Chronically Under-Addressed: Considerations for HCI Accessibility Practice with Chronically III People

Accessible design and technology could support the large and growing group of people with chronic illnesses. However, human computer interactions(HCI) has largely approached people with chronic illnesses through a lens of medical tracking or treatment rather than accessibility. We describe and demonstrate a framework for designing technology in ways that center the chronically ill experience. First, we identify guiding tenets: 1) treating chronically ill people not as patients but as people with access needs and expertise, 2) recognizing the way that variable ability shapes accessibility considerations, and 3) adopting a theoretical understanding of chronic illness that attends to the body. We then illustrate these tenets through autoethnographic case studies of two chronically ill authors using technology. Finally, we discuss implications for technology design, including designing for consequence-based accessibility, considering how to engage care communities, and how HCI research can engage chronically ill participants in research.

Kelly Mack*, Emma J. McDonnell*, Leah Findlater, and Heather D. Evans. In The 24th International ACM SIGACCESS Conference on Computers and Accessibility.

Competing Online Viewpoints and Models of Chronic Illness

People with chronic health problems use online resources to understand and manage their condition, but many such resources can present competing and confusing viewpoints. We surveyed and interviewed with people experiencing prolonged symptoms after a Lyme disease diagnosis. We explore how competing viewpoints in online content affect participants’ understanding of their disease. Our results illustrate how chronically ill people search for information and support, and work to help others over time. Participant identity and beliefs about their illness evolved, and this led many to take on new roles, creating content and advising others who were sick. What we learned about online content creation suggests a need for designs that support this journey and engage with complex issues surrounding online health resources.

Jennifer Mankoff, Kit KuksenokSara B. KieslerJennifer A. RodeKelly Waldman:
Competing online viewpoints and models of chronic illness.CHI 2011: 589-598