Caregiver Burden Associated with Pediatric Chronic Pain

Abstract

Objectives: This retrospective, cross-sectional study investigated the nature and extent of burden experienced by caregivers of adolescents and children with chronic pain, and factors associated with increased caregiver burden. Methods: The Paediatric electronic Persistent Pain Outcomes Collaboration (PaedePPOC) database provided prospectively collected data from 1,929 families attending 9 pediatric chronic pain services across Australia and New Zealand. Data included demographic information, responses to child pain and functioning measures, caregiver work impairment and psychosocial functioning. Results: Caregivers of pediatric chronic pain patients reported work impairment associated with their child’s pain (mean 15%±SD 25 absenteeism; 38%±SD 29 productivity lost), significantly worse than published international population norms (large-scale community survey data), most other caregiver samples of adults and children with other chronic conditions, and adult samples with various pain conditions. Caregivers reported considerable burden in multiple psychosocial functioning domains, particularly leisure functioning, pain-related catastrophizing, and adverse parenting behaviors (with greater pain-related avoidance). Caregiver psychosocial burden was significantly associated with child psychosocial functioning (β=−0.308, P<0.01), school absenteeism (β=0.161, P<0.01), physical disability (β=0.096, P<0.05) and pain duration (β=0.084, P<0.05), but not pain intensity. Caregiver work productivity lost was significantly associated with school absenteeism (β=0.290, P<0.01), child physical disability (β=0.148, P<0.01), child healthcare utilization (β=0.118, P<0.05) and worst pain intensity (β=0.101, P<0.05). Discussion: These results highlight the significant and varied impacts experienced by caregivers of children with chronic pain. This work is novel in reporting significant work impairment and confirms psychosocial burden in a larger sample than previous studies.