The Tuberculosis Behavioral and Social Science Research Forum
Section I. Introduction and 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
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 (obssr.od.nih.gov/funding/definition.html).
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 (NCHSTP)
Within CDC’s National Center for HIV, STD and TB Prevention (NCHSTP),
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
- 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.
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