The Experience of Mothering a Child with a Kidney Transplant and the Implications of Illness-Related Uncertainty

Abstract

Advances in the surgical and immunological aspects of organ transplantation have resulted in significant improvements in long-term outcomes and survival rates, making kidney transplantation the optimal therapy for children with chronic kidney disease (CKD). This study examines the phenomenon of sustained uncertainty as an element of the burden of care for maternal caregivers of children who have undergone kidney transplantation. This study indicates these mothers experience uncertainty in two prominent ways: 1) in their subjective sense of time, and 2) in their ongoing fear that their child will experience rejection of the transplanted kidney. Ultimately, this study advocates for nephrology social workers to begin addressing the social and emotional implications of uncertainty in the experience of illness for caregivers.