Parental experiences in end-of-life decision-making in allogeneic pediatric stem cell transplantation: "Have I been a good parent?"

Pediatric Blood & Cancer
Hilda MekelenkampMarijke C Kars

Abstract

In pediatric hematopoietic stem cell transplantation (HSCT), the end-of-life (EOL) phase and the loss of the child is often characterized by a sudden deterioration of the child following a period of intensive curative treatment. This demands a fast transition for parents. Therefore, an understanding of the parents' perspective on decision-making in such a complex situation is needed. This study aims to gain insight in parental experiences in EOL decision-making in allogeneic pediatric HSCT. A qualitative descriptive study was performed among parents of eight families. Data were thematically analyzed. All parents were aware of their child's deterioration. Six families were confronted with a rapid deterioration, while two families experienced a gradual realization that their child would not survive. Parental EOL decision-making in pediatric HSCT shows a reflective perspective on the meaning of parenthood in EOL decision-making. Two central themes were identified: "survival-oriented decision-making" and "struggling with doubts in hindsight." Six subthemes within the first theme described the parents' goal of doing everything to achieve survival. Parents experienced EOL decision-making mainly as a process guided by health care prof...Continue Reading

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Citations

Mar 21, 2020·Pediatric Blood & Cancer·Bryan A Sisk
Mar 23, 2021·Journal of Pediatric Oncology Nursing : Official Journal of the Association of Pediatric Oncology Nurses·Nicole B BeckmannTerrah F Akard
Aug 28, 2021·Children·Hilda Mekelenkamp Paediatric Diseases Working Party

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