Quality of life in couples living with Huntington's disease: The role of patients' and partners' illness perceptions

Quality of Life Research

Volumn 16, Issue 5, 2007, Pages 793-801

  Kaptein, A A ^a   Scharloo, M ^a   Helder, D I ^a   Snoei, L ^a   Van Kempen, G M J ^a   Weinman, J ^b   Van Houwelingen, J C ^a   Roos, R A C ^a  

^a LEIDEN UNIVERSITY MEDICAL CENTER   (Netherlands)

^b KING'S COLLEGE LONDON   (United Kingdom)

Author keywords

Couples; Huntington's disease; Illness perceptions; Partner QoL; Patient QoL

Indexed keywords

ADULT; ARTICLE; ATTITUDE TO HEALTH; COMPARATIVE STUDY; CONTROLLED STUDY; CORRELATION ANALYSIS; DISEASE DURATION; DISEASE SEVERITY; FEMALE; HEALTH BEHAVIOR; HUMAN; HUNTINGTON CHOREA; MAJOR CLINICAL STUDY; MALE; PRIORITY JOURNAL; QUALITY OF LIFE; SPOUSE; STATISTICAL SIGNIFICANCE; SYMPTOM;

ADAPTATION, PSYCHOLOGICAL; ATTITUDE TO HEALTH; CAREGIVERS; FEMALE; HUMANS; HUNTINGTON DISEASE; MALE; MIDDLE AGED; NETHERLANDS; PERCEPTION; PILOT PROJECTS; PSYCHOMETRICS; QUALITY OF LIFE; QUESTIONNAIRES; SICKNESS IMPACT PROFILE; SOCIAL SUPPORT; SPOUSES;

EID: 34247503294     PISSN: 09629343     EISSN: None     Source Type: Journal    
DOI: 10.1007/s11136-007-9194-4     Document Type: Article

References (45)

1. Martire, L. M., Lustig, A. P., Schulz, R., Miller, G. E., Helgeson, V. S. (2004). Is it beneficial to involve a family member? A meta-analysis of psychosocial interventions for chronic illness. Health Psychology, 23, 599-611.
2. Manne, S. L., Zautra, A. J. (1989). Spouse criticism and support: Their association with coping and psychological adjustment among women with rheumatoid arthritis. Journal of Personality and Social Psychology, 56, 608-617.
3. Manne, S. L., Zautra, A. J. (1990). Couples coping with chronic illness: Women with rheumatoid arthritis and their healthy husbands. Journal of Behavioral Medicine, 13, 327-342.
4. Manne, S., Glassman, M. (2000). Perceived control, coping efficacy, and avoidance coping as mediators between spouses' unsupportive behaviors and cancer patients' psychological distress. Health Psychology, 19, 155-164.
5. Manne, S. L., Ostroff, J., Winkel, G., Grana, G., Fox, K. (2005). Partner unsupportive responses, avoidant coping, and distress among women with early stage breast cancer: Patient and partner perspectives. Health Psychology, 24, 635-641.
6. Norton, T. R., Manne, S. L., Rubin, S., Hernandez, E., Carlson, J., Bergman, C., Rosenblum, N. (2005). Ovarian cancer patients' psychological distress: The role of physical impairment, perceived unsupportive family and friend behaviors, perceived control, and self-esteem. Health Psychology, 24, 143-152.
7. Northouse, L. L., Mood, D., Templin, T., Mellon, S., George, T. (2000). Couples' patterns of adjustment to colon cancer. Social Science & Medicine, 50, 271-284.
8. Goldstein, L. H., Atkins, L., Landau, S., Brown, R., Leigh, P. N. (2006). Predictors of psychological distress in carers of people with amyotrophic lateral sclerosis: A longitudinal study. Psychological Medicine, 36, 865-875.
9. Ory, M. G., Hoffman, R. R. III, Yee, J. L., Tennstedt, S., Schulz, R. (1999). Prevalence and impact of caregiving: A detailed comparison between dementia and nondementia caregivers. Gerontologist, 39, 177-185.
10. Thommessen, B., Aarsland, D., Braekhus, A., Oksengaard, A. R., Engedal, K., Laake, K. (2002). The psychosocial burden on spouses of the elderly with stroke, dementia and Parkinson's disease. International Journal of Geriatric Psychiatry, 17, 78-84.
11. Riemsma, R. P., Taal, E., Rasker, J. J. (2000). Perceptions about perceived functional disabilities and pain of people with rheumatoid arthritis: Differences between patients and their spouses and correlates with well-being. Arthritis Care Res, 13, 255-261.
12. Leventhal, H., Nerenz, D. R., Steele, D. J. (1984). Illness representations and coping with health threats. In: A. Baum, S. E. Taylor & J. E. Singer (Eds.), Handbook of Psychology and Health (Vol. IV, pp. 219-252). Hillsdale, NJ: Erlbaum.
13. Fortune, D. G., Richards, H. L., Main, C. J., Griffiths, C. E. M. (2000). Pathological worrying, illness perceptions and disease severity in patients with psoriasis. British Journal of Health Psychology, 5, 71-82.
14. Hagger, M. S., Orbell, S. (2003). A meta-analytic review of the common-sense model of illness representations. Psychology & Health, 18, 141-184.
15. Heijmans, M., De Ridder, D., Bensing, J. (1999). Dissimilarity in patients' and spouses' representations of chronic illness. Explorations of relations to patient adaptation. Psychology & Health, 14, 451-466.
16. Figueiras, M. J., Weinman, J. (2003). Do similar patient and spouse perceptions of myocardial infarction predict recovery? Psychology & Health, 18, 201-216.
17. Barrowclough, C., Lobban, F. (2001). An investigation of models of illness in carers of schizophrenia patients using the Illness Perception Questionnaire. British Journal of Clinical Psychology, 40, 371-385.
18. Fortune, D. G., Smith, J. V., Garvey, K. (2005). Perceptions of psychosis, coping, appraisals, and psychological distress in the relatives of patients with schizophrenia: An exploration using self-regulation theory. British Journal of Clinical Psychology, 44, 319-331.
19. Conneally, P. M. (1984). Huntington disease: Genetics and epidemiology. American Journal of Human Genetics, 36, 506-526.
20. Roos, R. A., Hermans, J., Vegter-van der Vlis, M., van Ommen Bruyn, G. W. (1993). Duration of illness in Huntington's disease is not related to age at onset. Journal of Neurology Neurosurgery and Psychiatry, 56, 98-100.
21. Hans, M. B., Koeppen, A. H. (1980). Huntington's chorea. Its impact on the spouse. The Journal Nervous and Mental Disease, 168, 209-214.
22. Jarka M., Brosig B., Richter H. E. Psychosoziale Probleme bei Huntingtonscher Chorea: Teil 2. Ergebnisse und Erfahrungen aus einer fünfjahrigen Projekt. Psychiatrische Praxis 196; 23, 121-125.
23. Korer, J., Fitzsimmons, J. S. (1985). The effect of Huntington's Chorea on family life. British Journal of Social Work, 15, 581-597.
24. Tyler, A. (1991). Social and psychological aspects of Huntington's Disease. In: Harper P (Ed.) Huntington Disease (pp. 179-203). London: WS Saunders.
25. Tyler, A., Harper, P. S., Davies, K., Newcome, R. G. (1983). Family break-down and stress in Huntington's chorea. Journal of Biosocial Science, 15, 127-138.
26. Anderson, K. E., Marshall, F. J. (2005). Behavioral symptoms associated with Huntington's disease. Advances in Neurology, 96, 197-208.
27. Helder, D. I., Kaptein, A. A., van Kempen, G. M., van Houwelingen, J. C., Roos, R. A. (2001). Impact of Huntington's disease on quality of life. Movement Disorders, 16, 325-330.
28. Kaptein, A. A., Helder, D. I., Scharloo, M., van Kempen, G. M. J., Weinman, J., van Houwelingen, J. C., Roos, R. A. C. (2006). Illness perceptions and coping explain well-being in patients with Huntington's disease. Psychology & Health, 21, 431-446.
29. Aubeeluck, A., Buchanan, H. (2006). Capturing the Huntington's disease spousal carer experience. Dementia, 5, 95-116.
30. Leimkühler, A. M. (1987). "Selbsthilfepotential der Familie" als Überforderung des Ehepartners: Bericht über eine Angehörigengruppe von Chorea-Huntington Patienten. Psychiatrische Praxis, 14, 78-83.
31. Stern, R., Eldridge, R. (1975). Attitudes of patients and their relatives to Huntington's disease. Journal of Medical Genetics, 12, 217-223.
32. Huntington Study Group (1996). Unified Huntington's Disease Rating Scale: Reliability and consistency. Movement Disorders, 11, 136-142.
33. Folstein, M. F., Folstein, S. E., McHugh, P. R. (1975). "Minimental state". A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189-198.
34. Weinman, J., Petrie, K. J., Moss-Morris, R., Horne, R. (1996). The Illness Perception Questionnaire: a new method for assessing the cognitive representation of illness. Psychology & Health, 11, 431-445.
35. Helder, D. I., Kaptein, A. A., Van Kempen, G. M., Weinman, J., Van Houwelingen, J. C., Roos, R. A. (2002). Living with Huntington's disease: Illness perceptions, coping mechanisms, and spouses' quality of life. International Journal of Behavioral Medicine, 9, 37-52.
36. Moss-Morris, R., Weinman, J., Petrie, K. J., Horne, R., Cameron, L. D., Buick, D. (2002). The revised Illness Perception Questionnaire (IPQ-R). Psychology & Health, 17, 1-16.
37. Ware, J. E. Jr, Sherbourne, C. D. (1992). The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Medical Care, 30, 473-483.
38. Achat, H., Kawachi, I., Spiro, A., DeMolles, D. A., Sparrow, D. (2000). Optimism and depression as predictors of physical and mental health functioning: The normative aging study. Annals of Behavioral Medicine, 22, 127-130.
39. Brissette, I., Scheier, M. F., Carver, C. S. (2002). The role of optimism in social network development, coping, and psychological adjustment during a life transition. Journal of Personality and Social Psychology, 82, 102-111.
40. Siesling, S., Zwinderman, A. H., van Vught, J. P. P., Kieburtz, K., Roos, R. A. C. (1997). A shortened version of the motor section of the Unified Huntington's Disease Rating Scale. Movement Disorders, 12, 229-234.
41. Brouwer-DudokdeWit, A. C., Savenije, A., Zoeteweij, M. W., Maat-Kievit, A., Tibben, A. (2002). A hereditary disorder in the family life cycle: Huntington diseae as a paradigm. Family Process, 41, 677-692.
42. van der Meer, L., Timman, R., Trijsburg, W., Duisterhof, M., Erdman, R., van Elderen, T., Tibben, A. (2006). Attachment in families with Huntington's disease: A paradigm in clinical genetics. Patient Education and Counseling, 63, 246-254.
43. van Oostrom, I., Meijers-Heijboer, H., Duivenvoorden, H. J., Bröcker-Vriends, A. H. J. T., van Asperen, C. J., Sijmons, R. H., Seynaeve, C., van Gool, A. R., Klijn, J. G. M., Tibben, A. (2007). Comparison of individuals opting for BRCA1/2 or HNPCC genetic susceptibility testing with regard to coping, illness perceptions, illness experiences, family system characteristics and hereditary cancer distress. Patient Education and Counseling, 65, 58-68.
44. Hodgson, J. H., Garcia, K., Tyndall, L. (2004). Parkinson's disease and the couple relationship: A qualitative analysis. Families, System & Health, 22, 101-118.
45. Graff, M. J. L., Vernooij-Dassen, M. J. M., Thijssen, M., Dekker, J., Hoefnagels, W. H. L., Olde Rikkert, M. (2006). Community based occupational therapy for patients with dementia and their care givers: Randomised controlled trial. British Medical Journal, 333, 1196-1199.