Self-management of type 2 diabetes : processes for setting up a diabetes and pre-diabetes support intervention in socioeconomically disadvantaged communities in Sweden

Abstract: Background: Type 2 diabetes and pre-diabetes are major public health challenges, disproportionately affecting disadvantaged populations worldwide. The high burden of Type 2 diabetes (T2D) contributes significantly to disability, reduced quality of life, and increased use of health care services, impacting heavily on both individuals and health systems. Potentially effective interventions for the prevention and management of T2D exist and self-management is a core strategy. However, there is limited knowledge on the processes and actors required for the provision of adequate self-management support to compliment routine primary care, especially for disadvantaged populations. Aim: The overall aim is to understand the self-management support processes for type 2 diabetes and pre-diabetes in socioeconomically disadvantaged communities in Stockholm, Sweden. Specific research questions in turn focus on perceptions about self-management and pre-diabetes, the role of the community in the provision of self-management support and the opportunities for improving community involvement. Methods: The thesis comprises of four sub-studies, with studies I to III focusing on the individuals, the community and primary care in Sweden. A range of qualitative data collection methods were applied including: individual interviews, natural group discussions, and observations followed by thematic and content analysis. In study IV, a case-study approach was used, including synthesis and triangulation of data from Sweden, South Africa and Uganda, and informed by a self-management framework. Results: Patients and providers experienced dilemmas in their daily dealings with selfmanagement practices. Whilst patients struggled to adapt to recommended lifestyle changes, providers were ill equipped to manage the cultural diversity of their patients when attempting to empower them to self-manage through education (Study I). Pre-diabetes is not recognized as a diagnosis and persons at risk are uncertain of its significance in everyday life (Study II). Community was perceived as living in close proximity and sharing common resources. Interaction between communities and local and regional stakeholders was limited for health promotion and prevention activities including for T2D (Study III). In comparison to Uganda and South Africa, Sweden has established primary care routines for T2D management but self-management strategies are not adequately tailored to patients’ needs, particularly considering the diversity in the target population. In comparison to South Africa and Uganda, Swedish primary care has no established processes to engage communities in self-management support activities. Examples of this in South Africa and Uganda include integrated care through community health workers and other tailored peer or professional-led support initiatives. (Study IV). Conclusions: Self-management support is a complex process involving multiple actions and actors. The findings of this thesis highlighted: the mismatches in patient-provider perceptions of self-management; the barriers to recognizing pre-diabetes as the focus of a prevention strategy; the need to redefine the role of communities in the provision of selfmanagement support; and that strengthened ties between communities and primary care, as seen in other settings, has the potential to improve self-management. This further highlights the significance of a contextualized response to the demands of a changing population to ensure that no one is left behind.