RESUMO
BACKGROUND: Caring for a child with kidney failure on dialysis profoundly impacts caregivers' lives, yet the depth of this burden is not well understood. The Paediatric Renal Caregiver Burden Scale (PR-CBS) is a recently validated instrument used to measure caregiver burden in this population. METHODS: We performed a cross-sectional study of caregiver burden for caregivers of children with kidney failure receiving dialysis at three pediatric centers. Caregivers completed the PR-CBS instrument as part of a larger qualitative study of caregiver experience. We performed descriptive statistics. T-tests were used to examine differences between dialysis modality and within key demographics. Multivariate linear regression was utilized to assess associations between significant factors and total score. RESULTS: Ten caregivers of children receiving peritoneal dialysis (PD) and 21 receiving hemodialysis (HD) participated. Total burden score and mean score for every domain was higher for caregivers of children on HD compared to PD. PR-CBS score was significantly associated with younger child age and married status in caregivers. In adjusted multivariate analysis, dialysis modality and married marital status were significantly associated with PR-CBS score. CONCLUSIONS: This study found that dialysis caregivers experience significant caregiver burden and demonstrates the utility of the PR-CBS in an American population. We found higher burdens among HD caregivers, younger children, and married caregivers. While these findings must be replicated on a larger scale, they suggest possible areas for targeted interventions to improve the quality of life of children with kidney failure and their families. A higher resolution version of the Graphical abstract is available as Supplementary information.
