Pamela Macdonald

Appraisal of caregiving burden, expressed emotion and psychological distress in families of people with eating disorders: A systematic review

The purpose of this review is to appraise the literature regarding psychological distress, burden and expressed emotion (EE) in caregivers of people with eating disorders (EDs). Electronic databases were searched up until October 2008. Selected studies contained carers of people with ED and employed one measure of burden, EE or psychological distress. Twenty studies were identified measuring psychological distress burden and EE. Most of the studies examined these features in families of anorexic patients. The majority of the studies found high levels of psychological distress, burden and EE in this population. Only few studies included a control group. Carers of people with ED presented high levels of psychological distress and burden. ED carers tend to have levels of EE resembling that found in families of depressed patients, rather than schizophrenic patients. There is some evidence (particularly for EE) that these factors can impact the outcome of ED.

An Examination of the Impact of the Maudsley Collaborative Care Skills Training Workshops on Patients with Anorexia Nervosa: A Qualitative Study

PURPOSE The objective of this study was to examine the experience of adult inpatients with Anorexia Nervosa (AN) whose carers had taken part in the Collaborative Care skills training workshops. Workshops were offered to carers of someone with an eating disorder (ED) to address carer distress and proposed interpersonal maintaining factors. METHOD Semi-structured interviews were conducted probing the sufferers perception of the workshops, their experience of their carers attending the workshops and any associated behaviour change. RESULTS Qualitative data were analysed using Interpretative Phenomenological Analysis (IPA). Key findings suggest that patients hold positive attitudes towards involving carers in their care and that the skills training approach can have positive effects for AN adult inpatients. Positive effects are congruent with workshop aims supporting fidelity of the skills based training. Negative effects and ideas for improvements were examined. CONCLUSION Involving carers in skills based Collaborative Care workshops based on an interpersonal maintenance model of EDs may be beneficial for adult inpatients with AN and future research is warranted to extend these findings.

An examination of autism spectrum traits in adolescents with anorexia nervosa and their parents

BackgroundThere may be a link between anorexia nervosa and autism spectrum disorders. The aims of this study were to examine whether adolescents with anorexia nervosa have autism spectrum and/or obsessive-compulsive traits, how many would meet diagnostic criteria for autism spectrum disorder, and whether these traits are shared by parents.MethodsA total of 150 adolescents receiving outpatient treatment for anorexia nervosa or subthreshold anorexia nervosa and their parents completed the autism spectrum disorder and eating disorder sections of the Development and Well-being Assessment. Patients also completed the Children Yale-Brown Obsessive-Compulsive Scale and other measures of psychiatric morbidity, and parents completed the short Autism Quotient and Obsessive-Compulsive Inventory Revised.ResultsAdolescents with anorexia nervosa had a below average social aptitude (19% below cut-off) and high levels of peer relationship problems (39% above cut-off) and obsessive-compulsive symptoms (56% above cut-off). Six cases (4%, all females) were assigned a possible (n = 5) or definite (n = 1) diagnosis of autism spectrum disorder. Parental levels of autism spectrum and obsessive-compulsive traits were within the normal range.ConclusionsThis study suggests that adolescents with anorexia nervosa have elevated levels of autism spectrum traits, obsessive-compulsive symptoms, and a small proportion fulfil diagnostic criteria for a probable autism spectrum disorder. These traits did not appear to be familial. This comorbidity has been associated with a poorer prognosis. Therefore, adaptation of treatment for this subgroup may be warranted.Trial registrationControlled-trials.com: ISRCTN83003225. Registered on 29 September 2011.

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.

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

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.

Self-Help And Recovery guide for Eating Disorders (SHARED): Study protocol for a randomized controlled trial

BackgroundWe describe the theoretical rationale and protocol for Self-Help And Recovery guide for Eating Disorders (SHARED), a trial investigating whether a guided self-care intervention (Recovery MANTRA) is a useful addition to treatment as usual for individuals with anorexia nervosa. Recovery MANTRA, a 6-week self-care intervention supplemented by peer mentorship, is a module extension of the Maudsley Model of Treatment for Adults with Anorexia Nervosa and targets the maintenance factors identified by the cognitive-interpersonal model of the illness.MethodsPatients accessing outpatient services for anorexia nervosa are randomized to either treatment as usual or treatment as usual plus Recovery MANTRA. Outcome variables include change in body weight at the end of the intervention (primary) and changes in body weight and eating disorder symptoms at immediate and extended follow-up (6-months; secondary). Change is also assessed for the domains identified by the theoretical model, including motivation, hope, confidence to change, positive mood, cognitive flexibility, therapeutic alliance and social adjustment. Feedback from peer mentors is gathered to understand the impact on their own well-being of providing guidance.DiscussionResults from this exploratory investigation will determine whether a larger clinical trial is justifiable and feasible for this affordable intervention, which has potential for high reach and scalability.Trial registrationClinicalTrials.gov NCT02336841.

Collaborative Care: The New Maudsley Model

The aim of this article is to describe the rationale and practice of the New Maudsley collaborative care intervention for families of people with eating disorders. The intervention teaches carers the underpinning theory with practical examples on how to optimize their care giving, communication, and coping skills. This includes moderating high expressed emotion and reducing the tendency to accommodate and/or enable illness behaviors. Transcripts are used to give examples of this approach in action. The emerging evidence base indicates that this approach improves both carer and patient well-being and also is associated with a more efficient use of resources.

An examination of the clinical outcomes of adolescents and young adults with broad autism spectrum traits and autism spectrum disorder and anorexia nervosa: A multi centre study

OBJECTIVES To compare the clinical outcomes of adolescents and young adults with anorexia nervosa (AN) comorbid with broad autism spectrum disorder (ASD) or ASD traits. METHOD The developmental and well-being assessment and social aptitude scale were used to categorize adolescents and young adults with AN (N = 149) into those with ASD traits (N = 23), and those who also fulfilled diagnostic criteria for a possible/probable ASD (N = 6). We compared both eating disorders specific measures and broader outcome measures at intake and 12 months follow-up. RESULTS Those with ASD traits had significantly more inpatient/day-patient service use (p = .015), as well as medication use (p < .001) at baseline. Both groups had high social difficulties and poorer global functioning (strengths and difficulties questionnaire) at baseline, which improved over time but remained higher at 12 months in the ASD traits group (p = .002). However, the improvement in eating disorder symptoms at 12 months was similar between groups with or without ASD traits. Treatment completion rates between AN only and ASD traits were similar (80.1 vs. 86.5%). DISCUSSION Adolescents with AN and ASD traits show similar reductions in their eating disorder symptoms. Nevertheless, their social difficulties remain high suggesting that these are life-long difficulties rather than starvation effects.

Diabulima Through the Lens of Social Media: A Qualitative Review and Analysis of Online Blogs of People with Type 1 Diabetes Mellitus and Eating Disorders

To perform a qualitative review of online blogs authored by people self‐identifying as having Type 1 diabetes and an eating disorder or ‘diabulimia’, a term used by people with Type 1 diabetes to describe an eating disorder that is characterized by deliberate restriction of insulin to control weight.