How do you define recovery? A qualitative study of patients with eating disorders, their parents, and clinicians

Recovery from an eating disorder (ED) may be defined differently by different stakeholders. We set out to understand the definition of ED recovery from the perspective of patients, their parents, and clinicians.

We recruited patients with EDs (n = 24, ages 12-23 years) representing different diagnoses (anorexia nervosa n = 17, bulimia nervosa n = 4, binge-ED n = 2, avoidant/restrictive food intake disorder n = 1), along with their parents (n = 20), dietitians (n = 11), therapists (n = 14), and primary care providers (n = 9) from three sites: Boston Children's Hospital, University of Michigan C. S. Mott Children's Hospital, and Penn State Hershey Children's Hospital. In-depth, semi-structured, qualitative interviews explored participants' definitions of recovery. Interviews were analyzed using inductive data-driven thematic analysis. Statistical analyses followed to examine the distribution within each theme by respondent type.

Qualitative analysis resulted in the emergence of four overarching themes of ED recovery: (a) psychological well-being, (b) eating-related behaviors/attitudes, (c) physical markers, and (d) self-acceptance of body image. Endorsement of themes two and four did not significantly differ between patients, parents, and clinicians. Clinicians were significantly more likely to endorse theme one (χ² = 9.90, df = 2, p = .007, φ_c = 0.356) and theme three (χ² = 6.42, df = 2, p = .04, φ_c = 0.287) than patients and parents.

Our study demonstrates overwhelming support for psychological markers as indicators of ED recovery by all three groups. Clinicians should remain open to additional markers of recovery such as body acceptance and eating-related behaviors/emotions that may be of critical importance to patients and their caregivers.