Skin-neglected tropical diseases (NTDs) are a subgroup of NTDs with visible and often painful manifestations on the skin and are often associated with long-term disability, disfigurement, stigma, and socioeconomic disadvantage (1). NTDs comprise a group of 21 conditions caused by diverse pathogens—viruses, bacteria, parasites, fungi, and toxins—that predominantly affect impoverished communities in tropical and subtropical areas, leading to significant health, social, and economic burdens (2, 3). The Democratic Republic of Congo (DRC) is endemic for skin NTDs, including leprosy, lymphatic filariasis, and onchocerciasis (4–6). Access to NTD care has been challenging, catalysed by recent political and economic instability due to local conflicts that have weakened the health system and access to basic health services (7). This has been particularly felt in the Kasai Province, which, from 2016, had recent escalations of conflicts leading to prolonged ethnic tensions and isolated bouts of violence (8). This weakened health system and population migration due to the conflict has hindered the control, elimination, and surveillance efforts and the general progress of NTD programmes (9).

Skin NTDs’ association with stigma and discrimination, largely due to social perceptions, predisposes affected individuals to mental distress, reduced health-seeking, disease progression, and poor quality of life (10–13). Research conducted as part of priority-setting activities for this study revealed that many people affected by skin NTDs in the area experience disability, stigma, and discrimination, largely due to social perceptions of disease origins being linked to witchcraft (11, 14). Specifically, we found high symptom levels for major depressive disorders (67.3%), generalised anxiety disorders (57.6%), and suicidal thoughts (55.7%) amongst persons affected (14). In response, NTD programme partners and representatives from the DRC’s Ministry of Health identified the need to collaboratively address mental and psychosocial wellbeing needs of people affected by skin NTDs as an urgent priority.

In their guidance document “Mental health for people with neglected tropical diseases: towards a person-centred approach,” the World Health Organization (WHO) advocates for the use of community-led psychosocial interventions to support people with NTDs and/or mental health conditions (15). This is due to their potential to mobilise and strengthen pre-existing community capabilities alongside strengthening the primary healthcare system to: 1) identify mental health issues including depression and anxiety amongst people affected by NTDs; 2) reduce stigma and discrimination; 3) improve self-esteem, health knowledge, and health outcomes amongst people affected; and 4) support local empowerment by promoting local ownership of intervention components alongside vocational capacity strengthening (16–18). Recent studies have demonstrated the value of self-help groups as community-led psychosocial interventions for people affected by NTDs, particularly in addressing psychosocial distress, stigma, and social exclusion in low-resource settings (16, 17). Evidence from leprosy- and lymphatic filariasis-affected communities suggests that community-led self-help groups can improve psychosocial wellbeing, social participation, and collective agency when embedded within existing community structures and supported by health systems (18). However, much of the existing literature focusses on outcomes, with limited attention to how such self-help groups are operationalised in practice, particularly from a people-centred perspective.

People-centred health systems perspectives emphasise responsiveness to lived experiences, social contexts, and priorities of people affected, recognising them as active partners in care rather than passive recipients (19). This is particularly important in fragile and conflict-affected settings, where trust in formal health services may be limited. Recent guidance highlights that delivering mental health and psychosocial support through people-centred approaches within primary healthcare can enhance acceptability, equity, and sustainability of interventions whilst strengthening linkages between communities and health systems (19, 20).

In this article, we present the findings from a process evaluation of the development and implementation of such an intervention, called “Ditalala Dia Moyo” (Peace of Mind), with the aim to provide insights into the key building blocks necessary for the operationalisation of self-help group interventions that are designed to improve the mental health and psychosocial wellbeing of people affected.

The self-help groups were perceived as successful and acceptable as reflected in the positive feedback and the expansion of groups beyond the two initial groups. Improved mental health and wellbeing outcomes associated with participation in the self-help groups have been reported elsewhere (31) and are referred to here to contextualise the operationalisation process described in this study. Our findings highlight five interrelated elements which we call “building blocks,” central to person-centred operationalisation of self-help groups for people affected by skin NTDs in the DRC, as presented in Figure 3 and discussed in more detail below:

This study identified five interrelated “building blocks” that contribute to the operationalisation of people-centred community-led self-help groups for people with skin NTDs in the DRC: 1) relevant and actionable activities, 2) shared purpose, 3) inclusivity, 4) committed leadership, and 5) continuous capacity strengthening and support from research and implementing partners (Figure 3). The self-help groups were perceived as successful, as demonstrated by improvements in participants’ mental health and psychosocial well-being as reported elsewhere (31), strong community engagement, and replication beyond the initial implementation sites.

We believe engaging people affected by skin NTDs in the design and development of key components of the intervention (11) may have boosted the intrinsic motivation for people affected to want a positive change in their lives. Consistent with CBPR principles, community members were engaged as equitable partners throughout the research process, including collecting and interpreting photovoice data, presenting findings in participatory workshops, and co-leading the establishment of the self-help groups, which they subsequently led. This approach of co-creation and inclusion of community voices in the development and execution of health programmes aligns with the principles of CBPR, which centres the community as a unit of identity, builds community strength, and promotes co-learning and shared decision-making across all phases of the research process (21, 32, 33). Co-creating interventions with people directly affected has been seen to facilitate the realisation of intervention components (34).

A central strength of the self-help groups was their grounding in the lived experiences and priorities of people affected. The six core areas of focus, co-identified by group members, reflected the participants’ most pressing needs and aligned closely with their values. This grounding reflects key principles of a people-centred health systems perspective, in which care/interventions are shaped by the users’ lived experiences, priorities, and capacities, and people affected are positioned as active partners in designing and sustaining support mechanisms (19). In this sense, the self-help groups functioned not only as psychosocial interventions but as people-centred platforms embedded within community and primary healthcare contexts. Amongst the core areas of focus, peer counselling, self-care, and livelihood support emerged as particularly impactful, with direct impacts on their mental and psychosocial wellbeing and shaping person-centred care (35). We feel that these direct positive impacts may have also motivated them to keep applying knowledge and skills gained from being part of the groups. The inclusion of economic activities (soap making and farming) in our study was particularly useful for individual empowerment outcomes and to support the sustainability of groups, for example, through the pooled support funds described. This corroborates findings from other studies in low-resource settings that highlight the inclusion of economic activities and advancement to sustain self-help groups as important (36, 37). We have shown that it is feasible to integrate vocational capacity strengthening that is directed by the priorities of group members (e.g., soap making) with other self-help group activities. Community-led groups that include an element of livelihood capacity strengthening can distinguish self-help groups from those solely focused on the provision of self-care by having broader contributions to overall psychosocial wellbeing (16, 38). We recommend careful consideration of actionable activities that respond to users’ needs, to facilitate the implementation of self-help group activities and to contribute to their overall success.

Self-help groups are attractive to people with chronic diseases who seek emotional support and a sense of belonging through mutual understanding (39). They have been recognised as an important part of the continuum of care for chronic diseases such as diabetes (40, 41) and mental health services (42, 43). This is consistent with our study, where people affected by skin NTDs—often associated with disability, stigma, and mental health issues (11)—had an intrinsic drive to develop and maintain a common sense of purpose and comradeship within the self-help groups. This unity and mutual support, encapsulated in the naming of one group as “Bomoko” (“unity”), may have contributed to the emotional safety and collective efficacy of the groups, enabling members to both give and receive support in a context of mutual respect and shared experience.

Inclusivity was structurally embedded into the self-help group model, with adaptations made to ensure participation despite physical impairments. Role differentiation based on ability and experience, pairing of new with experienced members, and the option for family representation reflected a deep commitment to equity, accessibility, and acceptability and should be considered in future community-led self-help groups. These mechanisms allowed individuals with mobility or visual impairments to meaningfully contribute, demonstrating the potential for self-help groups to model disability-inclusive practices in low-resource settings. We believe that, again, these findings highlight the value of the CBPR approach in promoting inclusivity, people-centredness, and community empowerment and ownership for potential sustainability of intervention components (44, 45). We recommend such an approach for the design and implementation of future community-led self-help groups.

Leadership by peer-supporters was also central to the self-help groups’ functionality and success. These individuals not only initiated and coordinated core activities but also served as role models and facilitators within their communities. Their dual roles as beneficiaries and leaders enabled them to translate personal growth into group empowerment, thereby enhancing group ownership and the potential for sustainability. This aligns with existing evidence suggesting that people with lived experiences in leadership roles foster a sense of collective responsibility and a strong potential to build trust and provide a foundation for peer-to-peer support in community-based health interventions (46).

Capacity strengthening of peer-supporters on photovoice and group members on self-care and vocational training was perceived to have significantly contributed to participants’ capacity to execute key group activities. Photovoice has been shown to enhance participants’ self-awareness, critical thinking, and advocacy skills by enabling them to reflect on and communicate their lived experiences (47, 48). Training in BPS-N and the Look, Listen, Link process equipped peer-supporters and group members to be able to share thoughts and feelings with one another and initiate discussions during case findings and home visits. Our findings suggest that the integration of these tools within self-help group activities for skin NTDs is critical in enhancing the wellbeing of people affected. The BPS-N has been successfully implemented. These findings align with other studies in India, where BPS-N was successfully implemented to capacitate people affected by leprosy and their community members to provide basic mental health and wellbeing support to peers and to refer more complex cases (22, 23). Crucially, the support extended beyond training. The integration of community relay agents into self-help group meetings further bridged the gaps between people affected and broader health and social systems, enhancing trust and uptake of services. Engagement with the research team, implementing partners, and local health and governance structures facilitated access to resources, legitimacy, and responsiveness from the health system. This multilevel engagement is consistent with the systematic review by Wallerstein and colleagues, which found that CBPR approaches that engage multiple stakeholders lead to more sustainable and impactful health interventions (49).

This study was conducted involving people affected by selected skin NTDs—including lymphatic filariasis, onchocerciasis, Buruli ulcer, and leprosy. Whilst these conditions are endemic in the DRC, they do not represent the full spectrum of skin NTDs; therefore, the generalisability of our intervention should be interpreted with caution and considered in relation to specific local contexts. This evaluation could have been strengthened with the inclusion of the representatives from the satellite groups. This would have also given a picture of how self-help groups established by people affected themselves were made operational, with no direct support from the research team or implementing partners. Further research is also required to evaluate the self-help groups after withdrawal of project funding to evaluate sustainability and resilience. Linked to this, future studies could explore the potential of income-generating activities in driving the sustainability of the groups, informed by some of the challenges identified (e.g., transport and phone credit for group leaders). Whilst many studies evaluate the impact of self-help groups on the people involved, studies evaluating the functioning or operationality of self-help groups are rare. This study adds to this evidence gap by identifying five key factors defined as building blocks of people-centred self-help groups for skin NTDs. A further strength of this study was the innovative use of photovoice, not as an advocacy tool alone but as a participatory method to generate evidence of the functioning of peer support activities. This approach enabled people affected to document and reflect on change arising from the self-help groups in their own terms, reinforcing a people-centred evaluation of intervention processes. This evidence may be helpful in supporting other health systems in fragile or conflict-affected states to operationalise self-help group activities in a way that is user-led and in alignment with the WHO roadmap targets.

This is one of the first papers to illustrate how community-led self-help groups for people with skin NTDs were operationalised in Kasai Province, DRC, using a people-centred CBPR approach. The evidence presented demonstrates how CBPR can be used to design and deliver self-help groups, with a focus on the process. Operationalisation of self-help groups in a people-centred way requires an intersection of factors, including relevant group activities, shared purpose, inclusive and equitable participation, committed leadership, and continuous multilevel engagement of stakeholders for capacity strengthening and support.