Comparing carer wellbeing: implications for eating disorders

Date08 June 2015
Published date08 June 2015
AuthorStephen Linacre,Suzanne Heywood-Everett,Vishal Sharma,Andrew J. Hill
Subject MatterHealth & social care,Mental health
Comparing carer wellbeing:
implications for eating disorders
Stephen Linacre, Suzanne Heywood-Everett, Vishal Sharma and Andrew J. Hill
Dr Stephen Linacre is Clinical
Psychologist at the Leeds and
York Partnership NHS
Foundation Trust, Leeds, UK.
Dr Suzanne Heywood-Everett
is Consultant Clinical
Psychologist at the Bradford
District NHS Care Trust,
Bradford, UK.
Vishal Sharma is Research
Fellow at the Bradford
Teaching Hospitals Foundation
Trust, Bradford, UK.
Andrew J. Hill is Professor of
Medical Psychology at the
University of Leeds, Leeds, UK.
Purpose Around 50 per cent of carers of people with eating disorders (EDs) experience mental health
difficulties. The purpose of this paper is to investigate well-being of carers of people with ED and carers of
people with severe and enduring eating disorders (SEEDs).
Design/methodology/approach Carers (n ¼104) were recruited from UK support groups and stratified
using duration of the care recipients ED (0-2, 2-6, W6 years), with the W6 years category classified as
SEED. Data were compared with existing carer well-being studies of other patient groups.
Findings Carers of people with SEED were not significantly different on reported well-being to carers of
people with ED. However, carers of people with ED reported significantly less well-being than community
norms, carers of people with brain injury and of people with dementia. Specifically, poorer social functioning
was reported.
Research limitations/implications Further research on carers of people with SEED is warranted as
carers of people with SEED were not equally balanced in gender. It would be beneficial if support groups and
skill-based workshops were more available for carers.
Originality/value This is the first known study to compare carer well-being of people with SEED with
carers of other clinical populations. Further research is required to identify the needs of carers.
Keywords Eating disorders, Well-being, Carers, SEED
Paper type Research paper
The needs of carers of people with an eating disorder (ED) are becoming increasingly apparent
(Sepulveda et al., 2008). Carers can experience social isolation (Sepúlveda et al., 2012), guilt
(Kyriacou et al., 2008a) and high expressed emotion may develop within the family. This has
been linked to increased carer distress (Duclos et al., 2012) and can perpetuate ED
symptomology (Treasure et al., 2012). A recent review concluded that support for carers of
people with ED is slowly progressing but further research is needed to demonstrate what carer
support is beneficial for whom (Anastasiadou et al., 2014). Gender, culture and chronicity are
potential factors that may be associated with carer and patient outcomes.
The research literature on ED is a complex area, with variations in severity and duration of the ED,
as well as the associated co-morbidities (Robinson, 2009). For instance, Steinhausen (2002)
noted that 20 per cent of people presenting with anorexia nervosa (AN) can go on to develop a
severe and enduring form. This imposes a burden on healthcare services, the individual and their
caregiver. The term severe and enduring eating disorders(SEED) (Robinson, 2009) is
a contemporary term used in clinical settings to identify people with an ED who experience the
condition in a severe and enduring form. To date there is little consensus on the definition of
SEED (Arkell and Robinson, 2008; Bamford et al., 2014; Elbaky et al., 2014; Long et al., 2012;
Wonderlich et al., 2012). For example, six, seven and ten years duration of the illness have been
used, in addition to the number of failed treatment attempts or body mass index. Previous
Received 20 December 2014
Revised 5 April 2015
Accepted 15 April 2015
DOI 10.1108/MHRJ-12-2014-0046 VOL. 20 NO. 2 2015, pp. 105-118, © Emerald Group Publishing Limited, ISSN 1361-9322
PAG E 105

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