Navigating the mental health system: Narratives of identity and recovery among people with psychosis across ethnic groups

Lawrence, Vanessa; McCombie, Catherine; Nikolakopoulos, G.; Morgan, Craig

doi:10.1016/j.socscimed.2021.113981

Cited by 14 publications

(29 citation statements)

References 32 publications

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“…[ [63][64][65][66][67]74,78,79,85,90] "Alien" services: Western "medical" models of illness conflict with social and holistic explanations Clash between individual illness explanations and medical diagnosis. Not a mental illness but a response to social conditions and systemic trauma.…”

Section: Epistemic Tensions Social Causes Of Illnessmentioning

confidence: 99%

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Understanding ethnic inequalities in mental healthcare in the UK: A meta-ethnography

et al. 2022

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Background Evidence regarding the presence and persistence of ethnic inequalities in mental healthcare is well established. The reasons for these inequalities and lack of progress in diminishing them are less understood. This meta-ethnography aims to provide a new conceptual understanding of how ethnic inequalities are created and sustained; this is essential to develop effective interventions. Specifically, we sought to understand why people from ethnic minority groups are underrepresented in primary care mental health service provision and overrepresented in crisis pathways and detention. Methods and findings Following eMERGe guidelines for meta-ethnographies, we searched OpenGrey, Kings Fund, CINAHL, Medline, PsycINFO, and Social Care Online databases for qualitative articles published from database inception until October 2, 2022, using broad categories of search terms relating to “ethnicity AND (mental illness/mental health/emotional distress) AND (help-seeking/service utilisation/experience/perception/view).” We included all conceptually rich articles that used qualitative methods of data collection and analysis and excluded non-UK studies and those that focused solely on causation of mental illness. Our patient, public, and practitioner lived experience advisory group provided feedback and input on key stages of the project including search terms, research questions, data analysis, and dissemination. A total of 14,142 articles were identified; 66 met the inclusion criteria. We used reciprocal, refutational, and line of argument analytical approaches to identify convergence and divergence between studies. The synthesis showed that current models of statutory mental healthcare are experienced as a major barrier to the delivery of person-centred care to those in ethnic minority groups due to the perceived dominance of monocultural and reductionist frameworks of assessment and treatment (described as “medical” and “Eurocentric”) and direct experiences of racist practice. The lack of socially oriented and holistic frameworks of knowledge and understanding in medical training and services is experienced as epistemic injustice, particularly among those who attribute their mental illness to experiences of migration, systemic racism, and complex trauma. Fear of harm, concerns about treatment suitability, and negative experiences with health providers such as racist care and medical neglect/injury contribute to avoidance of, and disengagement from, mainstream healthcare. The lack of progress in tackling ethnic inequalities is attributed to failures in coproduction and insufficient adoption of existing recommendations within services. Study limitations include insufficient recording of participant characteristics relating to generational status and social class in primary studies, which prevented exploration of these intersections. Conclusions In this study, we found that the delivery of safe and equitable person-centred care requires a model of mental health that is responsive to the lived experiences of people in ethnic minority groups. For the people considered in this review, this requires better alignment of mental health services with social and anti-racist models of care. Our findings suggest that intersections related to experiences of racism, migration, religion, and complex trauma might be more relevant than crude ethnic group classifications. Strategies to tackle ethnic inequalities in mental healthcare require an evaluation of individual, systemic, and structural obstacles to authentic and meaningful coproduction and implementation of existing community recommendations in services.

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Section: Epistemic Tensions Social Causes Of Illnessmentioning

confidence: 99%

“…Trauma-informed approaches experienced positively by refugees "she saved my life." [54,[67][68][69]75,82,85,90,108] General Practice GP setting considered to be less stigmatising than psychiatric hospital. Relationship with GP felt safe and trusting.…”

Section: Informal Support Networkmentioning

confidence: 99%

Understanding ethnic inequalities in mental healthcare in the UK: A meta-ethnography

et al. 2022

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“…While the aims of these studies were not explicitly therapeutic, findings suggest participatory projects do have the potential to empower participants (Casey & Webb, 2019 ) to talk about their recoveries (Anderson Clarke & Warner, 2016 ) and “lead to paradigm shifts that can provide a roadmap to effectively address disparities in mental health” (Abdi et al, 2021 , p. 1). Such ideas are in line with experience-centred research addressing illness narratives founded on the understanding that the process of telling one’s own story and expression of deep feeling can be empowering, have healing effects, and can help with sense-making and strengthening of identity (Lawrence et al, 2021 ).…”

Section: Discussionmentioning

confidence: 74%

Lived Experiences of Mental Health Recovery in Persons of Culturally and Linguistically Diverse (CALD) Backgrounds within the Australian Context

Levy-Fenner

Colucci

McDonough

2022

J. Psychosoc. Rehabil. Ment. Health

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Lived experience research related to mental health recovery is advancing, but there remains a lack of narrative material from the perspectives of people from under-represented, non-dominant cultural backgrounds in this domain. This study aimed to explore the lived experiences of mental health recovery in people of culturally and linguistically diverse (CALD) backgrounds in the Australian context. The current study involved a secondary analysis of audio and visual data collected during the digital storytelling project Finding our way in Melbourne, Australia. Thematic analysis was used to understand the lived experience narratives of nine participants in relation to mental health recovery. Five themes were identified through an iterative process of analysis, including Newfound opportunities and care, Family as key motivators and facilitators, Coping and generativity, Cultivating self-understanding and resilience, and Empowerment through social engagement. First person lived experience narratives offer deep insight into understanding the ways in which individuals of marginalised communities conceptualise and embody recovery. These findings further the literature and understanding on how to better serve the needs of people with mental health challenges from CALD communities through informed knowledge of what may be helpful to, and meaningful in, individuals’ recoveries.

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“…This creates and reinforces narratives of inferiority. For example, a recent study on the recovery and identity narratives of people experiencing psychosis across ethnic groups highlights how diagnostic classifications may enhance the perceived ‘differentness’ of people with lived experience from the rest of the population, leading both to public and internalised stigma, particularly for those from already-marginalised populations ( Lawrence et al, 2021 ). Plummer describes this process as “narrative othering”, a process which creates ‘out groups’ and ‘outsiders’ who can become ‘the other’ and even ‘the enemy’ ( 2019 , p. 72).…”

Section: Discussionmentioning

confidence: 99%

“…Inclusion criteria common to all groups were: aged over 18; willing to discuss experiences; able to give informed consent; fluent in English. Additional inclusion criteria were as follows: group A, people with self-identified experiences of psychosis, who are more likely to experience stigma and discrimination than those experiencing other forms of mental distress ( Colizzi et al, 2020 ; Gronholm et al, 2017 ); Group B, people from Black, Asian and minority ethnic communities, who experience persistent inequalities in accessing mental healthcare ( Lawrence et al, 2021 ); Group C, people from groups not well-engaged with by mental health services, including lesbian, gay, bisexual, trans and queer (LGBTQ+) communities ( Rees et al, 2021 ) and people with multiple complex needs (experiences of homelessness, substance misuse issues and/or offending) ( Kuluski et al, 2017 ); and Group D, peer support workers, trainers or researchers in statutory or voluntary roles, who report marginalisation and discrimination around their role and use of their lived experience ( Firmin et al, 2019 ; Voronka, 2016 ).…”

Section: Methodsmentioning

confidence: 99%

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

et al. 2022

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Mental health ‘recovery narratives’ are increasingly used within teaching, learning and practice environments. The mainstreaming of their use has been critiqued by scholars and activists as a co-option of lived experience for organisational purposes. But how people report their experiences of telling their stories has not been investigated at scale. We present accounts from 71 people with lived experience of multiple inequalities of telling their stories in formal and informal settings. A reflexive thematic analysis was conducted within a critical constructivist approach. Our overarching finding was that questions of power were central to all accounts. Four themes were identified: (1) Challenging the status quo; (2) Risky consequences; (3) Producing ‘acceptable’ stories; (4) Untellable stories. We discuss how the concept of narrative power foregrounds inequalities in settings within which recovery stories are invited and co-constructed, and conclude that power imbalances complicate the seemingly benign act of telling stories of lived experience.

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Navigating the mental health system: Narratives of identity and recovery among people with psychosis across ethnic groups

Cited by 14 publications

References 32 publications

Understanding ethnic inequalities in mental healthcare in the UK: A meta-ethnography

Understanding ethnic inequalities in mental healthcare in the UK: A meta-ethnography

Lived Experiences of Mental Health Recovery in Persons of Culturally and Linguistically Diverse (CALD) Backgrounds within the Australian Context

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

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