Coping with genetic risk: Living with Huntington Disease (HD)

Current Psychology

Volumn 28, Issue 4, 2009, Pages 284-301

  Etchegary, Holly ^a  

^a MEMORIAL UNIVERSITY OF NEWFOUNDLAND   (Canada)

Author keywords

Coping strategies; Genetic testing; Huntington disease (HD); Stress and coping

Indexed keywords

EID: 84893686191     PISSN: 10461310     EISSN: 19364733     Source Type: Journal    
DOI: 10.1007/s12144-009-9061-2     Document Type: Article

References (39)

1. Baum, A., Frideman, A., & Zakowski, S. (1997). Stress and genetic testing for disease risk. Health Psychology, 16(1), 8-19.
2. Bennenbroek, F., Buunk, B., van der Zee, K., & Grol, B. (2002). Social comparison and patient information: what do cancer patients want? Patient Education & Counseling, 47, 5-12.
3. Biesecker, B., & Erby, L. (2008). Adaptation to living with a genetic condition or risk: a mini-review. Clinical Genetics, 74, 401-407.
4. Broadstock, M., Michie, S., & Marteau, T. (2000). Psychological consequences of predictive genetic testing: a systematic review. European Journal of Human Genetics, 8, 731-738.
5. Chapman, E., & Smith, J. (2002). Interpretative phenomenological analysis and the new genetics. Journal of Health Psychology, 7(2), 125-130.
6. Compas, B., Connor-Smith, J., Saltzman, H., Thomsen, A., & Wadsworth, M. (2001). Coping with stress during childhood and adolescence: problems, progress and potential in theory and research. Psychological Bulletin, 127, 87-128.
7. Cox, S., & McKellin, W. (1999). 'There's this thing in our family': predictive testing and the construction of risk for Huntington disease. Sociology of Health & Illness, 21(5), 622-646.
8. Crocker, J., Major, B., & Steele, C. (1998). Social Stigma. In D. Gilbert, S. Fiske & G. Lindzey (Eds.), The handbook of social psychology (Vol. 1, pp. 504-553). New York: McGrath Hill.
9. Dawson, S., Kristjanson, L., Toye, C., & Flett, P. (2004). Living with Huntington's disease: need for supportive care. Nursing and Health Sciences, 6, 123-130.
10. Eakin, E., & Strycker, L. (2001). Awareness and barriers to use of cancer support and information resources by HMO patients with breast, prostate, or colon cancer: patient and provider perspectives. Psycho-Oncology, 10, 103-113.
11. Evers-Kiebooms, G., & Decruyenaere, M. (1998). Predictive testing for Huntington's disease: a challenge for persons at risk and for professionals. Patient Education and Counseling, 35, 15-26.
12. Evers-Kiebooms, G., Welkenhuysen, M., Claes, E., Decruyenaere, M., & Denayer, L. (2000). The psychological complexity of predictive testing for late onset neurogenetic diseases and hereditary cancers: implications for multidisciplinary counselling and for genetic education. Social Science & Medicine, 51, 831-841.
13. Festinger, L. (1954). A theory of social comparison processes. Human Relations, 7, 117-140.
14. Finlay, W. M., Dinos, S., & Lyons, E. (2001). Stigma and multiple social comparisons in people with schizophrenia. European Journal of Social Psychology, 31, 579-592.
15. Folkman, S., & Greer, S. (2000). Promoting psychological well-being in the face of serious illness: when theory, research, and practice inform each other. Psycho-Oncology, 9, 11-19.
16. Forrest Keenan, K., Miedzybrodzka, Z., van Teijlingen, E., McKee, L., & Simpson, S. (2007). Young people's experiences of growing up in a family affected by Huntington's disease. Clinical Genetics, 71, 120-129.
17. Gibbons, F., Lane, D., Gerrard, M., Reis-Bergan, M., Lautrup, C., Pexa, N., et al. (2002). Comparison level preferences after performance: is downward comparison theory still useful. Journal of Personality & Social Psychology, 83, 865-880.
18. Giddens, A. (1991). Modernity and self-identity. Stanford: Stanford University Press.
19. Gooding, H., Organista, K., Burack, J., & Bowles Biesecker, B. (2006). Genetic susceptibility testing from a stress and coping perspective. Social Science & Medicine, 62, 1880-1890.
20. 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.
21. Kenen, R., Ardern-Jones, A., & Eeles, R. (2003). Family stories and the use of heuristics: women from suspected hereditary breast and ovarian (HBOC) families. Sociology of Health & Illness, 25(7), 838-865.
22. 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(5), 335-345.
23. Khoury, M. (2003). Genetics and genomics in practice: the continuum from genetic disease to genetic information in health and disease. Genetics in Medicine, 5, 261-268.
24. Lazarus, R., & Folkman, S. (1984). Stress, appraisal and coping. New York: Springer.
25. Lowit, A., & van Teijlingen, E. (2005). Avoidance as a strategy of (not) coping: qualitative interviews with carers of Huntington's Disease patients. BMC Family Practice, 6, 38-46.
26. Mays, N., & Pope, C. (2000). Assessing quality in qualitative research. British Medical Journal, 320, 50-52.
27. Pakenham, K. I., Goodwin, V. A., & MacMillan, J. C. (2004). Adaptation to being at risk for Huntington's disease and the availability of genetic testing: application of a stress and coping model. Psychology, Health & Medicine, 9(3), 380-397.
28. Quaid, K., Sims, S., Swenson, M., Harrison, J., Moskowitz, C., Stepanov, N., et al. (2008). Living at risk: concealing risk and preserving hope in Huntington disease. Journal of Genetic Counseling, 17, 117-128.
29. Silverman, D. (2000). Doing qualitative research: A practical handbook. London: Sage.
30. Smith, J. A., Jarman, M., & Osborn, M. (1999). Doing interpretative phenomenological analysis. In M. Murray & K. Chamberlain (Eds.), Qualitative health psychology: Theories and methods (pp. 218-240). London: Sage.
31. 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.
32. Tibben, A., Frets, P., van de Kamp, J., Niermeijer, M., Vegter-van der Vlis, M., Roos, R., et al. (1993). Presymptomatic DNA-testing for Huntington disease: pretest attitudes and expectations of applicants and their partners in the Dutch program. American Journal of Medical Genetics, 48(1), 10-16.
33. Tibben, A., Duivenvoorden, H., Niermeijer, M., Vegter-van der Vlis, M., Roos, M., & Verhage, F. (1994). Psychological effects of presymptomatic DNA testing for Huntington's disease in the Dutch program. Psychosomatic Medicine, 56, 526-532.
34. Tibben, A., Timman, R., Bannink, E. C., & Duivenvoorden, H. J. (1997). Three year follow-up after presymptomatic testing for Huntington's disease in tested individuals and partners. Health Psychology, 16, 20-35.
35. Timman, R., Roos, R., Maat-Kievit, A., & Tibben, A. (2004). Adverse effects of predictive testing for Huntington disease underestimated: Long-term effects 7-10 years after the test. Health Psychology, 23 (2), 189-197.
36. Vamos, M., Hambridge, J., Edwards, M., & Conaghan, J. (2007). The impact of Huntington's disease on family life. Psychosomatics, 48(5), 400-404.
37. van't Spijker, A., & ten Kroode, H. F. J. (1997). Psychological aspects of genetic counselling: a review of the experience with Huntington's disease. Patient Education & Counseling, 32, 33-40.
38. Wilkinson, I. (2001). Anxiety in risk society. London: Routledge.
39. Wills, T. A. (1981). Downward comparison principles in social psychology. Psychological Bulletin, 90, 245-271.