Journal of Community Genetics

, Volume 4, Issue 2, pp 251–261 | Cite as

“You don’t have to keep everything on paper”: African American women’s use of family health history tools

  • Tess Thompson
  • Joann Seo
  • Julia Griffith
  • Melanie Baxter
  • Aimee James
  • Kimberly A. Kaphingst
Original Article


Little is known about African American women’s collection of family health history (FHH) information and use of FHH tools. Most FHH research has investigated tools that use a biomedical paradigm, but other kinds of tools, such as those that include information about family social context, have been developed for use in diverse populations. Using mixed methods, we interviewed 32 African American women about behavioral steps to collecting FHH, family communication about health, and reactions to a biomedical FHH tool. Participants chose one of two FHH tools to take home. A follow-up call three weeks later assessed tool use. Many participants expressed support for writing down FHH information, but at baseline few had done so; most participants who had collected FHH information had done so verbally. Participants reacted positively to the biomedical FHH tool used during the interview, with many saying it allowed them to see patterns in their FHH. At follow-up, 67 % reported using their FHH tool, primarily to promote discussion among family members; only 32 % used the tool to write down FHH information. Although participants thought collecting FHH information was important and had positive reactions to both tools, the majority did not use the tools to write down information and instead collected FHH informally. These findings underline the importance of separating the components of FHH collection behaviors to analyze the steps used in FHH creation. Practitioners should consider additional methods of encouraging patients to create written FHHs in order to share the information with health care providers.


Family health history Family communication Racial/ethnic minorities Cancer 


  1. Acheson L (2003) Fostering applications of genetics in primary care: what will it take? Genet Med 5(2):63–65PubMedCrossRefGoogle Scholar
  2. Acheson LS, Wang C, Zyzanski SJ, Lynn A, Ruffin MT, Gramling R, Rubenstein WS, O'Neill SM, Nease DE (2010) Family history and perceptions about risk and prevention for chronic diseases in primary care: a report from the Family Healthware Impact Trial. Genet Med 12(4):212–218PubMedCrossRefGoogle Scholar
  3. Acton R, Burst N, Casebeer L et al (2000) Knowledge, attitudes, and behaviors of Alabama’s primary care physicians regarding cancer genetics. Acad Med 75(8):850–852PubMedCrossRefGoogle Scholar
  4. American Cancer Society (2012) American Cancer Society Guidelines for the Early Detection of Cancer.
  5. Audrain-McGovern J, Hughes C, Patterson F (2003) Effecting behavior change: awareness of family history. Am J Prev Med 24(2):183–189PubMedCrossRefGoogle Scholar
  6. Beatty P, Willis G (2007) Research synthesis: the practice of cognitive interviewing. Public Opin Q 71:287–311CrossRefGoogle Scholar
  7. Berg AO, Baird MA, Botkin JR, Driscoll DA, Fishman PA, Guarino PD, Hiatt RA, Jarvik GP, Millon-Underwood S, Morgan TM, Mulvihill JJ, Pollin TI, Schimmel SR, Stefanek ME, Vollmer WM, Williams JK (2009) National Institutes of Health State-of-the-Science conference statement: family history and improving health. Ann Intern Med 151(12):872–877PubMedGoogle Scholar
  8. Buchanan AH, Skinner CS, Rawl SM, Moser BK, Champion VL, Scott LL, Strigo TS, Bastian L (2005) Patients’ interest in discussing cancer risk and risk management with primary care physicians. Patient Educ Couns 57:77–87PubMedCrossRefGoogle Scholar
  9. Butty J, Richardson F, Mouton C, Royal C, Green R, Munroe K (2012) Evaluation findings from genetics and family health history community-based workshops for African Americans. J Community Genet 3:1–12CrossRefGoogle Scholar
  10. Carmona RH, Wattendorf DJ (2005) Personalizing prevention: the U.S. Surgeon General’s family history initiative. Am Fam Physician 71(1):36–39PubMedGoogle Scholar
  11. Chew LD, Griffin JM, Partin MR, Noorbaloochi S, Grill JP, Snyder A, Bradley KA, Nugent SM, Baines AD, VanRyn M (2008) Validation of screening questions for limited health literacy in a large VA outpatient population. J Gen Intern Med 23(5):561–566PubMedCrossRefGoogle Scholar
  12. Clarke AJ (2009) Musings on genome medicine: the value of family history. Genome Medicine 1:75PubMedCrossRefGoogle Scholar
  13. Coffey A, Atkinson P (1996) Making sense of qualitative data: Complementary research strategies. Sage Publications, Thousand Oaks, CAGoogle Scholar
  14. Cohn W, Ropka M, Pelletier S, Barrett J, Kinzie M, Harrison M, Liu Z, Miesfeldt S, Tucker A, Worrall B, Gibson J, Mullins I, Elward K, Franko J, Guterbock T, Knaus (2010) Health Heritage, a web-based tool for the collection and assessment of family health history: initial user experience and analytic validity. Public Health Genomics 13(7–8):477–491PubMedCrossRefGoogle Scholar
  15. Cree RA, Lynch J, Au MG, Myers MF (2009) Decisions to seek healthcare based on family health history among urban Appalachian women. J Genet Couns 18:534–550PubMedCrossRefGoogle Scholar
  16. Dunlop K, Barlow-Stewart K (2009) Start the conversation: the New South Wales (Australia) Family Health History Campaign. Public Health Genomics 13(5):301–309PubMedCrossRefGoogle Scholar
  17. Feero WG, Bigley MB, Brinner KM (2008) New standards and enhanced utility for family health history information in the electronic health record: an update from the American Health Information Community’s Family Health History Multi-Stakeholder Workgroup. J Am Med Inform Assoc 15(6):723–728PubMedCrossRefGoogle Scholar
  18. Fuller M, Myers M, Webb T, Tabangin M, Prows C (2010) Primary care providers’ responses to patient-generated family history. J Genet Couns 19(1):84–96PubMedCrossRefGoogle Scholar
  19. Genetic Alliance (2009) Programs. Accessed January 29, 2009
  20. Grover S, Stoffel EM, Bussone L, Tschoegl E, Syngal S (2004) Physician assessment of family cancer history and referral for genetic evaluation in colorectal cancer patients. Clin Gastroenterol Hepatol 2:813–819PubMedCrossRefGoogle Scholar
  21. Guttmacher AE, Collins FS, Carmona RH (2004) The family history - More important than ever. N Engl J Med 351(22):2333–2336PubMedCrossRefGoogle Scholar
  22. Hampel H, Sweet K, Westman JA, Offit K, Eng C (2004) Referral for cancer genetics consultation: a review and compilation of risk assessment criteria. J Med Genet 41:81–91PubMedCrossRefGoogle Scholar
  23. Kaphingst K, Goodman M, Pandya C, Garg P, Stafford J, Lachance C (2012) Factors affecting frequency of communication about family health history with family members and doctors in a medically underserved population. Patient Educ Couns 88(2):291–297PubMedCrossRefGoogle Scholar
  24. Kelly K, Sweet K (2007) In search of a familial cancer risk assessment tool. Clin Genet 71:76–83PubMedCrossRefGoogle Scholar
  25. Miles M (1983) Qualitative data as an attractive nuisance: The problem of analysis. In: Maanen J (ed) Qualitative Methodology. Sage Publications, New DehliGoogle Scholar
  26. Miles M, Huberman A (1994) Qualitative data analysis: An expanded sourcebook. Sage Publications, Thousand Oaks, CAGoogle Scholar
  27. Murray MF, Holbrook KJ, Giovanni MA (2007) Brigham and Women’s Hospital Family History Project. Final Report on Phase 1: A Hospital Employee-Focused Family History Project. Brigham and Women’s Hospital and Harvard Medical School. Accessed September 28, 2012
  28. National Human Genome Research Institute (2011) Family History Demonstration Projects. Accessed September 27, 2012
  29. O'Leary J, Edelson VT, Gardner NR, Gepp AJ, Kyler P, Moore PJ, O'Quinn K, Petruccio CL, Terry SF, Bowen D (2009) Community empowerment for public health: the role of family health history. Paper presented at the American Public Health Association annual meeting. Philadelphia, PA, November 9, 2009Google Scholar
  30. O'Neill SM, Rubenstein WS, Wang C, Yoon PW, Acheson LS, Rothrock N, Starzyk EJ, Beaumont JL, Galliher JM, Ruffin MT (2009) Familial risk for common diseases in primary care: the family healthware impact trial. Am J Prev Med 36(6):506–514PubMedCrossRefGoogle Scholar
  31. Orom H, Coté ML, González HM, Underwood W, Schwartz AG (2007) Family history of cancer: Is it an accurate indicator of cancer risk in the immigrant population? Am Cancer Soc 112(2):399–406Google Scholar
  32. Petruccio C, Mills Shaw KR, Boughman J, Fernandez C, Harlow I, Kruesi M, Kyler P, Lloyd-Puryear MA, O'Leary J, Skillman A, Terry S, McKain F (2008) Health choices through family history: a community approach to family history awareness. Community Genet 11:343–351PubMedGoogle Scholar
  33. Qureshi N, Bethea J, Modell B, Brennan P, Papageorgiou A, Raeburn S, Hapgood R, Modell M (2005) Collecting genetic information in primary care: evaluating a new family history tool. Fam Pract Adv Access 22(6):663–669CrossRefGoogle Scholar
  34. Qureshi N, Carroll JC, Wilson B, Santaguida P, Allanson J, Brouwers M, Raina P (2009) The current state of cancer family history collection tools in primary care: a systematic review. Genet Med 11(7):495–506PubMedCrossRefGoogle Scholar
  35. Reid G, Walter F, Brisbane J, Emery J (2009) Family history questionnaires designed for clinical use: a systematic review. Public Health Genomics 12:73–83PubMedCrossRefGoogle Scholar
  36. Rich EC, Burke W, Heaton CJ, Haga S, Pinsky L, Short P, Acheson L (2004) Reconsidering the family history in primary care. J Gen Intern Med 19(3):273–280PubMedCrossRefGoogle Scholar
  37. Sandelowski M (1995) Qualitative analysis: what it is and how to begin. Res Nurs Health 18:371–375PubMedCrossRefGoogle Scholar
  38. Scheuner MT, Wang S-J, Raffel LJ, Larabell SK, Rotter JI (1997) Family history: a comprehensive genetic risk assessment method for the chronic conditions of adulthood. Am J Med Genet 71(3):315–324PubMedCrossRefGoogle Scholar
  39. Schroy I, Paul S, Barrison AF, Ling BS, Wilson S, Geller AC (2002) Family history and colorectal cancer screening: a survey of physician knowledge and practice patterns. Am J Gastroenterol 97(4):1031–1036PubMedCrossRefGoogle Scholar
  40. U.S. Surgeon General’s Office (2011) My Family Health Portrait. Accessed September 20, 2012
  41. Sweet K, Bradley T, Westman JA (2002) Identification and referral of families at high risk for cancer susceptibility. J Clin Oncol 20(2):528–537PubMedCrossRefGoogle Scholar
  42. Tyler CV, Snyder CW (2006) Cancer risk assessment: examining the family physician’s role. J Am Board Fam Med 19:468–477PubMedCrossRefGoogle Scholar
  43. Valdez R, Yoon PW, Qureshi N, Green RF, Khoury MJ (2010) Family history in public health practice: a genomic tool for disease prevention and health promotion. Annu Rev Public Health 31:69–87PubMedCrossRefGoogle Scholar
  44. Vernon SW, Meissner H, Klabunde C, Rimer BK, Ahnen DJ, Bastani R, Mandelson MT, Nadel MR, Sheinfeld-Gorin S, Zapka J (2004) Measures for ascertaining use of colorectal cancer screening in behavioral, health services, and epidemiologic research. Cancer Epidemiol Biomark Prev 13:898–905Google Scholar
  45. Wallace JP, Baugh C, Cornett S, Hood B, Prows CA, Ryan N, Warren NS, Au MG, Brown MK, Glandorf K, Jarrell JJ, Nolan TL, Sorrell J, Walters J, Myers MF (2009) A family history demonstration project among women in an urban Appalachian community. Prog Community Health Partnerships 3(2):155–163CrossRefGoogle Scholar
  46. Wang C, Gallo RE, Fleisher L, Miller SM (2011) Literacy assessment of family health history tools for public health prevention. Public Health Genomics 14(4–5):222–237PubMedCrossRefGoogle Scholar
  47. Wideroff L, Garceau AO, Greene MH, Dunn M, McNeel T, Mai P, Willis G, Gonsalves L, Martin M, Graubard BI (2010) Coherence and completeness of population-based family cancer reports. Cancer Epidemiol Biomarkers Prev 19(3):799–810PubMedCrossRefGoogle Scholar
  48. Willis G (2005) Cognitive interviewing: A tool for improving questionnaire design. Sage Publications, Thousand Oaks, CAGoogle Scholar
  49. Yoon PW, Scheuner MT, Peterson-Oehlke KL, Gwinn M, Faucett A, Khoury MJ (2002) Can family history be used as a tool for public health and preventive medicine? Genet Med 4(4):304–310PubMedCrossRefGoogle Scholar
  50. Yoon PW, Scheuner MT, Gwinn M, Khoury MJ, Jorgensen C, Hariri S, Lyn S (2004) Awareness of family history as a risk factor for disease – United States, 2004. Morb Mortal Wkly Rep 53(44):1044–1047Google Scholar
  51. Yoon PW, Scheuner MT, Jorgensen C, Khoury MJ (2009) Developing Family Healthware, a family history screening tool to prevent common chronic diseases. Prev Chronic Dis 6(1):1–11Google Scholar

Copyright information

© Springer-Verlag Berlin Heidelberg 2013

Authors and Affiliations

  • Tess Thompson
    • 1
  • Joann Seo
    • 1
  • Julia Griffith
    • 1
  • Melanie Baxter
    • 2
  • Aimee James
    • 3
  • Kimberly A. Kaphingst
    • 1
    • 4
  1. 1.Health Communication Research LaboratoryWashington University in St. LouisSt. LouisUSA
  2. 2.Siteman Cancer CenterWashington University School of MedicineSt. LouisUSA
  3. 3.Division of Public Health SciencesWashington University School of MedicineSt. LouisUSA
  4. 4.Division of Public Health SciencesWashington University School of MedicineSt. LouisUSA

Personalised recommendations