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

Abstract

Background: Mental health recovery narratives have been defined as first-person lived experience accounts of recovery from mental health problems which refer to events or actions over a period of time and which include elements of adversity or struggle, and also self-defined strengths, successes or survival. They are readily available in invariant recorded form, including text, audio or video. Previous studies have provided evidence that receiving recorded recovery narratives can provide benefits to recipients. This protocol describes three pragmatic trials that will be conducted by the Narrative Experiences Online (NEON) study using the NEON Intervention, a web application that delivers recorded recovery narratives to its users. The aim of the NEON Trial is to understand whether receiving online recorded recovery narratives through the NEON Intervention benefits people with experience of psychosis. The aim of the NEON-O and NEON-C trials is to evaluate the feasibility of conducting a definitive trial on the use of the NEON Intervention with people experiencing nonpsychosis mental health problems and those who care for others experiencing mental health problems respectively.

Opportunities, Enablers, and Barriers to the Use of Recorded Recovery Narratives in Clinical Settings

“…Therefore, whilst areas may be identified as potential "barriers" by a particular group (in this case mental health workers), with reference to how another group might respond (in this case service users), care should be taken to interrogate whether there is evidence to the contrary, or whether a contrasting viewpoint might be expressed by service users. The NEON Trial has sought input from service users (30) to ensure that their own perceptions of barriers, opportunities and facilitators are also sought and considered alongside input from mental health workers.…”

“…Approaches which the wider NEON study is taking to address this concern include careful consideration of ethical issues to ensure our use of RRNs is consistent with the narrator's consent (61), active engagement with individuals and groups from marginalized communities specifically including people who either do not use services or have problematic relationships with services (62) to invite them to donate their narrative [www. researchintorecovery.com/donateastory], decision-making about inclusion of RRNs being made by a group whose majority membership is people with lived experience to reduce the likelihood of only pro-system RRNs being included (30), and characterization of narratives using a standardized instrument (63) which captures the full range of RRNs, including those in which the narrator explicitly rejects the concept of recovery, which allows targeted approaches to improve the diversity in the RRN collection.…”

“…The aim of NEON is to investigate whether accessing RRNs delivered online can improve quality of life for people affected by mental health problems. NEON has developed an online intervention in the form of a recommender system that matches recovery narratives to people with experience of mental health problems (30). NEON has adopted a two-armed approach to preparing for the implementation of this intervention in future healthcare practice.…”

Recorded Mental Health Recovery Narratives as a Resource for People Affected by Mental Health Problems: Development of the Narrative Experiences Online (NEON) Intervention (Preprint)

“…3. With less strong evidence, recovery narratives may be helpful for informal carers, that is, family or friends of people with mental health problems, both for supporting their well-being and informing their understanding of the experiences of the person they care for. The feasibility of using the NEON Intervention with informal carers will be evaluated in the NEON-C Trial [27] (ISRCTN76355273).…”

Living a Meaningful Life While Struggling with Mental Health: Challenging Aspects Regarding Personal Recovery Encountered in the Mental Health System

“…It is a question about encouraging and developing the ability of the employees to hope, be creative, caring for and showing compassion, be realistic and to develop resistance based on life stories and individual reasons for psychological challenges. What is required is developing an awareness to our lifeworld, which leads to the formative education of competent and wise human beings who are in possession of sensitivity and understanding [19,72,73]. The personal qualities of health professionals are important to develop based on experiences in clinical settings that determine both what sensitivities and respective insensitivities we will have access to in dealing with the potential meanings we encounter.…”