Skip to main content
Top
Published in: Journal of Cancer Education 2/2012

01-06-2012

The Role of Health Literacy on African American and Hispanic/Latino Perspectives on Cancer Clinical Trials

Authors: Kiameesha R. Evans, M. Jane Lewis, Shawna V. Hudson

Published in: Journal of Cancer Education | Issue 2/2012

Login to get access

Abstract

Although cancer clinical trials are important for discovering lifesaving therapies, participation remains low among racial/ethnic minorities, and little research explores the role of health literacy in racial/ethnic minority perceptions of cancer clinical trials (CCTs). Five focus groups (n = 50) with African American and Hispanic participants explored CCT perceptions using a multidimensional health literacy framework. We found poor scientific literacy including misconceptions of scientific information, perceptions of clinical trials as uncertain and fear; limited civic literacy around topics of trust, perceptions of participants as guinea pigs, and concerns about of IRB protections; and cultural literacy challenges regarding the importance of home remedies for health, use of native language, and the importance of race/ethnicity matching to health care professionals. Results highlight the importance of attending to scientific literacy, cultural literacy, and civic literacy. Future educational interventions regarding cancer clinical trials should address the importance of health literacy in understanding cancer clinical trial decision making.
Literature
1.
go back to reference Siegel R, Ward E, Brawley O, Jemal A (2011) Cancer statistics, 2011: the impact of eliminating socioeconomic and racial disparities on premature cancer deaths. CA Cancer J Clin 61(4):212–236PubMedCrossRef Siegel R, Ward E, Brawley O, Jemal A (2011) Cancer statistics, 2011: the impact of eliminating socioeconomic and racial disparities on premature cancer deaths. CA Cancer J Clin 61(4):212–236PubMedCrossRef
4.
go back to reference Ford LG, Minasian LM, McCaskill-Stevens W, Pisano ED, Sullivan D, Smith RA (2003) Prevention and early detection clinical trials: opportunities for primary care providers and their patients. CA Cancer J Clin 53:82–101PubMedCrossRef Ford LG, Minasian LM, McCaskill-Stevens W, Pisano ED, Sullivan D, Smith RA (2003) Prevention and early detection clinical trials: opportunities for primary care providers and their patients. CA Cancer J Clin 53:82–101PubMedCrossRef
6.
go back to reference National Cancer Institute (2002) Cancer clinical trials: the basic workbook. National Cancer Institute, Bethesda, MD National Cancer Institute (2002) Cancer clinical trials: the basic workbook. National Cancer Institute, Bethesda, MD
7.
go back to reference Newman LA, Kim Roff N, Weinberg AD (2008) Cancer clinical trials accrual: missed opportunities to address disparities and missed opportunities to improve outcomes for all. Ann Surg Oncol 15(7):1818–1819PubMedCrossRef Newman LA, Kim Roff N, Weinberg AD (2008) Cancer clinical trials accrual: missed opportunities to address disparities and missed opportunities to improve outcomes for all. Ann Surg Oncol 15(7):1818–1819PubMedCrossRef
8.
go back to reference Murthy VH, Krumholz HM, Gross CP (2004) Participation in cancer clinical trials: race-, sex-, and age-based disparities. JAMA 291:2720–2726PubMedCrossRef Murthy VH, Krumholz HM, Gross CP (2004) Participation in cancer clinical trials: race-, sex-, and age-based disparities. JAMA 291:2720–2726PubMedCrossRef
10.
go back to reference Sadler GR, Gonzalez J, Mumman M, Cullen L, LaHousse SF, Malcarne V, Conde V, Riley N (2010) Adapting a program to inform African American and Hispanic women about cancer clinical trials. J Canc Educ 25:142–145CrossRef Sadler GR, Gonzalez J, Mumman M, Cullen L, LaHousse SF, Malcarne V, Conde V, Riley N (2010) Adapting a program to inform African American and Hispanic women about cancer clinical trials. J Canc Educ 25:142–145CrossRef
11.
go back to reference Bieniasz ME, Underwood D, Bailey J, Ruffin MT (2003) Women’s feedback on chemopreventive trial for cervical dysplasia. App Nurs Res 16(1):22–28CrossRef Bieniasz ME, Underwood D, Bailey J, Ruffin MT (2003) Women’s feedback on chemopreventive trial for cervical dysplasia. App Nurs Res 16(1):22–28CrossRef
12.
go back to reference Corbie-Smith G, Thomas SB, Williams MV, Moody-Ayers S (1999) Attitudes and beliefs of African Americans toward participation in medical research. J Gen Intern Med 14:537–546PubMedCrossRef Corbie-Smith G, Thomas SB, Williams MV, Moody-Ayers S (1999) Attitudes and beliefs of African Americans toward participation in medical research. J Gen Intern Med 14:537–546PubMedCrossRef
13.
go back to reference Jones JM, Nyhof-Young J, Moric J, Friedman A, Wells W, Catton P (2006) Identifying motivations and barriers to patient participation in clinical trials. J Canc Educ 21:237–242CrossRef Jones JM, Nyhof-Young J, Moric J, Friedman A, Wells W, Catton P (2006) Identifying motivations and barriers to patient participation in clinical trials. J Canc Educ 21:237–242CrossRef
14.
go back to reference Wright JR, Whelan TJ, Schiff C, Dubois S, Crooks D, Haines PT, DeRosa D, Roberts RS, Gafni A, Pritchard K, Levine MN (2004) Why cancer patients enter randomized clinical trials: exploring the factors that influence their decision. J Clin Oncol 22:4312–4318PubMedCrossRef Wright JR, Whelan TJ, Schiff C, Dubois S, Crooks D, Haines PT, DeRosa D, Roberts RS, Gafni A, Pritchard K, Levine MN (2004) Why cancer patients enter randomized clinical trials: exploring the factors that influence their decision. J Clin Oncol 22:4312–4318PubMedCrossRef
15.
go back to reference Nielsen-Bohlman L, Institute of Medicine (U.S.) Committee on Health Literacy (2004) Health literacy: a prescription to end confusion. National Academies Press, Washington, DC Nielsen-Bohlman L, Institute of Medicine (U.S.) Committee on Health Literacy (2004) Health literacy: a prescription to end confusion. National Academies Press, Washington, DC
16.
go back to reference Zarcadoolas C, Pleasant A, Greer DS (2005) Understanding health literacy: an expanded model. Health Promot Int 20(2):195–203PubMedCrossRef Zarcadoolas C, Pleasant A, Greer DS (2005) Understanding health literacy: an expanded model. Health Promot Int 20(2):195–203PubMedCrossRef
17.
19.
go back to reference Gansler T, Henley SJ, Stein K, Nehl EJ, Smigal C, Slaughter E (2005) Sociodemographic determinants of cancer treatment health literacy. Cancer 104:653–660PubMedCrossRef Gansler T, Henley SJ, Stein K, Nehl EJ, Smigal C, Slaughter E (2005) Sociodemographic determinants of cancer treatment health literacy. Cancer 104:653–660PubMedCrossRef
20.
go back to reference Zarcadoolas C, Greer DS, Pleasant A (2006) Advancing health literacy: a framework for understanding and action. Wiley, San Francisco, CA Zarcadoolas C, Greer DS, Pleasant A (2006) Advancing health literacy: a framework for understanding and action. Wiley, San Francisco, CA
21.
go back to reference Krieger JL, Parrott RL, Nussbaum JF (2011) Metaphor use and health literacy: a pilot study of strategies to explain randomization in cancer clinical trials. J Health Commun 16(1):3–16PubMedCrossRef Krieger JL, Parrott RL, Nussbaum JF (2011) Metaphor use and health literacy: a pilot study of strategies to explain randomization in cancer clinical trials. J Health Commun 16(1):3–16PubMedCrossRef
22.
go back to reference Paskett ED, Katz ML, Degraffinreid CR, Tatum CM (2009) Participation in cancer clinical trials. In: Miller SM (ed) Handbook of cancer control and behavioral science: a resource for researchers, practitioners, and policy makers. American Psychological Association, Washington, DC, pp 103–112 Paskett ED, Katz ML, Degraffinreid CR, Tatum CM (2009) Participation in cancer clinical trials. In: Miller SM (ed) Handbook of cancer control and behavioral science: a resource for researchers, practitioners, and policy makers. American Psychological Association, Washington, DC, pp 103–112
23.
go back to reference Shaw SJ, Huebner C, Armin J, Orzech K, Vivian J (2009) The role of culture in health literacy and chronic disease screening and management. J Immigr Minor Health 11(6):460–467PubMedCrossRef Shaw SJ, Huebner C, Armin J, Orzech K, Vivian J (2009) The role of culture in health literacy and chronic disease screening and management. J Immigr Minor Health 11(6):460–467PubMedCrossRef
24.
go back to reference Berkman ND, Davis TC, McCormack L (2010) Health literacy: what is it? J Health Commun 15(Suppl):9–19PubMedCrossRef Berkman ND, Davis TC, McCormack L (2010) Health literacy: what is it? J Health Commun 15(Suppl):9–19PubMedCrossRef
25.
go back to reference Scientific Software Development (2006) ATLAS.ti. version 5.2. Scientific Software Development, Berlin Scientific Software Development (2006) ATLAS.ti. version 5.2. Scientific Software Development, Berlin
26.
go back to reference Crabtree BF, Miller WL (1999) Doing qualitative research, 2nd edn. Sage Publications, Thousand Oaks Crabtree BF, Miller WL (1999) Doing qualitative research, 2nd edn. Sage Publications, Thousand Oaks
Metadata
Title
The Role of Health Literacy on African American and Hispanic/Latino Perspectives on Cancer Clinical Trials
Authors
Kiameesha R. Evans
M. Jane Lewis
Shawna V. Hudson
Publication date
01-06-2012
Publisher
Springer-Verlag
Published in
Journal of Cancer Education / Issue 2/2012
Print ISSN: 0885-8195
Electronic ISSN: 1543-0154
DOI
https://doi.org/10.1007/s13187-011-0300-5

Other articles of this Issue 2/2012

Journal of Cancer Education 2/2012 Go to the issue
Webinar | 19-02-2024 | 17:30 (CET)

Keynote webinar | Spotlight on antibody–drug conjugates in cancer

Antibody–drug conjugates (ADCs) are novel agents that have shown promise across multiple tumor types. Explore the current landscape of ADCs in breast and lung cancer with our experts, and gain insights into the mechanism of action, key clinical trials data, existing challenges, and future directions.

Dr. Véronique Diéras
Prof. Fabrice Barlesi
Developed by: Springer Medicine