The VOICES typology of curatorial decisions in narrative collections of the lived experiences of mental health service use, recovery or madness: qualitative study

Yeo, C. and Hare-Duke, L. and Rennick-Egglestone, S. and Bradstreet, S. and Callard, Felicity and Hui, A. and Llewellyn-Beardsley, J. and Longden, E. and McDonough, T. and McGranaghan, R. and Ng, F. and Pollock, K. and Roe, J. and Slade, M. (2020) The VOICES typology of curatorial decisions in narrative collections of the lived experiences of mental health service use, recovery or madness: qualitative study. JMIR Mental Health 7 (9), e16290. ISSN 2368-7959.

Abstract

Background: Collections of lived experience narratives are increasingly used in health research and medical practice. However there is limited research concerning the decision-making processes in curating narrative collections, and of the work that curators do as they build and publish collections. Objective: The objectives of this study were 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 decision. Methods: A preliminary typology was developed by synthesising 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 semi-structured interviews with a maximum variation sample of 30 curators from 7 different countries. All participants had experience of curating narrative collections of the lived experiences of mental health service use, recovery or madness. Thematic analysis through constant comparison was conducted by a multidisciplinary team. Results: The final typology identified six themes, giving the acronym VOICES: Values and motivations, Organisation, Inclusion and exclusion, Control and collaboration, Ethics and legal, Safety and wellbeing. 26 sub-themes relating to curation decisions were identified. Conclusions: The VOICES typology identifies key decisions to consider when curating narrative collections about the lived experiences of mental health service use, recovery or madness. The VOICES typology 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, organising and sharing narratives. Future research might seek to document the usage of such a tool by curators, and hence examine how best to use VOICES to support decision making.

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