JMIR Publications

ABSTRACT

Background:

Social media platforms have enabled the sharing of digital narratives about health concerns on a substantial scale. Some health interventions have integrated health narratives, for example to give voice to under-represented populations. Narratives describing recovery from health problems have been a specific focus of research, including those presented in “recorded” (e.g. invariant) form. No clinical trial has been conducted of an online intervention providing access to recorded recovery narratives.

Objective:

To present knowledge developed during the development of the NEON Intervention, an online intervention which recommends items from the NEON Collection of recovery narratives.

Methods:

Five inter-linked studies were conducted. Study 1 synthesised three previous studies to produce the NEON Impact Model characterising the causal chain from accessing recorded recovery narratives to health-related outcomes. Study 2 developed and implemented curation principles for the NEON Collection, through iterative consultation with the NEON Lived Experience Advisory Panel (LEAP) (n=11) and the curation of a preliminary collection of 100 recovery narratives. Study 3 validated questions intended to collect feedback on the immediate impact of narratives used in the intervention through rating the impact of randomly-presented narratives by current mental health service users (n=40). Study 4 evaluated the usability and acceptability of a prototype of the NEON Intervention through interview and deployment studies with current mental health service users (n=25). Study 5 identified and implemented harm minimisation strategies through four rounds of expert consultation with the NEON International Advisory Board (n=7) and the NEON LEAP.

Results:

The NEON Impact Model developed in study 1 identifies moderators (recipient, context), mechanisms of connection (reflection, comparison, learning, empathy), processes (identification of change from narrative structure/content, internalisation of observed change) and outcomes (helpful, unhelpful). Study 2 identified 22 curation principles, including a mission to build a large and heterogeneous collection to maximise opportunities for connection. Study 3 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, and that order of presentation did not predict narrative feedback. Study 4 identified amendments to online trial procedures and to the NEON Intervention. Participants accessed some narratives multiple times, usage reduced over the four week period, and narrative feedback was provided for 105 (32%) of 330 narrative accesses. Study 5 identified seven harm minimisation strategies, including content warnings, proactive and reactive blocking of narratives, and providing resources for self-management of emotional distress.

Conclusions:

Recorded mental health recovery narratives can be integrated into online interventions, and it is feasible to conduct an evaluation of the NEON Intervention in a clinical trial. The mixed-methods design used to develop the NEON Intervention will also guide the extension of NEON to other clinical populations, the design of other online mental health interventions, and the development of narrative-based interventions in mental health. Clinical Trial: 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.