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Materials > The Tuberculosis Behavioral
and Social Science Research Forum Proceedings > Descriptions
of Major TB Behavioral and Social Science Research Topics and Subtopics
Identified at the Forum
The Tuberculosis Behavioral and Social Science Research Forum
Proceedings
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
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- Special challenges of high risk settings/populations
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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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