Obtaining an Avoidant Restrictive Food Intake Disorder diagnosis in The UK for Individuals with Intellectual and Developmental Disabilities: A Qualitative Study of Families’ Experiences

Abstract

Background The prevalence of Avoidant Restrictive Food Intake Disorder (ARFID) is generally low among the eating and feeding disorders population. The complexity of the diagnosis, along with its potential comorbidities (e.g., Intellectual and Developmental Disabilities), had led to difficulties in diagnosing ARFID, with limited support and treatment available. This study therefore asked families with lived experience of the ARFID diagnostic process and their access to support for diagnostic evaluation and understandings of available support. Method Data was collected through a qualitative approach using online semi-structured interviews investigating eight participants’ experiences of their children undergoing the ARFID diagnostic process and their access to support. Responses were subjected to thematic analysis. Results From thematic analysis, three major themes were identified: the ups and downs of diagnosis, pushing for support, and looking into the future. Conclusions Participants’ experiences surrounded the ‘lucky’ encounters with the ARFID diagnosis, where the limited support was emphasised. The findings highlighted the need for an improved ARFID diagnostic process for better awareness and support availability for families living with ARFID. Recommendations from study findings were provided for readers and researchers.