Recorded mental health recovery narratives as a resource for people affected by mental health problems: development of the narrative experiences online (NEON) intervention

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dc.contributor.authorSlade, Mike
dc.contributor.authorRennick-Egglestone, Stefan
dc.contributor.authorLlewellyn-Beardsley, Joy
dc.contributor.authorYeo, Caroline
dc.contributor.authorRoe, James
dc.contributor.authorBailey, Sylvia
dc.contributor.authorSmith, Roger Andrew
dc.contributor.authorBooth, Susie
dc.contributor.authorHarrison, Julian
dc.contributor.authorBhogal, Adaresh
dc.contributor.authorPenas, Patricia
dc.contributor.authorHui, Ada
dc.contributor.authorQuadri, Dania
dc.contributor.authorRobinson, Clare
dc.contributor.authorSmuk, Melanie
dc.contributor.authorFarkas, Marianne
dc.contributor.authorDavidson, Larry
dc.contributor.authorvan der Krieke, Lian
dc.contributor.authorSlade, Emily
dc.contributor.authorBond, Carmel
dc.contributor.authorNicholson, Joe
dc.contributor.authorGrundy, Andrew
dc.contributor.authorCharles, Ashleigh
dc.contributor.authorHare-Duke, Laurie
dc.contributor.authorPollock, Kristian
dc.contributor.authorNg, Fiona
dc.date.accessioned2025-09-10T15:14:55Z
dc.date.available2025-09-10T15:14:55Z
dc.date.issued2021-05-27
dc.date.updated2025-09-10T15:14:55Z
dc.description.abstractBackground: 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.en
dc.description.sponsorshipThis paper is independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research Programme (Programme Grants for Applied Research, Personal Experience as a Recovery Resource in Psychosis: NEON Programme, RP-PG-0615-20016). MS acknowledges the support of the Center for Mental Health and Substance Abuse, University of South-Eastern Norway, and the NIHR Nottingham Biomedical Research Centre. JR acknowledges the support of the NIHR Collaboration for Leadership in Applied Health Research and Care East Midlands, now recommissioned as the NIHR Applied Research Collaboration East Midlands. CB and AC are supported by the Economic and Social Research Council (grant ES/P000711/1). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.en
dc.identifier.citationSlade, M., Rennick-Egglestone, S., Llewellyn-Beardsley, J., Yeo, C., Roe, J., Bailey, S., Smith, R. A., Booth, S., Harrison, J., Bhogal, A., Morán, P. P., Hui, A., Quadri, D., Robinson, C., Smuk, M., Farkas, M., Davidson, L., der Krieke, L. v., Slade, E., et al. (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). https://doi.org/10.2196/24417
dc.identifier.doi10.2196/24417
dc.identifier.eissn2561-326X
dc.identifier.urihttps://hdl.handle.net/20.500.14454/3587
dc.language.isoeng
dc.publisherJMIR Publications Inc.
dc.rights©Mike Slade, Stefan Rennick-Egglestone, Joy Llewellyn-Beardsley, Caroline Yeo, James Roe, Sylvia Bailey, Roger Andrew Smith, Susie Booth, Julian Harrison, Adaresh Bhogal, Patricia Penas Morán, Ada Hui, Dania Quadri, Clare Robinson, Melanie Smuk, Marianne Farkas, Larry Davidson, Lian van der Krieke, Emily Slade, Carmel Bond, Joe Nicholson, Andrew Grundy, Ashleigh Charles, Laurie Hare-Duke, Kristian Pollock, Fiona Ng
dc.subject.otherInternet
dc.subject.otherIntervention development
dc.subject.otherMental health
dc.subject.otherMobile phone
dc.subject.otherNarrative medicine
dc.subject.otherNarratives
dc.subject.otherOnline intervention
dc.subject.otherPatient involvement
dc.subject.otherRecovery
dc.subject.otherStorytelling
dc.titleRecorded mental health recovery narratives as a resource for people affected by mental health problems: development of the narrative experiences online (NEON) interventionen
dc.typejournal article
dcterms.accessRightsopen access
oaire.citation.issue5
oaire.citation.titleJMIR Formative Research
oaire.citation.volume5
oaire.licenseConditionhttps://creativecommons.org/licenses/by/4.0/
oaire.versionVoR
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