Abstract
BackgroundLong-term conditions pose major challenges for healthcare systems. Optimizing self-management of people with long-term conditions is an important strategy to improve quality of life, health outcomes, patient experiences in healthcare, and the sustainability of healthcare systems. Much research on self-management focuses on individual competencies, while the social systems of support that facilitate self-management are underexplored. The presented study aims to explore the role of social systems of support for self-management and quality of life, focusing on the social networks of people with diabetes and community organisations that serve them.MethodsThe protocol concerns a cross-sectional study in 18 geographic areas in six European countries, involving a total of 1800 individuals with diabetes and 900 representatives of community organisations. In each country, we include a deprived rural area, a deprived urban area, and an affluent urban area. Individuals are recruited through healthcare practices in the targeted areas. A patient questionnaire comprises measures for quality of life, self-management behaviours, social network and social support, as well as individual characteristics. A community organisations’ survey maps out interconnections between community and voluntary organisations that support patients with chronic illness and documents the scope of work of the different types of organisations. We first explore the structure of social networks of individuals and of community organisations. Then linkages between these social networks, self-management and quality of life will be examined, taking deprivation and other factors into account.DiscussionThis study will provide insight into determinants of self-management and quality of life in individuals with diabetes, focusing on the role of social networks and community organisations.
Highlights
Long-term conditions, such as diabetes and cardiovascular disease, pose major challenges for healthcare systems in economically developing and developed countries [1]
The second phase of the analysis addresses research question 3 and comprises an exploration of linkages between system-related factors on the one hand, and self-management, health-related lifestyles and quality of life on the other hand, taking deprivation and other factors into account (Figure 1)
Self management is seen as one possible way reduce costs, forcing the patient to take the lead in his/her health and shifting social support towards family and community organisations
Summary
Study design An observational study in two related parts is planned: a cross-sectional observational study in individuals with diabetes (recruited through healthcare practices) and a survey of representatives of community organisations. Statistical accuracy The planned study will include diabetes patients (n = 1800), primary care practices (n = 36 to n = 96), support organisations (n = 300 to 900), geographical areas (n = 18) and countries (n = 6). The questionnaire is purposefully developed and covers the following domains: descriptive information on the organisation and its activities; reach in target group in terms of users of information, participants in activities; collaboration with other support organisations in the local area, including primary care healthcare practices; contact/collaboration with other organisations in domains that are relevant to self-management behaviours. The second phase of the analysis addresses research question 3 and comprises an exploration of linkages between system-related factors (in social networks and community organisations) on the one hand, and self-management, health-related lifestyles and quality of life on the other hand, taking deprivation and other factors into account (Figure 1). Testing differences between countries is not planned as the sampling method does not allow inference to countries, but we will take country differences into account when interpreting the results
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