Title: Personal experience as a recovery resource in psychosis: Narrative Experiences ONline (NEON) Programme
Funder: Department of Health and Social Care

Abstract: Aims and Objectives Recovery narratives involve people describing the understanding they have developed about their mental health problems and their recovery. The aim of this study is to use recorded recovery narratives to support the recovery of people experiencing psychosis. The objectives are: 1. To collect recovery narratives from four under-researched groups (n=120) 2. To develop and validate (n=20) a conceptual framework characterising recovery narratives and their benefits to others 3. To develop (n=40), refine (n=30) and optimise (n=81) an intervention using recorded narratives to benefit people experiencing psychosis 4. To conduct a definitive randomised controlled trial to assess the effectiveness and cost-effectiveness of the intervention on current mental health service users experiencing psychosis from across England (n=683) Hypothesis: participants receiving the narratives intervention will have improved quality of life at one-year follow-up compared with those not receiving the intervention. 5. To develop an online intervention for mental health professionals to increase hopefulness in staff about recovery. Background and rationale Psychosis is burdensome to individuals and their families, and costly to society (see Importance to the NHS section). People experiencing psychosis benefit from meeting others who share their narrative of recovery5, and recorded narratives provide a low-cost approach to increasing access. This programme builds on a previous Programme Grant (RP-PG-0707-10040) on recovery. Research plan The scientific framework is the 2015 MRC Framework for Complex Interventions6. MRC Development Stage Work Package 1 addresses knowledge gaps relating to four important under-researched groups: experiencing psychosis and not using mental health services; mental health service users from non-majority groups; people who are under-served by mental health services; and peer workers. Semi-structured interviews (n=120) will explore how their narratives may benefit others. Work Package 2 synthesises existing research and Work Package 1 findings to develop a conceptual framework characterising the defining features of recovery narratives and the mechanisms by which they benefit others. After further refinement through semi-structured interviews with service users (n=20), this forms the basis for Work Packages 3 and 4. MRC Feasibility/Piloting and Evaluation Stages Work Package 3 develops and evaluates the NEON intervention, an online intervention using recorded recovery narratives for mental health service users experiencing psychosis. English-language narratives will be collated from multiple sources. Guided by Work Package 2, a preliminary matching approach for selecting the most helpful narrative(s) for individuals will be developed, using the Narratives of Recovery Scale (NORSE) to characterise narratives and ratings of hope-promotion from 40 service users to characterise their impact. As further participants use the intervention, the machine-learning approach will refine the matching algorithm. Informed by workshops with 30 healthcare professionals, an online intervention will be developed to match individuals to narratives. Feasibility of trial procedures and engagement approaches will be tested with 30 mental health service users, and clinical relevance maximised through focus groups with health professionals (n=24). A definitive randomised controlled trial with an internal pilot will then be conducted across England, involving 683 mental health service users with a psychosis diagnosis, randomised to either usual care or usual care plus NEON. The intervention will comprise an internet-based experience of recorded recovery narratives, with the narrative chosen using the matching algorithm (recommended approach), by the service user, or randomly presented. The primary outcome is quality of life measure with Manchester Short Assessment. Outcome evaluation will use intention-to-treat analysis of the primary outcome at one week, three months and one year (primary end-point) after baseline. Economic evaluation will estimate the impact on service costs, and assess relative cost-effectiveness compared with current practice. Process evaluation will investigate the relationship between implementation, mechanism and context, including mechanisms of change and interpretation of outcome. Work Package 4 will address the therapeutic pessimism of some health workers. It will develop and undertake a preliminary evaluation of a new online professional development intervention. The intervention will involve staff viewing narratives showing positive role models of recovery, selected using theory developed in Work Package 2 from narratives collated in Work Package 3. Projected outputs & dissemination plans Outputs will include a sound theoretical basis for this and other narratives research, a new and rigorously evaluated intervention for service users, a new intervention for workforce development with preliminary evaluation, and a library of quality-assured online narratives with substantial potential for further applications and evaluations. The extensive health technology assessment will provide commissioners with essential information to support local budget impact analysis and commissioning. MRC Implementation stage Work Package 5 uses a range of researcher-led and PPI-led approaches to dissemination, including knowledge transfer events, co-production of a summary of findings, implementation within England through linkage with national transformation programmes, and the development of practical guides. The online intervention will be made freely available. Benefits to patients and the NHS A low-cost, low-intensity free-to-access self-management intervention for patients experiencing psychosis, which will benefit patients and inform judicious use of NHS resources.

Lay abstract: Aims NEON (Narrative Experiences ONline) looks at whether hearing online stories of personal recovery told by peers improves quality of life for people with psychosis. It also looks at whether these narratives can improve the way mental health workers support this client group. If found effective, NEON could offer a low cost approach that would be delivered nationally, benefitting many people who experience psychosis across the country and saving the NHS money. Background UK government policy supports recovery orientated mental health practice. Psychosis is a mental health problem that affects about 4 in 1000 people each year, with potential for serious long term impact on relationships, employment, lifestyle and personal identity. Stigma can hinder help-seeking and cause despair for the person experiencing psychosis and staff. These combined issues can make it hard for people to believe personal recovery is possible, understood as living a satisfying, hopeful and contributing life even with the limitations caused by illness. Stories from peers, about their struggles and positive accounts, are known to be hope-inspiring but access is limited. Too many people have never heard another person s experience of psychosis told in their own words. NEON fills this gap by widening access to online recovery stories, in order to build on the capacity of people with psychosis to offer hope to others. Approach NEON will follow ethical research principles and draw on a range of methods recommended by the Medical Research Council. The study has several stages: 1. Creation of online collection of different people s experiences of living with psychosis and their personal recovery. 2. A review of current evidence to find out which elements of existing and new recovery accounts may best help others. 3. Development of an online self-management tool which will match the most hope-promoting narratives to recipient s needs and experiences. We will also assess the practicalities and safety of carrying out a large-scale evaluation. 4. Development of an online training intervention for mental health professionals to increase expectations that recovery is likely for the people with psychosis. 5. The main component of the research project will be a large-scale evaluation. We will recruit over 680 people with psychosis nationally, to test whether the experience of online recovery accounts, compared to no experience, leads to increased quality of life one year later. Patient and Public Involvement People with lived experience are central to the design and delivery of NEON; 34 recommendations from the NEON Lived Experience Advisory Panel are included in this application. Active roles are planned throughout the study, including employment of a peer researcher. Dissemination We will promote our results and learning across academic, practitioner and service user networks in partnership with all members of the NEON team.

Research activity codes: 7.3 MANAGEMENT AND DECISION MAKING;7.1 INDIVIDUAL CARE NEEDS
Health categories: MENTAL HEALTH