Caregiver perceptions of accomplishment from assisting people with multiple sclerosis

Abstract

Objectives: Identify factors of informal caregivers, caregiving, and people with multiple sclerosis (MS) receiving assistance that are associated with perceptions of caregiver accomplishment. Methods: National data were collected in a telephone interview survey of 530 informal caregivers and analyzed using an ordered logistic regression model to identify factors associated with perceptions of caregiver accomplishment among 442 of these informal caregivers (caregivers providing all data in their survey responses needed for the regression model). Results: We found that age of the person with MS and duration of caregiving measured by the number of hours per week the caregiver assisted the person with MS were significantly linked to positive perceptions of accomplishment. Conversely, the caregiver’s perception that assisting the person with MS was emotionally draining, a spousal relationship, and caregiver education levels were significantly associated with negative perceptions of accomplishment. Conclusions: Health professionals treating people with MS and their caregivers should be sensitive to the impact caregiving has on the emotional needs of caregivers and to the unique support needs of spousal caregivers. Health practitioners also should be sensitive to the variety of benefit-finding themes expressed by caregivers to facilitate the caregivers’ efforts to discover gains in their experiences assisting people with MS, such as perceptions that caregiving provides a sense of accomplishment.

Implications for Rehabilitation

• Assistance from informal caregivers enables people with multiple sclerosis to remain in their homes as their functional dependence becomes more permanent and their need for personal assistance increases.

• Caregiver perceptions that assisting the person with multiple sclerosis was emotionally draining and a spousal relationship were significantly associated with negative perceptions of accomplishment.

• Health professionals who treat informal caregivers, as well as health professionals treating people with multiple sclerosis, should be sensitive to the impact care giving has on the emotional health of caregivers, especially spousal caregivers.

Keywords::

• benefit finding
• caregiver
• multiple sclerosis
• spouse

Acknowledgment

The authors thank Dr. Nicholas LaRocca, Director of the Health Care Delivery and Policy Research program of the National Multiple Sclerosis Society, for his assistance with this research. The Lone Star Chapter of the NMSS recruited volunteers to pre-test the caregiver survey questionnaire. The Central New England Chapter and the Ozark Branch of the Mid America Chapter of the NMSS recruited volunteers to participate in focus groups for this study. In addition, the authors are grateful to the people with multiple sclerosis who identified their caregivers and the caregivers who participated in the focus groups, the pre-test of the survey questionnaire, and the telephone interviews. Without their cooperation and input, this study could not have been completed.

Declaration of interest: None of the authors have a financial interest or conflict of interest with this research. This research was supported by a contract from the Health Care Delivery and Policy Research Program of the National Multiple Sclerosis Society (HC 0043).