“Not the story you want, I’m sure”: Mental health recovery and the narratives of people from marginalised communities

Llewellyn-Beardsley, Joy (2023) “Not the story you want, I’m sure”: Mental health recovery and the narratives of people from marginalised communities. PhD thesis, University of Nottingham.

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Abstract

Background: The dominant narrative in mental health policy and practice has shifted in the 21st century from one of chronic ill health or incurability to an orientation towards recovery. A recovery-based approach is now the most frequently used in services in the Global North, and its relevance has also been explored in Global South settings. Despite the ubiquity of the recovery approach, people experiencing poverty, homelessness, intersecting oppressions (based for example on race, ethnicity, gender, sexuality or ability), and other forms of social marginalisation remain under-represented within recovery-oriented research. More inclusive research has been called for to ensure that knowledge of recovery processes is not based solely on the experiences of the relatively well-resourced.

Personal narratives of recovery from mental distress have played a central role in the establishment of the recovery approach within mental health policy and practice. Originating in survivor/service-user movements, the use of ‘recovery narratives’ has now become widespread for diverse purposes, including staff training to improve service delivery and increase empathy, public health campaigns to challenge stigma, online interventions to increase access to self-care resources, and as a distinctive feature of peer support. Research suggests that recovery-focused narratives can have benefits and also risks for narrators and recipients. At the same time, the elicitation of such narratives by healthcare researchers, educators and practitioners has been problematised by survivor-researchers and other critical theorists, as a co-option of lived experience for neoliberal purposes.

Following a systematic review of empirical research studies undertaken on characteristics of recovery narratives (presented in Chapter 4), a need for empirical research on the narratives of people from socially marginalised groups was identified. What kinds of stories might we/they be telling, and what are their experiences of telling their stories? What do their experiences tell us about the use of stories within a recovery approach?

Aim: Drawing on a body of critical scholarship, my aim is to conduct an empirical inquiry into (i) characteristics of recovery stories told by people from socially marginalised groups, and (ii) their experiences of telling their stories in formal and everyday settings.

Method: I undertook a critical narrative inquiry based on the stories of 77 people from marginalised groups, collected in the context of a wider study. This comprised narratives from people with lived experience of mental distress who additionally met one or more of the following criteria: (i) had experiences of psychosis; (ii) were from Black, Asian and other minoritised ethnic communities; (iii) are under-served by services (operationalised as lesbian, gay, bi, trans, queer + communities (LGBTQ+) or people identified as having multiple and complex needs); or (iv) had peer support roles. Two-part interviews were conducted (18 conducted by me). Part A consisted of an open-ended question designed to elicit a narrative, and part B was a semi-structured interview inviting participants to reflect on their experiences of telling their recovery stories in different contexts. Following Riessman’s analytical approach, I undertook three forms of analysis: a structural narrative analysis of Part A across the dataset (informed by a preliminary conceptual framework developed in Chapter 4); a thematic analysis of Part B where participants additionally reflected on telling their stories; and an in-depth performative narrative analysis of two accounts (parts A and B) from people with multiple and complex needs.

Findings: In a structural analysis of Part A, the recovery narratives told by people from marginalised groups were found to be diverse and multidimensional. Most (97%) could be characterised by the nine dimensions described in the preliminary conceptual framework (Genre; Positioning; Emotional Tone; Relationship with Recovery; Trajectory; Turning Points; Narrative Sequence; Protagonists; and Use of Metaphors). Each dimension of the framework contained a number of different types. These were expanded as a result of the structural analysis to contain more types: for example, a ‘cyclical’ type of trajectory was added), and a more comprehensive typology of recovery narratives was produced. Two narratives were found to be ‘outliers’, in that their structure, form and content could not adequately be described by the majority of existing dimensions and types. These served as exemplars of the framework’s limitations.

In a thematic analysis of Part B, my overarching finding was that power differentials between narrators and recipients could be seen as the key factor affecting participants’ experiences of telling their recovery stories in formal and everyday settings. Four themes describing the possibilities and problems raised by telling their stories were identified: (i) ‘Challenging the status quo’; (ii) ‘Risky consequences’; (iii) ‘Producing acceptable stories’ and (iv) ‘Untellable stories’.

In a performative analysis of two narratives of people with multiple and complex needs (Parts A and B), I found two contrasting ways of responding to the invitation to tell a recovery story: a ‘narrative of personal lack’ and a ‘narrative of resistance’. I demonstrate how the genre of ‘recovery narrative’, with its focus on transformation at the level of personal identity, may function to occlude social and structural causes of distress, and reinforce ideas of personal responsibility for ongoing distress in the face of unchanging living conditions.

Conclusion: The recovery narratives of people from socially marginalised groups are diverse and multidimensional. Told in some contexts, they may hold power to challenge the status quo. However, telling stories of lived experience and recovery is risky, and there may be pressure on narrators to produce ‘acceptable’ stories, or to omit or de-emphasise experiences which challenge dominant cultural narratives. A recovery-based approach to the use of lived experience narratives in research and practice may be contributing towards an over-emphasis on individualist approaches to the reduction of distress. This over-emphasis can be seen to reflect what has been identified as a global trend towards the ‘instrumental’ use of personal narratives for utilitarian purposes based on market values. Attention to power differentials and structural as well as agentic factors is vital to ensure that the use of narratives in research and practice does not contribute towards a decontextualised, reductionist form of recovery which pays insufficient attention to the economic, institutional and political injustices that people experiencing mental distress may systematically endure. A sensitive and socially just use of lived experience narratives will remain alert to a variety of power dimensions present within the contexts in which they are shared and heard

Item Type: Thesis (University of Nottingham only) (PhD)
Supervisors: Edgley, Alison
Rennick-Egglestone, Stefan
Keywords: PhD thesis; mental health; recovery; recovery narratives; narrative theory
Subjects: W Medicine and related subjects (NLM Classification) > WM Psychiatry
Faculties/Schools: UK Campuses > Faculty of Medicine and Health Sciences > School of Health Sciences
Item ID: 73527
Depositing User: Llewellyn-Beardsley, Joy
Date Deposited: 31 Jul 2023 04:41
Last Modified: 31 Jul 2023 04:41
URI: https://eprints.nottingham.ac.uk/id/eprint/73527

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