Tuberculosis (TB), a leading infectious killer worldwide, poses a significant challenge in India, where many patients suffer from multiple chronic conditions. Despite global efforts to integrate TB care, India's National TB Elimination Program (NTEP) lacks comprehensive protocols for managing TB multimorbidity. This study explores the perspectives of patients, caregivers, and healthcare providers on health literacy and its role in navigating TB multimorbidity management.
The Need for Improved Health Literacy in TB Multimorbidity
TB multimorbidity, the coexistence of TB with other chronic diseases, is often overlooked in health programs. Limited health literacy acts as a barrier to effective healthcare, leading to low medication adherence and increased hospitalization risks. In India, TB patients with diabetes, hypertension, and HIV face fragmented care and variable health literacy levels.
Addressing the Gaps in Health Literacy
The study highlights the importance of going beyond individual-level health literacy to capture the perspectives of all stakeholders. It aims to identify actionable insights to improve policy and practice, such as developing multilingual and pictorial information tools, training healthcare providers in health literacy, and enhancing communication and system navigation.
Qualitative Study Design and Approach
The study employed a qualitative design using a phenomenological approach to capture the experiences and perspectives of patients and healthcare providers in natural settings. This method allowed for a deeper understanding of the challenges and roles of stakeholders without imposing preconceived theories.
Study Settings and Participants
The study was conducted in the Khurdha district of Odisha, India, focusing on areas with high TB burden and low health literacy. Participants included TB patients with and without multimorbidity, as well as healthcare providers such as community health workers and physicians.
Data Collection and Analysis
In-depth interviews and key informant interviews were conducted in the local language (Odia) using an open-ended interview guide. The digitally recorded interviews were transcribed, translated into English, and analyzed using thematic framework analysis. The research team ensured trustworthiness by covering diverse disciplinary backgrounds and using multiple sources of information.
Results and Themes
The study identified five key themes:
Accessibility of Information and Communication Gaps: Healthcare providers recognize the importance of effective communication in managing TB multimorbidity. However, current IEC materials primarily focus on TB, neglecting comorbidities. Patients with TB multimorbidity struggle to manage multiple medications and often rely on peers or family for information.
Patients' Understanding of TB-Multimorbidity Care Information: Patients face challenges in understanding complex medical information due to communication gaps and cultural barriers. Healthcare providers need regular training on communication skills and culturally sensitive approaches.
Appraisal of Information on TB-Multimorbidity Management: Patients with higher health literacy often encounter conflicting health information, while those with lower literacy rely on providers or peers for guidance. Healthcare providers should routinely verify patients' information sources and direct them to credible resources.
Application of Information on Decision-Making: Patients' literacy levels influence their decision-making and empowerment in TB multimorbidity management. Low-literate patients defer to healthcare providers, while high-literate patients actively engage in treatment choices.
Navigating the Healthcare System: Patients face significant challenges in navigating a fragmented healthcare system, especially when dealing with multiple health conditions. Healthcare providers suggest training community health workers to guide patients and reduce the burden on tertiary care settings.
Discussion and Recommendations
The study highlights the critical role of health literacy in TB multimorbidity management, emphasizing the need for accessible information, patient understanding, decision-making support, and improved navigation of the healthcare system. Recommendations include creating user-friendly IEC materials for TB and comorbidities, integrating NTEP with NCD programs, and providing culturally responsive and regionally relevant resources.
Conclusion
This study presents a health-literacy-driven framework for TB multimorbidity management in India, aiming to improve uptake, adherence, and coordinated care. By addressing information accessibility, patient understanding, and system navigation, India can enhance its TB elimination efforts and provide better care for patients with TB multimorbidity.
