title: 'All the burden on all the carers': exploring quality of life with family caregivers of Huntington's disease patients.
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.
authors.affiliation: University of Nottingham, Derby, Derbyshire. aimee.aubeeluck@nottingham.ac.uk
authors.forename: Aimee Victoria
authors.initials: AV
authors.lastname: Aubeeluck
authors.forename: Heather
authors.initials: H
authors.lastname: Buchanan
authors.forename: Edward J N
authors.initials: EJ
authors.lastname: Stupple
mesh_terms: D000223:Adaptation, Psychological; D017028:Caregivers / Q000523:psychology*; D005260:Female; D017144:Focus Groups; D006801:Humans; D006816:Huntington Disease / Q000523:psychology*; D008297:Male; D011594:Psychometrics; D036301:Qualitative Research; D011788:Quality of Life / Q000523:psychology*; D012944:Social Support; D013315:Stress, Psychological; D011795:Surveys and Questionnaires
references.citation: J Nerv Ment Dis. 1980 Apr;168(4):209-14
references.pmid: 6444999
references.citation: Nature. 1983 Nov 17-23;306(5940):234-8
references.pmid: 6316146
references.citation: J Adv Nurs. 2010 Mar;66(3):500-10
references.pmid: 20423385
references.citation: Lancet. 2010 Oct 23;376(9750):1372-3
references.pmid: 20594589
references.citation: Hum Mol Genet. 2010 Apr 15;19(R1):R98-R102
references.pmid: 20421366
references.citation: Mov Disord. 2008 Apr 15;23(5):721-6
references.pmid: 18175350
references.citation: Am J Med Genet. 1993 Oct 15;48(3):145-50
references.pmid: 8291568
references.citation: J Biosoc Sci. 1983 Apr;15(2):127-38
references.pmid: 6221016
references.citation: J Clin Psychol Med Settings. 2009 Dec;16(4):355-62
references.pmid: 19639395
references.citation: BMC Fam Pract. 2005 Sep 14;6:38
references.pmid: 16162290
references.citation: Am J Med Genet B Neuropsychiatr Genet. 2010 Jul;153B(5):1081-93
references.pmid: 20468061
references.citation: Brain Res Bull. 2009 Oct 28;80(4-5):192-5
references.pmid: 19576265
references.citation: EMBO Rep. 2010 Dec;11(12):910-3
references.pmid: 21088677
references.citation: Psychol Rep. 1993 Jun;72(3 Pt 2):1099-105
references.pmid: 8337312
references.citation: J Health Psychol. 2002 Mar;7(2):131-44
references.pmid: 22114233
references.citation: NeuroRx. 2004 Apr;1(2):255-62
references.pmid: 15717026
references.citation: Br J Nurs. 1997 Jan 23-Feb 12;6(2):83-90
references.pmid: 9116444
references.citation: Br J Nurs. 2008 Mar 13-26;17(5):328-31
references.pmid: 18414297
references.citation: J Adv Nurs. 2009 Apr;65(4):789-98
references.pmid: 19228233
references.citation: Biochem J. 2008 Jun 1;412(2):191-209
references.pmid: 18466116
references.citation: Am J Med Genet. 2000 Jun 12;96(3):353-9
references.pmid: 10898914
references.citation: Clin Genet. 2007 May;71(5):434-45
references.pmid: 17489849
references.citation: Int J Lang Commun Disord. 2010 May-Jun;45(3):381-93
references.pmid: 20144006
references.citation: Soc Sci Med. 1995 Nov;41(10):1403-9
references.pmid: 8560308
references.citation: J Am Geriatr Soc. 2009 Jun;57(6):1064-72
references.pmid: 19453305
references.citation: S Afr Med J. 1980 Aug 2;58(5):201-3
references.pmid: 6447366
references.citation: Perspectives. 1995 Winter;19(4):4-10
references.pmid: 8571758
references.citation: Gerontologist. 2009 Jun;49(3):388-96
references.pmid: 19386826
references.citation: J Clin Nurs. 2008 Apr;17(7B):226-34
references.pmid: 18578798
references.citation: Neurology. 1984 Aug;34(8):1059-72
references.pmid: 6146951
references.citation: Health Trends. 1993;25(1):19-23
references.pmid: 10125696