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Quality of Life Research
Gepubliceerd in: Quality of Life Research 8/2012

01-10-2012

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

Auteurs: Aimee Victoria Aubeeluck, Heather Buchanan, Edward J. N. Stupple

Gepubliceerd in: Quality of Life Research | Uitgave 8/2012

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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.
vorige artikel The quality of work life of people with severe mental disorders working in social enterprises: a qualitative study
volgende artikel Using three legacy measures to develop a health-related quality of life tool for young adult survivors of childhood cancer
Literatuur
1.
Bates, G., Harper, P., & Jones, L. (2002). Huntington’s disease (3rd ed.). Oxford: Oxford University Press.
2.
Quarrell, O. (2008). Huntington’s disease: The facts (2nd ed.). Oxford: Oxford University Press.
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.PubMedCrossRef
4.
Veenhuizen, R. B., & Tibben, A. (2009). Coordinated multidisciplinary care for Huntington’s disease. A outpatient department. Brain Research Bulletin, 80, 192–195.PubMedCrossRef
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.PubMedCrossRef
6.
Rawlings, M. (2010). Huntington’s disease out of the closet? The Lancet, 376(9750), 1372–1373.CrossRef
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.PubMedCrossRef
8.
Martin, J. B. (1984). Huntington’s disease: New approaches to an old problem. Neurology, 34, 1059–1072.PubMedCrossRef
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
10.
Aubeeluck, A., & Buchanan, H. (2007). The Huntington’s disease quality of life battery for carers: Reliability and validity. Clinical Genetics, 71, 434–445.PubMedCrossRef
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.PubMedCrossRef
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.
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.CrossRef
14.
Semple, O. D. (1995). The experiences of family members of persons with Huntington’s disease. Perspectives, 19(4), 4–10.PubMed
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.
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.PubMedCrossRef
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.PubMedCrossRef
18.
Korer, J., & Fitzsimmons, J. S. (1985). The effect of Huntington’s Chorea on family life. British Journal of Social Work, 15, 581–597.
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.CrossRef
20.
Shakespeare, J., & Anderson, J. (1993). Huntington’s disease–falling through the net. Health Trends (England), 25(1), 19–23.
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.
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.PubMedCrossRef
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.PubMedCrossRef
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.CrossRef
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.
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.CrossRef
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.CrossRef
29.
Cummins, R. A. (1997). The comprehensive quality of life scale (CoMQoLA5) manual. Toorak: Deakin University.
30.
Rapley, M. (2003). Quality of life research: A critical introduction. London: Sage.
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.PubMedCrossRef
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.CrossRef
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.
34.
Smith, J. A., & Osborn, M. (2004). Interpretative phenomenological analysis. In G. Breakwell (Ed.), Doing social psychology (pp. 229–254). Oxford: Blackwell.
35.
Cohen, J. (1960). A coefficient of agreement for nominal scales. Educational and Psychological Measurement, 20, 37–46.CrossRef
36.
Dura, J. R. (1993). Educational intervention for a Huntington’s disease caregiver. Psychological Reports, 72, 1099–1105.PubMedCrossRef
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.CrossRef
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
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.PubMedCrossRef
40.
Kessler, S. (1993). Forgotten person in the Huntington disease family. American Journal of Medical Genetics, 48, 145–150.PubMedCrossRef
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.PubMedCrossRef
42.
43.
Ramani, D., & Saviane, C. (2010). Genetic tests: Between risks and opportunities: The case of neurodegenerative diseases. EMBO Reports, 11, 910–913.PubMedCrossRef
44.
Department of Health. (2009). Living with dementia: National dementia strategy implementation plan. Department of Health, electronic gateway reference 12213.
Metagegevens
Titel
‘All the burden on all the carers’: exploring quality of life with family caregivers of Huntington’s disease patients
Auteurs
Aimee Victoria Aubeeluck
Heather Buchanan
Edward J. N. Stupple
Publicatiedatum
01-10-2012
Uitgeverij
Springer Netherlands
Gepubliceerd in
Quality of Life Research / Uitgave 8/2012
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-011-0062-x

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