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Toward an Understanding of Advance Care Planning in Children With Medical Complexity

Julia Orkin1,2,3, Laura Beaune3, Clara Moore1,3

  • 1Complex Care Program, Division of Pediatric Medicine.

Pediatrics
|February 15, 2020
PubMed

Insights

Advance care planning (ACP) for children with medical complexity (CMC) requires a family-centered approach. Understanding parents' and healthcare providers' experiences can improve ACP delivery through better communication and a holistic mindset.

Area of Science:

  • Pediatric Healthcare
  • Palliative Care
  • Family Medicine

Background:

  • Children with medical complexity (CMC) face significant morbidity and mortality risks.
  • Existing advance care planning (ACP) strategies require adaptation for CMC.
  • There is a need to understand the unique perspectives of parents and healthcare providers (HCPs) regarding ACP for CMC.

Purpose of the Study:

  • To explore the experiences of parents and HCPs of CMC with advance care planning (ACP).
  • To identify key themes and challenges in ACP for this population.
  • To inform the development of a family-centered ACP framework.

Main Methods:

  • Conducted 25 semistructured interviews with parents and HCPs of CMC.
  • Utilized thematic content analysis to analyze interview data until saturation.
  • Focused interview questions on ACP understanding, experiences, and improvement suggestions.

Main Results:

  • Identified four major themes: holistic mindset, discussion content (values, goals, quality of life), communication enhancers, and ACP definition.
  • Highlighted the importance of partnerships, supportive settings, early/ongoing conversations, and provider expertise/comfort.
  • Revealed a need for family-centered ACP tailored to CMC.

Conclusions:

  • Family and HCP perspectives underscore the necessity of family-centered ACP for CMC.
  • Developed a framework to enhance ACP delivery using a holistic mindset, targeted discussion content, and improved communication strategies.
  • Emphasizes early, consistent, and empathetic communication in ACP for children with medical complexity.
Abstract

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