The emotional experiences of family carers in Huntington disease
Article first published online: 18 FEB 2009
© 2009 The Authors. Journal compilation © 2009 Blackwell Publishing Ltd
Journal of Advanced Nursing
Volume 65, Issue 4, pages 789–798, April 2009
How to Cite
Williams, J. K., Skirton, H., Paulsen, J. S., Tripp-Reimer, T., Jarmon, L., McGonigal Kenney, M., Birrer, E., Hennig, B. L. and Honeyford, J. (2009), The emotional experiences of family carers in Huntington disease. Journal of Advanced Nursing, 65: 789–798. doi: 10.1111/j.1365-2648.2008.04946.x
- Issue published online: 2 MAR 2009
- Article first published online: 18 FEB 2009
- Accepted for publication 12 December 2008
- focus groups;
- Huntington disease;
- psychological impact;
- research report
Title. The emotional experiences of family carers in Huntington disease.
Aim. This paper is a report of a study conducted to examine the emotional experience of caregiving by family carers of people with Huntington disease and to describe strategies they used to deal with that experience.
Background. Huntington disease, commonly diagnosed in young to middle adulthood, is an inherited single gene disorder involving loss of cognitive, motor and neuropsychiatric function. Many family members become caregivers as well as continuing as parents and wage earners. The emotional aspects of caregiving contribute to mental health risks for family members.
Methods. Focus groups were conducted with 42 adult carers of people with Huntington disease in four United States and two Canadian Huntington disease centers between 2001 and 2005. Data were analyzed through descriptive coding and thematic analysis.
Findings. All participants reported multiple aspects of emotional distress. Being a carer was described as experiencing disintegration of one’s life. Carers attempted to cope by seeking comfort from selected family members, anticipating the time when the care recipient had died and/or using prescription medications. Spousal carers were distressed by the loss of their relationship with their spouse and dealt with this by no longer regarding the person as an intimate partner. Carers were concerned about the disease risk for children in their families and hoped for a cure.
Conclusion. Emotional distress can compromise the well-being of family carers, who attempt to maintain multiple roles. Nurses should monitor carer mental health, identify sources of emotional distress and support effective strategies used by carers to mediate distress.