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Journal of Cancer Survivorship

, Volume 8, Issue 1, pp 21–30 | Cite as

A novel intervention using interactive technology and personal narratives to reduce cancer disparities: African American breast cancer survivor stories

  • Maria PérezEmail author
  • Julianne A. Sefko
  • Deb Ksiazek
  • Balaji Golla
  • Chris Casey
  • Julie A. Margenthaler
  • Graham Colditz
  • Matthew W. Kreuter
  • Donna B. Jeffe
Article

Abstract

Purpose

There has been a paucity of interventions developed for African American women to address persistent health disparities between African American and Caucasian breast cancer patients. We developed and piloted a technologically innovative, culturally targeted, cancer-communication intervention for African American breast cancer patients using African American breast cancer survivor stories.

Methods

We rated 917 clips from a video library of survivors’ stories for likability, clarity and length, and emotional impact (scaled responses) and categorized each clip by theme (Coping, Support and Relationships, Healthcare Experiences, Follow-up Care, Quality of Life, and Treatment Side Effects). We selected 207 clips told by 35 survivors (32–68 years old; 4–30 years after diagnosis), fitting one of 12 story topics, for inclusion in the interactive video program loaded onto a touch-screen computer. Videos can be searched by storyteller or story topics; stories with the strongest emotional impact were displayed first in the video program.

Results

We pilot tested the video program with ten African American breast cancer survivors (mean age, 54; range 39–68 years), who, after training, watched videos and then evaluated the stories and video-program usability. Survivor stories were found to be “interesting and informative,” and usability was rated highly. Participants identified with storytellers (e.g., they “think a lot like me,” “have values like mine”) and agreed that the stories convinced them to receive recommended surveillance mammograms.

Conclusions

This novel, cancer-communication technology using survivor stories was very favorably evaluated by breast cancer survivors and is now being tested in a randomized controlled clinical trial.

Implications for Cancer Survivors

Breast cancer survivors can draw support and information from a variety of sources, including from other breast cancer survivors. We developed the survivor stories video program specifically for African American survivors to help improve their quality of life and adherence to follow-up care. Breast cancer survivors’ experiences with treatment and living with cancer make them especially credible messengers of cancer information. Our novel, interactive technology is being tested in a randomized controlled trial and will be more broadly disseminated to reach a wider audience.

Keywords

Breast cancer Survivor stories African Americans Cancer communication Narratives Cancer information 

Notes

Acknowledgments

This study was supported by a grant from the National Cancer Institute’s Centers of Excellence in Cancer Communication Research program (2P50 CA095815; PI: Matthew Kreuter). The conduct of this study benefited from services provided by the Health Behavior, Communication, and Outreach Core, which is supported, in part, by the National Cancer Institute Cancer Center Support Grant to the Alvin J. Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine in St. Louis, Missouri (P30 CA091842; PI: Timothy Eberlein).

References

  1. 1.
    Joslyn SA, West MM. Racial differences in breast carcinoma survival. Cancer. 2000;1(88):114–23.CrossRefGoogle Scholar
  2. 2.
    Cianfrocca M, Goldstein LJ. Prognostic and predictive factors in early-stage breast cancer. Oncologist. 2004;9(6):606–16. doi: 10.1634/theoncologist.9-6-606.CrossRefPubMedGoogle Scholar
  3. 3.
    Elledge RM, Clark GM, Chamness GC, Osborne CK. Tumor biologic factors and breast cancer prognosis among white, Hispanic, and black women in the United States. J Natl Cancer Inst. 1994;86:705–12.CrossRefPubMedGoogle Scholar
  4. 4.
    Demicheli R, Retsky M, Hrushesky W, Baum M, Gukas I, Jatoi I. Racial disparities in breast cancer outcome. Cancer. 2007;110(9):1880–8.CrossRefPubMedGoogle Scholar
  5. 5.
    Deshpande AD, Jeffe DB, Gnerlich J, Iqbal AZ, Thummalakunta A, Margenthaler JA. Racial disparities in breast cancer survival: an analysis by age and stage. J Surg Res. 2009;153(1):105–13.PubMedCentralCrossRefPubMedGoogle Scholar
  6. 6.
    Hassett MJ, Griggs JJ. Disparities in breast cancer adjuvant chemotherapy: moving beyond yes or no. J Clin Oncol. 2009;27(13):2120–1.CrossRefPubMedGoogle Scholar
  7. 7.
    Hershman DL, Unger JM, Barlow WE, Hutchins LF, Martino S, Osborne CK, et al. Treatment quality and outcomes of African American versus white breast cancer patients: retrospective analysis of Southwest Oncology studies S8814/S8897. J Clin Oncol. 2009;27(13):2157–62.PubMedCentralCrossRefPubMedGoogle Scholar
  8. 8.
    Kim SH, Ferrante J, Won BR, Hameed M. Barriers to adequate follow-up during adjuvant therapy may be important factors in the worse outcome for Black women after breast cancer treatment. World J Surg Oncol. 2008;6(26)Google Scholar
  9. 9.
    Bickell NA, LePar F, Wang JJ, Leventhal H. Lost opportunities: physicians’ reasons and disparities in breast cancer treatment. J Clin Oncol. 2007;25(18):2516–21.CrossRefPubMedGoogle Scholar
  10. 10.
    Bickell NA, Wang JJ, Oluwole S, Schrag D, Godfrey H, Hiotis K, et al. Missed opportunities: racial disparities in adjuvant breast cancer treatment. J Clin Oncol. 2006;24(9):1357–62.CrossRefPubMedGoogle Scholar
  11. 11.
    McWhorter WP, Mayer WJ. Black/white differences in type of initial breast cancer treatment and implications for survival. Am J Public Health. 1987;77:1515–7.PubMedCentralCrossRefPubMedGoogle Scholar
  12. 12.
    Li CI, Malone KE, Daling JR. Differences in breast cancer stage, treatment, and survival by race and ethnicity. Arch Intern Med. 2003;163(1):49–56.CrossRefPubMedGoogle Scholar
  13. 13.
    Colleoni M, Mandala M, Peruzzotti G, Robertson C, Bredart A, Goldhirsch A. Depression and degree of acceptance of adjuvant cytotoxic drugs. Lancet. 2000;356(9238):1326–7.CrossRefPubMedGoogle Scholar
  14. 14.
    Ell K, Sanchez K, Vourlekis B, Lee PJ, Dwight-Johnson M, Lagomasino I, et al. Depression, correlates of depression, and receipt of depression care among low-income women with breast or gynecologic cancer. J Clin Oncol. 2005;23(13):3052–60.PubMedCentralCrossRefPubMedGoogle Scholar
  15. 15.
    DiMatteo MR, Lepper HS, Croghan TW. Depression is a risk factor for noncompliance with medical treatment: meta-analysis of the effects of anxiety and depression on patient adherence. Arch Intern Med. 2000;160(14):2101–7.CrossRefPubMedGoogle Scholar
  16. 16.
    Reynolds P, Hurley S, Torres M, Jackson J, Boyd P, Chen VW. Use of coping strategies and breast cancer survival: results from the Black/White Cancer Survival Study. Am J Epidemiol. 2000;152(10):940–9.CrossRefPubMedGoogle Scholar
  17. 17.
    Lehto US, Ojanen M, Dyba T, Aromaa A, Kellokumpu-Lehtinen P. Baseline psychosocial predictors of survival in localised breast cancer. Br J Cancer. 2006;94(9):1245–52.PubMedCentralCrossRefPubMedGoogle Scholar
  18. 18.
    Banerjee M, George J, Yee C, Hryniuk W, Schwartz K. Disentangling the effects of race on breast cancer treatment. Cancer. 2007;110(10):2169–77.CrossRefPubMedGoogle Scholar
  19. 19.
    Hinyard LJ, Kreuter MW. Using narrative communication as a tool for health behavior change: a conceptual, theoretical, and empirical overview. Health Educ Behav. 2007;34(5):777–92. doi: 10.1177/1090198106291963.CrossRefPubMedGoogle Scholar
  20. 20.
    Kreuter M, Green M, Cappella J, Slater M, Wise M, Storey D, et al. Narrative communication in cancer prevention and control: a framework to guide research and application. Ann Behav Med. 2007;33(3):221–35. doi: 10.1007/bf02879904.CrossRefPubMedGoogle Scholar
  21. 21.
    Green MC. Research challenges: research challenges in narrative persuasion. Inf Des J. 2008;16(1):47–52. doi: 10.1075/idj.16.1.07gre.Google Scholar
  22. 22.
    Kreuter MW, Buskirk TD, Holmes K, Clark EM, Robinson L, Si X, et al. What makes cancer survivor stories work? An empirical study among African American women. J Cancer Survivorship. 2008;2(1):33–44.CrossRefGoogle Scholar
  23. 23.
    Kreuter MW, Holmes K, Alcaraz K, Kalesan B, Rath S, Richert M et al. Comparing narrative and informational videos to increase mammography in low-income African American women. Patient Educ Couns. 2010;81, Supplement 1(0):S6-S14Google Scholar
  24. 24.
    McQueen A, Kreuter MW, Kalesan B, Alcaraz KI. Understanding narrative effects: the impact of breast cancer survivor stories on message processing, attitudes, and beliefs among African American women. Health Psychol. 2011;30(6):674–82.PubMedCentralCrossRefPubMedGoogle Scholar
  25. 25.
    McQueen A, Kreuter MW. Women’s cognitive and affective reactions to breast cancer survivor stories: a structural equation analysis. Patient Educ Couns. 2010;81 Suppl(81):S15-21Google Scholar
  26. 26.
    Huberman AM, Miles MB. Data management and analysis methods. In: Denzin NK, Lincoln YS, editors. Handbook of qualitative research. Thousand Oaks, CA: Sage Publications; 1994. p. 428–44.Google Scholar
  27. 27.
    Miles MB, Huberman AM. Qualitative data analysis. Beverly Hills, CA: Sage; 1984.Google Scholar
  28. 28.
    Glaser BG, Strauss AL. The discovery of grounded theory: strategies for qualitative research. New York: Aldine de Gruyter; 1967.Google Scholar
  29. 29.
    Cohen J. Defining identification: a theoretical look at the identification of audiences. With media characters. Mass Commun Soc. 2001;4(3):245–64.CrossRefGoogle Scholar
  30. 30.
    Simons HW, Berkowitz NN, Moyer RJ. Similarity, credibility, and attitude change: a review and a theory. Psychol Bull. 1970;73(1):1–16. doi: 10.1037/h0028429.CrossRefGoogle Scholar
  31. 31.
    Roskos-Ewoldsen DR, Fazio RH. On the orienting value of attitudes: attitude accessibility as a determinant of an object’s attraction of visual attention. J Personal Soc Psychol. 1992;63(2):198–211.CrossRefGoogle Scholar
  32. 32.
    Watson D, Clark LA, Tellegen A. Development and validation of brief measures of positive and negative affect: the PANAS scales. J Personal Soc Psychol. 1988;54(6):1063–70.CrossRefGoogle Scholar
  33. 33.
    National Cancer Institute. Health Information National Trends Survey. http://hints.cancer.gov/docs/HINTS%202007%20CATI%20Instrument%20(English).pdf. Accessed March 12, 2013
  34. 34.
    Wang JH, Schwartz MD, Luta G, Maxwell AE, Mandelblatt JS. Intervention tailoring for Chinese American women: comparing the effects of two videos on knowledge, attitudes and intentions to obtain a mammogram. Health Educ Res. 2012;27(3):523–36.PubMedCentralCrossRefPubMedGoogle Scholar
  35. 35.
    Champion VL, Springston JK, Zollinger TW, Saywell RMJ, Monahan PO, Zhao Q, et al. Comparison of three interventions to increase mammography screening in low income African American women. Cancer Detect Prev. 2006;30(6):535–44.CrossRefPubMedGoogle Scholar
  36. 36.
    Sherman DW, Haber J, Hoskins CN, Budin WC, Maislin G, Shukla S, et al. The effects of psychoeducation and telephone counseling on the adjustment of women with early-stage breast cancer. Appl Nurs Res. 2012;25(1):3–16.CrossRefPubMedGoogle Scholar
  37. 37.
    Collins K, Liu Y, Schootman M, Aft R, Yan Y, Dean G et al. Effects of breast cancer surgery and surgical side effects on body image over time. Breast Cancer Research and Treatment. 2011;126(1):167–76. PMCID: PMC3265936Google Scholar
  38. 38.
    Pérez M, Liu Y, Schootman M, Aft R, Schechtman K, Gillanders W et al. Changes in sexual problems over time in women with and without early-stage breast cancer. Menopause 2010;17(5):924–37. PMCID: PMC 2939280Google Scholar
  39. 39.
    Liu Y, Perez M, Schootman M, Aft RL, Gillanders WE, Jeffe DB. Correlates of fear of cancer recurrence in women with ductal carcinoma in situ and early invasive breast cancer. Breast Cancer Research and Treatment. 2011;130(1):165–73. PMCID: PMC3227390Google Scholar
  40. 40.
    Gustafson DH, McTavish FM, Stengle W, Ballard D, Hawkins R, Shaw BR, et al. Use and impact of eHealth system by low-income women with breast cancer. J Health Commun. 2005;10:195–218.CrossRefPubMedGoogle Scholar
  41. 41.
    Gustafson DH, Hawkins R, Pingree S, McTavish F, Arora NK, Mendenhall J, et al. Effect of computer support on younger women with breast cancer. J Gen Intern Med. 2001;16(7):435–45.PubMedCentralCrossRefPubMedGoogle Scholar
  42. 42.
    Hawkins RP, Pingree S, Shaw B, Serlin RC, Swoboda C, Han JY et al. Mediating processes of two communication interventions for breast cancer patients. Patient Educ Couns.2010;81(S48-53)Google Scholar
  43. 43.
    Gustafson DH, Hawkins R, McTavish F, Pingree S, Chen WC, Volrathongchai K, et al. Internet-based interactive support for cancer patients: are integrated systems better? J Commun. 2008;58(2):238–57.PubMedCentralCrossRefPubMedGoogle Scholar
  44. 44.
    Wise M, Han JY, Shaw B, McTavish F, Gustafson DH. Effects of using online narrative and didactic information on healthcare participation for breast cancer patients. Patient Educ Couns. 2008;70(3):348–56.PubMedCentralCrossRefPubMedGoogle Scholar
  45. 45.
    Eddens KS, Kreuter MW, Morgan JC, Beatty KE, Jasim SA, Garibay L et al. Disparities by race and ethnicity in cancer survivor stories available on the web. J Med Internet Res. 2009;11(4)Google Scholar
  46. 46.
    Zickuhr K, Smith A. Digital differences. Pew Internet & American Life Project, April 13, 2012. http://www.pewinternet.org/Reports/2012/Digital-differences.aspx. Accessed on March 12, 2013
  47. 47.
    Smith A. 46% of American adults are smartphone owners. Pew Internet & American Life Project, March 1, 2012. http://pewinternet.org/∼/media/Files/Reports/2012/Smartphone%20ownership%202012.pdf. Accessed on March 12, 2013
  48. 48.
    Grindel CG, Brown L, Caplan L, Blumenthal D. The effect of breast cancer screening messages on knowledge, attitudes, perceived risk, and mammography screening of African American women in the rural South. Oncol Nurs Forum. 2004;31(4):801–8.CrossRefPubMedGoogle Scholar

Copyright information

© Springer Science+Business Media New York 2013

Authors and Affiliations

  • Maria Pérez
    • 1
    • 4
    Email author
  • Julianne A. Sefko
    • 1
  • Deb Ksiazek
    • 1
  • Balaji Golla
    • 2
  • Chris Casey
    • 2
  • Julie A. Margenthaler
    • 1
    • 3
  • Graham Colditz
    • 1
    • 3
  • Matthew W. Kreuter
    • 1
    • 2
    • 3
  • Donna B. Jeffe
    • 1
    • 3
  1. 1.Washington University School of MedicineSaint LouisUSA
  2. 2.Washington University George Warren Brown School of Social WorkSaint LouisUSA
  3. 3.Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of MedicineSaint LouisUSA
  4. 4.Division of Health Behavior ResearchWashington University School of MedicineSt. LouisUSA

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