(pp. 1-9) This report presents the results of a comparative case
study of local-level syphilis prevention efforts that are conducted
as part of STD prevention programs supported by the US Centers for
Disease Control and Prevention (CDC). The case studies were conducted
in eight communities in four southern states: Alabama, Mississippi,
South Carolina, and Tennessee. The project investigated past and current
responses of the public and private health sectors, and of other community
organizations, to a syphilis epidemic observed in the Southern States
between 1990 and 1992. The project focused on groups at high risk of
becoming infected with syphilis, the extent to which public health
activities target such groups, and what factors affect the reach of
services to this population.
II. Evaluative Objectives
(p. 10) Specific objectives of this study were to develop an understanding
of service delivery to persons at high risk of becoming infected with
syphilis in affected communities; to discover innovative syphilis prevention
and control measures currently being planned or implemented in southern
states; and to generate recommendations for improving community-level
prevention strategies.
III. Methodology
(pp. 11-25) A case study protocol was developed laying out criteria
for the selection of study sites and specifying data collection and
data analysis procedures. Study instrumentation and coding criteria
were constructed as part of the study protocol.
Case studies were conducted in four states: Alabama, Mississippi,
South Carolina, and Tennessee. Criteria considered in selecting states
and communities within states included syphilis epidemiology (consistently
high syphilis case rates since 1990 or syphilis rates that show a decrease
suggestive of successful control activities) and known demographic
indicators of high syphilis risk (a significant number of African-American
residents and a non-negligible proportion of households with incomes
below the poverty level). In Alabama, Mississippi and South Carolina,
we paired a major metropolitan area with a rural counterpart to enable
an urban/rural comparison of social contexts and public health activities.
In the Mississippi Delta, we paired metropolitan Memphis, Tennessee,
and the northwestern counties of Mississippi.
Prior to on-site data collection, we created a descriptive profile
of the community, identified individuals to be interviewed, and made
arrangements for interviews. Background information about each community
was obtained through a review of published literature and unpublished
agency reports and planning documents. We contacted the state STD program
to arrange an interview at the state level and to solicit cooperation
for local site visits.
Data were collected in week-long site visits. We interviewed between
40 and 60 persons at each site from three major categories of interviewees:
(1) public health providers, (2) other health care providers, and (3)
representatives of the community, including providers of community-based
services and consumers of health care. Interviewees were identified
using a networking technique starting with referrals from STD staff.
Open-ended interviews focused on who is at greatest risk for syphilis
transmission and infection, what institutions are best able to reach
these individuals, what barriers stand in the way of reaching at-risk
individuals and any innovative ideas or activities that STD prevention
programs in other locales might find useful.
The research questions, interview questions, and code variables that
drove the research process were developed into an analysis plan for
case studies and final report. Data were analyzed for coded text variables
using a test analysis system (The Ethnograph?). Interview notes
were coded based on the study questions and emergent issues, using
a code book derived from the study protocol and based on the research
questions. A descriptive case study was prepared for each study site
using interview data and information from the background document review.
Study findings were derived by comparing across all sites on the basis
of research questions specified in the research protocol, built into
the interview instruments, and indexed by the codebook.
Quality control measures were taken to protect the reliability and
validity of the results. Reliability was maintained by adherence to
the study protocol and careful steps to minimize deviations from the
protocol. We know of no events in the field that were a serious deviation
from standard procedures. We are reasonably certain that replication
of this study in other communities would not lead to fundamentally
different conclusions. We took steps to verify the accuracy of our
data throughout data collection and data analysis.
There were multiple interviewers for almost all interviews, providing
an ongoing check for validity and reliability of data collection. The
case studies for each site were sent to leaders in the state and local
STD programs interviewed in that site so that they could fill in any
missing information, correct any misunderstandings, or add comments.
To assure accurate operational definition of the study, we sought
input from CDC and from knowledgeable researchers in other institutions
in conceptualizing our study and in accessing existing sources of data
on the study topic. Our method for networking to ascertain informants
within communities was exhaustive, yielding a large number of interviews
through repeat referrals.
This study was restricted to the question of health services delivery
and drew on the judgment of individuals with specialized knowledge
of service needs and barriers in populations judged to be at high risk
of syphilis infection. We did not interview actual or potential service
users on these issues. A client perspective could have validated the
perceptions of service providers and might have uncovered differences
in perspective with policy implications for service delivery.
Generalizability of this study to other settings depends on bias
introduced by purposive site selection. It is to protect generalizability
that we were careful to specify criteria for site selection prior to
identifying any specific sites for data collection. The units eligible
for this study were communities in ten southern states identified by
CDC on the basis of high syphilis morbidity during the 1990 epidemic.
There were multiple sites that met these criteria, and choices were
made to include some rather than others for reasons of convenience.
However, we know of no systematic bias introduced by this procedure.
IV. Major Findings and Recommendations
(pp. 65-104) Findings
Study findings were developed around four key questions:
Who is at greatest risk of syphilis infection and transmission?
What institutions are best able to reach those at greatest
risk?
What are the barriers to syphilis prevention and control
in communities?
What innovative ways have been found to transcend these
barriers?
(pp. 65-72) Who is at greatest risk? Almost everyone
we interviewed could identify categories or groups of individuals whom
they felt to be at high risk of acquiring or transmitting syphilis, but
practically no one uses the term ?core transmitter? to describe them.
Terms used by our respondents included: high-risk population, high-risk
group, target population, target group, people at greatest risk, at-risk,
and usual clientele.
Our interviewees perceived that African Americans are the demographic
group at greatest risk of syphilis infection. The exchange of
sex for drugs, especially when related to crack cocaine use,
was considered an important risk behavior, although our informants
distinguished between high-risk sex-for-drug exchanges and lower
risk commercial prostitution. It was felt that prostitutes were
more likely to remain disease-free as a matter of good business
practices. Homeless persons and individuals who experience periods
of incarceration were also felt to be reservoirs of infection
for populations connected to them.
High-risk sexual behaviors among adolescents were often discussed,
not because current cases of syphilis are common in this group;
but, because teenagers engage in serial relationships involving
unprotected sex, a high-risk behavior likely to result in syphilis
when they move into their 20s. This is also the age group in
which patterns of sexual behavior are established and in which
prevention may be maximally effective.
Male homosexuals were considered to be less important as a reservoir
of infection than they were in the past, although homosexual
or bisexual contacts in high-risk groups (substance abusers,
inmates) further increases transmission in these groups.
(pp. 72-79) What institutions are reaching those at risk? Local
health departments are the only community organizations that focus directly
on syphilis (and other STD) control and prevention. Other organizations
offer STD diagnosis and treatment services, but?with the exception of
corrections institutions and federally funded health clinics?are limited
in the extent to which they provide for partner notification and contact
tracing.
Public health agencies in the communities we visited tended
to assign priority to disease control and engaged in few agency-based
prevention activities. In all communities we visited, individuals
told us that they delivered prevention information and messages
on a voluntary basis in a variety of community settings.
Schools were the community institution that most consistently
arose as a venue for STD prevention messages. The content of
prevention delivered by the schools was limited by local restrictions
on sexually explicit material in health education curricula.
Churches were very effective at delivering prevention programs
in some communities, but in others they represented significant
barriers to any discussion that impinged on issues of human sexuality.
Community-based organizations have helped to improve the accessibility
of clinical services to high-risk groups but have done little
to reduce the risk of syphilis transmission by sponsoring health
promotion programs. CBOs working with HIV/AIDS serve as a source
for referral of syphilis cases to the health department.
(pp. 79-86) Barriers to reaching those at greatest risk. Barriers
to reaching those at greatest risk of syphilis infection are cultural,
programmatic, and political.
Cultural barriers include restrictive local norms about public
discussion of human sexuality, distrust of the public health system
among African-Americans, and a low priority of health relative
to other issues of poverty in the community.
Conservative social norms in southern communities make it very
difficult to talk about sexual behavior in schools, churches, or
almost any other public forum.
Distrust of the public health system among African Americans is
an important barrier that cross-cuts all categories of risk behavior.
The perception that health department staff neither respect nor
understand the concerns of African-American clients is reinforced
by the insensitive treatment of African Americans in some clinics.
Our respondents felt that most people in the African-American community
are not aware of the details of the Tuskegee Syphilis Study. However,
it is seen as just one example of the history of mistreatment of
blacks by a white power structure, and a reason to not trust the
government in general and the public health system specifically.
The prevention and control of syphilis and other STDs tends to
have a low priority for organizations that must address the entire
range of poverty issues in the South. Prenatal and neonatal care
are seen as more pressing health problems. Cardiovascular disease,
teen pregnancy, diabetes, and cancer are other problems identified
as having a higher priority especially within the African-American
community.
Access of the poor to all medical services is a problem in all
of the communities we visited, but is especially limited in rural
areas. The region suffers from a shortage of providers and facilities,
instability in staffing for both public and private health clinics,
and a lack of transportation. Inconvenient hours of operation and
costs are barriers to working people, teenagers, and the poor.
A lack of trained minority staff discourages utilization by African-American
clients. Satellite clinics have improved access in some communities
but have had a limited impact on utilization.
Women have special problems. Their access to services is limited
by the need for child care and transportation. They have multiple
health needs that are addressed by more than one categorical program
and may be required to go from one agency to another seeking services.
Co-morbidities, such as domestic violence and substance abuse,
complicate prevention and treatment. Mothers needing child care
have almost no access to substance abuse treatment.
Mobilization of community organizations to address these issues
was limited in the communities we observed. The organizational
collaboration that does exist is usually focused around treatment
of STDs rather than around prevention.
(pp. 96-102) Innovations in STD Control and Prevention. We
found innovative measures that had been developed to improve syphilis
and other STD prevention and control programs.
A South Carolina program is planned that will overcome barriers
to the mixing of program funds by integrating a menu of services
for women into a single Women's Health Center. This will not only
eliminate ?run arounds? to multiple agencies but also will separate
female patients from the older males who make up the STD Clinic
patient population. Another innovative program to address an important
gender issue is an Alabama program to create clinical protocols
to educate clinic staff on how to recognize signs of domestic violence.
In South Carolina, assignment of DIS to specific geographic areas
or institutions helped them to become more effective by developing
a deeper knowledge of their defined areas of responsibility.
There are model efforts to integrate training across agencies
that are in contact with high-risk populations. For example, corrections
officials and substance abuse treatment case managers are being
taught how to screen for STDs, to provide prevention information,
and to refer cases appropriately.
Most communities tried to build STD prevention messages into school
health education curricula to the extent possible within local
norms. However, in some communities, curriculum developers had
gone beyond the schools, bringing in parents, churches and other
important community institutions to reinforce the prevention message.
In Alabama, ?natural helpers? are used to deliver prevention information
and support to others in their community who are like themselves.
This innovation is very low-cost and serves to bridge the distrust
that keeps many African Americans from approaching providers they
perceive as different from themselves.
In all of the localities we visited, we found organizations that
had arisen to address the broad problems of poverty at the community
level. These organizations can be a powerful influence in the prevention
of syphilis cases if they can be helped to understand the consequences
of syphilis, especially on genital syphilis, for the overall welfare
of the community.
(pp. 108-112) Recommendations
We have tried to focus recommendations from this study so that
CDC can implement them within available means for reaching programmatic
staff at state and local levels. CDC's role in syphilis prevention
and control is exercised through training programs, technical assistance,
development of guidelines, and the dissemination of technical information
to public health practitioners. We recognize that the division
of labor among the federal, state, and local public health agencies
changes daily, as does the technology and organizational knowledge
available to improve programs. For this reason, we have phrased
our recommendations in terms of what CDC can do rather than how
they should go about doing it. Mechanisms for CDC action will need
to be chosen from the array of tools available at the time these
recommendations are implemented. We organized our recommendations
into steps to improve syphilis prevention, steps to improve access
to services, steps to improve program operations, and steps to
improve contact tracing/ partner notification.
(pp. 109-110) Steps to Improve Syphilis Prevention
CDC should provide technical assistance to state and
local health departments seeking to improve community involvement
in syphilis and other STD prevention efforts. Our
data show that involvement of community organizations in the
delivery of prevention messages can be an effective way to
reach people who are engaged in high-risk behavior patterns.
CDC is in a position to support local leadership in mobilizing
their communities by providing technical assistance to health
agencies seeking to foster broad community involvement in achieving
their own objectives. Outreach to community organizations should
extend beyond CBOs directly involved in bringing high-risk
individuals to treatment. A focused effort is needed to add
syphilis prevention to the agenda of organizations that have
earned the trust of target populations because they address
significant poverty issues. State and local health officials
must define an appropriate role for CDC in these state and
local activities.
(pp. 110-111) Steps to Improve Access to Services Needed to
Control Syphilis
CDC should continue and expand its efforts to confront
directly the issue of distrust of the public health system
among African-Americans in the South. Possibly one
of the most significant barriers to controlling syphilis in
the South is the prevailing attitude of distrust among the
African-American population in which much of the morbidity
is found. CDC currently maintains an information office to
provide information and materials on issues such as the Tuskegee
Syphilis Study. We encourage CDC to maintain an attitude of
openness about the wrongs of the past and the persisting difficulties
of the present in treating African-American clients in culturally
sensitive ways. An open dialogue on this problem is not a sufficient
means of solving the problem, but it is a necessary condition
for improvement in the conditions that reinforce the attitude
of distrust in this important group.
CDC should develop guidelines and recommendations to
help overcome barriers to utilization of clinical facilities. Our
data showed that inconvenient hours of operation, lack of transportation,
and lack of child care are barriers to use of available facilities
for diagnosis and treatment of syphilis and other STDs. CDC
can issue guidance to state and local health departments seeking
creative ways to handle these issues. Clinics that do not offer
flexible hours to serve patients outside the regular working
day can be encouraged to adopt hours of operation that can
accommodate more people. Local health agencies can be encouraged
to explore other health and human service programs in their
localities for existing transportation systems. CDC might encourage
public health agencies to explore the feasibility of establishing
on-site child care services as a way to support effective follow-up
to contact tracing and partner notification efforts. This could
be facilitated by integration of multiple services needed by
women and children into central facilities, such as women's
health centers. Also, state and local health departments should
be encouraged to waive co-payments for sites where these are
a barrier to adolescents and people living in poverty.
CDC should promote gender-sensitive STD prevention
programs that take into account the special problems of women. Our
data suggest that the access of women to prevention and control
services could be improved by providing child care at clinic
sites, or by incorporating STD services into the broader array
of services offered in women's health clinics or in maternal-child
health settings.
CDC can encourage state health agencies to evaluate
the feasibility of implementing protocols to address domestic
violence as part of the delivery of women's health services. Domestic
violence is a larger issue than STD prevention. However, STD
can occur in an atmosphere of violence in which coercive relationships
act as a barrier to women using preventive measures, such as
condoms to protect themselves from high-risk encounters. Shelters
that provide services to women should be brought into community
efforts to support STD prevention and control. Model protocols
for handling domestic violence, such as that adopted in Montgomery
County (Alabama), could be disseminated more widely.
(pp. 112-113)Steps to Improve Program Operations
CDC should encourage state health departments to explore
with other agencies ways to remove programmatic restrictions
to delivery of health services in integrated facilities. Programmatic
funding restrictions mean that individuals must schedule multiple
appointments for different types of services. Categorical programs
inhibit clients from taking advantage of clinical encounters
to address health problems found in populations at elevated
risk of syphilis. In developing guidance, CDC should suggest
that health departments consider coordination of services in
health facilities that seek to meet the needs of individuals
with multiple problems.
CDC should encourage state and local health departments
to accelerate efforts at minority staff recruitment, training,
and retention. Expansion of the minority representation
in the group of providers delivering STD prevention and control
services will go a long way to improving accessibility and
acceptability of these services to minority populations. CDC
might issue guidance to state health agencies for the development
of specific ways to emphasize and evaluate minority staff recruitment,
training, and retention.
CDC should encourage cultural competency training for
public health staff who administer public health programs. Increased
cultural competency among administrators can lead to an agency
approach that takes into account differences in perspective
among staff and clients, leading to more effective problem-solving
approaches. CDC could incorporate cultural competency into
training programs over which it exercises an influence. CDC
can also encourage state public health agencies to include
improved cultural competence objectives in their strategic
planning.
CDC should encourage STD-specific training for health
care and case management staff at corrections facilities and
substance abuse treatment centers. Corrections facilities
and substance abuse treatment programs are two settings where
significant numbers of people at risk for syphilis infection
are found. CDC has already begun to develop guidance for health
workers in corrections facilities and substance abuse treatment
centers. We recommend that CDC continue to pursue opportunities
to help public health agencies to develop and deliver STD prevention
and control training at frequent intervals to corrections medical
and nursing staff and to case managers in substance abuse treatment
programs.
CDC should continue efforts to encourage STD-specific
training at professional schools. CDC should continue
their efforts to improve the competence of health professionals
in STD prevention and control by such mechanisms as training
grants to professional schools and faculty enhancement grants.
They should take special care to foster the inclusion of appropriate
training into the curricula for nurses and physician assistants,
and also into continuing medical education courses.
(pp. 113-114)Steps to Improve Contact Tracing/Partner Notification
CDC should promote improvements to electronic data
exchange and telecommunications support for state and local
public health agencies. An important barrier to effective
syphilis control is limited access to the hardware and software
needed for adequate identification, tracking, and contact tracing
of individuals identified as being infected. CDC can identify
technical expertise to help develop specifications for systems
to support surveillance and contact tracing and to provide
recommendations for how such systems should be used and by
whom.