Understanding the experiences of stigma in relation to social support among an Australian community cohort of people living with epilepsy

The deleterious impact of stigma on the well‐being and quality of life of people living with epilepsy (PWE) is well known but given the social nature of stigma, it is important to understand what stigma means to PWE in different social contexts. To date, there are few qualitative studies on the experience of stigma for PWE in Australia and few studies examining social support as a possible mitigating factor. The current study set out to examine (i) PWE's own understanding of stigma, and (ii) whether social support could mitigate experiences of stigma. Stigma was conceptualised according to Scambler's idea of perceived stigma, or threat of discrimination, and internalised stigma. Three‐hundred and forty‐three surveys were received as part of the Australian Epilepsy Longitudinal Survey (AELS). The survey collected quantitative data on stigma and social support. Qualitative data was collected through free‐text responses to the question, “What does stigma mean to you?” Qualitative responses pointed to misunderstanding as a key aspect of stigma. Social support had a greater role in reducing internalised stigma as opposed to perceived stigma. The current study is one of the first to examine an Australian cohort of PWE's understanding of stigma and its relationship to social support.