Taking charge of the long-term care research agenda.

Lori Cooper, administrator of Stonebrook Health Care in Concord, California, had heard that families that planned to use Medicaid for payment for nursing home care faced a much more difficult time finding a placement than families that used private means to pay for care. To her surprise, however, she found no published research that observed admission decisions to confirm that paying by Medicaid is a barrier to access.

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Cooper's discovery is typical of the long-term care field: Much of what is said about how nursing homes and other long term care providers react to policy initiatives and reimbursement practices consists of urban legends and anecdotal information. Compared to our understanding of how hospitals and clinics operate, there is relatively little solid research about the real processes of admission and care in long-term care settings. Where research findings do exist, they often are limited to the practices of a single chain of SNFs world of nursing home providers.

This state of knowledge deprives policymakers of information they could use to make informed choices about long-term care policy. Many elected officials still perceive the nursing home field as dominated by profiteers becoming rich from Medicaid reimbursements, despite complaints of industry poverty from the American Health Care Association (AHCA), the American Association of Homes and Services for the Aging (AAHSA), and their lobbyists. These legislators often are unconvinced that each wave of reduced Medicaid reimbursements means that some low-income elderly will be denied access to needed services.

Cooper, completing a graduate degree in public administration at the University of San Francisco, developed a simple method to investigate the issue. Her research team telephoned a random sample of 97 SNFs certified for MediCal, the California version of Medicaid. Each facility was contacted by two researchers seeking admission information for fictional parents. In one contact with the facility, a researcher described the parent as having private resources for long-term care; in a second contact with that facility, another researcher described the parent as planning to pay through MediCal. Nearly two-thirds of the "private-pay callers" were offered potential admission (contingent on assessment), but only 28% of the "MediCal callers" received a similar offer. Researchers who said they had a parent paying through MediCal were told, "No one can be admitted unless someone dies," or "Our corporate office won't let us accept more MediCal residents." The research team found that roughly one-third of the MediCal callers received an offer of a place on the admission waiting list.

Cooper's findings, presented at the 131st annual meeting of the American Public Health Association (APHA) in San Francisco last November, concluded that the waiting-list option did not help many elderly in need of nursing home care. A follow-up survey of one of the SNFs contacted in Cooper's study revealed that roughly half of the 83 elderly placed on the waiting list died before being admitted, while 25 were admitted to another nursing home and only 15 still lived at home or in a caregiver's home. It's impossible to say whether the dozens of elderly who died while waiting for admission would have survived if they had received skilled residential nursing care, but Cooper's findings show that delayed admissions for MediCal beneficiaries might be costing lives.

Cooper is part of a new wave of practitioner-researchers who are shining much-needed light into the black pit of evidence-based knowledge on how nursing homes operate. Federal agencies, which well might focus their efforts on investigating ways to improve nursing home care and operations, are distracted by other priorities. For example, Washington policy for the past decade has emphasized research that supports "community-based" care, as if all elderly and their families choose home care over SNFs as a matter of preference rather than necessity.

In general, the long-term care field has been left to finance and carry out research on its own. Former CMS Administrator Thomas A. Scully told the longterm care community in 2001 that his agency "should provide information on how to improve before the time of inspections," but his vision of CMS as the nursing homes' helpmate, as well as its auditor, produced few results.

Another presentation at the APHA annual meeting illustrates how long-term care researchers are creatively using the funding that meets government priorities to produce findings that may be of practical value to nursing homes. The nonprofit Center for Aging and Health care in West Virginia offered a discussion of the effect family interaction has oil spousal caregiving. Zabedah Saad, research associate for the center, found that a greater burden exists among spousal caregivers when sons visit the impaired parent daily than when sons visit much less frequently. The same pattern was not observed among daughters visiting an impaired parent. In effect, daughters who visit frequently relieve some of the stress, while sons increase it, indicating that the behaviors of the children, rather than their visits, per se, affect their elderly parents' stress levels.

According to Brenda Wamsley, executive director of the Center for Aging and Healthcare in West Virginia, this potentially important discovery was a side benefit of a study funded by CMS to examine (again) the issue of quantitative outcomes of long-term care. The center creatively transformed the CMS-supported research into an opportunity tn examine family dynamics during long-term care.

The Center for the Health Professions of the University of California, San Francisco, similarly used APHA's annual meeting to present findings about the barriers to increasing the number of workers involved in long-term care. The study, directed by Susan Chapman, PhD, RN, was based on an evaluation of a welfare-to-work initiative by the state of California that funded 12 recruitment and training projects. Dr. Chapman reported that recruiting potential participants was not difficult and resulted in roughly 5,000 individuals receiving at least some training in support of long-term care careers. She concluded, however, that problems with English proficiency, criminal background checks, and individual readiness to work at any regular job limited the ability of many of the recruits to complete training. Hence, in California and perhaps in other states, only some of the chronically unemployed are good candidates for future nursing home staff.

Each of these three studies contradicts--or at least modifies--long-held, policy-relevant myths about nursing home operations. They are based on solid evidence, derived from original research. The nursing home field needs more of these types of studies as an antidote to the interpretive literature searches conducted by the National Institute of Medicine that Congress and other policy-makers use to justify their recurring efforts to tighten regulations and cut reimbursements. Fortunately, more practitioners in the long-term care field are willing to take charge of the research agenda rather than waiting for sympathetic funding sources to emerge.

Lori Cooper can be contacted at [e-mail]; Dr. Susan Chapman can be contacted at [e-mail]. To comment on this article, please send e-mail to [e-mail].