Exploring the value of community engagement activities within a participatory action research study to improve care for people affected by skin neglected tropical diseases in Liberia
Background: Skin Neglected Tropical Diseases (NTD) can impact physical and mental well-being for persons affected due to discrimination and stigmatisation, often leading to feelings of disempowerment. Community engagement is important for NTD work to foster advocacy and empowerment; however, there is limited literature surrounding best practices for community engagement within research focused on skin NTDs. REDRESS is a participatory action research study, aimed at reducing the burden of skin NTDs through a person-centred approach that emphasises community engagement. This study explores the value of community engagement within REDRESS for individuals and the impact on the health system’s ability to care for person’s affected by skin NTDs.
Methods: Through a naturalistic paradigm, eleven purposively selected in-depth interviews and 21 in-depth interviews with reflective diary participants were conducted in Liberia. Participants included peer-researchers, co-researchers, and dual role participants (Ministry of Health implementers and REDRESS researchers). Taking an inductive epistemological position, data was thematically analysed around a value creation framework that considers different cycles of value creation for communities such as potential, immediate and transformative value.
Results: This study revealed that REDRESS community engagement aligned with core UNICEF community engagement standards and identified seven themes relating to value creation cycles, participant position and enabling environments. Community engagement led to capacity building and collaboration, provided communities tools to make changes and share knowledge, and had transformative effects in trust and health seeking behaviours. The primary research revealed community engagement activities not seen elsewhere such as the involvement of persons affected as peer-researchers and communities taking part in project monitoring through keeping reflective diaries. Researchers’ local involvement facilitated processes that would not otherwise occur, such as speaking local dialects and policy discussions. Importantly, power dynamics are carefully considered in the process. Few challenges have been discussed directly related to REDRESS, but individual challenges related to dual role time management, external factors, and differences in agendas.
Conclusion: Community engagement activities led to meaningful empowerment, ownership, sustainability, and partnership formation leading to broader health outcomes. Five areas of opportunity were identified, and recommendations to strengthen community engagement include capacity building, clearer communication and addressing power imbalances.