Children affected by Tuberculous Meningitis (TBM) can require long-term care and rehabilitation beyond hospital discharge. However, many caregivers (particularly those living in rural areas with limited literacy and fewer resources) experience challenges in accessing, understanding, and applying medical guidance to support their child’s recovery at home.

To address these challenges, the Oxford University Clinical Research Unit (OUCRU) in Vietnam established a Community Advisory Board (CAB) for its paediatric TBM research programme. The CAB included 5–7 parents/caregivers of young children who were active trial participants. Parental/caregiver consent to participation in a CAB was obtained. . Parents/caregivers brought essential lived experience to the project, helping researchers understand how clinical information could be translated into accessible, respectful, and useful guidance for home care.

The objectives of the CAB were to gain deeper insight into caregivers’ needs and to co-develop an educational resource that would be relevant, easy to understand, and culturally appropriate. During two consultation meetings, CAB members openly shared their experiences and concerns about providing care after hospital discharge. These included uncertainty about rehabilitation activities, difficulty understanding written instructions, and limited access to informative resources.

Based on these insights, the research team and public engagement team collaborated with the CAB to create a short, engaging educational video. The video presents basic information about TBM and its sequelae, daily care routines, and practical strategies for home rehabilitation and care  to support recovery. The CAB was involved throughout the entire process from selecting the most useful content to reviewing drafts and ensuring the language and format were clear, inclusive and appropriate for the intended audience.

This participatory approach not only improved the quality and reach of the final product, but also empowered caregivers to take an active role in improving the care experience for others in similar situations. The video has since been shared with other families at TBM follow-up clinics and is currently being evaluated for broader implementation.

In addition to the co-creation process, we organised short patient-focussed workshops after each CAB meeting. These sessions, led by healthcare professionals, provided practical guidance on nutrition and ideas for play-based activities to support children’s physical and emotional development at home. This activity also helped CAB members feel that their participation brought direct benefits to their families, not just to future patients.

This session will share the development process, key lessons learned, and practical recommendations for establishing community advisory groups in resource-limited setting, especially in paediatric research contexts. We aim to demonstrate how meaningful community engagement can enhance the relevance, accessibility, and impact of health research communication while strengthening trust and partnership with affected families.

Read more about other Community Advisory Boards at OUCRU here.