Equity in Narrative Recovery Stories

 

 

Introduction

 

Mental health disparities research has identified several challenges faced by minorities in mental healthcare; however, it lacks the representation of voice, which limits understandings of individuals’ lived experiences. Systematic exclusion of marginalized voices perpetuates the inequities that exist within health care, as individuals are continuously under-represented in services planning and under-served by institutions. When there is a lack of meaningful participation in research, dialogue, and policy recommendations, the views of marginalized communities are routinely left out of the process of influencing policy and practice. This can have a negative impact on a people’s quality of life, mortality, and general health. It can also have a negative impact on treatment compliance, mental health service utilization, and engagement effectiveness (Hui 2021). Psychosis is a mental health condition that is uniquely associated with a loss of voice because it inherently creates major disruptions in a person’s narrative and sense of self (Lysaker, Wickett, Wilke, & Lysaker, 2003; Kline, Horn, & Patterson, 1996). Due to the highly subjective nature of psychosis, it is crucial to understand recovery in the cultural, societal and familial context of its narrator (Lee 2020). There is limited qualitative work exploring the lived experiences of people who identify as racial/ethnic minorities and/or LGBTQ with psychosis, in the context of their minority status. This study examines the role of bias, stigma, cultural factors, and injustice in people’s experiences with mental health care, through semi-structured interviews. Because it would be impossible to understand an individual’s story without it, we also explored the impact of intersecting identities in participants’ experiences with mental health care. We consider how investigators, educators, and clinicians can address these problems to improve health equity.

 

 

Aims

This aim of this study is to explore the role of bias, stigma, cultural factors, and injustice in the mental healthcare experiences of racial/ethnic minorities and/or LGBQT people with psychosis.

 

Methods

Nine participants were recruited through psychosis care networks including PEPPNET and EPI- CAL, re-contact of participants from previous early psychosis studies (PI: Loewy), and racial, ethnic, gender, and sexual orientation minority community centers. Semi-structured interviews were used to explore the role of bias, cultural factors, oppression, and intersectionality on participants’ experiences with mental health care. Three semi-structured interviews were conducted and recorded with each participant via Zoom video call. NVivo 12 was used for coding. Themes were developed and refined collaboratively by two coders. We conducted inductive thematic analysis, allowing the data to guide theme development.

Results