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Section III. Results of Breakout Groups Sessions

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.

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.

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., 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.

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.

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.

  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.

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 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 (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.

    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.

    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 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
    1. 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.
       

    2. 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.
       

    3. 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.
       

    4. 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.
       

    5. 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.
       

    6. 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.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.
       

    7. 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.

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.
     

  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.

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/

 
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