Ethical and Legal Considerations in the Collection and Analysis of Mental Health Lived Experience Narratives: Reflections on 4 Case Studies of Research Practice

Abstract Personal narratives describing lived experiences of the entire spectrum of mental health challenges are now widely available to the public, including through autobiographies from public figures, thematic collections of narratives assembled by mental health organizations, and individual narratives published on video sharing services. Mental health lived experience narratives have been used as an “active ingredient” in interventions intended to create change, such as in campaigns against mental health stigma. In the narrative inquiry research approach, they are used to explore mental health phenomenology. Researchers and organizations working with mental health lived experience narratives have to contend with a wide range of legal and ethical challenges, such as how to handle narratives disclosing sensitive personal information about third parties and the ethical trade-off between preserving narrator autonomy over their presentation of personal identity and protecting narrators from harm due to mental health stigma if a narrator is identifiable in their narrative. In 2022, we formed the Interdisciplinary Consortium on Narratives in Context (ICONIC) of people with knowledge of narrative practices across disciplines. Members are engaged in health research, liberal arts, modern languages, history, and philosophy. In this viewpoint, we present four case studies of narrative practices by ICONIC members: (1) a narrative inquiry into the experiences of Ethiopian citizens with schizophrenia, (2) work to curate and share 2 collections of mental health recovery narratives, (3) an exploration of the use of poetic transcription to condense narrative interviews with mental health content, and (4) the development of safe approaches to working with personal narratives shared through an online mental health peer support service. In presenting these case studies, we focused on documenting decision-making on ethical and legal challenges as the best knowledge on ethical and legal decision-making regarding mental health lived experience narratives may come from integrating knowledge across disciplines. Through reflecting on these case studies, we identified cross-cutting challenges regarding consent processes, narrative analysis, and the 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. In presenting what we learned, our intent was to demonstrate that greater knowledge on narrative practices can emerge through interdisciplinary contact and inform future decision-making on narrative practices by researchers working across disciplines. We conclude by contemplating interdisciplinary explorations with the potential to expand knowledge, including examining the use of pathographic narratives in philosophical inquiry.