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Communicating Across Diverse and Differently Literate Audiences

Abstract

Oncologists and fertility specialists are often challenged when communicating to patients the complex information about cancer, risks of cancer treatment to reproduction, and the processes of fertility preservation (FP), including the probabilities for successful later conception. This has added to the already unfair burden of cancer upon certain populations of women who may have limited backgrounds or levels of literacy. A small but growing number of professionals and organizations are steadily improving access to fertility preservation information for such women. The following discussion outlines the communication barriers and presents strategies for clinicians to improve the dissemination of fertility preservation information to patients.

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References

  1. Saha S, Fernandez A, Perez-Stable E. Reducing language barriers and racial/ethnic disparities in health care: an investment in our future. J Gen Intern Med. 2007;22 Suppl 2:371–2.

    Article  PubMed  Google Scholar 

  2. Shin HB, Kominski RA. Language use in the united states: 2007: U.S. Department of Commerce, U.S. Census Bureau; April 2010.

    Google Scholar 

  3. United States Census Bureau. U.S. Census Bureau: state and County QuickFacts. 2012. http://quickfacts.census.gov/qfd/states/00000.html

  4. Cheng EM, Chen A, Cunningham W. Primary language and receipt of recommended health care among Hispanics in the United States. J Gen Intern Med. 2007;22 Suppl 2:283–8.

    Article  PubMed  Google Scholar 

  5. Dohan D, Levintova M. Barriers beyond words: cancer, culture, and translation in a community of russian speakers. J Gen Intern Med. 2007;22:300–5.

    Article  PubMed  Google Scholar 

  6. Quinn GP, Jimenez J, Meade CD, et al. Enhancing oncology health care provider’s sensitivity to cultural communication to reduce cancer disparities: a pilot study. J Cancer Educ. 2011;26(2):322–5.

    Article  PubMed  Google Scholar 

  7. Nielsen-Bohlman LPA, Kindig D. Health literacy: a prescription to end confusion. Washington, DC: National Academy of Science; 2004.

    Google Scholar 

  8. OECD and Statistics Canada. Literacy in the information age: final report of the International Adult Literacy Survey. Paris and Ottowa; 2000.

    Google Scholar 

  9. Kutner M, Greenberg E, Baer J, National Assessment of Adult LIteracy (NAAL). A first look at the literacy of America’s adults in the 21st century. Washington, DC: US Department of Education, Institute of Education Sciences; 2005.

    Google Scholar 

  10. Doak LG, Doak CC, Meade CD. Strategies to improve cancer education materials. Oncol Nurs Forum. 1996;23(8):1305–12.

    PubMed  CAS  Google Scholar 

  11. Bennett CL, Ferreira MR, Davis TC, et al. Relation between literacy, race, and stage of presentation among low-income patients with prostate cancer. J Clin Oncol. 1998;16(9):3101–4.

    PubMed  CAS  Google Scholar 

  12. http://www.pewinternet.org/Static-Pages/Data-Tools/Get-the-Latest-Statistics.aspx. Accessed Dec 2012.

  13. Hesse BW, Nelson DE, Kreps GL, et al. Trust and sources of health information: the impact of the internet and its implications for health care providers: findings from the first health information national trends survey. Arch Intern Med. 2005;165(22):2618–24.

    Article  PubMed  Google Scholar 

  14. Campbell MK, Honess-Morreale L, Farrell D, Carbone E, Brasure M. A tailored multimedia nutrition education pilot program for low-income women receiving food assistance. Health Educ Res. 1999;14(2):257–67.

    Article  PubMed  CAS  Google Scholar 

  15. Neuhauser L, Kreps GL. Online cancer communication: meeting the literacy, cultural and linguistic needs of diverse audiences. Patient Educ Couns. 2008;71(3):365–77.

    Article  PubMed  Google Scholar 

  16. Wilson FL, Baker LM, Brown-Syed C, Gollop C. An analysis of the readability and cultural sensitivity of information on the national cancer Institute’s Web site: CancerNet. Oncol Nurs Forum. 2000;27(9):1403–9.

    PubMed  CAS  Google Scholar 

  17. Berland GK, Elliott MN, Morales LS, et al. Health information on the Internet: accessibility, quality, and readability in English and Spanish. JAMA. 2001;285(20):2612–21.

    Article  PubMed  CAS  Google Scholar 

  18. Manganello JA, Clayman ML. The association of understanding of medical statistics with health information seeking and health provider interaction in a national sample of young adults. J Health Commun. 2011;16 Suppl 3:163–76.

    Article  PubMed  Google Scholar 

  19. Institute of Medicine. The unequal burden of cancer: an assessment of NIH research and programs for the ethnic minorities and the medically underserved. Washington, DC: National Academies Press; 1999.

    Google Scholar 

  20. Rutten LF, Beckjord EB, Hess BW, Croyle RT. Cancer communication: Health Information National Trends Survey. Washington, DC: National Cancer Institute. NIH Pub. No. 07-6214.

    Google Scholar 

  21. Schulmeister L, Lifsey DS. Cervical cancer screening knowledge, behaviors, and beliefs of Vietnamese women. Oncol Nurs Forum. 1999;26(5):879–87.

    PubMed  CAS  Google Scholar 

  22. Kent EE, Arora NK, Rowland JH, et al. Health information needs and health-related quality of life in a diverse population of long-term cancer survivors. Patient Educ Couns. 2012;89(2):345–52.

    Article  PubMed  Google Scholar 

  23. Partridge AH, Gelber S, Peppercorn J, et al. Web-based survey of fertility issues in young women with breast cancer. J Clin Oncol. 2004;22(20):4174–83.

    Article  PubMed  Google Scholar 

  24. Gorman JR, Bailey S, Pierce JP, Su HI. How do you feel about fertility and parenthood? The voices of young female cancer survivors. J Cancer Surviv. 2012;6(2):200–9.

    Article  PubMed  Google Scholar 

  25. Thewes B, Meiser B, Taylor A, et al. Fertility- and menopause-related information needs of younger women with a diagnosis of early breast cancer. J Clin Oncol. 2005;23(22):5155–65.

    Article  PubMed  CAS  Google Scholar 

  26. Letourneau JM, Smith JF, Ebbel EE, et al. Racial, socioeconomic, and demographic disparities in access to fertility preservation in young women diagnosed with cancer. Cancer. 2012;118(18):4579–88.

    Article  PubMed  Google Scholar 

  27. Hammond CT, Beckjord EB, Arora NK, Bellizzi KM, Jeffery DD, Aziz NM. Non-Hodgkin’s lymphoma survivors’ fertility and sexual function-related information needs. Fertil Steril. 2008;90(4):1256–8.

    Article  PubMed  Google Scholar 

  28. Goodman LR, Balthazar U, Kim J, Mersereau JE. Trends of socioeconomic disparities in referral patterns for fertility preservation consultation. Hum Reprod. 2012;27(7):2076–81.

    Article  PubMed  Google Scholar 

  29. Richardson LD, Norris M. Access to health and health care: how race and ethnicity matter. Mt Sinai J Med. 2010;77(2):166–77.

    Article  PubMed  Google Scholar 

  30. Fedewa SA, Lerro C, Chase D, Ward EM. Insurance status and racial differences in uterine cancer survival: a study of patients in the National Cancer Database. Gynecol Oncol. 2011;122(1):63–8.

    Article  PubMed  CAS  Google Scholar 

  31. Matthews ML, Hurst BS, Marshburn PB, Usadi RS, Papadakis MA, Sarantou T. Cancer, fertility preservation, and future pregnancy: a comprehensive review. Obstet Gynecol Int. 2012;2012:953937.

    PubMed  Google Scholar 

  32. Niemasik EE, Letourneau J, Dohan D, et al. Patient perceptions of reproductive health counseling at the time of cancer diagnosis: a qualitative study of female California cancer survivors. J Cancer Surviv. 2012;6(3):324–32.

    Article  PubMed  Google Scholar 

  33. Schover LR, Rybicki LA, Martin BA, Bringelsen KA. Having children after cancer. A pilot survey of survivors’ attitudes and experiences. Cancer. 1999;86(4):697–709.

    Article  PubMed  CAS  Google Scholar 

  34. Forman EJ, Anders CK, Behera MA. A nationwide survey of oncologists regarding treatment-related infertility and fertility preservation in female cancer patients. Fertil Steril. 2010;94(5):1652–6.

    Article  PubMed  Google Scholar 

  35. Duffy CM, Allen SM, Clark MA. Discussions regarding reproductive health for young women with breast cancer undergoing chemotherapy. J Clin Oncol. 2005;23(4):766–73.

    Article  PubMed  Google Scholar 

  36. Balthazar U, Fritz MA, Mersereau JE. Fertility preservation: a pilot study to assess previsit patient knowledge quantitatively. Fertil Steril. 2011;95(6):1913–6.

    Article  PubMed  Google Scholar 

  37. Peate M, Meiser B, Friedlander M, et al. It’s now or never: fertility-related knowledge, decision-making preferences, and treatment intentions in young women with breast cancer—an Australian fertility decision aid collaborative group study. J Clin Oncol. 2011;29(13):1670–7.

    Article  PubMed  Google Scholar 

  38. Balthazar U, Deal AM, Fritz MA, Kondapalli LA, Kim JY, Mersereau JE. The current fertility preservation consultation model: are we adequately informing cancer patients of their options? Hum Reprod. 2012;27(8):2413–9.

    Article  PubMed  Google Scholar 

  39. Lee SJ, Schover LR, Partridge AH, et al. American society of clinical oncology recommendations on fertility preservation in cancer patients. J Clin Oncol. 2006;24:2917–31.

    Article  PubMed  Google Scholar 

  40. Quinn GP, Vadaparampil ST, Bell-Ellison BA, Gwede CK, Albrecht TL. Patient-physician communication barriers regarding fertility preservation among newly diagnosed cancer patients. Soc Sci Med. 2008;66(3):784–9.

    Article  PubMed  Google Scholar 

  41. Meneses K, McNees P, Azuero A, Jukkala A. Development of the fertility and cancer project: an internet approach to help young cancer survivors. Oncol Nurs Forum. 2010;37(2):191–7.

    Article  PubMed  Google Scholar 

  42. Peddie VL, van Teijlingen E, Bhattacharya S. A qualitative study of women’s decision-making at the end of IVF treatment. Hum Reprod. 2005;20(7):1944–51.

    Article  PubMed  CAS  Google Scholar 

  43. Peddie V, Porter M, Barbour R, et al. Factors affecting decision making about fertility preservation after cancer diagnosis: a qualitative study. BJOG. 2012;119(9):1049–57.

    Article  PubMed  CAS  Google Scholar 

  44. https://www.census.gov/hhes/socdemo/language/data/acs/index.html. Accessed Dec 2012.

  45. Navon L. Cultural views of cancer around the world. Cancer Nurs. 1999;22(1):39–45.

    Article  PubMed  CAS  Google Scholar 

  46. Wenchi L, Wang JH, Chen MY, et al. Developing and validating a measure of chinese cultural views of health and cancer. Health Educ Behav. 2008;35(3):361–75.

    Article  Google Scholar 

  47. Schover LR, Rhodes MM, Baum G, et al. Sisters Peer Counseling in Reproductive Issues After Treatment (SPIRIT): a peer counseling program to improve reproductive health among African American breast cancer survivors. Cancer. 2011;117(21):4983–92.

    Article  PubMed  Google Scholar 

  48. Stone D, Patton B, Heen S. Difficult conversations. New York, NY: Penguin; 1999.

    Google Scholar 

  49. Meystre C, Bourquin C, Despland JN, Stiefel F, de Roten Y. Working alliance in communication skills training for oncology clinicians: a controlled trial. Patient Educ Couns. 2013;90(2):233–8.

    Article  PubMed  Google Scholar 

  50. McInnes DK, Cleary PD, Stein KD, Ding L, Mehta CC, Ayanian JZ. Perceptions of cancer-related information among cancer survivors: a report from the American cancer Society’s studies of cancer survivors. Cancer. 2008;113(6):1471–9.

    Article  PubMed  Google Scholar 

  51. Mast MS. On the importance of nonverbal communication in the physician-patient interaction. Patient Educ Couns. 2007;67(3):315–8.

    Article  PubMed  Google Scholar 

  52. Schouten BC, Meeuwesen L. Cultural differences in medical communication: a review of the literature. Patient Educ Couns. 2006;64(1–3):21–34.

    Article  PubMed  Google Scholar 

  53. Quinn GP, Vadaparampil ST, King L, et al. Impact of physicians’ personal discomfort and patient prognosis on discussion of fertility preservation with young cancer patients. Patient Educ Couns. 2009;77(3):338–43.

    Article  PubMed  Google Scholar 

  54. Lee S, Heytens E, Moy F, Ozkavukcu S, Oktay K. Determinants of access to fertility preservation in women with breast cancer. Fertil Steril. 2011;95(6):1932–6.

    Article  PubMed  Google Scholar 

  55. Symonds RP, Lord K, Mitchell AJ, Raghavan D. Recruitment of ethnic minorities into cancer clinical trials: experience from the front lines. Br J Cancer. 2012;107(7):1017–21.

    Article  PubMed  CAS  Google Scholar 

  56. El-Khorazaty MN, Johnson AA, Kiely M, et al. Recruitment and retention of low-income minority women in a behavioral intervention to reduce smoking, depression, and intimate partner violence during pregnancy. BMC Public Health. 2007;7:233.

    Article  PubMed  Google Scholar 

  57. Ko L, Reuland D, Jolles M, Clay R, Pignone M. Cultural and linguistic adaptation of a multimedia colorectal cancer screening decision aid for Spanish speaking latinos. J Health Commun. (in press).

    Google Scholar 

  58. Reuland DS, Ko LK, Fernandez A, Braswell LC, Pignone M. Testing a Spanish-language colorectal cancer screening decision aid in Latinos with limited English proficiency: results from a pre-post trial and four month follow-up survey. BMC Med Inform Decis Mak. 2012;12:53.

    Article  PubMed  Google Scholar 

  59. Quinn GP, Hauser K, Bell-Ellison BA, Rodriguez NY, Frias JL. Promoting pre-conceptional use of folic acid to Hispanic women: a social marketing approach. Matern Child Health J. 2006;10(5):403–12.

    Article  PubMed  Google Scholar 

  60. Sawyer L, Regev H, Proctor S, et al. Matching versus cultural competence in research: methodological considerations. Res Nurs Health. 1995;18(6):557–67.

    Article  PubMed  CAS  Google Scholar 

  61. Simmons VN, Cruz LM, Brandon TH, Quinn GP. Translation and adaptation of smoking relapse-prevention materials for pregnant and postpartum Hispanic women. J Health Commun. 2011;16(1):90–107.

    Article  PubMed  Google Scholar 

  62. Mackert M, Kahlor L, Tyler D, Gustafson J. Designing e-health interventions for low-health-literate culturally diverse parents: addressing the obesity epidemic. Telemed J E Health. 2009;15(7):672–7.

    Article  PubMed  Google Scholar 

  63. http://usability.gov/about/index.html. Accessed March 2013.

  64. Guidry JJ, Torrence W, Herbelin S. Closing the divide: diverse populations and cancer survivorship. Cancer. 2005;104(11 Suppl):2577–83.

    Article  PubMed  Google Scholar 

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Acknowledgments

This work was supported by the Oncofertility Consortium NIH 5UL1DE019587.

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Correspondence to Jennifer E. Mersereau M.D., M.S.C.I. .

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Mersereau, J.E., Brandon, A.R. (2014). Communicating Across Diverse and Differently Literate Audiences. In: Woodruff, T., Clayman, M., Waimey, K. (eds) Oncofertility Communication. Springer, New York, NY. https://doi.org/10.1007/978-1-4614-8235-2_2

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  • DOI: https://doi.org/10.1007/978-1-4614-8235-2_2

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