This study brings voice to individuals who suffer from a rare dis-ease called Tarlov Cysts, an illness not understood widely in the medical community, yet one that causes chronic pain and inevitable suffering. In addition to persistent pain, this illness brings with it severe physical limitations and significant lifestyle changes. Individuals from around the world connect to an online support community that provides insight into their disease and support from individuals who live with the illness.
The purpose of this study is to explore the role an online support community plays and the transformative learning possibilities individuals encounter as they deal with this rare disease. The research question is: “How does an online community support chronic disease sufferers in transforming their relationship to their disease?”
This research collects narratives from 11 participants who have been engaged in an online support community for several months. Data collection spans three consecutive months. Data analysis yields a collective narrative that provides insight into the online community, the coping mechanisms of dealing with a chronic illness, and the social and cultural impacts that arise. Findings are helpful to Tarlov cyst sufferers, as well as the larger society in providing innovative methods for combining Integrative Medicine and Internet usage into the healthcare system.
|Advisor:||Jones, Constance A.|
|School:||California Institute of Integral Studies|
|School Location:||United States -- California|
|Source:||DAI-A 71/05, Dissertation Abstracts International|
|Subjects:||Alternative Medicine, Web Studies, Health education, Mass communications|
|Keywords:||Chronic disease, Chronic disease/illness, Integrative medicine, Online community, Support living and coping, Tarlov cysts, Transformative learning|
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