HIV Testing and Risk Among Residents of a High Risk African American Community
DATA COLLECTION
Rationale for a Door-to-Door Survey
In 1899, the great scholar and civil rights activist Dr. William Edward Burghardt (W.E.B.) Du Bois (1868– 1963) published The Philadelphia Negro: A Social Study, a seminal work describing the findings from his demographic and sociological survey of the 8,861 “Negro” residents of the Seventh Ward of Philadelphia (Du Bois, 1899). In his study, begun in August 1896 and concluded some 17 months later in December 1897, Du Bois utilized a meticulous and systematic door-to-door household survey methodology that revealed a uniquely broad and deep understanding of the living conditions and public health status of the Negro residents of the Seventh Ward.18
Those who commissioned the study expected Du Bois to prove their spurious theory that Negroes’ innate flaws were the root cause of Philadelphia’s multiple social problems (in Du Bois’ own words): “that this great, rich, and famous municipality was going to the dogs because of the crime and venality of its Negro citizens, who lived largely centered in the slum at the lower end of the seventh ward” (Du Bois, 1899, p. xvi). Du Bois’ own impetus for taking on this study was markedly different: “I saw only here a chance to study an historical group of black folk and to show exactly what their place was in the community” (p. xvi). Du Bois explains his moral logic thus: “The Negro problem was in my mind a matter of systematic investigation and intelligent understanding. The world was thinking wrong about race, because it did not know. The ultimate evil was stupidity. The cure for it was knowledge based on scientific investigation” (p. xvi).
Du Bois set about conducting as thorough and scientific a study as possible. He said about his own work that “it revealed the Negro group as a symptom, not a cause; as a striving, palpitating group, and not an inert, sick body of crime; as a long historic development and not a transient occurrence” (Du Bois, 1899, p. xvi).
Du Bois’ seminal study set an ambitiously high standard for the sociological, ethnographic, public health, and demographic scientific research to follow. According to Sieber (1973), “fieldwork dominated social research” until after WW II when public opinion polling caused a shift away from qualitative observational fieldwork towards quantitative generalizable surveys based on “hard data.” Both the sheer size of America’s 21st century urban centers and the complexity and scale of social problems discourage even the most devoted qualitative researchers from replicating Du Bois’ door-to-door methodology, despite the extraordinary combination of meticulous science and undisputed richness of observational findings. Instead, today, sampling and extrapolation continue to be the norm for data collection and analysis.
The dissertation study described herein utilized a primary data collection methodology inspired by Du Bois’ 19th century study. The intention was to combine, as Sieber (1973) advises, the richness and legitimacy of fieldwork with the credibility and generalizability of quantitative analysis. While the final study sample was not expected to reach anything close to Du Bois’ almost 9,000-strong sample size, the reasons for conducting primary data collection (as opposed to analyzing an already extant set of data) and for selecting such an admittedly labor-intensive door-to-door survey methodology were multiple.
18. In this section describing Du Bois’ study, the term “Negro” is utilized in place of the more acceptable “African American” phrase used today to be in keeping with Du Bois’ own use of the word.
First, as was the case in Du Bois’ time, researchers often make assumptions about populations of which they may not be a member or fully understand. For centuries, non-minority researchers, first in Europe and later in the U.S., drew conclusions about how Africans behaved, why they chose or rejected certain behaviors, and what they thought about their own actions. As recently as the 20th century, many of the recommendations targeting African American populations on any number of health topics continued to be extrapolated from studies conducted with white, middle class, (and largely) male subjects.
Because of a dearth of research with cultural and ethnic validity, today’s public health professionals (the majority of whom continue to be non-minority) continue to draw their own conclusions about on what criterion African Americans base their decision to follow (or reject) public health recommendations relating to behaviors that place one at risk for HIV infection, how health educators might best conduct HIV education and outreach with African American individuals and in African American communities, and how at risk individuals might be persuaded to be tested for HIV infection in greater numbers and at appropriate (repeated) intervals.
An example of the way in which ignorance (and biases) can impede public health efforts occurred in the first phase of the HIV epidemic in the U.S. when it almost exclusively impacted homosexuals. The acute lack of insight (and lack of awareness that there might even be insufficient insight) into this population’s lifestyle, behaviors, and social norms on the part of health providers and researchers was so extreme that, in the end, the affected communities essentially relied on their own ability to combat the epidemic (Shilts, 1987). As a result, tens of thousands of men contracted HIV and died of AIDS before the gay community mobilized itself to counter the accelerating epidemic with appropriately tailored prevention efforts.
Since taking its toll on the gay community, the HIV epidemic in the U.S. has expanded to now threaten the African American population with similar, if not more disastrous consequences. The consequences of researchers continuing to contribute erroneous, biased, distorted, or uninformed and uninformative findings are, simply put, deadly to the very population that this study was designed to help. Indeed, if ever there were a time to contribute insightful, accurate, objective, and astute findings to the existing body of knowledge about African American health behaviors especially about HIV—surely, it is now.
Impoverished urban communities, where the epidemic now strikes the hardest, may not be able to amass the internal resources that the largely white, middle class San Francisco, Los Angeles, and New York City gay communities used to successfully fight the epidemic (albeit temporarily). Thus, help may need to come from the public sector and be intelligently and sensitively tailored to urban minority populations which live, as any other sub-population does, within a distinct cultural and socioeconomic context. Studies that successfully elicit answers to critical public health questions directly from minority subjects are important mechanisms to contribute to the growing body of knowledge about the HIV epidemic in minority communities. Continued application of research findings that are not relevant for the population in need may have only limited value (Morrison et al., 1998).
Second, to date, many HIV studies have utilized sampling techniques that depend upon proactive outreach on the part of research staff or field “consultants” (Des Jarlais et al., 2001; Miller, Wilder, Stillman, & Becker, 1997; Iguchi, Bux, Lidz, Kushner, French, & Platt, 1994). These techniques—ranging from snowball sampling to targeted sampling or street intercept surveys—are typically dependent upon either cooperating addicts’ knowledge of where drug use occurs (i.e., the location of dealer locations, shooting galleries, or crack houses) or collaboration with HIV prevention or drug treatment programs to gain access to their clients. The limitation of these types of methodologies—that is, the reliance on known sites to identify research subjects or the use of self-selecting clients of human service agencies—is that researchers end up directed towards those locations and populations that are either known personally to the addict-advisors or that are notorious for drug activity, or to service providers whose clients give rise to skewed findings because program enrollees are self-selecting, receiving services due to behaviors associated with HIV risk, and not generally representative. The problem becomes not the inclusion of such individuals in a study but the de facto exclusion of individuals who are not to be found in these locations. Both risk behaviors and exposure to HIV can vary dramatically between these “known” populations and the individuals or networks that are not so easily identified or accessed (Des Jarlais et al., 2001; Iguchi et al., 1994). Notwithstanding the fact that the subjects of these cited studies were injection drug users whereas the population of interest for the dissertation study described herein was a comparatively stable resident population with less clearly identified risk, the limitations of these sampling methodologies remain relevant. A street intercept design is likely to survey a cross-section of residents of a community; however, in a drug-entrenched neighborhood such as southern Park Heights, where pedestrian traffic may include individuals who are buying and selling illicit drugs, such a sampling is likely to be weighted with high risk subjects.
Third, according to Elijah Anderson in his introduction to the re-issued 1996 edition of The Philadelphia Negro, Du Bois discovered that “race has caste-like implications for blacks” and “saw the black community as being in danger of permanently separating from the mainstream white society” (Du Bois, 1899, p. xxiv). According to Anderson, ethnographer and author of Code of the Street: Decency, Violence, and the Moral Life of the Inner City, his own ethnographic study of the African American neighborhoods along Germantown Avenue in Philadelphia published one hundred years after that of Du Bois, “in race relations, a strong caste line still exists” (Du Bois, p. xxvi).
In order to conduct an ethical study about African Americans and HIV—a topic that necessitates inquiry into sexual and other health behaviors that are so completely intertwined with one’s cultural identity, socioeconomic standing, and social environment—an approach needed to be devised that considered the burden of past and continuing discrimination and racism implicit in these deeply entrenched social divisions. The community of interest falls well within the Federal government’s research definition of “vulnerable populations,” requiring sensitivity to the distrust and disenfranchisement that may suffuse a minority individual’s orientation to public health inquiries generally. Katz, Green, Kressin, Kegeles, Wang, James, et al. (2008) found no clear association between minority populations’ willingness to serve as health research subjects and their knowledge of the U.S. Public Health Service’s 40-year-long Tuskegee Syphilis Study. However, the unethical and brazen sacrifice of subjects’ well-being and basic rights in that study is a reminder that the needs of minority study populations must be protected at all costs even to the detriment of the study.
Going door-to-door (to pre-selected randomized addresses) and requesting entrée into people’s homes to conduct these surveys required that interviewers possess an unusual ability to communicate and build spontaneous trust with their interview subjects. This was not a simple task in a neighborhood where strangers at the door can portend nuisance or even danger. Using interviewers whose visual and verbal presentation would be both comfortably familiar and non-threatening to the residents of this community, in combination with the in-home setting, was an approach designed to elicit a maximum level of trust and enhance respondents’ willingness to give honest and accurate responses about exceedingly personal matters. Indeed, a survey that obliges interview subjects to potentially delve into past hurts (such as suicide attempts or incarceration) and also asks him/her to acknowledge intimate and even illegal behaviors should—at the very least—be conducted on subjects’ home turf where they may feel more empowered to be forthcoming to a degree of their choosing.
Interviewing individuals in their homes also avoided the potential skewing or bias of responses that can occur when research subjects who have been recruited by and interviewed in, for example, human service agencies provide answers that they think will “fit” an institutional setting (Poppen & Reisen, 1997).
Fourth, conducting a door-to-door survey of households within a circumscribed, albeit relatively small geographic area would facilitate a collection of data from a solidly representative sampling of the community. Though time and funding would not support an interview with someone from every household of the area, it was projected to result in interviews with one adult representative from over 200 residential households. In addition, the findings of such a household study would not result in, as so many national studies do, a de facto exclusion of those individuals who cannot reliably be contacted through the mail or by phone. Given the need to produce findings that will translate into more effective HIV disease control measures in the African American community, it was deemed crucial to conduct a hands-on study with a representative cross section of the community.
An in-depth “house-to-house canvass,” such as the one conducted by Du Bois, has never been duplicated on the same scale in the U.S., and public health officials today depend largely upon computerized phone surveys and/or extrapolation from convenience samplings to determine the health status and health care needs of various populations (Du Bois, 1899). While this dependence upon convenience sampling and extrapolation may be sufficient in certain public health topic areas, it does not suffice in the tracking of or response to the HIV epidemic. There is no disputing the economy of extrapolation—especially if one is interested in population-level data. However, the challenges inherent in tracking disenfranchised populations and the fact that minorities are historically underrepresented in the realm of public health research in the U.S. (albeit with onerous exceptions, such as Dr. J. Marion Sims’ obstetrical experiments on female slaves, or the self acknowledged inaccuracies of the foundational (denominator) data collected by the U.S. Census Bureau, particularly in impoverished urban settings) suggest that data collected directly from even a sampling of households of an impoverished minority community are likely to be more reliable and, importantly, more relevant and revealing than extrapolations based on data collected from a sampling of American households and communities, for example, via the National Health Information Survey (Byrd & Clayton, 2000).
The human subjects protections outlined in the Belmont Report (1979), inspired in part by the Tuskegee Syphilis Study and that continue to be enforced by Institutional Review Boards (IRB) across the country, are an important sign of progress in terms of researching minority and other vulnerable populations. However, these protections alone cannot ensure that raw data and/or research findings are relevant or legitimate (HHS, 2002b). Despite the relatively small sample size and unavoidable bias inherent in self-reported data, it was decided that a door-to-door household survey would produce a more accurate picture of the nuanced decision-making of lower risk individuals living in a high HIV prevalence community than the more typical national phone or mailed surveys, or the community-based surveys of self-selecting higher risk populations.