Empowering community health workers as local and national tuberculosis champions in South Africa using participatory action research: insights from the UseMyVoice project

While community health workers (CHWs) have important contributions to offer the South African health system and tuberculosis (TB) response, their expertise has been insufficiently valued in quality improvement and policy development processes. Realizing the full benefits of CHWs require community systems for health that are responsive to their needs, however, important gaps remain in our knowledge of how to achieve this. In this Lessons and Experiences article, we describe our experiences and reflections from applying a participatory action research (PAR) framework to empower CHWs in a rural, underserved setting as champions in the South African TB response. Using two action-reflection cycles, this civil society initiative surfaced CHWs perspectives on local TB care, provided spaces for collaboration through dialogue, enabled co-developing innovative actions responding to identified gaps, and strengthened CHWs capacity to engage in collective advocacy for strengthening their role in the national response. CHWs champions identified TB stigma as an under addressed local TB challenge, and identified inadequate training, occupational hazards and unfair remuneration as key impediments to their effectiveness as CHWs. Community theatre productions and multi-pronged advocacy campaigns helped create conditions that led to changes in services at their local clinic, provincial CHWs employment policy, and support from national policymakers. We identified key lessons and recommendations on four common participatory research challenges that can inform future applications of PAR for CHWs empowerment. First, time and reflexivity discussions promoted trust. Second, we supported emancipatory power development through capacity-strengthening, building networks, developing accessible materials on CHWs policy, and harnessing momentum from shorter-term actions towards higher-impact actions. Third, we challenged narrow definitions of scalability that prioritize replicating outputs of CHWs labour without power-shifting engagements. Fourth, CHWs participation barriers (e.g. language and technology) exacerbated by the COVID-19 pandemic necessitated multiple options for engagement. This work demonstrates how PAR can lead to innovative actions addressing local care barriers and national workforce challenges by leveraging relationship-building, reflexive engagement, emancipatory power dimensions, resisting extractive norms and adapting to challenges.