Skip to main content
SpringerLink
Log in

Couples’ Attributions for Work Function Changes in Prodromal Huntington Disease

  • Original Research
  • Published:
Journal of Genetic Counseling

Abstract

People who have tested positive for the expanded Huntington disease (HD) gene who are not yet diagnosed (pre-HD) and their companions report subtle changes in ability of people with pre-HD to do their jobs. However, it is not known whether they attribute these changes to HD. Semi-structured telephone interviews were analyzed from seven persons with pre-HD at different estimated points from diagnosis and six companions. Data were analyzed using qualitative analysis methods. Participants made attributions related to health, work, and temperament. Only one participant attributed a change to HD. The process of forming attributions was demonstrated through symptom monitoring and comparison of participants with pre-HD to others with and without HD. Participants also expressed uncertainty regarding how to make attributions. Attributions influence coping procedures, including whether to seek and accept medical treatment. In persons with prodromal HD the relationship between attributions and use of coping strategies for symptoms that interfere with job functioning is unknown.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  • Adam, O., & Jankovic, J. (2008). Symptomatic treatment of Huntington disease. Neurotherapeutics, 5(2), 181–197.

    Article  PubMed  CAS  Google Scholar 

  • Aujoulat, I., Marcolongo, R., Bonadiman, L., & Deccache, A. (2008). Reconsidering patient empowerment in chronic illness: a critique of models of self-efficacy and bodily control. Social Science & Medicine, 66(5), 1228–1239.

    Article  Google Scholar 

  • Baumann, L. J., Zimmerman, R. S., & Leventhal, H. (1989). An experiment in common sense: education at blood pressure screening. Patient Education and Counseling, 14(1), 53–67.

    Article  PubMed  CAS  Google Scholar 

  • Bloch, M., Adam, S., Wiggins, S., Huggins, M., & Hayden, M. R. (1992). Predictive testing for Huntington disease in Canada: the experience of those receiving an increased risk. American Journal of Medical Genetics, 42(4), 499–507.

    Article  PubMed  CAS  Google Scholar 

  • Broadbent, E., Ellis, C. J., Thomas, J., Gamble, G., & Petrie, K. J. (2009). Further development of an illness perception intervention for myocardial infarction patients: a randomized controlled trial. Journal of Psychosomatic Research, 67(1), 17–23.

    Article  PubMed  Google Scholar 

  • Buchman, A., Boyle, P., Wilson, R., Fleischman, D., Leurgans, S., & Bennett, D. (2009). Association between late-life social activity and motor decline in older adults. Archives of Internal Medicine, 169(12), 1139–1146.

    Article  PubMed  Google Scholar 

  • Caserta, M., Bannon, Y., Fernandez, F., Giunta, B., Schoenberg, M., & Tan, J. (2009). Normal brain aging: clinical, immunological, neuropsychological, and neuroimaging features. International Review of Neurobiology, 84, 1–19.

    Article  PubMed  Google Scholar 

  • Chen, S. L., Tsai, J. C., & Lee, W. L. (2009). The impact of illness perception on adherence to therapeutic regimens of patients with hypertension in Taiwan. Journal of Clinical Nursing, 18(15), 2234–2244.

    Article  PubMed  Google Scholar 

  • Davis, L. L. (2001). Assessing functional ability in persons with dementia: using family caregivers as informants. Journal of Neuroscience Nursing, 33(4), 194–195. 200–202.

    PubMed  CAS  Google Scholar 

  • Decruyenaere, M., Evers-Kiebooms, G., Cloostermans, T., Boogaerts, A., Demyttenaere, K., Dom, R., et al. (2003). Psychological distress in the 5-year period after predictive testing for Huntington’s disease. European Journal of Human Genetics: EJHG, 11(1), 30–38.

    Article  PubMed  Google Scholar 

  • de Ridder, D. T., Theunissen, N. C., & van Dulmen, S. M. (2007). Does training general practitioners to elicit patients’ illness representations and action plans influence their communication as a whole? Patient Education and Counseling, 66(3), 327–336.

    Article  PubMed  Google Scholar 

  • Duncan, R. E., Gillam, L., Savulescu, J., Williamson, R., Rogers, J. G., & Delatycki, M. B. (2008). “You’re one of us now”: Young people describe their experiences of predictive genetic testing for Huntington disease (HD) and familial adenomatous polyposis (FAP). American Journal of Medical Genetics.Part C, Seminars in Medical Genetics, 148C(1), 47–55.

    Article  PubMed  Google Scholar 

  • Frostholm, L., Fink, P., Oernboel, E., Christensen, K., Toft, T., Olesen, F., et al. (2005). The uncertain consultation and patient satisfaction: the impact of patients’ illness perceptions and a randomized controlled trial on the training of physicians’ communication skills. Psychosomatic Medicine, 67(6), 897–905.

    Article  PubMed  Google Scholar 

  • Godoy-Izquierdo, D., Lopez-Chicheri, I., Lopez-Torrecillas, F., Velez, M., & Godoy, J. F. (2007). Contents of lay illness models dimensions for physical and mental diseases and implications for health professionals. Patient Education and Counseling, 67(1–2), 196–213.

    Article  PubMed  Google Scholar 

  • Grimbergen, Y. A. M., & Roos, R. A. C. (2003). Therapeutic options for Huntington’s disease. Current Opinion in Investigational Drugs, 4(1), 51–54.

    PubMed  CAS  Google Scholar 

  • Hannan, A. (2005). Novel therapeutic targets for Huntington’s disease. Expert Opinion on Therapeutic Targets, 9(4), 639–650.

    Article  PubMed  CAS  Google Scholar 

  • 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(2), 325–330.

    Article  PubMed  CAS  Google Scholar 

  • Helder, D. I., Kaptein, A. A., Van Kempen, G. M., Weinman, J., Van Houwelingen, H. C., & Roos, R. A. (2002). Living with Huntington’s disease: Illness perceptions, coping mechanisms, and patients’ well-being. British Journal of Health Psychology, 7(Part 4), 449–462.

    Article  PubMed  Google Scholar 

  • Hogarth, P. (2003). Huntington’s disease: a decade beyond gene discovery. Current Neurology and Neuroscience Reports, 3(4), 279–284.

    Article  PubMed  Google Scholar 

  • Hoth, K. F., Paulsen, J. S., Moser, D. J., Tranel, D., Clark, L. A., & Bechara, A. (2007). Patients with Huntington’s disease have impaired awareness of cognitive, emotional, and functional abilities. Journal of Clinical and Experimental Neuropsychology, 29(4), 365–376.

    Article  PubMed  Google Scholar 

  • Jurgens, C. Y., Hoke, L., Byrnes, J., & Riegel, B. (2009). Why do elders delay responding to heart failure symptoms? Nursing Research, 58(4), 274–282.

    Article  PubMed  Google Scholar 

  • Kaptein, A. A., Scharloo, M., Helder, D. I., Snoei, L., van Kempen, G. M., Weinman, J., et al. (2007). Quality of life in couples living with Huntington’s disease: the role of patients’ and partners’ illness perceptions. Quality of Life Research, 16(5), 793–801. doi:10.1007/s11136-007-9194-4.

    Article  PubMed  CAS  Google Scholar 

  • Kloeppel, S., Chu, C., Tan, G. C., Draganski, B., Johnson, H., Paulsen, J. S., et al. (2009). Automatic detection of preclinical neurodegeneration: presymptomatic Huntington disease. Neurology, 72(5), 426–431.

    Article  Google Scholar 

  • Langbehn, D. R., Brinkman, R. R., Falush, D., Paulsen, J. S., Hayden, M. R., & International Huntington’s Disease Collaborative Group. (2004). A new model for prediction of the age of onset and penetrance for Huntington’s disease based on CAG length. Clinical Genetics, 65(4), 267–277.

    Article  PubMed  CAS  Google Scholar 

  • Lawson, V., & Harvey, J. (2009). The importance of health belief models in determining self-care behaviour in diabetes. Diabetic Medicine, 26(1), 5–13.

    Article  PubMed  Google Scholar 

  • Lerdal, A., Celius, E. G., & Moum, T. (2009). Perceptions of illness and its development in patients with multiple sclerosis: a prospective cohort study. Journal of Advanced Nursing, 65(1), 184–192.

    Article  PubMed  Google Scholar 

  • Leventhal, E. A. (1984). Aging and the perception of illness. Research on Aging, 6(1), 119–135.

    Article  PubMed  CAS  Google Scholar 

  • Leventhal, H., Meyer, D., & Nerenz, D. (1980). The common sense representation of illness danger. In S. Rachman (Ed.), Contributions to medical psychology, vol. 2 (pp. 7–30). New York: Pergamon.

    Google Scholar 

  • Leventhal, H., Nerenz, D. R., & Steele, D. J. (1984). Illness representations and coping with health threats. In A. Baum & J. Singer (Eds.), A handbook of psychology and health, vol. 4 (pp. 219–252). Hillsdale: Erlbaum.

    Google Scholar 

  • Leventhal, H., Leventhal, E. A., & Nguyen, T. V. (1985). Reactions of families to illness: theoretical models and perspectives. In D. C. Turk & R. D. Kerns (Eds.), Health, illness and families: A life-span perspective (pp. 108–145). New York: Wiley.

    Google Scholar 

  • Leventhal, E. A., Leventhal, H., Schaefer, P., & Easterling, D. (1993). Conservation of energy, uncertainty reduction, and swift utilization of medical care among the elderly. Journal of Gerontology, 48(2), 78–86. doi:10.1093/geronj/48.2.P78.

    Google Scholar 

  • Leventhal, E. A., Easterling, D., Leventhal, H., & Cameron, L. (1995). Conservation of energy, uncertainty reduction, and swift utilization of medical care among the elderly: study II. Medical Care, 33(10), 988–1000.

    Article  PubMed  CAS  Google Scholar 

  • Leventhal, H., Leventhal, E. A., & Contrada, R. J. (1998). Self-regulation, health, and behavior: a perceptual-cognitive approach. Psychology & Health, 13(4), 717–733. doi:10.1080/08870449808407425.

    Article  Google Scholar 

  • Leventhal, H., Kelly, K., & Leventhal, E. A. (1999). Population risk, actual risk, perceived risk, and cancer control: a discussion. Journal of the National Cancer Institute. Monographs, 1999(25), 81–85.

    Google Scholar 

  • McCabe, M. P., Roberts, C., & Firth, L. (2008). Work and recreational changes among people with neurological illness and their caregivers. Disability and Rehabilitation, 30(8), 600–610.

    Article  PubMed  Google Scholar 

  • Morse, J. M. (1994). Designing funded qualitative research. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of qualitative research (pp. 220–235). Thousand Oaks: Sage.

    Google Scholar 

  • Morse, J. M., & Niehaus, L. (2009). Mixed method design. Principles and procedures. Walnut Creek: Left Coast Press.

    Google Scholar 

  • Myers, R. H. (2004). Huntington’s disease genetics. NeuroRx: The Journal of the American Society for Experimental NeuroTherapeutics, 1(2), 255–262.

    Google Scholar 

  • OMIM. (2009). Huntington disease. Retrieved September 2, 2009, from http://www.ncbi.nlm.nih.gov/omim/.

  • Paulsen, J. S. (2009). Functional imaging in Huntington’s disease. Experimental Neurology, 216(2), 272–277.

    Article  PubMed  Google Scholar 

  • Paulsen, J. S. (2010). Early detection of Huntington’s disease. Future Neurology, 5(1), 85–104.

    Article  Google Scholar 

  • Paulsen, J. S., Hayden, M., Stout, J. C., Langbehn, D. R., Aylward, E., Ross, C. A., et al. (2006). Preparing for preventive clinical trials: the predict-HD study. Archives of Neurology, 63(6), 883–890.

    Article  PubMed  Google Scholar 

  • Paulsen, J. S., Langbehn, D. R., Stout, J. C., Aylward, E., Ross, C. A., Nance, M., et al. (2008). Detection of Huntington’s disease decades before diagnosis: the predict-HD study. Journal of Neurology, Neurosurgery and Psychiatry, 79(8), 874–880.

    Article  CAS  Google Scholar 

  • Paulsen, J., Wang, C., Duff, K., Barker, R., Nance, M., Beglinger, L., et al. (2009). Challenges assessing functional outcomes in early Huntington’s disease [Abstract]. Clinical Genetics, 76(S1), A20.

    Google Scholar 

  • Penziner, E., Williams, J. K., Erwin, C., Bombard, Y., Wallis, A., Beglinger, L. J., et al. (2008). Perceptions of discrimination among persons who have undergone predictive testing for Huntington’s disease. American Journal of Medical Genetics. Part B, Neuropsychiatric Genetics, 147(3), 320–325. doi:10.1002/ajmg.b.30600.

    Article  Google Scholar 

  • Petrie, K., Cameron, L., Ellis, C., Buick, D., & Weinman, J. (2002). Changing illness perceptions after myocardial infarction: an early intervention randomized controlled trial. Psychosomatic Medicine, 64(4), 580–586.

    PubMed  Google Scholar 

  • QSR International. (2000). NVivo. Victoria: Doncaster.

    Google Scholar 

  • Quaid, K. A., & Wesson, M. K. (1995). Exploration of the effects of predictive testing for huntington disease on intimate relationships. American Journal of Medical Genetics, 57(1), 46–51.

    Article  PubMed  CAS  Google Scholar 

  • Ranen, N. G., Lipsey, J. R., Treisman, G., & Ross, C. A. (1996). Sertraline in the treatment of severe aggressiveness in Huntington’s disease. Journal of Neuropsychiatry and Clinical Neurosciences, 8(3), 338–340.

    PubMed  CAS  Google Scholar 

  • Richards, F. (2004). Couples’ experiences of predictive testing and living with the risk or reality of Huntington disease: a qualitative study. American Journal of Medical Genetics.Part A, 126A(2), 170–182.

    Article  PubMed  Google Scholar 

  • Sandelowski, M. (1995). Focus on qualitative methods. sample size in qualitative research. Research in Nursing Health, 18(2), 179–183.

    Article  PubMed  CAS  Google Scholar 

  • Sandelowski, M. (2000). Focus on research methods. whatever happened to qualitative description? Research in Nursing Health, 23(4), 334–340.

    Article  PubMed  CAS  Google Scholar 

  • The Huntington’s Disease Collaborative Research Group. (1993). A novel gene containing a trinucleotide repeat that is expanded and unstable on Huntington’s disease chromosomes. Cell, 72(6), 971–983.

    Article  Google Scholar 

  • Walker, F. O., & Raymond, L. A. (2004). Targeting energy metabolism in Huntington’s disease. Lancet, 364(9431), 312–313.

    Article  PubMed  Google Scholar 

  • Warr, P. (2008). Work values: some demographic and cultural correlates. Journal of Occupational and Organizational Psychology, 81(4), 751–775.

    Article  Google Scholar 

  • Williams, J. K., Hamilton, R., Nehl, C., McGonigal-Kenney, M., Schutte, D., Sparbel, K., et al. (2007). “No one else sees the difference:” family members’ perceptions of changes in persons with preclinical huntington disease. American Journal of Medical Genetics. Part B, Neuropsychiatric Genetics, 144B(5), 636–641.

    Article  Google Scholar 

  • Williams, J., Skirton, H., Paulsen, J. S., Tripp-Reimer, T., Jarmon, L., McGonigal Kenney, M., et al. (2009). The emotional experiences of family carers in Huntington disease. Journal of Advanced Nursing, 65(4), 789.

    Article  PubMed  Google Scholar 

  • Witjes-Ane, M. N., Mertens, B., van Vugt, J. P., Bachoud-Levi, A. C., van Ommen, G. J., & Roos, R. A. (2007). Longitudinal evaluation of “presymptomatic” carriers of Huntington’s disease. Journal of Neuropsychiatry and Clinical Neurosciences, 19(3), 310–317.

    PubMed  Google Scholar 

Download references

Acknowledgments

Dr. Jane Paulsen’s research is supported by the National Institutes for Health, National Institute of Neurological Disorders and Stroke (NS40068) and CHDI Foundation, Inc. The authors report no conflict of interest. We have full control of all primary data and agree to allow the journal to review such data if requested.

Author information

Authors and Affiliations

  1. University of Iowa College of Nursing, Iowa City, IA, USA

    Nancy R. Downing & Janet K. Williams

  2. Departments of Psychiatry and Neurology, University of Iowa Carver College of Medicine, 1-305 MEB, Iowa City, IA, 52242, USA

    Jane S. Paulsen

Authors
  1. Nancy R. Downing
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Janet K. Williams
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Jane S. Paulsen
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Jane S. Paulsen.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Downing, N.R., Williams, J.K. & Paulsen, J.S. Couples’ Attributions for Work Function Changes in Prodromal Huntington Disease. J Genet Counsel 19, 343–352 (2010). https://doi.org/10.1007/s10897-010-9294-0

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10897-010-9294-0

Keywords

Search

Navigation