Parental Experiences of Accessing Healthcare in England for Children with Avoidant/Restrictive Food Intake Disorder

Abstract

This thesis explores the complex healthcare journey experienced by parents of children diagnosed with Avoidant/Restrictive Food Intake Disorder (ARFID) in England. Through a mixed-methods approach, combining a systematic literature review, a survey of 437 parents, and interviews with six mothers of Autistic children diagnosed with ARFID, the study sought to illuminate the challenges parents face as they navigate the healthcare system and the strategies they employ in the face of these challenges. The literature review identified significant gaps in healthcare professionals' (HCPs) understanding of ARFID, including lack of confidence, difficulties with differential diagnoses, challenges with referrals, and lack of established care pathways. Survey findings revealed a significant association between a child's neurodivergence and the severity of ARFID symptoms, with neurodivergent children exhibiting higher prevalence rates for most ARFID symptoms. The survey also highlighted systemic barriers within primary care pathways, showing that parents who first contacted specialist professionals experienced shorter diagnostic delays compared to those who approached primary care providers. Overall parental satisfaction with NHS ARFID processes and treatment options was generally low. Qualitative data highlighted the profound emotional toll on mothers, who described their healthcare journey as an exhausting obstacle race and being trapped on a referral merry-go-round. They faced significant challenges, including judgement and dismissal from HCPs, diagnostic overshadowing, a lack of clear referral pathways, and frequent rejections of referrals, prolonging their pathway to support while their children deteriorated. The constant need to advocate for their child’s needs, coupled with the emotional strain of managing ARFID’s complex symptomatology, and exhaustion from battling the system, led to widespread feelings of hopelessness, loneliness, fear, desperation, guilt, and anxiety among mothers. These narratives underscore the urgent need for HCPs to provide empathetic and supportive responses, recognising the emotional burden on parents and the importance of early intervention. Overall, the study underscores the need for HCPs to adopt a holistic and nuanced approach to ARFID, integrating specialised knowledge and fostering a more collaborative relationship with parents. Improving training, establishing clear referral pathways, and enhancing multidisciplinary collaboration are essential to improving diagnostic processes and treatment outcomes for children with ARFID, thereby alleviating the significant burden on their parents and improving the experiences of HCPs who face similar systemic challenges. These findings provide a foundation for future research and clinical recommendations to address critical gaps in the healthcare system.