The Tuberculosis Behavioral and Social Science Research Forum Proceedings
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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
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?