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.