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

Authors

Tamiko Younge, Division of Neonatology, Children's National Hospital, Washington, DC, USA.
Hailey Moore, Center for Translational Research, Children's National Research Institute, Children's National Hospital, Washington, DC, USA.
Jessica D. Thompkins, Center for Translational Research, Children's National Research Institute, Children's National Hospital, Washington, DC, USA.
Maureen E. Lyon, Center for Translational Research, Children's National Research Institute, Children's National Hospital, Washington, DC, USA.

Document Type

Journal Article

Publication Date

7-2-2025

Journal

The American journal of hospice & palliative care

DOI

10.1177/10499091251356237

Keywords

advance care planning; goals of care; patient care planning; pediatric palliative care; qualitative research; rare diseases

Abstract

IntroductionCaregivers 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.MethodsWe 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.ResultsWe 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).ConclusionsParents 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.

APA Citation

Younge, Tamiko; Moore, Hailey; Thompkins, Jessica D.; and Lyon, Maureen E., "Parental Goals of Care for Children With Rare Diseases: A Content Analysis of Pediatric Advance Care Planning Conversations" (2025). GW Authored Works. Paper 7657.
https://hsrc.himmelfarb.gwu.edu/gwhpubs/7657

Department

Pediatrics