Parental Goals of Care for Children With Rare Diseases: A Content Analysis of Pediatric Advance Care Planning Conversations

Abstract

Introduction

Caregivers and surrogate decision makers for children with rare diseases often make complex medical decisions with limited prognostic information specific to their child’s disease. This diverse population may share common goals related to their child’s future care. Our objective was to describe goals of care as explored through advance care planning conversations among the high-risk and high-need community of families with children with rare diseases.

Methods

We performed inductive content analysis of Respecting Choices Next Steps FAmily CEntered (FACE) pediatric advance care planning conversations to identify themes related to goals of care. Interviews were conducted in the context of beta testing and a randomized control trial of a palliative care and advance care planning intervention for parents of children with rare diseases who cannot participate in medical decision making.

Results

We analyzed 15 interviews conducted with 19 parents. We identified 13 goals of care themes: maintaining stability, being happy, moving the body, thriving along their own path, reducing interventions, living a long life, curing disease, avoiding complications, connecting with others, having a village, an understanding world, knowing our child, and partnering with our medical team. Families identified goals within 3 to 11 themes (mean = 7).

Conclusions

Parents of children with rare diseases have a multitude of holistic goals related to their child’s care. High-quality advance care planning conversations may help families articulate these goals. Using language expressed by families described here may help healthcare teams and families communicate effectively around treatment plans and goals of care.