This dissertation uses a multi-method approach to examine the role of online communities as a source of peer-to-peer supportive care for breast cancer survivors. A collection of four studies is presented.
Study 1) A systematic search of the Internet identified 111 active online communities for breast cancer survivors with extensive archives of personal health experiences (one third had over 100,000 posts each as of 2010-10-26). More than one-third (36.0%) were initiated by breast cancer survivors or loved ones, and more than two-thirds (69.5%) were maintained with little or no professional input.
Study 2) An analysis of Facebook (www.Facebook.com) identified 620 public breast cancer groups containing a total of 1,090,397 members as of 2008-11-23. The majority of groups were created for fundraising and awareness purposes (92.6%), rather than supportive care (7.4%).
Study 3) One hundred breast cancer survivors, known to provide peer support were surveyed on their supportive care needs and use of online communities. Two-thirds (68.6%) of the 73 respondents reported at least one unmet need, most frequently (30 to 40%) concerning sexual problems, stress, survivor identity, fear of recurrence, and ongoing symptoms or side effects. About one-third (31.5%) used online communities predominantly during and while recovering from treatment. Reasons for non-use included lack of need, self-efficacy, trust and awareness.
Study 4) Twelve breast cancer survivors who participated in the previous study were interviewed on how and why they used online communities. Unmet needs drove use, particularly during periods of stress, uncertainty or insufficient local support. Online communities served as a unique supportive care resource due to their quality of information, reassurance from similar others, availability, anonymity, and limited commitment. Social support, technology adoption and health behaviour theories help to explain use.
Online communities have the potential to fill gaps in health care services by addressing the supportive care needs of breast cancer survivors in a way that may not be available elsewhere, and survivors may play an increasingly important role as care providers. Future research must focus on overcoming barriers to use, and identifying factors that enhance their effectiveness among diverse groups.
| Identifer | oai:union.ndltd.org:TORONTO/oai:tspace.library.utoronto.ca:1807/31690 |
| Date | 05 January 2012 |
| Creators | Bender, Jacqueline Lorene |
| Contributors | Jadad, Alejandro R. |
| Source Sets | University of Toronto |
| Language | en_ca |
| Detected Language | English |
| Type | Thesis |
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