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Caring for a loved one with an eating disorder typically comes with a multitude of challenges, yet siblings and partners are often overlooked. It is important to understand if current clinical guidance for supporting carers are effective and being utilised for these groups, to help meet their needs.
Aims
To identify the experiential perspectives of siblings and partners of a loved one with an eating disorder compared with guidance for improving the adequacy of support provided to carers published by Beat and Academy for Eating Disorders.
Method
Three online focus groups were held for ten siblings and five partners from across the UK (12 females and three males). Carers had experience of caring for a loved one with anorexia nervosa (13 carers) or bulimia nervosa (two carers), across a range of therapeutic settings. Focus group transcriptions were analysed with thematic analysis.
Results
Four key themes were identified: (a) role-specific needs, (b) challenges encountered by siblings and partners, (c) generic needs and helpful strategies or approaches, and (d) accounts of service provision and family support.
Conclusions
Overall, the majority of experiences reported by siblings and partners did not meet the published guidance. Consequently, clinical practice recommendations were identified for services, alongside the charity sector, to take a proactive approach in detecting difficulties, providing skills training and emotional/practical support, adapting/tailoring peer support groups and supporting online facilitation. Our findings part-informed the design of our national online survey on loved ones’ experiences of care in eating disorders.
Parents of a loved one with an eating disorder report high levels of unmet needs. Research is needed to understand whether clinical guidance designed to improve the experience of parents has been effective.
Aims
To establish parents’ experiential perspectives of eating disorder care in the UK, compared with guidance published by Beat, a UK eating disorders charity, and Academy for Eating Disorders, the leading international eating disorders professional association.
Method
A total of six focus groups (one online and five face-to-face) were held throughout the UK. A total of 32 parents attended. All participants were parents of a loved one with a diagnosis of anorexia nervosa or atypical anorexia nervosa (mean age 22 years; mean duration of illness 4.4 years). Focus groups were transcribed, and the text was analysed with an inductive approach, to identify emerging themes.
Results
Four key themes were identified: (a) impact of eating disorder on one's life, (b) current service provisions, (c) navigating the transition process and (d) suggestions for improvement.
Conclusions
Current experiences of parents in the UK do not align with the guidelines published by Beat and Academy of Eating Disorders. Parents identified a number of changes that healthcare providers could make, including improved information and support for parents, enhanced training of professionals, consistent care across all UK service providers, policy changes and greater involvement of families in their loved one's care. Findings from this project informed the design of a national web-survey on loved ones’ experience of care in eating disorders.
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