Living with Chordoma Online: A Thematic Analysis of User's Experiences in an Online Cancer Support Group

Abstract

The internet has revolutionized the way people are able to seek information and express themselves. Many fields have been dramatically impacted by its occurrence and the health field is no exception. It is becoming increasingly popular to participate in online discussion forums centered on health-related topics. The goal of this research is to describe participants' experience of using an on-line forum focused on Chordoma, a rare form of cancer. Analysis of free-response questionnaires filled out by members of the forum, revealed four key themes: (a) the forum is a source of invaluable information, (b) the forum is a source for emotional support and hope, (c) members share a unique bond that often results in friendship, and (d) members' involvement changes over time. Benefits obtained by the users and implications for medical professionals are discussed.