| Primary Author: | Marie Cox, DNP, RN, NP-C |
| Organization | North Shore Health System, Long Island Jewish Medical Center |
Abstract
Purpose
The purpose was to describe caregiver quality of life in HD.
Background
Huntington’s disease (HD) is a degenerative brain disorder; individuals lose their ability to walk, talk, think, and reason, which makes the caregiver role extremely challenging. There is no cure and very limited treatment and each child of an affected individual has a 50% chance of inheriting the disease, resulting in a number of serious social implications for the individual, caregiver, and immediate family (Aubeeluck & Buchanan, 2006).
Design, Materials & Methods
The Huntington’s Disease Quality of Life for Carers (HDQoL-C) (Aubeeluck & Buchanan, 2007). questionnaire was used to collect information about caregiver quality of life. This study included a convenience sample of 31 caregivers of pHD from the North Shore Long Island Jewish Health System and two Huntington’s disease support groups. The questionnaire has 34 Likert scale items, demographic and personal information, two open ended questions about what would improve their quality of life. A single item question was added asking respondents to rate their overall quality of life.
Results
The mean score on the 34-item HDQoL-C questionnaire was 55% (SD 17) indicating a low quality of life score. Spearman correlation analyses comparing the single item self-reported quality of life question and the total score on the HDQoL-C were significant (r = 0.67, p = <0.05), indicating perceptions were consistent when rating QoL. The number of hours spent caregiving and working per week showed a significant negative correlation with feelings about living with HD (r = -0.43, p = <0.05 and -0.43, p = <0.05). The number of times a caregiver socialized per month correlated significantly with scores on practical aspects of caregiving (r = 0.41; p = <0.05), satisfaction with life (r = 0.48; p = <0.05), feelings about living with HD (r = 0.47; p = <0.05), and the total HDQoL-C questionnaire score (r = 0.51, p < 0.05).
Conclusion
Nursing and other healthcare professionals must be able to respond to periods of crisis for the HD family, such as referral to neurological and psychiatric services familiar with HD. In addition, it is helpful for healthcare professionals to be familiar with support services such as accessing respite care and long-term care services.
Bibliography
Aubeeluck, A. (2006). A Measure to Assess the Impact of Huntington’s Disease on the Quality of Life of Spousal Carers. British Journal of Neuroscience Nursing, 2(2), 88-95.
Aubeeluck, A., & Buchanan, H. (2007). The Huntington’s Disease Quality of Life Battery for Carers. School of Nursing Institute of Work Health and Organisation University of Nottingham.
© Improvement Science Research Network, 2012
The ISRN published this as received and with permission from the author(s).