Hong Matthew K, Wilcox Lauren, Machado Daniel, Olson Thomas A, Simoneaux Stephen F
School of Interactive Computing, College of Computing, Georgia Institute of Technology.
Aflac Cancer and Blood Disorders Center, Children's Healthcare of Atlanta, Emory University School of Medicine.
Proc SIGCHI Conf Hum Factor Comput Syst. 2016 May 7;2016:5337-5349. doi: 10.1145/2858036.2858508.
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.
患有复杂慢性病（如癌症和血液疾病）的青少年必须与家人和临床护理人员合作，以应对具有改变生活意义、令人负担沉重的症状和终身治疗的高风险程序。然而，对于技术如何支持这些合作关系，几乎没有进行过调查。我们进行了38次深入访谈（15次针对患有慢性癌症和血液疾病的青少年，15次针对他们的父母，8次针对临床护理人员），并对临床会诊进行了9次非参与式观察，以更好地了解通过设计可以支持的常见挑战和需求。参与者面临的挑战主要涉及：1）青少年在自身护理中的参与度有限，2）传达情感敏感信息，以及3）管理身体和情绪反应。我们利用这些发现为社会技术系统提出设计目标，以支持青少年参与自身护理，强调设计需要支持护理中逐渐发展的合作关系。
