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.

Highlights

  • BackgroundRecovery has become a guiding ethos for mental health research, policy, and service development [1]

  • 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

  • Documents were included in the synthesis if (1) they related to a collection containing at least three recovery narratives about mental health, (2) the document contained researcher- or curator-derived information about decision making around the curation of the collection, (3) the document was published in English, (4) the publication date was before July 31, 2018, and (5) the collection was publicly available

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Summary

Introduction

BackgroundRecovery has become a guiding ethos for mental health research, policy, and service development [1]. The development of an associated recovery movement has centered on the experience of the individual [6] and emphasizes the importance of including knowledge from experts by experience in understanding mental health problems [7] This orientation places an increased emphasis on first-person knowledge and encourages provision of care to be tailored to the individual [8]. Live recovery narratives are shared in the context of an in-person or Web-based relationship and involve some form of mutual exchange, whereas recorded recovery narratives are presented in an invariant form, frequently as text, audio, or video but occasionally in formats such as visual artworks [11] Access to both categories of narrative is increasing [10], and a recent systematic review has identified both helpful and harmful impacts that they can have on recipients [10]. No systematic review has been conducted of research into curatorial decision making

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