Transition support for patients admitted to intensive treatment for anorexia nervosa: qualitative study of patient and carer experiences of a hybrid online guided self-help intervention (ECHOMANTRA).

BACKGROUND: Adults with anorexia nervosa experience high levels of relapse following in-patient treatment. ECHOMANTRA is a novel online aftercare intervention for patients and carers, which provides psychoeducation and support to augment usual care. AIMS: To explore patient and carer experiences of receiving the ECHOMANTRA intervention. METHOD: This is part of the process evaluation of the ECHOMANTRA intervention as delivered in the TRIANGLE trial (ISRCTN: 14644379). Semi-structured interviews were conducted with 20 participants randomised to the ECHOMANTRA (ten patients and ten carers). Thematic analysis was used to analyse the interview transcripts. RESULTS: Five major themes were identified: (1) Mixed experience of the intervention; (2) tailoring the intervention to the stage of recovery; (3) involvement of carers; (4) acceptability of remote support; and (5) impact of self-monitoring and accountability. CONCLUSIONS: Participants were mostly positive about the support offered. The challenges of using remote and group support were counterbalanced with ease of access to information when needed. Components of the ECHOMANTRA intervention have the potential to improve care for people with eating disorders.

A description of virtual skills workshops for supporters of loved ones with eating disorders: Indicators of benefit and acceptability, clinical reflections and consideration of neurodiversity.

OBJECTIVE: Providing information and support to those supporting a loved one with an eating disorder is a key part of evidence-based service provision. We report on how we took our workshops for supporters online during the Covid-19 Pandemic when country-side physical distancing restrictions meant we were unable to work face to face. METHODS: We outline the structure of an eight-session 2-h workshop series delivered fortnightly facilitated by a multidisciplinary team of clinicians, researchers and experts by experience. We use a repeated-measures design to understand the possible benefits of the workshops on supporter skills (n = 76). RESULTS: Measured using the Caregiver Skills Scale, we observed small-sized improvements in the overall skills (D = 0.43) of n = 17 supporters who provided data at the end of the intervention. Supporters gave largely positive feedback on the virtual format. They particularly liked the opportunity to interact with other supporters. As facilitators, we overcome our initial anxiety around workshop delivery using a new platform and reflected that having more time to cover key information and for skills practice over a period of 16 weeks offered opportunities to develop and reflect on new skill together as a group. We were also able to work with larger groups of supporters, as several barriers to access were removed. CONCLUSIONS: As the workshops reached a larger number of supporters than through face to face delivery and were of benefit to those who reported on their skills, we plan to continue offering workshops to supporters online in future.

Transitions from intensive eating disorder treatment settings: qualitative investigation of the experiences and needs of adults with anorexia nervosa and their carers.

BACKGROUND: Relapse rates for individuals with anorexia nervosa after intensive hospital treatment (in-patient or full-time day care) are high. Better knowledge about the difficulties and opportunities that arise during this transition is needed to identify factors that support or hinder continued recovery upon discharge. AIMS: The aim of this study was to explore the experiences of adult patients and their chosen carers on the process of transitioning from intensive eating disorder treatment settings to the community. METHOD: Semi-structured interviews were conducted with patients with anorexia nervosa (n = 11) discharged from day or in-patient care from specialised eating disorder units across the UK, and their chosen carers (n = 20). Data were analysed with inductive thematic analysis. RESULTS: Four interrelated themes were identified for both groups. For patients, themes were continuity of care, ambivalence about continued recovery, the value of social support and a call for enhanced transition support. For carers, themes were the impact of the eating disorder on themselves and the family, perceptions of recovery and support post-discharge, the impact of previous treatment and care experiences, and desire to create a supportive transition process. CONCLUSIONS: The study provides an insight into the unique challenges that individuals with anorexia nervosa face upon leaving intensive treatment. A lack of post-discharge planning, support system and identity formation outside of anorexia nervosa were perceived as barriers to continued recovery. Patients and carers advocated for transition support that incorporates a phased, inclusive approach with accessible professional and social support in the community.

An examination of social group memberships in patients with eating disorders, carers, and healthy controls.

This study compared the quantity and quality of social group memberships in patients with anorexia nervosa (n = 30), carers of patients with anorexia nervosa, unrelated to those patients (n = 30), and two cohorts of healthy controls (n = 60) age-matched to these focal groups. A secondary aim was to examine the associations between the quality of group relationships and severity of eating disorder and depression symptoms in patients; and depression symptoms in carers. Participants completed the online Social Identity Mapping Tool, which was used to measure the quantity and quality of social group memberships (e.g., number of social groups, number of groups rated 'highly positive'). Participants also completed self-report measures of clinical symptoms. Compared to controls, patients reported fewer social groups when eating disorder-related groups were included, and significantly fewer social groups, and community groups in particular, when eating disorder-related groups were excluded. Number of positive groups was negatively associated with severity of eating disorder and depression symptoms in patients when eating disorder-related groups were excluded. Carers reported fewer groups overall, fewer family groups, and fewer positive and supportive groups compared to healthy controls. There was a weak association between the number of positive groups and the severity of depression symptoms in carers. Positive group memberships might play a protective role towards developing more severe eating disorder and depression symptoms.

Exploring the ways in which COVID-19 and lockdown has affected the lives of adult patients with anorexia nervosa and their carers.

OBJECTIVE: This qualitative study explores the ways in which the coronavirus disease 2019 (COVID-19) pandemic and associated lockdown measures have affected the lives of adult patients with anorexia nervosa (AN) and their carers. METHOD: Semi-structured interviews were conducted with patients with AN (n = 21) and carers (n = 28) from the start of UK Government imposed lockdown. Data related directly to the impact of lockdown and COVID-19 were analysed using thematic analysis. RESULTS: Four broad themes were identified for patients and carers separately. Patients experienced: 1. reduced access to eating disorder (ED) services; 2. disruption to routine and activities in the community; 3. heightened psychological distress and ED symptoms; 4. increased attempts at self-management in recovery. Carer themes included: 1. concern over provision of professional support for patients; 2. increased practical demands placed on carers in lockdown; 3. managing new challenges around patient wellbeing; 4. new opportunities. CONCLUSIONS: Reduced access to ED services, loss of routine and heightened anxieties and ED symptoms resulting from COVID-19 and lockdown measures presented challenges for patients and carers. Increased remote support by ED services enabled the continuation of treatment and self-management resources and strategies promoted self-efficacy in both groups.

Impulsivity, Emotional Dysregulation and Executive Function Deficits Could Be Associated with Alcohol and Drug Abuse in Eating Disorders.

BACKGROUND: Empirical data suggests a high comorbid occurrence of eating disorders (EDs) and substance use disorders (SUDs), as well as neurological and psychological shared characteristics. However, no prior study has identified the neuropsychological features of this subgroup. This study examines the prevalence of alcohol and/or drug abuse (A/DA) symptoms in ED patients. It also compares the clinical features and neuropsychological performance of ED patients with and without A/DA symptoms. METHODS: 145 participants (74.5% females) with various forms of diagnosed EDs underwent a comprehensive clinical (TCI-R, SCL-90-R and EDI-2) and neuropsychological assessment (Stroop, WCST and IGT). RESULTS: Approximately 19% of ED patients (across ED subtypes) had A/DA symptoms. Those with A/DA symptoms showed more impulsive behaviours and higher levels of interoceptive awareness (EDI-2), somatisation (SCL-90-R) and novelty seeking (TCI-R). This group also had a lower score in the Stroop-words measure, made more perseverative errors in the WCST and showed a weaker learning trajectory in the IGT. CONCLUSIONS: ED patients with A/DA symptoms display a specific phenotype characterised by greater impulsive personality, emotional dysregulation and problems with executive control. Patients with these temperamental traits may be at high risk of developing a SUD.

Cognitive Interpersonal Model for Anorexia Nervosa Revisited: The Perpetuating Factors that Contribute to the Development of the Severe and Enduring Illness.

The cognitive interpersonal model was outlined initially in 2006 in a paper describing the valued and visible aspects of anorexia nervosa (Schmidt and Treasure, 2006). In 2013, we summarised many of the cognitive and emotional traits underpinning the model (Treasure and Schmidt, 2013). In this paper, we describe in more detail the perpetuating aspects of the model, which include the inter- and intrapersonal related consequences of isolation, depression, and chronic stress that accumulate in the severe and enduring stage of the illness. Since we developed the model, we have been using it to frame research and development at the Maudsley. We have developed and tested interventions for both patients and close others, refining the model through iterative cycles of model/intervention development in line with the Medical Research Council (MRC) framework for complex interventions. For example, we have defined the consequences of living with the illness on close others (including medical professionals) and characterised the intense emotional reactions and behaviours that follow. For the individual with an eating disorder, these counter-reactions can allow the eating disorder to become entrenched. In addition, the consequent chronic stress from starvation and social pain set in motion processes such as depression, neuroprogression, and neuroadaptation. Thus, anorexia nervosa develops a life of its own that is resistant to treatment. In this paper, we describe the underpinnings of the model and how this can be targeted into treatment.