Chapter 5.0 Discussion and Recommendations
In this section, we discuss our findings and develop conclusions. In the last portion of this section, we recommend ways in which CDC can encourage state and local STD staff to improve their programs to prevent and control syphilis as well as other STDs. For a summary of recommendations see Table 5.1
Below we discuss our findings in each of the categories used to structure the previous sections 3 and 4:
Who is at greatest risk?
What institutions are reaching those at greatest risk?
What are the barriers to syphilis prevention and control?
What innovative ways have been found to transcend these barriers?
5.1.1 Who is at greatest risk?
The perceptions of our interviewees supported the observation that African Americans are the demographic group at greatest risk of syphilis infection. But we must look deeper to understand why this is so. Most of the risk factors for syphilis that emerged from our study - substance abuse, poor utilization of health care, homelessness, incarceration - are correlated with poverty, also prevalent among African Americans in the southern states. Syphilis in the South is a disease of poverty.
Exchanges of sex for drugs are perceived to be an important risk behavior, although our informants distinguished between high-risk sex-for-drug exchanges and lower risk commercial prostitution. High-risk sexual behaviors among adolescents was often discussed, not because current cases of syphilis are common in this group, but because this group has a high incidence of gonorrhea and chlamydia. This implies that they are engaging in behaviors that will result in syphilis when individuals "mature" into the high-risk group in their 20s. Women will be especially vulnerable to producing cases of congenital syphilis if they persist in their current sexual practices.
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 increase transmission in these groups.
5.1.2 What institutions are reaching those at risk?
Our data show that 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. Private practitioners in urban areas may treat presumptively and fail to report cases. A lack of electronic means of communication among health providers limits the effectiveness of contact tracing and detection of repeat infections.
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 and/or one-shot basis in a variety of community settings. But we saw little evidence for programmatically driven, community-based health promotion.
Middle and high schools were the community institution that most consistently arose as a venue for STD prevention messages, delivering prevention to adolescents, who are not the risk group for syphilis but will likely enter it in their 20s and 30s if their high-risk behaviors persist. The content of prevention delivered by the schools was often limited by local controls on the content of 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, mobilized to address other problems of poverty, 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 of referral of syphilis cases to the health department.
5.1.3 What are the barriers to reaching those at greatest risk?
Barriers to reaching those at greatest risk of syphilis infection and to preventing others from becoming infected 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. People are often creative in finding ways around this by political maneuvering. Nonetheless, this barrier creates an inhospitable atmosphere for prevention programs.
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.
Prevention and control of STDs tend to have a low priority for organizations that must address the entire range of poverty issues in the South, the poorest region in the United States. Prenatal and neonatal care are seen as more pressing problems. Cardiovascular disease, teen pregnancy, diabetes, and cancer are problems identified especially within the African-American community. Even within STD programs, prevention is accorded a lower priority than diagnosis, treatment, contact tracing and partner notification.
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 public health clinics, and a lack of transportation. Inconvenient hours of operation and costs are barriers to young people as well as to those who are 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 that need to be addressed as women's issues. Their access to services is limited by the need for child care and transportation. They are sometimes uncomfortable sharing STD clinic facilities with adult males. They have multiple health needs that are addressed by more than one categorical program. This means that, when they seek services, programmatic restrictions may lead to a "run around" as they go from one agency to another. "Co-morbidities" such as domestic violence and substance abuse complicate prevention and treatment. Mothers needing child care have almost no access to residential substance abuse treatment.
Mobilization of community organizations to address these issues was limited in the communities we observed. We saw organizational collaboration in some communities, usually focused around treatment of STDs rather than around prevention. But joint activities of public health agencies and community-based organizations were rare, often because of a low priority of health on the agenda of the CBO.
5.1.4 Innovations in STD Control and Prevention
Despite the persistence of barriers to effective prevention and control, we found innovative measures that had been developed to improve syphilis and other STD prevention and control programs.
A South Carolina program in the planning stages 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 not only will eliminate "run arounds" to multiple agencies but also will separate female patients from the older males who make up the STD Clinic patient population. This will make the waiting room more comfortable, especially for young women. This kind of planning is a model for gender-sensitive programming. Another innovative program to address an important gender issue is an Alabama program to create 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.
One lesson of this study is that communities do well to bring all of the resources they can identify into developing and disseminating prevention. One especially important example is the use in Alabama of "natural helpers," members of the community who are trained and capable of delivering prevention information and support to others in their community who are like themselves. This innovation is very low-cost and could serve to bridge the distrust that keeps many African Americans from approaching providers they perceive as different from themselves.
Our evidence and the experience of others who have studied the problem of syphilis in the South show that syphilis is merely one of a constellation of problems that arise from poverty. 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 made to understand the consequences of syphilis, especially congenital syphilis, for the welfare of the community.
In developing recommendations from this study, we found ourselves faced with a dilemma. To be useful for CDC, our recommendations must focus on ways in which CDC can act to improve syphilis prevention and control. Yet our evidence demonstrates that the activities undertaken to achieve syphilis prevention and control objectives occur largely at the local level. In this area of increasing decentralization of health services, CDC's ability to intervene directly in local programs is limited.
We have tried to focus our recommendations so that CDC can move to 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, guidelines, and the dissemination of technical information to public health practitioners. CDC maintains a training network capable of disseminating information and guidance to health departments. CDC technical guidance comes to public health staff in documents, workshops, and prevention materials.
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 precisely 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 have organized our recommendations into steps to improve
Access to services needed to control syphilis,
Program operations, and
Contact tracing/partner notification.
5.2.1 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. But community systems do not come together without skilled leadership. It is not a simple thing to link organizations together so that they can exchange information, build joint activities, share resources, and enhance their own and others' capacity to achieve a common purpose. Without training and experience in community organizing, community initiatives often fail for reasons that could have been prevented by appropriate technical assistance.
CDC programs and staff have experience in community mobilization to achieve health promotion and disease prevention objectives. CDC is in a position to support local leadership in mobilizing community leaders 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 poverty issues that are significant to the community.
State and local health officials must define an appropriate role for CDC in these state and local activities. CDC might develop materials offering guidance to local health departments, establish a workshop series to articulate possible models of community involvement, or provide technical assistance through state assignees or the equivalent of Epi-Aids for community organizing.
5.2.2 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. We recognize that these are community-wide problems that cannot be resolved by the public health system alone. However, some can be addressed by making better use of existing facilities or by combining services to reduce barriers. 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. Even patients without daytime jobs may find it easier to arrange transportation or child care for an appointment that does not conflict with a working family member or neighbor's schedule.
Residents in rural areas cited limited transportation as a barrier to accessible health care. Local health agencies can be encouraged to explore other health and human service programs in their localities for existing transportation systems. For example, some communities operate transportation systems to bring people to town for WIC evaluations. The approach to transportation fleet management used by West Alabama Health Services and OCAB Community Action Agency is a model that is well suited to other underserved rural areas.
We heard from DIS staff that patients are reluctant to schedule appointments, or fail to keep appointments, because of difficulties they encounter in arranging for child care. We also heard that DIS staff sometimes are unable to attend to other responsibilities because they must look after young children that accompany patients to an appointment. We recommend that CDC 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.
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 may hinder to women from using preventive measures such as condoms, or 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. CDC can encourage state health agencies to evaluate the feasibility of implementing such protocols as part of the delivery of women's health services.
5.2.3 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.
Members of groups that are at high risk of syphilis infection have multiple health problems. Yet we found that programmatic funding restrictions mean that individuals must schedule multiple appointments for different types of service. A similar barrier to service utilization may be created by the use of stand-alone facilities dedicated to STD/HIV treatment. These kinds of categorical programs inhibit clients from taking advantage of clinical encounters to address health problems found in populations at elevated risk of syphilis. The linkage of syphilis, congenital syphilis, and pre-natal care is one obvious example of a situation requiring coordination of services in health facilities that seek to meet the needs of individuals with multiple problems. In developing guidance, CDC should suggest that health departments consider coordination of services targeted to high-risk population groups.
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. We were told consistently across all of the states about a popular perception that clinic staff members are mostly white, while most patients are African American. To counteract this perception, 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.
The value placed on cultural competence in agencies is likely to depend on the degree to which it is valued by those who oversee agencies, develop agency routines and hire agency staff. For this reason, the greatest gains in cultural competency will come from creating and fostering culturally sensitive program administrators. Increased cultural competency among administrators can lead to an agency approach that takes into account differences in perspective among staff and clients and can lead to more effective problem-solving approaches. CDC could move to 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. In addition, these organizations often have data bases in place permitting studies of syphilis epidemiology in large populations.
CDC has already begun to develop guidance for health workers in corrections facilities and substance abuse treatment centers. For example, there is presently a joint program between CDC and SAMSHA to work with substance abuse organizations to improve control of STDs and HIV.
We recommend that CDC continue to pursue opportunities to help public health agencies 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 has worked for some time to encourage health professional schools to incorporate training in STD prevention and control into their curriculum using such mechanisms as training grants to professional schools and faculty enhancement grants. They have also developed training programs to enhance STD-specific capacity of practicing professionals in schools of public health and medical schools. CDC should continue these efforts, taking special care to foster the inclusion of appropriate training into the curricula for nurses and physician assistants, and also into continuing medical education courses.
5.2.4 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. Lack of effective data management and data exchange makes it more difficult to interrupt the chain of transmission surrounding individuals and to detect and counter emergent outbreaks. In addition, inadequate computer facilities result in an inefficient use of valuable DIS time, as workers must wait in line to obtain information and complete necessary case processing.
Ideally, each DIS should have a computer work station properly and securely equipped to allow interview records to be entered electronically; to complete electronic file transfers from hospitals and other health care providers for treatment verification and follow-up; to locate relevant information resources on the Internet, and to correspond electronically with a variety of potential collaborators locally, statewide, and throughout the region.
To some extent this is a problem beyond CDC's control, since truly effective data exchange requires adequate computer capacity for all providers who diagnose cases of syphilis. However, 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.