Parents' Experiences of Palliative Care Decision Making for Children With Terminal Cancer: A Qualitative Study.

Abstract

The objective of this study was to describe the experiences and perceptions of parents making palliative care decisions for children with end-stage malignancies. This qualitative study was conducted with 13 parents from 9 families of children with end-stage malignant tumors. Data were analyzed using thematic content analysis. Three interrelated themes were identified: (1) parental knowledge of the child's condition influences palliative care decision making, (2) the establishment of a mutually trusting relationship between parents and health care professionals is key to implementing palliative care decision making, and (3) the influence of family background and traditional culture on parental palliative care decision making. This study adds to the evidence related to parents' experiences of end-of-life care decision making and provides findings of international significance, particularly concerning the place of care and the introduction of end-of-life care discussions. Parents' expert knowledge of their child's condition is important and should be recognized. End-of-life care decision making is a complex and delicate process; each family's information needs and preferences are individualized and need to be understood by the professionals involved in care.