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

Quality of Life Research volume 21, pages 1425–1435 (2012)Cite this article

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Abstract

Background

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.

Methods

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).

Results

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’.

Conclusions

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.

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Abbreviations

HD:

Huntington’s disease

QoL:

Quality of life

References

  1. Bates, G., Harper, P., & Jones, L. (2002). Huntington’s disease (3rd ed.). Oxford: Oxford University Press.

    Google Scholar 

  2. Quarrell, O. (2008). Huntington’s disease: The facts (2nd ed.). Oxford: Oxford University Press.

    Google Scholar 

  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.

    Article  PubMed  CAS  Google Scholar 

  4. Veenhuizen, R. B., & Tibben, A. (2009). Coordinated multidisciplinary care for Huntington’s disease. A outpatient department. Brain Research Bulletin, 80, 192–195.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  CAS  Google Scholar 

  6. Rawlings, M. (2010). Huntington’s disease out of the closet? The Lancet, 376(9750), 1372–1373.

    Article  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  8. Martin, J. B. (1984). Huntington’s disease: New approaches to an old problem. Neurology, 34, 1059–1072.

    Article  PubMed  CAS  Google Scholar 

  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.

    PubMed  CAS  Google Scholar 

  10. Aubeeluck, A., & Buchanan, H. (2007). The Huntington’s disease quality of life battery for carers: Reliability and validity. Clinical Genetics, 71, 434–445.

    Article  PubMed  CAS  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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. Hans, M. B., & Koeppen, A. H. (1980). Huntington’s Chorea: Its impact on the spouse. Journal of Nervous and Mental Disorders, 168, 209–214.

    Article  CAS  Google Scholar 

  14. Semple, O. D. (1995). The experiences of family members of persons with Huntington’s disease. Perspectives, 19(4), 4–10.

    PubMed  CAS  Google Scholar 

  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. 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.

    Article  PubMed  CAS  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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. 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.

    Article  Google Scholar 

  20. Shakespeare, J., & Anderson, J. (1993). Huntington’s disease–falling through the net. Health Trends (England), 25(1), 19–23.

    CAS  Google Scholar 

  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. 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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  Google Scholar 

  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. 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.

    Article  Google Scholar 

  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.

  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.

    Article  Google Scholar 

  29. Cummins, R. A. (1997). The comprehensive quality of life scale (CoMQoLA5) manual. Toorak: Deakin University.

    Google Scholar 

  30. Rapley, M. (2003). Quality of life research: A critical introduction. London: Sage.

    Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  Google Scholar 

  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. Smith, J. A., & Osborn, M. (2004). Interpretative phenomenological analysis. In G. Breakwell (Ed.), Doing social psychology (pp. 229–254). Oxford: Blackwell.

    Google Scholar 

  35. Cohen, J. (1960). A coefficient of agreement for nominal scales. Educational and Psychological Measurement, 20, 37–46.

    Article  Google Scholar 

  36. Dura, J. R. (1993). Educational intervention for a Huntington’s disease caregiver. Psychological Reports, 72, 1099–1105.

    Article  PubMed  CAS  Google Scholar 

  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.

    Article  Google Scholar 

  38. Aubeeluck, A., & Moskowitz, C. B. (2008). Huntington’s disease. Part 3: Family aspects of HD. British Journal of Nursing, 17(5), 328–331.

    PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  40. Kessler, S. (1993). Forgotten person in the Huntington disease family. American Journal of Medical Genetics, 48, 145–150.

    Article  PubMed  CAS  Google Scholar 

  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.

    Article  PubMed  CAS  Google Scholar 

  42. Myers, R. H. (2004). Huntington’s disease genetics. NeuroRx, 1, 255–262.

    Article  PubMed  Google Scholar 

  43. Ramani, D., & Saviane, C. (2010). Genetic tests: Between risks and opportunities: The case of neurodegenerative diseases. EMBO Reports, 11, 910–913.

    Article  PubMed  CAS  Google Scholar 

  44. Department of Health. (2009). Living with dementia: National dementia strategy implementation plan. Department of Health, electronic gateway reference 12213.

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Acknowledgments

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.

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Authors and Affiliations

  1. University of Nottingham, Derby, Derbyshire

    Aimee Victoria Aubeeluck

  2. University of Nottingham, Nottingham, Nottinghamshire

    Heather Buchanan

  3. University of Derby, Derby, Derbyshire

    Edward J. N. Stupple

Authors
  1. Aimee Victoria Aubeeluck
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  2. Heather Buchanan
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  3. Edward J. N. Stupple
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Correspondence to Aimee Victoria Aubeeluck.

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Aubeeluck, A.V., Buchanan, H. & Stupple, E.J.N. ‘All the burden on all the carers’: exploring quality of life with family caregivers of Huntington’s disease patients. Qual Life Res 21, 1425–1435 (2012). https://doi.org/10.1007/s11136-011-0062-x

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Keywords

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