Clinical effectiveness of a skills training intervention for caregivers in improving patient and caregiver health following in-patient treatment for severe anorexia nervosa: pragmatic randomised controlled trial.

BACKGROUND: Families express a need for information to support people with severe anorexia nervosa. AIMS: To examine the impact of the addition of a skills training intervention for caregivers (Experienced Caregivers Helping Others, ECHO) to standard care. METHOD: Patients over the age of 12 (mean age 26 years, duration 72 months illness) with a primary diagnosis of anorexia nervosa and their caregivers were recruited from 15 in-patient services in the UK. Families were randomised to ECHO (a book, DVDs and five coaching sessions per caregiver) or treatment as usual. Patient (n=178) and caregiver (n=268) outcomes were measured at discharge and 6 and 12 months after discharge. RESULTS: Patients with caregivers in the ECHO group had reduced eating disorder psychopathology (EDE-Q) and improved quality of life (WHO-Quol; both effects small) and reduced in-patient bed days (7-12 months post-discharge). Caregivers in the ECHO group had reduced burden (Eating Disorder Symptom Impact Scale, EDSIS), expressed emotion (Family Questionnaire, FQ) and time spent caregiving at 6 months but these effects were diminished at 12 months. CONCLUSIONS: Small but sustained improvements in symptoms and bed use are seen in the intervention group. Moreover, caregivers were less burdened and spent less time providing care. Caregivers had most benefit at 6 months suggesting that booster sessions, perhaps jointly with the patients, may be needed to maintain the effect. Sharing skills and information with caregivers may be an effective way to improve outcomes. This randomised controlled trial (RCT) was registered with Current Controlled Trials ISRCTN06149665. DECLARATION OF INTEREST: J.T. is a co-author of the book used in the ECHO intervention and receives royalties. COPYRIGHT AND USAGE: © The Royal College of Psychiatrists 2015. This is an open access article distributed under the terms of the Creative Commons Non-Commercial, No Derivatives (CC BY-NC-ND) licence.

Carers' assessment, skills and information sharing (CASIS) trial: a qualitative study of the experiential perspective of caregivers and patients.

BACKGROUND: Families express a need for guidance in helping their loved ones with anorexia nervosa (AN). Guided self-help interventions can offer support to caregivers. METHODS: One hundred seventy-eight adult AN patients and their caregivers were recruited from 15 UK treatment centres. Families were randomized to carers' assessment, skills and information sharing (C) intervention + treatment as usual (TAU) or TAU alone. Feedback forms were sent at 6 months post-discharge and, if not returned, at 12 months. One hundred two (57%) patient forms (n = 50TAU; n = 52C) and 115 (65%) caregiver forms (n = 60TAU; n = 55C) were returned. Two researchers coded data blind, using thematic analysis. RESULTS: (i) Caregivers and patients express a need for post-discharge support. (ii) Patients identify helpful and unhelpful support strategies, useful for developing future interventions. (iii) Patients could identify positive caregiver behaviour changes targeted in intervention. (iv) Guided self-help may benefit caregiver and sufferer, post-discharge. CONCLUSION: Caregiver interventions can be a useful tool that will improve the cost effectiveness of inpatient treatment by enhancing the well-being of caregivers and patients.

Confirmatory factor analysis for two questionnaires of caregiving in eating disorders.

Objective: Caring for someone diagnosed with an eating disorder (ED) is associated with a high level of burden and psychological distress which can inadvertently contribute to the maintenance of the illness. The Eating Disorders Symptom Impact Scale (EDSIS) and Accommodation and Enabling Scale for Eating Disorders (AESED) are self-report scales to assess elements of caregiving theorised to contribute to the maintenance of an ED. Further validation and confirmation of the factor structures for these scales are necessary for rigorous evaluation of complex interventions which target these modifiable elements of caregiving. Method: EDSIS and AESED data from 268 carers of people with anorexia nervosa (AN), recruited from consecutive admissions to 15 UK inpatient or day patient hospital units, were subjected to confirmatory factor analysis to test model fit by applying the existing factor structures: (a) four-factor structure for the EDSIS and (b) five-factor structure for the AESED. Results: Confirmatory factor analytic results support the existing four-factor and five-factor structures for the EDSIS and the AESED, respectively. Discussion: The present findings provide further validation of the EDSIS and the AESED as tools to assess modifiable elements of caregiving for someone with an ED.

Disseminating skills to carers of people with eating disorders: an examination of treatment fidelity in lay and professional carer coaches.

Family members of people with eating disorders (EDs) have high levels of stress and can use maladaptive methods of coping. We have developed an intervention, using motivational interviewing (MI) strategies that trains lay and professional carer coaches (CCs) to support carers of adolescents with EDs to use more adaptive coping procedures. The aim of this study is to measure treatment integrity in coaches with either academic or lived experience. Eleven coaches were trained and supervised by an expert trainer and an 'expert by experience' trainer. Six of the coaches had prior training in clinical work and/or psychology and five had personal experience of supporting a loved one with an ED. Two audio-taped sessions (Sessions 3 and 7) from each family coached (n = 22) were assessed for fidelity to MI. Half the sessions (50% n = 11) had a Motivational Interviewing Treatment Integrity global score above the suggested cut-off for recommended competency. Prior clinical training was related to higher treatment fidelity and experiential training (having coached a greater number of families) improved treatment fidelity in the lay carer group. These preliminary findings suggest that: "lay CCs" can be trained to deliver an intervention based on MI. Further exploration of a more effective means of training, monitoring and supervision is required to maximise the quality of the intervention.

A multi-centre cohort study of short term outcomes of hospital treatment for anorexia nervosa in the UK.

BACKGROUND: Individual, family and service level characteristics and outcomes are described for adult and adolescent patients receiving specialist inpatient or day patient treatment for anorexia nervosa (AN). Potential predictors of treatment outcome are explored. METHOD: Admission and discharge data were collected from patients admitted at 14 UK hospital treatment units for AN over a period of three years (adult units N = 12; adolescent N = 2) (patients N = 177). RESULTS: One hundred and seventy-seven patients with a severe and enduring illness with wide functional impairment took part in the study. Following inpatient care, physical improvement was moderate/good with a large increase in BMI, although most patients continued to have a clinical level of eating disorder symptoms at discharge. The potentially modifiable predictors of outcome included confidence to change, social functioning and carer expressed emotion and control. CONCLUSIONS: Overall, the response to inpatient treatment was modest particularly in the group with a severe enduring form of illness. Adolescents had a better response. Although inpatient treatment produces an improvement in physical health there was less improvement in other eating disorder and mood symptoms. As predicted by the carer interpersonal maintenance model, carer behaviour may influence the response to inpatient care, as may improved social functioning and confidence to change.

Carers' assessment, skills and information sharing: theoretical framework and trial protocol for a randomised controlled trial evaluating the efficacy of a complex intervention for carers of inpatients with anorexia nervosa.

Experienced Carers Helping Others (ECHO) is a guided self-help intervention for carers of people with eating disorders to reduce distress and ameliorate interpersonal maintaining factors to improve patient outcomes. The aim of this paper is to describe the theoretical background and protocol of a randomised controlled trial that will establish whether ECHO has a significant beneficial effect for carers and the person they care for. Individuals with anorexia nervosa and carers will be recruited from eating disorder inpatient/day patient hospital services in the UK. Primary outcomes are time until relapse post-discharge (patient) and distress (carer) at 12 months post-discharge. Secondary outcomes are body mass index, eating disorder symptoms, psychosocial measures and health economic data for patients and carers. Carers will be randomised (stratified by site and illness severity) to receive ECHO (in addition to treatment as usual) or treatment as usual only. Potential difficulties in participant recruitment and delivery of the intervention are discussed.

Caregiving and coping in carers of people with anorexia nervosa admitted for intensive hospital care.

OBJECTIVE: The aim of the study was to examine how carers cope practically and emotionally with caring for individuals with anorexia nervosa who require intensive hospital care. METHOD: This study explores objective burden (time spent with caregiving and number of tasks), subjective burden (psychological distress), and social support in a sample of parents (n = 224) and partners (n = 28) from a consecutive series of patients (n = 178) admitted to inpatient units within the United Kingdom. RESULTS: Most time was spent providing emotional support and less with practical tasks. Time spent with caregiving was associated with carer distress and was fully mediated by carer burden. This was ameliorated by social support. Partners received minimal support from others, and we found similar levels of burden and distress for mothers and partners. DISCUSSION: The data indicate that professional and social support alleviates carer distress and may be of particular value for partners who are more isolated than parents. The data also suggest that time spent with practical support may be of more value than emotional support.