findings from the current review suggest that low HL may affect behaviors necessary for the development of self-management skills. Given that self-management strategies are core components for effective treatment of a range of chronic diseases, low HL poses a considerable health concern. Further research is needed to understand the mediating influence of HL on disease-related knowledge, self-efficacy, and beliefs. From this, HL-sensitive, self-management interventions ought to be devised and implemented. © The Author

  18. Patient and Disease Characteristics Associated with Activation for Self-Management in Patients with Diabetes, Chronic Obstructive Pulmonary Disease, Chronic Heart Failure and Chronic Renal Disease: A Cross-Sectional Survey Study

    Science.gov (United States)

    Bos-Touwen, Irene; Schuurmans, Marieke; Monninkhof, Evelyn M.; Korpershoek, Yvonne; Spruit-Bentvelzen, Lotte; Ertugrul-van der Graaf, Inge; de Wit, Niek; Trappenburg, Jaap

    2015-01-01

    A substantial proportion of chronic disease patients do not respond to self-management interventions, which suggests that one size interventions do not fit all, demanding more tailored interventions. To compose more individualized strategies, we aim to increase our understanding of characteristics associated with patient activation for self-management and to evaluate whether these are disease-transcending. A cross-sectional survey study was conducted in primary and secondary care in patients with type-2 Diabetes Mellitus (DM-II), Chronic Obstructive Pulmonary Disease (COPD), Chronic Heart Failure (CHF) and Chronic Renal Disease (CRD). Using multiple linear regression analysis, we analyzed associations between self-management activation (13-item Patient Activation Measure; PAM-13) and a wide range of socio-demographic, clinical, and psychosocial determinants. Furthermore, we assessed whether the associations between the determinants and the PAM were disease-transcending by testing whether disease was an effect modifier. In addition, we identified determinants associated with low activation for self-management using logistic regression analysis. We included 1154 patients (53% response rate); 422 DM-II patients, 290 COPD patients, 223 HF patients and 219 CRD patients. Mean age was 69.6±10.9. Multiple linear regression analysis revealed 9 explanatory determinants of activation for self-management: age, BMI, educational level, financial distress, physical health status, depression, illness perception, social support and underlying disease, explaining a variance of 16.3%. All associations, except for social support, were disease transcending. This study explored factors associated with varying levels of activation for self-management. These results are a first step in supporting clinicians and researchers to identify subpopulations of chronic disease patients less likely to be engaged in self-management. Increased scientific efforts are needed to explain the greater

  19. Patient and disease characteristics associated with activation for self-management in patients with diabetes, chronic obstructive pulmonary disease, chronic heart failure and chronic renal disease: a cross-sectional survey study.

    Science.gov (United States)

    Bos-Touwen, Irene; Schuurmans, Marieke; Monninkhof, Evelyn M; Korpershoek, Yvonne; Spruit-Bentvelzen, Lotte; Ertugrul-van der Graaf, Inge; de Wit, Niek; Trappenburg, Jaap

    2015-01-01

    A substantial proportion of chronic disease patients do not respond to self-management interventions, which suggests that one size interventions do not fit all, demanding more tailored interventions. To compose more individualized strategies, we aim to increase our understanding of characteristics associated with patient activation for self-management and to evaluate whether these are disease-transcending. A cross-sectional survey study was conducted in primary and secondary care in patients with type-2 Diabetes Mellitus (DM-II), Chronic Obstructive Pulmonary Disease (COPD), Chronic Heart Failure (CHF) and Chronic Renal Disease (CRD). Using multiple linear regression analysis, we analyzed associations between self-management activation (13-item Patient Activation Measure; PAM-13) and a wide range of socio-demographic, clinical, and psychosocial determinants. Furthermore, we assessed whether the associations between the determinants and the PAM were disease-transcending by testing whether disease was an effect modifier. In addition, we identified determinants associated with low activation for self-management using logistic regression analysis. We included 1154 patients (53% response rate); 422 DM-II patients, 290 COPD patients, 223 HF patients and 219 CRD patients. Mean age was 69.6±10.9. Multiple linear regression analysis revealed 9 explanatory determinants of activation for self-management: age, BMI, educational level, financial distress, physical health status, depression, illness perception, social support and underlying disease, explaining a variance of 16.3%. All associations, except for social support, were disease transcending. This study explored factors associated with varying levels of activation for self-management. These results are a first step in supporting clinicians and researchers to identify subpopulations of chronic disease patients less likely to be engaged in self-management. Increased scientific efforts are needed to explain the greater

  20. Patient and disease characteristics associated with activation for self-management in patients with diabetes, chronic obstructive pulmonary disease, chronic heart failure and chronic renal disease: a cross-sectional survey study.

    Directory of Open Access Journals (Sweden)

    Irene Bos-Touwen

    Full Text Available A substantial proportion of chronic disease patients do not respond to self-management interventions, which suggests that one size interventions do not fit all, demanding more tailored interventions. To compose more individualized strategies, we aim to increase our understanding of characteristics associated with patient activation for self-management and to evaluate whether these are disease-transcending. A cross-sectional survey study was conducted in primary and secondary care in patients with type-2 Diabetes Mellitus (DM-II, Chronic Obstructive Pulmonary Disease (COPD, Chronic Heart Failure (CHF and Chronic Renal Disease (CRD. Using multiple linear regression analysis, we analyzed associations between self-management activation (13-item Patient Activation Measure; PAM-13 and a wide range of socio-demographic, clinical, and psychosocial determinants. Furthermore, we assessed whether the associations between the determinants and the PAM were disease-transcending by testing whether disease was an effect modifier. In addition, we identified determinants associated with low activation for self-management using logistic regression analysis. We included 1154 patients (53% response rate; 422 DM-II patients, 290 COPD patients, 223 HF patients and 219 CRD patients. Mean age was 69.6±10.9. Multiple linear regression analysis revealed 9 explanatory determinants of activation for self-management: age, BMI, educational level, financial distress, physical health status, depression, illness perception, social support and underlying disease, explaining a variance of 16.3%. All associations, except for social support, were disease transcending. This study explored factors associated with varying levels of activation for self-management. These results are a first step in supporting clinicians and researchers to identify subpopulations of chronic disease patients less likely to be engaged in self-management. Increased scientific efforts are needed to explain

  1. Self-management strategies in chronic obstructive pulmonary disease: a first step toward personalized medicine.

    Science.gov (United States)

    Barrecheguren, Miriam; Bourbeau, Jean

    2018-03-01

    Self-management has gained increased relevance in the management of chronic obstructive pulmonary disease patients. The heterogeneity in self-management interventions has complicated the development of recommendations for clinical practice. In this review, we present the latest findings regarding conceptual definition, effectiveness of self-management interventions and self-management strategies in chronic obstructive pulmonary disease as a first step toward personalized medicine: what, how and to whom? Self-management interventions have shown benefits in improving health-related quality of life and reducing hospital admissions. Favorable outcomes can only be achieved if patients have an ultimate goal, that is their desired achievements in their life. In the continuum of care, the components of the self-management program will vary to adapt to the condition of the patient (disease severity, comorbidities) and to factors such as patient motivation, confidence (self-efficacy), access to health care, family and social support. A combination of education, case management and patient-centric action plan has shown the best chance of success. The individual patient's needs, own preferences and personal goals should inform the design of any intervention with a behavioral component. A continuous loop process has to be implemented to constantly assess what work and does not work, aiming at achieving the desired outcomes for a given patient.

  2. Self-management in chronic obstructive pulmonary disease. Time for a paradigm shift?

    Science.gov (United States)

    Nici, Linda; Bontly, Thomas D; Zuwallack, Richard; Gross, Nicholas

    2014-01-01

    Self-management in chronic obstructive pulmonary disease, centering on an action plan for the exacerbation and enhanced communication between the patient and health care providers, makes good clinical sense. However, five relatively large trials of self-management in chronic obstructive pulmonary disease have had inconsistent results: only two demonstrated reductions in health care utilization and one had to be discontinued prematurely because of increased mortality. Do these discordant findings require a paradigm shift in our concept of self-management? Probably not-but an analysis of the negative studies can give us valuable insights. There are data to support the idea that patients in the trial that showed increased mortality did not self-manage appropriately. Only 4.5% of these patients called in before starting treatment for their exacerbation, the time to initiation of antibiotics or steroids was unsatisfactorily long, and the intervention arm used minimally more prednisone and antibiotics than the control arm. The reasons for a higher mortality will likely never be known, but it is possible that these high-risk patients may have needed earlier assessment by a trained professional, or that self-management led to overconfidence and treatment delays. We clearly need more effective ways to implement self-management and better define which groups of patients stand to benefit (or be harmed) by this intervention. This will require an investment in well-thought-out clinical trials.

  3. Ecological Factors Predict Transition Readiness/Self-Management in Youth With Chronic Conditions.

    Science.gov (United States)

    Javalkar, Karina; Johnson, Meredith; Kshirsagar, Abhijit V; Ocegueda, Sofia; Detwiler, Randal K; Ferris, Maria

    2016-01-01

    Health care transition readiness or self-management among adolescents and young adults (AYA) with chronic conditions may be influenced by factors related to their surrounding environment. Study participants were AYA diagnosed with a chronic condition and evaluated at pediatric- and adult-focused subspecialty clinics at the University of North Carolina Hospital Systems. All participants were administered a provider-administered self-management/transition-readiness tool, the UNC TRxANSITION Scale. Geographic area and associated characteristics (ecological factors) were identified for each participant's ZIP code using the published U.S. Census data. The Level 1 model of the hierarchical linear regression used individual-level predictors of transition readiness/self-management. The Level 2 model incorporated the ecological factors. We enrolled 511 AYA with different chronic conditions aged 12-31 years with the following characteristics: mean age of 20± 4 years, 45% white, 42% black, and 54% female. Participants represented 214 ZIP codes in or around North Carolina, USA. The Level 1 model showed that age, gender, and race were significant predictors of transition readiness/self-management. On adding the ecological factors in the Level 2 model, race was no longer significant. Participants from a geographic area with a greater percentage of females (β = .114, p = .005) and a higher median income (β = .126, p = .002) had greater overall transition readiness. Ecological factors also predicted subdomains of transition readiness/self-management. In this cohort of adolescents and young adults with different chronic conditions, ecological disparities such as sex composition, median income, and language predict self-management/transition readiness. It is important to take ecological risk factors into consideration when preparing patients for health self-management or transition. Copyright © 2016 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All

  4. Effectiveness of a group-based self-management program for people with chronic fatigue syndrome: a randomized controlled trial.

    Science.gov (United States)

    Pinxsterhuis, Irma; Sandvik, Leiv; Strand, Elin Bolle; Bautz-Holter, Erik; Sveen, Unni

    2017-01-01

    To evaluate the effectiveness of a group-based self-management program for people with chronic fatigue syndrome. A randomized controlled trial. Four mid-sized towns in southern Norway and two suburbs of Oslo. A total of 137 adults with chronic fatigue syndrome. A self-management program including eight biweekly meetings of 2.5 hours duration. The control group received usual care. Primary outcome measure: Medical Outcomes Study-Short Form-36 physical functioning subscale. Fatigue severity scale, self-efficacy scale, physical and mental component summary of the Short Form-36, and the illness cognition questionnaire (acceptance subscale). Assessments were performed at baseline, and at six-month and one-year follow-ups. At the six-month follow-up, a significant difference between the two groups was found concerning fatigue severity ( p = 0.039) in favor of the control group, and concerning self-efficacy in favor of the intervention group ( p = 0.039). These significant differences were not sustained at the one-year follow-up. No significant differences were found between the groups concerning physical functioning, acceptance, and health status at any of the measure points. The drop-out rate was 13.9% and the median number of sessions attended was seven (out of eight). The evaluated self-management program did not have any sustained effect, as compared with receiving usual care.

  5. Illness beliefs and the sociocultural context of diabetes self-management in British South Asians: a mixed methods study.

    Science.gov (United States)

    Patel, Neesha R; Chew-Graham, Carolyn; Bundy, Christine; Kennedy, Anne; Blickem, Christian; Reeves, David

    2015-05-10

    British South Asians have a higher incidence of diabetes and poorer health outcomes compared to the general UK population. Beliefs about diabetes are known to play an important role in self-management, yet little is known about the sociocultural context in shaping beliefs. This study aimed to explore the influence of sociocultural context on illness beliefs and diabetes self-management in British South Asians. A mixed methods approach was used. 67 participants recruited using random and purposive sampling, completed a questionnaire measuring illness beliefs, fatalism, health outcomes and demographics; 37 participants completed a social network survey interview and semi-structured interviews. Results were analysed using SPSS and thematic analysis. Quantitative data found certain social network characteristics (emotional and illness work) were related to perceived concern, emotional distress and health outcomes (p work remained a significant predictor of perceived concern and emotional distress related to diabetes (p culturally appropriate interventions to modify beliefs and support self-management in this population.

  6. Effect Evaluation of a Self-Management Program for Dutch Workers with a Chronic Somatic Disease: A Randomized Controlled Trial

    NARCIS (Netherlands)

    Frank van Dijk; Josephine Engels; Sarah Detaille; Yvonne Heerkens; Joost van der Gulden

    2013-01-01

    Purpose: The objective of this study is to investigate the effect of a Self-Management Program for workers with a chronic disease. This program is based on the Chronic Disease Self-Management Program of Stanford University, modified for workers with a chronic somatic disease. Methods: In a

  7. Using intervention mapping (IM) to develop a self-management programme for employees with a chronic disease in the Netherlands

    NARCIS (Netherlands)

    Detaille, S.I.; van der Gulden, J.W.J.; Engels, J.A.; Heerkens, Y.F.; van Dijk, F.J.H.

    2010-01-01

    ABSTRACT: BACKGROUND: Employees with a chronic disease often encounter problems at work because of their chronic disease. The current paper describes the development of a self-management programme based on the Chronic Disease Self-Management Programme (CDSMP) of Stanford University to help employees

  8. Using intervention mapping (IM) to develop a self-management programme for employees with a chronic disease in the Netherlands.

    NARCIS (Netherlands)

    Detaille, S.I.; Gulden, J.W.J. van der; Engels, J.A.; Heerkens, Y.H.; Dijk, F.J. van

    2010-01-01

    BACKGROUND: Employees with a chronic disease often encounter problems at work because of their chronic disease. The current paper describes the development of a self-management programme based on the Chronic Disease Self-Management programme (CDSMP) of Stanford University to help employees with a

  9. Psychosocial assessment and self-management of chronic pain

    NARCIS (Netherlands)

    J.S. Voerman (Jessica)

    2015-01-01

    markdownabstractAbstract Chronic pain is prevalent in both children and adults and has major negative consequences for their daily life, e.g. reduced participation in activities and depressive and anxious feelings. Therefore, it is important to early signal and treat chronic pain. This thesis

  10. Mobile phone messaging for facilitating self-management of long-term illnesses.

    Science.gov (United States)

    de Jongh, Thyra; Gurol-Urganci, Ipek; Vodopivec-Jamsek, Vlasta; Car, Josip; Atun, Rifat

    2012-12-12

    Long-term illnesses affect a significant proportion of the population in developed and developing countries. Mobile phone messaging applications, such as Short Message Service (SMS) and Multimedia Message Service (MMS), may present convenient, cost-effective ways of supporting self-management and improving patients' self-efficacy skills through, for instance, medication reminders, therapy adjustments or supportive messages. To assess the effects of mobile phone messaging applications designed to facilitate self-management of long-term illnesses, in terms of impact on health outcomes and patients' capacity to self-manage their condition. Secondary objectives include assessment of: user evaluation of the intervention; health service utilisation and costs; and possible risks and harms associated with the intervention. We searched the Cochrane Central Register of Controlled Trials (CENTRAL,The Cochrane Library 2009, Issue 2), MEDLINE (OvidSP) (January 1993 to June 2009), EMBASE (OvidSP) (January 1993 to June 2009), PsycINFO (OvidSP) (January 1993 to June 2009), CINAHL (EbscoHOST) (January 1993 to June 2009), LILACS (January 1993 to June 2009) and African Health Anthology (January 1993 to June 2009).We also reviewed grey literature (including trial registers) and reference lists of articles. We included randomised controlled trials (RCTs), quasi-randomised controlled trials (QRCTs), controlled before-after (CBA) studies, or interrupted time series (ITS) studies with at least three time points before and after the intervention. We selected only studies where it was possible to assess the effects of mobile phone messaging independent of other technologies or interventions. Two review authors independently assessed all studies against the inclusion criteria, with any disagreements resolved by a third review author. Study design features, characteristics of target populations, interventions and controls, and results data were extracted by two review authors and confirmed by

  11. Does information overload prevent chronic patients from reading self-management educational materials?

    Science.gov (United States)

    Liu, Chung-Feng; Kuo, Kuang-Ming

    2016-05-01

    Self-care management is becoming an important part of care for chronic patients. However, various kinds of self-management educational materials which government or healthcare institutions provide for patients may not achieve the expected outcome. One of the critical reasons affecting patients' use intention could be patients' perceived information overload regarding the self-management educational materials. This study proposed an extended model of the Theory of Planned Behavior (TPB), which incorporated perceived information overload, to explore if information overload will prevent chronic patients from reading educational materials for self-care management. The independent variables are attitude, subject norm, perceived behavior control and perceived information overload while the dependent variable is behavior intention to use the self-management educational materials. Perceived information overload is also referred to as an antecedent variable which may has impacts on attitude and perceived behavior control. The cross-sectional study interviewed newly diagnosed chronic patients with coronary artery disease, who are the potential users of the self-management educational materials, in a medical center in Taiwan. Data were analyzed using descriptive statistics of the basic information distribution of the respondents, and structural equation modeling to study the reliability and validity for testing hypotheses. A total of 110 respondents were enrolled in this study and successful interview data were collected from 106 respondents. The result indicates that the patients' perceived information overload of self-management educational materials was validated to have impacts on attitude and perceived behavioral control constructs of the TPB as well as contributing a direct impact on patients' intentions to use self-management educational materials. Besides, subjective norm and perceived behavioral control constructs were validated to have significant impacts on

  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. 'It was all intertwined': Illness representations and self-management in patients with cancer and anxiety/depression.

    Science.gov (United States)

    Richardson, Emma M; Scott, Jennifer L; Schüz, Natalie; Sanderson, Kristy; Schüz, Benjamin

    2017-09-01

    Cancer and anxiety/depression frequently co-occur, leading to poorer outcomes for these illnesses. However, the majority of existing research investigates how participants view single illnesses alone. This study aimed to explore the content of individuals' multimorbid representations and how these relate to their coping behaviours and self-management strategies for cancer and anxiety/depression. A semi-structured qualitative research design with theoretical thematic analysis. Multimorbid illness representations, coping behaviours, and self-management strategies. In interviews with 21 participants multimorbid representations varied, three participants viewed cancer and anxiety/depression as unrelated, five participants were uncertain about the relationship between cancer and anxiety/depression, and the majority of participants perceived cancer and anxiety/depression as related. This third group of participants often described relationships as causal, with representations having both positive and negative influences on coping behaviours and self-management strategies. Representations were shown to change over the course of the cancer experience, with fear of cancer recurrence and the influence of participants' most challenging illness also discussed. People hold multimorbid illness representations that can influence self-management. An awareness of these representations by researchers, health professionals, and patients is important for the creation of future interventions that aim to improve and maintain patient wellbeing.

  14. Adapting principles of chronic pain self-management to the workplace.

    Science.gov (United States)

    Shaw, William S; Tveito, Torill H; Geehern-Lavoie, Mary; Huang, Yueng-Hsiang; Nicholas, Michael K; Reme, Silje E; Wagner, Gregory; Pransky, Glenn

    2012-01-01

    To evaluate the extent to which the principles of chronic pain or illness self-management (SM) programs might be adapted to focus on the workplace concerns of adults with persistent or recurrent pain and lead to new workplace intervention opportunities. Eight SM programs were selected as representative evidence-based programs and then compared to extract common instructional elements. Elements were analyzed for potential application to four workplace problem domains identified by workers with pain: activity interference, negative self-perceptions, interpersonal challenges, and the inflexibility of work. Of 24 instructional elements, 17 were shared by at least half of the SM programs. Instructional elements judged to be best suited for dealing with workplace concerns included those focused on reducing pain and discomfort, making informed decisions, communicating effectively, and dealing with thoughts and feelings. However, aspects of the workplace that may alter the feasibility or effectiveness of SM strategies include the level of physical demands and limitations, job leeway, and the nature of workplace roles and relationships. Principles and methods of SM intervention programs are generally well suited to address pain-related problems in the workplace, but tailoring of messages may be necessary to incorporate the unique organizational, physical, and social aspects of work into psycho-educational programs.

  15. Illness perception, treatment beliefs, self-esteem, and self-efficacy as correlates of self-management in multiple sclerosis.

    Science.gov (United States)

    Wilski, M; Tasiemski, T

    2016-05-01

    Self-management of a disease is considered one of the most important factors affecting the treatment outcome. The research on the correlates of self-management in multiple sclerosis (MS) is limited. The aim of this study was to determine if personal factors, such as illness perception, treatment beliefs, self-esteem and self-efficacy, are correlates of self-management in MS. This cross-sectional study included 210 patients with MS who completed Multiple Sclerosis Self-Management Scale - Revised, Brief Illness Perception Questionnaire, Treatment Beliefs Scale, Rosenberg Self-Esteem Scale, and Generalized Self-Efficacy Scale. The patients were recruited from a MS rehabilitation clinic. Demographic data and illness-related problems of the study participants were collected with a self-report survey. Correlation and regression analyses were performed to determine associations between variables. Four factors: age at the time of the study (β = 0.14, P = 0.032), timeline (β = 0.16, P = 0.018), treatment control (β = 0.17, P = 0.022), and general self-efficacy (β = 0.19, P = 0.014) turned out to be the significant correlates of self-management in MS. The model including these variables explained 25% of variance in self-management in MS. Personal factors, such as general self-efficacy, perception of treatment control and realistic MS timeline perspective, are more salient correlates of self-management in MS than the objective clinical variables, such as the severity, type, and duration of MS. © 2015 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

  16. Construction and Validation of the Persian Version of Self-Management Scale of Chronic Spinal Pains

    Directory of Open Access Journals (Sweden)

    Mahtab Bazyari Meymand

    2017-04-01

    Full Text Available Background: Nowadays, one of the most important concepts in the health system associated with the treatment and reduction of chronic spinal pain is self- management. According to the gap of a tool to measure this concept, this study was performed with the aim of construction and validation of Persian version of self- management scale of chronic spinal pains. Materials & Methods: The present study was descriptive and correlational study that it was performed in 2016 on 301 patients with chronic spinal pains who were referred to the Persian Gulf Martyrs Hospital, Salman Farsi, Physiotherapeutic centers and orthopedist and physical medicine and spine rehabilitation doctors' offices in Bushehr by using convenient simple sampling. In this study, the statistical methods of exploratory and confirmatory factor analysis, convergent and content validity and test-retest reliability and Cronbach's alpha using SPSS 21 software and AMOS 20 were used. Results: Based on the results three factors including medical emotional and functional self management were extracted which overall, it could explain 39.32% of self-management variable of chronic spinal pain. Also, fitness indexes were estimated at an acceptable level (AGFI=0.91, GFI=0.95, NFI=0.92, GFI=0.95, RMSEA=0.08, c2/df=2.65. Content validity (0.80, convergent validity (with Nicolas self management of chronic pain, psychological hardiness, self-efficacy of pain, pain catastrophic thoughts and beliefs and perception of pain with coefficient 0.68, 0.47, 0.50, -0.26 and -0.33, test-retest reliability (0.87 and reliability using Cronbach's alpha (0.79 were confirmed. Conclusion: According to all the indicators of reliability and validity were estimated in a satisfactory condition, so it can be used in areas of research, evaluation and treatment of chronic spinal pain. 

  17. Self-management education for patients with chronic obstructive pulmonary disease: a systematic review

    NARCIS (Netherlands)

    Monninkhof, E.; van der Valk, P.; van der Palen, Jacobus Adrianus Maria; van Herwaarden, C.; Partridge, M.R.; Zielhuis, G.

    2003-01-01

    Background: The idea of self-management is to teach patients how to carry out the activities of daily living optimally in the face of their physiological impairment, and to prevent or decrease the severity of exacerbations by means of life style adaptation. In chronic obstructive pulmonary disease

  18. Self-management education for patients with chronic obstructive pulmonary disease: a systematic review.

    NARCIS (Netherlands)

    Monninkhof, E.M.; Valk, P.D.L.P.M. van der; Palen, J.A.M. van der; Herwaarden, C.L.A. van; Partridge, M.R.; Zielhuis, G.A.

    2003-01-01

    BACKGROUND: The idea of self-management is to teach patients how to carry out the activities of daily living optimally in the face of their physiological impairment, and to prevent or decrease the severity of exacerbations by means of life style adaptation. In chronic obstructive pulmonary disease

  19. Effects of a comprehensive self-management programme in patients with chronic obstructive pulmonary disease.

    NARCIS (Netherlands)

    Monninkhof, E.M.; Valk, P.D.L.P.M. van der; Palen, J.A.M. van der; Herwaarden, C.L.A. van; Zielhuis, G.A.

    2003-01-01

    The aim of this study was to assess the effects of a comprehensive self-management intervention on health-related quality of life (HRQoL), symptoms and walking distance in patients with stable moderately severe chronic obstructive pulmonary disease (COPD). This study was part of the overall COPD

  20. Self-management interventions for young people with chronic conditions: A systematic overview.

    NARCIS (Netherlands)

    R. Bal; Dr. A.L. van Staa; MSc M.I. Bal; Dr. J.N.T. Sattoe; Dr. P.D.D.M. Roelofs; Dr. H.S. Miedema

    2015-01-01

    OBJECTIVE: To provide a systematic overview of self-management interventions (SMI) for young people with chronic conditions with respect to content, formats, theories, and evaluated outcomes. METHODS: Embase, Medline, PsycINFO, Web-of-Science, CINAHL, and Cochrane were searched. Reviews'

  1. Self-management interventions for young people with chronic conditions: a systematic overview.

    NARCIS (Netherlands)

    Sattoe, J.N.T.; Bal, M.I.; Roelofs, P.D.D.M.; Bal, R.; Miedema, H.S.; Staa, A. van

    2015-01-01

    Objective: To provide a systematic overview of self-management interventions (SMI) for young people with chronic conditions with respect to content, formats, theories, and evaluated outcomes. Methods: Embase, Medline, PsycINFO, Web-of-Science, CINAHL, and Cochrane were searched. Reviews’ reference

  2. 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 ...

  3. Potential for Self-Management in Chronic Care: Nurses' Assessments of Patients.

    Science.gov (United States)

    Bos-Touwen, Irene; Dijkkamp, Evelien; Kars, Marijke; Trappenburg, Jaap; De Wit, Niek; Schuurmans, Marieke

    2015-01-01

    Although self-management interventions are, to some extent, individualized in clinical practice, the decision-making process is not fully understood. Exploring nurses' clinical reasoning about how and to what extent they currently tailor self-management support can provide new insights, enhancing process and outcome of chronic care. The aim of this study was to explore how nurses assess chronic patients concerning the potential of self-management and clinical reasoning with regard to tailoring care to the individual patient. A qualitative study was conducted using grounded theory. Semistructured interviews were held with 15 nurses working within chronic care. All interviews were carried out from February to July 2013. All nurses provided individualized care; however, a nurse's view of self-management influenced how tailoring was performed. Substantial differences were seen in patient assessments and how care was individualized. Patients' motivation, capacities, mindset, needs, and preferences were obtained through communication, experience, intuition, and trusting relationships. A typology with four patient types emerged: the unmotivated patient, the patient with limited capacities, the oblivious patient, and the ideal patient. Nurses elaborated on using different approaches for patients in each of these groups. A nurse's perception of self-management substantially impacted how care was individualized. Patient assessment was the key driver of tailoring, which was performed in various ways, and influenced how and the extent to which care was individualized. To enable responding to the unique wishes and needs of individual patients, both scientific and educational efforts need to be directed toward systematic assessments of patient capacity to self-manage their disease.

  4. The Roles of Social Support and Health Literacy in Self-Management Among Patients With Chronic Kidney Disease.

    Science.gov (United States)

    Chen, Yu-Chi; Chang, Li-Chun; Liu, Chieh-Yu; Ho, Ya-Fang; Weng, Shuo-Chun; Tsai, Tzu-I

    2018-05-01

    To investigate the relationships among social support, health literacy, and self-management, and the factors influencing self-management of chronic kidney disease (CKD). Cross-sectional study. A random sample of 410 patients was recruited from nephrology clinics. Data were collected using structured questionnaires and chart reviews from January 2013 to February 2014. Hierarchical regression analysis was used to determine the predictive factors of self-management behaviors and ∆R 2 to determine each variable's explanatory power. Health literacy and social support were positively correlated with self-management behaviors. Furthermore, social support, health literacy, and marital status were significant predictors of self-management behaviors. Social support had a relatively greater explanatory power for self-management behaviors than did health literacy. Particularly, healthcare provider support had the greatest influence on patients' self-management behaviors. Health literacy and social support play independent positive roles in self-management behaviors of patients with CKD, with social support having a particularly dominant role. Further research using a systems approach to improving self-management behaviors is necessary to clarify the role of social support. Health literacy and social support are independently and positively related to self-management. Social support, which is a system-level factor, is a relatively stronger and crucial predictor than is health literacy. Nurses have to refine self-management programs to focus on families and adopt a systems approach to help CKD patients improve their self-management behaviors. © 2018 Sigma Theta Tau International.

  5. Meta-analysis of self-management education for patients with chronic obstructive pulmonary disease

    Directory of Open Access Journals (Sweden)

    Hurley J

    2012-06-01

    Full Text Available BackgroundChronic obstructive pulmonary disease (COPD is a common disease frequently associated with high use of health services. Self-management education is a term applied to programs aimed at teaching patients skills that promote the self-efficacy needed to carry out medical regimens specific to control their disease. In COPD, the value of self-management education is not yet clear and a recent trial was terminated early because of excess mortality in the intervention group.ObjectivesThe objective of this meta-analysis was to assess the settings, methods and efficacy of COPD self-management education programs on patient outcomes and healthcare utilization.Selection criteriaRandomized controlled trials of self-management education in patients with COPD were identified. Studies focusing primarily on comprehensive pulmonary rehabilitation (education and exercise and studies without usual care as a control group were excluded.Search strategyWe searched PubMed (January 1985 to May 2012 as well as other meta-analysis and reviews.Data collection and analysisTwo reviewers (JH and RAR independently assessed study quality and extracted data. Investigators were contacted for additional information.Main resultsThe reviewers included 3 group comparisons drawn from 12 trials. The studies showed no significant change in mortality, with one study being an outlier compared to the others. However, the meta-analysis revealed a reduction in the probability of hospital admission among patients receiving self-management education compared to those receiving usual care.ConclusionsIt is likely that self-management education is associated with a reduction in hospital admissions with no change in mortality. However, because of heterogeneity in interventions, study populations, follow-up time, and outcome measures, data are still insufficient to formulate clear recommendations regarding the preferred curriculum and delivery method of self-management education programs

  6. Chronic condition self-management support for Aboriginal people: Adapting tools and training.

    Science.gov (United States)

    Battersby, Malcolm; Lawn, Sharon; Kowanko, Inge; Bertossa, Sue; Trowbridge, Coral; Liddicoat, Raylene

    2018-04-22

    Chronic conditions are major health problems for Australian Aboriginal people. Self-management programs can improve health outcomes. However, few health workers are skilled in self-management support and existing programs are not always appropriate in Australian Aboriginal contexts. The goal was to increase the capacity of the Australian health workforce to support Australian Aboriginal people to self-manage their chronic conditions by adapting the Flinders Program of chronic condition self-management support for Australian Aboriginal clients and develop and deliver training for health professionals to implement the program. Feedback from health professionals highlighted that the Flinders Program assessment and care planning tools needed to be adapted to suit Australian Aboriginal contexts. Through consultation with Australian Aboriginal Elders and other experts, the tools were condensed into an illustrated booklet called 'My Health Story'. Associated training courses and resources focusing on cultural safety and effective engagement were developed. A total of 825 health professionals  across Australia was trained and 61 people qualified as accredited trainers in the program, ensuring sustainability. The capacity and skills of the Australian health workforce to engage with and support Australian Aboriginal people to self-manage their chronic health problems significantly increased as a result of this project. The adapted tools and training were popular and appreciated by the health care organisations, health professionals and clients involved. The adapted tools have widespread appeal for cultures that do not have Western models of health care and where there are health literacy challenges. My Health Story has already been used internationally. © 2018 National Rural Health Alliance Ltd.

  7. Chronic Obstructive Pulmonary Disease and Heart Failure Self-Management Kits for Outpatient Transitions of Care.

    Science.gov (United States)

    Boylan, Paul; Joseph, Tina; Hale, Genevieve; Moreau, Cynthia; Seamon, Matthew; Jones, Renee

    2018-03-01

    To develop heart failure (HF) and chronic obstructive pulmonary disease (COPD) self-management kits in an accountable care organization (ACO) to facilitate patients' self-care and prevent hospital readmissions. Pharmacists practice in an outpatient-based ACO. They participate in interprofessional office visits with providers and independently manage maintenance pharmacotherapies. Pharmacists collaborate with an interprofessional team within the ACO including physicians, nurses, case managers, and paramedics. Two commonly encountered diseases are chronic COPD and HF. Reducing preventable readmissions for these conditions are important quality benchmarks and cost-saving strategies. Pharmacists were responsible for developing HF and COPD self-management kits containing patient education materials and prescriptions to facilitate self-care. Prior to kit development, pharmacists performed a literature review to determine the presence of previously published findings on these topics. The interprofessional team continually evaluates the successes and limitations of this initiative. Pharmacists developed training and instructions for ACO allied health professionals in an effort to incorporate the self-management kits in clinical practice. The initial literature search revealed no studies describing the intervention of interest. Innovative programs designed to help reduce preventable readmissions are lacking in primary care. Implementation of the self-management kits was accepted by interprofessional ACO leadership and is currently being integrated into allied health workflow. Patients at risk for having an exacerbation of COPD or HF should receive self-management strategies. Prompt therapy prior to exacerbations reduces hospital admissions and readmissions, speeds recovery, and slows disease progression. Pharmacist-facilitated implementation of self-management kits may be developed by interprofessional health care teams.

  8. Chronic hand eczema - self-management and prognosis

    DEFF Research Database (Denmark)

    Mollerup, Annette; Veien, Niels Kren; Johansen, Jeanne Duus

    2012-01-01

    the design of a randomised clinical trial to test a newly developed intervention of individual counselling versus conventional information. 300 patients consecutively referred to dermatologic treatment at two different settings are individually randomised to either the intervention programme, named 'The...... Healthy Skin Clinic' or to the control group. Block-wise randomisation according to setting and gender is carried out. The intervention offers a tool for self-monitoring; basic and specific individual counselling; the possibility of asynchronous communication with the intervention team; and an electronic......ABSTRACT: BACKGROUND: Hand eczema has a one-year prevalence of approximately 10 % in the general Danish population. Often the disease becomes chronic with numerous implications for the individual's daily life, occupation and quality of life. However, no guidelines of selfmanagement recommendations...

  9. New technology and illness self-management: Potential relevance for resource-poor populations in Asia.

    Science.gov (United States)

    Lucas, Henry

    2015-11-01

    Advances in technology have made it possible for many standard diagnostic and health monitoring procedures, traditionally carried out by qualified personnel within medical facilities, to be reliably undertaken by patients or carers in their own homes with a minimum of basic training. There has also been a dramatic increase in the number and diversity of both sources of information on health issues and the possibilities for sharing information and experiences over ICT-based social networks. It has been suggested that these developments have the potential to 'empower' patients, reducing their dependence on providers and possibly improving their quality of care by increasing the volume and timeliness of diagnostic data and encouraging active self-management of their condition, for example through lifestyle changes. Perhaps more significantly, it is also seen by many economies with ageing populations as a way to contain high and ever rising healthcare costs. It has also been suggested that a move to greater self-management supported by expert networks and smart phone technology could improve the treatment of many millions of patients with chronic diseases in low and middle income economies that are also confronting the potential cost implications of epidemiological and demographic transitions, combined with the higher expectations of a more educated and knowledgeable population. There is now limited evidence that some fairly basic e- and mHealth interventions, for example in the areas of MNCH, malaria and HIV/AIDS can have a positive impact, even in resource-poor contexts. The aim here is to explore the extent to which further investment in technology could play a role in the development of an effective and affordable health sector strategy for at least some developing economies. It is suggested that the effectiveness of the approach may be highly dependent on the specific health conditions addressed, the nature of existing health systems and the overall socio

  10. Self-management programmes for people living with chronic obstructive pulmonary disease: a call for a reconceptualisation.

    Science.gov (United States)

    Jonsdottir, Helga

    2013-03-01

    To synthesise findings from previously published studies on the effectiveness of self-management programmes for people with chronic obstructive pulmonary disease. Self-management is a widely valued concept to address contemporary issues of chronic health problems. Yet, findings of self-management programmes for people with chronic obstructive pulmonary disease are indecisive. Literature review of (1) previously published systematic reviews and (2) an integrative literature review. Synthesis of findings from previously published systematic reviews (n = 4) of the effectiveness of self-management programmes for people with chronic obstructive pulmonary disease and an integrated review that was performed on papers published between January 2007-June 2012 (n = 9). Findings demonstrate that there are few studies on the effectiveness of self-management programmes on people with chronic obstructive pulmonary disease despite more than a decade of research activities. Outcomes of the studies reveal some increase in health-related quality of life and reduction in use of healthcare resources. The methodological approaches vary, and the sample size is primarily small. Families are not acknowledged. Features of patient-centredness exist in self-management programmes, particularly in the more recent articles. The effectiveness of self-management programmes for people with chronic obstructive pulmonary disease remains indecisive. A reconceptualisation of self-management programmes is called for with attention to a family-centred, holistic and relational care focusing on living with and minimising the handicapping consequences of the health problems in their entirety. © 2013 Blackwell Publishing Ltd.

  11. Overview of Self-Management Resources Used by Canadian Chronic Kidney Disease Clinics: A National Survey.

    Science.gov (United States)

    Donald, Maoliosa; Gil, Sarah; Kahlon, Bhavneet; Beanlands, Heather; Straus, Sharon; Herrington, Gwen; Manns, Braden; Hemmelgarn, Brenda R

    2018-01-01

    Chronic kidney disease (CKD) clinics across Canada provide tailored care for patients with CKD with an aim to slow progression and prevent complications. These clinics provide CKD self-management resources; however, there is limited information about what resources are being used by clinics. We undertook a survey of CKD clinics across Canada to identify self-management resources for adults aged 18 years and over with CKD categories 1 to 5 and not requiring dialysis or transplant. To identify and collate self-management resources (eg, strategies, tools, educational materials) used by CKD clinics across Canada for adults with CKD (categories 1 to 5, not requiring kidney replacement therapy). Self-administered, semistructured electronic survey. Canadian CKD clinics with previously identified contact information. We contacted 57 CKD English-speaking clinics and invited them to complete an online survey. The survey was available from October 2016 to January 2017 and consisted of 17 questions regarding the use and attributes of self-management resources including topic, delivery format, provider, target population, where the intervention was provided, and resource languages. Forty-four clinics (77%) completed the survey. The most common topic was modality education provided in print format, by nurses. The most frequently used resource was the Kidney Foundation of Canada (KFOC) Living With Kidney Disease manual. We also identified that the majority of resources were available in English, targeting both patients and caregivers in the outpatient setting. Our survey included Canadian adult CKD clinics, which may not be generalizability to other settings, such as care of people with CKD in primary care. Adult CKD clinics across Canada provide some similar resources, but also provide many different self-management resources. Even though some of the same resources were used by multiple clinics, the way they were provided them (ie, provider, location, delivery format) varied by

  12. Canadian Men's Self-Management of Chronic Diseases: A Literature Analysis of Strategies for Dealing With Risks and Promoting Wellness.

    Science.gov (United States)

    Zanchetta, Margareth S; Maheu, Christine; Kolisnyk, Olesya; Mohamed, Mohamed; Guruge, Sepali; Kinslikh, Diana; Christopher, Joneet J; Stevenson, Melissa; SanJose, CaroLine; Sizto, Terry; Byam, Aaron

    2017-07-01

    This article reviews the qualitative research on men's self-management of mental and physical chronic diseases, with emphasis on strategies for dealing with risks and promoting wellness. Using Bardin's method of document analysis, it was focused on the findings of Canadian qualitative studies published in French or English from 2005 to 2011. Boltanski's theory on social uses of the body inspired the analysis. Living with a chronic disease threatens men's sense of masculinity and self-image, as well as their perceived ability to fulfill expected social roles. Social images of men's bodies influence how men express their emotions, attributes, and attitudes, or acknowledge the need for and seek social affirmation. Self-management has been documented in Canadian qualitative literature as a complex phenomenon influenced by the social environment, personal capacities, feelings, perceptions, and potentials. The extent of how all these features interact within the scope of men's mental and physical health and illness experiences was partially revealed in this study. The findings underscore the social invisibility of men's bodies, especially those of men facing social inequities. Attending to principles of social justice can ensure that future research on men's health will amplify the range of men's voices and allow them to be heard. Recommendations address also the international scientific community interested in advancing men's health research, especially in those countries that lack a national men's health policy.

  13. Self-management interventions for adults with chronic kidney disease: a scoping review.

    Science.gov (United States)

    Donald, Maoliosa; Kahlon, Bhavneet Kaur; Beanlands, Heather; Straus, Sharon; Ronksley, Paul; Herrington, Gwen; Tong, Allison; Grill, Allan; Waldvogel, Blair; Large, Chantel A; Large, Claire L; Harwood, Lori; Novak, Marta; James, Matthew T; Elliott, Meghan; Fernandez, Nicolas; Brimble, Scott; Samuel, Susan; Hemmelgarn, Brenda R

    2018-03-22

    To systematically identify and describe self-management interventions for adult patients with chronic kidney disease (CKD). Community-based. Adults with CKD stages 1-5 (not requiring kidney replacement therapy). Self-management strategies for adults with CKD. Using a scoping review, electronic databases and grey literature were searched in October 2016 to identify self-management interventions for adults with CKD stages 1-5 (not requiring kidney replacement therapy). Randomised controlled trials (RCTs), non-RCTs, qualitative and mixed method studies were included and study selection and data extraction were independently performed by two reviewers. Outcomes included behaviours, cognitions, physiological measures, symptoms, health status and healthcare. Fifty studies (19 RCTs, 7 quasi-experimental, 5 observational, 13 pre-post intervention, 1 mixed method and 5 qualitative) reporting 45 interventions were included. The most common intervention topic was diet/nutrition and interventions were regularly delivered face to face. Interventions were administered by a variety of providers, with nursing professionals the most common health professional group. Cognitions (ie, changes in general CKD knowledge, perceived self-management and motivation) were the most frequently reported outcome domain that showed improvement. Less than 1% of the interventions were co-developed with patients and 20% were based on a theory or framework. There was a wide range of self-management interventions with considerable variability in outcomes for adults with CKD. Major gaps in the literature include lack of patient engagement in the design of the interventions, with the majority of interventions not applying a behavioural change theory to inform their development. This work highlights the need to involve patients to co-developed and evaluate a self-management intervention based on sound theories and clinical evidence. © Article author(s) (or their employer(s) unless otherwise stated in the

  14. Patient-professional partnerships and chronic back pain self-management: a qualitative systematic review and synthesis.

    Science.gov (United States)

    Fu, Yu; McNichol, Elaine; Marczewski, Kathryn; Closs, S José

    2016-05-01

    Chronic back pain is common, and its self-management may be a lifelong task for many patients. While health professionals can provide a service or support for pain, only patients can actually experience it. It is likely that optimum self-management of chronic back pain may only be achieved when patients and professionals develop effective partnerships which integrate their complementary knowledge and skills. However, at present, there is no evidence to explain how such partnerships can influence patients' self-management ability. This review aimed to explore the influence of patient-professional partnerships on patients' ability to self-manage chronic back pain, and to identify key factors within these partnerships that may influence self-management. A systematic review was undertaken, aiming to retrieve relevant studies using any research method. Five databases were searched for papers published between 1980 and 2014, including Cochrane Library, CINAHL, Medline, EMBASE and PsycINFO. Eligible studies were those reporting on patients being supported by professionals to self-manage chronic back pain; patients being actively involved for self-managing chronic back pain; and the influence of patient-professional partnerships on self-management of chronic back pain. Included studies were critically appraised for quality, and findings were extracted and analysed thematically. A total of 738 studies were screened, producing 10 studies for inclusion, all of which happened to use qualitative methods. Seven themes were identified: communication, mutual understanding, roles of health professionals, information delivery, patients' involvement, individualised care and healthcare service. These themes were developed into a model suggesting how factors within patient-professional partnerships influence self-management. Review findings suggest that a partnership between patients and professionals supports patients' self-management ability, and effective communication is a

  15. Using health trainers to promote self-management of chronic pain: can it work?

    Science.gov (United States)

    Harris, Janet; Williams, Tim; Hart, Ollie; Hanson, Chris; Johnstone, Gareth; Muthana, Aziz; Nield, Chris

    2014-02-01

    In 2011, the Sheffield Primary Care Trust piloted a Health Trainer (HT) programme targeted specifically to people with chronic pain. The programme aimed to determine whether patients presenting to primary care with chronic pain would benefit from self-management support, thereby reducing the burden on primary care and secondary care services. We conducted a formative mixed-methods evaluation of the pilot programme, focusing on four aspects of implementation: general practitioner (GP) referral to the programme, HT's ability to use cognitive behavioural (CB) approaches, short-term outcomes for clients and adequacy of resources. Qualitative data were collected via interviews with GPs, HTs and the chronic pain team; supervision sessions with HTs; and client case studies. Quantitative data were collected on satisfaction with training, HT's self-reported confidence to implement CB and clients' self-rated well-being before and after participation. A total of 143 clients with pain for 1 year or more were referred, exceeding the projected 90 referrals by over 50%. A total of 70% of the clients came from the most deprived areas of Sheffield, 40% were listed as permanently sick/disabled and only 20% were working. Qualitative analysis indicated that the CB training was delivered as intended. Clients reported that 75% of their goals were either achieved or partly achieved, and at follow-up 43% of them reported maintaining strategies for self-management. Financial resources were supplemented by indirect resources, including GP 'champions' with a special interest in pain, and a multidisciplinary chronic pain team. The prior history of working with community organizations was critical in ensuring credibility in client communities and addressing client needs. A HT programme promoting self-management of chronic pain can be successfully implemented when supported by community organisations. Preliminary data indicate that the programme can be instrumental in helping clients to

  16. [Establishing self-management for chronic spinal cord injury patients: a qualitative investigation].

    Science.gov (United States)

    Okochi, Ayako; Tadaka, Etsuko

    2015-01-01

    Self-management is essential for individuals with chronic cervical spinal cord injury, but some cases of self-neglect have been reported. The objective of this study was to examine the establishment of self-management in order to help inform community care practice. This was a qualitative study applying a grounded theory approach with semi-structured home interviews. We interviewed 29 individuals with cervical spinal cord injuries (aged 26-77 years) who were members of each of the three branches of the nationwide self-help group, or the clients of a home-visit nursing care station. Qualitative analysis was implemented from a time transition perspective consisting of the faint awareness period, the seeking period, and the adaptation period. The analysis included the perceptions and methods of self-management. The process of establishing self-management was abstracted into a core category of "continuous adaptation to minimize the extent to which the individual's life was disrupted and to allow them to continue to live within the community". This in turn consisted of seven categories. In the faint awareness period, subjects perceived that they "hardly recognized health maintenance needs", that they had difficulties in acknowledging the necessity of controlling physical conditions, and that they were dependent on caregivers. In the seeking period, they were "driven by handling uncontrollable changes" and they coped with those changes in their own way and sometimes did not consider it necessary to see a doctor. In this period, a process of "searching for the methods of being healthy somehow" begun and they started to understand the degree to which they could cope without medication, together with their own responsibilities, and searched for the best coping methods and acted on advice. In the adaptation period, individuals were "struggling to continue the established health methods"; "managing stress"; "prioritizing their own beliefs over medical regimens"; and

  17. 'The apple doesn't fall far from the tree': the role of parents in chronic disease self-management.

    Science.gov (United States)

    Orrell-Valente, Joan K; Cabana, Michael D

    2008-12-01

    Medical nonadherence has been termed the "Achilles' heel of modern healthcare." In considering the need to improve medical adherence among chronically ill children, it is necessary to understand parent adherence. Parents have long been acknowledged to be the primary socialization agents in children's development across the various domains of functioning. Through communication of their beliefs, the behavior they model, and direct training, parents exert a powerful influence on the development of children's beliefs and behavior. Adherence may be similarly conceptualized as a socialization process, in which parents influence the development of children's beliefs and behavior regarding their eventual disease self-management. Given this perspective, it is important for clinicians to emphasize the need for parental adherence to a child's treatment regimen. An increased focus on parental adherence will require an investment of time and effort that will pay dividends in the long term.

  18. Chronic disease self-management education courses: utilization by low-income, middle-aged participants.

    Science.gov (United States)

    Horrell, Lindsey N; Kneipp, Shawn M; Ahn, SangNam; Towne, Samuel D; Mingo, Chivon A; Ory, Marcia G; Smith, Matthew Lee

    2017-06-27

    Individuals living in lower-income areas face an increased prevalence of chronic disease and, oftentimes, greater barriers to optimal self-management. Disparities in disease management are seen across the lifespan, but are particularly notable among middle-aged adults. Although evidence-based Chronic Disease Self-management Education courses are available to enhance self-management among members of this at-risk population, little information is available to determine the extent to which these courses are reaching those at greatest risk. The purpose of this study is to compare the extent to which middle-aged adults from lower- and higher-income areas have engaged in CDSME courses, and to identify the sociodemographic characteristics of lower-income, middle aged participants. The results of this study were produced through analysis of secondary data collected during the Communities Putting Prevention to Work: Chronic Disease Self-Management Program initiative. During this initiative, data was collected from 100,000 CDSME participants across 45 states within the United States, the District of Columbia, and Puerto Rico. Of the entire sample included in this analysis (19,365 participants), 55 people lived in the most impoverished counties. While these 55 participants represented just 0.3% of the total study sample, researchers found this group completed courses more frequently than participants from less impoverished counties once enrolled. These results signal a need to enhance participation of middle-aged adults from lower-income areas in CDSME courses. The results also provide evidence that can be used to inform future program delivery choices, including decisions regarding recruitment materials, program leaders, and program delivery sites, to better engage this population.

  19. The self-management experience of patients with type 2 diabetes and chronic kidney disease: A qualitative study.

    Science.gov (United States)

    Shirazian, Shayan; Crnosija, Natalie; Weinger, Katie; Jacobson, Alan M; Park, Joonho; Tanenbaum, Molly L; Gonzalez, Jeffrey S; Mattana, Joseph; Hammock, Amy C

    2016-03-01

    The purpose of this study was to explore views related to the self-management of type 2 diabetes and chronic kidney disease. We conducted three semi-structured focus groups in participants with type 2 diabetes and chronic kidney disease. Interviews were transcribed, coded, and analyzed using thematic analysis. Credibility was supported through triangulation of data sources and the use of multiple investigators from different disciplines. Twenty-three adults participated. Three major themes were identified: emotional reactions to health state, the impact of family dynamics on self-management, and the burden of self-management regimens. Family dynamics were found to be a barrier and support to self-management, while complicated self-management regimens were found to be a barrier. Additionally, participants expressed several emotional reactions related to their CKD status, including regret related to having developed CKD and distress related both to their treatment regimens and the future possibility of dialysis. This exploratory study of patients with type 2 diabetes and chronic kidney disease describes barriers and supports to self-management and emotional reactions to chronic kidney disease status. Future research should confirm these findings in a larger population and should include family members and/or health care providers to help further define problems with self-management in patients with type 2 diabetes and chronic kidney disease. © The Author(s) 2015.

  20. A systematic review of outcomes of chronic disease self-management interventions.

    Science.gov (United States)

    Nolte, Sandra; Osborne, Richard H

    2013-09-01

    To carry out a systematic review of program outcomes used in the evaluation of group-based self-management interventions aimed at people with arthritis and other chronic conditions. The systematic search was performed across databases MEDLINE, EMBASE, CINAHL, and PsycINFO. Both between-group and within-group effect sizes (ES) were calculated. Results were interpreted as small (ES ~ 0.2), medium (ES ~ 0.5), or large (ES ~ 0.8) effects. The majority of 18 included trials investigated the effectiveness of arthritis-specific interventions. Across most outcomes, small effects on course participants were shown. While effects on knowledge were large (between-group ES = 0.78), effects on clinical outcomes such as pain (ES = 0.10) were negligible to small. This paper is consistent with other reviews in this area, suggesting that people with arthritis receive only marginal benefits from participating in chronic disease self-management interventions. When looking at the types of outcomes that trials are based on, however, alternative explanations for these results seem probable. As evaluations heavily rely on patient self-report, current approaches to program evaluation may not be sufficient to assess the intended impact of self-management education. An in-depth investigation of the types of outcomes assessed is provided in a separate paper.

  1. Can a Self-Management Education Program for Patients with Chronic Obstructive Pulmonary Disease Improve Quality of Life ?

    Directory of Open Access Journals (Sweden)

    Manon Labrecque

    2011-01-01

    Full Text Available OBJECTIVE: To assess the effects of a self-management program on health-related quality of life (HRQoL and morbidity commonly associated with chronic obstructive pulmonary disease (COPD.

  2. Nursing clinical practice changes to improve self-management in chronic obstructive pulmonary disease.

    Science.gov (United States)

    Padilha, J M; Sousa, P A F; Pereira, F M S

    2018-03-01

    To propose nursing clinical practice changes to improve the development of patient self-management. Chronic obstructive pulmonary disease is one of the main causes of chronic morbidity, loss of quality of life and high mortality rates. Control of the disease's progression, the preservation of autonomy in self-care and maintenance of quality of life are extremely challenging for patients to execute in their daily living. However, there is still little evidence to support nursing clinical practice changes to improve the development of self-management. A participatory action research study was performed in a medicine inpatient department and the outpatient unit of a Portuguese hospital. The sample comprised 52 nurses and 99 patients. For data collection, we used interviews, participant observation and content analysis. The main elements of nursing clinical practice that were identified as a focus for improvement measures were the healthcare model, the organization of healthcare and the documentation of a support decision-making process. The specific guidelines, the provision of material to support decision-making and the optimization of information sharing between professionals positively influenced the change process. This change improved the development of self-management skills related to the awareness of the need for 'change', hope, involvement, knowledge and abilities. The implemented changes have improved health-related behaviours and clinical outcomes. To support self-management development skills, an effective nursing clinical practice change is needed. This study has demonstrated the relevance of a portfolio of techniques and tools to help patients adopt healthy behaviours. The involvement and participation of nurses and patients in the conceptualization, implementation and evaluation of policy change are fundamental issues to improve the quality of nursing care and clinical outcomes. © 2017 International Council of Nurses.

  3. Creating a sustainable collaborative consumer health application for chronic disease self-management.

    Science.gov (United States)

    Johnson, Constance M; McIlwain, Steve; Gray, Oliver; Willson, Bradley; Vorderstrasse, Allison

    2017-07-01

    As the prevalence of chronic diseases increase, there is a need for consumer-centric health informatics applications that assist individuals with disease self-management skills. However, due to the cost of development of these applications, there is also a need to build a disease agnostic architecture so that they could be reused for any chronic disease. This paper describes the architecture of a collaborative virtual environment (VE) platform, LIVE©, that was developed to teach self-management skills and provide social support to those individuals with type 2 diabetes. However, a backend database allows for the application to be easily reused for any chronic disease. We tested its usability in the context of a larger randomized controlled trial of its efficacy. The usability was scored as 'good' by half of the participants in the evaluation. Common errors in the testing and solutions to address initial usability issues are discussed. Overall, LIVE© represents a usable and generalizable platform that will be adapted to other chronic diseases and health needs in future research and applications. Copyright © 2017 Elsevier Inc. All rights reserved.

  4. The effects of patient-professional partnerships on the self-management and health outcomes for patients with chronic back pain : a quasi-experimental study

    OpenAIRE

    Fu, Yu; Yu, Ge; McNichol, Elaine; Marczewski, Kath; Closs, S. José

    2016-01-01

    Background: Self-management may be a lifelong task for patients with chronic back pain. Research suggests that chronic pain self-management programmes have beneficial effects on patients? health outcome. Contemporary pain management theories and models also suggest that a good patient-professional partnership enhances patients? ability to self-manage their condition.

  5. Psychometric evaluation of a new instrument to measure disease self-management of the early stage chronic kidney disease patients.

    Science.gov (United States)

    Lin, Chiu-Chu; Wu, Chia-Chen; Wu, Li-Min; Chen, Hsing-Mei; Chang, Shu-Chen

    2013-04-01

    This study aims to develop a valid and reliable chronic kidney disease self-management instrument (CKD-SM) for assessing early stage chronic kidney disease patients' self-management behaviours. Enhancing early stage chronic kidney disease patients' self-management plays a key role in delaying the progression of chronic kidney disease. Healthcare provider understanding of early stage chronic kidney disease patients' self-management behaviours can help develop effective interventions. A valid and reliable instrument for measuring chronic kidney disease patients' self-management behaviours is needed. A cross-sectional descriptive study collected data for principal components analysis with oblique rotation. Mandarin- or Taiwanese-speaking adults with chronic kidney disease (n=252) from two medical centres and one regional hospital in Southern Taiwan completed the CKD-SM. Construct validity was evaluated by exploratory factor analysis. Internal consistency and test-retest reliability were estimated by Cronbach's alpha and Pearson correlation coefficients. Four factors were extracted and labelled self-integration, problem-solving, seeking social support and adherence to recommended regimen. The four factors accounted for 60.51% of the total variance. Each factor showed acceptable internal reliability with Cronbach's alpha from 0.77-0.92. The test-retest correlations for the CKD-SM was 0.72. The psychometric quality of the CKD-SM instrument was satisfactory. Research to conduct a confirmatory factor analysis to further validate this new instrument's construct validity is recommended. The CKD-SM instrument is useful for clinicians who wish to identify the problems with self-management among chronic kidney disease patients early. Self-management assessment will be helpful to develop intervention tailored to the needs of the chronic kidney disease population. © 2013 Blackwell Publishing Ltd.

  6. Evaluation of a self-management programme for patients with chronic obstructive pulmonary disease.

    Science.gov (United States)

    Turner, Ap; Anderson, Jk; Wallace, Lm; Kennedy-Williams, P

    2014-06-30

    Self-management is becoming an important part of treatment for patients with chronic obstructive pulmonary disease (COPD). We conducted a longitudinal survey of patients with COPD who attended a 7-week group-based lay and clinician co-delivered COPD self-management programme (SMP)to see whether they became more activated, enjoyed better health status, and quality of life, were less psychologically distressed and improved their self-management abilities. The main analysis was a per-protocol analysis (N = 131), which included only patients who attended ≥5 SMP sessions and who returned a 6-month follow-up questionnaires. Changes in the mean values of the patient outcomes were compared over time using paired t tests and general linear model for repeated measures. Patient activation significantly improved 6 months after the SMP (p management abilities (self-monitoring and insight p = 0.03), constructive attitude shift (p = 0.04), skills and technique acquisition, (p management abilities. © The Author(s) 2014.

  7. Activating Patients for Sustained Chronic Disease Self-Management: Thinking Beyond Clinical Outcomes.

    Science.gov (United States)

    Dye, Cheryl J; Williams, Joel E; Evatt, Janet H

    2016-04-01

    This article describes the impact of an 8-week community program implemented by trained volunteers on the hypertension self-management of 185 patients who were batch randomized to intervention or wait-list control groups. Compared with control group participants, a higher proportion of treatment group participants moved from the cognitive to behavioral stages of motivational readiness for being physically active (P healthy eating habits (P = .001), handling stress well (P = .001), and living an overall healthy lifestyle (P = .003). They also demonstrated a greater average increase in perceived competence for self-management, F(1.134) = 4.957, P = .028, η2 = .036, and a greater increase in mean hypertension-related knowledge, F(1.160) = 16.571, P < .0005, η(2) = .094. Enduring lifestyle changes necessary for chronic disease self-management require that psychosocial determinants of health behavior are instilled, which is typically beyond standard medical practice. We recommend peer-led, community-based programs as a complement to clinical care and support the increasing health system interest in promoting population health beyond clinical walls. © The Author(s) 2016.

  8. Applying the Chronic Care Model to Support Ostomy Self-Management: Implications for Oncology Nursing Practice.

    Science.gov (United States)

    Ercolano, Elizabeth; Grant, Marcia; McCorkle, Ruth; Tallman, Nancy J; Cobb, Martha D; Wendel, Christopher; Krouse, Robert

    2016-06-01

    Living with an ostomy requires daily site and equipment care, lifestyle changes, emotional management, and social role adjustments. The Chronic Care Ostomy Self-Management Training Program (CCOSMTP) offers an ostomy self-management curriculum, emphasizing problem solving, self-efficacy, cognitive reframing, and goal setting. The qualitative method of content analysis was employed to categorize self-reported goals of ostomates identified during a nurse-led feasibility trial testing the CCOSMTP. Thirty-eight ostomates identified goals at three CCOSMTP sessions. The goals were classified according to the City of Hope Health-Related Qualify of Life Model, a validated multidimensional framework, describing physical, psychological, social, and spiritual ostomy-related effects. Nurse experts coded the goals independently and then collaborated to reach 100% consensus on the goals' classification. A total of 118 goals were identified by 38 participants. Eighty-seven goals were physical, related to the care of the skin, placement of the pouch or bag, and management of leaks; 26 were social goals, which addressed engagement in social or recreational roles and daily activities; and 5 were psychological goals, which were related to confidence and controlling negative thinking. Although the goals of survivors of cancer with an ostomy are variable, physical goals are most common in self-management training.

  9. Factors contributing to intervention fidelity in a multi-site chronic disease self-management program.

    Science.gov (United States)

    Perrin, Karen M; Burke, Somer Goad; O'Connor, Danielle; Walby, Gary; Shippey, Claire; Pitt, Seraphine; McDermott, Robert J; Forthofer, Melinda S

    2006-10-26

    Disease self-management programs have been a popular approach to reducing morbidity and mortality from chronic disease. Replicating an evidence-based disease management program successfully requires practitioners to ensure fidelity to the original program design. The Florida Health Literacy Study (FHLS) was conducted to investigate the implementation impact of the Pfizer, Inc. Diabetes Mellitus and Hypertension Disease Self-Management Program based on health literacy principles in 14 community health centers in Florida. The intervention components discussed include health educator recruitment and training, patient recruitment, class sessions, utilization of program materials, translation of program manuals, patient retention and follow-up, and technical assistance. This report describes challenges associated with achieving a balance between adaptation for cultural relevance and fidelity when implementing the health education program across clinic sites. This balance was necessary to achieve effectiveness of the disease self-management program. The FHLS program was implemented with a high degree of fidelity to the original design and used original program materials. Adaptations identified as advantageous to program participation are discussed, such as implementing alternate methods for recruiting patients and developing staff incentives for participation. Effective program implementation depends on the talent, skill and willing participation of clinic staff. Program adaptations that conserve staff time and resources and recognize their contribution can increase program effectiveness without jeopardizing its fidelity.

  10. Factors contributing to intervention fidelity in a multi-site chronic disease self-management program

    Directory of Open Access Journals (Sweden)

    Pitt Seraphine

    2006-10-01

    Full Text Available Abstract Background and objectives Disease self-management programs have been a popular approach to reducing morbidity and mortality from chronic disease. Replicating an evidence-based disease management program successfully requires practitioners to ensure fidelity to the original program design. Methods The Florida Health Literacy Study (FHLS was conducted to investigate the implementation impact of the Pfizer, Inc. Diabetes Mellitus and Hypertension Disease Self-Management Program based on health literacy principles in 14 community health centers in Florida. The intervention components discussed include health educator recruitment and training, patient recruitment, class sessions, utilization of program materials, translation of program manuals, patient retention and follow-up, and technical assistance. Results This report describes challenges associated with achieving a balance between adaptation for cultural relevance and fidelity when implementing the health education program across clinic sites. This balance was necessary to achieve effectiveness of the disease self-management program. The FHLS program was implemented with a high degree of fidelity to the original design and used original program materials. Adaptations identified as advantageous to program participation are discussed, such as implementing alternate methods for recruiting patients and developing staff incentives for participation. Conclusion Effective program implementation depends on the talent, skill and willing participation of clinic staff. Program adaptations that conserve staff time and resources and recognize their contribution can increase program effectiveness without jeopardizing its fidelity.

  11. Patient-centered activity monitoring in the self-management of chronic health conditions.

    Science.gov (United States)

    Chiauzzi, Emil; Rodarte, Carlos; DasMahapatra, Pronabesh

    2015-04-09

    As activity tracking devices become smaller, cheaper, and more consumer-accessible, they will be used more extensively across a wide variety of contexts. The expansion of activity tracking and personal data collection offers the potential for patient engagement in the management of chronic diseases. Consumer wearable devices for activity tracking have shown promise in post-surgery recovery in cardiac patients, pulmonary rehabilitation, and activity counseling in diabetic patients, among others. Unfortunately, the data generated by wearable devices is seldom integrated into programmatic self-management chronic disease regimens. In addition, there is lack of evidence supporting sustained use or effects on health outcomes, as studies have primarily focused on establishing the feasibility of monitoring activity and the association of measured activity with short-term benefits. Monitoring devices can make a direct and real-time impact on self-management, but the validity and reliability of measurements need to be established. In order for patients to become engaged in wearable data gathering, key patient-centered issues relating to usefulness in care, motivation, the safety and privacy of information, and clinical integration need to be addressed. Because the successful usage of wearables requires an ability to comprehend and utilize personal health data, the user experience should account for individual differences in numeracy skills and apply evidence-based behavioral science principles to promote continued engagement. Activity monitoring has the potential to engage patients as advocates in their personalized care, as well as offer health care providers real world assessments of their patients' daily activity patterns. This potential will be realized as the voice of the chronic disease patients is accounted for in the design of devices, measurements are validated against existing clinical assessments, devices become part of the treatment 'prescription', behavior

  12. Validation of the shortened Perceived Medical Condition Self-Management Scale in patients with chronic disease.

    Science.gov (United States)

    Wild, Marcus G; Ostini, Remo; Harrington, Magdalena; Cavanaugh, Kerri L; Wallston, Kenneth A

    2018-05-21

    Self-efficacy, or perceived competence, has been identified as an important factor in self-management behaviors and health outcomes in patients with chronic disease. Measures of self-management self-efficacy are currently available for multiple forms of chronic disease. One established measure is the 8-item Perceived Medical Condition Self-Management Scale (PMCSMS). This study investigated the use of the PMCSMS in samples of patients with a chronic disease to develop an abbreviated version of the scale that could be more readily used in clinical contexts or in large population health cohort studies. The PMCSMS was administered as either a generic scale or as a disease-specific scale. The results of analyses using item response theory and classical test theory methods indicated that using 4 items of the scale resulted in similar internal consistency (α = .70-0.90) and temporal stability (test-retest r = .75 after 2 to 4 weeks) to the 8-item PMCSMS (r = .81 after 2 to 4 weeks). The 4 items selected had the greatest discriminability among participants (α parameters = 2.49-3.47). Scores from both versions also demonstrated similar correlations with related constructs such as health literacy (r = .13-0.29 vs. 0.14-0.27), self-rated health (r = .17-0.48 vs. 0.26-0.50), social support (r = .21-0.32 vs. 0.25-0.34), and medication adherence (r = .20-0.24 vs. 0.20-0.25). The results of this study indicate that 4-item PMCSMS scores are equally valid but more efficient, and have the potential to be beneficial for both research and clinical applications. (PsycINFO Database Record (c) 2018 APA, all rights reserved).

  13. 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...

  14. Chronic pain self-management for older adults: a randomized controlled trial [ISRCTN11899548

    Directory of Open Access Journals (Sweden)

    Cain Kevin C

    2004-07-01

    Full Text Available Abstract Background Chronic pain is a common and frequently disabling problem in older adults. Clinical guidelines emphasize the need to use multimodal therapies to manage persistent pain in this population. Pain self-management training is a multimodal therapy that has been found to be effective in young to middle-aged adult samples. This training includes education about pain as well as instruction and practice in several management techniques, including relaxation, physical exercise, modification of negative thoughts, and goal setting. Few studies have examined the effectiveness of this therapy in older adult samples. Methods/Design This is a randomized, controlled trial to assess the effectiveness of a pain self-management training group intervention, as compared with an education-only control condition. Participants are recruited from retirement communities in the Pacific Northwest of the United States and must be 65 years or older and experience persistent, noncancer pain that limits their activities. The primary outcome is physical disability, as measured by the Roland-Morris Disability Questionnaire. Secondary outcomes are depression (Geriatric Depression Scale, pain intensity (Brief Pain Inventory, and pain-related interference with activities (Brief Pain Inventory. Randomization occurs by facility to minimize cross-contamination between groups. The target sample size is 273 enrolled, which assuming a 20% attrition rate at 12 months, will provide us with 84% power to detect a moderate effect size of .50 for the primary outcome. Discussion Few studies have investigated the effects of multimodal pain self-management training among older adults. This randomized controlled trial is designed to assess the efficacy of a pain self-management program that incorporates physical and psychosocial pain coping skills among adults in the mid-old to old-old range.

  15. Understanding differences between caregivers and non-caregivers in completer rates of Chronic Disease Self-Management Program.

    Science.gov (United States)

    Shi, J; McCallion, P; Ferretti, L A

    2017-06-01

    The Chronic Disease Self-Management Program (CDSMP) was developed to advance participants' self-care of chronic illness and may be offered to both individuals with chronic conditions and their caregivers. Previous studies of CDSMP have identified multiple resulting health benefits for participants as well as factors associated with participants' completion rates. This study investigated differences on these issues between caregiving and non-caregiving participants. Secondary analysis using regression analysis to predict the outcome. Baseline data were collected directly from adult (over 18 years) participants of CDSMP workshops in New York State from 2012 to 2015 (n = 2685). Multi-level logistic regression analysis was used to compare the difference on completion of workshops (attended four or more of sessions) and contributing factors with the independent variable of whether participants provided care/assistance to a family member or friends with long-term illness or disability. Additional individual-level variables controlled for in the model were age, gender, race/ethnicity, living arrangement, education, the number of chronic conditions and disabilities; as were workshop-level characteristics of class size, language used, workshop leader experience, location urbanity and delivery site type. Participants who provided care to family or friends were 28% more likely to complete the workshop compared with those who did not (odds ratio = 1.279, P < 0.05). Different factors influenced the completion of CDSMP workshop for caregivers and non-caregivers. People who provide care to others appeared to have stronger motivation to complete the workshops with greater benefits. Agencies offering CDSMP should encourage caregivers to attend. Copyright © 2017. Published by Elsevier Ltd.

  16. Randomized controlled trial of a psychoeducation program for the self-management of chronic cardiac pain.

    Science.gov (United States)

    McGillion, Michael H; Watt-Watson, Judy; Stevens, Bonnie; Lefort, Sandra M; Coyte, Peter; Graham, Anthony

    2008-08-01

    Cardiac pain arising from chronic stable angina (CSA) is a cardinal symptom of coronary artery disease and has a major negative impact on health-related quality of life (HRQL), including pain, poor general health status, and inability to self-manage. Current secondary prevention approaches lack adequate scope to address CSA as a multidimensional ischemic and persistent pain problem. This trial evaluated the impact of a low-cost six-week angina psychoeducation program, entitled The Chronic Angina Self-Management Program (CASMP), on HRQL, self-efficacy, and resourcefulness to self-manage anginal pain. One hundred thirty participants were randomized to the CASMP or three-month wait-list usual care; 117 completed the study. Measures were taken at baseline and three months. General HRQL was measured using the Medical Outcomes Study 36-Item Short Form and the disease-specific Seattle Angina Questionnaire (SAQ). Self-efficacy and resourcefulness were measured using the Self-Efficacy Scale and the Self-Control Schedule, respectively. The mean age of participants was 68 years, 80% were male. Analysis of variance of change scores yielded significant improvements in treatment group physical functioning [F=11.75(1,114), Phealth [F=10.94(1,114), P=0.001] aspects of generic HRQL. Angina frequency [F=5.57(1,115), P=0.02], angina stability [F=7.37(1,115), P=0.001], and self-efficacy to manage disease [F=8.45(1,115), P=0.004] were also significantly improved at three months. The CASMP did not impact resourcefulness. These data indicate that the CASMP was effective for improving physical functioning, general health, anginal pain symptoms, and self-efficacy to manage pain at three months and provide a basis for long-term evaluation of the program.

  17. Measurement Tools for Adherence to Non-Pharmacologic Self-Management Treatment for Chronic Musculoskeletal Conditions: A Systematic Review

    NARCIS (Netherlands)

    Hall, A.M.; Kamper, S.J.; Hernon, M.; Hughes, K.; Kelly, G.; Lonsdale, C.; Hurley, D.A.; Ostelo, R.W.J.G.

    2015-01-01

    Objectives To identify measures of adherence to nonpharmacologic self-management treatments for chronic musculoskeletal (MSK) populations; and to report on the measurement properties of identified measures. Data Sources Five databases were searched for all study types that included a chronic MSK

  18. Stanford Chronic Disease Self-Management Program in myotonic dystrophy: New opportunities for occupational therapists: Stanford Chronic Disease Self-Management Program dans la dystrophie myotonique : De nouvelles opportunités pour les ergothérapeutes.

    Science.gov (United States)

    Raymond, Kateri; Levasseur, Mélanie; Chouinard, Maud-Christine; Mathieu, Jean; Gagnon, Cynthia

    2016-06-01

    Chronic disease self-management is a priority in health care. Personal and environmental barriers for populations with neuromuscular disorders might diminish the efficacy of self-management programs, although they have been shown to be an effective intervention in many populations. Owing to their occupational expertise, occupational therapists might optimize self-management program interventions. This study aimed to adapt the Stanford Chronic Disease Self-Management Program (CDSMP) for people with myotonic dystrophy type 1 (DM1) and assess its acceptability and feasibility in this population. Using an adapted version of the Stanford CDSMP, a descriptive pilot study was conducted with 10 participants (five adults with DM1 and their caregivers). A semi-structured interview and questionnaires were used. The Stanford CDSMP is acceptable and feasible for individuals with DM1. However, improvements are required, such as the involvement of occupational therapists to help foster concrete utilization of self-management strategies into day-to-day tasks using their expertise in enabling occupation. Although adaptations are needed, the Stanford CDSMP remains a relevant intervention with populations requiring the application of self-management strategies. © CAOT 2016.

  19. 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...

  20. Factors affecting patients’ self-management in chronic venous disorders: a single-center study

    Directory of Open Access Journals (Sweden)

    Barański K

    2016-08-01

    Full Text Available Kamil Barański,1,2 Jerzy Chudek2,3 1Department of Epidemiology, Medical School in Katowice, 2Department of Pathophysiology, Medical University of Silesia, Katowice, 3Angiology Outpatient Clinic “Combi-Med,” Częstochowa, Poland Background: The conservative treatment of chronic venous disorders (CVDs includes pharmacotherapy, compression therapy, physiotherapy, and changes in lifestyle. These methods are available without prescription and not reimbursed by Polish National Health Service. Adherence to therapy is affected by poorly characterized patient-related factors. Objective: The aim of the study was to perform an assessment of factors that affect the usage and resignation from conservative methods in CVD self-management. Methods: A structured interview concerning self-management was carried out with 407 consecutive CVD patients of mean age 64.4 years (range: 23–87 years. All the patients had recently undergone Doppler examination and were classified in accordance with Clinical, Etiology, Anatomy, and Pathophysiology (CEAP classification. Results: Pharmacotherapy was the most frequently (85.0% of respondents used method in CVD self-management. Obese (odds ratio [OR] =1.75 [95% confidence interval {CI} 0.99–3.05] and subjects with longer duration of the disease (OR =1.74 [95% CI 1.16–2.62] were more likely to use venoactive drugs, while females used ointments commonly containing heparin (OR =1.82 [95% CI 1.08–3.03]. Compression therapy was perceived by respondents as the most difficult method in self-management (OR =2.50 [95% CI 1.61–3.88] and was also recognized as the most effective method of treatment (OR =13.9 [95% CI 7.35–26.4]. Longer duration of CVD (≥15 years increased (OR =1.78 [95% CI 1.16–2.71] while obesity decreased (OR =0.38 [95% CI 0.20–0.72] the utilization of compression therapy. Females were more likely to adhere to lifestyle changes than males (OR =1.68 [95% CI 0.97–2.90]. Physiotherapy was rarely

  1. Predicting Self-Management Behaviors in Familial Hypercholesterolemia Using an Integrated Theoretical Model: the Impact of Beliefs About Illnesses and Beliefs About Behaviors.

    Science.gov (United States)

    Hagger, Martin S; Hardcastle, Sarah J; Hingley, Catherine; Strickland, Ella; Pang, Jing; Watts, Gerald F

    2016-06-01

    Patients with familial hypercholesterolemia (FH) are at markedly increased risk of coronary artery disease. Regular participation in three self-management behaviors, physical activity, healthy eating, and adherence to medication, can significantly reduce this risk in FH patients. We aimed to predict intentions to engage in these self-management behaviors in FH patients using a multi-theory, integrated model that makes the distinction between beliefs about illness and beliefs about self-management behaviors. Using a cross-sectional, correlational design, patients (N = 110) diagnosed with FH from a clinic in Perth, Western Australia, self-completed a questionnaire that measured constructs from three health behavior theories: the common sense model of illness representations (serious consequences, timeline, personal control, treatment control, illness coherence, emotional representations); theory of planned behavior (attitudes, subjective norms, perceived behavioral control); and social cognitive theory (self-efficacy). Structural equation models for each self-management behavior revealed consistent and statistically significant effects of attitudes on intentions across the three behaviors. Subjective norms predicted intentions for health eating only and self-efficacy predicted intentions for physical activity only. There were no effects for the perceived behavioral control and common sense model constructs in any model. Attitudes feature prominently in determining intentions to engage in self-management behaviors in FH patients. The prominence of these attitudinal beliefs about self-management behaviors, as opposed to illness beliefs, suggest that addressing these beliefs may be a priority in the management of FH.

  2. A chronic care ostomy self-management program for cancer survivors.

    Science.gov (United States)

    Krouse, Robert S; Grant, Marcia; McCorkle, Ruth; Wendel, Christopher S; Cobb, Martha D; Tallman, Nancy J; Ercolano, Elizabeth; Sun, Virginia; Hibbard, Judith H; Hornbrook, Mark C

    2016-05-01

    Individuals with ostomies experience extensive changes in health-related quality of life (HRQOL) and daily routine. Patients and families are typically forced to use trial and error to improve self-management. This is a longitudinal one-group design pilot study of a five-session ostomy self-care curriculum based on the Chronic Care Model to improve HRQOL and self-management for cancer survivors with ostomies. Participants were surveyed to evaluate each session. Multiple instruments were administered to examine outcomes at baseline, post-intervention, and at 6-month follow-up (Patient Activation Measure, self-efficacy, Hospital Anxiety and Depression Scale, Ways of Coping, Group Health Association of America Satisfaction with ostomy care survey, and the City of Hope Quality of Life Ostomy). Changes from pre-intervention to post-intervention and pre-intervention to follow-up were evaluated with paired t-tests. Text responses were coded and evaluated for important themes and recommendations. Thirty-eight subjects participated in the study. Most had a history of rectal cancer (60.5%) or bladder cancer (28.9%). Participants rated the overall program high (4.4-4.8 on 5-point scale). Text feedback indicated that participants enjoyed the group forums, wanted more participants, and more hands-on training. Scores on multiple surveys were shown to be improved and sustained, including patient activation (p = 0.0004), self-efficacy (p = 0.006), total HRQOL (p = 0.01), physical well-being (p = 0.005), and social well-being (p = 0.002). Survivor anxiety was significantly reduced by follow-up (p = 0.047). This self-management ostomy program can help cancer survivors with ostomies adapt to their stoma. Initiating this program in the community setting would be beneficial to many cancer survivors. Copyright © 2016 John Wiley & Sons, Ltd.

  3. Chronic condition self-management surveillance: what is and what should be measured?

    Science.gov (United States)

    Ruiz, Sarah; Brady, Teresa J; Glasgow, Russell E; Birkel, Richard; Spafford, Michelle

    2014-06-19

    The rapid growth in chronic disease prevalence, in particular the prevalence of multiple chronic conditions, poses a significant and increasing burden on the health of Americans. Maximizing the use of proven self-management (SM) strategies is a core goal of the US Department of Health and Human Services. Yet, there is no systematic way to assess how much SM or self-management support (SMS) is occurring in the United States. The purpose of this project was to identify appropriate concepts or measures to incorporate into national SM and SMS surveillance. A multistep process was used to identify candidate concepts, assess existing measures, and select high-priority concepts for further development. A stakeholder survey, an environmental scan, subject matter expert feedback, and a stakeholder priority-setting exercise were all used to select the high-priority concepts for development. The stakeholder survey gathered feedback on 32 candidate concepts; 9 concepts were endorsed by more than 66% of respondents. The environmental scan indicated few existing measures that adequately reflected the candidate concepts, and those that were identified were generally specific to a defined condition and not gathered on a population basis. On the basis of the priority setting exercises and environmental scan, we selected 1 concept from each of 5 levels of behavioral influence for immediate development as an SM or SMS indicator. The absence of any available measures to assess SM or SMS across the population highlights the need to develop chronic condition SM surveillance that uses national surveys and other data sources to measure national progress in SM and SMS.

  4. 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.

  5. Improving Chronic Disease Self-Management by Older Home Health Patients through Community Health Coaching

    Directory of Open Access Journals (Sweden)

    Cheryl Dye

    2018-04-01

    Full Text Available The purpose of the study was to pilot test a model to reduce hospital readmissions and emergency department use of rural, older adults with chronic diseases discharged from home health services (HHS through the use of volunteers. The study’s priority population consistently experiences poorer health outcomes than their urban counterparts due in part to lower socioeconomic status, reduced access to health services, and incidence of chronic diseases. When they are hospitalized for complications due to poorly managed chronic diseases, they are frequently readmitted for the same conditions. This pilot study examines the use of volunteer community members who were trained as Health Coaches to mentor discharged HHS patients in following the self-care plan developed by their HHS RN; improving chronic disease self-management behaviors; reducing risk of falls, pneumonia, and flu; and accessing community resources. Program participants increased their ability to monitor and track their chronic health conditions, make positive lifestyle changes, and reduce incidents of falls, pneumonia and flu. Although differences in the ED and hospital admission rates after discharge from HHS between the treatment and comparison group (matched for gender, age, and chronic condition were not statistically significant, the treatment group’s rate was less than the comparison group thus suggesting a promising impact of the HC program (90 day: 263 comparison vs. 129 treatment; p = 0.65; 180 day 666.67 vs. 290.32; p = 0.19. The community health coach model offers a potential approach for improving the ability of discharged older home health patients to manage chronic conditions and ultimately reduce emergent care.

  6. Using intervention mapping (IM to develop a self-management programme for employees with a chronic disease in the Netherlands

    Directory of Open Access Journals (Sweden)

    Heerkens Yvonne F

    2010-06-01

    Full Text Available Abstract Background Employees with a chronic disease often encounter problems at work because of their chronic disease. The current paper describes the development of a self-management programme based on the Chronic Disease Self-Management programme (CDSMP of Stanford University to help employees with a chronic somatic disease cope with these problems at work. The objective of this article is to present the systematic development and content of this programme. Methods The method of intervention mapping (Bartholomew 2006 was used to tailor the original CDSMP for employees with a chronic somatic disease. This paper describes the process of adjusting the CDSMP for this target group. A needs assessment has been carried out by a literature review and qualitative focus groups with employees with a chronic disease and involved health professionals. On the basis of the needs assessment, the relevant determinants of self-management behaviour at work have been identified for the target population and the objectives of the training have been formulated. Furthermore, techniques have been chosen to influence self-management and the determinants of behaviour and a programme plan has been developed. Results The intervention was designed to address general personal factors such as lifestyle, disease-related factors (for example coping with the disease and work-related personal factors (such as self-efficacy at work. The course consists of six sessions of each two and a half hour and intents to increase the self management and empowerment of employees with a chronic somatic disease. Conclusion Intervention mapping has been found to be a useful tool for tailoring in a systematic way the original CDSMP for employees with a chronic somatic disease. It might be valuable to use IM for the development or adjusting of interventions in occupational health care.

  7. Enhancing patient engagement in chronic disease self-management support initiatives in Australia: the need for an integrated approach.

    Science.gov (United States)

    Jordan, Joanne E; Briggs, Andrew M; Brand, Caroline A; Osborne, Richard H

    2008-11-17

    Although emphasis on the prevention of chronic disease is important, governments in Australia need to balance this with continued assistance to the 77% of Australians reported to have at least one long-term medical condition. Self-management support is provided by health care and community services to enhance patients' ability to care for their chronic conditions in a cooperative framework. In Australia, there is a range of self-management support initiatives that have targeted patients (most notably, chronic disease self-management education programs) and health professionals (financial incentives, education and training). To date, there has been little coordination or integration of these self-management initiatives to enhance the patient-health professional clinical encounter. If self-management support is to work, there is a need to better understand the infrastructure, systems and training that are required to engage the key stakeholders - patients, carers, health professionals, and health care organisations. A coordinated approach is required in implementing these elements within existing and new health service models to enhance uptake and sustainability.

  8. Supporting chronic disease self-management: translating policies and principles into clinical practice.

    Science.gov (United States)

    Higgins, Rosemary; Murphy, Barbara; Worcester, Marian; Daffey, Angela

    2012-01-01

    To support self-management, health professionals need to adopt a client-centred approach and learn to deliver evidence-based behaviour change interventions. This paper reports on the evaluation of 1- and 2-day training programs developed to improve health professionals' capacity to support chronic disease self-management (CDSM). The 321 participants attended one of eighteen supporting CDSM courses held in urban and rural settings. Participants included nurses, allied health professionals, Aboriginal health workers and general practitioners. Data were collected at three time points: before participation; immediately after the training; and, for a sub-sample of 37 participants, 2 months after the training. Results revealed a significant and sustained increase in CDSM self-efficacy following training regardless of participants' gender, age or qualifications. A thematic analysis of the responses concerning intended practice revealed four main areas of intended practice change, namely: use behavioural strategies; improve communication with clients; adopt a client-centred approach; and improve goal setting. The number of practice changes at 2 months reported by a sub-sample of participants ranged from 1 to 20 with a mean of 14 (s.d.=4). The three most common areas of practice change point to the adoption by health professionals of a collaborative approach with chronic disease patients. Lack of staff trained in CDSM was seen as a major barrier to practice change, with lack of support and finance also named as barriers to practice change. Participants identified that increased training, support and awareness of the principles of supporting CDSM would help to overcome barriers to practice change. These results indicate a readiness among health professionals to adopt a more collaborative approach given the skills and the tools to put this approach into practice.

  9. Computer and mobile technology interventions for self-management in chronic obstructive pulmonary disease.

    Science.gov (United States)

    McCabe, Catherine; McCann, Margaret; Brady, Anne Marie

    2017-05-23

    Chronic obstructive pulmonary disease (COPD) is characterised by airflow obstruction due to an abnormal inflammatory response of the lungs to noxious particles or gases, for example, cigarette smoke. The pattern of care for people with moderate to very severe COPD often involves regular lengthy hospital admissions, which result in high healthcare costs and an undesirable effect on quality of life. Research over the past decade has focused on innovative methods for developing enabling and assistive technologies that facilitate patient self-management. To evaluate the effectiveness of interventions delivered by computer and by mobile technology versus face-to-face or hard copy/digital documentary-delivered interventions, or both, in facilitating, supporting, and sustaining self-management among people with COPD. In November 2016, we searched the Cochrane Airways Group Specialised Register (CAGR), which contains trial reports identified through systematic searches of bibliographic databases including the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, Embase, CINAHL, AMED, and PsycINFO, and we handsearched respiratory journals and meeting abstracts. We included randomised controlled trials that measured effects of remote and Web 2.0-based interventions defined as technologies including personal computers (PCs) and applications (apps) for mobile technology, such as iPad, Android tablets, smart phones, and Skype, on behavioural change towards self-management of COPD. Comparator interventions included face-to-face and/or hard copy/digital documentary educational/self-management support. Two review authors (CMcC and MMcC) independently screened titles, abstracts, and full-text study reports for inclusion. Two review authors (CMcC and AMB) independently assessed study quality and extracted data. We expressed continuous data as mean differences (MDs) and standardised mean differences (SMDs) for studies using different outcome measurement scales. We

  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. Development and Validation of an Online Program for Promoting Self-Management among Korean Patients with Chronic Hepatitis B

    Directory of Open Access Journals (Sweden)

    Jinhyang Yang

    2013-01-01

    Full Text Available The hepatitis B virus is second only to tobacco as a known human carcinogen. However, chronic hepatitis B usually does not produce symptoms and people feel healthy even in the early stages of live cancer. Therefore, chronically infected people should perceive it as a serious health problem and move on to appropriate health behaviour. The purpose of this paper is to develop and validate an online program for promoting self-management among Korean patients with chronic hepatitis B. The online program was developed using a prototyping approach and system developing life cycle method, evaluated by users for their satisfaction with the website and experts for the quality of the site. To evaluate the application of the online program, knowledge and self-management compliance of the subjects were measured and compared before and after the application of the online program. There were statistically significant increases in knowledge and self-management compliance in the user group. An online program with high accessibility and applicability including information, motivation, and behavior skill factors can promote self-management of the patient with chronic hepatitis B. Findings from this study allow Korean patients with chronic hepatitis B to engage in proactive and effective health management in the community or clinical practice.

  12. Mobile applications for chronic disease self-management : building a bridge for behavior change

    Directory of Open Access Journals (Sweden)

    Aija Lähdesmäki

    2015-10-01

    Full Text Available Background One of the biggest challenges in the future of healthcare is the rising prevalence of chronic, non-communicable diseases. In high-income countries seven out of ten leading risk factors of death are caused by the way people eat, drink or move. Health behavior patterns are considered to account for 40 % of early mortality. If nothing changes, from 2011 until 2030 the cost of chronic disease in the whole world may reach 47 trillion dollars. It is clear that chronic disease care needs to change. Today people with chronic disease spend less than 0,1 % of their time yearly in direct contact with healthcare and guidance. The rest of the time they are under the influence of family, colleagues, acquaintances, media and all the conflicting information from them. Digital elements are emerging in healthcare. Some of these digital elements emerging are mobile applications. Of all the people in Finland, 70 % own a smartphone. These devices are often in the proximity of their owner; in a pocket or a purse, making them easy and fast to use for various purposes. This is why they can also prove to be useful tools for personal healthcare and chronic disease self-management support, for example for recording diet and exercise related values as well as various disease specific values like blood glucose or blood pressure measurements. They also enable two-way interaction with healthcare professionals and patients in their everyday life. This requires well designed applications that affect the patient’s health behavior and are tempting to use. According to research, this is not always the case. Aim The aim of this thesis study was to find out how multipurpose mobile applications intended for chronic disease self-management implement known behavior change techniques in order to change behavior, and to find out how they utilize known gamification features in order to maintain the change. The purpose of this study was to create a new, multidisciplinary

  13. The Perceived Medical Condition Self-Management Scale can be applied to patients with chronic kidney disease.

    Science.gov (United States)

    Wild, Marcus G; Wallston, Kenneth A; Green, Jamie A; Beach, Lauren B; Umeukeje, Ebele; Wright Nunes, Julie A; Ikizler, T Alp; Steed, Julia; Cavanaugh, Kerri L

    2017-10-01

    Chronic Kidney Disease (CKD) is a major burden on patients and the health care system. Treatment of CKD requires dedicated involvement from both caretakers and patients. Self-efficacy, also known as perceived competence, contributes to successful maintenance of patient's CKD self-management behaviors such as medication adherence and dietary regulations. Despite a clear association between self-efficacy and improved CKD outcomes, there remains a lack of validated self-report measures of CKD self-efficacy. To address this gap, the Perceived Kidney/Dialysis Self-Management Scale (PKDSMS) was adapted from the previously validated Perceived Medical Condition Self-Management Scale. We then sought to validate this using data from two separate cohorts: a cross-sectional investigation of 146 patients with end-stage renal disease receiving maintenance hemodialysis and a longitudinal study of 237 patients with CKD not receiving dialysis. The PKDSMS was found to be positively and significantly correlated with self-management behaviors and medication adherence in both patient cohorts. The PKDSMS had acceptable reliability, was internally consistent, and exhibited predictive validity between baseline PKDSMS scores and self-management behaviors across multiple time points. Thus, the PKDSMS is a valid and reliable measure of CKD patient self-efficacy and supports the development of interventions enhancing perceived competence to improve CKD self-management. Copyright © 2017 International Society of Nephrology. Published by Elsevier Inc. All rights reserved.

  14. Multimodal, integrative therapies for the self-management of chronic pain symptoms.

    Science.gov (United States)

    Lee, Courtney; Crawford, Cindy; Swann, Steven

    2014-04-01

    Chronic pain management typically consists of prescription medications or provider-based, behavioral, or interventional procedures which are often ineffective, may be costly, and can be associated with undesirable side effects. Because chronic pain affects the whole person (body, mind, and spirit), patient-centered complementary and integrative medicine (CIM) therapies that acknowledge the patients' roles in their own healing processes have the potential to provide more efficient and comprehensive chronic pain management. Active self-care CIM therapies (ACT-CIM) allow for a more diverse, patient-centered treatment of complex symptoms, promote self-management, and are relatively safe and cost-effective. To date, there are no systematic reviews examining the full range of ACT-CIM used for chronic pain symptom management. A systematic review was conducted, using Samueli Institute's rapid evidence assessment of the literature methodology, to rigorously assess both the quality of the research on ACT-CIM modalities and the evidence for their efficacy and effectiveness in treating chronic pain symptoms. A working group of subject matter experts was also convened to evaluate the overall literature pool and develop recommendations for the use and implementation of these modalities. Following key database searches, 146 randomized controlled trials were included in the review, 26 of which investigated multimodal, integrative therapies, as defined by the authors. This article summarizes the current evidence, quality, and effectiveness of these modalities. Recommendations and next steps to move this field of research forward are also discussed. The entire scope of the review is detailed throughout the current Pain Medicine supplement. Wiley Periodicals, Inc.

  15. Sensory art therapies for the self-management of chronic pain symptoms.

    Science.gov (United States)

    Crawford, Cindy; Lee, Courtney; Bingham, John

    2014-04-01

    Chronic pain management typically consists of prescription medications or provider-based, behavioral, or interventional procedures which are often ineffective, may be costly, and can be associated with undesirable side effects. Because chronic pain affects the whole person (body, mind, and spirit), patient-centered complementary and integrative medicine (CIM) therapies that acknowledge the patients' roles in their own healing processes have the potential to provide more efficient and comprehensive chronic pain management. Active self-care CIM therapies (ACT-CIM) allow for a more diverse, patient-centered treatment of complex symptoms, promote self-management, and are relatively safe and cost-effective. To date, there are no systematic reviews examining the full range of ACT-CIM used for chronic pain symptom management. A systematic review was conducted, using Samueli Institute's rapid evidence assessment of the literature methodology, to rigorously assess both the quality of the research on ACT-CIM modalities and the evidence for their efficacy and effectiveness in treating chronic pain symptoms. A working group of subject matter experts was also convened to evaluate the overall literature pool and develop recommendations for the use and implementation of these modalities. Following key database searches, 146 randomized controlled trials were included in the review, eight of which investigated sensory art therapies, as defined by the authors. This article summarizes the current evidence, quality, efficacy, and safety of these modalities. Recommendations and next steps to move this field of research forward are also discussed. The entire scope of the review is detailed throughout the current Pain Medicine supplement. Wiley Periodicals, Inc.

  16. Physically oriented therapies for the self-management of chronic pain symptoms.

    Science.gov (United States)

    Crawford, Cindy; Lee, Courtney; May, Todd

    2014-04-01

    Chronic pain management typically consists of prescription medications or provider-based, behavioral, or interventional procedures that are often ineffective, may be costly, and can be associated with undesirable side effects. Because chronic pain affects the whole person (body, mind, and spirit), patient-centered complementary and integrative medicine (CIM) therapies that acknowledge the patients' roles in their own healing processes have the potential to provide more efficient and comprehensive chronic pain management. Active self-care CIM (ACT-CIM) therapies allow for a more diverse, patient-centered treatment of complex symptoms, promote self-management, and are relatively safe and cost-effective. To date, there are no systematic reviews examining the full range of ACT-CIM used for chronic pain symptom management. A systematic review was conducted, using Samueli Institute's Rapid Evidence Assessment of the Literature methodology, to rigorously assess both the quality of the research on ACT-CIM modalities and the evidence for their efficacy and effectiveness in treating chronic pain symptoms. A working group of subject matter experts was also convened to evaluate the overall literature pool and develop recommendations for the use and implementation of these modalities. Following key database searches, 146 randomized controlled trials were included in the review, 10 of which investigated physically oriented therapies, as defined by the authors. This article summarizes the current evidence, quality, efficacy, and safety of these modalities. Recommendations and next steps to move this field of research forward are also discussed. The entire scope of the review is detailed throughout the current Pain Medicine supplement. Wiley Periodicals, Inc.

  17. Movement therapies for the self-management of chronic pain symptoms.

    Science.gov (United States)

    Lee, Courtney; Crawford, Cindy; Schoomaker, Eric

    2014-04-01

    Chronic pain management typically consists of prescription medications or provider-based, behavioral, or interventional procedures which are often ineffective, may be costly, and can be associated with undesirable side effects. Because chronic pain affects the whole person (body, mind, and spirit), patient-centered complementary and integrative medicine (CIM) therapies that acknowledge the patients' roles in their own healing processes have the potential to provide more efficient and comprehensive chronic pain management. Active self-care CIM therapies (ACT-CIM) allow for a more diverse, patient-centered treatment of complex symptoms, promote self-management, and are relatively safe and cost-effective. To date, there are no systematic reviews examining the full range of ACT-CIM used for chronic pain symptom management. A systematic review was conducted, using Samueli Institute's rapid evidence assessment of the literature methodology, to rigorously assess both the quality of the research on ACT-CIM modalities and the evidence for their efficacy and effectiveness in treating chronic pain symptoms. A working group of subject matter experts was also convened to evaluate the overall literature pool and develop recommendations for the use and implementation of these modalities. Following key database searches, 146 randomized controlled trials were included in the review, 30 of which investigated movement therapies, as defined by the authors. This article summarizes the current evidence, quality, efficacy, and safety of these modalities. Recommendations and next steps to move this field of research forward are also discussed. The entire scope of the review is detailed throughout the current Pain Medicine supplement. Wiley Periodicals, Inc.

  18. Mind-body therapies for the self-management of chronic pain symptoms.

    Science.gov (United States)

    Lee, Courtney; Crawford, Cindy; Hickey, Anita

    2014-04-01

    Chronic pain management typically consists of prescription medications or provider-based, behavioral, or interventional procedures which are often ineffective, may be costly, and can be associated with undesirable side effects. Because chronic pain affects the whole person (body, mind, and spirit), patient-centered complementary and integrative medicine (CIM) therapies that acknowledge the patients' roles in their own healing processes have the potential to provide more efficient and comprehensive chronic pain management. Active self-care complementary and integrative medicine (ACT-CIM) therapies allow for a more diverse, patient-centered treatment of complex symptoms, promote self-management, and are relatively safe and cost-effective. To date, there are no systematic reviews examining the full range of ACT-CIM used for chronic pain symptom management. A systematic review was conducted, using Samueli Institute's rapid evidence assessment of the literature (REAL©) methodology, to rigorously assess both the quality of the research on ACT-CIM modalities and the evidence for their efficacy and effectiveness in treating chronic pain symptoms. A panel of subject matter experts was also convened to evaluate the overall literature pool and develop recommendations for the use and implementation of these modalities. Following key database searches, 146 randomized controlled trials were included in the review, 54 of which investigated mind-body therapies, as defined by the authors. This article summarizes the current evidence, quality, efficacy, and safety of these modalities. Recommendations and next steps to move this field of research forward are also discussed. The entire scope of the review is detailed throughout the current Pain Medicine supplement. Wiley Periodicals, Inc.

  19. Functional, communicative and critical health literacy of chronic disease patients and their importance for self-management.

    NARCIS (Netherlands)

    Heijmans, M.; Waverijn, G.; Rademakers, J.; Vaart, R. van der; Rijken, M.

    2015-01-01

    Objective: To provide insight into the level of health literacy among chronic disease patients in the Netherlands, to identify subgroups with low literacy and to examine the associations between health literacy and self-management. Methods: Self-report questionnaires were sent to a nationwide sample

  20. Advancing the Science of Behavioral Self-Management of Chronic Disease: The Arc of a Research Trajectory

    Science.gov (United States)

    Allegrante, John P.

    2018-01-01

    This article describes advances in the behavioral self-management of chronic disease from the perspective of a 25-year trajectory of National Institute of Health-funded research in arthritis and cardiopulmonary diseases that has sought to develop a transdisciplinary understanding of how applied behavioral science can be used to improve health…

  1. Self-management interventions including action plans for exacerbations versus usual care in patients with chronic obstructive pulmonary disease (Review)

    NARCIS (Netherlands)

    Lenferink, Anke; Brusse-Keizer, Marjolein; van der Valk, Paul; Frith, Peter A.; Zwerink, Marlies; Monninkhof, Evelyn M.; van der Palen, J.A.M.; Effing, Tanja

    2017-01-01

    Background  Chronic Obstructive Pulmonary Disease (COPD) self-management interventions should be structured but personalised and often multi-component, with goals ofmotivating, engaging and supporting the patients to positively adapt their behaviour(s) and develop skills to better manage disease.

  2. Self-management interventions including action plans for exacerbations versus usual care in patients with chronic obstructive pulmonary disease

    NARCIS (Netherlands)

    Lenferink, Anke; Brusse-Keizer, Marjolein; van der Valk, Paul D.L.P.M.; Frith, Peter A.; Zwerink, Marlies; Monninkhof, Evelyn M.; van der Palen, Job; Effing-Tijdhof, Tanja W

    2017-01-01

    Background: Chronic Obstructive Pulmonary Disease (COPD) self-management interventions should be structured but personalised and often multi-component, with goals of motivating, engaging and supporting the patients to positively adapt their behaviour(s) and develop skills to better manage disease.

  3. Using an electronic self-management tool to support patients with chronic kidney disease (CKD): a CKD clinic self-care model.

    Science.gov (United States)

    Ong, Stephanie W; Jassal, Sarbjit V; Porter, Eveline; Logan, Alexander G; Miller, Judith A

    2013-01-01

    New healthcare delivery models are needed to enhance the patient experience and improve quality of care for individuals with chronic conditions such as kidney disease. One potential avenue is to implement self-management strategies. There is growing evidence that self-management interventions help optimize various aspects of chronic disease management. With the increasing use of information technology (IT) in health care, chronic disease management programs are incorporating IT solutions to support patient self-management practices. IT solutions have the ability to promote key principles of self-management, namely education, empowerment, and collaboration. Positive clinical outcomes have been demonstrated for a number of chronic conditions when IT solutions were incorporated into self-management programs. There is a paucity of evidence for self-management in chronic kidney disease (CKD) patients. Furthermore, IT strategies have not been tested in this patient population to the same extent as other chronic conditions (e.g., diabetes, hypertension). Therefore, it is currently unknown if IT strategies will promote self-management behaviors and lead to improvements in overall patient care. We designed and developed an IT solution called My KidneyCare Centre to support self-management strategies for patients with CKD. In this review, we discuss the rationale and vision of incorporating an electronic self-management tool to support the care of patients with CKD. © 2013 Wiley Periodicals, Inc.

  4. Is Europe putting theory into practice? A qualitative study of the level of self-management support in chronic care management approaches

    NARCIS (Netherlands)

    Elissen, A.M.J.; Nolte, E.; Knai, C.; Brunn, M.; Chevreul, K.; Conklin, A.; Durand-Zaleski, I.; Erler, A.; Flamm, M.; Frølich, A.; Fullerton, B.; Jacobsen, R.; Saz-Parkinson, Z.; Sarria-Santamera, A.; Sönnichsen, A.; Vrijhoef, H.J.M.

    2013-01-01

    Background Self-management support is a key component of effective chronic care management, yet in practice appears to be the least implemented and most challenging. This study explores whether and how self-management support is integrated into chronic care approaches in 13 European countries. In

  5. Self-management support for chronic pain in primary care: a cross-sectional study of patient experiences and nursing roles.

    Science.gov (United States)

    Lukewich, Julia; Mann, Elizabeth; VanDenKerkhof, Elizabeth; Tranmer, Joan

    2015-11-01

    The aim of this study was to describe chronic pain self-management from the perspective of individuals living with chronic pain in the context of primary care nursing. Self-management is a key chronic pain treatment modality and support for self-managing chronic pain is mainly provided in the context of primary care. Although nurses are optimally suited to facilitate self-management in primary care, there is a need to explore opportunities for optimizing their roles. Two cross-sectional studies. The Chronic Pain Self-Management Survey was conducted in 2011-2012 to explore the epidemiology and self-management of chronic pain in Canadian adults. The questionnaire was distributed to 1504 individuals in Ontario. In 2011, the Primary Care Nursing Roles Survey was distributed to 1911 primary care nurses in Ontario to explore their roles and to determine the extent to which chronic disease management strategies, including support for self-management, were implemented in primary care. Few respondents to the pain survey identified nurses as being the 'most helpful' facilitator of self-management while physicians were most commonly cited. Seventy-six per cent of respondents used medication to manage their chronic pain. Few respondents to the nursing survey worked in practices with specific programmes for individuals with chronic pain. Individuals with chronic pain identified barriers and facilitators to self-managing their pain and nurses identified barriers and facilitators to optimizing their role in primary care. There are several opportunities for primary care practices to facilitate self-management of chronic pain, including the optimization of the primary care nursing role. © 2015 John Wiley & Sons Ltd.

  6. Activity Pacing Self-Management in Chronic Fatigue Syndrome: A Randomized Controlled Trial

    Science.gov (United States)

    van Eupen, Inge; Meirte, Jill; Van Cauwenbergh, Deborah; Moorkens, Greta; Meeus, Mira; Nijs, Jo

    2015-01-01

    OBJECTIVE. The objective of this study was to evaluate the effectiveness of an activity pacing self-management (APSM) intervention in improving performance of daily life activities in women with chronic fatigue syndrome (CFS). METHOD. A total of 33 women with CFS (age 41.1 ± 11.2 yr) were randomly allocated to APSM (experimental group; n = 16) or relaxation (control group; n = 17). Main outcome measures included the Canadian Occupational Performance Measure (COPM; primary) and Checklist Individual Strength (CIS). RESULTS. COPM scores changed significantly over time in both groups (p = .03). The change in Satisfaction scores showed a significant difference in favor only of APSM (effect size = 0.74 [0.11, 1.4]). CIS scores decreased significantly in the experimental group only (p < .01). CONCLUSION. APSM was found to be feasible and effective in optimizing participation in desired daily life activities in women with CFS. Replication in a larger sample with long-term follow-up is required. PMID:26356665

  7. Activity Pacing Self-Management in Chronic Fatigue Syndrome: A Randomized Controlled Trial.

    Science.gov (United States)

    Kos, Daphne; van Eupen, Inge; Meirte, Jill; Van Cauwenbergh, Deborah; Moorkens, Greta; Meeus, Mira; Nijs, Jo

    2015-01-01

    To evaluate the effectiveness of an activity pacing self-management (APSM) intervention in improving performance of daily life activities in women with chronic fatigue syndrome (CFS). A total of 33 women with CFS (age 41.1±11.2 yr) were randomly allocated to APSM (experimental group; n=16) or relaxation (control group; n=17). Main outcome measures included the Canadian Occupational Performance Measure (COPM; primary) and Checklist Individual Strength (CIS). COPM scores changed significantly over time in both groups (p=.03). The change in Satisfaction scores showed a significant difference in favor only of APSM (effect size=0.74 [0.11, 1.4]). CIS scores decreased significantly in the experimental group only (p<.01). APSM was found to be feasible and effective in optimizing participation in desired daily life activities in women with CFS. Replication in a larger sample with long-term follow-up is required. Copyright © 2015 by the American Occupational Therapy Association, Inc.

  8. Self-management programs based on the social cognitive theory for Koreans with chronic disease: a systematic review.

    Science.gov (United States)

    Jang, Yeonsoo; Yoo, Hyera

    2012-02-01

    Self-management programs based on social cognitive theory are useful to improve health care outcomes for patients with chronic diseases in Western culture. The purpose of this review is to identify and synthesize published research on the theory to enhance self-efficacy in disease management and examine its applicability to Korean culture regarding the learning strategies used. Ultimately, it was to identify the optimal use of these learning strategies to improve the self-efficacy of Korean patients in self-management of their hypertension and diabetic mellitus. The authors searched the Korean and international research databases from January 2000 to September 2009. Twenty studies were selected and reviewed. The most frequently used learning strategies of social cognitive theory was skill mastery by practice and feedback (N = 13), followed by social or verbal persuasion by group members (N = 7) and, however, observation learning and reinterpretation of symptoms by debriefing or discussion were not used any of the studies. Eight studies used only one strategy to enhance self-efficacy and six used two. A lack of consistency regarding the content and clinical efficacy of the self-efficacy theory-based self-management programs is found among the reviewed studies on enhancing self-efficacy in Koreans with hypertension and diabetes mellitus. Further research on the effectiveness of these theory-based self-management programs for patients with chronic diseases in Korea and other countries is recommended.

  9. Economic evaluation of chronic disease self-management for people with diabetes: a systematic review.

    Science.gov (United States)

    Teljeur, C; Moran, P S; Walshe, S; Smith, S M; Cianci, F; Murphy, L; Harrington, P; Ryan, M

    2017-08-01

    To systematically review the evidence on the costs and cost-effectiveness of self-management support interventions for people with diabetes. Self-management support is the provision of education and supportive interventions to increase patients' skills and confidence in managing their health problems, potentially leading to improvements in HbA 1c levels in people with diabetes. Randomized controlled trials, observational studies or economic modelling studies were eligible for inclusion in the review. The target population was adults with diabetes. Interventions had to have a substantial component of self-management support and be compared with routine care. Study quality was evaluated using the Consensus on Health Economic Criteria and International Society of Pharmacoeconomic Outcomes Research questionnaires. A narrative review approach was used. A total of 16 costing and 21 cost-effectiveness studies of a range of self-management support interventions were identified. There was reasonably consistent evidence across 22 studies evaluating education self-management support programmes suggesting these interventions are cost-effective or superior to usual care. Telemedicine-type interventions were more expensive than usual care and potentially not cost-effective. There was insufficient evidence regarding the other types of self-management interventions, including pharmacist-led and behavioural interventions. The identified studies were predominantly of poor quality, with outcomes based on short-term follow-up data and study designs at high risk of bias. Self-management support education programmes may be cost-effective. There was limited evidence regarding other formats of self-management support interventions. The poor quality of many of the studies undermines the evidence base regarding the economic efficiency of self-management support interventions for people with diabetes. © 2016 Diabetes UK.

  10. Tale of Two Courthouses: A Critique of the Underlying Assumptions in Chronic Disease Self-Management for Aboriginal People

    Directory of Open Access Journals (Sweden)

    Isabelle Ellis

    2009-12-01

    Full Text Available This article reviews the assumptions that underpin thecommonly implemented Chronic Disease Self-Managementmodels. Namely that there are a clear set of instructions forpatients to comply with, that all health care providers agreewith; and that the health care provider and the patient agreewith the chronic disease self-management plan that wasdeveloped as part of a consultation. These assumptions areevaluated for their validity in the remote health care context,particularly for Aboriginal people. These assumptions havebeen found to lack validity in this context, therefore analternative model to enhance chronic disease care isproposed.

  11. 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...

  12. The impact of cognitive impairment on self-management in chronic obstructive pulmonary disease: A systematic review.

    Science.gov (United States)

    Baird, Chelsea; Lovell, Janaka; Johnson, Marilyn; Shiell, Kerrie; Ibrahim, Joseph E

    2017-08-01

    To determine the characteristics of persons with cognitive impairment being able to self-manage in chronic obstructive pulmonary disease (COPD). In accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidance this systematic review examined all studies in English from 1st January 2000 to 20 February 2016, describing the relationship between cognition and COPD self-management domains in older community dwelling persons with dementia or cognitive impairment. Of 4474 studies identified, thirteen studies were eligible for inclusion. No studies differentiated populations into recognized dementia subtypes. Study aims were variable; most (n = 7) examined inhaler competency alone. Studies identified a link between worsening cognition and the need for assistance in activities of daily living. Only one study evaluated the impact of cognition on overall self-management and found no association between cognitive impairment and self-rated self-management. Mild degrees of cognitive impairment were associated with reduced symptom recall. Cognitive impairment in COPD was associated with high degrees of inhaler incompetency. Basic cognitive screening tests were able to predict inhaler incompetence with reduced overall cognitive function, dyspraxia, and/or executive function identified as predictors of incompetency. Multiple measures of disability consistently demonstrated that cognitive impairment in COPD significantly increased the need for assistance in many aspects of daily living, treatment adherence, and effective self-management. Given the nature of neuropsychological deficits seen in COPD, dedicated screening tools are required. Future research should investigate the impact of cognitive dysfunction in COPD and identify how to support those that lack capacity to self-manage. Copyright © 2017 Elsevier Ltd. All rights reserved.

  13. Intermediate Outcomes of a Chronic Disease Self-Management Program for Spanish-Speaking Older Adults in South Florida, 2008–2010

    OpenAIRE

    Michael A. Melchior, PhD; Laura R. Seff, MBA; Elena Bastida, PhD; Ahmed N. Albatineh, PhD; Timothy F. Page, PhD; Richard C. Palmer, DrPH

    2013-01-01

    Introduction The prevalence and negative health effects of chronic diseases are disproportionately high among Hispanics, the largest minority group in the United States. Self-management of chronic conditions by older adults is a public health priority. The objective of this study was to examine 6-week differences in self-efficacy, time spent performing physical activity, and perceived social and role activities limitations for participants in a chronic disease self-management program for Span...

  14. Recruiting seniors with chronic low back pain for a randomized controlled trial of a self-management program.

    Science.gov (United States)

    Groupp, Elyse; Haas, Mitchell; Fairweather, Alisa; Ganger, Bonnie; Attwood, Michael

    2005-02-01

    To identify recruitment challenges and elucidate specific strategies that enabled recruitment of seniors for a randomized trial on low back pain comparing the Chronic Disease Self-management Program of the Stanford University to a 6-month wait-list control group. Recruitment for a randomized controlled trial. Community-based program offered at 12 locations. Community-dwelling seniors 60 years and older with chronic low back pain of mechanical origin. Passive recruitment strategies included advertisement in local and senior newspapers, in senior e-mail newsletters and listservs, in local community centers and businesses. Active strategies included meeting seniors at health fairs, lectures to the public and organizational meetings, and the help of trusted professionals in the community. A total of 100 white and 20 African American seniors were recruited. The program seemed to have the most appeal to white, middle-class older adults, educated through high school level. Advertisement failed to attract any participants to the program. Successful strategies included interaction with seniors at health fairs and lectures on health care, especially when the program was endorsed by a trusted community professional. Generating interest in the self-management program required keen communication skills because the idea of "self-management" was met with a myriad of responses, ranging from disinterest to disbelief. Generating interest also required active participation within the communities. Initial contacts had to be established with trusted professionals, whose endorsement enabled the project managers to present the concept of self-management to the seniors. More complex recruitment strategies were required for this study involving the self-management approach to back pain than for studies involving treatment.

  15. Changing practice to support self-management and recovery in mental illness: application of an implementation model.

    Science.gov (United States)

    Harris, Melanie; Jones, Phil; Heartfield, Marie; Allstrom, Mary; Hancock, Janette; Lawn, Sharon; Battersby, Malcolm

    2015-01-01

    Health services introducing practice changes need effective implementation methods. Within the setting of a community mental health service offering recovery-oriented psychosocial support for people with mental illness, we aimed to: (i) identify a well-founded implementation model; and (ii) assess its practical usefulness in introducing a new programme for recovery-oriented self-management support. We reviewed the literature to identify implementation models applicable to community mental health organisations, and that also had corresponding measurement tools. We used one of these models to inform organisational change strategies. The literature review showed few models with corresponding tools. The Promoting Action on Research Implementation in Health Services (PARIHS) model and the related Organisational Readiness to Change Assessment (ORCA) tool were used. The PARIHS proposes prerequisites for health service change and the ORCA measures the extent to which these prerequisites are present. Application of the ORCA at two time points during implementation of the new programme showed strategy-related gains for some prerequisites but not for others, reflecting observed implementation progress. Additional strategies to address target prerequisites could be drawn from the PARIHS model. The PARIHS model and ORCA tool have potential in designing and monitoring practice change strategies in community mental health organisations. Further practical use and testing of implementation models appears justified in overcoming barriers to change.

  16. Methods for streamlining intervention fidelity checklists: an example from the chronic disease self-management program.

    Science.gov (United States)

    Ahn, SangNam; Smith, Matthew Lee; Altpeter, Mary; Belza, Basia; Post, Lindsey; Ory, Marcia G

    2014-01-01

    Maintaining intervention fidelity should be part of any programmatic quality assurance (QA) plan and is often a licensure requirement. However, fidelity checklists designed by original program developers are often lengthy, which makes compliance difficult once programs become widely disseminated in the field. As a case example, we used Stanford's original Chronic Disease Self-Management Program (CDSMP) fidelity checklist of 157 items to demonstrate heuristic procedures for generating shorter fidelity checklists. Using an expert consensus approach, we sought feedback from active master trainers registered with the Stanford University Patient Education Research Center about which items were most essential to, and also feasible for, assessing fidelity. We conducted three sequential surveys and one expert group-teleconference call. Three versions of the fidelity checklist were created using different statistical and methodological criteria. In a final group-teleconference call with seven national experts, there was unanimous agreement that all three final versions (e.g., a 34-item version, a 20-item version, and a 12-item version) should be made available because the purpose and resources for administering a checklist might vary from one setting to another. This study highlights the methodology used to generate shorter versions of a fidelity checklist, which has potential to inform future QA efforts for this and other evidence-based programs (EBP) for older adults delivered in community settings. With CDSMP and other EBP, it is important to differentiate between program fidelity as mandated by program developers for licensure, and intervention fidelity tools for providing an "at-a-glance" snapshot of the level of compliance to selected program indicators.

  17. Self-management programs for Aboriginal and Torres Strait Islander Peoples with chronic conditions: A rapid review.

    Science.gov (United States)

    Moore, Ellie; Lawn, Sharon; Oster, Candice; Morello, Andrea

    2017-01-01

    Objectives Review the evidence for the effectiveness of chronic condition self-management programs applied to Aboriginal and Torres Strait Islander Peoples. Methods A rapid review methodology was followed to develop an evidence summary from peer-reviewed and grey literature. Results Only seven peer-reviewed studies were identified. The evidence indicated that group programs, particularly the Stanford Program, and structured individual chronic condition self-management programs were of good quality for Aboriginal and Torres Strait Islander Peoples, although these need to be integrated into practice in order to see the greatest benefits. The Flinders Program showed promise as a standardised program with content designed specifically with and for these populations. Numerous grey literature sources were identified, many using strong participatory approaches developed locally within Aboriginal and Torres Strait Islander Peoples. However, few of these programs have been subject to rigorous evaluation. Discussion Despite the significant focus on chronic condition self-management programs to help address the burden of disease for Aboriginal and Torres Strait Islander Peoples, few studies exist that have been properly evaluated. The Closing the Gap Principles developed by the Australian Institute of Health and Welfare offer important guidance for how to proceed to maximise engagement, cultural appropriateness and ownership of program initiatives.

  18. Usability Study of a Computer-Based Self-Management System for Older Adults with Chronic Diseases

    Science.gov (United States)

    Tao, Da

    2012-01-01

    Background Usability can influence patients’ acceptance and adoption of a health information technology. However, little research has been conducted to study the usability of a self-management health care system, especially one geared toward elderly patients. Objective This usability study evaluated a new computer-based self-management system interface for older adults with chronic diseases, using a paper prototype approach. Methods Fifty older adults with different chronic diseases participated. Two usability evaluation methods were involved: (1) a heuristics evaluation and (2) end-user testing with a think-aloud testing method, audio recording, videotaping, and interviewing. A set of usability metrics was employed to determine the overall system usability, including task incompletion rate, task completion time, frequency of error, frequency of help, satisfaction, perceived usefulness, and perceived ease of use. Interviews were used to elicit participants’ comments on the system design. The quantitative data were analyzed using descriptive statistics and the qualitative data were analyzed for content. Results The participants were able to perform the predesigned self-management tasks with the current system design and they expressed mostly positive responses about the perceived usability measures regarding the system interface. However, the heuristics evaluation, performance measures, and interviews revealed a number of usability problems related to system navigation, information search and interpretation, information presentation, and readability. Design recommendations for further system interface modifications were discussed. Conclusions This study verified the usability of the self-management system developed for older adults with chronic diseases. Also, we demonstrated that our usability evaluation approach could be used to quickly and effectively identify usability problems in a health care information system at an early stage of the system development

  19. Self-management in patients with diabetes and chronic kidney disease is associated with incremental benefit in HRQOL.

    Science.gov (United States)

    Zimbudzi, Edward; Lo, Clement; Ranasinha, Sanjeeva; Kerr, Peter G; Usherwood, Timothy; Cass, Alan; Fulcher, Gregory R; Zoungas, Sophia

    2017-02-01

    There is insufficient and inconsistent data regarding the association between diabetes self-management, the process of facilitating the knowledge, skill, and ability necessary for diabetes self-care, and health-related quality of life (HRQOL) in people with diabetes and moderate to severe chronic kidney disease (CKD). In a cross sectional study, participation in diabetes self-management assessed by the Summary of Diabetes Self-Care Activities (SDSCA) questionnaire and HRQOL was examined in 308 patients with diabetes and CKD (stages 3 to 5) recruited from outpatient diabetes and renal clinics of 4 public tertiary hospitals. Associations were examined by Pearson correlation coefficients and hierarchical multiple regression after controlling for potential confounders. An examination of trend across the levels of patient participation in self-management was assessed using a non-parametric test for trend. The median age and interquartile range (IQR) of patients were 68 and 14.8years, respectively with 59% of the population being over 65years old and 69.5% male. The median durations of diabetes and CKD were 18years (IQR-17) and 5years (IQR-8) respectively. General diet, exercise and medication taking were positively associated with at least one HRQOL subscale (all pdiabetes specific diet, blood sugar testing and foot checking were not. As levels of participation in self-management activities increased there was a graded increase in mean HRQOL scores across all subscales (p for trend diabetes and moderate to severe CKD, participation in diabetes self-management activities, particularly those focused on general diet, exercise and medication taking, was associated with higher HRQOL. Copyright © 2017 Elsevier Inc. All rights reserved.

  20. Applying principles of self-management to facilitate workers to return to or remain at work with a chronic musculoskeletal condition.

    Science.gov (United States)

    Johnston, Venerina; Jull, Gwendolen; Sheppard, Dianne M; Ellis, Niki

    2013-08-01

    It is incumbent on health care professionals to support patients with chronic musculoskeletal conditions to manage the impact of the condition on their life. Work is a positive health behaviour for which self-management skills are essential. In this paper, self-management is defined and the role of clinicians in promoting self-management for return to work is outlined with examples and tips on how the clinician can incorporate self-management into practice. The clinician is ideally placed to assist individuals with chronic musculoskeletal conditions manage to remain at work or return to work. This can be achieved through such activities as the promotion of the core self-management skills of problem-solving, decision making, resource utilisation, developing a cooperative partnership between clinician and patient and making an action plan. Copyright © 2013 Elsevier Ltd. All rights reserved.

  1. 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

  2. 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)

  3. Emotional Intelligence: A Novel Outcome Associated with Wellbeing and Self-Management in Chronic Obstructive Pulmonary Disease.

    Science.gov (United States)

    Benzo, Roberto P; Kirsch, Janae L; Dulohery, Megan M; Abascal-Bolado, Beatriz

    2016-01-01

    Individuals with chronic obstructive pulmonary disease (COPD) often struggle with diminished autonomy and quality of life. Emotional factors play a crucial role in the well-being of patients with COPD; they are independently associated with critical outcomes such as dyspnea, quality of life, and health care use. Emotional intelligence is the capacity to understand and manage personal thoughts and feelings, as well as to positively influence interpersonal communication and social well-being. Emotional intelligence is a trainable skill that is extensively used in corporate business to improve well-being and performance, and it may also be significant in the self-management of emotions in patients with chronic disease. Importantly, research supports the proposition that emotional intelligence may be developed and learned at any time or any age, and training programs have been associated with increased well-being and better emotional regulation in patients with chronic disease. However, to date, no research has been done to investigate its value in patients with COPD. We aimed to investigate the association between emotional intelligence and two meaningful outcomes in COPD: quality of life and self-management abilities. Participants with moderate to severe COPD completed a disease-specific quality of life tool (Chronic Respiratory Questionnaire), the Trait Emotional Intelligence Questionnaire, the Self-Management Abilities Scale, the modified Medical Research Council Dyspnea Scale, and pulmonary function tests, and also provided information about living conditions and self-reported health care use. A total of 310 patients with COPD (mean age, 69 ± 9 yr; 40% female; mean FEV1%, 42.4 ± 15.8) participated in the study. Emotional intelligence was significantly and independently associated with self-management abilities (P emotions, and mastery; P Emotional intelligence may represent an important attribute in COPD, as it is associated with self-management

  4. Self-management in patients with COPD: theoretical context, content, outcomes, and integration into clinical care.

    Science.gov (United States)

    Kaptein, Ad A; Fischer, Maarten J; Scharloo, Margreet

    2014-01-01

    In this narrative review, we put self-management in the context of a 50-year history of research about how patients with COPD respond to their illness. We review a definition of self-management, and emphasize that self-management should be combined with disease management and the chronic care model in order to be effective. Reviewing the empirical status of self-management in COPD, we conclude that self-management is part and parcel of modern, patient-oriented biopsychosocial care. In pulmonary rehabilitation programs, self-management is instrumental in improving patients' functional status and quality of life. We conclude by emphasizing how studying the way persons with COPD make sense of their illness helps in refining self-management, and thereby patient-reported outcomes in COPD.

  5. Self-management support and training for patients with chronic and complex conditions improves health-related behaviour and health outcomes.

    Science.gov (United States)

    Harvey, Peter W; Petkov, John N; Misan, Gary; Fuller, Jeffrey; Battersby, Malcolm W; Cayetano, Teofilo N; Warren, Kate; Holmes, Paul

    2008-05-01

    The Sharing Health Care SA chronic disease self-management (CDSM) project in rural South Australia was designed to assist patients with chronic and complex conditions (diabetes, cardiovascular disease and arthritis) to learn how to participate more effectively in the management of their condition and to improve their self-management skills. Participants with chronic and complex conditions were recruited into the Sharing Health Care SA program and offered a range of education and support options (including a 6-week peer-led chronic disease self-management program) as part of the Enhanced Primary Care care planning process. Patient self-reported data were collected at baseline and subsequent 6-month intervals using the Partners in Health (PIH) scale to assess self-management skill and ability for 175 patients across four data collection points. Health providers also scored patient knowledge and self-management skills using the same scale over the same intervals. Patients also completed a modified Stanford 2000 Health Survey for the same time intervals to assess service utilisation and health-related lifestyle factors. Results show that both mean patient self-reported PIH scores and mean health provider PIH scores for patients improved significantly over time, indicating that patients demonstrated improved understanding of their condition and improved their ability to manage and deal with their symptoms. These results suggest that involvement in peer-led self-management education programs has a positive effect on patient self-management skill, confidence and health-related behaviour.

  6. Self-management interventions including action plans for exacerbations versus usual care in patients with chronic obstructive pulmonary disease.

    Science.gov (United States)

    Lenferink, Anke; Brusse-Keizer, Marjolein; van der Valk, Paul Dlpm; Frith, Peter A; Zwerink, Marlies; Monninkhof, Evelyn M; van der Palen, Job; Effing, Tanja W

    2017-08-04

    Chronic Obstructive Pulmonary Disease (COPD) self-management interventions should be structured but personalised and often multi-component, with goals of motivating, engaging and supporting the patients to positively adapt their behaviour(s) and develop skills to better manage disease. Exacerbation action plans are considered to be a key component of COPD self-management interventions. Studies assessing these interventions show contradictory results. In this Cochrane Review, we compared the effectiveness of COPD self-management interventions that include action plans for acute exacerbations of COPD (AECOPD) with usual care. To evaluate the efficacy of COPD-specific self-management interventions that include an action plan for exacerbations of COPD compared with usual care in terms of health-related quality of life, respiratory-related hospital admissions and other health outcomes. We searched the Cochrane Airways Group Specialised Register of trials, trials registries, and the reference lists of included studies to May 2016. We included randomised controlled trials evaluating a self-management intervention for people with COPD published since 1995. To be eligible for inclusion, the self-management intervention included a written action plan for AECOPD and an iterative process between participant and healthcare provider(s) in which feedback was provided. We excluded disease management programmes classified as pulmonary rehabilitation or exercise classes offered in a hospital, at a rehabilitation centre, or in a community-based setting to avoid overlap with pulmonary rehabilitation as much as possible. Two review authors independently assessed trial quality and extracted data. We resolved disagreements by reaching consensus or by involving a third review author. Study authors were contacted to obtain additional information and missing outcome data where possible. When appropriate, study results were pooled using a random-effects modelling meta-analysis. The primary

  7. Manage at work: a randomized, controlled trial of a self-management group intervention to overcome workplace challenges associated with chronic physical health conditions.

    Science.gov (United States)

    Shaw, William S; Besen, Elyssa; Pransky, Glenn; Boot, Cécile R L; Nicholas, Michael K; McLellan, Robert K; Tveito, Torill H

    2014-05-28

    The percentage of older and chronically ill workers is increasing rapidly in the US and in many other countries, but few interventions are available to help employees overcome the workplace challenges of chronic pain and other physical health conditions. While most workers are eligible for job accommodation and disability compensation benefits, other workplace strategies might improve individual-level coping and problem solving to prevent work disability. In this study, we hypothesize that an employer-sponsored group intervention program employing self-management principles may improve worker engagement and reduce functional limitation associated with chronic disorders. In a randomized controlled trial (RCT), workers participating in an employer-sponsored self-management group intervention will be compared with a no-treatment (wait list) control condition. Volunteer employees (n = 300) will be recruited from five participating employers and randomly assigned to intervention or control. Participants in the intervention arm will attend facilitated group workshop sessions at work (10 hours total) to explore methods for improving comfort, adjusting work habits, communicating needs effectively, applying systematic problem solving, and dealing with negative thoughts and emotions about work. Work engagement and work limitation are the principal outcomes. Secondary outcomes include fatigue, job satisfaction, self-efficacy, turnover intention, sickness absence, and health care utilization. Measurements will be taken at baseline, 6-, and 12-month follow-up. A process evaluation will be performed alongside the randomized trial. This study will be most relevant for organizations and occupational settings where some degree of job flexibility, leeway, and decision-making autonomy can be afforded to affected workers. The study design will provide initial assessment of a novel workplace approach and to understand factors affecting its feasibility and effectiveness

  8. Patient education. Timeless principles of learning: a solid foundation for enhancing chronic disease self-management.

    Science.gov (United States)

    Suter, Paula M; Suter, W Newton

    2008-02-01

    The use of evidence-based principles of learning can contribute to the empowerment of patients as they adopt self-management skills aligned with healthy behaviors. This article, jointly written by a nurse and an educator, describes these timeless principles and how home care clinicians and patients benefit from their use.

  9. Using mobile phones and short message service to deliver self-management interventions for chronic conditions: a meta-review.

    Science.gov (United States)

    Jones, Katherine R; Lekhak, Nirmala; Kaewluang, Napatsawan

    2014-04-01

    The worldwide burden of chronic disease is widespread and growing. This shift from acute to chronic care requires rethinking how resources are invested in managing these conditions. One response has been to create programs and interventions that have the goal of helping patients better manage their own conditions. Over time, these self-management interventions and strategies have increasingly relied on various technologies for their implementation, with the newest technology being mobile phones and short message service (SMS). The objective of this meta-review was to evaluate the current evidence on the use of mobile phones and SMS to deliver self-management interventions for chronic conditions. A meta-review was conducted of the 11 systematic reviews (SRs) that were identified and retrieved after an extensive search of electronic databases covering the years 2000-2012. Relevant information was abstracted from each systematic review and a quality assessment carried out using the AMSTAR ("A Measurement Tool to Assess Systematic Reviews") criteria. The number and types of included studies and total number of subjects varied significantly across the systematic reviews. Mobile phone text messaging was reported to significantly improve adherence to appointments and antiretroviral therapy, short-term smoking quit rates, and selected clinical and behavioral outcomes. AMSTAR scores ranged from 11 to 3, reflecting substantial variation in SR quality. Mobile phones and SMS show promise as a technology to deliver self-management interventions to improve outcomes of chronic care management. However, the quality of future studies and systematic reviews needs to be improved. There also are unresolved issues about the technology itself. © 2014 Sigma Theta Tau International.

  10. 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

  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. Closing the loop in person-centered care: patient experiences of a chronic kidney disease self-management intervention

    Directory of Open Access Journals (Sweden)

    Havas K

    2017-11-01

    Full Text Available Kathryn Havas,1,2 Clint Douglas,1 Ann Bonner1–3 1School of Nursing, Queensland University of Technology, 2NHMRC Chronic Kidney Disease Centre for Research Excellence, University of Queensland, 3Kidney Health Service, Metro North Hospital and Health Service, Brisbane, QLD, Australia Purpose: The provision of self-management support (SMS for people with earlier stages (1–4 of chronic kidney disease (CKD can improve patient outcomes and extend time to dialysis. However, attempts to deliver such support have often not taken patient preferences into account. After the development, implementation, and quantitative evaluation of the person-centered CKD-SMS intervention, the aim of this study was to investigate participant experiences and perceptions of the program, as well as to seek suggestions to improve future SMS attempts.Patients and methods: Semi-structured, face-to-face interviews were conducted with almost all (63/66 participants in the CKD-SMS. Deductive categories were derived from previous research into self-management from the CKD patient’s perspective, and this was supplemented by categories that emerged inductively during multiple readings of interview transcripts. Content analysis was used to analyze interview data.Results: Participants recognized self-management of CKD as complex and multifaceted. They felt that the CKD-SMS helped them develop skills to engage in necessary self-management tasks, as well as their knowledge about their condition and confidence to take an active role in their healthcare. These participants experience a healthcare environment that is characterized by complexity and inconsistency, and participation in the intervention helped them to navigate it. The benefit of participating in this research to contribute to the scientific literature was also recognized by participants. Overall, participants found the CKD-SMS useful in its current format, and made some suggestions for future interventions

  13. Does self-management for return to work increase the effectiveness of vocational rehabilitation for chronic compensated musculoskeletal disorders? - Protocol for a randomised controlled trial

    Directory of Open Access Journals (Sweden)

    McLeod Rebecca

    2010-06-01

    Full Text Available Abstract Background Musculoskeletal disorders are common and costly disorders to workers compensation and motor accident insurance systems and are a leading contributor to the burden of ill-health. In Australia, vocational rehabilitation is provided to workers to assist them to stay in, or return to work. Self-management training may be an innovative addition to improve health and employment outcomes from vocational rehabilitation. Methods/Design The research plan contains mixed methodology consisting of a single blind randomised controlled trial, an economic evaluation and qualitative research. Participants (n = 366 are volunteers with compensated musculoskeletal disorders of 3 months to 3 years in duration who were working at the time of the injury/onset of the chronic disorder. The trial tests the effectiveness of usual vocational rehabilitation plus the Chronic Disease Self-Management Program (CDSMP to which two additional and newly-developed modules have been added, against vocational rehabilitation alone (control The modules added to the CDSMP focus on how to navigate through compensation systems and manage the return to work process, and aim to be relevant to those in a vocational rehabilitation setting. The primary outcome of this study is readiness for return to work which will be evaluated using the Readiness for Return-to-Work scale. Secondary outcomes include return to work status, health efficacy (heiQ™ questionnaire and general health status (SF-12v2® Health Survey. Measures will be taken at baseline, immediately post-intervention and at 6- and 12- months post-intervention by an independent assessor. An economic evaluation will compare the costs and outcomes between the intervention and control groups in terms of cost-effectiveness and a partial cost-benefit or cost analysis. The impact of the intervention will also be evaluated qualitatively, in terms of its acceptability to stakeholders. Discussion This article describes the

  14. Establishing an independent mobile health programme for chronic disease self-management support in Bolivia

    Directory of Open Access Journals (Sweden)

    John D Piette

    2014-08-01

    Full Text Available Background: Mobile health (m-health work in low and middle-income countries (LMICs mainly consists of pilot programmes with an unclear path to scaling and dissemination. We describe the deployment and testing of an m-health platform for non-communicable disease (NCD self-management support in Bolivia. Methods: 364 primary care patients in La Paz with diabetes or hypertension completed surveys about their use of mobile phones, health and access to care. 165 of those patients then participated in a 12-week demonstration of automated telephone monitoring and self-management support. Weekly Interactive Voice Response (IVR calls were made from a platform established at a university in La Paz, under the direction of the regional health ministry. Results: 37% of survey respondents spoke indigenous languages at home, and 38% had six or fewer years of education. 82% had a mobile phone; half (45% used text messaging with a standard phone, and 9% had a smartphone. Smartphones were least common among patients who were older, spoke indigenous languages, or had less education. IVR programme participants completed 1007 self-management support calls, with an overall response rate of 51%. IVR call completion was lower among older adults, but was not related to patients’ ethnicity, health status or healthcare access. IVR health and self-care reports were consistent with information reported during baseline interviews. Patients’ likelihood of reporting excellent, very good, or good health (versus fair or poor health via IVR increased during programme participation, and was associated with better medication adherence. Patients completing follow-up interviews were satisfied with the programme, with 19/20 (95% reporting that they would recommend it to a friend. Conclusions: By collaborating with LMICs, m-health programmes can be transferred from higher-resource centres to LMICs and implemented in ways that improve access to self-management support among people

  15. Establishing an independent mobile health program for chronic disease self-management support in bolivia.

    Science.gov (United States)

    Piette, John D; Valverde, Helen; Marinec, Nicolle; Jantz, Rachel; Kamis, Kevin; de la Vega, Carlos Lazo; Woolley, Timothy; Pinto, Bismarck

    2014-01-01

    Mobile health (m-health) work in low- and middle-income countries (LMICs) mainly consists of small pilot programs with an unclear path to scaling and dissemination. We describe the deployment and testing of an m-health platform for non-communicable disease (NCD) self-management support in Bolivia. Three hundred sixty-four primary care patients in La Paz with diabetes or hypertension completed surveys about their use of mobile phones, health and access to care. One hundred sixty-five of those patients then participated in a 12-week demonstration of automated telephone monitoring and self-management support. Weekly interactive voice response (IVR) calls were made from a platform established at a university in La Paz, under the direction of the regional health ministry. Thirty-seven percent of survey respondents spoke indigenous languages at home and 38% had six or fewer years of education. Eighty-two percent had a mobile phone, 45% used text messaging with a standard phone, and 9% had a smartphone. Smartphones were least common among patients who were older, spoke indigenous languages, or had less education. IVR program participants completed 1007 self-management support calls with an overall response rate of 51%. IVR call completion was lower among older adults, but was not related to patients' ethnicity, health status, or healthcare access. IVR health and self-care reports were consistent with information reported during in-person baseline interviews. Patients' likelihood of reporting excellent, very good, or good health (versus fair or poor health) via IVR increased during program participation and was associated with better medication adherence. Patients completing follow-up interviews were satisfied with the program, with 19/20 (95%) reporting that they would recommend it to a friend. By collaborating with LMICs, m-health programs can be transferred from higher-resource centers to LMICs and implemented in ways that improve access to self-management support among

  16. Patient-provider relationship as mediator between adult attachment and self-management in primary care patients with multiple chronic conditions.

    Science.gov (United States)

    Brenk-Franz, Katja; Strauß, Bernhard; Tiesler, Fabian; Fleischhauer, Christian; Schneider, Nico; Gensichen, Jochen

    2017-06-01

    The conceptual model of attachment theory has been applied to understand the predispositions of patients in medical care and the patient-provider relationship. In patients with chronic conditions insecure attachment was connected to poorer self-management. The patient-provider relationship is associated with a range of health related outcomes and self-management skills. We determined whether the quality of the patient-provider relationship mediates the link between adult attachment and self-management among primary care patients with multiple chronic diseases. 209 patients with a minimum of three chronic diseases (including type II diabetes, hypertension and at least one other chronic condition) between the ages of 50 and 85 from eight general practices were included in the APRICARE cohort study. Adult attachment was measured via self-report (ECR-RD), self-management skills by the FERUS and the patient-provider relationship by the PRA-D. The health status and chronicity were assessed by the GP. Multiple mediation analyses were used to examine whether aspects of the patient-provider relationship (communication, information, affectivity) are a mediators of associations between adult attachment and self-management. The analysis revealed that the quality of the patient-provider relationship mediated the effect of attachment on self-management in patients with multiple chronic conditions. Particularly the quality of communication and information over the course of treatment has a significant mediating influence. A personalized, attachment-related approach that promotes active patient-provider communication and gives information about the treatment to the patient may improve self-management skills in patients. Copyright © 2017 Elsevier Inc. All rights reserved.

  17. Establishing an Independent Mobile Health Program for Chronic Disease Self-Management Support in Bolivia

    Science.gov (United States)

    Piette, John D.; Valverde, Helen; Marinec, Nicolle; Jantz, Rachel; Kamis, Kevin; de la Vega, Carlos Lazo; Woolley, Timothy; Pinto, Bismarck

    2014-01-01

    Background: Mobile health (m-health) work in low- and middle-income countries (LMICs) mainly consists of small pilot programs with an unclear path to scaling and dissemination. We describe the deployment and testing of an m-health platform for non-communicable disease (NCD) self-management support in Bolivia. Methods: Three hundred sixty-four primary care patients in La Paz with diabetes or hypertension completed surveys about their use of mobile phones, health and access to care. One hundred sixty-five of those patients then participated in a 12-week demonstration of automated telephone monitoring and self-management support. Weekly interactive voice response (IVR) calls were made from a platform established at a university in La Paz, under the direction of the regional health ministry. Results: Thirty-seven percent of survey respondents spoke indigenous languages at home and 38% had six or fewer years of education. Eighty-two percent had a mobile phone, 45% used text messaging with a standard phone, and 9% had a smartphone. Smartphones were least common among patients who were older, spoke indigenous languages, or had less education. IVR program participants completed 1007 self-management support calls with an overall response rate of 51%. IVR call completion was lower among older adults, but was not related to patients’ ethnicity, health status, or healthcare access. IVR health and self-care reports were consistent with information reported during in-person baseline interviews. Patients’ likelihood of reporting excellent, very good, or good health (versus fair or poor health) via IVR increased during program participation and was associated with better medication adherence. Patients completing follow-up interviews were satisfied with the program, with 19/20 (95%) reporting that they would recommend it to a friend. Conclusion: By collaborating with LMICs, m-health programs can be transferred from higher-resource centers to LMICs and implemented in ways that

  18. A pilot evaluation of Arthritis Self-Management Program by lay leaders in patients with chronic inflammatory arthritis in Hong Kong.

    Science.gov (United States)

    Leung, Ying-Ying; Kwan, Jackie; Chan, Patsy; Poon, Peter K K; Leung, Christine; Tam, Lai-Shan; Li, Edmund K; Kwok, Anna

    2016-04-01

    The objectives of this paper are to evaluate the efficacy of a community-based lay-led Arthritis Self-Management Program (ASMP) among patients with chronic inflammatory arthritis and evaluate the effectiveness of "shared care collaboration" between hospital and community. We trained 17 lay leaders and recruited patients with chronic inflammatory arthritis via a new shared-care model between hospital rheumatology centers and community organizations. Participants were allocated to interventional group or a wait list control group. Evaluations were completed before, after (6 weeks), and 3 months after ASMP. We performed analysis of covariance with adjustment with age, sex, marital status, education, employment, duration of illness, and disability at baseline. A total of 65 participants and 32 controls completed the study. The mean (SD) age and duration of illness were 52.0 (11.4) and 5.6 (7.3) years, 90.7 % were female, 80.4 % had rheumatoid arthritis; 25.8, 53.6, and 12.4 % referrals were from hospitals, community organizations, and patient self-help groups, respectively. The interventional group had significantly less pain (p = 0.049 at 6 weeks), used more cognitive coping methods (p = 0.008 at 6 weeks, p = 0.041 at 3 months) and practiced more aerobic exercise (p = 0.049 at 6 weeks, p = 0.008 at 3 months) after adjustment of covariance. The interventional group had a trend of improvement in self-efficacy, fatigue, self-rated health, and health distress. A community-based lay-led ASMP showed positive beneficial effects on participants with chronic inflammatory arthritis. Shared-care collaboration between hospitals, community organizations, and patient self-help groups was demonstrated.

  19. [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.

  20. 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.

  1. 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

  2. Randomised feasibility study of a novel experience-based internet intervention to support self-management in chronic asthma.

    Science.gov (United States)

    Newhouse, Nikki; Martin, Angela; Jawad, Sena; Yu, Ly-Mee; Davoudianfar, Mina; Locock, Louise; Ziebland, Sue; Powell, John

    2016-12-28

    To determine the feasibility of a randomised controlled trial (RCT) assessing the effects of an experience-based website as a resource for the self-management of chronic asthma. Feasibility, single-blind RCT in 2 regions of England. Randomisation used computer-generated random number sequence in a 1:1 ratio, after baseline data collection, to website access for 2 weeks. Adults (age ≥18 years), with clinically diagnosed asthma as coded in their primary care electronic record, prescribed inhaled corticosteroids for at least 3 months in the previous year, were recruited from 9 general practices. The EXPERT asthma intervention is an interactive PC/laptop/tablet/smartphone compatible website designed with extensive input from adults with asthma. It provides experience-based information and aims to support subjective perception of self-efficacy, self-management and improve health status. Primary outcomes were consent/recruitment, website usage and completion of outcome measures. Secondary outcomes included Partners in Health (PIH) questionnaire, the Chronic Disease Self-Efficacy Scale, the SF36 and the E-Health Impact Questionnaire. Participant blinding postrandomisation was not possible. The analysis was blind to allocation. Recruitment target exceeded. 148 participants randomised (73 intervention group). Age range 19-84 years; 59% female. 121 of 148 (84%; 62 intervention group) followed up. The median number of logins was 2 (IQR 2-3, range 1-48). Minimal differences of change from baseline between groups; both showed improvement in health state or management of their condition with no significant differences between arms. No adverse events. Recruitment and retention confirmed feasibility. The trends towards improved outcomes suggest that further research on digital interventions based on exposure to others' personal experiences may be of value in the self-management of chronic asthma. ISRCTN29549695; Results. Published by the BMJ Publishing Group Limited. For

  3. 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.

  4. 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

  5. Engaging general practice nurses in chronic disease self-management support in Australia: insights from a controlled trial in chronic obstructive pulmonary disease.

    Science.gov (United States)

    Walters, Julia A E; Courtney-Pratt, Helen; Cameron-Tucker, Helen; Nelson, Mark; Robinson, Andrew; Scott, Jenn; Turner, Paul; Walters, E Haydn; Wood-Baker, Richard

    2012-01-01

    The growing burden of chronic disease will increase the role of primary care in supporting self-management and health behaviour change. This role could be undertaken to some extent by the increased practice nurse workforce that has occurred over recent years. Mixed methods were used to investigate the potential for general practice nurses to adopt this role during a 12-month randomised controlled study of telephone-delivered health mentoring in Tasmanian practices. Nurses (general practice and community health) were trained as health mentors to assist chronic obstructive pulmonary disease patients to identify and achieve personal health related goals through action plans. Of 21% of invited practices that responded, 19 were allocated to health mentoring; however, general practice nurses were unable to train as health mentors in 14 (74%), principally due to lack of financial compensation and/or workload pressure. For five general practice nurses trained as health mentors, their roles had previously included some chronic disease management, but training enhanced their understanding and skills of self-management approaches and increased the focus on patient partnership, prioritising patients' choices and achievability. Difficulties that led to early withdrawal of health mentors were competing demands, insufficient time availability, phone calls having lower priority than face-to-face interactions and changing employment. Skills gained were rated as valuable, applicable to all clinical practice and transferable to other health care settings. Although these results suggest that training can enhance general practice nurses' skills to deliver self-management support in chronic disease, there are significant system barriers that need to be addressed through funding models and organisational change.

  6. Self-management behaviour and support among primary care COPD patients: cross-sectional analysis of data from the Birmingham Chronic Obstructive Pulmonary Disease Cohort.

    Science.gov (United States)

    Khan, Ainee; Dickens, Andrew P; Adab, Peymane; Jordan, Rachel E

    2017-07-20

    Self-management support for chronic obstructive pulmonary disease (COPD) patients is recommended by UK national guidelines, but extent of implementation is unknown. We aimed to describe self-management behaviour and support among COPD patients and explore behaviour associated with having a self-management plan. We undertook cross-sectional analysis of self-reported data from diagnosed COPD patients in the Birmingham COPD Cohort study. Questionnaire items relevant to self-management behaviour, knowledge of COPD, receipt of self-management plans and advice from healthcare professionals were examined. Multiple regression models were used to identify behaviour associated with having a self-management plan. One-thousand seventy-eight participants (676 males, 62.7%, mean age 69.8 (standard deviation 9.0) years) were included. The majority reported taking medications as instructed (940, 94.0%) and receiving annual influenza vaccinations (962, 89.2%). Only 400 (40.4%) participants had self-management plans, 538 (49.9%) reported never having received advice on diet/exercise and 110 (42.7%) current smokers had been offered practical help to stop smoking in the previous year. General knowledge about COPD was moderate (mean total Bristol COPD Knowledge Questionnaire score: 31.5 (standard deviation 10.7); max score 65), corresponding to 48.5% of questions answered correctly. Having a self-management plan was positively associated with self-reported adherence to medication (odds ratio 3.10, 95% confidence interval 1.43 to 6.72), attendance at a training course (odds ratio 2.72, 95% confidence interval 1.81 to 4.12), attendance at a support group (odds ratio 6.28, 95% confidence interval 2.96 to 13.35) and better disease knowledge (mean difference 4.87, 95% confidence interval 3.16 to 6.58). Primary care healthcare professionals should ensure more widespread implementation of individualised self-management plans for all patients and improve the lifestyle advice provided. CALL FOR

  7. The Chronic Disease Self-Management Program: the experience of frequent users of health care services and peer leaders.

    Science.gov (United States)

    Hudon, Catherine; Chouinard, Maud-Christine; Diadiou, Fatoumata; Bouliane, Danielle; Lambert, Mireille; Hudon, Émilie

    2016-04-01

    Large amount of evidence supports the contribution of the Stanford Chronic Disease Self-Management Program (CDSMP) to a global chronic disease management strategy. However, many studies have suggested further exploring of the factors influencing acceptance and completion of participants in this program. This study aimed to describe and examine factors associated with acceptance and completion rates of the CDSMP among frequent users of health care services, and to highlight the experience of patients and peer leaders who facilitated the program. A descriptive design with mixed sequential data was used. Acceptance and completion rates were calculated and their relationship with patient characteristics was examined in regression analysis (n = 167). Interviews were conducted among patients who accepted (n = 11) and refused (n = 13) to participate and with the program coordinator. Focus groups were held with the seven peer leaders who facilitated the program. Data were analysed using thematic analysis. Of the 167 patients invited, 60 (36%) accepted to participate in the program. Group format was the most frequent reason to decline the invitation to participate. Twenty-eight participants (47%) completed the program. Participants who dropped out during the program raised different reasons such as poor health and too much heterogeneity among participants. Factors such as location, schedule, content, group composition and facilitation were considered as important elements contributing to the success of the program. The CDSMP could therefore be considered as a self-management support option for this vulnerable clientele, while taking measures to avoid too much heterogeneity among participants to improve completion rates. © The Author 2016. Published by Oxford University Press.

  8. Dissemination of Chronic Disease Self-Management Education (CDSME) Programs in the United States: Intervention Delivery by Rurality.

    Science.gov (United States)

    Smith, Matthew Lee; Towne, Samuel D; Herrera-Venson, Angelica; Cameron, Kathleen; Kulinski, Kristie P; Lorig, Kate; Horel, Scott A; Ory, Marcia G

    2017-06-14

    Background : Alongside the dramatic increase of older adults in the United States (U.S.), it is projected that the aging population residing in rural areas will continue to grow. As the prevalence of chronic diseases and multiple chronic conditions among adults continues to rise, there is additional need for evidence-based interventions to assist the aging population to improve lifestyle behaviors, and self-manage their chronic conditions. The purpose of this descriptive study was to identify the geospatial dissemination of Chronic Disease Self-Management Education (CDSME) Programs across the U.S. in terms of participants enrolled, workshops delivered, and counties reached. These dissemination characteristics were compared across rurality designations (i.e., metro areas; non-metro areas adjacent to metro areas, and non-metro areas not adjacent to metro areas). Methods : This descriptive study analyzed data from a national repository including efforts from 83 grantees spanning 47 states from December 2009 to December 2016. Counts were tabulated and averages were calculated. Results : CDSME Program workshops were delivered in 56.4% of all U.S. counties one or more times during the study period. Of the counties where a workshop was conducted, 50.5% were delivered in non-metro areas. Of the 300,640 participants enrolled in CDSME Programs, 12% attended workshops in non-metro adjacent areas, and 7% attended workshops in non-metro non-adjacent areas. The majority of workshops were delivered in healthcare organizations, senior centers/Area Agencies on Aging, and residential facilities. On average, participants residing in non-metro areas had better workshop attendance and retention rates compared to participants in metro areas. Conclusions : Findings highlight the established role of traditional organizations/entities within the aging services network, to reach remote areas and serve diverse participants (e.g., senior centers). To facilitate growth in rural areas

  9. Dissemination of Chronic Disease Self-Management Education (CDSME Programs in the United States: Intervention Delivery by Rurality

    Directory of Open Access Journals (Sweden)

    Matthew Lee Smith

    2017-06-01

    Full Text Available Background: Alongside the dramatic increase of older adults in the United States (U.S., it is projected that the aging population residing in rural areas will continue to grow. As the prevalence of chronic diseases and multiple chronic conditions among adults continues to rise, there is additional need for evidence-based interventions to assist the aging population to improve lifestyle behaviors, and self-manage their chronic conditions. The purpose of this descriptive study was to identify the geospatial dissemination of Chronic Disease Self-Management Education (CDSME Programs across the U.S. in terms of participants enrolled, workshops delivered, and counties reached. These dissemination characteristics were compared across rurality designations (i.e., metro areas; non-metro areas adjacent to metro areas, and non-metro areas not adjacent to metro areas. Methods: This descriptive study analyzed data from a national repository including efforts from 83 grantees spanning 47 states from December 2009 to December 2016. Counts were tabulated and averages were calculated. Results: CDSME Program workshops were delivered in 56.4% of all U.S. counties one or more times during the study period. Of the counties where a workshop was conducted, 50.5% were delivered in non-metro areas. Of the 300,640 participants enrolled in CDSME Programs, 12% attended workshops in non-metro adjacent areas, and 7% attended workshops in non-metro non-adjacent areas. The majority of workshops were delivered in healthcare organizations, senior centers/Area Agencies on Aging, and residential facilities. On average, participants residing in non-metro areas had better workshop attendance and retention rates compared to participants in metro areas. Conclusions: Findings highlight the established role of traditional organizations/entities within the aging services network, to reach remote areas and serve diverse participants (e.g., senior centers. To facilitate growth in rural

  10. 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

  11. The effects of patient-professional partnerships on the self-management and health outcomes for patients with chronic back pain: A quasi-experimental study.

    Science.gov (United States)

    Fu, Yu; Yu, Ge; McNichol, Elaine; Marczewski, Kathryn; José Closs, S

    2016-07-01

    Self-management may be a lifelong task for patients with chronic back pain. Research suggests that chronic pain self-management programmes have beneficial effects on patients' health outcome. Contemporary pain management theories and models also suggest that a good patient-professional partnership enhances patients' ability to self-manage their condition. (1) To investigate whether there is a reciprocal relationship between self-management of chronic back pain and health-related quality of life (HRQoL); (2) to examine the impact of a good patient-professional partnership on HRQoL, either directly, or indirectly via change in the ability to self-manage pain. This quasi-experimental study was designed to take place during routine service appointments and conducted in a community-based pain management service in the United Kingdom. A patient-professional partnership was established in which patients were actively involved in setting up goals and developing individualised care plans. Through this, health professionals undertook patients' health needs assessment, collaborated with patients to identify specific problems, provided written materials and delivered individualised exercise based on patients' life situation. Patients were recruited following initial consultation and followed up three months later. A total of 147 patients (65% female) with a mean age of 48 years (standard deviation (SD): 14 years) were enrolled in the study. Of these, 103 subjects completed the study. Patients were included if they were aged 18 and over, suffered from chronic back pain, had opted in to the clinic and had sufficient ability to read and understand English. Patients were excluded if they opted out this service after the initial assessment, suffered from malignant pain or required acute medical interventions for their pain relief. Self-reported measures of HRQoL, patient-professional partnerships and self-management ability were collected at baseline and three months later

  12. Growing up with a chronic condition: challenges for self-management en self-management support = Opgroeien met een chronische aandoening: uitdagingen voor zelfmanagement en zelfmanagementondersteuning.

    NARCIS (Netherlands)

    Sattoe, J.N.T.

    2015-01-01

    Becoming an adult often proves extra challenging for those who grow up with chronic conditions, because adaptive tasks related to living with a chronic condition can clash with normal developmental milestones. Finding a good balance and integrating these tasks in daily life is also referred to as

  13. 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.

  14. Participation, Retention, and Utilization of a Web-Based Chronic Disease Self-Management Intervention Among Older Adults.

    Science.gov (United States)

    Portz, Jennifer Dickman; LaMendola, Walter F

    2018-05-21

    Web-based self-management (web-based SM) interventions provide a potential resource for older adults to engage in their own chronic disease management. The purpose of this study is to investigate the effect of age on participation, retention, and utilization of a web-based SM intervention. This study reports the results of a secondary data analysis of the effects of age in a randomized trial of a web-based diabetes SM intervention. Participation, reasons for nonenrollment, retention, reasons for disenrollment, and website utilization were examined by age using discriminant function, survival analysis, and multivariate analysis of variance as appropriate. Website utilization by all participants dropped after 6 months but did not vary significantly with age. Though older adults (>60 of age) were less likely to choose to participate (F = 57.20, p Web-based SM offers a feasible approach for older adults with chronic disease to engage in their health management, but it needs to be improved. Those older adults who passed the rigorous screens for this experiment and chose to participate may have been more likely than younger participants to utilize web-based SM intervention tools. They were more persistent in their use of the web-based SM to try to improve health outcomes and formed definitive opinions about its utility before termination.

  15. 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…

  16. 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

  17. 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

  18. Interactive Voice Response-Based Self-management for Chronic Back Pain: The COPES Noninferiority Randomized Trial.

    Science.gov (United States)

    Heapy, Alicia A; Higgins, Diana M; Goulet, Joseph L; LaChappelle, Kathryn M; Driscoll, Mary A; Czlapinski, Rebecca A; Buta, Eugenia; Piette, John D; Krein, Sarah L; Kerns, Robert D

    2017-06-01

    Recommendations for chronic pain treatment emphasize multimodal approaches, including nonpharmacologic interventions to enhance self-management. Cognitive behavioral therapy (CBT) is an evidence-based treatment that facilitates management of chronic pain and improves outcomes, but access barriers persist. Cognitive behavioral therapy delivery assisted by health technology can obviate the need for in-person visits, but the effectiveness of this alternative to standard therapy is unknown. The Cooperative Pain Education and Self-management (COPES) trial was a randomized, noninferiority trial comparing IVR-CBT to in-person CBT for patients with chronic back pain. To assess the efficacy of interactive voice response-based CBT (IVR-CBT) relative to in-person CBT for chronic back pain. We conducted a noninferiority randomized trial in 1 Department of Veterans Affairs (VA) health care system. A total of 125 patients with chronic back pain were equally allocated to IVR-CBT (n = 62) or in-person CBT (n = 63). Patients treated with IVR-CBT received a self-help manual and weekly prerecorded therapist feedback based on their IVR-reported activity, coping skill practice, and pain outcomes. In-person CBT included weekly, individual CBT sessions with a therapist. Participants in both conditions received IVR monitoring of pain, sleep, activity levels, and pain coping skill practice during treatment. The primary outcome was change from baseline to 3 months in unblinded patient report of average pain intensity measured by the Numeric Rating Scale (NRS). Secondary outcomes included changes in pain-related interference, physical and emotional functioning, sleep quality, and quality of life at 3, 6, and 9 months. We also examined treatment retention. Of the 125 patients (97 men, 28 women; mean [SD] age, 57.9 [11.6] years), the adjusted average reduction in NRS with IVR-CBT (-0.77) was similar to in-person CBT (-0.84), with the 95% CI for the difference between groups (-0.67 to 0

  19. Serious games for improving knowledge and self-management in young people with chronic conditions: a systematic review and meta-analysis.

    Science.gov (United States)

    Charlier, Nathalie; Zupancic, Nele; Fieuws, Steffen; Denhaerynck, Kris; Zaman, Bieke; Moons, Philip

    2016-01-01

    To conduct a systematic review and meta-analysis of randomized controlled trials assessing the effectiveness of serious games in improving knowledge and/or self-management behaviors in young people with chronic conditions. The authors searched the databases PubMed, Cochrane Library, Web of Sciences, and PsychINFO for articles published between January 1990 and January 2014. Reference lists were hand-searched to retrieve additional studies. Randomized controlled trials that compared a digital game with either standard education or no specific education in a population of children and/or adolescents with chronic conditions were included. The authors identified 9 studies in which the effectiveness of serious games in young people with chronic conditions was evaluated using a randomized controlled trials design. Six studies found a significant improvement of knowledge in the game group from pretest to posttest; 4 studies showed significantly better knowledge in the game group than in the control group after the intervention. Two studies reported significantly better self-management in the game group than in the control group after the intervention. Seven studies were included in the meta-analysis. For knowledge, pooled estimate of Hedges' gu was 0.361 (95% confidence intervals, 0.098-0.624), demonstrating that serious games improve knowledge in patients. For self-management, pooled estimate of Hedges' gu was 0.310 (95% confidence intervals, 0.122-0.497), showing that gaming improves self-management behaviors. The authors' meta-analysis shows that educational video games can be effective in improving knowledge and self-management in young people with chronic conditions. © The Author 2015. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

  20. The development and pilot testing of the self-management programme of activity, coping and education for chronic obstructive pulmonary disease (SPACE for COPD).

    Science.gov (United States)

    Apps, Lindsay D; Mitchell, Katy E; Harrison, Samantha L; Sewell, Louise; Williams, Johanna E; Young, Hannah Ml; Steiner, Michael; Morgan, Mike; Singh, Sally J

    2013-01-01

    There is no independent standardized self-management approach available for chronic obstructive pulmonary disease (COPD). The aim of this project was to develop and test a novel self-management manual for individuals with COPD. Participants with a confirmed diagnosis of COPD were recruited from primary care. A novel self-management manual was developed with health care professionals and patients. Five focus groups were conducted with individuals with COPD (N = 24) during development to confirm and enhance the content of the prototype manual. The Self-management Programme of Activity, Coping and Education for Chronic Obstructive Pulmonary Disease (SPACE for COPD) manual was developed as the focus of a comprehensive self-management approach facilitated by health care professionals. Preference for delivery was initial face-to-face consultation with telephone follow-up. The SPACE for COPD manual was piloted with 37 participants in primary care. Outcome measures included the Self-Report Chronic Respiratory Questionnaire, Incremental Shuttle Walk Test, and Endurance Shuttle Walking Test (ESWT); measurements were taken at baseline and 6 weeks. The pilot study observed statistically significant improvements for the dyspnea domain of the Self-Report Chronic Respiratory Questionnaire and ESWT. Dyspnea showed a mean change of 0.67 (95% confidence interval 0.23-1.11, P = 0.005). ESWT score increased by 302.25 seconds (95% confidence interval 161.47-443.03, P COPD. The program, incorporating the SPACE for COPD manual, appears to provoke important changes in exercise capacity and breathlessness for individuals with COPD managed in primary care.

  1. Use of audiovisual media for education and self-management of patients with Chronic Obstructive Pulmonary Disease – COPD

    Directory of Open Access Journals (Sweden)

    Janaína Schäfer

    Full Text Available Introduction Chronic Obstructive Pulmonary Disease (COPD is considered a disease with high morbidity and mortality, even though it is a preventable and treatable disease. Objective To assess the effectiveness of an audiovisual educational material about the knowledge and self-management in COPD. Methods Quasi-experimental design and convenience sample was composed of COPD patients of Pulmonary Rehabilitation (PR (n = 42, in advanced stage of the disease, adults of both genders, and with low education. All subjects answered a specific questionnaire before and post-education audiovisual session, to assess their acquired knowledge about COPD. Results Positive results were obtained in the topics: COPD and its consequences, first symptom identified when the disease is aggravated and physical exercise practice. Regarding the second and third symptoms, it was observed that the education session did not improve this learning, as well as the decision facing the worsening of COPD. Conclusion COPD patients showed reasonable knowledge about the disease, its implications and symptomatology. Important aspects should be emphasized, such as identification of exacerbations of COPD and decision facing this exacerbation.

  2. Determining the efficacy of the chronic disease self-management programme and readability of 'living a healthy life with chronic conditions' in a New Zealand setting.

    Science.gov (United States)

    Cheng, J J-Y; Arenhold, F; Braakhuis, A J

    2016-11-01

    Self-management programmes are an increasingly popular way of treating chronic diseases. This study aims to determine the efficacy of the Stanford Chronic Disease Self-Management Programme (CDSMP) in a New Zealand context by assessing course outcomes and readability of the accompanying reference guide Living a Healthy Life with Chronic Conditions, 4th Edition. This is a cross-sectional pre-post study conducted in Auckland between August 2009 and September 2015, using CDSMP participants' baseline and follow-up Health Education Intervention Questionnaire (heiQ TM ) data. Readability of the guide was assessed using the Gunning Fog Index, Coleman Liau, Flesch Reading Ease, Flesch Kincaid Grade Level and Simplified Measure of Gobbledygook scores. Significant evidence of improvement (P ≤ 0.001) was observed in seven of the eight domains measured by the heiQ TM (Deakin University, Centre for Population Health Research, Melbourne, Vic., Australia). The greatest improvements were seen in skill and technique acquisition (mean change score 0.25, P ≤ 0.001) and self-monitoring and insight (0.18, P ≤ 0.001). There was little evidence of improvement in health service navigation (0.04, P = 0.17). Readability analyses indicate that a person needs to be reading at a minimum of U.S. 8th grade level in order to understand the text, and possibly up to 11th grade. The CDSMP is effective for improving patient self-efficacy in the New Zealand setting. However, adaptation of the programme to support better health service navigation is warranted. The readability of the reference guide is not suitable for this setting and requires further improvement. © 2016 Royal Australasian College of Physicians.

  3. 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.

  4. 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...

  5. Factors associated with integrating self-management support into primary care.

    Science.gov (United States)

    Crespo, Richard; Shrewsberry, Molly

    2007-06-01

    The purpose of this article is to expand the understanding of self-management support by describing factors that contribute to implementing a comprehensive self-management program in primary care. Four rural health centers in medically underserved areas participated in a study to document the implementation of a self-management program. This program consisted of a social marketing plan and decision-making tools to guide patients in making self-management behavior changes. The stages of change constructs of the transtheoretical model were used to design the social marketing plan. Key informant interviews were conducted at 6-month and 9-month intervals to document the implementation process. A standardized set of questions was used in the interviews. The data from the interviews were analyzed using content analysis techniques. One of the principle findings is that self-management support requires putting a system in place, not just adding a new component to primary care. The health centers that fully implemented the self-management program made an organizational commitment to keep self-management on the agenda in management meetings, clinical staff set the example by adopting self-management behaviors, and patient self-management support was implemented in multiple patient care venues. Primary care centers with limited financial resources are able to integrate self-management support into their system of chronic illness care.

  6. Qualitative systematic review of barriers and facilitators to self-management of chronic obstructive pulmonary disease: views of patients and healthcare professionals.

    Science.gov (United States)

    Russell, Siân; Ogunbayo, Oladapo J; Newham, James J; Heslop-Marshall, Karen; Netts, Paul; Hanratty, Barbara; Beyer, Fiona; Kaner, Eileen

    2018-01-17

    Self-management interventions for chronic obstructive pulmonary disease (COPD) can improve quality of life, reduce hospital admissions, and improve symptoms. However, many factors impede engagement for patients and practitioners. Qualitative research, with its focus on subjective experience, can provide invaluable insights into such factors. Therefore, a systematic review and synthesis of qualitative evidence on COPD self-management from the perspective of patients, carers, and practitioners was conducted. Following a systematic search and screening, 31 studies were appraised and data extracted for analysis. This review found that patients can adapt to COPD; however, learning to self-manage is often a protracted process. Emotional needs are considerable; frustration, depression, and anxiety are common. In addition, patients can face an assortment of losses and limitations on their lifestyle and social interaction. Over time, COPD can consume their existence, reducing motivation. Support from family can prove vital, yet tinged with ambivalence and burden. Practitioners may not have sufficient time, resources, or appropriate skills or confidence to provide effective self-management support, particularly in regard to patients' psychosocial needs. This can compound patients' capability to engage in self-management. For COPD self-management to be effective, patients' psychosocial needs must be prioritised alongside medication and exacerbation management. In addition, patients' personal beliefs regarding COPD and its management should be reviewed periodically to avoid problematic behaviours and enhance positive adaptions to the disease. Patients with COPD are not a homogenous group and no one intervention will prove effective for all. Finally, practitioners require greater education, training, and support to successfully assist patients.

  7. Negotiating health and chronic illness in Filipino-Australians: a qualitative study with implications for health promotion.

    Science.gov (United States)

    Maneze, Della; Ramjan, Lucie; DiGiacomo, Michelle; Everett, Bronwyn; Davidson, Patricia Mary; Salamonson, Yenna

    2018-08-01

    In spite of the healthy immigrant effect, the prevalence of lifestyle-related chronic diseases among migrants is reported to approximate that of the host country with longer duration of stay. For example, higher rates of chronic diseases such as Type 2 diabetes and hypertension have been observed among Filipino migrants and these have been linked to acculturation. The aim of this study was to explore the experiences of Filipino-Australian migrants in managing their chronic health conditions in a Western host country. This paper reports on qualitative findings of a mixed methods study that used an explanatory sequential design. Nine focus group discussions were undertaken with 58 Filipino-Australian migrants with chronic disease. Thematic analysis was undertaken using a five-stage general purpose thematic framework ensuring that themes closely identified key participants' experiences . Findings revealed that health benefits provided by the health system in Australia were considered advantageous. However, a lack of social and instrumental support compounded isolation and disempowerment, limiting self-management strategies for chronic illnesses. Cultural beliefs and practices influenced their knowledge, attitude to and management of chronic disease, which health service providers overlooked because of perceived acculturation and English language skills. Overall this study has clearly identified recognition of cultural beliefs, language needs and support as three core needs of Filipino-Australian migrants with the elderly the most vulnerable. This paper highlights that self-management of chronic disease among elderly Filipino immigrants may be adversely affected by host language difficulties, a lack of social support and cultural issues, impacting on access to services, health-seeking behaviours and participation in health promotion initiatives. Language, culture-specific health interventions and resources and enhancing social support are likely important strategies in

  8. Self-management education for cystic fibrosis.

    LENUS (Irish Health Repository)

    Savage, Eileen

    2011-01-01

    Self-management education may help patients with cystic fibrosis and their families to choose, monitor and adjust treatment requirements for their illness, and also to manage the effects of illness on their lives. Although self-management education interventions have been developed for cystic fibrosis, no previous systematic review of the evidence of effectiveness of these interventions has been conducted.

  9. 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 ...

  10. Telehealth Interventions to Support Self-Management of Long-Term Conditions: A Systematic Metareview of Diabetes, Heart Failure, Asthma, Chronic Obstructive Pulmonary Disease, and Cancer.

    Science.gov (United States)

    Hanlon, Peter; Daines, Luke; Campbell, Christine; McKinstry, Brian; Weller, David; Pinnock, Hilary

    2017-05-17

    Self-management support is one mechanism by which telehealth interventions have been proposed to facilitate management of long-term conditions. The objectives of this metareview were to (1) assess the impact of telehealth interventions to support self-management on disease control and health care utilization, and (2) identify components of telehealth support and their impact on disease control and the process of self-management. Our goal was to synthesise evidence for telehealth-supported self-management of diabetes (types 1 and 2), heart failure, asthma, chronic obstructive pulmonary disease (COPD) and cancer to identify components of effective self-management support. We performed a metareview (a systematic review of systematic reviews) of randomized controlled trials (RCTs) of telehealth interventions to support self-management in 6 exemplar long-term conditions. We searched 7 databases for reviews published from January 2000 to May 2016 and screened identified studies against eligibility criteria. We weighted reviews by quality (revised A Measurement Tool to Assess Systematic Reviews), size, and relevance. We then combined our results in a narrative synthesis and using harvest plots. We included 53 systematic reviews, comprising 232 unique RCTs. Reviews concerned diabetes (type 1: n=6; type 2, n=11; mixed, n=19), heart failure (n=9), asthma (n=8), COPD (n=8), and cancer (n=3). Findings varied between and within disease areas. The highest-weighted reviews showed that blood glucose telemonitoring with feedback and some educational and lifestyle interventions improved glycemic control in type 2, but not type 1, diabetes, and that telemonitoring and telephone interventions reduced mortality and hospital admissions in heart failure, but these findings were not consistent in all reviews. Results for the other conditions were mixed, although no reviews showed evidence of harm. Analysis of the mediating role of self-management, and of components of successful

  11. A 60-Week Prospective RCT of a Self-Management Intervention for Individuals With Serious Mental Illness and Diabetes Mellitus.

    Science.gov (United States)

    Sajatovic, Martha; Gunzler, Douglas D; Kanuch, Stephanie W; Cassidy, Kristin A; Tatsuoka, Curtis; McCormick, Richard; Blixen, Carol E; Perzynski, Adam T; Einstadter, Douglas; Thomas, Charles L; Lawless, Mary E; Martin, Siobhan; Falck-Ytter, Corinna; Seeholzer, Eileen L; McKibben, Christine L; Bauer, Mark S; Dawson, Neal V

    2017-09-01

    A 60-week randomized controlled trial assessed the effects of targeted training in illness management (TTIM) versus treatment as usual among 200 individuals with serious mental illness and diabetes mellitus. The study used the Clinical Global Impression (CGI), the Montgomery-Asberg Depression Rating Scale (MADRS), and the Brief Psychiatric Rating Scale (BPRS) to assess psychiatric symptoms; the Global Assessment of Functioning (GAF) and the Sheehan Disability Scale (SDS) to assess functioning; the 36-Item Short-Form Health Survey (SF-36) to assess general health, and serum glycosylated hemoglobin (HbA1c) to assess diabetes control. Participants' mean±SD age was 52.7±9.5 years, and 54% were African American. They were diagnosed as having depression (48%), schizophrenia (25%), and bipolar disorder (28%). At baseline, depression severity was substantial but psychosis severity was modest. At 60 weeks, there was greater improvement among TTIM participants versus treatment-as-usual recipients on the CGI (pDiabetes knowledge was significantly improved among TTIM participants but not in the treatment-as-usual group. In post hoc analyses among participants whose HbA1c levels at baseline met recommendations set by the American Diabetes Association for persons with high comorbidity (53%), TTIM participants had minimal change in HbA1c over the 60-week follow-up, whereas HbA1c levels worsened in the treatment-as-usual group. TTIM was associated with improved psychiatric symptoms, functioning, and diabetes knowledge compared with treatment as usual. Among participants with better diabetes control at baseline, TTIM participants had better diabetes control at 60 weeks compared with recipients of treatment as usual.

  12. 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…

  13. A review of behaviour change theories and techniques used in group based self-management programmes for chronic low back pain and arthritis.

    Science.gov (United States)

    Keogh, Alison; Tully, Mark A; Matthews, James; Hurley, Deirdre A

    2015-12-01

    Medical Research Council (MRC) guidelines recommend applying theory within complex interventions to explain how behaviour change occurs. Guidelines endorse self-management of chronic low back pain (CLBP) and osteoarthritis (OA), but evidence for its effectiveness is weak. This literature review aimed to determine the use of behaviour change theory and techniques within randomised controlled trials of group-based self-management programmes for chronic musculoskeletal pain, specifically CLBP and OA. A two-phase search strategy of electronic databases was used to identify systematic reviews and studies relevant to this area. Articles were coded for their use of behaviour change theory, and the number of behaviour change techniques (BCTs) was identified using a 93-item taxonomy, Taxonomy (v1). 25 articles of 22 studies met the inclusion criteria, of which only three reported having based their intervention on theory, and all used Social Cognitive Theory. A total of 33 BCTs were coded across all articles with the most commonly identified techniques being 'instruction on how to perform the behaviour', 'demonstration of the behaviour', 'behavioural practice', 'credible source', 'graded tasks' and 'body changes'. Results demonstrate that theoretically driven research within group based self-management programmes for chronic musculoskeletal pain is lacking, or is poorly reported. Future research that follows recommended guidelines regarding the use of theory in study design and reporting is warranted. Copyright © 2015 Elsevier Ltd. All rights reserved.

  14. Evaluation of a self-management patient education program for patients with chronic heart failure undergoing inpatient cardiac rehabilitation: study protocol of a cluster randomized controlled trial.

    Science.gov (United States)

    Meng, Karin; Musekamp, Gunda; Seekatz, Bettina; Glatz, Johannes; Karger, Gabriele; Kiwus, Ulrich; Knoglinger, Ernst; Schubmann, Rainer; Westphal, Ronja; Faller, Hermann

    2013-08-23

    Chronic heart failure requires a complex treatment regimen on a life-long basis. Therefore, self-care/self-management is an essential part of successful treatment and comprehensive patient education is warranted. However, specific information on program features and educational strategies enhancing treatment success is lacking. This trial aims to evaluate a patient-oriented and theory-based self-management educational group program as compared to usual care education during inpatient cardiac rehabilitation in Germany. The study is a multicenter cluster randomized controlled trial in four cardiac rehabilitation clinics. Clusters are patient education groups that comprise HF patients recruited within 2 weeks after commencement of inpatient cardiac rehabilitation. Cluster randomization was chosen for pragmatic reasons, i.e. to ensure a sufficient number of eligible patients to build large-enough educational groups and to prevent contamination by interaction of patients from different treatment allocations during rehabilitation. Rehabilitants with chronic systolic heart failure (n = 540) will be consecutively recruited for the study at the beginning of inpatient rehabilitation. Data will be assessed at admission, at discharge and after 6 and 12 months using patient questionnaires. In the intervention condition, patients receive the new patient-oriented self-management educational program, whereas in the control condition, patients receive a short lecture-based educational program (usual care). The primary outcome is patients' self-reported self-management competence. Secondary outcomes include behavioral determinants and self-management health behavior (symptom monitoring, physical activity, medication adherence), health-related quality of life, and treatment satisfaction. Treatment effects will be evaluated separately for each follow-up time point using multilevel regression analysis, and adjusting for baseline values. This study evaluates the effectiveness of a

  15. European Summit on the Prevention and Self-Management of Chronic Respiratory Diseases: report of the European Union Parliament Summit (29 March 2017).

    Science.gov (United States)

    Hellings, Peter W; Borrelli, David; Pietikainen, Sirpa; Agache, Ioana; Akdis, Cezmi; Bachert, Claus; Bewick, Michael; Botjes, Erna; Constantinidis, Jannis; Fokkens, Wytske; Haahtela, Tari; Hopkins, Claire; Illario, Maddalena; Joos, Guy; Lund, Valerie; Muraro, Antonella; Pugin, Benoit; Seys, Sven; Somekh, David; Stjärne, Pär; Valiulis, Arunas; Valovirta, Erkka; Bousquet, Jean

    2017-01-01

    On March 29, 2017, a European Summit on the Prevention and Self-Management of Chronic Respiratory Diseases (CRD) was organized by the European Forum for Research and Education in Allergy and Airway Diseases. The event took place in the European Parliament of Brussels and was hosted by MEP David Borrelli and MEP Sirpa Pietikainen. The aim of the Summit was to correspond to the needs of the European Commission and of patients suffering from CRD to join forces in Europe for the prevention and self-management. Delegates of the European Rhinologic Society, European Respiratory Society, European Academy of Allergy and Clinical Immunology, European Academy of Paediatrics, and European Patients Organization EFA all lectured on their vision and action plan to join forces in achieving adequate prevention and self-management of CRD in the context of Precision Medicine. Recent data highlight the preventive capacity of education on optimal care pathways for CRD. Self-management and patient empowerment can be achieved by novel educational on-line materials and by novel mobile health tools enabling patients and doctors to monitor and optimally treat CRDs based on the level of control. This report summarizes the contributions of the representatives of different European academic stakeholders in the field of CRD.

  16. 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

  17. A Controlled Pilot Trial of PainTracker Self-Manager, a Web-Based Platform Combined With Patient Coaching, to Support Patients' Self-Management of Chronic Pain.

    Science.gov (United States)

    Sullivan, Mark; Langford, Dale J; Davies, Pamela Stitzlein; Tran, Christine; Vilardaga, Roger; Cheung, Gifford; Yoo, Daisy; McReynolds, Justin; Lober, William B; Tauben, David; Vowles, Kevin E

    2018-03-29

    The objective of this study was to develop and pilot test a chronic pain empowerment and self-management platform, derived from acceptance and commitment therapy, in a pain specialty setting. A controlled, sequential, nonrandomized study design was used to accommodate intervention development and to test the efficacy of the PainTracker Self-Manager (PTSM) intervention (Web-based educational modules and outcome tracking combined with tailored patient coaching sessions and provider guidance). Generalized estimating equations evaluated changes over time (baseline, 3 months, 6 months) in pain self-efficacy (primary outcome), chronic pain acceptance (activity engagement and pain willingness), perceived efficacy in patient-provider interactions, pain intensity and interference, and overall satisfaction with pain treatment (secondary outcomes) between intervention (n = 48) and usual care control groups (n = 51). The full study sample (N = 99) showed greater improvements over time (significant Group × Time interactions) in pain self-efficacy and satisfaction with pain treatment. Among study completers (n = 82), greater improvement in activity engagement as well as pain intensity and interference were also observed. These preliminary findings support the efficacy of the PTSM intervention in a pain specialty setting. Further research is needed to refine and expand the PTSM intervention and to test it in a randomized trial in primary care settings. We developed a Web-based patient empowerment platform that combined acceptance and commitment therapy-based educational modules and tailored coaching sessions with longitudinal tracking of treatments and patient-reported outcomes, named PTSM. Pilot controlled trial results provide preliminary support for its efficacy in improving pain self-efficacy, activity engagement, pain intensity and interference, and satisfaction with pain treatment. Copyright © 2018 The American Pain Society. Published by Elsevier Inc. All

  18. 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.

  19. 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

  20. 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\\

  1. A randomised trial of the Flinders Program to improve patient self-management competencies in a range of chronic conditions: study rationale and protocol

    Directory of Open Access Journals (Sweden)

    Malcolm W. Battersby

    2010-03-01

    Full Text Available BackgroundSupporting self management is seen as an important healthservice strategy in dealing with the large and increasing healthburden of chronic conditions. Several types of selfmanagementprograms are available. Evidence to datesuggests that disease-specific and lay-led self managementprograms provide only part of the support needed forimproved outcomes. The Flinders Program is promising as ageneric self management intervention, which can becombined with targeted disease-specific and lay-ledinterventions, but it has yet to be evaluated for a range ofchronic conditions using a rigorous controlled trial design. Thispaper gives the rationale for a randomised controlled trial andprocess evaluation of the Flinders Program of chroniccondition self-management in community practice, and detailsand justifies the design of such a study.MethodThe design for a randomised trial and associated processevaluation, suited to evaluation of a complex and behaviouralintervention as it is applied in actual practice, is presented andjustified.ConclusionA randomised trial of the Flinders Program is required and afunctional design is presented. Results from this trial,currently underway, will test the effectiveness of the FlindersProgram in improving patient competencies in selfmanagementof chronic conditions in practice conditions.A process evaluation alongside the trial will exploresystem, provider and patient factors associated withgreater and lesser Program effectiveness.

  2. Health coaching to improve self-management and quality of life for low income patients with chronic obstructive pulmonary disease (COPD): protocol for a randomized controlled trial.

    Science.gov (United States)

    Huang, Beatrice; Willard-Grace, Rachel; De Vore, Denise; Wolf, Jessica; Chirinos, Chris; Tsao, Stephanie; Hessler, Danielle; Su, George; Thom, David H

    2017-06-09

    Chronic obstructive pulmonary disease (COPD) severely hinders quality of life for those affected and is costly to the health care system. Care gaps in areas such as pharmacotherapy, inhaler technique, and knowledge of disease are prevalent, particularly for vulnerable populations served by community clinics. Non-professionally licensed health coaches have been shown to be an effective and cost-efficient solution in bridging care gaps and facilitating self-management for patients with other chronic diseases, but no research to date has explored their efficacy in improving care for people living with COPD. This is multi-site, single blinded, randomized controlled trial evaluates the efficacy of health coaches to facilitate patient self-management of disease and improve quality of life for patients with moderate to severe COPD. Spirometry, survey, and an exercise capacity test are conducted at baseline and at 9 months. A short survey is administered by phone at 3 and 6 months post-enrollment. The nine month health coaching intervention focuses on enhancing disease understanding and symptom awareness, improving use of inhalers; making personalized plans to increase physical activity, smoking cessation, or otherwise improve disease management; and facilitating care coordination. The results of this study will provide evidence regarding the efficacy and feasibility of health coaching to improve self-management and quality of life for urban underserved patients with moderate to severe COPD. ClinicalTrials.gov identifier NCT02234284 . Registered 12 August 2014.

  3. 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

  4. 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.

  5. Storylines of self-management: narratives of people with diabetes from a multiethnic inner city population.

    Science.gov (United States)

    Greenhalgh, Trisha; Collard, Anna; Campbell-Richards, Desirée; Vijayaraghavan, Shanti; Malik, Farida; Morris, Joanne; Claydon, Anne

    2011-01-01

    to analyse the narratives of people with diabetes to inform the design of culturally congruent self-management education programmes. the study was based on quasi-naturalistic story-gathering; i.e. making real-time field notes of stories shared spontaneously in diabetes self-management education groups in a socioeconomically deprived London borough. Eighty-two adults aged 25-86, from six minority ethnic groups who were in the intervention arm of a randomized controlled trial of story-sharing, participated. Stories were translated in real time by the facilitator or group members. Ethnographic field notes were transcribed, and analysed thematically (to identify self-management domains raised by participants) and interpretively for over-arching storylines (i.e. considering how self-management domains were contextualized and made meaningful in personal narratives). Analysis was informed by both biomedical and sociological theories of self-management. people with diabetes identified seven self-management domains: knowledge; diet; exercise; medication; foot care; self-monitoring; and attending check-ups. Interpretive analysis revealed eight illness storylines within which these practical issues acquired social meaning and moral worth: becoming sick; rebuilding spoiled identity; becoming a practitioner of self-management; living a disciplined and balanced life; mobilizing a care network; navigating and negotiating in the health care system; managing the micro-morality of self-management 'choices'; and taking collective action. living with diabetes involves both medically recommended behaviours and complex biographical work to make sense of and cope with illness. Self-management education programmes should take closer account of over-arching storylines that pattern experience of chronic illness and recognize that some elements of self-management knowledge cannot be pre-specified in a structured curriculum. The Royal Society of Medicine Press Ltd 2011.

  6. 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…

  7. 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

  8. 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

  9. 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

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

    Directory of Open Access Journals (Sweden)

    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.

  11. Exploring telemonitoring and self-management by patients with chronic obstructive pulmonary disease: a qualitative study embedded in a randomized controlled trial.

    Science.gov (United States)

    Fairbrother, Peter; Pinnock, Hilary; Hanley, Janet; McCloughan, Lucy; Sheikh, Aziz; Pagliari, Claudia; McKinstry, Brian

    2013-12-01

    To explore patient and professional views on self-management in the context of telemonitoring in chronic obstructive pulmonary disease (COPD). Semi-structured interviews with patients with COPD and healthcare professionals participating in a randomized controlled trial of telemonitoring in Lothian, Scotland, explored experiences of using telemonitoring, and dynamics in patient-practitioner relationships. Transcribed data were analyzed using the Framework approach. 38 patients (mean age 67.5 years) and 32 professionals provided 70 interviews. Patients considered that telemonitoring empowered self-management by enhancing their understanding of COPD and providing additional justification for their decisions to adjust treatment or seek professional advice. Professionals discussed telemonitoring as promoting compliance with medical advice and encouraged patients to exercise personal responsibility within clinical parameters, but expressed concerns about promoting the sick role and creating dependence on telemonitoring. Telemonitoring assisted many patients to embrace greater responsibility for their health but the model of service provision remained clinician-centered. A medical model of 'compliant self-management' may paradoxically have promoted dependence on professionals. Patients and professionals shared responsibility for meeting the central objective of prompt management of exacerbations of COPD. Care is needed, however, to minimize the risk in some patients, of telemonitoring increasing dependence on practitioner support. Copyright © 2013 Elsevier Ireland Ltd. All rights reserved.

  12. 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

  13. 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.

  14. Manage at work: a randomized, controlled trial of a self-management group intervention to overcome workplace challenges associated with chronic physical health conditions

    NARCIS (Netherlands)

    Shaw, W.S.; Besen, E.; Pransky, G.; Boot, C.R.L.; Nicholas, M.K.; McLellan, R.K.; Tveito, T.H.

    2014-01-01

    Background: The percentage of older and chronically ill workers is increasing rapidly in the US and in many other countries, but few interventions are available to help employees overcome the workplace challenges of chronic pain and other physical health conditions. While most workers are eligible

  15. Results from 10 Years of a CBT Pain Self-Management Outpatient Program for Complex Chronic Conditions

    Directory of Open Access Journals (Sweden)

    Kathryn A. Boschen

    2016-01-01

    Full Text Available Background. Traditional unimodal interventions may be insufficient for treating complex pain, as they do not address cognitive and behavioural contributors to pain. Cognitive Behavioural Therapy (CBT and physical exercise (PE are empirically supported treatments that can reduce pain and improve quality of life. Objectives. To examine the outcomes of a pain self-management outpatient program based on CBT and PE at a rehabilitation hospital in Toronto, Ontario. Methods. The pain management group (PMG consisted of 20 sessions over 10 weeks. The intervention consisted of four components: education, cognitive behavioural skills, exercise, and self-management strategies. Outcome measures included the sensory, affective, and intensity of pain experience, depression, anxiety, pain disability, active and passive coping style, and general health functioning. Results. From 2002 to 2011, 36 PMGs were run. In total, 311 patients entered the program and 214 completed it. Paired t-tests showed significant pre- to posttreatment improvements in all outcomes measured. Patient outcomes did not differ according to the number or type of diagnoses. Both before and after treatment, women reported more active coping than men. Discussion. The PMGs improved pain self-management for patients with complex pain. Future research should use a randomized controlled design to better understand the outcomes of PMGs.

  16. Factors Influencing Self-Management in Chinese Adults with Type 2 Diabetes: A Systematic Review and Meta-Analysis

    Directory of Open Access Journals (Sweden)

    Xiaoping Luo

    2015-09-01

    Full Text Available Diabetes is a major public health problem in China. Diabetes self-management is critical for patients to achieved better health outcomes, however, previous studies have shown suboptimal diabetes self-management performance. We conducted a systematic review and meta-analysis to identify factors associated with diabetes self-management in Chinese adults. The results showed that confrontation, resignation, overall health beliefs, perceived susceptibility, perceived barriers, and self-efficacy were factors associated with overall diabetes self-management performance and six aspects of diabetes self-management behaviors. There is some limited evidence to suggest that provider-patient communication, married individuals, higher educational level, and higher household income level may also be linked to better diabetes self-management practice. Having healthcare insurance and utilizing chronic illness resources generally appeared to have a favorable effect on diabetes self-management performance. In addition, there were a number of factors for which the evidence is too limited to be able to ascertain its strength of association with diabetes self-management practice. The findings of this review suggest that diabetes self-management behaviors are affected by a wide range of personal and environmental factors, which allow health care providers to develop theory-based strategies to improve diabetes-self-management behaviors in this population.

  17. Evaluation of a Self-Management Program for Gastroesophageal Reflux Disease in China.

    Science.gov (United States)

    Xu, Wenhong; Sun, Changxian; Lin, Zheng; Lin, Lin; Wang, Meifeng; Zhang, Hongjie; Song, Yulei

    2016-01-01

    Gastroesophageal reflux disease is a chronic disease with a high incidence worldwide. The various symptoms have substantial impact on the quality of life of affected individuals. A long-term self-management program can increase the ability of patients to make behavioral changes, and health outcomes can improve as a consequence. This study's aim was to evaluate the effectiveness of a self-management program for gastroesophageal reflux disease. A total of 115 patients with gastroesophageal reflux disease were allocated to the experimental group and the control group. The former received self-management intervention along with conventional drug therapy, whereas the latter received standard outpatient care and conventional drug therapy. After the clinical trial, the control group also received the same self-management intervention. The levels of self-management behaviors, self-efficacy, gastroesophageal reflux disease symptoms, and psychological condition were compared. Those in the experimental group demonstrated significantly higher self-efficacy for managing their illness, showed positive changes in self-management behaviors, and had comparatively better remission of symptoms and improvement in psychological distress. The program helped patients with gastroesophageal reflux disease self-manage their illness as possible.

  18. 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

    Directory of Open Access Journals (Sweden)

    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

  19. 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.

  20. 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…

  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. 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. 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.

  6. 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.

  7. Comprehensive Self-Management Strategies.

    Science.gov (United States)

    Bourbeau, J; Lavoie, K L; Sedeno, M

    2015-08-01

    In this article, we provide a review of the literature on self-management interventions and we are giving some thought to how, when, and by whom they should be offered to patients. The present literature based on randomized clinical trials has demonstrated benefits (reduced hospital admissions and improved health status) for chronic obstructive pulmonary disease (COPD) patients undergoing self-management interventions, although there are still problems with the heterogeneity among interventions, study populations, follow-up time, and outcome measures that make generalization difficult in real life. Key to the success, self-management intervention has to target behavior change. Proper self-management support is a basic prerequisite, for example, techniques and skills used by health care providers "case manager" to instrument patients with the knowledge, confidence, and skills required to effectively self-manage their disease. To improve health behaviors and engagement in self-management, self-management interventions need to target enhancing intrinsic motivation to change. This will best be done using client-centered communication (motivational communication) that encourages patients to express what intrinsically motivates them (e.g., consistent with their values or life goals) to adopt certain health behavior, with the goal of helping them overcome their ambivalence about change. Finally, if we want to be able to design and implement self-management interventions that are integrated, coherent, and have a strong likelihood of success, we need to take a more careful look and give more attention at the case manager, the patient (patient evaluation), and the quality assurance. Thieme Medical Publishers 333 Seventh Avenue, New York, NY 10001, USA.

  8. [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.

  9. Healthcare provider relational quality is associated with better self-management and less treatment burden in people with multiple chronic conditions

    Directory of Open Access Journals (Sweden)

    Eton DT

    2017-09-01

    Full Text Available David T Eton,1,2 Jennifer L Ridgeway,1,2 Mark Linzer,3 Deborah H Boehm,4 Elizabeth A Rogers,5 Kathleen J Yost,1,2 Lila J Finney Rutten,1,2 Jennifer L St Sauver,1,2 Sara Poplau,4 Roger T Anderson6 1Department of Health Sciences Research, 2Robert D and Patricia E Kern Center for the Science of Health Care Delivery, Mayo Clinic, Rochester, MN, 3Division of General Internal Medicine, Hennepin County Medical Center, 4Minneapolis Medical Research Foundation, 5Division of General Internal Medicine, University of Minnesota Medical School, Minneapolis, MN, 6Department of Public Health Sciences, University of Virginia School of Medicine, Charlottesville, VA, USA Purpose: Having multiple chronic conditions (MCCs can lead to appreciable treatment and self-management burden. Healthcare provider relational quality (HPRQ – the communicative and interpersonal skill of the provider – may mitigate treatment burden and promote self-management. The objectives of this study were to 1 identify the associations between HPRQ, treatment burden, and psychosocial outcomes in adults with MCCs, and 2 determine if certain indicators of HPRQ are more strongly associated than others with these outcomes.Patients and methods: This is a cross-sectional survey study of 332 people with MCCs. Patients completed a 7-item measure of HPRQ and measures of treatment and self-management burden, chronic condition distress, self-efficacy, provider satisfaction, medication adherence, and physical and mental health. Associations between HPRQ, treatment burden, and psychosocial outcomes were determined using correlational analyses and independent samples t-tests, which were repeated in item-level analyses to explore which indicators of HPRQ were most strongly associated with the outcomes.Results: Most respondents (69% were diagnosed with ≥3 chronic conditions. Better HPRQ was found to be associated with less treatment and self-management burden and better psychosocial outcomes (P<0

  10. Been There, Done That: The Experience of Acting as a Young Adult Mentor to Adolescents Living With Chronic Illness.

    Science.gov (United States)

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

    2017-10-01

    To explore the perceived benefits and challenges of acting as a young adult peer mentor to adolescents with chronic illness. A qualitative descriptive study, using interviews and a focus group, explored the perceptions of young adult peer mentors following participation in the iPeer2Peer program, a Skype-based peer-mentorship program for adolescents with chronic illness. Interviews and focus group data were transcribed and analyzed using inductive content analysis. Ten peer mentors (20.00 ± 1.49 years old, range 17-22 years; diagnosed with chronic pain [n = 4] or juvenile idiopathic arthritis [n = 6]) who mentored four mentees (±2.55 mentees, range = 1-10 mentees) participated. Four main categories were identified: social connection, personal growth, mentor role in mentee growth, and logistics of mentorship. Acting as a peer mentor online is a feasible and rewarding experience that supports the mentor's own illness self-management, social connection, and personal growth. © The Author 2017. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com

  11. Written online situational feedback via mobile phone to support self-management of chronic widespread pain: a usability study of a Web-based intervention

    Directory of Open Access Journals (Sweden)

    Eide Erlend

    2011-02-01

    Full Text Available Abstract Background This pretrial study aimed to develop and test the usability of a four-week Internet intervention delivered by a Web-enabled mobile phone to support self-management of chronic widespread pain. Methods The intervention included daily online entries and individualized written feedback, grounded in a mindfulness-based cognitive behavioral approach. The participants registered activities, emotions and pain cognitions three times daily using the mobile device. The therapist had immediate access to this information through a secure Web site. The situational information was used to formulate and send a personalized text message to the participant with the aim of stimulating effective self-management of the current situation. Six women participated and evaluated the experience. Results The intervention was rated as supportive, meaningful and user-friendly by the majority of the women. The response rate to the daily registration entries was high and technical problems were few. Conclusion The results indicate a feasible intervention. Web-applications are fast becoming standard features of mobile phones and interventions of this kind can therefore be more available than before. Trial registration number ClinicalTrials.gov: NCT01236209

  12. Efficacy of 'Tailored Physical Activity' or 'Chronic Pain Self-Management Program' on return to work for sick-listed citizens: design of a randomised controlled trial.

    Science.gov (United States)

    Andersen, Lotte Nygaard; Juul-Kristensen, Birgit; Roessler, Kirsten Kaya; Herborg, Lene Gram; Sørensen, Thomas Lund; Søgaard, Karen

    2013-01-23

    Pain affects quality of life and can result in absence from work. Treatment and/or prevention strategies for musculoskeletal pain-related long-term sick leave are currently undertaken in several health sectors. Moreover, there are few evidence-based guidelines for such treatment and prevention. The aim of this study is to evaluate the efficacy of 'Tailored Physical Activity' or 'Chronic Pain Self-Management Program' for sick-listed citizens with pain in the back and/or the upper body. This protocol describes the design of a parallel randomised controlled trial on the efficacy of 'Tailored Physical Activity' or a 'Chronic Pain Self-management Program' versus a reference group for sick-listed citizens with complaints of pain in the back or upper body. Participants will have been absent from work due to sick-listing for 3 to 9 weeks at the time of recruitment. All interventions will be performed at the 'Health Care Center' in the Sonderborg Municipality, and a minimum of 138 participants will be randomised into one of the three groups.All participants will receive 'Health Guidance', a (1.5-hour) individualised dialogue focusing on improving ways of living, based on assessments of risk behavior, motivation for change, level of self-care and personal resources. In addition, the experimental groups will receive either 'Tailored Physical Activity' (three 50-minute sessions/week over 10 weeks) or 'Chronic Pain Self-Management Program' (2.5-hours per week over 6 weeks). The reference group will receive only 'Health Guidance'.The primary outcome is the participants' sick-listed status at 3 and 12 months after baseline. The co-primary outcome is the time it takes to return to work. In addition, secondary outcomes include anthropometric measurements, functional capacity and self-reported number of sick days, musculoskeletal symptoms, general health, work ability, physical capacity, kinesiophobia, physical functional status, interpersonal problems and mental disorders. There

  13. 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...

  14. 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

  15. The Association of Health Literacy with Illness and Medication Beliefs among Patients with Chronic Obstructive Pulmonary Disease.

    Directory of Open Access Journals (Sweden)

    Minal S Kale

    Full Text Available Low health literacy is associated with low adherence to self-management in many chronic diseases. Additionally, health beliefs are thought to be determinants of self-management behaviors. In this study we sought to determine the association, if any, of health literacy and health beliefs among elderly individuals with COPD.We enrolled a cohort of patients with COPD from two academic urban settings in New York, NY and Chicago, IL. Health literacy was measured using the Short Test of Functional Health Literacy in Adults. Using the framework of the Self-Regulation Model, illness and medication beliefs were measured with the Brief Illness Perception Questionnaire (B-IPQ and Beliefs about Medications Questionnaire (BMQ. Unadjusted analyses, with corresponding Cohen's d effect sizes, and multiple logistic regression were used to assess the relationships between HL and illness and medication beliefs.We enrolled 235 participants, 29% of whom had low health literacy. Patients with low health literacy were more likely to belong to a racial minority group (p<0.001, not be married (p = 0.006, and to have lower income (p<0.001 or education (p<0.001. In unadjusted analyses, patients with low health literacy were less likely to believe they will always have COPD (p = 0.003, Cohen's d = 0.42, and were more likely to be concerned about their illness ((p = 0.04, Cohen's d = 0.17. In analyses adjusted for sociodemographic factors and other health beliefs, patients with low health literacy were less likely to believe that they will always have COPD (odds ratio [OR]: 0.78, 95% confidence interval [CI]: 0.65-0.94. In addition, the association of low health literacy with expressed concern about medications remained significant (OR: 1.20, 95% CI: 1.05-1.37 though the association of low health literacy with belief in the necessity of medications was no longer significant (OR: 0.92, 95% CI: 0.82-1.04.In this cohort of urban individuals with COPD, low health literacy was

  16. 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...

  17. 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...

  18. 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

  19. 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.

  20. 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

  1. The impact of social context on self-management in women living with HIV.

    Science.gov (United States)

    Webel, Allison R; Cuca, Yvette; Okonsky, Jennifer G; Asher, Alice K; Kaihura, Alphoncina; Salata, Robert A

    2013-06-01

    HIV self-management is central to the health of people living with HIV and is comprised of the daily tasks individuals employ to manage their illness. Women living with HIV are confronted with social context vulnerabilities that impede their ability to conduct HIV self-management behaviors, including demanding social roles, poverty, homelessness, decreased social capital, and limited access to health care. We examined the relationship between these vulnerabilities and HIV self-management in a cross-sectional secondary analysis of 260 women living with HIV from two U.S. sites. All social context variables were assessed using validated self-report scales. HIV Self-Management was assessed using the HIV Self-Management Scale that measures daily health practices, HIV social support, and the chronic nature of HIV. Data were analyzed using appropriate descriptive statistics and multivariable regression. Mean age was 46 years and 65% of participants were African-American. Results indicated that social context variables, particularly social capital, significantly predicted all domains of HIV self-management including daily health practices (F = 5.40, adjusted R(2) = 0.27, p traditional social roles of mother and employee on the daily health practices and the chronic nature of HIV domains of HIV self-management. Our data support the idea that women's social context influences their HIV self-management behavior. While social context has been previously identified as important, our data provide new evidence on which aspects of social context might be important targets of self-management interventions for women living with HIV. Working to improve social capital and to incorporate social roles into the daily health practices of women living with HIV may improve the health of this population. Copyright © 2013 Elsevier Ltd. All rights reserved.

  2. Are community-based nurse-led self-management support interventions effective in chronic patients? Results of a systematic review and meta-analysis.

    Directory of Open Access Journals (Sweden)

    Azzurra Massimi

    Full Text Available The expansion of primary care and community-based service delivery systems is intended to meet emerging needs, reduce the costs of hospital-based ambulatory care and prevent avoidable hospital use by the provision of more appropriate care. Great emphasis has been placed on the role of self-management in the complex process of care of patient with long-term conditions. Several studies have determined that nurses, among the health professionals, are more recommended to promote health and deliver preventive programs within the primary care context. The aim of this systematic review and meta-analysis is to assess the efficacy of the nurse-led self-management support versus usual care evaluating patient outcomes in chronic care community programs. Systematic review was carried out in MEDLINE, CINAHL, Scopus and Web of Science including RCTs of nurse-led self-management support interventions performed to improve observer reported outcomes (OROs and patients reported outcomes (PROs, with any method of communication exchange or education in a community setting on patients >18 years of age with a diagnosis of chronic diseases or multi-morbidity. Of the 7,279 papers initially retrieved, 29 met the inclusion criteria. Meta-analyses on systolic (SBP and diastolic (DBP blood pressure reduction (10 studies-3,881 patients and HbA1c reduction (7 studies-2,669 patients were carried-out. The pooled MD were: SBP -3.04 (95% CI -5.01--1.06, DBP -1.42 (95% CI -1.42--0.49 and HbA1c -0.15 (95% CI -0.32-0.01 in favor of the experimental groups. Meta-analyses of subgroups showed, among others, a statistically significant effect if the interventions were delivered to patients with diabetes (SBP or CVD (DBP, if the nurses were specifically trained, if the studies had a sample size higher than 200 patients and if the allocation concealment was not clearly defined. Effects on other OROs and PROs as well as quality of life remain inconclusive.

  3. A Framework to Assist Health Professionals in Recommending High-Quality Apps for Supporting Chronic Disease Self-Management: Illustrative Assessment of Type 2 Diabetes Apps.

    Science.gov (United States)

    Hale, Kelli; Capra, Sandra; Bauer, Judith

    2015-09-14

    This paper presents an approach to assist health professionals in recommending high quality apps for supporting chronic disease self-management. Most app reviews focus on popularity, aesthetics, functionality, usability, and information quality. There is no doubt these factors are important in selecting trustworthy apps which are appealing to users, but behavioral theory may be also be useful in matching the apps to user needs. The framework developed aims to be methodologically sound, capable of selecting popular apps which include content covered by evidence-based programs, consistent with behavioral theory, as well as a patient-centered approach for matching apps to patients' individual needs. A single disease-type 2 diabetes-was selected to illustrate how the framework can be applied as this was deemed to represent the types of strategies used in many chronic diseases. A systematic approach based on behavioral theory and recommendations from best practice guidelines was developed for matching apps to patients' needs. In March 2014, a series of search strategies was used to identify top-rated iPhone and Android health apps, representing 29 topics from five categories of type 2 diabetes self-management strategies. The topics were chosen from published international guidelines for the management of diabetes. The senior author (KH) assessed the most popular apps found that addressed these topics using the Behavioral Theory Content Survey (BTS), which is based on traditional behavioral theory. A tool to assist decision making when using apps was developed and trialed with health professionals for ease of use and understanding. A total of 14 apps were assessed representing all five topic categories of self-management. Total theoretical scores (BTS scores) were less than 50 on a 100-point scale for all apps. Each app scored less than 50% of the total possible BTS score for all four behavioral theories and for most of the 20 behavioral strategies; however, apps scored

  4. Exercise and self-management for people with chronic knee, hip or lower back pain: a cluster randomised controlled trial of clinical and cost-effectiveness. Study protocol.

    Science.gov (United States)

    Walsh, Nicola; Cramp, Fiona; Palmer, Shea; Pollock, Jon; Hampson, Lisa; Gooberman-Hill, Rachael; Green, Colin; Jones, Louise; Phillips, Sonia; Johnson, Liz; Hurley, Mike

    2013-12-01

    Chronic musculoskeletal pain and osteoarthritis can significantly limit the functional independence of individuals, and given that 25% of the population experience these problems, the socioeconomic impact is immense. Exercise and self-management have proven benefits for these conditions, but most trials tailor interventions for specific joints. Epidemiological data demonstrates that many older people with degenerative joint problems experience pain and functional difficulty in other joints, seeking further healthcare input when these present. Managing multiple joint presentations simultaneously could potentially reduce the need for repeat visits to healthcare professionals as advice is frequently the same for differing site presentations. This single-blind cluster randomised controlled trial will determine the clinical and cost-effectiveness of an exercise and self-management intervention delivered to people over-50 with either hip, knee or lower back pain, compared to 'standard' GP care. A qualitative analysis will also establish the acceptability of the intervention. 352 people with chronic degenerative musculoskeletal pain of the hip, knee or lower back will be recruited from primary care. GP surgeries will be randomised to either the intervention or control arms. Participants in the intervention arm will receive a 6-week group exercise and self-management programme facilitated by a physiotherapist in primary care. Participants allocated to the control arm will continue under 'standard' GP care. The primary outcome measure is the Dysfunction Index of the Short Musculoskeletal Functional Assessment (SMFA). Individual patient responses will be modelled using a mixed effects linear regression, allowing for the clustering effects. Resource use and related intervention costs will be estimated and broader resource use data will be collected using a version of the Client Service Receipt Inventory adapted for musculoskeletal relevance. In addition, a cost

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

    Directory of Open Access Journals (Sweden)

    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.

  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. Self-management and quality of life in chronic obstructive pulmonary disease (COPD): The mediating effects of positive affect.

    Science.gov (United States)

    Benzo, Roberto P; Abascal-Bolado, Beatriz; Dulohery, Megan M

    2016-04-01

    This study aimed to increase our understanding of general self-management (SM) abilities in COPD by determining if SM can predict disease specific quality of life (QoL), by investigating whether specific SM domains are significant in COPD and by exploring the mediating effect of the positive/negative affect in the association between SM and QoL. Cross-sectional study based on 292 patients with COPD. Measures included demographics, lung function, gait speed, health care utilization, positive/negative affect, SM abilities, breathlessness and disease specific QoL. We performed, correlation, multiple regression models and mediation analysis (positive/negative affect being mediator between SM and QoL association). After controlling for breathlessness, living alone, marital status, hospitalization history, age and lung function, SM related to QoL (pnegative affect ratio completely mediates the relationship of SM with QoL. SM is independently associated with disease specific QoL in COPD after adjustment significant covariates but positive/negative affect ratio completely mediates the relationship of SM with QoL. Measuring positive/negative affect and addressing investment behavior and self-efficacy are important in implementing COPD-SM programs. Copyright © 2015 The Authors. Published by Elsevier Ireland Ltd.. All rights reserved.

  9. Coping strategies used by poorly adherent patients for self-managing bipolar disorder.

    Science.gov (United States)

    Blixen, Carol; Levin, Jennifer B; Cassidy, Kristin A; Perzynski, Adam T; Sajatovic, Martha

    2016-01-01

    Bipolar disorder (BD) is a chronic mental illness associated with reduced quality of life, high rates of suicide, and high financial costs. Evidence indicates that psychosocial stress might play an important role in the onset and course of BD. The objective of this study was to address the gap between coping theory and the clinical use of coping strategies used to self-manage BD. In-depth interviews were conducted with a sample of 21 poorly adherent patients with BD. All interviews were audiotaped, transcribed verbatim, and analyzed using content analysis with an emphasis on dominant themes. Transcript-based analysis generated two major domains of coping strategies used to self-manage BD: 1) problem focused (altering eating habits, managing mood-stabilizing medications, keeping psychiatric appointments, seeking knowledge, self-monitoring, and socializing) and 2) emotion focused (distracting activities, denial, isolation, modifying/avoiding, helping others, and seeking social support). Participants used both types of coping strategies to deal with stressful situations brought about by the internal and external demands associated with self-management of BD. This qualitative study provided a first step in evaluating coping strategies as a possible mediator in the self-management of BD and has implications for health care providers. Being able to characterize an individual's coping behaviors can help patients modify or replace more maladaptive coping with better coping strategies in the self-management of this chronic mental illness.

  10. 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

  11. Self-management support for peritoneal dialysis patients.

    Science.gov (United States)

    Sarian, Mari; Brault, Diane; Perreault, Nathalie

    2012-01-01

    The increasing prevalence of chronic illnesses and kidney disease, in particular, makes it necessary to adopt new approaches towards their management (Wagner, 1998). Evidence suggests that promoting self-management improves the health status of peritoneal dialysis (PD) patients, as they manage upwards of 90% of their own care. Patients who are unable to self-manage suffer from various complications. This project proposes an intervention aimed at improving self-management skills among PD patients. To promote self-management in peritoneal dialysis patients. This is achieved through the following objectives: (a) develop an algorithm that can improve patients' ability to solve the specific problem of fluid balance maintenance, (b) develop an educational session for patients on how to use the algorithm, and (c) develop an implementation strategy in collaboration with the PD nurse. Three measures evaluate the effectiveness of the intervention. First, a telephone call log shows that participating patients call the clinic less to inquire about fluid balance maintenance. Next, a pre- and post-intervention knowledge test measures definite knowledge increase. Finally, a Patient Satisfaction Questionnaire reveals overall satisfaction with the intervention. This project, which proved beneficial to our patient population, could be duplicated in other clinics. The algorithm "How do I choose a dialysis bag" and the slides of the educational sessions can be shared with PD nurses across the country for the benefit of PD patients.

  12. Parent and Teacher Perceptions of the Impact of School Nurse Interventions on Children's Self-Management of Diabetes

    Science.gov (United States)

    Peery, Annette I.; Engelke, Martha Keehner; Swanson, Melvin S.

    2012-01-01

    Diabetes is a common chronic illness among school-age children. The school nurse collaborates with the student, parents, and teachers to help the child manage their diabetes effectively. Very little is known about the relationship between school nurse interventions and parent/teacher perceptions of the child's self-management. We examined this…

  13. The Self-management of Chronic Pain Through the Use of a Smartphone Application: An Interpretative Phenomenological Approach

    Directory of Open Access Journals (Sweden)

    Carolynn Greene

    2015-10-01

    Overall the qualitative accounts of experience revealed that the smartphone application allowed individuals to reflect upon their chronic pain experience in a way which was different to their normal everyday lives. It built up a more ecological and meaningful picture of the pain experience to the participants. The findings also raised some interesting issues surrounding the use of pain scales, the individuality of experience, and how smartphone applications are interpreted and integrated into everyday life. The findings have built upon previous research in this area by providing deeper accounts of insider experience, this enhances our understandings of smartphone application usage in those living with chronic pain.

  14. Use of a Smartphone for Improved Self-Management of Pulmonary Rehabilitation

    Directory of Open Access Journals (Sweden)

    A. Marshall

    2008-01-01

    Full Text Available Patients suffering from chronic respiratory disease need to follow a rehabilitative exercise programme, in order to self-manage their illness and improve quality of life. Adherence to the programme is highly dependent on professional support from a physiotherapist and hence declines when patients seek to self-manage in the home. A number of requirements were identified for a Smartphone-based application in which patients are supported remotely and given automatic feedback during exercise. An application is described which will improve adherence during pulmonary rehabilitation.

  15. Construct Validity of the Dutch Version of the 12-Item Partners in Health Scale: Measuring Patient Self-Management Behaviour and Knowledge in Patients with Chronic Obstructive Pulmonary Disease

    NARCIS (Netherlands)

    Lenferink, Anke; Effing, T.W.; Harvey, Peter; Battersby, Malcolm; Frith, Peter; van Beurden, Wendy; van der Palen, Jacobus Adrianus Maria

    2016-01-01

    Objective The 12-item Partners in Health scale (PIH) was developed in Australia to measure self-management behaviour and knowledge in patients with chronic diseases, and has undergone several changes. Our aim was to assess the construct validity and reliability of the latest PIH version in Dutch

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

    Directory of Open Access Journals (Sweden)

    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.

  17. Impact of a chronic disease self-management program on health care utilization in rural communities: a retrospective cohort study using linked administrative data.

    Science.gov (United States)

    Jaglal, Susan B; Guilcher, Sara J T; Hawker, Gillian; Lou, Wendy; Salbach, Nancy M; Manno, Michael; Zwarenstein, Merrick

    2014-05-01

    Internationally, chronic disease self-management programs (CDSMPs) have been widely promoted with the assumption that confident, knowledgeable patients practicing self-management behavior will experience improved health and utilize fewer healthcare resources. However, there is a paucity of published data supporting this claim and the majority of the evidence is based on self-report. We used a retrospective cohort study using linked administrative health data. Data from 104 tele-CDSMP participants from 13 rural and remote communities in the province of Ontario, Canada were linked to administrative databases containing emergency department (ED) and physician visits and hospitalizations. Patterns of health care utilization prior to and after participation in the tele-CDSMP were compared. Poisson Generalized Estimating Equations regression was used to examine the impact of the tele-CDSMP on health care utilization after adjusting for covariates. There were no differences in patterns of health care utilization before and after participating in the tele-CDSMP. Among participants ≤ 66 years, however, there was a 34% increase in physician visits in the 12 months following the program (OR = 1.34, 95% CI 1.11-1.61) and a trend for decreased ED visits in those >66 years (OR = 0.59, 95% CI 0.33-1.06). This is the first study to examine health care use following participation in the CDSMP in a Canadian population and to use administrative data to measure health care utilization. Similar to other studies that used self-report measures to evaluate health care use we found no differences in health care utilization before and after participation in the CDSMP. Future research needs to confirm our findings and examine the impact of the CDSMP on health care utilization in different age groups to help to determine whether these interventions are more effective with select population groups.

  18. 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…

  19. The association between health literacy and self-management abilities in adults aged 75 and older, and its moderators.

    Science.gov (United States)

    Geboers, Bas; de Winter, Andrea F; Spoorenberg, Sophie L W; Wynia, Klaske; Reijneveld, Sijmen A

    2016-11-01

    Low health literacy is an important predictor of poor health outcomes and well-being among older adults. A reason may be that low health literacy decreases older adults' self-management abilities. We therefore assessed the association between health literacy and self-management abilities among adults aged 75 and older, and the impact of demographic factors, socioeconomic factors, and health status on this association. We used data of 1052 older adults, gathered for a previously conducted randomized controlled trial on Embrace, an integrated elderly care model. These data pertained to health literacy, self-management abilities, demographic background, socioeconomic situation, and health status. Health literacy was measured by the validated three-item Brief Health Literacy Screening instrument. Self-management abilities were measured by the validated Self-Management Ability Scale (SMAS-30). After adjustment for confounders, self-management abilities were poorer in older adults with low health literacy (β = .34, p older adults than in low-educated older adults. Sex, age, living situation, income, presence of chronic illness, and mental health status did not moderate the association between health literacy and self-management abilities. Low health literacy is associated with poor self-management abilities in a wide range of older adults. Early recognition of low health literacy among adults of 75 years and older and interventions to improve health literacy might be very beneficial for older adults.

  20. [Chronic Disease Self-management Support for People with a Migrant Background: towards a Peer-led Group Program to Improve Equity in Health].

    Science.gov (United States)

    Zanoni, S; Gabriel, E; Salis Gross, C; Deppeler, M; Haslbeck, J

    2018-03-01

    Limited health literacy and language skills are barriers for people with a migrant background (PMB) to access health information and healthcare services, in particular for those living with chronic conditions. During the introduction of a peer-led Stanford chronic disease self-management course in Switzerland, special interest in the program as well as motivation of PMB was observed. In response, we examined if the program can be implemented in German for people with limited language skills. This explorative study is part of the evaluation study on introducing the adapted Stanford program in Switzerland and German-speaking Europe. Following the principles of Grounded Theory, semi-structured focus group and individual interviews were conducted with course participants, leaders and coordinators (n=30) and analyzed thematically. The focus was on the feasibility, satisfaction and course content. In principle, the program seems to have positive value for PMB, may work for them in German, have high relevance for everyday life and give an impetus for social integration. The need for and extent of modification of the program for PMB has to be further explored in order to make it more accessible for vulnerable groups. © Georg Thieme Verlag KG Stuttgart · New York.

  1. 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.

  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. The effectiveness of the teach-back method on adherence and self-management in health education for people with chronic disease: a systematic review.

    Science.gov (United States)

    Ha Dinh, Thi Thuy; Bonner, Ann; Clark, Robyn; Ramsbotham, Joanne; Hines, Sonia

    2016-01-01

    Chronic diseases are increasing worldwide and have become a significant burden to those affected by those diseases. Disease-specific education programs have demonstrated improved outcomes, although people do forget information quickly or memorize it incorrectly. The teach-back method was introduced in an attempt to reinforce education to patients. To date, the evidence regarding the effectiveness of health education employing the teach-back method in improved care has not yet been reviewed systematically. This systematic review examined the evidence on using the teach-back method in health education programs for improving adherence and self-management of people with chronic disease. Adults aged 18 years and over with one or more than one chronic disease.All types of interventions which included the teach-back method in an education program for people with chronic diseases. The comparator was chronic disease education programs that did not involve the teach-back method.Randomized and non-randomized controlled trials, cohort studies, before-after studies and case-control studies.The outcomes of interest were adherence, self-management, disease-specific knowledge, readmission, knowledge retention, self-efficacy and quality of life. Searches were conducted in CINAHL, MEDLINE, EMBASE, Cochrane CENTRAL, Web of Science, ProQuest Nursing and Allied Health Source, and Google Scholar databases. Search terms were combined by AND or OR in search strings. Reference lists of included articles were also searched for further potential references. Two reviewers conducted quality appraisal of papers using the Joanna Briggs Institute Meta-Analysis of Statistics Assessment and Review Instrument. Data were extracted using the Joanna Briggs Institute Meta-Analysis of Statistics Assessment and Review Instrument data extraction instruments. There was significant heterogeneity in selected studies, hence a meta-analysis was not possible and the results were presented in narrative form. Of

  5. Informal care and the self-management partnership: implications for Australian health policy and practice.

    Science.gov (United States)

    Essue, Beverley M; Jowsey, Tanisha; Jeon, Yun-Hee; Mirzaei, Masoud; Pearce-Brown, Carmen L; Aspin, Clive; Usherwood, Tim P

    2010-11-01

    The Serious and Continuing Illness Policy and Practice Study (SCIPPS) aims to improve the care and support for patients with chronic illness and their family carers. Here we describe the carers' contribution to the self-management partnership and discuss the policy and practice implications that are relevant to improving the support available for informal care in Australia. A secondary analysis of SCIPPS data. Fourteen carers of patients between 45 and 85 years with chronic heart failure, chronic obstructive pulmonary disease and diabetes were conveniently sampled from western Sydney and the Australian Capital Territory. Semi-structured interviews were conducted. Data were analysed using qualitative content analysis. Key roles that carers perform in the self-management partnership included: home helper; lifestyle coach; advocate; technical care manager; and health information interpreter. Two negative consequences of juggling these roles included: self-neglect and conflict. Rigid eligibility criteria limit carers' access to essential support programs which underestimates and undervalues their contributions to the self-management partnership. Support services should focus on the development of practical skills to perform the caregiving roles. In addition, health professionals require support to work more effectively with carers to minimise the conflict that can overshadow the care and self-management partnership.

  6. Sustaining self-management in diabetes mellitus.

    Science.gov (United States)

    Mitchell-Brown, Fay

    2014-01-01

    Successful management of diabetes depends on the individual's ability to manage and control symptoms. Self-management of diabetes is believed to play a significant role in achieving positive outcomes for patients. Adherence to self-management behaviors supports high-quality care, which reduces and delays disease complications, resulting in improved quality of life. Because self-management is so important to diabetes management and involves a lifelong commitment for all patients, health care providers should actively promote ways to maintain and sustain behavior change that support adherence to self-management. A social ecological model of behavior change (McLeroy, Bibeau, Steckler, & Glanz, 1988) helps practitioners provide evidence-based care and optimizes patients' clinical outcomes. This model supports self-management behaviors through multiple interacting interventions that can help sustain behavior change. Diabetes is a complex chronic disease; successful management must use multiple-level interventions.

  7. Healthy Reasoning: The Role of Effective Argumentation for Enhancing Elderly Patients' Self-management Abilities in Chronic Care.

    Science.gov (United States)

    Bigi, Sarah

    2014-01-01

    One of the biggest challenges for doctors working in chronic care is the correct management of the argumentation phases during the encounters with their patients. During these phases doctors should provide patients with acceptable reasons for being adherent to treatment and for changing certain unhealthy behaviors and lifestyles, something which is particularly difficult for elderly patients, for whom changing life long habits can be extremely hard. However, the medical literature on the subject of communication in the chronic care encounter shows lack of theoretical models and methodological approaches that can highlight which specific linguistic structures or elements in different communication styles favor or impede patient commitment, trust in the relationship and adherence to treatment. The contribution describes ongoing research on argumentative strategies in the encounter with diabetes patients. I describe one recently concluded research project on the argumentation phases of medical encounters in diabetes care, which highlighted critical areas in need of improvement. I also describe the design and aims of a new research project, aimed at testing the effectiveness and usability of certain argumentation schemes in the medical encounter.

  8. Computer technology for self-management: a scoping review.

    Science.gov (United States)

    Jacelon, Cynthia S; Gibbs, Molly A; Ridgway, John Ve

    2016-05-01

    The purpose of this scoping review of literature is to explore the types of computer-based systems used for self-management of chronic disease, the goals and success of these systems, the value added by technology integration and the target audience for these systems. Technology is changing the way health care is provided and the way that individuals manage their health. Individuals with chronic diseases are now able to use computer-based systems to self-manage their health. These systems have the ability to remind users of daily activities, and to help them recognise when symptoms are worsening and intervention is indicated. However, there are many questions about the types of systems available, the goals of these systems and the success with which individuals with chronic illness are using them. This is a scoping review in which the Cumulative Index of Nursing and Allied Health Literature, PubMed and IEEE Xplore databases were searched. A total of 303 articles were reviewed, 89 articles were read in-depth and 30 were included in the scoping review. The Substitution, Augmentation, Modification, Redefinition model was used to evaluate the value added by the technology integration. Research on technology for self-management was conducted in 13 countries. Data analysis identified five kinds of platforms on which the systems were based, some systems were focused on a specific disease management processes, others were not. For individuals to effectively use systems to maintain maximum wellness, the systems must have a strong component of self-management and provide the user with meaningful information regarding their health states. Clinicians should choose systems for their clients based on the design, components and goals of the systems. © 2016 John Wiley & Sons Ltd.

  9. Assessing the effect of culturally specific audiovisual educational interventions on attaining self-management skills for chronic obstructive pulmonary disease in Mandarin- and Cantonese-speaking patients: a randomized controlled trial.

    Science.gov (United States)

    Poureslami, Iraj; Kwan, Susan; Lam, Stephen; Khan, Nadia A; FitzGerald, John Mark

    2016-01-01

    Patient education is a key component in the management of chronic obstructive pulmonary disease (COPD). Delivering effective education to ethnic groups with COPD is a challenge. The objective of this study was to develop and assess the effectiveness of culturally and linguistically specific audiovisual educational materials in supporting self-management practices in Mandarin- and Cantonese-speaking patients. Educational materials were developed using participatory approach (patients involved in the development and pilot test of educational materials), followed by a randomized controlled trial that assigned 91 patients to three intervention groups with audiovisual educational interventions and one control group (pamphlet). The patients were recruited from outpatient clinics. The primary outcomes were improved inhaler technique and perceived self-efficacy to manage COPD. The secondary outcome was improved patient understanding of pulmonary rehabilitation procedures. Subjects in all three intervention groups, compared with control subjects, demonstrated postintervention improvements in inhaler technique (PCulturally appropriate educational interventions designed specifically to meet the needs of Mandarin and Cantonese COPD patients are associated with significantly better understanding of self-management practices. Self-management education led to improved proper use of medications, ability to manage COPD exacerbations, and ability to achieve goals in managing COPD. A relatively simple culturally appropriate disease management education intervention improved inhaler techniques and self-management practices. Further research is needed to assess the effectiveness of self-management education on behavioral change and patient empowerment strategies.

  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. Effectiveness of disease-specific self-management education on health outcomes in patients with chronic obstructive pulmonary disease: An updated systematic review and meta-analysis.

    Science.gov (United States)

    Wang, Tao; Tan, Jing-Yu; Xiao, Lily Dongxia; Deng, Renli

    2017-08-01

    To update a previously published systematic review on the effectiveness of self-management education (SME) for patients with chronic obstructive pulmonary disease (COPD). Electronic databases were accessed (from inception to July 2016) to find relevant randomized controlled trials. Studies that compared SME with routine methods of care in COPD patients were retrieved. Both data synthesis and descriptive analysis were used for outcome assessment (e.g. quality of life and healthcare utilization). Twenty-four studies were included. Data synthesis showed better quality of life among COPD patients receiving SME. Significant reductions in COPD-related hospital admissions and emergency department visits were identified in the SME group. SME may positively affect the reduction of COPD patients' emotional distress. No significant reduction in smoking rate and mortality rate was observed between groups. No clear evidence supports the improvement of pulmonary functions, dyspnea, and nutritional status in COPD patients with the use of SME. SME can be a useful strategy to improve quality of life and disease-specific knowledge in patients with COPD. It also reduces respiratory-related hospital admissions and emergency department visits in COPD patients. Inclusion of SME as one of the key components for the comprehensive management of COPD is encouraged. Copyright © 2017 Elsevier B.V. All rights reserved.

  12. Looking after yourself: Clinical understandings of chronic-care self-management strategies in rural and urban contexts of the United Kingdom and Australia

    Directory of Open Access Journals (Sweden)

    Susan Mary Carr

    2014-04-01

    Full Text Available Objectives: This article reports on the outcomes of two similar projects undertaken during 2011–2012 in Australia (Rural Northern New South Wales and the United Kingdom (Urban Northern United Kingdom that sought to identify the strategies that health professionals employ to actively involve patients with chronic conditions in the planning and delivery of their care. In particular, this study explored understandings and contexts of care that impacted on the participants’ practices. This study was informed by the global shift to partnership approaches in health policy and the growing imperative to deliver patient or client-centred care. Methods: An ethnomethodological design was used, as ethnomethodology does not dictate a set of research methods or procedures, but rather is congruent with any method that seeks to explore what people do in their routine everyday lives. Focus groups and interviews were employed to explore the strategies used by a range of primary health-care providers, such as general practitioners, nurses, social workers, diabetes educators, dieticians and occupational therapists, to support clients to effectively manage their own chronic conditions. Results: Data from both studies were synthesised and analysed thematically, with the themes reflecting the context, similarities and differences of the two studies that the participants felt had either facilitated or blocked their efforts to support their clients to adopt self-care strategies. Conclusion: Supporting patients/clients to engage in actively self-managing their health-care needs requires changes to clients’ and clinicians’ traditional perspectives on their roles. The barriers and enablers to supporting clients to manage their own health needs were similar across both locations and included tensions in role identity and functions, the discourse of health-care professionals as ‘experts’ who deliver care and their level of confidence in being facilitators who

  13. 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.

  14. 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...

  15. 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.

  16. Socio-ecological resources for diabetes self-management.

    Science.gov (United States)

    O'Dell, Kristi; O'Dell, Michael

    2006-04-01

    This study describes the utility of the brief Chronic Illness Resources Survey (CIRS) in a family medicine clinic. The brief CIRS is a 22-item scale that assesses support for self-management tasks common to chronic illnesses. The scale is based on socio-ecological theory and measures seven levels of socio-environmental support. The sample included 31 males and females aged 38 - 86 years with a diagnosis of diabetes who presented for care at a family medicine residency clinic. After scheduled office visits, patients completed the brief CIRS, demographic indicators, and brief medical information. The health care team, personal support, and media/policy subscales were rated the highest followed by family and friends, neighborhood, workplace, and community organizations. There were no significant differences in the t-tests between select demographic variables (gender, race, age, marital status, and work status) and CIRS total score. Females' higher total CIRS score was nearly statistically significant as compared to males' total CIRS score. The health care team is of primary importance in diabetic patient self-management, and so, the brief CIRS may be a useful rapid assessment instrument in a medical clinic setting where additional resources may be identified and recommended as indicated by the physician.

  17. The impact of an informational self-management intervention on the association between control and illness uncertainty before and psychological distress after radiotherapy

    NARCIS (Netherlands)

    Stiegelis, HE; Hagedoorn, M; Sanderman, R; Bennenbroek, FTC; Buunk, BP; Van den Bergh, ACM; Botke, G; Ranchor, AV

    Many studies have reported that cancer patients who show difficulties maintaining perceptions of control report more psychological distress than patients who are hi.-her in control. Besides perceptions of control, feelings of illness uncertainty have also been regarded as a predictor of

  18. Coping strategies used by poorly adherent patients for self-managing bipolar disorder

    Directory of Open Access Journals (Sweden)

    Blixen C

    2016-07-01

    Full Text Available Carol Blixen,1,2 Jennifer B Levin,2 Kristin A Cassidy,2 Adam T Perzynski,1 Martha Sajatovic2–4 1Center for Health Care Research and Policy, MetroHealth Medical Center, 2Department of Psychiatry, 3Department of Neurology, Neurological Institute, 4Department of Biostatistics & Epidemiology, University Hospitals Case Medical Center, Case Western Reserve University School of Medicine, Cleveland, OH, USA Background: Bipolar disorder (BD is a chronic mental illness associated with reduced quality of life, high rates of suicide, and high financial costs. Evidence indicates that psychosocial stress might play an important role in the onset and course of BD. Objective: The objective of this study was to address the gap between coping theory and the clinical use of coping strategies used to self-manage BD.Methods: In-depth interviews were conducted with a sample of 21 poorly adherent patients with BD. All interviews were audiotaped, transcribed verbatim, and analyzed using content analysis with an emphasis on dominant themes.Results: Transcript-based analysis generated two major domains of coping strategies used to self-manage BD: 1 problem focused (altering eating habits, managing mood-stabilizing medications, keeping psychiatric appointments, seeking knowledge, self-monitoring, and socializing and 2 emotion focused (distracting activities, denial, isolation, modifying/avoiding, helping others, and seeking social support. Participants used both types of coping strategies to deal with stressful situations brought about by the internal and external demands associated with self-management of BD.Conclusion: This qualitative study provided a first step in evaluating coping strategies as a possible mediator in the self-management of BD and has implications for health care providers. Being able to characterize an individual’s coping behaviors can help patients modify or replace more maladaptive coping with better coping strategies in the self-management of

  19. [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.

  20. 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...

  1. 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...

  2. 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.

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

    Science.gov (United States)

    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…

  4. 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

  5. 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.

  6. 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.

  7. Self-Management Patient Education and Weight Loss

    Science.gov (United States)

    Stombaugh, Angela M.

    2010-01-01

    Self-management of a disease is defined as "having or being able to obtain, the skills and resources necessary to best accommodate to the chronic disease and its consequences" (Holman & Lorig, 1992, p. 309). Self-management has been used in the management of several chronic conditions and this model may be useful in the management of weight loss.…

  8. 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.

  9. 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.

  10. 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

  11. Information therapy: The strategic role of prescribed information in disease self-management.

    Science.gov (United States)

    Mettler, Molly; Kemper, Donald W

    2006-01-01

    Imagine this: evidence-based medical information specifically written for and prescribed to a patient with chronic illness, targeted to that patient's specific "moment in care" and designed to help that patient manage his or her illness. Imagine "information therapy" built into every clinical encounter that a patient has with a physician or other health care service. Information therapy is defined as the timely prescription and availability of evidence-based health information to meet individuals' specific needs and support sound decision making. Information therapy is a new disease management tool that provides cost-effective disease management support to a much larger portion of the chronically ill population than is generally reached. This paper is a practical presentation of information therapy, its role in predictive modeling and disease self-management, and its potential for improving the outcomes of chronic care.

  12. Standardising the Lay: Logics of Change in Programs of Disease Self-management

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    Annegrete Juul Nielsen

    2012-11-01

    Full Text Available The health political discourse on self-care is dominated by the view that the selfmanaging patient represents a more democratic and patient-centric perspective, as he or she is believed to renegotiate the terms on which patient participation in health care has hitherto taken place. The self-managing patient is intended as a challenge to traditional medical authority by introducing lay methods of knowing disease. Rather than a meeting between authoritative professionals and vulnerable patients, the self-managing patient seeks to open up new spaces for a meeting between experts. The present paper questions these assumptions through an ethnographic exploration of a patient-led self-management program called the Chronic Disease Self-Management Program. The program is concerned with what its developers call the social and mental aspects of living with a chronic disease and uses trained patients as role models and program leaders. Drawing inspiration from Annemarie Mol’s term ‘logic’, we explore the rationale of ‘situations of selfmanagement’ and identify what we call a ‘logic of change’, which involves very specific ideas on how life with a chronic condition should be dealt with and directs attention towards particular manageable aspects of life with a chronic condition. This logic of change entails, we argue, a clash not between ‘medical’ and ‘lay’ forms of knowledge but between different logics or perceptions of how transformation can be achieved: through open-ended and ongoing reflection and experimentation in social settings or through standardised trajectories of change. Returning to the literature on lay forms of knowledge and illness perspectives, we question whether programs such as the Chronic Disease Self-Management Program – despite its apparent patient-centric perspective – reproduces classical hierarchical relations between lay and expert knowledge, albeit in new forms.

  13. A Middle-Range Explanatory Theory of Self-Management Behavior for Collaborative Research and Practice.

    Science.gov (United States)

    Blok, Amanda C

    2017-04-01

    To report an analysis of the concept of self-management behaviors. Self-management behaviors are typically associated with disease management, with frequent use by nurse researchers related to chronic illness management and by international health organizations for development of disease management interventions. A concept analysis was conducted within the context of Orem's self-care framework. Walker and Avant's eight-step concept analysis approach guided the analysis. Academic databases were searched for relevant literature including CIHAHL, Cochrane Databases of Systematic Reviews and Register of Controlled Trials, MEDLINE, PsycARTICLES and PsycINFO, and SocINDEX. Literature using the term "self-management behavior" and published between April 2001 and March 2015 was analyzed for attributes, antecedents, and consequences. A total of 189 journal articles were reviewed. Self-management behaviors are defined as proactive actions related to lifestyle, a problem, planning, collaborating, and mental support, as well as reactive actions related to a circumstantial change, to achieve a goal influenced by the antecedents of physical, psychological, socioeconomic, and cultural characteristics, as well as collaborative and received support. The theoretical definition and middle-range explanatory theory of self-management behaviors will guide future collaborative research and clinical practice for disease management. © 2016 Wiley Periodicals, Inc.

  14. 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.

  15. 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.

  16. Meso level influences on long term condition self-management: stakeholder accounts of commonalities and differences across six European countries.

    Science.gov (United States)

    Rogers, Anne; Vassilev, Ivaylo; Pumar, Maria J Jesús; Todorova, Elka; Portillo, Mari Carmen; Foss, Christina; Koetsenruijter, Jan; Ratsika, Nikoleta; Serrano, Manuel; Knutsen, Ingrid A Ruud; Wensing, Michel; Roukova, Poli; Patelarou, Evridiki; Kennedy, Anne; Lionis, Christos

    2015-07-08

    European countries are increasingly adopting systems of self -care support (SMS) for long term conditions which focus on enhancing individual, competencies, skills, behaviour and lifestyle changes. To date the focus of policy for engendering greater self- management in the population has been focused in the main on the actions and motivations of individuals. Less attention has been paid to how the broader influences relevant to SMS policy and practice such as those related to food production, distribution and consumption and the structural aspects and economics relating to physical exercise and governance of health care delivery systems might be implicated in the populations ability to self- manage. This study aimed to identify key informants operating with knowledge of both policy and practice related to SMS in order to explore how these influences are seen to impact on the self-management support environment for diabetes type 2. Ninety semi-structured interviews were conducted with key stakeholder informants in Bulgaria, Spain, Greece, Norway, Netherlands and UK. Interviews were transcribed and analysed using thematic and textual analysis. Stakeholders in the six countries identified a range of influences which shaped diabetes self-management (SM). The infrastructure and culture for supporting self- management practice is viewed as driven by political decision-makers, the socio-economic and policy environment, and the ethos and delivery of chronic illness management in formal health care systems. Three key themes emerged during the analysis of data. These were 1) social environmental influences on diabetes self-management 2) reluctance or inability of policy makers to regulate processes and environments related to chronic illness management 3) the focus of healthcare system governance and gaps in provision of self-management support (SMS). Nuances in the salience and content of these themes between partner countries related to the presence and articulation of

  17. 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.

  18. 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.

  19. 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.

  20. Group affiliation in self-management: support or threat to identity?

    Science.gov (United States)

    Bossy, Dagmara; Knutsen, Ingrid Ruud; Rogers, Anne; Foss, Christina

    2017-02-01

    Self-management is considered important in chronic illness, and contemporary health policy recommends participation in support groups for individuals with chronic conditions. Although withdrawal from or non-participation in support groups is an important problem, there is limited knowledge about individuals' own motivation for participation in or withdrawal from self-management support groups. To investigate how individuals with type 2 diabetes perceive participation in group-based self-management support. This is a qualitative focus group study using a semi-structured interview guide. Sixteen participants diagnosed with type 2 diabetes were included in the study. Individuals with and without group affiliations were mixed in three focus groups to trigger discussions. In the analysis, reoccurring themes of engagement and discussions between participants were focused within a theoretical frame of institutional logic. The focus groups are seen as social spaces where participants construct identity. Both participation and non-participation in group-based self-management support are associated with dealing with the stigma of having type 2 diabetes. Negotiations contribute to constructing an illness dignity as a response to the logic of moral responsibility for the disease. Contemporary policy contributes to societal understandings of individuals with type 2 diabetes as morally inadequate. Our study shows that group-based self-management support may counteract blame and contribute in negotiations of identity for individuals with type 2 diabetes. This mechanism makes participation in groups beneficial for some but stigma inducing for others. © 2016 The Authors. Health Expectations Published by John Wiley & Sons Ltd.

  1. Self-management support by final year nursing students: A correlational study of performance and person-related associated factors.

    Science.gov (United States)

    Duprez, Veerle; Beeckman, Dimitri; Verhaeghe, Sofie; Van Hecke, Ann

    2017-09-01

    Chronic conditions put a heavy burden on healthcare in every country. Supporting persons with a chronic illness to take an active role in the management of their condition is a core component in the Chronic Care Model. It implies confidence and good skills from professionals. To date, there is no evidence on final year nursing students' performance in supporting patients' self-management, nor on factors associated with this performance. To explore self-reported performance of supporting patients' self-management by final year nursing students, and person-related factors associated with this performance. A correlational multi-centre study of final year nursing students (N=256) from eight nursing schools. Students were recruited from a convenience sample of eight nursing schools. All final year students were invited to participate. Data were collected between January 2015 and May 2016 using self-administered validated questionnaires. Theoretical behavioural frameworks were used to select hypothesized associated factors for self-management support: self-efficacy to perform self-management support and socio-structural factors (Social Cognitive Theory); needs for autonomy, competence and relatedness, and patient-invested contingent self-esteem (Self-Determination Theory); and attitudes towards supporting patients' self-management (Theory of Planned Behaviour). Final year nursing students (N=256) reported an overall low level of performance in delivering self-management support during internship. Students lacked mainly competencies in collaborative goal setting and shared decision making. Students reported a significant gap between their confidence and their actual performance in self-management support (pLearning opportunities can be introduced in classroom activities and on internship. Copyright © 2017 Elsevier Ltd. All rights reserved.

  2. 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

  3. 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.

  4. 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

  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. Identifying and describing patients' learning experiences towards self-management of bipolar disorders: a phenomenological study.

    Science.gov (United States)

    Van den Heuvel, S C G H; Goossens, P J J; Terlouw, C; Van Achterberg, T; Schoonhoven, L

    2015-12-01

    Existing evidence suggest that patient education in promoting self-management strategies of bipolar disorder (BD) is effective. However, results across the full range of service users with BD vary. Learning experiences of service users look to be a crucial factor to take into account when designing, delivering, and evaluating effective interventions that promote self-management in chronic illness. What learning activities service users actually undertake themselves when self-managing BD that might explain varying success rates, and guide future self-management educational programmes has not been examined. Unlike previous studies that suggest that outcomes in self-management depend on individual learning activities, the current study found that learning to self-manage BD takes place in a social network that functions as a learning environment in which it is saved for service users to make mistakes and to learn from these mistakes. Especially, coping with the dormant fear of a recurrent episode and acknowledging the limitations of an individual approach are important factors that facilitate this learning process. Practitioners who provide patient education in order to promote self-management of BD should tailor future interventions that facilitate learning by reflecting on the own experiences of service users. Community psychiatric nurses should keep an open discussion with service users and caregivers, facilitate the use of a network, and re-label problems into learning situations where both play an active role in building mutual trust, thereby enhancing self-management of BD. Existing evidence suggest that self-management education of bipolar disorder (BD) is effective. However, why outcomes differ across the full range of service users has not been examined. This study describes learning experiences of service users in self-managing BD that provide a possible explanation for this varying effectiveness. We have conducted a phenomenological study via face

  8. 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.

  9. Assessing the effect of culturally specific audiovisual educational interventions on attaining self-management skills for chronic obstructive pulmonary disease in Mandarin- and Cantonese-speaking patients: a randomized controlled trial

    Directory of Open Access Journals (Sweden)

    Poureslami I

    2016-08-01

    Full Text Available Iraj Poureslami,1,2 Susan Kwan,3 Stephen Lam,4,5 Nadia A Khan,6,7 John Mark FitzGerald 8,9 1Respiratory Division, Department of Medicine, Faculty of Medicine, University of British Columbia, Vancouver, Canada; 2Department of Graduate Studies, Centre for Clinical Epidemiology and Evaluation, Vancouver Coastal Health Research Institute, Vancouver, Canada; 3Respiratory Department, Burnaby Hospital, University of British Columbia, Burnaby, Canada; 4Respiratory Division, University of British Columbia, Vancouver, Canada; 5Department of Integrative Oncology, BC Cancer Research Centre, Vancouver, Canada; 6Department of Internal Medicine, Faculty of Medicine, University of British Columbia, Vancouver, Canada; 7Department of Internal Medicine, Providence Health Care Authority, Vancouver, Canada; 8VGH Divisions of Respiratory Medicine, University of British Columbia, Vancouver, Canada; 9Respiratory Medicine, Vancouver Coastal Health Authority, Vancouver Coastal Health Research Institute, Institute for Heart and Lung Health, The Lung Centre, Gordon and Leslie Diamond Health Care Centre, Vancouver, Canada Background: Patient education is a key component in the management of chronic obstructive pulmonary disease (COPD. Delivering effective education to ethnic groups with COPD is a challenge. The objective of this study was to develop and assess the effectiveness of culturally and linguistically specific audiovisual educational materials in supporting self-management practices in Mandarin- and Cantonese-speaking patients. Methods: Educational materials were developed using participatory approach (patients involved in the development and pilot test of educational materials, followed by a randomized controlled trial that assigned 91 patients to three intervention groups with audiovisual educational interventions and one control group (pamphlet. The patients were recruited from outpatient clinics. The primary outcomes were improved inhaler technique and

  10. 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.

  11. 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...

  12. 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…

  13. 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

  14. 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

  15. 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…

  16. 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.

  17. 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

  18. 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.

  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. 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.

  1. 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

  2. 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.

  3. 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.

  4. The effectiveness of interventions to enhance self-management support competencies in the nursing profession: a systematic review.

    Science.gov (United States)

    Duprez, Veerle; Vandecasteele, Tina; Verhaeghe, Sofie; Beeckman, Dimitri; Van Hecke, Ann

    2017-08-01

    The aim of this study was to explore the effectiveness and effective components of training interventions to enhance nurses' competencies in self-management support in chronic care. The growing burden of chronic diseases puts an increasing focus on nurses' self-management support of people living with a chronic illness. The most effective method to train nurses' competencies in self-management support remains unclear. Systematic literature review. PubMed, CINAHL, Cochrane CENTRAL, EMBASE, Web of Science, ERIC and PsycARTICLES databases were searched up to August 2015. Eligible studies reported on training interventions to enhance chronic care self-management support competencies in nurses. Outcomes were defined as trainees' reactions to the training (level 1), changes in trainees' competencies (level 2) or changes in trainees' performance in practice (level 3) concerning self-management support. Risk of bias was assessed. Level 1 outcomes were synthesized narratively. Standardized mean differences were calculated per study for level 2 and 3 outcomes. In total, 25 studies were included. Twelve of these studies included level 1 outcomes, eight studies included level 2 outcomes and 10 studies included level 3 outcomes. Effect sizes in favour of training ranged from -0·36 - 1·56 (level 2) and from 0·06 - 5·56 (level 3). Theory-driven training interventions with time to practice, (video) feedback and follow-up generated the most training effects. Caution is needed due to the inconsistent study quality. To date, there is a knowledge gap concerning the most effective method to train nurses' competencies in self-management support. More well-designed, longitudinal studies are needed. © 2016 John Wiley & Sons Ltd.

  5. Disease Management: The Need for a Focus on Broader Self-Management Abilities and Quality of Life.

    Science.gov (United States)

    Cramm, Jane Murray; Nieboer, Anna Petra

    2015-08-01

    The study objective was to investigate long-term effects of disease management programs (DMPs) on (1) health behaviors (smoking, physical exercise); (2) self-management abilities (self-efficacy, investment behavior, initiative taking); and (3) physical and mental quality of life among chronically ill patients. The study also examined whether (changes in) health behaviors and self-management abilities predicted quality of life. Questionnaires were sent to all 5076 patients participating in 18 Dutch DMPs in 2010 (T0; 2676 [53%] respondents). Two years later (T1), questionnaires were sent to 4350 patients still participating in DMPs (1722 [40%] respondents). Structured interviews were held with the 18 DMP project leaders. DMP implementation improved patients' health behavior and physical quality of life, but mental quality of life and self-management abilities declined over time. Changes in patients' investment behavior predicted physical quality of life at T1 (Pquality of life at T1. The long-term benefits of these DMPs include successful improvement of chronically ill patients' health behaviors and physical quality of life. However, these programs were not able to improve or maintain broader self-management abilities or mental quality of life, highlighting the need to focus on these abilities and overall quality of life. As coproducers of care, patients should be stimulated and enabled to manage their health and quality of life.

  6. PKU Self-Management Timeline

    Science.gov (United States)

    ... about pku UW PKU Clinic News & Events PKU Self-Management Timeline This timeline is also available as an ... Acrobat file. Click here to download. The PKU Self- Management timeline is included to provide long-term view ...

  7. 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.

  8. 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.

  9. 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.

  10. 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

  11. 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

  12. 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

  13. Self-management priority setting and decision-making in adults with multimorbidity: a narrative review of literature.

    Science.gov (United States)

    Bratzke, Lisa C; Muehrer, Rebecca J; Kehl, Karen A; Lee, Kyoung Suk; Ward, Earlise C; Kwekkeboom, Kristine L

    2015-03-01

    The purpose of this narrative review was to synthesize current research findings related to self-management, in order to better understand the processes of priority setting and decision-making among adults with multimorbidity. A narrative literature review was undertaken, synthesizing findings from published, peer-reviewed empirical studies that addressed priority setting and/or decision-making in self-management of multimorbidity. A search of PubMed, PsychINFO, CINAHL and SocIndex databases was conducted from database inception through December 2013. References lists from selected empirical studies and systematic reviews were evaluated to identify any additional relevant articles. Full text of potentially eligible articles were reviewed and selected for inclusion if they described empirical studies that addressed priority setting or decision-making in self-management of multimorbidity among adults. Two independent reviewers read each selected article and extracted relevant data to an evidence table. Processes and factors of multimorbidity self-management were identified and sorted into categories of priority setting, decision-making, and facilitators/barriers. Thirteen articles were selected for inclusion; most were qualitative studies describing processes, facilitators, and barriers of multimorbidity self-management. The findings revealed that patients prioritize a dominant chronic illness and re-prioritize over time as conditions and treatments change; that multiple facilitators (e.g. support programs) and barriers (e.g. lack of financial resources) impact individuals' self-management priority setting and decision-making ability; as do individual beliefs, preferences, and attitudes (e.g., perceived personal control, preferences regarding treatment). Health care providers need to be cognizant that individuals with multimorbidity engage in day-to-day priority setting and decision-making among their multiple chronic illnesses and respective treatments. Researchers

  14. 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. 

  15. 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.

  16. 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.

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

    Science.gov (United States)

    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.

  18. 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

  19. 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

  20. 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

  1. 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

  2. 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

  3. 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

  4. 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.

  5. Experience of hypertensive patients with self-management of health care.

    Science.gov (United States)

    Balduino, Anice de Fátima Ahmad; Mantovani, Maria de Fátima; Lacerda, Maria Ribeiro; Marin, Maria José Sanches; Wal, Marilene Loewen

    2016-11-01

    The aim of this study was to interpret how hypertensive patients experience health care self-management. Hypertension is one of the most prevalent chronic diseases worldwide. The involvement of individuals in the management of their health care to treat this disease is fundamental, with aid and advice from healthcare professionals, especially nurses, so that hypertensive patients can effectively self-manage their health care. Qualitative study. Hypertensive patients were recruited using theoretical sampling. The study sample consisted of 28 hypertensive patients aged 18-59 years who were registered in the e-Health programme of the Ministry of Health. Data were collected and analyzed between September 2012-October 2014 using a semi-structured interview based on the methodological framework of the constructivist grounded theory. The participants' statements depicted an outline of their experience with the disease: the beginning of the illness; understanding the disease process; incorporating behaviour for self-management of the disease; experiencing attitudes and actions in the control and treatment of the disease; and being treated in the public healthcare system. A central phenomenon emerged, namely hypertensive patients' experience of self-management of health care. This phenomenon has paths, actions and interactions. When patients discover that they have the disease and become aware of the disease process, they assume the identity of being hypertensive and become proactive in their health care and in living with their families and in communities. © 2016 John Wiley & Sons Ltd.

  6. Self-management in patients with psoriasis

    Directory of Open Access Journals (Sweden)

    Pathak SN

    2014-07-01

    Full Text Available Swetha Narahari Pathak,1 Pauline L Scott,1 Cameron West,1 Steven R Feldman,1–3 1Center for Dermatology Research, Departments of Dermatology, 2Center for Dermatology Research, Departments of Pathology, 3Public Health Sciences, Wake Forest School of Medicine, Winston-Salem, NC, USA Abstract: Psoriasis is a chronic inflammatory disorder effecting the skin and joints. Additionally, multiple comorbidities exist, including cardiovascular, metabolic, and psychiatric. The chronic nature of psoriasis is often frustrating for both patients and physicians alike. Many options for treatment exist, though successful disease management rests largely on patients through the application of topical corticosteroids, Vitamin D analogs, and calcineurin inhibitors, amongst others and the administration of systemic medications such as biologics and methotrexate. Phototherapy is another option that also requires active participation from the patient. Many barriers to effective self-management of psoriasis exist. Successful treatment requires the establishment of a strong doctor-patient relationship and patient empowerment in order to maximize adherence to a treatment regimen and improve outcomes. Improving patient adherence to treatment is necessary in effective self-management. Many tools exist to educate and empower patients, including online sources such as the National Psoriasis Foundation and online support group, Talk Psoriasis, amongst others. Effective self management is critical in decreasing the physical burden of psoriasis and mitigating its multiple physical, psychological, and social comorbidities, which include obesity, cardiovascular disease, alcohol dependence, depression, anxiety, and social anxiety. Keywords: psoriasis, adherence, self management, compliance

  7. 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.

  8. 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.

  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. 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. 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

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

    Science.gov (United States)

    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.

  13. 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.

  14. 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.

  15. 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.

  16. The role of comorbidities in patients' hypertension self-management.

    Science.gov (United States)

    Fix, Gemmae M; Cohn, Ellen S; Solomon, Jeffrey L; Cortés, Dharma E; Mueller, Nora; Kressin, Nancy R; Borzecki, Ann; Katz, Lois A; Bokhour, Barbara G

    2014-06-01

    We sought to understand barriers to hypertension self-management in patients with hypertension and comorbidities. We conducted semi-structured, qualitative interviews with 48 patients with uncontrolled hypertension and at least one comorbidity to learn about beliefs and behaviors that might affect hypertension self-management. Using a grounded theory strategy, we analyzed interview transcripts detailing patients' hypertension self-management behaviors vis-à-vis a framework including Explanatory Models-a patient's understanding of the pathophysiology, cause, course, treatment, and severity of an illness, such as hypertension. We identified four factors that interfered with hypertension self-management. (1) Interdependence: Participants saw hypertension as interconnected to their comorbidities and subsequently had difficulty separating information about their illnesses. (2) Low priority: Compared to other conditions, participants assigned hypertension a lower priority. (3) Conflicts: Participants struggled with conflicts between hypertension self-management practices and those for comorbidities. (4) Managing multiple medications: Polypharmacy led to patients' confusion and concern about taking medications as prescribed. Participants did not experience hypertension as a discreet clinical condition; rather, they self-managed hypertension concurrently with other conditions, leading to a breakdown in hypertension self-management. We provide strategies to address each of the four barriers to better equip providers in addressing their clinically salient concerns.

  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. Patient factors that influence clinicians' decision making in self-management support : A clinical vignette study

    NARCIS (Netherlands)

    Bos-Touwen, Irene D.; Trappenburg, Jaap C A; Van Der Wulp, Ineke; Schuurmans, Marieke J.; De Wit, Niek J.

    2017-01-01

    BACKGROUND AND AIM: Self-management support is an integral part of current chronic care guidelines. The success of self-management interventions varies between individual patients, suggesting a need for tailored self-management support. Understanding the role of patient factors in the current

  1. Definition of a COPD self-management intervention: International Expert Group consensus

    NARCIS (Netherlands)

    Effing, T.W.; Vercoulen, Jan H.; Bourbeau, Jean; Trappenburg, Jaap C.A.; Lenferink, Anke; Cafarella, Paul; Coultas, David; Meek, Paula; van der Valk, Paul; Bischoff, Erik W.M.A.; Bucknall, Christine E.; Dewan, Naresh A.; Early, Frances; Fan, Vincent; Frith, Peter; Janssen, Daisy J.A.; Mitchell, Katy; Morgan, Mike; Nici, Linda; Patel, Irem; Walters, Haydn; Rice, Kathryn L.; Singh, Sally J.; ZuWallack, Richard; Benzo, Roberto; Goldstein, Roger S.; Partridge, Martyn R.; van der Palen, Jacobus Adrianus Maria

    2016-01-01

    There is an urgent need for consensus on what defines a chronic obstructive pulmonary disease (COPD) self-management intervention. We aimed to obtain consensus regarding the conceptual definition of a COPD self-management intervention by engaging an international panel of COPD self-management

  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. 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.

  5. 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.

  6. 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.

  7. 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

  8. 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.

  9. Perceptions of Adolescents with Overweight and Obesity for the Development of User-Centered Design Self-Management Tools within the Context of the Chronic Care Model: A Qualitative Study.

    Science.gov (United States)

    Knoblock-Hahn, Amy L; Wray, Ricardo; LeRouge, Cynthia M

    2016-06-01

    The Chronic Care Model (CCM) is helpful to illustrate multiple levels of influence in the management of chronic disease, such as overweight and obesity in adolescents. Unfortunately, various constraints create gaps in the management process activities performed within the CCM. Consumer health technologies (CHT) may serve as a linkage between adolescents with overweight or obesity, their parents, and their pediatricians. To conduct formative research to qualitatively identify views of adolescents with overweight and obesity on use of consumer health technologies to manage weight loss across chronic care management settings. As part of a multi-perspective qualitative study, 10 focus groups were conducted with adolescents with overweight and obesity. Forty-eight adolescents (15 male, 33 female) aged 12 to 17 years who were current participants of an intensive lifestyle change camp in the summer of 2012 participated in focus groups. All adolescents were classified as overweight (21%) or obese (79%) according to body mass index (BMI) for age charts published by the Centers for Disease Control and Prevention. All focus groups were recorded, transcribed verbatim, and checked for accuracy. Predefined and open coding were used to analyze transcripts for emerging themes. Adolescents perceive CHT, with its functional requirements of assistance with restaurant food selection, teaching cooking skills, and providing encouragement and motivation, to be helpful with overweight and obesity self-management. Desired features to carry out these functional requirements included avatars, self-monitoring capabilities, social networking, and rewards. Our findings largely agree with previously reported parental perceptions of the benefit of CHT for adolescent overweight and obesity self-management and strengthen support for the design and implementation of CHT within the CCM. Copyright © 2016 Academy of Nutrition and Dietetics. Published by Elsevier Inc. All rights reserved.

  10. 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....

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

    Directory of Open Access Journals (Sweden)

    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.

  13. 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...

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

    Science.gov (United States)

    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

  15. 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.

  16. 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

  17. 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

  18. Finding Ways to Lift Barriers to Care for Chronic Pain Patients: Outcomes of Using Internet-Based Self-Management Activities to Reduce Pain and Improve Quality of Life.

    Science.gov (United States)

    Rod, Kevin

    2016-01-01

    Background. Chronic pain is prevalent, disabling, costly, and undertreated. There is clearly a need to improve patient understanding of ways to manage their pain. Internet-based programs are continually being developed to facilitate mental health improvement, providing tailored content for patients to manage their pain, anxiety, and depression. Objective. To evaluate the impact of Internet-based patient self-management education and activities on patients' pain, anxiety, and quality of life in patients who could not access multidisciplinary pain management. Design. Observational study. Subjects. Two hundred (200) patients (61% females, 39% males, between 18 and 75 years old) from one community pain clinic in Toronto, Canada (Toronto Poly Clinic), participated. Patients had moderate to severe pain, depression, and anxiety. These patients committed to study from a group of 515 patients with chronic noncancer pain of different origins who were stable on their levels of pain, anxiety, and depression for 12 consecutive months before start of study and could not afford noninsured treatment modalities like physiotherapy, psychology, nutrition, or exercise therapy consultation. Methods. Patients were encouraged to visit two Internet sites (a blog and Twitter postings) for educational postings written by the author about exercise, nutrition, mindfulness meditation, disease management methods, evidence-based supplements, daily relaxation exercises, and overall self-management methods 15 minutes per day for six months. Patients were also encouraged to share their ideas and comments on a blog. Activity logs were kept by patients and reviewed by physician at follow-up visits. Compliance was encouraged via weekly email reminders and phone calls during the observation period. Results. Modest improvements were noted in pain, anxiety, depression, and quality of life. Of the patients with moderate or severe pain before treatment, 45% reported mild levels of pain after treatment

  19. Finding Ways to Lift Barriers to Care for Chronic Pain Patients: Outcomes of Using Internet-Based Self-Management Activities to Reduce Pain and Improve Quality of Life

    Directory of Open Access Journals (Sweden)

    Kevin Rod

    2016-01-01

    Full Text Available Background. Chronic pain is prevalent, disabling, costly, and undertreated. There is clearly a need to improve patient understanding of ways to manage their pain. Internet-based programs are continually being developed to facilitate mental health improvement, providing tailored content for patients to manage their pain, anxiety, and depression. Objective. To evaluate the impact of Internet-based patient self-management education and activities on patients’ pain, anxiety, and quality of life in patients who could not access multidisciplinary pain management. Design. Observational study. Subjects. Two hundred (200 patients (61% females, 39% males, between 18 and 75 years old from one community pain clinic in Toronto, Canada (Toronto Poly Clinic, participated. Patients had moderate to severe pain, depression, and anxiety. These patients committed to study from a group of 515 patients with chronic noncancer pain of different origins who were stable on their levels of pain, anxiety, and depression for 12 consecutive months before start of study and could not afford noninsured treatment modalities like physiotherapy, psychology, nutrition, or exercise therapy consultation. Methods. Patients were encouraged to visit two Internet sites (a blog and Twitter postings for educational postings written by the author about exercise, nutrition, mindfulness meditation, disease management methods, evidence-based supplements, daily relaxation exercises, and overall self-management methods 15 minutes per day for six months. Patients were also encouraged to share their ideas and comments on a blog. Activity logs were kept by patients and reviewed by physician at follow-up visits. Compliance was encouraged via weekly email reminders and phone calls during the observation period. Results. Modest improvements were noted in pain, anxiety, depression, and quality of life. Of the patients with moderate or severe pain before treatment, 45% reported mild levels of pain

  20. 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)

  1. 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...

  2. 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.

  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. Evidence for Therapeutic Patient Education Interventions to Promote Cardiovascular Patient Self-Management: A Scientific Statement for Healthcare Professionals From the American Heart Association.

    Science.gov (United States)

    Barnason, Susan; White-Williams, Connie; Rossi, Laura P; Centeno, Mae; Crabbe, Deborah L; Lee, Kyoung Suk; McCabe, Nancy; Nauser, Julie; Schulz, Paula; Stamp, Kelly; Wood, Kathryn

    2017-06-01

    The burden of cardiovascular disease as a chronic illness increasingly requires patients to assume more responsibility for their self-management. Patient education is believed to be an essential component of cardiovascular care; however, there is limited evidence about specific therapeutic patient education approaches used and the impact on patient self-management outcomes. An integrative review of the literature was conducted to critically analyze published research studies of therapeutic patient education for self-management in selected cardiovascular conditions. There was variability in methodological approaches across settings and disease conditions. The most effective interventions were tailored to individual patient needs, used multiple components to improve self-management outcomes, and often used multidisciplinary approaches. This synthesis of evidence expands the base of knowledge related to the development of patient self-management skills and provides direction for more rigorous research. Recommendations are provided to guide the implementation of therapeutic patient education in clinical practice and the design of comprehensive self-management interventions to improve outcomes for cardiovascular patients. © 2017 American Heart Association, Inc.

  5. 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.

  6. 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

  7. 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.

  8. 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

  9. 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…

  10. 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…

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

    Science.gov (United States)

    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…

  12. 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

  13. 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…

  14. 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

  15. 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,…

  16. 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…

  17. 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.

  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. 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

  1. 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...

  2. 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.

  3. 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.

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

    Science.gov (United States)

    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.

  5. 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

  6. 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

  7. Self-management through shame

    DEFF Research Database (Denmark)

    Staunæs, Dorthe; Bjerg, Helle

    2011-01-01

    of management of self-management in two ways. Firstly, by thinking management of self-management trough concepts from what has become known as the affective turn. Secondly, by illustrating the precise mechanisms of management of self-management in every day life and thereby pointing to how management of self...... to recognition, but is also linked to the production of shame or at least potential shame. This argument is developed theoretically from Brian Massumi's theory on affectivity and intensity combined with Silvan Tomkins's theory of shame as the most self-reflexive affect of all affects. In order to exemplify......  Critical studies on management of self-management and governmentality have primarily been occupied with the production of identities, subject positions and the reflexive elements of self-management. The aim of this article is to challenge and contribute to the field of critical studies...

  8. 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.

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

    Directory of Open Access Journals (Sweden)

    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.

  10. 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.

  11. 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.

  12. 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.

  13. Application of a theoretical framework to foster a cardiac-diabetes self-management programme.

    Science.gov (United States)

    Wu, C-J Jo; Chang, A M

    2014-09-01

    This paper analyses and illustrates the application of Bandura's self-efficacy construct to an innovative self-management programme for patients with both type 2 diabetes and coronary heart disease. Using theory as a framework for any health intervention provides a solid and valid foundation for aspects of planning and delivering such an intervention; however, it is reported that many health behaviour intervention programmes are not based upon theory and are consequently limited in their applicability to different populations. The cardiac-diabetes self-management programme has been specifically developed for patients with dual conditions with the strategies for delivering the programme based upon Bandura's self-efficacy theory. This patient group is at greater risk of negative health outcomes than that with a single chronic condition and therefore requires appropriate intervention programmes with solid theoretical foundations that can address the complexity of care required. The cardiac-diabetes self-management programme has been developed incorporating theory, evidence and practical strategies. This paper provides explicit knowledge of the theoretical basis and components of a cardiac-diabetes self-management programme. Such detail enhances the ability to replicate or adopt the intervention in similar or differing populations and/or cultural contexts as it provides in-depth understanding of each element within the intervention. Knowledge of the concepts alone is not sufficient to deliver a successful health programme. Supporting patients to master skills of self-care is essential in order for patients to successfully manage two complex, chronic illnesses. Valuable information has been provided to close the theory-practice gap for more consistent health outcomes, engaging with patients for promoting holistic care within organizational and cultural contexts. © 2014 International Council of Nurses.

  14. Construct Validity of the Dutch Version of the 12-Item Partners in Health Scale: Measuring Patient Self-Management Behaviour and Knowledge in Patients with Chronic Obstructive Pulmonary Disease.

    Directory of Open Access Journals (Sweden)

    Anke Lenferink

    Full Text Available The 12-item Partners in Health scale (PIH was developed in Australia to measure self-management behaviour and knowledge in patients with chronic diseases, and has undergone several changes. Our aim was to assess the construct validity and reliability of the latest PIH version in Dutch COPD patients.The 12 items of the PIH, scored on a self-rated 9-point Likert scale, are used to calculate total and subscale scores (knowledge; coping; recognition and management of symptoms; and adherence to treatment. We used forward-backward translation of the latest version of the Australian PIH to define a Dutch PIH (PIH(Du. Mokken Scale Analysis and common Factor Analysis were performed on data from a Dutch COPD sample to investigate the psychometric properties of the Dutch PIH; and to determine whether the four-subscale solution previously found for the original Australian PIH could be replicated for the Dutch PIH.Two subscales were found for the Dutch PIH data (n = 118; 1 knowledge and coping; 2 recognition and management of symptoms, adherence to treatment. The correlation between the two Dutch subscales was 0.43. The lower-bound of the reliability of the total scale equalled 0.84. Factor analysis indicated that the first two factors explained a larger percentage of common variance (39.4% and 19.9% than could be expected when using random data (17.5% and 15.1%.We recommend using two PIH subscale scores when assessing self-management in Dutch COPD patients. Our results did not support the four-subscale structure as previously reported for the original Australian PIH.

  15. Construct Validity of the Dutch Version of the 12-Item Partners in Health Scale: Measuring Patient Self-Management Behaviour and Knowledge in Patients with Chronic Obstructive Pulmonary Disease.

    Science.gov (United States)

    Lenferink, Anke; Effing, Tanja; Harvey, Peter; Battersby, Malcolm; Frith, Peter; van Beurden, Wendy; van der Palen, Job; Paap, Muirne C S

    2016-01-01

    The 12-item Partners in Health scale (PIH) was developed in Australia to measure self-management behaviour and knowledge in patients with chronic diseases, and has undergone several changes. Our aim was to assess the construct validity and reliability of the latest PIH version in Dutch COPD patients. The 12 items of the PIH, scored on a self-rated 9-point Likert scale, are used to calculate total and subscale scores (knowledge; coping; recognition and management of symptoms; and adherence to treatment). We used forward-backward translation of the latest version of the Australian PIH to define a Dutch PIH (PIH(Du)). Mokken Scale Analysis and common Factor Analysis were performed on data from a Dutch COPD sample to investigate the psychometric properties of the Dutch PIH; and to determine whether the four-subscale solution previously found for the original Australian PIH could be replicated for the Dutch PIH. Two subscales were found for the Dutch PIH data (n = 118); 1) knowledge and coping; 2) recognition and management of symptoms, adherence to treatment. The correlation between the two Dutch subscales was 0.43. The lower-bound of the reliability of the total scale equalled 0.84. Factor analysis indicated that the first two factors explained a larger percentage of common variance (39.4% and 19.9%) than could be expected when using random data (17.5% and 15.1%). We recommend using two PIH subscale scores when assessing self-management in Dutch COPD patients. Our results did not support the four-subscale structure as previously reported for the original Australian PIH.

  16. The short-term effects of a body awareness program : better self-management of health problems for individuals with chronic a-specific psychosomatic symptoms

    NARCIS (Netherlands)

    Landsman-Dijkstra, Jeanet J. A.; van Wijck, R; Groothoff, JW; Rispens, P

    A three-day residential Body Awareness Program (BAP) was developed to teach people with Chronic A-specific Psychosomatic Symptoms (CAPS) to react adequately to disturbances of the balance between a daily workload and the capacity to deal with it. The short-term effects of the program for people with

  17. The short-term effects of a body awareness program : better self-management of health problems for individuals with chronic a-specific psychosomatic symptoms

    NARCIS (Netherlands)

    Landsman-Dijkstra, Jeanet J. A.; van Wijck, R; Groothoff, JW; Rispens, P

    2004-01-01

    A three-day residential Body Awareness Program (BAP) was developed to teach people with Chronic A-specific Psychosomatic Symptoms (CAPS) to react adequately to disturbances of the balance between a daily workload and the capacity to deal with it. The short-term effects of the program for people with

  18. Diabetes self-management, depressive symptoms, quality of life and metabolic control in youth with type 1 diabetes in China.

    Science.gov (United States)

    Guo, Jia; Whittemore, Robin; Grey, Margaret; Wang, Jing; Zhou, Zhi-Guang; He, Guo-Ping

    2013-01-01

    To assess diabetes self-management, depressive symptoms, quality of life and metabolic control in a cohort of youth with type 1 diabetes in mainland China. Predictors of self-management and depressive symptoms were also explored. Studies have shown that adaptation to childhood chronic illness is important in determining outcomes. Few studies have been reported on the behavioural, psychosocial and physiological adaptation processes and outcomes in Chinese youth with type 1 diabetes. This is a cross-sectional study as part of a multi-site longitudinal descriptive study. Data for this report were collected at baseline. A convenience sample of 136 eligible youth was recruited during follow-up visits in hospitals in 14 major cities of Hunan Province (located in central southern mainland China) from July 2009-October 2010. Data were collected on socio-demographic background, clinical characteristics, diabetes self-management, depressive symptoms, quality of life and metabolic control. Diabetes self-management was lower in Chinese youth compared with a US cohort and was associated with insulin treatment regimen, treatment location, depressive symptoms and gender. A total of 17·6% of youth reported high depressive symptoms, and depressive symptoms were correlated with family annual revenue, school attendance, peer relationship and parent-child relationship. The mean score of global satisfaction with quality of life was 17·14 ± 3·58. The mean HbA1c was 9·68%. Living with type 1 diabetes poses considerable challenges, and Chinese youth report lower self-management than US youth and high depressive symptoms. Metabolic control and quality of life were sub-optimal. More clinic visits, treatment for high depressive symptoms and an intensive insulin regimen may improve diabetes self-management for youth with type 1 diabetes in China. Culturally appropriate interventions aimed at helping them adapt to living with the disease and improving outcomes are urgently needed. © 2012

  19. Content and characteristics of goals created during a self-management intervention for people with epilepsy.

    Science.gov (United States)

    Walker, Elizabeth Reisinger; Wexler, Bethany; Dilorio, Colleen; Escoffery, Cam; McCarty, Frances; Yeager, Katherine A

    2009-12-01

    Goals are presented in the chronic illness literature as effective strategies to help people adopt self-management behaviors; however, not much is known about the types and characteristics of individuals' goals. The purpose of this study was to examine goal setting among people with epilepsy who participated in the WebEase program. WebEase is an Internet-based, theory-driven, self-management program with modules on medication adherence, stress management, and sleep habits. Participants had the opportunity to create and evaluate goals over the course of 6 weeks, with 2 weeks for each module. The goals were analyzed using three dimensions: content, specificity, and proximity. Most participants in the sample wrote goals for each week of the program. Several main content areas emerged within the modules. Goal quality, measured by specificity and proximity, did not differ according to readiness for behavior change. Readiness to change did not differ between those who wrote a goal and those who did not. The diversity of goal content and quality indicates that individuals should be supported in goal development and encouraged to set their own self-management goals, regardless of their readiness for behavior change.

  20. Guided Internet-based Psycho-educational Intervention Using Cognitive Behavioral Therapy and Self-management for Individuals with Chronic Pain: A Feasibility Study.

    Science.gov (United States)

    Perry, Jennifer; VanDenKerkhof, Elizabeth G; Wilson, Rosemary; Tripp, Dean A

    2017-06-01

    When considering barriers to chronic pain treatment, there is a need to deliver nonpharmacological therapies in a way that is accessible to all individuals who may benefit. To conduct feasibility testing using a guided, Internet-based intervention for individuals with chronic pain, a novel, Internet-based, chronic pain intervention (ICPI) was developed, using concepts proven effective in face-to-face interventions. This study was designed to assess usability of the ICPI and feasibility of conducting larger-scale research, and to collect preliminary data on effectiveness of the intervention. Data were collected at baseline, after each of the six intervention modules, and 12 weeks after intervention completion. Forty-one participants completed baseline questionnaires, and 15 completed the 12-week postintervention questionnaires. At baseline, all participants reported satisfaction with the structure of the intervention and ease of use. Internet-based platforms such as Facebook aided in accrual of participants, making further large-scale study of the ICPI feasible. There is preliminary evidence suggesting that the ICPI improves emotional function but not physical function, with a small but significant decrease in pain intensity and pain interference. Most participants felt they benefited at least minimally as a result of using the ICPI. The ICPI was well received by participants and demonstrated positive outcomes in this preliminary study. Further research with more participants is feasible and necessary to fully assess the effect of this intervention. Copyright © 2016 American Society for Pain Management Nursing. Published by Elsevier Inc. All rights reserved.

  1. Technologies of Compliance? : Telecare technologies and self-management of COPD patients

    NARCIS (Netherlands)

    Maathuis, Ivo; Oudshoorn, Nelly E.J.

    2016-01-01

    In current healthcare discourses self-management has been articulated as one