Communication and Huntington's disease: Qualitative interviews and focus groups with persons with Huntington's disease, family members, and carers

International Journal of Language and Communication Disorders

Volumn 45, Issue 3, 2010, Pages 381-393

  Hartelius, Lena ^a   Jonsson, Maria ^a   Rickeberg, Anneli ^a   Laakso, Katja ^a  

^a UNIVERSITY OF GOTHENBURG   (Sweden)

Author keywords

Dysarthria; Intelligibility; Language disorder; Neurodegenerative diseases; Social interaction

Indexed keywords

ADULT; ARTICLE; CAREGIVER; FAMILY; FEMALE; HUMAN; HUMAN RELATION; HUNTINGTON CHOREA; INFORMATION PROCESSING; INTERPERSONAL COMMUNICATION; INTERVIEW; MALE; MIDDLE AGED; PSYCHOLOGICAL ASPECT; PSYCHOLOGICAL MODEL; SOCIAL BEHAVIOR; SOCIAL SUPPORT;

ADULT; CAREGIVERS; COMMUNICATION; FAMILY; FEMALE; FOCUS GROUPS; HUMANS; HUNTINGTON DISEASE; INTERPERSONAL RELATIONS; INTERVIEWS AS TOPIC; MALE; MIDDLE AGED; MODELS, PSYCHOLOGICAL; SOCIAL BEHAVIOR; SOCIAL SUPPORT;

EID: 77951548759     PISSN: 13682822     EISSN: 14606984     Source Type: Journal    
DOI: 10.3109/13682820903105145     Document Type: Article

References (25)

1. BATES, G., HARPER, P. and JONES, L., 2002, Huntington's Disease (Oxford: Oxford University Press).
2. BOMBARD, Y., PENZINER, E., DECOLONGON, J., KLIMEK, M. L. N., CREIGHTON, S., SUCHOWERSKY, O., GUTTMAN, M., PAULSEN, J. S., BOTTORFF, J. L. and HAYDEN, M. R., 2007, Managing genetic discrimination: strategies used by individuals found to have the Huntington's disease mutation. Clinical Genetics, 71, 220-231.
3. BOYATZIS, R. E., 1998, Transforming Qualitative Information: Thematic Analysis and Code Development (Thousand Oaks, CA: Sage).
4. BURNARD, P., 1991, A method of analyzing interview transcripts in qualitative research. Nurse Education Today, 11, 461-466.
5. CHENERY, H. J., COPLAND, D. A. and MURDOCH, B. E., 2002, Complex language function and subcortical mechanisms: evidence from Huntington's disease and patients with non-thalamic subcortical lesions. International Journal of Language and Communication Disorders, 37, 459-474.
6. DAWSON, S., KRISTJANSON, L. J., TOYE, C. M. and FLETT, P., 2004, Living with Huntington's disease: Need for supportive care. Nursing and Health Sciences, 6, 123-130.
7. DUFFY, J. R., 2005, Motor Speech Disorders: Substrates, Differential Diagnosis, and Management (St Louis, MO: Elsevier Mosby).
8. FAGIUS, J., 2006, Neurologi (Stockholm: Liber).
9. FORREST KEENAN, K., MIEDZYBRODZKA, Z., VAN TEIJLINGEN, E., MCKEE, L. and SIMPSON, S. A., 2007, Young people's experiences of growing up in a family affected by Huntington's Disease. Clinical Genetics, 71, 120-129.
10. GRANEHEIM, U. H. and LUNDMAN, B., 2004, Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24, 105-112.
11. HADDAD, M. S. and CUMMINGS, J. L., 1997, Huntington's disease. Psychiatric Clinics of North America, 20, 359-364.
12. HARTELIUS, L., CARLSTEDT, A., YTTERBERG, M., LILLVIK, M. and LAAKSO, K., 2003, Speech disorders in mild and moderate Huntington's disease: results of dysarthria assessment of 19 individuals. Journal of Medical Speech-Language Pathology, 11, 1-14.
13. HENRY, J. D., CRAWFORD, J. R. and PHILLIPS, L. H., 2005, A meta-analytic review of verbal fluency deficits in Hunting-ton's disease. Neuropsychology, 19, 243-252.
14. HUNT, V. and WALKER, F. O., 1991, Learning to live at risk for Huntington's Disease. Journal of Neuroscience Nursing, 23, 179-182.
15. KIRKWOOD, S. C., SU, J. L., CONNEALLY, M. and FOROUD, T., 2001, Progression of symptoms in the early and middle stages of Huntington's disease. Archives of Neurology, 58, 273-278.
16. KVALE, S. and BRINKMANN, S., 2006, Interviews: Learning the Craft of Qualitative Research Interviewing (London: Sage).
17. LOWIT, A. and VAN TEIJLINGEN, E. R., 2005, Avoidance as a strategy of (not) coping: qualitative interviews with carers of Huntington's disease patients. BMC Family Practice, 6 (38).
18. MURRAY, L. L., 2000, Spoken language production in Huntington's and Parkinson's diseases. Journal of Speech, Language and Hearing Research, 43, 1350-1366.
19. MURRAY, L. L. and LENZ, L. P., 2001, Productive syntax abilities in Huntington's and Parkinson's diseases. Brain and Cognition, 46, 213-219.
20. MURRAY, L. L. and STOUT, J. C., 1999, Discourse comprehension in Huntington's and Parkinson's diseases. American Journal of Speech-Language Pathology, 8, 137-148.
21. NVIVO 7, 2003-2006, NVivo 7 [Computer Software] (Doncaster, VIC: QSR International Ply Ltd) (available at: http://www.qsrinternationl.com/index.htm).
22. PHILLIPS, W., SHANNON, K. M. and BARKER, R. A., 2008, The current clinical management of Huntington's disease. Movement Disorders, 23, 1491-1504.
23. ROBINS WAHLIN, T.-B., LUNDIN, A. and DEAR, K., 2007, Early cognitive deficits in Swedish gene carriers of Huntington's disease. Neuropsychology, 21, 31-44.
24. World Health Organization (WHO), 2001, International Classification of Functioning, Disability and Health - ICF (Geneva: WHO), (available at: http://www.who.int/classifications/icf/site/icftemplate.cfm) (available at: 1 July 2008).
25. YORKSTON, K. M., MILLER, R. M. and KLASNER, E. R., 2004, Huntington's disease. In K. M. Yorkston, R. M. Miller and E. A. Strand (eds), Management of Speech and Swallowing in Degenerative Diseases, 2nd edn (Austin, TX: PRO-ED), pp. 139-166.