What Is the Role of Online Support for the Supporters? a Multi-Method Study Examining the Use of Online Communities among Breast Cancer Peer Support Providers



Jackie Bender* Jackie Bender*, Centre for Global eHealth Innovation, University of Toronto and University Health Network, Toronto, Canada
Lorraine Ferris, University of Toronto, Toronto, Canada
Joel Katz, York University, Toronto, Canada
Alejandro R. Jadad, Centre for Global eHealth Innovation, University of Toronto, Toronto, Canada


Track: Research
Presentation Topic: Building virtual communities and social networking applications for patients and consumers
Presentation Type: Oral presentation
Submission Type: Single Presentation

Building: LKSC Conference Center Stanford
Room: Lower Auditorium 120
Date: 2011-09-17 04:30 PM – 06:00 PM
Last modified: 2011-08-12
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Abstract


Background
Online communities offer cancer patients a convenient way to obtain supportive care from peers however, little is known about how or why patients use them for this purpose. Cancer peer support providers are in a unique position to provide insight on the role of online communities in relation to other sources of supportive care.
This multi-method study aimed to identify the extent, nature and conditions of online community use among breast cancer survivors, known to be peer support providers.
Methods
We surveyed the attendees of a support group facilitator-training workshop provided by a national non-profit breast cancer support agency in Canada from September 2008 to May 2009 inclusive. Survey participants were a mean 56 years of age (SD 9.52), and a median of 5.9 years post-diagnosis (IQR 7.3), with no evidence of current disease. The response rate was 73% (n=73). The questionnaire asked about the extent to which participants used online communities, when, how often, and why, as well as why not. Descriptive statistics were used to summarize responses. A purposive sample of twelve survey participants with diverse disease characteristics were interviewed on how they used online communities as a resource, and how in their opinion, online communities compared to other sources of supportive care. Interview transcripts were analyzed using a descriptive interpretive approach involving constant comparison methods and thematic content analysis.
Results
Online communities were used by nearly one-third (31.5%) of the sample, on a daily or weekly basis (91.3%), most often during (73.9%) and shortly after (60.9%) breast cancer treatment for treatment information, symptom management, and emotional support. Reasons for non-use, reported by more than two-thirds of the sample, included lack of: need (48.0%), self-efficacy using online communities (30.0%), trust in Internet resources (24.0%), self-efficacy using computers (20.0%) and awareness (20.0%). Qualitative interviews revealed that online communities were used as a problem-focused coping strategy to address unmet supportive care needs, particularly during periods of stress, uncertainty, or insufficient local support. Although online communities were used to varying extents depending on the individual's needs and circumstances, they were regarded as a unique supportive care resource due to their availability, anonymity, limited commitment, quality of information and reassurance from similar others. An integrated framework of social support, health behaviour and technology adoption theories helps to explain the conditions that influence their use. Conclusions
Online communities may have the potential to fill gaps in supportive care services by addressing the unmet needs of breast cancer survivors, particularly during periods of stress and uncertainty. Targeted, peer-led strategies are required to promote awareness of the usefulness of online communities as supportive care resources, and to overcome barriers to their use. Further research should examine the use of online communities among typical breast cancer survivors.




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