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.