‘Kids need to talk too’: inclusive practices for children's healthcare education and participation

Aims and objectives To examine how children with chronic medical conditions view healthcare education and decision‐making and to propose the application of the universal design for learning in paediatric settings. Background Children and adolescents with chronic medical conditions tend to be excluded from healthcare decision‐making. In schools, the universal design for learning 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 healthcare 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 healthcare education and decision‐making. Methods Twenty‐six 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 paediatric patients to understand their condition, share their views and/or participate in decisions regarding their care. Conclusions In response to ongoing concerns about paediatric decision‐making, we propose that the universal design for learning be adapted in paediatrics. The model presents exemplary programmes 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 universal design for learning could be applied in paediatric settings is offered for the purpose of advancing ethical and psychosocial care for all children regardless of their age, developmental capacity or condition.