Rationale and theory.

The CD intervention is inspired by the Integrated Model of Communication for Social Change [25]. This model builds on the work of Paulo Freire, the Brazilian educator who conceived of communication as dialogue and participation [26], and describes an iterative process of information sharing which leads to mutual understanding, agreement and collective action. This CD intervention provides external stimuli in the form of community sensitisation, as well as nomination and training of volunteers, to trigger the implementation of regular community-owned dialogues about schistosomiasis prevention and control. As illustrated in the conceptual framework (Fig 1), the CD methodology prompts communities to explore the disease and how it affects them, enables participants to identify local issues and relevant solutions, and leads to collective decision on individual and communal actions to be implemented. This interactive process of both dialogue and collective decision-making is expected to address a set of behaviour determinants, such as knowledge, attitudes and norms, shift individual and collective practices, and ultimately build community ownership of issues affecting the community.

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Fig 1. Conceptual framework: CD for prevention and control of NTDs in Mozambique.

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Implementation process.

The roll-out of this CD intervention involved the following key phases:

• A community sensitisation exercise was conducted to inform local leaders and gate-keepers about the intervention and engage them in facilitating the participatory selection of non-specialist volunteers in their respective communities, following a set of criteria, to serve as CDFs. The selection of volunteers was community-led, and based on criteria similar to those recommended in the literature for community health volunteers [13]; these included residence and credibility in the community, knowledge of community norms, ability to read and write, interest in health issues, motivation and availability to engage as CDF.
• The selected volunteers then received a three-day classroom training on the basics of schistosomiasis aetiology, participatory facilitation techniques, the use of visual materials, and on basic recording and monitoring tools. The CD training manual can be founds in S1 Appendix.
• The volunteers were equipped with a set of simple tools that form the primary materials of the skills-based training, which contents and format are described in Table 1: (i) a visual flipchart adapted to low literacy audience and designed to match audience’s primary information needs covering: the main signs and symptoms of schistosomiasis, its treatment, risk behaviours, protective behaviours, and basic facts on MDA. The flipchart is found in S2 Appendix; (ii) a guidebook that includes: key facts about schistosomiasis; sample discussion guides; and information outlining the repeatable ten-step methodology that serves as a checklist for planning, organising, conducting and documenting CDs; the guidebook is included in S3 Appendix. Trained CDFs also received (iii) identification material (branded t-shirt and cap), and (iv) a set of simple forms to record data on CDs held (monitoring form) and to document decisions made and keep track of implementation progress (planning sheet).
• Following training, CDFs were tasked with organising and autonomously delivering regular Dialogues in their vicinity, at least once per month. These were based on a suggested schedule of topics to be covered over two 6-month cycles, and meant to coincide with biannual MDA delivery.

CDs were open to any interested community member; and while it was expected that key community figures regularly attend the dialogues, it was not a requirement for participants of one dialogue to attend the following ones.

Each CD focused on a specific topic in relation to schistosomiasis, and the discussion comprised three core phases based on Paulo Freire’s critical pedagogy which postulates that dialogue should provide opportunities for critical thinking, questioning of assumptions, and developing a new vision among group participants [26, 27]: (1) Explore: Communities are encouraged to explore a health topic through open-ended questions and open discussion. The visual flipchart provided is designed to facilitate this discussion, fill knowledge gaps and correct misconceptions. (2) Identify: Participants critically reflect on positive and negative behaviours pictured in the flipchart. They are encouraged to share their own stories and experiences of how the issue affects them, as well as successful and unsuccessful coping strategies. This discussion is expected to result in shaping and modelling of acceptable or desirable behaviours. (3) Decision making: Participants review actions and behaviours that have been identified as desirable, discussing how they could be applied in the local context, using the simple planning sheet to identify the specifics for putting decisions into action. This collective and public decision-making process is expected to result in positioning of locally relevant recommended behaviours as the social norm and facilitate planning for communal action.

CDFs were linked with the formal health system through a mobile phone credit allowance, that they were encouraged to use for contacting the district-level NTDs Focal Point, who acted as their supervisor. They could also ask questions at district-level feedback meetings, where all facilitators convened to reflect on experiences and share best practices mid-way through each CD cycle. Finally, they were linked via on-site observation visits carried out by district-level supervisors to a random sample of communities.

The intervention did not include implementation of MDA or any other provision of resources for disease prevention or control.

Comparison with similar approaches.

In adapting the CDA, which was originally designed for the iCCM programme, three main changes were made: (1) CDFs were regular community members with a minimum literacy level, but without prior medical training or ability to provide any medical service. This is contrary to the iCCM context where dialogues are facilitated by trained community health workers (CHWs), already enrolled in an established community health programme, and who provide basic child health services (counselling, diagnosis and treatment of diarrhoea, malaria and pneumonia in children under-five). (2) CDFs were provided with a planning sheet, used during the dialogues (at decision-making stage), for participants to record decisions made, review progress and devise a course of action, whereas in the iCCM-CD model decision tracking was not documented. Instead CHWs and community leaders were expected to monitor jointly the implementation of actions agreed upon. (3) The educational content was different, given that each approach addressed a different medical subject. For the schistosomiasis dialogues, the visuals and messages were carefully designed in close consultation with the Provincial Health Directorate, and field tested, to translate a complex disease transmission cycle into a series of risky versus protective behaviours that resonated with peoples’ lifestyles, and the description of signs and symptoms most relevant to those experienced locally.

This CDA differs from other CD models previously trialled and published in Mozambique. Specifically, it differs from the Tchova Tchova community dialogue programme implemented for HIV prevention in Mozambique (2009–2010, provinces Zambezia and Sofala), which consisted of a series of structured sessions with pre-identified community groups, aiming at changing some underlying structural factors of HIV prevention such as gender and sexual norms [28]. In the Tchova Tchova intervention, CDFs received monthly monetary incentives, close mentorship and supervision, and set targets in terms of number of dialogues per topic, and number and types of participants to be reached. Instead, in the intervention described here, CDFs did not receive any monetary incentive, conducted the dialogues autonomously, and were given broad guidance, but no set targets, to allow for local adaptations. The similarities and differences of this CDA with other participatory learning and action approaches has been described elsewhere [20].

Implementation setting.

The Nampula Provincial Health Directorate was involved in all stages of project implementation, working closely with NTDs Focal Points of the District Health Service in each of the four implementation districts. Malaria Consortium’s Research Officer managed the various data collection activities and provided administrative support to the coordination and implementation of activities. The project team also engaged regularly with the national Ministry of Health NTDs Programme throughout the study. Study results were presented and discussed at a national meeting held in Maputo in November 2016, co–hosted by the NTDs Programme and Malaria Consortium, which brought together a range of stakeholders with an interest in NTD programming and those with interest in community mobilisation and health promotion, including key Ministry of Health departments, major donors, non–government organisations, UN agencies and local research groups.

CDs were implemented in two six-month cycles, between August 2014 and November 2015, and aimed to cover all 68 communities of the four targeted districts, as listed in the national census 2007 [21]. All study districts have been receiving MDA for schistosomiasis, lymphatic filariasis and soil transmitted helminths since 2009, although inconsistently due to both drug shortages and operational challenges. Schistosomiasis campaign target groups varied depending on drug availability and implementation strategies. MDAs generally targeted school-age children between five and 14 years but, during the intervention, two districts received MDA that targeted the entire population over five years of age. Beside MDAs, no other programme targeting schistosomiasis prevention and control was implemented in the study area during the study period, according to the Nampula Provincial Health Directorate.

Study design.

The study was conceived as pragmatic research with the objective of contributing to the development of practical recommendations for health policy and practice [29, 30]. It was designed as a small-scale pilot, focusing on determining feasibility and acceptability of a community engagement intervention to improve communities’ knowledge, attitudes and practices, and engagement in wider schistosomiasis prevention and control.

A detailed evaluation plan was developed during the early stages of the study, which specified research questions and identified data sources, time and mode of data collection for each research question. Because of the focus on understanding feasibility and acceptability of the intervention, the majority of the data collected during and after implementation was qualitative. The intervention’s impact on knowledge, attitudes and practices (KAP) at population level was measured through quantitative baseline and endline cross-sectional surveys [21, 22]. Further insights were gained through triangulation with routine monitoring and evaluation data gathered by participants and the study team throughout the development and implementation phases of the study.

The following guidelines and frameworks informed conceptualisation of the study and reporting of study results:

• Feasibility of the intervention was conceived along the lines of the UK Medical Research Council’s guidance on process evaluation of complex interventions [31].

To assess the intervention’s feasibility, five aspects of its actual implementation were explored: fidelity (whether the intervention was delivered as intended), reach (whether the intended audience comes into contact with the intervention, and how), dose delivered (the quantity of intervention implemented), adaptation and mechanisms of impact (how does the delivered intervention produce change?).

• We used Peters et al.’s definition of acceptability [32] which, in the context of health interventions, refers to the degree of responsiveness of the intervention to the social and cultural expectations of individuals and communities.

The acceptability of the intervention was assessed by qualitative inquiry into participants’ satisfaction with the various elements of the intervention, and into their perception of the relevance and applicability of protective behaviours promoted through the intervention, as these are influenced by their social and cultural expectations.

• Reporting of qualitative data is informed by the consolidated criteria for reporting qualitative research (COREQ) [33].

Study area.

The CD intervention was implemented in four districts of Nampula province: Eráti, Mecubúri, Mogovolas and Murrupula (Fig 2), with a combined total population of 839,000 [34]. Study districts were selected in consultation with the Provincial Health Directorate based on the following criteria:

• High prevalence of schistosomiasis;
• Comparable socio-geographic conditions putting the population at risk of schistosomiasis infection, with a majority practicing subsistence agriculture in or near riverbeds;
• Comparable challenges with regard to schistosomiasis prevention and control, including a lack of access to clean water.

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Fig 2. Maps of Mozambique (A) and Nampula province (B) with intervention districts highlighted dark green.

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Sources of data.

Two cycles of CD were implemented. The study timeline and implementation schedule is summarised in Fig 3 below.

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Fig 3. Study implementation and data collection timeline.

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Data sources comprise of primary qualitative data, collected after the first CD cycle (midterm) and after the second CD cycle (endline), complemented with routine monitoring data. Table 2 provides an overview of qualitative and monitoring data sources.

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Table 2. Data sources.

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A description of data collection and analysis procedures is provided below.

a) Data collection.

Focus group discussions

Focus group discussions (FGDs) and key-informant interviews (KIIs) were conducted at two points:

• February and March 2015, after approximately six months of implementation (midterm)
• January 2016, after completion of the two six-month cycles of CDs, conducted between August 2014 and November 2015 (endline)

At midterm, the study team aimed to conduct one FGD each in the four intervention districts with each of the following target audiences:

• Community members who had attended the sensitisation meetings
• CD facilitators
• Female CD participants
• Male CD participants

Participants were identified using a combination of purposive and convenience sampling strategies. As a first step, suitable communities were selected using the following sampling criteria designed to elicit rich, insightful data:

• Communities that had not participated in feedback meetings
• Communities that had documented higher or lower than average number of CDs, CD participants, decisions or actions taken.

Between seven and ten communities were identified in each district. The study team subsequently invited a total of ten to twelve individuals per planned FGD from the identified communities based on convenience and in consultation with district health staff and CDFs.

Because at midterm data collection was hindered by severe flooding, FGDs with sensitisation meeting attendees could only be conducted in two of the four districts. Hence, a total of fourteen FGDs were conducted out of the sixteen planned.

At endline, the study team conducted one FGD each in the four intervention districts each with the following target audiences:

• CDFs
• CD participants

Conducting separate FGDs for male and female participants was not considered necessary as midterm responses did not vary by sex and, during the CDs, women were generally observed to be open and outspoken despite the presence of men.

Participants were sampled using a combination of purposive and convenience sampling, similar to the approach described above for midterm data collection. Between eight and ten communities per district were selected using this method, and between ten and twelve individuals were subsequently invited to participate in each FGD, in consultation with district health staff and CDFs. A total of eight FGDs were conducted at endline.

All FGDs were facilitated by the Research Officer who was a native speaker of Macua, the language commonly spoken in the study districts. Semi-structured discussion guides were developed in English for each target group and subsequently translated into Portuguese. Discussion guides were not translated into Macua, as there is no tradition of reading and writing in this language; Portuguese being the general language of education, adults who are literate most often do not read and write easily in their local language. The Research Officer also felt more comfortable translating directly from the Portuguese versions of the guides. While it was not possible to pre-test the discussion guides, the team discussed challenges and required adaptations after the first round of FGDs with each target audience.

All FGDs were audio-recorded and lasted between 60 and 90 minutes. A temporary Research Assistant, a university graduate and native speaker of Macua, supported note-taking during the FGDs and subsequently transcribed the FGDs, including non-verbal clues, translating verbatim into Portuguese directly from the audio recording. The Research Officer was responsible for supervising the Research Assistant and providing quality assurance by checking the accuracy of the translation and transcription. Quotes originally in Portuguese in the data set have been translated into English for this publication.

Key informant interviews

At endline, KIIs were conducted with a district health official with responsibility for NTDs prevention and control in each of the four intervention districts to explore their perceptions of the intervention. Interviewees were identified in consultation with the provincial NTDs Coordinator. In three districts, the interviewee was the district-level NTDs Focal Point. In one district, the NTDs Focal Point was not available and a Medical Officer was interviewed instead. All interviews were conducted by the Research Officer in Portuguese, using a semi-structured question guide, with a Research Assistant taking notes. It was not possible to pre-test the guide. Interviews were audio-recorded and lasted between 30 and 60 minutes. They were transcribed verbatim by the Research Assistant.

Observation visits

A sample of CDs were observed and documented by the Research Officer throughout the intervention period. The Research Officer aimed to visit approximately equal numbers of communities in all four intervention districts and to observe one or two CDs each month. The Research Officer randomly contacted CD facilitators to enquire about plans to conduct CDs in the near future. He was typically accompanied by the provincial and the respective district NTDs Focal Point. Conducting the planned number of observation visits proved challenging, as facilitators tended to schedule CDs only a few days in advance, while planning field visits required up to a week’s notice to ensure availability of transport to travel to the communities, as well as availability of provincial and district health staff to accompany the Research Officer to the field. In addition, planned CDs were also occasionally postponed by facilitators at short notice to accommodate the changing priorities of the community, for example for presidential or government visits, funerals or religious ceremonies. As a consequence, only eleven observation visits were conducted over the two six-month CD cycles.

During the observation visit, the Research Officer did not interfere in the CD proceedings and, with the help of an observation checklist, took notes, including direct quotes, relating to how the dialogues were conducted, topics discussed and decisions made. After the CD, the Research Officer and district health representative spent an additional one to two hours in the community to interact and have informal discussions with the CDF and two to three participants about their perceptions of the dialogue and their general thoughts on the approach. An unstructured discussion guide was developed for this purpose. While the CDs and informal discussions were typically conducted in Macua, the Research Officer submitted a report written in Portuguese after each visit using a standardised template, summarising his observations and providing a subjective assessment of the proceedings. Direct quotes were translated into Portuguese by the Research Officer.

b) Qualitative data analysis.

Observation visit reports, FGD and KII transcripts were managed and thematically analysed using MAXQDA software [version 12] (VERBI GmbH). The coding frame provided in S1 Table was initially developed by CR, KG and SM based on a review of the literature and the team’s experience of implementing similar interventions. It was then applied to the data set by JL, and further augmented and modified taking into account emerging themes. Modifications to the initial coding frame were discussed between JL and CR until consensus was reached, referring to the data set as required. Themes were analysed by code and summarised in a comprehensive report by JL. Taking into account limitations with regard to budget and time, the study team was satisfied that quantity and quality of the qualitative data collected was sufficient to answer research questions in sufficient depth in order to develop pragmatic policy-oriented recommendations.

a) Data collection.

Intervention development report

A report summarising the development of the CD intervention, including rapid qualitative assessment conducted to inform adaptation of the approach to a schistosomiasis context was compiled by SM.

Sensitisation report

The Research Officer who conducted the sensitisation meetings with community representatives compiled a report, which included names and contact details of meeting attendees and summarised information shared.

Training reports

A total of seven training reports were included. A report summarising the training of trainers was compiled and submitted by the trainer. It included the training agenda, discussion of training objectives and an overall assessment of trainers’ capacity. The six subsequent training sessions for CD facilitators were each documented by trainers using a report template provided by the study team. The reports included a list of all candidates trained, agenda, objectives, compiled pre- and post- training test results, and trainers’ observations with regard to strengths and weaknesses of the training. Trainees’ satisfaction was assessed with the help of a simple multiple-choice feedback questionnaire.

Feedback meeting reports

Five feedback meetings with CDF (one for each district from cycle 1 and one summary report from cycle 2) were documented by the Research Officer, who conducted the meetings using report templates provided by the study team. The reports captured the agenda, objectives, feedback received, challenges encountered and information provided to CDFs.

Routine monitoring and evaluation

Two simple forms were included in the CDF toolkit to collect routine monitoring and evaluation (M&E) data throughout the intervention period:

• A feedback form that CDFs were asked to complete after every CD they conducted. The form captured basic information such as time and date of the dialogue, numbers of participants and topics covered. Facilitators were also asked to document technical questions they were unable to answer and any challenges encountered before or during the dialogue.
• A planning sheet that facilitators were instructed to complete jointly with participants to capture decisions made during the Dialogue. The form was designed as a working document to be used and revisited throughout a CD cycle. Facilitators were also encouraged to use the forms for action planning and monitoring.

The routine M&E forms were collected at feedback meetings. A total of 1,458 feedback forms and 152 planning sheets were collected over the course of the intervention. CDFs reported that they occasionally forgot to complete forms after dialogues, lost forms they had completed or neglected to submit them to the study team.

b) Analysis of routine monitoring and evaluation data.

SM and CR conducted a review of reports (intervention development, sensitisation, training, feedback meetings reports) received throughout the intervention and extracted key information into summaries relevant to the evaluation of the CD intervention.

Routine M&E forms (planning sheet and feedback form) were reviewed and summarised by VA with the help of a spreadsheet template capturing key evaluation themes relating to feasibility and acceptability. Summaries were further reviewed and analysed by SM and CR.

1.1 Fidelity.

In general, the essential elements of the CD intervention described in Table 1 for each implementation phase were delivered as planned; however some variations occurred in the initial stage of the intervention (sensitisation and volunteers’ selection). The process for identifying and inviting communities to the sensitisation meeting, and the resulting CDF selection process, differed from the planned intervention design.

1.1.1 Sensitisation. Sensitisation of target communities was overall implemented as planned whereby District Health Services invited, through the health facilities, representatives from communities to explain the purpose of the intervention, time-line, and roles and responsibilities with a focus on engaging community leadership in facilitating the participatory selection of non-specialist volunteers in their respective communities. There was inconsistent understanding of the unit for selection of facilitators across the four districts. The study team defined the 68 villages used as enumeration areas in the most recent census [34] as units for the intervention and planned to train two CDFs per enumeration area. However, District Health Services invited, through the health facilities, representatives from communities in their catchment area as locally defined and understood, which did not match the census list of 68 communities, especially in one district (Mogovolas). The study team later realised that there was no commonly recognised definition of the term ‘community’ in the intervention area, which may refer to a neighbourhood, village, or cluster of villages, depending on stakeholders’ understanding.

1.1.2 Volunteers’ selection. Participants in sensitisation meetings described the first step in selecting CDFs commonly involved liaising with their respective community leader to share the information received at the sensitisation meeting and the criteria for selection of CDFs. In most cases, the process of selection of CDFs appears to have involved a type of consensus, which seemed to vary from one community to another. In some instances, the CDFs were selected by community leaders, alone or in conjunction with health professionals, or the community leader had the final word on selection after community level discussion. The extent of participation of community members in this selection process was unclear from respondents’ accounts but, overall, sensitisation meeting attendees thought the method was appropriate as they trusted community leaders and health professionals to identify the most adequate person to fulfil the CDF role.

The selection method in fact was good and fair, because the community knows who deserves (to be a facilitator), who is who, who is going to have the time to dedicate, talk, engage and dialogue. Because it has to be a trusted person in the community. We should not be authoritarian in saying let’s choose this guy. We already know who can, we know the community where we live and maybe we know colleagues in the profession. But it is the community that knows exactly, the leaders themselves and the community itself. So the selection method was excellent.

KII, endline

1.2 Reach.

1.2.1 CDFs recruited. As a result of the deviation in identifying and inviting communities to the sensitisation meeting, the number of CDFs recruited was below the number initially planned. We aimed to recruit a minimum of two CDFs, one male and one female, for each of the 68 communities across the four districts (total 136 CDFs), plus an additional number of CDFs for the most populated areas or areas with geographically dispersed population. Considering the budget limitations of the study, the study team aimed for a maximum of 200 CDFs. In practice, a total of 157 CDFs (24 in Erati, 44 in Mecuburi, 48 in Mogovolas, and 41 in Murrupula) were enrolled in the project, 53 females and 104 males. With the exception of the higher recruitment of males, the set of selection criteria provided, and described in Table 1, was broadly followed. Most CDFs were community members who had been previously involved in some health programme or activity, or community leaders as detailed in Table 4.

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Table 4. CDFs by district, gender and position in their community.

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1.2.2 Communities reached. Only 40 of the villages used as enumeration areas in the census had at least one CDF enrolled at the end of the sensitisation and selection exercise as shown in Table 5. The gap in communities covered is mainly attributable to an issue associated with the district of Mogovolas, and more precisely to the Nametil locality, where a large number of census villages were not covered. It was not possible to reconcile the list of census villages with the list of communities used at health centre level, due to varied local understandings of the term ‘communities’, and the absence of a consensual and reliable list of communities at local level. We have therefore not been able to determine the true geographical reach of the intervention.

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Table 5. Communities targeted vs. reached by the intervention.

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1.3 Dose delivered.

1.3.1 CDFs trainings. CDFs were trained at district level in a series of three-day training sessions of about 25 participants each, by a consultant trainer and the respective district NTDs Focal Point, who had previously attended a five-day training of trainers. The trainings were all completed by the end of August 2014.

FGDs conducted with CDFs showed a high satisfaction with the training content among participants. However, in midterm FGDs, they expressed initial concerns about not receiving compensation for their role as a CDF and felt that the training was too short for them to feel fully comfortable conducting dialogues on their own.

Overall, evaluation of the trainings showed a sharp increase in knowledge gained by participants regarding schistosomiasis prevention and treatment measures when comparing pre- and post-training test results presented in Table 6.

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Table 6. CDFs pre- and post- training test results.

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Monitoring data indicated that most of those trained appeared still active at the end of the study (until February 2016, three months after the second cycle had ended). All facilitators interviewed at endline confirmed they had been actively conducting CDs throughout both cycles. A few of them in two districts reported knowing about facilitators who had stopped.

1.3.2 CDs conducted. It was not possible to establish the total number of CDs conducted across the intervention areas due to some CDFs either not returning or not filling in the feedback forms and planning sheets. Based on a total of 1,458 CD feedback forms collected from 90% of the communities (as per the list based on census enumeration areas) with at least one CDF trained, on average about 30 CDs were conducted during the intervention period per community, which is broadly in line with the number expected, assuming an average of two to three CDFs per community and twelve CDs for the project period.

1.3.3 CD attendance. The analysis of feedback forms collected and the qualitative FGDs conducted at midterm and endline consistently indicated that, on average, the number of participants per CD comprised between 25 to 45 participants, and was very variable, ranging from under 20 to over 100 participants in some instances. Facilitators often attributed good attendance to community and religious leaders spreading the word and inviting people to attend.

In my community, the church leaders gave us a lot of support, many people from the church came to participate in the community dialogues. They liked it and they like it because they participated actively and followed what we explained. The people of the church were very supportive.

CDF, FGD, endline

Often CDFs would see a core group of regular attenders and many who attended only occasionally were attracted by word of mouth of participants in previous dialogues. Both CDFs and CD participants accounts indicate that more women than men tended to come to the dialogues. This was mainly attributed to women’s presence in the community, contrary to men who were away from home during the day because they were engaged in income generating activities, such as fishing and farming.

1.4 Local adaptations of the intervention.

1.4.1 CDFs’ catchment area. According to most CDFs interviewed and in light of the ambiguous definition of the term community, the majority of them understood that they were responsible for an area larger than their usual community of residence. They usually tried to cover their own community of residence as well as reaching out to nearby communities depending on their perception of their respective catchment area, by organising CDs in various locations (e.g. mosque, church, market), inviting participants from neighbouring communities to participate in CDs, and even organising CDs outside of their usual area of residence in an effort to maximise reach. Indeed, from the feedback forms received, we noted that some communities where no CDFs were trained actually received dialogues on an ad hoc basis, mainly in Mogovolas district. CDFs however reported that they were unable to deliver CDs in all communities within their vicinity due to long distances and access challenges, including the lack of transportation.

In my district, we primarily focused on the communities around the health centres, this is where the Dialogues happened… Some communities are remote and have not been participating in Community Dialogues, these are still not aware of what is being discussed or have not yet information. I think maybe the radius was a little small, because the (name) district is a huge district. We would like the Community Dialogue to reach out to the peripheries or to the most remote areas.

KII, endline

The gap in coverage was considered a weakness of the approach and both CDFs and CD participants interviewed were of the opinion that it was crucial that the dialogues reach all communities to avoid any perceptions of discrimination or exclusion.

In FGDs, CDFs frequently mentioned that they cooperated and facilitated the dialogues in pairs or groups of CDFs. This cooperation was used as a coping strategy to remediate to this perceived weakness, despite pointing at organisational and logistical challenges, such as distance between their respective residences that hampered easy communication and meetings.

1.4.2 Topics discussed. From the feedback forms, CDFs appeared to cover the main themes from the suggested list of topics; however, it appears that topics were often discussed together in ‘overview’ sessions instead of separate CDs. Observation visits also noted that CDFs did not manage to focus the discussions on specific topics within the flipchart with a tendency to rather present and discuss all themes of the flipchart in each dialogue.

The decisions made during CDs generally corroborate the practices recommended in the flipchart. Discussions were also initiated around other health issues, beyond schistosomiasis, which were felt by participants as common, relevant, but not sufficiently addressed by health interventions.

Most frequently, a diverse range of hygiene measures were discussed, such as: maintaining the cleanliness of households; washing of dishes; food hygiene and storing and personal hygiene. Other diseases commonly addressed included malaria, cholera, diarrhoeal and skin diseases (ex: ringworm, tungiasis, bed bugs). Few respondents also recalled having discussed sexually transmitted diseases during the dialogues.

We discussed a lot of things, not just what is in those books but also those issues related to compound hygiene, diarrhoea, as well as washing dishes before and after eating.

CDF, FGD, midterm

1.4.3 Support to CDFs. Linking CDFs with their district-level supervisor did not function as planned. While the intervention provided phone credit to CDFs to contact their district-level supervisor, few of them actually used this to reach out to the district Focal Points. According to CDF accounts collected at midterm and endline, they felt uncomfortable “jumping over hierarchies” by contacting the district Focal Point directly instead of liaising with the nearest health centre; some also mentioned practical considerations such as not having a personal mobile phone.

They also reported that district-level Focal Point was often not available at the rare instances when they tried to reach out.

I tried to call Dr. [name] once, but he said that “now I’m on the street, I can’t answer, call me another time”. That done, I called another time and the phone was out of range.

CDF, FGD, endline

Instead, CDFs indicated that they would have preferred supervisors to visit them on site, which was considered important to reinforce their credibility to the wider community and a sign of appreciation for their volunteer work.

1.5 Mechanisms of impact.

1.5.1 Ten-step methodology. Most interviewed and observed CDFs had good recall of the ten-step methodology to plan and lead CDs, which they perceived as necessary for a successful dialogue and helpful in order to avoid using lecture style. Observation visits reports, however, seem to indicate that the ten steps were not always strictly followed. Despite this, both CDFs accounts and observation visit reports confirm that the critical steps before (linking with community governance structure) and during (explore the topic and identify actions) the CDs were effectively conducted.

CDFs appropriately linked up with their respective community structures upon returning from the training and in the planning and organisation of all CDs. CDFs were of the opinion that community leaders played a crucial role in both preparing and conducting the CDs: it was mainly the community leaders who mobilised community residents to participate in the CDs and supported the identification of communities’ needs and problems, the decision-making process and the actual monitoring of decisions reached.

With the help of a community representative, like a leader, a queen, a leader or a secretary, we would talk and set the date, time and place. Then the representatives disseminated the information to the communities, because a facilitator alone without the representative will not be able to mobilise everyone in the communities.

CDF, FGD, midterm

During the sessions we were supported by the community leaders, who walk in the communities to ask if people have latrines and bathrooms… They also asked the communities why they do not have the latrines. Then, a follow-up was made for those who do not have latrines to build.

CDF, FGD, endline

1.5.2 Exploring the health topic. Across all four districts, the exploration phase of the CD appears to have been appropriately conducted. Discussions were described to have developed around questions posed by the facilitators to explore the themes, with participants sharing their knowledge, experiences and doubts. Discussions often revolved around the disease symptoms, similarities and differences with other diseases, and the treatment and prevention options, as per the intended topics. Observation visits’ reports confirm that facilitators corrected misconceptions and discussed with participants until a consensus was reached.

The facilitator explored the topic, for example: "Today, as always we will talk about bilharzia. First of all, I’d like someone to remind me of what bilharzia is… do you know what it is?” Members of the community responded correctly. One man said that "it is a disease that is caught in the still waters where there are snails with bugs". A woman raised her voice and said that "One can get Bilharzia when walking in dirty places, where people defecate and urinate without any control and sanitary care." The ideas shared by the first two persons were reinforced by others, showing that everyone agreed with the idea.

Annotation from observation visit of CD session, district A, second cycle

A large majority of community respondents who attended CDs, both in midterm and endline FGDs, showed good levels of correct biomedical knowledge on how the disease is acquired, transmitted and prevented. They were able to identify the disease signs and symptoms, and described quite accurately the roles of poor hygiene, contaminated freshwater, snails and microorganisms in the disease transmission cycle.

Bilharzia is a disease caused by lack of hygiene, doing necessities in the river, urinating in the river, going fishing without boots, washing without gloves or without shoes, then snails that are there on the river bank and they also have some animals that we cannot see, and those when it enters your body makes you suffer; that illness which we had not heard about, (we) used to say that it is a spell or something that came out of your body, we would take the person to the hospital but did not understand anything, and now that we heard that, we arrive at the hospital and we really tell the truth, how it happened and recognise this disease.

CD male participant, FGD, midterm

Respondents could correctly identify behaviours that put people at risk of infection; and demonstrated good understanding of recommended preventive and control practices as presented in the flipchart.

CD participants identified the CDs as their primary source of information about the disease and highlighted how dialogues had allowed for correction of misconceptions.

They thought that this disease is not acquired by staying in dirty water. They said bilharzia was a disease that was transmitted itself through heredity. So, all children were to get this illness because the ancestors also had it. They thought it was transmitted through incest, when someone had sex with a relative. Then we explained how it is acquired, which is through the dirty waters in the river, the lack of hygiene and soon they come to believe.

CDF, FGD, midterm

Some participants however still held misconceptions about how the disease is transmitted. As an example, one participant indicated that the snail enters the body rather than the parasite. Some CD participants thought that schistosomiasis could be acquired by standing in someone’s urine when in a latrine or by stepping in someone’s urine in the bush.

1.5.3 Identifying actions to resolve issues. The following phase of identifying actions was often not distinctly conducted, but rather merged with the exploring and decision-making phases, but this did not impede the identification of issues. In endline FGDs, CD participants reported discussing social norms and identifying practices that were not conducive to their health. Likewise, modelling of behaviours was performed with many of the respondents describing reaching a consensus on appropriate practices to be adopted.

Mostly, we talked about decision making, but we were not the ones who made the decisions. But from the discussion, the community itself made decisions for itself. So we discussed how to be aware of bilharzia. If someone is sick you should take medicines, go to the hospital. Therefore, we discussed and reached a consensus that from now on we will, for example, dig latrines, build bathhouses. After that, we made action plans.

CDF, FGD, endline

1.5.4 Decision-making on individual and communal actions to be implemented. In most CDs, the decision-making phase was the one that received the least emphasis. The decisions recorded in the CDFs monitoring tools mostly reflect effective prevention and control behaviours outlined in the visual materials and cover mainly generic hygiene practices, construction of latrines and a commitment to participate in MDA campaigns. Most of these actions are individual though some communal actions were also identified such as the construction of wells and boreholes, and in few instances also building latrines and bathrooms in the communities. However, the course of action was often left vague.

While all CDs resulted in clear identification of actions, the detailed planning of who was going to do what, when and how to ensure that these actions were implemented appeared to be more challenging. Often, the implementation was left to each individual’s responsibility or to the community leader to enforce. In a few instances, there are indications that community-led mechanisms for enforcing decisions existed and were applied, such as: community leaders and CDFs conducting house-to-house visits to check on the implementation of commitments made at the dialogue or the community organising itself to build latrines, with specific tasks attributed to groups of people.

In my community a committee was set up to monitor latrines (construction). All houses must have latrines, they must clean the compound, and when the latrine is full we must control the level well so that we can bury it …

CD male participants, FGD, midterm

The secretary (of the community leadership structure) would mobilise the people and send the community police to go around the rivers, and check who is bathing in the river to take them out of there.

CD participants, FGD, endline

Existing community structures such as the administrative and traditional leaders, community health committees, community police, community health workers, and activists were involved in implementation and monitoring mechanisms, where they existed. Youth and religious leaders are also mentioned in several instances with a role of information dissemination both to communicate the date of the next CD and also to raise awareness of community members on the decisions made and the necessity to collectively comply with these.

While most decisions reached through CDs were fairly generic and relied on individuals to implement (i.e. everyone should build a latrine), due to the community leaders’ involvement in the CD and endorsement of the decisions, these commitments were often turned into a community rule applicable to all community residents, paving the way for protective behaviours to be shaped into social norms, as community-recommended practices.

1.5.5 Participatory discussion. Most dialogues followed the inclusive participatory discussion method as intended. While supervisors considered that some observed CDs took the form of question and answer sessions, respondents in FGDs were of the opinion that CDs were largely participatory discussions with opportunity for participants to share their views and experiences and put forward questions.

They also said that everyone has the opportunity to speak, no one can feel excluded and they said that this is not a political party because these are diseases that affect us… all people have to speak about what they feel in their body, whether children or adults, everyone at the meeting had the chance to speak.

CD male participants, FGD, midterm

District-level health staff interviewed were of the opinion that the participatory nature of discussions made the dialogues more effective at changing knowledge and attitudes of people than lectures given by health workers.

2.1 Participants’ satisfaction.

2.1.1 An engaging platform. Interviewed facilitators and district health staff were of the opinion that the CDA facilitated a better understanding of health issues as information was transmitted “from the community to the community”, compared to health talks given by health staff. Facilitators valued the CDs as they allowed community members to share knowledge, experiences and ideas, and together they discussed and reached a consensus on how to overcome schistosomiasis.

Then each one starts to talk about what affects most the community because the dialogue is meant to reach a consensus. Since in the Dialogue we learnt many things that we did not know before, because we were accustomed to lectures. In the lectures, we are only told that disease x can be prevented in this and that way. While in Community Dialogues each one gives his contribution to a particular fact.

CDF, FGD, endline

Some CDFs reported an initial mistrust of community members who associated the purpose of CDs with political parties’ concomitant election campaign and thus did not participate in the CDs. However, this seems to have been clarified during the first CDs and disseminated with support from community leaders, resulting in more interest and more participants. The positive feedback to the community about the dialogues also led to attracting new participants through word of mouth from the CD participants. This confirms the acceptability of the approach.

Also those who participated communicated to others what they learnt and reported that those who did not participate missed. So this motivated many participants to join Community Dialogues.

CDF. FGD, midterm

2.1.2 Satisfaction driven by knowledge gains. The CDs were considered by all respondents as a good platform for the transmission of health information. Participants appreciated the gains in knowledge the CD provided, and enjoyed subsequently teaching their children, other family members and neighbours. Likewise, CDFs enjoyed the CD as it enabled them to learn and teach about behaviours that are conducive and detrimental to health.

We like to learn. Because I have children, I like to learn and then teach my children.

CD male participants, FGD, midterm

Respondents felt that dialogues were highly relevant because they helped them to fill gaps in their knowledge concerning a disease which affects them. Participants commonly described that before the CDs, “we were in the dark” (Note from observation visit, first cycle). All the information addressed during CDs was appreciated, but people especially enjoyed learning about the transmission and prevention of schistosomiasis, as well as learning that schistosomiasis has a cure and can be treated at local health facilities. People highlighted that they liked the opportunity to correct their misconceptions, and that by learning about hygiene measures they also learnt to prevent other diseases.

I liked it because when we go to Community Dialogues we receive information on wellbeing and communicate to other people in the community who could not be there. Because they (Community Dialogues) are reducing many diseases in the community. In the old days we were lost, we knew nothing.

CD participants, FGD, endline

We liked it because we did not know how the disease is acquired. In the old days we thought that this disease was contracted through having sex with a woman; others thought it was hernia. But with the explanation we learnt that just noticing the signs x and y sign means it is bilharzia, and it is acquired by staying long in the water, where we sit, where we fish.

CD participants, FGD, endline

2.1.3 Appreciation of the visual flipchart. CDFs described the flipchart and guidebook as essential tools for conducting participatory sessions, which assisted them with the recall of information learnt during training and were used to clarify questions and doubts arising in the course of the discussions.

The guidebooks are our hoes for the farm. Without the guides we could not work.

CDF, FGD, endline

The visual flipchart in particular was much appreciated both by participants and facilitators of CD sessions. The illustrations provided validation of the information transmitted by the facilitators. Participants said that if it wasn’t for the flipchart, they wouldn’t have necessarily believed in the information shared by the facilitators.

Also in my community it is like this, people do not believe without showing them the images. That’s when they opened the album and showed the pictures, only then they believed.

CD male participant, FGD, midterm

The flipchart’s illustrations were positively appreciated because they reinforced facilitators’ messages and reflected local context and practices. It was frequently described how during the dialogues, participants identified themselves or people they knew with the scenes pictured in the flipchart.

So that was the job that the flipchart did, it helped a lot because people saw with their eyes and when we talked we all screamed… that’s [name] of our community!

CDF, FGD, midterm

2.2 Relevance and applicability of protective behaviours.

Most protective behaviours discussed during CDs were perceived as relevant and applicable by respondents. Respondents’ accounts show that gaining knowledge of risk behaviours and protective practices also translated into changes in attitudes, and actions to treat and prevent the disease. Respondents shared the perception that the CDs had resulted in the adoption of preventive practices, reduction in the burden of schistosomiasis, and improvement of people’s health in general. They all were of the opinion that CDs should continue so as to sustain these changes.

In my community they thanked us and we want this project to last for a long time since it is helping the community. Since last year we noticed a change in the community, people are already healthy. We ask for a lot of help at the same time, continue to hold meetings to explain to the community because if we stop we will go back to what we used to do before.

CD male participant, FGD, midterm

2.2.1 Shift in care-seeking practices. During the FGDs, CD participants described that people had learnt about the importance of seeking immediate care at health facilities upon presentation of signs and symptoms of schistosomiasis. The majority of the respondents stated that most people’s attitudes had changed with health facilities now being the first choice in care-seeking, in place of traditional doctors. CDs seem to have increased awareness and understanding of the diagnosis and treatment available at health facilities and thus their self-efficacy in seeking medical care.

In the old days we used to think we should turn to the healer. When we got sick, of course, with a big belly we thought we were charmed—soon, we would turn to the healer. We used to say this is not bilharzia, he was infected by a woman. Hence the healer would give him a number of roots, he would defecate various things and never improve. After we had the Community Dialogues, it is now difficult to find people at the healer. They learnt that when they are ill they should go to the hospital to take pills. We did not know about bilharzia, when we saw someone with pale skin and pale hair, we thought he was impregnated, things of African magic.

CDF, FGD, endline

Interviewed district-level health staff confirmed that dialogues helped people to better articulate their symptoms which in turn facilitated the interactions with health workers in the diagnosis and treatment process. However, community respondents often pointed at inconclusive treatment experience citing the lack of medicines and diagnostics at public health facilities.

Community-level respondents expressed improved awareness about MDA process and purpose, but also frustration, in some communities, about the constant delay or cancellation of announced MDAs.

Some people held the perception that treatment campaigns killed people. During the discussion, the facilitator asked the participants in the Dialogue who had already lost a relative or acquaintance during the campaigns. It was proved that the idea that campaigns killed people was an invention of some people in bad faith.

Note from observation visit, second cycle

2.2.2 Hygiene and water-handling practices. In terms of prevention, the most cited changes included building latrines and bathrooms, cessation of bathing in freshwater, washing laundry and dishes away from water ponds, treating water, and generic ‘hygienic’ practices such as hand washing.

While people had previous knowledge about the importance of treating water before drinking, respondents reported that discussing this issue during CDs had changed peoples’ attitudes from considering boiling water as too laborious towards recognising its value.

In terms of avoiding contact with infected water, most common reported preventive practices learnt and adopted were the prohibition of swimming and playing in water ponds, and the collection of water for washing and bathing away from the freshwater sources.

In the old days, we the mothers before we knew we used to take our children to shower, arriving at the river we would let the children to swim in the river, while we were washing the clothes; But, in this water there are microbes that enter our organism and we get bilharzia; so we ended up seeing children pee weird things; Now we know that we should prevent this by building bathroom, when we go to the river we must take buckets to get water and wash the clothes outside, when we go we should draw water and bathe in the bathroom, so let’s prevent this disease.

CD participant, FGD, endline

2.2.3 Practices with limited applicability. Construction of latrines was the change most emphasised by respondents, however the correct use of latrines was seldom addressed. Respondents reported that only a few community members had the resources to construct improved latrines resulting in poor latrines (for example without proper slab or ventilation) limiting their actual use.

Despite the use of boots being one of the most frequently raised topics during discussions and participants being aware of their importance in avoiding contact with infected water when fishing or farming, the use of protective gear was only reported by few respondents. Most cited lack of financial resources to acquire boots.

In my community, they asked me about the boots issue, they said: “since we have this disease in our fields and we don’t have boots, shall we stop farming? How are we going to live? (…) In relation to this concern, I felt limited.

CDF,FGD, endline

2.2.4 Suggestions for improvement. Both facilitators and participants noted that the weak point of the CDA was the challenge in reaching out to all communities. They recurrently referred to the fact that other neighbouring communities needed to have access to and benefit from the CD platform.

Facilitators felt they were made responsible for too many communities without being provided with the means to actually reach these, both in terms of support in transportation and also in terms of compensating for their time. They were of the opinion that more facilitators needed to be trained in order for each facilitator to be responsible for their own community and all communities being reached.

Suggestions for improving the approach revolved around additional support for the CDFs especially: identification material, such as uniforms or badges, monetary incentives to compensate for their work, and transportation so that CDFs can reach more villages.

We would like to have a badge like other projects do. When you have a badge there is great respect in the society. When the person passes by, people already know, you don’t even need a diploma when you have a badge. Because it does not lie anyway.

CDF, FGD, endline

The lack of monetary incentive was the most frequent suggestion from CDFs, as this was considered a motivating factor and a form of recognition by the health system. More frequent supervision visits and refresher trainings were also cited for improvements. CDFs and CD participants were of the opinion that CDFs should be involved in community-level distribution of treatment for schistosomiasis, either through active participation in MDA delivery or provision of treatment to compensate for lack of access to health facilities.