Health-related quality of life outcomes of participants in a Montana-specific, online support community for people in Montana with inflammatory bowel disease

Abstract

Research shows that access to social support can help mitigate the negative psychological effects of chronic illness, and positively influence health outcomes, ultimately improving the health-related quality of life (HRQOL) of those affected. However, many with inflammatory bowel disease (IBD) in Montana may lack access to social support and illness-related knowledge needed to manage their disease successfully. If a viable, accessible, and beneficial opportunity were available, it would be crucial to have the endorsement of local physicians. The problem addressed in this study was that those serving individuals in Montana with IBD need to know how individuals participating in a Montana-specific, online support community for those in Montana with IBD assess and describe their experiences within the community, and how they report that their experiences have affected their HRQOL in the areas of social support and illness knowledge. Three research questions were posed: How do participants assess and describe their experiences within the online community; how have their experiences impacted their HRQOL as exhibited through impacts on social support; and, how have their experiences impacted their HRQOL as exhibited through impacts on illness knowledge? Ten participants were recruited from the membership of the online community, MontanasGotGuts.org. A 20-item, self-report survey instrument was initially used to obtain demographic data, website usage data, and data on participants' experiences. Next, qualitative research methods, using semi-structured interviews, were conducted to collect more insightful, descriptive data. Study findings consisted of four major themes with 14 subthemes that illustrated how the participants experienced the online community. The major themes included: participants expressed a need to meet others with IBD; participants reported low active participation levels; participants valued the community as a source of IBD-related information; and, participants valued the community as a source of social support. Recommendations were made to the researcher, the national IBD community, those with IBD and their physicians, and other online health community administrators.