Recorded Mental Health Recovery Narratives as a Resource for People Affected by Mental Health Problems: Development of the Narrative Experiences Online (NEON) Intervention

Abstract

Background The internet enables sharing of narratives about health concerns on a substantial scale, and some digital health narratives have been integrated into digital health interventions. Narratives describing recovery from health problems are a focus of research, including those presented in recorded (eg, invariant) form. No clinical trial has been conducted on a web-based intervention providing access to a collection of Recorded Recovery Narratives (RRNs). Objective This study presents knowledge produced through the development of the Narrative Experiences Online (NEON) Intervention, a web-based intervention incorporating the algorithmic recommendation of RRNs. Methods Knowledge was gathered through knowledge integration (KI) activities. KI1 synthesized previous studies to produce the NEON Impact Model describing how accessing RRNs produces health-related outcomes. KI2 developed curation principles for the NEON Collection of RRNs through consultation with the NEON Lived Experience Advisory Panel and the curation of a preliminary collection. KI3 identified harm minimization strategies for the NEON Intervention through consultation with the NEON International Advisory Board and Lived Experience Advisory Panel. The NEON Intervention was finalized through 2 research studies (RS). In RS1, mental health service users (N=40) rated the immediate impact of randomly presented narratives to validate narrative feedback questions used to inform the recommendation algorithm. In RS2, mental health service users (n=25) were interviewed about their immediate response to a prototype of the NEON Intervention and trial procedures and then were interviewed again after 1 month of use. The usability and acceptability of the prototype and trial procedures were evaluated and refinements were made. Results KI1 produced the NEON Impact Model, which identifies moderators (recipient and context), mechanisms of connection (reflection, comparison, learning, and empathy), processes (identification of change from narrative structure or content and internalization of observed change), and outcomes (helpful and unhelpful). KI2 identified 22 curation principles, including a mission to build a large, heterogeneous collection to maximize opportunities for connection. KI3 identified seven harm minimization strategies, including content warnings, proactive and reactive blocking of narratives, and providing resources for the self-management of emotional distress. RS1 found variation in the impact of narratives on different participants, indicating that participant-level feedback on individual narratives is needed to inform a recommender system. The order of presentation did not predict narrative feedback. RS2 identified amendments to web-based trial procedures and the NEON Intervention. Participants accessed some narratives multiple times, use reduced over the 4-week period, and narrative feedback was provided for 31.8% (105/330) of narrative accesses. Conclusions RRNs can be integrated into web-based interventions. Evaluating the NEON Intervention in a clinical trial is feasible. The mixed methods design for developing the NEON Intervention can guide its extension to other clinical populations, the design of other web-based mental health interventions, and the development of narrative-based interventions in mental health.

Characteristics of alcohol recovery narratives: Systematic review and narrative synthesis

“…The review team included researchers with specialist background in mental health, lived experience narratives [ 13 ], psychology, public health, epidemiology, qualitative research, alcohol care, and liver medicine.…”

“…Recovery narratives can be defined as personal stories of health problems and of recovery [ 13 ], which can be shared with others [ 14 ], and which can provide recipients with insights into the phenomenology of recovery [ 15 ]. In this regards, the Social Identity Model of Recovery (SIMOR) identifies alcohol recovery as “a process of social identity transitioning, wherein an individual becomes a member of a recovery-orientated group, and in so doing internalizes the values and beliefs of the in-group which, in turn, leads to a new sense of self (or recovery identity) that strongly guides their attitudes and behaviours” (page 113) [ 7 , 16 ].…”

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

“…National anti-stigma campaigns such as Time to Change have used lived experience narratives in their campaign to address community attitudes. 8 They are also used in digital interventions such as in Narrative Experiences Online (NEON) Intervention 9 currently being evaluated in three clinical trials. 10 Lived experience narratives have also played a role in mental health research activities as data for analysis or in the case of digital storytelling as a potential research method for facilitating shared dialogue between stakeholders in mental health on lived experience.…”

Typology of content warnings and trigger warnings: Systematic review

“…The study was conducted as part of the Narrative Experiences Online (NEON) study ( http://www.researchintorecovery.com/neon ), which aims to evaluate the impact of recorded recovery narratives [ 30 ] when used as a mental health intervention [ 31 ]. In developing the intervention [ 32 ], we needed to decide whether to use content warnings when delivering recorded recovery narratives to participants in randomised controlled trials for people with experience of psychosis (NEON Trial: ISRCTN11152837), for people with experience of non-psychosis mental health problems (NEON-O Trial: ISRCTN63197153), and for informal mental health carers (NEON-C trial: ISRCTN76355273) [ 33 ]. The typology developed in this review is therefore called the NEON content warning typology.…”