Parents know best: Caregiver perspectives on eating disorder recovery

Abstract

Objective: This study used mixed methods to evaluate caregiver perspectives on recovery from an eating disorder.Method: Caregivers (N = 387) completed an online survey about their child's weight history, treatment history, illness trajectory, and recovery. Results:Children were predominantly females with adolescent onset anorexia nervosa and currently 18.4 years old on average. Qualitative analysis of caregivers' open-ended definitions of recovery revealed seven distinct recovery domains, including 1) weight (45%); 2) body image, eating disorder cognitions, and related emotions (54%); 3) eating behavior (71%); 4) independence and responsibility in eating disorder management (28%); 5) physical health (21%); 6) psychological well-being (31%); and 7) life worth living (27%). Most (72%) reported that their child had achieved partial or full recovery at some point in their lifetime. Only 20% reported that their child had ever achieved full recovery, but 93% of those had sustained recovery over time (i.e., no relapses since achieving recovery). Physical recovery occurred on average 2.7 years after eating disorder onset, followed shortly by social and emotional recovery (2.9 years), and finally behavioral (3.4 years) and cognitive (3.9 years) recovery, which occurred at weights 6 to 7 pounds higher than those at which physical recovery was achieved. Conclusion:Findings suggest that caregivers hold a multi-faceted view of recovery that includes not only weight restoration and symptom reduction, but also full engagement in social and occupational activities, establishment of a meaningful life, cognitive flexibility, and emotional well-being. These data support clinical observations that physical and behavioral recovery precede cognitive recovery.

Parental experiences with their child’s eating disorder treatment journey

“…Parents of youths with an eating disorder have highlighted the lengthiness of the recovery process [ 35 ]. In a survey of parents of youths who had a diagnosis of an eating disorder, only 20% reported that their child had completely recovered, and reported that physical recovery preceded cognitive recovery [ 1 ]. Treatment with a focus on improving quality of life has been recommended as a follow-up support, after reduction of eating disorder symptoms has been achieved [ 1 ].…”

Concordance between youth and caregiver report of eating disorder psychopathology: Development and psychometric properties of the Eating Disorder‐15 for Parents/Caregivers (ED‐15‐P)

“…Caregiver perspectives on ED recovery have been neglected despite their clinical significance (Accurso, Sim, Muhlheim, & Lebow, 2020). The ED‐15‐P is the first caregiver report measure of ED psychopathology that enables tracking of session‐to‐session change.…”

Parental Experiences with their Child’s Treatment Journey: The Road to Tertiary Level Pediatric Eating Disorder Treatment

“…In a survey of parents of youth who had a diagnosis of an eating disorder, only 20% reported that their child had completely recovered, and reported that physical recovery preceded cognitive recovery (Accurso, Sim, Muhlheim & Lebow, 2020). Treatment with a focus on improving quality of life has been recommended as a follow-up support, after reduction of eating disorder symptoms has been achieved (Accurso et al, 2020). However, the literature suggests a portion of youth and families who would bene t from further eating disorder follow-up care are not offered this option.…”