A qualitative study on the involvement of adolescents and young adults (AYAs) with cancer during multiple research phases: “plan, structure, and discuss”

Abstract

Plain English Summary Currently, more and more collaborations exist between patients and researchers in scientific research projects. Patient-research partnerships give patients the opportunity to add value to research by sharing their own experiences. Besides, patients themselves feel heard in their needs and are empowered. However, inclusion of young patients, like young adults with a cancer diagnosis, remains limited in research itself and specifically in the form of active involvement and collaboration initiatives. Thereby little is known about their age-specific problems and needs. This seems especially the case in young patient populations like adolescents and young adults (AYAs) with cancer who have a poor or uncertain prognosis. By analyzing the experiences of AYAs and researchers, this study aimed to unravel if collaboration within research projects is possible, and what defines the added value of such collaboration. Our study shows that researchers, as well as AYAs, think positively about collaborating during most phases of scientific research projects, even for challenging populations like AYAs with an uncertain and/or poor prognosis. Creating awareness of the possibilities of AYA involvement might increase involvement initiatives in future projects. This can be done using the Involvement Matrix. This is an existing tool which we further expanded according to our findings. Researchers and AYAs can fill in this tool (a table) together to plan, structure and discuss their collaboration. Our findings can be validated and might serve as a starting point for other patient groups.

Keywords

• Involvement
• Collaboration
• Adolescents and young adults
• Involvement matrix
• Cancer
• Research phases