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Home and Community Care of the Elderly: Research and Policy Issues Lisa V. Rubenste~n According to Webster's Second New International Dictionary, tech- nology is "any practical art utilizing scientific knowledge; applied science contrasted with pure science." A practical art is "a system of rules or organized modes of operation serving to facilitate the perform- ance of certain actions." By these definitions, home and community care of elderly people ought to become a technology. I am not sure, however, mat it qualifies as a technology yet. To become a technology, home and community care needs clearly stated, scientifically based rules or prin- ciples that can guide its users and practitioners. To develop such prin- ciples, two major types of research are needed. These two types of research, which advance synergistically, might be called "methodologic research" and "policy-type research." METHODOLOGIC RESEARCH By methodologic research, ~ mean basic research directed toward understanding the organism caned "Home and Community Care." What does it look like? What are its roles in society? How can its success be measured? Methodologic research in the area of home and community care includes community-based needs assessments and the development of interventions to meet those needs. It should include He development or further testing of reliable, valid instruments to stratify the populations that would receive care, as well as instruments to measure the economic impact of this care, the quality of the interventions delivered, and the health status and quality of life of recipients of the interventions. 71

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72 I~SA V. RUBENSTE]N Methodologic studies should also include studies of the effective- ness of particular types of home- or commun~ty-care programs. Examples of me~odolog~c studies concerned win program development might include studies of methods for educating careg~vers, consensus panels on Be relative effectiveness of different care strategies, and studies of the relative benefits of vacations in the liming, quantity, or content of a particular service. POLICY-TYPE RESEARCH Policy-type research, in contrast, focuses on studying He impact of programs composed of multiple components. A home care program might include components such as Meals On Wheels, visiting nurses, social workers, and others. The independent variables for policy studies might be variations in enticement, financing, or types of services offered. Such research often begins win a me~odologic phase during which instruments and interven- tions are developed, but it ultimately must proceed using the best avail- able knowledge, assumptions, or instn~ments, whether or not these are adequate to support completely the effort being undertaken. Typically, policy-type studies would include experimental or quasi-experimental evaluations of large-scale demonstration projects. Such projects evaluate the effectiveness of services defined at a level that might be specified in government policy. For example, policymakers might cover or not cover certain seIv- ices, change the payment formula, or change eligibility requirements. But policymakers do not specify whether the diets offered by Meals On Wheels will permit ethnic variations, even though 90 percent of the meals delivered may remain on the tray in the absence of such adjustments. That level of specification is left to the practicing heals and social service professionals operating within the experimental program. PROBLEMS IN RESEARCH Do we, as heady and social service professionals, know enough about what people over age 65 need and want so we can proceed with the next major policy studies? Do we know the nuts and bolts about our services that would let us design them appropriately? Or, should we urge the granting agencies to spend more resources on methodology develop-

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HOME AND COI~MUNITY CARE: RESEARCH AND POLICY ISSUES 73 meet? Both methodology and policy-type research are imperative if home and community care for id elders is to become a scientifically based technology. On one hand, a field that bogs down in the interminable definition of instruments, in minor variations in education, or in arguments about types of services delivered win not blossom. Policy research must often be done quickly for He sake of politicians faced win making difficult legislative or bureaucratic decisions. On the other hand, policy research based on inadequate data about what it should be testing win be mislead- ing. I believe strongly that the next major priority in home and commu- nity care is to make sure that the next round of demonstration projects and randomized trials are based on a substantial, methodologic development phase. IMPLICATION OF RECENT POLICY STUDIES We are fortunate in this field to have access to the results of several large, weH-conceived demonstration projects and experiments in He areas of home and community care. Expenments such as He Triage experiment and the National Channelling Demonstration can be criticized on a num- ber of grounds, but they were certairdy examples of Fought research all. From the results of these and other studies, we know that home and community care are not simple, low-cost panaceas to shorten hospital stays, to replace nursing home days, or to improve health status. Positive effects on patient and caregiver satisfaction and wet/-being were found but were not staggering. The lack of positive results from these studies should force us to rethink our goals and methods. Was it the lack of physician and nurse participation that made case management only mini- maBy successful in the channelling study? Was the target population appropriate? RESEARCH QUESTIONS A basic question we have not yet answered is how wed our models meet He needs of a community of elders. ~ thought at first Hat ~ would be refening ondy to care of sick elders, but we do not know at this time whether very sick elders should be He major or He only focus for health professionals in the area of community care.

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74 LISA V. RUBE:NSIEIN Functional Assessment We might also study the population of elders who are able to perfonn, for example, aU basic activities of daily living. People are now expected to live an average of 20 years after age 65, often with chronic diseases. What kind of services does this nonfra~l group need or use, if any? Do we know what activities these people usually perform or which activities they value? Do they care for grandchildren? Do Hey do volunteer work? What happens to these activities during periods of illness? We might want to find out what role medical and community services should play during this period. A successful program for this group would not be measured by fewer nursing home days but by im- proved function and wet/-being of the patients at affordable costs. Caregivers Most young women now work. We are headed toward a demo- graphic situation in which a single young worker may be supporting as many as four elders. We do not understand the fun economic, social, and health status impacts on these caregivers of canny for very sick people in the home. Caregivers for frail elders are another major population of concern. Caregiver strain and health effects need to be assessed in rela- tionship to different types of community care. VALUES Major research efforts must be undertaken to understand what people value. For example, many elders may not want their children to take care of them at home at major economic and vocational sacrifices. Many elderly people do not want to live win relatives. ~ have had many patients who have said that under no circumstances did they want to move in with their children. Would it be better to foster the development of small, local, higher-quality nursing homes, perhaps of the 20-bed size, as has been tried in parts of Scandinavia, than to try to care for increasingly more elders in the home as has been the pattern in the United Kingdom? We need answers to these questions.

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HOME AND COMMUNITY CARE: RESEARCH AND POLICY ISSUES 75 Community Resources Research studies should, focus on how and whether we can make better use of existing community resources. For example, we have recently developed a problem-oriented, computerized resource guide. This guide defines problems in terms of impairments in physical, psycho- log~cal, or social function and can be used by physicians, social workers, and patients. Ultimately, our approach to aD resources should be more problem oriented and less institutionally oriented. We tend to define services in terms of locations and institution~for example, we Link that fug geriat- ric care includes something like a day hospital, an assessment unit, an acute unit, a nursing home, and home care. Much less is known about variations in He patient population, staffing, or services provided by these programs. How many people or patient days in private day hospitals are accounted for by respite care, how many for monitoring of medications, and how many for preparation for colonoscopies or barium enemas? How many patients get assessments? How many get rehabilitation, and of what, exactly, does the rehabilitation consist? As we measure the effectiveness of different forms of subacute services for elders, we should be sure to measure effectiveness against He best current standard. Previous research has shown that a post-hospital geriatric assessment unit can improve outcomes for a highly selected group of frail elders. Home care and nursing home care outcomes should be measured against a standard rather than against no post-hospital care, as is often done now. Policy Directions ~ think that He next major policy direction from He federal gov- ernment is likely to be aimed at seeing whether prospective payment strategies that have been so effective in reducing length of stay in the acute hospital, if not in reducing overall costs, can be used to unprove the cost-effectiveness of post-hospital care and to increase He hospital's accountability for what happens to patients after hospitalization. In the face of pressures to reduce costs, we need to improve hospital and home care coordination. We need to build interventions into

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76 LISA V. RUB~NSIEIN home and community care projects such as education for hospitals about long-term care and education for patients regarding care alternatives. We need to develop new measures for the quality of care delivered in me long-tenn care setting. Finally, we must watts a fine line over He next decade between patient advocacy and solid, weH-designed research into heady care alter- natives. We must help promote efficient care but not care mat decreases quality of life. Our sick elders are not always able to defend themselves against negative impacts of new policies. REFERENCE 1. Quinn, V., and Hodgson, J. Triage: A long term care study. Zawadski, R., ea., Community Based Systems of Long Term Care, pp. 171-194. New York, Haworth, 1984.