Assessing Diversity and Inclusivity is the Next Frontier in Mental Health Recovery Narrative Research and Practice

Abstract

Demand for digital health interventions is increasing in many countries. The use of recorded mental health recovery narratives in digital health interventions is becoming more widespread in clinical practice. Mental health recovery narratives are first-person lived experience accounts of recovery from mental health problems, including struggles and successes over time. Helpful impacts of recorded mental health recovery narratives include connectedness with the narrative and validation of experiences. Possible harms include feeling disconnected and excluded from others. Diverse narrative collections from many types of narrators and describing multiple ways to recover are important to maximize the opportunity for service users to benefit through connection and to minimize the likelihood of harm. Mental health clinicians need to know whether narrative collections are sufficiently diverse to recommend to service users. However, no method exists for assessing the diversity and inclusivity of existing or new narrative collections. We argue that assessing diversity and inclusivity is the next frontier in mental health recovery narrative research and practice. This is important, but methodologically and ethically complex. In this viewpoint, we propose and evaluate one diversity and two inclusivity assessment methods. The diversity assessment method involves use of the Simpson Diversity Index. The two inclusivity assessment methods are based on comparator demographic rates and arbitrary thresholds, respectively. These methods were applied to four narrative collections as a case study. Refinements are needed regarding a narrative assessment tool in terms of its practicality and cultural adaptation.

Effectiveness and cost‐effectiveness of online recorded recovery narratives in improving quality of life for people with non‐psychotic mental health problems: a pragmatic randomized controlled trial

“…Therefore, population‐scale deployment of the intervention may lead to a virtuous circle of narrative donation, with each donation increasing the diversity of mental health experiences present in the collection. This is important, since the NEON Impact model positions connection with a narrative as a mechanism, and the likelihood of connection is enhanced by greater narrative diversity in the collection 47 .…”

Perception and appropriation of a web-based recovery narratives intervention: qualitative interview study

“…Kotera et al have proposed diversity and inclusivity metrics for recovery narratives. These are broadly applicable beyond mental health ( 48 ), and are also well-aligned with responsible innovation practices ( 49 ) which are emerging as critically-important issues in healthcare research and development.…”

Pragmatic, feasibility randomized controlled trial of a recorded mental health recovery narrative intervention: narrative experiences online intervention for informal carers (NEON-C)

“…Developed in collaboration with a Lived Experience Advisory Panel (LEAP), the NEON Intervention is fully online with no face-to-face contact with researchers or clinicians. It provided free access to a curated and diverse ( 14 ) collection of recorded mental health recovery narratives (NEON Collection) ( 9 ), which consisted of 687 diverse lived experience narratives from people with mental health problems.…”