OUCRU and the Hospital for Tropical Diseases (HTD) have led in the field of clinical trials for the treatment of central nervous system infections, such as bacterial meningitis, TB meningitis, and cryptococcal meningitis. These diseases have significant mortality rates associated with them, and the research focus has been on ‘saving lives’ through affordable and relevant treatments. However, as more lives are saved, and more people live with a disability, there is a need to understand how this impacts patients’ and caregivers’ lives, so they can be adequately prepared for discharge. ‘Continuity of care’ and early rehabilitation are key factors.

The BTH project started with the hypothesis that patients need more information pre-discharge to help them continue their recovery in the community. Through the project, we identified information needs, developed information resources, and initiated new avenues for collaboration and information sharing. Using our qualitative research findings as an evidence base, we undertook a number of participatory activities including theatre, photography, and workshop activities to raise awareness about challenges faced by patients and caregivers and to provide technical skills (physiotherapy, empathy, communication) to healthcare workers and coping skills to patients and caregivers.  We also developed training films to be shown on DVDs and the internet, as well as visual-based patient education material to share coping strategies, disease knowledge, and mental health advice, as well as a directory of services for patients disabled by a brain infection.