Identification of age-appropriate ACP communication in children with chronic medical conditions

Aim. Pediatric advance care planning (pACP) is known to accomplish patient-centered care, in which children should be involved in a way adjusted to their level of development. Although an age-appropriate approach to participating in pACP has clear mandates, tools to integrate age-appropriate pACP elements into pACP interventions are limited and inadequate. It is essential to understand the developmental characteristics of children with chronic medical conditions in their discussions about pACP topics. The aim of this study is to identify how children of varying ages communicate about and value pACP topics.

Methods. A semi-structured picture-aided interview study was conducted, to elicit narratives regarding ACP themes and to explore initial associations and descriptions from chronically ill children. The interviews were thematically analyzed to gain an interpretation about developmental communicative characteristics.

Results. In total 14 children with chronic medical conditions between 4-18 years old were interviewed between January 2023 and September 2023. Findings suggest a development in children where they gradually evolve communicatively from a concrete, egocentric, impulsive and imaginative approach, to a more abstract, socially conscious, metacognitive and controlled communication process. Children prefer to discuss positive topics with their health care providers and favor communication that makes them feel more than their disease. They appreciate a direct approach when doctors try to explore their perspective.

Conclusions. Children are eager and able to engage in pACP-communication. This research enhances the understanding of developmental characteristics regarding the content, relational and comprehension levels of communication in children with chronic medical conditions concerning pACP-topics. Future research should focus on developing guidelines to create an age-appropriate toolkit to promote high-quality pediatric palliative care.