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Journal of Genetic Counseling

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01.04.2009 | Original Research

Life Trajectories, Genetic Testing, and Risk Reduction Decisions in 18–39 Year Old Women at Risk for Hereditary Breast and Ovarian Cancer

verfasst von: Rebekah Hamilton, Janet K. Williams, Barbara J. Bowers, Kathleen Calzone

Erschienen in: Journal of Genetic Counseling | Ausgabe 2/2009

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Abstract

This qualitative study identified four life trajectories that influenced the decision in young women to have genetic testing for mutations in BRCA1/2 and subsequent risk reduction decisions after receiving a positive mutation result. Fifty nine women between the ages of 18–39 years were interviewed in this grounded theory study, 44 of those tested were found to have a mutation in either BRCA1 or BRCA2. Of those with a mutation, 23 had no history of cancer and 21 had a breast cancer diagnosis. Analysis of the 44 participants tested found that risk reducing decisions were related to the life trajectories that preceded genetic testing. These life trajectories included: 1) Long-standing awareness of breast cancer in the family, 2) Loss of one’s mother to breast cancer at a young age, 3) Expression of concern by a health care provider, and 4) Personal diagnosis of breast cancer. Understanding possible influences behind decision making for genetic testing and risk reduction in young women may assist health care providers in offering age appropriate guidance and support.

Arnett, J. J. (1994). Are college students adults? Their conceptions of the transitions to adulthood. Journal of Adult Development, 1, 154–168. doi:10.1007/BF02277582.CrossRef

Arnett, J. J. (1997). Young people's conceptions of the transitions to adulthood. Youth & Society, 29, 1–23. doi:10.1177/0044118X97029001001.CrossRef

Arnett, J. J. (1998). Learning to stand alone: the contemporary American transition to adulthood in cultural and historical context. Human Development, 41, 295–315. doi:10.1159/000022591.CrossRef

Arnett, J. J. (2000). Emerging adulthood: a theory of development from the late teens through the twenties. The American Psychologist, 55(5), 469–480. doi:10.1037/0003-066X.55.5.469.PubMedCrossRef

Arnett, J. J. (2001). Conceptions of the transitions to adulthood: prospectives from adolescents through midlife. Journal of Adult Development, 8(2), 133–143. doi:10.1023/A:1026450103225.CrossRef

Avis, N. E., Crawford, S., & Manuel, J. (2003). Psychosocial problems among younger women with breast cancer. Psycho-Oncology, 13(5), 295–308. doi:10.1002/pon.744.CrossRef

Barcenas, C. H., Hosain, M., Arun, B., Zong, J., Zhou, X., Chen, J., et al. (2006). Assessing BRCA Carrier Probabilities in Extended Families. Journal of Clinical Oncology, 24(3), 354–360. doi:10.1200/JCO.2005.02.2368.PubMedCrossRef

Beck, C. T. (2005). Benefits of participating in internet interviews: women helping women. Qualitative Health Research, 15(3), 411–422. doi:10.1177/1049732304270837.PubMedCrossRef

Beery, T. A., & Williams, J. K. (2007). Risk reduction and health promotion behaviors following genetic testing for adult-onset disorders. Genetic Testing, 11(2), 111–`123.PubMedCrossRef

Berliner, J. L., & Fay, A. M. (2007). Risk assessment and genetic counseling for hereditary breast and ovarian cancer: recommendations of the National Society of Genetic Counselors. Journal of Genetic Counseling, 16(3), 241–260.PubMedCrossRef

Bloom, J. R., Stewart, S. L., Chang, S., & Banks, P. J. (2004). Then and now: quality of life of young breast cancer survivors. Psycho-Oncology, 13, 147–160. doi:10.1002/pon.794.PubMedCrossRef

Blumer, H. (1969). Symbolic Interactionism: Perspective and method. Berkeley: University of California Press.

Bottorff, J. L., Ratner, P. A., Balneaves, L. G., Richardson, C. G., McCullum, M., Hack, T., et al. (2002). Women's interest in genetic testing for breast cancer risk: The influence of sociodemographics and knowledge. Cancer Epidemiology, Biomarkers & Prevention, 11, 89–95.

Bowers, B. J. (1989). Grounded Theory: From conceptualization to research process. In B. Sarter (Ed.), Paths to knowledge: Innovative research methods for nursing (pp. 33–58). New York: National League of Nursing.

Bryant, A., & Charmaz, K. (2007). Grounded theory in historical perspective: An epistemological account. In A. Bryant, & K. Charmaz (Eds.), The SAGE handbook of Grounded Theory (pp. 31–57). Los Angeles. CA: Sage Publications.

Burke, W., Daly, M. B., Garber, J. E., & Botkin, J. R. (1997). Recommendations for follow-up care of individuals with an inherited predisposition to cancer: II. BRCA1 and BRCA2. Journal of the American Medical Association, 277(12), 997–1003. doi:10.1001/jama.277.12.997.PubMedCrossRef

Caron, C. D., & Bowers, B. J. (2001). Methods and application of dimensional analysis: A contribution to concept and knowledge development in nursing. In B. Rogers, & K. Knafl (Eds.), Concept development in nursing, Foundations, techniques, and applications (vol. Vol. 2, (pp. 285–319)). Philadelphia: W.B.Saunders.

Charmaz, K. (2006). Constructing Grounded Theory: A practical guide through qualitative analysis. Thousand Oaks: SAGE.

Crooks, D. L. (2001). The importance of symbolic interactionism in grounded theory research on women's health. Health Care for Women International, 22, 11–27. doi:10.1080/073993301300003054.PubMedCrossRef

d'Agincourt-Canning, L. (2005). The effect of experiential knowledge on construction of risk perception in hereditary breast/ovarian cancer. Journal of Genetic Counseling, 14(1), 55–69.PubMedCrossRef

d'Agincourt-Canning, L. (2006). A gift or a yoke? women's and men's responses to genetic risk information from BRCA1 and BRCA2 testing. Clinical Genetics, 70, 462–472.PubMedCrossRef

Decruyenaere, M., Evers-Kiebooms, G., Welkenhuysen, M., Denayer, L., & Claes, E. (2000). Cognitive representations of breast cancer, emotional distress and preventative health behavior: a theoretical perspective. Psycho-Oncology, 9, 528–536.PubMedCrossRef

Denzin, N. (1992). Symbolic interactionism and cultural studies. Cambridge, MA: Blackwell.

Dunn, J., & Steginga, S. K. (2000). Young women's experience of breast cancer: Defining young and identifying concerns. Psycho-Oncology, 9, 137–146.PubMedCrossRef

Easton, D. F., Ford, D., Bishop, D. T., & Consortium, B. C. L. (1995). Breast and ovarian cancer incidence in BRCA1 mutation. American Journal of Human Genetics, 56, 265–271.PubMed

Eisen, A., Lubinski, J., Klijn, J. G. M., Moller, P., Lynch, H. T., Offit, K., et al. (2005). Breast cancer risk following bilateral oophorectomy in BRCA1 and BRCA2 mutation carriers: an international case-control study. Journal of Clinical Oncology, 23(30), 7491–7496.PubMedCrossRef

Erikson, E. H. (1963). Childhood and society. New York: W.W. Norton.

Ford, D., Easton, D. F., Stratton, M., Narod, S., Goldgar, D., Devilee, P., et al. (1998). Genetic heterogeneity and penetrance analysis of the BRCA1 and BRCA2 genes in breast cancer families. American Journal of Human Genetics, 62, 676–689.PubMedCrossRef

Glaser, B. G., & Strauss, A. L. (1967). The discovery of Grounded Theory: Strategies for qualitative research. Hawthorne, New York: Aldine De Gruyter.

Hallowell, N., Foster, C., Eles, R., Ardern-Jones, A., & Watson, M. (2004a). Accommodating risk: Responses to BRCA1/2 genetic testing of women who have had cancer. Social Science and Medicine, 59, 553–565.PubMedCrossRef

Hallowell, N., Mackay, J., Richards, M., Gore, M., & Jacobs, I. (2004b). High-risk premenopausal women's experiences of undergoing oopherectomy: a descriptive study. Genetic Testing, 8(2), 148–156.PubMedCrossRef

Hamilton, R. J. (2003). Experiencing predictive genetic testing in families with Huntington's disease and hereditary breast and ovarian cancer. Unpublished Dissertation, Madison, WI.

Hamilton, R. J., & Bowers, B. J. (2006). Internet recruitment and email interviewing in qualitative studies. Qualitative Health Research, 16(6), 821–835.PubMedCrossRef

Hamilton, R. J., & Bowers, B. J. (2007). The theory of genetic vulnerability: a Roy model exemplar. Nursing Science Quarterly, 20(3), 254–265.PubMedCrossRef

Jemal, A., Siegel, R., Ward, E., Murray, T., Xu, J., & Thun, M. J. (2008). Cancer statistics. CA: A cancer journal for clinicians, 57(1), 43–66.CrossRef

Kenen, R., Ardern-Jones, A., & Eeles, R. (2003). Living with chronic risk: Healthy women with a family history of breast/ovarian cancer. Health, Risk and Society, 5(3), 315–331.CrossRef

MacDonald, M., & Schreiber, R. S. (2001). Constructing and deconstructing: Grounded theory in a postmodern world. In R. S. Schreiber, & P. N. Stern (Eds.), Using Grounded Theory in Nursing (pp. 35–53). New York: Springer.

Madalinska, J. B., Beurden, M. v., Bleiker, E. M. A., Valdismarsdottir, H. B., Lubsen-Brandsma, L., Massuger, L. F., et al. (2007). Predictors of prophylactic bilateral salpingo-oophorectomy compared with gynecologic screening use in BRCA1/2 mutation carriers. Journal Of Clinical Oncology, 25(3), 301–307.PubMedCrossRef

Meho, L. I. (2006). E-mail interviewing in qualitative research: A methodological discussion. Journal of the American Society for Information Science and Technology, 57(10), 1284–1295.CrossRef

Meiser, B. (2005). Psychological impact of genetic testing for cancer susceptibility: An update of the literature. Pscho-Oncology, 14, 1060–1074.CrossRef

Mellon, S., Berry-Bobovski, L., Gold, R., Levin, N., & Tainsky, M. A. (2006). Communication and decision making about seeking inherited cancer risk information: Findings from female survivor-relative focus groups. Pscho-Oncology, 15(3), 193–208.CrossRef

Mellon, S., Gold, R., Janisse, J., Cichon, M., Tainsky, M. A., Simons, M. S., et al. (2008). Risk perception and cancer worries in families at increased risk of familial breast/ovarian cancer. Psycho-oncology, 17(8), 756–766.PubMedCrossRef

Metcalf, K., Snyder, C., Seidel, J., Hanna, D., Lynch, H. T., & Narod, S. (2005). The use of preventative measures among healthy women who carry a BRCA1 or BRCA2 mutation. Familial Cancer, 4, 97–103.CrossRef

Metcalfe, K., Foulkes, W. D., Kim-Sing, C., Ainsworth, P., Rosen, B., Armel, S., et al. (2008). Family history as a predictor of uptake of cancer preventive procedures by women with BRCA1 and BRCA2 mutation. Clinical Genetics, 73, 474–479.PubMedCrossRef

Miki, Y., Swensen, J., Shattuck-Eidens, D., Futreal, P. A., Harshman, K., Tavtigian, S., et al. (1994). A strong candidate for the breast cancer and ovarian cancer susceptibility gene BRCA1. Science, 266, 66–71.PubMedCrossRef

Newman, B. M., & Newman, P. R. (2006). Development through life: A psychosocial approach (9th ed.). Wadsworth: Thomson.

NSGCDTF, Resta, R., Biesecker, B. B., Bennett, R. L., Blum, S., Hahn, S. E., et al. (2006). A new definition of Genetic Counseling: national society of genetic counselors' task force report. Journal of Genetic Counseling, 15(2), 77–83.PubMedCrossRef

Oostrom, I. v., Meijers-Heijboer, E. J., Duivenvoorden, H. J., Brocker-Vriends, A. H. J. T., Asperen, C. J. v., Sijmons, R. H., et al. (2007a). A prospective study of the impact of genetic susceptibility testing for BRCA1/2 or HNPCC on family relationships. Psycho-Oncology, 16(4), 320–328.PubMedCrossRef

Oostrom, I. v., Meijers-Heijboer, E. J., Duivenvoorden, H. J., Brocker-Vriends, A. H. J. T., van Asperen, C., Sijmons, R. H., et al. (2007b). Family system characteristics and psychological adjustment to cancer susceptibility genetic testing: A prospective study. Clinical Genetics, 71, 35–42.PubMedCrossRef

Perry, W. G. (1970/1999). Forms of intellectual and ethical development in the college years. New York: Holt, Rinehart and Winston.

PEW. (2006). Demographics, degrees of internet access, and health [Electronic Version]. PEW Internet and American Life Project, 1–8.

PEW. (2007). Demographics of internet users [Electronic Version]. PEW Internet and American Life Project, 1–2. Retrieved 5 February 2007.

Piantanida, M., Tananis, C. A., & Grubs, R. E. (2004). Generating grounded theory of/for educational practice: the journey of three epistemorphs. International Journal of Qualitative Studies in Education, 17(3), 325–346.CrossRef

Rebbeck, T. R., Friebel, T., Lynch, H. T., Neuhausen, S., van't Veer, L., Garber, J., et al. (2004). Bilateral prophylactic mastectomy reduces breast cancer risk in BRCA1 and BRCA2 mutation carriers: The PROSE study group. Journal of Clinical Oncology, 22(6), 1055–1062.PubMedCrossRef

Ries, L. A. G., Melbert, D., Krapcho, M., Stinchcomb, D. G., Howlader, N., Horner, M. J., et al. (Eds.). (2008). SEER Cancer Statistics Review, 1975–2005. Bethesda, MD: National Cancer Institute.

Rolland, J. S. (1988). Chronic illness and the family life cycle. In B. Carter, & M. McGoldrick (Eds.), The changing family life cycle: A framework for family therapy (p. 593). New York: Gardner.

Rolland, J. S. (1990). Anticipatory loss: a family systems developmental framework. Family Process, 29(3), 229–244.PubMedCrossRef

Rolland, J. S. (1994). Families, illness, and disability: An integrative treatment model. New York: Basic Books.

Rolland, J. S. (2003). Mastering family challenges in serious illness and disability. In F. Walsh (Ed.), Normal family processes : Growing diversity and complexity (pp. 460–489, 3rd ed.). New York: Guilford.

Rolland, J. S., & Williams, J. K. (2005). Toward a biopsychosocial model for 21st-century genetics. Family Process, 44(1), 3–24.PubMedCrossRef

Schatzman, L. (1991). Dimensional analysis: Notes on an alternative approach to the grounding of theory in qualitative research. In K. R. Maines (Ed.), Social Organization and Social Processes: Essays in Honor of Anselm Strauss (pp. 303–314). New York: Aldine DeGruyter.

Schlegel, A., & Barry III, H. (1991). Adolescence: An anthropological inquiry. New York: Free.

SEER: Surveillance, E., & End Results Program. (2005). SEER stat database: Incidence- SEER 17 regs public-use, Nov. 2005 sub (2000–2003), National Cancer Institute, DCCPS, surveillance research program, cancer statistics branch [Electronic Version]. Retrieved April 2006, from http://www.seer.cancer.gov.

Skirton, H., & Eiser, C. (2003). Discovering and addressing the client's lay construct of genetic disease: An important aspect of genetic health care? Research and Theory for Nursing Practice: An International Journal, 17(4), 339–352.CrossRef

Starks, H., & Trinidad, S. B. (2007). Choose your method: A comparison of phenomenology, discourse analysis, and grounded theory. Qualitative Health Research, 17(10), 1372–1380.PubMedCrossRef

Strauss, A. L. (1987). Qualitative analysis for social scientists. New York: Cambridge University Press.

Strauss, A. L., & Corbin, J. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory (2nd ed.). Thousand Oaks, CA: Sage.

Tavtigian, S. V., & ent. (1996). The complete BRCA2 gene and mutations in chromosome 13q-linked kindreds. Nature Genetics, 12(3), 333–337.PubMedCrossRef

Triandis, H. C. (1995). Individualism and collectivism. Boulder, CO: Westview.

Werner-Lin, A. V. (2007). Danger zones: risk perceptions of young women from families with hereditary breast and ovarian cancer. Family Process, 46(3), 335–349.PubMedCrossRef

Wiener, C. (2007). Making teams work in conducting grounded theory. In A. Bryant, & K. Charmaz (Eds.), The Sage handbook of Grounded Theory (pp. 293–310). Los Angeles: Sage.

Wooster, R., Bignell, G., Lancaster, J., Swift, S., Seal, S., Mangion, J., et al. (1995). Identification of the breast cancer susceptibility gene BRCA2. Nature, 378, 789–792.PubMedCrossRef

Titel: Life Trajectories, Genetic Testing, and Risk Reduction Decisions in 18–39 Year Old Women at Risk for Hereditary Breast and Ovarian Cancer
verfasst von: Rebekah Hamilton
Janet K. Williams
Barbara J. Bowers
Kathleen Calzone
Publikationsdatum: 01.04.2009
Verlag: Springer US
Erschienen in: Journal of Genetic Counseling / Ausgabe 2/2009
Print ISSN: 1059-7700
Elektronische ISSN: 1573-3599
DOI: https://doi.org/10.1007/s10897-008-9200-1

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Life Trajectories, Genetic Testing, and Risk Reduction Decisions in 18–39 Year Old Women at Risk for Hereditary Breast and Ovarian Cancer

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Harnwegsinfektprophylaxe: Es geht auch ohne Antibiotika

Hochrisiko-Eingriffe für postoperative Übelkeit

Adjuvante Brustkrebstherapie: Doppelt hält besser

Manche Gestagene können das Risiko für Meningeome erhöhen

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