The management of HIV/AIDS is a collective action to improve health and wellbeing of communities. Community dialogue is an important integrated model of communication in the process of producing social change and management of HIV/AIDS. The model has been adopted by actors in fighting HIV and AIDS in Uganda, but whose processes and how it produces this change is not well documented. By observing two civil society organizations in two separate communities and contexts where staff facilitated interaction among communities, we were struck by how they interrelated in different spaces, identification of local solutions and collective participation in decisions making. Community dialogue is a compound term that emanates from the ancient Greek word “dialogos”. Logos explained as ‘meaning of the word’ and dia means ‘through’.1 It is a discussion where people reach below everyday life. Freire contends that;
“Every human being, no matter how ‘ignorant’ or submerged in the ‘culture of silence’, he or she may be, is capable of looking critically at the world in a dialogical encounter with others. When provided with the proper tools for such an encounter, the individual can gradually perceive personal or social reality as well as the contradictions. Further, the person will become conscious of his or her own perception of that reality, and deal critically with it”- (Freire, 1970)2
It is a process through which people can identify, represent, and develop their community through discussions. Greater attention is given to continuity of interactions, reversal of hierarchical powers and enabling empowered participation that emerges from a convergence of thoughts through inquiry and reflection,3 but also enables people of all walks of life to talk deeply and personally about realities that divide them.4 It is similar to spiritual principles,5 rights-based approaches6,7 and sustainable livelihoods.8 We focus on community level dialogues on HIV/AIDS management. We examine how community dialogue liberates local people who would possibly prefer to remain silent about their condition because of fear of stigma, isolation, lack of information and fear of shame among others, are able to narrate their stories9,10 through asking questions, reflecting, sharing information and demanding the services. According to8,10,11 involvement of local people in the formulation of solutions to their problems has implications on sustainability. Further, most studies that have attempted to provide an understanding of HIV/AIDS management,12–15 indicate the perspectives of practitioners and adults. This study captured the voices of children by visual artistic means and drawings.
The study was conducted in two sites; Kalangala and Nakasongola districts that were purposively selected. These sites were among the most hit by HIV /AIDS with high prevalence rates,16–18 i.e., 29% and 20.3 % for Kalangala and Nakasongola19–21 respectively, which were high compared to the national prevalence rate of 6.4 and 7.3%.8 Kalangala and Nakasongola communities worked with Action Aid International (AAIU) and Save the Children respectively, to mitigate HIV/AIDS effects using methodologies that applied community dialogue.
This was an ethnographic study that collected data between 2009 and 2015. We employed a case study design as the most appropriate strategy for studying relatively virgin areas, such as how community dialogue is applied in different spaces to integrate the views and resources of adults and children in collective identification, sharing and mitigation of HIV/AIDS concerns, where there a few theories available to enable subsequent formulation of testable hypothesis. Writers like22–25 concur with this argument. The design is also well suited for studying one or a few representative cases,26 and for in-depth investigation and understanding27 of HIV/AIDS problem solving. The use of purposive sampling was to ensure an in-depth account of the problem being studied and that all categories of people, their views, and situations relevant to the question under investigation were involved in the study. This sampling technique effectively dealt with the reasoning, ensured logical flow and representation of ideas.
We conducted preliminary visits of the two study communities to establish rapport, specifically to familiarise with the work methods and seek permission from the two study institutions, which enabled full proposal development. Multiple methods were used to gather the data from children and adults, mainly, participant observation, complemented by in-depth interviews, focus group discussions, participatory rural appraisal and key informant interviews. Researchers also participated in some administrative work to generate more insights on participants’ interactions. The data was largely analysed manually in considering the themes that emerged during data collection and continuously checked out for emerging explanations that were incorporated.
Study participants were communities and resource persons working with Action Aid International and Save the Children in Kalangala and Nakasongola to mitigate the adverse effects of HIV/AIDS. Participants were purposively selected with the help of social support agencies staff alongside community leaders. Key informants comprised of HIV/AIDS programme coordinators and officials at the two districts.
Clearance to carry out the study was obtained from Makerere University, College of Humanities and Social Sciences. We also obtained permission to access communities from the two civil society organisations (CSOs). The purpose of the study was explained to community leaders, community groups and the guardians of minors, from whom we obtained written consent. We maintained anonymous in the data collection exercise and used pseudo names in verbatim quotes to ensure confidentiality. We did not speak on matters that were discussed; neither did we influence the direction of talking in the different forums visited. However, we shared our research interest, fitted in the community agendas and thanked participants for accepting to learn from them.
Data comprised of detailed field notes, observations, digital materials, children’s drawings and community experiences of interacting in the different spaces was analysed at different intervals; before, during and after collection. Large data was condensed into themes and patterns aligned to study objectives. The process of typing, editing and coding helped to create emerging themes which was necessary to expand notes and matching them with thematic categories; spaces for community dialogue and catalysts of community dialogue. The codes and themes formed a basis for thematic analysis across responses, to establish meaning, explanations and writing.
The two CSO used different settings to facilitate identification, sharing and mitigation of HIV/AIDS Concerns. HIV/AIDS concerns in this study include worries that give course for community dialogues, such as stigma, infections, access to services, accurate information, rights, orphan problem, shame, and low self-esteem among others. Spaces, both instantaneous and regular allow safe interaction among communities regarding HIV/AIDS issues and take place within the community to ensure everyone’s active participation in HIV/AIDS issue identification, sharing and mitigation.
Instantaneous spaces for dialogue
Instantaneous spaces for dialogues encompassed bazars, mother or father dialogues, radio talk shows and those initiated around testing sites. These spaces are organised by any persons in community who deems it fit to share information which may not necessarily be on HIV/AIDS. The study followed only those dialogues that were deliberately organised to share HIV/AIDS messages. The participants taking part in instantaneous dialogue spaces are not screened so any member of the community, even passer-by’s present may take advantage of these spaces to share HIV/AIDS messages. The significance of these settings is that they enabled larger sections of the community to share information on HIV/AIDS, since they were open to publics. These spaces are presented hereunder:
Bazaars are spaces where community members were mobilised to talk about a subject on a specified day, time and place, usually an open ground which was publicized. Bazaars formed community dialogue platforms, locally known as - ‘ekimeeza’- singular. The discussions evolved around social worlds including sharing experiences and understandings of HIV/AIDS issues, such as monitoring of violations of human rights of people living with HIV/AIDS, among others.
Participant observation of Kalyakooti community bazaar held on one Wednesday afternoon
Our visit to Kalyakoti had been communicated to community gate keepers, including those who organised the bazaar and the local council chairperson which was necessary for building rapport. Therefore our presence ought not to have disrupted community dialogues in the bazaar. Efforts were made to accommodate everyone’s view, which enabled participants, including children to voice their concerns. The Kalyakooti dialogue was moderated by community member, who they suggested and agreed on among others. The organiser indicated that HIV/AIDS was slotted on the agenda of every gathering, even if it was for a minute. A similar message was echoed by a key informant in Kalangala, who mentioned that the district integrated education and communication on HIV/AIDS in its general developmental agenda, which would otherwise be difficult to implement in isolation because of the budget constraints.
“…..It was necessary to integrate HIV in education, fisheries, politics, agriculture, works, and environment. We have to talk about HIV and AIDS as a crosscutting issue. In all district activities, HIV must be mandatory. This was a council resolution”- (Secretaries for Health, Kalangala and Nakasongola Districts).
In another bazaar attended at Kaisoro community, some individuals who were not immediately accepted to talk felt impatient and decided to grab the floor, demanding for a step down of the moderator, who they suspected to underrate them, whilst they demanded to talk, saying that HIV/AIDS affected all. This shows that with HIV/AIDS, unlike anything else, anybody irrespective of their back ground has some experience to share.
Mother or father talks
Same sex parents in their own right, hosted by one among them occasionally discussed issues regarding parenting. Participant observations show that both male and females in teams of ten or more organised themselves and convened for discussions on the wellbeing of their children, in the face of HIV/AIDS. They named their dialogues mother or father talk. Prevention of mother to child transmission, referral opportunities, children reproductive health, consumption of drugs and communicable diseases were popular mitigation actions in mother or father dialogues, accessed by the study. At the meetings they also counselled themselves regarding care for positive kids in their homes in addition to the orphans and vulnerable children, since most families appeared to face related challenges. The same spaces were used as learning grounds on important information about HIV/AIDS, through self-education and they developed plans to mitigate the effects. Worth of notice is the fact that, it was unlikely that parents who are also vulnerable to HIV/AIDS had the audacity to talk about personal HIV/AIDS concerns among themselves. They would instead discuss children matters. Moreover, mother or father talks achieved a lot in relation to communication on children’s wellbeing, but registered little indication of talking to their children on similar issues. For example, participant observation of women’s dialogues at a fireplace as they prepared food during a material development activity in Kaisolo, mainly centred on improving household incomes, to enable them cater for the needs of increasing OVCs. There was no sign of wanting to talk with children, who they pushed to play all the time they came near to them. They would however discuss ways to keep children in school, since there were teachers who are trained to talk to children.
Engagements at HIV testing sites
Researchers made visits to HIV/AIDS testing sites, attended counselling sessions, listened to discussions and observed interactions among and between the people who utilised HIV testing sites as dialogue spaces. For instance, the HIV/AIDS testing site hosted at Nalulongo village under a Musinga Bakazi tree was facilitated by health care providers and assisted by the community resource persons who handled clients’ registration. Registration complies with the requirement for client’s knowledge and consent provided for under the Uganda National Policy Guidelines for HIV counselling and testing (2005:7).28 Our participation in some administration work during the testing exercises enabled access to the procedures followed in testing and how it evolved into mitigation interventions. Participant observations revealed a three phased session that is explained:
“Firstly, the community resource persons sensitised and registered individuals who wanted to test for HIV/AIDS and then invited the district health teams to provide the HIV counselling and testing services. After the general discussions, blood samples were taken. The health providers to ensure privacy, attended to community members individually” –(Najjuma)29
At the time of waiting for the results, whispers were common place, while other clients simply smiled or kept quiet, which was a sign that they were perhaps nervous. After sometime, people started talking openly and later on top of their voices, although conversations centred on other matters, such as garden thieves and not on HIV/AIDS problem which had convened them. This demonstrates a possibility of dialogue on HIV/AIDS being seemingly sensitive and required vigilance to talk about. Other observations made; more women attended these spaces than the men, possibly because of their reproductive health needs and care work, they were more likely to be present in trainings and community meetings organised around HIV and health. In relation, notions of gender featured when we made an observation that women population exceeding the men. Women were quick to identify the challenges they faced with their spouses, indicating that:
“The men have their authority and power. Please help us with some knowledge on how we can bring them. The men say; if for us, we will be negative, they will too be! In this community, a woman cannot tell a man anything, and he accepts.”- (Participant at Nalulongo testing site)
Participants’ responses stressed male hegemony; for husbands in this community dominated their wives, as it is traditionally accepted, which underscored the need for mainstreaming gender into strategies for collective identification, sharing and planning of interventions to mitigate HIV/AIDS effects, organised in community level spaces. This would help dialoguers in these spaces, bring up hidden aspects of power relations in discussions on HIV/AIDS concerns to heighten mitigation measures, despite any existing efforts as one key informant explained:
“We highly believe there is a very strong correlation between addressing the HIV problem and gender, so, we have empowered the women. We are continuing to empower women, we will empower women, and I do not know where we will end.”- (Programme Officer, AAIU)
Community members would usually brainstorm on possible mitigation measures and their arrangements featured in testing sites visited, especially during interactions between them and medical staff. For instance they talked about behavioural and nutritional values among others as mitigation measures in case one was found with a diagnosis of HIV. In general, these spaces provided opportunities for any member of the community, be it kids, or elderly to take part in generating solutions to the HIV/AIDS concerns.
Local media as space for dialogue
Local media comprised of several forums that were put in place by individuals or community groups to facilitate access to HIV/AIDS messages. These included community radios, private radios and film places. The study found these powerful tools in promoting community dialogues about HIV/AIDS concerns. In Kalangala, for instance, local radios hosted programmes in the form of talk shows and role plays about HIV/AIDS realities that provoked discussions.
“We have specific days when we host programmes on Radio Ssese and Radio Buddu, concerning HIV and AIDS. We talk about the situation as we see it, and people make calls to cause live discussions on the problem.”- (Secretary for Health, Kalangala District)
Many community radios particularly in Nakasongola, had a mast consisting of a tall pole, on which a receiver was placed to deliver messages to the masses in that community (Figure S1 in the online supplementary document (OSD)). Here, study participants mentioned that they would pay between UGX1000-2000 or (US$1/4 -1/2) for the airtime, depending on the length of the HIV/AIDS message to be voiced. They said that:
“You part with UGX1000 (USD 0.27) and communicate a message in the form you want it.”- (FGDs Kaaya and Katuugo)
Responses of key informants and FGDs show that these spaces were actively engaged by study participants to make a contribution to HIV/AIDS problem solving, especially in hard to reach communities. This underlines the ‘Agenda Setting Theory’, advanced by Fritz, in 1946 cited in (Dominic)30 that the mass media is too powerful to the extent that they set the agenda for people’s daily conversations, at home, schools, places of work, and that formal and informal conversations have a direct relationship with the media reports. Therefore, having access to mass media is essential in increasing people’s awareness and knowledge of HIV/AIDS issues,31 which eventually influences of mitigation actions.
Regular community spaces for dialogue
In the previous section we have looked at instantaneous spaces and how they were used in collective identification, sharing and mitigation of HIV/AIDS concerns by study communities. This section presents regular spaces. These constituted places with definite schedules continuously engaged on community dialogues. Participant observations show that these provided safe social spaces that enabled participants to contribute and at the same time share messages, which was important in dealing with stigma, shame, and accessibility to services among other concerns. People who utilised these spaces, were more orderly, engaging, and guided by shared norms in their interactions and were more likely to receive complete and reliable information on HIV/AIDS to help them implement their mitigation plans, reflected in the forms of actions taken, showing their understanding of the problem.
Circles were community groups formed with the support of external social support agencies and later became popular spaces for community interaction on matters of HIV/AIDS, among others. In circles, individuals as agents had the opportunity of making their views heard, modify their attitudes, assume ownership of the problem, and were more likely to take local action. Circles promote active dialogue and the empowerment of participants.10,32 In some cases the community invited knowledgeable persons such as medical personnel and counsellors to augment their experiences, out of which interaction, understanding and management of the problem emerged. This was explained:
*“The circle act as an HIV and AIDS Support group (HAS). These started as learning groups, when actors had acquired all the skills, they had to put their learning into practice. In dialogue meetings, they brainstorm on all possible actions to mitigate the adverse effects of HIV and AIDS and then prioritise. This is how they invite us to come and work with them.”- **(*Programme officer, Save the Children)
In another meeting we attended in Kalangala, the community invited the District Health Officer who used the circle as space of interaction and engaged us for over four hours on treatment literacy, including nutrition, counselling, CD4 count, available drugs, and referral opportunities. The DHO on behalf of the health office agreed with participants on possible areas of collaboration. In recognition of such interaction, the community noted that;
“This knowledge from big offices cannot be easily accessed, unless members are mobilised and willing to assemble in dialogue meetings, like we do.”- (Community Intermediary, Betta Village)
From this explanation, we note that community organising in circles makes it possible to network for collective identification, sharing and mitigation of HIV/AIDS concerns is easy to realise. The circles facilitated access to officials and messages that would be difficult to reach, if study participants were not organised. Further, the sitting style in ‘a circle’ among members of the circle provided a round table model that enabled all participants to see all the others and allowed interactive dialogues to harness the collective dimension in identification, sharing and mitigation of HIV/AIDS concerns.
Dialogues in village meetings
Village meetings are the usual village engagements which enable residents to plan for their village regarding community political security, food security, health and development, among others. A community elder or someone in authority, was normally responsible for preparing the agenda, mobilising residents and hosting the meeting for their community improvement, which may or may not have HIV/AIDS on their agenda. Community facilitators, who would not be on the invitation list, reported self-invite to any community meeting irrespective of the agenda. Through self-invitation to village meetings, self-education, attention to puzzling questions, encouragement to go for testing and clarification of misconceptions happened. Participants mentioned that wherever there was an opportunity of meeting the people in the village, he could choose to talk about HIV /AIDS as per this explanation;
“Now, there are ‘silly’ men who say that when they test and people come to know that they are HIV positive, the women may not love them! That is why I use any available space to reach them from where they are, in order to talk on HIV issues.”- (FGD, Zengebe)
Another woman who took advantage of a farmer’s day to talk about HIV/AIDS reported her dialogue experiences of self-invite:
“On the district farmer’s day, I approached the Master of Ceremony and asked for space to say something. I used this chance given to me, to educate the public about the importance of HIV and AIDS testing.”- (Study participant, Kaisoro)
Another individual elaborated this strategy that;
“There are periods, when I register the places that have organised the meetings where I can find the people. People may convene for reasons on their agenda, then for me, I bring in an HIV/AIDS message and that sparks off the discussion. However, you should ask for permission or else you can be embarrassed.”- (Study participant, Suubi Nyabaseke)
These assertions are pointing to actors’ initiatives to utilise the different settings in their community, as spaces to identify, and share HIV/AIDS concerns among the populations, which makes discussions as well as mitigation of the same a collective effort.
Dialogues in community events blessed by religious leaders
Religious leaders are present in daily community practices, including funerals, weddings, and thanks giving, other than prayers, to support the emotional wellbeing of communities. In the past, it was rare to find people talking about community problems in such spaces, in that, they symbolised moments of fear, grieve, and or happiness. However, realising that HIV/AIDS is a concern for all; these events were now considered useful HIV/AIDS dialogue spaces, during which preachers incorporated HIV/AIDS concerns in their condolence messages and you would hear people seated in their cocoons, extending the conversation. One respondent elaborated that;
“HIV and AIDS messages are greatly shared, especially when the dead was suspected to have died of HIV and AIDS! You would hear those present beginning to share the challenges of AIDS with those close to them.” - (FGD, Kaisoro Village)
Even children of ages 7 to 9 reached by the study, reported burials, weddings and prayer gatherings as significant spaces they knew that supported identification, sharing and mitigation of HIV/AIDS concerns. Their responses were consistent with those of adults, as shown by their codifications in figures S2, S3, and S4 in the OSD. For example they drew pictures showing their comprehension of events blessed by religious and community dialogues.
In spaces 2, 3 and 4 is where religious leaders incorporated HIV/AIDS concerns in their preaching. Preachers’ generated massages to share with the congregation as identified and reported by the children. In considering their age, the children appeared innocent in their drawing, but at the same time producing vivid data that could perfectly shape policy development and reform on matters of HIV/AIDS management. In relation, Krampon33argues that the basic assumption behind the development of children’s drawings is that there is a tendency towards realism.
Dialogues at banana beer gatherings
As already mentioned, the research team visited several communities intermittently for a period of four years, which provided insights on community life, including formal and informal activities that took place. Banana beer gatherings are adopted to everyday lives in study communities. During the study, it was normal to find community engaged in health education sessions under the trees, and in temporary structures, on roadsides in the evenings. Community resource persons said it was the only possible way they could reach alcohol consumers. One would ask how serious did drunkard people take this information? The revelation that local brew spaces were considered valuable for community dialogue on HIV/AIDS was based on the fact that conversations were flowing, since people spoke freely and in a relaxed way about the subject. Probing further, on how banana beer gatherings operated, participants responded mockingly that:
“When we meet, we say HIV/AIDS is very painful… and it can surely make us leave our children orphans, but when we get satisfied, uh uuuh, people might do different things.”- (FGD, Irima village)
Such a response could imply that some spaces might have not been effective in delivering the messages. Nonetheless, they facilitated engagement with local communities, which made community dialogues possible, in relation of which participants could be able to reflect over again. Places for drinking were also identified as dialogue spaces for HIV/AIDS by the children in their drawings as shown in figure S5 in the OSD.
The children would say that as people in their community were drinking, dialogues on HIV/AIDS were created. However, as observed, this seems to question the possibility of a person who is drunken has the ability to engage meaningfully in collective identification, sharing and prioritisation of mitigation measures. However, such spaces as local beer places provide models that when used strategically, for instance before serious drinking begins, can in fact work as useful community dialogue grounds by the change agents, who have access to them. Even though, the nature, direction and intensity of conversations needed to be thoughtfully examined, to establish what ought to guide policy and practice on proper use of such spaces.
Dialogues in school Settings
At the schools visited, Parents Teachers Associations’ (PTA) meetings and school assemblies were commonly used spaces of community dialogues on HIV/AIDS problem. In one of the PTA meetings, the head teacher, after briefing the parents on the schools’ progress and requirements, he reminded parents to be protective of their children and support orphans under their care to attain education, in the following words:
“…..do not give away your daughters for money, cows and wealth, most of the men are either sick or would be sick soon. I encourage you to retain the children, especially the orphans and vulnerable girls in school; you will reap nothing out of your greed.”- (PTA Meeting, Kiswera Primary School)
Furthermore, on school assemblies, the Presidential Initiative on AIDS Strategy for Communication to Youth (PIASCY) policy was reinforced as revealed in interviews with participants. On a daily basis, children with support of teachers shared HIV/ AIDS messages on assembly, before going to class. ‘It has now become part of the curriculum,’ said one of the participants, who identified himself as a teacher at Kalongo Primary School.
In relation, Kids’ codifications portrayed school environment (figure S6 in the OSD**)** as spaces they ever shared HIV/AIDS messages. Further, participant observations indicated save the children facilitators engaging parents (p) and teachers, at Katuugo primary on children reproductive health issues. Their dialogues expanded ways to contain adolescent sexual and reproductive health challenges amidst HIV/AIDS scourge. Proceedings were captured:
P1 - I do not really know how our children survive sexual harassment on their way to school
P2 - May be we need to escort them every day (laughter)
P3 - That wouldn’t be bad, but, we will not be able to do any other activities
P1 - We ask the school to create boarding section
P4 – Are we able to raise the money
P3 – But even when we find the money, I doubt if our children can refuse money offered by sugar daddies.
Save facilitator- We need to think positive, HIV is here with us.
P1- How do we manage the situation, without much stress?
The discussion continued, after which the external facilitator provided parents with risk averting strategies in respect of the concerns raised. Parents’ committed themselves to utilise the knowledge shared. This form of dialogue was horizontal, and enabled shared learning. Other dialogues attended, such as teacher-pupil, school-parents, were indicative of hierarchical power relations based on age, status and authority among other factors.
Catalysts of community dialogue
Although both instantaneous and regular spaces provided safe environment for community dialogues, their effective use was linked to utilisation of catalysts34 (Figueroa et al (2002) - referring to a trigger that ignites dialogue about the HIV/AIDS question. When the catalyst creates information, each participant perceives and arrives at his/her own unique interpretation, understanding, and belief, which are expressed to others for clarification, to create a common understanding of how the problem should be addressed.35–37 According to,36 this catalyst is a missing element in most of the literature about development communication. The role of a catalyst in this research was important to harmonize experiences of those directly experiencing the effects of HIV/AIDS and those providing the needed helping skills, to appreciate a shared problem, which may be manifested in an individual, so as to make a collective input to address the concerns. The catalysts did not differ in instantaneous or regular spaces.
Audiovisuals facilitate effective dialogues
Observations of audio-visuals employed in the various spaces show that people irrespective of age, sex and status entered into dialogues basing on the visual tools. The community through their community resource persons, controlled the flow of their dialogues. The strength of audio-visuals is that, participants have open opportunity to learn and share insights of others in one place, drawing on each participant’s experience. It also promotes listening, which enables careful scrutiny of the subject. The other strength is that participants have the chance to talk, support of one another, ask and answer the questions relating to identification, sharing and mitigation of HIV/AIDS themselves, basing on what they have heard and seen. Audio visual tools identified by the study include print media, short films, testimonies, and theatre among others.
Print and electronic resources
This entailed display of reading materials especially on community days, such as reading days, child days, and AIDS day, among others. HIV/AIDS actors use both hard and soft artwork as catalysts in the different spaces as opportunities to fight the problem as shown in figure S7 in the OSD, showing poster displayed on the activity day.
Study participants indicated that;
“We distribute booklets for people to read and share the messages, which make it easy for us to carryout group counselling and promote more knowledge about the problem.”- (FGD Suubi Nyabaseka Village)
The messages in the display portray concerns of people suffering from HIV/AIDS, including education, dignity, justice and security. Important to note is that such rights are not different compared to others without HIV/AIDS, which suggests solidarity in addressing the problem. In fact, the difference is that one is carrying the virus but all have agency to contribute to solutions in equal amount. Other resources were young talk, straight talk, newspaper cuttings, newsletters, booklets, and charts distributed to promote informed dialogues, and organise mitigation interventions.
Personal testimonies in public spaces created understanding of the problem, from the roots of people affected and those living with a diagnosis of HIV. Testimonies of people individually or in groups who volunteered to share their experience of HIV and AIDS effects unveiled lessons to learn from as shown;
“I am 39 and HIV positive, I got married in 1997 when I was still a virgin and have never had sex outside the official marriage. When I gave birth to three children, who were girls, my in-laws advised my husband to marry a second wife who would give birth to male children. This is how I got the HIV. My husband died two years ago.”- (Jamie, HIV, positive mother)
Such testimonies were important for fighting stigma and for mobilisation of individual and collective efforts to mitigate HIV/AIDS effects. Those touched by the messages were at all times willing to mobilise and take part in mitigation activities. Kalangala District Secretary for Health, and the District Medical Officer of Nakasongola noted that, all spaces at district level were accessible to community members who organise themselves to go public, share their experiences of having the virus, and the importance of positive living. While most people fear disclosure, because of the likely stigma and discrimination, the fact that study community promoted open discussions was a sign of recognition of a shared problem.
Theatre, storytelling and comedy
Theatre, storytelling and comedy among others, were other stimulants of dialogue revealed by the study. Study visit to community, found an array of dialogues that evolved around street theatre, song, plays, drama, and poems. In addition there was sharing of pictures, as well as storytelling to publics to unfold HIV/AIDS reality as in figure S8 in the OSD.
Such accounts enabled open communication about HIV/AIDS, which exposed the problem widely. When people speak of HIV stuff, in theatre, stories, poems, comedy, the public is acquainted with the magnitude of the problem and the realisation that they need to join in the struggle. So, talking about the problem in this manner made it easier for local people to identify, share and make an input in addressing a shared problem.
Films worked as learning aids, information aids and also as community dialogue aids. Participant observation of the short film activity watched under a Mutuba tree, situated at the centre of Kiwembi Township, revealed extensive discussion. The community resource person screening of the 3minute films with HIV/AIDS messages to Kiwembi participants, mainly out-of-school youth, enabled brainstorming on the contents, which they matched with human behaviour at their village. The session was mostly learner centred, guided by some questions to inform their active involvement in dialogue:
Was there any challenge in the film?
Do these things happen in our village?
How does the message in the film relate to the community challenges?
How can we minimize or eliminate this situation in our community?
Participants would recall some messages in the film and compared them to actual conduct of people in Kiwembi community. In contrast to teacher based methods, participants took the lead. While some of them raised questions that they were able to answer themselves. Out of the prolonged dialogues that generated issues to be worked upon, participants constructed a preference-ranking tool shown in Table S1 in the OSD, which prioritised testing as an action point to mitigate the HIV/AIDS effects.
Participants further noted that;
“It is important that the couple tests together, because one may be infected or both and by getting to know, the couple will be able to plan for the family or even get on medication quite early.” - (Dialogue participants at Kiwembi)
Films as a catalyst of community dialogue brought forth information on HIV/AIDS and daily living, self-evaluation and enabled assessment of a community’s capacity to implement the action points, and how each community member could be involved.
Friendly Journals were another catalyst adopted in study communities to facilitate peer interaction, through sharing ideas and information on HIV/AIDS, among others. This innovation, as narrated by study communities, linked learning and sponsorship for poverty related interventions as an epitome of knowledge creation and sharing among and between communities, as in figure S9 in the OSD.
A brief description of how the study conceptualised the use of friendly journals as a catalyst for dialogue, is summarised here under;
“After exposure of study communities to a relevant training, cross visit and other initiatives, each participant would identify a friend -“learning partner” with whom they would further the conversation. In their interaction for instance, one writes on an issue arising out of their involvement in HIV/AIDS work or plans to undertake. The communication may also entail asking questions in order to learn from the learning partner. The writer sends a note and when the learning partner receives it, she/he reads and responds in a similar manner. Either party may initiate the dialogue. The process would continue until the learning partners no longer needed each other. They have several themes to write about, but this study’s interest was on HIV/AIDS mitigation.” (Najjuma 2019)29
In-depth Interviews revealed that, dialogue through friendly journals acquired an international face. Some friendly journals identified in figure S9 in the OSD, the children in study communities were communicating to friends in Italy. This novelty appeared to serve four purposes; to help children as participants’ master reading and writing skills, networking and sustaining linkages among local and external partners, while creating awareness on mitigation concerns through dialogues.
Envisioning meetings facilitate dialogue among actors
Envisioning provides the opportunity of harmonising stakeholder interests for collective engagements. The process enriches interactions through sharing perceptions, experiences, values, and resources aimed to forge a joint commitment towards mitigating the adverse effects of HIV/AIDS. The envisioning discourse reported here was one of a series, attended by the research team and it took place under a Mango tree at Kalangala District Farm Institute. It comprised of representatives from AAIU, district resource persons, and the community of people living with HIV/AIDS in Kalangala. The research team were invited to this particular dialogue based on their research interest. Participant observation revealed that although the dialoguers were of diverse backgrounds, it was difficult to notice these differences, because all were focussing on a common call of HIV/AIDS mitigation as presented here in part;
“Considering our position of being positive, how do we harmonise our interests and the interests of others in this area who are disadvantaged because of HIV/AIDS. For example, how do we get the services near to our homes? How do we identify, vet, and use a private clinic in the area in order to access ARV’s in a hard-to-reach area like our own?”- (Community dialogue with HIV/AIDS specialist, AAIU)
The process of envisioning centred on exploring some catalytic questions that were captured by the study;
What has brought us together?
Why do others start up collective work and then they do fail?
What are our expectations?
What does the network expect of support agency?
What sacrifices can members make?
How do we excite everybody to participate?
What strategies do we use to foster continuity?
How do we involve the district and neighbourhoods?
Why we should work as a team?
Despite the fact that most communities globally, attach stigma to HIV/AIDS, there were no indications of such in this discussions. Participants irrespective their sero-status freely used ‘WE’ as the catch word at times referring to themselves in the conversations and denoting ownership of the problem, which made sharing of messages fruitful, recorded in a socio-gram in figure S10 in the OSD.
In the diagram, talking is illustrated by back and forth arrows. Circles represent the people in dialogue, M for males and F represents females. The arrows pointing to the centre show communication to everybody and the side arrows stand for consultations or feedback. The pointer indicates the person being talked to. Drafting a mitigation plan with a budget emerged as the action point of the dialogue. This shows that envisioning enables jointly responsibility of participants for a process of understanding, reflection and mitigation of HIV/AIDS effects.
According to Freire2 dialogue is the encounter in which the united reflection and action of the dialoguers are addressed to the world which is to be transformed and humanised. This dialogue cannot be reduced to the act of one person’s depositing the idea to be consumed by the other participants. It is an act of creations. The struggle to participate makes dialogue possible10on identification, sharing and mitigation of HIV/AIDS concerns such as stigma, infections, access to services, accurate information, rights, and voice, among others.
We found that both instantaneous and regularly organised spaces promoted community dialogue on HIV/AIDS in a spirit that allowed all members to contribute their best, keeping everybody involved and active by making interactions inevitable. Such spaces unleash the ambiance that unpacks people’s views, clarify misconceptions, share knowledge, and experience, self-educate and come to know their sero-status. They create prospects for mutual learning among local people and outsider “experts”, which improves interactions and builds productive relationships for effective HIV/AIDS mitigation. Communities share information on innovations and existing opportunities by inviting knowledgeable persons who engage them. Important to note is that these spaces are not mere abstract, but real sites that societies use in their daily interaction. This practice is supported by38who argue in favour of creating a learning climate in a group in which all feel listened to and free to participate actively, recognising the need of any group if it is to get its task accomplished. In other words, this assumes commitment to solving the problem through building relationships and a means for humanising help.39
Adults went with their children, whenever they would meet to discuss and address community problems, which partly inducted children as active participants in the struggle to mitigate the adverse effects of HIV/AIDS. The initiative seem to have served the purpose of children’s security, teaching them to work in a spirit of volunteerism and orientation in adults’ way of interacting. The children raised their voices through visual techniques like children’s drawings as forms of their comprehension of spaces for dialogue on HIV/AIDS. In relation, Krampon40 argues that the basic assumption behind the development of children’s drawings is that there is a tendency towards realism. It is also connected with41 argument that symbols are the vehicles of thought. Symbolising enables people to store the information required to guide future behaviours.41 Thus, the importance of creating opportunities for children’s involvement as a matter of sustainability should be underscored. Further, while adults registered little indication of talking to their children on HIV issues, they had some trust in teachers to do it, which possibly explains42 the observation that open discussion with children on matters of sexuality is not culturally sanctioned. It also shows an indication to keep vulnerable children in school.
Regardless of the fact that collective agency applied in all spaces reached, results manifest gender inequalities, where by female participants were likely to be more present and seen, attributed to either their reproductive health needs or empowering methodologies used by external facilitators to foster effective gender relations. Empowerment has been described as a radical alternative to the traditional social work that stress adjusting rather than challenging existing conditions.43 The expression agency to borrow from,44 denotes activities done to bring about change and whose achievements can be judged in terms of a people’s own values, capabilities, objectives and vision, whether or not the assessment is done in terms of some external criteria as well. The opposite of a person with agency is someone who is forced, oppressed, or passive.45Agency reveals the uniqueness in each individual in collective effort, which contests46 who questioned the capacity of vulnerable groups to influence decisions making, and negotiate in equal terms. Yet38 suggest that, in order to get a task accomplished, it is important to consider feelings, and bring them out into open where necessary.
The differences and similarities in spaces can be marked by their concentration. It is clear that regular spaces seem to be more effective in comprehending the messages because they have a follow-up position. Instantaneous spaces were likely to reach more people the fact that they gathered everyone irrespective of invitation to attend. Despite these differences, all spaces in a community setting were deemed appropriate for dialogue on HIV/AIDS issues in considering the quality and creative use of catalysts. Results show that out of exposure to diverse catalysts, populations identified and shared information in small and large teams, to be acquainted on the magnitude of the problem and the realisation that they were a team in the struggle. So, the use of catalysts made it easier to harmonise ideas and the possibility of planning actions to deal with HIV/AIDS collectively. Lars Engeberg47 has equally argued that collective decision making should be analysed as an activity where different individuals come together to develop common ideas as well as an integrated part of social system in which existing ways of addressing similar issues carry much weight.
Although it is common among CSOs to portray local people’s perception of themselves as helpless, we find the approach of the two study institutions accommodating of local people’s capacities and resources, to enable them make significant contributions towards mitigating the HIV/AIDS problem. This study therefore promotes a unique form of interaction compared to many other approaches documented elsewhere, which erode local people’s potential and power to determine their destiny. The approach provides a model that can be adopted by community organizers in any other sector such as improved farming practices, to integrate voice of local stakeholders with an aim of promoting social transformation and sustainability.
Because communities are usually at the receiving end in conventional development practice, it explains the presence of a litany of unsustainable interventions implemented in Uganda. This research provides a detailed account of how communities interact to promote collective identification and sharing of HIV/AIDS concerns with a potential for successful mitigation interventions. We propose the adoption of community dialogue to existing policies and practices in HIV/AIDS for a more effective implementation arrangement, with a leading role of the recipients of services in the whole process of diagnosing, designing, and implementing solutions to avoid waste of scarce resources.
Children’s drawings can be considered mitigation actions with their own perspectives, which is in itself empowering to contribute their ideas and resources from an unfamiliar angle. Community organizers should be aware that the use of Child-friendly participatory tools increases communication of HIV/AIDS mitigating concerns and raises children’s voices which are often not herd in community improvement activities. Thus, in this age, where shared problems requires collective effort, children as social actors ought to be recognized as active participants in social services provision.
All in all, collective agency worked in all spaces reached that engaged both instantaneous and regular spaces in identifying, sharing and developing actions to mitigate HIV/AIDS effects. Children were put at the centre of community dialogues by developing their capabilities. The differences and similarities in spaces can be marked by effective delivery of messages and or ability to reach wider populations. Therefore, when creatively used, these spaces unlock local peoples’ potential for effective dialogue, and promote unique ways to inform policy implementation that unfolds resources and knowledge, which necessitate promoting the quality and creative use of catalysts.
Clearance to carry out the study was obtained from Makerere University, College of Humanities and Social Sciences. We would like to thank the communities of Kalangala and Nakasongola for their cooperation during data collection.
The doctoral study received financial support from Belgium Development Agency, which sponsored first authors’ training from which this article is generated. Action Aid and Save the Children supported data collection by providing physical guidance and transport to the field
The initial material resulted from the first author’s (NS) PhD work. Dr DK, one of the three supervisors at Makerere University, provided critical feedback, technical guidance during analysis, interpretation and writing of this article and in the process of identifying the journal.
The authors’ completed the Unified competing interest form at http://www.icmje.org/ disclosure of interest, available upon request from the corresponding author, and declare no conflict of interest.
Saidah Mbooge Najjuma
PhD Social Work Planning and Management
Department of Social Development, Ndejje University.
P.O Box 21848, Kampala Uganda
Tel: +256 772305563
[email protected]; [email protected]