Care Partnerships: Toward Technology to Support Teens' Participation in Their Health Care.
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 38 in-depth interviews (15 with teenage adolescents with chronic forms of cancer and blood disorders, 15 with their parents, and eight with clinical caregivers) along with nine non-participant observations of clinical consultations to better understand common challenges and needs that could be supported through design. Participants faced challenges primarily concerning: 1) teens' limited participation in their care, 2) communicating emotionally-sensitive information, and 3) managing physical and emotional responses. We draw on these 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.
School of Interactive Computing, College of Computing, Georgia Institute of Technology.
Matthew K
MK
Hong
School of Interactive Computing, College of Computing, Georgia Institute of Technology.
Lauren
L
Wilcox
School of Interactive Computing, College of Computing, Georgia Institute of Technology.
Daniel
D
Machado
Aflac Cancer and Blood Disorders Center, Children's Healthcare of Atlanta, Emory University School of Medicine.
Thomas A
TA
Olson
Aflac Cancer and Blood Disorders Center, Children's Healthcare of Atlanta, Emory University School of Medicine.
Stephen F
SF
Simoneaux
Adolescents; Chronic Illnesses; Families; Health Information Management; Personal Health; Self-Management