Abstract
Purpose
Most breast cancer (BC) survivorship research focuses on the general population of survivors. Scant research investigates the potentially unique experiences of minorities, especially during and after the difficult transition from primary treatment to post-treatment. This qualitative study explored African American BC survivors’ and caregivers’ quality-of-life in the post-treatment period with a focus on social and spiritual well-being.
Methods
Participants included a convenience sample of African American women with stage I–III BC (N = 23) who completed treatment 6–24 months before enrollment. Primary caregivers (N = 22) included friends, spouses and other family members (21 complete dyads). Participants completed separate semi-structured telephone interviews. Template analysis was used to evaluate themes related to religiousness and spirituality, both across and within dyads.
Results
After treatment, religiousness and spirituality played a major role in both survivors’ and caregivers’ lives by: (1) providing global guidance, (2) guiding illness management efforts and (3) facilitating recovery. Participants described a spiritual connectedness with God and others in their social networks. Dyad members shared the goal of keeping a positive attitude and described positive growth from cancer. Few future concerns were expressed due to the belief that survivors were healed and “done” with cancer. Beyond practical and emotional support, provision of spiritual assistance was common.
Conclusions
Results highlight the principal, positive role of religiousness and spirituality for African American BC survivors and caregivers after treatment. Findings emphasize the need to assess the importance of religious and spiritual beliefs and practices, and if appropriate, to provide resources that promote spiritual well-being.
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References
Howlader, N., Noone, N. A., Krapcho, M., Neyman, N., Aminou, R., Altekruse, S. F., Kosary, C. L., Ruhl, J., Tatalovich, Z., Cho, H., Mariotto, A., Eisner, M. P., Lewis, D. R., Chen, H. S., Feuer, E. J., & Cronin, K. A. (eds). (2012). SEER cancer statistics review, 1975–2009 (vintage 2009 populations), National Cancer Institute. Bethesda, MD. http://seer.cancer.gov/csr/1975_2009_pops09/, based on November 2011 SEER data submission, posted to the SEER web site, 2012.
American Cancer Society. (2013). Cancer facts and figures 2013. Atlanta: American Cancer Society.
American Cancer Society. (2013). Cancer facts and figures for African Americans 2013–2014. Atlanta: American Cancer Society.
Hewitt, M. E., Greenfield, S., & Stovall, E. (2006). From cancer patient to cancer survivor: Lost in translation. Washington, DC: The National Academies Press.
Stanton, A. L., Ganz, P. A., Rowland, J. H., Meyerowitz, B. E., Krupnick, J. L., & Sears, S. R. (2005). Promoting adjustment after treatment for cancer. Cancer, 104(11 Suppl), 2608–2613. doi:10.1002/cncr.21246.
Kornblith, A. B., Herndon, J. E, 2nd, Weiss, R. B., Zhang, C., Zuckerman, E. L., Rosenberg, S., et al. (2003). Long-term adjustment of survivors of early-stage breast carcinoma, 20 years after adjuvant chemotherapy. Cancer, 98(4), 679–689. doi:10.1002/cncr.11531.
Aziz, N. M., & Rowland, J. H. (2002). Cancer survivorship research among ethnic minority and medically underserved groups. Oncology Nursing Forum, 29(5), 789–801. doi:10.1188/02.ONF.789-801.
Russell, K. M., Von Ah, D. M., Giesler, R. B., Storniolo, A. M., & Haase, J. E. (2008). Quality of life of African American breast cancer survivors: How much do we know? Cancer Nursing, 31(6), E36–E45. doi:10.1097/01.NCC.0000339254.68324.d7.
Jones, L. A., & Chilton, J. A. (2002). Impact of breast cancer on African American women: Priority areas for research in the next decade. American Journal of Public Health, 92(4), 539–542.
Farmer, B. J., & Smith, E. D. (2002). Breast cancer survivorship: Are African American women considered? A concept analysis. Oncology Nursing Forum, 29(5), 779–787. doi:10.1188/02.ONF.779-787.
Cella, D. F., & Tulsky, D. S. (1993). Quality of life in cancer: Definition, purpose, and method of measurement. Cancer Investigation, 11(3), 327–336.
Ferrell, B. R., Dow, K. H., Leigh, S., Ly, J., & Gulasekaram, P. (1995). Quality of life in long-term cancer survivors. Oncology Nursing Forum, 22(6), 915–922.
Ferrell, B. R., Dow, K. H., & Grant, M. (1995). Measurement of the quality of life in cancer survivors. Quality of Life Research, 4(6), 523–531.
Leak, A., Hu, J., & King, C. R. (2008). Symptom distress, spirituality, and quality of life in African American breast cancer survivors. Cancer Nursing, 31(1), E15–E21.
Ashing-Giwa, K. T., Padilla, G., Tejero, J., Kraemer, J., Wright, K., Coscarelli, A., et al. (2004). Understanding the breast cancer experience of women: A qualitative study of African American, Asian American, Latina and Caucasian cancer survivors. Psychooncology, 13(6), 408–428. doi:10.1002/pon.750.
Ashing-Giwa, K., Ganz, P. A., & Petersen, L. (1999). Quality of life of African-American and white long term breast carcinoma survivors. Cancer, 85(2), 418–426.
Janz, N. K., Mujahid, M. S., Hawley, S. T., Griggs, J. J., Alderman, A., Hamilton, A. S., et al. (2009). Racial/ethnic differences in quality of life after diagnosis of breast cancer. Journal of Cancer Survivorship, 3(4), 212–222. doi:10.1007/s11764-009-0097-y.
Friedman, L. C., Kalidas, M., Elledge, R., Changm, J., Romero, C., Husain, I., et al. (2006). Optimism, social support and psychosocial functioning among women with breast cancer. Psychooncology, 15(7), 595–603. doi:10.1002/pon.992.
Giedzinska, A. S., Meyerowitz, B. E., Ganz, P. A., & Rowland, J. H. (2004). Health-related quality of life in a multiethnic sample of breast cancer survivors. Annals of Behavioral Medicine, 28(1), 39–51. doi:10.1207/s15324796abm2801_6.
Paskett, E. D., Alfano, C. M., Davidson, M. A., Andersen, B. L., Naughton, M. J., Sherman, A., et al. (2008). Breast cancer survivors’ health-related quality of life: Racial differences and comparisons with noncancer controls. Cancer, 113(11), 3222–3230. doi:10.1002/cncr.23891.
Bourjolly, J. N., & Hirschman, K. B. (2001). Similarities in coping strategies but differences in sources of support among African American and white women coping with breast cancer. Journal of Psychosocial Oncology, 19(2), 17–38.
McCubbin, H. I., Thompson, E. A., Thompson, A. I., & Futrell, J. A. (Eds.). (1998). Resiliency in African American families. Thousand Oaks, CA: Sage Publications.
Boyd-Franklin, N. (2003). Black families in therapy: Understanding the African American experience. New York: Guilford Publishing.
Gibson, L. M., & Hendricks, C. S. (2006). Integrative review of spirituality in African American breast cancer survivors. Association of Black Nursing Faculty Journal, 17(2), 67–72.
National Comprehensive Cancer Network practice guidelines in oncology: Breast cancer V.2.2013. (2013). Accessed April 5, 2013, from http://www.nccn.org/professionals/physician_gls/pdf/breast.pdf.
Heiney, S. P., Hazlett, L. J., Weinrich, S. P., Wells, L. M., Adams, S. A., Underwood, S. M., et al. (2011). Antecedents and mediators of community connection in African American women with breast cancer. Research and Theory for Nursing Practice, 25(4), 252–270.
Heiney, S. P., Millon Underwood, S., Tavakoli, A., Arp Adams, S., Wells, L. M., & Bryant, L. H. (2012). Randomized trial of therapeutic group by teleconference: African American women with breast cancer. Cancer, 118(15), 3822–3832. doi:10.1002/cncr.26676.
Ferrell, B. R., Grant, M., Funk, B., Otis-Green, S., & Garcia, N. (1997). Quality of life in breast cancer. Part I: Physical and social well-being. Cancer Nursing, 20(6), 398–408.
Ferrell, B. R., Grant, M., Funk, B., Otis-Green, S., & Garcia, N. (1998). Quality of life in breast cancer. Part II: Psychological and spiritual well-being. Cancer Nursing, 21(1), 1–9.
Strauss, A., & Corbin, J. (1990). Basics of qualitative research: Grounded theory procedures and techniques. Newbury Park, CA: Sage.
Schreiber, J. A., & Brockopp, D. Y. (2012). Twenty-five years later: What do we know about religion/spirituality and psychological well-being among breast cancer survivors? A systematic review. Journal of Cancer Survivorship, 6(1), 82–94. doi:10.1007/s11764-011-0193-7.
Tate, J. D. (2011). The role of spirituality in the breast cancer experiences of African American women. Journal of Holistic Nursing, 29(4), 249–255. doi:10.1177/0898010111398655.
Taylor, E. J. (2001). Spirituality, culture, and cancer care. Seminars in Oncology Nursing, 17(3), 197–205.
Ferrell, B. R., Grant, M. M., Funk, B., Otis-Green, S., & Garcia, N. (1997). Quality of life in breast cancer survivors as identified by focus groups. Psychooncology, 6(1), 13–23. doi:10.1002/(SICI)1099-1611(199703)6:1<13:AID-PON231>3.0.CO;2-S.
Crabtree, B. F., & Miller, W. (1992). A template approach to text analysis: Developing and using codebooks. In B. F. Crabtree & W. Miller (Eds.), Doing qualitative research (pp. 93–109). Newbury Park: Sage Publications.
NVivo qualitative data analysis software. (2008). (Version 8 ed.): QSR International Pty Ltd.
Whitford, H. S., Olver, I. N., & Peterson, M. J. (2008). Spirituality as a core domain in the assessment of quality of life in oncology. Psychooncology, 17(11), 1121–1128. doi:10.1002/pon.1322.
Newlin, K., Knafl, K., & Melkus, G. D. (2002). African-American spirituality: A concept analysis. ANS Advances in Nursing Science, 25(2), 57–70.
Mattis, J. S., & Jagers, R. J. (2001). A relational framework for the study of religiosity and spirituality in the lives of African Americans. Journal of Community Psychology, 29(5), 519–539.
Schulz, E., Holt, C. L., Caplan, L., Blake, V., Southward, P., Buckner, A., et al. (2008). Role of spirituality in cancer coping among African Americans: A qualitative examination. Journal of Cancer Survivorship, 2(2), 104–115. doi:10.1007/s11764-008-0050-5.
Gall, T. L., & Cornblat, M. W. (2002). Breast cancer survivors give voice: A qualitative analysis of spiritual factors in long-term adjustment. Psychooncology, 11(6), 524–535. doi:10.1002/pon.613.
Levine, E. G., Yoo, G., Aviv, C., Ewing, C., & Au, A. (2007). Ethnicity and spirituality in breast cancer survivors. Journal of Cancer Survivorship, 1(3), 212–225. doi:10.1007/s11764-007-0024-z.
Hamilton, J. B., Powe, B. D., Pollard, A. B, 3rd, Lee, K. J., & Felton, A. M. (2007). Spirituality among African American cancer survivors: Having a personal relationship with God. Cancer Nursing, 30(4), 309–316. doi:10.1097/01.NCC.0000281730.17985.f5.
Henderson, P. D., Gore, S. V., Davis, B. L., & Condon, E. H. (2003). African American women coping with breast cancer: A qualitative analysis. Oncology Nursing Forum, 30(4), 641–647. doi:10.1188/03.ONF.641-647.
Gregg, G. (2011). I’m a Jesus girl: Coping stories of Black American women diagnosed with breast cancer. Journal of Religion and Health, 50(4), 1040–1053. doi:10.1007/s10943-010-9395-y.
Exline, J. J., Yali, A. M., & Sanderson, W. C. (2000). Guilt, discord, and alienation: The role of religious strain in depression and suicidality. Journal of Clinical Psychology, 56(12), 1481–1496.
Pargament, K. I., Zinnbauer, B. J., Scott, A. B., Butter, E. M., Zerowin, J., & Stanik, P. (1998). Red flags and religious coping: Identifying some religious warning signs among people in crisis. Journal of Clinical Psychology, 54(1), 77–89.
Speice, J., Harkness, J., Laneri, H., Frankel, R., Roter, D., Kornblith, A. B., et al. (2000). Involving family members in cancer care: Focus group considerations of patients and oncological providers. Psychooncology, 9(2), 101–112.
Given, B. A., Given, C. W., & Sherwood, P. R. (2012). Family and caregiver needs over the course of the cancer trajectory. Journal of Supportive Oncology, 10(2), 57–64. doi:10.1016/j.suponc.2011.10.003.
Given, B. A., Sherwood, P., & Given, C. W. (2011). Support for caregivers of cancer patients: Transition after active treatment. Cancer Epidemiology, Biomarkers and Prevention, 20(10), 2015–2021. doi:10.1158/1055-9965.EPI-11-0611.
Nijboer, C., Tempelaar, R., Sanderman, R., Triemstra, M., Spruijt, R. J., & van den Bos, G. A. (1998). Cancer and caregiving: The impact on the caregiver’s health. Psychooncology, 7(1), 3–13. doi:10.1002/(SICI)1099-1611(199801/02)7:1<3:AID-PON320>3.0.CO;2-5.
Kim, Y., Spillers, R. L., & Hall, D. L. (2012). Quality of life of family caregivers 5 years after a relative’s cancer diagnosis: Follow-up of the national quality of life survey for caregivers. Psychooncology, 21(3), 273–281. doi:10.1002/pon.1888.
House, J. S., & Kahn, R. L. (1985). Measures and concepts of social support. In L. S. S. Cohen (Ed.), Social support and health (pp. 83–108). Orlando, FL: Academic Press.
Morgan, P. D., Fogel, J., Rose, L., Barnett, K., Mock, V., Davis, B. L., et al. (2005). African American couples merging strengths to successfully cope with breast cancer. Oncology Nursing Forum, 32(5), 979–987. doi:10.1188/04.ONF.979-987.
Pargament, K. I., Kennell, J., Hathaway, W., Grevengoed, N., Newman, J., & Jones, W. (1988). Religion and the problem-solving process. Three styles of coping. Journal for the Scientific Study of Religion, 27, 90–104.
Pargament, K. I., Koenig, H. G., & Perez, L. M. (2000). The many methods of religious coping: Development and initial validation of the RCOPE. Journal of Clinical Psychology, 56(4), 519–543.
McLaughlin, B., Yoo, W., D’Angelo, J., Tsang, S. Shaw, B. Shah, D., et al. (2013). It is out of my hands: How deferring control to God can decrease quality of life for breast cancer patients. Psycho-Oncology. doi:10.1002/pon.3356.
Thompson, H. S., Littles, M., Jacob, S., & Coker, C. (2006). Posttreatment breast cancer surveillance and follow-up care experiences of breast cancer survivors of African descent: An exploratory qualitative study. Cancer Nursing, 29(6), 478–487.
Ganz, P. A., Kwan, L., Stanton, A. L., Krupnick, J. L., Rowland, J. H., Meyerowitz, B. E., et al. (2004). Quality of life at the end of primary treatment of breast cancer: First results from the moving beyond cancer randomized trial. Journal of the National Cancer Institute, 96(5), 376–387.
Surbone, A., Baider, L., Weitzman, T. S., Brames, M. J., Rittenberg, C. N., Johnson, J., et al. (2010). Psychosocial care for patients and their families is integral to supportive care in cancer: MASCC position statement. Supportive Care in Cancer, 18(2), 255–263. doi:10.1007/s00520-009-0693-4.
Thuné-Boyle, I. C. V., Stygall, J., Keshtgar, M., Davidson, T., & Newman, S. P. (2011). The influence of religious/spiritual resources on finding positive benefits from a breast cancer diagnosis. Counselling & Spirituality, 30, 107–134.
Antoni, M. H., Lehman, J. M., Kilbourn, K. M., Boyers, A. E., Culver, J. L., Alferi, S. M., et al. (2001). Cognitive-behavioral stress management intervention decreases the prevalence of depression and enhances benefit finding among women under treatment for early-stage breast cancer. Health Psychology, 20(1), 20–32.
Kim, Y., Schulz, R., & Carver, C. S. (2007). Benefit-finding in the cancer caregiving experience. Psychosomatic Medicine, 69(3), 283–291. doi:10.1097/PSY.0b013e3180417cf4.
Ferrell, B., Paice, J., & Koczywas, M. (2008). New standards and implications for improving the quality of supportive oncology practice. Journal of Clinical Oncology, 26(23), 3824–3831. doi:10.1200/JCO.2007.15.7552.
Puchalski, C. M. (2012). Spirituality in the cancer trajectory. Annals of Oncology, 23(Suppl 3), 49–55. doi:10.1093/annonc/mds088.
Astrow, A. B., Wexler, A., Texeira, K., He, M. K., & Sulmasy, D. P. (2007). Is failure to meet spiritual needs associated with cancer patients’ perceptions of quality of care and their satisfaction with care? Journal of Clinical Oncology, 25(36), 5753–5757. doi:10.1200/JCO.2007.12.4362.
Acknowledgments
This research was supported by a pilot grant from the Nancy R. Gelman Foundation. Katherine R. Sterba was supported by a Mentored Research Scholar Grant in Applied and Clinical Research, MRSG-12-221-01-CPPB from the American Cancer Society. Jessica L. Burris was supported by Grant T32DA007288 from the National Institute on Drug Abuse. Sue Heiney was partially supported by Grant 5R01CA107305-3 from the National Cancer Institute.
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Sterba, K.R., Burris, J.L., Heiney, S.P. et al. “We both just trusted and leaned on the Lord”: a qualitative study of religiousness and spirituality among African American breast cancer survivors and their caregivers. Qual Life Res 23, 1909–1920 (2014). https://doi.org/10.1007/s11136-014-0654-3
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DOI: https://doi.org/10.1007/s11136-014-0654-3