The Tuberculosis Behavioral and Social Science Research Forum Proceedings
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Section II. Presentations and Panel Discussions
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 families’ 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 family’s 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 didn’t use that specific term. At first, they felt that the outreach workers’ 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 patients’ 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.