When Worlds Collide: Boundary Management of Adolescent and Young Adult Childhood Cancer Survivors and Caregivers

Abstract

Adolescent and young adult childhood cancer survivors experience health complications, late or long-term biomedical complications, as well as economic and psychosocial challenges that can have a lifelong impact on their quality-of-life. As childhood cancer survivors transition into adulthood, they must learn to balance their identity development with demands of everyday life and the near- and long-term consequences of their cancer experience, all of which have implications for the ways they use existing technologies and the design of novel technologies. In this study, we interviewed 24 childhood cancer survivors and six caregivers about their cancer survivorship experiences. The results of our analysis indicate that the challenges of transitioning to adulthood as a cancer survivor necessitate the development and management of multiple societal, relational, and personal boundaries, processes that social computing technologies can help or hinder. This paper contributes to the empirical understanding of adolescent and young adult cancer survivors’ social experiences. We further contribute sociotechnical design provocations for researchers, designers, and community members to support survivors.