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Research note

SEDIG media hw. 29th Mar 2017 Sedig News

The wellbeing of carers of people with severe and enduring eating disorders (SEED). 

Author: Dr Stephen Linacre, Clinical Psychologist  

In the past, a blame culture was developed around eating disor-ders and anecdotally I know many parents have felt responsible for their loved ones eating difficulties. The real fact is that an eating disorder develops because of many factors. Relationships are important but are no means the only cause. I decided to conduct my doctoral research on carers of people with eating disorders so I can assist carers to feel more empowered and to understand why people with eating disorders behave in the ways that they do. I focussed on carers generally but also compared carers depending on how long they had been in their caring role. Below is my abstract of the research, but the full thesis is available at the below link.

http://etheses.whiterose.ac.uk/2030/



Introduction: Research on carers of people with eat-ing disorders (ED) is limited and on carers of people with severe and enduring eating disorders (SEED) al-most 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 peo-ple with other long-term conditions. The Stress Proc-ess 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 care giv-ing (ECI), perceived caregiver competence (MoCC).

Results: Carers of people with SEED were not signifi-cantly different on reported wellbeing to the whole sample of carers of people with ED. However, carers of people with ED reported significantly poorer wellbe-ing 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. Differ-ences in reported positive experiences of care giving were identified.

Discussion: The mental wellbeing of carers of people with SEED and ED appears poorer than carers of other conditions. Fur-ther 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 care giving are addressed in workshops and support groups. Below are the clinical implications of my research. These are taken from the thesis itself. It is apparent that skills-based work-shops for carers of people with ED are needed more widely across the UK. I have recently set up a petition which you can sign at the below link:

http://www.change.org/petitions/department-of-health-empowering-families-workshops-to-carers-of-people-with-eating-disorders 

Clinical implications:  The main observation in this study is that carers’ per-ceptions 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 psycho education about the nature of ED helpful, particularly those in the early stages of their care giving role. 

Sepulveda et al. (2008) conducted a six ses-sion skills-based workshop with carers of people with ED based on the “Maudsley Method”. Specialist skills such as motiva-tional 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 care giving experiences were significantly reduced following this interven-tion. B-eat (the national ED charity) are now aiming to roll out these workshops (project called “Empowering Families”) to carer sup-port groups across the UK in the hope that similar results can be obtained. On the basis of the cur-rent 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 activi-ties 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 posi-tive experiences of care giving. Workshops for carers could help carers to reflect on and share positive experi-ences and offer suggestions to how carer and recipient relationships can be enhanced. Improving the relation-ship can potentially facilitate recovery. Expressed emo-tion in carers of people with ED can be high (Zabala et al.,2009),  which can be detrimental to carers.

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 care giving 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 communica-tion; reduce levels of expressed emotion; increase their social functioning; share positive care giving experi-ences; become less isolated and develop ways to chal-lenge their thoughts about dependency. Support group facilitators should be mindful that male carers and car-ers of people with SEED may particularly benefit from the sharing of positive care giving 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 re-peated 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. 


REFERENCES:

Pearlin, L., Mullan, J., Semple, S., & Skaff, M. (1990). Care giving and the stress process: An overview of concepts and their measures. The Gerontologist, 30(5), 583.
Sepulveda, A. R., Lopez, C., Todd, G., Whitaker, W., & Treasure, J. (2008). An examination of the impact of “the Maudsley eating disorder collaborative care skills workshops” on the well being of carers. Social Psychiatry and Psychiatric Epidemiology, 43(7), 584-591.
Sepulveda, A. R., Todd, G., Whitaker, W., Grover, M., Stahl, D., & Treasure, J. (2010). Expressed emotion in relatives of patients with Eating Disorders following skills training pro-gram. International Journal of Eating Disorders, 43(7), 603-610.
Zabala, M. J., Macdonald, P., & Treasure, J. (2009). Ap-praisal of care giving burden, expressed emotion and psycho-logical distress in families of people with eating disorders: A systematic review. European Eating Disorders Review, 17(5), 338-349

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