Social media for breast cancer survivors: a literature review

  • Angela L. Falisi
  • Kara P. Wiseman
  • Anna Gaysynsky
  • Jennifer K. Scheideler
  • Daniel A. Ramin
  • Wen-ying Sylvia Chou
Review

Abstract

Purpose

Social media may offer support to individuals who are navigating the complex and challenging experience of cancer. A growing body of literature has been published over the last decade exploring the ways cancer survivors utilize social media. This study aims to provide a systematic synthesis of the current literature in order to inform cancer health communication practice and cancer survivorship research.

Methods

Using PRISMA guidelines, four electronic databases were searched to retrieve publications on breast cancer and social media published between 2005 and 2015. The final sample included 98 publications (13 commentaries and reviews, 47 descriptive studies, and 38 intervention studies). Intervention studies were assessed for key features and outcome measures. Studies utilizing content analysis were further evaluated qualitatively.

Results

Online support groups were the most commonly studied platform, followed by interactive message boards and web forums. Limited research focuses on non-Caucasian populations. Psychosocial well-being was the most commonly measured outcome of interest. While social media engagement was assessed, few standardized measures were identified. Content analyses of social media interactions were prevalent, though few articles linked content to health outcomes.

Conclusions

The current literature highlights the impact and potential utility of social media for breast cancer survivors. Future studies should consider connecting social media engagement and content to psychosocial, behavioral, and physical health outcomes.

Implications for Cancer Survivors

Online groups and communities may improve the well-being of breast cancer survivors by providing opportunities to engage with wider social networks, connect with others navigating similar cancer experiences, and obtain cancer-related information. Researchers should consider the potential role of social media in addressing the unmet needs of breast cancer survivors, and particularly the implications for clinical and public health practice.

Keywords

Social media Online support Social support Breast cancer Literature review 

References

  1. 1.
    The American Cancer Society. ACS report: number of US cancer survivors expected to exceed 20 million by 2026. Available from: http://www.cancer.org/cancer/news/news/report-number-of-cancer-survivors-continues-to-grow. 2016.
  2. 2.
    The National Cancer Institute. SEER stat fact sheets: female breast cancer. http://seer.cancer.gov/statfacts/html/breast.html . 2016.
  3. 3.
    Stein KD, Syrjala KL, Andrykowski MA. Physical and psychological long-term and late effects of cancer. Cancer. 2008;112(S11):2577–92.CrossRefPubMedGoogle Scholar
  4. 4.
    Chirikos TN, Russell-Jacobs A, Cantor AB. Indirect economic effects of long-term breast cancer survival. Cancer Pract. 2002;10(5):248–55.CrossRefPubMedGoogle Scholar
  5. 5.
    Mehnert A, Koch U. Psychological comorbidity and health-related quality of life and its association with awareness, utilization, and need for psychosocial support in a cancer register-based sample of long-term breast cancer survivors. J Psychosom Res. 2008;64(4):383–91.CrossRefPubMedGoogle Scholar
  6. 6.
    Melisko M, Gradishar W, Moy B. Issues in breast cancer survivorship: optimal care, bone health, and lifestyle modifications. in American Society of Clinical Oncology educational book/ASCO. American Society of Clinical Oncology. Meeting. 2015.Google Scholar
  7. 7.
    Adler, NE., A.E. Page. Committee on psychosocial services to cancer patients/families in a community setting. 2008.Google Scholar
  8. 8.
    Alfano CM, Rowland JH. Recovery issues in cancer survivorship: a new challenge for supportive care. The Cancer Journal. 2006;12(5):432–43.CrossRefPubMedGoogle Scholar
  9. 9.
    McCabe MS, Bhatia S, Oeffinger KC, Reaman GH, Tyne C, Wollins DS, Hudson MM. American Society of Clinical Oncology statement: achieving high-quality cancer survivorship care. J Clin Oncol. 2013;31(5):631–40.Google Scholar
  10. 10.
    Klemm P, Bunnell D, Cullen M, Soneji R, Gibbons P, Holecek A. Online cancer support groups: a review of the research literature. Comput Inform Nurs. 2003;21(3):136–42.Google Scholar
  11. 11.
    Ziebland S. The importance of being expert: the quest for cancer information on the Internet. Soc Sci Med. 2004;59(9):1783–93.CrossRefPubMedGoogle Scholar
  12. 12.
    Ziebland S, Chapple A, Dumelow C, Evans J, Prinjha S, Rozmovits L. How the internet affects patients’ experience of cancer: a qualitative study. BMJ. 2004;328(7439):564.Google Scholar
  13. 13.
    Kaplan AM, Haenlein M. Users of the world, unite! The challenges and opportunities of Social Media. Business horizons. 2010;53(1):59–68.CrossRefGoogle Scholar
  14. 14.
    Thackeray R, Crookston BT, West JH. Correlates of health-related social media use among adults. J Med Internet Res. 2013;15(1):e21.CrossRefPubMedPubMedCentralGoogle Scholar
  15. 15.
    Moorhead SA, Hazlett DE, Harrison L, Carroll JK, Irwin A, Hoving C. A new dimension of health care: systematic review of the uses, benefits, and limitations of social media for health communication. J Med Internet Res. 2013;15(4):e85.Google Scholar
  16. 16.
    Korda H, Itani Z. Harnessing social media for health promotion and behavior change. Health Promot Pract. 2013;14(1):15–23.CrossRefPubMedGoogle Scholar
  17. 17.
    Merolli M, Gray K, Martin-Sanchez F. Health outcomes and related effects of using social media in chronic disease management: a literature review and analysis of affordances. J Biomed Inform. 2013;46(6):957–69.CrossRefPubMedGoogle Scholar
  18. 18.
    Koskan A, Klasko L, Davis SN, Gwede CK, Wells KJ, Kumar A, Lopez N, Meade CD. Use and taxonomy of social media in cancer-related research: a systematic review. Am J Public Health. 2014;104(7):e20–37.Google Scholar
  19. 19.
    Carlsson ME. Cancer patients seeking information from sources outside the health care system. Support Care Cancer. 2000;8(6):453–7.PubMedGoogle Scholar
  20. 20.
    Wallner LP, Martinez KA, Li Y, Jagsi R, Janz NK, Katz SJ, Hawley ST. Use of online communication by patients with newly diagnosed breast cancer during the treatment decision process. JAMA Oncol. 2016;2(12):1654–6.Google Scholar
  21. 21.
    McLaughlin M, Nam Y, Gould J, Pade C, Meeske KA, Ruccione KS, Fulk J. A videosharing social networking intervention for young adult cancer survivors. Comput Hum Behav. 2012;28(2):631–41.Google Scholar
  22. 22.
    Namkoong K, McLaughlin B, Yoo W, Hull SJ, Shah DV, Kim SC, Moon TJ, Johnson CN, Hawkins RP, McTavish FM, Gustafson DH. The effects of expression: how providing emotional support online improves cancer patients’ coping strategies. J Natl Cancer Inst Monogr. 2013;47:169–74.Google Scholar
  23. 23.
    Chung DS, Kim S. Blogging activity among cancer patients and their companions: uses, gratifications, and predictors of outcomes. J Am Soc Inf Sci Technol. 2008;59(2):297–306.CrossRefGoogle Scholar
  24. 24.
    The National Cancer Institute, NCI Dictionary of Cancer Terms, 2017. Available from: https://www.cancer.gov/publications/dictionaries/cancer-terms?cdrid=450125
  25. 25.
    Chou WY, Prestin A, Lyons C, Wen KY. Web 2.0 for health promotion: reviewing the current evidence. Am J Public Health. 2013;103(1):e9–18.Google Scholar
  26. 26.
    Paxton RJ, Nayak P, Taylor WC, Chang S, Courneya KS, Schover L, Hodges K, Jones LA. African-American breast cancer survivors’ preferences for various types of physical activity interventions: a Sisters Network Inc. web-based survey. J Cancer Surviv. 2014;8(1):31–8.Google Scholar
  27. 27.
    Changrani J, Lieberman M, Golant M, Rios P, Damman J, Gany F. Online cancer support groups: experiences with underserved immigrant Latinas. Prim Psychiatry. 2008;15(10):55–62.Google Scholar
  28. 28.
    McTavish FM, Gustafson DH, Owens BH, Wise M, Taylor JO, Apantaku FM, Berhe H, Thorson B. CHESS: an interactive computer system for women with breast cancer piloted with an under-served population. in Proceedings of the Annual Symposium on Computer Application in Medical Care. 1994. American Medical Informatics Association.Google Scholar
  29. 29.
    Han JY, Kim JH, Yoon HJ, Shim M, McTavish FM, Gustafson DH. Social and psychological determinants of levels of engagement with an online breast cancer support group: posters, lurkers, and nonusers. J Health Commun. 2012;17(3):356–71.Google Scholar
  30. 30.
    Kim E, Han JY, Moon TJ, Shaw B, Shah DV, McTavish FM, Gustafson DH. The process and effect of supportive message expression and reception in online breast cancer support groups. Psycho-Oncology. 2012;21(5):531–40.Google Scholar
  31. 31.
    Klemm P. Effects of online support group format (moderated vs peer-led) on depressive symptoms and extent of participation in women with breast cancer. CIN: Computers, Informatics, Nursing. 2012;30(1):9–18.PubMedGoogle Scholar
  32. 32.
    Lepore SJ, Buzaglo JS, Lieberman MA, Golant M, Greener JR, Davey A. Comparing standard versus prosocial internet support groups for patients with breast cancer: a randomized controlled trial of the helper therapy principle. J Clin Oncol. 2014;32(36):4081–6.Google Scholar
  33. 33.
    Bantum EOC, Albright CL, White KK, Berenberg JL, Layi G, Ritter PL, Laurent D, Plant K, Lorig K. Surviving and thriving with cancer using a Web-based health behavior change intervention: randomized controlled trial. J Med Internet Res. 2014;16(2):e54.Google Scholar
  34. 34.
    Shaw B, Han JY, Kim E, Gustafson D, Hawkins R, Cleary J, McTavish F, Pingree S, Eliason P, Lumpkins C. Effects of prayer and religious expression within computer support groups on women with breast cancer. Psycho-Oncology. 2007;16(7):676–87.Google Scholar
  35. 35.
    Lieberman M. The role of insightful disclosure in outcomes for women in peer-directed breast cancer groups: a replication study. Psycho-Oncology. 2007;16(10):961–4.CrossRefPubMedGoogle Scholar
  36. 36.
    Chen Z, Koh PW, Ritter PL, Lorig K, Bantum EO, Saria S.  Dissecting an online intervention for cancer survivors four exploratory analyses of Internet engagement and its effects on health status and health behaviors. Health Educ Behav. 2015;42(1):32–45.Google Scholar
  37. 37.
    Grau I, Grajales FJ III, Gene-Badia J, Siso A, de Semir M. Forumclinic: the shaping of virtual communities to assist patients with chronic diseases. Enabling Health and Healthcare Through ICT: Available, Tailored and Closer. 2013;183:271.Google Scholar
  38. 38.
    Shaw BR, Hawkins R, Arora N, McTavish FI, Pingree S, Gustafson DH. An exploratory study of predictors of participation in a computer support group for women with breast cancer. CIN: Computers, Informatics, Nursing. 2006;24(1):18–27.Google Scholar
  39. 39.
    Owen JE, Bantum EO, Gorlick A, Stanton AL. Engagement with a social networking intervention for cancer-related distress. Ann Behav Med. 2015;49(2):154–64.Google Scholar
  40. 40.
    Stephen J, Collie K, McLeod D, Rojubally A, Fergus K, Speca M, Turner J, Taylor-Brown J, Sellick S, Burrus K, Elramly M. Talking with text: communication in therapist-led, live chat cancer support groups. Soc Sci Med. 2014;104:178–86.Google Scholar
  41. 41.
    Huang K-Y, Chengalur-Smith I, Ran W. Not just for support: companionship activities in healthcare virtual support communities. Commun Assoc Inf Syst. 2014;34(29):561–94.Google Scholar
  42. 42.
    Wang Y-C, Kraut RE, Levine JM. Eliciting and receiving online support: using computer-aided content analysis to examine the dynamics of online social support. J Med Internet Res. 2015;17(4):e99.CrossRefPubMedPubMedCentralGoogle Scholar
  43. 43.
    Rubenstein EL. Things my doctor never told me: bridging information gaps in an online community. Proceedings of the American Society for Information Science and Technology. 2012;49(1):1–10.CrossRefGoogle Scholar
  44. 44.
    Harris LN, Cleary EH, Stanton AL. Project connect online: user and visitor experiences of an Internet-based intervention for women with breast cancer. Psycho-Oncology. 2015;24(9):1145–51.CrossRefPubMedGoogle Scholar
  45. 45.
    Fox S, Purcell K. Social media and health. Pew Research Center, 2010. Available from: http://www.pewinternet.org/2010/03/24/social-media-and-health/
  46. 46.
    Abramson K, Keefe B, Chou WYS. Communicating about cancer through Facebook: a qualitative analysis of a breast cancer awareness page. J Health Commun. 2015;20(2):237–43.CrossRefPubMedGoogle Scholar
  47. 47.
    Fox S. Cancer 2.0. Pew Research Center, 2010. Available from: http://www.pewinternet.org/2010/12/13/cancer-2-0/
  48. 48.
    Glanz K, Bishop DB. The role of behavioral science theory in development and implementation of public health interventions. Annu Rev Public Health. 2010;31:399–418.CrossRefPubMedGoogle Scholar
  49. 49.
    Lieberman MA, Goldstein BA. Not all negative emotions are equal: the role of emotional expression in online support groups for women with breast cancer. Psycho-Oncology. 2006;15(2):160–8.CrossRefPubMedGoogle Scholar
  50. 50.
    Bowen DJ, Alfano CM, McGregor BA, Kuniyuki A, Bernstein L, Meeske K, Baumgartner KB, Fetherolf J, Reeve BB, Smith AW, Ganz PA.  Possible socioeconomic and ethnic disparities in quality of life in a cohort of breast cancer survivors. Breast Cancer Res Treat. 2007;106(1):85–95.Google Scholar
  51. 51.
    Newman LA, Griffith KA, Jatoi I, Simon MS, Crowe JP, Colditz GA. Meta-analysis of survival in African American and white American patients with breast cancer: ethnicity compared with socioeconomic status. J Clin Oncol. 2006;24(9):1342–9.Google Scholar
  52. 52.
    Han JY, Hou J, Kim E, Gustafson DH. Lurking as an active participation process: a longitudinal investigation of engagement with an online cancer support group. Health Commun. 2014;29(9):911–23.Google Scholar
  53. 53.
    Han JY, Shaw BR, Hawkins RP, Pingree S, McTavish F, Gustafson DH. Expressing positive emotions within online support groups by women with breast cancer. J Health Psychol. 2008;13(8):1002–7.Google Scholar
  54. 54.
    Kim E, Han JY, Shah D, Shaw B, McTavish F, Gustafson DH, Fan D. Predictors of supportive message expression and reception in an interactive cancer communication system. J Health Commun. 2011;16(10):1106–21.Google Scholar
  55. 55.
    Lieberman MA. Effects of disease and leader type on moderators in online support groups. Comput Hum Behav. 2008;24(5):2446–55.CrossRefGoogle Scholar
  56. 56.
    Radin P. “To me, it’s my life”: medical communication, trust, and activism in cyberspace. Soc Sci Med. 2006;62(3):591–601.CrossRefPubMedGoogle Scholar
  57. 57.
    Rimer BK, Lyons EJ, Ribisl KM, Bowling JM, Golin CE, Forlenza MJ, Meier A. How new subscribers use cancer-related online mailing lists. J Med Internet Res. 2005;7(3):e32.Google Scholar
  58. 58.
    Shim M, Cappella JN, Han JY. How does insightful and emotional disclosure bring potential health benefits? Study based on online support groups for women with breast cancer. J Commun. 2011;61(3):432–54.CrossRefPubMedPubMedCentralGoogle Scholar
  59. 59.
    Han JY, Shah DV, Kim E, Namkoong K, Lee SY, Moon TJ, Cleland R, Bu QL, McTavish FM, Gustafson DH. Empathic exchanges in online cancer support groups: distinguishing message expression and reception effects. Health Commun. 2011;26(2):185–97.Google Scholar
  60. 60.
    Lewallen AC, Owen JE, Bantum EO, Stanton AL. How language affects peer responsiveness in an online cancer support group: implications for treatment design and facilitation. Psycho-Oncology. 2014;23(7):766–72.Google Scholar
  61. 61.
    Lieberman MA, Winzelberg A. The relationship between religious expression and outcomes in online support groups: a partial replication. Comput Hum Behav. 2009;25(3):690–4.CrossRefGoogle Scholar
  62. 62.
    Morris BA, Lepore SJ, Wilson B, Lieberman MA, Dunn J, Chambers SK. Adopting a survivor identity after cancer in a peer support context. J Cancer Surviv. 2014;8(3):427–36.Google Scholar
  63. 63.
    Portier K, Greer GE, Rokach L, Ofek N, Wang Y, Biyani P, Yu M, Banerjee S, Zhao K, Mitra P, Yen J. Understanding topics and sentiment in an online cancer survivor community. JNCI Monographs. 2013;47:195–8.Google Scholar
  64. 64.
    Seçkin G. I am proud and hopeful: age-based comparisons in positive coping affect among women who use online peer-support. J Psychosoc Oncol. 2011;29(5):573–91.CrossRefPubMedGoogle Scholar
  65. 65.
    Setoyama Y, Yamazaki Y, Namayama K. Benefits of peer support in online Japanese breast cancer communities: differences between lurkers and posters. J Med Internet Res. 2011;13(4):e122.CrossRefPubMedPubMedCentralGoogle Scholar
  66. 66.
    Shaw BR, Han JY, Baker T, Witherly J, Hawkins RP, McTavish F, Gustafson DH. How women with breast cancer learn using interactive cancer communication systems. Health Educ Res. 2007;22(1):108–19.Google Scholar
  67. 67.
    Shaw BR, Han JY, Hawkins RP, McTavish FM, Gustafson DH. Communicating about self and others within an online support group for women with breast cancer and subsequent outcomes. J Health Psychol. 2008;13(7):930–9.Google Scholar
  68. 68.
    Stanton AL, Thompson EH, Crespi CM, Link JS, Waisman JR. Project connect online: randomized trial of an internet-based program to chronicle the cancer experience and facilitate communication. J Clin Oncol. 2013;31(27):3411–7.Google Scholar
  69. 69.
    Stephen J, Rojubally A, MacGregor K, McLeod D, Speca M, Taylor–Brown J, Fergus K, Collie K, Turner J, Sellick S, Mackenzie G. Evaluation of CancerChatCanada: a program of online support for Canadians affected by cancer. Curr Oncol. 2013;20(1):39–47.Google Scholar
  70. 70.
    Vilhauer RP, McClintock MK, Matthews AK. Online support groups for women with metastatic breast cancer: a feasibility pilot study. J Psychosoc Oncol. 2010;28(5):560–86.CrossRefPubMedGoogle Scholar
  71. 71.
    Wakelin K, Street AF. An online expressive writing group for people affected by cancer: a virtual third place. Aust Soc Work. 2015;68(2):198–211.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media New York (outside the USA) 2017

Authors and Affiliations

  • Angela L. Falisi
    • 1
  • Kara P. Wiseman
    • 1
  • Anna Gaysynsky
    • 2
  • Jennifer K. Scheideler
    • 1
  • Daniel A. Ramin
    • 1
  • Wen-ying Sylvia Chou
    • 1
  1. 1.Division of Cancer Control and Population SciencesNational Cancer InstituteRockvilleUSA
  2. 2.ICF InternationalRockvilleUSA

Personalised recommendations