Social media for breast cancer survivors: a literature review
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.
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.
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.
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.
KeywordsSocial media Online support Social support Breast cancer Literature review
- 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.The National Cancer Institute. SEER stat fact sheets: female breast cancer. http://seer.cancer.gov/statfacts/html/breast.html . 2016.
- 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.Adler, NE., A.E. Page. Committee on psychosocial services to cancer patients/families in a community setting. 2008.Google Scholar
- 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.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
- 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
- 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
- 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
- 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.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.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
- 24.The National Cancer Institute, NCI Dictionary of Cancer Terms, 2017. Available from: https://www.cancer.gov/publications/dictionaries/cancer-terms?cdrid=450125
- 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.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.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.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.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.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
- 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.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.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
- 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.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.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.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.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.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
- 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/
- 47.Fox S. Cancer 2.0. Pew Research Center, 2010. Available from: http://www.pewinternet.org/2010/12/13/cancer-2-0/
- 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.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.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.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.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
- 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
- 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.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
- 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.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
- 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.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.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.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