The experiential perspectives of siblings and partners caring for a loved one with an eating disorder in the UK

Abstract

BackgroundCaring 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.AimsTo 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.MethodThree 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.ResultsFour 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.ConclusionsOverall, 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.

Transitions from intensive eating disorder treatment settings: qualitative investigation of the experiences and needs of adults with anorexia nervosa and their carers

“…A recent study has explored the perspective of partners and siblings in greater depth, and highlighted a vital need for additional guidance and support for these groups. 30 However, from our sample, the appeal for more support tailored to individual needs and identities was evident, particularly for male patients, carers and LGBTQ+ individuals. We aim to widen access to this research by working with individuals in underrepresented eating disorder groups and from diverse cultural and socioeconomic backgrounds, with the aim of co-creating new tools that are relevant to a wider group of people.…”

The experiences of having a sibling with an eating disorder: A systematic review of the literature

“…The analysis of these reports suggested that there needs to be a greater focus on the needs of siblings of people with EDs. Some themes were shared with family members' experiences of having a relative with other chronic illnesses and included a lack of appropriate and systemic support (Batchelor et al., 2022; Cribben et al., 2021; Fletcher et al., 2021; Frierson, 2012; Sanders et al., 2014; Sin et al., 2014), perceived societal stigma (Abrams, 2009; Fletcher et al., 2021; Frierson, 2012), and parentification (Beffel et al., 2023; Boumans & Dorant, 2018; Frierson, 2012; Lukens et al., 2004; McDaniel & Pisani, 2012).…”

Skills‐based online self‐help program for carers of people with an eating disorder (SupportED): A case series evaluation

“…Nearly all carer programs are tailored for parents of children with an ED, particularly those with AN (Binford Hopf et al, 2013; Piat et al, 2015; Truttmann et al, 2020), excluding other common ED presentations [e.g., binge‐eating disorder (BED); Deloitte Access Economics, 2011] and carer types (e.g., partners, siblings) (Batchelor et al, 2022; Fox et al, 2017). To our knowledge, only one online education program by Guo et al (Guo et al, 2020) has been evaluated for carers of loved ones with a range of ED diagnoses, including BED and Other Specified Feeding or Eating Disorder (OSFED).…”