Illness Self-management Research Articles

Journal Digest

Journal Digest

Constructing the moral body: Self-care among older adults with multiple chronic conditions

Older adults are increasingly living with and managing multiple chronic conditions. The self-management of illness occurs in a social and political context in which the responsibility for health has shifted from the State to the individual, who is expected to be an active consumer of health care. Although there has been extensive investigation of the management of single chronic conditions, the realities of living with multiple morbidities have largely been ignored, particularly among older adults. Addressing this gap, our study entailed in-depth interviews with 35 older Canadian adults, aged 73 to 91, who had between three and 14 chronic conditions. Self-care emerged as a primary means by which our participants managed their illnesses. Specifically, all of our participants were engaged in some form of self-care in order to cope with often debilitating physical symptoms and functional losses. They also utilized self-care because they had reached the limits of available medical treatment options. Finally, our participants argued that self-care was a moral responsibility that was underscored by gendered motivations. Whereas the men tended to emphasize the importance of self-care for the achievement of masculine ideals of control and invulnerability, the women suggested that self-care allowed them to maintain feminine norms of selflessness and sensitivity to the needs of others. In this way, self-care enabled the men and women to reframe their aging, chronically ill bodies as moral, socially valued bodies. We discuss our findings in relation to the extant research and theorizing pertaining to self-care, gender, and healthism.

The Politics of Self-Craft

As the global challenges posed by chronic, noncommunicable diseases (NCDs) run into longer life expectancies and restrictive fiscal environments, public health programs must respond to these issues. In doing so, health practitioners have framed NCDs as apolitical and largely the product of an individual’s risk behavior. Consequently, governance strategies embraced by public health to address NCDs emphasize the role of the private sector, including opportunities for patient self-management of illness. The Expert Patients Programme (EPP), an initiative of the U.K. Department of Health, applies to a range of chronic conditions. Via a case analysis of the EPP, this article argues that public health governance of NCDs is increasingly a project of individuals’ self-governance, and that although the techniques of the EPP are constructed as politically neutral, they rather demonstrate a pervasive neoliberal political rationality: in devolving public health responsibilities to the private sector and in constructing the healthy, active participant whose primary aim is to return to an economically productive life.

A Randomized Controlled Trial of Effects of Wellness Recovery Action Planning on Depression, Anxiety, and Recovery

The purpose of this study was to test the effectiveness of the Wellness Recovery Action Planning (WRAP) self-management intervention in reducing depression and anxiety and in increasing self-perceived recovery among individuals with a serious mental illness. Participants were recruited from outpatient community mental health settings in six Ohio communities: Canton, Cleveland, Columbus, Dayton, Lorain, and Toledo. With a single-blind, randomized controlled trial design, 519 individuals were assigned to WRAP or to services as usual and assessed at baseline and at two- and eight-month follow-ups. The intervention consisted of eight weekly 2.5-hour sessions delivered by peers in recovery from serious mental illness who were certified WRAP educators. The mean number of WRAP sessions attended was five, and fidelity ranged from 90% to 92%. Analysis using mixed-effects random regression revealed interactions of study condition by time in each outcome area. Compared with the control group, intervention participants reported significantly greater reduction over time in Brief Symptom Inventory depression and anxiety subscales and significantly greater improvement in total Recovery Assessment Scale scores as well as the subscales measuring personal confidence and goal orientation. Training in mental illness self-management reduced depression and anxiety and improved participants' self-perceived recovery over time. Results confirmed the importance of WRAP as part of a group of evidence-based, recovery-oriented interventions.

Illness perception, stress, religiosity, depression, social support, and self management of diabetes in Indonesia

This is an integration of three studies on type 2 diabetes. In this study, diabetes was seen in relation to illness perception, stress, depression, social support, and self management. The studies conducted using quantitative approach, employing 68 participants, aged between 40–75 years old. Interviewer-administered questionnaires were used for the data collection. Sobel test was employed to examine the mediation states of the variables in the three quantitative studies, and regression analysis was then executed for hypotheses testing. Results show that self-acceptance were significantly related to depression (r:-.14, p .05). Religiosity approved to be significantly related to the stress (r:-.69, p<.05), mediated by self acceptance (r:-.36, p<.05). “Easily being tired in work, compared to the previous condition” was identified by most of the study participants as the cause of stress. It was also discovered that illness perception and coping strategies were not having a direct association with self-management in general. This study suspected that there was multicollinearity among 8 sub-components of illness perception, coping strategies and self-management. Conclusion: self-acceptance is the most important among others; and that participants, with family, need to have correct knowledge on the nature of the illness and its management.

The psychometric properties of the Illness Management and Recovery scale in a large American public mental health system

The Illness Management and Recovery (IMR) scale was created to measure recovery outcomes produced by the IMR program. However, many other mental health care programs are now designed to impact recovery-oriented outcomes, and the IMR has been identified as a potentially valuable measure of recovery-oriented mental health outcomes. The purpose of this study was to examine the psychometric properties and structural validity of the IMR clinician scale within a variety of therapeutic modalities other than IMR in a large multiethnic sample (N=10,659) of clients with mental illness from a large U.S. county mental health system. Clients completed the IMR on a single occasion. Our estimates of internal consistency were stronger than those found in previous studies (α=0.82). The scale also related to other measures of theoretically similar constructs, supporting construct and criterion validity claims. Additionally, confirmatory factor analyses supported the multidimensional representation of the IMR clinician scale. The three-factor model of illness self-management and recovery was represented by dimensions of recovery, management, and substance use. These reliable psychometric properties support the use of both the original one-factor and revised three-factor models to assess illness self-management and recovery among a broad spectrum of clients with mental illness.

Integrated Illness Management and Recovery: A Program for Integrating Physical and Psychiatric Illness Self-Management in Older Persons with Severe Mental Illness

Older persons with severe mental illness (SMI) are prone to the development of multiple physical illnesses, which are often poorly recognized and treated and which can threaten the quality of their lives, diminish their ability to live in the community, and lead to premature mortality. To address this issue, the Illness Management and Recovery (IMR) program, a standardized program for teaching psychiatric illness self-management skills, was modified to develop the Integrated IMR (I-IMR) program to include the teaching of physical illness self-management by an I-IMR specialist, and medical needs assessment and monitoring provided by an on-site nurse health case manager. A group of 8 older clients with SMI and a comorbid medical condition participated in an open clinical trial to evaluate the feasibility of the program and to explore potential clinical benefits. Participation in the program was high, with 71% of the clients who participated in at least one session completing a total of at least 10 I-IMR ses...

Communication Commentary: Psychiatric Advance Directives

Communication Commentary: Psychiatric Advance Directives

International efforts at implementing and advancing the recovery model

For almost a century the medical model has been the overarching framework for mental healthcare but since the 1980s it has been challenged by a consumer/survivor movement. Central to this revolution is the recovery model, which suggests that mental illness is only one of many facets of the life of an individual with mental illness, and that a full, meaningful life is possible despite illness (Anthony, 1993). The medical model emphasises the role of symptomatic improvements and functional status, and considers recovery as an ‘outcome’ or ‘end state’, at which point symptoms are remitted and community functioning is restored. In contrast, the recovery model underscores hope, empowerment, the self-management of illness and some aspects of community functioning, such as social support and role functioning, which operate in a non-linear fashion throughout the recovery journey.

Chronic condition self-management: Working in partnership toward appropriate models for age and culturally diverse clients

Chronic conditions place a significant burden on the Australian health care system, and this burden continues to increase. This literature review examines the concepts of chronic illness and chronic condition self-management (CCSM), particularly in the context of asthma. It explores the implementation of, and barriers to, CCSM in the modern health care system with a focus on CCSM in children and adolescents, and the differences that need to be recognized when dealing with Indigenous Australian children.

An Online Approach to Providing Chronic Illness Self-Management Information

The purpose of this article was to describe an online approach to providing chronic illness self-management information to rural women with chronic illness. To self-manage chronic illness, individuals require information about their conditions. For those in rural areas who have limited access to health services, computer-based interventions are a means of providing this information. Participants were randomly assigned either to an 11-week computer intervention in which they completed nine online self-study health teaching units related to self-management, or to a control group. The health teaching units were positively rated as being helpful in managing their chronic illnesses, with scores ranging from 4.09 to 4.84 on a six-point scale. Perceptions of computer skills increased significantly for the intervention group, with no increase in the control group. Computer-based programs can be an effective approach to providing health information to rural women with chronic conditions that will assist them in their self-management efforts.

Communication Commentary: Effective Patient-Centered Communication

Communication Commentary: Effective Patient-Centered Communication

Evaluation of an Emerging Research Center: Lessons Learned

PROBLEM STATEMENT: Rigorous evaluation assures that research endeavors meet their purpose and achieve stated goals. This is especially true for federally funded exploratory research centers, which tend to be more complex due to the involvement of multiple, interdisciplinary investigators. This study provides an overview of the approach used to develop an evaluation strategy and reports the lessons learned during the initial development of the Center for Ohana Self-Management of Chronic Illness (COSMCI) at the University of Hawai'i at Mānoa School of Nursing and Dental Hygiene. The COSMCI is composed of an interdisciplinary team of researchers and practitioners and aims to advance knowledge in the field of self management of chronic disease in the community setting. APPROACH: A systematic approach was utilized that included formative and summative strategies for ongoing evaluation. The problem was solved by addressing five key concerns: (1) development of research structure, (2) observing the process of the research pilot projects, (3) scholarly activity of COSMCI faculty, (4) dissemination and translation and (5) sustainability prospects. The method of research included formulating process strategies and determine if the plans for developing the Center were followed and whether these plans were effective. Interviews were also conducted at year one and at mid-point though the project. RESULTS: Themes that emerged from our evaluation included inclusion, timelines, realistic expectations, ongoing evaluation and preparing for changes in the team. This provided timely recognition of successes and challenges and facilitated a rapid response for interventions especially during the early development stage of the center. CONCLUSION/RECOMMENDATIONS: Effective development of a successful Center is highly dependent upon having a strong evaluation process in place that can inform ongoing development. An exploratory research center requires ongoing evaluation that allows for celebration of successes, as well as early identification of problems and rapid response.

Effectiveness of illness self-management programmes for adults with schizophrenia and other psychotic disorders: a systematic review.

JBI Evidence Synthesis is an international peer-reviewed, online journal that publishes manuscripts encompassing evidence synthesis and healthcare. JBI Evidence Synthesis seeks to disseminate rigorous, high-quality research that provides the best available evidence to inform policy and practice through the science and conduct of systematic and scoping reviews. The journal publishes systematic and scoping review protocols, diverse types of systematic reviews, and scoping reviews covering multi-disciplinary healthcare-related topics that follow methodology and methods developed by JBI. The journal also publishes editorials, letters to the editor as well as original applied research and discussion papers examining synthesis methods. JBI Evidence Synthesis does not accept systematic reviews of in vitro or animal studies. JBI Evidence Synthesis co-publishes JBI methodology and methods with its partner JBI journal, JBI Evidence Implementation.

Improving Propensity for Patient Self-Advocacy Through Wellness Recovery Action Planning: Results of a Randomized Controlled Trial

A fundamental aspect of successful illness self-management for people with serious mental illnesses is the ability to advocate for themselves in health and rehabilitation settings. This study reports findings from a randomized controlled trial comparing propensity for patient self-advocacy among those who received a peer-led mental illness self-management intervention called Wellness Recovery Action Planning (WRAP) and those who received usual care. Outcomes were self-reported engagement in self-advocacy with service providers, and the relationship between patient self-advocacy and other key recovery outcomes. In a multivariable analysis, at immediate post-intervention and 6-month follow-up, WRAP participants were significantly more likely than controls to report engaging in self-advocacy with their service providers. Higher self-advocacy also was associated with greater hopefulness, better environmental quality of life, and fewer psychiatric symptoms among the intervention group. These findings provide additional support for the positive impact of peer-led illness self-management on mental health recovery.

The Integration of Chronic Illness Self-Management

Self-management is crucial for people living with chronic diseases, but the actual process of integrating self-management has not been explored in depth. In this article, we investigate the integration of self-management into the lives of people with chronic illness. In this longitudinal study, we used an interpretive description approach. Twenty-one individuals were interviewed regularly during the first 3 years after they were diagnosed with a chronic condition. We found self-management integration to be an ongoing process that included four phases: seeking effective self-management strategies, considering costs and benefits, creating routines and plans of action, and negotiating self-management that fits one's life. The participants managed the phases according to their context, e.g., illness experience, life situation, personal beliefs, and social support. Health care providers should therefore facilitate self-management integration by providing support that is adjusted to the person's phase of self-management integration and life context.

Self-management of chronic pain in Malaysian patients: effectiveness trial with 1-year follow-up.

Self-management of chronic illnesses has been widely recognised as an important goal on quality of life, health service utilisation and cost grounds. This study describes the first published account on the application of this approach to people suffering from chronic pain conditions in a Southeast Asian country, Malaysia. A heterogeneous sample of chronic pain patients in Malaysia attended a 2-week cognitive–behavioural pain management programme (PMP) aimed at improving daily functional activities and general psychological well-being. Complete datasets from 70 patients out of 102 patients who attended 11 programmes conducted from 2002 to 2007, as well as the 1-month and 1-year follow-up sessions at the hospital clinic, are reported. The pre- to post-treatment results on self-report measures indicate that significant gains were achieved on the dimensions of pain, disability and psychological well-being. These gains were maintained at both 1-month and 1-year follow-ups. The results mirror those reported from similar interventions in Europe and North America and indicate the concept of self-management of a chronic illness is acceptable and meaningful to Asian patients. Importantly, the achieved outcomes were independent of gender and ethnic group status.

Abstract 18299: Perceived Social Support Operates Through Self-Efficacy to Positively Influence Heart Failure Self-Care Management

Background: Studies show a modest positive association between social support and chronic illness self-management. However, the extent to which social support influences Heart Failure (HF) self-care and whether HF self-efficacy mediates this relationship is not well understood. Methods: We conducted a cross-sectional survey of community-dwelling patients with systolic or diastolic HF seen in a university internal medicine or cardiology clinic. We separately assessed HF self-care maintenance (i.e. engaging in behaviors to help maintain physiologic stability- medication adherence and frequent weighing) and self-care management (i.e. decision-making in response to symptoms- recognizing signs of fluid overload and adjusting diuretic dose) using the Self-Care of Heart Failure Index (SCHFI). Emotional/informational support was assessed using the Medical Outcomes Study social support survey. HF self-efficacy was assessed using the SCHFI self-efficacy subscale. We used linear regression to examine differences in self-management behaviors, adjusting for age, race, gender, marital status, education, income, and self-rated health. Mediation analysis was done according to Baron &amp; Kenny method. Results: Of the 146 participants (mean age 61yrs; 51% female; 43% African Americans), mean (SD) emotional/information support and self-efficacy were 82.4 (SD 19.8) and 64.5 (SD 17.0), respectively; 33% had “adequate” HF self-efficacy (scores ≥ 70). In multivariable analysis, more emotional/informational support was associated with better self-care maintenance (B coefficient 0.14, SE 0.60; p=0.03). More emotional/information support was associated with better self-care management (B coefficient 0.23, SE 0.11; p=0.04) in bivariate but not multivariable analysis (B coefficient 0.18, SE 0.12; p=0.12). HF self-efficacy strongly mediates the association between emotional/informational support and self-care maintenanc e, but not management. Conclusion: Emotional/informational support is more strongly associated with behaviors to maintain physiologic stability than with decision-making related to symptom management. Greater self-efficacy is a mechanism by which emotional/informational support influences HF self-care management .

‘It wouldn’t be me if I didn’t have bipolar disorder’: managing the shift in self-identity with bipolar disorder

inder m, crowe m, moor s, carter j, luty s & joyce p (2011) Journal of Nursing and Healthcare of Chronic Illness 3, 427–435 ‘It wouldn’t be me if I didn’t have bipolar disorder’: managing the shift in self-identity with bipolar disorder Aims and objectives. To explore how bipolar disorder is integrated into one’s sense of self and identity. Method. Two case studies are drawn from a larger randomised controlled trial of two psychotherapies for bipolar disorder. Data were collected during 18 months of psychotherapy from 2006 to 2009. The study used a purposive sampling process by selecting two cases from different developmental stages and age of onset of mood disorder. The case studies address the questions: How does bipolar disorder impact on one’s sense of self? and how do two people from different age groups integrate bipolar disorder into their identity? The material was drawn from therapy sessions that were taped, transcribed and analysed. Results. Bipolar disorder created confusing contradictory experiences of self, compounded by the external consequences on relationships, how others viewed them, and disruptions in areas such as education and work. Self-acceptance encompassed a process reflecting ambivalence, experiencing grief and loss and acknowledging limitations. Shift in self-identity was reflected in seeing illness as a part of self, having a self grounded in reality and actively reengaging in life. Different emphasises in the cases reflected different developmental perspectives and age of onset of illness. Conclusions. Attention to the impact of chronic illness such as bipolar on self and identity is important to help people make sense of and integrate their experiences of the illness, facilitate increased acceptance and enabling a shift in self-identity that incorporates the illness as outlined in the facilitating shift in identity framework. Relevance to clinical practice. Managing the shift in identity is an important component of successful self-management of chronic illness. Finding ways to help facilitate a positive shift in identity that incorporates the illness is necessary. The facilitating shift in identity framework may be useful in clinical practice to guide this process.

Support for self-management of cardiovascular disease by people with learning disabilities

Cardiovascular disease (CVD) is the second most common cause of death among people with learning disabilities (LD), and lifestyle has been linked to risk factors. With a shift towards illness prevention and self-management support, it is important to know how people with LD can be involved in this process. To elicit the perceptions of people with LD, carers and health professionals regarding supported self-management of CVD. A qualitative approach used in-depth semi-structured interviews based on vignettes with accompanying pictures. Fourteen people with LD, 11 carers/care staff and 11 health professionals were recruited and interviewed. Thematic framework analysis was used to analyse interview data. In total, 11 men and 25 women were interviewed. All respondents contributed views of self-management with a wide range of opinions expressed within each participant group. Four key themes encompassed: strategies for self-management; understanding the prerequisites for self-management support; preferred supporters and challenges for self-management implementation. Facilitated service user involvement in self-management decision making was highly valued in all groups. Service users wished for co-ordinated incremental support from across agencies and individuals. People with LD can be effectively consulted regarding health management and their views can inform service development. Promoting joined-up support across health and social care and families will require investment in resources, education and dismantling of professional barriers.