Caregiver burden and illness perceptions in caregivers of medically hospitalized youth with anorexia nervosa

Caregiver burden is common in caregivers of youth with anorexia nervosa (AN) and could impede the successful implementation of family-based therapy (FBT). Thus, it is important to better understand mechanisms by which caregiver burden is developed and maintained. This study aimed to examine the relation between caregiver illness perceptions about AN, symptom severity indicators, and caregiver burden in a sample of medically hospitalized youth with AN. Fifty-one youth with AN (N = 34) or Atypical AN (AAN; N = 17; mean age = 14.85, SD = 1.41; 76% female) and their primary caregivers (N = 47 mothers and N = 4 fathers) completed self-report questionnaires at hospital admission. Collected data included caregiver and youth illness perceptions about AN, caregiver burden, and youth self-reports of psychological symptoms. Physiological data regarding symptom severity included admitting percent of expected body weight (%EBW) and minimum heart rate during admission. Findings indicated that caregiver beliefs about negative consequences of AN were associated with caregiver burden, independent of youth age, sex, illness duration, and diagnosis. Youth reports of symptom severity, %EBW, and low heart rate were not associated with increased caregiver burden. Findings suggest that the subjective experience of having a youth with AN are a greater determinant of caregiver burden than objective indicators of illness severity. Further, these findings provide support for the FBT clinician to strike a balance between providing information about the potential consequences of AN, while instilling hope for recovery and bolstering parent self-efficacy.