The impact of Juvenile Huntington's Disease on the family: The case of a rare childhood condition

Journal of Health Psychology

Volumn 13, Issue 1, 2008, Pages 5-16

  Brewer, Helen M ^a   Eatough, Virginia ^a   Smith, Jonathan A ^a   Stanley, Cath A ^b   Glendinning, Neil W ^b   Quarrell, Oliver W J ^b  

^a UNIVERSITY OF LONDON   (United Kingdom)

^b Huntington's Disease Association   (United Kingdom)

Author keywords

Childhood illness; Impact; Juvenile Huntington's Disease; Parents' experiences; Qualitative study

Indexed keywords

ADOLESCENT; ADULT; ANALYTIC METHOD; ARTICLE; CAREGIVER; CHILD; CHILD HEALTH; CHILD HEALTH CARE; CHILDHOOD DISEASE; CLINICAL ARTICLE; FAMILY; FEMALE; HUMAN; HUNTINGTON CHOREA; INTERPRETATIVE PHENOMENOLOGICAL ANALYSIS; JUVENILE HUNTINGTON DISEASE; MALE; MENTAL HEALTH; MOTHER; PRIORITY JOURNAL; PSYCHOLOGICAL ASPECT; QUALITATIVE ANALYSIS; SEMI STRUCTURED INTERVIEW; SOCIAL PSYCHOLOGY;

ADAPTATION, PSYCHOLOGICAL; ADOLESCENT; CAREGIVERS; FAMILY; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HUMANS; HUNTINGTON DISEASE; INTERVIEWS AS TOPIC; SOCIAL ISOLATION; SOCIAL SUPPORT;

EID: 38449116688     PISSN: 13591053     EISSN: 14617277     Source Type: Journal    
DOI: 10.1177/1359105307084307     Document Type: Article

References (33)

1. Boyd, J.R., & MacMillan, L.J. (2005). Experiences of children and adolescents living with multiple sclerosis. Journal of Neuroscience Nursing, 37 (6). 334 - 342.
2. Brackenridge, C.J. (1980). Factors influencing dementia and epilepsy in Huntington's Disease of early onset. Acta Neurologica Scandinavica, 62, 305 - 311.
3. Brewer, H., Smith, J.A., Eatough, V., Stanley, C., Glendinning, N., & Quarrell, O. (2007). Caring for a child with Juvenile Huntington's Disease: Helpful and unhelpful support. Journal of Child Health Care, 11, 40 - 52.
4. Bruyn, G.W. (1968). Huntington's chorea: Historical, clinical and lab synopsis. In P. J. Vincken & G. W. Bruyn (Eds.), Diseases in the basal ganglia: Handbook of clinical neurology (pp. 298 - 378). Amsterdam: North Holland Publishing Company.
5. Carter, B., & McGoldrick, M. (1989). The changing family life cycle: A framework for family therapy, 2 nd edn. Boston, MA, London, Sydney, & Toronto: Allyn & Bacon.
6. Cohen, D.J., Ort, S.I., Leckman, J.F., Riddle, M.A., & Hardin, M.T. (1988). Family functioning and Tourette's Syndrome. In D. J. Cohen, R. D. Bruun, & J. F. Leckman (Eds.), Tourette's Syndrome & tic disorders: Clinical understanding and treatment (pp. 179 - 196). New York, Chichester, Brisbane, Toronto, & Singapore: John Wiley & Sons.
7. Drotar, D. (1997). Relating parent and family functioning to the psychological adjustment of children with chronic health conditions. What have we learned? What do we need to know? Journal of Pediatric Psychology, 22, 149 - 165.
8. Eiser, C. (1990). Chronic childhood disease: An introduction to psychological theory and research. Cambridge: Cambridge University Press.
9. Eiser, C. (1993). Growing up with a chronic disease: The impact on children and their families. London: Jessica Kingsley Publishers.
10. Festinger, L. (1957). A theory of cognitive dissonance. Evanston, IL: Row, Peterson.
11. Gortmaker, S.L., & Sappenfield, W. (1984). Chronic childhood disorders: Prevalence and impact. Pediatric Clinics of North America, 31, 3 - 18.
12. Hanson, C.L. (2001). Quality of life in families of youths with chronic conditions. In H. M. Koot & J. L. Wallander (Eds.), Quality of life in child and adolescent illness: Concepts, methods and findings (pp. 181 - 212). East Sussex, UK: Brunner-Routledge.
13. Harper, P.S. (2002). The epidemiology of Huntington's Disease. In G. Bates, P. Harper, & L. Jones (Eds.), Huntington's Disease (3 rd edition): Oxford monographs on medical genetics (pp. 159 - 197). Oxford: Oxford University Press.
14. Hayden, M.R. (1981). Huntington's chorea. New York: Springer-Verlag.
15. Ievers, C.E., & Drotar, D. (1996). Family and parental functioning in Cystic Fibrosis. Developmental and Behavioral Pediatrics, 17, 48 - 55.
16. Kremer, B. (2002). Clinical neurology of Huntington's Disease: Diversity in unity, unity in diversity. In G. Bates, P. Harper, & L. Jones (Eds.), Huntington's Disease (3 rd edition): Oxford monographs on medical genetics (pp. 28 - 61). Oxford: Oxford University Press.
17. La Greca, A.M., & Bearman, K.J. (2000). Commentary: Children with pediatric conditions: Can peers' impressions be managed? And what about their friends? Journal of Pediatric Psychology, 25 (3). 147 - 149.
18. Lazarus, R.S., & Folkman, S. (1984). Stress, appraisal, and coping. New York: Spring.
19. Nance, M.A., Mathias-Hagen, V., Breningstall, G., Wick, M.J., & McGlennen, R.C. (1999). Analysis of a very large trinucleotide repeat in a patient with juvenile Huntington's Disease. Neurology, 1 (s2), 392 - 394.
20. Nance, M.A., & US Huntington Disease Genetic Testing Group. (1997). Genetic testing of children at risk for Huntington's Disease. Neurology, 49, 1048 - 1053.
21. Reder, P., McClure, M., & Jolley, A. (2000). Family matters: Interfaces between child and adult mental health. London: Routledge.
22. Rolland, J. (1989). Chronic illness and the family life cycle. In B. Carter & M. McGoldrick (Eds.), The changing family life cycle: A framework for family therapy (2 nd edn, pp. 433 - 454). Boston, MA, London, Sydney, & Toronto: Allyn & Bacon.
23. Rolland, J.S. (1994). Families, illness and disability: An integrative treatment model. New York: Basic Books.
24. Schuman, W.B., & La Greca, A.M. (1999). Social correlates of chronic illness. In R. T. Brown (Ed.), Cognitive aspects of chronic illness in children (pp. 289 - 311). New York: Guilford Press.
25. Seligman, M., & Darling, R.B. (1997). Ordinary families, special children: A systems approach to childhood disability, 2 nd edn. New York & London: Guildford Press.
26. Smith, J.A. (2004). Reflecting on the development of Interpretative Phenomenological Analysis and its contribution to qualitative research in psychology. Qualitative Research in Psychology, 1, 39 - 54.
27. Smith, J.A., Brewer, H., Eatough, V., Stanley, C., Glendinning, N., & Quarrell, O. (2006). The personal experience of Juvenile Huntington's Disease: An Interpretative Phenomenological Analysis of parents' accounts of the primary features of a rare genetic condition. Clinical Genetics, 69, 486 - 496.
28. Smith, J.A., & Osborn, M. (2003). Interpretative Phenomenological Analysis. In J. A. Smith (Ed.), Qualitative psychology (pp. 51 - 80). London: Sage Publications.
29. Taylor, S.E., Lichtman, R.R., & Wood, J.V. (1984). Attributions, beliefs about control, and adjustment to breast cancer. Journal of Personality and Social Psychology, 46, 489 - 502.
30. Twigg, J., & Atkin, K. (1994). Carers perceived: Policy and practice in informal care. Buckingham: Open University Press.
31. Wallander, J.L., & Varni, J.W. (1998). Effects of pediatric chronic physical disorders on child and family adjustment. Journal of Child Psychology and Psychiatry, 39, 29 - 46.
32. Williamson, R. (1999). What's 'new' about 'genetics'? Journal of Medical Ethics, 25, 75 - 76.
33. Yardley, L. (2000). Dilemmas in qualitative health research. Psychology & Health, 15, 215 - 228.