Curation of Mental Health Recovery Narrative Collections: Systematic Review and Qualitative Synthesis

Abstract

BackgroundMental health recovery narratives are first-person lived experience accounts of recovery from mental health problems, which refer to events or actions over a period. They are readily available either individually or in collections of recovery narratives published in books, health service booklets, or on the Web. Collections of recovery narratives have been used in a range of mental health interventions, and organizations or individuals who curate collections can therefore influence how mental health problems are seen and understood. No systematic review has been conducted of research into curatorial decision making.ObjectiveThis study aimed to produce a conceptual framework identifying and categorizing decisions made in the curation of mental health recovery narrative collections.MethodsA conceptual framework was produced through a systematic review and qualitative evidence synthesis. Research articles were identified through searching bibliographic databases (n=13), indexes of specific journals (n=3), and gray literature repositories (n=4). Informal documents presenting knowledge about curation were identified from editorial chapters of electronically available books (n=50), public documents provided by Web-based collections (n=50), and prefaces of health service booklets identified through expert consultation (n=3). Narrative summaries of included research articles were produced. A qualitative evidence synthesis was conducted on all included documents through an inductive thematic analysis. Subgroup analyses were conducted to identify differences in curatorial concerns between Web-based and printed collections.ResultsA total of 5410 documents were screened, and 23 documents were included. These comprised 1 research publication and 22 informal documents. Moreover, 9 higher level themes were identified, which considered: the intended purpose and audience of the collection; how to support safety of narrators, recipients, and third parties; the processes of collecting, selecting, organizing, and presenting recovery narratives; ethical and legal issues around collections; and the societal positioning of the collection. Web-based collections placed more emphasis on providing benefits for narrators and providing safety for recipients. Printed collections placed more emphasis on the ordering of narrative within printed material and the political context.ConclusionsOnly 1 research article was identified despite extensive searches, and hence this review has revealed a lack of peer-reviewed empirical research regarding the curation of recovery narrative collections. The conceptual framework can be used as a preliminary version of reporting guidelines for use when reporting on health care interventions that make use of narrative collections. It provides a theory base to inform the development of new narrative collections for use in complex mental health interventions. Collections can serve as a mechanism for supporting collective rather than individual discourses around mental health.

The VOICES Typology of Curatorial Decisions in Narrative Collections of the Lived Experiences of Mental Health Service Use, Recovery, or Madness: Qualitative Study

“…This was refined through 6 consultations with the expert curator. A preliminary typology of curatorial decisions and approaches was developed by synthesizing the initial expert curator list with material presented in an earlier systematic review [ 20 ]. The preliminary typology, which had 11 themes, can be found in Multimedia Appendix 1 [ 1 ].…”

“…As narratives about recovery or madness inherently incorporate discussions of personal distress or trauma, there are challenges in the design of curatorial processes such as personal, legal, or ethical dilemmas linked to the identification of narrators or third parties. They also include broader ethical and political issues related to the representation and dissemination of distressing and difficult material, which might affect those exposed to recovery narratives and those producing them [ 20 ]. In addition, there are unresolved questions about what it means to reinscribe the identity of the service user or survivor, through the use of recovery narratives, as one closely associated with distressing events or experiences.…”

“…Initial insights into curatorial practices have been developed in a systematic review and qualitative evidence synthesis [ 20 ]. The review included 1 research publication and 22 informal documents providing evidence of curation.…”

Impact of receiving recorded mental health recovery narratives on quality of life in people experiencing psychosis, people experiencing other mental health problems and for informal carers: Narrative Experiences Online (NEON) study protocol for three randomised controlled trials

“…Sharing of recovery narratives is common [6,7]. Informal peer support, involving interactions between individuals with similar experiences of health problems, is one example of a naturally occurring relationship in which live recovery narratives can be narrated and received.…”

“…Access to recorded narratives is increasing [6,7]. Substantial numbers of recorded recovery narratives are publicly available, distributed through mechanisms including books [16,17], health service booklets [18], online collections [19] and digital media hosting services [20].…”