Kinderen en jongeren oncologie

In the adult population, advance care planning (ACP) has shown to improve communication around care planning. However, ACP tools or interventions for child and adolescent cancer patients are scarce and evidence is lacking. There is evidence that adolescent patients have the desire and ability to share their values, beliefs, and preferences for treatment at the end of life. Especially communication about topics such as “what to do if the adolescent should get significantly worse” remains difficult, leaving room for improvement. 

Purpose: Participatory design (PD) is a collective creative design process involving designers and nondesigners. There is limited reporting on the experience of using PD for adolescent and young adult (AYA) care. This study summarizes lessons from employing PD to develop care for AYAs with cancer.

Methods: A qualitative multiple-case study method was conducted of three PD processes addressing food (FfC), intimacy and sexuality (I&S), and integrative medicine (IM) in caring for AYAs with cancer.