Caregiver Burden Associated With Pediatric Chronic Pain: A Retrospective Study Using the Pediatric Electronic Persistent Pain Outcomes Collaboration Database

Objectives: This retrospective, cross-sectional study investigated the nature and extent of burden experienced by caregivers of children and adolescents with chronic pain, and factors associated with increased caregiver burden.

Methods: The Pediatric Electronic Persistent Pain Outcomes Collaboration database provided prospectively collected data from 1929 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 children with chronic pain 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 loss was significantly associated with school absenteeism (β = 0.290, P < 0.01), child physical disability (β = 0.148, P < 0.01), child health care 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.