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Caregiver Burden Associated With Pediatric Chronic Pain: A Retrospective Study Using the Pediatric Electronic
Danny Ngo1,2, Greta M Palmer3,4,5, Andrew Gorrie1,2
1Department of Pain, Sydney Children's Hospital, Randwick.
Insights
Caregivers of children with chronic pain experience significant work impairment and psychosocial burden. Factors like child
Area of Science:
- Pediatric Pain Management
- Caregiver Burden Studies
- Chronic Pain Research
Background:
- Chronic pain in children and adolescents presents a significant challenge.
- Caregiver burden is a recognized but often understudied aspect of pediatric chronic pain.
- Understanding the multifaceted impact on caregivers is crucial for comprehensive care.
Purpose of the Study:
- To investigate the nature and extent of burden experienced by caregivers of children with chronic pain.
- To identify factors associated with increased caregiver burden.
- To quantify work impairment and psychosocial functioning in this population.
Main Methods:
- Retrospective, cross-sectional study utilizing data from the Pediatric Electronic Persistent Pain Outcomes Collaboration database.
- Included 1929 families from pediatric chronic pain services in Australia and New Zealand.
- Collected data on demographics, child pain/functioning, caregiver work impairment, and psychosocial functioning.
Main Results:
- Caregivers reported substantial work impairment (15% absenteeism, 38% productivity loss), exceeding general population and other chronic condition samples.
- Significant psychosocial burden was noted, particularly in leisure functioning, catastrophizing, and adverse parenting.
- Caregiver burden linked to child's psychosocial functioning, school absenteeism, physical disability, and pain duration, but not pain intensity.
Conclusions:
- Caregivers of children with chronic pain face significant and diverse impacts, including notable work impairment.
- This study confirms and expands upon previous findings regarding psychosocial burden in a larger pediatric chronic pain sample.
- Findings underscore the need for targeted support and interventions for caregivers of children with chronic pain.
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.
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