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Published in: Journal of Genetic Counseling 5/2009

01-10-2009 | Original Research

The Effect of BRCA Gene Testing on Family Relationships: A Thematic Analysis of Qualitative Interviews

Authors: Heather A. Douglas, Rebekah J. Hamilton, Robin E. Grubs

Published in: Journal of Genetic Counseling | Issue 5/2009

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Abstract

Discovery of mutations in the breast and ovarian cancer susceptibility genes BRCA1 and BRCA2 can have emotional consequences for both the tested individual and his or her relatives. This secondary analysis study investigated how BRCA testing impacts family dynamics and relationships. For the original study, a grounded theory inquiry, participants were recruited from a hereditary breast/ovarian cancer syndrome support website and open-ended interviews were performed asking about individual and family experiences after BRCA testing. All 12 participants whose interviews were included in the secondary analysis had a BRCA mutation. For the secondary analysis, thematic analysis was conducted and revealed three main themes characterizing the effect of BRCA testing on family relationships: 1. That the first in the family to have testing or seek genetic counseling takes on a special family role that can be difficult for them; 2. That discussions in the family often change; and 3. That individuals may feel more or less connected to certain family members. These changes seemed to relate to family cancer history, relationships, coping strategies, communication patterns, and mutation status. Genetic counselors might find it useful to explore these issues in order to prepare clients before BRCA testing and to support them through shifts in family dynamics after disclosure of results.
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Literature
go back to reference Bakos, A. D., Hutson, S. P., Loud, J. T., Peters, J. A., Giusti, R. M., & Greene, M. H. (2008). BRCA mutation-negative women from hereditary breast and ovarian cancer families: a qualitative study of the BRCA-negative experience. Health Expectations, 11(3), 220–231.PubMedCrossRef Bakos, A. D., Hutson, S. P., Loud, J. T., Peters, J. A., Giusti, R. M., & Greene, M. H. (2008). BRCA mutation-negative women from hereditary breast and ovarian cancer families: a qualitative study of the BRCA-negative experience. Health Expectations, 11(3), 220–231.PubMedCrossRef
go back to reference Beeson, D. (1997). Nuance, complexity, and context: qualitative methods in genetic counseling research. Journal of Genetic Counseling, 6(1), 21–43.PubMedCrossRef Beeson, D. (1997). Nuance, complexity, and context: qualitative methods in genetic counseling research. Journal of Genetic Counseling, 6(1), 21–43.PubMedCrossRef
go back to reference Blandy, C., Chabal, F., Stoppa-Lyonnet, D., & Julian-Reynier, C. (2003). Testing participation in BRCA1/2-positive families: initiator role of index cases. Genetic Testing, 7(3), 225–233.PubMedCrossRef Blandy, C., Chabal, F., Stoppa-Lyonnet, D., & Julian-Reynier, C. (2003). Testing participation in BRCA1/2-positive families: initiator role of index cases. Genetic Testing, 7(3), 225–233.PubMedCrossRef
go back to reference Bradbury, A. R., Dignam, J. J., Ibe, C. N., Auh, S. L., Hlubocky, F. J., Cummings, S. A., et al. (2007). How often do BRCA mutation carriers tell their young children of the family’s risk for cancer? A study of parental disclosure of BRCA mutations to minors and young adults. Journal of Clinical Oncology, 25(24), 3705–3711.PubMedCrossRef Bradbury, A. R., Dignam, J. J., Ibe, C. N., Auh, S. L., Hlubocky, F. J., Cummings, S. A., et al. (2007). How often do BRCA mutation carriers tell their young children of the family’s risk for cancer? A study of parental disclosure of BRCA mutations to minors and young adults. Journal of Clinical Oncology, 25(24), 3705–3711.PubMedCrossRef
go back to reference Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101.CrossRef Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101.CrossRef
go back to reference Bredart, A., Autier, P., Audisio, R. A., & Geragthy, J. (1998). Psycho-social aspects of breast cancer susceptibility testing: a literature review. European Journal of Cancer Care, 7, 174–180.PubMedCrossRef Bredart, A., Autier, P., Audisio, R. A., & Geragthy, J. (1998). Psycho-social aspects of breast cancer susceptibility testing: a literature review. European Journal of Cancer Care, 7, 174–180.PubMedCrossRef
go back to reference Carlsson, C., & Nilbert, M. (2007). Living with hereditary non-polyposis colorectal cancer; experiences from and impact of genetic testing. Journal of Genetic Counseling, 16(6), 811–820.PubMedCrossRef Carlsson, C., & Nilbert, M. (2007). Living with hereditary non-polyposis colorectal cancer; experiences from and impact of genetic testing. Journal of Genetic Counseling, 16(6), 811–820.PubMedCrossRef
go back to reference Claes, E., Evers-Kiebooms, G., Boogaerts, A., Decruyenaere, M., Denayer, L., & Legius, E. (2003). Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients. American Journal of Medical Genetics, 116A, 11–19.PubMedCrossRef Claes, E., Evers-Kiebooms, G., Boogaerts, A., Decruyenaere, M., Denayer, L., & Legius, E. (2003). Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients. American Journal of Medical Genetics, 116A, 11–19.PubMedCrossRef
go back to reference Costalas, J. W., Itzen, M., Malick, J., Babb, J. S., Bove, B., Godwin, A. K., et al. (2003). Communication of BRCA1 and BRCA2 results to at-risk relatives: a cancer risk assessment program’s experience. American Journal of Medical Genetics. Part C, Seminars in Medical Genetics, 119C, 11–18.CrossRef Costalas, J. W., Itzen, M., Malick, J., Babb, J. S., Bove, B., Godwin, A. K., et al. (2003). Communication of BRCA1 and BRCA2 results to at-risk relatives: a cancer risk assessment program’s experience. American Journal of Medical Genetics. Part C, Seminars in Medical Genetics, 119C, 11–18.CrossRef
go back to reference d’Agincourt-Canning, L. (2001). Experiences of genetic risk: disclosure and the gendering of responsibility. Bioethics, 15(3), 231–247.PubMedCrossRef d’Agincourt-Canning, L. (2001). Experiences of genetic risk: disclosure and the gendering of responsibility. Bioethics, 15(3), 231–247.PubMedCrossRef
go back to reference 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 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
go back to reference Daly, M., Farmer, J., Harrop-Stein, C., Montgomery, S., Itzen, M., Costalas, J., et al. (1999). Exploring family relationships in cancer risk counseling using the genogram. Cancer Epidemiology, Biomarkers & Prevention, 8, 393–398. Daly, M., Farmer, J., Harrop-Stein, C., Montgomery, S., Itzen, M., Costalas, J., et al. (1999). Exploring family relationships in cancer risk counseling using the genogram. Cancer Epidemiology, Biomarkers & Prevention, 8, 393–398.
go back to reference Daly, M. B., Barsevick, A., Miller, S. M., Buckman, R., Costalas, J., Montgomery, S., et al. (2001). Communicating genetic test results to the family: a six-step, skills-building strategy. Family and Community Health, 24(3), 13–26.PubMed Daly, M. B., Barsevick, A., Miller, S. M., Buckman, R., Costalas, J., Montgomery, S., et al. (2001). Communicating genetic test results to the family: a six-step, skills-building strategy. Family and Community Health, 24(3), 13–26.PubMed
go back to reference Deatrick, J. A., Knafl, K. A., & Guyer, K. (1993). The meaning of caregiving behaviors: Inductive approaches to family theory development. In S. L. Featham, S. B. Meister, J. M. Bell & C. L. Gillis (Eds.), The nursing of families: Theory/research/education/practice, pp. 38–45. Newbury Park, CA: Sage. Deatrick, J. A., Knafl, K. A., & Guyer, K. (1993). The meaning of caregiving behaviors: Inductive approaches to family theory development. In S. L. Featham, S. B. Meister, J. M. Bell & C. L. Gillis (Eds.), The nursing of families: Theory/research/education/practice, pp. 38–45. Newbury Park, CA: Sage.
go back to reference DudokdeWit, A. C., Tibben, A., Frets, P. G., Meijers-Heijboer, E. J., Devilee, P., Klijn, J. G. M., et al. (1997). BRCA1 in the family: a case description of the psychological implications. American Journal of Medical Genetics, 71, 63–71.PubMedCrossRef DudokdeWit, A. C., Tibben, A., Frets, P. G., Meijers-Heijboer, E. J., Devilee, P., Klijn, J. G. M., et al. (1997). BRCA1 in the family: a case description of the psychological implications. American Journal of Medical Genetics, 71, 63–71.PubMedCrossRef
go back to reference Duncan, R. E., Gillam, L., Savulescu, J., Williamson, R., Rogers, J. G., & Delatycki, M. B. (2008). “You’re one of us now”: young people describe their experiences of predictive genetic testing for Huntington disease (HD) and familial adenomatous polyposis (FAP). American Journal of Medical Genetics Part C (Seminars in Medical Genetics), 148C, 47–55.CrossRef Duncan, R. E., Gillam, L., Savulescu, J., Williamson, R., Rogers, J. G., & Delatycki, M. B. (2008). “You’re one of us now”: young people describe their experiences of predictive genetic testing for Huntington disease (HD) and familial adenomatous polyposis (FAP). American Journal of Medical Genetics Part C (Seminars in Medical Genetics), 148C, 47–55.CrossRef
go back to reference Eunpu, D. L. (1997). Systemically-based psychotherapeutic techniques in genetic counseling. Journal of Genetic Counseling, 6(1), 1–20.CrossRef Eunpu, D. L. (1997). Systemically-based psychotherapeutic techniques in genetic counseling. Journal of Genetic Counseling, 6(1), 1–20.CrossRef
go back to reference Forrest, K., Simpson, S. A., Wilson, B. J., van Teijlingen, E. R., McKee, L., Haites, N., et al. (2003). To tell or not to tell: barriers and facilitators in family communication about genetic risk. Clinical Genetics, 64, 317–326.PubMedCrossRef Forrest, K., Simpson, S. A., Wilson, B. J., van Teijlingen, E. R., McKee, L., Haites, N., et al. (2003). To tell or not to tell: barriers and facilitators in family communication about genetic risk. Clinical Genetics, 64, 317–326.PubMedCrossRef
go back to reference Foster, C., Watson, M., Moynihan, C., Jones, A., & Eeles, R. (2002). Genetic testing for breast and ovarian cancer predisposition: cancer burden and responsibility. Journal of Health Psychology, 7, 469–484.CrossRef Foster, C., Watson, M., Moynihan, C., Jones, A., & Eeles, R. (2002). Genetic testing for breast and ovarian cancer predisposition: cancer burden and responsibility. Journal of Health Psychology, 7, 469–484.CrossRef
go back to reference Foster, C., Evans, D. G. R., Eeles, R., Eccles, D., Ashley, S., Brooks, L., et al. (2004). Non-uptake of predictive genetic testing for BRCA1/2 among relatives of known carriers: attributes, cancer worry, and barriers to testing in a multicenter clinical cohort. Genetic Testing, 8(1), 23–29.PubMedCrossRef Foster, C., Evans, D. G. R., Eeles, R., Eccles, D., Ashley, S., Brooks, L., et al. (2004). Non-uptake of predictive genetic testing for BRCA1/2 among relatives of known carriers: attributes, cancer worry, and barriers to testing in a multicenter clinical cohort. Genetic Testing, 8(1), 23–29.PubMedCrossRef
go back to reference Goelen, G., Rigo, A., Bonduelle, M., & De Greve, J. (1999). Moral concerns of different types of patients in clinical BRCA1/2 gene mutation testing. Journal of Clinical Oncology, 17(5), 1595–1600.PubMed Goelen, G., Rigo, A., Bonduelle, M., & De Greve, J. (1999). Moral concerns of different types of patients in clinical BRCA1/2 gene mutation testing. Journal of Clinical Oncology, 17(5), 1595–1600.PubMed
go back to reference Green, J., Richards, M., Murton, F., Statham, H., & Hallowell, N. (1997). Family communication and genetic counseling: the case of hereditary breast and ovarian cancer. Journal of Genetic Counseling, 6(1), 45–60.CrossRef Green, J., Richards, M., Murton, F., Statham, H., & Hallowell, N. (1997). Family communication and genetic counseling: the case of hereditary breast and ovarian cancer. Journal of Genetic Counseling, 6(1), 45–60.CrossRef
go back to reference Hallowell, N. (1999). Doing the right thing: genetic risk and responsibility. Sociology of Health & Illness, 21(5), 597–621.CrossRef Hallowell, N. (1999). Doing the right thing: genetic risk and responsibility. Sociology of Health & Illness, 21(5), 597–621.CrossRef
go back to reference Hallowell, N., Foster, C., Eeles, R., Arden-Jones, A., Murday, V., & Watson, M. (2003). Balancing autonomy and responsibility: the ethics of generating and disclosing genetic information. Journal of Medical Ethics, 29, 74–83.PubMedCrossRef Hallowell, N., Foster, C., Eeles, R., Arden-Jones, A., Murday, V., & Watson, M. (2003). Balancing autonomy and responsibility: the ethics of generating and disclosing genetic information. Journal of Medical Ethics, 29, 74–83.PubMedCrossRef
go back to reference Hallowell, N., Foster, C., Eeles, R., Ardern-Jones, A., & Watson, M. (2004). Accommodating risk: responses to BRCA1/2 genetic testing of women who have had cancer. Social Science & Medicine, 59, 553–565.CrossRef Hallowell, N., Foster, C., Eeles, R., Ardern-Jones, A., & Watson, M. (2004). Accommodating risk: responses to BRCA1/2 genetic testing of women who have had cancer. Social Science & Medicine, 59, 553–565.CrossRef
go back to reference Hallowell, N., Ardern-Jones, A., Eeles, R., Foster, C., & Lucassen, A. (2005a). Communication about genetic testing in families of male BRCA1/2 carriers and non-carriers: patterns, priorities and problems. Clinical Genetics, 67, 492–502.PubMedCrossRef Hallowell, N., Ardern-Jones, A., Eeles, R., Foster, C., & Lucassen, A. (2005a). Communication about genetic testing in families of male BRCA1/2 carriers and non-carriers: patterns, priorities and problems. Clinical Genetics, 67, 492–502.PubMedCrossRef
go back to reference Hallowell, N., Ardern-Jones, A., Eeles, R., Foster, C., Lucassen, A., Moynihan, C., et al. (2005b). Men’s decision-making about predictive BRCA1/2 testing: the role of family. Journal of Genetic Counseling, 14(3), 207–17.PubMedCrossRef Hallowell, N., Ardern-Jones, A., Eeles, R., Foster, C., Lucassen, A., Moynihan, C., et al. (2005b). Men’s decision-making about predictive BRCA1/2 testing: the role of family. Journal of Genetic Counseling, 14(3), 207–17.PubMedCrossRef
go back to reference 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. (2003). Experiencing predictive genetic testing in families with Huntington’s disease and hereditary breast and ovarian cancer. Unpublished Dissertation, Madison, WI.
go back to reference Hamilton, R. J., & Bowers, B. J. (2006). Internet recruitment and e-mail interviews in qualitative studies. Qualitative Health Research, 16(6), 821–835.PubMedCrossRef Hamilton, R. J., & Bowers, B. J. (2006). Internet recruitment and e-mail interviews in qualitative studies. Qualitative Health Research, 16(6), 821–835.PubMedCrossRef
go back to reference Hamilton, R. J., & Bowers, B. J. (2007). The theory of genetic vulnerability: a Roy model exemplar. Nursing Science Quarterly, 20(3), 254–265.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
go back to reference Hamilton, R. J., Bowers, B. J., & Williams, J. K. (2005). Disclosing genetic test results to family members. Journal of Nursing Scholarship, 37(1), 18–24.PubMedCrossRef Hamilton, R. J., Bowers, B. J., & Williams, J. K. (2005). Disclosing genetic test results to family members. Journal of Nursing Scholarship, 37(1), 18–24.PubMedCrossRef
go back to reference Hamilton, R. J., Williams, J. K., Bowers, B. J., & Calzone, K. (2009). Life trajectories, genetic testing, and risk reduction decisions in 18–39 year old women at risk for hereditary breast and ovarian cancer. Journal of Genetic Counseling, doi:10.1007/s10897-008-9200-1. Hamilton, R. J., Williams, J. K., Bowers, B. J., & Calzone, K. (2009). Life trajectories, genetic testing, and risk reduction decisions in 18–39 year old women at risk for hereditary breast and ovarian cancer. Journal of Genetic Counseling, doi:10.​1007/​s10897-008-9200-1.
go back to reference Hinds, P. S., Vogel, R. J., & Clarke-Steffen, L. (1997). The possibilities and pitfalls of doing secondary analysis of a qualitative data set. Qualitative Health Research, 7(3), 408–424.CrossRef Hinds, P. S., Vogel, R. J., & Clarke-Steffen, L. (1997). The possibilities and pitfalls of doing secondary analysis of a qualitative data set. Qualitative Health Research, 7(3), 408–424.CrossRef
go back to reference Hughes, C., Lerman, C., Schwartz, M., Peshkin, B. N., Wenzel, L., Narod, S., et al. (2002). All in the family: evaluation of the process and content of sisters’ communication about BRCA1 and BRCA2 genetic test results. American Journal of Medical Genetics, 107, 143–150.PubMedCrossRef Hughes, C., Lerman, C., Schwartz, M., Peshkin, B. N., Wenzel, L., Narod, S., et al. (2002). All in the family: evaluation of the process and content of sisters’ communication about BRCA1 and BRCA2 genetic test results. American Journal of Medical Genetics, 107, 143–150.PubMedCrossRef
go back to reference Kenen, R., Ardern-Jones, A., & Eeles, R. (2003a). Living with chronic risk: healthy women with a family history of breast/ovarian cancer. Health, Risk & Society, 5(3), 315–331.CrossRef Kenen, R., Ardern-Jones, A., & Eeles, R. (2003a). Living with chronic risk: healthy women with a family history of breast/ovarian cancer. Health, Risk & Society, 5(3), 315–331.CrossRef
go back to reference Kenen, R., Ardern-Jones, A., & Eeles, R. (2003b). Family stories and the use of heuristics: women from suspected hereditary breast and ovarian cancer (HBOC) families. Sociology of Health & Illness, 25(7), 838–865.CrossRef Kenen, R., Ardern-Jones, A., & Eeles, R. (2003b). Family stories and the use of heuristics: women from suspected hereditary breast and ovarian cancer (HBOC) families. Sociology of Health & Illness, 25(7), 838–865.CrossRef
go back to reference Kenen, R., Ardern-Jones, A., & Eeles, R. (2004). We are talking, but are they listening? Communication patterns in families with a history of breast/ovarian cancer (HBOC). Psycho-Oncology, 13, 335–345.PubMedCrossRef Kenen, R., Ardern-Jones, A., & Eeles, R. (2004). We are talking, but are they listening? Communication patterns in families with a history of breast/ovarian cancer (HBOC). Psycho-Oncology, 13, 335–345.PubMedCrossRef
go back to reference Kenen, R., Ardern-Jones, A., & Eeles, R. (2006). “Social separation” among women under 40 years of age diagnosed with breast cancer and carrying a BRCA1 or BRCA2 mutation. Journal of Genetic Counseling, 15(3), 150–162.CrossRef Kenen, R., Ardern-Jones, A., & Eeles, R. (2006). “Social separation” among women under 40 years of age diagnosed with breast cancer and carrying a BRCA1 or BRCA2 mutation. Journal of Genetic Counseling, 15(3), 150–162.CrossRef
go back to reference Kenen, R. H., Shapiro, P. J., Hantsoo, L., Friedman, S., & Coyne, J. C. (2007). Women with BRCA1 or BRCA2 mutations renegotiating a post-prophylactic mastectomy identity: self-image and self-disclosure. Journal of Genetic Counseling, 16, 789–798.PubMedCrossRef Kenen, R. H., Shapiro, P. J., Hantsoo, L., Friedman, S., & Coyne, J. C. (2007). Women with BRCA1 or BRCA2 mutations renegotiating a post-prophylactic mastectomy identity: self-image and self-disclosure. Journal of Genetic Counseling, 16, 789–798.PubMedCrossRef
go back to reference Knafl, K. A., Ayers, L., Gallo, A. M., Zoeller, L. H., & Breitmayer, B. J. (1995). Learning from stories: parent’s accounts of pathways to diagnosis. Pediatric Nursing, 21(5), 4122–4415. Knafl, K. A., Ayers, L., Gallo, A. M., Zoeller, L. H., & Breitmayer, B. J. (1995). Learning from stories: parent’s accounts of pathways to diagnosis. Pediatric Nursing, 21(5), 4122–4415.
go back to reference Loader, S., Shields, C. G., & Rowley, P. T. (2004). Impact of genetic testing for breast-ovarian cancer susceptibility. Genetic Testing, 8(1), 1–12.PubMedCrossRef Loader, S., Shields, C. G., & Rowley, P. T. (2004). Impact of genetic testing for breast-ovarian cancer susceptibility. Genetic Testing, 8(1), 1–12.PubMedCrossRef
go back to reference Loud, J. T., Weissman, N. E., Peters, J. A., Giusti, R. M., Wilfond, B. S., Burke, W., et al. (2006). Deliberate deceit of family members: a challenge to providers of clinical genetics services. Journal of Clinical Oncology, 24(10), 1643–1646.PubMedCrossRef Loud, J. T., Weissman, N. E., Peters, J. A., Giusti, R. M., Wilfond, B. S., Burke, W., et al. (2006). Deliberate deceit of family members: a challenge to providers of clinical genetics services. Journal of Clinical Oncology, 24(10), 1643–1646.PubMedCrossRef
go back to reference MacDonald, D. J., Sarna, L., van Servellen, G., Bastani, R., Giger, J. N., & Weitzel, J. N. (2007). Selection of family members for communication of cancer risk and barriers to this communication before and after genetic cancer risk assessment. Genetics in Medicine, 9(5), 275–282.PubMedCrossRef MacDonald, D. J., Sarna, L., van Servellen, G., Bastani, R., Giger, J. N., & Weitzel, J. N. (2007). Selection of family members for communication of cancer risk and barriers to this communication before and after genetic cancer risk assessment. Genetics in Medicine, 9(5), 275–282.PubMedCrossRef
go back to reference McGivern, G., Everett, J., Yager, G. G., Baumiller, R. C., Hafertepen, A., & Saal, H. M. (2004). Family communication about positive BRCA1 and BRCA2 genetic test results. Genetics in Medicine, 6(6), 503–509.PubMedCrossRef McGivern, G., Everett, J., Yager, G. G., Baumiller, R. C., Hafertepen, A., & Saal, H. M. (2004). Family communication about positive BRCA1 and BRCA2 genetic test results. Genetics in Medicine, 6(6), 503–509.PubMedCrossRef
go back to reference McInerney-Leo, A., Biesecker, B., Hadley, D. W., Kase, R. G., Giambarresi, T. R., Johnson, E., et al. (2005). BRCA1/2 testing in hereditary breast and ovarian cancer families II: impact on relationships. American Journal of Medical Genetics, 133A, 165–169.PubMedCrossRef McInerney-Leo, A., Biesecker, B., Hadley, D. W., Kase, R. G., Giambarresi, T. R., Johnson, E., et al. (2005). BRCA1/2 testing in hereditary breast and ovarian cancer families II: impact on relationships. American Journal of Medical Genetics, 133A, 165–169.PubMedCrossRef
go back to reference Patenaude, A. F., Dorval, M., DiGianni, L. S., Schneider, K. A., Chittenden, A., et al. (2006). Sharing BRCA1/2 test results with first-degree relatives: factors predicting who women tell. Journal of Clinical Oncology, 24(4), 700–706.PubMedCrossRef Patenaude, A. F., Dorval, M., DiGianni, L. S., Schneider, K. A., Chittenden, A., et al. (2006). Sharing BRCA1/2 test results with first-degree relatives: factors predicting who women tell. Journal of Clinical Oncology, 24(4), 700–706.PubMedCrossRef
go back to reference Peters, J. A., Hoskins, L., Prindiville, S., Kenen, R., & Greene, M. H. (2006). Evolution of the colored eco-genetic relationship map (CEGRM) for assessing social functioning in women in hereditary breast-ovarian (HBOC) families. Journal of Genetic Counseling, 15(6), 477–489.PubMedCrossRef Peters, J. A., Hoskins, L., Prindiville, S., Kenen, R., & Greene, M. H. (2006). Evolution of the colored eco-genetic relationship map (CEGRM) for assessing social functioning in women in hereditary breast-ovarian (HBOC) families. Journal of Genetic Counseling, 15(6), 477–489.PubMedCrossRef
go back to reference Phelps, C., Wood, F., Bennett, P., Brain, K., & Gray, J. (2007). Knowledge and expectations of women undergoing cancer genetic risk assessment: a qualitative analysis of free-text questionnaire comments. Journal of Genetic Counseling, 16(4), 505–14.PubMedCrossRef Phelps, C., Wood, F., Bennett, P., Brain, K., & Gray, J. (2007). Knowledge and expectations of women undergoing cancer genetic risk assessment: a qualitative analysis of free-text questionnaire comments. Journal of Genetic Counseling, 16(4), 505–14.PubMedCrossRef
go back to reference Raveis, V. H., & Pretter, S. (2005). Existential plight of adult daughters following their mother’s breast cancer diagnosis. Psycho-Oncology, 14, 49–60.PubMedCrossRef Raveis, V. H., & Pretter, S. (2005). Existential plight of adult daughters following their mother’s breast cancer diagnosis. Psycho-Oncology, 14, 49–60.PubMedCrossRef
go back to reference Richards, L., & Morse, J. M. (2007). Coding. In Readme first for a user’s guide to qualitative methods (2nd ed., pp. 133-151). Thousand Oaks, CA: Sage Publications, Inc. Richards, L., & Morse, J. M. (2007). Coding. In Readme first for a user’s guide to qualitative methods (2nd ed., pp. 133-151). Thousand Oaks, CA: Sage Publications, Inc.
go back to reference Smith, K. R., West, J. A., Croyle, R. T., & Botkin, J. R. (1999). Familial context of genetic testing for cancer susceptibility: moderating effect of siblings’ test results on psychological distress one to two weeks after BRCA1 mutation testing. Cancer Epidemiology, Biomarkers & Prevention, 8, 385–392. Smith, K. R., West, J. A., Croyle, R. T., & Botkin, J. R. (1999). Familial context of genetic testing for cancer susceptibility: moderating effect of siblings’ test results on psychological distress one to two weeks after BRCA1 mutation testing. Cancer Epidemiology, Biomarkers & Prevention, 8, 385–392.
go back to reference Sobel, S., & Cowan, D. B. (2000). Impact of genetic testing for Huntington disease on the family system. American Journal of Medical Genetics, 90, 49–59.PubMedCrossRef Sobel, S., & Cowan, D. B. (2000). Impact of genetic testing for Huntington disease on the family system. American Journal of Medical Genetics, 90, 49–59.PubMedCrossRef
go back to reference Sobel, S., & Cowan, C. B. (2003). Ambiguous loss and disenfranchised grief: the impact of DNA predictive testing on the family as a system. Family Process, 42(1), 47–57.PubMedCrossRef Sobel, S., & Cowan, C. B. (2003). Ambiguous loss and disenfranchised grief: the impact of DNA predictive testing on the family as a system. Family Process, 42(1), 47–57.PubMedCrossRef
go back to reference Speice, J., McDaniel, S. H., Rowley, P. T., & Loader, S. (2002). Family issues in a psychoeducation group for women with a BRCA mutation. Clinical Genetics, 62, 121–127.PubMedCrossRef Speice, J., McDaniel, S. H., Rowley, P. T., & Loader, S. (2002). Family issues in a psychoeducation group for women with a BRCA mutation. Clinical Genetics, 62, 121–127.PubMedCrossRef
go back to reference Stroup, A. M., & Smith, K. R. (2007). Familial effects of BRCA1 genetic mutation testing: changes in perceived family functioning. Cancer Epidemiology Biomarkers & Prevention, 16, 135–141.CrossRef Stroup, A. M., & Smith, K. R. (2007). Familial effects of BRCA1 genetic mutation testing: changes in perceived family functioning. Cancer Epidemiology Biomarkers & Prevention, 16, 135–141.CrossRef
go back to reference Tercyak, K. P., Peshkin, B. N., DeMarco, T. A., Farkas Patenaude, A., Schneider, K. A., Garber, J. E., et al. (2007). Information needs of mothers regarding communicating BRCA1/2 cancer genetic test results to their children. Genetic Testing, 11(3), 249–255.PubMedCrossRef Tercyak, K. P., Peshkin, B. N., DeMarco, T. A., Farkas Patenaude, A., Schneider, K. A., Garber, J. E., et al. (2007). Information needs of mothers regarding communicating BRCA1/2 cancer genetic test results to their children. Genetic Testing, 11(3), 249–255.PubMedCrossRef
go back to reference Thorne, S. (1994). Secondary analysis in qualitative research: issues and implications. In J. M. Morse (Ed.), Critical issues in qualitative research methods (1st ed.), pp. 263–279. Thousand Oaks, CA: Sage Publications, Inc. Thorne, S. (1994). Secondary analysis in qualitative research: issues and implications. In J. M. Morse (Ed.), Critical issues in qualitative research methods (1st ed.), pp. 263–279. Thousand Oaks, CA: Sage Publications, Inc.
go back to reference Van Dijk, S., Van Asperen, C. J., Jacobi, C. E., Vink, G. R., Tibben, A., Breuning, M. H., et al. (2004). Variants of uncertain clinical significance as a result of BRCA1/2 testing: impact of an ambiguous breast cancer risk message. Genetic Testing, 8(3), 235–239.PubMedCrossRef Van Dijk, S., Van Asperen, C. J., Jacobi, C. E., Vink, G. R., Tibben, A., Breuning, M. H., et al. (2004). Variants of uncertain clinical significance as a result of BRCA1/2 testing: impact of an ambiguous breast cancer risk message. Genetic Testing, 8(3), 235–239.PubMedCrossRef
go back to reference Van Oostrom, I., Meijers-Heijboer, H., Lodder, L. N., Duivenvoorden, H. J., van Gool, A. R., Seynaeve, C., et al. (2003). Long-term psychological impact of carrying a BRCA1/2 mutation and prophylactic surgery: a 5-year follow-up study. Journal of Clinical Oncology, 21, 3867–3874.PubMedCrossRef Van Oostrom, I., Meijers-Heijboer, H., Lodder, L. N., Duivenvoorden, H. J., van Gool, A. R., Seynaeve, C., et al. (2003). Long-term psychological impact of carrying a BRCA1/2 mutation and prophylactic surgery: a 5-year follow-up study. Journal of Clinical Oncology, 21, 3867–3874.PubMedCrossRef
go back to reference Watson, M., Foster, C., Eeles, R., Eccles, D., Ashley, S., Davidson, R., et al. (2004). Psychosocial impact of breast/ovarian (BRCA1/2) cancer-predictive genetic testing in a UK multi-centre clinical cohort. British Journal of Cancer, 91, 1787–1794.PubMedCrossRef Watson, M., Foster, C., Eeles, R., Eccles, D., Ashley, S., Davidson, R., et al. (2004). Psychosocial impact of breast/ovarian (BRCA1/2) cancer-predictive genetic testing in a UK multi-centre clinical cohort. British Journal of Cancer, 91, 1787–1794.PubMedCrossRef
go back to reference Weitzel, J. N., Lagos, V. I., Cullinane, C. A., Gambol, P. J., Culver, J. O., Blazer, K. R., et al. (2007). Limited family structure and BRCA mutation status in single cases of breast cancer. Journal of the American Medical Association, 297(23), 2587–2595.PubMedCrossRef Weitzel, J. N., Lagos, V. I., Cullinane, C. A., Gambol, P. J., Culver, J. O., Blazer, K. R., et al. (2007). Limited family structure and BRCA mutation status in single cases of breast cancer. Journal of the American Medical Association, 297(23), 2587–2595.PubMedCrossRef
go back to reference 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 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
Metadata
Title
The Effect of BRCA Gene Testing on Family Relationships: A Thematic Analysis of Qualitative Interviews
Authors
Heather A. Douglas
Rebekah J. Hamilton
Robin E. Grubs
Publication date
01-10-2009
Publisher
Springer US
Published in
Journal of Genetic Counseling / Issue 5/2009
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI
https://doi.org/10.1007/s10897-009-9232-1

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