Young people's experiences of growing up in a family affected by Huntington's disease

Clinical Genetics

Volumn 71, Issue 2, 2007, Pages 120-129

  Keenan, K Forrest ^a,c   Miedzybrodzka, Z ^a   van Teijlingen, E ^a   McKee, L ^b   Simpson, S A ^a  

^a UNIVERSITY OF ABERDEEN   (United Kingdom)

^b UNIVERSITY OF ABERDEEN   (United Kingdom)

^c UNIVERSITY OF ABERDEEN   (United Kingdom)

Author keywords

At risk; Genetic services; Neurodegenerative disease; Quantitative study; Risk factors; Scotland

Indexed keywords

ADOLESCENT; ADULT; ARTICLE; ATTITUDE TO ILLNESS; CAREGIVER; CHILD GROWTH; CHILD PARENT RELATION; CONTROLLED STUDY; COPING BEHAVIOR; EMOTIONAL STRESS; EXPERIENCE; FAMILY LIFE; FEMALE; HUMAN; HUMAN RELATION; HUNTINGTON CHOREA; INTERVIEW; MALE; MEDICAL RESEARCH; NORMAL HUMAN; PATIENT CARE; PHYSICAL STRESS; PRIORITY JOURNAL; QUALITATIVE ANALYSIS; RELATIVE; RISK FACTOR; SCHOOL CHILD; SIBLING; SOCIAL BEHAVIOR; SOCIAL SUPPORT; UNITED KINGDOM;

ADAPTATION, PSYCHOLOGICAL; ADOLESCENT; ADULT; CAREGIVERS; CHILD; FAMILY; FEMALE; HUMANS; HUNTINGTON DISEASE; MALE; RISK FACTORS; SCOTLAND; SOCIAL SUPPORT;

EID: 33846672993     PISSN: 00099163     EISSN: 13990004     Source Type: Journal    
DOI: 10.1111/j.1399-0004.2006.00702.x     Document Type: Article

References (36)

1. Simpson SA, Johnston AW. The prevalence and patterns of care of Huntington's chorea in Grampian region. Br J Psychiatry 1989: 155: 799-804.
2. Scottish Huntington's Association. Annual report 2003/4. Elderslie, UK: Scottish Huntington's Association, 2004.
3. Van der Meer L, Timman R, Trijsburg W et al. Attachment in families with Huntington's disease: A paradigm in clinical genetics. Patient Educ Counsel 2006: 63: 246-254.
4. Korer J, Fitzsimmons J. The effect of Huntington's chorea on family life. Br J Soc Work 1985: 15: 581-597.
5. Tyler A, Harper PS, Davies K, Newcome RG. Family break-down and stress in Huntington's chorea. J Biosoc Sci 1983: 15: 127-138.
6. Duncan RE, Savulescu J, Gillam L, Williamson R, Delatycki MB. An international survey of predictive testing in children for adult onset conditions. Genet Med 2005: 7 (6): 390-396.
7. Duncan RE, Delatycki MB. Predictive genetic testing in young people for adult-onset conditions: Where is the evidence? Clin Genet 2006: 69: 8-16.
8. Steinberg L, Cauffman E. Maturity of judgement in adolescence: psychosocial factors in adolescent decision making. Law Hum Behav 1996: 20: 249-272.
9. Segal J, Simkins J. Helping children with ill or disabled parents: A guide for parents and professionals. London: Jessica Kingsley Publishers, 1996.
10. Power PW. The adolescent's reaction to chronic illness of a parent: Some implications for family counseling. Int J Fam Counsel 1977: 5: 70-78.
11. Easton J. Self-understanding and identity: The experience of adolescents at risk for HD. Unpublished PhD thesis, University of British Columbia, 2003.
12. Korer JR, Fitzsimmons JS. Huntington's chorea and the young person at risk. Br J Soc Work 1987: 17: 521-534.
13. Folstein SE, Franz ML, Jensen BA, Chase GA, Folstein MF. Conduct disorder and affective disorder among the offspring of patients with Huntington's disease. Psychol Med 1983: 13: 45-52.
14. Banks P, Cogan N, Riddell S. Does the covert nature of caring prohibit the development of effective services for young carers? Brit J Guid Counsel 2002: 30 (3): 229-246.
15. van Teijlingen E, Forrest K. The range of qualitative research methods in family planning and reproductive health care. J Fam Plan Reprod Health Care 2004: 30: 171-173.
16. Mason J. Qualitative researching, 2nd edn. London: Sage, 2002.
17. Glaser B, Strauss AL. The discovery of grounded theory. Chicago: Aldine, 1967.
18. Mays N, Pope C. Qualitative research: Rigour and qualitative research. BMJ 1995: 311: 109-112.
19. Atkinson R, Flint J. Accessing hidden and hard-to-reach populations: snowball research strategies. Soc Res Update 2001: 33. University of Surrey.
20. Silverman D. Doing qualitative research: A practical handbook. London: Sage, 2000.
21. Strauss AL, Corbin JM. Basics of qualitative research: Grounded theory procedures and techniques. London: Sage, 1990.
22. Lazarus RS, Averill J, Opton E. The psychology of coping. In: Coelho GV, Hamburg DA, Adams JE, eds. Coping and adaptation. New York: Basic Books, 1974: 249-315.
23. Lazarus RS, Folkman S. Stress, appraisal and coping. New York: Springer, 1984.
24. Gooding HC, Organista K, Burack J, Biesecker BB. Genetic susceptibility testing from a stress and coping perspective. Soc Sci Med 2006: 62: 1880-1890.
25. Furlong A, Cartmel F. Young people and social change: Individualization and risk in late modernity. Buckingham: Open University Press, 1987.
26. Clifton J, ed. Young carers'good practice guide. Edinburgh: The Princess Royal Trust for Carers, Scottish Executive, 2002: 6.
27. Kessler S. Invited essay on the psychological aspects of genetic counseling. V. Preselection: A family coping strategy in Huntington's disease. Am J Med Genet 1988: 31: 617-621.
28. Philip K. Mentoring: Pitfalls and potential for young people. Youth Policy 2001: 71: 1-15.
29. Cohen S, Syme SL, eds. Social support and health. Orlando, FL: Academic Press, 1985.
30. Bowlby J. Attachment. 2nd edn. London: Penguin Books, 1989.
31. Bowlby J. A secure base: Parent-child attachment and healthy human development. New York: Basic Books, 1988.
32. Brouer-DudokdeWit AC, Savenije A, Zoeteweij MW et al. A hereditary disorder in the family and the family life cycle: Huntington disease as a paradigm. Fam Proc 2002: 41 (4): 677-692.
33. Øvretveit J. Health service quality. Oxford: Blackwell Scientific Press, 1992.
34. Morrison M. Talking about adoption to your adopted child: A guide for parents by adoption. London: British Association for Fostering and Adoption, 2004.
35. Families'experiences of sharing information about donor conception. DC Network News, 23, Spring, pp. 1-7. http://www.dcnetwork.org/.
36. Forrest K, Simpson SA, Wilson BJ et al. Barriers and facilitators in family communication about genetic risk. Clin Genet 2003: 64: 317-326.