Abstract
Human search for information is an instinctual act. Search is a problem-solving, goal-oriented behavior. With the rise of the computer, searching has quickly manifested itself into a digital activity. Searching the internet for information is a ubiquitous act. In some situations, there are information-seeking circumstances where a user’s need for information is of extreme importance, such as seeking medical information. This research concerns the experience of rare disease caretakers who search online for health information. This research investigates the user’s emotional state while searching online to develop frameworks for designers. Findings suggest that searching for health information for rare disease caretakers is an emotionally charged activity. Rare disease caretakers often rely on community resources to aid in the stress of their situation. Over time through researching, users become self-made rare disease experts. After a pilot focus group study, data were collected from interviews and observations. Data were systematically analyzed using methods of grounded theory. The categories that emerged were researching, engaging with community, becoming the expert, and state of mind. Connections were made to the guiding theories of the study: Leventhal’s Common-sense Model of Illness Representations and Wilson’s Model of Information Behavior. This dissertation contributes to the field of UX by offering a proposed set of guidelines for designers to follow when designing health information websites. It reveals the necessity of designing for specialized user groups who have often been underserved. Information gained from this study suggests the need for future research in information-seeking behavior, UX, and online community participation.
Presenters
Rachael PaineAssistant Professor, Graphic Design, Virginia Tech, Virginia, United States
Details
Presentation Type
Paper Presentation in a Themed Session
Theme
KEYWORDS
User Experience Design, Information-Seeking, Rare Disease, Grounded Theory
