Uses and Misuses of Recorded Mental Health Lived Experience Narratives in Healthcare and Community Settings: Systematic Review

Abstract

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?)

‘Maybe I Shouldn’t Talk’: The Role of Power in the Telling of Mental Health Recovery Stories

“…These aspects included their anger, experiences of abuse, political involvement, ongoing distress, less palatable types of distress and their perspectives on the contribution of systemic oppression such as racism to mental distress. These findings support concerns raised by existing studies that being asked for or required to produce narratives in mainstream contexts may constrain and restrict which experiences can be shared ( Costa et al, 2012 ; Fisher & Lees, 2016 ; Heinemeyer, 2019 ; Russo, 2016 ; Sapouna, 2021 ; Voronka & Grant, 2021 ; Woods et al, 2019 ; Yeo et al, 2022 ).…”

“…Our findings do not deny the many positive as well as negative impacts that lived experience stories can have on individual recipients ( Nurser et al, 2018 ; Rennick-Egglestone et al, 2019 ; Rennick-Egglestone, Morgan et al, 2019 ), or the undoubted benefits of peer support ( Gillard, 2019 ). However, they do support ongoing work which calls for practitioners and researchers to be alert to the ways in which lived experience narratives may be misused by services ( Yeo et al, 2022 ), and to be highly reflexive about how and why we are using them. Sapouna (2021) frames this in terms of a dual process of honouring what had been achieved by personal narratives, whilst problematizing what may be lost.…”

“…However, survivor-researchers, critical and community psychologists, medical sociologists and others suggest that the concept of recovery has since been co-opted by mental health policy and practice to serve more neoliberal purposes, with an over-emphasis on individualism, a paradoxical focus on deficit/illness, and a de-emphasis of the social and structural causes of mental distress ( Beresford, 2019 ; Harper & Speed, 2012 ; McCabe et al, 2018 ; Pilgrim & McCranie, 2013 ). With this shift, activists and researchers have raised concerns that stories of lived experience are being similarly co-opted to fit normative organisational agendas at the expense of offering more diverse understandings and templates of recovery ( Kaiser et al, 2020 ; Topor et al, 2021 ; Woods et al, 2019 ; Yeo et al, 2022 ). In these contexts, the risk is that telling ‘recovery’ stories can become more about conformity than about emancipation.…”

“…Or services may invite stories which reproduce social structures and dominant cultures through more inadvertent actions ( Fisher & Lees, 2016 ). Either way, the effect may be that the resulting recovery stories suit the purposes of an institution, which may differ from those of the narrator in significant ways ( Yeo et al, 2022 ).…”

Development and delivery cost of digital health technologies for mental health: Application to the Narrative Experiences Online Intervention

“…The impact of recovery narratives was then investigated in a systematic review ( 25 ), qualitative interviews ( 26 ), and experimental studies ( 27 , 28 ). Approaches to curation of recorded recovery narrative collections were developed through systematic review ( 29 ), stakeholder consultation ( 30 ) and best practice guidelines development ( 31 ). These studies, together with related work on post-traumatic growth ( 32 , 33 ), non-service user perspectives ( 34 ), institutional injustice ( 35 ), and clinician perspectives on use of narratives in practice ( 36 ), provided the theory base.…”