|The wellbeing of carers of people with
severe and enduring
eating disorders (SEED) study
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
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
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
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
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
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
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
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.
University of Leeds
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