Toward a more comprehensive understanding and support of parents with a child experiencing an eating disorder

Abstract

AbstractObjectiveThe majority of eating disorder (ED) carer research has been conducted with parents of adult patients, using qualitative methodologies, focusing on carer burden and distress during treatment. This article aimed to use results from a large, national, quantitative survey of parents of child or adolescent patients as a springboard for encouraging a more comprehensive investigation of parent experiences.MethodsThe online survey assessed treatment experiences and parent distress (DASS‐21) but also less commonly investigated topics including symptom detection, experiences with primary care providers, and impacts on parent physical and psychological health, romantic relationship, finances, and employment.ResultsKey findings included parents (N = 439; 91.6% female): were the first person to notice the ED symptoms in 81.8% of cases; had only a 14.7% chance of a helpful experience with both the first general practitioner and first therapist they saw; needed to see M = 3.55 therapists before finding one that could help; reported worse than normal psychological health (96.0%), physical health (70.5%), and romantic relationship (92.7%); required M = 70.06 days leave from work to care for their child (per household); and 91.8% accessed treatment in the private sector with median out‐of‐pocket expenses of AUD 10,0001–AUD 20,000.DiscussionRecommendations to address research and practice gaps include: increased focus on supporting initial symptom detection; improving primary care and treatment experiences; and, increasing the number of ED treatment providers. Urgently needed are solutions to the overwhelming demand for services and clearly, more support for parents. Such strategies are vital for reducing the overall burden of EDs.Public SignificanceMost eating disorder (ED) caregiver research has focused on experiences of supporting adult patients during treatment. This article used a large national survey to explore parent experiences of their child or adolescent's ED in less commonly investigated areas, such as detection, primary care, impact on parent physical and psychological health, romantic relationship, employment and finances. Findings suggested mixed experiences with health care providers and a very significant toll of the illness on the domains measured. Recommendations were provided for how these important areas can be addressed.