'Physically it was fine, I'd eat what normal people do. But it's never like this in my head': A qualitative diary study of daily experiences of life in recovery from an eating disorder.

OBJECTIVE: High eating disorder (ED) relapse rates stress the need for clearer understanding around how recovery is experienced and maintained. Recent research endorses the concept of recovery as a process rather than an endpoint. This study aimed to investigate daily experiences of living in recovery from an ED. METHOD: Fourteen participants who self-identified as recovered from a formally diagnosed ED were recruited online. A qualitative diary app was used for data collection. Participants completed written or audio open-ended diary entries every other day for 2 weeks describing their experiences, thoughts, and feelings. Diaries were analysed using reflexive thematic analysis. RESULTS: Four themes were developed. 'Ever-present eating disordered thoughts' highlights how pervasive these thoughts remain for participants. 'Impact of social discourses' unpacks the challenges of maintaining recovery while surrounded by unhelpful social discourses about food and body image. 'Recovery is precarious' highlights how a combination of stressors can build up to threaten recovery. 'Finding balance in recovery' illustrates the many ways participants try to manage their recovery each day. CONCLUSIONS: The findings make it clear that living in recovery from an ED is a complex process that must be navigated daily. Recommendations for treatment and recovery support are discussed.

Autopsy of a failed trial part 2: Outcomes, challenges, and lessons learnt from the DAISIES trial.

OBJECTIVE: The relative merits of inpatient or day-treatment for adults with anorexia nervosa (AN) are unknown. The DAISIES trial aimed to establish the non-inferiority of a stepped-care day patient treatment (DPT) approach versus inpatient treatment as usual (IP-TAU) for improving body mass index (BMI) at 12 months in adults with AN. The trial was terminated due to poor recruitment. This paper presents outcomes and investigates the reasons behind the trial's failure. METHOD: Fifteen patients with AN (of 53 approached) participated and were followed-up to 6 or 12 months. Summary statistics were calculated due to low sample size, and qualitative data concerning treatment experiences were analysed using thematic analysis. RESULTS: At baseline, participants in both trial arms rated stepped-care DPT as more acceptable. At 12 months, participants' BMIs had increased in both trial arms. Qualitative analysis highlighted valued and challenging aspects of care across settings. Only 6/12 sites opened for recruitment. Among patients approached, the most common reason for declining participation was their treatment preference (n = 12/38). CONCLUSIONS: No conclusions can be drawn concerning the effectiveness of IP-TAU and stepped-care DPT, but the latter was perceived more positively. Patient-related, service-related and systemic factors (COVID-19) contributed to the trial's failure. Lessons learnt can inform future studies.

Autopsy of a failed trial part 1: A qualitative investigation of clinician's views on and experiences of the implementation of the DAISIES trial in UK-based intensive eating disorder services.

OBJECTIVE: The DAISIES trial, comparing inpatient and stepped-care day patient treatment for adults with severe anorexia nervosa was prematurely terminated in March 2022 due to poor recruitment. This qualitative study seeks to understand the difficulties faced during the trial by investigating stakeholders' views on and experiences of its implementation. METHOD: Semi-structured interview and focus group transcripts, and trial management and oversight group meeting minutes from May 2020-June 2022 were analysed using thematic analysis. Participants were 47 clinicians and co-investigators involved with the DAISIES trial. The Non-Adoption, Abandonment, Scale-up, Spread, and Sustainability (NASSS) framework was applied to the interpretive themes to classify barriers and facilitators to implementation. RESULTS: Five themes were identified: incompatible participation interests; changing standard practice; concerns around clinical management; systemic capacity and capability issues; and Covid-19 disrupting implementation. Applying the NASSS framework indicated the greatest implementation challenges to arise with the adopters (e.g. patients, clinicians), the organisational systems (e.g. service capacity), and the wider socio-political context (e.g. Covid-19 closing services). CONCLUSIONS: Our findings emphasise the top-down impact of systemic-level research implementation challenges. The impact of the Covid-19 pandemic accentuated pre-existing organisational barriers to trial implementation within intensive eating disorder services, further limiting the capacity for research.

The clinical effectiveness and cost-effectiveness of a 'stepping into day treatment' approach versus inpatient treatment as usual for anorexia nervosa in adult specialist eating disorder services (DAISIES trial): a study protocol of a randomised controlled multi-centre open-label parallel group non-inferiority trial.

BACKGROUND: Anorexia nervosa (AN) is a serious and disabling mental disorder with a high disease burden. In a proportion of cases, intensive hospital-based treatments, i.e. inpatient or day patient treatment, are required, with day patient treatment often being used as a 'step-down' treatment after a period of inpatient treatment. Demand for such treatment approaches has seen a sharp rise. Despite this, the relative merits of these approaches for patients, their families, and the NHS and wider society are relatively unknown. This paper describes the rationale for, and protocol of, a two-arm multi-centre open-label parallel group non-inferiority randomised controlled trial, evaluating the effectiveness and cost-effectiveness of these two intensive treatments for adults with severe AN: inpatient treatment as usual and a stepped care day patient approach (the combination of day patient treatment with the option of initial inpatient treatment for medical stabilisation). The main aim of this trial is to establish whether, in adults with severe AN, a stepped care day patient approach is non-inferior to inpatient treatment as usual in relation to improving body mass index (BMI) at 12 months post-randomisation. METHODS: 386 patients with a Diagnostic and Statistical Manual 5th edition diagnosis of severe AN or related disorder, with a BMI of ≤16 kg/m2 and in need of intensive treatment will be randomly allocated to either inpatient treatment as usual or a stepped care day patient approach. Patients in both groups will receive treatment until they reach a healthy weight or get as close to this point as possible. Assessments will be conducted at baseline (prior to randomisation), and at 6 and 12 months post-randomisation, with additional monthly symptom monitoring. The primary outcome will be BMI at the 12-month post-randomisation assessment. Other outcomes will include psychosocial adjustment; treatment motivation, expectations and experiences; cost-effectiveness; and carer burden. DISCUSSION: The results of this study will provide a rigorous evaluation of two intensive treatment approaches which will inform future national and international treatment guidelines and service provision. TRIAL REGISTRATION: ISRCTN ISRCTN10166784 . Registered 28 February 2020. ISRCTN is a primary registry of the World Health Organization (WHO) International Clinical Trials Registry Platform (ICTRP) network and includes all items from the WHO Trial Registration Data Set.

Patient perspectives on premature termination of eating disorder treatment: a systematic review and qualitative synthesis.

BACKGROUND: High rates of premature treatment termination are a well-reported issue in eating disorder treatment, and present a significant barrier for treatment effectiveness and longer term health outcomes of patients with eating disorders. Understanding patient perspectives on this phenomenon is essential in improving treatment completion rates and informing research and intervention development. The aim of this review is to synthesise qualitative literature on patient perspectives of premature termination of eating disorder treatment and to summarise the key issues leading to discontinuation of treatment. METHODS: A systematic review of 1222 articles was conducted to identify studies using qualitative methods to investigate patient experiences of prematurely terminating eating disorder treatment. Ten articles were included in the review, with thematic synthesis used to analyse the primary research and develop overarching analytical themes. RESULTS: Conflict around enmeshment of eating disorder with identity, and lack of support with reconstructing a sense of self without the eating disorder; challenges of managing pressures of social and clinical relationships while feeling unheard and misunderstood by both; expectations and disappointments around treatment; and dissatisfaction with progress were key themes behind premature termination of treatment. CONCLUSIONS: The findings of this review demonstrate the key issues influencing the decision to end treatment early, highlighting the contribution of individual, environmental, and service-level factors. Implications of these factors are discussed and suggestions raised for future research and service development.

Clinicians' perspectives on supporting individuals with severe anorexia nervosa in specialist eating disorder intensive treatment settings during the COVID-19 pandemic.

BACKGROUND: The COVID-19 pandemic has significantly affected intensive treatment settings (i.e., inpatient [IP] and day patient [DP]) in specialist eating disorder services. However, the impact on clinicians working in these services is largely unknown. We therefore explored the perspectives of those supporting individuals with severe anorexia nervosa (AN) in intensive treatment settings during the pandemic. METHODS: Between May 2020 and June 2021, we interviewed clinicians (n = 21) who delivered IP and/or DP treatment to patients with severe AN in four specialist eating disorder services in the United Kingdom. Data relating to experiences during COVID-19 were analysed using reflexive thematic analysis. RESULTS: We identified six themes: Disruptions to Routine Treatment; Introduction of Virtual Treatment; Separation from Treatment, Others and the World; Impact on Recovery; Impact on Staff; and Pressure on Referral Pathways. COVID-19 posed significant challenges to IP and DP services: forcing closures, operating with restrictions and virtual treatment, and impacting delivery of essential treatment components, referral pathways, clinician wellbeing, risk management, and patient isolation and recovery trajectories. Opportunities arose, in particular in DP services offering virtual support. CONCLUSIONS: COVID-19 challenged the continuation of multidisciplinary treatment. The findings underline the necessity for medical, psychological, practical, and nutritional support, as well as carer involvement and fostering social connections to remain at the forefront of intensive treatment for severe AN. They also emphasise the uncertainty surrounding which intensive treatment may be best suited to which patient when, particularly within the context of virtual DP support.

The COVID-19 pandemic has significantly affected eating disorder inpatient and day patient treatment. However, the impact of the pandemic on clinicians working in these settings is largely unknown. We interviewed twenty-one clinicians working in specialist inpatient and day patient eating disorder services to explore their views on supporting people with severe anorexia nervosa during the pandemic. We analysed the transcripts using thematic analysis. We identified that COVID-19 posed significant challenges for intensive treatment settings, forcing the closure or merging of eating disorder services, the delivery of treatment under restrictions, and the introduction of virtual treatment. These changes challenged the delivery of multidisciplinary treatment for people with severe anorexia nervosa and impacted referral pathways, clinicians' wellbeing, risk management, and patients' isolation and recovery trajectories. We also identified some opportunities as a result of the pandemic, in particular in day patient services offering virtual support. These opportunities included more accessible treatment for patients and their families, more individualised treatment, and the chance for treatment innovation and creativity.

Clinicians' perspectives on supporting individuals with severe anorexia nervosa in specialist eating disorder intensive treatment settings.

BACKGROUND: Admissions to intensive treatment (i.e., inpatient [IP] and/or day patient [DP]) for individuals with severe anorexia nervosa (AN) are common. Growing literature indicates potential risks and benefits of each intensive treatment approach; however, existing research has focused on patient and carer perspectives of these treatments. Also, there is scant empirical evidence available for guiding the parameters of intensive treatments for AN. We therefore explored clinicians' perspectives and experience of supporting adults with severe AN in intensive settings. METHODS: We conducted twenty one semi-structured interviews with clinicians who deliver intensive treatments (i.e., IP and/or DP) for individuals with severe AN across four specialist Eating Disorder Services in the United Kingdom between May 2020 and June 2021. We asked clinicians about their views and experiences of supporting individuals with severe AN in intensive treatment settings and the challenges and opportunities associated with IP and DP treatment. Data were analysed using reflexive thematic analysis supported by NVivo software. RESULTS: Five broad and interrelated themes were identified: (1) Intensive Support; (2) The Severity of Patients' Illnesses; (3) Hope and Recovery; (4) Which Treatment When; (5) Limited Resources; and (6) Carer Burden. We identified various similarities between the two intensive treatment approaches, including the value of intensive and multidisciplinary support and carer involvement, and the challenge of managing complex and unique needs in resource-limited intensive settings. We also found differences in the relationship of treatment to patients' home environments, the necessity of patient motivation, and the management of risk. CONCLUSIONS: Both intensive treatment settings are valued by clinicians; however, there are unique challenges and opportunities for supporting individuals with severe AN within each. Our findings suggest DP treatment may be used as an alternative to IP treatment for individuals with severe AN. However, clear questions remain over which intensive treatment setting is best suited to which patient when and should be the focus of future research.

Some people with anorexia nervosa will need intensive treatment (e.g., inpatient and day patient treatment) during the course of their illness. We interviewed twenty-one clinicians working in Specialist Eating Disorder Services to explore their views on supporting people with severe anorexia nervosa in inpatient and day patient services and about the perceived advantages and disadvantages of these. We analysed the transcripts of these interviews using thematic analysis. We identified similarities between the two intensive treatment approaches. These included the value of intensive and multidisciplinary support, the importance of carer involvement, and the challenge of managing patient's complex and unique needs in services with limited resources. We also found differences between inpatient and day patient treatment. These included how treatment relates to patients' home environments, the importance of patient motivation, and managing risk. Day patient treatment may be an alternative to inpatient treatment for people with severe anorexia nervosa. Future research should investigate which intensive treatment setting is best suited to which patient and when.

Navigating the mental health system: Narratives of identity and recovery among people with psychosis across ethnic groups.

There is consistent evidence that members of the black Caribbean population in the UK are more likely to have coercive relationships with mental health services, typified by high levels of police involvement and compulsory treatment. This research has relied upon a medical epidemiological framework that has enumerated differences in service use but failed to unravel the complex interplay of individual, social, and cultural factors that inform the pathway to care. The purpose of this study was to explore the journey through mental health services from the perspective of individuals from the black Caribbean and majority white British population to help understand variation in the use of mental health services. Individual interviews were conducted with 17 black Caribbean, 15 white British, and 3 non-British white people with psychosis as part of AESOP-10, a 10 year follow up of an ethnically diverse cohort of individuals with first episode psychosis in the UK. Thematic narrative analysis identified three overarching narrative categories: 'losing self within the system' narratives gave primacy to individuals' identity as a chronic psychiatric patient with participants unable to break the cycle of service use; 'steadying self through the system' narratives combined recognition of the value of psychiatry and its limitations with the ability to access psychological therapy and protect valued social roles; 'finding strength beyond the system' narratives challenged negative dominant discourses and emphasised social, interpersonal and intrapersonal factors in recovery. We found variation in narratives across ethnic groups with 'losing self within the system' and 'finding strength beyond the system' narratives most common, though not exclusive to, black Caribbean participants. Distress appeared rooted in social structures that disadvantage black people, and psychiatry appeared to be experienced as a further form of oppression, that initially provoked resistance and fear, and over time, resignation to the identity of psychiatric patient.

Adapting and Optimizing Problem Adaptation Therapy (PATH) for People With Mild-Moderate Dementia and Depression.

OBJECTIVE: To adapt and optimize problem adaptation therapy for depression in dementia by grounding it in the lives of people with dementia, caregivers and clinicians. METHODS: A person-centered qualitative approach was taken to elicit the unique cognitive, psychological and social needs of people with dementia relevant to the adaptation of the intervention. A two-stage design was used: the first involved interviews and focus groups to identify priorities and concerns surrounding depression in dementia, the second trialling of the adapted intervention. PARTICIPANTS: Ten people with dementia and nine caregivers participated in individual interviews, 35 healthcare practitioners and clinical academics with experience of working with dementia participated in focus groups. RESULTS: The findings highlight the importance of addressing key themes that typified the experience of depression among people with dementia including: a profound sense of isolation and role loss, the feeling of being both a burden and poorly understood, polarized thinking, interpersonal tensions, diverging views among carers and people with dementia about their capabilities, and changeability in cognitive ability and mood. These themes were used to inform adaptation of the intervention manual, ensuring that its content and delivery addressed the concerns of both people with depression and dementia and those who support them. CONCLUSION: Implications for PATH included a focus on facilitating open communication, supporting the continuation of valued roles, and improving confidence.

"Now It's Just Old Habits and Misery"-Understanding the Impact of the Covid-19 Pandemic on People With Current or Life-Time Eating Disorders: A Qualitative Study.

Background: Many aspects of the Covid-19 pandemic may make living with or recovery from an eating disorder (ED) particularly challenging. Understanding the processes which underlie the psychological and behavioral responses of people with EDs during this time are key to ensure tailored support in these unprecedented circumstances. Methods: People with lifetime EDs (n = 32) were recruited through social media from May to June 2020 during a period of strict infection control measures in the United Kingdom (i.e., "lockdown," "social distancing"). They completed open-ended questions in an online anonymous questionnaire that invited them to reflect on how various aspects of their lives have been affected by the Covid-19 pandemic, including ED symptoms and coping strategies. Responses were analyzed using thematic analysis. Results: Most respondents reported that their ED worsened or resurfaced. Isolation, low mood, anxiety, lack of structure, disruption to routines, and media/social media messages around weight and exercise seemed to contribute to this. There was a clear sense that individuals struggled with which aspects of psychological distress to prioritize, i.e., mood vs. ED cognitions and behaviors, particularly as attempts to cope with one often exacerbated the other. Nonetheless, some participants reported "silver linings" of the pandemic. Conclusions: In this self-selected sample, deterioration or recurrence of ED symptoms were the norm. This has implications for the provision of treatment and care for people with EDs both in the immediate short-term and in potential future waves of the pandemic, with a significant surge of new and re-referrals expected.