AI Article Synopsis
- Adolescents with complex chronic illnesses often collaborate with family and caregivers to manage risky medical procedures and long-term treatment plans, yet the role of technology in enhancing these partnerships remains under-researched.
- The study involved 38 interviews with teenagers, their parents, and clinical caregivers, revealing key challenges such as limited teen involvement in care, difficulties in communicating sensitive emotional information, and the management of both physical and emotional responses.
- Based on the findings, the researchers suggest design goals for sociotechnical systems aimed at empowering teens to actively engage in their healthcare partnerships, emphasizing the need for designs that facilitate the evolution of these relationships over time.
Article 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.
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|---|---|
| http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5291175 | PMC |
| http://dx.doi.org/10.1145/2858036.2858508 | DOI Listing |
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