Introduction

Human African Trypanosomiasis (HAT) or sleeping sickness is a neglected tropical disease (NTD) afflicting poor and rural populations in sub-Saharan Africa (SSA) [1]. HAT is caused by subspecies of Trypanosoma brucei transmitted by tsetse flies (Glossina) [2]. There are two forms of HAT: an anthroponotic form known as gambiense HAT (g-HAT) and a zoonotic form known as rhodesiense HAT (r-HAT) [3]. g-HAT accounted for 85% of all global cases reported in 2021 (747/802) of which 70% (425/747) were reported in Democratic Republic of Congo (DRC) [4]. If left untreated, HAT is almost always fatal [5].

In 2012, the World Health Organization (WHO) presented a plan to eliminate g-HAT, first by reducing its incidence to very low levels (<1 new case/year/10,000 people in 90% foci and <2000 cases/year reported globally) and, in a second stage, by interrupting transmission completely by 2030 [6, 7]. Active case detection and case treatment are the mainstays of efforts against g-HAT [4], supported by tsetse control in settings where elimination may not be achieved rapidly [3, 8–12].

Tiny Targets, small (50 x 25 cm) panels of cloth and mesh impregnated with insecticide, created specifically to control tsetse provide a cost-effective method of controlling the vector of HAT [3, 13–16]. This simple and cheap tool can be implemented by communities living in HAT affected areas [17].

Since the Alma Ata Declaration in 1978, community participation has been advocated as an essential factor towards the achievement of health care goals [18]. However, rigorous analyses of community-based projects face many challenges. These include: i) the absence of a widely-accepted definition of “community” and “participation”, (ii) the assumption that involving communities automatically fosters community interest, empowerment and self-sustainability [19], (iii) the lack of evidence that community participation contributes to programme outcomes, (iv) donor disinterest because of this lack of evidence, (v) neglecting the consideration of factors related to power and control as a key to empower people [20].

In the 1980s and 1990s, several tsetse control interventions involving the deployment of insecticide-treated targets by local communities were implemented in many countries [21–25]. While the interventions were cost-effective, the majority stopped once donors withdrew, even when human and/or animal trypanosomiasis was still a burden [26, 27]. Community participation was often seen by programme planners and donors as a way of transferring the labour and material costs of tsetse control to communities [28, 29]. Consequently, analyses of these community-based interventions focused more on economic costs and effectiveness while largely ignoring the context and social process of participation. Since then, studies about tsetse control and community participation are exceedingly scarce with only one community-based study identified, this being an investigation of tsetse control in three villages in Uganda [30].

Community participation is approached in different ways by planners and programmes. According to Rifkin, community participation approaches have ranged from ‘top down’ to ‘bottom up’. Top down is when community participation is considered a means to the end of attaining health improvement objectives and where participation is primarily in the form of community members doing what health professionals tell them. Bottom up is when community participation is seen as an end in itself and where community members assume leadership roles supported by health professionals [31–34].

We position community participation within an empowerment approach as defined by Rifkin in 1988: ‘a social process whereby specific groups with shared needs living in a defined geographic area actively pursue identification of their needs, take decisions and establish mechanisms to meet those needs.” [32, 34].

In 2017, a pilot community-based project was launched in three villages in DRC with the overall goal of empowering people to control tsetse using Tiny Targets. Initially, we assessed the operational feasibility of the project and evaluated whether this approach could form part of the national strategy for HAT elimination [17]. Following the success of the community-based project, the approach was scaled up to include 96 villages. In the present paper, we assess the community participation process of the three initial pilot villages over >4 years to evaluate to what extent this resulted in empowering communities.

Material and methods

Study area and population

The project was launched in three pilot villages from the Dunda health area in the south west of the Yasa Bonga health district (see Fig 1): Kimwilu Kuba (Pop: 1441; Cases: 4), Kimwela (Pop: 1200; Cases: 3) and Kisoko (Pop: 1005. Cases: 3).

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Fig 1. Location of the three pilot villages in the Dunda health area of Yassa Bonga health zone in Kwilu province, and the rivers, tributaries and fishponds.

DRC and Provinces source is GADM (https://gadm.org/license.html); Health Zone and Health Areas (https://data.humdata.org/dataset/drc-health-data); (Rivers) https://data.humdata.org/dataset/hydrographie-lineaire-rdc-drc-water-courses (Credit: ITM and LSTM).

https://doi.org/10.1371/journal.pgph.0001325.g001

Framework and procedures to evaluate empowerment

Our empowerment evaluation was guided by a framework proposed by Rifkin et al. in 1988 [32] and adapted by Draper et al. in 2010 [33]. This framework is a continuum that goes from mobilisation (community does what the professional advises), to collaboration (community contributes with time, materials and/or money), to empowerment (community plans and manages health activities with professional support) [32]. To evaluate participation, Rifkin et al. proposed five indicators: 1) needs assessment evaluation (implication in community needs identification); 2) sense of leadership (scope of community interests representation); 3) programme organisation involvement (involvement of existing community structures); 4) programme management level (community autonomy to implement activities); and 5) resource mobilization contribution (community resources invest in the project). Then different hypothetical situation are described regarding mobilisation, collaboration and empowerment for each indicators. The results are generally presented in a spidergram for more clarity [32, 33]. Draper et al. proposed a adapted version where indicators can be different and chose according to context preferably by or with the community. In our study we will use the adapted version.

We conducted a three-step evaluation with each of the vector control committees between March 2018 and November 2020.

The first step consisted of participatory workshops held with each of the three vector control committees in March 2018. The objective was to discuss how committee members defined community participation and, together with the research team, agree upon a defined set of community participation indicators with the purpose of evaluating them repeatedly over time.

The second step took place in September 2018 and another set of participatory workshops were organised with committee members. A baseline evaluation and a post-implementation evaluation were done where scores on each indicator were compared between the first Tiny Target deployment (August 2017) and the situation in September 2018, where three different deployment had been realised.

The third step consisted of another set of participatory workshops in November 2020, after the seventh Tiny Target deployment and more than a year after the operational changes introduced by the scale up of the community-based activity, to re-evaluate indicators and any perceived changes in assigned score since the last evaluation.

In November 2021, we decided to carry out additional Focus Group Discussions (FGDs) to explore how committee members perceived their future participation and empowerment until sleeping sickness eradication is achieved and beyond. Fig 2 summarises the evaluation timeline.

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Fig 2. Data collection and project operational evolution timeline.

https://doi.org/10.1371/journal.pgph.0001325.g002

A total of nine participatory workshops and three FGDs were conducted. All were held with the vector control committee members of the three pilot villages (see Table 1 for committee characteristics) separately in a classroom outside school hours. They were conducted in Kikongo by a Kikongo-speaking anthropologist (RN), assisted by a local assistant and the main researcher (CVK). Each workshop lasted around two hours using participatory learning tools, such as tables and spidergrams depicted on a big flipchart as a visual tool to aid discussion. FGDs lasted around one hour each using a topic guide. Workshops and FGDs were audio-recorded with permission of the participants, and notes were taken by the local assistant and the main researcher (CVK).

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Table 1. Vector committee characteristics.

https://doi.org/10.1371/journal.pgph.0001325.t001

Results

Our results are presented in three subsections. The first section describes the definition and operationalisation of the indicators for the community empowerment evaluation. The second presents the empowerment process evaluation results and the third the perceived future of this empowerment until the end of the project and beyond.

1. Definition and operationalisation of the indicators for the evaluation of participation

All three committees defined three similar indicators: (i) ‘Ownership & leadership’ (ii) ‘Planning & Organisation’ and (iii) ‘Volunteering’. A further indicator was identified by two committees: (iv) ‘Autonomy’. A fifth indicator, ‘community involvement’, was proposed by the lead author (CVK). Indicators and their definitions were then compiled into a table by the research team alongside three hypothetical situations referring to the three stages of the participation continuum as proposed by Rifkin: mobilisation (1), collaboration (2) and empowerment (3) for each indicator [32].

The table was presented back to each committee for refinement and agreement. The research team was not sure if ‘Leadership & ownership’ were considered as one concept or two. Committee members reaffirmed it was one concept because they defined it as “who is chief of the project” which in their view automatically implied ownership. Members agreed with all indicator definitions compiled in the table except for “volunteering” in which it became apparent that the research team had misunderstood the three committees’ point of view. The research team understood this indicator as “working without compensation.” However, committee members understood this as “working with willingness” and working without compensation was evidence of this willingness but not a requirement. In Kikongo language, volunteering and willingness are translated by the same word “luzolo” which explained the misunderstanding between the research team and the committees. Based on these discussions, this indicator was translated into English for this paper as ‘willingness’.

After discussion, a final table was consolidated to be used as a model for the evaluation (see Table 2). Committees and the research team proceeded to evaluate changes in participation at three different time points. They scored all indicators from 1 to 3 referring to the three different points on the participation continuum which goes from mobilisation to empowerment. Committee members sometimes deliberated between two hypothetical situations, so intermediate scores (i.e., 1.5, 2.5) were added to the evaluation scale. These analyses were presented as a spidergram. Fig 3 shows changes in participation over time for all three committees combined, as the committee-specific results were largely similar.

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Fig 3. Changes in the process of community participation in the three pilot communities combined.

https://doi.org/10.1371/journal.pgph.0001325.g003

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Table 2. Analysis grid compiling the 5 participation criteria defined by the committee members and the three points on the community participation continuum: Mobilisation (1) collaboration (2) empowerment (3).

https://doi.org/10.1371/journal.pgph.0001325.t002

Discussion

Our study provides evidence that community participation in a tsetse control project involving the use of Tiny Targets can be a source of empowerment. Community members belonging to village committees tasked with managing the deployment of Tiny Targets in their local area gained empowerment through programme ‘leadership & ownership’ (decision making and project appropriation) and ‘willingness’ (motivation to contribute to community well-being). However, the committees also identified barriers to further empowerment related to power structures and attitudes.

Empowerment was constrained by the top-down relationship with the external partner and power structures within the committee. These constraints were not immutable, with evidence of shifting power relations over the course of the study. For example, in the first phase of the evaluation, the research team was initially perceived as holding more power because they initiated the project yet committee members described rapidly gaining an increased sense of leadership and ownership which led to greater participation. Similarly, within the committees the leadership was initially held by the village chiefs. However, during the second phase of evaluation the committee members reported that power was shared more widely among committee members. These internal shifts in power have not always been reported. A study in Tanzania [36] which also employed Rifkin’s community participation framework found leadership was regarded as being restricted to the village leader who made almost all decisions without consulting village councils. The community recognized this, but found it totally acceptable as it reflected the expected power structure.

Which is not to suggest that traditional power structures were fully set aside in our study. The committees themselves remained dominated by males which, as has been reported elsewhere [37], can limit the full realization of empowerment. The second phase of evaluation also revealed that the operational changes necessitated by programme scale-up had an impact on external power relations: ‘ownership & leadership’ was perceived as being limited by the external partner which in this phase had assumed greater power related to the maintenance and sustainability of the project. This is one of the difficulties reported by many authors when trying to incorporate empowerment approaches within top-down programme [38, 39]. Most of the studies found, that aimed to evaluate of a community participation, reported on this imbalanced power between the community and the external partner, because of programme externally designed and imposed to communities [30, 36, 37, 40].

In addition to external and internal power structures, our study further revealed that stakeholder attitudes towards power relation dynamics can be barriers towards the realisation of (greater) empowerment. Committee members expressed a desire to continue to work with external partners even though their experience of power within such partnerships was unbalanced. This acceptance possibly suggests that the committees may not have been able to envisage a different type of partnership. As some authors have advocated previously, poor and marginalized people often lack a sense of control over their health and well-being, leading to a sense of fatalism, and a tendency to wait for outside actors and agencies to take control of local health problems [41]. Empowerment does not mean the involvement of an external partner has to end. The attitude and nature of the power relations between the community and the external professional partner(s) are important. Partnerships with power relations based on equity can be seen as social capital that could increase empowerment and even make actions stronger and more effective [42].

Implications from our study for tsetse control programmes are potentially threefold. Firstly, a Tiny Target programme as operationalised in DRC can result in community empowerment. If even greater levels of empowerment are sought then a revised programme structure and attitudes more supportive of empowerment objectives may be needed. The top-down nature of tsetse control programmes limits empowerment [43–45]. If community empowerment is an objective of a progamme then the top-down structure needs to change to a more holistic and intersectoral approach involving various stakeholders. These could be the communities themselves, NGOs or government departments involved with the environment, agriculture and other human health concerns (e.g., malaria, other NTDs). Bardosh has argued that one of the problems commonly faced by community-based projects concerned with controlling NTDs is that their vision is limited to the disease only because of their vertical nature [46]. More holistic and intersectoral approaches would benefit communities as they create more opportunities for experiencing partnerships and for prioritizing needs identified by communities. In the case of g-HAT in DRC, many professionals are now advocating for a switch from a vertical programme led by the PNLTHA to a horizontal programme as part of the local health structures [10].

Attitudes toward community participation require a change, and this is probably even more essential than changing structures. A shift needs to occur to ensure that empowerment is envisioned as an aim in its own right [19, 46–51]. Attitudes conducive to sharing power such as respecting community opinions, respecting culture, accommodating the community, being transparent and encouraging dialogue should be prioritized. For empowerment to progress, the attitudes of all stakeholders need to change, including the communities. However, health professionals hold more power initially and are best placed to encourage and foster positive attitudes toward community participation. Changing the attitudes of health professionals towards sharing of power may also help them to better understand community heterogeneity [52] and internal power dynamics. As suggested previously, participation is most likely to empower marginalized communities to exercise control of their lives through the transfer of power from health professionals to communities and through effective knowledge sharing [53, 54].

This study aimed to evaluate community participation in a participatory manner with committee members being the evaluators. Previously, this approach has been used only once for tsetse control in Africa [30]. The use of Rifkin’s framework has also not been widely used. We found only four references in the African context [30, 36, 37, 40] and only one of them was participatory with indicators and the scoring evaluation made by community members [30]. Most previous studies that have used the Rifkin framework have applied the five pre-determined indicators used in the original version: leadership, organisation, need assessment, resource mobilisation and management [32]. Consequently, comparisons between our evaluation and these earlier studies are difficult. Some of the indicators that the committee members in our study chose to define community participation are comparable [52, 55, 56]. For example, the indicator ‘autonomy’ in our study relates to ‘resource mobilisation’ as it pertains to how community members contribute with their local resources. Other indicators have very different meanings even if using the same name. ‘Organisation’ in the original framework referred to whether the project was conceived with existing community structures, unlike our study where ‘organisation’ referred to who is responsible for implementing an action. The ‘willingness’ indicator in our study is also seemingly unique, with no obvious counterpart in previously published studies of community participation. This shows that definitions of community participation differ according to various and changing contexts. Accordingly, we would recommend further use of the adapted version of the Rifkin framework, by Draper et al. [33], that allows communities to define their own indicators of community participation.

Limitations

Our study has several limitations. First, the scores given during the community participation analysis may have been subject to social desirability bias. Committee members had formed good relations with the researchers and were perhaps reluctant to disappoint; they may have been wary of upsetting external partners and/or losing support from the Tiny Targets project. Second, critical self-reflection is not necessarily a common practice for committee members. Third, the study may also have been subject to some form of courtesy bias in which participants expressed that they wanted the Research Team to continue to work in their villages. Fourth, the analyses were limited to understanding community participation through the experience of a relatively small group of participants and this may has created a bias. As some authors have noted previously, the structure of community leadership is often historically or culturally determined to exclude marginalised groups, including women, young people and marginalised men [57]. As a result, a committee scoring their empowerment as being high does not mean that all committee interests have been taken into account. Broader community participation might have revealed new or conflicting perspectives. Finally, the three committees lacked gender balance meaning the study findings have a male-dominated perspective.

Conclusion

The Tiny Target project was a source of empowerment for the vector control committee members. They expressed a desire to continue participating with the project and partners. However, they also identified that power structures and attitudes inside the committee and between the community and partners limited the empowerment process. If empowerment is to be an important objective of projects and programmes two important changes are suggested. First, the top down structure currently in place within the g-HAT programme is not the most appropriate for empowerment and a more holistic and intersectoral approach is recommended. Second attitude of sharing power need to be encouraged.