Quality of Life Research

, Volume 21, Issue 8, pp 1425–1435 | Cite as

‘All the burden on all the carers’: exploring quality of life with family caregivers of Huntington’s disease patients

  • Aimee Victoria AubeeluckEmail author
  • Heather Buchanan
  • Edward J. N. Stupple



Existing research suggests that family caregivers of persons with Huntington’s disease face a unique series of problems, linked to the complex nature of the disease. There is little research that explicitly investigates the impact of HD on the quality of life (QoL) of the family caregiver. The purpose of this study was to explore the quality of life issues for family carers of Huntington’s disease patients in a focus group setting.


Participants were recruited via a Huntington’s Disease Association (HDA) family conference day. Six semi-directed focus groups (n = 47) explored disease-specific aspects of QoL that were deemed important to family carers of this carer group. Data were analysed using Interpretative Phenomenological Analysis (IPA).


Analysis of the focus group data identified four superordinate themes: ‘Levels of Support’, ‘Dissatisfaction with Caregiving Role’, ‘Practical Aspects of Caring’ and ‘Feelings and Emotional Well-being’.


These data provide evidence that QoL is compromised in many ways for HD family carers. The carers in this study often negated their own needs as their caregiving role overwhelmed them and ‘took over’ their lives.


Huntington’s disease Family caregiving Carers Quality of life Well-being Focus groups 



Huntington’s disease


Quality of life



Thanks are given to the family caregivers who gave up their limited time to take part in this research and so openly sharing their experiences. We are also grateful to the three anonymous reviewers for their constructive comments in assisting us in enhancing the manuscript.


  1. 1.
    Bates, G., Harper, P., & Jones, L. (2002). Huntington’s disease (3rd ed.). Oxford: Oxford University Press.Google Scholar
  2. 2.
    Quarrell, O. (2008). Huntington’s disease: The facts (2nd ed.). Oxford: Oxford University Press.Google Scholar
  3. 3.
    Imarisio, S., Carmichael, J., Korolchuk, V., Chen, C.-W., Saiki, S., Rose, C., et al. (2008). Huntington’s disease: From pathology and genetics to potential therapies. Biochemical Journal, 412, 191–209.PubMedCrossRefGoogle Scholar
  4. 4.
    Veenhuizen, R. B., & Tibben, A. (2009). Coordinated multidisciplinary care for Huntington’s disease. A outpatient department. Brain Research Bulletin, 80, 192–195.PubMedCrossRefGoogle Scholar
  5. 5.
    Gusella, J. F., Wexler, N. S., Conneally, P. M., Naylor, S. L., Anderson, M. A., Tanzi, R. E., et al. (1983). A polymorphic DNA marker genetically linked to Huntington’s disease. Nature, 306(5940), 234–238.PubMedCrossRefGoogle Scholar
  6. 6.
    Rawlings, M. (2010). Huntington’s disease out of the closet? The Lancet, 376(9750), 1372–1373.CrossRefGoogle Scholar
  7. 7.
    Hartelius, L., Jonsson, M., Rickeberg, A., & Laakso, K. (2010). Communications 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, 45(3), 381–393.PubMedCrossRefGoogle Scholar
  8. 8.
    Martin, J. B. (1984). Huntington’s disease: New approaches to an old problem. Neurology, 34, 1059–1072.PubMedCrossRefGoogle Scholar
  9. 9.
    Hayden, M. R., Ehrlich, R., Parker, H., & Ferera, S. J. (1980). Social perspectives in Huntington’s Chorea. South African Medical Journal, 58, 201–203.PubMedGoogle Scholar
  10. 10.
    Aubeeluck, A., & Buchanan, H. (2007). The Huntington’s disease quality of life battery for carers: Reliability and validity. Clinical Genetics, 71, 434–445.PubMedCrossRefGoogle Scholar
  11. 11.
    McCabe, M. P., Firth, L., & O’Connor, E. (2009). A comparison of mood an quality of life among people with progressive neurological illnesses and their caregivers. Journal of Clinical Psychology in Medical Settings, 16(4), 355–362.PubMedCrossRefGoogle Scholar
  12. 12.
    Read, J. E., Langbehn, D. R., Owen, G., Durr, A., Leavitt, B. R., Roos, R. A. C., et al. (2010). Quality of life in Huntington’s disease: A comparative study investigating the impact on spouses of those with premanifest and early disease. J Neurol Neurosurg Psychiatry, EDHN Plenary Abstracts, 81, 23–24.Google Scholar
  13. 13.
    Hans, M. B., & Koeppen, A. H. (1980). Huntington’s Chorea: Its impact on the spouse. Journal of Nervous and Mental Disorders, 168, 209–214.CrossRefGoogle Scholar
  14. 14.
    Semple, O. D. (1995). The experiences of family members of persons with Huntington’s disease. Perspectives, 19(4), 4–10.PubMedGoogle Scholar
  15. 15.
    Lowit, A., & 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), 14.Google Scholar
  16. 16.
    Tyler, A., Harper, P. S., Davies, K., & Newcome, R. G. (1983). Family breakdown and stress in Huntington’s Chorea. Journal of Biosocial Science, 15, 127–138.PubMedCrossRefGoogle Scholar
  17. 17.
    Ready, R. E., Mathews, M., Leserman, A., & Paulsen, J. S. (2008). Patient and caregiver quality of life in Huntington’s disease. Movement Disorders, 23(5), 721–726.PubMedCrossRefGoogle Scholar
  18. 18.
    Korer, J., & Fitzsimmons, J. S. (1985). The effect of Huntington’s Chorea on family life. British Journal of Social Work, 15, 581–597.Google Scholar
  19. 19.
    Soltysiak, B., Gardiner, P., & Skirton, H. (2008). Exploring supportive care for individuals affected by Huntington disease and their family caregivers in a community setting. Journal of Clinical Nursing, 17b(7), 226–243.CrossRefGoogle Scholar
  20. 20.
    Shakespeare, J., & Anderson, J. (1993). Huntington’s disease–falling through the net. Health Trends (England), 25(1), 19–23.Google Scholar
  21. 21.
    Skirton, H., & Glendinning, N. (2007). Using research to develop care for patients with Huntington’s disease. British Journal of Nursing, 6(2), 83–90.Google Scholar
  22. 22.
    Williams, J. K., Skirton, H., Paulsen, J. S., Tripp-Reimer, T., Jarmon, L., McGonigal Kenney, M., et al. (2009). The emotional experience of family carers in Huntington’s disease. Journal of Advanced Nursing, 65(4), 789–798.PubMedCrossRefGoogle Scholar
  23. 23.
    Holley, C. K., & Mast, B. T. (2009). The impact of Anticipatory grief on caregiver burden in dementia caregivers. The Gerontologist, 49(3), 388–396.PubMedCrossRefGoogle Scholar
  24. 24.
    Czaja, S. J., Gitlin, L. N., Schulz, R., Zhang, S., Burgio, L. D., Stevens, A. D., et al. (2010). Development of the risk appraisal measure: A brief screen to identify risk areas and guide interventions for dementia caregivers. Journal of the American Geriatrics Society, 57(6), 1064–1072.CrossRefGoogle Scholar
  25. 25.
    Erwin, C., Williams, J. K., Juhl, A. R., Mengeling, M., Mills, J. A., Bombard, Y., et al. (2010). Perception, experience, and response to genetic discrimination in Huntington disease: The international RESPOND-HD study. American Journal of Medical Genetics Part B, 153B, 1081–1093.Google Scholar
  26. 26.
    Johnson, C. D., & Davidson, B. L. (2010). Huntington’s disease: progress towards effective disease-modifying treatments and a cure. Human Molecular Genetics, 19(1), 98–102.CrossRefGoogle Scholar
  27. 27.
    Aubeeluck, A. (2005) The development and validation of a scale to measure the impact of Huntington’s disease on the quality of life of family carers, Unpublished Doctoral Dissertation, Derby, UK: University of Derby.Google Scholar
  28. 28.
    WHQOL Group. (1995). The world health organisation quality of life assessment (WHOQOL): Position paper from the world health organisation. Social Scientific Medicine, 41(10), 1403–1409.CrossRefGoogle Scholar
  29. 29.
    Cummins, R. A. (1997). The comprehensive quality of life scale (CoMQoLA5) manual. Toorak: Deakin University.Google Scholar
  30. 30.
    Rapley, M. (2003). Quality of life research: A critical introduction. London: Sage.Google Scholar
  31. 31.
    Smith, J. A., Michie, S., Stephenson, M., & Quarrell, O. (2002). Risk perception & decision-making processes in candidates for the genetic test for Huntington’s disease: An interpretative phenomenological analysis. Journal of Health Psychology, 7, 131–144.PubMedCrossRefGoogle Scholar
  32. 32.
    Biggerstaff, D., & Thompson, A. (2008). Interpretative phenomenological analysis (APA): A qualitative methodology of choice in healthcare research. Qualitative Research in Psychology, 5, 173–183.CrossRefGoogle Scholar
  33. 33.
    Smith, J. A. (1995). Semi structured interviewing & qualitative analysis. In J. A. Smith, R. Harre, & L. Van Langenhove (Eds.), Rethinking methods in psychology (pp. 229–254). London: Sage.Google Scholar
  34. 34.
    Smith, J. A., & Osborn, M. (2004). Interpretative phenomenological analysis. In G. Breakwell (Ed.), Doing social psychology (pp. 229–254). Oxford: Blackwell.Google Scholar
  35. 35.
    Cohen, J. (1960). A coefficient of agreement for nominal scales. Educational and Psychological Measurement, 20, 37–46.CrossRefGoogle Scholar
  36. 36.
    Dura, J. R. (1993). Educational intervention for a Huntington’s disease caregiver. Psychological Reports, 72, 1099–1105.PubMedCrossRefGoogle Scholar
  37. 37.
    Aubeeluck, A., & Buchanan, H. (2006). Capturing the Huntington’s disease spousal carer experience: A preliminary investigation using he photovoice method. Dementia: The international Journal of Social Research and Practice, 5(1), 95–116.CrossRefGoogle Scholar
  38. 38.
    Aubeeluck, A., & Moskowitz, C. B. (2008). Huntington’s disease. Part 3: Family aspects of HD. British Journal of Nursing, 17(5), 328–331.PubMedGoogle Scholar
  39. 39.
    Skirton, H., Williams, J., Jackson Barnette, J., & Paulsen, J. S. (2010). Huntington’s disease: Families’ experiences of healthcare services. Journal of Advanced Nursing, 66(3), 500–519.PubMedCrossRefGoogle Scholar
  40. 40.
    Kessler, S. (1993). Forgotten person in the Huntington disease family. American Journal of Medical Genetics, 48, 145–150.PubMedCrossRefGoogle Scholar
  41. 41.
    Williams, J. K., Schutte, D. L., Holkup, P. A., Evers, C., & Muilenburg, A. (2000). Psychosocial impact of predictive testing for Huntington’s disease on support persons. American Journal of Medical Genetics, 96, 353–359.PubMedCrossRefGoogle Scholar
  42. 42.
    Myers, R. H. (2004). Huntington’s disease genetics. NeuroRx, 1, 255–262.PubMedCrossRefGoogle Scholar
  43. 43.
    Ramani, D., & Saviane, C. (2010). Genetic tests: Between risks and opportunities: The case of neurodegenerative diseases. EMBO Reports, 11, 910–913.PubMedCrossRefGoogle Scholar
  44. 44.
    Department of Health. (2009). Living with dementia: National dementia strategy implementation plan. Department of Health, electronic gateway reference 12213.Google Scholar

Copyright information

© Springer Science+Business Media B.V. 2011

Authors and Affiliations

  • Aimee Victoria Aubeeluck
    • 1
    Email author
  • Heather Buchanan
    • 2
  • Edward J. N. Stupple
    • 3
  1. 1.University of NottinghamDerbyDerbyshire
  2. 2.University of NottinghamNottinghamNottinghamshire
  3. 3.University of DerbyDerbyDerbyshire

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