Peer-reviewed article
A Taste of Progress: A Qualitative Evaluation of Caregiver Experiences in a Tertiary Feeding Disorder Service for Young People With Avoidant Restrictive Food Intake Disorder (ARFID).
Zara Smalley, Charlotte Burton, Nadia Micali, Danielle Lambert ·
Summary
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Abstract
ObjectiveAvoidant Restrictive Food Intake Disorder (ARFID) remains under researched and there are currently no National Institute for Health and Care Excellence (NICE) guidelines, the UK body that produces national, evidence-based clinical guidelines for treatment. Our study aims to capture the qualitative experiences of carers of young people with ARFID who have received treatment, aiming to understand caregivers' experiences of caring for a young person with ARFID and what their experience of treatment is like.MethodQualitative semi-structured interviews with 11 caregivers of young people receiving treatment in a national tertiary feeding and eating disorder service were conducted. Thematic analysis was used to analyse interview transcripts, following Braun and Clarke's six-phase approach (2006, 2022a, 2022b).ResultsFour overarching themes were developed: Care with Constant Concern: the emotional and practical impact of caring for a child with ARFID; Navigating Fragmented Systems: delays, knowledge gaps, and access barriers; Balancing Survival and Safety: the complexities of implementing feeding interventions; and Building Strength Through Shared Experiences: the value of communication and collaborative support within treatment.ConclusionEffective management of ARFID requires clear care pathways, integrated multidisciplinary plans, and recognition of caregiver burden. Services should balance physical safety with strategies to promote oral exposure while adopting flexible, child-led approaches. Future research must amplify young people's voices and broaden caregiver perspectives to inform responsive, evidence-based interventions.