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Section II. Presentations and Panel Discussion
Welcome Address: Opening Remarks
Welcome Address: Behavioral and Social Science Research in Tuberculosis Control
Keynote Session: When Sacred Cows Become the Tigerís Breakfast: Defining A Role for the Social Sciences in Tuberculosis Control
Keynote Session: Behavior, Society and Tuberculosis Control
Preliminary Results from the Tuberculosis Behavioral and Social Science Literature Review
Neighborhood Health Messengers: Using Local Knowledge, Trust, and Relationships to Create Culturally Effective Tuberculosis Education and Care for Immigrant and Refugee Families
Psychosocial, Social Structural, and Environmental Determinants of Tuberculosis Control
Community Perspectives in Tuberculosis Control and Elimination: The Personal Experiences of Patients and Providers Panel Discussion
Group Discussion of Themes and Issues from Day One
Breakout Group Sessions I: Identifying Research Gaps and Needs
Turning Research into Practice Panel Discussion
Sharpening the Focus on Turning Research into Practice: The Promise of Participatory Research Approaches
Two CDC Models from HIV Prevention: Replicating Effective Programs and Diffusion of Effective Behavioral Interventions
Effective Intervention for Asthma
Potential Funding Opportunities
Closing Remarks: Maintaining the Momentum on Development of a Tuberculosis Research Agenda
 
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The Tuberculosis Behavioral and Social Science Research Forum Proceedings

Section II. Presentations and Panel Discussions

DAY ONE

Community Perspectives in Tuberculosis Control and Elimination: The Personal Experiences of Patients and Providers Panel Discussion

Robin Shrestha-Kuwahara, M.P.H.
Behavioral Scientist, Clinical and Health Systems Research Branch, Division of Tuberculosis Elimination, Centers for Disease Control and Prevention

Representatives from DeKalb County and Fulton County Public Health Departments

Day 1, Morning Session

In this session, a panel of three TB patients and two TB outreach workers from local health departments in Georgia shared their personal experiences with and perspectives on TB treatment. The discussion was loosely structured to elicit the personal experiences that patients and outreach workers wished to highlight. Owing to this format, no slides or handouts were prepared. The following excerpts have been organized around the categories that emerged during the discussion.

Patient experiences and perspectives

Reactions to tuberculosis diagnosis

The patient panelists described their reactions and those of their family members to their being diagnosed with TB. Some patients talked of being initially shunned by their families and being asked to leave their homes. These patients understood that their familiesí responses were inappropriate and based on misinformation about TB transmission, but the rejection was nonetheless very painful to them. One patient brought up the denial that she initially felt upon being diagnosed with TB, but she emphasized how important her familyís support was and how they urged her to seek care.

Views of treatment and directly observed therapy

All of the patients reported believing that directly observed therapy (DOT) worked for them, although all three had some problems with it. Two of the patients experienced stigma owing to their TB illness, but didnít use that specific term. At first, they felt that the outreach workersí visits were intrusive and embarrassing. The patients also mentioned that the medications themselves tasted unpleasant and had some bad side effects. Overall, however, the patients felt that DOT helped them get through the treatment.

Supports and enablers for tuberculosis treatment

The patients mentioned several other factors besides DOT that assisted them during their course of treatment:

  • Assistance with basic needs such as housing, food vouchers, and other financial help;
  • Positive, trusting relationships with providers;
  • Faith in oneself;
  • Spiritual grounding; and
  • Support of family and friends.

Provider experiences and perspectives

Two outreach workers who provide DOT to TB patients also participated in the panel. Overall, they emphasized that patients have complex lives and problems; they need support and understanding to maintain adherence to TB medications and otherwise lead healthy lives. Key qualities for successful TB workers include patience, love of people, and a devotion to public health.

Challenges to tuberculosis care

The outreach workers listed the following challenges in working with TB patients:

  • Lengthy regimens that patients may desert once they are feeling better;
  • Failure of some patients to make appointments or otherwise comply with treatment;
  • Some patientsí suspicion that their whereabouts will be divulged by TB workers to immigration or law enforcement authorities; and
  • Common co-morbid conditions such as mental illness and substance use.

Key elements of effective tuberculosis care

The outreach workers discussed the following key elements for addressing the above challenges and generally meeting the needs of TB patients:

  • Nonjudgmental support and empathy for patients;
  • Incentives for adherence, such as food vouchers and transportation;
  • Clearly stated expectations regarding the treatment;
  • Motivation for adherence, such as the threat of multi drug-resistant TB; and
  • DOT, without which many patients would fail to complete their TB treatment.

 

 

 

 


Released October 2008
Centers for Disease Control and Prevention
National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention
Division of Tuberculosis Elimination - http://www.cdc.gov/tb

Please send comments/suggestions/requests to: hsttbwebteam@cdc.gov, or to
CDC/Division of Tuberculosis Elimination
Communications, Education, and Behavioral Studies Branch
1600 Clifton Rd., NE - Mailstop E-10, Atlanta, GA 30333