The Implementation of Recommender Systems for Mental Health Recovery Narratives: Evaluation of Use and Performance.

BACKGROUND: Recommender systems help narrow down a large range of items to a smaller, personalized set. NarraGive is a first-in-field hybrid recommender system for mental health recovery narratives, recommending narratives based on their content and narrator characteristics (using content-based filtering) and on narratives beneficially impacting other similar users (using collaborative filtering). NarraGive is integrated into the Narrative Experiences Online (NEON) intervention, a web application providing access to the NEON Collection of recovery narratives. OBJECTIVE: This study aims to analyze the 3 recommender system algorithms used in NarraGive to inform future interventions using recommender systems for lived experience narratives. METHODS: Using a recently published framework for evaluating recommender systems to structure the analysis, we compared the content-based filtering algorithm and collaborative filtering algorithms by evaluating the accuracy (how close the predicted ratings are to the true ratings), precision (the proportion of the recommended narratives that are relevant), diversity (how diverse the recommended narratives are), coverage (the proportion of all available narratives that can be recommended), and unfairness (whether the algorithms produce less accurate predictions for disadvantaged participants) across gender and ethnicity. We used data from all participants in 2 parallel-group, waitlist control clinical trials of the NEON intervention (NEON trial: N=739; NEON for other [eg, nonpsychosis] mental health problems [NEON-O] trial: N=1023). Both trials included people with self-reported mental health problems who had and had not used statutory mental health services. In addition, NEON trial participants had experienced self-reported psychosis in the previous 5 years. Our evaluation used a database of Likert-scale narrative ratings provided by trial participants in response to validated narrative feedback questions. RESULTS: Participants from the NEON and NEON-O trials provided 2288 and 1896 narrative ratings, respectively. Each rated narrative had a median of 3 ratings and 2 ratings, respectively. For the NEON trial, the content-based filtering algorithm performed better for coverage; the collaborative filtering algorithms performed better for accuracy, diversity, and unfairness across both gender and ethnicity; and neither algorithm performed better for precision. For the NEON-O trial, the content-based filtering algorithm did not perform better on any metric; the collaborative filtering algorithms performed better on accuracy and unfairness across both gender and ethnicity; and neither algorithm performed better for precision, diversity, or coverage. CONCLUSIONS: Clinical population may be associated with recommender system performance. Recommender systems are susceptible to a wide range of undesirable biases. Approaches to mitigating these include providing enough initial data for the recommender system (to prevent overfitting), ensuring that items can be accessed outside the recommender system (to prevent a feedback loop between accessed items and recommended items), and encouraging participants to provide feedback on every narrative they interact with (to prevent participants from only providing feedback when they have strong opinions).

Perception and appropriation of a web-based recovery narratives intervention: qualitative interview study.

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.

Effectiveness and cost-effectiveness of online recorded recovery narratives in improving quality of life for people with non-psychotic mental health problems: a pragmatic randomized controlled trial.

Narratives describing first-hand experiences of recovery from mental health problems are widely available. Emerging evidence suggests that engaging with mental health recovery narratives can benefit people experiencing mental health problems, but no randomized controlled trial has been conducted as yet. We developed the Narrative Experiences Online (NEON) Intervention, a web application providing self-guided and recommender systems access to a collection of recorded mental health recovery narratives (n=659). We investigated whether NEON Intervention access benefited adults experiencing non-psychotic mental health problems by conducting a pragmatic parallel-group randomized trial, with usual care as control condition. The primary endpoint was quality of life at week 52 assessed by the Manchester Short Assessment (MANSA). Secondary outcomes were psychological distress, hope, self-efficacy, and meaning in life at week 52. Between March 9, 2020 and March 26, 2021, we recruited 1,023 participants from across England (the target based on power analysis was 994), of whom 827 (80.8%) identified as White British, 811 (79.3%) were female, 586 (57.3%) were employed, and 272 (26.6%) were unemployed. Their mean age was 38.4±13.6 years. Mood and/or anxiety disorders (N=626, 61.2%) and stress-related disorders (N=152, 14.9%) were the most common mental health problems. At week 52, our intention-to-treat analysis found a significant baseline-adjusted difference of 0.13 (95% CI: 0.01-0.26, p=0.041) in the MANSA score between the intervention and control groups, corresponding to a mean change of 1.56 scale points per participant, which indicates that the intervention increased quality of life. We also detected a significant baseline-adjusted difference of 0.22 (95% CI: 0.05-0.40, p=0.014) between the groups in the score on the "presence of meaning" subscale of the Meaning in Life Questionnaire, corresponding to a mean change of 1.1 scale points per participant. We found an incremental gain of 0.0142 quality-adjusted life years (QALYs) (95% credible interval: 0.0059 to 0.0226) and a £178 incremental increase in cost (95% credible interval: -£154 to £455) per participant, generating an incremental cost-effectiveness ratio of £12,526 per QALY compared with usual care. This was lower than the £20,000 per QALY threshold used by the National Health Service in England, indicating that the intervention would be a cost-effective use of health service resources. In the subgroup analysis including participants who had used specialist mental health services at baseline, the intervention both reduced cost (-£98, 95% credible interval: -£606 to £309) and improved QALYs (0.0165, 95% credible interval: 0.0057 to 0.0273) per participant as compared to usual care. We conclude that the NEON Intervention is an effective and cost-effective new intervention for people experiencing non-psychotic mental health problems.

"Nothing's changed, baby": How the mental health narratives of people with multiple and complex needs disrupt the recovery framework.

The dominant narrative in mental health policy and practice has shifted in the 21st century from one of chronic ill health to a 'recovery' orientation. Knowledge of recovery is based on narratives of people with lived experience of mental distress. However the narratives of people experiencing structural inequalities are under-represented in recovery research. Meanwhile, uses of recovery narratives have been critiqued by survivor-researchers as a co-option of lived experience to serve neoliberal agendas. To address these twin concerns, we undertook a performative narrative analysis of two 'recovery narratives' of people with multiple and complex needs, analysing their co-construction at immediate/micro and structural/macro levels. We found two contrasting responses to the invitation to tell a recovery story: a narrative of personal lack and a narrative of resistance. We demonstrate through reflexive worked examples how the genre of recovery narrative, focused on personal transformation, may function to occlude structural causes of mental distress and reinforce personal responsibility in the face of unchanging living conditions. We conclude that unacknowledged epistemological assumptions may contribute to co-constructing individualist accounts of recovery. A critical, reflexive approach, together with transparent researcher positionality, is imperative to avoid the epistemic injustice of a decontextualised form of recovery narrative.

Differences Between Online Trial Participants Who Have Used Statutory Mental Health Services and Those Who Have Not: Analysis of Baseline Data From 2 Pragmatic Trials of a Digital Health Intervention.

BACKGROUND: Digital health interventions (DHIs) are an established element of mental health service provision internationally. Regulators have positioned the best practice standard of evidence as an interventional study with a comparator reflective of standard care, often operationalized as a pragmatic trial. DHIs can extend health provision to those not currently using mental health services. Hence, for external validity, trials might openly recruit a mixture of people who have used mental health services and people who have not. Prior research has demonstrated phenomenological differences in mental health experience between these groups. Some differences between service users and nonservice users might influence the change created by DHIs; hence, research should systematically examine these differences to inform intervention development and evaluation work. This paper analyzes baseline data collected in the NEON (Narrative Experiences Online; ie, for people with experience of psychosis) and NEON-O (NEON for other [eg, nonpsychosis] mental health problems) trials. These were pragmatic trials of a DHI that openly recruited people who had used specialist mental health services and those who had not. All participants were experiencing mental health distress. NEON Trial participants had experienced psychosis in the previous 5 years. OBJECTIVE: This study aims to identify differences in baseline sociodemographic and clinical characteristics associated with specialist mental health service use for NEON Trial and NEON-O Trial participants. METHODS: For both trials, hypothesis testing was used to compare baseline sociodemographic and clinical characteristics of participants in the intention-to-treat sample who had used specialist mental health services and those who had not. Bonferroni correction was applied to significance thresholds to account for multiple testing. RESULTS: Significant differences in characteristics were identified in both trials. Compared with nonservice users (124/739, 16.8%), NEON Trial specialist service users (609/739, 82.4%) were more likely to be female (P<.001), older (P<.001), and White British (P<.001), with lower quality of life (P<.001) and lower health status (P=.002). There were differences in geographical distribution (P<.001), employment (P<.001; more unemployment), current mental health problems (P<.001; more psychosis and personality disorders), and recovery status (P<.001; more recovered). Current service users were more likely to be experiencing psychosis than prior service users. Compared with nonservice users (399/1023, 39%), NEON-O Trial specialist service users (614/1023, 60.02%) had differences in employment (P<.001; more unemployment) and current mental health problems (P<.001; more personality disorders), with lower quality of life (P<.001), more distress (P<.001), less hope (P<.001), less empowerment (P<.001), less meaning in life (P<.001), and lower health status (P<.001). CONCLUSIONS: Mental health service use history was associated with numerous differences in baseline characteristics. Investigators should account for service use in work to develop and evaluate interventions for populations with mixed service use histories. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1186/s13063-020-04428-6.

Statistical analysis plans for two randomised controlled trials of the Narrative Experiences Online (NEON) Intervention: impact of receiving recorded mental health recovery narratives on quality of life in people experiencing psychosis (NEON) and people experiencing non-psychosis mental health problems (NEON-O).

BACKGROUND: Mental health recovery narratives are a first-hand account of an individual's recovery from mental health distress, access to narratives can aid recovery. The NEON Intervention is a web-application providing access to a managed collection of narratives. We present the statistical analysis plan for assessing the effectiveness of the NEON Intervention in improving quality of life at 1-year post-randomisation. We pay particular focus on the statistical challenges encountered due to the online nature of this trial. METHODS AND DESIGN: The NEON Intervention is assessed in two trial populations, one for people with experience of psychosis in the last 5 years, and mental health distress in the last six months (NEON Trial) and one for people with experience of non-psychosis mental health problems (NEON-O Trial). Both NEON trials are two-arm randomised controlled superiority trials comparing the effectiveness of the NEON Intervention with usual care. The target sample size is 684 randomised participants for NEON and 994 for NEON-O. Participants were randomised centrally in a 1:1 ratio. RESULTS: The primary outcome is the mean score of subjective items on the Manchester Short Assessment of Quality-of-Life questionnaire (MANSA) at 52 weeks. Secondary outcomes are scores from the Herth Hope Index, Mental Health Confidence Scale, Meaning of Life questionnaire, CORE-10 questionnaire and Euroqol 5-Dimension 5-Level (EQ-5D-5L). CONCLUSION: This manuscript is the statistical analysis plan (SAP) for the NEON trials. Any post hoc analysis, such as those requested by journal reviewers will be clearly labelled as such in the final trial reporting. Trial registration Both trials were prospectively registered. NEON Trial: ISRCTN11152837, registered on 13 August 2018. NEON-O Trial: ISRCTN63197153, registered on 9 January 2020.

Assessing Diversity and Inclusivity is the Next Frontier in Mental Health Recovery Narrative Research and Practice.

Demand for digital health interventions is increasing in many countries. The use of recorded mental health recovery narratives in digital health interventions is becoming more widespread in clinical practice. Mental health recovery narratives are first-person lived experience accounts of recovery from mental health problems, including struggles and successes over time. Helpful impacts of recorded mental health recovery narratives include connectedness with the narrative and validation of experiences. Possible harms include feeling disconnected and excluded from others. Diverse narrative collections from many types of narrators and describing multiple ways to recover are important to maximize the opportunity for service users to benefit through connection and to minimize the likelihood of harm. Mental health clinicians need to know whether narrative collections are sufficiently diverse to recommend to service users. However, no method exists for assessing the diversity and inclusivity of existing or new narrative collections. We argue that assessing diversity and inclusivity is the next frontier in mental health recovery narrative research and practice. This is important, but methodologically and ethically complex. In this viewpoint, we propose and evaluate one diversity and two inclusivity assessment methods. The diversity assessment method involves use of the Simpson Diversity Index. The two inclusivity assessment methods are based on comparator demographic rates and arbitrary thresholds, respectively. These methods were applied to four narrative collections as a case study. Refinements are needed regarding a narrative assessment tool in terms of its practicality and cultural adaptation.

Pragmatic, feasibility randomized controlled trial of a recorded mental health recovery narrative intervention: narrative experiences online intervention for informal carers (NEON-C).

Introduction: Informal carers of people with mental health problems often have unmet support needs. Mental health recovery narratives are increasingly accessible, but their relevance to and effect on informal carers have been minimally investigated. The Narrative Experiences Online (NEON) Intervention is a first-in-field intervention that provides informal carers with access to a diverse collection of recorded mental health recovery narratives. This trial aimed to examine the feasibility and acceptability of the NEON Intervention for informal carers. Methods: This study involved a two-arm feasibility randomized controlled trial. Carers were randomly assigned to receiving versus not receiving the NEON Intervention. The feasibility aspects investigated included the acceptability of the intervention and of randomization, trial processes, engagement rates, recruitment procedures, attrition, sample size estimation, identification of candidate primary and secondary outcomes, and the feasibility of conducting a definitive trial. A qualitative process evaluation was conducted. Findings: A total of 121 carers were eligible, of whom 54 were randomized (intervention: 27, control: 27). Twelve-month follow-up data were available for 36 carers. Carers accessed a mean of 25 narratives over a 12-month period, and the intervention group, compared with the control group, reported a small effect on hope and a moderate effect on the presence of meaning in life. Five modifications were recommended to improve the user experience, applicability, and trial processes. Discussion: The NEON Intervention is feasible and acceptable. Significant refinement of the NEON Intervention and trial processes is required to personalize and ensure applicability to carers. Further feasibility testing is recommended prior to a definitive trial.

Development and delivery cost of digital health technologies for mental health: Application to the Narrative Experiences Online Intervention.

Background: The increasing development and use of digital health interventions requires good quality costing information to inform development and commissioning choices about resource allocation decisions. The Narrative Experiences Online (NEON) Intervention is a web-application that delivers recorded mental health recovery narratives to its users. Two randomized controlled trials are testing the NEON Intervention in people with experience of psychosis (NEON) and people experiencing non-psychosis mental health problems (NEON-O). Aim: This study describes and estimates the cost components and total cost of developing and delivering the NEON Intervention. Materials and methods: Total costs for the NEON Trial (739 participants) and NEON-O Trial (1,024 participants) were estimated by: identifying resource use categories involved in intervention development and delivery; accurate measurement or estimation of resource use; and a valuation of resource use to generate overall costs, using relevant unit costs. Resource use categories were identified through consultation with literature, costing reporting standards and iterative consultation with health researchers involved in NEON Intervention development and delivery. Sensitivity analysis was used to test assumptions made. Results: The total cost of developing the NEON Intervention was £182,851. The largest cost components were software development (27%); Lived Experience Advisory Panel workshops (23%); coding the narratives (9%); and researchers' time to source narratives (9%). The total cost of NEON Intervention delivery during the NEON Trial was £118,663 (£349 per NEON Intervention user). In the NEON-O Trial, the total delivery cost of the NEON Intervention was £123,444 (£241 per NEON Intervention user). The largest cost components include updating the narrative collection (50%); advertising (19%); administration (14%); and software maintenance (11%). Uncertainty in the cost of administration had the largest effect on delivery cost estimates. Conclusion: Our work shows that developing and delivering a digital health intervention requires expertise and time commitment from a range of personnel. Teams developing digital narrative interventions need to allocate substantial resources to curating narrative collections. Implications for practice: This study identifies the development and delivery resource use categories of a digital health intervention to promote the consistent reporting of costs and informs future decision-making about the costs of delivering the NEON Intervention at scale. Trial registration: NEON Trial: ISRCTN11152837, registered 13 August 2018, http://www.isrctn.com/ISRCTN11152837. NEON-O Trial: ISRCTN63197153, registered 9 January 2020, http://www.isrctn.com/ISRCTN63197153.

'Maybe I Shouldn't Talk': The Role of Power in the Telling of Mental Health Recovery Stories.

Mental health 'recovery narratives' are increasingly used within teaching, learning and practice environments. The mainstreaming of their use has been critiqued by scholars and activists as a co-option of lived experience for organisational purposes. But how people report their experiences of telling their stories has not been investigated at scale. We present accounts from 71 people with lived experience of multiple inequalities of telling their stories in formal and informal settings. A reflexive thematic analysis was conducted within a critical constructivist approach. Our overarching finding was that questions of power were central to all accounts. Four themes were identified: (1) Challenging the status quo; (2) Risky consequences; (3) Producing 'acceptable' stories; (4) Untellable stories. We discuss how the concept of narrative power foregrounds inequalities in settings within which recovery stories are invited and co-constructed, and conclude that power imbalances complicate the seemingly benign act of telling stories of lived experience.

Typology of content warnings and trigger warnings: Systematic review.

Content and trigger warnings give information about the content of material prior to receiving it. Different typologies of content warnings have emerged across multiple sectors, including health, social media, education and entertainment. Benefits arising from their use are contested, with recent empirical evidence from educational sectors suggesting they may raise anxiety and reinforce the centrality of trauma experience to identity, whilst benefits relate to increased individual agency in making informed decisions about engaging with content. Research is hampered by the absence of a shared inter-sectoral typology of warnings. The aims of this systematic review are to develop a typology of content warnings and to identify the contexts in which content warnings are used. The review was pre-registered (ID: CRD42020197687, URL: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42020197687) and used five sources: electronic databases covering multiple sectors (n = 19); table of contents from multi-sectoral journals (n = 5), traditional and social media websites (n = 53 spanning 36 countries); forward and backward citation tracking; and expert consultation (n = 15). In total, 6,254 documents were reviewed for eligibility and 136 documents from 32 countries were included. These were synthesised to develop the Narrative Experiences Online (NEON) content warning typology, which comprises 14 domains: Violence, Sex, Stigma, Disturbing content, Language, Risky behaviours, Mental health, Death, Parental guidance, Crime, Abuse, Socio-political, Flashing lights and Objects. Ten sectors were identified: Education, Audio-visual industries, Games and Apps, Media studies, Social sciences, Comic books, Social media, Music, Mental health, and Science and Technology. Presentation formats (n = 15) comprised: education materials, film, games, websites, television, books, social media, verbally, print media, apps, radio, music, research, DVD/video and policy document. The NEON content warning typology provides a framework for consistent warning use and specification of key contextual information (sector, presentation format, target audience) in future content warning research, allowing personalisation of content warnings and investigation of global sociopolitical trends over time.

Characteristics of alcohol recovery narratives: Systematic review and narrative synthesis.

BACKGROUND AND AIMS: Narratives of recovery from alcohol misuse have been analysed in a range of research studies. This paper aims to produce a conceptual framework describing the characteristics of alcohol misuse recovery narratives that are in the research literature, to inform the development of research, policy, and practice. METHODS: Systematic review was conducted following PRISMA guidelines. Electronic searches of databases (Ovid MEDLINE, EMBASE, CINHAL, PsychInfo, AMED and SCOPUS), grey literature, and citation searches for included studies were conducted. Alcohol recovery narratives were defined as "first-person lived experience accounts, which includes elements of adversity, struggle, strength, success, and survival related to alcohol misuse, and refer to events or actions over a period of time". Frameworks were synthesised using a three-stage process. Sub-group analyses were conducted on studies presenting analyses of narratives with specific genders, ages, sexualities, ethnicities, and dual diagnosis. The review was prospectively registered (PROSPERO CRD42021235176). RESULTS: 32 studies were included (29 qualitative, 3 mixed-methods, 1055 participants, age range 17-82years, 52.6% male, 46.4% female). Most were conducted in the United States (n = 15) and Europe (n = 11). No included studies analysed recovery narratives from lower income countries. Treatment settings included Alcoholic Anonymous (n = 12 studies), other formal treatment, and 'natural recovery'. Eight principle narrative dimensions were identified (genre, identity, recovery setting, drinking trajectory, drinking behaviours, stages, spirituality and religion, and recovery experience) each with types and subtypes. All dimensions were present in most subgroups. Shame was a prominent theme for female narrators, lack of sense of belonging and spirituality were prominent for LGBTQ+ narrators, and alienation and inequality were prominent for indigenous narrators. CONCLUSIONS: Review provides characteristics of alcohol recovery narratives, with implications for both research and healthcare practice. It demonstrated knowledge gaps in relation to alcohol recovery narratives of people living in lower income countries, or those who recovered outside of mainstream services. PROTOCOL REGISTRATION: Prospero registration number: CRD42020164185.

How do recorded mental health recovery narratives create connection and improve hopefulness?

BACKGROUND: Mental health recovery narratives are an active ingredient of recovery-oriented interventions such as peer support. Recovery narratives can create connection and hope, but there is limited evidence on the predictors of impact. AIMS: The aim of this study was to identify characteristics of the narrator, narrative content and participant which predict the short-term impact of recovery narratives on participants. METHOD: Independent studies were conducted in an experimental (n = 40) and a clinical setting (n = 13). In both studies, participants with mental health problems received recorded recovery narratives and rated impact on hopefulness and connection. Predictive characteristics were identified using multi-level modelling. RESULTS: The experimental study found that narratives portraying a narrator as living well with mental health problems that is intermediate between no and full recovery, generated higher self-rated levels of hopefulness. Participants from ethnic minority backgrounds had lower levels of connection with narrators compared to participants from a white background, potentially due to reduced visibility of a narrator's diversity characteristics. CONCLUSIONS: Narratives describing partial but not complete recovery and matching on ethnicity may lead to a higher impact. Having access to narratives portraying a range of narrator characteristics to maximise the possibility of a beneficial impact on connection and hopefulness.

Uses and Misuses of Recorded Mental Health Lived Experience Narratives in Healthcare and Community Settings: Systematic Review.

Mental health lived experience narratives are first-person accounts of people with experience of mental health problems. They have been published in journals, books and online, and used in healthcare interventions and anti-stigma campaigns. There are concerns about their potential misuse. A four-language systematic review was conducted of published literature characterizing uses and misuses of mental health lived experience narratives within healthcare and community settings. 6531 documents in four languages (English, Danish, Swedish, Norwegian) were screened and 78 documents from 11 countries were included. Twenty-seven uses were identified in five categories: political, societal, community, service level and individual. Eleven misuses were found, categorized as relating to the narrative (narratives may be co-opted, narratives may be used against the author, narratives may be used for different purpose than authorial intent, narratives may be reinterpreted by others, narratives may become patient porn, narratives may lack diversity), relating to the narrator (narrator may be subject to unethical editing practises, narrator may be subject to coercion, narrator may be harmed) and relating to the audience (audience may be triggered, audience may misunderstand). Four open questions were identified: does including a researcher's personal mental health narrative reduce the credibility of their research?: should the confidentiality of narrators be protected?; who should profit from narratives?; how reliable are narratives as evidence?).

Post-traumatic growth in psychosis: a systematic review and narrative synthesis.

BACKGROUND AND OBJECTIVE: People with psychosis report experiences of highly traumatic events. Positive change or post-traumatic growth (PTG) can occur as a result of traumatic experiences. Yet there is limited attention on PTG in psychosis, possibly due to the negative impact of psychotic symptoms on functioning and quality of life. The aim of this review was to identify significant correlates and mediators of PTG in psychosis, and to develop a conceptual framework synthesising facilitators of PTG in psychosis. METHOD: Ten electronic databases were searched in seven languages, and five journals and grey literature were searched in English. Quantitative studies were eligible if examining correlates, mediators, or the temporal relationship between PTG and one or more variables. Qualitative studies were eligible if describing PTG arising from experiences of psychosis. Findings from quantitative papers were grouped by analysis method, with significant correlates, mediators, and temporal relationships descriptively reported upon. Narrative synthesis was conducted on findings in qualitative papers. RESULTS: Thirty-seven papers were included. Significant correlates and mediators of PTG were identified. Mediators of PTG in psychosis included meaning in life, coping self-efficacy, core beliefs, and self-reported recovery. No studies describing the temporal relationship between PTG and psychosis were identified. The narrative synthesis identified seven facilitators of PTG in psychosis: Personal identity and strength, Receiving support, Opportunities and possibilities, Strategies for coping, Perspective shift, Emotional experience, and Relationships, giving the acronym PROSPER. CONCLUSIONS: Individuals with psychosis can be supported to grow from traumatic experiences. Clinicians can support PTG through the provision of trauma-informed care that supports positively valued identity changes. For researchers, the findings provide an evidence-based theoretical framework for conceptualising PTG, which can be validated through longitudinal cohort studies and underpin the development of new clinical interventions.

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

BACKGROUND: The internet enables sharing of narratives about health concerns on a substantial scale, and some digital health narratives have been integrated into digital health interventions. Narratives describing recovery from health problems are a focus of research, including those presented in recorded (eg, invariant) form. No clinical trial has been conducted on a web-based intervention providing access to a collection of Recorded Recovery Narratives (RRNs). OBJECTIVE: This study presents knowledge produced through the development of the Narrative Experiences Online (NEON) Intervention, a web-based intervention incorporating the algorithmic recommendation of RRNs. METHODS: Knowledge was gathered through knowledge integration (KI) activities. KI1 synthesized previous studies to produce the NEON Impact Model describing how accessing RRNs produces health-related outcomes. KI2 developed curation principles for the NEON Collection of RRNs through consultation with the NEON Lived Experience Advisory Panel and the curation of a preliminary collection. KI3 identified harm minimization strategies for the NEON Intervention through consultation with the NEON International Advisory Board and Lived Experience Advisory Panel. The NEON Intervention was finalized through 2 research studies (RS). In RS1, mental health service users (N=40) rated the immediate impact of randomly presented narratives to validate narrative feedback questions used to inform the recommendation algorithm. In RS2, mental health service users (n=25) were interviewed about their immediate response to a prototype of the NEON Intervention and trial procedures and then were interviewed again after 1 month of use. The usability and acceptability of the prototype and trial procedures were evaluated and refinements were made. RESULTS: KI1 produced the NEON Impact Model, which identifies moderators (recipient and context), mechanisms of connection (reflection, comparison, learning, and empathy), processes (identification of change from narrative structure or content and internalization of observed change), and outcomes (helpful and unhelpful). KI2 identified 22 curation principles, including a mission to build a large, heterogeneous collection to maximize opportunities for connection. KI3 identified seven harm minimization strategies, including content warnings, proactive and reactive blocking of narratives, and providing resources for the self-management of emotional distress. RS1 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. The order of presentation did not predict narrative feedback. RS2 identified amendments to web-based trial procedures and the NEON Intervention. Participants accessed some narratives multiple times, use reduced over the 4-week period, and narrative feedback was provided for 31.8% (105/330) of narrative accesses. CONCLUSIONS: RRNs can be integrated into web-based interventions. Evaluating the NEON Intervention in a clinical trial is feasible. The mixed methods design for developing the NEON Intervention can guide its extension to other clinical populations, the design of other web-based mental health interventions, and the development of narrative-based interventions in mental health.

Institutional injustice: Implications for system transformation emerging from the mental health recovery narratives of people experiencing marginalisation.

BACKGROUND: Institutional injustice refers to structures that create disparities in resources, opportunities and representation. Marginalised people experience institutional injustice, inequalities and discrimination through intersecting personal characteristics and social circumstances. This study aimed to investigate sources of institutional injustice and their effects on marginalised people with experience of mental health problems. METHODS: Semi-structured interviews were conducted with 77 individuals from marginalised groups with experience of mental health problems, including psychosis, Black, Asian and minority ethnic (BAME) populations, complex needs and lived experience as a work requirement. These were analysed inductively enabling sensitising concepts to emerge. FINDINGS: Three processes of institutional injustice were identified: not being believed because of social status and personal backgrounds; not being heard where narratives did not align with dominant discourses, and not being acknowledged where aspects of identity were disregarded. Harmful outcomes included disengagement from formal institutions through fear and mistrust, tensions and reduced affiliation with informal institutions when trying to consolidate new ways of being, and damaging impacts on mental health and wellbeing through multiple oppression. CONCLUSIONS: Institutional injustice perpetuates health inequalities and marginalised status. Master status, arising from dominant discourses and heuristic bias, overshadow the narratives and experiences of marginalised people. Cultural competency has the potential to improve heuristic availability through social understandings of narrative and experience, whilst coproduction and narrative development through approaches such as communities of practice might offer meaningful avenues for authentic expression.

The Influence of Curator Goals on Collections of Lived Experience Narratives: A Qualitative Study.

OBJECTIVE: The aim of this study was to investigate how curator goals influence the design of curation processes for collections of mental health lived experience narratives. The objectives were (1) to characterize the goals of a range of curators of existing collections, and (2) to identify specific working practices impacted by these goals. RESEARCH DESIGN AND METHODS: Thirty semi-structured interviews were conducted with a purposive sample of curators of collections of lived experience narratives. Thematic analysis was conducted. Goals and impacts on working practice were tabulated, and narrative summaries were constructed to describe the relation between the two. RESULTS: Curators interviewed were from seven countries (Brazil, Canada, Hong Kong, India, Italy, UK, USA), and 60% had lived experience of mental health service usage. Participants discussed eight goals that inspired their work: fighting stigma, campaigning for change in service provision, educating about mental health and recovery, supporting others in their recovery journey, critiquing psychiatry, influencing policy, marketing health services, and reframing mental illness. These goals influenced how decisions were made about inclusion of narratives, editing of narrative content, withdrawal rights, and anonymization. CONCLUSIONS: Our work will support the development of curatorship as a professional practice by shaping training for curators, helping curators reflect on the outcomes they would like to achieve, and helping individuals planning a collection to reflect on their motivations. We argue that transparency is an essential orientation for curators. Transparency allows narrators to make an informed choice about donating a narrative. It allows policy makers to understand the influences on a collection and hence treat it as a source of collective evidence.

The VOICES Typology of Curatorial Decisions in Narrative Collections of the Lived Experiences of Mental Health Service Use, Recovery, or Madness: Qualitative Study.

BACKGROUND: Collections of lived experience narratives are increasingly used in health research and medical practice. However, there is limited research with respect to the decision-making processes involved in curating narrative collections and the work that curators do as they build and publish collections. OBJECTIVE: This study aims to develop a typology of curatorial decisions involved in curating narrative collections presenting lived experiences of mental health service use, recovery, or madness and to document approaches selected by curators in relation to identified curatorial decisions. METHODS: A preliminary typology was developed by synthesizing the results of a systematic review with insights gained through an iterative consultation with an experienced curator of multiple recovery narrative collections. The preliminary typology informed the topic guide for semistructured interviews with a maximum variation sample of 30 curators from 7 different countries. All participants had the experience of curating narrative collections of the lived experiences of mental health service use, recovery, or madness. A multidisciplinary team conducted thematic analysis through constant comparison. RESULTS: The final typology identified 6 themes, collectively referred to as VOICES, which stands for values and motivations, organization, inclusion and exclusion, control and collaboration, ethics and legal, and safety and well-being. A total of 26 subthemes related to curation decisions were identified. CONCLUSIONS: The VOICES typology identifies the key decisions to consider when curating narrative collections about the lived experiences of mental health service use, recovery, or madness. It might be used as a theoretical basis for a good practice resource to support curators in their efforts to balance the challenges and sometimes conflicting imperatives involved in collecting, organizing, and sharing narratives. Future research might seek to document the use of such a tool by curators and hence examine how best to use VOICES to support decision making.

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.

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 non-psychosis mental health problems and those who care for others experiencing mental health problems respectively. METHODS: The NEON Trial will recruit 683 participants with experience of psychosis. The NEON-O Trial will recruit at least 100 participants with experience of non-psychosis mental health problems. The NEON-C Trial will recruit at least 100 participants with experience of caring for others who have experienced mental health problems. In all three trials, participants will be randomly allocated into one of two arms. Intervention arm participants will receive treatment as usual plus immediate access to the NEON Intervention for 1 year. Control arm participants will receive treatment as usual plus access to the NEON Intervention after 1 year. All participants will complete demographics and outcome measures at baseline, 1 week, 12 weeks and 52 weeks. For the NEON Trial, the primary outcome measure is the Manchester Short Assessment of Quality of Life at 52 weeks, and secondary outcome measures are the CORE-10, Herth Hope Index, Mental Health Confidence Scale and Meaning in Life Questionnaire. A cost-effectiveness analysis will be conducted using data collected through the EQ-5D-5 L and the Client Service Receipt Inventory. DISCUSSION: NEON Trial analyses will establish both effectiveness and cost-effectiveness of the NEON Intervention for people with experience of psychosis, and hence inform future clinical recommendations for this population. TRIAL REGISTRATION: All trials were prospectively registered with ISRCTN. NEON Trial: ISRCTN11152837 . Registered on 13 August 2018. NEON-C Trial: ISRCTN76355273 . Registered on 9 January 2020. NEON-O Trial: ISRCTN63197153 . Registered on 9 January 2020.