Health literacy and cultural beliefs among family caregivers of tuberculosis patients in Semarang Indonesia

Family caregivers play a central role in tuberculosis (TB) treatment adherence and household-level infection prevention, yet their perspectives remain underexplored in TB programs. Health literacy is often assumed to enable effective caregiving; however, caregiving practices are also shaped by cultural norms, moral obligations, and health system interactions. This study explored how limited health literacy and cultural beliefs influence caregiving experiences among family caregivers of TB patients in Semarang, Indonesia. An exploratory qualitative study was conducted in an urban TB-endemic setting in Central Java. Five adult family caregivers of individuals undergoing treatment for drug-susceptible TB were purposively recruited. Data were collected through semi-structured, in-depth interviews conducted between April and May 2025. Interviews were audio-recorded, transcribed verbatim, and analyzed using inductive thematic analysis. Reflexive coding and constant comparison were applied to identify patterns across participants. Caregivers demonstrated limited health literacy across functional, interactive, and critical domains. While TB was widely recognized as a serious illness, understanding of transmission, household prevention, and treatment rationale was fragmented. Engagement with primary health care services was largely passive, characterized by compliance with instructions rather than dialogical interaction. Caregiving practices were strongly mediated by cultural beliefs and experiential knowledge, particularly Javanese norms emphasizing respect for elders, emotional harmony, and collective decision-making. Preventive measures were selectively applied or abandoned due to moral discomfort and fear of disrespecting older family members. Fear of transmission coexisted with uncertainty and resignation, resulting in individualized and sometimes contradictory prevention practices. Family caregiving for TB is shaped by intersecting limitations in health literacy, culturally embedded moral obligations, and structural constraints within PHC communication. Limited health literacy among caregivers does not reflect indifference but highlights gaps in caregiver-inclusive, culturally responsive engagement. TB programs should reposition family caregivers as active partners by integrating interactive, family-centered communication strategies that acknowledge cultural values and support contextual adaptation of biomedical guidance.