Parental Decision-Making for a Child with a Life-Limiting Condition

Abstract

Purpose: To explore the decision-making experiences of and the supports provided to the parents of children with life-limiting conditions.

Qualitative Study: A qualitative interpretive description study guided by the Ottawa Decision Support Framework was conducted. Interviews with parents and healthcare professionals revealed that parents made difficult healthcare decisions for their child and were prone to experiencing decisional conflict. Participants described a need for interprofessional support, guided decision support, and a preference for formal and informal support networks.

Scoping Review: A scoping review was conducted. The three eligible studies revealed that parents require early and timely decision support provided by an interprofessional team of healthcare professionals and aided by a structured decision support intervention.

Conclusions: Decisions made by parents of children with life-limiting conditions are complex. Healthcare professionals are required to facilitate appropriate decision support interventions for parents including a parent based support network.