Theory-based self-management programs for promoting recovery in community-dwelling stroke survivors : a systematic review

Background Post-stroke recovery is demanding. Increasing studies have examined the effectiveness of self-management programs for stroke survivors. However no systematic review has been conducted to summarize the effectiveness of theory-based stroke self-management programs. Objectives The aim is to present the best available research evidence about effectiveness of theory-based self-management programs on community-dwelling stroke survivors’ recovery. Inclusion criteria Types of participants All community-residing adults aged 18 years or above, and had a clinical diagnosis of stroke. Types of interventions Studies which examined effectiveness of a self-management program underpinned by a theoretical or conceptual framework for community-dwelling stroke survivors. Types of studies Randomized controlled trials. Types of outcomes Primary outcomes included health-related quality of life and self-management behaviors. Secondary outcomes included physical (activities of daily living), psychological (self-efficacy, depressive symptoms), and social outcomes (community reintegration, perceived social support). Search Strategy A three-step approach was adopted to identify all relevant published and unpublished studies in English or Chinese. Methodological quality The methodological quality of the included studies was assessed using the Joanna Briggs Institute critical appraisal checklist for experimental studies. Data Collection A standardized JBI data extraction form was used. There was no disagreement between the two reviewers on the data extraction results. Data Synthesis There were incomplete details about the number of participants and the results in two studies, which makes it impossible to perform meta-analysis. A narrative summary of the effectiveness of stroke self-management programs is presented. Results Three studies were included. The key issues of concern in methodological quality included insufficient information about random assignment, allocation concealment, reliability and validity of the measuring instruments, absence of intention-to-treat analysis, and small sample sizes. The three programs were designed based on the Stanford Chronic Disease Self-management program and were underpinned by the principles of self-efficacy. One study showed improvement in the intervention group in family and social roles three months after program completion, and work productivity at six months as measured by the Stroke Specific Quality of Life Scale (SSQOL). The intervention group also had an increased mean self-efficacy score in communicating with physicians six months after program completion. The mean changes from baseline in these variables were significantly different from the control group. No significant difference was found in time spent in aerobic exercise between the intervention and control groups at three and six months after program completion. Another study, using SSQOL, showed a significant interaction effect by treatment and time on family roles, fine motor tasks, self-care, and work productivity. However there was no significant interaction by treatment and time on self-efficacy. The third study showed improvement in quality of life, community participation, and depressive symptoms among the participants receiving the stroke self-management program, Stanford Chronic Disease Self-management program, or usual care six months after program completion. However, there was no significant difference between the groups. Conclusions There is inconclusive evidence about the effectiveness of theory-based stroke self-management programs on community-dwelling stroke survivors’ recovery. However the preliminary evidence suggests potential benefits in improving stroke survivors’ quality of life and self-efficacy.

Self-management programs in stage 1-4 chronic kidney disease : a literature review.

Background Chronic kidney disease (CKD) is a complex health problem, which requires individuals to invest considerable time and energy in managing their health and adhering to multifaceted treatment regimens. Objectives To review studies delivering self-management interventions to people with CKD (Stages 1–4) and assess whether these interventions improve patient outcomes. Design: Systematic review. Methods Nine electronic databases (MedLine, CINAHL, EMBASE, ProQuest Health & Medical Complete, ProQuest Nursing & Allied Health, The Cochrane Library, The Joanna Briggs Institute EBP Database, Web of Science and PsycINFO) were searched using relevant terms for papers published between January 2003 and February 2013. Results The search strategy identified 2,051 papers, of which 34 were retrieved in full with only 5 studies involving 274 patients meeting the inclusion criteria. Three studies were randomised controlled trials, a variety of methods were used to measure outcomes, and four studies included a nurse on the self-management intervention team. There was little consistency in the delivery, intensity, duration and format of the self-management programmes. There is some evidence that knowledge- and health-related quality of life improved. Generally, small effects were observed for levels of adherence and progression of CKD according to physiologic measures. Conclusion The effectiveness of self-management programmes in CKD (Stages 1–4) cannot be conclusively ascertained, and further research is required. It is desirable that individuals with CKD are supported to effectively self-manage day-to-day aspects of their health.

When the whole 'bloke' thing starts to crumble : men's access to chronic illness (arthritis) self management programs

This thesis explores the issue of men's access to chronic illness self management programs from a social constructionist perspective. A combination of research methodologies was used; a quantitative analysis to confirm gender differences in levels and patterns of service use; a qualitative analysis to gain an increased understanding of the factors affecting men's access; and a trial to test the application of the research findings. The clients and services of Arthritis Victoria were chosen as the setting for this research. The quantitative analyses were conducted on contingency tables and odds ratios and confirmed that men were under-represented as service users. The analyses also identified gender differences in patterns of service use. The qualitative analysis was based on a series of in-depth, semi-structured interviews. It was undertaken from a grounded theory approach to allow for the development of theoretical explanations grounded in the data. It was found that men's decisions to access chronic illness self management programs were strongly influenced by dominant social constructions of masculinity which constrained help-seeking and health management behaviour. However, the restrictive influence of hegemonic masculinity was progressively undermined by the increasing severity of the chronic condition until a crisis point was reached in terms of the severity of the condition or its impact on lifestyle. This resulted in a reformulation or rejection of hegemonic masculinity. The described conceptual framework was consistent for men from diverse social groupings, although it appeared less prominent in both younger and older men, suggesting that dominant social constructions of masculinity have the greatest influence on health decisions during the middle stage of adulthood when work and family obligations are greatest. The thesis findings informed the development of some guiding principles for reviewing the structure and delivery of chronic illness self management services for men. The guiding principles will have direct application in the planning of Arthritis Victoria programs, and implications for other chronic illness self management programs in Australia, and also in Western countries with a similar health and sociocultural setting to Australia.

Chronic disease self-management programs : perspectives on enablers and barriers to GP and patient engagement

Aims & rationale/Objectives : Chronic disease self-management programs (CDSMP) are increasingly being integrated into the health system to improve the care of people with chronic conditions. Despite activity at both policy and program levels, GPs as the 'gatekeepers' to the health system have generally not been well informed or engaged in this process. This study, in collaboration with 3 Victorian Divisions of General Practice, sought both GP and patient perspectives on enablers and barriers to engagement in self-management programs.
Methods : Interviews were conducted with GPs (n=20) and consumers (n=45) purposefully recruited from metropolitan and rural Victoria, representing key demographics of interest including low socioeconomic areas.
Principal findings : Lack of education/information and uncertainty about the effectiveness of self-management programs were key barriers for both GP and patient engagement. Programs that were sustainable and utilised existing community resources were viewed as enablers to increase uptake. GP and patient preferences for disease specific or generic CDSMP differed.
Discussion : Outcomes from the recent Council of Australian Governments' meeting suggest that self-management will be a centerpiece in forthcoming chronic disease initiatives. International evidence has highlighted the need for GP and patient engagement as critical in ensuring the recruitment of a critical mass of individuals to participate in CDSMP to ensure the sustainability of such initiatives. Insight from this study indicates that GPs and patients are not well informed about self-management, have different preferences to current policy trends and identifies several other barriers which need to be addressed if CDSMP are to be successful.
Implications : Identification of barriers and enablers of GP and patient engagement in self-management is essential in shaping current policy initiatives and delivery of future programs. This is supported by international evidence which indicates strongly that GP engagement in particular is crucial to the success of these programs.
Presentation type : Paper

To integrate or not to integrate? Future considerations for chronic disease self-management programs in the health care system

Objective: The growing burden of chronic disease and the increasing realisation that the current health system is ill equipped to deal with this trend has resulted in a health policy shift away from the traditional medical model to a more patient centred approach. As such, chronic disease self-management programs (CDSMP) have emerged as a potentially important component within this approach. Policy and program trends at the international level highlight several critical factors that need to be considered by governments and health care providers alike if CDSMP are to be integrated within the broader health system. This study reviewed international and local policy literature and sought perspectives from key stakeholders to determine the value and potential for integrating a generic group-based CDSMP into the care continuum.
Method: Prominent self-management policies were identified through a comprehensive literature search. Interviews were conducted with policy makers across Australia (n=20), health practitioners (n=20) and consumers (n=42) purposefully recruited from metropolitan and rural Victoria, representing key demographics of interest including low socioeconomic areas.
Results: Whilst CDSMP were viewed as having significant potential to be integrated into the health sector it was identified that the delivery and content of CDSMP needs to be flexible in order to address the needs of people across the disease, age and care continuums. Critical issues to be addressed if CDSMP are to be successfully integrated include increasing the profile of self-management; actively engaging and training health practitioners in self-management and overcoming system barriers such as lack of integrated referral pathways and networks.
Discussion: Policy directions at the national level suggest that self-management will be a centrepiece in forthcoming chronic disease initiatives. International evidence has highlighted the requirement for a ‘suite’ of programs to adequately cater to different stages of the disease continuum, age groups, ethnic backgrounds and sociogeographical areas. Furthermore engagement with key stakeholders (particularly GPs) is identified as critical to ensure the successful integration of CDSMP into the health system.
Conclusion: Evidence suggests that CDSMP is an important facet in improving care of people with chronic conditions. Findings from this study suggest that current infrastructure and policy direction, which have been found to be critical factors in facilitating integration of CDSMP into the health sector, are either absent or inadequate in Victoria. CDSMPs are currently lacking a sustainable workforce, referral infrastructure and specific policy. Such factors need to be addressed before the integration of CDSMP can be considered across the healthcare continuum in Victoria.

Acceptability, impact and sustainability of the national pilot quality assurance system for self management programs

Chronic condition self-management education and training interventions such as the Stanford Self Management Programs (SMP) have the capacity to improve health and quality of life of people with chronic conditions whilst reducing the use of health services. This is in line with the outcomes from the recent Council of Australian Governments’ meeting where it was indicated that self-management will be a centrepiece in forthcoming chronic disease initiatives.
Aim: report on a large national pilot quality assurance program involving the implementation and of an evaluation and quality monitoring system for SMPs including the provision of structured feedback to courses course leaders and service providers. During 2005/06 the quality assurance program was implemented at 11 diverse organisations across Australia. The program involved assisting organisations apply the 42-item Health Education Impact Questionnaire (HEIQ), a chronic disease health education outcome measure, and then observe and evaluate the value and impact of the quality program. Interviews with course leaders (n=60) and course participants (n=35) have elicited views about course quality and feedback processes.
Results: The evaluation revealed enablers and barriers to effective implementation and sustainability. Important enablers were:
- Course Leaders and organisations valued an Australia-wide system that provided feedback on course
quality and the impact on participants.
- Course Leaders were strongly personally motivated to respond appropriately to HEI-Q course
report feedback.
- Completing the questionnaire provided participants with the opportunity to reflect on issues that
emerge in the course content and reflect on their progression at the end of the SSMP.
Sustainability issues included:
- Organisations and course leaders require support, training and flexibility on how to administer and
manage the use of the HEI-Q.
- Availability of administrative resources in organisations to support the quality assurance activities.
- The requirement that course leaders are trained in interpreting HEI-Q course report data.
A quality improvement framework was developed which identified the actions required of key stakeholders to
support effective implementation.
Discussion: With the increasing endorsement of SMP across sectors it is important that course quality is known, is acceptable, and is communicated to stakeholders to inform and engender confidence in the SSMP. To effectively implement and sustain a quality improvement program for SMP, the processes and tools for measuring outcomes need to be responsive, flexible and easily integrated into the organisation and delivery of programs.

Who benefits most from participating in chronic disease self-management programs?

Objectives: To quantify the benefits that people receive from participating in self-management courses and identify subgroups that benefit most.
Research Design: People with a wide range of chronic conditions attending self-management courses (N=1,341 individuals) were administered the generic Health Education Impact Questionnaire (HEI-Q). Data were collected before the first session (baseline) and at the end of courses (follow-up) resulting in 842 complete responses. The median (interquartile range) age was 64 (54 to 73) years and most participants were female (75%). Outcomes were categorized as Substantial improvement (Effect Size, ES ≥ 0.5), Minimal/No change (ES -0.49 to 0.49) and Substantial decline (ES ≤ -0.5).
Results: On average, one third of participants reported substantial benefits after attending a self-management course. Proportions of participants reporting substantial benefits ranged from 49% in Skill and technique acquisition to 27% in Health service navigation. Stratification by gender, age and education showed that younger participants were more likely to benefit, particularly young women. No further subgroup differences were observed.
Conclusions: Given that the health of people with chronic diseases tends to decline, this evaluation is reassuring in that about one third of participants coming from a wide range of backgrounds receive substantial improvements in their self-management skills.