Lived experience perspectives on reducing the duration of untreated psychosis: the impact of stigma on accessing treatment

ABSTRACT

Introduction: Prolonged duration of untreated psychosis (DUP) has long-term deleterious effects on outcomes. Research has focused on identifying factors contributing to prolonged DUP and initiatives to reduce the time it takes individuals to access treatment. Stigma may contribute to extended DUP, but there has been little exploration of the experience of stigma and its impact on accessing care.

Objectives: The aim of this study was to explore the impact of stigma on decisions to seek care from the perspective of individuals with lived experience of psychosis and their caregivers.

Methods: A survey, developed by a group consisting of individuals with lived experience of psychosis, and distributed online, was designed to elicit quantitative and qualitative data relating to the experience of accessing care at the onset of psychosis. Qualitative data were analysed using Thematic Analysis.

Results: 193 respondents completed the survey. Qualitative analysis yielded themes including “perception of stigma” and “outcomes associated with stigma”.

Conclusions: There is a need to address stigma at the outset of treatment, and wider dissemination of information about psychosis is necessary. Future research should address cultural differences in individuals’ experiences of psychosis, as well as the role siblings play in the care of affected individuals.

KEYWORDS:

• Early intervention in psychosis
• duration of untreated psychosis
• stigma
• lived experience

Disclosure statement

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.