Caring for a loved one with avoidant/restrictive food intake disorder: caregivers' experiences and the role of peer support

Edwina Williams, Lyza Norton, Isabel Krug

Research output: Contribution to journalArticlepeer-review

Abstract

Objectives: Interventions for eating disorder (ED) carers can improve carers' wellbeing and outcomes for their loved one with an ED. However, the effectiveness of peer support groups for Avoidant/Restrictive Food Intake Disorder (ARFID) carers, facilitated by individuals with lived experience, has not been established. This qualitative study examined carers' experiences of caring for a loved one with ARFID and participating in the ARFID carer support group run by Eating Disorders Families Australia (EDFA). Method: 20 ARFID carers completed an online survey and semi-structured interview. Interviews were analysed using reflective thematic analysis. Results: Five themes and 15 subthemes were identified. Carers reported substantial burden and psychological distress (Theme 1), alongside limited knowledge about ARFID among family members and health professionals (Theme 2). The group reduced loneliness and validated caregiving approaches, although challenges arose from dominant members and exposure to distressing stories (Theme 3). Information sharing and facilitation by individuals with lived experience were highly valued (Theme 4). Finally, participation was perceived to positively influence the loved one with ARFID and broader family functioning (Theme 5). Discussion: These findings underscore the unique challenges faced by ARFID carers and the importance of peer-led support groups in meeting psychological and educational needs. Future research should examine their long-term impact and broader family support needs.

Original languageEnglish
Number of pages14
JournalEuropean Eating Disorders Review
DOIs
Publication statusE-pub ahead of print (In Press) - 2026

Keywords

  • ARFID
  • carers
  • eating disorders
  • lived experience
  • qualitative
  • support groups

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