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

Volumn 15, Issue 6, 2006, Pages 477-489

  Peters, June A ^a   Hoskins, Lindsey ^b   Prindiville, Sheila ^a   Kenen, Regina ^c   Greene, Mark H ^a  

^a NATIONAL CANCER INSTITUTE   (United States)

^b UNIVERSITY OF MARYLAND   (United States)

^c UNIVERSITY OF PENNSYLVANIA   (United States)

Author keywords

Breast cancer genetics; Communications; Ecomap; Familial cancer; Family; Friends; Genetic counseling; Genetic testing; Genogram; Hereditary cancer; Kin; Pedigree; Psychological; Psychosocial; Relationships; Social; Social network

Indexed keywords

ADULT; ARTICLE; BREAST CANCER; CANCER GENETICS; CANCER PATIENT; DECISION MAKING; FAMILIAL CANCER; FEMALE; GENE MAPPING; GENETIC COUNSELING; HIGH RISK POPULATION; HUMAN; MAJOR CLINICAL STUDY; OVARY CANCER; PEDIGREE; PILOT STUDY; SOCIAL INTERACTION; SOCIAL STATUS;

BREAST NEOPLASMS; CROSS-SECTIONAL STUDIES; FEASIBILITY STUDIES; FEMALE; GENES, BRCA1; GENETIC COUNSELING; HUMANS; OVARIAN NEOPLASMS; PEDIGREE; POINT MUTATION; PSYCHOLOGY; SOCIAL BEHAVIOR; SPIRITUALITY;

EID: 33845418733     PISSN: 10597700     EISSN: 15733599     Source Type: Journal    
DOI: 10.1007/s10897-006-9042-7     Document Type: Article

References (59)

1. Bennett, R. L. (1999). The Practical Guide to the Genetic Family History. New York: Wiley-Liss.
2. Bennett, R. L., Steinhaus, K. A., Uhrich, S. B., O'Sullivan, C. K., Resta, R. G., Lochner-Doyle, D., et al. (1995). Recommendations for standardized human pedigree nomenclature. Am J Hum Genet, 56, 745-752.
3. Bowen, D. J., Patenaude, A. F., & Vernon, S. W. (2001). Psychosocial issues in cancer genetics: from the laboratory to the public. Cancer Epidemiol Biomarkers Prev, 8, 326-328.
4. Bowen, D. J., Bourcier, E., Press, N., Lewis, F. M., & Burke, W. (2004). Effects of individual and family functioning on interest in genetic testing. Commu Genet, 7, 25-32.
5. Braithwaite, D., Emery, J., Walter, F., Prevost, A. T., & Sutton, S. (2004). Psychological impact of genetic counseling for familial cancer: A systematic review and meta-analysis. J Natl Cancer Inst, 96, 122-133.
6. Broadstock, M., Michie, S., & Marteau, T. (2000). Psychological consequences of predictive genetic testing: a systematic review. Eur J Hum Genet, 8, 731-738.
7. d'Agincourt-Canning, L. (2001). Experiences of genetic risk: Disclosure and the gendering of responsibility. Bioethics, 15, 231-247.
8. Daly, M., Farmer, J., Harrop-Stein, C., Montgomery, S., Itzen, M., Costalas, J. W., et al. (1999). Exploring family relationships in cancer risk counseling using the genogram. Cancer Epidemiol Biomarkers Prev, 8, 393-398.
9. De Maria, R., Weeks, G., & Hof, L. (1999). Focused Genograms: Intergenerational Assessment of Individuals, Couples, and Families. Philadelphia: Brunner/Mazel.
10. Dunn, A., & Dawes, S. (1999). Spiritually focused genograms: Keys to uncovering spiritual resources in African American families. J Multicult Counse Dev, 27, 240-254.
11. Easton, D. F., Ford, D., & Bishop, D. T. a. t. B. C. L. C. (1995). Breast and ovarian cancer incidence in BRCA1-mutation carriers. Am J Hum Genet, 56, 265-217.
12. Egnew, T. R. (2005). The meaning of healing: Transcending suffering. Ann Fam Med, 3, 255-262.
13. Eunpu, D. L. (1997). Systematically-based psychotherapeutic techniques in genetic counseling. J Genet Counsel, 6, 1-20.
14. Ford, D., Easton, D. F., Stratton, M., et al. (1998). Genetic heterogeneity and penetrance analysis of the BRCA1 and BRCA2 genes in breast cancer families. Am J Hum Genet, 62, 676-689.
15. 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. Clin Genet, 64, 317-326.
16. Gordon, C., Riess, H., & Waldinger, R. (2005). The formulation as a collaborative conversation. Harvard Rev Psychiat, 13, 112-124.
17. Green, J., Richards, M., Murton, F., Statham, H., & Hallowell, N. (1997). Family communication and genetic counseling: The case of hereditary breast and ovarian cancer. J Genet Couns, 6, 45-60.
18. Guttmacher, A. E., Jenkins, J., & Uhlmann, W. R. (2001). Genomic medicine: Who will practice it? A call to open arms. Am J Med Genet, 106, 216-222.
19. 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. Soc Sci Med, 59, 553-565.
20. Hartman, A. (1978). Diagramatic assessment of family relationships. Soc Casework, 59, 465-476.
21. Hartmann, L. C., Degnim, A., & Schaid, D. J. (2004). Prophylactic Mastectomy for BRCA1/2 Carriers: Progress and More Questions. J Clin Oncol, 22, 981-983.
22. Hodge, D. R. (2000). Spiritual ecomaps: a new diagrammatic tool for assessing marital and family spirituality. J Marital Fam Ther, 26, 217-228.
23. Kayser, K., Sormanti, M., & Strainchamps, E. (1999). Women coping with cancer: the influence of relationship factors in psychosocial adjustment. Psychol Women Quart, 23, 725-739.
24. 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-Oncol, 13, 335-345.
25. Kenen, R., Arden-Jones, A., & Eeles, R. (2004). Healthy women from suspected hereditary breast and ovarian cancer families: the significant others in their lives. Eur J Cancer Care, 13, 169-179.
26. Kenen, R., & Peters, J. (2001). The colored, eco-genetic relationship map (CEGRM): A conceptual approach and tool for genetic counseling research. J Genet Counsel, 10, 289-309.
27. Knox, S., Catlin, L., Casper, M., & Schlosser, L. Z. (2005). Addressing religion and spirituality in psychotherapy: clients' perspectives. Psychother Res, 15, 287-303.
28. Koehly, L. M., Peterson, S. K., Watts, B. G., Kempf, K. K., Vernon, S. W., & Gritz, E. R. (2003). A Social Network Analysis of Communication about Hereditary Nonpolyposis Colorectal Cancer Genetic Testing and Family Functioning. Cancer Epidemiol Biomarkers Prev, 12, 304-313.
29. Kramer, J. L., Velazquez, I. A., Chen, B. E., Rosenberg, P. S., Struewing, J. P., & Greene, M. H. (2005). Prophylactic Oophorectomy Reduces Breast Cancer Penetrance During Prospective, Long-Term Follow-Up of BRCA1Mutation Carriers. J Clin Oncol, 23, 8629-8635.
30. Lerman, C., Narod, S., Schulman, K., Hughes, C., Gomez-Caminero, A., Bonney, G., et al. (1996). BRCA1 testing in families with hereditary breast-ovarian cancer. A prospective study of patient decision making and outcomes [see comments]. JAMA, 275, 1885-92.
31. Lugton, J. (1997). The nature of social support as experienced by women treated for breast cancer. J Adv Nurs, 25, 1184-1191.
32. McDaniel, S. H. (2005). The psychotherapy of genetics. Fam Process, 44, 25-44.
33. McDaniel, S. H., Hepworth, J., & Doherty, W. J. (1992). Medical Family Therapy: A Biopsychosocial Approach to Families with Health Problems. New York, NY: Basic Books, Harper Collins.
34. McGoldrick, M., Gerson, R., & Shellenberger, S. (1999). Genograms: Assessment and Intervention. (Second ed.) New York: Norton.
35. Olson, D., Portner, J., & Lavin, Y. (1985). Family Adaptability and Cohesion Evaluation Scale (FACES-III). St. Paul, MN: University of Minnesota.
36. Patenaude, A. F. (2005). Genetic Testing for Cancer: Psychological Approaches for Helping Patients and Families. Washington, DC: American Psychological Association.
37. Patenaude, A. F., Guttmacher, A. E., & Collins, F. S. (2002). Genetic testing and psychology - New roles, new responsibilities. Am Psychol, 57, 271-282.
38. Peters, J. A., Kenen, R., Giusti, R., Loud, J., Weissman, N., & Greene, M. H. (2004). Exploratory study of the feasibility and utility of the colored eco-genetic relationship map (CE-GRM) in women at high genetic risk of developing breast cancer. Am J Med Genet Part A, 130A, 258-264.
39. Peterson, S. K., Watts, B. G., Koehly, L. M., Vernon, S. W., Baile, W. F., Kohlmann, W. K., et al. (2003). How families communicate about HNPCC genetic testing: Findings from a qualitative study. Am J Med Genet Part C-Seminars Med Genet, 119C, 78-86.
40. Pistrang, N., Barker, C., & Rutter, C. (1997). Social support as conversation: Analysing breast cancer patients' interactions with their partners. Soc Sci Med, 45, 773-782.
41. Rebbeck, T. R., Levin, A. M., Eisen, A., Snyder, C., Watson, P., Cannon-Albright, L., et al. (1999). Breast cancer risk after bilateral prophylactic oophorectomy in BRCA1 mutation carriers. J Natl Cancer Inst, 91, 1475-1479.
42. Rebbeck, T. R., Lynch, H. T., Neuhausen, S. L., Narod, S. A., Van't Veer, L., Garber, J. E., et al. (2002). Prophylactic oophorectomy in carriers of BRCA1 or BRCA2 mutations. N Engl J Med, 346, 1616-1622.
43. Rebbeck, T. R., Friebel, T., Lynch, H. T., Neuhausen, S. L., 't Veer, L., Garber, J. E., et al. (2004). Bilateral Prophylactic Mastectomy Reduces Breast Cancer Risk in BRCA1 and BRCA2 Mutation Carriers: The PROSE Study Group. J Clin Oncol, JCO.
44. Richards, M. P. M. (1996). Families, kinship and genetics. In T. Marteau, & M. P. M. Richards (Eds.), The troubled helix: Social and psychological implications of the new human genetics (pp. 249-273). Cambridge, UK: Cambridge University Press.
45. Rippentrop, A. E., Altmaier, E. M., Chen, J. J., Found, E. M., & Keffala, V. J. (2005). The relationship between religion/ spirituality and physical health, mental health, and pain in a chronic pain population. Pain, 116, 311-321.
46. Rober, P. (2005). Family therapy as a dialogue of living persons: A perspective inspired by Bakhtin, Voloshinov, and Shotter. J Marit Fam Ther, 31, 385-397.
47. Rolland, J. S. (1989). Chronic illness and the family life cycle. In B. Carter, & M. McGoldrick (Eds.), The Changing Family Life Cycle: A Framework for Family Therapy (pp. 433-456). Boston: Allyn and Bacon.
48. Rolland, J. S. (1994). Families, Illness, and Disability: An Integrative Treatment Model. New York: Basic Books.
49. Sarason, I. G., Levine, H. M., Basham, R. B., & Sarason, B. R. (1983). Assessing Social Support - the Social Support Questionnaire. J Pers Soc Psychol, 44, 127-139.
50. Schneider, K. (2001). Counseling about Cancer: Strategies for Genetic Counseling, Second Edition (second ed.). New York: John Wiley & Sons.
51. Schneider, K. (2003). A welcome step: Let's climb to the next tier. Clin Psychol Sci Pract, 10, 316-317.
52. Stark, R. (2004). Sociology (9th ed. ed.). Belmont, CA: Wadsworth Publishing Co..
53. Stefanek, M., McDonald, P. G., & Hess, S. A. (2005). Religion, spirituality and cancer: Current status and methodological challenges. Psycho-Oncol, 14, 450-463.
54. Struewing, J. S., Hartge, P., Washolder, S., Baker, S. M., Berlin, M., McAdams, M., et al. (1997). The risk of cancer associated with specific mutations of BRCA1 and BRCA2 among Ashkenazi Jews. New England J Med, 336, 1401-1408.
55. Thompson, D., & Easton, D. F. (2002). Cancer incidence in BRCA1 mutation carriers. J Natl Cancer Inst, 94, 1358-1365.
56. Watson, M., Foster, C., Eeles, R., Eccles, D., Ashley, S., Davidson, R., et al. (2004). Psychosocial impact of breast/ovarian (BRCA 1/2) cancer-predictive genetic testing in a UK multicentre clinical cohort. Brit J Cancer, 91, 1787-1794.
57. Weil, J. (2000). Psychosocial Genetic Counseling. New York: Oxford University Press.
58. Weissman, M. M., Olfson, M., Gameroff, M. J., Feder, A., & Fuentes, M. (2001). A comparison of three scales for assessing social functioning in primary care. Am J Psychiat, 158, 460-466.
59. Wellisch, D. K., Gritz, E. R., Schain, W., Wang, H. J., & Siau, J. (1992). Psychological functioning of daughters of breast cancer patients, Part II: Characterizing the distressed daughter of the breast cancer patient. Psychosomatics, 32, 324-336.