Interventions and working relationships of voluntary organisations for diabetes self-management: A cross-national study.

BACKGROUND: Diabetes has become a challenging health priority globally. Given the tensions of financially burdened health systems in Europe the mobilisation of community resources like voluntary organisations and community groups is seen as a health policy strategy to sustain the management of long-term conditions like diabetes. However, little is known about how this is happening in practice in Europe. OBJECTIVES: To explore diabetes self-management interventions undertaken or promoted by voluntary organisations and community groups in Europe; and describe the types of working relationships between these organisations, European health systems and users when implementing diabetes self-management programmes in different areas. DESIGN: A mixed method study (survey/qualitative interviews) was undertaken. This research formed part of a European project (7th Framework programme of the European Commission) exploring the link between resources, like community organisations, and peoples' capacities to manage long-term conditions. SETTINGS: Six European countries (Bulgaria, Greece, Norway, Spain, the Netherlands and the United Kingdom) participated in the study. Three areas: deprived urban area, a relatively affluent urban area and a deprived rural area were purposefully selected. PARTICIPANTS: Through a purposeful sample and bottom up strategies 749 representatives of voluntary organisations and community groups were recruited from the geographical areas above. Organisations with at least three members, existing for at least one year that could provide information or other type of support directly or indirectly relevant to patients with diabetes were included. METHODS: Participants completed a 15 item questionnaire for the survey (n=749) and a voice recorded semi structured interview (n=300). Data collection focused on the type of activities and roles developed to promote health, and relationships and communication channels between organisations, health services and users. Descriptive and comparative statistical and qualitative content analyses were used. RESULTS: Participants perceived they had better reach of people with health needs than health providers, filled the administration gaps left in their capacity to deal with basic diabetes practical needs, humanized care, and acted as mediators between services and communities. There were significant differences between countries in relation to the types of activities (p-value<0.001), roles (p-value<0.001) and funding sources (p-value<0.001) of organisations concerning diabetes self-management. In non-affluent countries organisations tend to promote social activities twice more often. CONCLUSIONS: Community and voluntary organisations provide complimentary and on-going support in diabetes management. This involves a shift from focusing on the illness to also longing for social cohesion, sense of community and wellbeing in diabetes health practices and policies.

Stakeholders in support systems for self-care for chronic illness: the gap between expectations and reality regarding their identity, roles and relationships.

BACKGROUND AND OBJECTIVE: The spread of self-care holds the promise of containing chronic illness burden. Falling within the framework of a FP7 collaborative research project, this paper reports the views of key informants from six countries regarding who the main stakeholders are at different levels in the support system for self-care for patients with chronic illness (SSSC) and how they accomplish their role and collaborate. METHODS: 90 Interviews with purposefully selected key informants from Bulgaria, Greece, the Netherlands, Norway, Spain and United Kingdom were conducted. Interviews involved government and local authorities, politicians, academics, health professionals and private sector representatives. Interviewers followed an expert opinion-based guide. Analysis involved a cross-country examination with thematic analysis and framework method techniques. RESULTS: Key informants described the ideal SSSC as inclusive, interdependent and patient-centred. The following main stakeholders in SSSC were identified: patients, governments, health-care professionals, associations, private companies and the media. In the current SSSCs, collaboration among stakeholders within and across different levels was said to be lacking. Patients were seen as playing a passive subordinate role based on the following: their own attitudes; the paternalistic and medicalized attitudes of the health-care professionals; their misrepresentation by patient associations; and their exposure to the damaging influences of media and industries. CONCLUSIONS: Making SSSC patient-centred constitutes the greatest challenge for European authorities. Strategies must be revised for promoting patient participation. They should undergo changes so as to promote industry and media social responsibility and patient association advocacy capacity.

Negotiating Diet in Networks: A Cross-European Study of the Experiences of Managing Type 2 Diabetes.

Food and diet are central aspects of diabetes self-management but the relevance of social networks for the way people are supported in their management of type 2 diabetes is often under-acknowledged. In this article, we aimed to explore the coalescences between these two phenomena among people with type 2 diabetes to increase knowledge of interactions within social network related to daily diet. The article is based on 125 qualitative interviews with individuals with type 2 diabetes from five European countries. Based on assumptions that people with chronic illnesses reshape relationships through negotiation, we analyzed negotiations of food at different levels of network. The respondents' reflections indicate that there are complex negotiations that influence self-management and food, including support, knowledge, and relationships within families; attention and openness in social situations; and the premises and norms of society.

Voluntary Organizations and Community Groups as New Partners in Diabetes Self-management and Education: A Critical Interpretative Synthesis.

PURPOSE: The purpose of this study is to critically review the literature on the role and work of voluntary organizations and community groups and volunteers in diabetes self-management programs. It seeks to explain how these organizations are located and could be integrated further within a broader system of support. METHODS: A critical interpretative synthesis of the literature was undertaken as part of the conceptual development of a European research project. Evidence (2000-November 2014) was searched in databases, with the use of key terms, and limited to the languages of the participating countries. This was supplemented by an additional hand search and snowballing technique. A total of 21 articles were included in the review. RESULTS: Evidence regarding the involvement of voluntary organizations in diabetes self-management programs mainly related to: the nature and remit of their work, responsibilities, and attributes; key strategies of programs accounting for success; motivations/barriers for engaging in volunteering participation; relationships between volunteers and users; and connections/tensions with formal services. CONCLUSIONS: This review has uncovered a range of facets of voluntary organizations and community groups relevant for supporting diabetes self-management such as the context within which they act and the nature of relationships developed with community and health services. The principles of "assistance, support, sharing, and link" seem essential for this voluntary initiative in self-management to establish effective reciprocal collaboration with health professionals.