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Published in: Journal of Cancer Survivorship 1/2011

01-03-2011

Engaging African American breast cancer survivors in an intervention trial: culture, responsiveness and community

Authors: Barbara B. Germino, Merle H. Mishel, G. Rumay Alexander, Coretta Jenerette, Diane Blyler, Carol Baker, Anissa I. Vines, Melissa Green, Debra G. Long

Published in: Journal of Cancer Survivorship | Issue 1/2011

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Abstract

Introduction

Younger breast cancer survivors often lead extremely busy lives with multiple demands and responsibilities, making them difficult to recruit into clinical trials. African American women are even more difficult to recruit because of additional historical and cultural barriers. In a randomized clinical trial of an intervention, we successfully used culturally informed, population-specific recruitment and retention strategies to engage younger African-American breast cancer survivors.

Methods

Caucasian and African American breast cancer survivors were recruited from multiple communities and sites. A variety of planned recruitment and retention strategies addressed cultural and population-specific barriers and were guided by three key principals: increasing familiarity with the study in the communities of interest; increasing the availability and accessibility of study information and study participation; and using cultural brokers.

Results

Accrual of younger African-American breast cancer survivors increased by 373% in 11 months. The steepest rise in the numbers of African-American women recruited came when all strategies were in place and operating simultaneously. Retention rates were 87% for both Caucasian and African American women.

Discusssion/Conclusions

To successfully recruit busy, younger African American cancer survivors, it is important to use a multifaceted approach, addressing cultural and racial/ethnic barriers to research participation; bridging gaps across cultures and communities; including the role of faith and beliefs in considering research participation; recognizing the demands of different life stages and economic situations and the place of research in the larger picture of peoples’ lives. Designs for recruitment and retention need to be broadly conceptualized and specifically applied.

Implications for Cancer Survivors

For busy cancer survivors, willingness to participate in and complete research participation is enhanced by strategies that address barriers but also acknowledge the many demands on their time by making research familiar, available, accessible and credible.
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Literature
1.
go back to reference Mak WW, Law RW, Alvidrez J, Perez-Stable EJ. Gender and ethnic diversity in NIMH-funded clinical trials: review of a decade of published research. Adm Policy Ment Health. 2007;34(6):497–503.CrossRefPubMed Mak WW, Law RW, Alvidrez J, Perez-Stable EJ. Gender and ethnic diversity in NIMH-funded clinical trials: review of a decade of published research. Adm Policy Ment Health. 2007;34(6):497–503.CrossRefPubMed
2.
go back to reference Russell KM, Maraj MS, Wilson LR, Shedd-Steele R, Champion VL. Barriers to recruiting urban African American women into research studies in community settings. Appl Nurs Res. 2008;21(2):90–7.CrossRefPubMed Russell KM, Maraj MS, Wilson LR, Shedd-Steele R, Champion VL. Barriers to recruiting urban African American women into research studies in community settings. Appl Nurs Res. 2008;21(2):90–7.CrossRefPubMed
3.
go back to reference Wilcox S, Shumaker SA, Bowen DJ, Naughton MJ, Rosal MC, Ludlam SE, et al. Promoting adherence and retention to clinical trials in special populations: a women’s health initiative workshop. Control Clin Trials. 2001;22(3):279–89.CrossRefPubMed Wilcox S, Shumaker SA, Bowen DJ, Naughton MJ, Rosal MC, Ludlam SE, et al. Promoting adherence and retention to clinical trials in special populations: a women’s health initiative workshop. Control Clin Trials. 2001;22(3):279–89.CrossRefPubMed
4.
go back to reference Cross TL. Towards a culturally competent system of care: a monograph on effective services for minority children who are severely emotionally disturbed. Washington, DC. Georgetown University Child Development Center, CASSP Technical Assistance Center. 1989. Cross TL. Towards a culturally competent system of care: a monograph on effective services for minority children who are severely emotionally disturbed. Washington, DC. Georgetown University Child Development Center, CASSP Technical Assistance Center. 1989.
5.
go back to reference Israel BA, Schulz AJ, Parker EA, Becker AB. Review of community-based research assessing partnership approaches to improve public health. Annu Rev Public Health. 1998;19:173–202.CrossRefPubMed Israel BA, Schulz AJ, Parker EA, Becker AB. Review of community-based research assessing partnership approaches to improve public health. Annu Rev Public Health. 1998;19:173–202.CrossRefPubMed
6.
go back to reference Horowitz CR, Arniella A, James S, Bickell NA. Using community-based participatory research to reduce health disparities in East and Central Harlem. Mt Sinai J Med. 2004;71(6):368–74.PubMed Horowitz CR, Arniella A, James S, Bickell NA. Using community-based participatory research to reduce health disparities in East and Central Harlem. Mt Sinai J Med. 2004;71(6):368–74.PubMed
7.
go back to reference Chandra A, Paul III DP. African American participation in clinical trials: recruitment difficulties and potential remedies. Hosp Top. 2003;81(2):33–8.CrossRef Chandra A, Paul III DP. African American participation in clinical trials: recruitment difficulties and potential remedies. Hosp Top. 2003;81(2):33–8.CrossRef
8.
go back to reference Coatsworth J, Duncan L, Pantin H, Szapocznik J. Patterns of retention in a preventive intervention with ethnic minority families. J Prim Prev. 2006;27(2):171–93.CrossRefPubMed Coatsworth J, Duncan L, Pantin H, Szapocznik J. Patterns of retention in a preventive intervention with ethnic minority families. J Prim Prev. 2006;27(2):171–93.CrossRefPubMed
9.
go back to reference Dilworth-Anderson P, Burton LM. Rethinking family development. J Soc Pers Relatsh. 1996;13(3):325–34.CrossRef Dilworth-Anderson P, Burton LM. Rethinking family development. J Soc Pers Relatsh. 1996;13(3):325–34.CrossRef
10.
go back to reference Hamilton JB, Sandelowski M. Living the golden rule: reciprocal exchanges among African Americans with cancer. Qual Health Res. 2003;13(5):656–74.CrossRefPubMed Hamilton JB, Sandelowski M. Living the golden rule: reciprocal exchanges among African Americans with cancer. Qual Health Res. 2003;13(5):656–74.CrossRefPubMed
11.
go back to reference McAdoo HP. Upward mobility and parenting in middle-income Black families. In: Burlew AKMH, Banks WC, McAdoo HP, ya Azibo DA, editors. African American psychology: theory, research and practice. Newbury Park: Sage; 1992. p. 63–86. McAdoo HP. Upward mobility and parenting in middle-income Black families. In: Burlew AKMH, Banks WC, McAdoo HP, ya Azibo DA, editors. African American psychology: theory, research and practice. Newbury Park: Sage; 1992. p. 63–86.
12.
go back to reference Sue DW, Capodilup CM, Torino GC, Bucceri JM, Holder AMB, Nadal KL, et al. Racial microaggressions in everyday life. Am Psychol. 2007;62(4):271–86.CrossRefPubMed Sue DW, Capodilup CM, Torino GC, Bucceri JM, Holder AMB, Nadal KL, et al. Racial microaggressions in everyday life. Am Psychol. 2007;62(4):271–86.CrossRefPubMed
13.
go back to reference Dilworth-Anderson P, Thaker S, Burke JMD. Recruitment strategies for studying dementia in later life among diverse cultural groups. Alzheimer Dis Assoc Disord. 2005;19(4):256–60.CrossRefPubMed Dilworth-Anderson P, Thaker S, Burke JMD. Recruitment strategies for studying dementia in later life among diverse cultural groups. Alzheimer Dis Assoc Disord. 2005;19(4):256–60.CrossRefPubMed
14.
go back to reference Powe BD. Cancer fatalism among African-Americans: a review of the literature. Nurs Outlook. 1996;44(1):18–20.CrossRefPubMed Powe BD. Cancer fatalism among African-Americans: a review of the literature. Nurs Outlook. 1996;44(1):18–20.CrossRefPubMed
15.
go back to reference Powe BD, Hamilton J, Brooks P. Perceptions of cancer fatalism and cancer knowledge—a comparison of older and younger African American women. J Psychosoc Oncol. 2006;24(4):1–13.CrossRefPubMed Powe BD, Hamilton J, Brooks P. Perceptions of cancer fatalism and cancer knowledge—a comparison of older and younger African American women. J Psychosoc Oncol. 2006;24(4):1–13.CrossRefPubMed
16.
go back to reference Holt CL, Lukwago SN, Kreuter MW. Spirituality, breast cancer beliefs and mammography utilization among urban African American women. J Health Psychol. 2003;8(3):383–96.CrossRefPubMed Holt CL, Lukwago SN, Kreuter MW. Spirituality, breast cancer beliefs and mammography utilization among urban African American women. J Health Psychol. 2003;8(3):383–96.CrossRefPubMed
17.
go back to reference Grange CM, Matsuyama RK, Ingram KM, Lyckholm LJ, Smith TJ. Identifying supportive and unsupportive responses of others: perspectives of African American and Caucasian cancer patients. J Psychosoc Oncol. 2008;26(1):81–99.CrossRefPubMed Grange CM, Matsuyama RK, Ingram KM, Lyckholm LJ, Smith TJ. Identifying supportive and unsupportive responses of others: perspectives of African American and Caucasian cancer patients. J Psychosoc Oncol. 2008;26(1):81–99.CrossRefPubMed
18.
go back to reference Strayhorn G. Faith-based initiatives. In: Satcher D, Pamies RJ, editors. Multicultural medicine and health disparities. New York: McGraw-Hill Companies; 2006. p. 495–507. Strayhorn G. Faith-based initiatives. In: Satcher D, Pamies RJ, editors. Multicultural medicine and health disparities. New York: McGraw-Hill Companies; 2006. p. 495–507.
19.
go back to reference Corbie-Smith G, Thomas SB, St. George DMM. Distrust, race, and research. Arch Intern Med. 2002;62(21):2458–63.CrossRef Corbie-Smith G, Thomas SB, St. George DMM. Distrust, race, and research. Arch Intern Med. 2002;62(21):2458–63.CrossRef
20.
go back to reference Dula A. African American suspicion of the healthcare system is justified: what do we do about it? Camb Q Healthc Ethics. 1994;3(3):347–57.CrossRefPubMed Dula A. African American suspicion of the healthcare system is justified: what do we do about it? Camb Q Healthc Ethics. 1994;3(3):347–57.CrossRefPubMed
21.
go back to reference Earl CE, Penney PJ. The significance of trust in the research consent process with African Americans. West J Nurs Res. 2001;23(7):753–62.CrossRefPubMed Earl CE, Penney PJ. The significance of trust in the research consent process with African Americans. West J Nurs Res. 2001;23(7):753–62.CrossRefPubMed
22.
go back to reference Freimuth VS, Quinn SC, Thomas SB, Cole G, Zook E, Duncan T. African Americans’ views on research and the Tuskegee syphilis study. Soc Sci Med. 2001;52(5):797–808.CrossRefPubMed Freimuth VS, Quinn SC, Thomas SB, Cole G, Zook E, Duncan T. African Americans’ views on research and the Tuskegee syphilis study. Soc Sci Med. 2001;52(5):797–808.CrossRefPubMed
23.
go back to reference Shavers VL, Lynch CF, Burmeister LF. Racial differences in factors that influence the willingness to participate in medical research studies. Ann Epidemiol. 2002;12(4):248–56.CrossRefPubMed Shavers VL, Lynch CF, Burmeister LF. Racial differences in factors that influence the willingness to participate in medical research studies. Ann Epidemiol. 2002;12(4):248–56.CrossRefPubMed
24.
go back to reference Epstein S. The rise of ‘recruitmentology’: clinical research, racial knowledge, and the politics of inclusion and difference. Soc Stud Sci. 2008;38(5):801–32.CrossRefPubMed Epstein S. The rise of ‘recruitmentology’: clinical research, racial knowledge, and the politics of inclusion and difference. Soc Stud Sci. 2008;38(5):801–32.CrossRefPubMed
25.
go back to reference Stark N, Paskett E, Bell R, Cooper MR, Walker E, Wilson A, et al. Increasing participation of minorities in cancer clinical trials: summary of the “moving beyond the barriers” conference in North Carolina. J Natl Med Assoc. 2002;94(1):31–9.PubMed Stark N, Paskett E, Bell R, Cooper MR, Walker E, Wilson A, et al. Increasing participation of minorities in cancer clinical trials: summary of the “moving beyond the barriers” conference in North Carolina. J Natl Med Assoc. 2002;94(1):31–9.PubMed
26.
go back to reference National Center for Cultural Competence. Bridging the cultural divide in health care settings: the essential role of cultural broker programs. Guide developed for the National Health Service Corps, Bureau of Health Professions, Health Resources and Services Administration, U.S. Dept. of Health and Human Services. 2004; 1–14. National Center for Cultural Competence. Bridging the cultural divide in health care settings: the essential role of cultural broker programs. Guide developed for the National Health Service Corps, Bureau of Health Professions, Health Resources and Services Administration, U.S. Dept. of Health and Human Services. 2004; 1–14.
27.
go back to reference Ford JG, Howerton MW, Lai GY, Gary TL, Bolen S, Gibbons MC, et al. Barriers to recruiting underrepresented populations to cancer clinical trials: a systematic review. Cancer 2008;112(2):228–42.CrossRefPubMed Ford JG, Howerton MW, Lai GY, Gary TL, Bolen S, Gibbons MC, et al. Barriers to recruiting underrepresented populations to cancer clinical trials: a systematic review. Cancer 2008;112(2):228–42.CrossRefPubMed
28.
go back to reference Dancy BL, Wilbur JE, TAAshek M, Bonner G, Barnes-Boyd C. Community-based research: barriers to recruitment of African Americans. Nurs Outlook. 2004;52(5):234–40.CrossRefPubMed Dancy BL, Wilbur JE, TAAshek M, Bonner G, Barnes-Boyd C. Community-based research: barriers to recruitment of African Americans. Nurs Outlook. 2004;52(5):234–40.CrossRefPubMed
29.
go back to reference Staffileno BA, Coke LA. Recruiting and retaining young, sedentary, hypertension-prone African American women in a physical activity intervention study. J Cardiovasc Nurs. 2006;21(3):208–16.PubMed Staffileno BA, Coke LA. Recruiting and retaining young, sedentary, hypertension-prone African American women in a physical activity intervention study. J Cardiovasc Nurs. 2006;21(3):208–16.PubMed
30.
go back to reference Janson SL, Alioto ME, Boushey HA. Attrition and retention of ethnically diverse participants in a multicenter randomized controlled research trial. Control Clin Trials. 2001;22(6 Suppl):236S–43S.CrossRefPubMed Janson SL, Alioto ME, Boushey HA. Attrition and retention of ethnically diverse participants in a multicenter randomized controlled research trial. Control Clin Trials. 2001;22(6 Suppl):236S–43S.CrossRefPubMed
31.
go back to reference Robinson JM, Trochim WM. An examination of community members’, researchers’ and health professionals’ perceptions of barriers to minority participation in medical research: an application of concept mapping. Ethn Health. 2007;12(5):521–39.CrossRefPubMed Robinson JM, Trochim WM. An examination of community members’, researchers’ and health professionals’ perceptions of barriers to minority participation in medical research: an application of concept mapping. Ethn Health. 2007;12(5):521–39.CrossRefPubMed
32.
go back to reference Halbert GH, Kumanyika S, Bowman M, Bellamy SL, Briggs V, Brown S, et al. Participation rates and representativeness of African Americans recruited to a health promotion program. Health Educ Res. 2010;25(1):6–13.CrossRefPubMed Halbert GH, Kumanyika S, Bowman M, Bellamy SL, Briggs V, Brown S, et al. Participation rates and representativeness of African Americans recruited to a health promotion program. Health Educ Res. 2010;25(1):6–13.CrossRefPubMed
Metadata
Title
Engaging African American breast cancer survivors in an intervention trial: culture, responsiveness and community
Authors
Barbara B. Germino
Merle H. Mishel
G. Rumay Alexander
Coretta Jenerette
Diane Blyler
Carol Baker
Anissa I. Vines
Melissa Green
Debra G. Long
Publication date
01-03-2011
Publisher
Springer US
Published in
Journal of Cancer Survivorship / Issue 1/2011
Print ISSN: 1932-2259
Electronic ISSN: 1932-2267
DOI
https://doi.org/10.1007/s11764-010-0150-x

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