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Supportive Care in Cancer

, Volume 21, Issue 5, pp 1253–1263 | Cite as

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

  • Jacqueline L. BenderEmail author
  • M. Carolina Jimenez-Marroquin
  • Lorraine E. Ferris
  • Joel Katz
  • Alejandro R. Jadad
Original Article

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.

Keywords

Online communities Breast cancer Health information Internet Social support 

Notes

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.

References

  1. 1.
    Fox S (2011) Social life of health information: Pew Internet and American Life Project, 5/2011. http://pewinternet.org/Reports/2011/Social-Life-of-Health-Info.aspx
  2. 2.
    Ziebland S, Wyke S (2012) Health and illness in a connected world: how might sharing experiences on the internet affect people's health? Milbank Q 90(2):219–49PubMedCrossRefGoogle Scholar
  3. 3.
    Statistics Canada (2010) Canada internet use survey: the daily. http://www.statcan.gc.ca/daily-quotidien/110525/dq110525b-eng.htm. Accessed April 6, 2012
  4. 4.
    Preece J (2000) Online communities: designing usability, supporting sociability. Wiley, New WorkGoogle Scholar
  5. 5.
    Bender JL, O'Grady L, Jadad AR (2008) Supporting cancer patients through the continuum of care: a view from the age of social networks and computer-mediated communication. Curr Oncol s107:s42–7Google Scholar
  6. 6.
    Davison KP, Pennebaker JW, Dickerson SS (2000) Who talks? The social psychology of illness support groups. Am Psychol 55(2):205–17PubMedCrossRefGoogle Scholar
  7. 7.
    Eysenbach G, Powell J, Englesakis M, Rizo C, Stern A (2004) Health related virtual communities and electronic support groups: systematic review of the effects of online peer to peer interactions. BMJ 328(7449):1166PubMedCrossRefGoogle Scholar
  8. 8.
    Hoybye MT, Johansen C, Tjornhoj-Thomsen T (2005) Online interaction. Effects of storytelling in an internet breast cancer support group. Psycho-Oncology 14(3):211–20PubMedCrossRefGoogle Scholar
  9. 9.
    Sharf BF (1997) Communicating breast cancer on-line: support and empowerment on the Internet. Women Health 26(1):65–84PubMedCrossRefGoogle Scholar
  10. 10.
    Shaw B, McTavish F, Hawkins R et al (2009) Experiences of women with breast cancer: exchanging support over the CHESS network. J Health Commun 5:135–159Google Scholar
  11. 11.
    Vilhauer RP (2009) Perceived benefits of online support groups for women with metastatic breast cancer. Women & Health 49(5):381–404CrossRefGoogle Scholar
  12. 12.
    van Uden-Kraan CF, Drossaert CH, Taal E et al (2008) Empowering processes and outcomes of participation in online support groups for patients with breast cancer, arthritis, or fibromyalgia. Qual Health Res 18(3):405–17PubMedCrossRefGoogle Scholar
  13. 13.
    Rogers S, Chen Q (2005) Internet community group participation: psychosocial benefits for women with breast cancer. J Comp Med Commun 10(4):1Google Scholar
  14. 14.
    Im EO, Chee W, Tsai HM et al (2005) Internet cancer support groups: a feminist analysis. Cancer Nurs 28(1):1–7PubMedCrossRefGoogle Scholar
  15. 15.
    Hoffman-Goetz L, Clarke JN (2000) Quality of breast cancer sites on the World Wide Web. Cdn J Public Health 91(4):281–4Google Scholar
  16. 16.
    Meric F, Bernstam EV, Mirza NQ et al (2002) Breast cancer on the world wide web: cross sectional survey of quality of information and popularity of websites. BMJ 324(7337):577–81PubMedCrossRefGoogle Scholar
  17. 17.
    Preece J (2001) Sociability and usability in online communities: determining and measuring success. Behav Inform Tech 20(5):347–356CrossRefGoogle Scholar
  18. 18.
    NetMarketShare.com (2009) Search engine market share for December 2009: http://www.netmarketshare.com/search-engine-market-share.aspx?qprid=4. Accessed December 15, 2009
  19. 19.
    Ussery B (2008) Google: average number of words per query have increased: Beu Blog 2008 http://www.beussery.com/blog/index.php/2008/02/google-average-number-of-words-per-query-have-increased/ Accessed December 15, 2009
  20. 20.
    Bender J, Jimenez-Marroquin MC, Jadad AR (2011) Seeking support on Facebook: a content analysis of breast cancer groups. J Med Internet Res 13(1):e16PubMedCrossRefGoogle Scholar
  21. 21.
    Anderson C, The long tail. Wired 2004; October 12:10: http://www.wired.com/wired/archive/12.10/tail.html. Accessed April 15, 2012
  22. 22.
    Deshpande A, Jadad AR (2006) Web 2.0: could it help move the health system into the 21st century. J Men’s Health Gend 3(4):332–336CrossRefGoogle Scholar
  23. 23.
    Bass SB (2003) How will Internet use affect the patient? A review of computer network and closed Internet-based system studies and the implications in understanding how the use of the Internet affects patient populations. J Health Psychol 8(1):25–38CrossRefGoogle Scholar
  24. 24.
    Walther JB, Pingree S, Hawkins RP (2005) Attributes of interactive online health information systems. J Med Internet Res 7(3):e33PubMedCrossRefGoogle Scholar
  25. 25.
    van Uden-Kraan CF, Drossaert CHC, Taal E (2010) Patient-initiated online support groups: motives for initiation, extent of success and success factors. J Telemed Telecare 16(1):30–34PubMedCrossRefGoogle Scholar
  26. 26.
    Kairam S, Wang DJ, Leskovec J (2012) The life and death of online groups: predicting group growth and longevity. Presented at WSDM, Seattle, Washington, USA Febrary 8–12, 2012Google Scholar
  27. 27.
    O'Grady LA, Bender JL, Wiljer D et al (2010) Promoting and participating in online health forums: a guide to facilitation and evaluation for health professionals. J Commun Healthcare 3(4):246–257CrossRefGoogle Scholar
  28. 28.
    Jadad AR, Gagliardi A (1998) Rating health information on the Internet: navigating to knowledge or to Babel? JAMA 279(8):611–4PubMedCrossRefGoogle Scholar
  29. 29.
    Gagliardi A, Jadad AR (2002) Examination of instruments used to rate quality of health information on the Internet: chronicle of a voyage with unclear destination. BMJ 324(7337):569–573PubMedCrossRefGoogle Scholar
  30. 30.
    Broom A (2005) Virtually he@lthy: The impact of internet use on disease experience and the doctor-patient relationship. Qual Health Res 15(3):325–45PubMedCrossRefGoogle Scholar
  31. 31.
    Jadad AR, Enkin MW, Glouberman S (2006) Are virtual communities good for our health? BMJ 332(7547):925–926PubMedCrossRefGoogle Scholar
  32. 32.
    Esquivel AF, Meric-Bernstam F, Bernstam EV (2006) Accuracy and self correction of information received from an internet breast cancer list: content analysis. BMJ 332(7547):939–42PubMedCrossRefGoogle Scholar
  33. 33.
    Salzer MS, Palmer SC, Kaplan K et al (2010) A randomized controlled study of internet peer-to-peer interactions among women newly diagnosed with breast cancer. Psychooncol 19(4):441–6CrossRefGoogle Scholar
  34. 34.
    Greenhalgh T, Russell R (2010) Why do evaluations of eHealth programs fail? An alternative set of guiding principles. PLoS Med 7(11):e1000360PubMedCrossRefGoogle Scholar
  35. 35.
    Bender JL, Wiljer D, To MJ et al (2012) Testicular cancer survivors’ supportive care needs and use of online support: a cross-sectional survey. J Suppor Care Cancer 20(11):2737–46. doi: 10.1007/s00520-012-1395-x CrossRefGoogle Scholar
  36. 36.
    Bender JL (2011) The web of support: a multi-method study examining the role of online communities as a source of peer-to-peer supportive care for breast cancer survivors: Doctoral Dissertation, University of TorontoGoogle Scholar
  37. 37.
    van Uden-Kraan CF, Drossaert CHC, Taal E et al (2010) Experiences and attitudes of Dutch rheumatologists and oncologists with regard to their patients' health related Internet use. Clin Rheumatol 29(11):1229–36PubMedCrossRefGoogle Scholar

Copyright information

© Springer-Verlag Berlin Heidelberg 2012

Authors and Affiliations

  • Jacqueline L. Bender
    • 1
    • 2
    • 3
    Email author
  • M. Carolina Jimenez-Marroquin
    • 2
  • Lorraine E. Ferris
    • 1
  • Joel Katz
    • 5
  • Alejandro R. Jadad
    • 1
    • 2
    • 3
    • 4
  1. 1.Dalla Lana School of Public HealthUniversity of TorontoTorontoCanada
  2. 2.Centre for Global eHealth InnovationUniversity Health NetworkTorontoCanada
  3. 3.ELLICSR Health Wellness and Cancer Survivorship CentreUniversity Health NetworkTorontoCanada
  4. 4.Department of Health Policy, Management and EvaluationUniversity of TorontoTorontoCanada
  5. 5.Department of PsychologyYork UniversityTorontoCanada

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