Experiments in Children’s Healthcare Institutions
Nurses in the early 1900s, on the other hand, would have been astonished to know that in the middle and later parts of the century nurses would become so complacent about TB. Although scientists could identify the pathogens responsible for many infectious illnesses at the time, no effective treatment for these illnesses existed. Because supportive care was the only available therapy, communicable diseases commanded substantial attention. Until the widespread use of streptomycin in the 1950s, TB was one of the world’s most serious afflictions. Its popular monikers “The White Plague” and “The Great Killer” signified its cultural as well as demographic impact. In urban areas, tuberculosis caused up to fifteen percent of all deaths, more than any other infectious disease, and infected individuals who did not die often experienced long periods of tuberculosis-related debilitation. [3]
Nurses played a critical role in the public health response to tuberculosis. In addition to staffing dispensaries and sanatoria, they cared for patients in their homes. One of their most important jobs lay in identifying new TB cases. Nurses also monitored patients’ progress and ensured the implementation of public health measures in indigent communities by teaching people hygiene, such as covering their mouths when they coughed, policing the sick, and reporting those who did not follow instructions. [4] Treatment, whether in the home or a sanatorium, consisted of adjusting the environment (such as room temperature, cross-ventilation, and sunlight exposure), the exercise-to-rest ratio, and nutrition, along with education aimed at preventing the spread of TB. [5] Nurses—particularly public health nurses—were intimately familiar with TB because they often became afflicted and because they represented the foot soldiers in the campaign against TB, striving to minimize transmission of the disease and prevent the development of active disease among those already infected. [6]
The peak years of the TB crisis in the United States, 1900 to 1945, saw the emergence of the preventorium, a little-remembered institution designed to protect the health of children who were considered at risk for TB or who were infected but did not show manifestations of disease. The preventorium blended features of a hospital, sanatorium, and school, while endeavoring to imbue its patients with the values of an idealized middle-class home life. Although each institution looked different, most consisted of a series of buildings for staff to live and work. Cottages for cooking and laundry, for example, peppered the landscape as did a dispensary.
Children’s open-air sleeping wards surrounded the administrative buildings. The institution did not treat sick children, but rather aimed to prevent TB in indigent youngsters considered most likely to get it. These children typically hailed from families in which one or both parents suffered from the disease. They spent as much time as possible out of doors in camp-like settings where they received their education, meals, and rest. Children stayed at the preventorium for many months, sometimes even years. Readmissions were common.
The Social Understanding of a Disease
The preventorium was a solution that reflected shifting understandings of tuberculosis. Although TB reached across all classes in the nineteenth century, by 1900 better nutrition, housing, and sanitation in the wealthier classes reduced their risk for the disease, and TB and poverty became more closely linked. At the turn of the century, for example, the indigent neighborhoods of Manhattan’s Lower East Side experienced three times the death rate from TB that wealthier uptown neighborhoods did. [7] The early twentieth-century public health crisis caused by TB alarmed and overwhelmed municipal health departments. Many nurses, physicians, and other health workers feared that the epidemic might spiral out of control, particularly in urban areas.
While the rural poor also contracted TB, they usually lived in less crowded environments, so they were less likely to spread the disease. They were also less visible to those struggling to supplement the limited governmental infrastructure available to address the TB epidemic during the early-twentieth-century societal restructuring and turbulence known as the Progressive era. Antituberculosis activists believed that families in urban tenements were particularly at risk because of crowding, poverty, and hazardous occupations in confined spaces such as factories. Addressing the broad societal problems related to the epidemic became a chief priority of those reform-minded individuals who gathered in 1904 to found the National Tuberculosis Association. [8]
The concept of institutionalizing at-risk children originated during these frustrating times. Robert Koch had demonstrated the bacterial etiology of TB in 1882, but effective therapies remained elusive. Although Koch’s work laid the groundwork for what is now known as the germ theory of infectious disease, many had difficulty discarding the notion that filth and poor sanitation gave off “miasmas” (impurities in the air) that caused disease to generate spontaneously. Others remained convinced that immorality and “bad heredity” led to poverty and, by extension, illness. Without further scientific data, it was difficult to discount entirely these theories of sanitarianism and hereditarianism regarding TB causation. As a result, most nurses, physicians, and others fighting TB considered race, ethnicity, and socioeconomic class to be critical in determining risk of contracting the disease and cited research published in prestigious journals as justification for their beliefs. [9]
New scientific findings also set the stage for the preventorium’s inception. First, in 1903, research suggested that adult TB was a reactivation of an infection acquired during childhood. Previously, many believed that children between the ages of five and fifteen were immune to TB, simply because there were fewer TB-related pediatric deaths than adult deaths. [10] Second, a scientific rationale for the preventorium emerged after the 1908 discovery that a byproduct of tubercle bacilli culture—tuberculin, a less refined version of today’s purified protein derivative—could be used to identify infected people before they developed symptoms. Before tuberculin, physicians classified people into two groups with regard to TB: the sick and the well. After 1908, a third category arose: those infected with the organism who did not yet have active disease. In the absence of a cure, a prevention campaign focused on at-risk children certainly seemed wise, especially since new laws mandating registration and segregation in some instances, justified scrutiny and extensive intrusion into the lives of the people they affected. As a result, these initiatives generated controversy, fear, and distrust of health officials in many poor neighborhoods. [11]
By design, the earliest tuberculosis legislation disproportionately affected the poor. In 1894, New York became the first city in the United States to mandate that physicians send the names and addresses of those diagnosed with tuberculosis to the New York City health department. However, the law required the registration only of those diagnosed or cared for in publicly funded dispensaries, hospitals, or sanatoria. These institutions were the exclusive province of the indigent. Those with means sought treatment from privately funded facilities, thereby exempting themselves from the notification requirements. Three years later, the city passed a law requiring physicians to report cases of TB in patients treated at either public or private institutions, but they monitored it weakly. Not until 1907 did New York enforce registration for all cases of TB in any of its forms, meaning that the health department received notification of the names of middle- and upper-class TB sufferers, as well as those who were poor. [12]
Philanthropist Nathan Straus, an owner of Macy’s department store in New York City, opened the first preventorium in 1909 in Lakewood, New Jersey; by the late 1920s, most large cities could claim at least one such institution on their outskirts, either publicly or privately funded. The nurses, physicians, philanthropists, and government bodies who founded preventoria hoped to combine the best elements of a home, school, and sanatorium in one pediatric institution. But the founders’ motives also included targeting children of indigent tuberculosis sufferers, often non-English-speaking immigrants whose cultural practices were considered “foreign” and thus likely to create increased risk of disease.
Daily Care
Founders of the preventoria believed that outdoor activities, fresh air, and sunshine would increase resistance, and they developed a highly regimented program of nutrition, rest, exercise, sunlight, and prolonged exposure to the open air for children. Education about personal hygiene and healthy living completed the institution’s programs. A child stayed at the preventorium for months, even years, during which time visits from parents were occasionally allowed but not encouraged.
Physicians visited the facilities, but it was the nurses living at the preventoria who scrupulously oversaw the daily health needs and instruction of children. Nurses monitored the children’s physical health, while also acting as chief operating officers, educators, disciplinarians, counselors, and substitute mothers. Nurses sought to create and maintain an environment they considered superior to that of the children’s homes. To this end, nurses made sure that food and supplies were ordered, laundry was washed, and the institution in general remained functional. They assessed the childrens’ nutritional intake, weight, temperature, and other barometers of their well-being. They also monitored the children’s emotions, comforting them when they were homesick, and responded to parents’ inquiries. Nurses’ days were full, especially when a sick child kept them on duty into the night. The nurse’s central role was consistent with the founders’ initial vision of the institution as a health care and not a social welfare facility, such as an orphanage or infant asylum, an increasingly stigmatized institution in the early twentieth century.
Children usually gained weight while institutionalized, and many returned home healthier. Nevertheless, preventoria operated under several flawed premises and the estimation that the home was safe just because the ill person’s most obvious symptoms had diminished was one of them. The parent who was infected with TB was still in the home, often with other children. Why only remove the sickliest child since those healthy-appearing ones were likely to become sickly themselves? Health care providers knew that a bacterium caused TB, so it made little sense to leave other children in the home to become infected. Since most of the preventorium families remained desperately poor, why assume that they now had the financial resources to reduce overcrowding in their homes and purchase adequate food?
In addition, the nurses and physicians involved hoped the children’s protracted stays away from their families could be used as an opportunity to indoctrinate the offspring of immigrants and the poor with middle-class American standards of hygiene and diet. Many nurses were not members of the upper or middle classes, yet they stood as links between the upper and lower classes. [13] Drawing on their apprenticeship training in hospitals, most nurses were indoctrinated in the belief that American-born middle class dietary and hygienic practices were healthier than those of the poor and immigrant individuals. Often hired by voluntary agencies founded by wealthy reformers, nurses played a key role in transmitting this information to the indigent, insisting, for example, that an Anglo-American diet was healthier than the foods traditionally associated with Italian or Polish immigrants.
This ethos was reflected in referral patterns for preventorium care. Health care providers did not send all children who reacted to the newly derived tuberculin test to a preventorium. Non-specific physical factors (weight loss, fatigue, and pallor) and social indices (parental TB status, socioeconomic status, and ethnic or racial background) supplemented a positive tuberculin test to further refine that population of children considered to be at imminent danger for disease. The identification of TB-predisposing factors fostered medicalization of nutrition, lifestyle, child rearing, and child and parent behavior, imbuing them with new clinical meaning and placing families under medical surveillance. As a result, deeply rooted assumptions regarding class, race, and ethnicity were embedded into preventorium treatment and antituberculosis activists often projected their own—thought to be better—beliefs, values, and health-related routines onto the children they sought to make healthy.
The campaign to institutionalize poor children suspected to be at high risk for developing TB expanded after World War I. A media barrage, in the professional literature and the lay press, helped popularize the movement. However, by the end of the 1930s the institutions fell out of favor because of declining numbers of new TB cases and a lack of scientific evidence quantifying the preventoria’s efficacy. And a growing number of child welfare interventions, such as those implemented by the Social Security Act in the late 1930s, emphasized family preservation, which didn’t coincide with the preventoria’s objectives. It was the advent of antibiotics, however, that was the coup de grace for the preventorium. The introduction of streptomycin in 1944, followed by isoniazid in 1952, meant that TB was a disease treatable with outpatient therapy. Incidence of the disease in the United States declined rapidly, and preventoria closed or were converted to other uses in the ensuing years.
Learning From the Past
Why should we bring to mind an intervention that did not stand the test of time? Studying the past cannot resolve present-day dilemmas, but perhaps it can help us to better understand contemporary communicable diseases. We live in a world in which the threat of infectious disease is a major public health concern. News reports regularly mention the emergence of antibiotic-resistant microorganisms or of newly identified communicable illnesses such as Ebola hemorrhagic fever, Lyme disease, Hantavirus, hepatitis C, virulent Escherichia coli strains, and West Nile virus. [14]
For nurses, the preventorium raises important issues to consider. Did the institution, in fact, prevent TB? It is difficult to ascertain the extent to which any individual antituberculosis intervention contributed to TB’s declining incidence. That preventorium children were generally not sick further complicates any attempt to determine the institution’s impact on their later health status. It cannot be assumed that those TB-exposed youngsters who went to a preventorium stayed healthy because of the care they received there. Certain of these children might never have developed TB regardless of what, if any, treatment they received. As a result, the preventorium’s actual contribution to the antituberculosis movement is nebulous.
It is easy in retrospect to see the flaws in removing one sickly child from a home, when an infectious, ill, indigent parent brought his or her children to the dispensary for evaluation as most adults were required to do in order to receive treatment. But then, as now, the United States’ social welfare net is a porous one. Since the nurse did not have the resources to move the family to more spacious quarters and provide financial support, they may have assumed that the preventorium represented an imperfect solution, but one that was most humane choice, given the only other options, an orphanage, juvenile asylum, or homelessness.
