Indonesia faces a substantial burden of meningitis with significant mortality and neurological sequelae. Meningitis poses a major clinical challenge to health care workers (HCWs), as diagnosis is difficult, and outcomes are often poor. Despite the fact that many thousands die each year from meningitis, this severe disease is not generally recognized as a public health priority.
This project aims to understand the experiences and perceived barriers of meningitis patients and carers in terms of illness perception, health-seeking behaviour, access to health, clinical management, and sequelae. Then develop engagement activities for the general public, guided by the experiences of patients/carers, to improve knowledge and awareness of meningitis and ongoing research, and improve access and linkage to care.
33 participants, members of the Pelita Ilmu Foundation (an NGO which works with people with HIV), including HIV patients and social workers, joined this workshop.
The main topics we discussed were the experiences of patients with TB meningitis, and how families support people living with TBM and HIV. The participants actively asked questions and shared their thoughts and experiences during the session. They reported that they would like to have more workshops like this in the future.