‘They use the little information they have to pass judgement’: A framework analysis of type 1 diabetes stigma experienced by UK adults living with type 1 diabetes

Abstract

Aims: Type 1 diabetes stigma (T1D-stigma), the negative social judgements towards people living with type 1 diabetes (T1D), is linked to poor psychological well-being and suboptimal diabetes self-management. This qualitative study explored the T1D-stigma experiences of adults living with T1D in the UK. Methods: UK-based adults (aged ≥18 years) with T1D completed an online survey as part of a wider T1D-stigma study. Respondents who endorsed at least one item on the Type 1 diabetes stigma assessment scale (DSAS-1) were then invited to provide more information about their stigma experiences. Responses were analysed using framework analysis. Results: The majority of respondents (96%) endorsed experiencing at least one instance of perceived or experienced stigma. A framework analysis of N = 337 participants' responses developed five themes and 19 sub-themes. The first and second themes explored the ‘Sources’ and ‘Drivers and facilitators’ of T1D-stigma. The third theme encapsulated the ‘Experiences’ of T1D-stigma, where participants described ‘unsolicited comments and advice’, ‘discrimination and rejection’ and ‘lack of understanding’. The fourth theme encompassed the ‘Impact’ of T1D-stigma, where participants described its social, emotional, and behavioural impact. The final theme explored Stigma management’ and described ‘dealing with T1D-stigma’, ‘changes over time in self, society and diabetes technology’ and ‘protective factors in T1D-stigma encounters’. Conclusion: This study has provided the first systematic qualitative analysis of T1D-stigma in the UK. In line with other diabetes-related stigma research, T1D-stigma was broad in its manifestations and impact. Participants volunteered information about T1D-stigma management, despite not being explicitly asked about this, highlighting approaches that could inform future interventions.