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Materials > The Tuberculosis Behavioral
and Social Science Research Forum Proceedings > Appendix
C
The Tuberculosis Behavioral and Social Science Research Forum
Proceedings
Appendix C: TB Behavioral and Social Science Research
Gaps and Needs: Major Research Topics, Subtopics, and Research Questions
Major Research Topics, Subtopics, and Research
Questions
V. Community
Influences that are community-related affect behavior on both small
and large-group levels, such as those in community settings. Examples
include influences of family and social networks on individuals,
the relationship between local health services and individuals and
communities, and the impact of social stigma of TB on groups.
A. Impact of TB services on communities and patients
Whether defined by a geographic region, a common interest or shared
ethnic or cultural background, communities play an important role
in people’s lives. Because a community typically shares a set of
common interests and values and gains strength from this collective
entity, it is important for health care providers to understand
the communities they serve to effectively meet the community’s needs.
Developing a respectful, collaborative relationship with communities
may strengthen the delivery of health services and improve the general
health and well-being of communities as a whole.
Forum participants identified the need to determine the perceptions
of TB within communities and to understand the origins of those
perceptions and the influence of forces that affect people’s perceptions,
such as the media. Participants also expressed the need to develop
tailored, culturally-specific interventions to increase understanding
of TB and reduce the stigma associated with TB.
Participants across all groups discussed the need to determine
the optimal relationship between health departments and the local
communities they serve, as well as the role of community groups
like community-based physicians in increasing TB awareness and delivering
TB services. Suggestions were made to conduct more participatory
action research and to define and determine how local communities
can become involved in locally driven research.
1. Influences of family and social networks
Family groups and social networks have been shown to be extremely
influential on many different health outcomes. In terms of TB outcomes,
this influence can manifest itself positively by facilitating or
supporting, for example, care-seeking, treatment adherence, and
other patient behaviors. Conversely in other cases, misconceptions
held by those close to individuals with TB can have negative effects
such as increasing the level of stigma attached to the disease resulting
in social ostracism or isolation. Furthermore, family units and
social networks are often adversely affected by the introduction
of TB and the consequent stressors into their networks. Successful
TB control efforts based on a strong understanding of these issues
may maximize the positive influences of social networks and minimize
disruptions to family and social networks.
Forum participants identified the need to better understand
the role of social networks on health behaviors and determine strategies
for strengthening the positive influences of social networks. Specific
focus was given to identifying ways in which TB programs can work
with families to better understand and mitigate the impact of TB
services on social networks.
- How can we reach supporting populations to reduce fear of TB
transmission in households and worksites?
- How does TB affect families as a whole?
- How do we better educate the coworkers, friends, and relatives
of the TB patient? What messages do family members and others
need to accept and support the patient’s diagnosis?
- How can TB program staff integrate the families (including
extended family members) and the communities of TB patients into
the TB process of education, case identification, treatment, follow-up,
prevention, and re-integration into the job and community to prevent
stigma and discrimination?
- What are some ways to develop culturally sensitive and appropriate
strategies to educate families and coworkers and communities about
TB?
- What is the effect of family member influences, especially
women, on their family member’s health seeking behavior?
- How can TB programs assist and support female patients in fulfilling
their familial roles given their illness?
- How can social networks be involved in positive and facilitating
ways in a patient’s TB experiences?
- What are the community influences on health behaviors? What
is the impact of community health workers (peers) on treatment
initiation and completion?
- What is the role of social support in LTBI adherence in Latino
immigrants?
- What is the application of a social network framework to at-risk
TB populations?
- What is the relationship of the patient’s role models to effectively
completing TB treatment?
- Who are the best, most effective role models or opinion leaders
of high-risk patients?
2. Social stigma
Evidenced both in research and in practice, stigma associated with
TB appears to be universal. The consequences of stigma can be seen
affecting care-seeking behaviors, as persons have been known to
hesitate or choose not to disclose their TB status to family or
friends out of fear of being socially ostracized. Research has demonstrated
that in some cases, personal rejection occurs as a result of the
strong stigma surrounding TB. Stigma has also been shown to hinder
adherence to treatment. By identifying both the sources and consequences
of stigma, social science research has illustrated the need for
effective intervention strategies.
Social stigma was an issue raised in all of the breakout groups,
highlighting the shared perception of the need to better understand
its sources and identify effective ways to address it. During breakout
discussions, forum participants specifically noted the need to define
stigma from various perspectives, identify existing research to
understand the impact of stigma, and propose specific measures to
address and reduce stigma. Among these measures, it was suggested
to identify ways in which the public health community can alter
its presentation of epidemiologic data to avoid the perpetuation
of existing stigmatizations and to reinforce that TB is a curable
disease.
Proposed research questions focused on identifying the effects
or consequences of stigma on care seeking and adherence to treatment,
and determining whether certain populations or sub-populations are
adversely affected by stigma.
- How does stigma differ among different ethnic groups? How does
it vary with demographics? (Suggested methodologies include conducting
formative and quantitative research).
- How can stigma be reduced among certain groups? (Suggested
methodology is to provide massive education to those groups.)
- What are some ways to enhance the presentation of epidemiological
data in order to avoid stigmatization and to increase community
empowerment?
- What are some ways to avoid stigmatizing a community and to
avoid essentialism of TB stigma and discrimination?
- How can the families and the communities of TB patients be
integrated into the patient’s treatment, follow-up, and re-integration
into the job and community to prevent stigma and discrimination?
- How do we define “stigma” from the patient’s perspective? …The
provider’s perspective? …And the community’s perspective? Who
is the stigmatizer and why? (Suggested methods include the use
of focus groups and the Delphi technique)
- What are general community perceptions about TB and people
living with TB? Where do they derive their understandings? What,
if any, media influences exist that affect the community’s perceptions?
(Suggested methodologies include conducting surveys [e.g., mail
surveys] among university and high school students; and conducting
focus group discussions with church groups and other existing
community groups.)
- Are current conceptual frameworks (for understanding stigma)
adequate?
- o If “yes” to above, what frameworks (e.g., focus groups, interviews,
and surveys) can be used to collect research on providers and
patients?
- o If “no” to above, what formative research can be conducted
on the origins of TB stigma and its specific components?
- What survey research can we conduct in patient and provider
populations to assess discrimination, stigma, and treatment issues
among people with HIV/TB, as well as people with TB in the home
environment, community, and worksite?
- What are some ways to conduct an intervention study on the
impact of locally developed education and messaging within communities
on decreasing stigma?
- What are some ways to develop and test community based culturally
specific interventions to increase awareness and knowledge of
TB and to reduce stigma associated with treatment?
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