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a Gerontology Institute, University of Massachusetts Boston
Correspondence: Francis G. Caro, PhD, University of Massachusetts Boston, Gerontology Institute, 100 Morrissey Boulevard, Boston, MA 02125-3393. E-mail: frank.caro{at}umb.edu.
Laurence G. Branch, PhD
Discovering what works in home care begins with asking the right questions. Two principles from the evaluation research field are useful in understanding what results should be expected of home care: First, examination of program activities may be the key to discovering program objectives (Deutscher 1977
); second, evidence of immediate effects of programs is much more likely to be found than evidence of less proximate effects (Rossi, Freeman, and Lipsey 1999). Therefore, to understand what home care is likely to accomplish, we should start by examining the specific tasks involved in home care and focus on immediately achievable program objectives.
The core set of home care activities consists of personal assistance services intended to compensate for self-care limitations largely as reflected in activities of daily living (ADL) and instrumental activities of daily living (IADL) measures. Home care does for those with self-care limitations what they cannot do for themselves. More specifically, home care provides assistance with bathing, dressing, meal preparation, shopping, and so on for those who cannot perform these tasks independently. The immediate aim of personal assistance, therefore, is to assure that recipients have adequate solutions to challenges of daily living (Caro 1981). I have come to use the term "quality of circumstances" to describe largely objective measures of the adequacy of solutions to problems of daily living. (I avoid the term "quality of life" because it is typically conceived of as an entirely subjective construct.) Some examples of quality-of-circumstance content may be helpful. In the quality-of-circumstance framework, a highly favorable outcome for assistance with mobility is evidence that the recipient moves around in the living environment at will day and night with full access to all rooms in the residence and does so without experiencing injury. For those whose home care addresses inability to prepare meals, the quality-of-circumstance framework documents eating experiences from both a nutritional and enjoyment perspective. The nutritional aspect includes weight gain or loss, dietary balance, quantity of food available, and frequency of eating opportunities. Enjoyment of the eating experience includes the social context, satisfaction with the types and variety of food available, and satisfaction with the eating environment. For those who are unable to shop, the adequacy of assistance with shopping is measured by how fully the household is supplied with regularly needed items and how rapidly missing items are obtained. The quality-of-circumstance framework has content that corresponds to each ADL and IADL item. In addition, it includes other dimensions such as shelter adequacy, privacy, autonomy, and activity (Caro, Gottlieb, and Safran-Norton 2000).
Formal home care often has a second dimension in that it supplements the efforts of informal caregivers. A second aim of home care, then, should be to provide relief to informal caregivers (Caro 1981).
The approach proposed here deliberately side-steps the conventional argument that the aim of publicly funded home care is to prevent nursing home placement. Prevention of nursing home placement is usually a desirable outcome for home care, but it is a risky basis for judging the efficacy of home care because of the lack of close proximity between the provision of formal home care services and nursing home placement. Because many forces influence nursing home placements, the effects of formal home care in preventing or delaying nursing home placement can be swamped by the effects of other, more powerful forces. Further, formal home care is appropriate for many who are not immediate candidates for nursing home placement. For these reasons, evidence of nursing home avoidance should be considered a bonus for home care rather than the fundamental basis upon which the contributions of services are judged.
Does a framework that focuses on solutions to problems of daily living let home care off the accountability hook too easily? By no means! The key to accountability for home care is the adequacy of the solutions to daily living needs that it provides. The evaluation issue for home care, then, is largely one of quality: Is the quality of the solutions to problems of daily living achieved through home care sufficient to meet a standard of adequacy? We then need to ask how quality is defined and how a standard of adequacy is established. Consumers, informal caregivers, providers, and those who provide the financing may have different ideas about both quality and standards of adequacy. When we know the extent to which home care improves the quality of daily living experiences, we can introduce efficiency considerations. We can also ask whether some strategies are more efficient than others in achieving comparable gains in the quality of solutions to problems of daily living.
Quality of circumstances is not the only immediate objective that has been proposed for home care. "Reducing unmet needs" is an important example of an immediate outcome measure that has been used successfully in home care research. In the Channeling demonstrations, for example, formal home care services led to reductions in unmet needs (Kemper 1988). Like quality of circumstances, the unmet needs framework focuses on ADL and IADL domains. In some applications, evaluators simply calculate the proportion of identified needs that receive attention. Other studies distinguish between needs that are "partially met" and those that are "fully met."
The major advantage of the quality-of-circumstance approach over the "meeting needs" formulation is political. Quality of circumstances offers a positive language for presenting favorable outcomes of home care services, that is, quality of circumstances is formulated to offer evidence of the extent to which home care improves the lives of recipients. The home care field may be more successful in capturing public imagination and public resources when it presents evidence of "improving lives" than when it demonstrates that it "reduces unmet needs."
Quality of circumstances also tackles issues that are frequently ambiguous in formulations that focus on "meeting needs." Most important, quality of circumstances operationalizes what it means to "meet needs." Moreover, to the extent feasible, it does so objectively. Quality of circumstances also specifies explicit gradations in how well daily living challenges are addressed. Further, quality of circumstances invites attention to the basis upon which quality standards are based, including both community standards and preferences of home care recipients. For gerontologists who prefer to work with the language of "meeting needs," these refinements are also feasible and desirable. Gradations in the degree to which needs are met can be measured. Distinctions can be made between need as seen by home care recipients and need as reflected by community norms. Standards can also be established that specify how fully public programs should be expected to meet needs.
Questions about the effects of formal home care services upon caregiver burden deserve similar consideration. The introduction of formal home care services does not assure a reduction in informal caregiver effort, because caregivers may simply shift their efforts to other tasks, including the supervision of formal services. In the case of publicly funded programs, the questions about impact on caregivers invite attention to standards. Should public programs be expected simply to provide a level of relief that caregivers find satisfactory? Alternately, should there be a standard of the effort expected of informal caregivers? If so, formal home care services could be evaluated on the extent to which they reduce or eliminate "greater-than-expected" caregiving effort (Caro 1981).
Is the quality-of-circumstance approach too difficult for home care to absorb? Two challenges are involved; both can be overcome. The first is a matter of conceptualization and language. With concerted effort, the field can shift its statement of mission to one that focuses on improvement in the life experiences of people with disabilities. The second issue is technical. I believe that case managers are able to move beyond identifying and addressing the "unmet needs" approach to service planning to one in which they also focus on strategies necessary to enable clients to achieve explicit improvements in their life circumstances. Further, researchers are capable of employing largely objective measures of how well daily living needs are met (Caro and Blank 1988). In addition, we have both technical and political methods for establishing standards for the quality of daily living experiences that we should expect of formal home care services.
Received for publication February 1, 2001. Accepted for publication March 1, 2001.
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