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)

Abstract

Objective

Avoidant 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.

Method

Qualitative 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).

Results

Four 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.

Conclusion

Effective 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.

Plain Language Summary

Avoidant Restrictive Food Intake Disorder (ARFID) is an eating disorder where children and young people avoid or restrict food, which can affect nutrition, growth, health, and everyday life. This study explored the experiences of caregivers whose children accessed a specialist tertiary feeding service. Caregivers took part in interviews about their experiences of seeking support, receiving treatment, and navigating healthcare systems. The interviews were analysed to identify common themes across experiences. Caregivers described significant emotional, practical, and financial challenges linked to caring for a child with ARFID. Many reported difficulties accessing support and experienced delays, limited understanding of ARFID among professionals, and disjointed care across services. They also described feeling misunderstood or judged by others. Caregivers valued compassionate clinicians, collaborative communication, coordinated care, and opportunities for peer support. The findings highlight both the benefits of specialist feeding services and the challenges families experience when trying to access support. The study suggests that improving professional awareness of ARFID, increasing coordination between services, and providing earlier access to specialist support may improve experiences for children, young people, and caregivers.