"Nothing's changed, baby": How the mental health narratives of people with multiple and complex needs disrupt the recovery framework
In: SSM - Mental health, Band 3, S. 100221
ISSN: 2666-5603
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In: SSM - Mental health, Band 3, S. 100221
ISSN: 2666-5603
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. 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. Objective: This study aimed to produce a conceptual framework identifying and categorizing decisions made in the curation of mental health recovery narrative collections. Methods: A 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. Results: A 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. Conclusions: Only 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.
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Mental health lived experience narratives are first-person accounts of people with experience of mental health problems. They have been published in journals, books and online, and used in healthcare interventions and anti-stigma campaigns. There are concerns about their potential misuse. A four-language systematic review was conducted of published literature characterizing uses and misuses of mental health lived experience narratives within healthcare and community settings. 6531 documents in four languages (English, Danish, Swedish, Norwegian) were screened and 78 documents from 11 countries were included. Twenty-seven uses were identified in five categories: political, societal, community, service level and individual. Eleven misuses were found, categorized as relating to the narrative (narratives may be co-opted, narratives may be used against the author, narratives may be used for different purpose than authorial intent, narratives may be reinterpreted by others, narratives may become patient porn, narratives may lack diversity), relating to the narrator (narrator may be subject to unethical editing practises, narrator may be subject to coercion, narrator may be harmed) and relating to the audience (audience may be triggered, audience may misunderstand). Four open questions were identified: does including a researcher's personal mental health narrative reduce the credibility of their research?: should the confidentiality of narrators be protected?; who should profit from narratives?; how reliable are narratives as evidence?).
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BackgroundNarratives of recovery from mental health distress have played a central role in the establishment of the recovery paradigm within mental health policy and practice. As use of recovery narratives increases within services, it is critical to understand how they have been characterised, and what may be missing from their characterisation thus far. The aim of this review was to synthesise published typologies in order to develop a conceptual framework characterising mental health recovery narratives.MethodA systematic review was conducted of published literature on the characteristics of mental health recovery narratives. Narrative synthesis involved identifying characteristics and organising them into dimensions and types; and subgroup analysis based on study quality, narrator involvement in analysis, diagnosis of psychosis and experience of trauma. The synthesis was informed by consultation with a Lived Experience Advisory Panel and an academic panel. The review protocol was pre-registered (Prospero CRD42018090188).Results8951 titles, 366 abstracts and 121 full-text articles published January 2000-July 2018 were screened, of which 45 studies analysing 629 recovery narratives were included. A conceptual framework of mental health recovery narratives was developed, comprising nine dimensions (Genre; Positioning; Emotional Tone; Relationship with Recovery; Trajectory; Use of Turning Points; Narrative Sequence; Protagonists; and Use of Metaphors), each containing between two and six types. Subgroup analysis indicated all dimensions were present across most subgroups, with Turning Points particularly evident in trauma-related studies.ConclusionsRecovery narratives are diverse and multidimensional. They may be non-linear and reject coherence. To a greater extent than illness narratives, they incorporate social, political and rights aspects. Approaches to supporting development of recovery narratives should expand rather than reduce available choices. Research into the narratives of more diverse populations is ...
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Background: Narratives of recovery from mental health distress have played a central role in the establishment of the recovery paradigm within mental health policy and practice. As use of recovery narratives increases within services, it is critical to understand how they have been characterised, and what may be missing from their characterisation thus far. The aim of this review was to synthesise published typologies in order to develop a conceptual framework characterising mental health recovery narratives. Method: A systematic review was conducted of published literature on the characteristics of mental health recovery narratives. Narrative synthesis involved identifying characteristics and organising them into dimensions and types; and subgroup analysis based on study quality, narrator involvement in analysis, diagnosis of psychosis and experience of trauma. The synthesis was informed by consultation with a Lived Experience Advisory Panel and an academic panel. The review protocol was pre-registered (Prospero CRD42018090188). Results: 8951 titles, 366 abstracts and 121 full-text articles published January 2000-July 2018 were screened, of which 45 studies analysing 629 recovery narratives were included. A conceptual framework of mental health recovery narratives was developed, comprising nine dimensions (Genre; Positioning; Emotional Tone; Relationship with Recovery; Trajectory; Use of Turning Points; Narrative Sequence; Protagonists; and Use of Metaphors), each containing between two and six types. Subgroup analysis indicated all dimensions were present across most subgroups, with Turning Points particularly evident in trauma-related studies. Conclusions: Recovery narratives are diverse and multidimensional. They may be non-linear and reject coherence. To a greater extent than illness narratives, they incorporate social, political and rights aspects. Approaches to supporting development of recovery narratives should expand rather than reduce available choices. Research into the narratives of more diverse populations is needed. The review supports trauma-informed approaches, and highlights the need to understand and support post-traumatic growth for people experiencing mental health issues.
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