Executive Summary

I. Statement of the Problem

• 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

• 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

• 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

• 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?
• 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.

• 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.

• 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.

• 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.

• 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.

• 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.
• 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.
• 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.
• 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.