Roles of community drug distributors in health and development activities post-onchocerciasis elimination in Uganda

1 Introduction

Among the neglected tropical diseases (NTDs), five are targeted for control or elimination using preventive chemotherapy (PC-NTDs): lymphatic filariasis, onchocerciasis, schistosomiasis, soil-transmitted helminthiases, and trachoma. Collectively, these PC-NTDs threaten over 1.5 billion people worldwide, accounting for millions of Disability-Adjusted Life Years (DALYs) lost to chronic pain, disfigurement, and irreversible blindness (1). To bridge gaps in healthcare access, community-based PC utilizes community drug distributors (CDDs) to deliver essential treatments. Volunteer CDDs serve as the linchpin of community-based mass drug administration (MDA). Their multifaceted role encompasses community mobilization, the promotion of disease knowledge and awareness, and the dissemination of treatment information. Furthermore, they are responsible for household registration, administering medication to eligible residents, and conducting mop-up interventions to address coverage gaps (2).

Onchocerciasis, commonly known as river blindness (RB), is one of the PC-NTDs. Efforts to eliminate onchocerciasis are based on MDA, the periodic distribution of preventive chemotherapy to eligible at-risk populations, for a minimum of 12 to 15 years, either in annual (3) or twice-yearly treatment approaches (4). The World Health Organization (WHO) 2021–2030 roadmap targets for onchocerciasis are to eliminate the need for MDA of ivermectin in at least one focus in 34 countries, in more than 50% of the population in at least 16 countries, and in the entire endemic population in at least 12 countries (5).

The CDD concept developed within the community-directed treatment with ivermectin (CDTI) approach of the African Program for Onchocerciasis Control (APOC) in the 1990s (6). Communities were empowered to select volunteers who would conduct censuses, mobilize community members, and deliver drugs, ensuring that all eligible individuals received treatment. CDTI led to a massive mobilization of volunteer workforces in onchocerciasis-endemic communities. Later, other NTD programs adopted the strategy of utilizing CDDs to deliver treatments under the supervision of primary healthcare systems and local organizations. As NTD programs evolved from single-disease vertical programs to integrated approaches at global, national, and community levels, the role of CDDs has become even more critical. These individuals are now responsible for delivering multiple drug combinations, maintaining complex reporting systems, and communicating regularly with their communities throughout the year (7).

After decades of MDA, several countries have reported interruption of onchocerciasis transmission in one or more transmission foci, allowing MDA to cease (8–11). The WHO reported that 25.5 million people were living in areas formerly endemic for onchocerciasis that had qualified to stop MDA by the end of 2024 (12).

In Uganda, vector control was initiated by the British to reduce the burden of onchocerciasis before Uganda gained independence in 1962. The National Onchocerciasis Control Programme (NOCP) was established in 1992 and, in 1993, adopted annual ivermectin MDA in affected communities as a control strategy. In 2007, the Ministry of Health (MoH) launched an onchocerciasis elimination policy, adopting semi-annual MDA and vector control/elimination as key strategies (13). By August 2024, onchocerciasis transmission was eliminated in 15 of the 17 original transmission foci and interrupted in one, with over 6 million Ugandans living in these areas no longer at risk of acquiring the disease. The remaining focus is suspected to have interrupted transmission, with MDA currently ongoing (14).

Understanding what activities CDDs undertook post-onchocerciasis elimination in Uganda is crucial as it provides vital insights into health system resiliency and community-level capacity. During active intervention phases, CDDs build substantial local trust and confidence, health literacy, and operational knowledge. Exploring their activities after treatments stop shows whether these valuable assets persist organically or if crucial community health capacity is lost without formal structural support. Furthermore, because a halt in drug distribution and vector control measures pose a risk of disease resurgence, documenting whether community-level mitigation behaviors continue post-treatment is essential for anticipating infection re-emergence and designing sustainable elimination strategies. Thus, assessing continued CDD involvement after MDA yields actionable guidance on how these vital community health workers can be repurposed for broader public health initiatives. This research is particularly important in light of reductions in global health funding support, demanding more innovative and cost-effective approaches. As more areas qualify to stop MDA, these former CDDs could prove a valuable resource for continued health activities.

There is limited documentation of the health service roles, if any, that the many former CDDs play following the cessation of MDA, whether in Uganda or globally. Most research on CDDs has focused on their role during active MDA campaigns for NTDs (15, 16). The primary objective of this paper is to discuss the roles of former CDDs following the elimination of onchocerciasis in former endemic foci in Uganda and to determine the factors that were associated with continued service in health-related activities.

2 Materials and methods

2.1 Study design

The study employed a mixed-methods concurrent triangulation design (17), integrating quantitative and qualitative data. A quantitative survey and qualitative focus group discussions (FGDs) were conducted concurrently. Subsequently, in-depth interviews (IDIs) were conducted with a subset of participants sampled from the initial survey and focus groups to deepen the analysis. In some of the sections qualitative data has been used to explain survey findings. Quantitative and qualitative data were integrated during the overall interpretation and synthesis phase to assess convergence in addressing the study objectives. In the results section, the findings from both modes are presented side-by-side, organized by the emergent themes.

2.2 Study areas

Onchocerciasis transmission foci eligible for this study were those where: 1) CDDs were used to deliver MDA as an intervention, 2) transmission was interrupted and MDA stopped, and 3) The Carter Center was the primary partner or one of the partners supporting all years of MDA delivery. The study was conducted in late 2023, and all 11 districts from the four foci that met these criteria were included (Mt. Elgon, Nyamugasani, Bwindi, and Nyagak-Bondo that stopped MDA in 2011, 2015, 2019, and 2019, respectively). A map of the study areas is provided as Figure 1.

2.3 Study population

Any former CDD was eligible for the quantitative survey. The qualitative study included CDDs, MoH officials, health care workers who worked with CDDs in the targeted foci, district officials [District Health Officers (DHOs), District Health Educators (DHEs), District Onchocerciasis Coordinators (DOCs), Local Council at the district level (LC5) Chief Administrative Officers (CAOs), Vector Control Officers (VCOs)], local council officials, and community members in formerly onchocerciasis-endemic areas.

2.4 Data collection techniques

The field team comprised 20 research assistants and four team leaders, all fluent in the local languages of the target districts in which they worked. Prior to deployment, a comprehensive two-day training session was conducted in Kampala covering qualitative and quantitative methodologies, research ethics, and data collection tool pretesting. Quantitative and qualitative data collection was executed by four teams, each consisting of one team leader and five research assistants assigned to each of the four study areas. The lead author and statistician provided overall technical guidance and oversight throughout the research process.

The coauthors collaborated to develop the data collection instruments based on the research objectives. The data collection instruments comprised a structured questionnaire, an FGD guide, a KII guide, and an IDI guide. These were each translated from English into the predominant local languages of the respective study foci: Lumasaba (Mt. Elgon Focus), Rukonzo (Nyamugasani Focus), Rukiga (Bwindi Focus), and Madi/Lugbara (Nyagak-Bondo Focus). The initial forward translation was conducted by a professional translation firm. To ensure accuracy and conceptual equivalence, four independent researchers who were blinded to the original English tools back-translated the instruments into English. Finally, local language-fluent research assistants assigned to each designated focus area reviewed and cross-checked any discrepancies between the original and back-translated versions to reach a final consensus prior to data collection.

Quantitative Survey: A survey was conducted with former CDDs, using a questionnaire uploaded on smartphones/tablets. The questionnaire was written in English and translated into the local languages of the sampled districts. Two individuals were interviewed by each of the 20 research assistants to pre-test the questionnaire before the survey was implemented. Minor changes were required after the pretest, specifically updating some skip patterns and deleting a question that was redundant. Team data collectors asked participants questions verbally and recorded their answers on the tablets. Many of the questions had binary response options, though some (e.g., those about educational status) necessitated additional categories. Participants typically required approximately 15 minutes to complete the survey.

Focus Group Discussions (FGDs): A total of 22 FGDs were conducted across 11 districts (two FGDs per district). CDDs were purposively selected and disaggregated by gender, resulting in one male and one female group per district, each comprising six participants. Discussions were facilitated using a semi-structured discussion guide. Each session was led by a moderator alongside a note-taker who managed audio recordings and recorded detailed observational notes to ensure data completeness. Participants were aged between 24 and 72 years, predominantly engaged in subsistence farming (about 4–5 of the 6 participants in all FGDs), and possessed educational backgrounds ranging from primary to secondary level. The demographic composition of the FGDs was similar across all districts.

In-Depth Interviews (IDIs): To capture detailed and unique perspectives, purposive sampling was used to recruit 33 CDDs from either the quantitative survey or FGDs who had presented particularly rich or peculiar narratives. Three IDIs were conducted per district.

Key Informant Interviews (KIIs): Purposive sampling was similarly employed for KIIs to target individuals with relevant subject-matter expertise. Key informants included national- and district-level stakeholders (e.g., District Health Officer [DHO], District Health Educator [DHE], District Vector Control Focal Persons, Local Council V Chairperson [LC5], and Chief Administrative Officer [CAO]), alongside lower-level local council officials and community members.

The qualitative tools had open-ended questions that included the timeline following the halt of onchocerciasis MDA, what volunteers did during the halt, the process of transitioning from CDD roles to Village Health Team (VHT) roles, training and engagement in health programs, past and present involvement in community health interventions, formal training received as CDDs, comparisons between past and current treatment programs, the personal benefits of volunteering, and perceived community-level impacts. Questions also assessed key drivers/motivators for continued voluntary service, operational challenges faced, and the perceived importance of their roles in the success of NTD programs. Finally, questions sought volunteer insights on strategies, experiences, and structural support needed to keep CDDs active across other community health and development initiatives. FGDs, IDIs, and KIIs typically lasted 60 to 90 minutes.

2.5 Sample size and respondent selection

We used Yamane’s 1967 formula to calculate the desired sample size for the quantitative survey, assuming a 95% response rate, and targeted a sample of 1,670 former CDDs (18). The survey was conducted across all four selected foci, encompassing 11 districts. Working with DOCs, in each district, 2 sub-counties (one rural and one urban) were randomly selected, and from each selected sub-county, two parishes were also randomly selected. The CDDs were randomly selected from the lists of former CDDs available in the parishes. To ensure adequate samples in each district, a disproportionate equal sample distribution was targeted, with the exception of Kasese. Since Kasese district had a limited number of CDDs (58), we targeted 50 CDDs for sampling. A sample of 162 CDDs was randomly selected from each of the other 10 districts to reach the target of 1,670 total. The sampling is therefore not representative of each district.

2.6 Data management and analysis

2.6.1 Quantitative survey

For the quantitative data, Kobocollect software was used to collect responses. This software was programmed on the tablets that were used by the research assistants to collect data. The quantitative data were analyzed using the Statistical Package for Social Sciences (SPSS) Version 25. Frequencies and cross-tabulations were produced to provide a general description of the respondents’ characteristics. Chi-squared tests were performed to assess the relationship between various categorical variables and outcomes of interest.

2.6.2 Qualitative data

Qualitative data management commenced with the transcription of audio recordings from FGDs, IDIs, and KIIs. All recordings from the 11 districts were transcribed verbatim and translated into English by fluent, bilingual research assistants of each designated focus area. Each focus area team leader randomly audited three English transcripts against the original audio recordings. Subsequently, independent bilingual reviewers cross-checked transcripts from each local language (Lumasaba, Rukonzo, Rukiga, and Madi/Lugbara) to confirm semantic accuracy and language appropriateness. Finally, every evening, the lead author conducted team debriefings to resolve linguistic discrepancies across focus areas and reach consensus on translated qualitative data prior to analysis.

Thematic content-analytical approaches to analyzing qualitative data involved an inductive, iterative coding process and category construction, reflecting participants’ experiences and knowledge. The coding process involved extracting themes, concepts, dimensions, and their interrelationships (19, 20). The lead author and the team leaders read through the transcripts to become familiar with the data and gain an overall understanding. Team leaders were selected from the pool of research assistants based on whether they had previous experience of working in such a leadership position.

During coding, we systematically read the transcripts, identifying key concepts and themes. We then assigned codes to relevant text segments to organize and analyze the data. Data were analyzed using a qualitative thematic content analysis approach following the steps below:

• generating “first order concepts” (i.e., data expressing informants’ terms and understandings);
• generating “second order themes” (i.e., abstract level themes and a larger narrative describing in theoretical terms); and
• identifying larger dimensions to help explain various themes suggested in the data (19).

Coded segments were then grouped into meaningful themes.

To ensure inter-coder reliability, the lead authors and two team leaders independently coded the transcripts. This analysis was conducted iteratively, beginning as soon as the lead author received the transcripts. The iterative process started when the lead author reviewed the initial transcripts. Transcripts were then distributed to co-authors for independent coding and verification. The research team conducted comparative analysis and refined emerging themes. Any discrepancies were discussed and adjusted accordingly. This iterative approach enabled rapid identification and refinement of key themes, ensuring the data’s relevance to the study. Quantitative surveys and FGDs occurred concurrently and were followed shortly thereafter by IDIs and KIIs. We analyzed the quantitative and qualitative data in two separate tracks initially. Integrated data from the quantitative survey, FGDs, IDIs, and KIIs were triangulated during the final analysis phase to validate and compare findings across different participant groups.

2.7 Ethical considerations

The study was approved by the Makerere University School of Social Sciences Research Ethics Committee (MAKSSREC) – No. 07.2023.689 – and the Uganda National Council for Science and Technology (UNCST, No. SS2021 ES). Administrative letters of support were obtained from the Chief Administrative Officers of the study districts.

Several procedures were used to protect the confidentiality of the participants. Participants were informed of confidentiality procedures during the consent process. A written consent form for each different data collection instrument type was administered before the commencement of the respective interview. Physical documents, such as signed consent forms and field notes, were maintained in locked cabinets at Makerere University. When audio recording was used (for all qualitative data collection), written consent was obtained from participants in the consent form before recording. Participants were informed that there were no physical risks associated with their participation in the study, that participation was voluntary and confidential, and that they were free to withdraw their participation at any time during the interview or discussion.

Quantitative surveys were completed in a private setting to avoid accidental exposure of any survey responses. Unique identifier codes were used rather than names to ensure participant confidentiality for responses to the quantitative survey. Additionally, all quantitative data was stored with encryption and password-protection.

With regard to protections for qualitative data, interviews were conducted only in a private setting, all interviewers were trained in research ethics with instructions about the importance of maintaining confidentiality, and names were not used on any transcripts from qualitative surveys. Qualitative data, including audio recordings and raw transcripts were de-identified. No names were tagged to the transcripts. The digital audio files and transcribed text were stored on encrypted, password-protected laptop accessible only to the primary research team.

3 Results

3.1 Socio-demographic characteristics of survey respondents

A total of 1,580 CDDs across the four foci participated in the quantitative survey: 413 (26%) from Bwindi, 649 (41%) from Mt. Elgon, 487 (31%) from Nyagak-Bondo, and 31 (2%) from Nyamugasani. This represented 95% of the targeted 1,670 responses, as some sampled parishes had fewer CDDs than estimated, but was within the expected values given the assumption of a 5% non-response rate in the sample size calculation. Basic characteristics of the study participants are presented by focus in Table 1 and by district in Supplemental File 1. More than two-thirds (71%) of the respondents were from rural areas, while 29% were from urban areas. Most respondents (56%) were male, while 44% were female. The mean age of respondents was 45.8 years; 61% were adults aged 36–59 years, with only 23% aged 36 or younger and 16% aged 60 or older. Nyagak-Bondo, where treatments stopped relatively recently in 2019, had younger CDDs (41% under age 36) compared to other foci (6 to 16% under age 36). Over half (56%) had attained primary education, and 42% had attained post-primary education. Most (79%) of the respondents were married or living with a partner when they began their CDD service; 19% had never been married. At the time of the survey, 90% were married or living with a partner, and only 2% had never been married. The primary occupation of survey respondents was agriculture (73%), followed by small-scale enterprises (6%). A small-scale enterprise (or small business) is a commercial operation characterized by a limited workforce, modest capital investment, and smaller revenue volumes compared to large corporations.

Table 1. Key socioeconomic and demographic characteristics of former community drug distributors in onchocerciasis foci of Uganda, 2024.

3.2 Proportion of former CDDs involved in other health- or development-related activities

The study determined the proportion of former CDDs involved in other health- or development-related activities and the various roles they played through the quantitative survey. Over half (56.3%) of former CDDs reported participating in community health or development services before serving as CDDs (Table 2). Kasese district, in the Nyamugasani focus, reported the highest pre-CDD involvement (80.6%), followed by Kanungu (68.8%) and Mbale (68.3%) districts in Bwindi and Mt. Elgon foci, respectively. The districts with CDDs that reported the lowest participation were Rubanda in the Bwindi focus (46.6%), Arua/Madi Okollo in the Nyagak-Bondo focus (47.0%), and Zombo in the Nyagak-Bondo focus (47.1%). Most CDDs had long periods of service, with 62% reporting 5 years or more, and the highest proportions of long-serving CDDs came from Kasese (100%), Kisoro (75.9%), and Rubanda (71.7%). Nearly all former CDDs said that their CDD service gave them skills to help them get a job (90.3%) and increased their interest in development or health work (94.2%).

Table 2. CDD community health history, opportunities, and activities by district and focus.

Of all survey respondents, 77.7% said they had an opportunity to perform additional health and development services since serving as a CDD, and nearly as many (70.6%) indicated that they had performed any health or development activity post-CDD service (Table 2).

During the IDIs and FGDs, CDDs gave specific examples:

“I worked in Health-Safe water, clean home, and good latrine maintain campaign within our community.” (IDI, Female, 35 years old, Zombo)

“At the village team, I was the only one who had studied so they saw that I would manage to do their work. That’s the reason I went back to volunteer, they community chose me to work for them.” (FGD, Male, 35 years old, Rubanda)

3.3 Health and development service activities performed since ivermectin treatments stopped

Those who said they had performed some kind of service after being a CDD during the quantitative survey were also asked what types of health and development service activities they had performed in their communities since ivermectin treatments stopped. Of the 1,115 who responded to the follow-up question, most (70.6%) reported performing other volunteer health-related activities, while 28% reported engaging in other volunteer development activities. Among the 11% who reported other services, they reported joining leadership roles such as Local Council chairpersons and distributing health-related drugs and mosquito nets, among others (Figure 2).

The most common post-CDD health and development activity reported by survey respondents was mosquito net distribution (66%), sanitation improvement programs (65%), and health education and community sensitization (64%). Other common activities included immunization (50%), distribution of other medications (48%), integrated community case management (iCCM, 41%), and family planning (34%) (Figure 3).

FGD and IDI participants echoed that the majority of former CDDs continued working in their communities as volunteers, and offered additional details on the types of activities they engaged in. Former CDDs across the four foci reported working with agencies such as the Ministry of Health/local facilities, as well as other partners such as Marie Stopes, the Korean International Cooperation Agency (KOICA), Save the Children, and Malaria Consortium. They worked on various health initiatives: distributing malaria drugs and nets, distributing cholera drugs, iCCM, educating and sensitizing communities on hygiene and sanitation, making referrals to health facilities, participating in immunization and treatment programs, training nutrition and child-care for under-fives, and mobilizing communities for family planning and other health programs other vital health initiatives. They reported mobilizing communities for outreach activities, such as the delivery of tuberculosis and human immunodeficiency virus (HIV) drugs, and making referrals for diseases that required proper diagnosis and management. They encouraged and referred pregnant mothers to health facilities for antenatal care and delivery services. Others gave health education on sexual and reproductive health, safe sex, and early pregnancies.

“I was taken up as a VHT. We sensitize communities on proper home hygiene. We had a problem of most children suffering from malnutrition and currently because of sensitization this reduced. Similarly for the adults there has been an improvement on individual health generally.” (FGD, female, 51 years old, Kisoro)

“We also sensitize pregnant women to go for antenatal care and deliver at hospitals. We write their names and follow-up and ensure they go for antenatal care and deliver at health facilities as a way of reducing maternal mortality.” (FGD, male, 52 years old, Kanungu)

“It is like training the communities about reduction of maternal mortality, reduce child mortality under five years, promotion of good hygiene and sanitation in communities, strengthening referral system partnership, that it; this referral is mostly of women when they are about to deliver. Maybe they have problems, you have to refer to like Bududa hospital. Those are part of the things which we are engaged in to train this side to go back and help our community members.” (IDI, Male, 65 years old, Bududa)

Outside health-related programs, some CDDs were involved in politics at the lower levels, such as in local council leadership. Using the community mobilization skills acquired during CDD training, they reported mobilizing communities for environmental conservation, poverty eradication, and other community development programs like gender-based violence.

“After the halt, I work with some organizations in Bugoma CTPH (Conservation Through Public Health), where we taught people about health. There is also a community health initiative on epidemic diseases, which teaches people about health and animal rearing. I also work as a community animal health worker. In case there are such animals, I treat them.” (FGD, Male, 57 years old, Kisoro)

Despite the challenges, former CDDs reported that they benefited from volunteer work. First, through the training programs they participated in, former CDDs reported expanding their knowledge and skills, as the training opened the door to new problem-solving techniques. Further, their role as service providers earned them enhanced community trust. Distributing vital medication and witnessing its positive impact cemented their reputation as reliable resources. Easy access to information and services improved their health and their families’ well-being. Their experience earned them greater respect, opening doors to participation in other programs. Additionally, a few mentioned that their social networks expanded; they met new people through community programs and fostered valuable connections. Increased knowledge and allowances were other motivations.

3.4 Reasons for CDD volunteer re-involvement

Qualitative research expanded on the reasons why CDDs returned to work as volunteers after MDA stopped. Three main thematic areas emerged, including Trust and Confidence, CDD Capacity/Expertise, and Community Commitment/Social Responsibility (Table 3).

Table 3. Thematic structure of qualitative analysis of former CDDs in Uganda.

Most volunteers indicated that they returned to other health and development services simply because they enjoyed their work. Others highlighted their previous experience as community health workers, emphasizing their familiarity with the system and their long-standing commitment as volunteers. Several were inspired by their colleagues in the health sector, while others were recommended for their outstanding contributions to their communities.

“The people in my community like my performance. So, when Raising Villages Project started work in our area the people selected me to work again as a volunteer. Having been chosen by my people I could not refuse.” (FGD, Female, 52 years old, Kisoro)

Some CDDs stated that they were motivated by the health benefits of the work they did, while others cited that community members appreciated their performance. Being recruited as VHTs was an important recognition for the former CDDs.

“So when the Mass Drug Administration stopped, we were called back to start doing other VHT work. That’s why we came to volunteer.” (FGD, Female VHT, 65 years, Nebbi)

“After stopping to work as CDD, I was chosen by people in my community to serve as a VHT. Since then up to now I have served as a VHT. I come here to this health facility once every three months, get medicine for deworming children and take it to be given or distributed to children in my village.” (IDI, Female, 55 year old, Kisoro)

The knowledge the former CDDs had acquired previously compelled them to return to work as volunteers. Obtaining raincoats and gum boots as VHTs to facilitate movement around the community simplified their work, and they felt they should continue volunteering. Other CDDs reported continuing to volunteer to gain more knowledge and experience, enabling them to participate in future interventions. Importantly, being selected by the community provides a level of social capital. CDDs are often viewed as “community doctors” or health experts, which can lead to increased influence in local governance. A case in point is in the Zombo district, where a district-level chairperson was a former CDD.

Evidence from FGDs and IDIs showed that the monetary facilitation CDDs received (2000–5000 UGX), though small, was another incentive for them to volunteer again. In Uganda, because CDDs are typically categorized as volunteers (rather than salaried employees) and often part of the Village Health Team (VHT) structure, their compensation is usually structured as facilitation for specific activities rather than a monthly wage. Some financial facilitation included training allowances, such as per diem or sitting allowances, for attending mandatory training workshops before the MDA campaign started. At times, they were given a modest transport allowance for drug collection or for attending sub-county-level planning meetings. However, they mentioned non-financial incentives such as bicycles to assist with long-distance distribution, branded gear such as T-shirts, bags with MoH/NTD logos, which provide official recognition and authority, among others. However, some of these incentives were not provided regularly.

“We were chosen to do voluntary work to help our people, but sometimes as we undertake some of the assigned activities. We are paid some allowances in form of money, currently we have been asked to have smart phones to be taken up for some engagements. Some of us who do not have smart phones are losing out and few own smart phones. We face problems of working in rain - with no rain coats, we also need to be facilitated with essential gadgets to do our work e.g., avail us with smart phones to enable VHTs do their work accordingly.” (FGD, Male, Kanungu)

FGD and IDI participants reported that what motivated most former CDDs to continue working as volunteers was mainly the confidence community members have in them, as they see the trust people have in CDDs and rely on them to help improve their lives, such as taking them to the hospital or giving advice. This created a powerful bond that fueled their drive to keep volunteering. Further, they reported building good relationships with those they help through volunteering, thus creating a sense of fulfillment.

“I see how people have confidence in and depend on me to help them to solve their problems. I can help take them to hospital and they get better. This also creates a good relationship with them, encouraging me to keep doing it.” (IDI, Kanungu)

Table 3 presents a sample of the thematic structure of the analysis of the qualitative data.

3.5 Factors associated with continued service in health-related activities by former CDDs

The study examined factors that were associated with continued service in health-related activities by former CDDs. Results presented in Table 4 show that the key factors significantly associated with CDDs’ participation in health and development activities after ivermectin treatment ended were focus (i.e., location), age, education, marital status, occupation, religion, volunteer activities before CDD service, and length of CDD service. Rural/urban categorization and gender were not significantly associated with the likelihood of post-CDD service. Former CDDs from Nyagak Bondo focus were the least likely to have participated in post-CDD service at 57.9% compared to 73.0% of those in Mt. Elgon, 80.4% in Bwindi, and 87.1% in Nyamagusani. Both Nyagak-Bondo and Nyamagusani stopped MDA only 4 years before the study, as opposed to 12 years for Mt. Elgon and 8 years for Bwindi. Older CDDs aged 36+, those with higher education levels, those who were married or had ever been married, community or religious leaders, pension/retired CDDs, and Protestants, Born Again, and Seventh-day Adventists tended to have higher frequencies of post-CDD service. Those who participated in health or development services before serving as a CDD had a significantly higher frequency of continued voluntary service after the ivermectin treatments stopped than those who had not served before serving as a CDD (80% vs. 59%, p<0.001). CDDs who had served for a longer period (5+ years) had a significantly higher proportion with continued voluntary health and development services compared to those who had served as CDDs for <5 years (75% vs. 63%, p<0.001). Gender and rural/urban residence were not significantly associated with post-CDD service.

Table 4. Proportion of CDDs who continued voluntary health and development services by socioeconomic and demographic characteristics.

¹The Pearson Chi-square test was used. The minimum expected count was 9.1.

FGDs and IDIs highlighted the following:

“When we were trained as CDDs, we were mentored that volunteering and to help your community is a good thing to do. I just wanted to help my community. There was nothing much because we earn very little allowance as VHTs.” (FGD, Male, 41 years old, Manafwa)

“I went back to work in order to help my community and my family since I have now understood the importance of these programs to us.” (FGD, Female, 45 years old, Madi-Okollo)

“I didn’t take long before I got involved in volunteering again because immediately after the half of the drug distribution of RB, I was absorbed into becoming a VHT and immediately I started the work of VHT which is volunteering.” (IDI, Female, 35 years old, Zombo)

Further, some KIIs from the national and district participants explained that some former CDDs who participated in onchocerciasis treatments have been recruited to VHTs to support community health-related activities. They noted the value of the CDDs as community assets to the MoH for many reasons: a) as volunteers, they continue with their daily activities but spare time to help; b) selection by the communities implies they are trusted as the focal persons in the villages for most of the health-related interventions; c) being part of the communities they understand better the specific local socio-cultural norms that may affect health-seeking behavior; d) CDDs have undergone trainings and have established experience in basic specific health knowledge, drug distribution, record-keeping, communication skills, counseling, etc. at the grassroots level. Such training can be used in other health-related areas. Several health officers reported that some former CDDs meeting the requirements have been recruited as VHTs.

“I believe some of them have been integrated into the health community systems like VHTs, but all these need to be followed to clearly understand.” (District Health Officer)

“Those who joined the VHT system, we still use them up to today. We use them in health-related activities. We bring them on board whenever we have issues like immunization. We always have them whenever we do outreaches.” (District Health Officer)

“These VHTs are very close to the people at the grassroots, and therefore, they ease the entire mobilization when a certain health program arises. And they are very important since they see things first and are equally faster during implementation.” (Community Development Officer)

4 Discussion

Using mixed-methods approaches, we explored if former CDDs continued service within the health system following the halt of MDA for onchocerciasis, reflecting indirect, continuing impacts of the NTD elimination programs on health and development in formerly endemic areas. While other researchers have studied the active roles, motivation, and performance of CDDs during implementation (15, 16, 21), less is known about what happens to their roles and sustainability once such programs end. Our study addresses this gap by providing a rare examination of the current roles of CDDs post-onchocerciasis elimination. These data reveal that former CDDs remain an important resource for service provision in their communities after onchocerciasis MDA stopped. The majority were engaged as volunteers in health-related areas, while over a quarter volunteered in development activities, with some doing both. A notable trend observed is the widespread volunteering of former CDDs in health-related initiatives. This suggests that the skills and knowledge acquired during their tenure as CDDs for onchocerciasis have equipped them to address other community health needs.

Our findings complement others that show that the use of CDDs has expanded significantly beyond their initial focus on onchocerciasis control. A growing body of literature highlights the valuable role of CDD strategies in strengthening health systems across sub-Saharan Africa and facilitating the implementation of diverse health interventions. Our study demonstrates how CDDs transition from drug distributors into broader health and development actors following program closure. It identifies the specific community-driven mechanisms that sustain CDD legitimacy and engagement even in the absence of financial incentives—findings that may be relevant for health programs operating in areas across the globe where CDDs or former CDDs can be found.

A study by Dilliott et al. (2) also reported that CDDs in rural settings in Uganda commonly volunteered for multiple health programs, highlighting the potential for resilience-promoting interventions to have cross-cutting impacts. The community members appreciated their work even during the post-elimination period, and some were seconded to these new programs by community members. When communities are engaged in the CDD programs, responsibility and accountability are enhanced (22–25).

Krentel et al. (7) note that NTD programs have significantly shifted toward integrated approaches. The CDDs’ roles have increasingly been crucial in managing the distribution of multiple drug combinations, adhering to diverse reporting requirements, and maintaining consistent communication with their communities throughout the year. This has equipped CDDs to work beyond drug distribution, and such findings were echoed in our study. Beyond the specific example of onchocerciasis, CDDs have been instrumental in programs such as home management of malaria and distribution of insecticidal bed nets (16, 26, 27). Their contributions have also extended to efforts controlling soil-transmitted helminths (STH), schistosomiasis, and immunization programs. Fleming et al. (16) further documented CDDs’ engagement as health mobilizers, encompassing activities such as sanitation and hygiene education, HIV/AIDS interventions, tuberculosis awareness training, and polio and immunization campaigns. Findings from our study concur with previous studies and show CDDs’ continued commitment to community health.

Our study also aimed to identify factors associated with continued service in health-related activities by former CDDs post-onchocerciasis elimination. There were significant differences between the percentage of CDDs continuing service by foci, but those differences were not apparently explained by differences in the time since MDA stopped, with the two foci in which MDA stopped most recently (four years prior in Nyagak-Bondo and Bwindi) representing both the lowest and highest percentages of continued service. The results indicate that several demographics, socio-economic, and experiential factors significantly influence post-CDD service. Older CDDs, those with higher levels of education, married individuals, and community leaders were more likely to engage in post-CDD activities. These factors may contribute to a stronger sense of community responsibility, a higher likelihood of establishing social networks, and a greater capacity for volunteer work. Studies elsewhere had documented similar findings (7, 15). The duration of the CDD service also played a significant role. CDDs who served longer were likelier to continue their involvement in health and development activities. This finding highlights the potential for long-term impact of the CDD program and suggests that the experience gained during CDD service can foster a lasting commitment to community service.

Personal satisfaction from helping others and participating in community health initiatives emerged as a key motivator in our qualitative results, aligning with studies emphasizing the intrinsic rewards of volunteer work. Furthermore, our data suggests that a strong sense of belonging and responsibility, fostered by social cohesion, robust community networks, and community support, is crucial. Accepting and appreciating CDDs within their communities likely reinforces their commitment and encourages continued service. This resonates with the existing literature, which highlights the importance of recognizing and valuing community health workers (7, 28, 29).

Our study showed that a sense of responsibility to serve their community members further underscores the decisive role of social obligation in driving continued participation. The importance of effective community engagement strategies for NTD interventions explored in this paper are consistent with findings of previous research that has highlighted community engagement, education, and sensitization as cornerstones for successful public health outcomes (24, 25, 30). Thus, the philosophy behind CDD’s support for NTDs at the community level serves as the basis for community engagement.

Our evidence pints to how CDDs transition from drug distributors during MDA into broader health and development actors following program closure. It identifies the community-driven mechanisms that sustain CDD legitimacy and engagement even in the absence of financial incentives. These findings underscore how CDDs can be integrated in other primary health care systems for other effective community-level outreach. The Uganda MoH has capitalized on this potential by recruiting former CDDs into VHTs, leveraging their skills and community connections to enhance the delivery of various health services. The VHT strategy was instituted in 2001 to support the gap created by the healthcare worker shortage in Uganda. VHTs serve as the link between the community and the formal health system, aiming to make healthcare access more equitable. Other studies have also noted the MoH’s reliance on CDDs and the need for NTD programs to work within existing health system infrastructure to strengthen the level of support provided to this critical cadre, while considering how to document their role and management requirements clearly within program guidelines. Agreeing to the role of this cadre at the national level and developing clear training, supervision, and management tools could be a critical first step toward improving CDD performance in many settings (21).

However, though the MoH may engage CDDs in other health-related activities, a few limitations were highlighted. Firstly, specific programs demand smartphones, which may be inaccessible to some CDDs. Secondly, educational barriers hinder participation for former CDDs without secondary school certificates, which is often a minimum requirement. Finally, identifying and mobilizing former CDDs can be challenging due to missing documentation and the reliance on community selection. Lakwo et al. (31) noted that CDDs are crucial to the success of elimination programs and recommended that the MoH demonstrate full ownership by allocating and mobilizing sufficient resources to support these vital community volunteers. Integrating former CDDs into the broader primary healthcare system can provide them with a platform for continued service. Indeed, our study showed that the former CDDs were integrated into the VHT system in Uganda. By recognizing their potential and providing opportunities for continued involvement, other MoH should be encouraged to harness CDDs’ skills and dedication to improve community health outcomes.

4.1 Conclusions

Our study has provided empirical evidence that former CDDs remain active in their communities after onchocerciasis elimination, particularly in health and development. Valuable insights into the factors that motivate former CDDs to continue serving their communities have been expounded. Former CDDs felt their service equipped them with skills for other jobs or opportunities. These results have several implications. They accentuate the indirect impact of the onchocerciasis elimination program, even after the formal tenure of CDDs has ended. They suggest that former CDDs can be valuable in community development and health initiatives. By harnessing their experience, skills, and networks, policymakers and practitioners can enhance the effectiveness of future programs and develop strategies to support and encourage the ongoing contributions of former CDDs to public health and development in hard-to-reach settings.

4.2 Study strengths and limitations

A major strength of this study is that it looks at what happens to CDDs long after an MDA program ends, something rarely covered in community health research. By combining different research methods, the study shows how these volunteers naturally evolve from handing out specific medicines to becoming broader leaders in community health and development. It also shows that CDD legitimacy and social capital are sustained in low-resource settings without ongoing financial incentives.

The empirical findings, while informative, should be viewed in the context of the following limitations. First, self-reported data from former CDDs may be subject to social desirability bias, in which participants provide responses they perceive as favorable. Second, there could be selection bias, as former CDDs with strong involvement and who remained involved in their communities might have been better documented in the parish-level listings used for the sampling frame. Third, the qualitative findings may not be generalizable to all contexts, and further research is needed to explore other factors influencing the post-elimination activities of former CDDs in other settings. A longitudinal study incorporating direct observation of former CDDs at work could provide richer insights into the long-term impact of the CDD program and the evolving roles of these individuals after onchocerciasis elimination.

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The author(s) declared that generative AI was not used in the creation of this manuscript.

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Footnotes

Edited by: Shannon M. Hedtke, La Trobe University, Australia

Reviewed by: Cabirou Mounchili Shintouo, Drexel University, United States

Michelle Cathorall, University of North Carolina Wilmington, United States