Couples' Experiences of Predictive Testing and Living with the Risk or Reality of Huntington Disease: A Qualitative Study

American Journal of Medical Genetics

Volumn 126 A, Issue 2, 2004, Pages 170-182

  Richards, Fiona ^a  

^a CHILDREN S HOSPITAL AT WESTMEAD   (Australia)

Author keywords

Couples' experiences; Huntington disease; Living at risk; Predictive testing; Qualitative study

Indexed keywords

ADULT; ANGER; ARTICLE; CLINICAL ARTICLE; DECISION MAKING; EMOTION; FAMILY; FEMALE; HUMAN; HUNTINGTON CHOREA; LIFE EVENT; MALE; MARRIAGE; NEUROLOGIC DISEASE; PREDICTION; PRIORITY JOURNAL; THEORY;

EID: 1842429080     PISSN: 15524825     EISSN: None     Source Type: Journal    
DOI: 10.1002/ajmg.a.20583     Document Type: Article

References (65)

1. Adam S, Wiggins S, Whyte P, Bloch M, Shokeir M, Soltan H, Meschino W, Summers A, Suchowersky O, Welch J, Huggins M, Theilmann J, Hayden M. 1993. Five year study of prenatal testing for Huntington's disease: Demand, attitudes, and psychological assessment. J Med Genet 30:549-556.
2. Bateson G. 1972. Steps to an ecology of mind. New York: Ballantine.
3. Bateson G. 1979. Mind and nature: A necessary unity. New York: Dutton.
4. Binedell J, Soldan J. 1997. Nonparticipation in Huntington's disease predictive testing: Reasons for caution in interpreting findings. J Genet Couns 6:419-432.
5. Binedell J, Soldan J, Harper PS. 1998a. Predictive testing for Huntington's disease: I. Predictors of uptake in South Wales. Clin Genet 54:477-488.
6. Binedell J, Soldan J, Harper PS. 1998b. Predictive testing for Huntington's disease: II. Qualitative findings from a study of uptake in South Wales. Clin Genet 54:489-496.
7. Bloch M, Fahy M, Fox S, Hayden MR. 1989. Predictive testing for Huntington disease. II. Demographic lifestyle patterns, attitudes, and psychosocial assessments of first 51 test candidates. Am J Med Genet 32:217-224.
8. Bloch M, Adam S, Wiggins S, Huggins M, Hayden MR. 1992. Predictive testing for Huntington disease in Canada: The experience of those receiving an increased risk. Am J Med Genet 42:499-507.
9. Bowen M. 1978. Family Therapy in Clinical Practice. New York: Jason Aronson.
10. Codori AM, Brandt J. 1994. Psychological costs and benefits of predictive testing for Huntington's disease. Am J Med Genet 54:174-184.
11. Codori AM, Hanson R, Brandt J. 1994. Self-selection in predictive testing for Huntington's disease. Am J Med Genet 54:167-173.
12. Codori AM, Slavney PR, Young C, Miglioretti DL, Brandt J. 1997. Predictors of psychological adjustment to genetic testing for Huntington's disease. Health Psychol 16:36-50.
13. Cox S, McKellin W. 1999. 'There's this thing in our family': Predictive testing and the construction of risk for Huntington Disease. Sociol Health Illn 21:622-646.
14. Decruyenaere M, Evers-Kiebooms G, Boogaerts A, Cassiman JJ, Cloostermans T, Demyttenaere K, Dom R, Fryns JP, Van den Berghe H. 1996. Prediction of psychological functioning one year after the predictive test for Huntington's disease and impact of the test result on reproductive decision making. J Med Genet 33:737-743.
15. Decruyenaere M, Evers-Kiebooms G, Boogaerts A, Cassiman JJ, Cloostermans T, Demyttenaere K, Dom R, Fryns JP, Van den Berghe H. 1997. Non-participation in Predictive testing for Huntington's disease: Individual decision-making, personality, and avoidant behaviour in the family. Eur J Hum Genet 5:351-363.
16. Denzin N. 1989. The research act. New Jersey: Englewood Cliffs.
17. DudokdeWit A, Tibben A, Duivenvoorden H, Frets P, Zoeteweij M, Losekoot M, Haeringen A, Niermeijer M, Passchier J. 1997. Psychological distress in applicants for predictive DNA testing for autosomal dominant, heritable, late onset disorders. J Med Genet 34:382-390.
18. Evers-Kiebooms G, Decruyenaere M. 1998. Predictive testing for Huntington's disease: A challenge for persons at risk and for professionals. Patient Educ Couns 35:15-26.
19. Evers-Kiebooms G, Swerts A, Cassiman J, Van Den Berghe H. 1989. The motivation of at-risk individuals and their partners in deciding for or against predictive testing for Huntington's disease. Clin Genet 35:29-40.
20. Evers-Kiebooms G, Swerts A, van Den Berghe H. 1990. Partners of Huntington patients: Implications of the disease and opinions about predictive testing and prenatal diagnosis. Genet Couns 1:151-159.
21. Evers-Kiebooms G, Nys K, Harper P, Zoeteweij M, Durr A, Jacopini G, Yapijakis C, Simpson S. 2002. Predictive DNA-testing for Huntington's disease and reproductive decision making: A European collaborative study. Eur J Hum Genet 10:167-176.
22. Farrer LA. 1986. Suicide and attempted suicide in Huntington disease: Implications for preclinical testing of persons at risk. Am J Med Genet 24:305-311.
23. Folstein SE. 1989. Huntington's disease: A disorder of families. Baltimore: The Johns Hopkins University Press.
24. Haley J. 1976. Problem solving therapy. San Francisco: Jossey Bass.
25. Hans MB, Koeppen AH. 1980. Huntington's chorea: Its impact on the spouse. J Nerv Ment Dis 168:209-214.
26. Harper PS, editor. 1996. Huntington's disease. London: Saunders.
27. Huggins M, Bloch M, Wiggins S, Adam S, Suchowersky O, Trew M, Klimek ML, Greenberg CR, Eleff M, Thompson LP, Knight J, MacLeod P, Girard K, Theilmann J, Hedrick A, Hayden MR. 1992. Predictive testing for Huntington disease in Canada: Adverse effects and unexpected results in those receiving a decreased risk. Am J Med Genet 42:508-515.
28. Imber-Black E. 1993. Ghosts in the therapy room. Family Therapy Networker (May/June):19-29.
29. Karpel M. 1980. Family secrets: 1. Conceptual and Ethical Issues in the Relational Context; 2. Ethical and Practical Considerations in Therapeutic Management. Fam Proc 19:295-306.
30. Kessler S. 1993a. Forgotten person in the Huntington disease family. Am J Med Genet 48:145-150.
31. Kessler S. 1993b. The spouse in the Huntington disease family. Fam Syst Med 11:1-9.
32. Kessler S. 1994. Invited editorial: Predictive testing for Huntington disease: A psychologist's view. Am J Med Genet 54:161-166.
33. Kessler S, Bloch M. 1989. Social system responses to Huntington disease. Fam Proc 28:59-68.
34. Korer J, Fitzsimmons JS. 1985. The effect of Huntington's chorea on family life. Br J Social Wk 15:581-597.
35. Korer J, Fitzsimmons JS. 1987. Huntington's chorea and the young person at risk. Br J Social Wk 17:521-534.
36. Lawson K, Wiggins S, Green T, Adam S, Bloch M, Hayden MR, The Canadian Collaborative Study of Predictive Testing. 1996. Adverse psychological events occurring in the first year after predictive testing for Huntington's disease. J Med Genet 33:856-862.
37. Maat-Kievit A, Vegter-van der Vlis M, Zoeteweij M, Losekoot M, van Haeringen A, Kanhai H, Roos R. 1999. Experience in prenatal testing for Huntington's disease in The Netherlands: Procedures, results, and guidelines (1987-1997). Prenat Diagn 19:450-457.
38. Mattson B, Almqvist EW. 1991. Attitudes towards predictive testing in Huntington's disease-A deep interview study in Sweden. Fam Prac 8:23-27.
39. Minichiello V, Aroni R, Timewall E, Alexander L. 1995. In-depth interviewing: Researching people. Melbourne: Longman Cheshire.
40. Minuchin S. 1974. Families and family therapy. Cambridge, MA: Harvard University Press.
41. Murburg MM, Price LH, Jalali B. 1988. Huntington's disease: Therapy strategies. Fam Syst Med 6:290-303.
42. Quaid KA, Morris M. 1993. Reluctance to undergo predictive testing: The case of Huntington disease. Am J Med Genet 45:41-45.
43. Quaid KA, Wesson MK. 1995. Exploration of the effects of predictive testing for Huntington disease on intimate relationships. Am J Med Genet 57:46-51.
44. Richards F, Williams K. 2003. The impact on couple relationships of predictive testing for Huntington disease: A longitudinal study. Am J Med Genet.
45. Rubin HJ, Rubin IS. 1995. Qualitative interviewing: The art of hearing data. California: Sage Publications.
46. Selvini Palazzoli M, Boscolo L, Cecchin G, Prata G. 1978. Paradox and counterparadox: A new model in the therapy of the family in schizophrenic transaction. New York: Aronson.
47. Sobel SK, Cowan DB. 2000a. Impact of genetic testing for Huntington disease on the family system. Am J Med Genet 90:49-59.
48. Sobel SK, Cowan DB. 2000b. The process of family reconstruction after DNA testing for Huntington disease. J Genet Couns 9:237-251.
49. Soldan J, Street E, Gray J, Binedell J, Harper PS. 2000. Psychological model for presymptomatic test interviews: Lessons learned from Huntington disease. J Genet Couns 9:15-31.
50. Spanier G. 1976. Measuring dyadic adjustment: New scales for assessing the quality of marriages and similar dyads. J Marriage Fam 38:15-28.
51. Stern H, Harton G, Sisson M, Jones S, Fallon L, Thorsell L, Getlinger M, Black S, Schulman J. 2002. Non-disclosing preimplantation genetic diagnosis for Huntington disease. Prenat Diagn 22:503-507.
52. Taylor CA, Myers RH. 1997. Long-term Impact of Huntington disease linkage testing. Am J Med Genet 70:365-370.
53. Tibben A, Vegter van der Vlis M, Skraastad MI, Frets PG, van de Kamp JJP, Niermeijer MF, van Ommen GB, Roos RA, Rooijmans HG, Stronks D, Verhage F. 1992. DNA testing for Huntington's disease in The Netherlands: A retrospective study on psychosocial effects. Am J Med Genet 44:94-99.
54. Tibben A, Frets P, van de Kamp J, Niermeijer M, Vegter-van der Vlis M, Roos R, van Ommen GB, Duivendoorden HJ, Verhage F. 1993a. Pretest attitiudes and expectations of applicants and their partners in the Dutch program. Am J Med Genet 48:10-16.
55. Tibben A, Frets P, van de Kamp J, Niermeijer M, Vegter van der Vlis M, Roos R, Rooymans HG, van Ommen GB, Verhage F. 1993b. On attitudes and appreciation 6 months after predictive DNA testing for Huntington disease in the Dutch program. Am J Med Genet 48:103-111.
56. Tibben A, Duivenvoorden HJ, Vegter van der Vlis M, Niermeijer M, Frets PG, van de Kamp JJP, Roos R, Rooijmans HG, Verhage F. 1993c. Presymptomatic DNA testing for Huntington disease: Identifying the need for psychological intervention. Am J Med Genet 48:137-144.
57. Tibben A, Timman R, Bannink EC, Duivenvoorden HJ. 1997. Three-year follow-up after presymptomatic testing for Huntington's disease in tested individuals and partners. Health Psychol 16:20-35.
58. Tyler A. 1989. Helping children live with Huntington's disease. Special report. London: Association to Combat Huntington's Disease.
59. Van der Steenstraten IM, Tibben A, Roos R, van de Kamp JJP, Niermeijer M. 1994. Predictive testing for Huntington disease: Nonparticipants compared with participants in the Dutch program. Am J Hum Genet 55:618-625.
60. Wahlin TR, Lundin A, Backman L, Almqvist E, Haegermark A, Winblad B, Anvret M. 1997. Reactions to predictive testing in Huntington disease: Case reports of coping with a new genetic status. Am J Med Genet 73:356-365.
61. Wallerstein JS, Blakeslee S. 1996. The good marriage: How and why love lasts. London: Bantam Press.
62. Wexler NS. 1979. Genetic Russian roulette: The experience of being at risk for Huntington's disease. In: Kessler S, editor. Genetic counseling: Psychological dimensions. London: Academic Press.
63. Wexler NS. 1992. The Tiresias complex: Huntington's disease as a paradigm of testing for late-onset disorders. FASEB J 6:2820-2825.
64. Wexler A. 1995. Mapping fate: A memoir of family, risk, and genetic research. New York: Random House.
65. Williams JK, Schutte DL, Evers C, Holkup PA. 2000. Redefinition: Coping with normal results from predictive gene testing for neurodegenerative disorders. Res Nurs Health 23:260-269.