| Description |
According to the Office of Rare Diseases Research (ORDR) at the National Institutes of Health (NIH), rare diseases affect more than 25 million Americans. The scarcity of information, poor prognosis, and lack of viable treatment options for many conditions causes significant anxiety for rare disease patients and their families. Increasingly, rare disease populations are going online to acquire the support necessary to cope with their health challenges. This dissertation builds upon earlier work by answering a question left largely unaddressed to date: what roles do social support and online support environments play for patients affected by rare disease? This dissertation follows the three article format. In the first article, the author provides a review of important literature from three main areas of research; social support, online support groups/social media, and rare disease. The author also discusses implications of computerized health care services for the field of health promotion and education. In the second article, the author reports the results of a recent study in which a conventional approach to qualitative content analysis was utilized to characterize the followers, focus, founders and formation of sarcoma related Facebook groups. Three different coding schemes for classifying online support groups were identified: group focus or orientation (person vs. population), founder treatment status (patient or nonpatient) and founder disease affiliation status (active treatment, survivor, in memoriam, or external organization). This study suggests that Facebook groups provide a mechanism not only for identifying disease specific groups, but also for facilitating connections between individuals with similar backgrounds or states of disease progression. The third article reports the results of an additional qualitative study examining the online social support experiences of patients in active treatment for Osteosarcoma, a rare and aggressive form of cancer. Evidence of seven distinct types of social support were observed: appraisal, emotional, informational, spiritual, esteem, network and tangible. This study suggests that appraisal and spiritual support may play a bigger role in online support communities than has been previously suggested. It is hoped that this dissertation will serve as a call to action for other researchers. Additional research is needed to adequately address and understand the needs of those affected by rare disease. |
