Small grants, big goals: innovative research program focuses on MS care and quality of life - National Multiple Sclerosis Society's "Small Grants in Health Care Research" - includes list of projects funded as of 6/7/90

Inside MS, Fall, 1990 by Phyllis Shaw

SMALL GRANTS BIG GOALS

Launched by the Society two years ago, a trail-breaking grant program for people with multiple sclerosis is moving into high gear. Called "Small Grants in Health Services Research" (HSR), this is one of several grant programs administered by the Society's Research and Medical Programs Department. It provides short-term funding for studies of hospital and medical care, as well as methods of improving home health care, housing, employment, day care, rural health, insurance, and family support systems.

Believed to be the only one of its kind in any voluntary health agency, the program is now supporting 15 projects around the country.

HSR evolved as people with MS became more knowledgeable and vocal about the care they were getting or -- more to the point -- not getting. As Dr. Robert Enteen, director of health research and policy programs, puts it, "Throughout its history the Society has focused, reasonably, on biomedical research. Obviously, nothing is as important as finding the cause of and cure for multiple sclerosis. We have, however, some 250,000 Americans who have the disease now; they and their families are affected by it every day of their lives. What they're saying to us is, get us home care, open up health insurance, help relieve our caregivers, tend to our employment and social needs.'"

Dr. Stephen Reingold, vice president, Research and Medical Programs Department, points out that "HSR is an important component of a truly comprehensive research approach to MS," complementing the biomedical research grants program by illuminating service delivery and quality-of-life problems and testing out solutions for them.

Unlike the more familiar biomedical grants, HSR grants are relatively small, with funds covering only up to one year of research. Thus, they are used generally for start-up phases of larger projects.

For instance, a Rochester, New York study group under Drs. Margaret Wineman and Ruth O'Brien was awarded an HSR grant to determine the willingness of people with advanced MS to use three types of long-term care services: a community-based residence, a day care center, and a respite program for their caregivers.

This grant grew out of the pressing need to investigate the problems inherent in institutional living. Some 12,000 people with MS -- many under 50 years old -- now live in nursing homes. Many of them do not need the battery of services available in those institutions and could do with far less if they had better support at home or in the community. The Rochester investigators interviewed 102 people with MS in their homes and talked to 50 caregivers as well. The people with MS, most of them needing a fair amount of ambulatory assistance or using a wheelchair, were asked about their functional ability and activities of daily living: could they shop, cook, do laundry, manage transportation?

In turn, caregivers were asked whom they could rely on for their own emotional support, guidance, and advice on home management. Were there people to socialize with? How much of a burden was caregiving proving to be? Both groups were asked about their preferences in long-term care services.

"The upshot of all their answers," Dr. Wineman said, "was that people with MS clearly want to avoid going into a nursing home. Their first choice is a day center, primarily because they don't want to be separated from their families. The majority said they would use such a center. Their next choice is a community residence, so long as it doesn't have the ambiance of an institution.

"Based on these findings we envision a four-phase plan. The first phase would be a day program that people will gravitate to. We'll need an esthetically pleasing environment that provides a range of wellness and support services for the person with MS.

"The second phase would be a limited-stay sleep-in program for people with MS, to provide more extended respite for their caregivers than would be available through the day center.

"The third phase would be shared apartments which would include a 'shared aide' concept that has been pioneered in the Rochester area. And the final phase would be a 'living center,' that is, a skilled nursing facility for those who need one. We have to start by getting fund for the day center, and marshalling community and business support for the effort," she concluded.

The entire Rochester project was undertaken in collaboration with the Rochester Area Chapter of the Society, and the chapter reports that two area hospitals have already approached it to help develop each of the four phases.

Dr. Wineman notes, "The sad thing is that we completed interviewing in January, and nine of our interviewees are already institutionalized, eight of them because of some disturbance with the family caregiver. They might well have been able to avoid long-term institutionalization had these alternatives been available to help them with services they needed."

Some people disabled with MS do indeed live at home with the services of a paid personal care attendant. There are problems inherent in this arrangement. Attendants may be insensitive, inadequately trained, and not intent on long-term employment. Burn-out is a serious caregiver problem.