Community co-design of contextually relevant rheumatic heart disease primary prevention

Primary prevention of rheumatic heart disease (RHD) is aimed at timely diagnosis and treatment of superficial Group A Streptococcal infections, most commonly Strep sore throat. However, uptake and delivery of primary prevention for RHD-endemic regions has room for improvement. Community co-design is an important aspect of intervention development to increase sustainability and reach.

Group-level assessment (GLA) sessions were used to understand the community's priorities and insights around sore throat. Personas, or user archetypes, were then developed to capture the behaviours and characteristics of diverse future users of primary prevention in the district. Finally, these personas were used in community design workshops to identify barriers and facilitators to potential interventions, generate creative solutions to overcome identified barriers and prioritise implementation models based on impact and feasibility. The final list of implementation strategies was presented by workshop participants to the broader community for additional validation and feedback.

The GLA sessions identified five priority areas: (1) need for improved access to care, closer to home; (2) importance of mothers as caregivers; (3) strong influence of community leaders; (4) importance of community health workers and (5) role of traditional providers and practices. Five personas were created, including: hands-on caregiver, restricted caregiver, removed family decision-maker, helpful neighbour and influential leader. Design workshops identified the highest-rated interventions as: decentralisation of care delivery into the community (strategy 1), use of community health workers as key implementing partners (strategy 2) and streamlining sore throat services at public healthcare facilities (strategy 3). Participants proposed potential practical applications of these interventions.

Community-based participatory research identified novel implementation strategies for an RHD primary prevention programme in Uganda. The value set and strategies developed in this study can now be used as guideposts to develop and test a package of implementation strategies for improving RHD primary prevention in Uganda.