JMIR Publications

ABSTRACT

Background:

Mental health recovery narratives are first-person lived experience accounts of recovery from mental health problems, which refer to events or actions over a period of time. They are readily available, either individually in digital media hosting services such as YouTube, or in collections of recovery narratives published in books, health service booklets or online. Collection of recovery narratives have been used in a range of mental health interventions, including anti-stigma campaigns. Organisations 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.

Objective:

To produce a conceptual framework identifying key concerns in the curation of collections of mental health recovery narratives, and identifying and categorising curatorial choices and decisions.

Methods:

A conceptual framework was produced through a systematic review and qualitative evidence synthesis. Research publications were identified through searching of bibliographic databases (n=13), indexes of specific journals (n=3) and grey literature repositories (n=4). Informal knowledge about curation was identified through searching editorial chapters of electronically-available books (n=50), inspection of public documents provided by online 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 inductive thematic analysis. Sub-group analyses were conducted to identify differences in curatorial concerns between online and printed collections. The review protocol was pre-registered (PROSPERO CRD42018086997).

Results:

5,410 documents were screened. 23 documents were included. These comprised 1 research publication and 22 informal documents. Nine 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, organising and presenting recovery narratives, ethical and legal issues around collections, and the relationship to society of the collection. Online collections placed more emphasis on (1) providing benefits for narrators (2) safety for recipients. Printed collections placed more emphasis on the ordering of narrative within printed material, and the political context.

Conclusions:

Only one 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 healthcare interventions which 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.