Caring with confidence for Huntington’s disease

Social Care and Neurodisability

Volumn 5, Issue 4, 2014, Pages 191-200

  Dale, Maria ^a   Freire Patino, Dawn ^a   Matthews, Helen ^b  

^a LEICESTERSHIRE PARTNERSHIP NHS TRUST   (United Kingdom)

^b UNIVERSITY OF LEICESTER   (United Kingdom)

Author keywords

Caregiver; Carer; Group; Huntington s disease; Intervention; Psychoeducation

Indexed keywords

EID: 84919384411     PISSN: 20420919     EISSN: None     Source Type: Journal    
DOI: 10.1108/SCN-05-2014-0011     Document Type: Article

References (22)

1. A’Campo, L.E.I., Spliethoff-Kamminga, N.G.A. and Roos, R.A.C. (2012), “The Patient Education Program for Huntington’s Disease (PEP-HD)”, Journal of Huntington’s Disease, Vol. 1 No. 1, pp. 47-56.
2. Aubeeluck, A. (2005), “Caring for the carers: quality of life in Huntington’s disease”, British Journal of Nursing, Vol. 14 No. 8, pp. 452-4.
3. Aubeeluck, A. and Buchanan, H. (2007), “The Huntington’s disease quality of life battery for carers: reliability and validity”, Clinical Genetics, Vol. 71 No. 5, pp. 434-45.
4. Aubeeluck, A. and Moskowitz, C.B. (2008), “Huntington’s disease. Part 3: family aspects of HD”, British Journal of Nursing, Vol. 17 No. 5, pp. 328-31.
5. Dawson, S., Kristjanson, J., Toye, M. and Flett, P. (2004), “Living with Huntington’s disease: need for supportive care”, Nursing & Health Sciences, Vol. 6 No. 2, pp. 123-30.
6. Department of Health, United Kingdom (2008), “Carers at the heart of 21st families and communities: a caring system on your side. A life of your own”, available at: www.gov.uk/government/uploads/attachment_data/file/136492/carers_at_the_heart_of_21_century_families.pdf (accessed 23 April 2014).
7. Department of Health, “Caring with confidence”, United Kingdom, available at: www.nhs.uk/CarersDirect/carers-learning-online/Pages/carers-online-learning.aspx
8. Evans, S.J., Douglas, I., Rawlins, M.D., Wexler, N.S., Tabrizi, S.J. and Smeeth, L. (2013), “Prevalence of adult Huntington’s disease in the UK based on diagnoses recorded in general practice records”, Journal of Neurology, Neurosurgery & Psychiatry, Vol. 84 No. 10, pp. 1156-60.
9. Hartelius, L., Jonsson, M., Rickeberg, A. and Laakso, K. (2010), “Communication and Huntington’s disease: qualitative interviews and focus groups with persons with Huntington’s disease, family members, and carers”, Int J Lang Commun Disord, Vol. 45 No. 3, pp. 381-93.
10. Lowit, A. and Van Teijlingen, E.R. (2005), “Avoidance as a strategy of (not) coping: qualitative interviews with carers of Huntington’s disease patients”, BMC Family Practice, Vol. 6 No. 38, available at: www.biomedcentral.com/1471-2296/6/38 (accessed 12 February 2014).
11. McCabe, M.P., Firth, L. and O’Connor, E. (2009), “A comparison ofmood and quality of life among people with progressive neurological illnesses and their caregivers”, J Clin PsycholMed Settings, Vol. 16No. 4, pp. 355-62.
12. Piira, A., van Walsem, M.R., Mikalsen, G., Nilsen, K.H., Knutsen, S. and Frich, J. (2013), “Effects of a one year intensive multidisciplinary rehabilitation program for patients with Huntington’s disease: a prospective intervention study”, PLoS Curr, Vol. 5, available at: http://currents.plos.org/hd/article/effects-of-a-one-yearintensive-multidisciplinary-rehabilitation-program-for-patients-with-huntingtons-disease-a-prospectiveintervention-study/ (accessed 20 February 2014).
13. Rolland, J.S. and Williams, J.K. (2005), “Toward a biopsychosocial model for 21st-century genetics”, Family Process, Vol. 44 No. 1, pp. 3-24.
14. Roscoe, L.A., Corsentino, E., Watkins, S., McCall, M. and Sanchez-Ramos, J. (2009), “Well-being of family caregivers of persons with late-stage Huntington’s disease: lessons in stress and coping”, Health Commun, Vol. 24 No. 3, pp. 239-48.
15. Shoulson, I. and Fahn, S. (1979), “Huntington disease: clinical care and evaluation”, Neurology, Vol. 29 No. 1, pp. 1-3.
16. Skirton, H., Williams, J.K., Barnette, J.J and Paulsen, J.S. (2010), “Huntington disease: families’ experiences of healthcare services”, Journal of Advanced Nursing, Vol. 66 No. 3, pp. 500-10.
17. Soltysiak, B., Gardiner, P. and Skirton, H. (2008), “Exploring supportive care for individuals affected by Huntington disease and their family caregivers in a community setting”, Journal of Clinical Nursing, Vol. 17 No. 7b, pp. 226-34.
18. Tabrizi, S.J., Scahill, R.I., Owen, G., Durr, A., Leavitt, B.R., Roos, R.A., Borrowsky, B., Landwehrmeyer, B., Frost, C., Johnson, H., Craufurd, D., Reilmann, R., Stout, J.C. and Langbehn, D.R. (2013), “Predictors of phenotypic progression and disease onset in premanifest and early-stage Huntington’s disease in the TRACK-HD study: analysis of 36-month observational data”, The Lancet Neurology, Vol. 12 No. 7, pp. 637-49.
19. 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, Vol. 72 No. 6, pp. 971-83.
20. Williams, J.K., Skirton, H., Barnette, J.J. and Paulsen, J.S. (2012), “Family carer personal concerns in Huntington disease”, Journal of Advanced Nursing, Vol. 68 No. 1, pp. 137-46.
21. Williams, K., Skirton, H., Paulsen, J.S., Tripp-Reimer, T., Jarmon, L., Kenney, M.M., Birrer, E., Hennig, L. and Honeyford, J. (2009), “The emotional experiences of family carers in Huntington disease”, Journal of Advanced Nursing, Vol. 65 No. 4, pp. 789-98.
22. Yeandle, S. and Wigfield, A. (Eds) (2012), Training and Supporting Carers: The National Evaluation of the Caring with Confidence Programme, Centre for International Research on Care, Labour and Equalities, University of Leeds, Leeds.