JournalofPrimaryPrevention,6(2),Winter,1985
C o n t i n u i n g Constraints to a P r e v e n t i v e l y - O r i e n t e d Medical Care S y s t e m in the U n i t e d States ROBERT H A L P E R N ABSTRACT: In this paper the author focuseson the structure of, and trends in, our na-
tion's medical care system, as they relate to preventive maternal and child health needs. Continuing barriers to appropriate utilization of medical care, effects of recent federal actions, and possible directions for future change are discussed. This paper focuses on the structure of, and trends in, our nation's medical care system, as t h e y relate to preventive m a t e r n a l and child health needs. Two recent studies have analyzed in great detail the n a t u r e and effects of our system of m a t e r n a l and child health care (Harvard Child H e a l t h Project, 1977; Select Panel for the Promotion of Child Health, 1981). In this paper the author discusses findings of those reports t h a t seem most relevant to preventive health care strategies, and describes other studies t h a t illustrate some of the major issues raised by the findings. The author will summarize the effects of recent changes in federal health policies and budgets, as they appear to be affecting families in different sectors of society. As is the case with m a t e r n a l and child health status in the United States, the medical care system presents a portrait of enormous progress in recent decades, along with a n u m b e r of persistent weaknesses and limitations. T h a t progress has been most notable in the areas of prevention of infectious and communicable disease, detection and m a n a g e m e n t of genetic abnormalities, in utero and after birth, management of medically high risk neonates, and application of simple technologies to m a n a g e problems like chronic otitis media (myringotomy tubes) and diarrhea (oral r e h y d r a t i o n packets). There has been significant progress in assuring the availability of at least some measure of medical care to low income families in m a n y settings. Persistent weaknesses and limitations of our system of medical care appear to fall into four categories: continued differences in the interpersonal quality of care based on ability to pay, and ethnic or racial background, continued geographic mal-distribution of providers, affecting inner city neighborhoods and m a n y r u r a l communities, continued systemic inability to address sociocultural and behavioral factors 115
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affecting appropriate utilization of available care, and continued systemic inability to work closely with families and to prevent and screen for health problems. George Silver (1981), a long time provider and observer of child health services in the United States, notes: The overwhelming impression upon reading the literature is that social factors are critical determinants of the use of prenatal care and preventive services for children; that these social factors operate despite the provision of and ready access to medical care service; that these social factors themselves may have an important influence on the health of children; that technological excellence is useful but not decisive in reducing maternal and infant morbidity and mortality. (p. 844)
Continuing Barriers to Utilization
Using medical care services preventively and diagnostically at appropriate points in one's family's life appears to be a habit, or a lifestyle. Many families do not see the medical care system as a routine part of their n a t u r a l support system, and thus use it in crisis-oriented, episodic ways (Granger, 1979). The specific reasons for such attitudes toward the medical care system vary. For example, average waiting time and transportation to see a physician, one determinant of utilization, differs considerably among families: it ranges from 43 minutes for non poor families, to 66 minutes for the poor generally, to 81 minutes for those on welfare. Although there is evidence t h a t members of different ethnic, educational and socioeconomic status groups rate the importance of various health measures such as immunization and screening equally, different groups do not use preventive care equally (Fuchs, 1983; Newberger, Newberger & Richmond, 1976). One explanation for the discrepancy can be found in structural features of the medical care system. Quesada and Heller (1977), for example, examined barriers to medical care utilization among Mexican-Americans in Texas. They found: perceptions t h a t institutional supports and services were unpredictable, unstable and inaccessible; significant communication problems between families and providers; traditional patterns of help-seeking behavior t h a t were very strongly rooted--specifically, t u r n i n g to kin and folk healers for cures; and an inability or unwillingness within the medical care system to adapt to the special demands of serving a culturally different population. Exacerbating such barriers was the
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fact that 24 of 28 counties in which Mexican-Americans live in significant numbers in Texas are underserved by physicians, nurses, dentists, pharmacists, and occupational therapists. The findings from a study by Kline (undated) illustrate how personal factors and institutional factors interact to prevent appropriate utilization of medical care. She assessed prenatal health care decision-making among 208 rural black women in six Alabama counties. Each woman was interviewed early in her pregnancy and one month after delivery. Data were also gathered from medical records. For purposes of analysis the population was divided into a group reporting a high number of symptoms and a group reported a low number, to examine utilization patterns based on preventive motives (low symptom) and therapeutic concerns (high symptom). Kline found in this population: (1) significant underutilization of prenatal services, with slightly more than 50 percent not initiating prenatal care until the second trimester or later; (2) a substantial number of women reported experiencing potentially serious symptoms (headaches, swollen extremities, dizziness, blurry vision, painful urination) and not reporting them to a physician; (3) generally inadequate prenatal health knowledge, especially a tendency to underrate the seriousness of problems, with knowledge not increasing with previous pregnancy experience; (4) a strong tendency for high-symptom women to refer themselves to family and friends for help, rather than to physicians. Limited knowledge interacted with other situational barriers to affect use. Most dramatically, segregated waiting rooms were still used by 50 percent of the physicians in the counties involved, a situation psychologically and socially demeaning to families. Transportation problems in the low risk group, and in both groups perceived happiness of the father and actual happiness of the mother with the pregnancy, strongly influenced utilization. As a result of all these factors 25 percent of the women had delivery complications, and 30 percent of the infants experienced difficulties at birth. Even in situations theoretically more attractive to users than those found in the above Alabama counties, availability of services has not usually been enough to ensure their utilization. For example, Nutting, Barrick, and Logue (1979) examined the effects of a special, high risk maternal and infant health clinic established on an Arizona Indian reservation to serve high risk, hard-to-reach families. They report that "the segment of the prenatal population who derived the major benefit from the MCH program was that group who sought and received rea-
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sonably good care prior to the program and who according to the risk criteria were least likely to benefit from the program" (p. 278). This effect was found despite careful identification of the high risk population and reportedly aggressive outreach. Constraints to utilization of medical care based on economics and lack of availability of services appear to be a much less important factor than historically in the United States. Medicaid funds, Title V programs (such as Maternity and Infant Care Projects, Children and Youth Projects, WIC, Improved Pregancy Outcome Projects, and so forth), and Community Health Centers, have formed a valuable if somewhat fragmented network of support to many poor families. Thus, reports summarizing progress as recently as 1981 indicate that parents of children on Medicaid identify some regular source of medical care as frequently as those of non-poor children, though a much higher percentage of both those groups report regular sources of care for their children than those poor families not eligible for or utilizing Medicaid (Budetti, Butler, & McManus, 1982). These same reports point out that only 48 percent of children in families with incomes below the poverty level are on Medicaid. And among some groups, such as rural blacks and Mexican-American migrants, only 20 percent are on Medicaid. As of the late 1970s the poor generally were still eight times more likely than the non-poor to have no regular source of medical care (Budetti, Butler, & McManus, 1982). Medicaid was originally intended to increase access to private, especially office-based, medical care among the poor. But the use of hospital-based clinics among the poor has actually increased among Medicaid eligible families in recent years, especially for children under 6 years of age (Dutton, 1981). It has been noted that poor families tend to over-use emergency facilities, but the evidence available does not support that supposition (Gortmaker, 1981). Nonetheless, because public and hospital-based clinics tend to be significantly less convenient to use (due to greater waiting time, bureaucratic barriers to usage, and related factors) and provide more impersonal care, they tend to discourage what has been called "patient-controlled" care. Such care is usually preventive. It includes routine prenatal, well-baby and wellchild care, which are usually up to family to initiate and follow through on. Medicaid restrictions in several states have been such that many intact low income families who cannot afford to pay for their own prenatal and well-baby care are ineligible for Medicaid assistance. In particular, poor families ineligible for AFDC because of the presence of two
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parents and/or some earned income, have frequently been ineligible for Medicaid. In 1979, Medicaid programs denied prenatal care for first time mothers who were Medicaid-eligible in 21 states (Homer, 1980). Many low-income working families have private health insurance that pays for hospitalization b u t not office visits, in particular prenatal care. (As this paper was being revised [in the summer of 1984] the Deficit Reduction Act of 1984 was passed by Congress and signed by President Reagan. This Act included an improvement in Medicaid known as CHAP, the Child Health Assurance Program. Under the provisions of CHAP states will be required to provide Medicaid to all poor children up to age 5 and most poor pregnant women, regardless of AFDC eligibility.) Nevertheless, many physicians refuse to see Medicaid-enrolled patients. In one southern state in two-thirds of the counties there is no physician who will accept Medicaid as a basis for payment (Miller, 1984).
Effects of Recent Federal Actions Recent (1982-1983) federal health care budget reductions threaten gains in access and availability, and have begun to affect the nature and amount of preventive, diagnostic and curative services available to and used by poor families. Prenatal and delivery services and preventive care for infants and children have borne a disproportionate share of federal cutbacks. One recent survey (Rosenbaum & Weitz, 1983) found that as a result of federal budget cuts every state has reduced its Medicaid program for women and children, by either cutting back services or further restricting eligibility (CHAP should remedy the latter); 47 states have eliminated some Title V maternal and Child Health block grant programs, and 465,000 children and women of childbearing age have lost services at Community Health Centers that have been closed. Most states were forced to cut back in several areas. The following illustrate cutbacks in specific areas: Alabama closed 6 maternity and infant care projects, affecting 10,000 pregnant women. In Florida, 23,000 children were eliminated from Medicaid. Illinois restricted Title V well-child care funds to children under one. Kentucky decreased funds for its Improved Pregnancy Outcome Project, eliminating 584 of 1,168 women potentially served. New Jersey reduced its visiting nurse programs by 85 percent. An even more recent report (Miller, 1984) describes the effects of a $10 million budget reduction in neighborhood-based comprehensive
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health services in Denver: 300 staffpositions were eliminated, all wellchild clinics were discontinued, there were cutbacks in nutrition counselling, transportation, outreach, social work services, family health services and dentistry, and highest priority for continuing services was given to reimbursable services and critical care for acute illnesses. It is probably too early to know the effects of such cuts in patterns of medical care utilization among poor families. State health departments and the federal government have demonstrated only moderate interest in monitoring possible effects (Miller, 1984). The cuts will surely make preventive services such as prenatal and well-child care more difficult to gain access to, less convenient and even less personal to use. Whether they will directly affect health status of women and children remains to be seen. Studies suggest that major changes in the health of populations have been attributable more to major social and economic changes as they affect public health conditions and lifestyle than to short-term changes in the quality or availability of medical care (Fuchs, 1974; Mechanic, 1982). The latter has had a clear but discrete influence, the former a pervasive one.
Families With Special Needs: The System's Response There are large numbers of American families, both poor and nonpoor, whose health-related treatment or support needs do not fit the standard components of our medical care system. Families whose children have behavior or developmental problems, families in which parents may be overwhelmed by day-to-day pressures, and/or may be neglecting or abusing their children, young, socially isolated parents who have just brought a baby home from the hospital, and families in small, rural communities, all have needs that do not seem to fit our approach to providing medical care. The stresses and barriers these families experience prevent them from effectively managing their own family health, and also from using formal medical care appropriately. Chamberlin (1982), Kempe (1980), and others have argued that our medical care system is especially weak in identifying and addressing psychosocial stress in family functioning, particularly among the poor. Pediatricians, for example, receive little training and spend little office time in the identification, diagnosis and family management of behavioral problems in children. There is evidence that "anticipatory guidance" by pediatricians can have a significant effect on parenting behavior (Aronson, 1981). Yet Chamberlin (1982) cites a study in
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which it was found that an average of 90 seconds was spent by the pediatrician in anticipatory guidance with parents during well-child visits. Starfield (1977) has pointed out that the "presenting problem" or reason for a visit to a physician frequently masks others that would be recognized if more was known about the family.
Outreach: Potential and Actuality Some of the constraints on adequate health self-care and appropriate utilization of formal medical care, especially those constraints related to geographic or social isolation and day-to-day coping problems, suggest a need for the medical care system to reach out to provide care and support. The "outreach" component of our medical care system has never been prominant, and has suffered disproportionately from recent budget cuts. Nonetheless, it remains a component of the system with significant undeveloped potential. Outreach can take many forms, and can have a number of goals. It can be focused on promoting community involvement in health maintenance, counselling, information and referral, active linkage to services, health education, health surveillance and screening, actual treatment, following through with phsycian instructions, and helping overcome cultural and linguistic barriers (Beauchesne & Mundel, 1977). Approaches to outreach have included nurses and trained paraprofessionals doing door-to-door canvassing and/or conducting home visits, establishment of small community clinics, and the use of mass media. Almost all outreach effort has been conducted by the public health sector, a few health maintenance organizations, or community-based groups. Evidence on the effectiveness of outreach programs that have been attempted is moderately positive. In one review of five programs it was found that outreach was clearly effective in enhancing appropriate utilization, especially of preventive care, by those families already inclined to use medical services; it was less clearly effective with nonusers (Beauchesne & Mundel, 1977). Another study found that hospital-based nurses who conducted outreach were effective in increasing utilization of well-baby care among low income families in Rochester, New York, but that the effectiveness of outreach was mediated by prior experiences with such care, the father's attitudes, and parity (Hoekelman & Zimmer, 1975). Recent reviews of early childhood home visiting programs with health-related goals have noted the effectiveness of such programs in providing surveillance of infant
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health and growth, identifying potential child abuse and neglect, and encouraging use of well-baby care (Chamberlin, 1980; Kempe, 1980). Colombo, Freeborn, Mullooly, and Burnham (1979) describe a program of outreach using specially trained paraprofessionals to increase poor families' use of preventive services for their preschool children. "Neighborhood health coordinators" were used by the Kaiser-Permanente Medical Care Plan in Oregon to visit and explain to parents the value of early screening and periodic examination of young children. Using baseline utilization rates as a reference, the authors found a 55 percent increase in utilization of preventive services by families contacted by outreach workers. In the late 1960s and early 1970s the problem of under-utilization of available services of all sorts was seen as an important one. Even today, under-utilization often exists side by side with lack of access or availability. Domke and Coffey (1966) described a program in Allegheny County, Pennsylvania, utilizing neighborhood health aides to conduct door-to-door interviews, inquiring whether families are linked into and using appropriate public health services. They found that the aides, carefully selected as natural leaders, and carefully trained and supervised, were effective in identifying families in need of particular services but not utilizing them, in identifying the presence of untreated health problems, and in helping families decide to seek medical care. For example, the 1,800 home contacts turned up 340 cases where curative health services were needed. In a variation on outreach, Kent and Smith (1967) described a program developing a role called "neighborhood representatives," who were to interpret the values, community-expressed needs, and so forth, in relation to medical care, to local providers. The goal was to improve community attitudes toward, and thus utilization of available services. A key assumption was that the medical care system could be made more useful if it accommodated itself to the lifestyle of local neighborhoods. The representatives played a number of roles: service expediter, neighborhood organizer, patient advocate. They accompanied families to appointments, relayed complaints to providers, and established a lay health council. Using some local neighborhoods as treatment, others as control, it was found that treatment neighborhoods had a 40 percent higher utilization rate of various clinic-based services. Much has been made of the significantly greater success European, especially Scandinavian, medical care systems have had in reaching out to serve families who are at psychosocial and medical risk, and who do not use available services for various reasons. In Sweden, for exam-
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ple, public health nurses are assigned a new caseload for well-child care home visiting of 50 children a year, building over five years to a total caseload of 250. Yet even in countries with extensive outreach it has proven difficult to assure appropriate utilization. Sweden, aside from well-child care outreach, has a universal system of free pre- and post natal maternity care, provides a range of childbirth and parenting education activities, and has regular home visiting nurses. Yet there is evidence that the highest risk families in S w e d e n - - b y both medical and psychosocial criteria--continue to use preventive and well-child services least, and least appropriately (Sandgren, 1981).
The Need to Integrate Elements of the System K a r k (1981) has argued that outreach efforts must be closely linked to epidemiological survey and clinic-based services, in a total, integrated program that he calls community-oriented primary health care. He argues that the commonly found fragmentation among various components of a total medical care s y s t e m - - p r e v e n t i v e and curative care, clinical services and public health activities--constrains the ability of that system to influence community health as a whole. Those families who do not actively seek out the elements of that fragmented system are not integrated into it. K a r k argues that there should be a natural flow of people into easily accessible clinics, and a like flow of providers out of the clinic into the neighborhood. He argues that there should be a sufficient number of "meeting points" between particular services, and services and community. Providers should take responsibility for the health of a population. K a r k tested these ideas in a demonstration effort in Kiryat Yovel, a neighborhood of Jerusalem. Health teams were formed who were trained to provide both clinical services and conduct public health activities. The program reported a significantly reduced incidence of a number of key health problems identified by the team: anemia in pregnancy, asymptomatic bacteriura in pregnancy, and cigarette smoking. It also contributed to an increase in breast feeding and longer child spacing between births. Silver (1978) has examined the potential for greater integration among discrete elements of the American medical system, especially preventive and curative care. He has found that efforts at integration have not been and are not likely to be successful. Physicians, he concludes, are not trained for, are not interested in, do not believe in, and
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most important do not have the economic incentives to undertake prevention. Evidence for the efficacy of most kinds of prevention activit i e s - b e y o n d child immunization and prenatal c a r e - - i s certainly not clear-cut. Early and periodic screening is an example of an activity for which the benefits have not been demonstrated to clearly exceed the costs in h u m a n and fiscal terms. But, the lack of evidence on efficacy for prevention activities like comprehensive developmental screening m a y be due to their lack of connection to a larger process, in which problems identified are automatically followed through on. The fee-for-service basis of most payment to physicians is a major constraining factor to greater focus on prevention activities, whether screening, anticipatory guidance, or other. Further, preventive services are not covered by most private third-party insurers. But it is probably the continued skepticism of medical training, certification, and professional organizations that contributes most to a professional climate not conducive to prevention activity. For example, Quesada and Heller (1977) report that physicians in Texas who attempted to work for straight salaries in clinics for the poor faced reprisals from local affiliates of the Texas Medical Association. These included lost patient referrals, ostracism by peers, and harassment by review boards. As another example, only a few medical schools train their pediatric students to conduct developmental assessment beyond the physical exam. The American Academy of pediatrics (1977), perhaps the most sensitive of professional medical groups to prevention concerns, points out that: Pediatricians currently practice preventive child health care because they are firmly convinced of its efficacy, although no comprehensive documentation of the value of preventive child health care has ever been made. There is little or no scientific evidence for some of the procedures currently suggested for and accomplished during well-child visits. (p. xxx) In an article entitled "The Perils of Prevention," Eisenberg (1977) argues that most of the prevention health problems that could be solved through clear-cut technological advances have been solved. Vaccination against poliomyelitis is the paradigmatic example of such problems. Many of the remaining problems, he argues, are those that will require basic changes in personal and social values, behavior and lifestyle. The Select Panel for the Promotion of Child Health (1981)
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points out that a growing proportion of problems in maternal and child health are "rooted in the complex life situations of families" (p. xxx). Should biomedical resources be utilized to address these current prevention prolems, and, if so, how? The question of how much attention should be paid to prevention, especially in the area of maternal and child health, cannot ultimately be just a scientific one. Birch (1970) has noted that it m a y not be appropriate to ask as a scientific question "What is the best form in which health services may be delivered to a community?", because the answer to that question requires us to address a number of fundamental political and social questions: Best for whom? In whose terms? With what objectives? In the United States we have built a technologically powerful medical care system. But this system has by and large avoided assuming responsibility for many community health problems, especially those rooted in the social, economic and behavioral aspects of community health. It is a system best suited to those who have the skills and financial resources to help themselves. Many observers of our medical care system doubt that there will be a significant shift in orientation in the near future. It thus remains for the myriad of community-based organizations, serving families in diverse ways related to health, to develop technologies for working in areas receiving less attention from the formal medical care system. These areas include building families' capacities to help themselves through the formal system, and to manage their own family health in the home. Also, although categorical services are usually identified with fragmentation and discontinuity, they may be the only means in the near future of earmarking public resources for women and children. If so, the current trend toward mingling health care funds at federal and state levels should be reversed.
References American Academy of Pediatrics, Ad Hoc Committee of the Legislative Issues Committee (1977). Value o f preventive child health care. Evanston, II: Author. Aronson, S. (1981). The health needs of infants and children under 12. In Better health for our children: A national strategy. Report of the Select panel for the Promotion of Child Health. Vol. 4. Washington, DC: U.S. Public Health Service. Beauchesne, D., & Mundel, D. (1977). Determinants of children's health services. In Developing a better health care system for children. Harvard Child Health Project. Vol. 3, Cambridge, MA: Ballinger. Birch, H. (1970). Research issues in child health: Some philosophic and methodologic issues. Pediatrics, 45, 874-883.
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Budetti, P., Butler, J., & McManus, G. (1982). Federal health program reform: Implications for child health care. MiUbank Memorial Fund Quarterly: Health and Society, 60, 1, 155-181. Chamberlin, R. (1980). Conference exploring the use of home visitors to improve the delivery of preventive services to mothers with young children. Washington, DC: Proceedings of a conference sponsored by the American Academy of Pediatrics. Chamberlin, R. (1982). Prevention of behavioral problems in young children. Pediatric Clinics of North America, 29, 239-247. Colombo, T., Freeborn, D, Mullooly, J., & Brunham, V. (1979). The effect of outreach workers' educational efforts on disadvantaged preschool children's use of preventive services. American Journal of Public Health, 69, 465-467. Domke, H., & Coffey, G. (1966). The neighborhood-based public health worker: Additional manpower for community health services. American Journal of Public Health, 56, 603-608. Dutton, D. (1981). Children's health care: The myth of equal access. In Better Health for our children: A national strategy. Report of the Select Panel for the Promotion of Child Health. Washington, DC: U.S. Public Health Service. Eisenberg, L. (1977). The perils of prevention: A cautionary note. New England Journal of Medicine, 297 1230-1232. Fuchs, V. (1974). Who shall live? Health, economics, and social choice. New York: Basic Books. Fuchs, v. (1983). How we live. Cambridge, MA: Harvard University Press. Gortmaker, S. (1981). Medicaid and the health care of children in poverty and near poverty. Medical Care, 19, 567-582. Granger, R. (1979). Health care as a family support system. In International year of the child: Child advocacy. Proceedings of a Conference at Yale University, New Haven. Harvard Child Health Project. (1977). Volumes 1-4. Cambridge, MA: Ballinger Publishers. Hoekelman, R., & Zimmer, A. (1975). Utilization of available well-baby care by indigent population groups. In R. J. Haggerty, et al. (Eds), Child health in the community. New York: Wiley. Horner, M. (1980). The quality of American life in the eighties. Washington, DC: President's Commission for a National Agenda for the Eighties. Kark, S. (1981). The practice of community-oriented primary health care. New York: Appleton Century Crofts. Kempe, H. (1980). Approaches to preventing child abuse: The health visitors concept. In L. Williams & L. Mony (Eds.), Traumatic abuse and neglect of children at home. Baltimore, MD: Johns Hopkins. Kent, J., & Smith, H. (1967). Involving the urban poor in health services through accomm o d a t i o n - the employment of neighborhood representatives. American Journal of Public Health, 57, 997-1003. Kline, A. (undated). Health decision-making among rural, black pregnant women in Alabama. Tuscaloosa: University of Alabama, Department of Community Medicine. Mechanic, D. (1982). Disease, morality and the promotion of health. Health Affairs, 1, 28-39. Miller, C. (1984). The health of children: A crisis of ethics. Pediatrics, 73, 550-558. Newberger, E., Newberger, C., & Richmond, J. (1976). Child health in America: Toward a rational public policy. Milbank Memorial Fund Quarterly. Summer, 249-298. Nutting, P., Barrick, J., & Logne, S. (1979). The impact of a maternal and child health care program on the quality of prenatal care: An analysis by risk group. Journal of Community Health, 4, 267-279. Quesada, G., & Heller, P. (1977). Sociocultural barriers to medical care among MexicanAmericans in Texas. Medical Care, 15, 93-101, Rosenbaum, S., & Weitz, J. (1983). Children and federal health care centers. Washington, DC: Children's Defense Fund.
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Sandgren, B. (1981). Integration between the education sectors and the health and welfare sector in the context of policies for children. In Children and society. Paris: OECD/CERI. Select Panel for the Promotion of Child Health. (1981). Better health for our children: 4 volumes. Washington, DC: U.S. Public Health Service. Silver, G., (1978). Child health: America's future. Germantown, MD: Aspen Systems Corporation. Silver, G., (1981) Reflections on maternal and child health program reviewing the literature; 1975-1980. In Better Health for Our Children: A National Strategy Report of the Select Panel for the Promotion of Child Health, Vol. 4. Starfield, B. (1977). Health needs of children. In Children's medical care needs a n d treatment. Volume II, Harvard Child Health Project. Cambridge, MA: Balinger Publishing Co.
C o n t i n u i n g Constraints to a P r e v e n t i v e l y - O r i e n t e d Medical Care S y s t e m in the U n i t e d States ROBERT H A L P E R N ABSTRACT: In this paper the author focuseson the structure of, and trends in, our na-
tion's medical care system, as they relate to preventive maternal and child health needs. Continuing barriers to appropriate utilization of medical care, effects of recent federal actions, and possible directions for future change are discussed. This paper focuses on the structure of, and trends in, our nation's medical care system, as t h e y relate to preventive m a t e r n a l and child health needs. Two recent studies have analyzed in great detail the n a t u r e and effects of our system of m a t e r n a l and child health care (Harvard Child H e a l t h Project, 1977; Select Panel for the Promotion of Child Health, 1981). In this paper the author discusses findings of those reports t h a t seem most relevant to preventive health care strategies, and describes other studies t h a t illustrate some of the major issues raised by the findings. The author will summarize the effects of recent changes in federal health policies and budgets, as they appear to be affecting families in different sectors of society. As is the case with m a t e r n a l and child health status in the United States, the medical care system presents a portrait of enormous progress in recent decades, along with a n u m b e r of persistent weaknesses and limitations. T h a t progress has been most notable in the areas of prevention of infectious and communicable disease, detection and m a n a g e m e n t of genetic abnormalities, in utero and after birth, management of medically high risk neonates, and application of simple technologies to m a n a g e problems like chronic otitis media (myringotomy tubes) and diarrhea (oral r e h y d r a t i o n packets). There has been significant progress in assuring the availability of at least some measure of medical care to low income families in m a n y settings. Persistent weaknesses and limitations of our system of medical care appear to fall into four categories: continued differences in the interpersonal quality of care based on ability to pay, and ethnic or racial background, continued geographic mal-distribution of providers, affecting inner city neighborhoods and m a n y r u r a l communities, continued systemic inability to address sociocultural and behavioral factors 115
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affecting appropriate utilization of available care, and continued systemic inability to work closely with families and to prevent and screen for health problems. George Silver (1981), a long time provider and observer of child health services in the United States, notes: The overwhelming impression upon reading the literature is that social factors are critical determinants of the use of prenatal care and preventive services for children; that these social factors operate despite the provision of and ready access to medical care service; that these social factors themselves may have an important influence on the health of children; that technological excellence is useful but not decisive in reducing maternal and infant morbidity and mortality. (p. 844)
Continuing Barriers to Utilization
Using medical care services preventively and diagnostically at appropriate points in one's family's life appears to be a habit, or a lifestyle. Many families do not see the medical care system as a routine part of their n a t u r a l support system, and thus use it in crisis-oriented, episodic ways (Granger, 1979). The specific reasons for such attitudes toward the medical care system vary. For example, average waiting time and transportation to see a physician, one determinant of utilization, differs considerably among families: it ranges from 43 minutes for non poor families, to 66 minutes for the poor generally, to 81 minutes for those on welfare. Although there is evidence t h a t members of different ethnic, educational and socioeconomic status groups rate the importance of various health measures such as immunization and screening equally, different groups do not use preventive care equally (Fuchs, 1983; Newberger, Newberger & Richmond, 1976). One explanation for the discrepancy can be found in structural features of the medical care system. Quesada and Heller (1977), for example, examined barriers to medical care utilization among Mexican-Americans in Texas. They found: perceptions t h a t institutional supports and services were unpredictable, unstable and inaccessible; significant communication problems between families and providers; traditional patterns of help-seeking behavior t h a t were very strongly rooted--specifically, t u r n i n g to kin and folk healers for cures; and an inability or unwillingness within the medical care system to adapt to the special demands of serving a culturally different population. Exacerbating such barriers was the
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fact that 24 of 28 counties in which Mexican-Americans live in significant numbers in Texas are underserved by physicians, nurses, dentists, pharmacists, and occupational therapists. The findings from a study by Kline (undated) illustrate how personal factors and institutional factors interact to prevent appropriate utilization of medical care. She assessed prenatal health care decision-making among 208 rural black women in six Alabama counties. Each woman was interviewed early in her pregnancy and one month after delivery. Data were also gathered from medical records. For purposes of analysis the population was divided into a group reporting a high number of symptoms and a group reported a low number, to examine utilization patterns based on preventive motives (low symptom) and therapeutic concerns (high symptom). Kline found in this population: (1) significant underutilization of prenatal services, with slightly more than 50 percent not initiating prenatal care until the second trimester or later; (2) a substantial number of women reported experiencing potentially serious symptoms (headaches, swollen extremities, dizziness, blurry vision, painful urination) and not reporting them to a physician; (3) generally inadequate prenatal health knowledge, especially a tendency to underrate the seriousness of problems, with knowledge not increasing with previous pregnancy experience; (4) a strong tendency for high-symptom women to refer themselves to family and friends for help, rather than to physicians. Limited knowledge interacted with other situational barriers to affect use. Most dramatically, segregated waiting rooms were still used by 50 percent of the physicians in the counties involved, a situation psychologically and socially demeaning to families. Transportation problems in the low risk group, and in both groups perceived happiness of the father and actual happiness of the mother with the pregnancy, strongly influenced utilization. As a result of all these factors 25 percent of the women had delivery complications, and 30 percent of the infants experienced difficulties at birth. Even in situations theoretically more attractive to users than those found in the above Alabama counties, availability of services has not usually been enough to ensure their utilization. For example, Nutting, Barrick, and Logue (1979) examined the effects of a special, high risk maternal and infant health clinic established on an Arizona Indian reservation to serve high risk, hard-to-reach families. They report that "the segment of the prenatal population who derived the major benefit from the MCH program was that group who sought and received rea-
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sonably good care prior to the program and who according to the risk criteria were least likely to benefit from the program" (p. 278). This effect was found despite careful identification of the high risk population and reportedly aggressive outreach. Constraints to utilization of medical care based on economics and lack of availability of services appear to be a much less important factor than historically in the United States. Medicaid funds, Title V programs (such as Maternity and Infant Care Projects, Children and Youth Projects, WIC, Improved Pregancy Outcome Projects, and so forth), and Community Health Centers, have formed a valuable if somewhat fragmented network of support to many poor families. Thus, reports summarizing progress as recently as 1981 indicate that parents of children on Medicaid identify some regular source of medical care as frequently as those of non-poor children, though a much higher percentage of both those groups report regular sources of care for their children than those poor families not eligible for or utilizing Medicaid (Budetti, Butler, & McManus, 1982). These same reports point out that only 48 percent of children in families with incomes below the poverty level are on Medicaid. And among some groups, such as rural blacks and Mexican-American migrants, only 20 percent are on Medicaid. As of the late 1970s the poor generally were still eight times more likely than the non-poor to have no regular source of medical care (Budetti, Butler, & McManus, 1982). Medicaid was originally intended to increase access to private, especially office-based, medical care among the poor. But the use of hospital-based clinics among the poor has actually increased among Medicaid eligible families in recent years, especially for children under 6 years of age (Dutton, 1981). It has been noted that poor families tend to over-use emergency facilities, but the evidence available does not support that supposition (Gortmaker, 1981). Nonetheless, because public and hospital-based clinics tend to be significantly less convenient to use (due to greater waiting time, bureaucratic barriers to usage, and related factors) and provide more impersonal care, they tend to discourage what has been called "patient-controlled" care. Such care is usually preventive. It includes routine prenatal, well-baby and wellchild care, which are usually up to family to initiate and follow through on. Medicaid restrictions in several states have been such that many intact low income families who cannot afford to pay for their own prenatal and well-baby care are ineligible for Medicaid assistance. In particular, poor families ineligible for AFDC because of the presence of two
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parents and/or some earned income, have frequently been ineligible for Medicaid. In 1979, Medicaid programs denied prenatal care for first time mothers who were Medicaid-eligible in 21 states (Homer, 1980). Many low-income working families have private health insurance that pays for hospitalization b u t not office visits, in particular prenatal care. (As this paper was being revised [in the summer of 1984] the Deficit Reduction Act of 1984 was passed by Congress and signed by President Reagan. This Act included an improvement in Medicaid known as CHAP, the Child Health Assurance Program. Under the provisions of CHAP states will be required to provide Medicaid to all poor children up to age 5 and most poor pregnant women, regardless of AFDC eligibility.) Nevertheless, many physicians refuse to see Medicaid-enrolled patients. In one southern state in two-thirds of the counties there is no physician who will accept Medicaid as a basis for payment (Miller, 1984).
Effects of Recent Federal Actions Recent (1982-1983) federal health care budget reductions threaten gains in access and availability, and have begun to affect the nature and amount of preventive, diagnostic and curative services available to and used by poor families. Prenatal and delivery services and preventive care for infants and children have borne a disproportionate share of federal cutbacks. One recent survey (Rosenbaum & Weitz, 1983) found that as a result of federal budget cuts every state has reduced its Medicaid program for women and children, by either cutting back services or further restricting eligibility (CHAP should remedy the latter); 47 states have eliminated some Title V maternal and Child Health block grant programs, and 465,000 children and women of childbearing age have lost services at Community Health Centers that have been closed. Most states were forced to cut back in several areas. The following illustrate cutbacks in specific areas: Alabama closed 6 maternity and infant care projects, affecting 10,000 pregnant women. In Florida, 23,000 children were eliminated from Medicaid. Illinois restricted Title V well-child care funds to children under one. Kentucky decreased funds for its Improved Pregnancy Outcome Project, eliminating 584 of 1,168 women potentially served. New Jersey reduced its visiting nurse programs by 85 percent. An even more recent report (Miller, 1984) describes the effects of a $10 million budget reduction in neighborhood-based comprehensive
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health services in Denver: 300 staffpositions were eliminated, all wellchild clinics were discontinued, there were cutbacks in nutrition counselling, transportation, outreach, social work services, family health services and dentistry, and highest priority for continuing services was given to reimbursable services and critical care for acute illnesses. It is probably too early to know the effects of such cuts in patterns of medical care utilization among poor families. State health departments and the federal government have demonstrated only moderate interest in monitoring possible effects (Miller, 1984). The cuts will surely make preventive services such as prenatal and well-child care more difficult to gain access to, less convenient and even less personal to use. Whether they will directly affect health status of women and children remains to be seen. Studies suggest that major changes in the health of populations have been attributable more to major social and economic changes as they affect public health conditions and lifestyle than to short-term changes in the quality or availability of medical care (Fuchs, 1974; Mechanic, 1982). The latter has had a clear but discrete influence, the former a pervasive one.
Families With Special Needs: The System's Response There are large numbers of American families, both poor and nonpoor, whose health-related treatment or support needs do not fit the standard components of our medical care system. Families whose children have behavior or developmental problems, families in which parents may be overwhelmed by day-to-day pressures, and/or may be neglecting or abusing their children, young, socially isolated parents who have just brought a baby home from the hospital, and families in small, rural communities, all have needs that do not seem to fit our approach to providing medical care. The stresses and barriers these families experience prevent them from effectively managing their own family health, and also from using formal medical care appropriately. Chamberlin (1982), Kempe (1980), and others have argued that our medical care system is especially weak in identifying and addressing psychosocial stress in family functioning, particularly among the poor. Pediatricians, for example, receive little training and spend little office time in the identification, diagnosis and family management of behavioral problems in children. There is evidence that "anticipatory guidance" by pediatricians can have a significant effect on parenting behavior (Aronson, 1981). Yet Chamberlin (1982) cites a study in
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which it was found that an average of 90 seconds was spent by the pediatrician in anticipatory guidance with parents during well-child visits. Starfield (1977) has pointed out that the "presenting problem" or reason for a visit to a physician frequently masks others that would be recognized if more was known about the family.
Outreach: Potential and Actuality Some of the constraints on adequate health self-care and appropriate utilization of formal medical care, especially those constraints related to geographic or social isolation and day-to-day coping problems, suggest a need for the medical care system to reach out to provide care and support. The "outreach" component of our medical care system has never been prominant, and has suffered disproportionately from recent budget cuts. Nonetheless, it remains a component of the system with significant undeveloped potential. Outreach can take many forms, and can have a number of goals. It can be focused on promoting community involvement in health maintenance, counselling, information and referral, active linkage to services, health education, health surveillance and screening, actual treatment, following through with phsycian instructions, and helping overcome cultural and linguistic barriers (Beauchesne & Mundel, 1977). Approaches to outreach have included nurses and trained paraprofessionals doing door-to-door canvassing and/or conducting home visits, establishment of small community clinics, and the use of mass media. Almost all outreach effort has been conducted by the public health sector, a few health maintenance organizations, or community-based groups. Evidence on the effectiveness of outreach programs that have been attempted is moderately positive. In one review of five programs it was found that outreach was clearly effective in enhancing appropriate utilization, especially of preventive care, by those families already inclined to use medical services; it was less clearly effective with nonusers (Beauchesne & Mundel, 1977). Another study found that hospital-based nurses who conducted outreach were effective in increasing utilization of well-baby care among low income families in Rochester, New York, but that the effectiveness of outreach was mediated by prior experiences with such care, the father's attitudes, and parity (Hoekelman & Zimmer, 1975). Recent reviews of early childhood home visiting programs with health-related goals have noted the effectiveness of such programs in providing surveillance of infant
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health and growth, identifying potential child abuse and neglect, and encouraging use of well-baby care (Chamberlin, 1980; Kempe, 1980). Colombo, Freeborn, Mullooly, and Burnham (1979) describe a program of outreach using specially trained paraprofessionals to increase poor families' use of preventive services for their preschool children. "Neighborhood health coordinators" were used by the Kaiser-Permanente Medical Care Plan in Oregon to visit and explain to parents the value of early screening and periodic examination of young children. Using baseline utilization rates as a reference, the authors found a 55 percent increase in utilization of preventive services by families contacted by outreach workers. In the late 1960s and early 1970s the problem of under-utilization of available services of all sorts was seen as an important one. Even today, under-utilization often exists side by side with lack of access or availability. Domke and Coffey (1966) described a program in Allegheny County, Pennsylvania, utilizing neighborhood health aides to conduct door-to-door interviews, inquiring whether families are linked into and using appropriate public health services. They found that the aides, carefully selected as natural leaders, and carefully trained and supervised, were effective in identifying families in need of particular services but not utilizing them, in identifying the presence of untreated health problems, and in helping families decide to seek medical care. For example, the 1,800 home contacts turned up 340 cases where curative health services were needed. In a variation on outreach, Kent and Smith (1967) described a program developing a role called "neighborhood representatives," who were to interpret the values, community-expressed needs, and so forth, in relation to medical care, to local providers. The goal was to improve community attitudes toward, and thus utilization of available services. A key assumption was that the medical care system could be made more useful if it accommodated itself to the lifestyle of local neighborhoods. The representatives played a number of roles: service expediter, neighborhood organizer, patient advocate. They accompanied families to appointments, relayed complaints to providers, and established a lay health council. Using some local neighborhoods as treatment, others as control, it was found that treatment neighborhoods had a 40 percent higher utilization rate of various clinic-based services. Much has been made of the significantly greater success European, especially Scandinavian, medical care systems have had in reaching out to serve families who are at psychosocial and medical risk, and who do not use available services for various reasons. In Sweden, for exam-
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ple, public health nurses are assigned a new caseload for well-child care home visiting of 50 children a year, building over five years to a total caseload of 250. Yet even in countries with extensive outreach it has proven difficult to assure appropriate utilization. Sweden, aside from well-child care outreach, has a universal system of free pre- and post natal maternity care, provides a range of childbirth and parenting education activities, and has regular home visiting nurses. Yet there is evidence that the highest risk families in S w e d e n - - b y both medical and psychosocial criteria--continue to use preventive and well-child services least, and least appropriately (Sandgren, 1981).
The Need to Integrate Elements of the System K a r k (1981) has argued that outreach efforts must be closely linked to epidemiological survey and clinic-based services, in a total, integrated program that he calls community-oriented primary health care. He argues that the commonly found fragmentation among various components of a total medical care s y s t e m - - p r e v e n t i v e and curative care, clinical services and public health activities--constrains the ability of that system to influence community health as a whole. Those families who do not actively seek out the elements of that fragmented system are not integrated into it. K a r k argues that there should be a natural flow of people into easily accessible clinics, and a like flow of providers out of the clinic into the neighborhood. He argues that there should be a sufficient number of "meeting points" between particular services, and services and community. Providers should take responsibility for the health of a population. K a r k tested these ideas in a demonstration effort in Kiryat Yovel, a neighborhood of Jerusalem. Health teams were formed who were trained to provide both clinical services and conduct public health activities. The program reported a significantly reduced incidence of a number of key health problems identified by the team: anemia in pregnancy, asymptomatic bacteriura in pregnancy, and cigarette smoking. It also contributed to an increase in breast feeding and longer child spacing between births. Silver (1978) has examined the potential for greater integration among discrete elements of the American medical system, especially preventive and curative care. He has found that efforts at integration have not been and are not likely to be successful. Physicians, he concludes, are not trained for, are not interested in, do not believe in, and
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most important do not have the economic incentives to undertake prevention. Evidence for the efficacy of most kinds of prevention activit i e s - b e y o n d child immunization and prenatal c a r e - - i s certainly not clear-cut. Early and periodic screening is an example of an activity for which the benefits have not been demonstrated to clearly exceed the costs in h u m a n and fiscal terms. But, the lack of evidence on efficacy for prevention activities like comprehensive developmental screening m a y be due to their lack of connection to a larger process, in which problems identified are automatically followed through on. The fee-for-service basis of most payment to physicians is a major constraining factor to greater focus on prevention activities, whether screening, anticipatory guidance, or other. Further, preventive services are not covered by most private third-party insurers. But it is probably the continued skepticism of medical training, certification, and professional organizations that contributes most to a professional climate not conducive to prevention activity. For example, Quesada and Heller (1977) report that physicians in Texas who attempted to work for straight salaries in clinics for the poor faced reprisals from local affiliates of the Texas Medical Association. These included lost patient referrals, ostracism by peers, and harassment by review boards. As another example, only a few medical schools train their pediatric students to conduct developmental assessment beyond the physical exam. The American Academy of pediatrics (1977), perhaps the most sensitive of professional medical groups to prevention concerns, points out that: Pediatricians currently practice preventive child health care because they are firmly convinced of its efficacy, although no comprehensive documentation of the value of preventive child health care has ever been made. There is little or no scientific evidence for some of the procedures currently suggested for and accomplished during well-child visits. (p. xxx) In an article entitled "The Perils of Prevention," Eisenberg (1977) argues that most of the prevention health problems that could be solved through clear-cut technological advances have been solved. Vaccination against poliomyelitis is the paradigmatic example of such problems. Many of the remaining problems, he argues, are those that will require basic changes in personal and social values, behavior and lifestyle. The Select Panel for the Promotion of Child Health (1981)
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points out that a growing proportion of problems in maternal and child health are "rooted in the complex life situations of families" (p. xxx). Should biomedical resources be utilized to address these current prevention prolems, and, if so, how? The question of how much attention should be paid to prevention, especially in the area of maternal and child health, cannot ultimately be just a scientific one. Birch (1970) has noted that it m a y not be appropriate to ask as a scientific question "What is the best form in which health services may be delivered to a community?", because the answer to that question requires us to address a number of fundamental political and social questions: Best for whom? In whose terms? With what objectives? In the United States we have built a technologically powerful medical care system. But this system has by and large avoided assuming responsibility for many community health problems, especially those rooted in the social, economic and behavioral aspects of community health. It is a system best suited to those who have the skills and financial resources to help themselves. Many observers of our medical care system doubt that there will be a significant shift in orientation in the near future. It thus remains for the myriad of community-based organizations, serving families in diverse ways related to health, to develop technologies for working in areas receiving less attention from the formal medical care system. These areas include building families' capacities to help themselves through the formal system, and to manage their own family health in the home. Also, although categorical services are usually identified with fragmentation and discontinuity, they may be the only means in the near future of earmarking public resources for women and children. If so, the current trend toward mingling health care funds at federal and state levels should be reversed.
References American Academy of Pediatrics, Ad Hoc Committee of the Legislative Issues Committee (1977). Value o f preventive child health care. Evanston, II: Author. Aronson, S. (1981). The health needs of infants and children under 12. In Better health for our children: A national strategy. Report of the Select panel for the Promotion of Child Health. Vol. 4. Washington, DC: U.S. Public Health Service. Beauchesne, D., & Mundel, D. (1977). Determinants of children's health services. In Developing a better health care system for children. Harvard Child Health Project. Vol. 3, Cambridge, MA: Ballinger. Birch, H. (1970). Research issues in child health: Some philosophic and methodologic issues. Pediatrics, 45, 874-883.
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Budetti, P., Butler, J., & McManus, G. (1982). Federal health program reform: Implications for child health care. MiUbank Memorial Fund Quarterly: Health and Society, 60, 1, 155-181. Chamberlin, R. (1980). Conference exploring the use of home visitors to improve the delivery of preventive services to mothers with young children. Washington, DC: Proceedings of a conference sponsored by the American Academy of Pediatrics. Chamberlin, R. (1982). Prevention of behavioral problems in young children. Pediatric Clinics of North America, 29, 239-247. Colombo, T., Freeborn, D, Mullooly, J., & Brunham, V. (1979). The effect of outreach workers' educational efforts on disadvantaged preschool children's use of preventive services. American Journal of Public Health, 69, 465-467. Domke, H., & Coffey, G. (1966). The neighborhood-based public health worker: Additional manpower for community health services. American Journal of Public Health, 56, 603-608. Dutton, D. (1981). Children's health care: The myth of equal access. In Better Health for our children: A national strategy. Report of the Select Panel for the Promotion of Child Health. Washington, DC: U.S. Public Health Service. Eisenberg, L. (1977). The perils of prevention: A cautionary note. New England Journal of Medicine, 297 1230-1232. Fuchs, V. (1974). Who shall live? Health, economics, and social choice. New York: Basic Books. Fuchs, v. (1983). How we live. Cambridge, MA: Harvard University Press. Gortmaker, S. (1981). Medicaid and the health care of children in poverty and near poverty. Medical Care, 19, 567-582. Granger, R. (1979). Health care as a family support system. In International year of the child: Child advocacy. Proceedings of a Conference at Yale University, New Haven. Harvard Child Health Project. (1977). Volumes 1-4. Cambridge, MA: Ballinger Publishers. Hoekelman, R., & Zimmer, A. (1975). Utilization of available well-baby care by indigent population groups. In R. J. Haggerty, et al. (Eds), Child health in the community. New York: Wiley. Horner, M. (1980). The quality of American life in the eighties. Washington, DC: President's Commission for a National Agenda for the Eighties. Kark, S. (1981). The practice of community-oriented primary health care. New York: Appleton Century Crofts. Kempe, H. (1980). Approaches to preventing child abuse: The health visitors concept. In L. Williams & L. Mony (Eds.), Traumatic abuse and neglect of children at home. Baltimore, MD: Johns Hopkins. Kent, J., & Smith, H. (1967). Involving the urban poor in health services through accomm o d a t i o n - the employment of neighborhood representatives. American Journal of Public Health, 57, 997-1003. Kline, A. (undated). Health decision-making among rural, black pregnant women in Alabama. Tuscaloosa: University of Alabama, Department of Community Medicine. Mechanic, D. (1982). Disease, morality and the promotion of health. Health Affairs, 1, 28-39. Miller, C. (1984). The health of children: A crisis of ethics. Pediatrics, 73, 550-558. Newberger, E., Newberger, C., & Richmond, J. (1976). Child health in America: Toward a rational public policy. Milbank Memorial Fund Quarterly. Summer, 249-298. Nutting, P., Barrick, J., & Logne, S. (1979). The impact of a maternal and child health care program on the quality of prenatal care: An analysis by risk group. Journal of Community Health, 4, 267-279. Quesada, G., & Heller, P. (1977). Sociocultural barriers to medical care among MexicanAmericans in Texas. Medical Care, 15, 93-101, Rosenbaum, S., & Weitz, J. (1983). Children and federal health care centers. Washington, DC: Children's Defense Fund.
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Sandgren, B. (1981). Integration between the education sectors and the health and welfare sector in the context of policies for children. In Children and society. Paris: OECD/CERI. Select Panel for the Promotion of Child Health. (1981). Better health for our children: 4 volumes. Washington, DC: U.S. Public Health Service. Silver, G., (1978). Child health: America's future. Germantown, MD: Aspen Systems Corporation. Silver, G., (1981) Reflections on maternal and child health program reviewing the literature; 1975-1980. In Better Health for Our Children: A National Strategy Report of the Select Panel for the Promotion of Child Health, Vol. 4. Starfield, B. (1977). Health needs of children. In Children's medical care needs a n d treatment. Volume II, Harvard Child Health Project. Cambridge, MA: Balinger Publishing Co.
