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

<title>Abstract</title> <p> <bold>Objective:</bold> 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. <bold>Method:</bold> Semi-structured interviews were conducted with 25 parents of children and adolescents (aged 4–17 years) with ARFID or ARFID-like presentations. Participants were recruited across the UK using purposive sampling to capture variation in age, ARFID presentation and weight status. Interviews were analysed using reflexive thematic analysis. <bold>Results:</bold> Parents described ARFID as a complex medical disorder with wide-ranging physical consequences that restricted children’s daily lives. Parenting a child with ARFID involved substantial caregiving burden and high-stakes risk management, with families often balancing competing priorities around nutrition, treatment and distress. ARFID was perceived as poorly understood within healthcare, with access to support limited by service gaps and eligibility criteria. Experiences of medical monitoring varied considerably, with several parents describing difficulties accessing assessment or investigations when their child was not underweight. <bold>Discussion:</bold> 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. </p>