The experience of Avoidant/Restrictive Food Intake Disorder: a survey of diagnosis, treatment, and care in Australia

The experience of the Australian healthcare system regarding diagnosis, treatment, management, and care was explored for adults with Avoidant/Restrictive Food Intake Disorder (ARFID) and their family and caregivers. Twenty-nine adults with ARFID and 24 parents completed an online survey asking about their subjective experiences with the Australian healthcare system. The survey data were analysed using thematic analysis, while ARFID characteristics were analysed using frequencies and a secondary analysis of the congruence of perceptions. All participants met diagnostic criteria for ARFID as per the Pica, ARFID, and Rumination Disorder Interview - ARFID Questionnaire. The themes identified were healthcare inequalities, diagnostic overshadowing of ARFID, negative relationships with food/eating, and negative social impacts. A tone of hopelessness was present throughout the responses. The beliefs of the two groups were largely congruent in their negative perceptions, with differences in the degree of negativity regarding views on access to treatment and health professionals' knowledge. The survey responses identified perceptions of significant barriers in the Australian healthcare system and call for improved clinician knowledge and access to treatment and care.