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OCR for page 359
6
Methodological Issues in AIDS Surveys
Surveys or, more generally, the method of asking questions and recording
answers, continue to be one of the most important methods for obtaining
essential information about the epidemiology of AIDS and HIV, the
behaviors that spread HIV, and the effectiveness of AIDS prevention
efforts. Previous chapters included numerous examples of surveys and
observations about the methodological difficulties that often attend these
measurements.
Because of the central role surveys play in research on AIDS and
HIV, this chapter focuses on methodological aspects of this data-gathering
method that have important consequences for the usefulness of survey
data. The technical material and methodological details in this chapter
make it more difficult to read than preceding sections of the committee's
report. The committee's aim in presenting this material is to provide
researchers conducting AIDS surveys or analyzing data collected in such
surveys with a detailed review of the current state of methodological
research in this area. Readers who seek only a synopsis of the committee's
conclusions and recommendations may wish to consult pages 27-34 of
the summary chapter.
Before turning to specifics, it may be useful to consider data gathering
in general and the types of problems that may compromise the collection
of accurate and informative data. One may usefully distinguish five
aspects of survey data collection: (1) the Sedition of the population to
be studied and the drawing of a target sample from that population; (2)
the execution of the sample design, that is, finding the persons in the
target sample and enlisting their cooperation in the survey; (3) the posing
of questions to elicit the desired information; (4) the answering of those
359
OCR for page 360
360 ~ AIDS: THE SECOND DECADE
questions by the respondent; and (5) the recording of those answers (and
subsequent data processing and analysis).
To examine these elements, let us consider a hypothetical survey
(much like the decennial census) that targeted all households in a par-
ticular jurisdiction of the state of Texas. Let us suppose further that the
information to be obtained concerned automobile ownership (e.g., how
many automobiles were owned by each household, the make and year of
the autos, etc.~. This survey, although not simple to conduct, would nev-
ertheless be considerably less difficult to conduct than a survey seeking
to assess behaviors that transmit HIV; in particular,
· the survey involves matters of fact that are both open to
direct observation and matters of public record (e.g., make
and year of automobiles owned by household);
· the topic is unlikely to be regarded as sensitive or"pn-
vate" by respondents, although as in any survey some
respondents may not wish to take the time to respond;
· developing questions about this topic can draw on a widely
shared vocabulary (i.e., there is little ambiguity about what
constitutes a"car" or"ownership"~;
· respondents who are not well informed can consult with
other household members or check records (e.g., registration
certificates);
· checks of survey accuracy can be made at the group level
(by comparing the rates of auto ownership found in the
survey and in registration records) and at the individual
level (by checking individual registrations; and
· census data on income and statewide auto registration data
are available to target the survey efficiently toward seg-
ments of the population of particular interest (e.g., current
or "potential" owners of Belchfire 500s).
Surveys that inquire about sexual behaviors or IV drug use differ
in several ways from the foregoing example, and these differences pro-
vide a much greater challenge to the survey (or question-and-answer)
method. First, many of the logical "target populations" for drug use
and sexual behavior surveys cannot be identified reliably from official
statistics. There are few reliable data on the distribution across the na-
tion of persons who engage in behaviors that risk HIV transmission.
1 The survey may, however, produce detailed information that cannot be verified from public records-
for example, the proportion of Belchfire SOOs owned by persons with 16+ years of education.
OCR for page 361
AIDS SURVEYS ~ 361
Furthermore, the behaviors In question occur in private and cannot be
verified by direct observation or public records. Many of the behaviors
are actively concealed because they are considered illicit (IV drug use is
illegal throughout the nation, and many sexual behaviors of interest in
preventing HIV transmission are illegal in some states). Thus, the topics
these surveys cover are likely to be highly sensitive, which may create
difficulties in enlisting the cooperation of persons in a target sample and
in obtaining permission from "gatekeepers" (e.g., high school authorities)
who control access to particular populations (e.g., high school students).
This chapter considers these problems and reviews the available em-
pirical evidence gathered from surveys of sexual and drug use behaviors.
Before beginning this review, however, some cautionary words are in or-
der. The evidence presented here regarding errors in data about sensitive
behaviors might lead some readers to unwarranted and wholesale rejec-
tion of survey findings on these important topics.2 Indeed, considering
the litany of difficulties presented In this chapter, some readers may ask
whether anything at all can be learned from surveys or whether surveys
have a useful role to play In research on AIDS and HIV transmission.
The following considerations prompt the committee to answer "yes" to
these questions.
The most important consideration arises directly from the nature
of the disease. HIV infection occurs through the joint operation of the
biology of this particular infectious virus and the human behaviors that
transmit it. In the absence of vaccines, aZZ interventions that seek to
retard the spread of HIV infection focus on changing human behaviors
to diminish the probability that the virus will be transmitted. Data on
these behaviors are needed for a number of important purposes—for
example, to understand the factors that motivate and shape the behaviors
and to determine whether behaviors that transmit HIV are becoming less
frequent ir1 the population.
It might, of course, be argued that merely monitoring changes in the
prevalence of HIV would be sufficient to determine whether behavioral
change was occurring. Although this argument is true to some extent,
there are important deficiencies in any strategy that eschews direct mea-
surement of the behaviors themselves. Reliable data on HIV prevaler~ce
and incidence, although of great value for many purposes, are only a
final accounting of the number of infected and uninfected persons in the
population. From the viewpoint of prevention, such statistics serve best
as a catalog of failures. Yet, those who are uninfected are not necessarily
2The following pages borrow heavily from the discussion of errors in survey measurements in Turner
and Martin (1984:Vol. 1, 1016) and Turner (1989).
OCR for page 362
362 ~ AIDS: THE SECOND DECADE
successes. For example, the very low rate of HIV infection in states
like Wyoming does not necessarily imply that the population has adopted
protective behaviors. Instead, the Tow rate of HIv prevalence could be
attributable to an epidemiological happenstance (e.g., isolation in terms
of sexual contacts and injection equipment sharing from populations
with high HIV prevalence.)
Determining whether protective behavioral changes have occulted (in
Wyoming or anywhere else) requires asking questions about these risky
behaviors. This activity, in turn, raises a host of methodological issues
that are germane to survey research of all types plus some questions Hat
are specific to surveys of drug use and sexual behavior. The questions may
be quite basic: Are the respondents telling the truth? Do they understand
the meaning of the survey questions in the same way the investigator
does? Simple or complex, such questions inevitably introduce a degree
of uncertainty into the interpretation of all survey data. Grappling with
these issues forces an appreciation of the human interactions that produce
survey measurements.
Elsewhere it has been argued that fundamental aspects of the survey
process
are quintessentially social psychological in character. They arise from a
complex interpersonal exchange, they embody the subjectivities of both
interviewer and interviewee, and they present their interpreter with an
analytical challenge that requires a multitude of assumptions concerning,
among other things, how respondents experience the reality of the interview
situation, decode the "meaning" of survey questions' and respond to the
social presence of the interviewer arid the demand characteristics of the
interview. (Turner, 1984:202)
Although this "analytical challenge" may be substantial, researchers
are aided in their task by several decades of methodological research
(see, for example, Sudman and Bradburn t1974], Bradburn and SuUman
[19791, Rossi, Wright, and Anderson t1983], Turner and Martin [1984],
and Catania et al. Lin press,a,b]~. A further reason for not abandoning
behavioral measurement is that many of the problems encountered in this
arena are not unique. Useful lessons may thus be learned from other
disciplines that also confront such challenges.
FALLIBILITY OF MEASUREMENT IN OTHER SCIENCES
Fallibility and error are not confined to behavioral measurements, as
evidenced by the decade-Ion" controversy surrounding the population
OCR for page 363
AIDS SURVEYS ~ 363
statistics produced by the decennial censuses.3 Furthermore, just as falli-
bility of measurement is not limited to behavioral measurements, neither
is it limited to surveys or social statistics. For example, Hunter (1977)
and Lide (1981) have noted the vanability among measurements of such
elementary physical phenomena as the thermal conductivity of copper
(Figure 6-11. As Hunter observed, "although each analyst measured
a physical quality that did not vary with location or time, it is clear
that a remarkable variability attended the measurements" (1977:21. He
concluded: "The variation in attempting to evaluate the same physical
constant is obvious. This example is not unusual. Similar plots of thermal
conductivity as a function of temperature for approximately 400 common
metals and matenals can be found in a supplement to the Journal (Ho,
Powell, and Liley, 19741. Nor is the observed variation in the measure-
ment of 'thermal conductivity' unique among physical parameters . . .
(p. 21.
Common biological measurements have shown similar fallibility.
Examples include data collected by CDC that show substantial variation
in the estimates made by different laboratones of the amount of lead in
identical samples of blood. For a sample of blood with a putative lead
concentration of 41 milligrams per deciliter (mg/DI), 100 cooperating
laboratories produced measurements that ranged from 33 to 55 mg/DI;
this result prompted the reviewer to observe: "Clearly, whatever the
true amount of lead in a sample, the vanability demonstrated tin these
measurements] guarantees numerous false alarms or perhaps more im-
portant when the true level is high nonalanns" (Hunter, 1980:8701.
Another category of fallibility in the physical sciences involves "dis-
covenes" that are later shown to be expenmental artifacts. For example,
between 1963 and 1974 more than SOO journal articles (including some
in Science and Nature ~ discussed a supposed new substance: anomalous
water, or polywater. Although it resembled ordinary water, polywater
,,
allegedly had a~greater density, a reduced freezing point, and an elevated
boiling point, among other anomalous properties. In the end, however,
it was discovered that this "new substance'' was nothing more than an
impure solution of ordinary water (Franks, 1981; Eisenberg, 1981~.
Such examples indicate that the problems AIDS researchers confront
when they seek to assess sexual arid drug-us~ng behavior are not unique
in He urinals of scientific measurement. As Quinn McNemar observed
more than 40 years ago, "Lalll measurement is befuddled win error.
3By October 1981, more than 50 lawsuits had been filed challenging the accuracy of the 1980 Cen-
sus results and their use in legislative apportionment and fund allocation decisions (Citro and Cohen,
1985:9).
OCR for page 364
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AIDS SURVEYS ~ 365
About this the scientist can and does do something; he ascertains the
possible extent of the error, determines whether it is constant (biasing)
or variable, or both, and ever strives to improve his instruments and
techniques" (1946:294~.
In the following pages the committee reviews what is currently
known about the errors that afflict measures of sexual and drug-using
behavior and offers some prescriptions for how future measurements
might be improved. The first section of the chapter reviews the experience
to date in mounting surveys and obtaining responses from the public. The
second section considers the reliability and validity of responses obtained
in surveys of sexual and drug use behaviors. The final section reviews
the use of anthropological research strategies that may provide important
complementary information to that obtained in surveys and that may also
be crucial in questionnaire development to improve the accuracy and
completeness of responses.
RECRUITMENT OF RESPONDENTS IN
SEX AND SEROPREVALENCE SURVEYS
Much of what is now known about the epidemiology of AIDS has come
from small-scale, local studies among subgroups thought to be at high
risk for infection. Participants in these studies were recruited through
various sources and means from the clientele of local clinics or treat-
ment facilities or the membership rosters of local organizations, through
newspaper advertisements and physician referrals, and occasionally from
"street sampling." The yield from this research has been remarkably
rich. From these studies, researchers have identified the principal mecha-
nisms of HIV infection (i.e., transmission through sexual contact, sharing
injection equipment in IV drug use, transfusion of contaminated blood
products); verified sexual transmission of HIV from male to male, female
to male, and male to female; measured the efficiency of transmission in
specific kinds of sexual contacts; and discovered some of the basic fea-
tures of the long natural history of this devastating disease. As valuable
as these studies are, however, the data drawn from them cannot address
many other important public health questions that arise because of AIDS,
suck as: How large is the epidemic? What is the potential for general
spread of HIV infection? Can an HIV epidemic be sustained through het-
erosexual contact alone? To answer questions like these, the knowledge
gained from measurements and observations caIried out in local studies
of special subgroups must be applied in large-scale investigations of pop-
ulations chosen not because of convenient or ready access but because of
their importance in understanding the general course of the epidemic.
OCR for page 366
366 ~ AIDS: THE SECOND DECADE
This section considers the feasibility of sex and seroprevalence sur-
veys as a means of measuring the distribution of sexual behaviors that
risk HIV transmission and the distribution of HIV itself in general pop-
ulations. Although such surveys may be designed in a variety of ways,
all of the studies discussed here employ the same general procedures
for participant selection: an unambiguous definition of the population to
be studied and a form of sampling from this population that allows the
probabilities of selection to be known. The potential advantages of a
probability sampling program for selecting survey participants are well
known. In principle, probability sampling permits the use of a large body
of statistical theory to make inferences from the sample to the larger pop-
ulation and avoids the possible biases inherent in recruitment by other
means.
The suggestion to use probability sampling for surveys of sexual
behavior was made more than three decades ago in connection with a
review of the statistical methods used in Kinsey, Pomeroy, and Mar-
tin's Sexual Behavior in the Human Male (1948) (Cochran, Mosteller,
and Tukey, 19531. The authors of this suggestion were a committee
of the Commission on Statistical Standards of the American Statistical
Association. At the invitation of Dr. Kinsey and the National Research
Council's Committee for Research on Problems of Sex, they were asked
to provide course! on ways to improve the statistical methods used in the
Kinsey research. They recommended a step-by-step program of prob-
ability sampling, beginning with a small pilot effort. They argued that
research of this kind would provide a check on the results obtained with
Kinsey's large, nonprobability sample. The committee was aware Hat
problems of cost and potentially high rates of nonparticipation in such
surveys would present special challenges. Their comments about the
limits of this approach are worth quoting at length because the issues
they raised more than 30 years ago in relation to Kinsey's work remain
germane in evaluating the potential value of contemporary surveys of
sexual behavior.
In our opinion, no sex study of a broad human population can expect to
present incidence data for reported behavior that are known to be correct
to within a few percentage points. Even with the best available sampling
techniques, there will be a certain percentage of the population who refuse
to give histones. If the percentage of refusals is 10 percent or more, then
however large the sample, there are no statistical principles which guarantee
that the results are correct to within 2 or 3 percent, . . . but any claim that
this is true must be based on the undocumented opinion that the behavior of
those who refuse to be interviewed is not very different from that of those
who are interviewed. These comments, which are not a criticism of [Kinsey,
Pomeroy, and Martin's] research, emphasize the difficulty of answering the
OCR for page 367
AIDS SURVEYS ~ 367
question: "How accurate are the results?", which is naturally of great interest
to any user of the results of a sex study. (Cochran, Mosteller, and Tukey,
1953:675)
The rationale for using response rates as a "yardstick" to assess the
accuracy of survey estimates is twofold: (1) high response rates reduce
the influence of selective participation in surveys and hence the potential
for bias in the estimates, and (2) for a given target sample size and sample
design, the higher the response rate, the larger the actual sample and the
smaller the standard error of estimate. In other words, high response rates
are better than low rates, provided the procedures used to achieve high
response rates do not increase the degree of selectivity or inaccuracy of
the responses.
Few contemporary surveys on any topic achieve response rates higher
than the 90 percent figure cited in Cochran, Mosteller, and Tukey's
review of the Kinsey report; indeed, response rates in most surveys
are considerably below that mark. In principle, then, questions about
selective participation (i.e., about differences between respondents and
nonrespondents) are of concern in judging the accuracy of most survey
estimates, not only those that derive from surveys of sexual behavior.
Such concerns have generated a substantial literature on the character of
nonresponse in surveys and what to do about possibly biased estimation
resulting from nonresponse (see, for example, Goyder's 1987 synthesis
of nonresponse research and the series of volumes on incomplete data in
sample surveys edited by Madow, Nisselson, and Olkin t19831~.
Surveys with response rates that are much lower than 90 percent
may still provide useful estimates of population characteristics if it can
be established that participation or nonparticipation is unrelated to the
characteristic for which an estimate is sought. Furthermore, response
rates higher than 90 percent do not guarantee accurate estimation if
survey participation is highly selective. Thus, in most cases, the value
of the response rate by itself is insufficient justification for claims of
accuracy or "representativeness" of survey estimates or for counterclaims
that estimates fail in this respect. Such claims should be based on careful
study, documentation, and possibly adjustment for bias as a result of
refusals and other sources of nonresponse.
In the following review, the committee examines recent efforts to
survey sexual behavior and related HIV risk factors that use probability
samples from general populations. The review focuses on participation in
such surveys and is motivated by the same concerns about nonresponse
in probability samples that were expressed in the review of the Kinsey
report. It attempts to answer three main questions: (1) What response
OCR for page 368
368 ~ AIDS: THE SECOND DECADE
rates have been achieved in recent surveys of sexual behavior? (2) What
survey designs and procedures appear to be associated with higher versus
lower levels of participation? and (3) What can be said, at present,
about differences between sample persons who participate in sex surveys
and sample persons who refuse to participate or do not participate for
other reasons? (There is as yet too little information to hazard general
statements about differences between participants and nonparticipants in
seroprevalence surveys.) Questions about the validity and reliability of
survey responses about sexual behavior, which were also noted in reviews
of the Kinsey report, will be discussed in the later sections in this chapter.
Scope of the Review
The committee chose 15 surveys for its review, including some that
are national in scope and some that target local populations. Most of
these studies were initiated after the AIDS epidemic began in response
to the need for population-based estimates of sexual behaviors known to
be associated with HIV transmission. Both telephone and face-to-face
interviewing methods are represented, along with data collection through
self-administered questionnaires. There are wide variations among the
surveys in the proportion of questions they devote to measuring sexual
practices and other risk behaviors. Four surveys were included because of
their potential importance for monitoring the prevalence of HIV Infection;
these surveys attempted to collect a blood specimen for HIV serologic
testing from each sample person.
The committee used four criteria for including studies In its review:
(1 ) there was at least a minimal attempt to collect data on personal sexual
behavior and, in some cases, other HIV risk factors as well; (2) some
form of probability sampling was employed; (3) a response rate of the
form (number of survey participants)/(number of sample persons) could
be calculated; and (4) enough documentation was available to identify the
principal characteristics of the survey design and sampling procedures.
Information about the designs, sampling procedures, and participation
rates of these surveys appears in Table 6-~.
For the most part, the committee collected information about these
surveys from published accounts in books, journal articles, and survey
field reports. (The source documents are cited in Table 6-1.) OccasioIl-
ally, it was necessary to rely on conversations with survey field managers,
especially for surveys that had been completed at the time of this writing.
In several other cases, documentation is partial because of incomplete
reporting or recor~keeping, or both. For these reasons, and because the
total number of surveys is small, the committee has not attempted a
OCR for page 369
AIDS SURVEYS ~ 369
statistical analysis of participation rates in relation to survey characteris-
tics. Nevertheless, the review does identify differences in response rates
in sex surveys that appear to be associated with procedural and design
vanations. It also reveals several opportunities for learning more about
patterns of participation and nonparticipation.
Participation in Sex Surveys
Data Collection Procedures and Response Rates
Each of the surveys listed in Table 6-1 asked respondents to report on
certain aspects of their past and present sexual behavior. For the most part,
the questions used in recent surveys (i.e., those initiated after the AIDS
epidemic began) attempt to measure the occurrence of sexual behaviors
associated with HTV infection and transmission and fall into three general
categones: sexual orientation (with a focus on homosexuality), selection
of sexual partners (number and characteristics of partners, presence of
same-sex partnerships), and manner of sexual intercourse (e.g., anal,
vaginal, oral). Because of the sensitive and highly personal nature of
these questions, virtually all of the surveys made some provision to
permit respondents to reveal the details of their sexual behavior without
undue embarrassment or fear of disclosure to third parties. Most of the
surveys included one or more of the following: special guarantees mat
responses would be kept confidential; assurance of anonymity that is,
that the person viewing the results would not know the identity of the
respondent; privacy during the interview; and placement of the sensitive
questions near the end of the interview.
Apart from these similanties, the 15 surveys differ widely with
respect to basic methods of data collection and number of questions
about sexual behavior. Interviewing was conducted by telephone in four
of the surveys (nos. 3, 4, 9, and 10 in Table 6-1), by face-to-face interview
in five cases (nos. 7, 8, 12, 13, and 14), and by a combination of face-
to-face interview and self-administered questionnaire (SAQ) in six (nos.
I, 2, 5, 6, Il. and 151. Virtually all of the surveys that contained Tong,
detailed inventories of sexual questions were conducted through face-to-
face or telephone interviews. When SAQs were used, the length of the
self-administered forms varied considerably (some did not exceed ~ or 2
pages whereas others [e.g., survey no. 1] were more than 10 pages long).
The most frequently used data collection procedure was a face-to-
face interview followed by a relatively brief SAQ that focused on sexual
behavior. In all instances, after the respondent completed the SAQ, it
was placed in an envelope (stripped of identifying information except
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462 ~ AIDS: THE SECOND DECADE
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Representative terms from entire chapter:
drug users
