Adolescents with complex chronic illnesses, such as cancer and blood disorders, must partner with family and clinical caregivers to navigate risky procedures with life-altering implications, burdensome symptoms and lifelong treatments. Yet, there has been little investigation into how technology can support these partnerships.
We conducted in-depth interviews, non-participant observations of clinical consultations, and surveys, along with audit log analyses of teens’ and parents’ use of a Personal Health Record system, to better understand common challenges and needs of chronically-ill teens and their parents that could be supported through design.
We draw on our findings to propose design goals for sociotechnical systems to support teens in partnering in their care, highlighting the need for design to support gradually evolving partnerships in care.
Video Preview for ACM CHI 2016
Care Partnerships: Toward Technology to Support Teens’ Participation in Their Healthcare
Matthew Hong, Lauren Wilcox, Daniel Machado, Thomas Olson, Stephen Simoneaux
Proc. SIGCHI Conference on Human Factors in Computing Systems (CHI ’16), May 2016, San Jose, CA, USA. p. 5337-5349.