Exploring Parental Decision Making for a Child With a Life-Limiting Condition: An Interpretive Description Study

Abstract

The purpose of this study was to explore parents’ and health care professionals’ perception of parents’ experiences in making decisions between acute and palliative therapies along the trajectory of their child’s life-limiting condition. An interpretive description qualitative study was conducted. Semistructured interviews were completed with 6 parents and 6 health care professionals. Qualitative thematic analysis was used to identify, analyze, and report 4 themes: (1) “Going by your heart and gut”: the process of making a unique decision; (2) “Not black and white”: experiencing decisional conflict when making difficult decisions; (3) “Widening the circle of care”: various sources of decision-making support; and (4) “Always a worry”: concerns regarding parents’ decision quality and outcomes. Parents described experiencing decisional conflict when making health care decisions for their child with a life-limiting condition. Decision support provided by health care professionals in an interprofessional manner was preferred and supplemented by a parent-based support network. Reassurance regarding their good parenting from health care professionals was described as supportive throughout the decision-making experience.