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. 2025 Mar 24;11(1):27.
doi: 10.1186/s40900-025-00695-2.

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

Maisy Lopez Piggott  1 , Zeela Zaizay  2 , Laura Dean  3 , Georgina Zawolo  4 , Coleen Parker  5 , Rosalind McCollum  3
Affiliations

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

Maisy Lopez Piggott et al. Res Involv Engagem. .

Abstract

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.

Keywords: Community engagement; Dual role researchers; Participatory research; Skin neglected tropical disease; Value creation.

Plain language summary

Skin neglected tropical diseases (NTDs) significantly impact physical and mental health, contributing to stigmatisation and social exclusion. REDRESS, a multidisciplinary participatory action research study focuses on strengthening care for people affected by skin NTDs in Liberia, through collaboration with persons affected and communities. To date, research on the role of community engagement in participatory action research studies seeking to improve care for persons affected by skin NTDs remains limited. In response, we consider the value of involvement within REDRESS for different communities, including people affected by skin NTDs. Interviews were conducted with eleven participants within REDRESS, including those with a dual role (ministry of health implementers and REDRESS researchers) alongside 21 in-depth interviews with participants who kept diaries reflecting their involvement within the study (affected individuals, formal and informal health providers). A framework looking at value creation from engagements was used to underpin this. We find that direct engagement with beneficiaries from REDRESS added positive value to the work. Communities learned new skills and collaborated with researchers, improving their trust in the health system and health seeking behaviours. The involvement of person’s affected by skin NTDs and local health workers as researchers was positive. However, challenges such as time management, unmet expectations, and external factors such as poor road conditions were noted. Working alongside communities empowered participants, regained control, and achieved broader health outcomes. Managing power dynamics in participatory studies is crucial, and to further strengthen engagement a focus on skill development, clear communication, and reducing power imbalances is essential.

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Conflict of interest statement

Declarations. Ethics approval and consent to participate: The qualitative research had ethical approval from the Liverpool School of Tropical (protocol ID 20-040) and the University of Liberia Institutional Review (UL-PIRE IRB) (protocol ID 20-09-233). All study participants provided written informed consent. Consent for publication: Not applicable. Competing interests: The authors declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
Schematic diagram of value creation cycles in communities, adapted from Wenger et al. (2011)
See this image and copyright information in PMC

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