“We are given this huge responsibility”: Parents’ experiences of physical health risk and medical care in ARFID

Avoidant Restrictive Food Intake Disorder (ARFID) is associated with significant physical health complications, yet little is known about how families experience and manage these risks or access medical care. This study aimed to explore parents' experiences of physical health complications, medical risk, and healthcare in children and adolescents with ARFID. Semi-structured interviews were conducted with 25 parents of children and adolescents (aged 4-17 years) with a formal diagnosis of ARFID or who met DSM-5 criteria for ARFID at study screening without a formal diagnosis. Participants were recruited across the UK using purposive sampling to capture variation in age, ARFID presentation and parent-reported weight status. Interviews were analysed using reflexive thematic analysis. Four themes were developed: Living in a Body with ARFID; Parenting on the edge: responsibility, guilt, and impossible trade-offs; Seeking Help in a System with limited knowledge of ARFID; and Care in Practice. Together, these themes captured parents' experiences of ARFID-related physical health concerns as extending beyond individual symptoms, shaping children's daily lives while placing substantial responsibility on parents to manage risk and navigate variable access to ARFID-informed healthcare. Parents perceived high levels of responsibility for managing physical health risk in ARFID amid limited clinical oversight. Findings highlight the importance of clinician-led assessment of physical health concerns that extends beyond weight alone, alongside accessible ARFID-informed multidisciplinary care.