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Online communities for breast cancer survivors: a review and analysis of their characteristics and levels of use

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Abstract

Purpose

Online communities have been heralded as one of the most promising health resources on the Internet. The purpose of this study was to identify the characteristics and levels of use of online communities for breast cancer survivors.

Methods

Using Google, we identified websites with a string of computer-mediated communication terms and individual queries of three to five words of online community terms. This was complemented by a review of website resource lists and personal libraries. Two reviewers independently extracted information on their general characteristics and number of members and message board posts. A coding scheme guided content analysis.

Results

We found 111 websites. Most sites (n = 64, 65.8 %) had a broad focus (e.g., health, cancer, or general). One third (n = 38, 34.2 %) were exclusive to breast cancer and 11 catered to specific disease characteristics. The majority were American (n = 79, 75.2 %), nonprofit (55.0 %), and moderated (69.5 %). Most moderators (85.7 %) were staff or community members; eight sites were moderated by health professionals. Greater than one-third of sites (n = 40, 36 %) were initiated by breast cancer survivors or loved ones. Breast cancer-specific sites contained a total of 4,186,275 posts. One-third (n = 10) contained 93.4 % of posts, displaying over 100,000 posts each. As of April 3, 2012, eight sites were discontinued.

Conclusions

There is a wide range of online communities available for breast cancer survivors with extensive archives of personal illness experiences. Future efforts should focus on identifying the factors that determine their success and effectiveness.

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Acknowledgments

This work is a component of JLB’s PhD thesis at the University of Toronto. JLB has full control over all primary data and agrees to allow the journal to review the data if requested. JLB wishes to acknowledge the guidance of her PhD thesis committee: LE Ferris PhD CPsych LLM (ADR) LLM (Admin Law), J Katz PhD CPsych, and AR Jadad MD DPhil FRCPC. This work was supported by CIHR Strategic Doctoral Fellowships in Health Care, Technology and Place, and Cell Signaling in Mucosal Inflammation and Pain.

Conflict of interest

None.

Author information

Authors and Affiliations

  1. Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, Canada

    Jacqueline L. Bender, Lorraine E. Ferris & Alejandro R. Jadad

  2. Centre for Global eHealth Innovation, University Health Network, 190 Elizabeth Street, Toronto, M5G 2C4, Ontario, Canada

    Jacqueline L. Bender, M. Carolina Jimenez-Marroquin & Alejandro R. Jadad

  3. ELLICSR Health Wellness and Cancer Survivorship Centre, University Health Network, Toronto, Ontario, Canada

    Jacqueline L. Bender & Alejandro R. Jadad

  4. Department of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada

    Alejandro R. Jadad

  5. Department of Psychology, York University, Toronto, Ontario, Canada

    Joel Katz

Authors
  1. Jacqueline L. Bender
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  2. M. Carolina Jimenez-Marroquin
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  3. Lorraine E. Ferris
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  4. Joel Katz
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  5. Alejandro R. Jadad
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Corresponding author

Correspondence to Jacqueline L. Bender.

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Bender, J.L., Jimenez-Marroquin, M.C., Ferris, L.E. et al. Online communities for breast cancer survivors: a review and analysis of their characteristics and levels of use. Support Care Cancer 21, 1253–1263 (2013). https://doi.org/10.1007/s00520-012-1655-9

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  • DOI: https://doi.org/10.1007/s00520-012-1655-9

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