Chapter 1

COMMUNITY-BASED CARE:
CONCEPTS AND DEFINITIONS 

The Priority Expert Panel on Community-Based Health Care: Nursing Strategies met in December 1993 to assess the state of the science, identify research needs and opportunities, and develop recommendations for research on nursing strategies in community-based health care. Addressing research pertaining to both rural populations and urban, underserved populations, the panel adopted an overarching framework of primary health care, encompassing primary, secondary, and tertiary prevention. 

In this chapter, the panel reviews the definitions used during its deliberations. The following concepts are defined: primary health care; primary, secondary, and tertiary prevention; community; community-based health care strategies; and rural/urban. Subsequent chapters present the panel's review of community-based health care strategies for rural and underserved urban populations. 

The panel notes that although it has focused on rural and underserved urban populations, community-based health care is a far-reaching concept applicable to everyone. This concept represents a shift in focus from professional-client dyads to defined populations (e.g., individuals, families, groups) within communities. In such a population-based health care practice, the responsibility of providers is enlarged to include the health status of persons who have not sought care and who may have unmet needs and who may benefit from preventive, health promotion, and disease screening activities. That is, the system of care is responsible for neighborhoods and communities, not just individuals with appointments; this concept implies a link with other community sectors (schools, government, churches, social service agencies, etc.). 

Further, the system must make tradeoffs in allocating its resources among prevention, screening, and treatment, as well as among clients with differing health problems. In this new paradigm, all persons and families should have access to organized community-based health care systems regardless of their economic status, and all health care practitioners, including physicians, nurses, and other health care professionals, should cooperate in providing this care. 

As managed care approaches become more predominant in the health care industry, understanding which care strategies are most effective in assessing and improving the health and well-being of individuals and families becomes ever more important. Noting that nurses and nurse researchers have a critical role to play in this effort, the panel highlights in this report the promise and success of community-based nursing strategies for meeting the needs of the new paradigm. 

Primary Health Care 

Primary health care is an approach to health care that focuses on promotion of health and prevention of disease across the continuum of care. In contrast to primary care, in which the principal focus has been on the professional-client dyad and a client's first contact with medical providers, primary health care is concerned with the health of communities or populations. 

The panel notes that the Institute of Medicine recently initiated a 2-year study of the future of primary care (Institute of Medicine, 1994). The committee conducting this study has adopted a provisional definition of primary care which expands the traditional definition substantially to include many of the concepts incorporated by the panel in its definition of primary health care. 

In the panel's view, primary health care includes: (a) all members of a population having access to health services; (b) individual, family, and community involvement in the identification of health priorities and the planning and implementation of health care services; (c) services that are preventive and health promotive rather than just curative; (d) integration of health development with economic and social development; and (e) attention to clients' culturally acceptable health practices. 

Primary health care encompasses all the attributes of traditional primary care and community-oriented primary care. In addition, primary health care adds public health delivery as well as epidemiological principles. It incorporates the values of equity, justice, and community supremacy (Grimes, 1994). It is a pattern of health care delivery in which community residents and health professionals are partners in achieving the common goal of improved health, and it encompasses all aspects of the community and its health needs. The community, not the individual, is the client. 

According to McElmurry, Swider, and Watanakij (1992), primary health care strategies encourage self-care and self-management. Persons are educated and empowered to use their knowledge, skills, and attitudes to improve their health and the health of their community. Further, the strategy of care is of and for the people in a "bottoms-up" rather than "top-down" approach. Primary health care thus builds on public health and the many public health strategies deployed at Federal, state, and local levels which have been addressed in recent reports on the state of public health in the United States (Institute of Medicine, 1988, 1994). 

Primary health care also requires development, adaptation, and application of appropriate health technology that can be readily used and is affordable. Such an approach also includes dimensions of social and economic development, including the complex interrelationships among a variety of societal factors (e.g., violence, poverty, drug and alcohol abuse, family disintegration, school dropout) to improve a community's quality of life. Attention to emotional and behavioral aspects of a community's well-being also is crucial. 

Continuum of Care. Within this framework, the continuum of care is conceptualized as including health promotion, disease prevention, acute care, transitional care, and long-term services for individuals, families, and communities. This continuum can be viewed as "a customer-oriented seamless system composed of services and integrating mechanisms that guides and tracks individuals over time through a comprehensive network of health, medical, and social services spanning all levels and sites of care, improving health status of target populations" (Vaughan, 1994, p. 3). It includes care provided through organizations that offer universal coverage, such as managed care facilities. 

Ideally, services along the continuum of care are integrated so that there are clear linkages between acute and chronic care and there is shared accountability for outcomes over time and across service sites (Conrad, 1993; Shortell, Gillies, Anderson, Mitchell, & Morgan, 1993). Such an ideal could be implemented and tested in the current restructuring of health care systems to emphasize a more managed care approach to health care delivery (American Academy of Nursing, 1993). 

Adopting the public health model of prevention, one can view the continuum of care as including primary, secondary, and tertiary prevention measures, as described by Leavell and Clark (1965). Primary prevention involves activities such as health promotion and specific protection (e.g., immunizations, nutrition, and lifestyle alterations) aimed at intervening before disease arises in individuals. Secondary prevention measures are aimed at preventing disease and disability in a population through screening, early detection and diagnosis, and prompt treatment of presymptomatic or very early clinical disease. Tertiary prevention measures are aimed at limiting disabilities and supporting rehabilitation; the type of care provided is supportive and restorative and includes chronic illness care. All three types of prevention measures are provided in the continuum of community-based primary health care for individuals who are healthy or have health problems. 

A Paradigm Shift. This definition of primary health care, which focuses on the provision of a continuum of care for individuals, families, and communities, represents a significant paradigm shift from traditional primary care. It requires adoption of a new view of health care on the part of all providers, coordination and communication between and among providers, and new ways of allocating resources. 

The Institute of Medicine's new conceptualization of primary care complements this definition. As presented in its interim report, the Institute of Medicine is redefining primary care to include concepts such as "integrated, accessible health care services," accountability of providers, attention to a wide range of individual needs, development of a long-term partnership with clients, and the broader family and community context of health care (Institute of Medicine, 1994, p. 1). This redefinition of primary care has already been adopted by the Health Care Financing Administration. 

Primary care has been variously defined over time. The Institute of Medicine's new conceptualization builds on these earlier definitions, which emphasize "accessible, comprehensive, coordinated and continual care delivered by accountable providers..." (Institute of Medicine, 1978); community-oriented primary care (Abramson & Kark, 1983); provision of services "...to a defined community, coupled with systematic efforts to identify and address the major health problems of that community..." (Institute of Medicine, 1984, p. 2); and longitudinal, managed care, with coordination and referral (Starfield, 1992). The current Institute of Medicine study is expected to be completed in late 1995. 

In the panel's conceptualization of primary health care and the Institute of Medicine's redefinition of primary care, health promotion and education efforts would be considered part of integrated, long-term health plans. These plans, which would be targeted to individuals, families, and communities, would include attention to social and economic factors (e.g., interpersonal violence, poverty, lack of health insurance) that may compromise health and well-being. 

Plans also would include specific community-based strategies aimed at informing and empowering communities. As suggested by Kretzmann and McKnight (1993), empowerment strategies are those that utilize the assets of a community to improve the health and well-being of its members. That is, the knowledge, skills, and experiences of community members are incorporated into the design and implementation of community programs. The goal is to enable individuals and groups to choose a healthy lifestyle and to support them in assessing their lifestyle changes and caring for family members. 

Traditionally, health care providers have determined how, when, and where health care is provided. By empowering the receivers of care, providers transfer control to clients and encourage their meaningful participation and effective decision making. As noted by May, Mendelson, & Ferketich (1995, p. 27), "The challenge to health experts is to relinquish control over ideas and programs and become consultants and team members...." At the same time, health experts must be able to assess the readiness of individuals, families, and groups to participate in their own health care and to be involved in making decisions regarding their self-efficacy. 

This new paradigm for health care holds promise for reducing the incidence of acute and infectious diseases and for delaying, abating, and ameliorating chronic illness. These effects can be expected to lead to an overall reduction in total health care spending in the United States, which reached $751.8 billion, or 13.2 percent of the gross domestic product (GDP), in 1991 (Letch, Lazenby, Levit, & Cowan, 1992). This expenditure, per capita, is more than double the average health care spending of other developed countries, exceeding Canada, Japan, and Western European nations by 50 to nearly 200 percent (Schieber, Poullier, & Greenwald, 1993). 

In recent years, the share of GDP consumed by health spending in the United States has increased from 5.9 percent in 1965 to 14.3 percent in 1993, and it is expected to increase to 18.2 percent by 2000 (Congressional Budget Office, 1993). These spending increases derive from increases in the prices for medical care services, the volume and intensity of medical services, population growth, and the age of the population (Physician Payment Review Commission, 1994). 

All these increases point to the need to move from an illness-focused system to one emphasizing disease prevention and health promotion. At the same time, individual, family, and community involvement in health care decisions will help ensure that individuals are fully informed and can inform health care providers about their health and wellness, the efficacy of interventions, and the factors involved in maintaining a desired quality of life. Creative public-private partnerships between state and local governments and private organizations offer an attractive possibility. 

New Systems and Roles. In this new paradigm, primary health care teams are comprised of many components, including professionals such as nurses, dietitians, and physicians, as well as other health workers, lay midwives, and community volunteers. Ideally, these teams work inside organized delivery systems, which embrace both the formal health care system and a family's self-care system, along with team members managing the organization of care and the interface between the systems. 

Organized delivery systems have many forms, most of which are rapidly changing as the national health care delivery network undergoes restructuring and reengineering to achieve a more orchestrated form of continual, seamless care. Sys- tems include a variety of formal health care structures such as acute care settings (e.g., hospitals), skilled nursing facilities, home health agencies, public health entities, and managed care organizations. 

Within these systems, nurses serve as the ideal liaison between community volunteers and other members of the team, sharing roles that combine health promotion, disease prevention, and curative and restorative dimensions. Community nursing is expanded to include service to population groups that receive clinical care in a variety of settings and payment for this care through a variety of mechanisms, including universal coverage (e.g., as provided by managed care organizations). And, although this report is focused on rural and urban underserved populations, the tenets of community-based nursing are equally appropriate and applicable to all populations, including those that have access to a wide range of health care services (e.g., through managed care organizations). 

Advanced practice nurses have a special role to play in this new era. The panel confirms the opinion of the American Nurses Association (ANA) that advanced practice nurses have an expanding role in delivering timely, cost-effective, quality health care, especially to chronically underserved populations such as the elderly, the poor, and rural underserved (ANA, 1993). The ANA defines "advanced practice nurse" as an umbrella term given to registered nurses who have met advanced educational and clinical practice requirements beyond the basic nursing education required for all registered nurses (ANA, 1993). Generally included under this umbrella of advanced practice are nurse practitioners, certified nurse midwives, clinical nurse specialists, and certified registered nurse anesthetists. 

For this report, the panel adopts a more encompassing definition. Within the context of community-based health care strategies, "advanced practice" is thus broadened to include all registered nurses with a master's degree in nursing; this includes, for example, nurse administrators and rural nurse generalists who play a key role in community-based primary health care. 

Community-Based Health Care

Community-based health care incorporates the five elements of primary health care adopted by the panel. It is focused on community settings and populations and includes coordination and interface with institutional acute or chronic health care agencies. A community is a neighborhood, entire town, school, prison, or worksite, or may be groups of persons that share similar characteristics such as lifestyle, culture, or religion (e.g., Amish enclave, monastery). 

Community health care settings may include churches, mobile clinics, and senior centers, as well as large, managed care organizations. Recipients may be individuals, families, and/or total communities (e.g., a school, church, worksite, prison, village, town). Community may be defined differently within each grouping; it is a shifting notion that is recognized differently by different persons. 

Community-based and community-wide care are two terms that have been used in different ways and interchangeably. The different uses of these terms have been articulated (Chamberlin, 1988), with "community-wide" taken to mean that an entire community is involved and has services available to it and "community-based" taken to mean that a segment or subset of a population is designated as the focal, or target, group. This definition of "community-based" has been considered too limiting. In this report, the panel adopts use of "community-based" to imply broad-based involvement and availability of services to all community members, including those to whom an intervention may be especially targeted. 

For any setting or population, the major defining element of community-based care is the involvement of clients (i.e., the population to be served). Also essential is a community assessment of health indices and environmental and other factors that affect health. Central to the assessment is a focus on the community as an aggregate, determination of priorities at a local level, and encouragement of high levels of participation by the public constituency in the entire process (American Public Health Association, 1991). 

Additional elements of community-based health care are equal partnership between public agencies and the population(s) to be served which epitomizes empowerment and local development of priorities, interventions, and evaluation plans that are sensitive to the needs of the population(s) served. Community-based health care further incorporates interdisciplinary teams of providers in which nursing is centrally involved. All of these elements are similar across health care strategies, including those with a special focus (e.g., prenatal care) and those with broader aims (e.g., lowering cholesterol levels throughout the community). 

Thus, community-based health care strategies are defined by both process and outcome. They must be designed to accommodate a variety of communities, ranging from local villages, resident facilities, counties, and urban cores all of which may exist in different settings such as rural, urban, or suburban locales. Within these contexts are varying populations that have specific characteristics, health states, levels of risk, social arrangements, and cultural values. Particular populations at risk may include minority groups, low-income persons, children, and older persons. The unique aspect of these strategies is that the assessment process, intervention plans, and outcome measures are at the aggregate (community) level, although they may be targeted to particular populations in need and may include individuals and families as units of analysis. 

Challenges in Delivering Community-Based Care

Community-based health care strategies are challenged by a number of factors, which include the availability, accessibility, affordability, appropriateness, adequacy, and acceptability of the care delivered. These fundamental components, which build on the concepts included in primary health care and should be taken into consideration in planning successful community-based care, have been described by Krout (1986, 1994) and modified by the panel as follows: 

Availability -the number, types, range, and frequency of health and social services offered. 

Accessibility - the ability of persons to make use of services, encompassing distance, effort, and cost for obtaining a service, as well as awareness of the services. Accessibility includes attention to qualities such as the comfort level of persons entering the health care system. 

Affordability - the ability of consumers to pay for services and the mechanisms to secure payment for programs (e.g., voluntary contributions or fees). 

Appropriateness - the ability of the health care program to provide the services that are needed, desired, and performed. 

Adequacy - the ability of a program to allow persons to enter at the levels they need, to not offer too little or too much, and related issues. 

Acceptability - the congruence between the service and the expectations, attitudes, values, culture, and beliefs of the target population. Acceptability is paramount, for if health care is not acceptable to the target population, the services provided will not be effective. 

Culturally relevant health care that is available, accessible, affordable, appropriate, adequate, and acceptable to all community members is needed, particularly for individuals, families, and groups that are vulnerable and underserved. Community-based health care strategies grounded in the framework of primary health care are characterized by well-formed partnerships or linkages with and among community members and health care providers and insurers. 

The community is involved at all levels of interaction. Indeed, a hallmark of community-based health care is that the members of the community participate in collaborations in which the community is empowered to take active leadership in setting goals, developing programs, and making decisions about expected outcomes for community members. The aim is to assure a continuity of care, from preventive to restorative care, based on the social, economic, and cultural factors of the community. 

The interdependence of individuals, families, and their environment is recognized as an important component of community-based strategies. Health care must be provided and assessed within this context. 

Rural/Urban: A Continuum

There are no concise and universally held definitions of urban and rural. Although several definitions are commonly used, they tend not to capture adequately the differences between groups. In modern America, the distinctions between urban and rural are blurring as the population migrates to rural settings in search of the mythical "country life" and economic crises force rural dwellers into more urban settings in search of employment. Technological advances now allow previous urban dwellers to live in rural communities and continue to be employed in complex organizations located in metropolitan areas. 

Social conditions, which are often closely linked with health and illness, are also now more universal. Problems such as poverty, drug abuse, violence, and crime, once thought to be urban, are now recognized in rural America, and many effects of poverty are similar for those living in inner cities and in remote rural areas (e.g., Native Americans living on very rural reservations). 

Still, the population is dispersed along a continuum of rural and urban areas, as defined by population density. And place of residence still serves to focus thinking and scientific inquiry on critical social, cultural, and health issues that are more prevalent in one setting than in another. For example, rural and urban residents may perceive health differently, and certain views of health may be more prevalent among rural dwellers (Long, 1993). Weinert and Long (1987) report that, in ethnographic interviews, rural dwellers defined health as the ability to work. Ross (1982) and Lee (1989) also report that rural residents were more likely than urban dwellers to associate health with the ability to work and perform daily tasks. 

Such urban/rural differences in health, health beliefs, and health practices, which are being identified and empirically validated, show that there are some key subcultural distinctions based on place of residence. Thus, in any discussion or scientific investigation of urban or rural characteristics, beliefs, or behaviors, the similarities and differences between urban and rural residents must be carefully considered. The heterogeneity within rural groups as well as urban populations also must not be overlooked. 

Clearly, more precise definitions of both urban and rural are needed for research, policy making, and the distribution of resources. For the purposes of this report, the panel considers urban and rural as anchor points on a continuum of place of residence. Although rural and urban populations and strategies of care are discussed separately in this report, the panel recognizes that the distinctions are, for the most part, not absolute, that there are many cross-cutting issues both between and within groups, and that life today in the United States is not lived in isolation from the larger context of the nation and the world. 

Rural 

An acceptable definition of rural has eluded scholars, and resolution of the controversy over "what is rural" does not appear imminent (Coward, Miller, & Dwyer, 1990; Flora & Christenson, 1991). It is not that people deny the existence of rural areas in modern America, but that academicians, health planners, and policy makers have spent a great deal of time and effort arguing over the precise boundaries that separate rural from nonrural places. The failure to define clearly what is meant by "rural" makes it more difficult to forge cohesive action coalitions for rural health, describe the distinctive health care needs of "rural" populations, and find solutions to the problems of "rural" America (Coward et al., 1994). 

Significant amounts of Federal health planning, resource allocation, and data collection are based on two frequently used classifications: rural/urban and metropolitan/nonmetropolitan. The Bureau of the Census (1987) designates residents in towns of 2,500 persons or more as urban; those not classified as urban are considered rural. The Office of Management and Budget (OMB) (1983) differentiates metropolitan from nonmetropolitan residents based on metropolitan statistical areas (MSA). An MSA is a city of 50,000 or more residents or an urbanized area with at least 50,000 persons that is part of a county or counties having a population of at least 100,000. 

Conclusions about health can differ substantively depending on which of these definitions is used. Consider, for example, the determination of health care needs for elderly persons in the United States. If OMB's definition is used, these needs will be based on the view that elderly persons comprise a larger proportion of the population in nonmetropolitan areas than of that in metropolitan areas, and resources and services will be ascribed accordingly. 

If, however, the Bureau of the Census' definition is used, the converse is true: Elderly residents comprise a greater proportion of the residents in urban areas than of those in rural areas (Hewitt, 1992). Again, resources and services will be allocated accordingly. Many decisions important for elderly persons in the United States are being made based on these very different definitions, with very different results. 

Moreover, these two dichotomous classifications only address the distribution of people in space. Important differences between urban and rural areas and wide variations within rural areas also need to be understood (Hewitt, 1992). Modern America is simply too diverse to be separated into two homogeneous parts (Coward, McLaughlin, Duncan, & Bull, 1994). These dichotomies frequently include as much within-category variation as between-category variation. 

When residence is conceptualized as a continuum rather than a dichotomy, the differential dilemma shifts from agreeing on the boundary between two categories (where rural stops and urban begins) to defining the underlying concepts that differentiate one point on the continuum from another. Within health services research, three concepts have become dominant in debates and discussions: (a) the total number of persons in a geographic area, (b) the distance of a place from a larger metropolitan service area, and (c) the density of the population dispersion (i.e., population size and space) (Coward et al., 1994). 

Sparseness of population is one characteristic that ranges across the continuum. For example, some areas are frontier, with an extremely limited size and great distances between population concentrations. Towns in these areas may have fewer than 1,000 persons, and distances to health care facilities and providers may be extreme. In other areas, distances might not be as great, but transportation may present greater challenges because the terrain is mountainous or has other natural barriers. 

The heterogeneity of rural populations leads Castle (1993) to conclude that "rural problems are too diverse and complex for a highly centralized approach" to public policy making "unless it is combined with a capacity to reflect local conditions and circumstances." Although "rural" continues to be a useful shorthand for referring to residential settings that have small numbers of people, are sparsely settled, and are physically remote, it has turned out to be a very imprecise tool for the purposes of research and planning (Coward et al., 1994). 

In this report, the term rural is used in the generic sense, rather than in a precise definitional sense. It is used to refer to that end of the residential continuum that contains small towns and open country, to places with small populations that are widely dispersed and remote from large metropolitan areas. In this report, rural does not refer to suburbs or small cities in close proximity to large urban centers. 

Urban

Urban is generally defined according to the population size of cities. Some urban scholars agree that development of an all-inclusive definition for city is a futile and fruitless exercise. Byland (1988) suggests that a set of guidelines is needed "which can, in any particular context lead us to informed discussion" (p. 10). 

Three interrelated characteristics were identified early by Wirth (1938) and are still useful: (a) population size in relation to (b) population density and in relation to (c) sociocultural heterogeneity. Wirth (1938, p. 4) noted that if "density is not correlated with significant social characteristics it can furnish only an arbitrary basis for distinguishing urban from rural communities." 

Byland (1988) adds three additional characteristics of urban: (a) complex social and political organizations; (b) a broad range of specialized occupational roles; and (c) administrative, political, and economic articulation with surrounding communities with which various types of goods and services are exchanged. 

Using these characteristics, two types of urban settings can be profiled: large metropolitan areas, and small cities. Large metropolitan areas are characterized as having a population of at least 500,000 persons, surrounding suburban or "bedroom" communities, and defined residential locations with a high population density that exhibit characteristics of being vulnerable and underserved. 

Other characteristics of large metropolitan include: (a) disproportionately low income, poverty, and other socioeconomic indicators, such as low education and adult literacy levels and unemployment and/or low-level and low-paying employment status; (b) high presence (at least 50 percent in specific residential locations) of ethnic and/or racial minorities; (c) high rates of poor health care indicators (high infant and adult mortality and morbidity rates, low birth rates); (d) low levels of availability of, or accessibility to, health care services; (e) high proportion of children and elderly; and (f) the presence of homeless persons. 

Small cities, regardless of population size, are characterized by (a) a population density of at least 1,000 persons per square mile; (b) a level of sociocultural heterogeneity, as indicated by at least two distinctly marked socioeconomic groups and two distinctly differentiated ethnic or racial groups, with the smaller group or groups comprising at least 20 percent of the total population; and (c) diversity in occupational structure (as measured by the presence of one or more major industries, having more than half of its labor force involved in nonagricultural activities, and the presence of at least five professional occupational groups) and in its administrative (methods of governing), political (minorities present or considered in local political activities), and social (household, associations, and institutions) organizations. 

Conclusion 

In addressing community-based health care, the panel has defined several key concepts: primary health care; community and community-based health care; and rural/urban continuum. The emphasis is on meeting the health care needs of diverse populations in different settings through effective provision of primary, secondary, and tertiary preventive services. The role of the family within this context of care is an important consideration. 

Community-based health care demands innovative and variable strategies reflecting the populations and settings served. For both rural and urban areas, the research literature includes a number of descriptive and exploratory studies, as well as promising interventions that could be expanded, applied, and tested as comprehensive, community-based strategies meeting all the requirements discussed above. For rural communities, strategies tend to be broad-based and directed toward a variety of health needs and beliefs among community residents. For urban communities, strategies tend to be categorical, targeted to specific health needs of various racial and ethnic groups. The organization of the panel's discussion in the chapters that follow reflect these differences. 

In chapter 2, "Rural America: Challenges and Opportunities," the focus is on developing broad, community-based strategies that address the health care needs across populations within rural settings. In chapter 3, "Urban Populations: Needs and Directions," the focus is on designing community-based strategies for specific populations. There is no intent in this report to include all populations in urban and rural settings. Rather, the panel references select groups for which community-based models, considered as strategies, have been reported and where there is unmet need. The research opportunities and directions for future research identified by the panel are based on a review of these reported strategies. 

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