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

Slade, Mike; Rennick-Egglestone, Stefan; Llewellyn-Beardsley, Joy; Yeo, Caroline; Roe, James; Bailey, Sylvia; Smith, Roger Andrew; Booth, Susie; Harrison, Julian; Bhogal, Adaresh; Penas Morán, Patricia; Hui, Ada; Quadri, Dania; Robinson, Clare; Smuk, Melanie; Farkas, Marianne; Davidson, Larry; van der Krieke, Lian; Slade, Emily; Bond, Carmel; Nicholson, Joe; Grundy, Andrew; Charles, Ashleigh; Hare-Duke, Laurie; Pollock, K; Ng, Fiona

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.

Trial registration:
The NEON Intervention will be used in the NEON Trial (ISRCTN11152837), for people with experience of psychosis, the NEON-O Trial (ISRCTN63197153) for people with experience of non-psychosis mental health problems, and the NEON-C trial (ISRCTN76355273) for informal carers.

Citation

Slade, M., Rennick-Egglestone, S., Llewellyn-Beardsley, J., Yeo, C., Roe, J., Bailey, S., Smith, R. A., Booth, S., Harrison, J., Bhogal, A., Penas Morán, P., Hui, A., Quadri, D., Robinson, C., Smuk, M., Farkas, M., Davidson, L., van der Krieke, L., Slade, E., Bond, C., …Ng, F. (2021). Recorded Mental Health Recovery Narratives as a Resource for People Affected by Mental Health Problems: Development of the Narrative Experiences Online (NEON) Intervention. JMIR Formative Research, 5(5), Article e24417. https://doi.org/10.2196/24417

• Journal Article Type: Article
• Acceptance Date: Nov 13, 2020
• Online Publication Date: May 27, 2021
• Publication Date: May 27, 2021
• Deposit Date: Nov 13, 2020
• Publicly Available Date: May 27, 2021
• Journal: JMIR Formative Research
• Electronic ISSN: 2561-326X
• Peer Reviewed: Peer Reviewed
• Volume: 5
• Issue: 5
• Article Number: e24417
• DOI: https://doi.org/10.2196/24417
• Keywords: Narratives; Storytelling; Intervention Development; Mental Health; Online Intervention; Patient Involvement; Narrative Medicine; Internet; Recovery
• Public URL: https://nottingham-repository.worktribe.com/output/5039135
• Publisher URL: https://formative.jmir.org/2021/5/e24417