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