The National Eating Disorders Collaboration collects and provides the latest evidence based research and information available on eating disorders from Australia and around the world. The topics included in our Research and Resources section are wide ranging and recognise the physical, social and emotional aspects and the broad spectrum of eating disorders. All information has been sourced from the NEDC Resources Review, NEDC Evidence Review, books, fact sheets, treatment guidelines, manuals or programs, reports, web-based programs, multimedia, academic peer reviewed journals and individuals working within the eating disorders sector.
Each month in the e-Bulletin we will be highlighting some of the research and information uploaded regularly on our website.
The burden of caregiving tackled with Collaborative Care Skills Training
Caring for someone with an eating disorder is an enduring and intense process associated with high levels of stress, burden, psychological, and physical strain. Because the age of onset of an eating disorder is typically adolescence or early adulthood, a person with an eating disorder often relies upon a carer such as the parent for significant assistance with their recovery. This often leads to high levels of pressure placed on family relationships, interpersonal dynamics, and the coping resources of the carer.
Research has shown that caregivers of eating disorder patients have higher levels of anxiety, depression, and perceived caregiving burden than caregivers of patients with other psychiatric illnesses. One study by Zabala, McDonald, & Treasure (2009) showed that of those caring for someone with anorexia nervosa, 50% exhibited high levels of anxiety and depression. This in turn can lead to unhelpful attitudes, behaviours, and emotional reactions on the part of the carer, which can have an adverse impact on the patient, and a vicious cycle develops.
How the burden of caregiving is perceived is influenced by a number of variables, including the caregivers’ socio-demographic characteristics, the clinical characteristics of the patient’s illness, and the social support and personal resources available to the caregiver. Divorce, symptoms of anxiety or depression, a low level of education, a high level of concern about the patient’s eating disorder, along with poor physical quality of life in the patient have been found to be associated with a greater perceived burden of caregiving (Padierna, et al., in press).
One way to reduce family distress and suffering can be to identify modifiable elements associated with specific difficulties present in the caregiver’s role. A better understanding of those things that they can change would provide caregivers with alternative ways of coping through family-based interventions.
To do this, the Maudsley Collaborative Caring model has been developed, which teaches carers the skills required to optimise the management of severe eating disorders (Sepulveda, et al., 2011). This programme involves modules on coping, medical risk, understanding change, communication, emotion processing, problem solving, interpersonal relationships and managing eating and other difficult behaviours, supplemented with skills-based workshops.
Evidence has demonstrated the effectiveness of the workshops in the UK where the model was developed . A pilot study has recently been conducted to determine if the workshops can be taught in an Australian setting, by facilitators trained in the delivery of the programme, with similar positive outcomes (Pepin & King, in press).
Overall results of the study indicate that specific knowledge and coping skills learnt through structured family interventions improve the caregiving experience and significantly reduce psychological distress, levels of expressed emotion, and aspects of perceived burden. There was also a trend towards increased confidence in the carers that their loved one could change.
The other important outcome of the pilot study was that it demonstrated the content of the workshop is transferrable to a different context (i.e. UK to Australia). It also confirmed that a brief yet thorough training in the content and delivery of the workshops coupled with a solid understanding of its foundations and core concepts such as readiness for change is necessary to support carers throughout their participation in the workshops.
Carers are the most important providers of support in the public health system. If they also get the informational and practical support they require it seems plausible that not only will their distress decrease, but they will be able to be more effective providers of support for the person they are caring for.
The NEDC Clearinghouse contains a number of research articles focusing on family and carer issues including the Collaborative Care Model highlighted in this article. If you are interested in more information and resources pertaining to this subject check out the Carers Guide to the NEDC Website later in this e-Bulletin or explore our comprehensive Research and Resources section.
The following are links to organisations that offer support workshops to carers:
Eating Disorders Victoria’s Building Hope is a six-week, skills-based learning program comprising 6 two-hour sessions for parents, siblings (15 years and over), partners, other family members and friends of a loved one with an eating disorder.
The Eating Disorder Outreach Service (EDOS, Queensland) is delivering parent/carer skills based training for families affected by eating disorders.
Back to top