Ingrid Ruud Knutsen

Diabetes self-management arrangements in Europe: a realist review to facilitate a project implemented in six countries

BackgroundSelf-management of long term conditions can promote quality of life whilst delivering benefits to the financing of health care systems. However, rarely are the meso-level influences, likely to be of direct relevance to these desired outcomes, systematically explored. No specific international guidelines exist suggesting the features of the most appropriate structure and organisation of health care systems within which to situate self-management approaches and practices. This review aimed to identify the quantitative literature with regard to diabetes self-management arrangements currently in place within the health care systems of six countries (The United Kingdom, The Netherlands, Norway, Spain, Bulgaria, and Greece) and explore how these are integrated into the broader health care and welfare systems in each country.MethodsThe methodology for a realist review was followed. Publications of interest dating from 2000 to 2013 were identified through appropriate MeSH terms by a systematic search in six bibliographic databases. A search diary was maintained and the studies were assessed for their quality and risk of bias.ResultsFollowing the multi-step search strategy, 56 studies were included in the final review (the majority from the UK) reporting design methods and findings on 21 interventions and programmes for diabetes and chronic disease self-management. Most (11/21, 52%) of the interventions were designed to fit within the context of primary care. The majority (11/21, 52%) highlighted behavioural change as an important goal. Finally, some (5/21, 24%) referred explicitly to Internet-based tools.ConclusionsThis review is based on results which are derived from a total of at least 5,500 individuals residing in the six participating countries. It indicates a policy shift towards patient-centred self-management of diabetes in a primary care context. The professional role of diabetes specialist nurses, the need for multidisciplinary approaches and a focus on patient education emerge as fundamental principles in the design of relevant programmes. Socio-economic circumstances are relevant to the capacity to self-manage and suggest that any gains and progress will be hard to maintain during economic austerity. This realist review should be interpreted within the wider context of a whole systems approach regarding self-care support and chronic illness management.

Social Support and Health in Diabetes Patients: An Observational Study in Six European Countries in an Era of Austerity

Introduction Support from individual social networks, community organizations and neighborhoods is associated with better self-management and health outcomes. This international study examined the relative impact of different types of support on health and health-related behaviors in patients with type 2 diabetes. Methods Observational study (using interviews and questionnaires) in a sample of 1,692 type 2 diabetes patients with 5,433 connections from Bulgaria, Greece, Netherlands, Norway, Spain, and the United Kingdom. Outcomes were patient-reported health status (SF-12), physical exercise (RAPA), diet and smoking (SDCSCA). Random coefficient regression models were used to examine linkages with individual networks, community organizations, and neighborhood type (deprived rural, deprived urban, or affluent urban). Results Patients had a median of 3 support connections and 34.6% participated in community organizations. Controlled for patients’ age, sex, education, income and comorbidities, large emotional support networks were associated with decrease of non-smoking (OR = 0.87). Large practical support networks were associated with worse physical and mental health (B = -0.46 and -0.27 respectively) and less physical activity (OR = 0.90). Participation in community organizations was associated with better physical and mental health (B = 1.39 and 1.22, respectively) and, in patients with low income, with more physical activity (OR = 1.53). Discussion Participation in community organizations was most consistently related to better health status. Many diabetes patients have individual support networks, but this study did not provide evidence to increase their size as a public health strategy. The consistent association between participation in community organizations and health status provides a clear target for interventions and policies.

Empowerment and Bariatric Surgery Negotiations of Credibility and Control

Today obesity is understood as a chronic illness. Programs developed to deal with obesity often build on an explicit aim to “empower” patients to take increased responsibility for their health, in line with contemporary neoliberal discourses. There is little empirically based knowledge about this so-called empowering process. In this article we focus on how an empowering program for patients diagnosed as morbidly obese worked on individuals’ identity. The program encompassed a course in lifestyle change, bariatric surgery, and aftercare. We conducted qualitative interviews with 9 individuals at different stages of their treatment process and applied discourse analysis to interpret their constructions and negotiations as they progressed through the program. We found that dimensions of control and credibility framed the respondents’ identity work. Based on the findings we suggest that contemporary discourses of empowerment as practice might leave the participants “trapped” within the ambivalence of freedom and control.

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.

Caught between conduct and free choice--a field study of an empowering programme in lifestyle change for obese patients.

The aim of this study was to investigate understandings and strategies of empowerment in Learning and Mastery Centres, in a course in lifestyle change for morbidly obese patients. A field study was conducted with nonparticipant observation, and data analysis was inspired by foucauldian discourse analysis. The analysis revealed powerful discourses underlying the course, and the analysis showed how different discourses were set at play within the teaching strategies in the course. The course leaders balanced powerful aspects that involved directing the participants towards strategies promoting their autonomy. The analysis revealed how strategies to reduce the impression of direction and conduct are powerful actions. From a foucauldian perspective of power, this analysis demonstrates how power is everywhere as a productive force. When creating programmes to empower patients to help them deal with their health, it seems vital that health professionals examine power. By accepting the presence of power, professionals can examine the truth motivation underlying an empowerment programme.

Social support systems as determinants of self-management and quality of life of people with diabetes across Europe: study protocol for an observational study

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.

Dynamics and nature of support in the personal networks of people with type 2 diabetes living in Europe: qualitative analysis of network properties

Living with and self‐managing a long‐term condition implicates a diversity of networked relationships. This qualitative study examines the personal communities of support of people with type 2 diabetes.

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.

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

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.

Moving between ideologies in self-management support-A qualitative study

Reforms in current health policy explicitly endorse health promotion through group‐based self‐management support for people with long‐term conditions. Health promotion and traditional medicine are based on different logics. Accordingly, health professionals in health‐promoting settings demand the adoption of new practices and ways of thinking.