The Tuberculosis Behavioral and Social Science Research Forum
Appendix C: TB Behavioral and Social Science Research
Gaps and Needs: Major Research Topics, Subtopics, and Research Questions
Major Research Topics, Subtopics, and Research
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?
- 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,
- 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
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.
- 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
- 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
- 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
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.
- 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
- 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
- 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?
- 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
- 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
- What is the relationship between patient satisfaction with
the TB treatment process, structure, and system and TB treatment
- 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?
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
- 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
- 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
- Would frequent media production on TB prevention and stigma
increase TB awareness for government officials? African-American
- Can stigma be reduced through ad campaigns? (Suggested methods
include using various experimental designs)
- 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)
- 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
- 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).
- 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
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
- 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
- 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)?
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
- 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
- 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?
- 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
- 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
- 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?