JMIR Publications

ABSTRACT

Personal narratives describing lived experiences of the entire spectrum of mental health challenges are now widely available to the public, in a range of published forms. Examples include autobiographies from public figures, thematic collections of narratives assembled by mental health organisations, and individual narratives published on video sharing services such as YouTube. Mental health lived experience narratives have been used as an active ingredient of anti-stigma campaigns, which in turn have been associated with recovery-oriented outcomes such as help seeking and disclosure comfort. They have been used by activists and organisations with the intention of creating beneficial political, societal, community, service level and individual change. In the narrative inquiry research approach, they are used to explore mental health phenomenology. Mental health lived experience narratives frequently contain sensitive personal information about the narrator and third parties, such as periods of detention due to a mental capacity assessment. There are ethical and legal challenges around the use of mental health lived experience narratives in research and practice which are worthy of exploration. For some ethical and legal decision-making, there are no settled best practices, and a continuing debate about what good decision-making might amount to. For example, some collections have chosen to require the redaction of personal identity from narratives, whilst others have allowed a narrator the right to be identifiable in their own narrative. These choices reflect trade-offs between underlying ethical concerns, such as respecting narrator autonomy, and avoiding potential harm due to disclosure, the latter given ongoing mental health stigma. Mental health lived experience narratives are used as data or intervention across a broad range of research disciplines. Reflecting on research practices is valuable, because researchers are trained in ethical and legal conduct. The best knowledge on ethical and legal decision-making around mental health lived experience narratives may come from integrating knowledge across disciplines, due to disparate thought and reasoning deployed in different research settings. As a preliminary exploration of inter-disciplinary issues around research usage of mental health lived experience narratives, we present reflections on four case studies of narrative practice. These consider the use of narratives 1) to document the impact of a public health intervention, 2) to create benefit in a digital health intervention; 3) as a condensation of the critical elements of a longer interview; 4) in interactions between users of an online peer support service. We identify cross-cutting challenges around consent processes, narrative analysis and interpretation, and dissemination of data and findings. These challenges have transdisciplinary and disciplinary specific features, and can be used as a preliminary checklist in research design processes. We conclude by contemplating interdisciplinary explorations with the potential to expand knowledge, including examining the use of pathographic narratives in philosophical inquiry.