Caregiver burden in pediatric dialysis

Pediatr Nephrol. 2020 Sep;35(9):1575-1583. doi: 10.1007/s00467-019-04332-5. Epub 2019 Aug 21.


In spite of improvements in expected survival, neurodevelopmental outcome, and quality of life, decision-making in neonatal dialysis remains controversial in high-resource countries. In part, this may be based upon the significant burdens experienced by the child, and also those experienced by the parents as caregivers. Emerging research offers a clearer description of the burdens experienced by dialysis caregivers worldwide. Caregiver burden represents an important area for nephrologists to advocate for patients and their families; however, nephrologists must also recognize the realities caregivers currently experience. Incorporation of caregiver burden into medical decision-making for children with end-stage kidney disease is necessary, but raises several ethical concerns.

Keywords: Caregiver burden; Decision-making; Dialysis; Ethics.

Publication types

  • Review

MeSH terms

  • Adolescent
  • Caregiver Burden / psychology*
  • Child
  • Child, Preschool
  • Decision Making
  • Family / psychology
  • Humans
  • Infant
  • Infant, Newborn
  • Quality of Life*
  • Renal Dialysis / economics
  • Renal Dialysis / psychology*
  • Renal Insufficiency, Chronic / therapy