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The Tuberculosis Behavioral and Social Science Research Forum Proceedings

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Section I. Introduction and Background

Background

Behavioral and Social Sciences in Disease Prevention

Behavioral, psychosocial, and socio-cultural factors related to lifestyle contribute to many of the major causes of morbidity and mortality in the United States (Schneiderman, et. al, 2001). The past 50 years have shown that to adequately address many health problems, social science theories and methodologies must be incorporated into the design of effective interventions and prevention activities. In fact, many of today’s public health challenges require the utilization of behavioral and social science to address a wide range of health problems ranging from cardiovascular health, smoking, obesity, and unintentional injuries, to infectious diseases such as HIV/AIDS and TB.

The U.S. National Institutes of Health (NIH) defines behavioral and social sciences research as a large, multifaceted field, encompassing a wide array of disciplines. The field employs a variety of methodological approaches including surveys and questionnaires, interviews, randomized clinical trials, direct observation, descriptive methods, laboratory and field experiments, standardized tests, ethnography, and evaluation. Yet, behavioral and social sciences research is not restricted to a set of disciplines or methodological approaches. Instead, the field is defined by substantive areas of research that transcend disciplinary and methodological boundaries. In addition, several key cross-cutting themes characterize social and behavioral sciences research. These include an emphasis on theory-driven research; the search for general principles of behavioral and social functioning; the importance ascribed to a developmental, lifespan perspective; an emphasis on individual variation, and variation across socio-demographic categories such as gender, age, and socio-cultural status; and a focus on both the social and biological context of behavior (http://obssr.od.nih.gov/Content/About_OBSSR/BSSR_Definition/).

Our understanding of public health problems, as well as our identification of ways to address them, is informed by the application of behavioral and social sciences. Behavioral and social science research plays a critical role in developing, implementing, and evaluating disease control and prevention programs. In particular, it is clear that health programs are more likely to be effective if they are based on a clear understanding of the targeted health behaviors and the environmental context in which they take place (Glanz et. al, 1990, Snider and Satcher, 1997). Further, social science research can contribute to a better understanding of how operational and infrastructural factors may impact the control or prevention of a health problem.

Behavioral and Social Science Research at CDC

As a result of lessons learned over the past two decades, the CDC has expanded its focus from a traditional epidemiological and biomedical approach to one that increasingly incorporates the behavioral and social sciences. This shift is a recognition that the solutions to many of today’s public health problems require the application of multi-disciplinary research focusing on behavioral, societal, and cultural factors of individuals, groups, organizations, as well as health systems. The application of behavioral and social sciences in the development, implementation, and assessment of prevention programs helps the public gain a better understanding of risk group characteristics in addition to the frequency, context, and determinants of risk behaviors (Snider and Satcher, 1997).

CDC has taken steps to integrate behavioral and social sciences into prevention activities throughout the agency resulting in programs that vary by organizational setting and substantive focus. The incorporation of a behavioral and social science perspective into CDC’s work can be seen in areas such as the development of surveillance systems, risk factor identification and determinants research, and intervention testing (Galavotti et. al, 1997). CDC has also realized the importance of establishing partnerships with other organizations, such as with professional societies including the American Psychological Association, the American Anthropological Association, and the American Sociological Association, to expand the role of behavioral and social sciences in co-sponsored educational activities (Snider and Satcher, 1997).

In addition, the expansion of CDC behavioral and social science activities can be further evidenced by the establishment in 1995 of a CDC Behavioral and Social Science Working Group (BSSWG), whose mission is to further the understanding and use of behavioral and social science at CDC, as well as to promote and ensure excellence in behavioral and social science research throughout the agency (Snider and Satcher, 1997).

Behavioral and Social Science Research in the National Center for HIV, STD, and TB Prevention (NCHHSTP)

Within CDC’s National Center for HIV, STD and TB Prevention (NCHHSTP), behavioral and social science research has become increasingly recognized as critical to the improvement of efforts to prevent and control these three public health areas. This is particularly true for HIV prevention, where behavioral interventions that seek to reduce risky behaviors offer the most commonly recommended methods to stem the epidemic. Transmission of HIV and other sexually transmitted diseases (STDs) have been reduced by applying effective behavioral interventions that address sexual and drug-using behaviors. Although tuberculosis’ airborne mode of transmission places it in a different category from HIV and STD control in terms of behaviors that put people at risk and can thus be targeted for interventions, behavioral and social science research plays a crucial role in TB prevention and control. Due to the lengthy treatment regimen, the control of TB continues to be plagued by the persistent challenges associated with adherence to LTBI and TB medications. Acceptance of and adherence to lengthy treatment for the asymptomatic condition of LTBI further increase these challenges.

The 2000 Institute of Medicine report Ending Neglect: The Elimination of Tuberculosis in the United States called for additional research to understand the determinants of the behaviors of providers, patients, and systems and to improve methods for predicting and monitoring adherence to therapy (IOM, 2000). In addition, other issues relevant to effective TB control can be further addressed from a behavioral and social science perspective. These issues include, but are not limited to, identifying and treating LTBI and TB disease among persons in the United States, especially among African Americans in the Southeast and foreign-born persons; persons with TB/HIV co-infection; and persons with multidrug resistant TB (MDR-TB). Other issues include addressing stigma experienced by persons affected by TB; preventing the development of TB among persons at high risk; and addressing providers’ non-adherence to guidelines and recommendations.

Furthermore, TB control efforts are challenged by the disparities in communities affected by TB. Social and economic factors such as poverty, homelessness, substance use, availability of and accessibility to appropriate care and services, and TB knowledge, attitudes and beliefs, have a significant impact on the personal TB experience. Behavioral and social science research in TB has helped us better understand the behavior of TB patients and contacts, as well as that of providers. It can further help us address questions such as: What point in the course of illness do people seek health care? What issues influence the decision to seek care? What issues influence acceptance of recommended medications? What factors affect the decision and ability to continue and complete treatment? Changes in the epidemic, such as the emergence of multidrug-resistant strains and the increasing impact on foreign-born persons, highlight the need for a broader, multi-disciplinary approach to create innovative strategies to enhance future TB prevention and control efforts.

The persistent challenges of preventing and controlling TB present a clear example of a public health problem that requires a multidisciplinary approach – one that looks beyond the biomedical model of TB control. Incorporating multiple perspectives that include not only the traditional social sciences but also includes such disciplines as economics, epidemiology, and health policy analysis that strengthen the research design and outcomes. These disciplines use a wide range of research methods and theoretical models to understand, predict, and influence attitudinal, behavioral, and social processes that impact health outcomes. Multi-disciplinary research is critical for the development and implementation of effective TB prevention and control programs.

Behavioral and Social Science Activities for TB Prevention and Control in CDC’s Division of Tuberculosis Elimination (DTBE)

DTBE’s behavioral and social science research focuses largely on the major behavioral components influencing effective TB prevention and control -- issues including but not limited to treatment adherence, care-seeking behavior, patient-provider communication, perceptions of and ways to enhance the effectiveness of contact investigations, factors influencing acceptance of and adherence to LTBI treatment, and provider behaviors. Much of the research includes or targets pertinent high-risk populations, such as minorities, foreign-born, and disenfranchised populations.

In August 1994, CDC and the National Institutes of Health (NIH) co-sponsored a national workshop on tuberculosis behavioral research. The workshop was a response to the recommendation for behavioral and social science research on tuberculosis as stated in the “National Action Plan to Combat Multidrug-Resistant Tuberculosis” (MMWR 1992; 41 (No. RR-11): 1-48. This workshop brought together TB researchers, TB program staff, and interested stakeholders to establish an agenda for research on the primary behavioral, social, and health services aspects of tuberculosis treatment, prevention, and control. A total of 66 participants, including experts in tuberculosis, health education, and the social and behavioral sciences, as well as representatives of local and national governmental and international organizations, met in Bethesda, Maryland. The workshop was organized around five general and overlapping aspects of tuberculosis, including public knowledge of TB prevention and treatment; provider knowledge and practice; populations at high risk for TB; quality of TB control services; and patient adherence to treatment regimens.

Several years later, in 2000, the Institute of Medicine published Ending Neglect: The Elimination of Tuberculosis in the United States, a report that called for a behavioral science research agenda to help bring about the elimination of TB. Beginning in 2001, DTBE initiated a process to revitalize the tuberculosis research agenda, focusing on the behavioral and social sciences. The momentum generated by these events led to the December 2003 Tuberculosis Behavioral and Social Science Research Forum: Planting the Seeds for Future Research.

Extensive planning by an external steering committee, TB program staff, contractors, a CDC Planning Committee and other CDC colleagues culminated in the 2003 Behavioral and Social Science Research Forum, held in Atlanta, Georgia. The purpose of the Forum was to provide participants an opportunity to

  • Identify and prioritize TB behavioral and social science research gaps;
  • Develop a feasible, goal-oriented research agenda that will guide TB behavioral and social science activities;
  • Establish an ongoing partnership among national, state, and local governmental and non-governmental behavioral and social science researchers focusing on TB;
  • Create a mechanism for ongoing communication among TB behavioral and social science researchers.

Toward these goals, the Forum was designed to be a working and interactive meeting and was organized into various activities, including:

  • Presentations on CDC’s behavioral and social science research in TB control and elimination;
  • Considerations and perspectives on TB control and behavioral and social science applications from panels of research, programmatic, and community representatives; and
  • Facilitated breakout groups to identify behavioral and social science research gaps and needs and research questions

Recognizing that there is much work that still needs to be done before TB is eliminated, we hope this summary document of the Forum Proceedings will serve as a useful resource and provide the impetus for advancing efforts to control and eventually eliminate TB.

References

Centers for Disease Control and Prevention. Improving tuberculosis treatment and control: an agenda for behavioral, social, and health services research. Proceedings of Tuberculosis and Behavior: National Workshop on Research for the 21st Century, 1994; Aug 28-30; Bethesda (MD). Atlanta: CDC, 1995.

Galavotti, C, Saltzman, L, Sauter, S, Sumartojo, E. Behavioral and Social Science Activities Centers for Disease Control and Prevention: A Selected Overview of Exemplary Programs. American Psychologist. 1997, 52(2): 154-166.

Glanz, K, Lewis, FM, Rimer, BK, editors. Health Behavior and Health Education. San Francisco: Jossey-Bass, Inc, 1990.

Institute of Medicine (U.S.). Committee on the Elimination of Tuberculosis in the United States. Ending Neglect: The Elimination of Tuberculosis in the United States. Lawrence Geiter, editor; Committee on the Elimination of Tuberculosis in the United States, Division of Health Promotion and Disease Prevention, Institute of Medicine. Washington, DC: National Academy Press, 2000.

National Institutes of Health, Office of the Director, Funding and Training. A definition of behavioral and social science research for the National Institutes of Health [online]. 2001. Accessible at http://obssr.od.nih.gov/Content/About_OBSSR/BSSR_Definition/

Sallis, JF, Owen, N. Ecological models. In: Glanz, K, Lewis, FM, Rimer, BK, editors. Health Behavior and Health Education: Theory, Research, and Practice. San Francisco: Jossey-Bass, Inc, 1997: 403-424.

Schneiderman, N, Speers, M, Silva, J, Tomes, H, Gentry, J, editors. Integrating Behavioral and Social Sciences with Public Health. Washington, DC: American Psychological Association; 2001.

Snider, DE, Satcher, D. Behavioral and Social Sciences at the Centers for Disease Control and Prevention. American Psychologist. 1997, 52(2): 140-142.

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