Abstract
BACKGROUND: Collections of lived experience narratives are increasingly used in health research and medical practice. However, there is limited research with respect to the decision-making processes involved in curating narrative collections and the work that curators do as they build and publish collections. OBJECTIVE: This study aims to develop a typology of curatorial decisions involved in curating narrative collections presenting lived experiences of mental health service use, recovery, or madness and to document approaches selected by curators in relation to identified curatorial decisions. METHODS: A preliminary typology was developed by synthesizing the results of a systematic review with insights gained through an iterative consultation with an experienced curator of multiple recovery narrative collections. The preliminary typology informed the topic guide for semistructured interviews with a maximum variation sample of 30 curators from 7 different countries. All participants had the experience of curating narrative collections of the lived experiences of mental health service use, recovery, or madness. A multidisciplinary team conducted thematic analysis through constant comparison. RESULTS: The final typology identified 6 themes, collectively referred to as VOICES, which stands for values and motivations, organization, inclusion and exclusion, control and collaboration, ethics and legal, and safety and well-being. A total of 26 subthemes related to curation decisions were identified. CONCLUSIONS: The VOICES typology identifies the key decisions to consider when curating narrative collections about the lived experiences of mental health service use, recovery, or madness. It might be used as a theoretical basis for a good practice resource to support curators in their efforts to balance the challenges and sometimes conflicting imperatives involved in collecting, organizing, and sharing narratives. Future research might seek to document the use of such a tool by curators and hence examine how best to use VOICES to support decision making.