Caregiving and coping in carers of people with anorexia nervosa admitted for intensive hospital care

Raenker, Simone; Hibbs, Rebecca; Goddard, Elizabeth; Naumann, Ulrike; Arcelus, Jon; Ayton, Agnes; Bamford, Bryony; Boughton, Nicky; Connan, Frances; Goss, Ken; Lazlo, Bert; Morgan, John F.; Moore, Kathryn L.; Robertson, David; Schreiber-Kounine, Christa; Sharma, Sonu; Whitehead, Linette; Beecham, Jennifer; Schmidt, Ulrike; Treasure, Janet

doi:10.1002/eat.22068

Cited by 72 publications

(67 citation statements)

References 60 publications

(36 reference statements)

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“…Anastasiadou et al, 2014;Hibbs et al, 2014;Raenker et al, 2013), carers of people with ED need more support from services to understand ED, to reduce their perception of guilt and caregiver burden, provide them with hope, and help develop the skills to interact with their care recipient. The current research adds support to this area and also suggests that services need to look at specific demographics of carers (i.e.…”

Section: Discussionmentioning

confidence: 98%

“…A review of previous research indicated that a number of factors may influence carer well-being when caring for an individual with an ED, e.g. perceived level of burden (Gonzalez et al, 2012); being the primary caregiver (Sepúlveda et al, 2012); amount of contact time (Raenker et al, 2013) and gender of the caregiver (Kyriacou et al, 2008b). There was not a measure already in place to capture this information.…”

Section: Methodsmentioning

confidence: 97%

“…To date, there is limited information on illness duration in carers of people with ED, perhaps due to a lack of longitudinal studies (Gonzalez et al, 2012). However, research has identified that the length of time spent with the care recipient can influence carer burden (Raenker et al, 2013), and burden is linked to poorer carer well-being Zabala et al, 2009). It is reported that parents of people with ED can experience increased levels of hostility as the duration of care increases (Ravi et al, 2009).…”

mentioning

confidence: 96%

“…Certainly, a proportion of carers experience their own mental health difficulties (Graap et al, 2008;Whitney et al, 2007;Zabala et al, 2009). The main factors predictive of their distress were the perceived dependency of the patient and the stigma associated with ED (Whitney et al, 2007), the perceived level of burden in caregiving (Raenker et al, 2013), and the primary caregiver's perception of being responsible for nutrition (Sepúlveda et al, 2012). Carers of people with ED who purge are reported to have an increased risk of psychopathological distress .…”

mentioning

confidence: 98%

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Comparing carer wellbeing: implications for eating disorders

Linacre

Heywood-Everett

Sharma

et al. 2015

Mental Health Review Journal

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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 ¼ 104) were recruited from UK support groups and stratified using duration of the care recipient's 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.

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Section: Discussionmentioning

confidence: 98%

Section: Methodsmentioning

confidence: 97%

mentioning

confidence: 96%

mentioning

confidence: 98%

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Comparing carer wellbeing: implications for eating disorders

Linacre

Heywood-Everett

Sharma

et al. 2015

Mental Health Review Journal

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“…It is provided to people with AN by parents, carers and partners. The analysis of data collected in the CASIS study (see Chapter 6) shows that up to three-quarters of carers spent nearly a full day per week providing ED-related care, 406 with potential impacts not only on their health and well-being but also on their capacity to engage in paid employment.…”

Section: Resultsmentioning

confidence: 99%

Treatment of anorexia nervosa: a multimethod investigation translating experimental neuroscience into clinical practice

Schmidt

Sharpe

Bartholdy

et al. 2017

Programme Grants Appl Res

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BackgroundAnorexia nervosa (AN) is a severe psychiatric condition and evidence on how to best treat it is limited.ObjectivesThis programme consists of seven integrated work packages (WPs) and aims to develop and test disseminable and cost-effective treatments to optimise management for people with AN across all stages of illness.MethodsWP1a used surveys, focus groups and a pre–post trial to develop and evaluate a training programme for school staff on eating disorders (EDs). WP1b used a randomised controlled trial (RCT) [International Standard Randomised Controlled Trial Number (ISRCTN) 42594993] to evaluate a prevention programme for EDs in schools. WP2a evaluated an inpatient treatment for AN using case reports, interviews and a quasi-experimental trial. WP2b used a RCT (ISRCTN67720902) to evaluate two outpatient psychological therapies for AN. WP3 used a RCT (ISRCTN06149665) to evaluate an intervention for carers of inpatients with AN. WP4 used actimetry, self-report and endocrine assessment to examine physical activity (PA) in AN. WP5 conducted a RCT (ISRCTN18274621) of an e-mail-guided relapse prevention programme for inpatients with AN. WP6 analysed cohort data to examine the effects of maternal EDs on fertility and their children’s diet and growth. WP7a examined clinical case notes to explore how access to specialist ED services affects care pathways and user experiences. Finally, WP7b used data from this programme and the British Cohort Study (1970) to identify the costs of services used by people with AN and to estimate annual costs of AN for England.ResultsWP1a: a brief training programme improved knowledge, attitudes and confidence of school staff in managing EDs in school. WP1b: a teacher-delivered intervention was feasible and improved risk factors for EDs in adolescent girls. WP2a: both psychological therapies improved outcomes in outpatients with AN similarly, but patients preferred one of the treatments. WP2b: the inpatient treatment (Cognitive Remediation and Emotional Skills Training) was acceptable with perceived benefits by patients, but showed no benefits compared with treatment as usual (TAU). WP3: compared with TAU, the carer intervention improved a range of patient and carer outcomes, including carer burden and patient ED symptomatology. WP4: drive to exercise is tied to ED pathology and a desire to improve mood in AN patients. PA was not increased in these patients. WP5: compared with TAU, the e-mail-guided relapse prevention programme resulted in higher body mass index and lower distress in patients at 12 months after discharge. WP6: women with an ED had impaired fertility and their children had altered dietary and growth patterns compared with the children of women without an ED. WP7a: direct access to specialist ED services was associated with higher referral rates, lower admission rates, greater consistency of care and user satisfaction. WP7b: the annual costs of AN in England are estimated at between £45M and £230M for 2011.ConclusionsThis programme has produced evidence to inform future intervention development and has developed interventions that can be disseminated to improve outcomes for individuals with AN. Directions for future research include RCTs with longer-term outcomes and sufficient power to examine mediators and moderators of change.Trial registrationCurrent Controlled Trials ISRCTN42594993, ISRCTN67720902, ISRCTN06149665 and ISRCTN18274621.FundingThis project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full inProgramme Grants for Applied Research; Vol. 5, No. 16. See the NIHR Journals Library website for further project information.

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Empirical examination of the interpersonal maintenance model of anorexia nervosa

Goddard

Salerno

Hibbs

et al. 2013

Intl J Eating Disorders

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Caregiving and coping in carers of people with anorexia nervosa admitted for intensive hospital care

Abstract: The data indicate that professional and social support alleviates carer distress and may be of particular value for partners who are more isolated than parents. The data also suggest that time spent with practical support may be of more value than emotional support.

Cited by 72 publications

References 60 publications

Comparing carer wellbeing: implications for eating disorders

Comparing carer wellbeing: implications for eating disorders

Treatment of anorexia nervosa: a multimethod investigation translating experimental neuroscience into clinical practice

Empirical examination of the interpersonal maintenance model of anorexia nervosa

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