Vanessa Lawrence

Background: People living with long-term physical health conditions who are also experiencing subthreshold depression are at risk of developing major depression. In partnership with lived experience experts, clinicians, and software developers, we co-designed CommonGround, an online peer support and psychoeducation platform. CommonGround’s Theory of Change (ToC) was also conceptualized to outline the intermediate outcomes (and associated indicators of whether such outcomes are achieved) needed to improve the mental health of the target population. Objective: This qualitative study, informed by the ToC, aimed to examine the acceptability, usability, and intervention mechanisms of CommonGround and ultimately refine the ToC and corresponding intervention design ahead of definitive evaluation. Methods: A nested qualitative study was conducted within a remote, 12-week feasibility randomized controlled trial comparing CommonGround (intervention group) to signposting to National Health Service (NHS) web pages (control group). Thirty-nine participants were purposively sampled and interviewed within 6 weeks postintervention about their experiences of CommonGround and trial participation. The interview schedule and thematic framework analysis were rooted in a pretrial ToC while being responsive to emergent themes. Results: Evaluating the assumptions and intermediate outcomes (via their indicators) refined our understanding of how CommonGround may support mental well-being. Overall, participants viewed CommonGround as an appropriate, safe space to access self-management information and support from others with a unique shared understanding of chronic illness. However, many participants felt more time was needed for genuine social relations to form and community culture to evolve. Anonymity helped foster a sense of safety but, for some participants, limited the formation of genuine connections. Other factors contributing to low engagement included personal circumstances (eg, limited time). Key suggestions for future development included creating a mobile app that would be easier and more intuitive to access and navigate. Conclusions: CommonGround was considered an acceptable and appropriate space to access peer support, with the potential to positively impact psychological well-being by fostering shared understanding, support, and knowledge exchange. Beyond informing the future evaluation of CommonGround in a definitive trial, the refined ToC identifies the key preconditions, intermediate outcomes, and associated indicators, and assumptions that may underpin the acceptability and usability of digital peer support interventions in achieving their intended outcomes. We also demonstrate how evaluating and refining components of the ToC after the intervention had been implemented in the trial enabled a more nuanced understanding of how and why the intervention may work, for whom, under what circumstances, and informed changes to improve the co-designed intervention.

Background: Early intervention increases the likelihood of eating disorder recovery but many young people delay help-seeking. We developed a smartphone-friendly, online decision-making tool to address this gap (FREED-Mobile (FREED-M)). Aims: To conduct a randomised controlled feasibility trial of the FREED-M decision-making tool with 16- to 25-year-olds with a suspected eating disorder and no previous treatment for this. Method: Participants were randomly allocated to FREED-M or an active control in a parallel group, two-arm trial. Outcomes were measured at weeks 0 (baseline), 4 (post-intervention) and 12 (follow-up). The primary feasibility outcome was attrition at follow-up. Other outcomes included motivational, clinical and economic measures. Results: We over-recruited with 204 randomised participants (including 20 fraudulent participants). Main analyses were conducted with 184 genuine responders (FREED-M: n = 91, control: n = 93). At baseline, participants’ mean age was 21.0 (s.d. 2.0) years, 89% identified as female and 64% as White. Mean body mass index was 23.1 kg/m ² (6.3). N = 83 participants had an anorexia nervosa-like disorder, 101 had another eating disorder or high eating disorder risk. Attrition at week 12 was n = 112 (61%). Of the n = 42 FREED-M participants who provided acceptability ratings, 79% liked the intervention and 66% found it useful. Between-group effect sizes for motivation and readiness to change were small to medium at 4 weeks ( d = 0.27 and d = 0.15, respectively) favouring FREED-M, but differences were not sustained at follow-up ( d = −0.02 and d = −0.12, respectively). Discussions: Although the attrition rate was high, recruitment exceeded expectations. Acceptability of FREED-M was high among participants who provided acceptability ratings. Motivation/readiness to change and help-seeking are candidates for primary outcomes in a future randomised controlled trial.

Recovery Colleges are expanding internationally (264 identified in 31 countries across six continents), yet key tools for defining and assessing them were developed in high-income Anglophone contexts. We conducted a two-round international Delphi study using a cross-cultural de-centring approach to examine the cross-cultural applicability of the RECOLLECT Change Model and RECOLLECT Fidelity Measure, and to develop versions that were more applicable across the participating settings and interoperable versions of these tools. In Round 1, 54 panellists from 20 countries rated item importance and cultural difficulty and provided free-text feedback, analysed using corpus-informed linguistic methods. Core principles were broadly endorsed, but ‘co-production’, ‘recovery’, ‘professionals’ and ‘shifting the balance of power’ were interpreted inconsistently, revealing embedded assumptions about equality, autonomy and open-ended participation. Round 1 findings informed wording refinements tested in Round 2 with 41 panellists from 15 countries. All 11 revised items reached consensus for understandability and cultural appropriateness, strengthening the tools while preserving core Recovery College values. By identifying and revising culturally embedded assumptions while preserving interoperability with the original tools, this study demonstrates a transferable approach to the cross-cultural adaptation of mental health tools.

Objective: Anorexia nervosa (AN) is a complex disorder associated with significant morbidity and mortality. Some people with AN require medical admissions to manage physical complications. Currently, little is known about how these medical admissions are experienced, despite an increase in the number of individuals being hospitalised. Method: Interpretative phenomenological analysis was employed to explore adults' lived experience of medical admissions for AN, with data collected through individual interviews. Ten individuals with experience of medical admissions directly related to a diagnosis of AN took part. Findings: Six themes were identified. Admissions were often lifesaving. Gratitude was expressed for medical intervention and, for some, for an intensification of care. However, hospitalisation left many feeling scared and overwhelmed. Participants felt misunderstood and stigmatised and their illness identity continued to dominate. Mental and physical health services were experienced as disconnected and close others sometimes had to shoulder significant responsibility for care. Conclusions: Recommendations are offered regarding the value of enhancing training on AN amongst medical professionals to improve care experiences and the potential importance of a more collaborative and holistic approach that considers patients' comorbidities and personal histories. Future research should explore whether therapeutic techniques may support development of a non‐anorexic identity during or after medical admissions and what aspects of treatment can render hospitalisation harmful.

Background: In clinical practice, olanzapine is commonly used in young people with anorexia nervosa, although the underpinning evidence-base is limited. However, its efficacy, tolerability, acceptability and adherence rate, and the patients’, carers’ and clinicians’ views of olanzapine treatment are unclear. This synopsis article summarises the methods and results of the OPEN feasibility study, overarching the findings and drawing comprehensive conclusions from a quantitative feasibility outcome paper and two qualitative research papers. Methods: The OPEN study assessed the feasibility of a future randomised controlled trial on olanzapine in young people with anorexia nervosa in an open-label, one-armed feasibility study. In this study, we aimed to include 55 patients with anorexia nervosa or atypical anorexia nervosa aged 12–24 who gained < 2 kg within at least 1 month of treatment as usual. Time points for assessments were at baseline, 8 weeks, 16 weeks, and 6 or 12 months. We estimated recruitment, adherence and attrition rates and mean changes in body weight, body mass index and eating disorder psychopathology. In addition, we explored the views on and experiences with olanzapine treatment within a clinical trial setting using qualitative interviews with young people with anorexia nervosa, their families and clinicians. Results: Fifty-two people were pre-screened, 35 were eligible and 20 participants were recruited and started olanzapine. Of these, 15 continued olanzapine for ≥ 16 weeks. Participants experienced, on average, a decrease in their eating disorder psychopathology, and body weight and body mass index increased during treatment with olanzapine as an adjunct to treatment as usual. Important themes derived from semi-structured qualitative interviews with young people and their parents were: moving away from the illness towards recovery, evaluating information on olanzapine, consent and trust in shared decision-making and the ambivalence around recovery. The main themes expressed by clinicians included: acknowledging the concerns of young people with anorexia nervosa and their families, prioritising person-centred care, the limited service capacity and strict study eligibility criteria. Limitations: The study failed to meet the recruitment target and showed low adherence rates for treatment with olanzapine. Possible reasons for the recruitment difficulties and the low adherence rate include the high clinical workload of eating disorder services during and after the COVID-19 pandemic, the heterogeneity of eating disorder service setup across the country, and the reluctance of patients to agree to take olanzapine under the relatively restricted conditions of a clinical study. Conclusions: A realistic time schedule for site-preparation, recruitment, treatment and follow-up, realistic recruitment targets and easy access to medical and laboratory examinations may improve the success of future feasibility studies and randomised controlled trials in this patient group. Future work: The difficulties in conducting the OPEN study will inform the planning for future pharmacological and non-pharmacological studies in anorexia nervosa. Therefore, we developed a checklist with action points for the planning of pharmacological trials in eating disorders. Furthermore, novel pharmacological options such as typical and atypical psychedelic drugs (e.g. psilocybin and ketamine) might be more acceptable for people with anorexia nervosa as they do not have the side effect of immediate weight gain. Funding: This synopsis presents independent research funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme as award number NIHR130780.

Background: There is relatively limited psychological support dedicated to people living with long-term physical health conditions and subthreshold depressive disorder. Online peer support may be an appropriate intervention to help bolster patients’ mental well-being to prevent progression of their symptoms to major depressive disorder. For interventions to be successfully integrated into the self-management routines of people with long-term physical health conditions, they should be co-designed to ensure that they align with the wants and needs of the target audience. Objective: This study aims to coproduce an online peer support intervention with people with lived experience, software experts, clinicians, and academics through an iterative process of co-design and subsequent co-validation through usability testing. Methods: We followed a 4-stage coproduction process: co-assess, co-design, co-validate, and co-deliver. Our research advisory group was actively involved in all stages, consisting of 1 coinvestigator and 6 people with lived experience of long-term physical and/or mental health comorbidities. The co-assess and co-design stages involved our participatory design panel, which included 10 members living with various long-term conditions. The participatory design panel participated in online focus groups to assess their unmet psychosocial needs and then co-designed the intervention prototype through online workshops with software developers. The co-validation stage involved an additional group of participants (n=12) with long-term physical health conditions. During co-validation, the prototype underwent usability testing, including think-aloud exercises and semistructured interviews. Content analysis identified the priorities for the iterative development that formed the basis of further research advisory group co-design workshops. The next stage, co-delivery, involved coproducing the protocol of a feasibility and acceptability randomized controlled trial. Results: Participants highlighted that a platform must feel safe and trustworthy for the space to support the mental well-being of those living with long-term health conditions. The participatory design panel co-designed a platform prototype to meet this need. During the co-validation stage, the think-aloud exercises identified common issues related to navigation challenges and feature glitches. Content analysis of the semistructured interviews confirmed that the community forum, resources, and other platform pages were appropriate and acceptable, but revealed usability concerns. Participants stressed the need for intuitive navigation and suggested new features that would enhance user experience. Facilitators and barriers to engagement were also noted, including the importance of fostering trust in the platform’s ethos and branding to create a safe space. Through iterative development and subsequent usability testing, the final prototype was approved. Conclusions: We have provided a worked example of a comprehensive, coproduction process where we worked alongside people with lived experience to successfully design an online peer support platform with embedded psychoeducation. The platform, called CommonGround, is ready to be evaluated in a feasibility randomized controlled trial.

Background: Online peer support can help people living with long-term physical health conditions to manage their mental well-being. Although the potential negative events that can occur and risks associated with web-based peer communities are well recognized, our understanding of how best to moderate these spaces is relatively limited, particularly with regard to new communities. Previous work has focused on the experiences of either moderators or community members. Objective: This study aims to explore the perspectives of both members and moderators of a new online peer support community to evaluate the moderation procedures and inform recommendations for best practice. Methods: Community members (n=39) who participated in a research trial of a new online peer community, CommonGround, were interviewed. The moderation team (n=5) was invited to a focus group. Community member interviews explored their opinions of moderation policies and the behavior of the moderation team. The moderator focus group explored their experiences of moderating the community, including perceived benefits, common challenges, and areas for improvement. All interviews and the focus group were conducted online, audio-recorded, and transcribed verbatim. An inductive thematic analysis was conducted to sort the data into overarching themes through an iterative process. Results: Effective moderation was considered critical in creating a safe space that members wanted to engage with and for mitigating any risks, particularly around the spread of medical misinformation. Both moderators and community members felt that the moderation policies and practices were appropriate and applicable to the community. Moderators found navigating the moderation threshold, where they balanced safety against free speech, challenging when determining whether to intervene or not. Being part of a team with mixed clinical expertise helped moderators build confidence in navigating this threshold and also presented other benefits of easy access to support and improving the consistency of their moderation practices. It was suggested that in order for a community to flourish, community members would self-moderate. However, moderators and members felt that the strong community culture and high levels of member engagement that are needed to support self-moderation had not yet evolved. Proposed improvements to moderation included new features to support the efficiency of identifying new content for review and reviewing the rule of anonymity. Conclusions: Moderation is critical in making online peer communities feel safe and engaging. Moderation practices should be co-produced with the target audience to ensure that they are aligned with the community’s unique moderation wants and needs, including clear escalation pathways, transparent communication patterns, and plans to review and update policies or procedures as the community evolves. There should be technological features that promote self-moderation, as the community may shift towards self-moderation as it matures. It is also critical to ensure that moderators feel supported so that they are best placed to support the broader community. Trial Registration: ClinicalTrials.gov NCT06222346; https://clinicaltrials.gov/study/NCT06222346 International Registered Report Identifier (IRRID): RR2-10.2196/71513

Aims and method: Recovery Colleges are adult education initiatives supporting personal recovery for individuals with mental health difficulties. We characterised a national (England) inception cohort of mental health service users, students from the Recovery Colleges Characterisation and Testing 2 programme, and compared those attending different Recovery College types on sociodemographic, clinical, service use and student-reported outcomes over the 4 months prior to enrolment. Mixed-effects regression models were used to assess differences. Results: The cohort comprised 498 students from 36 Recovery Colleges across England; 77.7% attended strengths-oriented Recovery Colleges. Mean age was 39 years (s.d. 12); most were female (72.1%) and White (81.5%). Common diagnoses were mood (31.3%) and anxiety disorders (29.7%). No significant differences were found between students attending strengths- versus community-oriented Recovery Colleges. Clinical implications: Strengths- and community-oriented Recovery Colleges have similar service user student populations. Certain groups that may be underrepresented in Recovery Colleges and Recovery College research include older adults, men, those with developmental disorders and ethnic minority populations.

Background: Perinatal obsessive–compulsive disorder (pOCD) is a common mental health difficulty. For some women with pOCD, a psychiatric in-patient admission is deemed necessary. In the UK, Mother and Baby Units (MBUs) are currently best practice for in-patient admission in the perinatal period. Wider OCD literature and pOCD case studies suggest the MBU environment may pose challenges to the treatment of pOCD. Aims: To date, there has been no research exploring pOCD on MBUs, therefore, this study aimed to qualitatively explore women and professionals’ experiences of pOCD on MBUs. Method: Semi-structured interviews were conducted with eight women who self-identified as having experienced pOCD and an admission to an MBU, and ten professionals who had experience working with women with pOCD on MBUs. Interviews took place virtually and were recorded and transcribed. Reflexive thematic analysis was used to analyse the data. Results: Six themes were identified. (a) ‘MBU a last resort for OCD’, (b) ‘Developing a shared understanding of OCD’, (c) ‘A whole team approach to treatment’, (d) ‘Choice and control over exposure’, (e) ‘Ward as a safety net’ and (f) ‘Transitioning back to real life’. Conclusions: The research highlighted a number of challenges in providing treatment for pOCD in this environment and suggestions are made for the development of clinical guidelines for supporting women with pOCD and designing specific training for MBU professionals.