Quality of Life and Burden in Caregivers of Youth with Severe Obsessive-Compulsive Disorder

Pediatric obsessive-compulsive disorder (OCD) is a heterogeneous disorder associated with functional impairment and deleterious effects at the family level. Caregivers are often enmeshed in the disorder, coping with the child’s OCD-related distress and engaging in accommodating behaviors. Given the developmental level of these youth and the impactful nature of OCD, caregivers may experience considerable burden and decreased quality of life (QoL). However, extant literature on these constructs is largely limited to caregivers of patients with chronic illnesses, and the few existing studies examining OCD samples are limited to adult patients. As such, this study sought to examine burden and QoL in caregivers of youth enrolled in an intensive outpatient or partial hospitalization program for their severe OCD. Specifically, the relationships between caregiver QoL and burden and the following variables were investigated: OCD symptom severity, functioning (youth functional impairment, general family functioning), family (family accommodation, parental relationship satisfaction, positive aspects of caregiving), and comorbid psychopathology (caregiver anxiety and depressive symptoms, youth internalizing and externalizing behaviors). Seventy-two child and caregiver dyads participated in the study and completed a battery of clinician- and self-rated questionnaires. Different components of caregiver QoL correlated with caregiver-rated functional impairment, family accommodation, youth externalizing behaviors, and caregiver psychopathology. Various aspects of caregiver burden correlated with OCD symptom severity, functional impairment related to OCD, as well as caregiver and child comorbid psychopathology. Caregiver depressive symptoms predicted caregiver QoL, and caregiver depressive symptoms and child externalizing symptoms both predicted caregiver burden. Caregiver burden did not mediate the relationship between obsessive-compulsive symptom severity and caregiver QoL. Ultimately, elucidating factors associated with increased caregiver burden and poorer QoL are pertinent for the identification of at-risk families and development of targeted interventions