The Tuberculosis Behavioral and Social Science Research Forum Proceedings
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Section II. Presentations and Panel Discussions
Mark Nichter, Ph.D., M.P.H.
Professor, Department of Anthropology, University of Arizona
Day 1, Afternoon Session
Dr. Nichter led Forum participants in a group discussion of themes that emerged during the first day of the Forum. The following is a summary of the main themes and issues discussed.
The group recognized the importance both of addressing the needs of TB patients, as well as overcoming the barriers to meeting those needs. More research is needed to gather patients’ perspectives on the following topics:
- The value patients place on their health;
- The continuum of patient needs, including social needs and access to medications;
- Patients’ negative opinions about TB treatment;
- Patients’ mistrust of government agencies as a barrier to TB treatment; and
- The tradeoff between long-term benefits of taking TB medications and possible short-term drawbacks, such as unpleasant side effects.
Some underlying patient needs such as family support, housing, and financial assistance are well documented, but policy makers and funders must be convinced that addressing these needs may be critical to patient adherence to TB regimens. Families of TB patients can play either positive or negative roles in TB treatment. Supportive families may be especially important for adolescents and some ethnic groups.
Standardized and tailored approaches to working with TB patients must be balanced. Adherence to standardized TB treatment protocols is extremely important, but tailored interventions that meet patients’ individual needs may be required to facilitate such adherence.
More research should focus on identifying and understanding the needs of TB providers in areas such as adherence to guidelines and reimbursement for insured services. Providers also need more education and training on dealing with patients’ emotional issues.
Building trust between patients and providers requires early and ongoing attention. If treated with respect and sensitivity, clients who may initially be considered challenging often develop good relationships with clinicians. If a provider has undue suspicions of a patient or has assumptions about patient non-adherence, these may present additional barriers to working with TB patients.
Directly observed therapy programs
Participants discussed the strengths and limitations of DOT programs. Suggestions for improving these models included the following:
- Comparison of home-based and clinic-based DOT models based on patients’ needs;
- DOT programs designed to address issues of TB-related stigma in work and home environments;
- Cost-effectiveness research comparing home- and clinic-based DOT models;
- Research to identify the characteristics of subpopulations and patients for whom DOT is particularly effective; and
- Research on the sustainability and educational and cultural appropriateness of different DOT approaches with diverse populations.
Health care systems
Standard TB treatment protocols are needed in health care settings.
Additionally, TB control programs need capacity building to prepare
for new developments and trends, such as the increasing diversity
of populations affected by TB and the programs needed to reach varying
Additional challenges for health systems involve the image and reputation of health departments and many patients’ mistrust of systems and the medications they provide. In particular, there is a need for better understanding of gender differences in seeking health services. Other health care systems issues that were discussed include the interactions between public health and private providers, and also those between different health care programs and services, e.g., the interaction between TB programs and HIV programs.
Policy makers have extremely important roles to play in the development and support of TB programs. As they make decisions about programs, policy makers should be encouraged to address the following issues:
- TB education needs among patients, providers, and communities at large;
- Underlying socioeconomic and cultural factors contributing to TB and influencing responses to TB programs;
- Health insurance needs and problems associated with various insurance plans;
- Funding and other resources needed to support and sustain effective TB programs; and
- Disparities in TB rates among different populations.