TM

Safer Healthier People

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Planting the Seeds for Future Research

 

The Tuberculosis Behavioral

and Social Science Research Forum

The Tuberculosis Behavioral

and Social Science Research Forum

Proceedings
Tuberculosis Behavioral and Social Science Research Forum: 

Planting the Seeds for Future Research 

Atlanta, GA 

December 10-11, 2003 

PROCEEDINGS 

Forum Proceedings prepared by the 

Communications, Education, and Behavioral Studies Branch 

Clinical and Health Systems Research Branch 

Division of Tuberculosis Elimination 

Centers for Disease Control and Prevention 

Public Health Applications and Research Area 

Abt Associates, Inc. 

Forum Proceedings distributed February 2005 

For more information about the CDC DTBE Forum, 

join the TB Behavioral and Social Science listserv at 

http://cdcnpin.org/scripts/tb_behavioral_science.asp
The views described in this document are those of the individual Forum participants 

and are not necessarily those of the Centers for Disease Control and Prevention, the 

Public Health Service, or any other part of the U.S. government. No official 

endorsement by any of the U.S. government agencies or organizations mentioned in 

this document is intended or should be inferred. 

Suggested Citation 

Centers for Disease Control and Prevention. Tuberculosis Behavioral and Social 

Science Research Forum: Planting the Seeds for Future Research. Proceedings of the 

Tuberculosis Behavioral and Social Science Research Forum; December 10–11, 

2003; Atlanta, GA: U.S. Department of Health and Human Services, CDC; 2005. 
Centers for Disease Control 

and Prevention (CDC) 

 Atlanta, GA 30333 

 March 1, 2005 

Dear Colleague: 

In December 2003, the Division of Tuberculosis Elimination (DTBE), National Center 

for HIV, STD and TB Prevention (NCHSTP), Centers for Disease Control and 

Prevention (CDC) convened The Tuberculosis Behavioral and Social Science Research 

Forum in Atlanta, Georgia. The theme was Planting the Seeds for Future Research. The 

goals of the Forum were to identify and prioritize TB behavioral and social science 

research gaps; to use that information to develop a feasible, goal-oriented research 

agenda that will guide TB behavioral and social science activities over a 5-year period; 

and to foster productive partnerships and ongoing communications between national, 

state, and local governmental and nongovernmental behavioral and social science 

researchers focusing on tuberculosis (TB). 

The Forum brought together over 60 academicians, researchers, TB controllers and 

program staff, and CDC representatives. The expectation was that their varied 

perspectives would contribute to the development of a research agenda addressing high 

priority behavioral and social aspects of TB prevention and control. 

The Forum was convened to address the need for further TB behavioral and social 

science research, as called for in the Institute of Medicine’s 2000 report Ending Neglect: 

The Elimination of Tuberculosis in the United States. The Forum builds on the precedent 

of a 1994 workshop sponsored by CDC, the National Institutes of Health, and the Health 

Resources and Services Administration, Tuberculosis and Behavior: National Workshop 

on Research for the 21st Century. 

Behavioral and social science research has the potential to make a tremendous impact on 

efforts to prevent and control the spread of TB. This research is needed to understand the 

behaviors of both patients and providers, and the impact of their actions on TB-related 

care seeking, diagnosis, treatment success, and prevention. In addition, health care 

service delivery and systems research are needed to address the structure and 

organization of health systems as well as the environmental, economic, and sociopolitical 

issues and laws that impact the delivery of TB services. 

Progress has been made at CDC in incorporating behavioral and social science 

perspectives into TB prevention and control; however, there is still much work to be done 

in this area. At CDC and elsewhere, behavioral and social scientists are currently 

engaged in research addressing a broad range of relevant sociocultural, behavioral, and 

structural issues. Further research should be conducted in a systematic manner, based on 

sound theories and using rigorous methodologies. 
Page 2 – TBBS Forum 

DTBE is pleased to share with you the proceedings from the Forum. We hope that you 

will find the information of interest as you plan future behavioral and social science 

research and programmatic activities in your work addressing TB prevention and control. 

If you have any specific questions or comments regarding the Forum or the Forum 

Proceedings, please join the TB Behavioral Science listserv at the following address: 

http://cdcnpin.org/scripts/tb_behavioral_science.asp. 

Sincerely, 

Kenneth G. Castro, M.D. 

Assistant Surgeon General, USPHS 

Director 

Division of Tuberculosis Elimination 

National Center for HIV, STD, and TB Prevention 

Centers for Disease Control and Prevention 
Table of Contents 

Executive Summary........................................................................................................... i 

Section I. Introduction and Background............................................................ 1 

Introduction....................................................................................................................1 

Background ....................................................................................................................2 

Section II. Presentations and Panel Discussions.............................................. 7 

Welcome Address: Opening Remarks

Harold Jaffe, M.D. .......................................................................................................7 

Welcome Address: Behavioral and Social Science Research in Tuberculosis 

Control

Kenneth Castro, M.D. ..................................................................................................8 

Welcome Address: Behavioral and Social Sciences in Tuberculosis Elimination

Wanda Walton, Ph.D. ..................................................................................................9 

Keynote Session: When Sacred Cows Become the Tiger’s Breakfast: Defining 

A Role for the Social Sciences in Tuberculosis Control

Jessica Ogden, Ph.D...................................................................................................10 

Keynote Session: Behavior, Society and Tuberculosis Control

Masae Kawamura, M.D. ............................................................................................11 

Preliminary Results from the Tuberculosis Behavioral and Social Science 

Literature Review

Cathy Rawls, M.P.H., C.H.E.S., Cristina Booker, M.P.H. ........................................12 

Neighborhood Health Messengers: Using Local Knowledge, Trust, and 

Relationships to Create Culturally Effective Tuberculosis Education and Care 

for Immigrant and Refugee Families

Stefan Goldberg, M.D................................................................................................13 

Psychosocial, Social Structural, and Environmental Determinants of 

Tuberculosis Control

Donald E. Morisky, Sc.D., M.S.P.H., Sc.M. .............................................................15 
Community Perspectives in Tuberculosis Control and Elimination: The 

Personal Experiences of Patients and Providers Panel Discussion

Robin Shrestha-Kuwahara, M.P.H., 

Representatives from DeKalb County and Fulton County Public Health 

Departments ...............................................................................................................16 

Group Discussion of Themes and Issues from Day One

Mark Nichter, Ph.D., M.P.H. .....................................................................................18 

Breakout Group Sessions I: Identifying Research Gaps and Needs.......................20 

Turning Research into Practice Panel Discussion

Jane Mezoff, DrPH ....................................................................................................20 

Sharpening the Focus on Turning Research into Practice: The Promise of 

Participatory Research Approaches

Shawna Mercer, M.Sc., Ph.D. ....................................................................................20 

Two CDC Models from HIV Prevention: Replicating Effective Programs and 

Diffusion of Effective Behavioral Interventions

Agatha Eke, Ph.D.......................................................................................................21 

Effective Intervention for Asthma

Leslie Boss, M.P.H., Ph.D. ........................................................................................23 

Potential Funding Opportunities

Kathryn O’Toole, M.B.A...........................................................................................23 

Closing Remarks: Maintaining the Momentum on Development of a 

Tuberculosis Research Agenda

Nick DeLuca, M.A.....................................................................................................24 

Section III. Results of Breakout Groups Sessions......................................... 25

Identification of Tuberculosis Behavioral and Social Science Research Gaps 

and Needs......................................................................................................................25 

Outline of Major TB Behavioral and Social Science Research Topics and 

Subtopics Identified at the Forum..............................................................................28 

Descriptions of Major TB Behavioral and Social Science Research Topics and 

Subtopics Identified at the Forum..............................................................................31 
Section IV. Appendices.......................................................................................... 44

Appendix A: Forum Agenda..................................................................................44

Appendix B: Presentation Slides...........................................................................47

Appendix C: TB Behavioral and Social Science Research Gaps and Needs: 

Major Research Topics, Subtopics, and Research Questions..................................91

Appendix D: Participant List...............................................................................121

Appendix E: References.......................................................................................128
i 

Executive Summary 

In December 2003, the U.S. Centers for Disease Control and Prevention (CDC), Division of 

Tuberculosis Elimination (DTBE) convened the TB Behavioral and Social Science Research 

Forum: Planting the Seeds for Future Research. The Forum’s overarching goal was to identify 

and prioritize TB behavioral and social science research needs, which will be used to develop a 

research agenda for TB prevention, control, and treatment. These Forum Proceedings include 

summaries of presentations and discussions, as well as a synthesis of research needs and 

priorities identified by attendees. 

Forum presentations addressed behavioral and social science research in TB, including CDC’s 

current research activities in these disciplines. Dr. Jessica Ogden and Dr. Masae Kawamura 

delivered keynote addresses on the role of behavioral and social sciences in TB control, and how 

research can improve TB treatment and control programs. Other speakers presented specific 

research findings addressing cultural, social, and environmental influences on TB education and 

patient adherence to treatment. A panel of patients and providers described their firsthand 

experiences with local TB programs. In addition, a panel of scientists described strategies to 

disseminate and translate research findings into practice. 

The Forum included breakout sessions for participants to identify needs and priorities for TB 

behavioral and social science research. Section III of the Forum Proceedings is a compilation of 

the results of the breakout sessions. The identified topics, subtopics, methodologies, and 

research questions have been organized using five broad levels of influence based on a socioecological framework. The five broad levels, along with a few examples, are listed below: 

• Intrapersonal: patients’ knowledge, attitudes, and perceptions (KAP); health-seeking 

behaviors; acceptance of and adherence to treatment; patient satisfaction; social stigma; and 

providers’ KAP, training, and practices 

• Interpersonal: communication between patients and providers; family and peer influences 

• Health systems and organizations: organizational structure (including collaboration 

between provider communities and systems; impact of sharing patient information); service 

delivery; contact investigations; health communications; and special challenges of high risk 

settings and populations 

• Community: impact of TB services on communities and patients 

• Public policy: government commitment and funding; health insurance and immigration 

policies 

Forum participants’ presentations and discussions reaffirmed the ongoing need for behavioral 

and social science research to improve TB prevention and control. It is CDC’s hope that the 

Forum Proceedings will be widely used to plan future behavioral and social science research and 

programmatic activities to enhance TB prevention and control. 
ii 

The Forum Proceedings document is divided into four main sections: 

Section I: Introduction and Background 

• Introduction 

• Background information on TB behavioral and social science research 

Section II: Presentations and Panel Discussions 

• Summaries of Forum presentations and panel discussions 

Section III: Results of Breakout Group Sessions 

• Identification of TB behavioral and social science research gaps and needs 

• Outline and descriptions of major TB behavioral and social science research topics and 

subtopics identified at the Forum 

Section IV: Appendices 

• Forum agenda 

• Presentation slides 

• List of major TB behavioral and social science research topics, subtopics, and questions 

• Participant list 

• References 
1 

Section I. Introduction and Background 

Introduction 

These proceedings summarize the presentations and discussions that took place during The 

Tuberculosis Behavioral and Social Sciences Research Forum: Planting the Seeds for Future 

Research, which was held in Atlanta, Georgia, on December 10-11, 2003. This meeting was 

built on the foundation of a previous workshop, Tuberculosis and Behavior: National Workshop 

on Research for the 21st Century, held in Bethesda, Maryland in 1994. Plans for holding a 

second workshop emerged largely in response to renewed calls for further TB behavioral science 

research. Specifically, the Institute of Medicine’s (IOM) 2000 report Ending Neglect: The 

Elimination of Tuberculosis in the United States identified the need for further behavioral and 

social science research in TB control and treatment. The IOM report included the following: 

“Recommendation 5.3. To promote better understanding of patient and provider nonadherence 

with tuberculosis recommendations and guidelines, a plan for a behavioral and social science 

research agenda should be developed and implemented” (IOM 2000 report, page 123). The 

Forum provided an excellent and timely opportunity to revisit the behavioral science issues 

raised during the 1994 workshop. 

The goals of the Forum were 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 nongovernmental behavioral and social science researchers focusing on TB; and 

• Create a mechanism for ongoing communication among TB behavioral and social science 

researchers. 

The Forum was designed to be an interactive “working meeting” and included presentations, 

panel discussions, and breakout sessions. The Forum brought together an interdisciplinary group 

of over 60 individuals involved or interested in TB behavioral and social science research, 

including academicians, researchers, contractors, TB program staff and patients, and staff from 

the National Center for HIV, STD, and TB Prevention, including many from the Division of 

Tuberculosis Elimination. 

We hope that this document will be useful in several ways. It may be cited as a statement of the 

need for interdisciplinary research that includes the perspectives of the behavioral and social 

sciences. It may also inspire researchers to conduct studies to address the identified research 

gaps and needs, leading to improvements in TB treatment and control. It is also hoped that it 

will serve as a foundation for the development of a TB research agenda for the behavioral and 

social sciences. Finally, it will also serve as an important document confirming the important 

role that behavioral and social sciences play in TB prevention and control and reminding 

researchers and program staff alike that, although we are making progress toward the elimination 

of tuberculosis, we still have much to learn and improve upon before we arrive at that goal. 
2 

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/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). 
3 

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. 
4 

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 multidrugresistant 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. 
5 

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 nongovernmental 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. 
6 

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/funding/definition.html

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. 
7 

Section II. Presentations and Panel Discussions 

The following section, which summarizes the Forum presentations and panel discussions, is 

organized according to the order of events at the Forum. For the reader’s reference, a copy of the 

Forum agenda and presentation slides are included in Appendices A and B, respectively. The 

Forum began with opening remarks and presentations highlighting the role of behavioral and 

social science research in TB control and elimination. Following these presentations, a diverse 

group of researchers, scientists, community providers, staff of TB control programs, and patients 

shared their unique perspectives on TB control and behavioral and social science research in TB. 

DAY ONE

WELCOME ADDRESS: OPENING REMARKS 

Harold Jaffe, M.D. 

Director, National Center for HIV, STD, and Tuberculosis Prevention, Centers for Disease 

Control and Prevention 

Day 1, Morning Session 

Dr. Jaffe’s opening remarks highlighted behavioral and social science research contributions to 

understanding the behavior of patients and providers in several health fields and their relevance 

to TB control and prevention. Early social science research has contributed to our understanding 

that cultural differences, race, gender, and ethnicity are as important as individual-level 

differences in predicting the success of health and disease prevention efforts. Behavioral 

sciences have been critical to U.S. and international activities addressing HIV/AIDS, STDs, and 

TB. For HIV/AIDS, behavioral sciences have enhanced our understanding of attitudes, healthseeking behaviors, treatment adherence, and prevention strategies. This research makes clear 

that “one size does not fit all” when developing prevention programs, a point that is also 

applicable to TB treatment and control strategies. 

More recently, the Institute of Medicine report Ending Neglect: Eliminating Tuberculosis in the 

United States called for studies to understand how interventions can be tailored to particular 

high-risk populations. Clearly, there is an expanding role for behavioral and social science 

research in informing the fight against tuberculosis. This Forum marks the continuation and 

refinement of efforts to set an agenda for TB control and prevention research in these disciplines. 

************************************************************************ 
8 

WELCOME ADDRESS: BEHAVIORAL AND SOCIAL SCIENCE RESEARCH IN TUBERCULOSIS 

CONTROL 

Kenneth Castro, M.D. 

Director, Division of Tuberculosis Elimination, Centers for Disease Control and Prevention 

Day 1, Morning Session 

Dr. Castro’s presentation on the role of behavioral and social scientists in TB control set the 

framework for the discussions that would guide the Forum. Drawing from research efforts in TB 

control that preceded the Forum, he specifically cited recommendations from the 1994 CDC/NIH 

national workshop to set a research agenda on Improving Tuberculosis Treatment and Control, 

and also cited the call for behavioral science research from the 2000 Institute of Medicine (IOM) 

report Ending Neglect: Eliminating Tuberculosis in the United States. 

These efforts have helped shape the role of, and need for, behavioral and social science research 

in TB control. Dr. Castro outlined the TB research needed in these disciplines: 

• Individual and interpersonal health behavior research is needed to address patient behaviors 

related to care seeking and adherence, provider behavior, and health care service delivery. 

• Systems research is needed to address the structure and organization of health systems; 

environmental, economic, and sociopolitical dynamics; and policies and laws. 

Behavioral and social scientists are conducting research to identify, understand, and address a 

broad range of relevant sociocultural, behavioral, and structural issues. They are also conducting 

systematic, theory-based multidisciplinary research based on scientifically rigorous experimental 

and quasi-experimental designs. 

Although the ultimate purpose of the forthcoming TB behavioral and social science research 

agenda is to guide CDC research in these areas, Dr. Castro said he hoped that the research 

agenda would also be used to inform ongoing development and refinement of TB control 

strategies and policies for sister agencies, task forces, and academic institutions. 

************************************************************************ 
9 

WELCOME ADDRESS: BEHAVIORAL AND SOCIAL SCIENCES IN TUBERCULOSIS ELIMINATION 

Wanda Walton, Ph.D. 

Chief, Communications, Education, and Behavioral Studies Branch, Division of 

Tuberculosis Elimination, Centers for Disease Control and Prevention 

Day 1, Morning Session 

Dr. Walton described the expanding role for behavioral scientists within the CDC’s Division of 

Tuberculosis Elimination (DTBE) and highlighted current behavioral and social science projects 

involving providers and patients. Current provider-focused studies include research to identify 

barriers to the acceptance and implementation of the 2000 guidelines for targeted testing and 

treatment for latent TB infection (LTBI) among private providers, and development of strategies 

to overcome such barriers. A second study aims to identify factors that facilitate or hinder health 

care workers’ adherence to local protocols for administration of annual worksite tuberculosis 

skin tests (TST) and treatment of LTBI. 

Current patient-focused studies include: 

• An ethnographic study seeking to understand the culturally-mediated perceptions, attitudes, 

and experiences regarding TB among five foreign-born populations in the United States; 

• Research to develop culturally and linguistically appropriate patient education materials on 

TB; 

• An assessment of the usefulness of social network techniques to increase the identification of 

female contacts during contact investigations; and 

• Research to assess the knowledge, attitudes, and culture-specific beliefs about LTBI among 

several high-risk groups. 

Three studies recently initiated through the TB Epidemiological Studies Consortium include: 

• Task Order 11: Addressing TB Disease among African Americans in the Southeast; 

• Task Order 12: Assessing TB Knowledge, Attitudes, Beliefs, and Practices Among Private 

Providers Serving Foreign-born Populations; and 

• Task Order 14: Developing Culturally Appropriate Educational Materials for Hispanic 

Service Organizations. 

Dr. Walton added that the research Forum is part of this expanding behavioral and social science 

capacity within the Division, and marks the beginning of the next 5-year cycle of DTBE’s 

activities in these disciplines. 

*********************************************************************** 
10 

KEYNOTE SESSION: WHEN SACRED COWS BECOME THE TIGER’S BREAKFAST: DEFINING A

ROLE FOR THE SOCIAL SCIENCES IN TUBERCULOSIS CONTROL 

Jessica Ogden, Ph.D. 

Technical Specialist, International Center for Research on Women 

Day 1, Morning Session 

Dr. Ogden presented a critical perspective on public health and TB control paradigms. Her 

presentation described a multidisciplinary approach to TB control that combines the strengths of 

the medical sciences with those of the behavioral and social sciences. Her proposed approach 

was informed by lessons learned from directly observed therapy short-course (DOTS) programs 

for TB treatment in India. 

Dr. Ogden proposed a shift away from some of the “sacred cows” of classical public health 

thinking that emphasize disease control and elimination toward a social science paradigm 

focusing on the interactions among disease control personnel, individual patients, and the 

cultural and social contexts in which they live. At the level of the patient, such a paradigm 

emphasizes care, with particular attention to developing trust and fostering patient-provider 

partnerships. Outcomes in TB treatment and control are also strongly influenced by social and 

cultural contexts, including social structures within households, communities, and the policymaking environment. For example, social and cultural influences may determine who can adopt 

the sick role (and when), the range of treatment options available, and the extent to which a 

person can access and adhere to treatment. 

A multidisciplinary, multilevel approach that takes into account the respective influences and 

roles of patients, communities, and households, as well as programs, providers, and policies can 

help to answer the following questions related to TB: 

• Why don’t patients come for treatment? 

• Why do they only come when it’s too late? 

• Why don’t they complete their therapy? 

• How can we make our programs accessible and acceptable? 

• How can we meet the health needs of the community? 

• How can we involve communities as participants in their own health? 

Answering such questions in ways that address the multiple levels of influence is a critical step 

in improving TB control programs and the outcomes that they are able to achieve. 

*********************************************************************** 
11 

KEYNOTE SESSION: BEHAVIOR, SOCIETY AND TUBERCULOSIS CONTROL 

Masae Kawamura, M.D. 

Chairperson, Advisory Council for the Elimination of Tuberculosis; Director, Tuberculosis 

Control Section San Francisco Department of Public Health Tuberculosis Clinic, Ward 94 

San Francisco General Hospital 

Day 1, Morning Session 

Dr. Kawamura noted the accomplishments of TB control efforts and offered pathways to further 

improving TB control programs. In particular, she identified several ways in which behavioral 

and social sciences can be applied to TB control, including: 

• Validating what we are doing right and wrong; 

• Introducing new behavioral strategies that have been proven in other fields; 

• Refining currently successful behavioral strategies, such as DOT, to improve implementation 

and outcomes; 

• Determining when strategies are appropriate or harmful; and 

• Framing TB data in their full context with demographics, social determinants, health 

disparities, and incidence of other diseases so the data are useful for advocacy and policy 

making. 

She also offered the following considerations to guide TB research and programs. 

• Research interventions must be practical and well planned. 

• If new resources will be needed to implement interventions, then the costs, savings, and 

benefits of such interventions should be documented. 

• When choosing staff, remember that civil service front-line staff may prove to be different 

from dedicated research staff. 

Dr. Kawamura identified specific populations and LTBI issues that still need to be addressed. 

Strategies are needed to engage minority and foreign-born communities, especially 

undocumented persons and new immigrants living on both sides of the U.S.-Mexico border. 

More work is needed to engage these patients and improve contact investigation methods and 

LTBI adherence strategies among them. Additionally, health promotion and prevention for 

LTBI could be improved by integrating targeted testing and LTBI treatment into primary care. 

Nontraditional approaches that go beyond education and incentives and enablers are needed to 

increase LTBI treatment adherence. Finally, the root causes of TB must be addressed. 

Communities and countries must mobilize to take action, and TB-related information must be 

provided in useful formats. 

Dr. Kawamura recommended a “macro” approach to enhance TB control efforts while 

acknowledging the individual-level strategies that have contributed to previous TB control 

successes. During the discussion with Forum participants, she emphasized that the time has 

come to insist on ways to improve TB interventions. She concluded by reminding participants 

that patients’ perspectives are greatly needed to inform programs.

************************************************************************ 
12 

PRELIMINARY RESULTS FROM THE TUBERCULOSIS BEHAVIORAL AND SOCIAL SCIENCE 

LITERATURE REVIEW

Cathy Rawls, M.P.H., C.H.E.S. 

Association of Schools of Public Health Fellow, Communications, Education, and 

Behavioral Studies Branch, Division of TB Elimination, Centers for Disease Control and 

Prevention 

Cristina Booker, M.P.H. 

Analyst, Public Health Applications and Research Area, Abt Associates, Inc. 

Day 1, Morning Session 

One element of DTBE’s development of a research agenda includes a comprehensive review of 

TB behavioral and social science literature. Ms. Rawls and Ms. Booker presented preliminary 

results from the literature review, which was still in progress at the time of the Forum. 

DTBE staff conducted a search in OVID across five databases (CINAHL, Embase, Medline, 

PsycInfo and Sociofile). This search identified literature that addresses behavioral, sociological, 

and cultural factors affecting TB prevention and treatment among affected populations and 

health care providers. General inclusion criteria used in this process were as follows: 

• TB research that used social science methods or applied social science theory or concepts; 

• Published works (including scientific, peer-reviewed literature, review articles, book 

chapters, and meta-analyses); 

• Literature published after 1980; and 

• Literature published in the English language that presents data or information for the United 

States or other countries. 

A team of DTBE staff and contractors from Abt Associates reviewed and abstracted 175 articles 

that were identified for inclusion. To ensure consistency, the team created data abstraction tools 

for obtaining relevant information from the literature. Multiple reviewers conducted joint article 

reviews to ensure inter-rater reliability. Key items abstracted from the literature included study 

descriptions such as study design, objectives, theoretical basis, sampling design, data collection 

methods, target population, geographic location, structural setting, and quantitative and 

qualitative analysis; key findings; limitations; conclusions; and recommendations. 
13 

Ms. Rawls and Ms. Booker presented preliminary analysis on article types (e.g., research, 

evaluation, or non-research); broad issues addressed in the literature (e.g., patient adherence; 

provider adherence; cultural and social domains, including knowledge, attitudes, and beliefs; 

health-seeking behaviors; structural influences; and other domains); and geographic areas and 

populations covered. They also identified overarching themes that emerged from authors’ 

conclusions and recommendations, including the following areas to be addressed by future TB 

research or practice: 

• Underlying social or cultural factors associated with TB, such as poverty and patients’ health 

beliefs; 

• Health care-seeking behavior, such as health care-seeking delays related to stigma and length 

of treatment; 

• Patient-related adherence issues, such as patient-identified barriers and facilitators to 

adherence; 

• Provider-related adherence issues, such as diagnosis and treatment delays; 

• Health education strategies, such as culturally appropriate interventions to increase accurate 

TB knowledge and reduce TB-related prejudices; 

• TB control and eradication strategies, including novel and coordinated approaches that 

involve other health services and diverse types of providers; and 

• Resource and funding allocations, including increased resources for interdisciplinary research 

and continued support for public health TB programs. 

Continued activities for the TB behavioral and social science literature review will include a 

review of 100 additional articles and a database consisting of all the article reviews. 

************************************************************************ 

NEIGHBORHOOD HEALTH MESSENGERS: USING LOCAL KNOWLEDGE, TRUST, AND 

RELATIONSHIPS TO CREATE CULTURALLY EFFECTIVE TUBERCULOSIS EDUCATION AND CARE 

FOR IMMIGRANT AND REFUGEE FAMILIES 

Stefan Goldberg, M.D. 

(on behalf of Patrick Chaulk, M.D., M.P.H.), Medical Officer, Clinical and Health Systems 

Research Branch, Division of Tuberculosis Elimination, Centers for Disease Control and 

Prevention 

Day 1, Morning Session 

Dr. Goldberg described a research project that utilized neighborhood health messengers, or 

“cultural case managers,” within a bilingual, bicultural TB control and prevention program, 

using local knowledge to create trust and relationships among immigrants and refugees. He 

provided details on two different cultural case management LTBI treatment programs: one in 

Seattle, WA, for new refugees and immigrants, and one in Boston, MA, for the Haitian 

community. 
14 

Based on experience in the Seattle project, the following factors emerged as attributes of 

effective cultural case managers: 

• Having sufficient knowledge of the languages of target populations to formulate 

understandable and credible messages; 

• Having experience with establishing effective and mutually trusting relationships with the 

target community; 

• Being highly regarded in the target community, and therefore able to be trusted messengers 

in the community; and 

• Being able to educate target communities about public health strategies and the complex 

health care system. 

The Seattle program achieved a therapy acceptance rate of 88% and a therapy completion rate of 

82%. Interviews suggested that the success of this program was largely due to the outreach 

workers’ ability to build trusting relationships with their clients. 

The Haitian Collaborative Project in Boston conducted community mapping activities as part of 

its cultural case management project. Dr. Goldberg offered the following selected cultural 

findings for this project: 

• TB can be more stigmatizing than AIDS. 

• There is no framework for understanding “latent TB infection.” Offering treatment in the 

absence of patient symptoms may be seen as experimentation. 

• Pharmaceuticals are often considered dangerous. 

• There is widespread mistrust of American physicians. 

• Health beliefs are often complex and may involve secular or spiritual components. 

• Some words and phrases such as “negative” and “positive” test results may be difficult to 

translate or have unintended or unclear meanings. 

• Perception that a positive reaction to the tuberculin skin test is common. In some 

populations, this is perceived as “normal” or a result of childhood vaccination with BCG. 

************************************************************************ 
15 

PSYCHOSOCIAL, SOCIAL STRUCTURAL, AND ENVIRONMENTAL DETERMINANTS OF 

TUBERCULOSIS CONTROL

Donald E. Morisky, Sc.D., M.S.P.H., Sc.M. 

Professor, School of Public Health Department of Community Health Sciences, University 

of California, Los Angeles 

Day 1, Morning Session 

Dr. Morisky presented research results from two randomized studies of adherence to anti-TB 

regimens. The first study used cognitive and behavioral outcome markers, such as knowledge, 

beliefs, values, and attitudes, to assess the effectiveness of an educational intervention. 

Participants were randomized to one of three intervention groups: 1) educational counseling, 

2) incentives/rewards, 3) a combination of educational counseling and incentives/rewards, or to 

the control group. Those who participated in the educational counseling intervention showed a 

significantly higher level of medication compliance from baseline to exit interview. Dr. Morisky 

identified factors that may affect drop-out rates, such as ethnic background, gender, 

unemployment, homelessness, drug use, HIV status, primary language, and marital status. 

The second study focused on foreign-born adolescents’ adherence to LTBI treatment. 

Determinants of these adolescents’ compliance with and completion of treatment were 

categorized as individual, environment, or other. 

Individual determinants of compliance included: 

• An understanding of the medical regimen; 

• Belief in the benefits of treatment; 

• Positive attitudes regarding treatment; and 

• High levels of self-esteem and self-efficacy. 

Environmental determinants of compliance included: 

• Family member reinforcement in the home; 

• Good patient/provider communication; 

• Systematic approaches for patient monitoring, follow-up, and reinforcement; 

• Convenience of picking up medication from the clinic; and 

• Use of medication containers and cueing behaviors. 

Other determinants of completion of care included: 

• Regular appointment-keeping behavior; 

• High levels of adherence; 

• Use of community health workers; 

• Reinforcement of positive behaviors by health care staff; and 

• Use of peer counselors to clarify health concerns. 
16 

During the discussion with Forum participants, Dr. Morisky commented further on 

communication about non-adherence between patients and providers. Patients are often afraid of 

talking about non-adherence, and social desirability pressures further influence communication 

between patients and providers. To address this issue, families should be encouraged to provide 

positive reinforcement for patients who are adherent to their treatment regimens. 

*********************************************************************** 

COMMUNITY PERSPECTIVES IN TUBERCULOSIS CONTROL AND ELIMINATION: THE PERSONAL 

EXPERIENCES OF PATIENTS AND PROVIDERS PANEL DISCUSSION

Robin Shrestha-Kuwahara, M.P.H. 

Behavioral Scientist, Clinical and Health Systems Research Branch, Division of 

Tuberculosis Elimination, Centers for Disease Control and Prevention 

Representatives from DeKalb County and Fulton County Public Health Departments 

Day 1, Morning Session 

In this session, a panel of three TB patients and two TB outreach workers from local health 

departments in Georgia shared their personal experiences with and perspectives on TB treatment. 

The discussion was loosely structured to elicit the personal experiences that patients and 

outreach workers wished to highlight. Owing to this format, no slides or handouts were 

prepared. The following excerpts have been organized around the categories that emerged 

during the discussion. 

Patient experiences and perspectives 

Reactions to tuberculosis diagnosis 

The patient panelists described their reactions and those of their family members to their being 

diagnosed with TB. Some patients talked of being initially shunned by their families and being 

asked to leave their homes. These patients understood that their families’ responses were 

inappropriate and based on misinformation about TB transmission, but the rejection was 

nonetheless very painful to them. One patient brought up the denial that she initially felt upon 

being diagnosed with TB, but she emphasized how important her family’s support was and how 

they urged her to seek care. 

Views of treatment and directly observed therapy 

All of the patients reported believing that directly observed therapy (DOT) worked for them, 

although all three had some problems with it. Two of the patients experienced stigma owing to 

their TB illness, but didn’t use that specific term. At first, they felt that the outreach workers’ 

visits were intrusive and embarrassing. The patients also mentioned that the medications 

themselves tasted unpleasant and had some bad side effects. Overall, however, the patients felt 

that DOT helped them get through the treatment. 
17 

Supports and enablers for tuberculosis treatment 

The patients mentioned several other factors besides DOT that assisted them during their course 

of treatment: 

• Assistance with basic needs such as housing, food vouchers, and other financial help; 

• Positive, trusting relationships with providers; 

• Faith in oneself; 

• Spiritual grounding; and 

• Support of family and friends. 

Provider experiences and perspectives 

Two outreach workers who provide DOT to TB patients also participated in the panel. Overall, 

they emphasized that patients have complex lives and problems; they need support and 

understanding to maintain adherence to TB medications and otherwise lead healthy lives. Key 

qualities for successful TB workers include patience, love of people, and a devotion to public 

health. 

Challenges to tuberculosis care 

The outreach workers listed the following challenges in working with TB patients: 

• Lengthy regimens that patients may desert once they are feeling better; 

• Failure of some patients to make appointments or otherwise comply with treatment; 

• Some patients’ suspicion that their whereabouts will be divulged by TB workers to 

immigration or law enforcement authorities; and 

• Common co-morbid conditions such as mental illness and substance use. 

Key elements of effective tuberculosis care 

The outreach workers discussed the following key elements for addressing the above challenges 

and generally meeting the needs of TB patients: 

• Nonjudgmental support and empathy for patients; 

• Incentives for adherence, such as food vouchers and transportation; 

• Clearly stated expectations regarding the treatment; 

• Motivation for adherence, such as the threat of multi drug-resistant TB; and 

• DOT, without which many patients would fail to complete their TB treatment. 

************************************************************************ 
18 

GROUP DISCUSSION OF THEMES AND ISSUES FROM DAY ONE 

Mark Nichter, Ph.D., M.P.H. 

Professor, Department of Anthropology, University of Arizona 

Day 1, Afternoon Session 

Dr. Nichter led Forum participants in a group discussion of themes that emerged during the first 

day of the Forum. The following is a summary of the main themes and issues discussed. 

Patients’ needs 

The group recognized the importance both of addressing the needs of TB patients, as well as 

overcoming the barriers to meeting those needs. More research is needed to gather patients’ 

perspectives on the following topics: 

• The value patients place on their health; 

• The continuum of patient needs, including social needs and access to medications; 

• Patients’ negative opinions about TB treatment; 

• Patients’ mistrust of government agencies as a barrier to TB treatment; and 

• The tradeoff between long-term benefits of taking TB medications and possible short-term 

drawbacks, such as unpleasant side effects. 

Some underlying patient needs such as family support, housing, and financial assistance are well 

documented, but policy makers and funders must be convinced that addressing these needs may 

be critical to patient adherence to TB regimens. Families of TB patients can play either positive 

or negative roles in TB treatment. Supportive families may be especially important for 

adolescents and some ethnic groups. 

Standardized and tailored approaches to working with TB patients must be balanced. Adherence 

to standardized TB treatment protocols is extremely important, but tailored interventions that 

meet patients’ individual needs may be required to facilitate such adherence. 

Providers’ needs 

More research should focus on identifying and understanding the needs of TB providers in areas 

such as adherence to guidelines and reimbursement for insured services. Providers also need 

more education and training on dealing with patients’ emotional issues. 

Patient-provider relationship 

Building trust between patients and providers requires early and ongoing attention. If treated 

with respect and sensitivity, clients who may initially be considered challenging often develop 

good relationships with clinicians. If a provider has undue suspicions of a patient or has 

assumptions about patient non-adherence, these may present additional barriers to working with 

TB patients. 
19 

Directly observed therapy programs 

Participants discussed the strengths and limitations of DOT programs. Suggestions for 

improving these models included the following: 

• Comparison of home-based and clinic-based DOT models based on patients’ needs; 

• DOT programs designed to address issues of TB-related stigma in work and home 

environments; 

• Cost-effectiveness research comparing home- and clinic-based DOT models; 

• Research to identify the characteristics of subpopulations and patients for whom DOT is 

particularly effective; and 

• Research on the sustainability and educational and cultural appropriateness of different DOT 

approaches with diverse populations. 

Health care systems 

Standard TB treatment protocols are needed in health care settings. Additionally, TB control 

programs need capacity building to prepare for new developments and trends, such as the 

increasing diversity of populations affected by TB and the programs needed to reach varying 

patient groups. 

Additional challenges for health systems involve the image and reputation of health departments 

and many patients’ mistrust of systems and the medications they provide. In particular, there is a 

need for better understanding of gender differences in seeking health services. Other health care 

systems issues that were discussed include the interactions between public health and private 

providers, and also those between different health care programs and services, e.g., the 

interaction between TB programs and HIV programs. 

Policy makers 

Policy makers have extremely important roles to play in the development and support of TB 

programs. As they make decisions about programs, policy makers should be encouraged to 

address the following issues: 

• TB education needs among patients, providers, and communities at large; 

• Underlying socioeconomic and cultural factors contributing to TB and influencing responses 

to TB programs; 

• Health insurance needs and problems associated with various insurance plans; 

• Funding and other resources needed to support and sustain effective TB programs; and 

• Disparities in TB rates among different populations. 

************************************************************************ 
20 

BREAKOUT GROUP SESSIONS I: IDENTIFYING RESEARCH GAPS AND NEEDS

Day 1, Afternoon Session 

Breakout sessions were held to identify TB research gaps and needs. A summary of the results 

can be found in Section III: Results of Breakout Group Sessions: Identification of Tuberculosis 

Behavioral and Social Science Research Gaps and Needs 

*********************************************************************** 

DAY TWO

BREAKOUT GROUP SESSIONS II: DETERMINING AND PRIORITIZING RESEARCH 

QUESTIONS AND METHODS 

Day 2, Morning Session 

Breakout sessions were continued to prioritize research questions and methods identified on Day 

One. A summary of the results can be found in Section III: Results of Breakout Group Sessions: 

Identification of Tuberculosis Behavioral and Social Science Research Gaps and Needs. 

*********************************************************************** 

TURNING RESEARCH INTO PRACTICE PANEL DISCUSSION

Jane Mezoff, DrPH 

Behavioral Scientist, Communications, Education, and Behavioral Studies Branch, 

Division of Tuberculosis Elimination, Centers for Disease Control and Prevention 

Day 2, Afternoon Session 

CDC researchers from across the agency participated in a panel on the translation of research 

findings into practice. Recognizing the importance of disseminating and making practical use of 

research results “on the ground” as key components of an expanded research agenda, these 

presenters addressed the theoretical concerns and practical challenges associated with such an 

expansion. They offered several models from the HIV and asthma fields for using research 

findings to improve interventions and better serve communities. They also offered suggestions 

for tackling the “nuts and bolts” of disseminating and translating research findings to the field. 

SHARPENING THE FOCUS ON TURNING RESEARCH INTO PRACTICE: THE PROMISE OF 

PARTICIPATORY RESEARCH APPROACHES 

Shawna Mercer, M.Sc., Ph.D. 

Health Scientist, Public Health Practice Program Office, Office of the Director, Centers for 

Disease Control and Prevention 

Day 2, Afternoon Session 

Dr. Mercer outlined challenges in translating research into practice and offered participatory 

research as an approach to addressing these challenges. The challenges include the following: 

• There may be insufficient recognition of the complexities inherent in putting public health 

research into practice in diverse settings; 

• Research findings may not be internally or externally valid; and 

• Best practices may not be locally appropriate or affordable. 
21 

Participatory research is a flexible approach, rather than a set of specific methods, that may 

address these challenges by actively involving all stakeholders—practitioners, policy makers, 

and members of affected communities—in the research process from the beginning. 

Accordingly, it is more likely to keep communities involved and to produce locally relevant 

findings and implementation guidance. 

The Office of Science and Extramural Research’s Extramural Prevention Research Grant 

Program (EPRP) solicited proposals for participatory research to develop community-based 

prevention strategies. EPRP funding currently supports 26 three-year grants for a total of about 

$11.4 million. The funded projects address a wide range of health issues including preventing 

obesity, tobacco use, and injuries; supporting school health; reducing health disparities; and 

increasing access to health care. Among these, a project on diabetes among Appalachian 

Hispanics seeks to develop a model approach to addressing rural health problems. 

************************************************************************ 

TWO CDC MODELS FROM HIV PREVENTION: REPLICATING EFFECTIVE PROGRAMS AND 

DIFFUSION OF EFFECTIVE BEHAVIORAL INTERVENTIONS 

Agatha Eke, Ph.D. 

Behavioral Scientist, Behavioral Intervention Research Branch, Division of HIV/AIDS 

Prevention, Centers for Disease Control and Prevention 

Day 2, Afternoon Session 

Dr. Eke described two sequential CDC initiatives to translate research into practice: Replicating 

Effective Programs (REP) and Diffusion of Effective Behavioral Interventions (DEBI). REP is 

involved with translation and packaging of science-based HIV interventions, while DEBI 

supports the diffusion of the translated interventions into practice. Both models are generally 

applicable to interventions on other public health topics such as TB. 

The REP project is in line with the recommendations made in the Institute of Medicine HIV 

prevention report of September 2000 and CDC’s HIV Prevention Strategic Plan; both spoke to 

the need for development and use of effective, evidence-based HIV prevention interventions at 

all levels. REP sought to move HIV prevention beyond the endpoint of researchers publishing 

their results to a new paradigm in which researchers, practitioners, and communities are in active 

collaboration to translate research into improved prevention practice. Initiated in 1996, REP has 

thus far produced packages for seven HIV prevention interventions whose effectiveness has been 

documented through rigorous research methods. Four more intervention packages are currently 

in development. These intervention packages are then selected and implemented by local 

agencies. 

Some important lessons emerged from the implementation phase of the initial REP packages: 

• Importance of keeping the interventions as simple as possible, focusing on “core elements”; 

• Flexibility to allow adaptation to local contexts; 

• Need for maintaining detailed records and documentation of implementation; 

• Value of clear “how to” materials; 

• Importance of collaboration among researchers, practitioners, and communities; and 

• Value of technical assistance during implementation. 
22 

DEBI represents the next step along the continuum of CDC’s technology transfer and 

dissemination efforts in HIV prevention. It develops and coordinates a national strategy for 

diffusing science-based HIV interventions to state- and community-level programs. DEBI 

objectives for each intervention are accomplished in three phases that involve planning and 

development of curricula and related materials; implementation of an institute for master 

trainers; and larger scale roll-out in which up to 700 facilitators at state and local levels are 

trained and provided technical assistance and individualized coaching. Additional mechanisms 

for diffusing science-based interventions include satellite broadcasts, newsletters, Web-based 

discussion forums, and conference calls. 

The DEBI model represents a further important effort to bridge the gap that commonly exists 

between public health researchers and practitioners. In the funding process for this initiative, 

there were specific requirements and incentives for the collaborations among researchers who 

have developed and evaluated the interventions, the front-line practitioners who will be trained to 

replicate or adapt these interventions, and the communities in which they will be implemented. 

Lessons learned from DEBI include: 

• Active partnership and clear communication among all stakeholders are very important to a 

successful translation of research into practice; 

• Multiple disciplines and skills are needed for the process to succeed; 

• Implementing interventions with fidelity is important, but local adaptation may also be 

necessary to maximize effectiveness; 

• Differences between researchers’ and communities’ definitions of “effective” interventions 

must be harmonized; and 

• Successful diffusion may help to overcome myths about lack of capacity and inability to 

collaborate across sectors. 

A member of the audience noted that the TB field is far behind the HIV field in such translation 

of research into practice, and that this represents very important work in which there is much to 

learn from the HIV experience. 

*********************************************************************** 
23 

EFFECTIVE INTERVENTION FOR ASTHMA

Leslie Boss, M.P.H., Ph.D. 

Epidemiologist, Environmental Health Division, National Center for Environmental 

Health, Centers for Disease Control and Prevention 

Day 2, Afternoon Session 

Dr. Boss presented a model for continuously generating and refining interventions through 

ongoing translation of research findings. She gave some examples of translated interventions in 

the field of asthma control and treatment. For effective interventions to be widely adopted, they 

need to be widely known, evidence-based, appropriate to the target population and setting, well 

documented in accessible materials, and suitable for implementation by available staff, assuming 

access to proper training. Through implementation experience, gaps in interventions may be 

discovered that can then be addressed by further intervention research and translation of these 

research findings into additional interventions that fill these gaps. 

Dr. Boss then provided some examples of asthma interventions based on translation of research 

findings. These interventions target various age groups (e.g., pre-school age, elementary school 

age, teens, and adults) in different settings (e.g., health care, school, and home). Information 

about this ongoing research and translation of research findings into implementation practice 

may be disseminated by means of the Internet, searchable literature databases, conferences, and 

various types of publications. More information can be found at the following website: 

http://www.cdc.gov/nceh/airpollution/asthm a/interventions/interventions.htm 

************************************************************************ 

POTENTIAL FUNDING OPPORTUNITIES 

Kathryn O’Toole, M.B.A. 

Associate Director of Management and Operations, Division of Tuberculosis Elimination, 

Centers for Disease Control and Prevention 

Day 2, Afternoon Session 

Ms. O’Toole summarized CDC’s TB-related funding. In fiscal year (FY) 2003, DTBE allocated 

almost $140 million for domestic and international activities. The majority of this funding goes 

to support TB programs in state and big city health departments. About $2 million goes to 

support international activities. A certain portion of DTBE’s budget is set aside to fund research 

projects submitted by staff of CDC, TB Epidemiologic Studies Consortium (TBESC) 

researchers, and investigators from the TB Trials Consortium. Applicants first submit research 

concepts that are initially screened by the TBESC Research Chair and DTBE Associate Director 

for Science, then reviewed and scored by a special committee and DTBE senior staff. 

Investigators whose concepts receive high scores are asked to develop and submit full proposals 

for review by DTBE. 

Because of anticipated budgetary shortages in FY2004, no new projects will be funded through 

this process this year. Depending on the budget situation in FY2005, some new projects may be 

funded in that fiscal year. 

************************************************************************ 
24 

CLOSING REMARKS: MAINTAINING THE MOMENTUM ON DEVELOPMENT OF A TUBERCULOSIS 

RESEARCH AGENDA

Nick DeLuca, M.A. 

Team Leader, Education, Training, and Behavioral Studies Team, Communications, 

Education, and Behavioral Studies Branch, Division of Tuberculosis Elimination, Centers 

for Disease Control and Prevention 

Day 2, Afternoon Session 

Nick DeLuca, CDC DTBE’s Forum Team Co-Leader, delivered closing remarks. He 

acknowledged the Forum Steering Committee, local TB program staff, and CDC staff and 

contractors who helped plan and implement the Forum. Mr. DeLuca described the following 

next steps that CDC may take to maintain the momentum for developing the TB behavioral and 

social science research agenda: 

• Behavioral science listserv and e-mail communications to generate more input on TB 

research needs from Forum participants and interested persons who could not attend; 

• Database to store the literature reviews; and 

• Report of the TB behavioral and social science literature review, guided by the themes 

identified in breakout group discussions. 

Information gathered from Forum presentations, panel discussions, and breakout sessions 

reaffirmed the ongoing need for behavioral and social science research to inform improvements 

in the practice of TB prevention, control, and treatment. Solid research is needed to address 

important TB outcomes, such as patient adherence and provider practices, and social and cultural 

issues that influence all facets of the ongoing TB epidemic and responses to it. Several key 

points came out of this Forum: 

• TB patients, providers, and researchers offer diverse and important perspectives on the 

challenges and potential solutions to be addressed by future TB behavioral and social science 

research and TB treatment and control programs; 

• Multidisciplinary and multilevel approaches to improving TB control and treatment efforts 

should involve key stakeholders such as patients, providers, families, communities, health 

systems, and policy makers; and 

• Innovative research and tailored interventions are needed to improve existing TB treatment 

and control efforts and to overcome the social, cultural, environmental and structural 

challenges faced by patients, providers, communities, and TB programs. 

The perspectives compiled from Forum attendees and ongoing Forum-related activities will be 

essential components of the CDC DTBE’s forthcoming TB research agenda. The Forum 

Proceedings will be shared with stakeholders and interested parties. It is CDC’s hope that this 

document will be widely used by those working in TB prevention, control, and treatment. 

************************************************************************ 
25 

Section III. Results of Breakout Groups Sessions 

Identification of Tuberculosis Behavioral and Social Science Research 

Gaps and Needs 

Summary of Breakout Sessions at the Forum 

There were four small breakout groups consisting of approximately 12 participants that met once 

each day during the Forum. The objectives for the breakout sessions of the Forum were to 

1) identify areas that have been sufficiently researched, 2) to identify and prioritize research 

needs and gaps, 3) to articulate research questions for each gap area, and 4) to delineate research 

methods/approaches to fill the identified research needs. The breakout sessions included 

brainstorming and small group discussions. At the end of the small breakout sessions, all four 

groups reconvened to the larger group to report out and share the highlights from their 

discussions. 

Forum participants used the National Institutes of Health (NIH) definition of behavioral and 

social science research as the basis for group discussion. (Refer to the Background Section on 

p. 2 for a complete definition). 

To guide the discussions, the four groups were formed around two major themes or domains: 

“external” vs. “internal” influences. Though the framework is artificial, the purpose of these 

groupings was to initiate thinking from the perspective of factors influencing behaviors, such as 

health-seeking, initiating and adhering to treatment, and providing diagnostic, care, and 

treatment services with respect to provider behaviors, rather than focus on the behaviors 

themselves. This framework was intended to facilitate discussion about and development of 

research concepts that focus on interventions that directly address the influential factors, and 

narrow the already broad focus to either “external” or “internal” influences to the extent possible. 

Overlap was expected and inevitable, due to the multiple dimensions of influences on behaviors 

and the complex way that these influences interact with one another. Examples of these types of 

influences were provided during the breakout sessions and are noted below. 

1) “External” influences on health and health behaviors may include factors in the physical or 

‘external’ environment, organizational structures, policies, regulations, guidelines, poverty, 

racism, economic inequality, disparities in care, availability and access issues, legislation 

(e.g., immigration, public health laws). 

2) “Internal” influences on health behaviors may include individual and cultural beliefs, 

etiologies or explanations of causality, knowledge, attitudes, and perceptions. 

Influences such as stigma, social norms and customs could and did fall under both domains, 

depending on whether the discussion was on how these influences are internalized OR how they 

are expressed in society. 

The breakout sessions, each headed by a trained facilitator, were very interactive, consisting of 

independent brainstorming activities in which participants wrote down their ideas on notecards 

and flip charts and subsequently shared information with the breakout group for discussion. 

Each breakout session was followed by a sharing of that group’s ideas with the larger group of 

Forum participants for questions and discussion. 
26 

For the purpose of organizing the Forum Proceedings, the notes and flip charts were reviewed 

and synthesized using the five broad levels based on the Socio-Ecological Framework. The five 

broad levels identified are listed below: 

• Intrapersonal 

• Interpersonal 

• Health Systems and Organizations 

• Community 

• Public Policy 

Organization of the Breakout Sessions Findings 

The Socio-Ecological Framework was used to organize the information generated by the 

participants during the Forum breakout sessions because of its multi-layered structural 

components. According to Sallis and Owen (1997), the Socio-Ecological Framework focuses on 

multiple levels of influence and proposes that health and behavior are caused by multiple factors. 

It assumes that organisms cannot exist or act in isolation; instead they work as an interdependent 

network of relationships influenced by internal and external forces. More specifically, behaviors 

are influenced by intrapersonal (i.e., individual), social and cultural, and physical environment 

factors. These multiple factors and interaction among them are relevant for understanding and 

changing health behaviors of individuals, communities, and organizations as a whole. 

Using this framework, the most relevant levels of the model were identified and modified for the 

purposes of the Forum breakout sessions (Refer to Figure 1: The Socio-Ecological 

Framework). The levels that were used to systematically organize the information derived from 

the Forum breakout sessions are listed below. 

Intrapersonal: This level focuses on influences (e.g., knowledge, attitudes, and perceptions; 

patient satisfaction; and social stigma) that affect the individual behavior of patients, such as 

health seeking behaviors and adherence to treatment. This level also addresses individual-level 

issues that may affect providers’ behaviors, such as adherence to guidelines and 

recommendations. 

Interpersonal: This dyadic level focuses on the relationship between two individuals or units 

regarded as a pair. Examples of this level include the patient-provider relationship and its impact 

on both the patient and provider as well as influences of a family member, significant other, or 

peer on a patient. 

Health Systems and Organizations: This larger social system focuses on how individuals, 

small groups, and communities can be affected by structural, economic, and other organizational 

forces. Examples include the provision, accessibility, and use of health care services, and 

collaboration between provider communities and other systems. 

Community: This level focuses on influences that affect behavior on a small-group level (e.g., 

family and social networks) in addition to larger groups, such as those in community settings. 

Examples include the influences of family and social networks on individuals; the relationship 

between local health services and individuals and communities; social norms; and social stigma. 

Pubic Policy: This level focuses on the implications of public policy on the behaviors of 

individuals, groups, communities, and organizations, with special emphasis on issues relating to 
27 

government commitment, funding, health insurance, and immigration policies. 

Major research topics and subtopics were grouped to the extent possible under the five broad 

levels delineated in the Socio-Ecological Framework. More detailed information on specific 

topics identified by Forum participants are presented in the sections titled Outline of Major TB 

Behavioral and Social Science Research Topics and Subtopics Identified at the Forum on 

pgs. 28-30, and Descriptions of TB Behavioral and Social Science Research Topics and 

Subtopics Identified at the Forum on pgs. 31-43. 

Specific research questions generated by Forum participants can be found in Appendix C: 

Tuberculosis Behavioral and Social Science Research Gaps and Needs: Major Topics, 

Subtopics, and Research Questions. 

Figure 1: The Socio-Ecological Framework

Public Policy

Community

Intrapersonal

Interpersonal
28 

Outline of Major TB Behavioral and Social Science Research Topics and 

Subtopics Identified at the Forum 

I. Background 

A. Health disparities 

II. Intrapersonal 

A. Patients’ knowledge, attitudes, and perceptions 

B. Patients’ behaviors 

1. Health care-seeking behaviors 

 2. Adherence to treatment 

 C. Patient satisfaction 

 D. Social stigma 

E. Providers’ knowledge, attitudes, and perceptions 

F. Provider training and practices 

 1. Diverse training 

2. Cultural competency 

 3. Clinical practices 

III. Interpersonal 

 A. Communication between patients and providers 

 B. Family and peer influences 

IV. Health Systems and Organizations 

A. Organizational structure 

1. Collaborations between provider communities and systems 

 2. Impact of sharing patient information 

 B. Service delivery 

 1. Patient-centered approaches 

2. Case management 

 3. Advantages and disadvantages of directly observed therapy 

 4. Role of incentives and enablers 

 5. Contact investigations 

 6. Health communications 

7. Special challenges of high risk settings and populations 

 a. HIV/TB 

 b. Homelessness, unstable housing, and mental health issues 

c. High mobility jobs and migrant labor 

 d. Incarceration 

 e. Substance use 

 f. Foreign born 

 g. Pediatrics 
29 

V. Community 

 A. Impact of TB services on communities and patients 

 1. Influences of family and social networks 

 2. Social stigma 

VI. Public Policy 

 A. Government commitment and funding 

 B. Health insurance 

C. Immigration policies 
30 

Figure 2: Outline of Major TB Behavioral and Social Science Research Topics and Subtopics

Patients' knowledge, attitudes, and perceptions

Patients' behaviors

 Health care-seeking behaviors

 Adherence to treatment

Patient satisfaction 

Social stigma

Providers' knowledge, attitudes, and perceptions 

Provider training and practices 

 Diverse training

 Cultural competency

 Clinical practices

Communication between patients and providers

Family and peer influences

Organizational structure

 Collaborations between provider communities and systems 

 Impact of sharing patient information

Service delivery

 Patient-centered approaches

 Case management 

 Advantages and disadvantages of directly observed therapy

 Role of incentives and enablers

 Contact investigations

 Health communications

 Special challenges of high risk settings and populations

 - HIV/TB

 - Homelessness, unstable housing, and mental health 

 issues

 - High mobility jobs and migrant labor

 - Incarceration

 - Substance use

 - Foreign born

 - Pediatrics

Government commitment and funding 

Health insurance 

Immigration policies

Community 

Public Policy 

Intrapersonal

Interpersonal

 Impact of TB services on communities and patients

 Influences of family and social networks

 Social stigma

Health Systems and 

Organizations
31 

Descriptions of Major TB Behavioral and Social Science Research 

Topics and Subtopics Identified at the Forum 

The following section provides a range and scope of topics that were generated at the Forum. 

For each topic, a brief description is given, followed by an italicized paragraph(s) summarizing 

the general research concepts that were elicited by Forum participants. For the entire list of 

topics, associated research concepts, as well as specific research questions, refer to Appendix C. 

I. Background 

A. Health disparities 

Vast disparities exist in TB case rates, treatment outcomes, and TB mortality among many 

different population strata. Historically, these disparities have often been based on 

socioeconomic status and within racial and ethnic minorities, the incarcerated, substance 

abusers, and homeless populations--populations especially vulnerable to poorer TB 

outcomes. In 2002, TB case rates among non-Hispanic blacks continued to be eight times 

greater than non-Hispanic whites.1 In addition, the past decade has seen disparities emerge 

between U.S-born and foreign-born populations in the United States. Identifying and 

eliminating disparities in TB case rates, as well as determining effective measures to reduce 

existing disparities, are important steps toward controlling and eventually eliminating TB. 

During the breakout sessions, Forum participants identified the need to better understand 

and address disparities in TB case rates and treatment outcomes. 

II. Intrapersonal 

Intrapersonal influences on behavior such as knowledge, attitudes, and perceptions, 

patient satisfaction, and social stigma affect the individual behavior of patients 

including health seeking behaviors and adherence to treatment. This level also 

addresses individual-level issues that may affect providers’ behaviors, such as 

adherence to guidelines and recommendations. 

A. Patients’ knowledge, attitudes, and perceptions (KAP) 

An individual’s knowledge, attitudes, and perceptions with respect to health in general and 

with a specific illness, such as TB, influence his/her behavior. Specifically, these factors 

can influence health seeking, understanding of the diagnosis, understanding of treatment, 

treatment initiation, treatment adherence, and general interactions with health care 

providers. 

Forum participants identified the importance of further understanding patients’ knowledge, 

attitudes, and perceptions with respect to TB, with a particular focus on latent tuberculosis 

infection (LTBI). The need to identify any differences in these factors among different ethnic 

and cultural groups, specifically Latinos and other foreign-born populations, was 

emphasized. Finally, participants called for the further use of health behavior models and 

theories to be used as frameworks to better understand the factors that influence knowledge, 

attitudes, beliefs and practices of TB patients. 
32 

B. Patients’ behaviors 

1. Health care-seeking behaviors 

Health care-seeking behavior for TB includes the recognition of TB-related symptoms, 

presentation to health facilities and/or alternative medical resources (e.g., family and 

community healers), and adherence to effective treatment regimens and treatment 

monitoring. Individual factors, such as knowledge, attitudes, gender, sex, ethnicity, income, 

and education, in addition to health service barriers, including accessibility and acceptability 

of care, cost of services, and quality of care, can often delay or prevent a person from 

seeking TB care and treatment. 

Forum participants identified the need to further understand and influence the barriers and 

facilitating factors to seeking health care for LTBI and TB diagnosis, treatment monitoring, 

and completion of treatment for different populations. Specific questions were raised 

regarding the availability, accessibility, acceptability, and affordability of care. In addition, 

the group discussed the role of further understanding how an individual’s perceptions of the 

health care system and health care providers influence their health seeking behavior. 

2. Adherence to treatment 

Treatment regimens for LTBI and TB include providing the safest, most effective therapy in 

the shortest amount of time and ensuring adherence to prescribed regimens. The major 

determinant of a successful treatment outcome is patient adherence to the prescribed drug 

regimen. Nonadherence can lead to inadequate treatment which can result in relapse, 

continued transmission, and the development of drug resistance. 

Directly observed therapy (DOT) and self-administered therapy are two strategies 

commonly used in TB control. DOT, a major component of case management, is currently 

recommended for all patients with TB disease. In addition to DOT, research has shown the 

use of incentives and enablers can also enhance patient adherence. 

Directly observed treatment for LTBI is less common due to limited resources. Ensuring 

treatment completion of LTBI poses unique challenges as it is often self-administered. 

Forum participants identified the importance of further understanding the barriers and 

facilitators that affect the initiation, duration, and completion of treatment of LTBI and TB 

disease, specifically for different populations, such as foreign-born persons and 

incarcerated/newly-released prisoners. Discussion focused on ways to better understand 

and enhance DOT. In addition, a focus of the discussion centered on how to improve 

patient acceptance of LTBI treatment. The discussion also posed questions on how behavior 

change theories and models could be utilized to better understand and overcome barriers to 

treatment for LTBI and TB disease. 
33 

C. Patient satisfaction 

Patient satisfaction is how individuals regard the health care services or the manner in which 

they are delivered by health care providers as useful, effective, or beneficial. It is often 

based on patient expectations of care and the self-assessment of their experiences. Patient 

satisfaction may play a major role in a patient’s behaviors. If a patient is dissatisfied with 

the relationship with their provider or with the clinical setting, he or she is much less likely 

to be adherent to medications, keeping appointments, identifying contacts, and so forth. 

Research has shown that patient satisfaction can be increased with effective patient-provider 

communication and development of a trusting relationship. 

Forum participants identified the importance of the relationship between a patient and the 

provider or health care system that serves them and the need to better understand this 

relationship and the role it plays, especially from the perspective of different ethnic and 

cultural groups. Forum participants also expressed the importance of determining how 

patient satisfaction may be influenced by TB care and services. They also highlighted the 

need to explore the influence of patient satisfaction on behavior such as adherence. 

D. Social stigma 

Evidenced both in research and in practice, stigma associated with TB appears to be 

universal. The consequences of stigma can be seen affecting care-seeking behaviors, as 

persons have been known to hesitate or choose not to disclose their TB status to family, 

friends, and co-workers out of fear of being socially ostracized, in addition to losing their 

employment and/or temporary housing. Research has demonstrated that in some cases, 

personal rejection occurs as a result of the stigma surrounding TB. Stigma has also been 

shown to hinder adherence to treatment. By identifying the consequences of stigma, social 

science research has illustrated the need for effective intervention strategies to mitigate it. 

During breakout discussions, the research questions surrounding stigma highlighted the 

continuing need to identify the effects or consequences of stigma on care seeking, adherence 

to treatment, and cooperation with health care providers, especially during contact 

investigations, to determine whether certain populations or sub-populations (e.g., foreignborn communities) are adversely affected by stigma and in which settings (e.g., residential 

or workplace). Forum participants also raised the issue of better understanding different 

perspectives and sources of stigma. Additionally, discussions revolved around the need for 

identifying and testing effective ways to mitigate the influences that stigma has on 

individuals and communities. 

E. Providers’ knowledge, attitudes, and perceptions 

A health care provider’s knowledge, attitudes, and perceptions (KAP) about LTBI/TB play 

an important role in their ability to diagnose and treat individuals with TB. A variety of 

factors, such as medical and health-related training (e.g., U.S.-training vs. foreign training, 

generalist, or specialist), cultural and ethnic background, practice settings, preferred sources 

of information and learning styles can influence providers’ knowledge, attitudes and beliefs 

about LTBI and TB. 
34 

Forum participants identified the need to better understand the TB-related knowledge, 

attitudes, and perceptions of different providers in a variety of practice settings, including: 

private physicians, primary care physicians, civil surgeons, international medical graduates 

(IMG), and providers who serve foreign-born populations. Forum participants called for 

the further use of health behavior models and theories to be used as frameworks to better 

understand the factors that influence knowledge, attitudes, beliefs and practices of TB 

providers and how these factors influence their ability to diagnose and treat TB patients. 

F. Provider training and practices 

Providers serving individuals at risk for TB in the United States come from a wide range of 

backgrounds and perspectives. They may have differing knowledge, attitudes, and practices 

related to TB prevention and control based on factors such as, where they completed their 

medical training, residency, board certification requirements, and continuing education 

experiences. Personal and cultural factors may also affect their practices. All of these 

factors may influence the providers’ level of professional competence, cultural competency, 

and clinical behaviors, including their adherence to professional practice guidelines. 

1. Diverse training 

Providers have different levels of knowledge, attitudes and practices related to TB 

prevention and control, based on factors such as where they completed their medical 

training, residency, board certification requirements, and continuing education experiences. 

Moreover, many foreign-trained providers and international medical graduates (IMG) have 

an increasingly important role in TB prevention and control efforts, as they may be the first 

point of contact for foreign-born individuals with TB. 

Forum participants identified the need to assess the impact of working with providers of 

different cultural and professional backgrounds, who have undergone different types of 

training in the area of TB control. Participants also identified the need to improve 

collaborations between health department and non-health department providers. 

2. Cultural competency 

The role of cultural competency in U.S. TB programs has become increasingly important, 

especially over the past two decades as the proportion of persons with TB who are foreign 

born has rapidly increased and now surpasses U.S.-born cases. In addition, widening 

disparities have emerged among other U.S.-born groups, such as African Americans in the 

Southeast. Efforts to promote health and prevent and treat disease within culturally diverse 

groups will involve building the capacity of programs to become culturally competent. This 

is extremely important in health care, as it has generally been shown that minority groups 

use fewer services and are less satisfied in general with their care. Furthermore, patients 

may avoid care out of fear of being misunderstood or discriminated against. Providers need 

to be aware of and understand the impact that culture can have on a patient’s TB knowledge, 

attitudes, beliefs, and practices. By increasing the cultural competency of providers, they 

will be better equipped to provide the most appropriate TB care and treatment. 

Forum participants identified the need to further understand the role of cultural competency 

on the delivery of services to TB patients and ways to increase cultural competency among 

health care providers, including public health nurses and outreach workers. In particular, 

participants focused on how culturally competent health care workers can influence 

patient’s adherence to treatment for LTBI and TB. 
35 

3. Clinical Practices 

Clinical practices of providers can include TB screening and treatment, patient management, 

collaborating with the health department for contact investigations, and adherence to 

guidelines and recommendations. Just as patients are faced with individual or structural 

barriers to adhering to LTBI and TB treatment, health care providers also face numerous 

challenges and barriers to adherence to TB screening and treatment guidelines and 

recommendations. Providers must be aware of CDC and American Thoracic Society (ATS) 

guidelines in order to implement them. In addition, other barriers such as provider 

background and practice setting may influence their adherence to guidelines. Identification 

of barriers to the awareness of and adherence to guidelines and ways to address these 

barriers can improve provider practice and lead to the provision of more effective health 

care. 

Forum participants identified the need to determine ways to increase providers’ awareness 

and adherence to TB treatment guidelines for providers in different health care settings. In 

these discussions, “providers” include private providers, community health workers, case 

workers, non-health department physicians, and foreign-trained providers. 

III. Interpersonal 

Interpersonal influences on behavior focus on the relationship between two individuals 

or units regarded as a pair. Examples include the patient-provider relationship and its 

impact on both the patient and provider as well as influences of a family member, 

significant other, or peer on a patient.

A. Communication between patients and providers 

Communication between patients and providers is critical for effective health care. It is a 

fundamental element that helps to shape the patient-provider relationship and foster trust. 

Communication includes appropriate linguistic concordance, optimal use of interpreters 

when necessary, verbal and nonverbal expressions and cues, and good listening skills by 

providers. Communication also ultimately reflects the dynamics of the relationship between 

a provider and the patient. Provider-patient communication can impact trust, patient 

satisfaction, and treatment adherence. 

Forum participants identified the need for additional research to understand the role of 

provider-patient communication in effective TB case management. Participants discussed 

the need to foster positive interactions and to build trusting and caring relationships 

between patients and providers. 

B. Family and peer influences 

A TB patient’s family, peers, and social networks can be very influential on the patient’s 

behavior. Family and peer influences can affect an individual’s decision to seek treatment 

and to adhere to provider treatment recommendations. In addition, peer and social 

influences can impact a TB patient’s willingness to identify contacts during a contact 

investigation. 

Forum participants identified the need for research to further understand the family and 

peer in terms of whether and when a patient enters (and remains in) care. 
36 

IV. Health Systems and Organizations 

Influences of health systems and organizations on behavior focuses on how structural, 

economic, and other organizational forces can affect the views of individuals, small 

groups, and communities. Examples include the availability, accessibility, and use of 

health care services by individuals, and collaboration between and among provider 

communities and other systems. 

A. Organizational structure 

The way in which the health care system is organized may play a role in affecting both 

patient and provider behaviors. Whether the system has a vertical or horizontal structure, 

whether services are integrated with other health and social services or are part of a 

collaborative network, and how the health care system is impacted by other systems within a 

society may impact the availability, delivery, and acceptability of services. 

1. Collaborations between provider communities and systems 

There are many different social and behavioral determinants involved in TB transmission, 

identification, and treatment success. Certain factors that place individuals at high risk for 

TB, such as poverty, substance abuse, and homelessness, can be greatly impacted by the 

availability and quality of social services. Both private and public collaborations between 

and among existing social service agencies and TB control efforts, as well as timely and 

appropriate social service referrals for individuals with TB, may play an important role in 

the efforts to successfully eliminate TB. 

There are also a number of relevant collaborations between TB services and other healthrelated entities that may need to be better understood and cultivated. Given the high rate of 

TB/HIV co-infection among certain populations, collaboration between or integration of TB 

and HIV services may lead to better treatment outcomes and improved satisfaction among 

persons receiving these services. Collaborations with mental health and substance abuse 

services, homeless shelters, and correctional facilities hold equal promise. 

Forum participants identified the need to determine ways to increase collaboration between 

TB programs and other health and social service agencies for related conditions (such as 

HIV/AIDS, mental health, and substance abuse) to improve TB diagnosis, case management, 

and integration of services. Specific areas for increased research include focusing on 

patients with multiple and varied needs, U.S.-Mexico border issues, and collaboration with 

correctional systems, Immigration and Customs Enforcement, and other agencies. 

2. Impact of sharing patient information 

Patients who have other health and/or social issues such as TB/HIV co-infection, diabetes, 

substance abuse, and mental health issues, in addition to TB or LTBI, may have multiple 

providers. The sharing of patient information becomes a crucial component in the provision 

of proper and effective health care, especially as it relates to a patient’s TB treatment 

regimen and follow-up care. Providers who take a holistic approach to their patient’s health 

and who thus have a complete picture of their patient’s health and well-being are better 

equipped to make well-informed decisions that ensure the most appropriate TB care and 

treatment. 
37 

Forum participants identified the need to focus upon the impact of sharing (or not sharing) 

patient information on case management, service coordination, and health outcomes among 

managing providers in varying settings, such as health departments and correctional, 

mental health, and substance abuse facilities. 

B. Service delivery 

The delivery of health services plays a major role in how patients receive TB care and 

treatment. From an organizational perspective, accessibility and acceptability of services, 

cost of services, and quality of care can often delay or prevent a person from seeking TB 

care and treatment. Through the use of patient-centered approaches and effective case 

management, these systematic barriers can be reduced or alleviated, resulting in improved 

provision of care and better treatment outcomes. 

1. Patient-centered approaches 

Patient-centered approaches focus on bringing together compassion, empathy, 

responsiveness, and resources to the needs, values, and expressed preferences of individual 

patients. Effective patient centered care is essentially a partnership between the provider 

and the patient. It involves determining individual patient needs and expectations while 

ensuring that efforts are made to address those needs and expectations by the health care 

provider(s). 

Forum participants recognized the potential benefits of delivering TB control services which 

embody a patient centered-approach, and suggested that additional research is needed to 

identify, compare, and standardize different methods and models for patient-centered care. 

2. Case management 

Quality case management is an important component of effective TB care. It holds the 

potential to increase treatment adherence and treatment outcomes by tailoring case 

management to the patient, by making appropriate referrals to needed health and social 

services, and helping to remove barriers to treatment success. However, little empirical 

evidence exists that systematically confirms the effect of the various types of case 

management practices. Part of the reason for this may be that many case management 

practices are not standardized and vary based on case management models and institutions. 

Forum participants identified the need to determine the influences of case management on 

multiple outcomes (e.g., treatment outcomes, reduced homelessness, care for substance 

abuse, receipt of other appropriate social and other health resources) as well as approaches 

to strengthen case management practices. 

3. Advantages and disadvantages of directly observed therapy 

Directly observed therapy (DOT), in which a health care worker or other qualified 

individual watches the patient swallow every dose of the prescribed drugs, is an extremely 

effective strategy for making sure patients take their medicines. DOT is strongly 

recommended as part of a patient-centered case management plan because it is difficult to 

reliably predict which patients will be adherent. Successful treatment programs are 

dependent upon public health programs and providers accepting responsibility for a patient’s 

care by ensuring that DOT is appropriately administered. 
38 

As TB incidence declines and programs are turning their attention to the treatment of LTBI, 

more TB programs are trying to use DOT for LTBI patients. Data indicating low 

completion rates among patients on treatment suggests the importance of determining the 

appropriate use for DOT with LTBI patients. 

Forum participants identified the need to conduct further research on the effectiveness of 

varying DOT modalities for LTBI and TB, such as clinic, home, or field-based DOT. Forum 

participants also raised the need to identify patient-centered DOT strategies that are most 

appropriate to the particular needs of patients, questioning the one-size fits all mentality. 

Participants also focused on the need to further delineate the usefulness of DOT in treating 

TB and other co-morbid conditions, such as HIV.

4. Role of incentives and enablers 

Research has shown that the use of incentives and enablers can enhance patient acceptance 

as well as adherence to treatment for both TB disease and LTBI. 

Incentives and enablers help patients continue and complete treatment and are widely used 

in facilities providing TB services. Incentives and enablers are most beneficial when they 

are tailored to the patient’s special needs and interests. Learning as much as possible about 

individual patients through the use of patient-centered approaches will help to identify their 

needs and better assist them in completing treatment. 

Forum participants identified the importance of further understanding the barriers and 

facilitators that affect the initiation, duration, and completion of treatment of LTBI and TB 

disease, and the role that incentives and enablers can have in achieving TB treatment goals, 

specifically for diverse populations, such as foreign-born persons and incarcerated or newly 

released prisoners. 

5. Contact investigations 

The contact investigation (CI) is an important component of TB prevention and control 

efforts, as it is a process for identifying persons exposed to someone with infectious TB, 

evaluating them for LTBI and TB disease, and providing appropriate treatment for LTBI or 

TB disease. In TB programs in the U.S., there is wide variability in the way in which 

contact investigations are conducted. Furthermore, the contact investigation can be sensitive 

for TB patients as they are required to elicit personal information, such as who they interact 

with, how often, and where. Little is known about the social and emotional impact of these 

investigations on the individuals involved and on the identification and follow-up of 

contacts. 

Forum participants identified the need to determine ways to improve contact investigations 

by, for example, gaining a better understanding of patient and contact perceptions and 

being more sensitive to involved parties to enhance contact investigation outcomes. Finally, 

more research is needed with providers to examine their perspectives on contact 

investigations. 

6. Health communications 

Health communications can be used to share information on TB with the general public, 

local communities, patients and contacts, as well as providers. Research has demonstrated 

that misconceptions about TB and the stigma associated with the disease still abound, 

suggesting the continuing need to increase knowledge and awareness of TB through 
39 

effective channels of communication. Further research to better understand informational 

needs, identify appropriate and effective media for channeling information, and testing 

health messages related to many aspects of TB for a variety of audiences will enhance the 

effectiveness of TB control efforts and hopefully mitigate the stigma associated with TB. 

Forum participants identified the need to identify specific and tailored messages and 

messengers for improving communication about LTBI and TB diagnosis and treatment 

among patients and providers, as well as among family members and within the community. 

7. Special challenges of high risk settings/populations 

a. HIV/TB 

Co-infection of TB and HIV presents challenges for both patients and the providers 

serving them. One challenge is related to the potential lack of collaboration among TB 

and HIV programs. It is important that TB providers offer HIV voluntary testing and 

counseling to both TB patients and high risk contacts, and that HIV providers offer TB 

screening and follow-up. Patients who have both TB and HIV may also face challenges 

associated with the burden of taking medicine for both diseases, as well as with the 

stigma associated with both illnesses. 

Forum participants identified the need to conduct research on patient, provider, and 

agency barriers to the integration of voluntary HIV testing and counseling in TB 

programs as well as the incorporation of TB services in HIV/AIDS programs. 

b. Homelessness, unstable housing, and mental health issues 

TB control also faces significant challenges when dealing with homeless populations or 

with individuals who may also be experiencing mental health or substance abuse issues. 

These issues, combined with a lack of stable housing, make TB screening and follow-up, 

diagnosis, contact investigations, treatment initiation, adherence, and completion of 

treatment extremely challenging. 

Forum participants identified as important the need to assess the TB knowledge, 

attitudes, and perceptions (KAP) as well as other influences on behavior of homeless 

populations. Participants also identified the need to consider using patient-centered case 

management strategies to identify and address competing health and social issues for this 

population. 

c. High mobility jobs and migrant labor 

Given their mobility, migrant farm workers and other migrant populations present unique 

challenges to TB prevention and control programs with respect to diagnosis, treatment, 

continuity of care, and contact investigations. U.S.-Mexico border issues, such as 

immigration and frequency of border crossings, create additional challenges. 

Forum participants suggested conducting descriptive and ethnographic research using 

case studies as a possible method, among this special population. This type of research 

might help to determine ways to access migrant networks, mechanisms for tracking 

patients in a non-stigmatizing way, and ways to increase completion of care. 
40 

d. Incarceration 

Jails and prisons pose a unique challenge for TB prevention and control. Efforts have 

been made to improve the relationships between health department TB programs with 

jails and prisons to enhance TB screening and follow-up among inmates and correctional 

personnel. In addition, continuity of care can be a particular challenge for TB patients 

who are incarcerated during treatment and who are later released from prison or jail while 

on treatment. 

Forum participants discussed the need to conduct further research to identify ways to 

improve TB screening activities, as well as adherence to and completion of treatment for 

incarcerated persons and newly released prisoners. In addition, participants called for 

further research to examine how screening and treatment for TB can be incorporated 

into the diagnosis and treatment for other diseases such as HIV. 

e. Substance use 

Substance abusers are at increased risk for TB. Substance abusers may have competing 

priorities that may prevent them from being diagnosed with TB, accepting and adhering 

to treatment regimens, and identifying contacts. 

Forum participants identified the need to better understand the TB knowledge, attitudes, 

and perceptions (KAP) of substance abusers as well as determine the best ways to 

address these issues, so that this population will receive the most effective TB care and 

services. 

f. Foreign born 

Although TB case rates have steadily declined since 1992, TB in foreign-born persons 

represents a significant challenge for TB control efforts in the United States. In 2002, TB 

case rates among the foreign born comprised 51% of reported TB cases in the U.S.2

 

Foreign-born populations may have unique cultural characteristics, practices, and 

circumstances related to their re-settlement and adjustment to the U.S., that may 

influence their TB treatment and care. 

Forum participants identified the need to acknowledge, understand, and incorporate 

different health-related cultural beliefs and practices of foreign-born patients. Other 

issues that warrant exploration included foreign-born persons’ perceptions of the U.S. 

health care system and/or the providers who deliver care, determining the role of gender 

and ethnic differences between patients and providers, and identifying and addressing the 

wide range of barriers foreign-born persons encounter when accessing services related 

to LTBI/TB diagnosis, treatment initiation, adherence, completion, and follow-up. 

g. Pediatrics 

Children with LTBI and TB represent another population with unique characteristics and 

needs, as the prevention, diagnosis, and treatment of children is often dependent upon the 

role of the parent, primary care giver, and other adults. 

Forum participants felt it was important to conduct research to test alternative models to 

increase LTBI and TB screening and treatment among children. 
41 

V. Community 

Influences that are community-related affect behavior on both small and large-group 

levels, such as those in community settings. Examples include influences of family and 

social networks on individuals, the relationship between local health services and 

individuals/communities, and the impact of social stigma of TB on groups. 

A. Impact of TB services on communities and patients 

Whether defined by a geographic region, a common interest, or shared ethnic or cultural 

background, communities play an important role in people’s lives. Because a community 

typically shares a set of common interests and values and gains strength from this collective 

entity, it is important for health care providers to understand the communities they serve to 

effectively meet the community’s needs. Developing a respectful, collaborative relationship 

with communities may strengthen the delivery of health services and improve the general 

health and well-being of communities as a whole. 

Forum participants identified the need to determine the perceptions of TB within 

communities and to understand the origins of those perceptions and the influence of forces 

that affect people’s perceptions, such as the media. Participants also expressed the need to 

develop tailored, culturally-specific interventions to increase understanding of TB and 

reduce the stigma associated with TB. 

Participants across all groups discussed the need to determine the optimal relationship 

between health departments and the local communities they serve, as well as the role of 

community groups like community-based physicians in increasing TB awareness and 

delivering TB services. Suggestions were made to conduct more participatory action 

research and to define and determine how local communities can become involved in locally 

driven research. 

1. Influences of family and social networks 

Family groups and social networks have been shown to be extremely influential on many 

different health outcomes. In terms of TB outcomes, this influence can manifest itself 

positively by facilitating or supporting, for example, care-seeking, treatment adherence, and 

other patient behaviors. Conversely in other cases, misconceptions held by those close to 

individuals with TB can have negative effects such as increasing the level of stigma attached 

to the disease resulting in social ostracism or isolation. Furthermore, family units and social 

networks are often adversely affected by the introduction of TB and the consequent stressors 

into their networks. Successful TB control efforts based on a strong understanding of these 

issues may maximize the positive influences of social networks and minimize disruptions to 

family and social networks. 

Forum participants identified the need to better understand the role of social networks on 

health behaviors and determine strategies for strengthening the positive influences of social 

networks. Specific focus was given to identifying ways in which TB programs can work with 

families to better understand and mitigate the impact of TB services on social networks. 
42 

2. Social stigma

Evidenced both in research and in practice, stigma associated with TB appears to be 

universal. The consequences of stigma can be seen affecting care-seeking behaviors, as 

persons have been known to hesitate or choose not to disclose their TB status to family or 

friends out of fear of being socially ostracized. Research has demonstrated that in some 

cases, personal rejection occurs as a result of the strong stigma surrounding TB. Stigma has 

also been shown to hinder adherence to treatment. By identifying both the sources and 

consequences of stigma, social science research has illustrated the need for effective 

intervention strategies. 

Social stigma was an issue raised in all of the breakout groups, highlighting the shared 

perception of the need to better understand its sources and identify effective ways to address 

it. During breakout discussions, forum participants specifically noted the need to define 

stigma from various perspectives, identify existing research to understand the impact of 

stigma, and propose specific measures to address and reduce stigma. Among these 

measures, it was suggested to identify ways in which the public health community can alter 

its presentation of epidemiologic data to avoid the perpetuation of existing stigmatizations 

and to reinforce that TB is a curable disease. 

Proposed research questions focused on identifying the effects or consequences of stigma on 

care seeking and adherence to treatment, and determining whether certain populations or 

sub-populations are adversely affected by stigma. 

VI. Public Policy 

Public policy influences focus on the implications that public policies have on the 

behaviors of individuals, groups, communities, and organizations with special 

emphasis on issues relating to government commitment, funding, health insurance, and 

immigration policies.

A. Government commitment and funding 

Governmental entities, from federal to local, play a critical role in TB-related services. 

From federal-level research funding to service delivery at local health departments, TB 

control is influenced greatly by policy decisions. Given these arrangements, the 

development of a better understanding of the policy process and greater engagement of 

decision-makers by those working in TB control may lead to improvement in TB services. 

Forum participants identified as important the need to focus on identifying appropriate 

decision makers, potential advocates, and strategies to influence TB-related policies. They 

also specifically addressed funding issues such as the identification of effective ways to 

advocate for TB funding as well as possible models for allocation of funds within the TB 

framework. 
43 

B. Health insurance 

As of 2002, data from the U.S. Census Bureau indicated that 43.6 million people were 

uninsured in the United States.3 The lack of health insurance among people in the U.S. 

creates a serious impediment for those who seek or wish to seek health care for LTBI or TB 

disease, especially as it relates to TB testing and treatment. It is unknown to what extent a 

lack of appropriate insurance coverage or fear of treatment costs hinder care-seeking, but it 

is suspected that this economic deterrent has clear negative implications. 

Forum participants identified the need to determine the effect of health insurance or lack of 

appropriate coverage for TB services on health behaviors and health outcomes, including 

access to TB diagnosis and treatment. Further research is needed to determine the impact 

this has on TB patients and their families, in addition to finding alternative funding 

solutions to increasing health care costs and expenses. 

C. Immigration policies 

With over half of TB cases in the United States occurring among individuals born outside of 

the country, the link between immigration and TB services has become increasingly 

important in recent years. Efforts to coordinate public health efforts with immigration 

activities pose an evolving challenge as changes occur to immigration policy and 

enforcement agencies. Understanding the impact of these specific changes, as well as 

developing a broader body of knowledge of immigrant issues in general, will likely lead to 

improved TB services and better health outcomes. 

Forum participants identified as important the need to focus on the effect of immigration 

policies, specifically regarding recent changes to policies, on TB services. Additional 

discussion focused on the need to develop strategies for collaboration with immigration 

authorities to increase access to immigrant communities. 

References 

1. Racial Disparities in Tuberculosis - Selected Southeastern States, 1991–2002; 

 MMWR; 2004: 53. No. 25. 

2. CDC. Reported Tuberculosis in the United States, 2002. Atlanta, GA: U.S. 

 Department of Health and Human Services, CDC, Sept 2003. 

3. The United States Census Bureau. The Health Insurance Coverage: 2002 page. 

 Available at http://www.census.gov/
44 

Section IV. Appendices 

Appendix A: Forum Agenda 

Tuberculosis Behavioral and Social Science Research Forum Agenda 

Planting the Seeds for Future Research 

December 10–11, 2003 ● Sheraton Colony Square ● Atlanta, Georgia 

DAY 1: Wednesday, December 10, 2003 

Time Session Presenter(s) 

7:00 am - 8:30 am Registration and Breakfast 

8:30 am – 8:40 am Welcome Nick DeLuca, M.A. Lead Health 

Education Specialist, DTBE, 

NCHSTP 

8:40 am – 9:00 am Opening Remarks Harold Jaffe, M.D. Director, NCHSTP 

Ken Castro, M.D. Director, DTBE, 

NCHSTP 

Wanda Walton, Ph.D. Chief, 

Communications, Education, and 

Behavioral Studies Branch, DTBE, 

NCHSTP 

9:00 am – 9:30 am When Sacred Cows Become 

the Tiger’s Breakfast: Defining 

a Role for the Social Sciences 

in TB Control 

Perspectives from TB Programs 

Jessica Ogden, Ph.D. Technical 

Specialist, International Center for 

Research on Women 

Masae Kawamura, M.D. Director, San 

Francisco TB Control 

9:30 am - 9:45 am Preliminary Results from the 

Behavioral and Social Science 

Literature Review 

Cathy Rawls, M.P.H., C.H.E.S. ASPH 

Research Fellow, DTBE, NCHSTP 

Cristina Booker, M.P.H. Research 

Analyst, Abt Associates, Inc. 
45 

DAY 1: Wednesday, December 10, 2003 (cont.) 

9:45 am – 10:45 am Neighborhood Health 

Messages: Using local 

knowledge, trust, and 

relationships to create 

culturally effective TB 

education and care for 

immigrant and refugee families 

Psychosocial, Social, 

Structural, and Environmental 

Determinants of TB Control 

Stefan Goldberg, M.D. Medical 

Officer, DTBE , NCHSTP 

Donald E. Morisky, Sc.D., M.S.P.H., 

Sc.M. Professor, UCLA School of 

Public Health 

10:45 am – 11:00 am Break 

11:00 am – 12:15 pm Community Perspectives in TB 

Control and Elimination 

Facilitator: 

Robin Shrestha-Kuwahara, M.P.H., 

Behavioral Scientist, DTBE, NCHSTP 

Panelists: 

Representatives from DeKalb County 

and Fulton County Public Health 

Departments 

12:15 pm – 1:15 pm Lunch 

1:15 pm – 1:45 pm Interactive Group Discussion 

of Morning Sessions 

Mark Nichter, M.A., Ph.D., M.P.H 

Professor, University of Arizona 

1:45 pm – 2:00 pm Charge to Breakout Session 

Groups 

Robin Shrestha-Kuwahara, M.P.H. 

Behavioral Scientist, DTBE, NCHSTP 

2:00 pm – 3:45 pm Breakout Group Sessions I: 

Identifying Research 

Gaps/Needs Groups A & B: 

Internal Influences Groups C 

& D: External Influences 

Facilitators: 

Kelly McCarrier, M.P.H. Rachel 

Albalak, Ph.D. Gaby Benenson, 

M.P.H. Betsy Carter, M.P.H., 

C.H.E.S. 

DTBE, NCHSTP 

3:45 pm – 4:00 pm Break (Reconvene in large 

group) 

4:00 pm – 5:00 pm Report and Discussion of 

Breakout Group Sessions I (10 

minutes for each group) 

Paul Colson, Ph.D. Program Director, 

Charles P. Felton National TB Center 

5:00 pm Adjourn 
46 

DAY 2: Thursday, December 11, 2003 

7:30 am – 8:30 am Breakfast 

8:30 am – 8:40 am Overview of the Day’s 

Activities 

Nick DeLuca, M.A. Lead Health 

Education Specialist, DTBE, 

NCHSTP 

8:40 am – 10:40 am Breakout Group Sessions II: 

Determining and Prioritizing 

Research Questions/Methods 

Groups A & B: Internal 

Influences Groups C & D: 

External Influences 

Facilitators: 

Kelly McCarrier, M.P.H. Rachel 

Albalak, Ph.D. Gaby Benenson, 

M.P.H. Betsy Carter, M.P.H., 

C.H.E.S. 

DTBE, NCHSTP 

10:40 am – 11:00 am Break 

11:00 am – 12:30 pm Report and Discussion of 

Breakout Group Sessions II 

(10 minutes for each group) 

Paul Colson, Ph.D. Program Director, 

Charles P. Felton National TB Center 

12:30 pm – 1:30 pm Lunch 

1:30 pm – 2:30 pm Turning Research into Practice 

Panel Discussion 

Facilitator: 

Jane Mezoff, Dr.PH., Behavioral 

Scientist, DTBE, NCHSTP 

Presenters: 

Shawna Mercer, M.Sc., Ph.D. Health 

Scientist, Public Health Program 

Practice Office, CDC 

Agatha Eke, Behavioral Scientist, 

Division of HIV/AIDS Prevention, 

NCHSTP 

Leslie Boss, M.P.H., Ph.D. Air 

Pollution and Respiratory Health 

Branch, CDC 

2:30 pm – 2:45 pm Break 

2:45 pm – 4:00 pm Potential Funding 

Opportunities Maintaining the 

Momentum: Recap and 

Next Steps Closing Remarks 

Kate O’Toole, M.B.A. Associate 

Director of Management and 

Operations, DTBE, NCHSTP 

Nick DeLuca, M.A. Lead Health 

Education Specialist, DTBE, 

NCHSTP 

4:00 pm Adjourn 
47 

Appendix B: Presentation Slides 

BEHAVIORAL AND SOCIAL SCIENCE RESEARCH IN TUBERCULOSIS CONTROL

Kenneth G. Castro, MD 

Director, Division of Tuberculosis Elimination 

Centers for Disease Control and Prevention 

Behavioral and Social Science

Research in TB Control

Kenneth G. Castro, M.D.

Assistant Surgeon General, USPHS

Director, Division of Tuberculosis Elimination

National Center for HIV, STD, and TB Prevention

Centers for Disease Control and Prevention

Tuberculosis Behavioral and Social Sciences

Research Forum, December 10-11, 2003

• 1950s: “Health Belief Model” examined 

motivators of free TB screening programs

• Recently behavioral research studies 

emphasized treatment adherence

Behavioral and Social Science

Research in TB Control

 

Behavioral and Social Science

Research Efforts in TB Control

• 1994: TB and Behavior: National Workshop on 

Research for the 21st Century (CDC co-sponsor)

• 2000: IOM Report, Ending Neglect: The 

Elimination of Tuberculosis in the United States

• 2003: TB Behavioral and Social Science 

Research Forum
 Kenneth G. Castro, MD 

Behavioral and Social Science 

 Research in TB Control 

48 

Themes from 1994 Conference 

• How to inform the public about TB and 

overcome stigma?

• How to identify and reach persons at highest 

risk for TB?

• How to increase patient adherence?

• How to improve provider practices?

• How to identify and implement the best mix of 

TB control services? 

“Studies are needed to 

determine how basic 

behavioral theories can 

enhance understanding for 

the creation of tailored 

interventions for high risk 

populations”

–Institute of Medicine Report, Ending Neglect: The 

Elimination of Tuberculosis in the United States, 2000 

IOM Call for Behavioral Science Research

• Explore impact of behavior change models on 

health seeking and adherence

•Identify cultural barriers to Rx, P&C, and role of 

incentives and enablers

• Tailor adherence interventions to needs, 

lifestyles, social support system, and beliefs

• Ensure translation of research into TB programs

Role of Behavioral and Social Science

Research in TB Control (1)

•Individual and interpersonal health behavior 

research 

–Patient care seeking behavior

–Patient adherence behavior

–Provider behavior

–Health care service delivery

 

Role of Behavioral and Social Science

Research in TB Control (2)

• Systems research

–Health systems structure and 

organization

–Environmental, economic, and 

sociopolitical dynamics

–Policies and laws

Role of Behavioral and Social Science

Research in TB Control (3)

• Identify, understand, and address broad 

range of relevant socio-cultural, 

behavioral, and structural issues

• Engage systematic, theory-based, 

mutidisciplinary research with 

scientifically rigorous experimental and 

quasi-experimental designs
49 

BEHAVIORAL AND SOCIAL SCIENCES IN TUBERCULOSIS ELIMINATION

Wanda Walton, Ph.D. 

Chief, Communications, Education, and Behavioral Studies Branch 

Division of Tuberculosis Elimination, 

Centers for Disease Control and Prevention 

Behavioral and Social Science in 

Tuberculosis Elimination

Wanda Walton, PhD

Communications, Education, and Behavioral 

Studies Branch

Division of Tuberculosis Elimination

Building TB Behavioral and Social 

Science Capacity within DTBE

Communications, Education, and Behavioral 

Studies Branch

• Conduct research on individual and social 

factors affecting health seeking and treatment 

outcomes related to TB

• Provide consultation

• Provide technical assistance

• Coordinate behavioral science activities of 

DTBE, CDC, and others

Building TB Behavioral and Social Science 

Capacity within DTBE (cont.)

• Division staff with behavioral and social 

science backgrounds

– Communications, Education, and 

Behavioral Studies Branch 

– Clinical and Health Systems Research 

Branch, Health Systems Research Team

• Association of Schools of Public Health 

fellows

Selected Current Behavioral and 

Social Science Projects in DTBE

 
Wanda Walton, Ph.D. 

Behavioral and Social Sciences 

in TB Elimination 

50 

Patient Studies

Perceptions of TB Among Foreign-born 

Persons: An Ethnographic Study

• To understand the culturally-mediated perceptions, 

attitudes, and experiences regarding TB among five 

foreign-born populations in the U.S.

Culturally Appropriate Patient TB Education 

Materials

• To develop culturally and linguistically appropriate 

patient TB education materials

Patient Studies (Continued)

Social Network Techniques in Expanding 

Women’s Access to LTBI Treatment

• To assess the usefulness of social network 

techniques as tools to increase the identification of 

women during contact investigations

Study of Factors Associated with Acceptance of 

and Adherence to Treatment for LTBI 

• To assess the knowledge, attitudes, and culturespecific beliefs about LTBI among several high risk 

groups

 

Provider Studies

Identifying Barriers to the Implementation of the 

2000 Targeted Testing and Treatment for LTBI 

Recommendations among Private Providers

• To Identify barriers to the acceptance, 

implementation, and adherence to the guidelines and 

development of strategies to overcome barriers

Factors Influencing Health Care Worker 

Adherence to Worksite TB Screening and 

Treatment Policies

• To identify factors that facilitate or hinder health care 

workers’ abilities or decisions to adhere to local 

protocols for annual TST and LTBI treatment

Research Activities in the TB 

Epidemiologic Research Consortium

• Task Order 11: Addressing TB Disease Among 

African Americans in the Southeast

• Task Order 12: Assessing TB Knowledge, 

Attitudes, Beliefs, and Practices Among Private 

Providers Serving Foreign-born Populations 

• Task Order 14: Developing Culturally Appropriate 

Educational Materials for Hispanic Service 

Organizations

 

Planting the Seeds for Future Research

 

TB Behavioral and Social Science 

Research Forum - 2003 

Goals

•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 over a 5-year period
Wanda Walton, Ph.D. 

Behavioral and Social Sciences 

in TB Elimination 

51 

Planned TB Activities Related to the Forum

• Systematic inventory and review of published 

TB behavioral and social science literature

• A behavioral science list-serv for ongoing 

discussion and information exchange

• Ongoing workgroups on derived themes

Tuberculosis is a social disease, 

and presents problems that 

transcend the conventional 

medical approach.

Rene and Jean Dubos

1952

 

We’ve only just begun...

Karen Carpenter

 
52 

KEYNOTE SESSION

WHEN SACRED COWS BECOME THE TIGER’S BREAKFAST: DEFINING A ROLE FOR THE SOCIAL 

SCIENCES IN TUBERCULOSIS CONTROL

Jessica Ogden, Ph.D. 

Technical Specialist 

International Center for Research on Women 

When sacred cows becomes the 

tiger’s breakfast:

towards defining a role for the social and 

behavioral sciences in TB control

Jessica Ogden

 

• John Porter, London School of Hygiene & Tropical Medicine

• Mukund Uplekar, Communicable Diseases Cluster (Stop TB), WHO

• Sheela Rangan, MaharashtraAssociation of Anthropological Sciences

• Varinder Singh, LalaRam Swarup Institute of TB and Allied Diseases

• Christian Lienhardt, Institute Research du Developpment, Senegal

Acknowledgements

• Situating a social science perspective

• Defining our roles:

•Who are we not? orientations and contributions of the medical 

sciences in public health/TB control

•Sacred cows whose time has come 

•Who are we instead? Strengths (and limitations) of social/behavioral 

science approaches (and another ‘sacred cow’)

• Proposed (draft) framework

• Key questions a multi-disciplinary approach can answer

• Some principles to guide our way forward

Overview of presentation

 

Addressing the microbe in relation to an individual or population

Establishing foundations for diagnosis & treatment

Epidemiology: interactions between infectious agent, the host and 

the environment: 

? identify source of infection; interrupt transmission

 Microbiology & genetics

? understanding the bacteria and developing new drugs

 Immunology & molecular biology

? refining response to infection and developing new vaccines

Classical Public Health Paradigms: 

‘elimination of disease’ orientation
Jessica Ogden, Ph.D. 

 When Sacred Cows Become 

 the Tiger’s Breakfast 

53 

• Cholera epidemic in London,1854

• John Snow identifies source of infection (water supply)

• John Snow removes pump handle (interrupts transmission)

• Cholera epidemic ends

• Theory of disease transmission proved

• Deaths prevented

• Community empowered?

Sacred Cow #1: the Broad Street pump handle

 

Control in the community 

? May lead to neglect of wider social realities: ordinary life, poverty, 

health care system constraints

 Power and Agency: who has them and who does not?

? Who has the power to determine success? Who ‘should’ have it?

? Are people able to take the actions we suggest?

? Are people willing to take these actions?

 Questions of trust: does the control paradigm foster or challenge 

efforts to build trust?

Sacred Cow #2: TB and the limits of ‘control’

Those of us involved in TB would do well to 

consider a shift in paradigm - a shift from a 

focus on control to a focus that privileges care.

• Attentive to Trust

• Fostering Partnership 

 

Understanding how the person and the disease interact in 

context of everyday life

 Health outcomes understood in terms of context 

 People’s responses to ill health made intelligible

 Individual ‘nested’ within layers of social context 

? influencing whether individuals are able and willing to 

obtain, maintain and complete treatment

Relating the individual to the local, national and the global

Social Science Paradigm: wellbeing orientation

“the production of health”

PATIENT

Household

Community

Health & Social Services

Policy

 

Study of ‘beliefs’ and ‘behaviors’ alone will not answer our 

questions

• what people think and what people do mediated by elements 

of culture but also by elements of social structure (e.g. poverty)

affects availability, accessibility and acceptability of 

health care options

impacts on agency - freedom/ability to make choices 

within a range of options, or the ability to take action 

according to belief

Does not account for global and local power relations that 

produce and shape sickness and health

Sacred Cow #3: ‘beliefs’ and ‘behaviors’
Jessica Ogden, Ph.D. 

 When Sacred Cows Become 

 the Tiger’s Breakfast 

54 

Who can adopt the sick role, and when

Range of treatment optionsavailable

Extent to which a given person has accessto Rx

Extent to which a given person will obtain 

diagnosis & Rx

Extent to which a given person can adhere to Rx

These are all aspects to which research and policy can 

respond

Social structures within household, community, 

polity determine

 

PROGRAMMES

DONORS & POLICY

MAKERS

HEALTH SERVICES

(PROVIDERS)

COMMUNITY &

HOUSEHOLDS

PATIENTS

Interviews 

Case studies

Mapping

focus groups discussions

key informant interview

participant observation

field diaries

Semi-structured questionnaires

ethnographic survey

informal interviews

Semi-structured, open ended Interviews

pre-coded questionnaires

non-participant observation

facility assessment

workshops with practitioners

involvement of NGOs

Stakeholder analysis

Semi-structured 

interviews

Focus group discussion

Key informant interviews

Combines strengths of medical sciences and social/behavioral

sciences

Answering the ‘why’ questions

? Why don’t patients come for treatment?

? Why do they only come when it’s too late?

? Why don’t they complete their therapy?

Answering the ‘how’ questions

? How can we make our programs accessible and acceptable?

? How can we meet health needs of community?

? How can communities be involved as participants in their own health?

Multi-disciplinary Approach
55 

KEYNOTE SESSION

BEHAVIOR, SOCIETY AND TUBERCULOSIS CONTROL

Masae Kawamura, M.D. 

ACET Chairperson 

Director, Tuberculosis Control Section 

San Francisco Department of Public Health 

Tuberculosis Clinic, Ward 94 

San Francisco General Hospital 

Behavior, Society and 

Tuberculosis Control

L. Masae Kawamura, M.D.

Director, TB Control Section

San Francisco Dept. of Public Health

Program Perspective

• If TB control was exclusively related to 

its biologic cause and biologic cure, we 

would be close to eradication

• But TB persists.....why?

- Root causes are imbedded in society

-Successful TB Control depends on

the behavior of individuals at all levels:

patient, provider, program and society

 

Where we are...

Good news: TB incidence is at an all time low 

Take a closer look: 

• FB cases essentially unchanged (24% 

Mexican-born)

• US born cases are dominated by African 

Americans and minorities

• Case rates in inner cities and in poor 

communities in the SE US are as high as 

rates in developing countries

• Outbreaks continue all over the US despite 

contact investigation 

Where we are...

TB has retreated in populations that are most 

difficult to reach

• Disenfranchised homeless

• Addicts and substance users

• Impoverished communities

• Incarcerated

• New and old immigrants

• Individuals who move freely across the 

border

 
Masae Kawamura, M.D. 

Behavior, Society and 

Tuberculosis Control 

56 

TB Control success...

We are premier experts on effective behavioral 

strategies to improve adherence and 

patient/provider relations

• Patient centered DOT 

• Hiring culturally appropriate staff and providing 

cultural competence training and mentoring

• Use of housing, food, transportation vouchers, 

cash, methadone, education, etc as enablers 

and incentives

What we accomplished and continue 

to strive for..

TB Control is about building and maintaining 

supportive/trusting relationships with 

patients and their communities

• Repairing societal connections with the 

disenfranchised

• Creating societal connections with those 

who are not yet integrated in society 

We have done so much but it is 

not enough...

Long way to go in engaging patients, 

providers, communities and society : 

• undocumented persons and those living 

on both sides of the US-Mexico border

• Minority communities

• New immigrants

Contact investigation: methods and 

treatment adherence

Yet to be addressed...

Health promotion and prevention

• Integration of targeted testing and LTBI 

treatment as a primary care issue 

• Adherence to LTBI treatment beyond 

traditional approaches of education, 

incentives and enablers

Addressing the root causes

• Mobilizing communities and countries to take 

action

• Translating TB information into a meaningful 

format 

What behavioral and social 

science research can do for TB 

control..

• Validate what we are doing right and wrong

• Introduce new behavioral strategies that have 

been proven in other fields

• Refine current successful behavioral 

strategies to improve implementation

• Determine when integration strategies are 

appropriate and or harmful

• Frame TB data in its full context with 

demographics, social determinants, other 

health disparities and incidence of other 

diseases so it is meaningful to society 

Word of caution about research 

and research application

• Research interventions must be 

practical and well thought through

• If new resources will be needed for 

implementation, cost savings and health 

benefits should be well characterized

Remember: civil service front-line staff 

may prove to be very different than 

dedicated research staff
Masae Kawamura, M.D. 

Behavior, Society and 

Tuberculosis Control 

57 

Although we may need to take a more 

“macro” approach to furthering our 

success in TB control, let us never 

forget the individual approaches and 

strategies that have made us incredibly 

successful.

 
58 

PRELIMINARY RESULTS FROM THE TUBERCULOSIS BEHAVIORAL AND SOCIAL SCIENCE 

LITERATURE REVIEW

Cathy Rawls, M.P.H., C.H.E.S. 

ASPH Fellow 

Division of Tuberculosis Elimination, 

Centers for Disease Control and Prevention 

Cristina Booker, M.P.H. 

Analyst 

Public Health Applications and 

Research Area 

Abt Associates Inc. 

0

TB Behavioral and Social Science Research 

Literature Review

Presented by:

Cathy Rawls, M.P.H., CHES, 

ASPH Behavioral Research Fellow, DTBE, CDC

Cristina Booker, M.P.H., 

Abt Associates, Inc.

Tuberculosis Behavioral and Social Science Research Forum

December 10-11, 2003

 1

Literature review and 

database development

Activities:

 Created abstraction form and guide 

 Reviewed and analyzed articles

 Developed access database

 Synthesized preliminary results

3

Literature review methods

Search strategy:

 Conducted in OVID across 5 databases 

CINAHL, Embase, Medline, PsycInfo, and Sociofile

 Focused on behavioral, sociological, and 

cultural factors for TB prevention and 

treatment

 Used refined subject headings and keywords

 4

Inclusion criteria

 TB research that used social science methods 

or applied social science theory or concepts 

 Published after 1980

 US-based and/or international literature in 

English

 Published works (including scientific, peerreviewed literature, review articles, books 

(including book chapters), and meta-analyses)
 Cathy Rawls, M.P.H., CH.E.S./Cristina Booker, M.P.H. 

 Preliminary Results from the TB Behavioral 

and Social Science Literature Review 

59 

4

Key items abstracted

 Study descriptions and methods

Topic areas, study design, theory, sampling design, data 

collection methods, target populations, geographical and 

structural settings

 Key results/findings

 Limitations

 Conclusions

 Recommendations 

 5

Article types

175 documents reviewed/abstracted 

(mostly peer-reviewed journal articles)

~33 involved interventions

59%

12%

29% Research

Evaluation

Non-research

6

Explicit domains addressed (n=175)

0%

10%

20%

30%

40%

50%

Patient Adherence (n=82)

Cultural/Social, incl. K-A-B (n=78)

Structural Influences (n=57)

Health Seeking Behavior (n=33)

Provider Adherence (n=25)

Other (n=21)

 7

Geographic locations (n=175)

30

63

82

n

17

36

47

%

U.S.-based

International-based

Non-location specific (e.g., 

concept/position papers)

Literature

8

U.S. target populations (n=175)

0%

5%

10%

15%

20%

25%

Ppl with TB (n=33) US-born rac/eth groups (n=32) Foreign-born in US( n=28) Patients (n=26) Hlth Care Providers (n=14) Homeless (n=12) Substance Users (n=12) Low-income Persons (n=12) General Popn (n=11) Ppl with HIV/AIDS (n=8) Ppl with LTBI (n=8) Ppl with MDRTB (n=5) Migrant Farm workers (n=5) Students (univ/coll) (n=4) Ppl in corrections (n=2) Other (n=9)

 9

International target populations (n=175)

0%

5%

10%

15%

20%

25%

30%

35%

40%

Ppl with TB (n=65)

Patients (n=33)

Low-income Persons (n=22)

General Popn (n=14)

Hlth Care Providers (n=11)

Substance Users (n=4)

Homeless (n=3)

Ppl with HIV/AIDS (n=3)

Students: univ/college (n=1)

Ppl with LTBI (n==1)

Ppl with MDRTB (n=1)

Other (n=6)
 Cathy Rawls, M.P.H., CH.E.S./Cristina Booker, M.P.H. 

 Preliminary Results from the TB Behavioral 

and Social Science Literature Review 

60 

10

Themes from the literature review

Underlying social/cultural factors:

• Poverty, gender differentials

• Health beliefs

Health seeking behavior: 

• Barriers and facilitators to care

Patient-related adherence:

• Social support, economic aid, & education

Provider-related adherence:

• Medical education about TB diagnosis & 

treatment

 11

Themes from the literature review (cont.)

Health education strategies: 

• Essential for TB control/eradication

TB control/eradication strategies:

• Integration with other health services

Resource/funding allocations:

• Interdisciplinary research and interventions that 

integrate biological, psychological, behavioral, 

and social variables

12

Next steps: literature review report

 Based on the data abstraction forms & Access 

database

 Features:

Descriptive data

Key outcomes/results

Needs, gaps, and recommendations for future 

research or practice

 Expected to be finalized for CDC in early 2004

 13

Next steps: database

 Created in Access to store the data abstraction 

forms

 Database features:

Keyword searches

Preset queries and reports

 Expected to be finalized for CDC in early 2004

14

Acknowledgements

Literature review team:

CDC Team Abt Assoc. Team

Nick DeLuca Cristina Booker

Kelly McCarrier Ted Hammett

Jane Mezoff Brandon Long

Cathy Rawls Jotham Stavely

Robin Shrestha-Kuwahara
61 

NEIGHBORHOOD HEALTH MESSENGERS: USING LOCAL KNOWLEDGE, TRUST AND 

RELATIONSHIPS TO CREATE CULTURALLY EFFECTIVE TUBERCULOSIS EDUCATION 

AND CARE FOR IMMIGRANT AND REFUGEE FAMILIES

Stefan Goldberg, M.D. 

Medical Officer 

Division of TB Elimination, 

Centers for Disease Control and Prevention 

Neighborhood Health Messengers

Using local knowledge, trust, and 

relationships to create culturally effective TB 

education and care for immigrant and 

refugee families

.

Patrick Chaulk, MD, MPH

Annie E. Casey Foundation

Baltimore City Chest Clinic

Johns Hopkins Schools of Medicine and Public Health

Baltimore, MD

Stefan Goldberg, MD

CDC

 

Impact of Immigrants and refugees

on U.S. Culture

• Large influx of immigrants and refugees during the 

1990s:

– Increasingly a multi-cultural nation

• Over 300 languages spoken in the U.S.

– Nearly 20% of the U.S. population speaks a language other than 

English:

– Spanish speakers increased by 43% between 1990 and 2000

– Over 21 million individuals self-report that they speak English less 

than “very well”.

• Virtually all these refugees and immigrants come from 

countries endemic with TB

– FB account >50% of all active US cases

– TB is the leading marker for racial health disparities

Source: US Census, CDC, National Center for Health Statistics

Seattle’s Cultural Case Management Program: 

2,194 immigrants tested 1999 - 2000

442 offered treatment

389 (88%) started on treatment 

319 (82%) completed 6-9 month regimen

(vs. 60% nationally, 37% Seattle)

93% of client encounters also involved 

discussions about housing, ESL, mental

and physical health, employment and 

employment training, child care, 

transportation .

Program Performance Measures

Therapy acceptance rates

Treatment completion rates

Referrals for other social services

 

1998 Seattle-King County IPT 

assessment & epidemiology 

• Epidemiology

– 67% of cases foreign-born

– Greatest immigration from Former Soviet Union, Former 

Yugoslavia, and Somalia

• Findings

– Continued growth in demand for TB clinic services

– TB clinic move to Harborview Medical Center, site of 

Community Housecalls and Ethnomed programs

• Recommendations

– Stop “routine” TB clinic preventive therapy except for highest 

risk (ie. “regardless of age” categories and children)

– Develop Cultural Case Management program in 

partnership with Community Housecalls
 Stefan Goldberg, M.D. 

 Neighborhood Health Messengers 

62 

Cultural Case Management for 

Treatment of Latent TB Infection

• Federal and grant-funded partnership with 

Harborview Medical Center for “bilingual, 

bicultural case management.”

• Three major groups of new refugees and 

immigrants: Somali, Bosnian, and RussianUkrainian. 

• All refugees evaluated by the TB Clinic were 

evaluated in a custom-designed database 

January 1999 through June 2001.

 

Cultural Case Management 

Principles

• Based on experience of Harborview 

Medical Center’s Community Housecalls 

Program

– 2-way communication and support between 

providers and affected individuals and 

communities

– Case Managers - Cultural Mediators (CCM)

• Bilingual, bicultural program using local knowledge to 

create trust and relationships among immigrants and 

refugees.

• Extensive community mapping/participatory 

research approach

– Identify local assets, understand local culture and practice.

• Recruit and train community residents to:

– Help create effective messages and education strategies

– Serve as TB field workers and case managers

– Conduct extensive neighborhood outreach to:

» Recruit residents for TB testing and therapy 

» Assist with clinic visits, home delivery of medications

» Conduct at least monthly house calls; twice-a-week 

phone calls;

» Establish social networks; assist with other needs.

Neighborhood Health Messengers:

“Cultural Case Managers (CCM)”

 

Characteristics of Effective CCMs • Knowledge:

– Of refugee language beyond mere translation: 

refugee cultures, customs, beliefs, gender roles, 

family structure. Creates credible messages.

• Experience:

– With history of effectively serving the target refugee 

community. Creates relationships.

• Social standing:

– Highly regarded in the target refugee community: 

just “being from the community” is necessary but not 

sufficient. Creates trusted messengers.

• Capacity:

– Belief in and ability to explain U.S. medical 

strategies and its complex health care system. 

Creates effective education.

Therapy acceptance rates (’96-’98 vs. ’99-’00)

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Bosnian Somali Russian

'96-'98

'99-'00

98% 92%

76%

N= 389 (88%)

54% 57% 55%

 

Therapy completion rates (’96-’98 vs. ’99-’01)

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Bosnian Somali Russian

1996

2000

79%

89%

95%

N = 319 (82%)

49%

33%

45%
 Stefan Goldberg, M.D. 

 Neighborhood Health Messengers 

63 

Elements of Success

• Interviews suggest the success of this 

program is largely due to the outreach 

workers building trusting relationships 

with their clients. 

– Bilingual, bicultural

– Patient-centered, community-centered 

approach

– Supporting needs identified by the patient and 

the community

 

Tasks Activities Objectives Goal

Neighborhood Health Messenger Logic Model: 

Action steps for improving family and community health.

Phase I: Initial Start -Up

-Develop planning group of 

critical partners

-Choose anchor agency

-Community mapping

-Identify/recruit residents

-Peer training for residents

-Consensus on vital issues

-Secure funding

Phase II: Implementation

Launch door -to-door 

outreach and education 

Evaluate track 

Connect families 

Advocacy

Phase III: Sustainability

--Institutionalization

-Resident leadership

-Social networks

-Communities

organized to obtain 

better services 

-Community/public 

partnerships

-Increased insurance

coverage and more

educated families 

and community

-Families 

connected to 

providers

Improved 

Health Status

Getting Started:

-Identify/include critical team members

-Establish regular meetings for 

planning, ongoing program monitoring

Implementation

-Develop service menu, educational

resources and other benefits to share 

as part of door -to-door outreach

specific to your community needs. 

-Develop data collection, analysis and

reporting systems to evaluate and 

monitor program progress

-Obtain data system TA 

-Provide periodic reports to partners,

funders, and community members

Make Long Term Connections Between:

-Families and Medical providers 

-Families and Resources/Services

-Communities and Health Policymakers

-Communities and Health Systems

Haitian Health Care Alternatives

Traditional Modern

Private 

Physicians

Mayetizè

Public 

Supernatural Physicians

Mayetizè

Bokò

Christian

Catholic

Priest Mambo

Priestess

Houngan

Natural

Docktè Fèy

Pikirist

Chalatan

Doktè Zo

Fanm Saj

Herbalist

Bone

setter

Midwife

Dx Illness

Joel Piton, M.D., CCHER

 

Radio outreach Community focus group

Haitian Collaborative Project

 

Client Client Client

TB 

Clinic

TB

Clinic TB

Clinic

Client Client Client

Traditional TB Clinic Model

At 3 Months At 6 Months At 9 Months

Cultural Case Management Model

TB 

Clinic TB

Clinic TB

Clinic

3 home 

visits

6 home

visits 9 home

visits

Phone

24

Phone

48

Phone

72

Primary

care Primary

care

Primary

care

Housing

Housing

Housing

School

School

School

Social

Social

Social

Housing

Trans.

Work

Social Networks
 Stefan Goldberg, M.D. 

 Neighborhood Health Messengers 

64 

Selected Cultural Findings

From Community Mapping

• TB more stigmatizing than AIDS

– Often viewed as a curse or test from God.

• No framework for “latent infection”

– Treatment without symptoms = experimentation.

• Pharmaceuticals are dangerous

– Not natural products

– Pollutants

– Liquid “safer” than pills

– US medicines appropriate for Americans not them.

• Mistrust of American physicians

– Mistrust/insecurity of American systems especially since 9/11

• Health belief system often complex

– Secular, religious, and mystical or supernatural components

 

Selected Cultural Findings

From Community Mapping

• Translated words carry different semantics

– “Negative” versus “Positive” test results.

• PPD reactions are common

– So, in some populations, they are perceived as 

“normal”.

– Or, are a result of childhood immunization with 

BCG.

• Bosnian Story

– Interpreter: “don’t trust what they tell you about TB”

• Russian Story

– Initial interpreter telling the wrong things.

– Repeat BCG and PPD till Positive showing 

protection from TB

Selected Cultural Findings

From System Mapping

• “Treating your TB is very important”...but client can’t get a 

TB clinic appointment for at least another 2 -3 months.

• Clinic visit sometimes disrespectful.

• Recommendations on the treatment of LTBI inconsistent: – 12 v. 6. v. 9 months; eligibility age raised from 29 to 50.

• Fear of becoming a focus of research and publicity – E.g. reporting unfamiliar symptoms (has become a reason for concealing personal health information.)

• Doctors seem more concerned with saving time than serving 

clients; Too busy to spend the time to understand their 

health concerns; Lack patience, compassion and care 

patients expect of them.

• Immigration process misleading: (-) CXR = no TB so: – “Why am I being screened again when I was screened in Somalia?”

– How could I have TB if I was told I didn’t have it when I left Somali?

– (+) PPD = prior BCG

• US health care system too confusing

 

Other Lessons Learned

• Cultures are not monolithic:

– E.g., nearly 40 tribes in the Sudan w/ war-like histories

– Class and SES distinctions

• Immigrants have many other more important 

concerns

– Many do not speak English and “interpreters” may speak on 

behalf of the health care system not client.

– Illiteracy high: graphics needed for communication/education

– Employment: limited marketable skills.

– Misunderstanding/misinterpretation of some our health care 

practices.

• Western male clinicians and immigrant female clients 

unacceptable.

– Erosion of traditional male power and roles.

Replication

• Matapan:

– Community Center for Haitian Education & Research

• San Diego

– Nile Sisters, Horn of Africa, Africa Call 

• District of Columbia

– Mary Center For Women & Children

• Denver

– Sisters of Color For Education

 

• Complete replication, refine documentation & evaluation

• Influence the field through:

Local CCM “experts”; replication tool kit

Dissemination

Presentations at professional meetings 

National Jewish Medical Center TB Course

CDC, national, state, local TB control programs

Publications:

Clinical results (IJTLD 8(1):1-7)

Cost effectiveness analysis

Cultural lessons document

Peer site exchange in May 2003

RESULTS.org

Casey Public Health Fellowship @ CDC

Next Steps
 Stefan Goldberg, M.D. 

 Neighborhood Health Messengers 

65 

Final Thoughts

• Costs:

– Goal is to cross train CCMs and thereby cross fund

– Leverage Medicaid and other funding streams

• Replication

– Focusing on the process not the knowledge

• Focus groups are an effective engagement strategy to 

develop not just knowledge but trust and relationships

– Go beyond a TB program to broader community building 

agenda

• Promote the benefits of this strategy

– Refine asset mapping and replication tool kit

– Develop customized technical assistance pool
66 

PSYCHOSOCIAL, SOCIAL STRUCTURAL, AND ENVIRONMENTAL DETERMINANTS OF 

TUBERCULOSIS CONTROL

Donald E. Morisky, Sc.D., M.S.P.H., Sc.M. 

Professor, Department of Community Health Sciences 

UCLA School of Public Health 

Donald E. Morisky, Sc.D., M.S.P.H., Sc.M.

Professor and Program Director for Social 

and Behavioral Determinants of AIDS and 

Tuberculosis Training 

Department of Community Health Sciences

UCLA School of Public Health

Psychosocial, Social Structural, 

and Environmental Determinants 

of TB Control

 

Typically associated with homelessness, 

drug or alcohol abuse and/or minimal 

educational achievement

Multiple drug resistant TB (MDR-TB)

Cited as the major cause of the increase in

incidence rates of TB

Directly Observed Treatment -- Short 

Course (DOTS)

ËReason for Dots. 

E1 - Educational counseling;

E2 - Incentives/rewards; 

E3 - Combination of E1 and E2;

C - Usual care

Study

Group

R

(Site 1)

(Site 2)

 

A total of 241 patients were randomly 

assigned to one of three intervention groups 

or the control. 

The patients were followed throughout 

their treatment program. Cognitive and 

behavioral outcome markers were used to 

assess the effectiveness of the educational 

intervention. 
Donald Morisky, Sc.D., M.S.P.H., Sc.M. 

Psychosocial, Social Structural, and 

Environmental Determinants of TB Control 

67 

THREE CATEGORIES OF FACTORS CONTRIBUTING TO

COMPLIANCE TO AN ANTI-TUBERCULOSIS REGIMEN

COGNITIVE FACTORS

ENVIRONMENTAL FACTORS

REINFORCING FACTORS

Knowledge

Beliefs

Values

Attitudes

Availability/Accessibility to Care

Travel to Health Facility

Waiting Time

Health Related Skills

Complexity of Medical Regimen

Family

Peers

Employer

Health Care Provider

Health Educator

Compliance to an

anti-tuberculosis

regimen

 

DEMOGRAPHIC

For all eligible participants interviewed (N=241)

Survey Item Distribution

Male 63%

Ethnicity

- Hispanic

- Black

62%

25%

Spanish-speaking 60%

Unemployed 63%

Education < High School graduate 55%

Annual Family Income < $10,000 42%

LENGTH OF CARE FOR PARTICIPANTS

IN PROGRAM

39.66

32.27

37.13

31.96

0.00

5.00

10.00

15.00

20.00

25.00

30.00

35.00

40.00

Control Education Incentives Combined

Average

Weeks

Weeks

Intervention Group ANOVA : p =0.03

(n=61) (n=60) (n=60) (n=60)

 

INTERVENTION EFFECTS BETWEEN 

BASELINE INTERVIEW AND EXIT INTERVIEW 

Intervention Group Percentage Difference p - value

C - Control

E1 - Education

E2 - Incentives

E3 - Combined

.860

.009**

.059

.046*

Knowledge Scale

+ 1.5%

+ 31.7%

+ 20.5%

+ 26.7%

Medication Compliance

C - Control

E1 - Education

E2 - Incentives

E3 - Combined

(Post-test vs Pre-test)

+ 9.7%

+ 26.5%

+ 14.1%

+ 16.7%

(Paired t-test)

.47

.006**

.067

.061

* : p < 0.05; ** p < 0.01

$2,680.1

$1,647.5 $1,770.7

$2,070.8

$0.0

$500.0

$1,000.0

$1,500.0

$2,000.0

$2,500.0

$3,000.0

Control Education Incentives Combined

Total Cost

(Dollars)

Dollars

Intervention Group

(n=60) (n=61) (n=60) (n=60)

COST PER COMPLETED CASE

ANOVA : p =0.04

 

84.30%

89.70%

81.00%

82.00%

83.00%

84.00%

85.00%

86.00%

87.00%

88.00%

89.00%

90.00%

Control All Interventions

APPOINTMENT-KEEPING BEHAVIOR FOR 

PARTICIPANTS

p =.04
Donald Morisky, Sc.D., M.S.P.H., Sc.M. 

Psychosocial, Social Structural, and 

Environmental Determinants of TB Control 

68 

38.4

32.9

30.0

31.0

32.0

33.0

34.0

35.0

36.0

37.0

38.0

39.0

Control All Interventions

AVERAGE WEEKS OF TREATMENT UNTIL 

COMPLETION OF CARE

p 

=.044 

Factors to consider for drop out rates

Ethnic Background

Sex

Unemployment

Homeless

Drug Use

HIV

Primary Language

Marital Status

 

Why Focus on Adolescents ?

• Incidence of TB increases at adolescence1

• Adolescents more susceptible to active TB2

• Time interval between infection and 

development of active disease is shorter3

• Adherence among adolescents

1. Starke, JR. Infectious diseases of health significance among children and adolescents in Texas. Texas Med 90:35-45, 1994.

2.Wilcox WD, Laufer S. Tuberculosis in Adolescents. A Case Commentary. Clinical Pediatrics,1994; 33:258-262. 

Smith MHD. Tuberculosis in adolescents. Clinical Pediatrics, 1967; 6:9-15.

3 McCue M, Afifi LA. Using peer helpers for tuberculosis prevention. J Am College Health 1996 Jan, 44(4):173-6.

Background of TB Study

• Rationale: Preventive TB treatment study

• Sites:Long Beach and Inglewood Public Health 

Clinics

• Participants: Ethnically diverse adolescents aged 

11-19 years old (n=794)

• Randomized in 4 treatment groups (peer 

counseling only, incentive only, combination of 

peer counseling and incentive, usual care)

• Procedure-Face to face interviews, baseline and 

6 month follow-up

• The present report only includes foreign-born 

adolescents (80% of study population)

 

Independent Variables

• Socio-demographic variables

• Clinic related variables (e.g. waiting time)

• High-risk behaviors (alcohol, drug use, 

gang membership, incarceration)

• Psycho-social variables (self-esteem, 

mastery, self-efficacy)
Donald Morisky, Sc.D., M.S.P.H., Sc.M. 

Psychosocial, Social Structural, and 

Environmental Determinants of TB Control 

69 

Recruitment

Baseline Interview

and

Randomization

(n=880)

Peer Counseling

(n=220)

Final

Interview

Contingency 

Contracting

(n=220)

Combined Peer and

Parent Intervention

(n=220)

Usual Care

(n=220)

Model of Study Group Design - Intervention Experimental Design

Follow to

Treatment 

Completion

or Drop-out

 

Quasi-Experimental/Control Design Study for 

Adolescent Participants at Baseline Surveys

Recruitment

Baseline Interview

and

Randomization

(Baseline N=390)

(Los Angeles : n=191;

Long Beach : n=199)

E1

E2

E3

C

Peer Counseling

(Baseline n=94)

Contingency Contracting

(Baseline n=100)

Peer Counseling and 

Contingency Contracting

(Baseline n=96)

Standard Care (Control)

Recruitment : July 1996 - (Baseline n=100)

October 1997

Theoretical Conceptual Framework

Knowledge

Attitudes

Beliefs

Self Efficacy

Behavioral Intention

Subjective norms

Increased

Compliance

Tuberculosis

Prevention

 

Characteristics of 

Foreign-born Adolescents

• 20% failed to complete treatment

• 45% live with both parents

• 78% rate their health as good

• 2% are gang members

• 23% are sexually active

• 8% report a history of incarceration

Factors Associated with 

Completion of Care

• Age (OR=0.85; 95% CI: .76-.85)

• Asian ethnicity (OR=3.37; 95% CI .99-.11.44)

• Living with both parents (OR=2.13; 95% CI: 

1.37-3.31)

• Speaking only English with parents (OR=0.34; 

95% CI: .16-.74)

• Sexually active (OR=0.43; 95% CI: .28-.68)

• Gang member (OR=0.26; 95% CI: .07-.87)

• Incarceration (OR=0.50; 95% CI: .26-.94)

• Medication taking behavior (OR=1.25; 95% CI: 

1.14-1.37)

 

Independent Predictors of 

Completion of Care 

• Medication taking behavior (OR=1.28; 

95% CI:1.16-1.41)

• Living with both parents (OR=1.87; 95% 

CI:1.08-3.25)

• Sexual intercourse (OR=0.54; 95% CI-

.31-.94)

• Speaking mostly or only English with 

parents (OR=.34; 95% CI .12-.91)
Donald Morisky, Sc.D., M.S.P.H., Sc.M. 

Psychosocial, Social Structural, and 

Environmental Determinants of TB Control 

70 

Recommendations

• Need to collect more specific information

• Encourage clinic procedures that 

increase compliance 

• Recruit supportive family members 

/friends to facilitate treatment

• Future research should focus on foreignborn adolescent populations in various 

regions of the US

 

Individual Determinants of 

Compliance

• Understanding the medical regimen

• Belief in the benefits of treatment

• Positive attitudes regarding treatment

• High levels of self esteem and self efficacy

Environmental Determinants of 

Compliance

• Family member reinforcement in the home

• Good patient/provider communication

• Systematic approaches for patient 

monitoring, follow up and reinforcement

• Convenience of picking up medication from 

the clinic

• Use of pill containers and cueing behaviors 

 

Individual/Environmental 

Determinants of Completion of 

Care

• Regular appointment-keeping behavior

• High levels of adherence 

• Community health workers

• Reinforcement of positive behaviors by 

health care staff

• Peer counselors to clarify health concerns
71 

SHARPENING THE FOCUS ON TURNING RESEARCH INTO PRACTICE: THE PROMISE OF 

PARTICIPATORY RESEARCH APPROACHES

Shawna Mercer, M.Sc., Ph.D. 

Health Scientist, 

Public Health Practice Program Office, Office of the Director 

Centers for Disease Control and Prevention 

 

Sharpening the Focus on Turning 

Research into Practice: The 

Promise of Participatory 

Research Approaches

Shawna L. Mercer, PhD, MSc

Office of Science and Extramural Research

Public Health Practice Program Office

Centers for Disease Control & Prevention

Bottleneck in Translating Public 

Health Research into Practice

• There is insufficient recognition of the 

complexities inherent in putting public 

health research findings into practice 

across diverse communities, settings, 

and situations 

4 To be relevant for practice, research must 

meet diverse practice needs

 

Challenges for Taking 

Research Results to Practice

1. Internal vs. external validity 

(generalizability):

4 Internal: 

 Are we measuring what we purport to measure?

4 External:

 How applicable is this to real-world rural 

settings and situations?
Shawna Mercer, M.Sc., Ph.D. 

Sharpening the Focus on 

Turning Research into Practice 

72 

Challenges for Taking 

Research Results to Practice

2. Best practices vs. locally appropriate 

and affordable practices

4 For special populations

 e.g., minority populations in rural areas

4 In underserved areas

4 For those of lower socioeconomic status, lower 

education

4 Behavioral vs. medical interventions

 

Best Practice Application Gaps

• Accessibility gap 

4Do I have the same resources as the 

experimenters?

• Credibility gap 

4How different is their situation of practice 

from mine?

• Expectations gap 

4Is it really necessary for me to strive for 

such lofty goals in my practice?

» Lancaster B. Closing the gap between research 

and practice. Health Educ Q 1992;19:408-411

A Solution for Taking 

Research Results to Practice 

)An upstream approach 

4By actively engaging practitioners, policy 

makers, community members in the 

research process, it is more likely the results 

will be relevant to their needs

 

Participatory Research is...

• “Systematic inquiry

• With the collaboration of those affected by 

the issue being studied

• For the purposes of education and taking 

action or effecting social change”

Green, et al., 1995 

Study of Participatory Research in Health Promotion. 

What is Participatory Research?

• It is not a method

• It is an approach

4Involves engaging potential users and 

beneficiaries of the research in the research 

process

4A wide range of study designs and research 

methods can be used

 Selection depends on the research questions and 

feasibility issues

 

Whose Participation 

Should be Sought?

• Who is to be affected by the research 

results? 

4Geographic communities

4Other groups sharing common characteristics 

 Ethnic groups, practitioners, policy makers, health 

departments

 Minority or special populations living in rural 

settings
Shawna Mercer, M.Sc., Ph.D. 

Sharpening the Focus on 

Turning Research into Practice 

73 

“Mom, Dad’s been doing participatory research again.” 

How Much Participation is 

Needed? • At a minimum:

4helping to formulate research questions 

4 interpreting and applying the research 

findings

• Possibly also:

4Selecting and using methods 

4Analyzing data

• Rule of thumb:

4Dependent on complexity and laborintensiveness of methods and analyses

Considerations in Developing 

OSER’s Extramural Prevention 

Research Grant Program (EPRP)

• Tenets of participatory research:

4Grass-roots initiative

4Local control and autonomy 

• What are the implications for funding, 

supporting, judging (not threatening or 

undermining) participatory research?

 

Needs and Preferences of 

Researchers and Practitioners

• A vision for participatory research

• Adequate time for true participation

• Investigator-initiated research

• External peer-review 

• Infrastructure capacity, methodology, 

and other cross-cutting issues

• Multiple levels of intervention 

• Take research results to scale and 

sustain effects

OSER Grant Funding FY2003-

2005: Community-Based 

Participatory Prevention Research

• To stimulate investigator-initiated 

participatory research on communitybased approaches to prevention

4Multi-disciplinary

4Multi-level research

4Community

4Cross-cutting

 Caveat: guided by community needs

 

1

29

5 5

1

7

0

5

7 3

2

36 6

0

2

5

8

2

9

2

7

14

5

4

5

6 8 1

11

1

9

20

16

18

19

2

34

15

13

11

1 2

Community-Based Participatory Prevention 

Research Grants: LOIs Submitted from Each 

State (N = 435)

MA: 28

RI: 1

CT: 5

NJ: 6

DE: 2

MD: 13

DC: 14

Alaska, Hawaii and Puerto Rico are not to scale.

AK : 2 HI: 2 PR: 5
Shawna Mercer, M.Sc., Ph.D. 

Sharpening the Focus on 

Turning Research into Practice 

74 

EPRP’s Second Round of Grants: 

Response and Funding

• Response:

4570 letters of intent (LOI)

4311 full applications

• Funding:

440+ projects approved for funding

4~$11.4 million

4~25 projects funded

4Each project: ~$450,000 per year for 3 years

 

Range of Projects Funded

• Cross-cutting research such as:

4Diabetes, asthma, obesity 

4physical activity, nutrition, tobacco 

prevention, drug prevention, violence/injury 

prevention

4youth and school-based health 

4workforce development 

4reduction of health disparities 

4Increasing access to care 

Diabetes in Hispanic Appalachians

• Issue:

4Growing numbers of Hispanics moving into rural Appalachia 

(migrant and permanent)

4High levels of diabetes; low access to care

• Research team:

4East Tennessee State University Researchers

4Hispanic community and provider partners

• Site:

4Southern Appalachia

• Intervention:

4Development of tailored interventions to enhance detection, 

management, and prevention of diabetes

4Education to increase the capacity of Hispanic community to 

identify and solve its other health problems

 

References

• Green LW & Mercer SL. Can public health 

researchers and agencies reconcile the push 

from funding bodies and the pull from 

communities? American Journal of Public 

Health. 2001;91:1926-1929.

• Minkler M & Wallerstein N (Eds.). 

Community-Based Participatory Research for 

Health. San Francisco: Jossey-Bass, 2003.
75 

REPLICATING EFFECTIVE PROGRAMS: TURNING RESEARCH INTO PRACTICE

Agatha Eke, Ph.D. 

Behavioral Scientist, 

Division of HIV/AIDS Prevention, 

Centers for Disease Control and Prevention 

Replicating Effective Programs:

Turning Research Into Practice

Agatha N. Eke, PhD

Centers for Disease Control and Prevention (CDC)

Atlanta, Georgia, USA

 

Institute of Medicine Report

The IOM Report on HIV prevention 

recommended: 

Key DHHS agencies that fund HIV 

prevention research and interventions 

should invest in strengthening locallevel capacity to develop, evaluate, 

implement, and support effective 

programs in the community.

HIV Prevention Strategic Plan

By 2005, strengthen the capacity 

nationwide to monitor the epidemic, 

develop and implement effective HIV 

prevention interventions and evaluate 

prevention programs.

Goal Four

 

Goals

• HIV prevention agencies should conduct 

interventions that are science-based.

• Research-based HIV prevention behavioral 

interventions should be made available for 

use by prevention agencies.
Agatha Eke, Ph.D. 

Replicating Effective Programs 

76 

Experience

Our experience in the Centers for Disease 

Control and Prevention’s (CDC) Replicating 

Effective Programs (REP) project has 

taught us valuable lessons on what 

researchers & prevention agencies need to 

do to achieve these goals.

 

A New Model of Behavioral Research

• Old Model = Research project ends with publication 

of articles that present research findings

• The research community has a responsibility to 

translate and transfer the fruits of research in ways 

that are useful to society [A shift in paradigm].

• New Model = Active partnership among researchers, 

prevention agencies, & communities at all stages of 

research & transfer into practice

The REP Project: Part of the New Model

• Started in 1996 as a 2-year project

• US$400,000 for each effective, research-based 

intervention

• Converts interventions into packages (kits) for use 

by local HIV prevention agencies

• Funds researchers to collaborate with community 

advisors to prepare the intervention packages

• Other prevention agency collaborators conduct 

trials/case studies of implementing the intervention 

using the packages, training, & TA

 

The REP Project: Continued

• So far, REP has:

– converted 7 interventions into packages

– 3 packages in formal preparation

– 1 package in informal preparation (CITY)

REP Criteria to Determine An 

Intervention’s Effectiveness

• Completed research study

• Measured behavioral or biologic outcomes

• Collected pre- and post-test data

• Used treatment & control/comparison groups

• Retained ≥ 70% of participants

• Evaluated using quantitative statistics

• Found to have statistically significant positive 

effects

 

Translation and Transfer Steps for 

Researchers

Year 1 of REP

• Form advisory committee of HIV prevention 

providers and community members

• Translate science into lay language

• Develop package contents & format with 

advisory committee

• Find other HIV prevention agencies to field test 

package
Agatha Eke, Ph.D. 

Replicating Effective Programs 

77 

Translation and Transfer Steps for 

Researchers (cont’)

Year 2 of REP

• Orient agency to intervention and collaboratively 

tailor & adapt it

• Train agency staff in technical skills & 

intervention delivery

• Provide technical assistance on implementation 

and problem-solving

• Evaluate the process & debrief the agency staff

• Refine package based on agency input & 

produce final version

 

Transfer and Implementation Phases for 

HIV Prevention Agencies

Pre-Implementation Phase

• Obtain administrative, agency staff, & 

community buy-in

• Line up resources & designate responsibilities

• Orient gatekeepers

• Get training for staff who will conduct the 

intervention

Transfer and Implementation Phases for 

HIV Prevention Agencies (cont’)

Implementation Phase

• Tailor delivery to agency & local circumstances

• Adapt intervention for population & setting

• Schedule start-up steps

• Assure quality of delivery & fidelity to Core 

Elements

• Obtain technical assistance

 

Transfer and Implementation Phases for 

HIV Prevention Agencies (cont’)

Maintenance Phase

• Dedicate sufficient resources

• Institutionalize as part of agency’s mission

• Re-adapt to changing circumstances

• Obtain gatekeepers’ acceptance of intervention 

modifications

Lessons for Converting Research into 

Prevention Practice

• Keep detailed, accessible records of interventions

• Identify “core elements” of interventions to 

simplify implementation by prevention agencies

• Researchers should work with prevention 

agencies in converting research into practice

• Develop simple, clear packages of “How to” 

materials designed for prevention agencies

• Shorter & simpler interventions are easier to 

implement

 

Records of intervention

• Intervention’s design & protocol

• Copies of original posters, brochures, videos, 

& other materials

• Details of procedures & logistics

• Costs of intervention separate from costs of 

research
Agatha Eke, Ph.D. 

Replicating Effective Programs 

78 

Identify “core elements” of 

intervention

• Critical features of an intervention’s intent & 

design

• Thought to be responsible for an intervention’s 

effectiveness

• Identified by operationalization of the underlying 

theory & experience in using the intervention

 

Researcher and prevention agency 

collaboration

• Have researchers, agencies, and communities 

design & test packages together

• Adapt interventions to agency resources, 

community needs, & local priorities

• Provide training & technical assistance along 

with packaged intervention protocols

• Collaborate until agency is comfortable with 

the intervention

Packages of “How to” materials

Protocol manual

»Sufficient detail but concise

»Non-technical language

»Clearly written

»Practical

»Appealing & easy to use

Sample posters, brochures, videos, and 

other materials

 

Short and simple interventions

• Few components

• Brief

• Easy delivery skills

• Simple technology

• No monetary incentives

New Model = Active partnership among researchers, 

prevention agencies, and communities at all stages 

of research and transfer into practice

If this perspective is accepted as the model for 

putting science-based interventions into 

practice,

• Researchers should design interventions that 

can be conducted by prevention agencies

• Researchers need to plan ahead for the 

transfer process during their research studies

• Funders need to pay for all stages of the 

research, transfer, and implementation 

process

 

Conclusions

• REP is a part of a new model for researchers & 

funders.

• Transfer is complex and expensive but possible.

• Transfer requires alliance between researchers & 

prevention agencies.

• Infrastructure & support for conversion, 

dissemination, & implementation are needed.

• Challenges will be compounded when transfer 

becomes nationwide.

• Challenges of wide-scale transfer of effective 

behavioral interventions must be met to impact 

the AIDS epidemic.
Agatha Eke, Ph.D. 

Replicating Effective Programs 

79 

For more information

Visit the Replicating Effective Programs plus 

(REP+) website at:

www.cdc.gov/hiv/projects/rep/default.htm

Consult CDC’s special journal supplement on 

technology transfer:

Turning HIV Prevention Research Into Practice, 

AIDS Education and Prevention, 12, 

Supplement A, 2000
80 

DIFFUSION OF EFFECTIVE BEHAVIORAL INTERVENTIONS

Agatha Eke, Ph.D. 

Behavioral Scientist, 

Division of HIV/AIDS Prevention, 

Centers for Disease Control and Prevention 

Diffusion of Effective 

Behavioral Interventions 

(DEBI)

Capacity Building Branch

Division of HIV/AIDS Prevention

CDC

 

Handoff Between Research (PRB) 

and Practice (CBB)

SYNTHESIS REP DEBI

FAST TRACK

Goal of Diffusion of Effective Behavioral 

Interventions (DEBI) Project

To develop and coordinate a nationallevel strategy to provide high quality 

training, technical assistance, and 

other capacity building activities to 

diffuse science-based HIV 

interventions to state- and 

community-level HIV programs.

 

Diffusion of Effective Behavioral Interventions:

A Nine-Step Process

1 Planning: system level; individual intervention level

2 Needs assessments and Customer Profiling

3 Marketing and Satellite Broadcast

4 Intervention program package design

5 Training curricula/TA guide development

6 Training trainers, coaches, providers

7 TA to CBOs and HDs implementing programs

8 Evaluate process and outcomes

9 Refine diffusion strategy based on lessons learned
Agatha Eke, Ph.D. 

Diffusion of Effective 

Behavioral Interventions 

81 

DEBI Three Phases

Planning Phase (12-months): design/pilot/ 

conduct interest/needs assessment; produce 

pkg. copies; design/pilot evaluation tools; 

build partnerships; plan marketing & diffusion 

strategy; develop/pilot TOT/TOC, TOF guide, 

& TA Guide 

Implementation Phase (3-months): train 

master trainers & coaches (“Training Institute”)

Roll-Out Phase (24-months): train 700 

agency facilitators, provide TA, evaluate 

process, monitor outcomes

 

Training Components

Curricula design to teach prevention providers 

the methods to implement the intervention.

Intervention institutes to teach trainers how to 

train direct prevention service providers.

Regional, state-wide, and local intervention 

trainings to widely diffuse the intervention 

technology to direct prevention service 

providers.

Intervention Training Curricula

Approved by original researchers 

Highly explicit, detailed guidance

Based on Adult Learning Principles

Appropriate for as a TOT or direct 

provider curriculum

Piloted/revised prior to major roll-out.

 

Intervention Institutes

Train the Trainer/Coach

Researcher involvement

Intensive skill-building around the 

intervention

Develops trainer/coach partnerships

Develops training/coaching 

implementation plans

Regional, state-wide, and local 

intervention trainings

Coordinated by AED

Provided by training teams

Intervention manuals and 

other intervention materials will 

be distributed

 

Training Partners

CBB Training Team

Prevention Training Centers 

Education Training Network

CBA Trainers
Agatha Eke, Ph.D. 

Diffusion of Effective 

Behavioral Interventions 

82 

Family of Coaches

CBA Priority Area 2 Providers

BSSV

CBB Science Application Team

Health Department capacity 

building providers

 

Coaching

Coaching is on-site, phone, or e-mail 

technical consultation by a mentor or rolemodel technical assistance or capacity 

building provider

Other supports for diffusing 

effective interventions

Satellite Broadcasts

Chat rooms or list serve

Newsletters

Follow-up conference calls

Distribution of package updates

Conference affinity session for current 

users of an intervention package

 

2002: Started Blending REP & 

DEBI

In REP’s Year 1, DEBI:

– Helps REP PIs with their TOF curriculum

– Provides TA Guide template

– Develops a TOT/TOC curriculum

– Starts planning diffusion strategy with REP PI

In REP’s Year 2, DEBI:

– Observes facilitator training

– Trains trainers & coaches

– Has coaches observe REP implementation

– Makes plans for package production

Lessons Learned

In order to move research to practice, 

an active partnership is needed at all 

stages among communities, 

researchers, prevention agencies and 

diffusion agents.

Need to strengthen communication 

between communities, applied 

scientists, researchers, and all 

partners. 

Lessons Learned

Diffusion is a multidisciplinary effort 

that includes people with shared 

vision: peers, frontline staff, 

community/agency change agents, 

curriculum writers, trainers, TA 

providers, researchers, and agency 

administrators. 
Agatha Eke, Ph.D. 

Diffusion of Effective 

Behavioral Interventions 

83 

Lessons Learned

Understanding more about the 

relationship between agency capacity 

and implementing with fidelity will 

improve diffusion efforts. 

What researchers identify as an 

“effective intervention” be not be 

perceived as “effective” by the 

community. 

 

Lessons Learned

Everybody wants to “adapt” 

interventions to make them their own. 

Adaptation and tailoring are 

absolutely critical to maintaining the 

efficacy of the intervention.

“Playing” with or implementing part of 

an intervention may build conceptual 

utility and lead to adoption.

Lessons Learned

Successful diffusion involves overcoming 

many myths such as:

– CBOs don’t want or can not handle 

science based interventions. 

– Researchers and communities do not 

work well together

– Interventions can not be changed or 

updated

– Interventions are meant to replace the 

current work of communities

 

For more information

Visit the Disseminating Effective Behavioral 

Interventions (DEBI) website at:

http://www.effectiveinterventions.org
84 

EFFECTIVE INTERVENTION FOR ASTHMA

Leslie Boss, M.P.H., Ph.D. 

Epidemiologist, 

National Center for Environmental Health, 

Centers for Disease Control and Prevention 

Effective Interventions 

for Asthma

Leslie P. Boss, MPH, PhD

Air Pollution and Respiratory Health Branch

National Center for Environmental Health

CDC

lboss@cdc.gov

 

Objective

• Share our approach to:

• Increasing availability of effective community 

interventions for asthma

• Know what interventions existed 

• Know the result of asthma intervention 

research activities from the past

• Know what intervention research is currently 

ongoing

• Identify intervention gaps

Asthma

• Roughly one in 17 Americans have asthma

• Traditionally addressed clinically

• Complex disease, challenging to diagnosis 

and treat

• Under diagnosed and under treated

• Behavior change needed

– People with asthma

– Parents of children with asthma

– Medical care providers

• Complex interventions

 

Implementing Effective 

Interventions

• Such interventions have to exist

• Need to know about them

• Must be appropriate for the population in 

need of intervention

• Need to have access to the documented 

procedures and materials

• Need to have staff with necessary 

competencies for implementation or provide 

training needed to meet the competencies
 Leslie Boss, M.P.H., Ph.D. 

Effective Intervention 

for Asthma 

85 

Intervention 

research

Identification of 

effective interventions

Translation

Widespread 

community

implementation

Identification of 

Intervention gaps

Defining needed

research

 

Widespread Implementation

• Rooted in the 

community

• Science-based

• Implemented as part of 

a comprehensive and 

integrated program

Intervention 

research

Identification of 

effectiveinterventions

Translation

Widespread 

community

implementation

Identification of 

Intervention gaps

Defining needed

research

Stakeholder

input

Intervention gaps?

Are there populations in 

need of intervention for 

whom there appear to be 

no effective interventions?

If yes, is there already an 

effort underway to fill that 

gap?

Intervention 

research

Identification of 

effectiveinterventions

Translation

Widespread 

community

implementation

Identification of 

Intervention gaps

Defining needed

research

Stakeholder

input

 

Is Additional Intervention 

Research Needed?

• What interventions 

already exist?

• What intervention 

research is currently 

underway? 

• Does that research have 

the potential to provide 

interventions for 

populations in need?

Intervention 

research

Identification of 

effective interventions

Translation

Widespread 

community

implementation

Identification of 

Intervention gaps

Defining needed

research

Stakeholder

input

Intervention Research

• Often funded by outside 

organization, usually 

NIH

• Positive health outcome

• Dissemination of results

• Research designed with 

translation in mind?

Intervention 

research

Identification of 

effectiveinterventions

Translation

Widespread 

community

implementation

Identification of 

Intervention gaps

Defining needed

research

Stakeholder

input

 

Identification of Effective 

Interventions

• Identified criteria for 

labeling interventions 

as effective

• 193 publications 

reviewed

• Initially 16 interventions 

identified as effective; 

now 43.

• Initially 2 of 16 ready to 

implement; now 5.

Intervention 

research

Identification of 

effectiveinterventions

Translation

Widespread 

community

implementation

Identification of 

Intervention gaps

Defining needed

research

Stakeholder

input
 Leslie Boss, M.P.H., Ph.D. 

Effective Intervention 

for Asthma 

86 

Translation

• Removes research 

elements;

• Modifies the protocol 

based on research 

findings;

• Updates materials;

• Develops components as 

needed;

• Assures that revised 

procedures and materials 

are widely available.

Intervention 

research

Identification of 

effectiveinterventions

Translation

Widespread 

community

implementation

Identification of 

Intervention gaps

Defining needed

research

Stakeholder

input

 

Translated Interventions

Wee 

Wheezers

at Home

Home

Power 

Breathing

Open Airways

(RAP)

School

Medical 

Home

ALA 

project

ACT for Kids

(NCICAS)

Wee 

Wheezers

Clinic/ED/

hospital

Young Teens Adults Providers

school

PreschoolIntervention 

site

Sharing the Information

• Internet

– Summary of publications of 

effective intervention 

research

– Accessing intervention 

packages

– Case studies

– Bibliography

• Searchable database

– Ongoing intervention 

research

• E-mail, conferences, 

publications, etc.

Intervention 

research

Identification of 

effectiveinterventions

Translation

Widespread 

community

implementation

Identification of 

Intervention gaps

Defining needed

research

Stakeholder

input

 

www.cdc.gov/nceh/airpollution/asthma/

interventions/interventions.htm

(or go to www.cdc.gov/asthma, 

And follow the trail to ‘Interventions”)
87 

POTENTIAL FUNDING OPPORTUNITIES 

Kathryn O’Toole, M.B.A. 

Associate Director of Management and Operations, 

Division of Tuberculosis Elimination, 

Centers for Disease Control and Prevention 

DTBE Appropriation and Funding

Kate O’Toole, MBA

Associate Director for Management 

and Operations

 

FY2003 Congressional Appropriation 

to CDC for Tuberculosis

• FY2003 Appropriation = $136,514,000 

(includes S&E)

• Earmark = $125,000 in PHPPO’s budget

FY2003 Gross-to-Net CDC Funding

125,000,000

127,000,000

129,000,000

131,000,000

133,000,000

135,000,000

137,000,000

139,000,000

Appropriation (including S&E)

Rescission ($887,341)

Indirect ($7,159,327)

1x tap for GAP ($270,000)

To other divisions ($19,870)

NCHSTP overhead ($2,776,112)

Adjust for GAP overhead $62,633

HIV $10,728,670

Onondaga after taps $119,573

 

USAID Funding to DTBE

• USAID total funding = $2,551,246

• Overhead tap (15%) = $ 382,687

• Balance = $2,168,559
Kathryn O’Toole, M.B.A. 

Potential Funding 

Opportunities 

88 

Discretionary Funding to DTBE

TB

USAID

HIV

Project Concept Solicitation: April 

1, 2003

• DTBE solicited research concepts from CDC, 

TBESC, and TBTC investigators. 

• A standardized “project concept form” was used. 

• For CDC staff, all funding proposals (research and 

other) were submitted, but only research proposals 

were forwarded to the CDC/TBESC research 

concept reviewers.

Determination of Appropriateness 

for TBESC: Early April 2003

• TBESC Research Chair and the DTBE 

Associate Director for Science (ADS) 

determined if a appropriate for TBESC. 

 

TBESC RC Review of Project 

Concepts: April 10, 2003

• Before and at the TBESC semi-annual meeting, the 

RC reviewed the research concepts that were 

considered appropriate for TBESC. 

• Prioritized each project concept by giving it a score 

of high, medium, or low. 

• TBESC and CDC investigators whose concepts 

were ranked high or medium were allowed to revise 

and resubmit their project concepts incorporating 

the RC’s comments/recommendations.

TB Leads review of project 

concepts: Early May

• The DTBE Senior Staff independently reviewed the 

project concepts using the same ranking system as 

the RC: low, medium and high with 

comments/recommendations. 

• They ranked concepts based on the merit of the 

concept to the Division and its mission, and the 

comprehensiveness of collaboration.

 

Joint TBESC RC/DTBE TB Leads 

meeting: May 12, 2003

• The joint TBESC RC/DTBE TB Leads group met in Atlanta 

to discuss the TBESC RC/TB Leads report.

• The final report to the TBESC and CDC investigators 

included the summary ranking of the TBESC RC and TB 

Leads group (including discrepant results) and 

recommendations to the PIs from each group. 

• Investigators whose concepts were ranked high by both 

groups were encouraged to develop their concepts into full 

TB Leads proposals. 

• A number of investigators whose proposals were ranked 

high and medium were also encouraged to develop their 

concepts into full proposals.
Kathryn O’Toole, M.B.A. 

Potential Funding 

Opportunities 

89 

Submission of TB Leads 

proposals: October 1, 2003

• TBESC and CDC investigators and their 

collaborators developed and submitted 

proposals. 

• Only investigators who submitted project 

concepts were allowed to submit TB Leads 

proposals.

 

TB Leads Evaluation: October 14, 

2003

• The proposals were reviewed by the DTBE TB 

Leads group and ranked. This included both 

research proposals and non-research related 

proposals that did not go through the TBESC review 

process. Final funding decisions will be made when 

the congressional budget for TB is available but no 

projects are expected to be funded in FY2004.

FY2005

• Similar process

• Later initial deadlines

• Earlier decisions
90 

MAINTAINING THE MOMENTUM: RECAP AND NEXT STEPS

Nick DeLuca, M.A. 

Lead Health Education Specialist, 

Division of TB Elimination, 

Centers for Disease Control and Prevention 

Next Steps Proceedings

• Entertain additional input on further research 

needs (e.g. via list-serv, email, etc.)

• CDC Team will synthesize ideas 

• Share and solicit input on initial draft

• Finalize

 

Next Steps for Agenda

• Forum results

• Literature review

• Workgroups

Acknowledgements

External Steering Committee

• Patrick Chaulk 

• Paul Colson

• Ana Lopez-Defede 

• Don Morisky 

• Mark Nichter 

• Jessica Ogden 

• Charles Wallace

TB Program Staff

• Beverly DeVoe (GA Department of Human Resources)

• Francine Greiner (DeKalb County Health Department, GA)

 

Acknowledgements

Contractors

• Abt Associates

–Ted Hammett

–Cristina Booker

–Brandon Long

•Institute of Cultural Affairs

–Martha Talbot

Acknowledgements

• Rachel Albalak

• Gaby Benenson

• Warren Benson

• Regina Bess

• Betsy Carter

• Ken Castro

• Hsin-Hsin Foo

• Maria Fraire

• Sherry Hussain

• Brenda Holmes

• Teresa Goss

• Harold Jaffe

• Heather Joseph

• Elizabeth Kalayil

• Amera Khan

• Scott McCoy

• Kate O’Toole

• Paul Poppe 

• Wanda Walton

CDC/National Center for HIV, STD, and TB Prevention Colleagues
91 

Appendix C: TB Behavioral and Social Science Research Gaps and 

Needs: Major Research Topics, Subtopics, and Research Questions 

Overview 

The following section provides a listing of the major TB behavioral and social science research 

topics, subtopics, and specific research questions generated by the Forum participants. For each 

topic and subtopic, a brief description is given, followed by an italicized paragraph(s) 

summarizing the general research concepts that were elicited by Forum participants; (a 

condensed list describing only the major research topics and subtopics can be found on p. 31-43). 

Under each topic and subtopic, the specific questions generated by Forum participants have been 

roughly organized in order from simplest research design (such as questions that would lead to 

descriptive or exploratory research) to most complex and most detailed (such as those which 

might lead to experimental or intervention research). Because issues can be multi-dimensional 

focusing on different levels and behaviors, some research questions were placed under more than 

one major research topic and subtopic. 

In addition to research questions, participants also suggested methodologies that could be used to 

address the research gaps and needs. Suggestions included greater utilization of behavior change 

models and theories as a basis for conducting behavioral and social science research; conducting 

needs assessments with a focus on patient-centered approaches; and moving from descriptive, 

exploratory research to developing and implementing interventions and utilizing evaluation 

methods to assess intervention effectiveness and efficiency. Research questions that pose 

methodological points of inquiry are generally grouped together towards the end of each section. 

All questions were recorded verbatim from the flip chart notes and overhead slides collected at 

the Forum. Every attempt was made to preserve the original intended meaning and context of 

the research gaps identified by Forum participants during the discussions. Several questions that 

were either difficult to understand, did not fit under a specific category, or did not focus on 

behavioral or social science research were extracted from the list. 
92 

Major Research Topics, Subtopics, and Research Questions 

I. Background 

A. Health disparities 

Vast disparities exist in TB case rates, treatment outcomes, and TB mortality among 

many different population strata. Historically, these disparities have often been based 

on socioeconomic status and within racial and ethnic minorities, the incarcerated, 

substance abusers, and homeless populations--populations especially vulnerable to 

poorer TB outcomes. In 2002, TB case rates among non-Hispanic blacks continued to 

be eight times greater than non-Hispanic whites.1 In addition, the past decade has seen 

disparities emerge between U.S-born and foreign-born populations in the United 

States. Identifying and eliminating disparities in TB case rates, as well as determining 

effective measures to reduce existing disparities, are important steps toward 

controlling and eventually eliminating TB. 

During the breakout sessions, Forum participants identified the need to better understand 

and address disparities in TB case rates and treatment outcomes. 

 What types of research on disparities in TB should be conducted at the community 

level? Why do the disparities exist, and what can be done to reduce them? 

II. Intrapersonal 

Intrapersonal influences on behavior such as knowledge, attitudes, and perceptions, 

patient satisfaction, and social stigma affect the individual behavior of patients 

including health seeking behaviors and adherence to treatment. This level also 

addresses individual-level issues that may affect providers’ behaviors, such as 

adherence to guidelines and recommendations.

A. Patients’ knowledge, attitudes, and perceptions (KAP) 

An individual’s knowledge, attitudes, and perceptions with respect to health in general 

and with a specific illness, such as TB, influence his/her behavior. Specifically, these 

factors can influence health seeking, understanding of the diagnosis, understanding of 

treatment, treatment initiation, treatment adherence, and general interactions with 

health care providers. 

Forum participants identified the importance of further understanding patients’ 

knowledge, attitudes, and perceptions with respect to TB, with a particular focus on latent 

tuberculosis infection (LTBI). The need to identify any differences in these factors 

among different ethnic and cultural groups, specifically Latinos and other foreign-born 

populations, was emphasized. Finally, participants called for the further use of health 

behavior models and theories to be used as frameworks to better understand the factors 

that influence knowledge, attitudes, beliefs and practices of TB patients. 

 How well do patients understand LTBI and TB disease? Is knowledge associated with 

adherence? 

 What are the KAP of TB in Latino immigrants? 
93 

 What is the explanatory model of TB in Latino immigrants? (Including beliefs about 

health and sources of illness from Kleinman) 

 What are the health education needs of people with TB? What are patients’ knowledge 

on TB facts, treatment, adherence, etc.? 

 What are the health education needs (and KAP) of newly arrived immigrants and/or 

“transient” foreign-born persons with respect to TB transmission, treatment, and 

adherence? 

 What emotions do patients feel when hearing their diagnosis? How can we best assess 

these emotions and help address them? 

 What are the effects of knowledge and attitudes among different ethnicities and 

nationalities on LTBI treatment initiation, adherence, and completion? 

 What is the relationship of patient fears about TB diagnosis and/or treatment and 

completion of treatment? 

 How can behavior change theories and models be used to better understand and 

intervene (interventions) for LTBI? 

 Can we adapt the Prochaska and DiClemente’s Transtheoretical Model utilizing the 

stages of change constructs to TB patient education (particularly LTBI)? 

 What intervention(s) and activities effectively remove or minimize patient engagement 

barriers? How do other barriers, including patient fear, affect TB treatment 

completion? 

 What qualitative (ethnographic) research (e.g., case studies) can we conduct with 

patients in each group to provide descriptive content on 1) changes in experience over 

time, and 2) communication to family, peers, and others in a patient’s household?

 What literature exists on the accuracy of self-reporting, including issues that relate to 

interviewer and respondent relationships (e.g., gender, class), patient sensitivity, social 

desirability bias, and demand characteristics? 

B. Patients’ behaviors 

1. Health care-seeking behaviors 

Health care-seeking behavior for TB includes the recognition of TB-related symptoms, 

presentation to health facilities and/or alternative medical resources (e.g., family and 

community healers), and adherence to effective treatment regimens and treatment 

monitoring. Individual factors, such as knowledge, attitudes, gender, sex, ethnicity, 

income, and education, in addition to health service barriers, including accessibility 

and acceptability of care, cost of services, and quality of care, can often delay or 

prevent a person from seeking TB care and treatment. 

Forum participants identified the need to further understand and influence the barriers 

and facilitating factors to seeking health care for LTBI and TB diagnosis, treatment 

monitoring, and completion of treatment for different populations. Specific questions 

were raised regarding the availability, accessibility, acceptability, and affordability of 

care. In addition, the group discussed the role of further understanding how an 
94 

individual’s perceptions of the health care system and health care providers influence 

their health seeking behavior. 

 For different groups, what are the barriers to care seeking? Do they include the 

availability, accessibility, acceptability, and affordability of care? Is stigmatization a 

reason for delay in seeking care for TB? 

 Why do persons who have symptoms and known past exposure not present earlier for 

diagnosis? Do barriers include denial or fear? 

 What factors predict initiation of LTBI treatment? 

 What is the effect of using QuantiFERON testing vs. Purified Protein Derivative (PPD) 

on patient acceptance, especially regarding LTBI? 

 From the case worker perspective, what are some patient models of disease regarding 

treatment-seeking behavior? 

 What is the image of “public health centers” among foreign-born persons? How does 

this image affect health-seeking behavior? 

 What are the systematic (operational) issues regarding delays in TB diagnosis? Are 

foreign-born TB patients (compared with U.S.-born) more likely to have longer delays 

in seeking care? Are they likely to utilize more health care providers than U.S.-born 

persons before diagnosis? 

 How is a foreign-born patient’s TB treatment-seeking behavior in this country 

influenced by the policies and practices of his/her home country? (Suggested 

methodology was to conduct a linked study with the foreign-born TB patient’s country 

of origin focusing also on the communities, providers/programs, policy makers, etc.) 

 What social and economic disparities hinder people from seeking care? Does perceived 

racism hinder health-seeking behavior? 

 What are the effects of medical pluralism on treatment-seeking behavior? What are the 

delays and sources of care? 

 How can we reduce aversion to venipuncture? How do we increase the value of one 

visit for LTBI testing? 

 Will educational materials which address common misconceptions towards TB increase 

treatment-seeking behaviors among foreign-born persons? 

2. Adherence to treatment 

Treatment regimens for LTBI and TB include providing the safest, most effective 

therapy in the shortest amount of time and ensuring adherence to prescribed regimens. 

The major determinant of a successful treatment outcome is patient adherence to the 

prescribed drug regimen. Nonadherence can lead to inadequate treatment which can 

result in relapse, continued transmission, and the development of drug resistance. 
95 

Directly observed therapy (DOT) and self-administered therapy are two strategies 

commonly used in TB control. DOT, a major component of case management, is 

currently recommended for all patients with TB disease. In addition to DOT, research 

has shown the use of incentives and enablers can also enhance patient adherence. 

Directly observed treatment for LTBI is less common due to limited resources. 

Ensuring treatment completion of LTBI poses unique challenges as it is often selfadministered. 

Forum participants identified the importance of further understanding the barriers and 

facilitators that affect the initiation, duration, and completion of treatment of LTBI and 

TB disease, specifically for different populations, such as foreign-born persons and 

incarcerated/newly-released prisoners. Discussion focused on ways to better understand 

and enhance DOT. In addition, a focus of the discussion centered on how to improve 

patient acceptance of LTBI treatment. The discussion also posed questions on how 

behavior change theories and models could be utilized to better understand and overcome 

barriers to treatment for LTBI and TB disease. 

 Who is at high risk for non-adherence? 

 What indicators predict patient adherence to treatment for TB/LTBI, particularly in 

groups such as Latino immigrants? 

 What factors influence positive adherence, and how are these to be used to predict 

treatment regimens (daily/bi-weekly) necessitated in different DOT groups? 

(Suggested methodology is the use of retrospective studies) 

 What are the barriers to completing LTBI treatment? 

 What are the true “costs” of adherence (e.g., job loss, day care, and loss of social 

status)? 

 What are some ways to address issues that relate to adherence and completion of LTBI 

and TB treatment among “hard to reach populations” (e.g., persons released from jail)? 

 What is the relationship of patients’ capacity to engage in the TB treatment plan and 

completion of treatment? 

 What types of framing (i.e., positive vs. negative) best promote adherence? 

 Which conceptual models best explains TB adherence behavior? 

 What is the relationship of the patient’s participation in health care decisions and 

effective TB treatment completion? 

 How can we best understand and then manipulate patient risk/benefit calculations 

regarding LTBI initiation and completion? 

 What interventions can address basic needs (e.g., housing) and treatment adherence 

versus those that focus only on treatment adherence through methods such as education 

and/or incentives? 

 What cultural and educational interventions address adherence with TB and LTBI 

treatment? 
96 

 What interventions and activities effectively remove role model barriers to TB 

treatment completion? 

 Can peer support (e.g., the pairing of a patient with someone who is also experiencing 

the disease) aid in adherence? What is the usefulness of a patient-to-peer educator 

match? 

 Does a core team approach, which includes former TB patients who have successfully 

completed treatment, improve adherence and treatment completion among persons 

from high-risk groups? 

 What is the effect and cost-effectiveness of a cultural intervention (e.g., educational 

intervention) on LTBI therapy adherence in Latino immigrants? 

 Will the use of a standardized educational intervention guided by constructs from 

health behavior theories increase the number of skin test positive contacts initiating / 

completing treatment? 

C. Patient satisfaction 

Patient satisfaction is how individuals regard the health care services or the manner in 

which they are delivered by health care providers as useful, effective, or beneficial. It 

is often based on patient expectations of care and the self-assessment of their 

experiences. Patient satisfaction may play a major role in a patient’s behaviors. If a 

patient is dissatisfied with the relationship with their provider or with the clinical 

setting, he or she is much less likely to be adherent to medications, keeping 

appointments, identifying contacts, and so forth. Research has shown that patient 

satisfaction can be increased with effective patient-provider communication and 

development of a trusting relationship. 

Forum participants identified the importance of the relationship between a patient, 

provider, and health care system that serves them and the need to better understand this 

relationship and the role it plays, especially from the perspective of different ethnic and 

cultural groups. Forum participants also expressed the importance of determining how 

patient satisfaction may be influenced by TB care and services. They also highlighted the 

need to explore the influence of patient satisfaction on behavior such as adherence. 

 What patient, clinic, or service factors influence patient satisfaction with TB services? 

What factors correlate with patient default? 

 What is the relationship between patient satisfaction with the TB treatment process, 

structure, and system and TB treatment completion? 

 What are some ways to elicit feedback from patients about how to improve TB care? 

What types of exit surveys after treatment completion should be used? 
97 

D. Social stigma 

Evidenced both in research and in practice, stigma associated with TB appears to be 

universal. The consequences of stigma can be seen affecting care-seeking behaviors, as 

persons have been known to hesitate or choose not to disclose their TB status to family, 

friends, and co-workers out of fear of being socially ostracized, in addition to losing 

their employment or temporary housing. Research has demonstrated that in some 

cases, personal rejection occurs as a result of the stigma surrounding TB. Stigma has 

also been shown to hinder adherence to treatment. By identifying the consequences of 

stigma, social science research has illustrated the need for effective intervention 

strategies to mitigate it. 

During breakout discussions, the research questions surrounding stigma highlighted the 

continuing need to identify the effects or consequences of stigma on care seeking, 

adherence to treatment, and cooperation with health care providers, especially during 

contact investigations, to determine whether certain populations or sub-populations (e.g., 

foreign-born communities) are adversely affected by stigma and in which settings (e.g., 

residential or workplace). Forum participants also raised the issue of better 

understanding different perspectives and sources of stigma. Additionally, discussions 

revolved around the need for identifying and testing effective ways to mitigate the 

influences that stigma has on individuals and communities. 

 What current research exists on stigma associated with TB as well as other issues (e.g., 

HIV/AIDS)? 

 How does stigma differ by income levels? Are low-income patients as concerned with 

stigma as middle or upper class TB clients? 

 What effects, positive and negative, does stigma have on decisions to seek help, initiate 

treatment, and complete treatment? 

 What are some reasons, such as stigmatization, for delays in seeking care for TB? 

 What is the effect of stigma on foreign-born women with regard to TB? 

 How can worksite and residential site-based outreach, such as in nursing homes and 

homeless shelters, be done in non-stigmatizing and non-penalizing way, so that people 

do not have to fear losing their jobs or the ability to stay at a site? 

 How can we use what we have learned about stigma to motivate patients? 

 What are some ways to reduce perceived TB stigma among patients and their families? 

What tests can we conduct to determine the best approaches to improving TB program 

efficiency and treatment completion rates? 

 Would frequent media production on TB prevention and stigma increase TB awareness 

for government officials? African-American communities?

 Can stigma be reduced through ad campaigns? (Suggested methods include using 

various experimental designs) 
98 

 What survey research can we conduct in patient and provider populations to assess 

discrimination, stigma, and treatment issues among people with HIV/TB as well as 

people with TB in the home environment, community, and worksite? 

 Are current conceptual frameworks (for understanding stigma) adequate? 

o If “yes” to above, what frameworks (e.g., focus groups, interviews, and surveys) 

can be used to collect research on providers and patients? 

o If “no” to above, what formative research can be conducted on the origins of TB 

stigma and its specific components? 

 How do we define “stigma” from the perspectives of the patient, provider, and 

community? Who is the stigmatizer and why? (Suggested methods include the use of 

focus groups and the Delphi technique) 

E. Providers’ knowledge, attitudes, and perceptions 

A health care provider’s knowledge, attitudes, and perceptions (KAP) about LTBI and 

TB play an important role in their ability to diagnose and treat individuals with TB. A 

variety of factors, such as medical and health-related training (e.g., U.S.-training vs. 

foreign training, generalist, or specialist), cultural and ethnic background, practice 

settings, preferred sources of information and learning styles can influence providers’ 

knowledge, attitudes and beliefs about LTBI and TB. 

Forum participants identified the need to better understand the TB-related knowledge, 

attitudes, and perceptions of different providers in a variety of practice settings, including 

private physicians, primary care physicians, civil surgeons, international medical 

graduates (IMG), and providers who serve foreign-born populations. Forum participants 

called for the further use of health behavior models and theories to be used as 

frameworks to better understand the factors that influence knowledge, attitudes, beliefs 

and practices of TB providers and how these factors influence their ability to diagnose 

and treat TB patients. 

 What are the current levels of TB KAP of health care providers, particularly among 

non-health department providers, primary care physicians, civil surgeons? 

 Are provider characteristics (e.g., attitudes and knowledge) and other factors (e.g., time 

and workload) important in predicting adherence and successful treatment? 

 What are effective methods for raising TB awareness (e.g., the index of suspicion) as a 

differential diagnosis among private health care providers? 

 In seeking to change foreign-trained physicians’ views of Bacille Calmette-Guerin

(BCG) vaccine and LTBI, is the message or the process more important? 

 In what ways do gender and ethnicity preconceptions of patients affect program 

performance, including timeliness of diagnosis, nature of relationship with patient, and 

case management? (Suggested methods include using a mix of qualitative and 

quantitative methods, such as conducting interviews/surveys with providers* and 

patients; having providers and patients keep diaries; and observations.) 

*Providers can include a broad spectrum, (e.g., outreach workers and anyone who has contact with patients). 
99 

 What specific methods or approaches are most effective in educating private health care 

providers about LTBI and TB? 

 What are some ways to develop and test alternative modes of educating IMGs and 

private providers regarding disease and treatment of LTBI and TB? 

 What are some ways to conduct a quasi-experimental group design with practitioners 

using a “standardized” approach versus a tailored messaging approach (e.g., counseling 

and encouragement vs. education)? Some behaviors on which to focus include 

adherence behavior, appointment keeping, and completion of treatment. 

F. Provider training and practices 

Providers serving individuals at risk for TB in the United States come from a wide 

range of backgrounds and perspectives. They may have differing knowledge, 

attitudes, and practices related to TB prevention and control based on factors such as, 

where they completed their medical training, residency, board certification 

requirements, and continuing education experiences. Personal and cultural factors 

may also affect their practices. All of these factors may influence the providers’ level 

of professional competence, cultural competency, and clinical behaviors, including 

their adherence to professional practice guidelines. 

1. Diverse training 

Providers have different levels of knowledge, attitudes and practices related to TB 

prevention and control, based on factors such as where they completed their medical 

training, residency, board certification requirements, and continuing education 

experiences. Moreover, many foreign-trained providers and international medical 

graduates (IMG) have an increasingly important role in TB prevention and control 

efforts, as they may be the first point of contact for foreign-born individuals with TB. 

Forum participants identified the need to assess the impact of working with providers of 

different cultural and professional backgrounds, who have undergone different types of 

training in the area of TB control. Participants also identified the need to improve 

collaborations between health department and non-health department providers. 

 How can health care workers best assess patient levels of knowledge and be trained to 

match educational messages and interventions to patient needs? 

 How do we best train TB case workers based on lessons learned? 

 What successful practices have been used to entice non-health department providers to 

cooperate with the health department? 

 How can we get private providers and international medical graduates to do a better job 

of diagnosing, prescribing, and treating LTBI? 

 How can we better improve foreign-trained providers’ contributions to TB control in 

non-health department settings? 

 Can an educational / awareness campaign encouraging providers to consider TB in the 

differential diagnosis of respiratory symptomatic patients increase detection of disease 

in care settings (e.g., emergency rooms, walk-in clinics)? 
100 

2. Cultural competency 

The role of cultural competency in U.S. TB programs has become increasingly 

important, especially over the past two decades as the proportion of persons with TB 

who are foreign born has rapidly increased and now surpasses U.S.-born cases. In 

addition, widening disparities have emerged among other U.S.-born groups, such as 

African Americans in the Southeast. Efforts to promote health and prevent and treat 

disease within culturally diverse groups will involve building the capacity of programs 

to become culturally competent. This is extremely important in health care, as it has 

generally been shown that minority groups use fewer services and are less satisfied in 

general with their care. Furthermore, patients may avoid care out of fear of being 

misunderstood or discriminated against. Providers need to be aware of and 

understand the impact that culture can have on a patient’s TB knowledge, attitudes, 

beliefs, and practices. By increasing the cultural competency of providers, they will be 

better equipped to provide the most appropriate TB care and treatment. 

Forum participants identified the need to further understand the role of cultural 

competency on the delivery of services to TB patients and ways to increase cultural 

competency among health care providers, including public health nurses and outreach 

workers. In particular, participants focused on how culturally competent health care 

workers can influence patient’s adherence to treatment for LTBI and TB. 

 Does being cultural competent make a difference? How can health departments become 

sensitive to patients’ needs without stereotyping? (Suggested methodology is to 

conduct evaluation research) 

 Does cultural competency have any effect on relationships with patients? Does it lead 

to better adherence and completion rates? 

 Is further research needed on the effect of cultural competency training (evaluation and 

efficacy) for outreach and public health staff? 

 What is the effect of cultural competency training of staff on LTBI adherence in 

immigrants? 

 What core components would constitute a training program to enhance cultural 

competency among front line health care providers? Which components generate the 

most significant awareness of change? 

 What are the cultural competency training needs of public health nurses and TB 

outreach workers? What are the evaluation outcomes of such training? 

 From a research, treatment, and control perspective, how should the issue of “pigeon 

holing” stereotypes be addressed among TB control staff, providers, and patients? 

 How do providers best acknowledge and incorporate traditional cultural beliefs and 

behaviors of foreign-born patients into patient-centered needs assessments, TB 

screening, diagnosis, and patient treatment plans? 

 How do we, as researchers and program persons, acknowledge, utilize and/or 

incorporate the use of traditional methods among ethnic groups (especially among 

foreign-born persons from Southeast Asia) regarding TB treatment? 
101 

 Are clients more likely to complete treatment if their provider(s) is of the same 

ethnicity, gender, class, or language? (Suggested methodology is to conduct 

intervention studies research, especially on topics, such as LTBI adherence) 

 Regarding message acceptability, is there a difference in knowledge and adherence 

behavior when the caregiver is matched with the patient on race, gender, or both, 

particularly in generally segregated communities? 

 What specific methods should be developed for assessing cultural beliefs and behaviors 

that are related to TB?

3. Clinical Practices 

Clinical practices of providers can include TB screening and treatment, patient 

management, collaborating with the health department for contact investigations, and 

adherence to guidelines and recommendations. Just as patients are faced with 

individual or structural barriers to adhering to LTBI and TB treatment, health care 

providers also face numerous challenges and barriers to adherence to TB screening 

and treatment guidelines and recommendations. Providers must be aware of CDC and 

American Thoracic Society guidelines in order to implement them. In addition, other 

barriers such as provider background and practice setting may influence their 

adherence to guidelines. Identification of barriers to the awareness of and adherence 

to guidelines and ways to address these barriers can improve provider practice and 

lead to the provision of more effective health care. 

Forum participants identified the need to determine ways to increase providers’ 

awareness and adherence to TB treatment guidelines for providers in different health 

care settings. In these discussions, “providers” include private providers, community 

health workers, case workers, non-health department physicians, and foreign-trained 

providers. 

 What provider behaviors best prevent TB outbreaks? How can they reduce diagnostic 

delay in patients with TB? 

 What are the effects of medical pluralism on provider response to patients’ treatment 

models? (Special relevance should be given to foreign-born persons for delayed 

diagnosis and adequate treatment of LTBI and TB) 

 How do opinion leaders change behavior of others? How can opinion leaders improve 

translation of recommended treatment standards to provider practice? 

 What type of practitioner’s guideline is needed to proactively identify “high-risk of 

drop-out” patients in order to address issues which would prevent dropping out of care? 

What information should be provided to reinforce and support positive health behaviors 

and their determinants?

 What methods should be explored for improving provider adherence to TB guidelines 

and recommendations? 
102 

III. Interpersonal 

Interpersonal influences on behavior focus on the relationship between two individuals 

or units regarded as a pair. Examples include the patient-provider relationship and its 

impact on both the patient and provider as well as influences of a family member, 

significant other, or peer on a patient.

A. Communication between patients and providers 

Communication between patients and providers is critical for effective health care. It 

is a fundamental element that helps to shape the patient-provider relationship and 

foster trust. Communication includes appropriate linguistic concordance, optimal use 

of interpreters when necessary, verbal and nonverbal expressions and cues, and good 

listening skills by providers. Communication also ultimately reflects the dynamics of 

the relationship between a provider and the patient. Provider-patient communication 

can impact trust, patient satisfaction, and treatment adherence. 

Forum participants identified the need for additional research to understand the role of 

provider-patient communication in effective TB case management. Participants discussed 

the need to foster positive interactions and to build trusting and caring relationships 

between patients and providers. 

 How do we create and improve positive interactions and build trusting and caring 

relationships between patients and providers? 

 What are the key components to building trust in the patient/provider relationship? 

B. Family and peer influences 

A TB patient’s family, peers, and social networks can be very influential on the 

patient’s behavior. Family and peer influences can affect an individual’s decision to 

seek treatment and to adhere to provider treatment recommendations. In addition, 

peer and social influences can impact a TB patient’s willingness to identify contacts 

during a contact investigation. 

Forum participants identified the need for research to further understand the family and 

peer in terms of whether and when a patient enters (and remains in) care. 

 How can we reach supporting populations to reduce fear of TB transmission in 

household/worksite? 

 How does TB affect families as a whole? 

 How do we better educate the coworkers, friends and relatives of the TB patient? What 

messages do family members and others need in order to accept and support the 

patient’s diagnosis? 

 How can TB program staff integrate the families (including extended family members) 

and the communities of TB patients into the TB process of education, case 

identification, treatment, follow-up, prevention, and re-integration into the job and 

community to prevent stigma and discrimination? 
103 

 What are some ways to develop culturally sensitive and appropriate strategies to 

educate families and coworkers and communities about TB? 

 What is the effect of family member influences, especially women, on their family 

member’s health seeking behavior? 

 How can TB programs assist and support female patients in fulfilling their familial 

roles given their illness? 

 How can social networks be involved in positive and facilitating ways regarding a 

patient’s TB experiences? 

 What are the community influences on health behaviors? What is the impact of 

community health workers (peers) on treatment initiation and completion? 

 What is the role of social support in LTBI adherence in Latino immigrants? 

 What is the application of a social network framework to at-risk TB populations? 

 What is the relationship of the patient’s role models to effectively completing TB 

treatment? 

 Who are the best, most effective role models or opinion leaders of high-risk patients?

IV. Health Systems and Organizations 

Influences of health systems and organizations on behavior focuses on how structural, 

economic, and other organizational forces can affect the views of individuals, small 

groups, and communities. Examples include the availability, accessibility, and use of 

health care services by individuals, and collaboration between and among provider 

communities and other systems.

A. Organizational structure 

The way in which the health care system is organized may play a role in affecting both 

patient and provider behaviors. Whether the system has a vertical or horizontal 

structure, whether services are integrated with other health and social services or are 

part of a collaborative network, and how the health care system is impacted by other 

systems within a society may impact availability, delivery, and acceptability of services.

1. Collaborations between provider communities and systems 

There are many different social and behavioral determinants involved in TB 

transmission, identification, and treatment success. Certain factors that place 

individuals at high risk for TB, such as poverty, substance abuse, and homelessness 

can be greatly impacted by the availability and quality of social services. Both private 

and public collaborations between and among existing social service agencies and TB 

control efforts, as well as timely and appropriate social service referrals for individuals 

with TB, may play an important role in the efforts to successfully eliminate TB.
104 

There are also a number of relevant collaborations between TB services and other 

health-related entities that may need to be better understood and cultivated. Given the 

high rate of TB/HIV co-infection among certain populations, collaboration between or 

integration of TB and HIV services may lead to better treatment outcomes and 

improved satisfaction among persons receiving these services. Collaborations with 

mental health and substance abuse services, homeless shelters, and correctional 

facilities hold equal promise. 

Forum participants identified the need to determine ways to increase collaboration 

between TB programs and other health and social service agencies for related conditions 

(e.g., HIV/AIDS, mental health, and substance abuse) to improve TB diagnosis, case 

management, and integration of services. Specific areas for increased research include 

focusing on patients with multiple/varied needs, U.S.-Mexico border issues, and 

collaboration with correctional systems, Immigration and Customs Enforcement, and 

other agencies.

 What mix of TB and other services are most effective in different communities, and 

what are the difficulties encountered in providing such a mix? What mix is best for the 

patient and provider? 

 What are some ways to develop collaborations with the justice system (e.g., county 

jails)? 

 What are some ways to increase U.S. (south of border) and Mexico/Central America 

collaboration through the use of the government, health care providers, academic 

institutions, and community agencies? How should the community of origin be 

factored into this? 

 What are the country specific TB prevention and control strategies of Mexican, Central, 

and South American health departments and communities? 

 How can TB control and prevention partnerships be developed between U.S. and 

Mexican local health departments, specifically in Mexican communities? 

 What are the barriers that health providers and health departments face when doing TB 

control and education with labor and services providers?

 What are some ways to identify and compare better methods on increasing 

collaboration between TB control programs and other health and social service 

agencies? 

○ How can coordination of care (i.e., systems of care) be increased for patients with 

multiple health issues, such as co-morbid conditions? 

○ How can coordination of mental health care with TB treatment and adherence 

interventions be increased? How can patients with mental health problems best 

receive care? 

○ What can be applied from HIV practices to TB with regard to incorporating 

screening and care into jail settings? 

○ How can TB be integrated into HIV provider and community planning group 

activities? What about substance abuse provider activities? 
105 

○ How can constraints, such as environmental ones, be overcome in the 

implementation and provision of HIV counseling and testing in TB programs and 

clinics?

 What specific interventions would positively impact the fact that clients in correctional 

facilities are referred to the community [health center] for follow-up of LTBI therapy? 

 What strategies or models for collaboration lead to better patient outcomes, not only for 

TB, but for a patient’s holistic health? (Suggested methodology is to conduct 

operational research using case studies.)

 Using an HIV case model, what type of comparison can be made on the following: 1) 

an increase in the number of those who know their TB status; and 2) the number who 

receive appropriate treatment? 

2. Impact of sharing patient information 

Patients who have other health and/or social issues such as TB/HIV co-infection, 

diabetes, substance abuse, and mental health issues, in addition to TB or LTBI, may 

have multiple providers. The sharing of patient information becomes a crucial 

component in the provision of proper and effective health care, especially as it relates 

to a patient’s TB treatment regimen and follow-up care. Providers who take a holistic 

approach to their patient’s health and who thus have a complete picture of their 

patient’s health and well-being are better equipped to make well-informed decisions 

that ensure the most appropriate TB care and treatment.

Forum participants identified the need to focus upon the impact of sharing (or not 

sharing) patient information on case management, service coordination, and health 

outcomes among managing providers in varying settings, such as health departments and 

correctional, mental health, and substance abuse facilities.

 What is the impact of sharing and not sharing of patient information on provider 

behavior and treatment outcome? 

 Does the sharing of client records among managing providers (e.g., county health 

departments, jail system, mental health facilities, and substance abuse facilities) 

increase the quality of case management for clients with TB?

 What are the key elements of a medical record that health providers need to start and 

continue care? 

 What type of retrospective analyses of clinical medical records can be conducted to 

develop a patient profile? How can factors and determinants be identified for patients 

who completed care and for those who dropped out, based on their medical charts? 

 What types of evaluation can be conducted on health data transfer systems currently in 

place for TB? 
106 

B. Service delivery 

The delivery of health services plays a major role in how patients receive TB care and 

treatment. From an organizational perspective, accessibility and acceptability of 

services, cost of services, and quality of care can often delay or prevent a person from 

seeking TB care and treatment. Through the use of patient-centered approaches and 

effective case management, these systematic barriers can be reduced or alleviated, 

resulting in improved provision of care and better treatment outcomes.

1. Patient-centered approaches 

Patient-centered approaches focus on bringing together compassion, empathy, 

responsiveness, and resources to the needs, values, and expressed preferences of 

individual patients. Effective patient-centered care is essentially a partnership 

between the provider and the patient. It involves determining individual patient needs 

and expectations while ensuring that efforts are made to address those needs and 

expectations by the health care provider(s).

Forum participants recognized the potential benefits of delivering TB control services 

which embody a patient-centered approach, and suggested that additional research is 

needed to identify, compare, and standardize different methods and models for patientcentered care.

 What are some patient-centered approaches that can be tested, standardized, and 

replicated? 

 What are some ways to develop and compare different methods for conducting patient 

needs assessments? 

 How are client-centered needs assessments best utilized in developing client-centered 

interventions? Do we need to restructure needs assessment tools to be holistic? 

 How do we demonstrate the added value of patient-centered TB treatment? How can 

this be applied to other services? What are the synergistic influences of TB control 

programs on those other services? 

2. Case management 

Quality case management is an important component of effective TB care. It holds the 

potential to increase treatment adherence and treatment outcomes by tailoring case 

management to the patient, by making appropriate referrals to needed health and 

social services, and helping to remove barriers to treatment success. However, little 

empirical evidence exists that systematically confirms the effect of the various types of 

case management practices. Part of the reason for this may be that many case 

management practices are not standardized and vary based on case management 

models and institutions. 

Forum participants identified the need to determine the influences of case management 

on multiple outcomes (e.g., treatment outcomes, reduced homelessness, care for substance 

abuse, receipt of other appropriate social and other health resources) as well as 

approaches to strengthen case management practices.
107 

 How can negative outcome expectations be overcome in order to provide HIV 

counseling and testing in TB clinics? 

 What is the impact of using case management strategies in homeless shelters (and also 

jails) on multiple outcomes, including LTBI adherence, reduced homelessness, and 

increased access to mental health care and substance abuse treatment? 

 Would the quality of case management improve if addressing social needs was a 

standard part of the model?

 What types of demonstration projects can be used to apply case management strategies 

that are effective with patients with active TB to LTBI patients? 

 What are some ways to conduct theory based experimental or quasi-experimental 

studies that test specific methods to improve efficiency and effectiveness of TB control 

programs? 

3. Advantages and disadvantages of directly observed therapy 

Directly observed therapy (DOT), in which a health care worker or other qualified 

individual watches the patient swallow every dose of the prescribed drugs, is an 

extremely effective strategy for making sure patients take their medicines. DOT is 

strongly recommended as part of a patient-centered case management plan because it 

is difficult to reliably predict which patients will be adherent. Successful treatment 

programs are dependent upon public health programs and providers accepting 

responsibility for a patient’s care by ensuring that DOT is appropriately administered. 

As TB incidence declines and programs are turning their attention to the treatment of 

LTBI, more TB programs are trying to use DOT for LTBI patients. Data indicating 

low completion rates among patients on treatment suggests the importance of 

determining the appropriate use for DOT with LTBI patients.

Forum participants identified the need to conduct further research on the effectiveness of 

varying DOT modalities for LTBI and TB, such as clinic, home, or field-based DOT. 

Forum participants also raised the need to identify patient-centered DOT strategies that 

are most appropriate to the particular needs of patients, questioning the one-size fits all 

mentality. Participants also focused on the need to further delineate the usefulness of 

DOT in treating TB and other co-morbid conditions, such as HIV.

 What are the most effective DOT strategies based on existing research? 

 How can DOT services be most cost effectively delivered? 

 Given that directly observed preventive therapy (DOPT) is an expensive modality, what 

are cost-effective models for achieving treatment of LTBI? 

 Does the initial education of the infected patient regarding the use of DOPT affect the 

completion of treatment? Are factors, such as advising not to use alcohol, initially 

emphasized? Is the lack of a health department’s legal power to enforce LTBI 

important to why clients drop out? 
108 

 What case control studies can be conducted to identify predictors of persons who 

succeed and persons who fail in self-administered programs for LTBI, and who may 

benefit from DOPT? 

 What additional research is needed on DOT with regard to TB treatment adherence? 

Are there parts of the DOT process that interfere with adherence? 

 What method, clinic-based versus home-based DOT for TB treatment, works best and 

for which patients? 

 Can changes be made to the DOT process that will aid in adherence (e.g., increase in 

patient participation, feelings of control)? 

 Is selective DOT a viable option? What components of DOT can be delivered 

separately? 

 What are some ways to test and evaluate different directly observed therapy-short 

course (DOTS) “flavors” for appropriateness? 

 How can patients be screened in terms of determining 1) what basic needs will enable 

them to complete therapy, and 2) what flavor of “DOTS” (e.g., observation, control, or 

medicine pick up) works best for them? 

 Is DOT for HIV and TB helpful in treating both diseases? 

 How should a randomized clinical trial (RCT) of full vs. selective DOT with a detailed 

protocol for patient management be conducted? What specific components (e.g., home 

visits, clinic visits, or self-management) are effective? What specific outcomes, such as 

completion rate, failure and relapse rate, multi-drug resistance, and cost-effectiveness, 

are important to measure?

4. Role of incentives and enablers 

Research has shown that the use of incentives and enablers can enhance patient 

acceptance as well as adherence to treatment for both TB disease and LTBI. 

Incentives and enablers help patients continue and complete treatment and are widely 

used in facilities providing TB services. Incentives and enablers are most beneficial 

when they are tailored to the patient’s special needs and interests. Learning as much 

as possible about individual patients through the use of patient-centered approaches 

will help to identify their needs and better assist them in completing treatment. 

Forum participants identified the importance of further understanding the barriers and 

facilitators that affect the initiation, duration, and completion of treatment of LTBI and 

TB disease, and the role that incentives and enablers can have in achieving TB treatment 

goals, specifically for diverse populations such as foreign-born persons and incarcerated 

or newly released prisoners. 

 What are some ways to identify and distinguish basic needs from incentives and their 

impact on treatment completion? 

 What is the role and effectiveness of incentives in completion of treatment, particularly 

with DOT and without DOT? What about the use of DOPT? 
109 

 What incentives are effective with different foreign-born populations? With AfricanAmericans in the southeast? With the homeless? 

5. Contact investigations 

The contact investigation is an important component of TB prevention and control 

efforts, as it is a process for identifying persons exposed to someone with infectious TB, 

evaluating them for LTBI and TB disease, and providing appropriate treatment for 

LTBI or TB disease. In TB programs in the U.S., there is wide variability in the way in 

which contact investigations are conducted. Furthermore, the contact investigation 

can be sensitive for TB patients as they are required to elicit personal information, 

such as who they interact with, how often, and where. Little is known about the social 

and emotional impact of these investigations on the individuals involved and on the 

identification and follow-up of contacts. 

Forum participants identified the need to determine ways to improve contact 

investigations by, for example, gaining a better understanding of patient and contact 

perceptions and being more sensitive to involved parties to enhance contact investigation 

outcomes. Finally, more research is needed with providers to examine their perspectives 

on contact investigations.

 What are the perspectives of patients, contacts, and providers of contact investigations? 

What are the problems associated with contact investigations? How can the yield and 

patient satisfaction with contact investigations be increased? 

 How can contact investigations be improved? How can the process be better explained 

and made less intrusive to patients? What is the distinction between TB control and TB 

care? How can these be differentiated, and what would it look like? How can the 

process be made less punitive without jeopardizing public health? 

 Why do some contacts not want to be examined? For patients with TB disease who 

were unidentified but knew they were contacts, what barriers did they encounter that 

prevented them from getting tested? 

 What are some ways to systematically collect data on TB control and other programs in 

various settings, (e.g., prisons and homeless shelters) during investigations of TB 

outbreaks in order to identify “missed opportunities?” 

6. Health communications 

Health communications can be used to share information on TB with the general 

public, local communities, patients and contacts, as well as providers. Research has 

demonstrated that misconceptions about TB and the stigma associated with the disease 

still abound, suggesting the continuing need to increase knowledge and awareness of 

TB through effective channels of communication. Further research to better 

understand informational needs, identify appropriate and effective media for 

channeling information, and testing health messages related to many aspects of TB for 

a variety of audiences will enhance the effectiveness of TB control efforts and hopefully 

mitigate the stigma associated with TB.
110 

Forum participants identified the need to identify specific and tailored messages and 

messengers for improving communication about LTBI and TB diagnosis and treatment 

among patients and providers, as well as among family members and within the 

community. 

 What messages do family members need to accept and support the patient’s diagnosis?

 What type of message will increase the completion of LTBI treatment? 

 How do we integrate messages with traditional health beliefs of foreign-born patients 

and of the community? 

 What are current media messages in TV news and programs, newspapers, and 

magazines about TB and people with TB? Do these messages in daytime/primetime 

programs, newspapers, and magazines need to be improved or changed to be more 

effective? 

 Regarding message acceptability, is there a difference in knowledge and adherence 

behavior when the caregiver is matched with the patient on race, gender, or both, 

particularly in generally segregated communities? 

 What is the role of peers and other messengers in the delivery of health messages for 

patients, contacts, and providers?

 Does a core team approach, which includes former TB patients who have successfully 

completed treatment, improve adherence and treatment completion among persons 

from high-risk groups? 

 How do opinion leaders change behavior of others? How can opinion leaders improve 

translation of recommended treatment standards to provider practice? 

 What are the best places to advertise to high-risk groups? 

 What specific educational interventions are most effective in reaching clients in terms 

of type of delivery, type of message, time entailed, messenger, and cost-effectiveness? 

7. Special challenges of high risk settings and populations

a. HIV/TB 

Co-infection of TB and HIV presents challenges for both patients and the 

providers serving them. One challenge is related to the potential lack of 

collaboration among TB and HIV programs. It is important that TB providers 

offer HIV voluntary testing and counseling to both TB patients and high risk 

contacts, and that HIV providers offer TB screening and follow-up. Patients who 

have both TB and HIV may also face challenges associated with the burden of 

taking medicine for both diseases, as well as with the stigma associated with both 

illnesses. 

Forum participants identified the need to conduct research on patient, provider, and 

agency barriers to the integration of voluntary HIV testing and counseling in TB 

programs as well as the incorporation of TB services in HIV/AIDS programs.
111 

 How do the views of disease and patient agencies differ between TB as a single 

disease and HIV/TB co-infection? 

 Regarding HIV testing of persons with TB and LTBI, how can we better 

understand why TB and LTBI clients resist testing for HIV? What motivators can 

be used to get TB and LTBI clients to get tested? 

 How can the provision of HIV counseling and testing in TB programs be 

improved? 

 How can we help TB program managers and front line staff integrate HIV 

volunteer counseling and testing (VCT) into their TB program activities? What 

are the barriers and how can we reduce them?

 Is there a way that TB can be better integrated into HIV community planning 

group activities?

 How can we overcome the environmental constraints to implementing HIV 

counseling and testing in TB clinics? How can we overcome the negative 

outcome expectations to providing HIV counseling and testing in TB clinics?

 What survey research can we conduct in patient and provider populations to 

assess discrimination, stigma, and treatment issues among people with HIV/TB as 

well as people with TB in the home environment, community and worksite? 

 What are some effective models that can be used to increase HIV testing of TB 

patients?

b. Homelessness, unstable housing, and mental health issues 

TB control also faces significant challenges when dealing with homeless 

populations or with individuals who may also be experiencing mental health or 

substance abuse issues. These issues, combined with a lack of stable housing, 

make TB screening and follow-up, diagnosis, contact investigations, treatment 

initiation, adherence, and completion of treatment extremely challenging. 

Forum participants identified as important the need to assess the TB knowledge, 

attitudes, and perceptions (KAP) as well as other influences on behavior of homeless 

populations. Participants also identified the need to consider using patient-centered 

case management strategies to identify and address competing health and social 

issues for this population. 

 What are the TB KAP and influences of homeless people? 

 What is the impact of using case management strategies in homeless shelters (and 

also jails) on multiple outcomes, including LTBI adherence, reduced 

homelessness, and increased access to mental health care and substance abuse 

treatment? 

 How do we address the impact mental illness and addictions have on TB? 

(Suggested methodology is to conduct intervention research.) 

 What research is needed on mental health issues in regard to client behavior? 

What are some effective interventions that address mental health issues (comorbidities) of people with TB?
112 

c. High mobility jobs and migrant labor 

Given their mobility, migrant farm workers and other migrant populations 

present unique challenges to TB prevention and control programs with respect to 

diagnosis, treatment, continuity of care, and contact investigations. U.S.-Mexico 

border issues, such as immigration and frequency of border crossings, create 

additional challenges. 

Forum participants suggested conducting descriptive and ethnographic research 

using case studies as a possible method, among this special population. This type of 

research might help to determine ways to access migrant networks, mechanisms for 

tracking patients in a non-stigmatizing way, and ways to increase completion of 

care.

 In what ways does TB affect migrant groups vs. the general population? 

 How can we “track” migrant TB patients so that we follow-up on their treatment 

but don’t stigmatize them? 

 What data sources can be utilized to identify sites with high rates of migrant 

populations including Mexicans? 

 What survey tools can be used to access migrant populations within networks, 

such as employment settings, clinics, etc.? 

 What descriptive research can be conducted that tracks a small sample of mobile, 

high-risk populations? 

 How can migrant “pockets” (i.e., locations with significant populations) be 

identified? 

o What types of ethnographic research studies using quantitative and qualitative 

methods need to be conducted? 

o How should patients be screened for disease? How can persons with 

TB/LTBI be placed into care? 

o How should patients in care be followed to completion? (Suggested method: 

Interview patients at 18 months) 

 How should the following be conducted with mobile or migrant populations: 

o Targeted testing for significant percentages of TB? 

o Placing patients on TB treatment? 

o Enrolling patients in Migrant Clinician Network’s TBNet program? 

o Following patients through to treatment completion? 

o Following up with patients upon treatment completion, including reviewing 

for ease of contact, ease of tracking, percentage complete, and percentage 

lost?
113 

d. Incarceration 

Jails and prisons pose a unique challenge for TB prevention and control. Efforts 

have been made to improve the relationships between health department TB 

programs with jails and prisons to enhance TB screening and follow-up among 

inmates and correctional personnel. In addition, continuity of care can be a 

particular challenge for TB patients who are incarcerated during treatment and 

who are later released from prison or jail while on treatment. 

Forum participants discussed the need to conduct further research to identify ways 

to improve TB screening activities, as well as adherence to and completion of 

treatment for incarcerated persons and newly released prisoners. In addition, 

participants called for further research to examine how screening and treatment for 

TB can be incorporated into the diagnosis and treatment for other diseases such as 

HIV. 

 How can we provide demonstrations and conduct evaluations of programs 

intended to improve TB testing and follow-up in jails?

 What ways can we improve adherence and completion of TB/LTBI treatment 

among “hard to reach populations” (e.g., persons released from jail)? 

 How do we address TB for incarcerated populations returning to the community?

 What specific interventions would increase referral of clients in correctional 

facilities to community facilities such as health centers for follow-up of LTBI 

therapy? 

 How can we evaluate the use of incentives and educational based interventions 

aimed at increasing adherence to LTBI and TB treatment for persons being 

released from jail? 

 What can we learn and apply from HIV to TB with regard to incorporating 

screening and care into jail settings?

e. Substance use 

Substance abusers are at increased risk for TB. Substance abusers may have 

competing priorities that may prevent them from being diagnosed with TB, 

accepting and adhering to treatment regimens, and identifying contacts. 

Forum participants identified the need to better understand the TB knowledge, 

attitudes, and perceptions (KAP) of substance abusers as well as determine the best 

ways to address these issues, so that this population will receive the most effective 

TB care and services. 

 What are the TB KAP/influences of substance abusers? 

 How can patients with substance abuse problems best receive TB care? 

(Suggested methodology is a call for basic research) 
114 

f. Foreign born 

Although TB case rates have steadily declined since 1992, TB in foreign-born 

persons represents a significant challenge for TB control efforts in the United 

States. In 2002, TB case rates among the foreign born comprised 51% of 

reported TB cases in the United States.2

 Foreign-born populations may have 

unique cultural characteristics, practices, and circumstances related to their resettlement and adjustment to the U.S. that may influence their TB treatment and 

care. 

Forum participants identified the need to acknowledge, understand, and incorporate 

different health-related cultural beliefs and practices of foreign-born patients. 

Other issues that warrant exploration included foreign-born persons’ perceptions of 

the U.S. health care system and/or the providers who deliver care, determining the 

role of gender and ethnic differences between patients and providers, and 

identifying and addressing the wide range of barriers foreign-born persons 

encounter when accessing services related to LTBI/TB diagnosis, treatment 

initiation, adherence, completion, and follow-up. 

 What are the effects of knowledge and attitudes among different ethnicities and 

nationalities on LTBI treatment initiation, adherence, and completion? 

 What are the health education needs (and KAP) of newly arrived immigrants 

and/or “transient” foreign-born persons (e.g., Latino immigrants) with respect to 

TB transmission, treatment and adherence? 

 Are immigrant males at higher risk of contracting TB due to labor and 

environmental issues? 

 What is the image of “public health centers” among foreign-born persons? How 

does this image affect health-seeking behavior?

 What is the effect of stigma on foreign-born women with regard to TB? 

 What are the systematic (operational) issues regarding delays in TB diagnosis? 

Are foreign-born TB patients (compared with U.S.-born) more likely to have 

longer delays in seeking care? Are they likely to have more or less access to 

health care providers than U.S.-born persons? 

 What are the effects of migration patterns on foreign-born persons with regard to 

stigma, beliefs, social support, access to care, and ensuring continuation and 

completion of treatment? What happens at other end? How does a patient’s social 

support structure change with his or her relocation? 

 What are the barriers that immigrants face when accessing TB prevention, case 

identification, education, treatment, and follow up? 

 Will educational materials, which address common misconceptions towards TB, 

seen regionally throughout the world, increase treatment-seeking behaviors 

among foreign-born persons?

 What factors predict adherence to treatment in Latino immigrants? 

 What is the role of social support in LTBI adherence in Latino immigrants? 
115 

 How do we best incorporate cultural beliefs and behaviors into patient treatment 

plans, especially for Mexican and other foreign-born populations? 

 What incentives work with various foreign-born populations? 

 How do we integrate messages with traditional health beliefs of foreign-born 

patients and their community?

 What is the effect of new immigration policies on TB case identification, follow 

up, treatment, and adherence, especially for Latino immigrants? 

 What type of research is needed to maximize screening of new and recent 

arrivals? How is access to these populations gained? How can collaboration with 

Immigration and Customs Enforcement (ICE) and other similar agencies that 

focus on foreign-born persons be increased? 

 What are some ways to help undocumented persons overcome their fear of 

government agencies and institutions? 

 What is the explanatory model of TB in Latino immigrants? (Beliefs about health 

and sources of illness from Kleinman) 

 What type of bottom-up education package can be used for educating patients of 

different cultural groups about TB questions they may have, such as on TB 

medication, while also being sensitive to influences, such as the patient’s gender 

and age (e.g., family generation)?

 What is the effect and cost-effectiveness of a cultural intervention (e.g., 

educational intervention) on LTBI therapy adherence in Latino immigrants?

 How is a foreign-born patient’s TB treatment-seeking behavior in this country 

influenced by the policies and practices of his/her home country? (Suggested 

methodology was to conduct a linked study with the foreign-born TB patient’s 

country of origin focusing also on the communities, providers/programs, policy 

makers, etc.)

g. Pediatrics 

Children with LTBI and TB represent another population with unique 

characteristics and needs. The diagnosis and treatment of children is often 

dependent upon the role of the parent, primary care giver, and other adults. 

Forum participants felt it was important to conduct research to test alternative 

models to increase LTBI and TB screening and treatment among children.

 What provider behaviors can lead to more efficient LTBI diagnoses in children? 

Can the tuberculin skin test (TST) be avoided for low risk children? What tests 

should be conducted for the use of new testing tools for children? How do we get 

providers to use these screening tools, if effective? 

 What alternative models can be used for delivery of LTBI treatment among 

children? An example of an alternative model is the use of school-based parent 

administers with and without prompts (e.g., phone call reminders).
116 

V. Community 

Influences that are community-related affect behavior on both small and large-group 

levels, such as those in community settings. Examples include influences of family and 

social networks on individuals, the relationship between local health services and 

individuals and communities, and the impact of social stigma of TB on groups.

A. Impact of TB services on communities and patients 

Whether defined by a geographic region, a common interest or shared ethnic or 

cultural background, communities play an important role in people’s lives. Because a 

community typically shares a set of common interests and values and gains strength 

from this collective entity, it is important for health care providers to understand the 

communities they serve to effectively meet the community’s needs. Developing a 

respectful, collaborative relationship with communities may strengthen the delivery of 

health services and improve the general health and well-being of communities as a 

whole. 

Forum participants identified the need to determine the perceptions of TB within 

communities and to understand the origins of those perceptions and the influence of 

forces that affect people’s perceptions, such as the media. Participants also expressed the 

need to develop tailored, culturally-specific interventions to increase understanding of TB 

and reduce the stigma associated with TB. 

Participants across all groups discussed the need to determine the optimal relationship 

between health departments and the local communities they serve, as well as the role of 

community groups like community-based physicians in increasing TB awareness and 

delivering TB services. Suggestions were made to conduct more participatory action 

research and to define and determine how local communities can become involved in 

locally driven research. 

1. Influences of family and social networks 

Family groups and social networks have been shown to be extremely influential on 

many different health outcomes. In terms of TB outcomes, this influence can manifest 

itself positively by facilitating or supporting, for example, care-seeking, treatment 

adherence, and other patient behaviors. Conversely in other cases, misconceptions 

held by those close to individuals with TB can have negative effects such as increasing 

the level of stigma attached to the disease resulting in social ostracism or isolation. 

Furthermore, family units and social networks are often adversely affected by the 

introduction of TB and the consequent stressors into their networks. Successful TB 

control efforts based on a strong understanding of these issues may maximize the 

positive influences of social networks and minimize disruptions to family and social 

networks. 

Forum participants identified the need to better understand the role of social networks on 

health behaviors and determine strategies for strengthening the positive influences of 

social networks. Specific focus was given to identifying ways in which TB programs can 

work with families to better understand and mitigate the impact of TB services on social 

networks. 
117 

 How can we reach supporting populations to reduce fear of TB transmission in 

households and worksites?

 How does TB affect families as a whole? 

 How do we better educate the coworkers, friends, and relatives of the TB patient? What 

messages do family members and others need to accept and support the patient’s 

diagnosis? 

 How can TB program staff integrate the families (including extended family members) 

and the communities of TB patients into the TB process of education, case 

identification, treatment, follow-up, prevention, and re-integration into the job and 

community to prevent stigma and discrimination? 

 What are some ways to develop culturally sensitive and appropriate strategies to 

educate families and coworkers and communities about TB? 

 What is the effect of family member influences, especially women, on their family 

member’s health seeking behavior? 

 How can TB programs assist and support female patients in fulfilling their familial 

roles given their illness? 

 How can social networks be involved in positive and facilitating ways in a patient’s TB 

experiences? 

 What are the community influences on health behaviors? What is the impact of 

community health workers (peers) on treatment initiation and completion? 

 What is the role of social support in LTBI adherence in Latino immigrants? 

 What is the application of a social network framework to at-risk TB populations? 

 What is the relationship of the patient’s role models to effectively completing TB 

treatment? 

 Who are the best, most effective role models or opinion leaders of high-risk patients?

2. Social stigma 

Evidenced both in research and in practice, stigma associated with TB appears to be 

universal. The consequences of stigma can be seen affecting care-seeking behaviors, as 

persons have been known to hesitate or choose not to disclose their TB status to family 

or friends out of fear of being socially ostracized. Research has demonstrated that in 

some cases, personal rejection occurs as a result of the strong stigma surrounding TB. 

Stigma has also been shown to hinder adherence to treatment. By identifying both the 

sources and consequences of stigma, social science research has illustrated the need for 

effective intervention strategies. 

Social stigma was an issue raised in all of the breakout groups, highlighting the shared 

perception of the need to better understand its sources and identify effective ways to 

address it. During breakout discussions, forum participants specifically noted the need to 

define stigma from various perspectives, identify existing research to understand the 

impact of stigma, and propose specific measures to address and reduce stigma. Among 
118 

these measures, it was suggested to identify ways in which the public health community 

can alter its presentation of epidemiologic data to avoid the perpetuation of existing 

stigmatizations and to reinforce that TB is a curable disease. 

Proposed research questions focused on identifying the effects or consequences of stigma 

on care seeking and adherence to treatment, and determining whether certain populations 

or sub-populations are adversely affected by stigma. 

 How does stigma differ among different ethnic groups? How does it vary with 

demographics? (Suggested methodologies include conducting formative and 

quantitative research). 

 How can stigma be reduced among certain groups? (Suggested methodology is to 

provide massive education to those groups.) 

 What are some ways to enhance the presentation of epidemiological data in order to 

avoid stigmatization and to increase community empowerment? 

 What are some ways to avoid stigmatizing a community and to avoid essentialism of 

TB stigma and discrimination? 

 How can the families and the communities of TB patients be integrated into the 

patient’s treatment, follow-up, and re-integration into the job and community to prevent 

stigma and discrimination?

 How do we define “stigma” from the patient’s perspective? ...The provider’s 

perspective? ...And the community’s perspective? Who is the stigmatizer and why? 

(Suggested methods include the use of focus groups and the Delphi technique) 

 What are general community perceptions about TB and people living with TB? Where 

do they derive their understandings? What, if any, media influences exist that affect the 

community’s perceptions? (Suggested methodologies include conducting surveys [e.g., 

mail surveys] among university and high school students; and conducting focus group 

discussions with church groups and other existing community groups.) 

 Are current conceptual frameworks (for understanding stigma) adequate? 

o If “yes” to above, what frameworks (e.g., focus groups, interviews, and surveys) can 

be used to collect research on providers and patients? 

o If “no” to above, what formative research can be conducted on the origins of TB 

stigma and its specific components? 

 What survey research can we conduct in patient and provider populations to assess 

discrimination, stigma, and treatment issues among people with HIV/TB, as well as 

people with TB in the home environment, community, and worksite? 

 What are some ways to conduct an intervention study on the impact of locally 

developed education and messaging within communities on decreasing stigma? 

 What are some ways to develop and test community based culturally specific 

interventions to increase awareness and knowledge of TB and to reduce stigma 

associated with treatment?
119 

VI. Public Policy 

Public policy influences focus on the implications that public policies have on the 

behaviors of individuals, groups, communities, and organizations, with special 

emphasis on issues relating to government commitment, funding, health insurance, and 

immigration policies.

A. Government commitment and funding 

Governmental entities, from federal to local, play a critical role in TB-related services. 

From federal-level research funding to service delivery at local health departments, TB 

control is affected greatly by policy decisions. Given these arrangements, the 

development of a better understanding of the policy process and greater engagement of 

decision-makers by those working in TB control may lead to improvement in TB 

services. 

Forum participants identified as important the need to focus on identifying appropriate 

decision makers, potential advocates, and strategies to influence TB-related policies. They 

also specifically addressed funding issues such as the identification of effective ways to 

advocate for TB funding as well as possible models for allocation of funds within the TB 

framework.

 Who are the TB local, state, and national policy-makers? What are their interests? How 

can TB be made a policy agenda item? 

 How can state programs be influenced to advocate for TB? Where are the decisions 

being made? 

 Who are the best advocates for TB control? (i.e., What is the role of state programs in 

advocacy?) 

 What are the best ways to advocate for TB funding?

 What are some ways to conduct a demonstration in which TB funding is allocated 

similarly to Ryan White Care Act dollars? What are some ways to test an HIV model 

(e.g., Ryan White Care Act) within the TB framework? 

 Which cultural interventions can be practically integrated into TB programs with 

limited resources?

B. Health insurance 

As of 2002, data from the U.S. Census Bureau indicated that 43.6 million people were 

uninsured in the United States.3 The lack of health insurance among people in the U.S. 

creates a serious impediment for those who seek or wish to seek health care for LTBI 

or TB disease, especially as it relates to TB testing and treatment. It is unknown to 

what extent a lack of appropriate insurance coverage or fear of treatment costs hinder 

care-seeking, but it is suspected that this economic deterrent has clear negative 

implications.
120 

Forum participants identified the need to determine the effect of health insurance or lack 

of appropriate coverage for TB services on health behaviors and health outcomes, 

including access to TB diagnosis and treatment. Further research is needed to determine 

the impact this has on TB patients and their families, in addition to finding alternative 

funding solutions to increasing health care costs and expenses.

 What is the effect of health insurance (or lack thereof) in regards to early interventions 

for the treatment of TB? 

 How can the poor get health access (e.g., insurance)?

C. Immigration policies 

With over half of TB cases in the United States occurring among individuals born 

outside of the country, the link between immigration and TB services has become 

increasingly important in recent years. Efforts to coordinate public health efforts with 

immigration activities pose an evolving challenge as changes occur to immigration 

policy and enforcement agencies. Understanding the impact of these specific changes 

as well as developing a broader body of knowledge of immigrant issues in general, will 

likely lead to improved TB services and better health outcomes.

Forum participants identified as important the need to focus on the effect of immigration 

policies, specifically regarding recent changes to policies, on TB services. Additional 

discussion focused on the need to develop strategies for collaboration with immigration 

authorities to increase access to immigrant communities.

 What is the effect of new immigration policies on TB case identification, follow-up, 

treatment, and adherence? What about their effect on TB control among Latino 

immigrants? 

 What types of research are needed to maximize the screening of new and recent 

arrivals? Issues to address include access to the population and collaboration with 

Immigration and Customs Enforcement. 

 How can undocumented persons be helped to overcome their fear of government 

agencies and institutions? 
121 

Appendix D: Participant List 

Tuberculosis Behavioral and Social Science Research Forum 

December 10-11, 2003 

Atlanta, Georgia 

Rita Ailinger, PhD 

Professor 

George Mason University 

MSN: 3C4 

Fairfax, VA 22030 

Phone: 703-993-1926 

Fax: 703-993-1942 

E-mail: railinge@gmu.edu

Rachel Albalak, PhD 

Senior Epidemiologist 

Centers for Disease Control and Prevention 

Division of TB Elimination, SEOIB 

1600 Clifton Road, NE, Mailstop E-10 

Atlanta, GA 30333 

Phone: 404-639-2385 

Fax: 404-639-8959 

E-mail: Rka3@cdc.gov

Guadalupe Munguia-Bayona, MD 

Clinical Research Coordinator 

UNTHSC 

1101 S. Main Street, Suite 1600 

Fort Worth, TX 76104 

Phone: 817-321-4913 

Fax: 817-321-4920 

E-mail: gbayona@hsc.unt.edu

Gabrielle Benenson, MPH 

Health Education Specialist 

Centers for Disease Control and Prevention 

Division of TB Elimination, CEBSB 

1600 Clifton Road, NE, Mailstop E-10 

Atlanta, GA 30333 

Phone: 404-639-5320 

Fax: 404-639-8960 

E-mail: Gkb6@cdc.gov

Regina Bess

Health Education Specialist 

Centers for Disease Control and Prevention 

Division of TB Elimination, CEBSB 

1600 Clifton Road, NE, Mailstop E-10 

Atlanta, GA 30333 

Phone: 404-639-8987 

Fax: 404-639-8960 

E-mail: RDB1@cdc.gov

Henry Blumberg, MD 

Professor of Medicine 

Emory University 

Division of Infectious Diseases 

69 Jesse Hill Jr. Drive 

Atlanta, GA 30303 

Phone: 404-616-6145 

Fax: 404-880-9305 

E-mail: hblumbe@emory.edu

Cristina Booker, MPH

Analyst 

Abt Associates, Inc. 

55 Wheeler Street 

Cambridge, MA 02138 

Phone: 617-349-2681 

Fax: 617-349-2497 

E-mail: Cristina_booker@abtassoc.com

Leslie Boss, PhD 

Epidemiologist 

Centers for Disease Control and Prevention 

National Center for Environmental Health, 

EEH Division 

1600 Clifton Road, NE, Mailstop E-17 

Atlanta, GA 30333 

Phone: 404-498-1002 

Fax: 404-498-1088 

E-mail: LPB1@cdc.gov
122 

James Carey, PhD, MPH 

Behavioral Scientist 

Centers for Disease Control and Prevention 

Division of HIV/AIDS Prevention, BIRB 

1600 Clifton Road, NE, Mailstop E-37 

Atlanta, GA 30333 

Phone: 404-639-1903 

Fax: 404-639-1950 

E-mail: jcarey@cdc.gov

Betsy Carter, MPH, CHES 

Health Education Specialist 

Centers for Disease Control and Prevention 

Division of TB Elimination, CEBSB 

1600 Clifton Road, NE, Mailstop E-10 

Atlanta, GA 30333 

Phone: 404-639-8386 

Fax: 404-639-8960 

E-mail: Bkc9@cdc.gov

Kenneth G. Castro, MD 

Director 

Division of TB Elimination 

Centers for Disease Control and Prevention 

1600 Clifton Road, NE, Mailstop E-10 

Atlanta, GA 30333 

Phone: 404-639-8120 

Fax: 404-639-8604 

E-mail: Kgc1@cdc.gov

Patrick Chaulk, MD, MPH 

Senior Associate for Health 

Annie E. Casey Foundation 

701 St. Paul 

Baltimore, MD 21202 

Phone: 410-547-3672 

Fax: 410-547-3613 

E-mail: pchaulk@aecf.org

Paul Colson, PhD 

Program Director 

Charles P. Felton National TB Center at 

Harlem Hospital 

2238 Fifth Avenue 

New York, NY 10037 

Phone: 212-939-8241 

Fax: 212-939-8259 

E-mail: Pwc2@columbia.edu

Nick DeLuca, MA 

Lead Health Education Specialist 

Centers for Disease Control and Prevention 

Division of TB Elimination, CEBSB 

1600 Clifton Road, NE, Mailstop E-10 

Atlanta, GA 30333 

Phone: 404-639-8988 

Fax: 404-639-8960 

E-mail: Ncd4@cdc.gov

Beverly DeVoe, MS 

TB Program Director 

Georgia Department of Human Resources – 

TB Program 

2 Peachtree Street, NW, Suite 12-493 

Atlanta, GA 30202 

Phone: 404-657-2597 

Fax: 404-463-3460 

E-mail: bdevoe@dhr.state.ga.us

Agatha Eke, PhD 

Behavioral Scientist 

Centers for Disease Control and Prevention 

Division of HIV/AIDS Prevention, BIRB 

1600 Clifton Road, NE, Mailstop E-10 

Atlanta, GA 30333 

Phone: 404-639-1906 

Fax: 404-639-1950 

E-mail: AEE2@cdc.gov

Kimberly Field 

President NTCA, TB Controller 

Washington State Department of Health 

Services - STD/TB Services 

P.O. Box 47837 

Olympia, WA 98504-7837 

Phone: 360-236-3447 

Fax: 360-236-3470 

E-mail: kim.field@doh.wa.gov

Hsin-Hsin Foo, MPH 

ASPH Fellow 

Centers for Disease Control and Prevention 

Division of TB Elimination, CEBSB 

1600 Clifton Road, NE, Mailstop E-10 

Atlanta, GA 30333 

Phone: 404-639-8337 

Fax: 404-639-8960 

E-mail: Hdf9@cdc.gov
123 

Maria Fraire, MPH, CHES 

Lead Health Education Specialist 

Centers for Disease Control and Prevention 

Division of TB Elimination, CEBSB 

1600 Clifton Road, NE, Mailstop E-10 

Atlanta, GA 30333 

Phone: 404-639-5317 

Fax: 404-639-8960 

E-mail: Mff8@cdc.gov

Victoria Gammino, PhD, MPH 

EIS Officer 

Centers for Disease Control and Prevention 

Division of TB Elimination, SEOIB 

1600 Clifton Road, NE, Mailstop E-10 

Atlanta, GA 30333 

Phone: 404-639-1572 

Fax: 404-639-8959 

E-mail: Vmg0@cdc.gov

Deliana Garcia, MA 

Director, International Research and 

Development 

Migrant Clinicians Network 

P.O. Box 164285 

Austin, TX 78716 

Phone: 512-327-2017 

Fax: 512-327-0719 

E-mail: dgarcia@migrantclinician.org

Judy Gibson, MSN, RN 

Nurse Consultant 

Centers for Disease Control and Prevention 

Division of TB Elimination, FSEB 

1600 Clifton Road, NE, Mailstop E-10 

Atlanta, GA 30333 

Phone: 404-639-5322 

Fax: 404-639-8958 

E-mail: Jsd0@cdc.gov

Stefan Goldberg, MD 

Medical Officer 

Centers for Disease Control and Prevention 

Division of TB Elimination, CHSRB 

1600 Clifton Road, NE, Mailstop E-10 

Atlanta, GA 30333 

Phone: 404-639-8123 

Fax: 404-639-8961 

E-mail: SSG3@cdc.gov

Greg Guest, PhD 

Senior Research Associate 

Family Health International 

2224E NC Highway 54 

Durham, NC 27713 

Phone: 919-544-7040 

Fax: 919-544-7261 

E-mail: Gguest@fhi.org

Theodore (Ted) Hammett, PhD 

Vice President 

Abt Associates, Inc. 

55 Wheeler Street 

Cambridge, MA 02138 

Phone: 617-349-2734 

Fax: 617-349-2497 

E-mail: Ted_Hammett@abtassoc.com

Yael Hirsch-Moverman, MS, MPH 

Epidemiologist 

Charles P. Felton National TB Center at 

Harlem Hospital 

2238 Fifth Avenue, Room 163 

New York, NY 10037 

Phone: 212-939-8240 

Fax: 212-939-8259 

E-mail: Yh154@columbia.edu

Harold Jaffe, MD 

Director 

National Center for HIV, STD, and TB 

Prevention 

1600 Clifton Road, NE, Mailstop E-7 

Atlanta, GA 30333 

Phone: 404-639-8000 

Fax: 404-639-8600 

E-mail: Hwj1@cdc.gov

Nikki Johnson, LSW 

Social Services Provider 

Georgia Department of Human Resources – 

TB Program 

2 Peachtree Street, NW, 12th Floor 

Atlanta, GA 30303 

Phone: 404-656-6254 

Fax: 404-463-3460 

E-mail: njohnson@dhr.state.ga
124 

Heather Joseph, MPH 

Health Scientist 

Centers for Disease Control and Prevention 

Division of TB Elimination, CHSRB 

1600 Clifton Road, NE, Mailstop -10 

Atlanta, GA 30333 

Phone: 404-639-2636 

Fax: 404-639-8961 

E-mail: Hbj7@cdc.gov

Elizabeth Kalayil, MPH 

ASPH Fellow 

Centers for Disease Control and Prevention 

Division of TB Elimination, CEBSB 

1600 Clifton Road, NE, Atlanta, GA 30333 

Phone: 404-639-6469 

Fax: 404-639-8960 

E-mail: Ehk2@cdc.gov

Masae Kawamura, MD 

ACET Chairperson 

Director, TB Control Section 

San Francisco Department of Public Health TB 

Clinic, Ward 94 

San Francisco General Hospital 

1001 Potrero Avenue 

San Francisco, CA 94110 

Phone: 415-206-8524 

Fax: 415-648-8369 

E-mail: Masae_kawamura@sfgh.org

Amera Khan, MPH 

Health Education Specialist 

Centers for Disease Control and Prevention 

Division of TB Elimination, CEBSB 

1600 Clifton Road, NE, Mailstop E-10 

Atlanta, GA 30333 

Phone: 404-639-6428 

Fax: 404-639-8960 

E-mail: AJK5@cdc.gov

Kathleen Kolaski, MSN 

Nurse Consultant 

Georgia Department of Human Resources – 

TB Program 

2 Peachtree Street, NW 

Atlanta, GA 30303 

Phone: 404-656-6250 

Fax: 404-463-3460 

E-mail: kokolaski@dhr.state.ga.us

Kayla Laserson, ScD 

Team Leader 

Centers for Disease Control and Prevention 

Division of TB Elimination, IRPB 

1600 Clifton Road, NE, Mailstop E-10 

Atlanta, GA 30333 

Phone: 404-639-5334 

Fax: 404-639-1556 

E-mail: Kel4@cdc.gov

 

Brandon Long, MPH 

Consultant 

Abt Associates, Inc. 

26 Cordis Street, #2 

Charlestown, MA 02129 

Phone: 617-241-8343 

E-mail: Blong777@yahoo.com

Joan Mangan, PhD, MST 

Educational Research Consultant 

Gorgas TB Initiative 

1665 University Boulevard 

Ryals Bldg., Suite 217 

Birmingham, AL 35294-0022 

Phone: 205-934-1752 

Fax: 205-934-1746 

E-mail: jmangan@ms.soph.uab.edu

Suzanne Marks, MPH, MA 

Senior Epidemiologist 

Centers for Disease Control and Prevention 

Division of TB Elimination, CHSRB 

1600 Clifton Road, NE, Atlanta, GA 30333 

Phone: 404-639-5343 

Fax: 404-639-8961 

E-mail: Sqm3@cdc.gov

Holly Massett, PhD 

Senior Research Scientist 

RTI International 

1615 M. Street, NW, Suite 740 

Washington, DC 20036 

Phone: 202-728-2472 

Fax: 202-728-2095 

E-mail: hmassett@rti.org
125 

Kelly McCarrier, MPH 

ASPH Fellow 

Centers for Disease Control and Prevention 

Division of TB Elimination, CHSRB 

1600 Clifton Road, NE, Mailstop E-10 

Atlanta, GA 30333 

Phone: 404-639-8415 

Fax: 404-639-8961 

E-mail: Bke4@cdc.gov

Scott McCoy, MEd, Eds 

Health Education Specialist 

Centers for Disease Control and Prevention 

Division of TB Elimination, CEBSB 

1600 Clifton Road, NE, Mailstop E-10 

Atlanta, GA 30333 

Phone: 404-639-8992 

Fax: 404-639-8960 

E-mail: Smccoy1@cdc.gov

Shawna Mercer, PhD 

Health Scientist 

Centers for Disease Control and Prevention 

Public Health Practice Program Office, OD 

1600 Clifton Road, NE, Mailstop K-56 

Atlanta, GA 30333 

Phone: 770-488-8475 

Fax: 770-488-8200 

E-mail: ZHI5@cdc.gov

Jane Mezoff, DrPH 

Behavioral Scientist 

Centers for Disease Control and Prevention 

Division of TB Elimination, CEBSB 

1600 Clifton Road, NE, Atlanta, GA 30333 

Phone: 404-639-8043 

Fax: 404-639-8960 

E-mail: Jsm0@cdc.gov

Donald Morisky, ScD., M.S.P.H., Sc.M. 

Professor 

UCLA School of Public Health 

Department of Community Health Sciences 

650 Charles E. Young Drive South 

Los Angeles, CA 90095-1772 

Phone: 310-825-8508 

Fax: 310-794-1805 

E-mail: dmorisky@ucla.edu

Lauren Moschetta, MA 

Health Educator 

NJMS National TB Center 

225 Warren Street, 1st Floor, West Wing 

Newark, NJ 07101 

Phone: 973-972-1261 

Fax: 973-972-1064 

E-mail: Moschelb@umdnj.edu

Mark Nichter, PhD, MPH 

Professor 

University of Arizona 

Department of Anthropology, Haury Bldg. 

Tucson, AZ 85716 

Phone: 520-621-2665 

Fax: 520-621-2088 

E-mail: mnichter@u.arizona.edu

Rick O’Brien, MD 

Chief, Clinical and Health Systems Research 

Branch 

Division of TB Elimination 

1600 Clifton Road, NE, Mailstop E-10 

Atlanta, GA 30333 

Phone: 404-639-8123 

Fax: 404-639-8961 

E-mail: Rjo1@cdc.gov

Jessica Ogden, PhD 

Technical Specialist 

International Center for Research on Women 

1717 Massachusetts Avenue, NW 

Suite 302 

Washington, DC 20036 

Phone: 202-797-0007 

Fax: 202-797-0020 

E-mail: jogden@icrw.org

Alawode Oladele, MD, MPH 

Medical Director, TB & Refugee Health 

DeKalb County Board of Health 

445 Winn Way, Suite 150 

Decatur, GA 30030 

Phone: 404-294-3768 

Fax: 404-491-8655 

E-mail: axoladele@gdph.state.ga.us
126 

Kathryn O’Toole, MBA 

Associate Director of Management and 

Operations 

Division of TB Elimination 

Centers for Disease Control and Prevention 

1600 Clifton Road, NE, Mailstop E-10 

Atlanta, GA 30333 

Phone: 404-639-8120 

Fax: 404-639-8604 

E-mail: Keh3@cdc.gov

Marian Passannante, PhD 

Associate Professor 

UMDNJ Medical School & National TB 

Center, Department of Preventive Medicine & 

Community Health 

185 South Orange Avenue, MSB F588 

Newark, NJ 07103 

Phone: 973-972-4775 

Fax: 973-972-7625 

E-mail: passanna@umdnj.edu

Paul Poppe 

Deputy Director 

Division of TB Elimination 

Centers for Disease Control and Prevention 

1600 Clifton Road, NE, Mailstop E-10 

Atlanta, GA 30333 

Phone: 404-639-8120 

Fax: 404-639-8604 

E-mail: Pop1@cdc.gov

Carol Pozsik, RN, MPH 

Director, TB Control Division 

South Carolina Department of Health & 

Environmental Control 

1751 Calhoun Street 

Columbia, SC 29201 

Phone: 803-898-0539 

Fax: 803-898-0685 

E-mail: pozsikcj@dhec.sc.gov

Noreen Qualls, DrPH 

Lead Health Scientist 

Centers for Disease Control and Prevention 

Division of TB Elimination, CHSRB 

1600 Clifton Road, NE, Mailstop E-10 

Atlanta, GA 30333 

Phone: 404-639-8195 

Fax: 404-639-8961 

E-mail: NLQ0@cdc.gov

Cathy Rawls, MPH, CHES 

ASPH Fellow 

Division of TB Elimination, CEBSB 

Centers for Disease Control and Prevention 

1600 Clifton Road, NE, Mailstop E-10 

Atlanta, GA 30333 

Phone: 404-639-6291 

Fax: 404-639-8960 

E-mail: Cvr8@cdc.gov

Alyssa Robillard, PhD 

Senior Associate 

Rollins School of Public Health-Emory 

University 

1518 Clifton Road NE, Room 546 

Atlanta, GA 30322 

Phone: 404-727-9823 

Fax: 404-727-1369 

E-mail: arobill@sph.emory.edu

Ximena Urrutia-Rojas, Dr.PH 

Assistant Professor, Department of Social and 

Behavioral Sciences 

University of North Texas Health Science 

Center, School of Public Health 

3500 Camp Bowie Boulevard 

Fort Worth, TX 76107-2699 

Phone: 817-735-0325 

Fax: 817-735-0255 

E-mail: xurrutia@hsc.unt.edu

Rachel Royce, PhD, MPH 

Senior Research Epidemiologist 

Research Triangle Institute 

P.O. Box 12194 

Research Triangle Park, NC 27709-2194 

Phone: 919-485-5649 

Fax: 919-541-7384 

E-mail: rroyce@rti.org

Robin Shrestha-Kuwahara, MPH 

Behavioral Scientist 

Division of TB Elimination, CHSRB 

Centers for Disease Control and Prevention 

1600 Clifton Road, NE, Mailstop E-10 

Atlanta, GA 30333 

Phone: 404-639-8314 

Fax: 404-639-8961 

E-mail: Rbk5@cdc.gov
127 

Esther Sumartojo, PhD, MSc 

Deputy Associate Director for Science and 

Public Health 

National Center on Birth Defects and 

Developmental Disabilities 

Centers for Disease Control and Prevention 

1600 Clifton Road, NE, Mailstop E-87 

Atlanta, GA 30333 

Phone: 404-498-3072 

Fax: 404-498-3070 

E-mail: esumartojo@cdc.gov

Wanda Walton, PhD 

Chief, Communications, Education, and 

Behavioral Studies Branch 

Division of TB Elimination 

Centers for Disease Control and Prevention 

1600 Clifton Road, NE, Mailstop E-10 

Atlanta, GA 30333 

Phone: 404-639-8319 

Fax: 404-639-8960 

E-mail: Wxw2@cdc.gov

Charles Wells, MD 

Chief, International Research and Programs 

Branch 

Division of TB Elimination 

Centers for Disease Control and Prevention 

1600 Clifton Road, NE, Mailstop E-10 

Atlanta, GA 30333 

Phone: 404-639-8120 

Fax: 404-639-1566 

E-mail: CCW2@cdc.gov

Mary Castle White, PhD, MPH 

Professor 

University of California, San Francisco 

2 Koret Way, School of Nursing 

Box 0608 

San Francisco, CA 94143-0608 

Phone: 415-476-5213 

Fax: 415-476-6042 

E-mail: mcwhite@itsa.ucsf.edu

Maureen Wilce, MS 

Behavioral Scientist 

Centers for Disease Control and Prevention 

Division of TB Elimination, FSEB 

1600 Clifton Road, NE, Mailstop E-10 

Atlanta, GA 30333 

Phone: 404-639-5330 

Fax: 404-639-8958 

E-mail: MUW9@cdc.gov
128 

Appendix E: References 

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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. 

Centers for Disease Control and Prevention. Reported Tuberculosis in the United States, 2002. 

Atlanta, GA: U.S. Department of Health and Human Services, CDC, Sept 2003. 

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/funding/definition.html

Racial Disparities in Tuberculosis - Selected Southeastern States, 1991–2002; 

MMWR; 2004: 53. No. 25. 

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: JosseyBass, 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. 

The United States Census Bureau. The Health Insurance Coverage: 2002 page. 

Available at http://www.census.gov/
129