Aug 11, 2009
Care Given to People with MS by Family Members Presents Unique Challenges - Study funded by National MS Society points to need for respite and mental health support for family care givers
A study focusing on family members of people with MS with moderate to severe physical disabilities highlights the unique demographics of this population and their need for support. Health care researcher Robert Buchanan, PhD (Mississippi State University) and colleagues published their results in the July 2009 issue of Disability & Rehabilitation. This study was funded by the National MS Society.
Background: Studies suggest that at any one time, an estimated 30 percent of people with MS require assistance and care at home, and that about 80 percent of that care is provided by informal, unpaid care givers who are usually family members. This type of care is important if it helps people remain in their homes rather than move to a nursing home. To better understand the informal care provided to people with moderate to severe physical disabilities and other aspects of long-term care related to multiple sclerosis, the National MS Society released a request for research proposals on this topic under the auspices of its Health Care Delivery and Policy Research Program. Dr. Buchanan’s team received funding to conduct studies of long-term care issues including a study of informal care-giving in the home.
Study Design: After conducting several focus groups to help in designing the study, telephone interviews were conducted with 530 people, each of whom provided the majority of informal or unpaid care for a person with MS. The study specifically focused on care-giving involving people with moderate to severe physical disabilities. The participants were identified through a mailing made to thousands of people with MS who were signed up as participants of the NARCOMS volunteer patient registry.
Results: The vast majority (78%) of informal care givers were spouses, over half of them husbands. Forty percent reported that another caregiver was involved and half of these were a child. Thirty percent also reported that they had one or more paid caregivers, housekeepers, aides or nurses. Nearly half reported providing more than 20 hours of care per week. This care ranged from household chores such as grocery shopping, preparing meals and managing finances, to personal care such as giving medicines or injections, assisting with bathing, etc.
The impacts of their informal roles as care givers were significant. Over 40 percent of care givers who were employed reported that their care-giving duties had caused them to reduce the amount of time they worked at their jobs over the previous year, and 77 percent who were employed had gone to work late, left work early or took time off because of their care-giving responsibilities. Ten percent of survey respondents reported that they could not work at all because of their care-giving responsibilities.
Among the challenges mentioned most often by informal care givers, over half said they needed help finding time for themselves and nearly half needed help managing emotions and physical stress. About 26 percent of those surveyed felt that they would benefit from treatment or counseling from a mental health professional, but only about one-third of those who identified this as a need had sought this help.
Despite the many challenges faced by informal care givers, the overwhelming majority of survey respondents said that they were happy to help, that they found care-giving rewarding, and that they were proud of the care they provided.
The investigators compared characteristics of informal care givers for people with MS against those of a national study of informal care-giving not specific to the MS population, and found several aspects that make informal care providers for people with MS unique:
• MS is a chronic disease, and care-givers cared for the individual with MS for an average of 13.2 years, compared with the national average of 4.3 years.
• About 50 percent of the MS care-givers reported spending 20 or more hours per week providing care, versus 25 percent in the national study.
• MS care-givers were more often male spouses who lived in the same home as the person needing care; on the national level, most care-givers are females who do not live with the person needing care.
• MS care givers were older, at an average of 60 years of age, compared to the national average of 46 years of age.
This comparison underscores the need for support for family members and other informal care-givers of people with advanced MS since, compared with national averages for other conditions, caring for a person with MS often entails years of care in the home by an older spouse coping with the many challenges and symptoms that come with this chronic disease. This study will help inform the development of support programs by the National MS Society and other agencies.
Read more about MS and Caregivers.