Chronic disease self-management in Aboriginal communities : towards a sustainable program of care in rural communities

The Chronic Disease Self-Management (CDSM) strategy for Aboriginal patients on Eyre Peninsula, South Australia, was designed to develop and trial new program tools and processes for goal setting, behaviour change and self-management for Aboriginal people with diabetes. The project was established as a one-year demonstration project to test and trial a range of CDSM processes and procedures within Aboriginal communities and not as a formal research project. Over a one-year period, 60 Aboriginal people with type-2 diabetes in two remote regional centres participated in the pilot program. This represents around 25% of the known Aboriginal diabetic population in these sites. The project included training for four Aboriginal Health Workers in goal setting and self-management strategies in preparation for them to run the program. Patients completed a Diabetes Assessment Tool, a Quality of Life Questionnaire (SF12), the Work and Social Adjustment Scale (WASAS) at 0, 6 and 12 months. The evaluation tools were assessed and revised by consumers and health professionals during the trial to determine the most functional and acceptable processes for Aboriginal patients. Some limited biomedical data were also recorded although this was not the principal purpose of the project. Initial results from the COAG coordinated care trial in Eyre suggest that goal setting and monitoring processes, when modified to be culturally inclusive of Aboriginal people, can be effective strategies for improving self-management skills and health-related behaviours of patients with chronic illness. The CDSM pilot study in Aboriginal communities has led to further refinement of the tools and processes used in chronic illness self-management programs for Aboriginal people and to greater acceptance of these processes in the communities involved. Participation in a diabetes self-management program run by Aboriginal Health Workers assists patients to identify and understand their health problems and develop condition management goals and patient-centred solutions that can lead to improved health and wellbeing for participants. While the development of self-management tools and strategies led to some early indications of improvements in patient participation and resultant health outcomes, the pilot program and the refinement of new assessment tools used to assist this process has been the significant outcome of the project. The CDSM process described here is a valuable strategy for educating and supporting people with chronic conditions and in gaining their participation in programs designed to improve the way they manage their illness. Such work, and the subsequent health outcome research planned for rural regions, will contribute to the development of more comprehensive CDSM programs for Aboriginal communities generally.

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.

Seeking the views of health professionals on translating chronic disease self-management models into practice

Abstract
Few studies have investigated the views of health professionals with respect to their use of chronic disease self-management (CDSM) in the workplace.
Objective
This qualitative study, conducted in an Australian health care setting, examined health professional's formal self-management (SM) training and their views and experiences on the use of SM techniques when working with people living with a chronic illness.
Methods
Purposive sample of 31 health care professionals from a range of service types participated in semi-structured interviews.
Results
The majority of participants (65%) had received no formal training in SM techniques. Participants reported a preference for an eclectic approach to SM, relying primarily on five elements: collaborative care, self-responsibility, client's individual situation, structured support and linking with community agencies. Problems with CDSM centred on medication management, complex measuring devices and limited efficacy with some patient groups.
Conclusion
This study provides valuable information with respect to the use of CDSM within the workplace from the unique perspective of a range of healthcare providers within an Australian health care setting.
Practice implications
Training implications, with respect to CDSM and patient care, are discussed, together with how these findings contribute to the debate concerning how SM principles are translated into healthcare settings.

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

Background: Supporting self management is seen as an important health service strategy in dealing with the large and increasing health burden of chronic conditions. Several types of self-management programs are available. Evidence to date suggests that disease specific and lay-led self management programs provide only part of the support needed for improved outcomes. The Flinders Program is promising as a generic self management intervention, which can be combined with targeted disease specific and lay-led interventions, but it has yet to be evaluated for a range of chronic conditions using a rigorous controlled trial design. This paper gives the rationale for a randomised controlled trial and process evaluation of the Flinders Program of chronic condition self-management in community practice, and details and justifies the design of such a study.Method: The design for a randomised trial and associated process evaluation, suited to evaluation of a complex and behavioural intervention as it is applied in actual practice, is presented and justified.Conclusion: A randomised trial of the Flinders Program is required and a functional design is presented. Results from this trial, currently underway, will test the effectiveness of the Flinders Program in improving patient competencies in self-management of chronic conditions in practice conditions. A process evaluation alongside the trial will explore system, provider and patient factors associated with greater and lesser Program effectiveness.

Next steps in the logic of consumer-led self-management : translating chronic condition self-management programmes (CCSM) into lifestyle management programmes for young people

The techniques applied in chronic condition self-management programmes (CCSM) to support patients with chronic conditions are basic counselling and communication strategies that would benefit people at all stages of life and wellness. The question being explored here is why, as a society, we wait until people develop essentially preventable chronic conditions before helping them to develop the life skills they need to manage their lives and their human interactions better rather than working to avoid or prevent many chronic conditions that develop as a result of people lacking such skills? If we were to teach coping and managing skills to everyone in a supportive and structured way, using the peer-led teaching and learning strategies and basic counselling and education processes that have been shown to be successful for other older groups with chronic illness, the overall population impact would be more significant. Therefore why wait until people have chronic conditions before empowering them with basic life management techniques? Do people need to be sick before they can be motivated to live more effective lives? Is sickness the main stimulus for triggering health-related behaviour change or can other factors in people’s lives serve to inform and motivate lifestyle change?

Sisyphus and self-management : the chronic condition self-management paradox

Chronic condition self-management is promoted internationally as not only a possible solution to the health problems of our increasingly chronically ill and ageing population, but as part of a new wave of consumer-led and volunteer-managed health care initiatives. Consumers are now indicating that they want to be more involved in the management of their lives and their health care options, while, especially in rural and smaller communities in Australia, a shortage of clinicians means that health care is rapidly changing. This emphasis on self-management raises crucial questions about where consumer action and control in health care should end and where clinical and medical intervention might begin. Hence, as in the case of Sisyphus and his rock, the self-management process is a difficult and demanding one that poses major challenges and loads for health system reformers and represents a struggle in which new difficulties are constantly emerging. This paper examines some implications of new self-management approaches to chronic illness from an ideological perspective and highlights key elements that underpin the effort to promote health-related lifestyle change. While peer-led self-management programs may assist certain individuals to live engaged and meaningful lives, the essential social and economic determinants of health and wellbeing mean that these programs are not the answer to our urgent need for major reform in the health care arena. Rather, self-management, from an ideological perspective, represents a minor adjustment to the fabric of our health system.

Translating chronic condition self-management programmes (CCSM) into lifestyle management programmes for young people

The techniques applied in chronic condition self-management programmes (CCSM) to support patients with chronic conditions are basic counselling and communication strategies that would benefit people at all stages of life and wellness. The question being explored here is why, as a society, we wait until people develop essentially preventable chronic conditions before helping them to develop the life skills they need to manage their lives and their human interactions better rather than working to avoid or prevent many chronic conditions that develop as a result of people lacking such skills? If we were to teach coping and managing skills to everyone in a supportive and structured way, using the peer-led teaching and learning strategies and basic counselling and education processes that have been shown to be successful for other older groups with chronic illness, the overall population impact would be more significant. Therefore why wait until people have chronic conditions before empowering them with basic life management techniques? Do people need to be sick before they can be motivated to live more effective lives? Is sickness the main stimulus for triggering health-related behaviour change or can other factors in people's lives serve to inform and motivate lifestyle change.

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

Purpose 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.

Methods 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.

Results 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.

Conclusion 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.

'Work it out': Evaluation of a chronic condition self-management program for urban Aboriginal and Torres Strait Islander people with or at risk of cardiovascular disease

This thesis evaluates a chronic condition self-management program for Aboriginal and Torres Strait Islander people in urban south-east Queensland who have or are at risk of cardiovascular disease. Outcomes showed short-term improvements for some anthropometry measures which could be a trend for improvement in other anthropometry indicators over the longer term. The program was of particular benefit for participants who had several social and emotional wellbeing conditions. The use of an Aboriginal and Torres Strait Islander conceptual framework was critical in undertaking culturally competent quantitative research in this project.

The extent and breadth of benefits from participating in chronic disease self-management courses: a national patient-reported outcomes survey

Objective
To quantify the benefits that people receive from participating in self-management courses and identify subgroups that benefit most.

Methods
People with a wide range of chronic conditions attending self-management courses (N = 1341 individuals) were administered the Health Education Impact Questionnaire (heiQ). Baseline and follow-up data were collected resulting in 842 complete responses. 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 at the end of a course and this ranged from 49% in the heiQ subscale Skill and technique acquisition to 27% in the heiQ subscale 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.

Conclusion
While the well-being of people with chronic diseases tends to decline, about one third of participants from a wide range of backgrounds show substantial improvements in a range of skills that enable them to self-manage.

Practice implications
These data support the application of self-management courses indicating that they are a useful adjunct to usual care for a modest proportion of attendees.

Change of perspective: a measurable and desired outcome of chronic disease self-management intervention programs that violates the premise of preintervention/postintervention assessment

Objective: To determine if participants in chronic disease self-management courses have a change of perspective of their health status (a response shift), and if this is measurable with a paper-based questionnaire.

Methods: Nine items were developed to measure potential benefits of self-management courses. These were based on the constructs of a previous questionnaire, the Health Education Impact Questionnaire (HEI-Q). Cognitive interviews elicited spontaneous statements about the reasons for paper-based answers. Sensitivity, specificity, and overall accuracy of items were calculated using the interview as a relative gold standard. Response shift can be negative (i.e., after the course, participants realize that, before the course, they were worse than they thought they were), positive (i.e., participants now realize they were better than they thought they were), or absent (no change).

Results: Interviews (n = 39) reflected that true response shift occurred in approximately half the replies to questionnaire items. Of these, 31% were negative response shift, 20% were positive response shift. Response shift was absent in 32% of replies. Presence or absence of response shift could not be determined in 17% of replies across items. Significant concordance between questionnaires and cognitive interviews (average overall accuracy 0.79) indicated that the HEI-Q Perspective questionnaire detects response shift in participants of self-management courses. The questionnaire revealed that 87% of participants had response shift in at least 1 item.

Conclusion: This study suggests that preintervention/postintervention assessments of interventions such as self-management courses are confounded by a change in perspective of a large proportion of respondents. It also indicates response shift is a valuable outcome of self-management courses that can be measured with a paper-based questionnaire.

Chronic disease self-management education programs: challenges ahead

♦ Chronic disease self-management education programs aim to empower patients through providing information and teaching skills and techniques to improve self-care and doctor–patient interaction, with the ultimate goal of improving quality of life.

♦ The recent 2006–07 federal budget allocated an unprecedented $515 million over 5 years for activation of patient self-management activities, commencing this financial year.

♦ Previous attempts in other countries to incorporate self-management education activities into the health care sector have faced setbacks because of inadequate integration into primary care.

♦ Engagement of health care professionals and their endorsement of self-management activities is critical to success.

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

♦ 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.

Getting your life back on track after stroke : a phase II multi-centered, single-blind, randomized, controlled trial of the Stroke Self-Management Program vs. the Stanford Chronic Condition Self-Management Program or standard care in stroke survivors

Background Self-management is seen as a primary mechanism to support the optimization of care for people with chronic diseases such as symptomatic vascular disease. There are no established and evidence-based stroke-specific chronic disease self-management programs. Our aim is to evaluate whether a stroke-specific program is safe and feasible as part of a Phase II randomized-controlled clinical trial.
Methods Stroke survivors are recruited from a variety of sources including: hospital stroke services, local paper advertisements, Stroke South Australia newsletter (volunteer peer support organization), Divisions of General Practice, and community service providers across Adelaide, South Australia. Subjects are invited to participate in a multi-center, single-blind, randomized, controlled trial. Eligible participants are randomized to either;
• standard care,
• standard care plus a six week generic chronic condition self-management group education program, or,
• standard care plus an eight week stroke specific self-management education group program.
Interventions are conducted after discharge from hospital. Participants are assessed at baseline, immediate post intervention and six months.
Study Outcomes The primary outcome measures determine study feasibility and safety, measuring, recruitment, participation, compliance and adverse events.
Secondary outcomes include:
• positive and active engagement in life measured by the Health Education Impact Questionnaire,
• improvements in quality of life measured by the Assessment of Quality of Life instrument,
• improvements in mood measured by the Irritability, Depression and Anxiety Scale,
• health resource utilization measured by a participant held diary and safety.

Conclusion The results of this study will determine whether a definitive Phase III efficacy trial is justified.