[Coping with chronic illness and multiple medicines in older age: self-management support as an obligation in nursing].

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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.

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.

Self-Management: Taking Charge of Your Health

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... 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 ...

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

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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

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

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

2014-01-01

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

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

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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.

Cultural expressions of bodily awareness among chronically ill Filipino Americans.

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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.

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

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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.

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

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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…

Psychopathology and self-esteem in chronic illness.

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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.

An intelligent partner system for improving chronic illness care

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Tibor Deutsch

2003-02-01

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

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

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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...

Illness Identity in Adults with a Chronic Illness.

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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.

Guidelines for the Gamification of Self-Management of Chronic Illnesses: Multimethod Study.

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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.

Tailoring Self-Management in Chronic Care

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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

Alexithymia, Illness Perception and Self-management Competency in Psoriasis

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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.

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

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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

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.

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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

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

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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.

Validation of the Self-Efficacy for Managing Chronic Disease Scale: A Scleroderma Patient-Centered Intervention Network cohort study

NARCIS (Netherlands)

Riehm, K.E.; Kwakkenbos, C.M.C.; Carrier, M.E.; Bartlett, S.J.; Malcarne, V.L.; Mouthon, L.; Nielson, W.R.; Poiraudeau, S.; Nielsen, K.; Baron, M.; Frech, T.; Hudson, M.; Pope, J.; Sauvé, M.; Suarez-Almazor, M.E.; Wigley, F.M.; Thombs, B.D.

2016-01-01

Objective: Self-management programs for patients with chronic illnesses, including rheumatic diseases, seek to enhance self-efficacy for performing health management behaviors. No measure of self-efficacy has been validated for patients with systemic sclerosis (SSc; scleroderma). The objective of

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

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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

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

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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

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

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Cramm, Jane Murray; Nieboer, Anna Petra

2012-06-01

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

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

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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

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

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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

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

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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

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

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

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

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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.

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

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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.

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

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Han, Jina

2017-05-01

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

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

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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.

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

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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.

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

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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.

Psychometric Properties of the Self-Perception Profile for Children in Children with Chronic Illness.

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Ferro, Mark A; Tang, Jennie

2017-07-01

The Self-Perception Profile for Children (SPPC) is a commonly used measure of self-concept in children, but little research has examined its psychometric properties in children newly-diagnosed with chronic illness. Confirmatory factor analysis and examination of reliability and convergent and discriminant validity of the SPPC was conducted in 31 children newly-diagnosed with asthma, diabetes, epilepsy, food allergy, or juvenile arthritis. The unidimensionality of each domain of the SPPC was confirmed, internal reliability was robust (α=.83-.95), and inter-domain polychoric correlations ranged from weak to strong (ρ=.05-.85) Convergent validity was demonstrated with measures of global self-concept and domains of quality of life. The Global Self-worth domain showed discriminant validity between children with and without comorbid mental disorder. Findings extend the psychometric properties of the SPPC as a valid and reliable scale in children newly-diagnosed with chronic illness.

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

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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.

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

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Thille, Patricia H; Russell, Grant M

2010-10-01

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

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

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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.

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

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

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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.

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

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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.

Are Primary Healthcare Organizational Attributes Associated with Patient Self-Efficacy for Managing Chronic Disease?

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Lemieux, Valérie; Lévesque, Jean-Frédéric; Ehrmann-Feldman, Debbie

2011-01-01

Our objective was to explore how individual and primary healthcare (PHC) organizational attributes influence patients' ability in chronic illness self-management. We conducted a cohort study, recruiting 776 adults with chronic disease from 33 PHC settings in the province of Quebec. Organizational data on the PHC clinics were obtained from a prior study. Participants were interviewed at baseline, 6 and 12 months, responding to questionnaires on self-efficacy, health status, socio-demographics, healthcare use and experience of care. Multilevel modelling showed that 52.5% of the variance in self-efficacy occurs at the level of the individual and 4.0% at the organizational level. Controlling for diagnosis, patient factors associated with self-efficacy were self-rated health (B coeff 0.76: CI 0.60; 0.92), concurrent depression (B coeff –1.41: CI 1.96; –0.86) and satisfaction with care (B coeff 0.27: CI 0.15; 0.39). None of the organizational attributes was significantly associated with self-efficacy after adjusting for lower-level variables. Patients generally reported receiving little self-management teaching across organizations. PMID:22548102

Are primary healthcare organizational attributes associated with patient self-efficacy for managing chronic disease?

Science.gov (United States)

Lemieux, Valérie; Lévesque, Jean-Frédéric; Ehrmann-Feldman, Debbie

2011-05-01

Our objective was to explore how individual and primary healthcare (PHC) organizational attributes influence patients' ability in chronic illness self-management. We conducted a cohort study, recruiting 776 adults with chronic disease from 33 PHC settings in the province of Quebec. Organizational data on the PHC clinics were obtained from a prior study. Participants were interviewed at baseline, 6 and 12 months, responding to questionnaires on self-efficacy, health status, socio-demographics, healthcare use and experience of care. Multilevel modelling showed that 52.5% of the variance in self-efficacy occurs at the level of the individual and 4.0% at the organizational level. Controlling for diagnosis, patient factors associated with self-efficacy were self-rated health (B coeff 0.76: CI 0.60; 0.92), concurrent depression (B coeff -1.41: CI 1.96; -0.86) and satisfaction with care (B coeff 0.27: CI 0.15; 0.39). None of the organizational attributes was significantly associated with self-efficacy after adjusting for lower-level variables. Patients generally reported receiving little self-management teaching across organizations.

Developments in patient activation of people with chronic illness and the impact of changes in self-reported health: results of a nationwide longitudinal study in the Netherlands.

NARCIS (Netherlands)

Rijken, M.; Heijmans, M.; Jansen, D.; Rademakers, J.J.D.J.M.

2014-01-01

Objective: To explore how patient activation, i.e. patients’ perceived knowledge, skills and self-confidence to manage their health and healthcare, develops within chronically ill individuals over time, and to estimate the impact of self-rated health on this development. Methods: Linear regression

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

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

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

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

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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…

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

Directory of Open Access Journals (Sweden)

Russell Simco

2015-02-01

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

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

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Ferro, Mark A; Boyle, Michael H

2015-01-01

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

Perceived Exercise Self-Efficacy, Benefits and Barriers, and Commitment to a Plan for Exercise among Jordanians with Chronic Illnesses.

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Darawad, Muhammad W; Khalil, Amani A; Hamdan-Mansour, Ayman M; Nofal, Basema M

2016-11-01

To explore Jordanian chronic illnesses patients' perceived exercise self-efficacy, benefits and barriers, and commitment to exercise planning, and to assess the relationship between those variables. Descriptive cross-sectional design. Data were collected from a convenience sample of 402 outpatient Jordanians with chronic illnesses, using Exercise Self-Efficacy Scale, Exercise Benefits and Barriers Scale, and Commitment to a Plan for Exercise Scale. The average BMI was 28.3, and exercise period 3.2 hours/ week. Participants reported moderate perceived self-efficacy (M= 47.5%, SD= 11.7), commitment to exercise planning (M=2.0/3, SD=0.3), exercise barriers (M=2.4/4, SD=0.3), and benefits (M=2.3/4, SD=0.3). Commitment to exercise planning had a significant correlation with barriers (r=0.11) and benefits (r=0.10). Self-efficacy was not found to correlate with other variables. Even though participants reported higher perceived self-efficacy and commitment to exercise plan than that reported in literature, they were found to be overweight and inactive, which indicates the importance of such study. Exercise education programs are needed taking into considerations patients' individual differences. However, the broad grouping of diseases may not produce a homogenous sample, for which disease categories are recommended in future studies. Patients with chronic illness need more encouragement to engage themselves in exercise practices. Exercise educational program for patients with chronic illnesses should consider patients' reported exercise benefits and barriers. © 2014 Association of Rehabilitation Nurses.

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

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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

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.

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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

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

Self-Regulatory Fatigue: A Missing Link in Understanding Fibromyalgia and Other Chronic MultiSymptom Illnesses.

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Nes, Lise Solberg; Ehlers, Shawna L; Whipple, Mary O; Vincent, Ann

2017-04-01

Patients with chronic multisymptom illnesses such as fibromyalgia syndrome (FMS) are experiencing a multitude of physical and mental challenges. Facing such challenges may drain capacity to self-regulate, and research suggests patients with these illnesses may experience self-regulatory fatigue (SRF). This study sought to examine whether SRF can be associated with quality of life (QoL) in patients with FMS. Patients (N = 258) diagnosed with FMS completed self-report measures related to demographics, SRF (Self-Regulatory Fatigue 18 [SRF-18]), anxiety (Generalized Anxiety Disorder questionnaire [GAD-7]), depression (Patient Health Questionnaire [PHQ-9]), physical fatigue (Multidimensional Fatigue Inventory [MFI]), symptoms related to FMS (Fibromyalgia Impact Questionnaire [FIQ]), and QoL (36-Item Short-Form Health Survey [SF-36]). Hierarchical regressions showed higher SRF to be associated with lower QoL in terms of lower overall physical QoL, with subscales related to physical functioning, role limitations-physical, bodily pain, and general health (all P's > 0.001), as well as lower overall mental QoL, with subscales related to vitality, social functioning, role limitations-emotional, and mental health (all P's > 0.001). Including traditional predictors such as anxiety, depression, physical fatigue, and FMS-related symptoms as covariates in the analyses reduced the link between SRF and QoL somewhat, but the associations remained generally strong, particularly for SRF and mental QoL. This is the first study to show higher SRF relating to lower QoL for patients with FMS. Results suggest that SRF is distinct from anxiety, depression, and fatigue, and predicts QoL above and beyond these traditional factors in the area of chronic multisymptom illnesses such as FMS. SRF may be a "missing link" in understanding the complex nature of chronic multisymptom illnesses. © 2016 World Institute of Pain.

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

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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.

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

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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.

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.

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

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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.

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.

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

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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.

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

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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.

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

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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.

Self-management education and support in chronic disease management.

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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.

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

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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

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

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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.

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.

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...

The South Australia Health Chronic Disease Self-Management Internet Trial

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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,…

[Disease management for chronic heart failure patient].

Science.gov (United States)

Bläuer, Cornelia; Pfister, Otmar; Bächtold, Christa; Junker, Therese; Spirig, Rebecca

2011-02-01

Patients with chronic heart failure (HF) are limited in their quality of life, have a poor prognosis and face frequent hospitalisations. Patient self-management was shown to improve quality of life, reduce rehospitalisations and costs in patients with chronic HF. Comprehensive disease management programmes are critical to foster patient self-management. The chronic care model developed by the WHO serves as the basis of such programmes. In order to develop self-management skills a needs orientated training concept is mandatory, as patients need both knowledge of the illness and the ability to use the information to make appropriate decisions according to their individual situation. Switzerland has no established system for the care of patients with chronic diseases in particular those with HF. For this reason a group of Swiss experts for HF designed a model for disease management for HF patients in Switzerland. Since 2009 the Swiss Heart Foundation offers an education programme based on this model. The aim of this programme is to offer education and support for practitioners, patients and families. An initial pilot evaluation of the program showed mixed acceptance by practitioners, whereas patient assessed the program as supportive and in line with their requirements.

How does social comparison within a self-help group influence adjustment to chronic illness? A longitudinal study.

Science.gov (United States)

Dibb, Bridget; Yardley, Lucy

2006-09-01

Despite the growing popularity of self-help groups for people with chronic illness, there has been surprisingly little research into how these may support adjustment to illness. This study investigated the role that social comparison, occurring within a self-help group, may play in adjustment to chronic illness. A model of adjustment based on control process theory and response shift theory was tested to determine whether social comparisons predicted adjustment after controlling for the catalyst for adjustment (disease severity) and antecedents (demographic and psychological factors). A sample of 301 people with Ménière's disease who were members of the Ménière's Society UK completed questionnaires at baseline and 10-month follow-up assessing adjustment, defined for this study as functional and goal-oriented quality of life. At baseline, they also completed measures of the predictor variables i.e. the antecedents (age, sex, living circumstances, duration of self-help group membership, self-esteem, optimism and perceived control over illness), the catalyst (severity of vertigo, tinnitus, hearing loss and fullness in the ear) and mechanisms of social comparison within the self-help group. The social comparison variables included the extent to which self-help group resources were used, and whether reading about other members' experiences induced positive or negative feelings. Cross-sectional results showed that positive social comparison was indeed associated with better adjustment after controlling for all the other baseline variables, while negative social comparison was associated with worse adjustment. However, greater levels of social comparison at baseline were associated with a deteriorating quality of life over the 10-month follow-up period. Alternative explanations for these findings are discussed.

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.

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.

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

Directory of Open Access Journals (Sweden)

Elizabeth Davis

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

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.

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

Validation of the PROMIS® measures of self-efficacy for managing chronic conditions.

Science.gov (United States)

Gruber-Baldini, Ann L; Velozo, Craig; Romero, Sergio; Shulman, Lisa M

2017-07-01

The Patient-Reported Outcomes Measurement Information System ® (PROMIS ® ) was designed to develop, validate, and standardize item banks to measure key domains of physical, mental, and social health in chronic conditions. This paper reports the calibration and validation testing of the PROMIS Self-Efficacy for Managing Chronic Conditions measures. PROMIS Self-Efficacy for Managing Chronic Conditions item banks comprise five domains, Self-Efficacy for Managing: Daily Activities, Symptoms, Medications and Treatments, Emotions, and Social Interactions. Banks were calibrated in 1087 subjects from two data sources: 837 patients with chronic neurologic conditions (epilepsy, multiple sclerosis, neuropathy, Parkinson disease, and stroke) and 250 subjects from an online Internet sample of adults with general chronic conditions. Scores were compared with one legacy scale: Self-Efficacy for Managing Chronic Disease 6-Item scale (SEMCD6) and five PROMIS short forms: Global Health (Physical and Mental), Physical Function, Fatigue, Depression, and Anxiety. The sample was 57% female, mean age = 53.8 (SD = 14.7), 76% white, 21% African American, 6% Hispanic, and 76% with greater than high school education. Full-item banks were created for each domain. All measures had good internal consistency and correlated well with SEMCD6 (r  = 0.56-0.75). Significant correlations were seen between the Self-Efficacy measures and other PROMIS short forms (r  > 0.38). The newly developed PROMIS Self-Efficacy for Managing Chronic Conditions measures include five domains of self-efficacy that were calibrated across diverse chronic conditions and show good internal consistency and cross-sectional validity.

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

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Scobie, Andrea

2011-04-01

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

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

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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.

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

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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.

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

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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

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

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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…

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

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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.

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.

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

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

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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.

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

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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.

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

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.

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

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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.

Conceptualizing and measuring illness self-concept: a comparison with self-esteem and optimism in predicting fibromyalgia adjustment.

Science.gov (United States)

Morea, Jessica M; Friend, Ronald; Bennett, Robert M

2008-12-01

Illness self-concept (ISC), or the extent to which individuals are consumed by their illness, was theoretically described and evaluated with the Illness Self-Concept Scale (ISCS), a new 23-item scale, to predict adjustment in fibromyalgia. To establish convergent and discriminant validity, illness self-concept was compared to self-esteem and optimism in predicting health status, illness intrusiveness, depression, and life satisfaction. The ISCS demonstrated good reliability (alpha = .94; test-retest r = .80) and was a strong predictor of outcomes, even after controlling for optimism or self-esteem. The ISCS predicted unique variance in health-related outcomes; optimism and self-esteem did not, providing construct validation. Illness self-concept may play a significant role in coping with fibromyalgia and may prove useful in the evaluation of other chronic illnesses. (c) 2008 Wiley Periodicals, Inc.

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.

The articulation of neoliberalism: narratives of experience of chronic illness management in Bulgaria and the UK.

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Vassilev, Ivaylo; Rogers, Anne; Todorova, Elka; Kennedy, Anne; Roukova, Poli

2017-03-01

The shift from social democratic to a neoliberal consensus in modern welfare capitalist states is characterised by an emphasis on individual responsibility, consumer choice, market rationality and growing social inequalities. There has been little exploration of how neoliberalism has shaped the environment within which chronic illness is experienced and managed. This article explores the different articulations of neoliberalism manifest in the arena of personal illness management in Bulgaria and the UK. People with type 2 diabetes discussed their experiences in terms of struggling with diet, diabetes as a personal failure, integrating illness management and valued activities, and the trustworthiness of the healthcare system. The UK narratives were framed within an individual responsibility discourse while in Bulgaria lack of resources dominated discussions, which were framed as structurally generated and unrelated to individual capabilities and choices. Respondents faced personal management challenges related to consumer and healthcare market failures in both countries. Differences in market regulation and emerging stakeholder and interest coalitions influenced users' expectations and their navigation and adaption to market failures in managing their everyday illnesses. The UK and Bulgarian articulations of neoliberalism can be described differently: the first as a logic of managed choice and the second as a logic of unmanaged consumerism. © 2016 Foundation for the Sociology of Health & Illness.

PRISM: Enmeshment of illness and self-schema.

Science.gov (United States)

Denton, Fiona; Sharpe, Louise; Schrieber, Leslie

2004-01-01

The Pictorial Representation of Illness and Self Measure (PRISM) is a recently developed tool purported to assess burden of suffering due to illness. The nature of the PRISM task suggests a conceptual link to the illness self-schema construct hypothesised to be present in some individuals with chronic illness. This study investigates the relationship between PRISM and schema as measured by cognitive bias. 43 patients with systemic lupus erythematosus (SLE) completed an information-processing task involving endorsement of positive and negative illness words as descriptors of themselves, followed by free recall of the words. The outcome measures were endorsement and recall bias for negative illness words. Patients also completed the PRISM task and were assessed on other physical and psychological variables. PRISM did not correlate significantly with age, depression, functional impairment or disease activity. In a multiple regression analysis, only recall bias made an independent contribution to PRISM. Illness self-schema appears to play a significant role in determining the way in which SLE patients complete the PRISM task. This is discussed in light of a schema enmeshment model recently proposed in the cognitive bias literature. Copyright 2004 S. Karger AG, Basel

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.

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

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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.

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’

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

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Symptom Severity: Stress Management Skills are Related to Lower Illness Burden.

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Lattie, Emily G; Antoni, Michael H; Fletcher, Mary Ann; Czaja, Sara; Perdomo, Dolores; Sala, Andreina; Nair, Sankaran; Fu, Shih Hua; Penedo, Frank J; Klimas, Nancy

2013-01-01

The onset of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) typically involves reductions in activities of daily living and social interactions (jointly referred to as "illness burden"). Emotional distress has been linked to increased reported symptoms, and stress management skills have been related to lower fatigue severity in CFS patients. Symptom severity and illness burden are highly correlated. The ability to manage stress may attenuate this relationship, allowing individuals to feel less burdened by the illness independent of the severity of their symptoms. This study aimed to evaluate if perceived stress management skills affect illness burden via emotional distress, independent of ME/CFS symptom severity. A total of 117 adults with ME/CFS completed measures of perceived stress management skills, emotional distress, ME/CFS symptom severity and illness burden. Regression analyses revealed that greater perceived stress management skills related to less social and fatigue-related illness burden, via lower emotional distress. This relationship existed independent of the association of symptom severity on illness burden, and was stronger among those not currently employed. Ability to manage stress is associated with a lower illness burden for individuals with ME/CFS. Future studies should evaluate the efficacy of psychosocial interventions in lowering illness burden by targeting stress management skills.

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

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.

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

OpenAIRE

Jeong-Ah Ahn, PhD, RN; Sunhee Lee, PhD, RN

2016-01-01

Purpose: The purpose of this study was to identify how peer attachment and parenting style differentially affect self-concept and school adjustment in adolescents with and without chronic illness. Methods: A cross-sectional study using multiple group analysis on the Korean panel data was used. A nationwide stratified multistage cluster sampling method was used and the survey was conducted in 2013 on 2,092 first-year middle school students in Korea. We used standardized instruments by the N...

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

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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.

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

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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

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

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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.

Control in chronic condition self-care management

DEFF Research Database (Denmark)

Lawn, Sharon; Delany, Toni; Sweet, Linda

2014-01-01

of their communication style and the power of their role must improve for client chronic condition self-care management to be achieved. Training on the impacts of control in worker communication and systems where they work must be provided if unbeneficial forms of client dependency are to be overcome and true self......Aim: To examine health worker-client interactions during care planning to understand processes that foster client empowerment and disempowerment. Background: It is unclear how health worker-client exchanges and information sharing through chronic condition care planning currently operate in primary...... health care. Moreover, it is unclear how control in these exchanges either enhances collaborative decision-making, partnership and client empowerment, or works to create client disempowerment and dependency on workers and health services. Design: Critical discourse analysis of qualitative data from...

Development of a chronic care ostomy self-management program.

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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.

Development of a Chronic Care Ostomy Self Management Program

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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

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

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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.

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

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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.

Exploring views on satisfaction with life in young children with chronic illness: an innovative approach to the collection of self-report data from children under 11

NARCIS (Netherlands)

Christie, D.; Romano, G.; Barnes, J.; Madge, N.; Nicholas, D.B.; Koot, H.M.; Armstrong, D.F.; Shevlin, M.; Kantaris, X.; Khatun, H.; Sutcliffe, A.G.

2012-01-01

The objective of this study was to explore young children's views on the impact of chronic illness on their life in order to inform future development of a patient-based self-report health outcome measure. We describe an approach to facilitating self-report views from young children with chronic

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 ...

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

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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.

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

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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.

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

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

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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.

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

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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.

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.

The Relationship Between Health Management and Information Behavior Over Time: A Study of the Illness Journeys of People Living With Fibromyalgia.

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Chen, Annie T

2016-10-25

Over the course of a chronic illness, patients face many challenges, including understanding what is happening to them and developing an effective strategy for managing illness. While there is existing literature concerning how people seek health-related information and cope with chronic illnesses, there is a need for additional research on how information affects patients' understandings of their illness, and how changes in this understanding affect their health management strategies over time. This study examined how health management, information seeking, and information consumption and use processes are related throughout an illness. A diversified recruitment strategy involving multiple media channels was used to recruit participants for an interview study. During the interviews, participants were asked to draw an "illness journey" timeline. The data were analyzed using a qualitative approach drawn from Interpretative Phenomenological Analysis and Grounded Theory. The study identified four main health management features of illness journeys: onset, progression toward diagnosis, acceptance, and development of an effective management strategy. The study then focused on how information seeking changes over illness journeys, particularly in terms of a transition from active information seeking to monitoring with intermittent focused searching. Last, the paper describes the information consumption and use processes that patients engaged in throughout their journey. This study makes three important contributions to the field. First, it presents an integrated conceptualization of how health management and information behaviors are related on illness journeys. Second, it adds to our existing knowledge on health literacy and self-management of chronic illness. Third, the study has implications for health interface design.

Consumer Health Informatics: Promoting Patient Self-care Management of Illnesses and Health.

Science.gov (United States)

Jung, Minsoo

Consumer health informatics (CHI) is propelling important changes for medical providers and the lives of patients through information and communications technology. Independently, medical consumers seek, collect, and use health information for decision making. However, when constructing a CHI-based medical platform, high technology must be applied in a fully understandable and usable format for both health care providers and consumers. This study examines the present status of CHI and its effect on medical consumers. For the development of CHI, we discuss the need for tailored health communications and capacity building with chronic patients at the medical center. First, empowerment is a key characteristic needed for medical consumer health care management. However, promoting patient self-care management of illnesses and health is necessary to create conjugation where cooperation with medical service providers is possible. Also, establishing a health care delivery system that will support cooperation is necessary. Second, tailored health communications can uniquely construct the health information of patients, which prevents unnecessary or excessive information from leading patients to confused and inappropriate decisions. Ultimately, through the present environment of health communication, the innovation of a consumer health care information system has become the tide of the times and the positive effect of improved health can be expected.

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

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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

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

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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.

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

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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

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

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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.

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

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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

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.

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.

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

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

2015-06-01

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

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

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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.

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

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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.

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

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

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

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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.

Chronic disease management in rural and underserved populations: innovation and system improvement help lead to success.

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Bolin, Jane; Gamm, Larry; Kash, Bita; Peck, Mitchell

2005-03-01

Successful implementation of disease management (DM) is based on the ability of an organization to overcome a variety of barriers to deliver timely, appropriate care of chronic illnesses. Such programs initiate DM services to patient populations while initiating self-management education among medication-resistant patients who are chronically ill. Despite formidable challenges, rural health care providers have been successful in initiating DM programs and have discovered several ways in which these programs benefit their organizations. This research reports on six DM programs that serve large rural and underserved populations and have demonstrated that DM can be successfully implemented in such areas.

The Role of Hope for Adolescents with a Chronic Illness: An Integrative Review.

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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.

Self-esteem and illness self-concept in emerging adults with Type 1 diabetes: Long-term associations with problem areas in diabetes.

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Luyckx, Koen; Rassart, Jessica; Aujoulat, Isabelle; Goubert, Liesbet; Weets, Ilse

2016-04-01

This long-term prospective study examined whether illness self-concept (or the degree to which chronic illness becomes integrated in the self) mediated the pathway from self-esteem to problem areas in diabetes in emerging adults with Type 1 diabetes. Having a central illness self-concept (i.e. feeling overwhelmed by diabetes) was found to relate to lower self-esteem, and more treatment, food, emotional, and social support problems. Furthermore, path analyses indicated that self-esteem was negatively related to both levels and relative changes in these problem areas in diabetes over a period of 5 years. Illness self-concept fully mediated these associations. © The Author(s) 2014.

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

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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.

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

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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.

Self-esteem in adolescents with chronic physical illness vs. controls in Northern Russia.

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Zashikhina, Anna; Hagglof, Bruno

2014-01-01

This work aims to study self-esteem in adolescents with diabetes, asthma and epilepsy; compare the results with those of the representative sample of healthy adolescents; and evaluate the predictive value of certain demographic, family-related, and disease-related factors on self-esteem. A total of 148 chronically ill adolescents and 301 matched healthy counterparts completed the Rosenberg Self Esteem Scale and the "I think I am" questionnaire. Adolescents' parents answered socio-economic status questions. Disease severity was evaluated by doctors of the outpatient clinic. Comparison analysis of the three disease groups revealed highest self-esteem perception in adolescents with diabetes, and lowest in adolescents with epilepsy. Unexpectedly, adolescents with diabetes scored higher than their healthy counterparts. There were no significant differences between the reports of adolescents with asthma and controls. In the epilepsy group, self-esteem was predicted mostly by disease severity and socio-economic status in diabetes and asthma groups, as well as by age and gender. The maintenance of positive self-esteem in adolescents with diabetes and asthma is a very reassuring finding. The other results of our study provide support for recognizing adolescents with epilepsy as a vulnerable group in the society. A multidisciplinary professional approach targeted on adolescents with epilepsy is needed, with focus on factors connected with maturation and gender issues.

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

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

2010-01-01

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

Integrating co-morbid depression and chronic physical disease management: identifying and resolving failures in self-regulation.

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Detweiler-Bedell, Jerusha B; Friedman, Michael A; Leventhal, Howard; Miller, Ivan W; Leventhal, Elaine A

2008-12-01

Research suggests that treatments for depression among individuals with chronic physical disease do not improve disease outcomes significantly, and chronic disease management programs do not necessarily improve mood. For individuals experiencing co-morbid depression and chronic physical disease, demands on the self-regulation system are compounded, leading to a rapid depletion of self-regulatory resources. Because disease and depression management are not integrated, patients lack the understanding needed to prioritize self-regulatory goals in a way that makes disease and depression management synergistic. A framework in which the management of co-morbidity is considered alongside the management of either condition alone offers benefits to researchers and practitioners and may help improve clinical outcomes.

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

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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.

A comparison of adherence to hypoglycemic medications between Type 2 diabetes patients with and without serious mental illness

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Kreyenbuhl, Julie; Leith, Jaclyn; Medoff, Deborah R.; Fang, LiJuan; Dickerson, Faith B.; Brown, Clayton H.; Goldberg, Richard W.; Potts, Wendy; Dixon, Lisa B.

2011-01-01

Inadequate self-management of chronic medical conditions like Type 2 diabetes may play a role in the poor health status of individuals with serious mental illnesses. We compared adherence to hypoglycemic medications and blood glucose control between 44 diabetes patients with a serious mental illness and 30 patients without a psychiatric illness. The two groups did not differ in their ability to manage a complex medication regimen as assessed by a performance-based measure of medication management capacity. However, significantly fewer patients with a mental illness self-reported nonadherence to their hypoglycemic regimens compared to those without a mental illness. Although individuals with mental illnesses also had better control of blood glucose, this metabolic parameter was not correlated with adherence to hypoglycemic medications in either patient group. The experience of managing a chronic mental illness may confer advantages to individuals with serious mental illnesses in the self-care of co-occurring medical conditions like Type 2 diabetes. PMID:21459458

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

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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.

Discontinuing treatment in children with chronic, critical illnesses.

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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.

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

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

The English and Spanish Self-Efficacy to Manage Chronic Disease Scale measures were validated using multiple studies.

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Ritter, Philip L; Lorig, Kate

2014-11-01

Self-efficacy theory, as developed by Bandura, suggests that self-efficacy is an important predictor of future behavior. The Chronic Disease Self-Management Program was designed to enhance self-efficacy as one approach to improving health behaviors and outcomes for people with varying chronic diseases. The six-item Self-Efficacy to Manage Chronic Disease Scale (SEMCD) and the four-item Spanish-language version (SEMCD-S) were developed to measure changes in self-efficacy in program participants and have been used in a numerous evaluations of chronic disease self-management programs. This study describes the development of the scales and their psychometric properties. Secondary analyses of questionnaire data from 2,866 participants in six studies are used to quantify and evaluate the SEMCD. Data from 868 participants in two studies are used for the SEMCD-S. Subjects consisted of individuals with various chronic conditions, who enrolled in chronic disease self-management programs (either small group or Internet based). Subjects came from United States, England, Canada, Mexico, and Australia. Descriptive statistics are summarized, reliability tested (Cronbach alpha), and principal component analyses applied to items. Baseline and change scores are correlated with baseline and change scores for five medical outcome variables that have been shown to be associated with self-efficacy measures in past studies. Principal component analyses confirmed the one-dimensional structure of the scales. The SEMCD had means ranging from 4.9 to 6.1 and the SEMCD-S 6.1 and 6.2. Internal consistency was high (Cronbach alpha, 0.88-0.95). The scales were sensitive to change and significantly correlated with health outcomes. The SEMCD and SEMCD-S are reliable and appear to be valid instruments for assessing self-efficacy for managing chronic disease. There was remarkable consistency across a range of studies from varying countries using two languages. Copyright © 2014 Elsevier Inc. All

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

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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.

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.

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. 

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

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

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.

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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.

Socio-ecological resources for diabetes self-management.

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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.

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.

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

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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

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

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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.

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

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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.

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

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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.

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

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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.

Differences and similarities in the trajectories of self-esteem and positive and negative affect in persons with chronic illness: an explorative longitudinal study.

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Bonsaksen, Tore; Lerdal, Anners; Småstuen, Milada Cvancarova; Fagermoen, May Solveig

2016-01-01

Chronic illness is a risk factor for low self-esteem, and the research literature needs to include more studies of self-esteem and its development in chronic illness groups using longitudinal and comparative designs. The aim of this study was to explore the trajectories of self-esteem and of positive and negative affect in persons with morbid obesity and in persons with chronic obstructive pulmonary disease (COPD). Patient education course attendants in Norway having morbid obesity (n=139) or COPD (n=97) participated in the study. Data concerning self-esteem, positive and negative affect, and sociodemographic background were collected at the start and at the end of the patient education, with subsequent follow-ups at 3, 6, and 12 months. Data were analyzed using linear mixed models for repeated measures. Taking all measurements into account, our data revealed a statistically significant increase in self-esteem for participants with morbid obesity but not for those with COPD. There were no significant differences in levels of negative and positive affect between the two groups, and the time-trajectories were also similar. However, participants in both groups achieved lower levels of negative affect for all the successive measurement points. An increase in self-esteem during the first year after the patient education course was observed for persons with morbid obesity, but not for persons with COPD. Initial higher levels of self-esteem in the participants with COPD may indicate that they are less troubled with low self-esteem than people with morbid obesity are. The pattern of reduced negative affect for both groups during follow-up is promising.

Differences and similarities in the trajectories of self-esteem and positive and negative affect in persons with chronic illness: an explorative longitudinal study

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Bonsaksen, Tore; Lerdal, Anners; Småstuen, Milada Cvancarova; Fagermoen, May Solveig

2016-01-01

Background Chronic illness is a risk factor for low self-esteem, and the research literature needs to include more studies of self-esteem and its development in chronic illness groups using longitudinal and comparative designs. The aim of this study was to explore the trajectories of self-esteem and of positive and negative affect in persons with morbid obesity and in persons with chronic obstructive pulmonary disease (COPD). Methods Patient education course attendants in Norway having morbid obesity (n=139) or COPD (n=97) participated in the study. Data concerning self-esteem, positive and negative affect, and sociodemographic background were collected at the start and at the end of the patient education, with subsequent follow-ups at 3, 6, and 12 months. Data were analyzed using linear mixed models for repeated measures. Results Taking all measurements into account, our data revealed a statistically significant increase in self-esteem for participants with morbid obesity but not for those with COPD. There were no significant differences in levels of negative and positive affect between the two groups, and the time-trajectories were also similar. However, participants in both groups achieved lower levels of negative affect for all the successive measurement points. Conclusion An increase in self-esteem during the first year after the patient education course was observed for persons with morbid obesity, but not for persons with COPD. Initial higher levels of self-esteem in the participants with COPD may indicate that they are less troubled with low self-esteem than people with morbid obesity are. The pattern of reduced negative affect for both groups during follow-up is promising. PMID:27574438

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

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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.

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

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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.

Young adult outcomes of children growing up with chronic illness: an analysis of the National Longitudinal Study of Adolescent Health.

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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.

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

[The German National Disease Management Guideline "Chronic Heart Failure"].

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Weinbrenner, S; Langer, T; Scherer, M; Störk, S; Ertl, G; Muth, Ch; Hoppe, U C; Kopp, I; Ollenschläger, G

2012-02-01

Chronic heart failure (CHF) is an illness mostly affecting elderly people. In Germany CHF is one of the most common causes of death and at the same time one of the most common diagnosis in inpatient care. Due to the expected increase in life expectancy in the next few years experts predict a further step-up of the incidence. Against this background development of a national guideline on chronic heart failure was prioritised and accordingly the National Disease Management Guideline (NDMG) Chronic Heart Failure was developed by a multi- and interdisciplinary group. The guideline group comprised experts from all relevant scientific medical societies as well as a patient expert. The National Disease Management Guideline (NDMG) on Chronic Heart Failure aims at supporting patients and health care providers with respect to decisions on a specific health care problem by giving recommendations for actions. Recommendations are informed by the best available scientific evidence on this topic.Patients with CHF often suffer from multiple conditions. Due to this fact and the old age patients do have very complex and demanding health care needs. Thus accounting for co-morbidities is paramount in planning and providing health care for theses patients and communication between doctor and patient but also between all health care providers is crucial.Basic treatment strategies in chronic heart failure comprise management of risk factors and prognostic factors as well as appropriate consideration of co-morbidities accompanied by measures empowering patients in establishing a healthy life style and a self-dependant management of their illness.Psycho-social aspects have a very strong influence on patients' acceptance of the disease and their self-management. In addition they have a strong influence on therapy management of the treating physician thus they have to be addressed adequately during the consultation.The National Disease Management Guideline (NDMG) Chronic Heart Failure (CHF

Systematic review of character development and childhood chronic illness.

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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.

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

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

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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.

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

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

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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.

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

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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.

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

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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.

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.

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

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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

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

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

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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.

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

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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

Illness self-concept in Type 1 diabetes: a cross-sectional view on clinical, demographic, and psychosocial correlates.

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Luyckx, Koen; Rassart, Jessica; Weets, Ilse

2015-01-01

The present study assessed the centrality of one's illness self-concept, or the degree to which chronic illness intrudes upon one's self, in a sample of 478 18-35-year-old patients with Type 1 diabetes. Confirmatory factor analysis indicated that illness self-concept centrality was a one-dimensional construct, despite the fact that three constituting components (i.e. pervasiveness, directionality, and illness self-consciousness) have been forwarded. Further, important demographic and clinical correlates of illness self-concept were identified: women, unemployed individuals, individuals with a lower educational level, and patients with an insulin pump had a more central illness self-concept. Finally, a series of correlation and regression analyses indicated that, despite the fact that illness self-concept centrality was negatively related to emotional stability, self-esteem, and diabetes integration, and positively to perceived consequences of diabetes, illness self-concept had unique predictive value over and above these variables for problem areas in diabetes and depressive symptoms. Implications and suggestions for future research are outlined.

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

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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.

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

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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.

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.

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.

Factors associated with self-esteem in persons with morbid obesity and in persons with chronic obstructive pulmonary disease: A cross-sectional study

OpenAIRE

Bonsaksen, Tore; Fagermoen, May Solveig; Lerdal, Anners

2014-01-01

Living with chronic illnesses can be stressful and may negatively impact persons’ self-esteem. Personal factors, like self-efficacy and illness perceptions, and also factors related to the environment, activity, and participation may be associated with self-esteem in chronic illness populations. This cross-sectional comparative study explored sociodemographic variables, work, physical activity, illness perceptions, and general self-efficacy in relation to self-esteem in persons with morbid ob...

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

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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.

Primary immunodeficiency disease: a model for case management of chronic diseases.

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Burton, Janet; Murphy, Elyse; Riley, Patty

2010-01-01

Patient-centered chronic care management is a new model for the management of rare chronic diseases such as primary immunodeficiency disease (PIDD). This approach emphasizes helping patients become experts on the management of their disease as informed, involved, and interactive partners in healthcare decisions with providers. Because only a few patients are affected by rare illnesses, these patients are forced to become knowledgeable about their disease and therapies and to seek treatment from a healthcare team, which includes physicians and nurse specialists who are equipped to manage the complexity of the disease and its comorbidities. Importantly, therapy for PIDD can be self-administered at home, which has encouraged the transition toward a proactive stance that is at the heart of patient-centered chronic care management. We discuss the evolution of therapy, the issues with the disease, and challenges with its management within the framework of other chronic disease management programs. Suggestions and rationale to move case management of PIDD forward are presented with the intent that sharing our experiences will improve process and better manage outcomes in this patient population. The patient-centered model for the management of PIDD is applicable to the primary care settings, where nurse case managers assist patients through education, support them and their families, and facilitate access to community resources in an approach, which has been described as "guided care." The model also applies specifically to immunology centers where patients receive treatment or instruction on its self-administration at home. Patient-centered management of PIDD, with its emphasis on full involvement of patients in their treatment, has the potential to improve compliance with treatment, and thus patient outcomes, as well as patients' quality of life. The patient-centered model expands the traditional model of chronic disease management, which relies on evidence

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

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

2018-01-26

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

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

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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

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

Directory of Open Access Journals (Sweden)

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.

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

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

2012-01-01

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

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

Directory of Open Access Journals (Sweden)

Baldauf Annika

2011-06-01

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

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

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

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.

Positive Psychological Wellbeing Is Required for Online Self-Help Acceptance and Commitment Therapy for Chronic Pain to be Effective

NARCIS (Netherlands)

Trompetter, H.R.; Bohlmeijer, Ernst Thomas; Lamers, S.M.A.; Schreurs, Karlein Maria Gertrudis

2016-01-01

The web-based delivery of psychosocial interventions is a promising treatment modality for people suffering from chronic pain, and other forms of physical and mental illness. Despite the promising findings of first studies, patients may vary in the benefits they draw from self-managing a full-blown

Managing 'difficult emotions' and family life: exploring insights and social support within online self-management training.

Science.gov (United States)

Sanders, C; Rogers, A; Gardner, C; Kennedy, A

2011-06-01

Previous research has demonstrated how the Internet can foster emotional support and provide a 'private' space for discussing sensitive issues. Whilst the family has been located as a primary source of support, empirical research on the dynamics of close personal relationships in chronic illness experience remains a challenge. To explore the role of family relationships in supporting self-care and the nature of social support exchanged within an online self-management training course. Qualitative thematic and narrative analysis of online discussion boards. Postings for 218 participants, divided between 11 groups were included for a course section that focused on 'difficult emotions'. Participants exchanged a high degree of emotional support and revealed much about their 'real life' relationships. The latter highlighted the complexities of managing illness within family contexts alongside additional pressures of daily life such as caring commitments and work roles. The private interactive space created within the course allowed insights into the dynamics of family life associated with illness management that are challenging to research. Simultaneously, collective support was developed amongst this group of predominantly working women. The article points to the implications for such interventions and associated evaluative research beyond this selective group.

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

An Interactive Mobile Phone-Website Platform to Facilitate Real-Time Management of Medication in Chronically ill Patients.

Science.gov (United States)

Anglada-Martínez, Helena; Martin-Conde, Maite; Rovira-Illamola, Marina; Sotoca-Momblona, Jose Miguel; Sequeira, Ethel; Aragunde, Valentin; Codina-Jané, Carles

2017-08-01

Poor adherence to medication is a prevalent issue that affects 50-60% of chronically ill patients. We present Medplan, a platform for patients/caregivers and healthcare professionals (HCPs) that aims to enhance adherence, increase patient medication knowledge, and facilitate communication between patients and HCPs. The Medplan platform was designed and developed by a multidisciplinary team composed of primary care and hospital physicians, pharmacists, patients, and developers. We questioned 62 patients in order to know their opinion about the different functions the app would incorporate and other possible features that should be taken into consideration. Medplan comprises a website for HCPs and an application (app) that is installed on the patient's phone. The app is available in Spanish, Catalan, and English. The patient's medication plan was introduced by the HCP and interfaced with the app. Each medicine is represented by an icon showing the indication of the treatment, the trade name, active ingredients, dose, and route of administration. Information about special requirements (e.g., need to take medication on an empty stomach), side effects, or lifestyle recommendations can also be provided. Additional functions include a medication reminder alarm system, by which patients can confirm whether or not they have taken the drug. Patients can self-track their adherence, and all data collected are sent automatically to the website for analysis by the HCP. Weekly motivation messages are sent to encourage adherence. A tool enabling interactive communication between patients and HCPs (primary care or hospital care) is also included. The app contains a feature enabling the HCP to verify the suitability of over-the-counter drugs. Medplan has the potential to significantly improve management of medication in chronically ill patients. A pilot study is being conducted to test whether Medplan is useful and effective.

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.

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.

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.

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

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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.

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…

Health Self-Efficacy Among Populations with Multiple Chronic Conditions: the Value of Patient-Centered Communication.

Science.gov (United States)

Finney Rutten, Lila J; Hesse, Bradford W; St Sauver, Jennifer L; Wilson, Patrick; Chawla, Neetu; Hartigan, Danielle B; Moser, Richard P; Taplin, Stephen; Glasgow, Russell; Arora, Neeraj K

2016-08-01

Using cross-sectional survey data, we assessed the association between chronic illness burden and health-related self-efficacy, evaluating whether patient-centered communication is associated with self-efficacy and if that relationship varies by chronic illness burden. Data were from the Health Information National Trends Survey, a cross-sectional survey of the US adult population collected in 2012-2013 (n = 3630). Health-related self-efficacy was measured with the item: "Overall, how confident are you about your ability to take good care of your health?" and the prevalence of six chronic conditions and depression/anxiety was assessed. Patient-centered communication was measured as the frequency with which respondents perceived their healthcare providers allowed them to ask questions, gave attention to their emotions, involved them in decisions, made sure they understood how to take care of their health, helped them to deal with uncertainty, and if they felt they could rely on their healthcare providers to take care of their healthcare needs. Health-related self-efficacy was significantly lower among individuals with greater illness burden. In adjusted analysis, individuals who experienced more positive patient-centered communication reported higher levels of self-efficacy (β = 0.26, P self-efficacy were observed among patients reporting more positive patient-centered communication; the observed association was stronger among those with greater chronic illness burden.

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.

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.

Development of a measure of the impact of chronic parental illness on adolescent and adult children. The parental illness impact scale (Parkinson's disease).

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Schrag, Anette; Morley, David; Quinn, Niall; Jahanshahi, Marjan

2004-10-01

Although chronic illness is likely to affect the well-being of patients' children, no assessment tools are currently available to measure this impact of parental illness. We therefore developed such an instrument based on interviews with children of patients with Parkinson's disease (PD). This questionnaire and other measures of psychological well-being were completed by 89 children, aged 12-48, years of patients with PD. Factor analysis revealed six domains with 38 questions. These six domains of the 'Parental Illness Impact Scale (Parkinson's disease)' or PIIS (PD) had satisfactory internal consistency and validity. Its six sub-scales correlated significantly and differentially with corresponding measures, including the Quality of Life in Epilepsy Inventory for Adolescents (QOLIE-AD-48; r = -0.2 to 0.85), the Beck Depression Inventory (r = -0.07 to -0.40) or Birleson Depression Self-Rating Scale (r = 0.04 to -0.62), and the Rosenberg Self-Esteem Scale (r = -0.01 to 0.33) as well as age (r = -0.37 to 0.28) and parent's disease duration (r = -0.31 to 0.34). The PIIS is the first instrument to assess the impact of parental illness on children. Its psychometric properties should be tested further in larger samples, including children of patients with other chronic disorders such as multiple sclerosis or chronic heart disease.

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.

[Self-stigma, self-esteem and self-efficacy of mentally ill].

Science.gov (United States)

Pasmatzi, E; Koulierakis, G; Giaglis, G

2016-01-01

The way that the social stigma of mental illness is related with the self-stigma, which in turn affects self-esteem and self-efficacy of mental patients was investigated. A sample of 66 patients in the Adult Psychiatric Clinic of the Thessaloniki General Hospital "G. Papanikolaou" was participated in this descriptive association study, with cross-sectional comparisons. The sample comprised of patients who were hospitalized or visited the Clinic as out-patients during the period that the study was undertaken. A tool for measuring the basic demographic, social and clinical characteristics of the participants was designed and used. Additionally, the Self-Stigma of Mental Illness Scale, SSMIS, Rosenberg's Self-Esteem Scale, RSE and the General Self-Efficacy Sherer Scale, GSESH were used for measuring self-stigma, self-esteem and self-efficacy respectively. Results showed that self-esteem and self-efficacy were highly associated with each another. Self-esteem and self-efficacy co varied. Greater self-stigma was associated with lower self-esteem and selfefficacy confirming the power of this relationship which is connected with patients' psychological empowerment and acts as mediator between patients' self-categorization as "mentally ill" and their self-esteem and self-efficacy. Additionally, a mild negative association between self-esteem, self-efficacy and age was found while higher educational level was associated with greater selfefficacy. Greater self-stigma along with lower educational level were the most significant predictors of both self-esteem and self-efficacy of mental patients, as shown by regression analysis. Some of our results, such as the percentage of low self-esteem (30.3%), were different from previous relevant data (9.1-24%), probably due to differences in sample's cultural characteristics and composition, research tools used, and the degree of mentally ill patients' reaction to social stigma perception. Despite its methodological limitations, the

When the ringing in the earsgetsunbearable : Illness representations, self-instructions and adjustment to tinnitus

OpenAIRE

Vollmann, Manja; Kalkouskaya, Natallia; Langguth, Berthold; Scharloo, Margreet

2012-01-01

ObjectiveChronic tinnitus can severely impair a person's quality of life. The degree of impairment, however, is not closely related to tinnitus loudness. Applying the common sense model (CSM) of self-regulation of health and illness, this study investigated to what extent psychological factors, i.e. illness representations and positive/negative self-instructions, are associated with the degree of tinnitus-related complaints.MethodsIn this cross-sectional study, 118 patients diagnosed with chr...

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.

Changes in eating pathology and associated symptoms among chronically ill adults attending a brief psychoeducational group.

Science.gov (United States)

von Ranson, Kristin M; Stevenson, Andrea S; Cannon, Colleen K; Shah, Wendy

2010-08-01

Two quasi-experimental pilot studies examined eating pathology, eating self-efficacy, shame, guilt, and pride in adults with chronic illness before and after participating in brief cognitive-behavioral psychoeducational groups addressing eating concerns. In Study 1, 60 adults completed assessments before and after a series of two groups; in Study 2, 21 adults also completed an assessment five weeks prior to the first group to identify time-related changes in symptoms. Study 1 participants improved across domains, whereas Study 2 analyses also examining time-related changes showed improvements in eating self-efficacy, shame, guilt, and pride, but not in eating pathology. Psychoeducational groups may help improve symptoms including eating pathology, eating self-efficacy, shame, guilt, and pride among chronically-ill adults with eating concerns. 2009 Elsevier Ltd. All rights reserved.

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.

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.

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...

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.

When the ringing in the ears gets unbearable: Illness representations, self-instructions and adjustment to tinnitus.

Science.gov (United States)

Vollmann, Manja; Kalkouskaya, Natallia; Langguth, Berthold; Scharloo, Margreet

2012-08-01

Chronic tinnitus can severely impair a person's quality of life. The degree of impairment, however, is not closely related to tinnitus loudness. Applying the common sense model (CSM) of self-regulation of health and illness, this study investigated to what extent psychological factors, i.e. illness representations and positive/negative self-instructions, are associated with the degree of tinnitus-related complaints. In this cross-sectional study, 118 patients diagnosed with chronic tinnitus filled in questionnaires assessing illness representations (IPQ-R), positive and negative self-instructions (TRSS), and tinnitus-related complaints (TQ). The regression analysis yielded a number of significant associations between illness representations and tinnitus-related complaints, particularly for the IPQ-R dimensions identity, consequences, coherence, and emotional representations. With regard to self-instructions and tinnitus-related complaints, significant effects were found only for negative self-instructions. Moreover, multiple mediation analyses revealed that the effects of consequences and emotional representations on tinnitus-related complaints were (partially) due to the use of negative self-instructions. Psychological factors are strongly related to the extent of tinnitus-related complaints. The findings provide an indication of which aspects should be targeted in psychological and psychotherapeutic tinnitus treatment. Copyright © 2012 Elsevier Inc. All rights reserved.

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'

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

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

Science.gov (United States)

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

2010-11-01

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

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...

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

Emerging models for mobilizing family support for chronic disease management: a structured review.

Science.gov (United States)

Rosland, Ann-Marie; Piette, John D

2010-03-01

We identify recent models for programmes aiming to increase effective family support for chronic illness management and self-care among adult patients without significant physical or cognitive disabilities. We then summarize evidence regarding the efficacy for each model identified. Structured review of studies published in medical and psychology databases from 1990 to the present, reference review, general Web searches and conversations with family intervention experts. Review was limited to studies on conditions that require ongoing self-management, such as diabetes, chronic heart disease and rheumatologic disease. Programmes with three separate foci were identified: (1) Programmes that guide family members in setting goals for supporting patient self-care behaviours have led to improved implementation of family support roles, but have mixed success improving patient outcomes. (2) Programmes that train family in supportive communication techniques, such as prompting patient coping techniques or use of autonomy supportive statements, have successfully improved patient symptom management and health behaviours. (3) Programmes that give families tools and infrastructure to assist in monitoring clinical symptoms and medications are being conducted, with no evidence to date on their impact on patient outcomes. The next generation of programmes to improve family support for chronic disease management incorporate a variety of strategies. Future research can define optimal clinical situations for family support programmes, the most effective combinations of support strategies, and how best to integrate family support programmes into comprehensive models of chronic disease care.

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.

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

Science.gov (United States)

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

2016-03-01

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

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.

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

Science.gov (United States)

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

2011-09-01

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

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.

Wellness and illness self-management skills in community corrections.

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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.

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

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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.

Predicting depression from illness severity in cardiovascular disease patients: self-efficacy beliefs, illness perception, and perceived social support as mediators.

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Greco, A; Steca, P; Pozzi, R; Monzani, D; D'Addario, M; Villani, A; Rella, V; Giglio, A; Malfatto, G; Parati, G

2014-04-01

Many studies have investigated the relationships between cardiovascular diseases and patients' depression; nevertheless, few is still known as regard the impact of illness severity on depression and whether psychosocial variables mediate this association. The aim of this study is to investigate the putative mediating role of illness representations, self-efficacy beliefs, and perceived social support on the relationship between illness severity and depression. A total of 75 consecutive patients with cardiovascular disease (80 % men; mean age = 65.44, SD = 10.20) were enrolled in an Italian hospital. Illness severity was measured in terms of left ventricular ejection fraction, whereas psychological factors were assessed using self-report questionnaires. The relationship between left ventricular ejection fraction and depression was mediated by identity illness perception, self-efficacy beliefs in managing cardiac risk factors, and perceived social support. The treatment of depression in cardiovascular disease patients may therefore benefit from a psychological intervention focused on patients' illness representations, self-efficacy beliefs, and their perceived social support.

Is "disease management" the answer to our problems? No! Population health management and (disease) prevention require "management of overall well-being".

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Cramm, Jane Murray; Nieboer, Anna Petra

2016-09-21

Disease management programs based on the chronic care model have achieved successful and long-term improvement in the quality of chronic care delivery and patients' health behaviors and physical quality of life. However, such programs have not been able to maintain or improve broader self-management abilities or social well-being, which decline over time in chronically ill patients. Disease management efforts, population health management initiatives and innovative primary care solutions are still mainly focused on clinical and functional outcomes and health behaviors (e.g., smoking cessation, exercise, and diet) failing to address individuals' overall quality of life and well-being. Individuals' ability to achieve well-being can be assessed with great specificity through the application of social production function (SPF) theory. This theory asserts that people produce their own well-being by trying to optimize the achievement of instrumental goals (stimulation, comfort, status, behavioral confirmation, affection) that provide the means to achieve the larger, universal goals of physical and social well-being. A shift in focus from the management of physical function, disease limitations, and lifestyle behaviors alone to an approach that fosters self-management abilities such as self-efficacy and resource investment as well as overall quality of life, is urgently needed. Disease management interventions should be aimed at adequately addressing all difficulties chronically ill patients face in life, such as the effects of pain and fatigue on the ability to maintain a job and social life and to participate in activities promoting physical and social well-being. Patients' ability to maintain engagement in stimulating work and social activities with the people who are important to them may be even more important than aspects of disease self-management such as blood pressure or glycemic control. Interventions should aim to make chronically ill patients capable of

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

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

Differences and similarities in the trajectories of self-esteem and positive and negative affect in persons with chronic illness: an explorative longitudinal study

Directory of Open Access Journals (Sweden)

Bonsaksen T

2016-08-01

Full Text Available Tore Bonsaksen,1 Anners Lerdal,2,3 Milada Cvancarova Småstuen,4 May Solveig Fagermoen3 1Department of Occupational Therapy, Prosthetics and Orthotics, Faculty of Health Sciences, Oslo and Akershus University College of Applied Sciences, Oslo, Norway; 2Research Department, Lovisenberg Diakonale Hospital, Oslo, Norway; 3Department of Nursing Science, Institute of Health and Society, Faculty of Medicine, University of Oslo, Oslo, Norway; 4Department of Nursing and Health Promotion, Faculty of Health Sciences, Oslo and Akershus University College of Applied Sciences, Oslo, Norway Background: Chronic illness is a risk factor for low self-esteem, and the research literature needs to include more studies of self-esteem and its development in chronic illness groups using longitudinal and comparative designs. The aim of this study was to explore the trajectories of self-esteem and of positive and negative affect in persons with morbid obesity and in persons with chronic obstructive pulmonary disease (COPD.Methods: Patient education course attendants in Norway having morbid obesity (n=139 or COPD (n=97 participated in the study. Data concerning self-esteem, positive and negative affect, and sociodemographic background were collected at the start and at the end of the patient education, with subsequent follow-ups at 3, 6, and 12 months. Data were analyzed using linear mixed models for repeated measures.Results: Taking all measurements into account, our data revealed a statistically significant increase in self-esteem for participants with morbid obesity but not for those with COPD. There were no significant differences in levels of negative and positive affect between the two groups, and the time-trajectories were also similar. However, participants in both groups achieved lower levels of negative affect for all the successive measurement points.Conclusion: An increase in self-esteem during the first year after the patient education course was observed

Illness Experience, Self-Determination, and Recreational Activities in Pediatric Asthma.

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Bingham, Peter M; Crane, Ian; Manning, Sarah Waterman

2017-06-01

Although asthma self-management depends on ongoing and accurate self-assessment by the patient, pediatric asthma patients have weak skills in the area of symptom perception. Before developing an asthma game targeted to improving asthma self-management and improved symptom awareness, we sought to identify gaps in existing games. To clarify the role of relatedness and autonomy in asthma health game design, we investigated symptom awareness, vocabulary, and self-determination through a series of semi-structured interviews with children suffering from asthma. Using self-determination theory as a framework, interviews were oriented to patients' illness experience and vocabulary related to symptomatology, as well as to recreational activities. Formative analysis of the interviews reveals attitudes, perceptions, and motivational factors arising in the context of childhood asthma, and it elucidates the images and vocabulary associated with both illness experience and recreational activities. Qualitative assessment of patient perspectives leads to specific recommendations for game design ideas that will support market entry of a spirometer-controlled game for children with asthma.

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

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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

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

Chronic Pain Among Homeless Persons with Mental Illness.

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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

[Prevention and management of refeeding syndrome in patients with chronic critical illness].

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Chen, Jun; Fan, Chaogang

2016-07-01

Nutritional support is an important means to treat the patients with chronic critical illness for commonly associated malnutrition. Refeeding syndrome is a serious complication during the process, mainly manifested as severe electrolyte with hypophosphataemia being the most common. Refeeding syndrome is not uncommon but it is often ignored. In our future clinical work, we need to recognize this chinical situation and use preventative and treatment measures. According to NICE clinical nutrition guideline, we discussed the risk factors, treatment methods and preventive measures of refeeding syndrome in patients with chronic critical illness. We argued that for patients with high risk refeeding syndrome, nutritional support treatment should be initially low calorie and slowly increased to complete requirement. Circulation capacity should be recovered, fluid balance must be closely monitored and supplement of vitamins, microelement, electrolytes should be noted. After the emergence of refeeding syndrome, we should reduce or even stop the calorie intake, give an active treatment for electrolyte disorder, provide vitamin B, and maintain the functions of multiple organs.

Living with a chronic illness - reaching out to others

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... 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, ...

Sleep quality in patients with chronic illness.

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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

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.

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

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

2009-08-01

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

Self-management support for peritoneal dialysis patients.

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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.

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

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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

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

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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.

Colorectal cancer patient's self-efficacy for managing illness-related problems in the first 2 years after diagnosis, results from the ColoREctal Well-being (CREW) study.

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Grimmett, Chloe; Haviland, Joanne; Winter, Jane; Calman, Lynn; Din, Amy; Richardson, Alison; Smith, Peter W F; Foster, Claire

2017-10-01

There is a growing emphasis on self-management of cancer aftercare. Little is known about patient's self-efficacy (confidence) to manage illness-related problems and how this changes over time. This paper describes the patterns of self-efficacy for managing illness-related problems amongst colorectal cancer patients in the 2 years following diagnosis. In this prospective cohort study, questionnaires were administered at baseline (pre-surgery), 3, 9, 15 and 24 months to 872 colorectal cancer patients. Self-efficacy (confidence to manage illness-related problems), anxiety, social support, affect, socio-demographics, physical symptoms and clinical and treatment characteristics were assessed. Group-based trajectory analysis identified trajectories of self-efficacy up to 24 months and predictors. Four trajectories of self-efficacy were identified: group 1 (very confident) 16.0% (95% confidence interval (CI) 10.7-21.3%), group 2 (confident) 45.6% (95% CI 40.3-51.0%), group 3 (moderately confident) 29.5% (95% CI 25.1-33.8%) and group 4 (low confidence) 8.9% (95% CI 6.4-11.4%). Greater deprivation, domestic status, more co-morbidities, worse fatigue and pain, lower positivity and greater negativity were significantly associated with lower self-efficacy. There was an increase in mean scores for self-efficacy over time for the whole sample, but this did not reach the cut-off for minimally important differences. At 2 years, the lowest level of confidence to manage was for symptoms or health problems. Around 40% of patients had suboptimal levels of confidence to manage illness-related problems with little change from the time of diagnosis across the four groups. Screening for self-efficacy at diagnosis would enable targeted, early intervention which could in turn enhance health-related quality of life.

Factors associated with self-esteem in persons with morbid obesity and in persons with chronic obstructive pulmonary disease: a cross-sectional study.

Science.gov (United States)

Bonsaksen, Tore; Fagermoen, May Solveig; Lerdal, Anners

2015-01-01

Living with chronic illnesses can be stressful and may negatively impact persons' self-esteem. Personal factors, like self-efficacy and illness perceptions, and also factors related to the environment, activity, and participation may be associated with self-esteem in chronic illness populations. This cross-sectional comparative study explored sociodemographic variables, work, physical activity, illness perceptions, and general self-efficacy in relation to self-esteem in persons with morbid obesity and in persons with chronic obstructive pulmonary disease (COPD). The study had a cross-sectional design. A total of 223 eligible participants were recruited from patient education courses, and data were collected at baseline. Self-esteem was measured with The Rosenberg self-esteem scale; the general self-efficacy scale was used to measure self-efficacy, and brief illness perception questionnaire was also used. This is an instrument assessing cognitions about the illness and emotional responses towards it. Multivariate linear regression was used in the statistical analyses. In obese participants (n = 134), higher self-esteem was associated with lower emotional response, a shorter timeline, and higher general self-efficacy. In COPD participants (n = 89), higher self-esteem was associated with higher general self-efficacy. The independent variables accounted for 42.9% (morbid obesity) and 49.4% (COPD) of the self-esteem variance. In participants in both illness groups, higher self-efficacy was associated with increased self-esteem. A shorter timeline and lower emotional response to illness was related to higher self-esteem only for the obese participants. The results indicate that believing in one's capacity to cope with everyday challenges is important for self-esteem in persons with morbid obesity and in persons with COPD, whereas illness perceptions related to the duration of illness and the coping with emotions also is important for self-esteem in persons with morbid

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

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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.

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

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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.

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.

The eHealth Enhanced Chronic Care Model: a theory derivation approach.

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Gee, Perry M; Greenwood, Deborah A; Paterniti, Debora A; Ward, Deborah; Miller, Lisa M Soederberg

2015-04-01

Chronic illnesses are significant to individuals and costly to society. When systematically implemented, the well-established and tested Chronic Care Model (CCM) is shown to improve health outcomes for people with chronic conditions. Since the development of the original CCM, tremendous information management, communication, and technology advancements have been established. An opportunity exists to improve the time-honored CCM with clinically efficacious eHealth tools. The first goal of this paper was to review research on eHealth tools that support self-management of chronic disease using the CCM. The second goal was to present a revised model, the eHealth Enhanced Chronic Care Model (eCCM), to show how eHealth tools can be used to increase efficiency of how patients manage their own chronic illnesses. Using Theory Derivation processes, we identified a "parent theory", the Chronic Care Model, and conducted a thorough review of the literature using CINAHL, Medline, OVID, EMBASE PsychINFO, Science Direct, as well as government reports, industry reports, legislation using search terms "CCM or Chronic Care Model" AND "eHealth" or the specific identified components of eHealth. Additionally, "Chronic Illness Self-management support" AND "Technology" AND several identified eHealth tools were also used as search terms. We then used a review of the literature and specific components of the CCM to create the eCCM. We identified 260 papers at the intersection of technology, chronic disease self-management support, the CCM, and eHealth and organized a high-quality subset (n=95) using the components of CCM, self-management support, delivery system design, clinical decision support, and clinical information systems. In general, results showed that eHealth tools make important contributions to chronic care and the CCM but that the model requires modification in several key areas. Specifically, (1) eHealth education is critical for self-care, (2) eHealth support needs to be

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

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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.

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

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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

A Pilot Randomized Controlled Trial of a Guided Self-Help Intervention to Manage Chronic Orofacial Pain.

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Goldthorpe, Joanna; Lovell, Karina; Peters, Sarah; McGowan, Linda; Nemeth, Imola; Roberts, Christopher; Aggarwal, Vishal R

2017-01-01

To conduct a pilot trial to test the feasibility of a guided self-help intervention for chronic orofacial pain. A pilot randomized controlled trial was conducted to compare the intervention with usual treatment. A total of 37 patients with chronic orofacial pain were randomized into either the intervention group (n = 19) or the usual treatment (control) group (n = 18). Validated outcome measures were used to measure the potential effectiveness of the intervention over a number of domains: physical and mental functioning (Short Form 36 [SF-36]); anxiety and depression (Hospital Anxiety and Depression Scale [HADS]); pain intensity and interference with life (Brief Pain Inventory [BPI]); disability (Manchester Orofacial Pain Disability Scale [MOPDS]); and illness behavior (Revised Illness Perceptions Questionnaire [IPQr]). Bootstrap confidence intervals were computed for the treatment effect (ES) posttreatment and at 3 months follow-up and adjusted for baseline values of the outcome measure by using analysis of covariance. At posttreatment and the 3-month follow-up, 11 participants in the intervention group and 7 in the control group failed to complete outcome measures. The intervention was acceptable and could be feasibly delivered face to face or over the telephone. Although the pilot trial was not powered to draw conclusions about the effectiveness, it showed significant (P orofacial pain. It showed potential effectiveness on outcome domains related to functioning and illness perception. Further research is needed to understand the cost effectiveness of the intervention for chronic orofacial pain.

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.

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.

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

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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).

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

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Nieboer, Anna Petra

2015-01-01

Abstract 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 (Pmanagement 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. (Population Health Management 2015;18:246–255) PMID:25607246

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

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

2016-05-01

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

Life skills programmes for chronic mental illnesses

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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

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

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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.

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

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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

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

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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.

Is "disease management" the answer to our problems? No! Population health management and (disease) prevention require "management of overall well-being"

OpenAIRE

Cramm, Jane; Nieboer, Anna

2016-01-01

textabstractBackground: Disease management programs based on the chronic care model have achieved successful and long-term improvement in the quality of chronic care delivery and patients' health behaviors and physical quality of life. However, such programs have not been able to maintain or improve broader self-management abilities or social well-being, which decline over time in chronically ill patients. Disease management efforts, population health management initiatives and innovative pri...

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

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

Effectiveness of neurofeedback therapy for anxiety and stress in adults living with a chronic illness: a systematic review protocol.

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Blaskovits, Farriss; Tyerman, Jane; Luctkar-Flude, Marian

2017-07-01

The objective of this review is to systematically examine the effectiveness of neurofeedback therapy for managing anxiety and stress in adults living with a chronic illness.The specific objectives are to identify which neurofeedback systems and/or protocols demonstrate effectiveness and determine the level of supporting evidence.The review question is as follows: What is the effectiveness of neurofeedback therapy for managing anxiety and stress in an adult population aged 18 years of age or older living with a chronic illness?

The "cruel radiance of what is": helping couples live with chronic illness.

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Weingarten, Kaethe

2013-03-01

The threat of no longer being the person one wants to be hovers over each ill person and plays out relationally. The dynamic interplay of this experience of self-loss and other-loss (Roos, 2002; Weingarten, 2012) has a significant impact on couples, both of whom may come to have both experiences. In this article, I focus on the couples' experience of self- and other-loss in the context of chronic illness, in which one person's experience flows into and informs the other's. In particular, I describe how asymmetric acknowledgment of self-loss and other-loss adds to the misery of couples who are already challenged by poor health. Physical pain also makes dealing with self- and other-loss harder. Therapists can serve couples better if they take a fully collaborative stance; appreciate the dilemmas of witnessing; help couples distinguish new trauma from retraumatization and fear; work with the weaver's dilemma and the boatman's plight (Weingarten, 2012); and are comfortable with discussion of end of life issues. © FPI, Inc.

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

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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.

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.

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.

'I am not the kind of woman who complains of everything': illness stories on self and shame in women with chronic pain.

Science.gov (United States)

Werner, Anne; Isaksen, Lise Widding; Malterud, Kirsti

2004-09-01

In this study, we explore issues of self and shame in illness accounts from women with chronic pain. We focused on how these issues within their stories were shaped according to cultural discourses of gender and disease. A qualitative study was conducted with in-depth interviews including a purposeful sampling of 10 women of varying ages and backgrounds with chronic muscular pain. The women described themselves in various ways as 'strong', and expressed their disgust regarding talk of illness of other women with similar pain. The material was interpreted within a feminist frame of reference, inspired by narrative theory and discourse analysis. We read the women's descriptions of their own (positive) strength and the (negative) illness talk of others as a moral plot and argumentation, appealing to a public audience of health personnel, the general public, and the interviewer: As a plot, their stories attempt to cope with psychological and alternative explanations of the causes of their pain. As performance, their stories attempt to cope with the scepticism and distrust they report having been met with. Finally, as arguments, their stories attempt to convince us about the credibility of their pain as real and somatic rather than imagined or psychological. In several ways, the women negotiated a picture of themselves that fits with normative, biomedical expectations of what illness is and how it should be performed or lived out in 'storied form' according to a gendered work of credibility as woman and as ill. Thus, their descriptions appear not merely in terms of individual behaviour, but also as organized by medical discourses of gender and diseases. Behind their stories, we hear whispered accounts relating to the medical narrative about hysteria; rejections of the stereotype medical discourse of the crazy, lazy, illness-fixed or weak woman.

Unravelling the Tensions Between Chronic Disease Management and End-of-Life Planning.

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Thorne, Sally; Roberts, Della; Sawatzky, Richard

2016-01-01

An increasing appreciation for the burden that chronic conditions represent for people and for societies has triggered an evolving body of popular and professional conceptualizations of the nature of the chronic disease challenge. In this discussion article, we trace the trajectory of thinking about chronic illness care, surfacing underlying assumptions and drivers that have shaped current dominant models of service delivery. We note significant gaps in these conceptualizations, especially with respect to the reality that many chronic conditions are life limiting. Contrasting chronic disease theorizing with the conversations that have arisen around end-of-life care for other kinds of health conditions, we argue for a shift in our thinking to accommodate the implications of life limitation in our service delivery planning. We see significant leadership potential in optimizing the role nurses can play across the chronic disease trajectory by integrating the healthy optimism of self-care management with the profound compassion of a person-centered palliative approach.

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

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

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

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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.

Self-esteem of young adults with chronic health conditions: appraising the effects of perceived impact.

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Ireys, H T; Gross, S S; Werthamer-Larsson, L A; Kolodner, K B

1994-12-01

The relationships between selected condition characteristics and self-esteem were investigated in a randomly drawn, community-based sample of 286 young adults with chronic illnesses and disabilities. Whether appraisals of the impact of the condition mediated relationships between condition characteristics and self-esteem, as measured by the Rosenberg Self-Esteem Scale, was also measured. As a group, the youth in this sample reported positive self-esteem. When sociodemographic and condition-related variables were considered simultaneously, maternal education, unpredictability of symptoms, prognosis, sensory impairment, and the presence of a co-occurring learning disability were found to have direct effects on esteem. Perceived impact mediated the relationship between condition characteristics and self-esteem. The results are discussed in relation to the role of impact appraisal in determining the emotional well-being of young adults with chronic illnesses.

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

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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.

The Relationship Between Provider Competence, Content Exposure, and Consumer Outcomes in Illness Management and Recovery Programs.

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McGuire, Alan B; White, Dominique A; Bartholomew, Tom; Flanagan, Mindy E; McGrew, John H; Rollins, Angela L; Mueser, Kim T; Salyers, Michelle P

2017-01-01

Provider competence may affect the impact of a practice. The current study examined this relationship in sixty-three providers engaging in Illness Management and Recovery with 236 consumers. Improving upon previous research, the present study utilized a psychometrically validated competence measure in the ratings of multiple Illness Management and Recovery sessions from community providers, and mapped outcomes onto the theory underlying the practice. Provider competence was positively associated with illness self-management and adaptive coping. Results also indicated baseline self-management skills and working alliance may affect the relationship between competence and outcomes.

Self-help/mutual aid as active citizenship associations: a case-study of the chronically ill in Italy.

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Giarelli, Guido; Spina, Elena

2014-12-01

Contrary to the most widespread conception that considers self-help/mutual aid as a component of the 'third sector', an approach is proposed which assumes, on the basis of the specific nature of the social bond and of the social action that characterizes it, it can be more properly considered as part of the 'new civil society' as it has been configured during the time in Western societies. This implies its location in the public non-state and non-systemic space that it has been created in the specific form of associations of citizenship. An interuniversity research project is then presented which, using this approach, studied the case of self-help/mutual aid associations for the chronically ill in Italy, offering some of the findings regarding the origin, structural characteristics, geographical distribution and activities of these associations in order to at least partially verify the heuristic value of this approach and its implications for the processes of reform of the health systems. Copyright © 2014 Elsevier Ltd. All rights reserved.

Psychosocial and nonclinical factors predicting hospital utilization in patients of a chronic disease management program: a prospective observational study.

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Tran, Mark W; Weiland, Tracey J; Phillips, Georgina A

2015-01-01

Psychosocial factors such as marital status (odds ratio, 3.52; 95% confidence interval, 1.43-8.69; P = .006) and nonclinical factors such as outpatient nonattendances (odds ratio, 2.52; 95% confidence interval, 1.22-5.23; P = .013) and referrals made (odds ratio, 1.20; 95% confidence interval, 1.06-1.35; P = .003) predict hospital utilization for patients in a chronic disease management program. Along with optimizing patients' clinical condition by prescribed medical guidelines and supporting patient self-management, addressing psychosocial and nonclinical issues are important in attempting to avoid hospital utilization for people with chronic illnesses.

Self-Management Patient Education and Weight Loss

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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.…

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

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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.

Managing childhood chronic illness: parent perspectives and implications for parent-provider relationships.

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Kratz, Lyn; Uding, Nancy; Trahms, Cristine M; Villareale, Nanci; Kieckhefer, Gail M

2009-12-01

When children have special health care needs, parents assume the roles of care coordinator, medical expert, and systems advocate as well as their typical parenting roles. They face many challenges in managing their child's chronic condition in the context of everyday life. Health care providers are uniquely positioned to assist parents in meeting those challenges and to promote parent competency and confidence in their child's care. The data for this analysis were collected during classes for parents of children with chronic conditions who took part in a randomized controlled study of a curriculum's effectiveness. During facilitated discussions, parents discussed challenges they faced and generated strategies they found helpful. Qualitative data analysis revealed dominant themes across subject areas. Challenges included social isolation, strained relationships and ongoing frustrations with health care and educational systems. Helpful strategies focused on being prepared, connecting with peers, becoming an advocate, developing partnerships and caring for one's self. Implications for health care providers include: understanding common challenges parents face; promoting parent-to-parent connections; and building partnerships with parents and their children with special needs.

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

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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.

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

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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.

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

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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.

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

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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.

Social networks, work and network-based resources for the management of long-term conditions: a framework and study protocol for developing self-care support

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Kapadia Dharmi

2011-05-01

Full Text Available Abstract Background Increasing the effective targeting and promotion of self-care support for long-term conditions requires more of a focus on patient contexts and networks. The aim of this paper is to describe how within a programme of research and implementation, social networks are viewed as being centrally involved in the mobilisation and deployment of resources in the management of a chronic condition. This forms the basis of a novel approach to understanding, designing, and implementing new forms of self-management support. Methods Drawing on evidence syntheses about social networks and capital and the role of information in self-management, we build on four conceptual approaches to inform the design of our research on the implementation of self-care support for people with long-term conditions. Our approach takes into consideration the form and content of social networks, notions of chronic illness work, normalisation process theory (NPT, and the whole systems informing self-management engagement (WISE approach to self-care support. Discussion The translation and implementation of a self-care agenda in contemporary health and social context needs to acknowledge and incorporate the resources and networks operating in patients' domestic and social environments and everyday lives. The latter compliments the focus on healthcare settings for developing and delivering self-care support by viewing communities and networks, as well as people suffering from long-term conditions, as a key means of support for managing long-term conditions. By focusing on patient work and social-network provision, our aim is to open up a second frontier in implementation research, to translate knowledge into better chronic illness management, and to shift the emphasis towards support that takes place outside formal health services.

Association of Transition Readiness to Intentional Self-Regulation and Hopeful Future Expectations in Youth With Illness.

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Hart, Laura C; Pollock, McLean; Hill, Sherika; Maslow, Gary

Little is known about how transition readiness relates to other developmental skills of adolescence in youth with chronic illness. Better understanding of how transition readiness relates to these other developmental skills could lead to a broader array of tools to improve transition readiness. Intentional self-regulation (ISR) and hopeful future expectations (HFE) are 2 developmental skills of adolescence that improve with participation in developmental programming and thus are modifiable. We explored associations between transition readiness, as measured by the Transition Readiness Assessment Questionnaire 29 (TRAQ-29) and ISR and HFE in youth with chronic illness recruited from a variety of subspecialty clinics from a major southeast medical center. A total of 71 adolescents with chronic illness were included in the analysis. The TRAQ-29 Self-Advocacy domain showed positive associations to both ISR (P = .03) and HFE (P = .009). In addition, the TRAQ-29 overall had positive associations to HFE (P = .04). The significant associations between TRAQ-29 Self-Advocacy domain scores and ISR and HFE suggest that transition readiness is developing within the context of other developmental areas in adolescence. More work is needed to see if the programming that improves these other developmental skills might also improve transition readiness. Copyright © 2016 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.

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

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

2017-01-01

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

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

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Quach, Jon; Barnett, Tony

2015-01-01

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

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

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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

The Solace of an Uncertain Future: Acute Illness, the Self, and Self-Care.

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Weingarten, Kaethe; Worthen, Miranda

2018-03-01

"Take care of yourself" may be one of the most ubiquitous phrases spoken to people who are ill or to their caretakers. Yet few people who offer it as a balm consider what the self experience is of the person to whom the injunction is offered. We unravel some of the paradoxes inherent in the phrase, illustrating complexities that arise in the context of a life-threatening diagnosis. To illustrate the relational nature of the self, we analyze a partial transcript of an interview conducted in 1988 with the authors-a family therapist mother who had recently undergone surgery for breast cancer and her then 9-year-old daughter. We also examine the role of time in the interview. We propose that unlike PTSD when the past invades the present, in life-threatening illness the future is foreclosed, leading to distortions in current perception and behavior. The second author presents a follow-up to the interview and relates it to her current experience as a mother with chronic health issues. We close with suggestions for clinicians. © 2018 Family Process Institute.

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

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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

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

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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

The impact of experiential avoidance on the relations between illness representations, pain catastrophising and pain interference in chronic pain.

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Karademas, Evangelos C; Karekla, Maria; Flouri, Magdalini; Vasiliou, Vasilis S; Kasinopoulos, Orestis; Papacostas, Savvas S

2017-12-01

The aim of this study was to examine the effects of experiential avoidance (EA) on the indirect relationship of chronic pain patients' illness representations to pain interference, through pain catastrophising Design and main outcome measure: The sample consisted of 162 patients diagnosed with an arthritis-related or a musculoskeletal disorder. The effects of EA on the pathway between illness representations, pain catastrophising and pain interference were examined with PROCESS, a computational tool for SPSS Results: After controlling for patient and illness-related variables and pain severity, the 'illness representations-pain catastrophising-pain interference' pathway was interrupted at the higher levels of EA. The reason was that, at the high levels of EA, either the relation of illness representations to pain catastrophising or the relation of pain catastrophising to pain interference was not statistically significant. The findings indicate that EA is not a generalised negative response to highly aversive conditions, at least as far as the factors examined in this study are concerned. EA may rather reflect a coping reaction, the impact of which depends on its specific interactions with the other aspects of the self-regulation mechanism. At least in chronic pain, EA should become the focus of potential intervention only when its interaction with the illness-related self-regulation mechanism results in negative outcomes.

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

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

2013-02-01

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

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

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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…

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

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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

The self-management balancing act of spousal care partners in the case of Parkinson's disease.

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Berger, Sue; Chen, Tiffany; Eldridge, Jenna; Thomas, Cathi A; Habermann, Barbara; Tickle-Degnen, Linda

2017-12-12

Living with and caring for someone with chronic illness can lead to limitations in activity and social participation for the care partner. Past research emphasizes the importance of care partners taking care of themselves physically and emotionally so they can stay healthy to support the care recipient. There is little information regarding how the care partner takes care of their own social lives. The purpose of this study was to explore the concept of social self-management from the perspective of spousal care partners of people with Parkinson's disease. Twenty spousal care partners of people with Parkinson's disease were interviewed three times. A grounded theory approach informed data analysis. Findings that emerged from the data focused on balance in activities, support, and emotions and were summarized into three main themes: (1) Activities: Caregiving and beyond; (2) Strategies to support self and spouse; and (3) Emotional impact: Burden and compassion. This research shows that care partners want to retain social participation and provides support for the importance of addressing the socio-emotional needs of care partners of people with a chronic disease. Interventions that guide care partners to take care of their spectrum of needs may lead to healthier, positive relationships. Implications for rehabilitation The focus of rehabilitation is often on the person diagnosed with the chronic condition. Living with and caring for someone with a chronic illness, such as Parkinson's disease, can lead to limitations in activity and social participation for the care partner. Including care partners in the rehabilitation process is key to helping maintain their health and well-being. Learning caregiving and self-management strategies may help care partners support their loved ones while staying socially engaged.

Implicit self-stigma in people with mental illness.

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Rüsch, Nicolas; Corrigan, Patrick W; Todd, Andrew R; Bodenhausen, Galen V

2010-02-01

People with mental illness often internalize negative stereotypes, resulting in self-stigma and low self-esteem ("People with mental illness are bad and therefore I am bad, too"). Despite strong evidence for self-stigma's negative impact as assessed by self-report measures, it is unclear whether self-stigma operates in an automatic, implicit manner, potentially outside conscious awareness and control. We therefore assessed (i) negative implicit attitudes toward mental illness and (ii) low implicit self-esteem using 2 Brief Implicit Association Tests in 85 people with mental illness. Implicit self-stigma was operationalized as the product of both implicit measures. Explicit self-stigma and quality of life were assessed by self-report. Greater implicit and explicit self-stigma independently predicted lower quality of life after controlling for depressive symptoms, diagnosis, and demographic variables. Our results suggest that implicit self-stigma is a measurable construct and is associated with negative outcomes. Attempts to reduce self-stigma should take implicit processes into account.

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

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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…

The (un)managed self: paradoxical forms of agency in self-management of bipolar disorder.

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Weiner, Talia

2011-12-01

Self-management of mental illness is a therapeutic paradigm that draws on a distinctly biomedical conceptualization of the isolability of personhood from pathology. This discourse posits a stable and rational patient/consumer who can observe, anticipate, and preside over his disease through a set of learned practices. But in the case of bipolar disorder, where the rationality of the patient is called into question, the managing self is elusive, and the disease that is managed coincides with the self. While humanist critiques of the biomedical model as applied to mental illness have argued that its logic fatalistically denies patients intentionality and effectiveness (Luhrmann, Of Two Minds: The Growing Disorder in American Psychiatry, 2000), biomedical proponents claim that psychiatry's way of envisioning the body as under the control of the intentional mind actually returns agency to the patient/consumer. Rose (The Psychiatric Gaze, 1999) remarks that biomedical models have the potential to "[open] that which was considered natural to a form of choice" (p. 37), and that techniques of medical self-control help constitute the free embodied liberal subject who is obliged to calculate and choose. Through an examination of clinical literature as well as the practices and narratives of members of a bipolar support group, this paper explores ethnographically the possibilities for subjectivity and agency that are conditioned or foreclosed by the self-management paradigm, which seems to simultaneously confer and deny rational selfhood to bipolar patients. To express their expertise as rational self-managers, patients/consumers must, paradoxically, articulate constant suspicion toward their present thoughts and emotions, and distrust of an imagined future self. I argue that through their self-management practices, bipolar support group members model provisional and distributed forms of agency based on an elusive, discontinuous, and only partially knowable or controllable

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

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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

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

Consumer factors predicting level of treatment response to illness management and recovery.

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White, Dominique A; McGuire, Alan B; Luther, Lauren; Anderson, Adrienne I; Phalen, Peter; McGrew, John H

2017-12-01

This study aims to identify consumer-level predictors of level of treatment response to illness management and recovery (IMR) to target the appropriate consumers and aid psychiatric rehabilitation settings in developing intervention adaptations. Secondary analyses from a multisite study of IMR were conducted. Self-report data from consumer participants of the parent study (n = 236) were analyzed for the current study. Consumers completed prepost surveys assessing illness management, coping, goal-related hope, social support, medication adherence, and working alliance. Correlations and multiple regression analyses were run to identify self-report variables that predicted level of treatment response to IMR. Analyses revealed that goal-related hope significantly predicted level of improved illness self-management, F(1, 164) = 10.93, p consumer-level predictors of level of treatment response have not been explored for IMR. Although 2 significant predictors were identified, study findings suggest more work is needed. Future research is needed to identify additional consumer-level factors predictive of IMR treatment response in order to identify who would benefit most from this treatment program. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

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

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

2003-07-07

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

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.

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

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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.

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

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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.

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...

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

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Rittenhouse, Diane R; Robinson, James C

2006-01-01

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

Denial of illness in schizophrenia as a disturbance of self-reflection, self-perception and insight.

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Bedford, Nicholas J; David, Anthony S

2014-01-01

A substantial proportion of schizophrenia patients deny aspects of their illness to others, which may indicate a deeper disturbance of 'insight' and a self-reflection deficit. The present study used a 'levels-of-processing' mnemonic paradigm to examine whether such patients engage in particularly brief and shallow self-reflection during mental illness-related self-evaluation. 26 schizophrenia patients with either an overall acceptance or denial of their illness and 25 healthy controls made timed decisions about the self-descriptiveness, other-person-descriptiveness and phonological properties of mental illness traits, negative traits and positive traits, before completing surprise tests of retrieval for these traits. The acceptance patients and denial patients were particularly slow in their mental illness-related self-evaluation, indicating that they both found this exercise particularly difficult. Both patient groups displayed intact recognition but particularly reduced recall for self-evaluated traits in general, possibly indicating poor organisational processing during self-reflection. Lower recall for self-evaluated mental illness traits significantly correlated with higher denial of illness and higher illness-severity. Whilst explicit and implicit measures of self-perception corresponded in the healthy controls (who displayed an intact positive>negative 'self-positivity bias') and acceptance patients (who displayed a reduced self-positivity bias), the denial patients' self-positivity bias was explicitly intact but implicitly reduced. Schizophrenia patients, regardless of their illness-attitudes, have a particular deficit in recalling new self-related information that worsens with increasing denial of illness. This deficit may contribute towards rigid self-perception and disturbed self-awareness and insight in patients with denial of illness. © 2013.

Health Technologies for the Improvement of Chronic Disease Management

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Nikitovic, M; Brener, S

2013-01-01

Background As part of ongoing efforts to improve the Ontario health care system, a mega-analysis examining the optimization of chronic disease management in the community was conducted by Evidence Development and Standards, Health Quality Ontario (previously known as the Medical Advisory Secretariat [MAS]). Objective The purpose of this report was to identify health technologies previously evaluated by MAS that may be leveraged in efforts to optimize chronic disease management in the community. Data Sources The Ontario Health Technology Assessment Series and field evaluations conducted by MAS and its partners between January 1, 2006, and December 31, 2011. Review Methods Technologies related to at least 1 of 7 disease areas of interest (type 2 diabetes, coronary artery disease, atrial fibrillation, chronic obstructive pulmonary disease, congestive heart failure, stroke, and chronic wounds) or that may greatly impact health services utilization were reviewed. Only technologies with a moderate to high quality of evidence and associated with a clinically or statistically significant improvement in disease management were included. Technologies related to other topics in the mega-analysis on chronic disease management were excluded. Evidence-based analyses were reviewed, and outcomes of interest were extracted. Outcomes of interest included hospital utilization, mortality, health-related quality of life, disease-specific measures, and economic analysis measures. Results Eleven analyses were included and summarized. Technologies fell into 3 categories: those with evidence for the cure of chronic disease, those with evidence for the prevention of chronic disease, and those with evidence for the management of chronic disease. Conclusions The impact on patient outcomes and hospitalization rates of new health technologies in chronic disease management is often overlooked. This analysis demonstrates that health technologies can reduce the burden of illness; improve patient

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