The wellbeing of carers of people with severe and enduring eating disorders (SEED) study Stephen Linacre Trainee Clinical Psychologist

Leeds Institute of Health Sciences Faculty of Medicine and Health

Introduction: Research on carers of people with eating disorders (ED) is limited and on carers of people with severe and enduring eating disorders (SEED) almost nonexistent. Nearly 40% of carers of people with ED experience clinical level mental health difficulties. The current aims investigated wellbeing in carers of people with ED and specifically, carers of people with SEED; investigated gender differences; and compared data with wellbeing studies investigating carers of people with other long-term conditions. The Stress Process Model (SPM) (Pearlin, Mullan, Semple, & Skaff, 1990) was used to better understand predictors of wellbeing.

Method: Carers (28 male, 76 female) were recruited from ED carer support groups. Carers were stratified using duration (since diagnosis) of their recipient’s ED (0-2 years, 2-6 years, over 6 years). The “over 6 years” category was classified as SEED. Comparison data were drawn from carers of people with dementia, brain injury, ED and psychosis. Standardised questionnaires measured wellbeing (SF-36), experiences of caregiving (ECI), perceived caregiver competence (MoCC), sense of personal mastery (MoPM) and expressive support (MoES).

Results: Carers of people with SEED were not significantly different on reported wellbeing to the whole sample of carers of people with ED. However, carers of people with ED reported significantly poorer wellbeing than community norms, carers of people with brain injury and dementia. Perceived dependency, carer gender and sense of personal mastery accounted for 29% of the variance in mental wellbeing scores. Differences in reported positive experiences of caregiving were identified.

Discussion: The mental wellbeing of carers of people with SEED and ED appears poorer than carers of other conditions. Further research on carers of people with SEED is needed. The SPM is a helpful framework to use. Clinical implications include ensuring that perception of dependency and the positive experiences of caregiving are addressed in workshops and support groups.

Taken from the researcher's letter of dissemination:

I am writing to let you know that I have now completed my thesis and the results of the study are available. I attach the abstract of the study.

As you were aware, I split the data from the 104 carers who participated by how long they had cared for someone with an eating disorder (ED). There were no differences in the reported wellbeing across the groups by length of care. I found that when my results were compared with previous studies investigating carers of people with other conditions, carers of people with ED reported poorer mental wellbeing. Carers of people with ED reported that their social functioning was affected and that the perception of dependency was associated with poorer wellbeing.

Another interesting finding was that carers who had been caring for a longer period of time, reported significantly fewer positive experiences of caregiving. The clinical implications of this study are described below.

Clinical implications:

The main observation in this study was that carers’ perceptions of dependency are associated with poorer mental wellbeing; therefore interventions should be put in place to attempt to reduce this perception. Carers’ negative appraisals of their role could be mediated and explored through psychological therapies such as family therapy or cognitive behavioural therapy possibly by utilising “expert service users” who have successfully completed their caring role with people recovered from ED. Carers’ whose wellbeing is negatively affected by the perception that their care recipients’ wellbeing, is dependent on them, may find psychoeducation about the nature of ED helpful, particularly those in the early stages of their caregiving role. Education about how to communicate with care recipients may also enhance the carers’ positive experiences of caregiving.

Sepulveda et al. (2008a) conducted a six session skills-based workshop with carers of people with ED based on the “Maudsley Method”. Specialist skills such as motivational interviewing techniques, alongside problem solving, goal setting and functional analysis techniques were taught to carers. They found that the carers’ levels of distress and negative caregiving experiences were significantly reduced following this intervention. B-eat (the national ED charity) are now aiming to roll out these workshops (project called “Empowering Families”) to carer support groups across the UK in the hope that similar results can be obtained. On the basis of the current results, it may also benefit carers if the perception of dependency is looked at explicitly. Carers should also be encouraged to continue their own social activities as this was found to be depleted in carers of people with ED.

The current results indicated that carers of people with SEED and male carers reported significantly fewer positive experiences of caregiving. Workshops for carers could help carers to reflect on and share positive experiences and offer suggestions to how carer and recipient relationships can be enhanced. Improving the relationship can potentially facilitate recovery. Expressed emotion in carers of people with ED can be high (Zabala et al., 2009), which can be detrimental to carers’ and recipients’ wellbeing. Sepulveda et al. (2010) have demonstrated that carer workshops that focus on education about expressed emotion and ED, and assist carers in behaviour change, can significantly reduce levels of expressed emotion. If the relationship improves it is more likely that positive experiences of caregiving will arise.

It is apparent that more carer support groups and carer training workshops are needed. ED services must coordinate or collaborate with these groups so that carers have the opportunity to, learn more about ED; improve their skills in communication; reduce levels of expressed emotion; increase their social functioning; share positive caregiving experiences; become less isolated and develop ways to challenge their thoughts about dependency. Support group facilitators should be mindful that male carers and carers of people with SEED may particularly benefit from the sharing of positive caregiving experiences.

Finally, the marketing of and the evaluation of carer support groups need to be considered. As the author visited carer support groups around the country, a repeated message was that carers found it difficult to be aware of their existence. ED services and GPs must help to signpost carers to the available support. It may also be pertinent to add the current implications around carer support to the MARSIPAN document that offers clinical guidance to practitioners working with patients with SEED.

My next objective will be to disseminate these results to conferences and research journals with the aim to improve services for carers of people with ED. However, in the meantime, you may find ways to enhance the invaluable work you do in your own groups. Support for caring for someone with an ED needs to be improved nationally.

Stephen Linacre
Trainee Psychologist
University of Leeds
umsjl@leeds.ac.uk
July 2010

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© Stephen Linacre. The research on this page of the Somerset & Wessex Eating Disorders Association web site is presented here, with thanks, with the express permission of the author. Copyright remains with the author at all times and this material may not be reproduced without the author's express consent.