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

Abstract

Objective The 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. Methods The 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. Results Key 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. Discussion Recommendations 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 Significance Most 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.

The parents aren't alright, either: Commentary on Wilksch (2023)

“…In this issue of the International Journal of Eating Disorders, Simon Wilksch supports with empirical data what clinicians and research have long suspected: caring for a child with an ED is psychologically, physiologically, interpersonally, and financially draining (Wilksch, 2023). Indeed, Wilksch's conclusions likely underrepresent the dire situation in which parents find themselves, given that data were collected prior to the COVID-19 pandemic (during which rates and severity of EDs increased, paralleled by declines in available services and cessation of in-person care for all but the most acute presentations), in a country with universal healthcare rather than one with less readily accessible healthcare, and within a highly educated sample of parents who, compared to less educated parents, may be better equipped to navigate challenges associated with caring for a child with an ED (including obtaining services in the private sector).…”

How best to support parents of children with an eating disorder: A commentary on Wilksch (2023)

“…A slight shift in focus on foundational systemic relations among the family members who engage in FBT will go a long way to providing more support for these parents. Wilksch (2023) has shown us that we clearly do not have time to waste in addressing these concerns.…”

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Wilksch (2023) uses survey data to characterize the perspective of caregivers of children who have undergone treatment for an eating disorder. With this framework, the author presents an evocative view of both the challenges these parents experience in acquiring needed specialty treatment, as well as the negative impact that the caregiving role may have on their own well-being.

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“…1 | COMMENTARY Wilksch (2023) presents compelling data from a national survey of Australian parents who are (or have been recently) navigating treatment for their child with an eating disorder. The data described, while to some degree unsurprising in their implications, provide a sobering view of the depth of suffering that parents of a child with an eating disorder might experience.…”

Parents of children with high weight and disordered eating: Commentary on Wilksch (2023)

“…adolescents, children, early intervention, eating disorders, obesity, overweight, parents, weight-based stigma Wilksch highlights a number of pressing issues facing parents caring for a child with an eating disorder (ED) (Wilksch, 2023). Among 439 parents of children with a current or recent ED, most were the first to notice the ED symptoms, nearly one-third found the first doctor's visit related to their child's ED to be unhelpful, and the mean time between initial symptom detection and seeing a therapist was over 6 months.…”