Perception and appropriation of a web-based recovery narratives intervention: qualitative interview study
- PMID: 38419807
- PMCID: PMC10899698
- DOI: 10.3389/fdgth.2024.1297935
Perception and appropriation of a web-based recovery narratives intervention: qualitative interview study
Abstract
Introduction: Mental health recovery narratives are widely available to the public, and can benefit people affected by mental health problems. The NEON Intervention is a novel web-based digital health intervention providing access to the NEON Collection of recovery narratives. The NEON Intervention was found to be effective and cost-effective in the NEON-O Trial for people with nonpsychosis mental health problems (ISRCTN63197153), and has also been evaluated in the NEON Trial for people with psychosis experience (ISRCTN11152837). We aimed to document NEON Intervention experiences, through an integrated process evaluation.
Methods: Analysis of interviews with a purposive sample of intervention arm participants who had completed trial participation.
Results: We interviewed 34 NEON Trial and 20 NEON-O Trial participants (mean age 40.4 years). Some users accessed narratives through the NEON Intervention almost daily, whilst others used it infrequently or not at all. Motivations for trial participation included: exploring the NEON Intervention as an alternative or addition to existing mental health provision; searching for answers about mental health experiences; developing their practice as a mental health professional (for a subset who were mental health professionals); claiming payment vouchers. High users (10 + narrative accesses) described three forms of appropriation: distracting from difficult mental health experiences; providing an emotional boost; sustaining a sense of having a social support network. Most participants valued the scale of the NEON Collection (n = 659 narratives), but some found it overwhelming. Many felt they could describe the characteristics of a desired narrative that would benefit their mental health. Finding a narrative meeting their desires enhanced engagement, but not finding one reduced engagement. Narratives in the NEON Collection were perceived as authentic if they acknowledged the difficult reality of mental health experiences, appeared to describe real world experiences, and described mental health experiences similar to those of the participant.
Discussion: We present recommendations for digital health interventions incorporating collections of digital narratives: (1) make the scale and diversity of the collection visible; (2) provide delivery mechanisms that afford appropriation; (3) enable contributors to produce authentic narratives; (4) enable learning by healthcare professionals; (5) consider use to address loneliness.
Keywords: NEON Intervention; autobiography; digital health intervention; lived experience narrative; online intervention; psychosis; recovery narrative; recovery story.
© 2024 Ali, Rennick-Egglestone, Llewellyn-Beardsley, Ng, Yeo, Franklin, Perez Vallejos, Ben-Zeev, Kotera and Slade.
Conflict of interest statement
The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.
Figures
Similar articles
-
Recorded Mental Health Recovery Narratives as a Resource for People Affected by Mental Health Problems: Development of the Narrative Experiences Online (NEON) Intervention.JMIR Form Res. 2021 May 27;5(5):e24417. doi: 10.2196/24417. JMIR Form Res. 2021. PMID: 34042595 Free PMC article.
-
Impact of receiving recorded mental health recovery narratives on quality of life in people experiencing psychosis, people experiencing other mental health problems and for informal carers: Narrative Experiences Online (NEON) study protocol for three randomised controlled trials.Trials. 2020 Jul 20;21(1):661. doi: 10.1186/s13063-020-04428-6. Trials. 2020. PMID: 32690105 Free PMC article.
-
The Implementation of Recommender Systems for Mental Health Recovery Narratives: Evaluation of Use and Performance.JMIR Ment Health. 2024 Mar 29;11:e45754. doi: 10.2196/45754. JMIR Ment Health. 2024. PMID: 38551630 Free PMC article.
-
Curation of Mental Health Recovery Narrative Collections: Systematic Review and Qualitative Synthesis.JMIR Ment Health. 2019 Oct 4;6(10):e14233. doi: 10.2196/14233. JMIR Ment Health. 2019. PMID: 31588912 Free PMC article. Review.
-
Uses and Misuses of Recorded Mental Health Lived Experience Narratives in Healthcare and Community Settings: Systematic Review.Schizophr Bull. 2022 Jan 21;48(1):134-144. doi: 10.1093/schbul/sbab097. Schizophr Bull. 2022. PMID: 34423840 Free PMC article.
Cited by
-
Effectiveness and cost-effectiveness of online recorded recovery narratives in improving quality of life for people with psychosis experience (NEON Trial): a pragmatic randomised controlled trial.Lancet Reg Health Eur. 2024 Oct 23;47:101101. doi: 10.1016/j.lanepe.2024.101101. eCollection 2024 Dec. Lancet Reg Health Eur. 2024. PMID: 39507771 Free PMC article.
References
-
- Smith R. Stop Paddling, Start Sailing: A Journey and Some Ideas. Baltimore: PublishAmerica; (2004).
-
- Llewellyn-Beardsley J. “Not the Story You Want,I’m Sure”: Mental Health Recovery and the Narratives of People from Marginalised Communities. Nottingham: University of Nottingham; (2023).
LinkOut - more resources
Full Text Sources