Care Partnerships

TLDR

Adolescents with complex chronic illnesses must partner with family and clinical caregivers to navigate risky procedures, burdensome symptoms, and lifelong treatments. The study aims to investigate how technology can support adolescent–caregiver partnerships and proposes design goals for sociotechnical systems that facilitate gradually evolving collaboration. The authors conducted 38 in-depth interviews with adolescents, parents, and caregivers, plus nine observations of clinical consultations, to identify challenges and inform design goals for sociotechnical support. Participants identified three main challenges: limited teen participation, difficulty communicating emotionally sensitive information, and managing physical and emotional responses.

Abstract

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.