Kids need to talk too: Inclusive practices for children's healthcare education and participation

Aims and Objectives This study examines how children with chronic medical conditions view health care education and decision-making. This article aims to propose the application of universal design for learning (UDL) in pediatric settings. Background Children and adolescents with chronic medical conditions tend to be excluded from health care decision-making. In schools, the universal design for learning (UDL) promotes access to education and participation in school communities for all children, regardless of their disabilities or medical needs, rendering it an appropriate model for children's participation in health care decision-making. Design This article presents findings from a qualitative study with 26 children and adolescents with chronic medical conditions about their views and experiences with health care education and decision-making. Methods 26 children and adolescents with chronic medical conditions were interviewed using semi-structured interviews. Results Findings provide evidence that clinical practices often fail to provide equal opportunities for pediatric patients to understand their condition, share their views, and/or participate in decisions regarding their care. Conclusions In response to ongoing concerns about pediatric decision-making, we propose that the Universal Design for Learning (UDL) be adapted in pediatrics. The model presents exemplary programs as inclusive, accounting for the needs of all children through multiple means of engagement and expression. Relevance to Clinical Practice A discussion of how the principles of UDL could be applied in pediatric settings is offered for the purpose of advancing ethical and psychosocial care for all children regardless of their age, developmental capacity or condition. This article is protected by copyright. All rights reserved.