| 總結: | Background Personal narratives describing recovery from mental health problems are widely available to the public. We developed theory on the characteristics and impact of recovery narratives, developed curation procedures for the NEON Collection of 659 recovery narratives and developed and evaluated the NEON Intervention, a theory-informed web application providing access to the NEON Collection. Objectives To evaluate the effectiveness and cost-effectiveness of the NEON Intervention as compared to usual care and whether this varies by prior health service usage. Design Three pragmatic parallel-group randomised controlled trials of the NEON Intervention. Intervention arm participants received immediate access. Control arm participants received access after a 52-week follow-up. The effectiveness analysis was a linear regression model of outcome at 52 weeks. The cost-effectiveness analysis compared the incremental cost-effectiveness ratio to the £20,000–30,000 threshold defined in the National Institute for Health and Care Excellence reference case. All analyses were intention-to-treat and baseline-adjusted, with multiple imputation for missing data. Setting England. Participants All trials recruited people who were aged 18+ years, resident in England, capable of accessing or being supported to access the internet, able to understand written and spoken English and capable of providing online informed consent. NEON Trial participants also had experience of mental health-related distress in the last 6 months, and psychosis in the previous 5 years. NEON-O (i.e. non-psychosis) Trial participants also had experience of mental health-related distress in the last 6 months, but with no psychosis in the previous 5 years. People identifying as informal carers for people affected by mental health problems but not eligible for the NEON Trial or NEON-O Trial were recruited to the NEON-C feasibility trial. All inclusion criteria were self-rated. Recruitment was from March 2020 to March 2021, through public communications by the central study team, and the work of clinical support officers at 11 secondary care research sites. Interventions The NEON Intervention has four narrative access mechanisms: theory-informed algorithmic recommendation, random selection, self-selection by narrative category and return to impactful narratives. Participants used the NEON Intervention as much as they wished. Main outcome measures Primary outcome: quality of life (Manchester Short Assessment). Secondary outcomes: distress, hope, self-efficacy, meaning in life and health status. Results For the NEON-O (i.e. non-psychosis) Trial, we found a significant baseline-adjusted difference of 0.13 (95% confidence interval 0.01 to 0.26, p = 0.041) in the Manchester Short Assessment score between intervention and control, and a significant baseline-adjusted difference of 0.22 (95% confidence interval 0.05 to 0.40, p = 0.014) in the presence subscale of the Meaning in Life Questionnaire. The incremental cost-effectiveness ratio was £12,526 per quality-adjusted life-year, lower than a threshold of £30,000 per quality-adjusted life-year used for health service commissioning in England. For participants who had used specialist mental health services at baseline, the intervention appeared to reduce cost, although confidence intervals were wide and results were not statistically significant (–£98, 95% credible interval –£606 to £309). It also improved quality-adjusted life-years (0.0165, 95% credible interval 0.0057 to 0.0273) per participant. Hence, for this subgroup of participants, it dominated usual care. For the NEON Trial, no significant baseline-adjusted differences in outcome were found. An incremental cost-effectiveness ratio of £110,501 was found for the NEON Intervention. A subgroup analysis provided preliminary evidence for greater cost-effectiveness for current mental health service users, with an incremental cost-effectiveness ratio of £35,013. The NEON-C Trial showed acceptability and feasibility for informal carers. It recommended integration of carer narratives and creation of an online carer community. Limitations Participants were recruited during a period in which movement and social interaction were widely affected by the COVID-19 pandemic, with the potential to influence generalisability. For the NEON-O Trial, we had an unrepresentative proportion of female-gendered participants (79.3%). Therefore, our NEON-O Trial findings cannot be generalised. Conclusions This research programme has shown promising findings from the testing of the NEON Intervention. There is further research to do before implementation can be suggested. Future work The NEON Intervention should be evaluated through a randomised controlled trial with people experiencing psychosis and using mental health services. The NEON Intervention should be refined to suit the needs of carers and then evaluated through a randomised controlled trial. The NEON-O Trial should be repeated with narrower mental health populations (e.g. mood disorders, eating disorders) to refine knowledge on effectiveness and cost-effectiveness. This may include refining the narrative collection used with these populations. If the NEON Intervention is implemented on a larger scale for people with non-psychosis mental health problems, then studies should be conducted to monitor benefits, continuously assess safety and documentation implementation processes. Future studies should consider alternative forms for presenting recovery narratives, including through multilanguage or multiculture support, and addressing digital exclusion by providing access through widely available technologies, such as smartphones and text messaging. Longitudinal designs are needed to document the short-term, medium-term and long-term impacts of recovery narratives. Trial registration This trial is registered as NEON Trial ISRCTN11152837, NEON-O Trial ISRCTN63197153 and NEON-C Trial ISRCTN76355273. Funding This award was funded by the National Institute for Health and Care Research (NIHR) Programme Grants for Applied Research programme (NIHR award ref.: RP-PG-0615-20016) and is published in full in Programme Grants for Applied Research; Vol. 13, No. 9. See the NIHR Funding and Awards website for further award information.
Plain language summary People often share their experiences of mental health problems and recovery, for example, by publishing autobiographies or online videos. Personal accounts of mental health recovery are therefore widely available. We call these accounts ‘recovery narratives’. Individuals living with mental health problems have described how recovery narratives from others can be helpful. Similarly, healthcare professionals have described how people using mental health services can benefit from recovery narratives. However, we do not know enough about how recovery narratives have an impact on people with mental health problems. In the NEON study, we created a database of 659 recovery narratives. This included working with international collections of recovery narratives to gain consent to use these narratives, including OC87 Recovery Diaries (United States of America), Here to Help (Canada) and with a broad range of United Kingdom-based individuals and collections. We then created the NEON Intervention, an online web application to give access to these narratives. The design of the NEON Intervention was based on studies we conducted to find out how recovery narratives make an impact. We included safety features, such as warnings about potentially distressing forms of content. We then evaluated the NEON Intervention in two studies involving 1762 people with mental health problems. The NEON Trial included only people who had experienced psychosis in the previous 5 years, and the NEON-O (i.e. non-psychosis) Trial included people with any other type of mental health problem, such as depression or anxiety. In the NEON-O Trial, we found that the NEON Intervention improved people’s quality of life and their perception that their life has meaning. In the NEON Trial, we did not find a benefit for everyone, but we did find some evidence that people with psychosis who are currently using mental health services may benefit.
Scientific summary Background Personal narratives describing recovery from mental health problems are widely available to the public, even for the most stigmatised mental health problems. The Narrative Experiences Online (NEON) study was funded by the National Institute for Health and Care Research (NIHR) from 2017 to 2023. It used a mixed-methods approach to evaluate whether having online access to recorded recovery narratives is helpful for people affected by mental health problems. Objectives To describe the characteristics of recovery narratives. To describe the benefits and harms of receiving recovery narratives. To describe the role of curators in creating collections of recovery narratives. To develop a curated collection of recovery narratives. To develop a web-based intervention providing access to this collection. To evaluate the intervention with people experiencing mental health problems. To evaluate the feasibility and acceptability of a trial with informal carers. To evaluate opportunities and challenge for clinical implementation. Objective 1: characteristics of recovery narratives Methods We developed the Recovery Narratives Conceptual Framework (RNCF). Our work began with a systematic review of empirical research studies (PROSPERO CRD42018090188). Recovery narratives were 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 both adversity/struggle and of self-defined strengths/successes/survival. Recovery narrative characteristics described in included papers were synthesised. We conducted 80 narrative interviews with participants under-represented in recovery narratives research. Our topic guide invited participants to share their recovery narrative, with questions on factors influencing its telling. We validated and extended the RNCF by conducting a structural narrative analysis. We then documented influences on the telling of narratives through a reflexive thematic analysis and a performative narrative analysis. Results The RNCF was organised into nine dimensions: genre, positioning relative to mental health services, emotional tone, relationship with recovery, trajectory, use of turning points, narrative sections, protagonists and use of metaphors. Our reflexive thematic analysis found questions of power were central to how collected narratives were told. Our performative narrative analysis documented the influence of the research process on participant narratives. Objective 2: benefits and harms of receiving recovery narratives Methods We developed the NEON Impact Model. Our work began with a systematic review (PROSPERO CRD42018090923) to identify forms and processes of impact. Searches used electronic databases (n = 9), reference tracking, hand-searching of selected journals (n = 2), grey literature searching and expert consultation (n = 7). Findings were validated and extended through thematic analysis of our narrative interviews. In an experimental study, mental health service users (SUs) were shown recovery narratives, quantified immediate impact and described how it occurred. We modelled the causal chain through a qualitative interview analysis and integrated all findings to produce the NEON Impact Model. In a clinical study, mental health SUs accessed narratives through an intervention prototype for a month and quantified immediate impact. We identified predictors of immediate impact in the experimental and clinical studies using a multilevel mixed-effects model. Results The NEON Impact Model characterises the positive impact of receiving recorded mental health recovery narratives on health-related quality of life (QoL) through improved hope, connectedness, empowerment, greater meaning in life, positive emotional release, emulation of helpful narrative behaviours, initiation of help-seeking behaviours. The model also describes harmful outcomes which reduce QoL: inadequacy, disconnection, pessimism, burden, negative emotional release, emulation of harmful narrator behaviours and despair. Mechanisms of connection were (1) comparison with the narrative/narrator, (2) learning about other’s experiences and (3) experiencing empathy. Recovery status, gender and ethnicity were moderating narrative characteristics; gender and ethnicity were moderating recipient characteristics; and matches between characteristics were shown to have significant effects. Objective 3: the role of curators in creating collections of recovery narratives Methods We developed a typology of curatorial decisions for recovery narrative collections. Our work began with a systematic review (PROSPERO CRD42018086997). Empirical studies were identified from bibliographic databases (n = 13), journals indexes (n = 3) and grey literature repositories (n = 4). Documents describing decisions were identified from book prefaces (n = 53) and web-based narrative collections (n = 50). We conducted a qualitative evidence synthesis, extended through an interview study with curators. These studies raised concerns about recovery narratives misuse, so we conducted a further systematic review (PROSPERO CRD42021229458). Documents were identified from bibliographic databases (n = 11), from subject-specific websites and activist literature, and through citation tracking and expert consultation. Uses and misuses of recovery narratives were synthesised. Results Our VOICES (Values and motivations; Organisation; Inclusion and exclusion; Control and collaboration; Ethics and legal; Safety and well-being) typology identifies six categories of curatorial decision: values and motivations, organisation, inclusion and exclusion, control and collaboration, ethics and legal and safety and well-being. Collection organiser motivations included fighting stigma, educating about recovery, critiquing psychiatry, influencing narrative inclusion, content editing, withdrawal rights and anonymisation. Twenty-seven narrative uses were identified in five categories: political, societal, community, service level and individual. Misuses included co-option of narratives, unethical editing practises, coercion of narrators and triggering of distress in recipients. Objective 4: to develop a curated collection of recovery narratives Methods We developed the 77-item Inventory of the Characteristics of Recovery Stories (INCRESE). Four coders rated 95 narratives using INCRESE, to investigate feasibility and acceptability, intercoder reliability using Fleiss’s kappa coefficient (κ) and test–retest reliability using intraclass correlation coefficients (ICCs). We developed a protocol describing principles and procedures for the NEON Collection, with professional and lived experience advice on critical issues, such as inclusion criteria, approaches to anonymisation and narrator withdrawal rights. Procedures were initially iterated through assembling a collection of 100 recovery narratives. As changes ceased, we analysed process documentation to enumerate decisions and rationales. Results The INCRESE items spanned five sections: narrative eligibility, narrative mode, narrator characteristics, narrative characteristics and narrative content. In the reliability assessment, no floor or ceiling effects were found, intercoder reliability ranged from moderate (κ = 0.58) to perfect agreement (κ = 1.00) and test–retest reliability ranged from moderate (ICC = 0.57) to complete agreement (ICC = 1.00). Coder well-being was identified as a support need. We adopted decisions setting a distinctive direction for the NEON Collection, including never editing or anonymising narratives, and allowing narrator updates. Reasons for exclusion included hate speech, graphic descriptions of harmful behaviours or sharing sensitive third-party unpublished personal information. We assembled 659 narratives from existing collections and through donations, all with narrator/curator consent and characterised using INCRESE. Objective 5: to develop a web-based intervention using the Narrative Experiences Online Collection Methods The NEON proposal specified a web-based intervention with four narrative access routes: algorithmic recommendation, random selection, category-based browsing and return to previous narratives. To operationalise this, we selected a hybrid recommendation approach that combined narrative predictions from one content-based filtering algorithm [k-Nearest Neighbour (kNN)] and two collaborative filtering algorithms [Singular Value Decomposition (SVD), SVD++], used INCRESE items as categories and identified harm-minimisation strategies with lived experience and academic advice. In our feasibility evaluation, mental health SUs received access to the NEON Intervention for 1 month, with entry and exit interviews. Candidate improvements were organised by NEON Intervention feature and implementation decisions made. Results We adopted seven harm minimisation strategies: (1) describing known harms on the participant information sheet; (2) asking participants for preferred distress management strategies; (3) providing a distress page integrating reminders of preferred strategies, self-management resources and signposting to services; (4) the inclusion of researcher-rated content warnings for narratives; (5) enabling the proactive blocking of narratives by content warning category; (6) enabling the reactive blocking of individual narratives; and (7) a button for rapid exit. Feasibility study feedback was broadly positive. Small changes were made, for example, providing clarity that trial outcome data were not used by the recommender system. Response rates to five online questions on immediate narrative impact were low, so they were adjusted, with only one question on hopefulness remaining mandatory. Mean number of narratives accessed was 9.2, lower than anticipated, so we added strategies to enhance engagement. Objective 6: to evaluate the intervention with people experiencing mental health problems Methods We conducted two definitive trials of the NEON Intervention to evaluate effectiveness and cost-effectiveness for people with self-identified mental health problems. The NEON Trial (n = 739, ISRCTN11152837) included people with recent psychosis experience. The NEON for Other (i.e. non-psychosis mental health) (NEON-O) Trial (n = 1023, ISRCTN63197153) included people with mental health problems but no recent psychosis experience. All trial procedures were conducted online. Recruitment opened in March 2020 and closed in March 2021. Participants were recruited nationally in England by the central study team and 11 research sites. Participants completed baseline online questionnaires, to collect demographic, clinical outcome and health service use data, and were randomised to receive immediate or 52-week delayed access to the NEON Intervention. All participants completed the same online questionnaires at 52-week follow-up. The primary outcome was QoL measured using the Manchester Short Assessment (MANSA). Secondary outcomes were distress, hope, self-efficacy, meaning in life and health status. The primary analysis of effectiveness was a linear regression model of outcome at a 52-week follow-up adjusting for baseline score, with multiple imputation for missing data. Cost-effectiveness was investigated from the perspective of the NHS in England, rather than the ‘NHS and personal social services’ perspective as recommended by National Institute for Health and Care Excellence reference case. We estimated an incremental cost-effectiveness ratio (ICER), which was compared to established thresholds of £20,000 and £30,000. UK-based unit costs were used to estimate health services resource allocation, NEON Intervention delivery costs were estimated from study records and quality-adjusted life-years (QALYs) were calculated from health status data. Baseline data analysis found significant demographic and clinical differences between participants who had used and not used specialist mental health services, so we examined effectiveness and cost-effectiveness for subgroups defined on service use history. Process evaluation interviews were conducted with participants in the NEON Trial (n = 30) and the NEON-O Trial (n = 24) and thematically analysed. To evaluate our algorithmic recommendation approach system, we used narrative request and feedback data to compare the accuracy, precision, diversity, coverage and unfairness of the three filtering algorithms. Results For the NEON-O Trial, we found a significant baseline-adjusted difference of 0.13 [95% confidence interval (CI) 0.01 to 0.26, p = 0.041] in the MANSA score between intervention and control, and a significant baseline-adjusted difference of 0.22 (95% CI 0.05 to 0.40, p = 0.014) on the ‘presence of meaning’ subscale of the Meaning in Life Questionnaire. We found an incremental gain of 0.0142 QALYs [95% credible interval (CrI) 0.0059 to 0.0226] and a £178 incremental increase in cost (95% CrI –£154 to £455) per participant, generating an ICER of £12,526 per QALY. For participants who had used specialist mental health services at baseline, the intervention reduced cost (–£98, 95% CrI –£606 to £309) and improved QALYs (0.0165, 95% CrI 0.0057 to 0.0273) per participant, and hence dominated usual care (UC). For the NEON Trial, no significant baseline-adjusted differences in outcome were found, and the ICER (£110,501) was above the threshold for cost-effectiveness. Our findings do not support the use of the NEON Intervention as a population-level intervention for all people with psychosis experience. A subgroup analysis provided preliminary evidence that the NEON Intervention was more cost-effective for current mental health SUs, with an estimated ICER of £35,013. Further evaluation of the NEON Intervention with people experiencing psychosis and using mental health services is indicated. Our process evaluation documented how the NEON Intervention was integrated into daily life, and perceptions of the NEON Intervention influenced usage. Our selected algorithms performed better than random choice of narrative, and our analysis provided preliminary evidence for an association between clinical population and recommendation performance. Objective 7: to evaluate the feasibility and acceptability of a trial with informal carers Methods The NEON for Carers (NEON-C) feasibility trial (n = 54, ISRCTN76355273) used the same integrated web application as our definitive trials to evaluate the feasibility of a definitive trial with informal carers for people experiencing mental health problems. Procedures were as for our definitive trials. We conducted process evaluation interviews. Our analysis identified parameters relevant to definitive trial planning and identified necessary NEON Intervention modifications for carer relevance. Results We found a small effect on hope (Cohen’s d = 0.14), a moderate effect on the presence of meaning in life (Cohen’s d = 0.31) and a moderate effect on the search for meaning in life (Cohen’s d = −0.33). These are candidate primary outcomes for a definitive trial. Modifications included the inclusion of carer perspective narratives, signposting to carer support services and consideration of privacy issues, for example, around the identifiability of carers in narratives accessed by people they care for. Objective 8: to evaluate opportunities and challenges for clinical implementation Methods We conducted three phases of focus groups with mental health clinicians, investigating current and possible uses of recorded recovery narratives in clinical practice (n = 25), specific clinical perspectives on the NEON Intervention (n = 15) and clinical education uses of recovery narrative (n = 12). Thematic analysis was conducted. Results Recorded recovery narratives can reinforce the effectiveness of clinical practices, including by reducing communication barriers. They might extend clinical practice, including as an alternative when clients have become ‘stuck’. Potential barriers included patient capacity to use online resources, accessibility of language, risk considerations (content triggering distress, staff skills to respond), trust in the intervention, the cost of provision and the capability of NHS information and technology systems to enable access. There were educational opportunities to enable access to lived experience perspectives, to train non-clinical staff and to facilitate attitudinal change. Recommendations for research The benefits of deploying the NEON Intervention on a larger scale as a population-level low-intensity self-management intervention for people with non-psychosis mental health problems should be evaluated. An evaluation of the NEON Intervention with current mental health SUs with psychosis is justified by the evidence. The NEON-O Trial should be repeated with narrower populations, to develop more specific knowledge on impact. Future studies should consider alternative forms for presenting recovery narratives, including through multilanguage or multiculture support, and addressing digital exclusion by providing access through widely available technologies, such as smartphones and text messaging. Longitudinal designs are needed to document the short-term, medium-term and long-term impacts of recovery narratives. Implications for health care This research programme has shown promising findings from the testing of the NEON Intervention. However, in our economic analysis, differences in QALYs were either small or not statistically significant. There is further research to do before implementation can be suggested. Trial registration This trial is registered as NEON Trial ISRCTN11152837, NEON-O Trial ISRCTN63197153 and NEON-C Trial ISRCTN76355273. Funding This award was funded by the National Institute for Health and Care Research (NIHR) Programme Grants for Applied Research programme (NIHR award ref.: RP-PG-0615-20016) and is published in full in Programme Grants for Applied Research; Vol. 13, No. 9. See the NIHR Funding and Awards website for further award information.
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