Family Illness Narratives of Inherited Cancer Risk: Continuity and Transformation

Families, Systems and Health

Volumn 27, Issue 3, 2009, Pages 201-212

  Werner Lin, Allison ^a   Gardner, Daniel S ^a  

^a NEW YORK UNIVERSITY   (United States)

Author keywords

family therapy; genetics; genograms; medical decision making; narrative

Indexed keywords

ARTICLE; DECISION MAKING; FAMILY HEALTH; GENETIC PREDISPOSITION; GENETIC SCREENING; GENETICS; HUMAN; NEOPLASM; PSYCHOLOGICAL ASPECT; RISK ASSESSMENT;

DECISION MAKING; FAMILY HEALTH; GENETIC PREDISPOSITION TO DISEASE; GENETIC TESTING; HUMANS; NEOPLASMS; RISK ASSESSMENT;

EID: 72049104770     PISSN: 10917527     EISSN: None     Source Type: Journal    
DOI: 10.1037/a0016983     Document Type: Article

References (63)

1. Anderson H., and Goolishian H. The client is the expert: A not-knowing approach to therapy. In: Gergen K., and McNamee S. (Eds). Therapy as social construction (1992), Sage, London, England 25-39
2. Angus L.E., and McLeod J. Toward an integrative framework for understanding the role of narrative in the psychotherapy process. In: Angus L.E., and McLeod J. (Eds). The handbook of narrative and psychotherapy: Practice, theory, and research (2004), Sage, Thousand Oaks, CA 367-374
3. Antonovsky A. Health, stress, & coping (1979), Jossey-Bass, San Francisco, CA
4. Atkinson P.A., Parsons E., and Featherstone K. Professional constructions of family and kinship in medical genetics. New Genetics and Society 20 (2001) 6-24
5. Babb E.M., Swisher H.P., Whelan A.J., Mutch D.G., Herzog T.J., and Radar J.S. Qualitative evaluation of medical information processing needs of 60 women choosing ovarian cancer surveillance or prophylactic oophorectomy. Journal of Genetic Counseling 11 2 (2002) 81-96
6. Bakos A.D., Hutson S.P., Loud J.T., Peters J.A., Giusti R.M., and Greene M.H. BRCA mutation-negative women from hereditary breast and ovarian cancer families: A qualitative study of the BRCA-negative experience. Health Expectations 11 (2008) 220-231
7. Bennett R. The practical guide to the genetic family history (1999), Wiley, Indianapolis, IN
8. Bruner J. Acts of meaning (1990), Harvard University Press, Cambridge, MA
9. Bury M. Chronic illness as biographical disruption. Sociology of Health and Illness 4 (1982) 167-182
10. Bury M. Illness narratives: Fact or fiction?. Sociology of Health and Illness 23 (2001) 263-285
11. Byng-Hall J. The family script: A useful bridge between family theory and practice. Journal of Family Therapy 7 (1985) 301-305
12. Byng-Hall J. Evolving ideas about narrative: Re-editing the re-editing of family mythology. Journal of Family Therapy 20 (1998) 133-141
13. Daiute C., and Lightfoot C. Narrative analysis: Studying the development of individuals in society (2004), Sage, Thousand Oaks, CA
14. Dale B., and Altschuler J. "In sickness and in health": The development of alternative discourses in work with families with parental illness. Journal of Family Therapy 21 (1999) 267-283
15. Elit L., Esplen M.J., Butler K., and Narod S. Quality of life and psychosexual adjustment after prophylactic oophorectomy for a family history of ovarian cancer. Journal Familial Cancer 1 (2001) 149-156
16. Erblich J., Bovbjerg D.H., and Valdimarsdottir H.B. Looking forward and back: Distress among women at familial risk for breast cancer. Annals of Behavioral Medicine 22 1 (2000) 53-59
17. Eunpu D.L. Generations lost: A cancer genetics case report commentary. Journal of Genetic Counseling 6 (1997) 173-176
18. Eunpu D.L. Systemically-based psychotherapeutic techniques in genetic counseling. Journal of Genetic Counseling 6 (1997) 1-20
19. Finkler K. The kin in the gene. Current Anthropology 42 (2001) 235-264
20. Frank A. The wounded storyteller: Body, illness, and ethics (1997), University of Chicago Press, Chicago, IL
21. Frank A. Just listening: Narrative and deep illness. Family, Systems & Health 16 (1998) 197-212
22. Friedman J., and Combs G. Narrative therapy: The social construction of preferred realities (1996), Norton, New York, NY
23. Gabriel M.A. Anniversary reactions: Trauma revisited. Clinical Social Work Journal 20 (1992) 179-191
24. Garro L.C. Narrative representations of chronic illness experience: Cultural models of illness, mind, and body in stories concerning the temporomandibular joint (TMJ). Social Science and Medicine 38 (1994) 775-788
25. Garro L.C. Cultural knowledge as resource in illness narratives: Remembering through accounts of illness. In: Mattingly C., and Garro L. (Eds). Narrative and the cultural construction of illness and healing (2000), University of California Press, Berkeley 70-86
26. Garro L.C. Narrative troubling experiences. Transcultural Psychiatry 40 1 (2003) 5-43
27. Gergen M. The social construction of personal histories: Gendered lives in popular autobiographies. In: Sarbin T., and Kitsuse J. (Eds). Constructing the social: Inquiries in social construction series (1994), Sage, Thousand Oaks, CA 19-44
28. Gilligan C., Spencer R., Weinberg K., and Bertsch T. On the listening guide: A voice-centered relational method. In: Camic P.M., Rhodes J.E., and Yardley L. (Eds). Qualitative research in psychology: Expanding perspectives in methodology and design (2003), American Psychological Association Press, Washington, DC
29. Hallowell N. A qualitative study of the information needs of high-risk women undergoing prophylactic oophorectomy. Psycho-Oncology 9 (2000) 486-495
30. Hardwick P. Families' medical myths. Journal of Family Therapy 11 (1989) 3-27
31. Hoffman L. Constructing realities: An art of lenses. Family Process 29 (1990) 1-12
32. Jordens C., Little M., Paul K., and Sayers E.-J. Life disruptions and generic complexity: A social linguistic analysis of narratives of cancer. Social Science and Medicine 53 (2001) 1227-1236
33. Kenen R., Ardern-Jones A., and Eeles R. Family stories and the use of heuristics: Women from suspected hereditary breast and ovarian cancer (HBOC) families. Sociology of Health & Illness 25 (2003) 838-865
34. Kenen R., Ardern-Jones A., and Eeles R. 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 (2006) 149-162
35. Kenen R., and Peters J.A. The colored, eco-genetic relationship map (CEGRM): A conceptual approach and tool for genetic counseling research. Journal of Genetic Counseling 10 (2001) 289-309
36. Kleinman A. The illness narratives: Suffering, healing and the human condition (1988), Basic Books, New York, NY
37. Launier J. New stories for old: Narrative-based primary care in Great Britain. Families, Systems & Health 24 (2006) 336-344
38. Lieblich A., Tuval-Mashiach R., and Zilber T. Narrative research: Reading, analysis, and interpretation (1998), Sage, Thousand Oaks, CA
39. Linde C. Life stories: The creation of coherence (1993), Oxford University Press, New York, NY
40. Lindenmeyer A., Griffiths F., Green E., Thompson D., and Tsouroufli M. Family health narratives: Midlife women's concepts of vulnerability to illness. Health 12 (2008) 275-293
41. Mattingly C. Acted narratives: From storytelling to emergent dramas. In: Clandinin D.K. (Ed). Handbook of narrative inquiry: Mapping a methodology (2007), Sage, Thousand Oaks, CA 405-425
42. McDaniel S. Psychotherapy of genetics. Family Process 44 (2005) 25-44
43. McDaniel S.H., Rolland J.S., Feetham S.K., and Miller S.M. "It runs in the family": Family systems concepts and genetically linked disorders. In: Miller S.M., McDaniel S.H., Rolland J.S., and Feetham S.L. (Eds). Individuals, families, and the new era of genetics: Biopsychosocial perspectives (2006), Norton, New York, NY 118-138
44. McGoldrick M., Gerson R., and Shellenberger S. Genograms: Assessment and intervention (1999), Norton, New York, NY
45. Meiser B., Tiller K., Gleeson M.A., Andrews L., Robertson G., and Tucker K.M. Psychological impact of prophylactic oophorectomy in women at increased risk for ovarian cancer. Psycho-Oncology 9 (2000) 496-503
46. Miller S.M., Fang C.Y., Manne S.L., Engstrom P.F., and Daly M.B. Decision making about prophylactic oophorectomy among at-risk women: Psychological influences and implications. Gynecologic Oncology 75 (1999) 406-412
47. Papadopoulos L., Bor R., and Stanion P. Genograms in counselling practice: A review (Part I). Counselling Psychology Quarterly 10 (1997) 17-28
48. Patenaude A. Genetic testing for cancer: Psychological approaches for helping patients and families (2004), American Psychological Association Press, Washington, DC
49. Pennebaker J., and Seagal J.D. The health benefits of forming a narrative. Journal of Clinical Psychology 55 (1999) 1243-1254
50. Pinnegar S., and Daynes G. Locating narrative inquiry historically: Thematics in the turn to narrative. In: Clandinin D.J. (Ed). Handbook of narrative inquiry: Mapping a methodology (2007), Sage, Thousand Oaks, CA 3-34
51. Reissman C.K. Narrative analysis (1993), Sage, Newbury Park, CA
52. Rolland J.S. Living with anticipatory loss in the new era of genetics: A life cycle perspective. In: Miller S.M., McDaniel S.H., Rolland J.S., and Feetham S.L. (Eds). Individuals, families, and the new era of genetics: Biopsychosocial perspectives (2006), Norton, New York, NY 139-172
53. Rolland J.S., and Werner-Lin A. Families and illness. In: Gehlert S., and Arthur T. (Eds). Handbook of health social work (2006), Wiley, Indianapolis, IN 305-334
54. Rolland J.S., and Williams J.K. Towards a biopsychosocial model for 21st century genetics. Family Process 44 (2005) 3-24
55. Samuel J.C., and Ollila D.W. Prophylaxis and screening options: Recommendations for young women with BRCA mutations. Breast Disease 23 (2005/2006) 31-35
56. Slutzki C. Strange attractors and the transformation of narratives in family therapy. In: Hoyt M.F. (Ed). The handbook of constructive therapies: Innovative approaches from leading practitioners (1998), Jossey-Bass, San Francisco, CA 159-179
57. Sobel S., and Cowan C.B. Ambiguous loss and disenfranchised grief: The impact of DNA predictive genetic testing on the family as a system. Family Process 42 (2003) 47-57
58. Taswell H.F., and Sholtes S.K. Predictive genetic testing: A story of one family. Families, Systems, and Health 17 (1997) 111-121
59. Werner-Lin A. Danger zones: Risk perceptions of young women from families with hereditary breast and ovarian cancer. Family Process 46 (2007) 335-349
60. Werner-Lin A. Beating the biological clock: The compressed family life cycle of young women with BRCA gene alterations. Social Work in Health Care 47 4 (2008) 416-437
61. Werner-Lin A. Formal and informal support needs of young women with BRCA mutations. Journal of Psychosocial Oncology 26 4 (2008) 111-133
62. White M., and Epston D. Narrative means to therapeutic ends (1990), Norton, New York, NY
63. Zinn J.O. The biographical approach: A better way to understand behaviour in health and illness. Health, Risk and Society 7 1 (2005) 1-9