Meanings of Breast Cancer Survivorship Among Members of Ethnically-Identified Support Groups

K. E. Dyer, J. Coreil

Abstract


Research on both cancer survivorship and support needs has been limited in its attention to survivors from culturally-diverse communities.  This study examined the perspectives of members and leaders of ethnically-identified breast cancer support groups regarding the meanings and expectations attached to survivorship.  Semi-structured interviews were conducted with 38 African American and Latina survivors in Central Florida.  Participant narratives invoked themes of spiritual renewal and deepening religious faith, and deemphasized individual responsibility for personal change.  Participants emphasized the importance of shared cultural identity in shaping the survivor experience, and some Latina women drew parallels between survivorship and the challenges of migration to a new country.  An unwavering display of optimism was held to be paramount.  These themes are interpreted within the framework of the interplay between dominant societal discourses of survivorship and locally-constructed meanings.  Findings underscore the importance for healthcare providers to be cognizant and respectful of diverse perspectives on illness.

Keywords


Cancer; survivorship; ethnicity; illness narratives; support groups

Full Text:

PDF

References


Author (2004)

Author (2012)

Author (2013)

Bell, K. (2014). The breast-cancer-ization of cancer survivorship: Implications for experiences of the disease. Social Science and Medicine, 110, 56-63. http://dx.doi.org/10.1016/j.socscimed.2014.03.031

Bernard, H.R., & Ryan, G.W. (2006). Analyzing Qualitative Data: Systematic Approaches. Los Angeles: SAGE.

Brody, J. (2007). Thriving after life’s bum rap. The New York Times, 14 August. Available at: http://nyti.ms/1moFc4v

Chavez, J., Haddock, C.M., & Rubin, L.R. (2014). Contextualizing African American and Latina women’s postmastectomy social support experiences: Support groups and beyond. Women & Therapy, 37, 242-263.doi 10.1080/02703149.2014.897551

Chavez, L.R., Hubbell, F.A., McMullin, J.M., Martinez, R.G., & Mishra, S.I. (1995). Structure and meaning in models of breast and cervical cancer risk factors: A comparison of perceptions among Latinas, Anglo women, and physicians. Medical Anthropology Quarterly, 9(1), 40-74. doi: 10.1525/maq.1995.9.1.02a00030

Collins, L. (2007). Breast cancer, biosociality, and wilderness therapy: The practice of remaking selfhood in mountain climbing. Thinking Gender Papers, UCLA Center for the Study of Women. Available at: http://escholarship.org/uc/item/4r04g58z (accessed 18 May 2014).

Coreil, J. (1995). Group interview methods in community health research. Medical Anthropology, 16, 193-210. doi: 10.1080/01459740.1994.9966115

Deimling, G.T., Bowman, K.F., & Wagner, L.J. (2007). Cancer survivorship and identity among long-term survivors. Cancer Investigation, 25, 758-765. http://dx.doi.org/10.1080/07357900600896323

Delinsky, B. (2001). Uplift: Secrets from the Sisterhood of Breast Cancer Survivors. New York: Washington Square Press.

DiGiacomo, S.M., & Sumalla, E.C. (2012). Del escencialismo biológico a la experiencia encarnada: El cáncer como aprendizaje. Iglesia Viva, 252(Oct-Dec): 37-56.

Dressler, W., Oths, K., & Gravlee, C. (2005). Race and ethnicity in public health research: Models to explain health disparities. Annual Review of Anthropology, 34: 231-252. doi: 10.1146/annurev.anthro.34.081804.120505

Ehrenreich, B. (2001). Welcome to Cancerland. Harper’s Bazaar, November, 43-53. Available at: https://harpers.org/archive/2001/11/welcome-to-cancerland/ accessed 17 March 2016).

Ehrenreich, B. (2009). Bright-Sided: How the Relentless Promotion of Positive Thinking has Undermined America. New York: Metropolitan Books.

Erwin, D.O., Spatz, T.S., Stotts, R.C., Hollenberg, J.A., & Deloney, L.A. (1996). Increasing mammography and breast self-examination in African American women using the Witness Project model. Journal of Cancer Education, 11(4), 210-215.

Frank, A. (1997). The Wounded Storyteller. Chicago: University of Chicago Press.

Frank, A. (2003). Survivorship as craft and conviction:Reflections on research in progress. Qualitative Health Research, 13(2), 247-255. doi: 10.1177/1049732302239601

Frank, A. (2012a). Survivorship: In every expression a crack. In Dresser, R. (ed) Malignant: Medical Ethicists Confront Cancer. Oxford: Oxford University Press, pp. 195-209.

Frank, A. (2012b). Support, advocacy and the selves of people with cancer. In Dresser, R. (ed) Malignant: Medical Ethicists Confront Cancer. Oxford: Oxford University Press, pp. 166-178.

Good, M.J., Good, B.J., Schaffer, C., & Lind, S.E. (1990). American oncology and the discourse on hope. Culture, Medicine and Psychiatry, 14(1), 59-79. doi: 10.1007/bf00046704

Gray, R., Fitch, M., Davis, C., & Phillips, C. (1997). A qualitative study of breast cancer self-help groups. Psycho-Oncology, 6, 279-289.doi: 10.1002/(sici)1099-1611(199712)6:4<279::aid-pon280>3.3.co;2-s

Gray, R.E., & Doan, D.E. (1990). Heroic self-healing and cancer. Journal of Palliative Care, 6(1), 32-41.

Honea, C. (1997). The First Year of the Rest of your Life. Cleveland: Pilgrim Press.

Hoffman-Goetz, L. (1999). Cancer experiences of African-American women as portrayed in popular mass magazines. Psycho-Oncology, 8, 36-45. doi: 10.1002/(sici)1099-1611(199901/02)8:1<36::aid-pon330>3.0.co;2-8

Hunt, L. (1998). Moral reasoning and the meaning of cancer. Medical Anthropology Quarterly, 12(3), 298-318.doi: 10.1525/maq.1998.12.3.298

Hydén, L.C., & Brockmeier, J. (2008). Introduction: From the retold to the performed story. In Hydén, L. C. & Brockmeier, J. (eds) Health, Illness, and Culture: Broken Narratives. New York: Routledge, pp. 1-15.

Kaiser, K. (2008). The meaning of the survivor identity for women with breast cancer. Social Science and Medicine, 67, 79-87. doi:10.1016/j.socscimed.2008.03.036

King, S. (2006). Pink Ribbons, Inc. Minneapolis: University of Minnesota Press.

LeCompte, M.D., & Schensul, J.J. (2010). Designing and Conducting Ethnographic Research. Lanham: AltaMira Press.

Little, M., Jordens, C.F.C., & Sayers, E.J. (2002). Survivorship and discourses of identity. Psycho-Oncology, 11, 170-178. doi:10.1002/pon.549

Lincoln, Y.S., & Guba, E.G. (1985). Naturalistic Inquiry. Newbury Park: Sage Publications. doi: 10.1016/0147-1767(85)90062-8

Mathews, H. (2008). Cancer support groups and advocacy: One size doesn't fit all. In McMullin, J. & Weiner, D. (eds) Confronting Cancer: Metaphors, Advocacy and Anthropology. Santa Fe: SAR Press, pp. 43-62.

Mathews, H. (2000). Negotiating cultural consensus in a breast cancer self-help group. Medical Anthropology Quarterly, 14(3), 394-413. doi: 10.1525/maq.2000.14.3.394

Michalec, B., Van Willigen, M., Wilson, K., Schreier, A., & Wililams, S. (2004). The race gap in support group participation by breast cancer survivors: Real or artifact? Evaluation Review, 28(2), 123-143. doi: 10.1177/0193841X03260313

Moore, R. (2001). African American women and breast cancer: Notes from a study of narrative. Cancer Nursing, 24(1), 35-43. doi: 10.1097/00002820-200102000-00006

National Coalition for Cancer Survivorship (NCCS). (2010). About the organization. Available at: http://www.canceradvocacy.org.

Nelson, J., & Macias, T. (2008). Living with a white disease: Women of colour and their engagement with breast cancer information. Women's Health and Urban Life, 7(1), 20-39. Available at: http://hdl.handle.net/1807/10368

Newman, L.A., & Martin, I.K. (2007). Disparities in breast cancer. Current Problems in Cancer, 31(3), 134-156. doi:10.1016/j.currproblcancer.2007.01.003

Park, C., Zlateva, I., & Blank, T. (2009). Self-identity after cancer: “Survivor,” “victim,” “patient,” and “person with cancer.” Journal of General Internal Medicine, 24(Suppl 2), 430-435. doi: 10.1007/s11606-009-0993-x

Pertl, M.M., Quigley, J., & Hevey, J. (2014). “I’m not complaining because I’m alive”: Barriers to the emergence of a discourse of cancer-related fatigue. Psychology and Health, 29(2), 141-161. http://dx.doi.org/10.1080/08870446.2013.839792

Rappaport, J. (2000). Community narratives: Tales of terror and joy. American Journal of Community Psychology, 28(1), 1-24. doi: 10.1023/a:1005161528817

Segal, J. (2012). Cancer experience and its narration: An accidental study. Literature and Medicine, 30(2), 292-318. doi: 10.1353/lm.2012.0017

Shavers, V., & Brown, M.L. (2002). Racial and ethnic disparities in the receipt of cancer treatment. Journal of the

National Cancer Institute, 94(5), 334-357.doi: 10.1093/jnci/94.5.334

Sinding, C., & Gray, R. (2005). Active aging–spunky survivorship? Discourses and experiences of the years beyond breast cancer. Journal of Aging Studies, 19, 147–161. doi:10.1016/j.jaging.2004.05.001

Somers, M.R. (1994). The narrative constitution of identity: A relational and network approach. Theory and Society, 23, 605-649.doi: 10.1007/bf00992905

Stoller, P. (2004). Stranger in the Village of the Sick. Boston: Beacon.

Wescott, P.H., Reifler, E.J., Sepucha, K., & Park, E.R. (2005). Breast cancer treatment decision-making: Does the sisterhood of breast cancer transcend culture? In: Kronenfeld, J.J. (ed) Health Care Services, Racial and Ethnic Minorities and Underserved Populations. Bingley, UK: Emerald Group, pp. 35-53.

Wilkinson, S., & Kitzinger, C. (2000). Thinking differently about thinking positive: A discursive approach to cancer patients’ talk. Social Science and Medicine, 50, 797-811. Available at: www.elsevier.com/locate/socscimed




DOI: https://doi.org/10.5195/hcs.2017.213

Refbacks

  • There are currently no refbacks.