From stigma to increased social acceptance? Living with Machado-Joseph disease in São Miguel, Azores, Portugal

Abstract

This study describes the experiences with stigma attached to Machado-Joseph disease (MJD) in São Miguel Island, the Azores (Portugal). We draw on semi-structured interviews with persons with MJD, family members, healthcare professionals and direct care providers, recruited through the local patient’s association (n = 28). Qualitative thematic analysis revealed three main themes: i) intense stigma in the past; ii) current tendency towards increased openness; and ii) increased availability of information about MJD and support. The findings suggest that stigmatization was more frequent and intense in the past, but there is currently a decrease in the intensity of perceived stigma accompanied by an increasing awareness about MJD within the community. The local patient’s association is described as playing a key role in raising awareness about MJD in the community, as well as fostering increased confidence among people with MJD and their families to engage socially, which may help decrease or mitigate feelings of stigma. This raises questions into whether the diminished stigma towards MJD in São Miguel stems from heightened awareness about the condition, a decrease in the socially acceptability of stigma, or a gradual internalization and normalization of stigma among individuals with MJD as a coping mechanism.