What role did community conversations play in increasing HIV competence amongst participants? The data suggest that, while community conversations are not a magic bullet, they potentially contribute to developing HIV competence through: (1) enabling participants to develop concrete and practical action plans to combat stigma and better support PLWHA; (2) challenging participants to think creatively and take positive action with the encouragement of facilitators; (3) working towards a common goal and being able to discuss taboo subjects; (4) encouraging participants to move from seeing themselves as passive recipients of HIV-related information to active problem solvers, and (5) providing an opportunity for participants to conceive of ways to move from information to action.
Each of these points is discussed in detail in turn in Part I below. Part II discusses the contextual factors beyond the control of community members that (6) facilitated and (7) hindered the capacity of community conversations to build HIV competence. On the one hand, the increasing availability of ART from late 2008 was a particularly supportive context for the goals of the intervention. On the other hand, negative contextual features, particularly severe poverty, poor harvests and political upheaval, limited the feasibility of action plans.
The conversations frequently generated debate and storytelling among participants, with some people recounting highly emotional—sometimes tragic and sometimes inspiring—personal stories of coping with HIV/AIDS among their family or friends. Community members came up with many concrete action plans and reported some success at enacting these plans during follow-up conversations. In addition, there was evidence of critical discussion with participants debating whether or not HIV stigma existed and if it could be reduced, the roles of men and women and young and old people in the spread of HIV, and the practicality of various ideas of better supporting PLWHA and reducing new infections, discussed further below. Participants frequently told the facilitators that participation in the conversations was improving their capacity to respond more positively to the challenges of HIV by breaking the silence around stigma and encouraging discussion. There were countless instances, particularly in the third round of conversations, where participants described a great deal of change in the community’s attitude towards HIV, with many suggesting that the community conversations had played a role in this.
Before detailing our specific findings from these community conversations we must emphasize that there are many caveats about the limitations of reported attitude or behaviour change in the HIV/AIDS field. Participant reports cannot be taken as conclusive evidence that changes occurred in the broader communities outside the conversations, or that any changes can be attributed to the conversations. Participants may have felt an incentive to please the facilitators by emphasizing the effectiveness of the intervention, perhaps in hopes of maintaining links to the facilitators or accessing future assistance. Individuals may have sought to exaggerate their virtues in order to impress other participants. Recording the conversations may also have inspired people to present themselves in a particularly positive light. In addition to features of the within-group dynamics, group participants themselves referred to countless other environmental factors, outside of the group contexts, that enable or frustrate community efforts to cope effectively with HIV, discussed in part II. In the local context, a particularly significant development between rounds one and three of our groups was the increase in ART availability in the region through the efforts of the Zimbabwe health ministry and foreign donors. Such a significant and positive external event would have strongly reinforced group efforts to promote positive and creative dialogue and HIV-related action plans.
In this paper, rather than focusing on whether community conversations changed behaviour or attitudes in the community outside of the conversations, we are concerned with examining the extent to which community conversations were able to function as social spaces for critical thinking and the development of action plans amongst participants, which Freire would argue were a necessary precondition for community level change. However, as emphasised above, we cannot claim that these are a sufficient condition for behaviour change. We acknowledge that a range of other factors – from situational factors to individual differences amongst participants – would mediate the translation of plans into actions that might result in positive health outcomes.
Part I: In what ways did community conversations contribute to HIV competence?
We now present our detailed findings on the five specific elements of community conversations that appeared to facilitate the building of HIV competence in our study.
(1) Conversations enabled participants to develop concrete, practical action plans to better cope with HIV
An HIV competent community is one in which members conceive of concrete ways in which they can contribute to better supporting PLWHA, reducing stigma and new infections, and encourage access to available HIV testing and treatment services. Our findings suggest that the community conversations (CCs) were effective in supporting participants to jointly come up with possible new strategies to cope with HIV: participants brainstormed how better to care for PLWHA, how to reduce HIV stigma and how to encourage prevention, testing and treatment. For example, some participants said they had decided to distribute condoms and to teach people “that AIDS is not a curse from God, but just a disease” (JO, male, Time 3, StA). In other instances, participants collaborated to develop more effective means of helping PLWHA. In the following, SY offers food assistance and his offer is taken up by MA:
SY (male): I want to say that I might be out of touch on some of these things because I am actually busy with work at my plot most of the time. But I want to ask anyone here to let me know if they find any challenges with regards to food for any of the patientsa they visit. I am more than willing to assist with food. They can tell me, I have maize which I think can assist others in need. So next time when you visit let me know what challenges you have where I may assist, I don’t mean to say I will give everything you need but I will definitely do something about it.
MA (female): I also want to thank [SY] for offering to help, I also have a certain couple who are HIV positive and … their worry is food. So [SY] I will definitely approach you after this session for those people. (Time 3, StA)
Participants also developed concrete action plans such as taking turns in maintaining vegetable gardens for food to donate to PLWHA and approaching church leaders to encourage additional discussions about HIV:
This has been a very hard year and we really had to struggle because sometimes these patients expect to receive some material assistance over and above our prayers and counselling and keeping them company. … That’s why we came up with an idea of gardens so that we can supply them with vegetables whenever we visit them. (DO, female, Time 3, StA)
…In our church I have approached my pastor and the bishop who came here after you guys [the group facilitators] left and I put the issue of AIDS forward to them. They received my message very well and began to encourage people in the church to set up a fund that is meant to benefit HIV/AIDS sufferers. (EU, female, Time 3, StB)
Other concrete strategies to help reduce stigma and help PLWHA included: helping bathe and cook for the children of PLWHA, donating fresh milk and firewood as well as vegetables to families with HIV-positive members, praying for PLWHA (a simple but significant way of showing kindness), ploughing, planting and harvesting the fields of people too sick to do so themselves and maintaining normal community relationships with HIV-positive people (such as continuing to visit their homes and ensuring they are able to keep their positions in the church). For example, ME presented her simple but profound idea on how to approach PLWHA in non-stigmatizing ways:
ME:I think we should at least try to be free to these patients and get them to talk, to be friendly and avoid viewing them as helpless patients, which happens when we show a lot of pity for them. If we were friends we should see them as our friend and try to talk them as if nothing has changed about them. (female, Time 3, NB)
Many participants had been helping care for PLWHA within their home for years before the community conversations began, but said that they had previously felt constrained in talking openly about their experiences given the very high levels of HIV stigma. Through having the opportunity to speak about the needs of PLWHA and developing strategies to address these needs with community members beyond their immediate family, participants were able to reframe HIV from a family-level issue to a community-level issue.
Whilst participants proposed some strategies to reduce the spread of HIV and promote testing and treatment, these ideas were often not as concrete or practical as their strategies to better support PLWHA. Many planned to verbally encourage people they knew who to suffered repeated illnesses to go for testing and warn young people against pre-marital sex. A few people reported having tried to convince sex workers to stop selling sex. These strategies were vague, taking little account of the underlying social and economic drivers of risky sexual behaviour. The strategy of condemning the risky behaviour of others is often used to distance those who condemn from a sense of their own personal vulnerability (i.e. focusing on young people or sex workers as those at greatest risk of HIV, rather than acknowledging how people ‘like them’ were also at risk of infection).
Nonetheless, participants did share some practical solutions on the subject of prevention, testing and treatment. Most commonly these included helping people get to the clinic through donating money for transportation or helping to physically carry them if they were very ill; getting community leaders (village chiefs and church leaders) to talk more about HIV in forums such as funerals and Sunday services; and strategically accessing external support (mainly NGO help) for the community. This latter idea was mostly exhibited through participants asking the facilitators to run the same intervention in additional areas, such as schools and churches. For example, one participant said: “…you guys can make a difference if you take this [CC] programme to schools” (AI, female, Time 2, StC) and another said “I think they [young people] also need to be targeted with programmes like this one because when we try to warn them they would just brush aside everything we say as just rhetoric. They don’t value what we say” (OT, female, Time 1, NB). Participants recognized the facilitators as a link to resources and knew that their symbolic status added salience and credibility to HIV messages and thus appealed to them to help the community.
Developing concrete ideas regarding how to help the community better support PLWHA and encourage prevention, testing and treatment was a positive process for two reasons: first and most obvious, having an action plan increases the likelihood of implementing positive changes because participants have concrete ideas of what they can do. There were many reports by participants in the second and third conversation rounds suggesting that they did in fact take up these action plans. Second, by encouraging the development of action plans, participants began to frame HIV as something they could positively influence.
(2) Participants were encouraged and challenged by involvement of outside facilitators
Formal accounts of the community conversations approach emphasise the use of a trained local facilitator (Shetty, 2007). In this regard we diverged somewhat from the formal guidelines. While both our facilitators were Zimbabwean and spoke the Shona language of the participants, neither of them had personal links with our two study communities. Furthermore, both of them were university graduates and employed in professional research jobs whereas the CC participants were less formally educated and farmers or manual labourers. Our findings suggest that a key driver of community conversation success was participants view of the facilitators as high status community outsiders. Community members appeared to trust and relate to them but also expressed respect for them and gratitude that they had come to the region and cared to help. Their presence seemed to appeal to participants and strengthen the effectiveness of the conversations for three main reasons, discussed below.
Participants felt motivated by facilitators and inspired to act
Respondents repeatedly said that the involvement of the facilitators in the CCs inspired them to put their plans into action. They said that they were keen not to ‘let down’ the facilitators, given the trouble they were taking to implement the intervention.
TH: We talked about HIV at community gatherings and gave soap to PLWHA so that everyone in the community can see what you have been teaching us. Since you came here there is now a big difference. So we wanted others to know that there is this programme. (female, Time 3, StB)
Participants seemed to take the expectation that they implement their action plans very seriously:
AN: I visited someone with HIV and cleaned her home because we had been taught by you that we should help those who are sick, so I did it so that I can put what I have learnt in practice, and I also wanted others to know how they can treat their patients. (female)
PH: I also helped because you taught us to do that. (female, Time 3, StB)
It is noteworthy that participants mentioned having been ‘taught’ when CC facilitators specifically avoided imparting any HIV related messages or suggesting strategies. This could indicate that local people were keen to give credit to the facilitators for gains made. It could also indicate that participants perceived having been taught when in fact the CCs had drawn out latent understandings and conceptualizations already present among the group.
Participants felt valued, not forgotten
At the time when the CCs were held, many foreign NGOs had ceased operations in Zimbabwe due to the unstable political and economic climate, and opportunities for community group meetings and activities were restricted by political conflict and laws requiring police permission for public gatherings. Against this background, participants expressed a sense of ‘honour’ at having had the opportunity to participate in the groups, and an associated sense of responsibility to try to generate some positive community gains from their involvement. Participants expressed a sense of having been abandoned by other organizations, as the following quotations illustrate:
NB: They [an NGO] used to give but not on monthly basis, but they have just vanished (SE, female, Time 2)
NC: They [an NGO] stopped some few weeks before the March elections and they have not resumed their activities since then (SI, male, Time 1)
The ‘participation fatigue’ that is often cited as undermining peoples motivation to engage in AIDS programmes in other contexts (where participants tire of engaging in an on-going community intervention, due to a growing sense that the effort of attending outweighs the benefits)  did not appear to be an issue. In contrast, participants were very eager to engage with the community conversations and were thankful and heartened to see outsiders come to help.
MA: I just want to thank you guys for coming here, it shows a lot of commitment on your part, and I hope this is not the last time we are seeing you here and we hope to move together as we fight stigma. We hope soon you will be able to come to our church and give a talk as I requested. I hope you will consider that request. Some organisations who used to work here have completely forgotten us because since the days when they were stopped by the political situation we never saw them back, we just hope they are considering coming back again. (male, Time 3, StC)
With so few resources coming from the outside to assist their communities, the presence of these facilitators appeared to represent a valuable link to external support and evidence that poor rural people had not been forgotten.
Facilitators challenged participants to think in new ways about HIV issues that were locally seen as normal or unchangeable
The facilitators performed another role that appeared to enable these conversations to spur critical thinking and the development of feasible action plans: they challenged normative worldviews and limiting behavioural repertoires. In this respect it appears to have been vital that outsiders injected new ideas into the CC dialogues. As the following quotations illustrate, the facilitators took care not to impose new ideas in a prescriptive way, rather seeking to feed them into the discussions to serve as the raw materials for the development of new ways of being and seeing.
The following dialogue (Time 1, NC) shows the facilitator asking critical questions of participants to encourage them to move away from a simplistic understanding of an HIV-related issue---in this case young people’s promiscuity and associated behavioural problems, such as acting ‘spoiled’ (i.e. not helping at home and desiring consumer goods), acting ‘sassy’ (i.e. not adhering to parental instruction) and skipping church. One participant, with the agreement of the larger group, presented the opinion that the government was contributing to their children’s bad behaviour by enacting a law that recognised people over 18 as adults, and therefore beyond the legal control of their families. Blaming this law enables community members to avoid discussing local issues leading to youth promiscuity, and fails to admit that ‘youth promiscuity’ concerns children much younger than 18 years. The facilitator asks questions to get participants to think through their understanding of the issue:
Facilitator: You are the ones who are facing all these challenges; what do you think should be done?
NI, male: … I think the government has also a role to play. I think the government is enacting some laws that make it hard for us to control our kids.
Facilitator: Which laws are these?
NI: The government says that at 18 years the child is now free to do whatever they want… [This law is on the legal age of majority for voting] That’s when our children begin to tell us that they are adults and no longer want parental guidance. Ladies, am I not telling the truth here?
[Some noises suggest agreement]
Facilitator: Do you mean your youths are only giving you problems when they are 18. And before that they would have been well behaved all along?
NI: They begin [misbehaving] at around 14.
Facilitator: So would the same law cover them?
The facilitator did not propose any alternate understanding and did not teach or impose his views. Instead, he gently pushed participants to see the issue in a new way. After the above exchange, the participants came up with other ideas (rather than blaming the law recognizing adulthood at age 18) to address the risky sexual behaviour of young people. Ideas included adding more Christian education to the schools and encouraging parents to be stricter with their children. While these ideas are not necessarily revolutionary, they are better than blaming an unrelated government law and they show evidence of participants thinking of community action plans to reduce risky sexual behaviour among young people.
Participants emphasized how deeply changed they were by taking part in the community conversations and linked the experience closely to the facilitators. For instance, one participant said: “You gave us the impetus to do this, you made us do this and we can't stop it now” (AN. female, Time 3, StC). As mentioned earlier, we must consider the chance that participants may have been overemphasizing the impact of the intervention in order to please the facilitators, perhaps in hopes of ensuring future visits and programming. Nonetheless, as KU, female, below, suggests, being questioned by outsiders often forces new ways of thinking and seeing the world, something participants valued and wished others could experience:
KU: I encourage you to even come to our church and talk to people the way you were talking to us--by asking some questions we learn a lot and one would wish that everyone could get this opportunity. (female, Time 3, StC)
Participants frequently asked the facilitators to run the same intervention with additional groups. These requests suggest that participants valued the community conversations and believed others in the community would also benefit from participating.
(3) CCs constituted a forum in which people could develop sense of community, common purpose
Bringing community members together and encouraging them to discuss their local strengths and challenges appeared able to bolster a sense of common purpose. This was particularly evident in Beacon Hill, a community of more transient traders and informal labours, without the same level of entrenched family and neighbourhood ties as the more agrarian St Magdalena’s.
TA: Most of the people in this community are just resident here; they have relatives far away, so they also feel loved when we help them, people become more united and feel more related than they are. I am sure your coming here has helped us to begin to feel like we are just all related. I think you have helped us to bring us together and begin to see other people in this community as family even though we are not related. (female, Time 3, NB)
TE: After you left us last time we sat down as a group and decided that we should work together and coordinate our efforts, so we agreed that we meet regularly and talk about the patients that we would be having in this community from time to time so that we find ways of helping them where we can. Many people in this community come from other areas – and though we are strangers we decided that the only source of our help is each other. So we decided that we should visit HIV/AIDS sufferers and bring them what we can afford, sometimes we go to see the patient and ask them what they want to eat, then we try to make their desired things available. (female, Time 3, NB)
Participants also commented on the conversations’ role in unifying church groups and helping HIV-positive people become more open about disclosing their status:
TH: … Since you came here we have been holding inter-church gatherings to make sure everyone is on the same footing. These groups have brought more unity among churches, and it has recently been said all churches should also talk about HIV/AIDS during their services. Now it seems HIV/AIDS sufferers are now feeling proud. Now that you have come here they will say “we have HIV” because once they say that people begin to be very helpful. (female, Time 3, NB)
While community conversations need to take place among people who already consider themselves to be united as a community, our study suggests they can facilitate a deeper sense of collaboration and common purpose amongst participants.
(4) CCs encouraged participants to move from passive recipients of HIV-related information to active problem solvers
Participants credited the conversations with helping them envision themselves as agents who could contribute to building local HIV competence. Many mentioned that local knowledge of HIV was sound and there was no need for more information. Instead, they expressed a lack of collective agency to move from information to action.
SI: Your coming here is helping us with a lot of things. Though we knew about HIV/AIDS we really never thought we could also do something ourselves until you came and talked to us. I personally was at least doing my little part but I never thought we could actually work as a group and achieve something. Now I find that when we go as a group we lighten the burden very much for the care giver. The caregiver is normally used to only seeing one visitor after a while. When we visit, the women start washing and cleaning the house, while the men will help to lift the patient, changing their position (male, Time 3, StA)
KU below again emphasizes that the conversations not only taught him about HIV but also made him think critically about his own capacity to do something:
KU: I have learnt a lot from attending your sessions. I have learnt that I should do something to assist HIV/AIDS sufferers in our community. After I took it to our church we began visiting HIV/AIDS sufferers regularly - bringing whatever small things we can, be it a piece of soap or just some bananas, and continuing to visit and pray for them. Some patients had food but needed assistance to stand up or be carried to the toilet, so I and my group assisted some people in that way. Sometimes we just talked to the patients, or helped them fetch some firewood. We were trying to give them hope. (female, Time 3, StA)
JA’s statement, below, gets to the heart of the value of community conversations:
Action speaks louder than words. People are now saturated with information so I will try to show what I mean by being extra good to patients. (JA, male, Time 3, NC)
At this stage in the epidemic, people are ‘saturated’ with information about HIV. For JA, the CCs offered the possibility of turning such information into action.
(5) Community conversations reduced the silence and stigma surrounding HIV
By bringing people together and encouraging open discussion of HIV, community conversations reduced the silence surrounding HIV. Participants shared personal stories about HIV and came to see that almost every family was somehow affected by the disease. In the following, CL comments on how prior to the programme, supporting PLWHA were seen as a private family issue rather than a community responsibility:
[The community conversations] have helped us to be more serious on taking care of the patients. It has helped us to realize that they are people just like us, they need us, they need our love. Because long back we use to think that the only patient we should help is someone who is within my own household, but your coming helped me to realize that I should take care of everybody, I should help. (CL, Time 3, NC)
Bringing people together to talk about HIV with facilitators who ask challenging questions about the status quo and encourage new ways of thinking can break the silence and reduce stigma. Ethel (below) reflects that the discussions have made it easier to talk about HIV:
…Now we know how we can work together. We are no longer shy or afraid to talk about HIV/AIDS. You have helped so much and now we can discuss and talk to each other freely and now we are able to continue meeting as a group even after you guys have gone. You guys have made us mature and this had moulded us by getting knowledge and skills from sharing with others. (ET, female, Time 3, StB)
The conversations appear to have forced discussion about HIV and enabled participants to reframe their understandings and attitudes towards PLWHA. WI (male, Time 3, StA) reports that the conversations have “been very effective in changing how we perceive HIV sufferers.”
Part II: Contextual influences that facilitated or hindered effectiveness of the community conversations
HIV competence of a community is influenced by a complex array of factors that lie beyond the reach of a single specific intervention. A large research literature highlights contextual drivers of community responses to HIV, such as systemic poverty and entrenched gender norms. We now turn to examine contextual factors that (1) facilitated or (2) hindered participants’ efforts to implement their action plans.
(6) Facilitators: ART availability
In the third round of CCs, participants repeatedly referred to the role of ART availability in bolstering their efforts to implement the action plans formulated in the CCs. Participants closely linked a perceived reduction in HIV stigma to the availability of treatment. For example, in the following quotation, AM links improved levels of testing and reduced stigma to opportunities to access ARVs:
AM: There was a person we didn’t think would survive into the next month, but we encouraged them to consider going for HIV tests and to see the doctor. Now that person is looking very healthy. We have also asked the doctor to make regular visits so that St Magdalena’s people no longer need to go to R to collect their monthly prescriptions or for medical check-ups. So I think what you have done here is working very well, since you have been here we go about our villages talking about what we have learned and encouraging the sick to get tested so they can be put on ARVs. (female, Time 3, NC)
AM attributes this change to the CCs; however, if it weren’t for the newly available treatment options, the idea of encouraging people to go for testing would not be as compelling. The knowledge that treatment is available reduces the stress and trauma of finding out one’s status, opening up the possibility for HIV-positive people to return to health, reducing the burden on families and communities. DO, in the following quotation, reinforces the link between improved community attitudes towards HIV and treatment availability:
DO: Now that we have the information and the facility where people can access ARVs at St Magdalena’s, I think people are beginning to realize that HIV/AIDS is not a death sentence (female, Time 3, StA)
(7) Hinderers: Poverty, poor harvests, and political upheaval
As stated above, the late 2000s when this research took place were particularly challenging for Zimbabweans. As AN explains, referring to the impacts of hyperinflation: “…this money has been devalued so much that you cannot buy anything with it; so poverty has really limited our efforts” (AN, female, Time 2, StB). On top of hyperinflation, as AL (male, Time 2, StA) explains, the region faced several seasons of drought that severely reduced harvests: “…This year there has been drought so much that even the well-known crop producers did not harvest anything.” Poverty and drought curtailed many efforts to increase visits to provide support to PLWHA. PLWHA and their families often were in desperate need of food or money for medicine. Visiting their houses empty handed was considered both culturally inappropriate and callous, making it hard for conversation participants to implement plans of increasing social relations with PLWHA.
KT: I think the major challenge [in acting on our CC plans] has been poverty that made it difficult for us to meet the expectation of the patients we visited. The most important thing that we also failed to make available has been food and a decent or good diet. Unfortunately we had a very poor harvest. (female, Time 3, StB)
Poverty also reduced the capacity of community members to offer physical care to PLWHA, because carers were unable to access gloves. Since people were understandably highly reluctant to touch open sores and human waste without gloves, they were often hesitant to visit the homes of very sick people to offer assistance, further isolating PLWHA and their families.
NA: Sure, sometimes we go to see these HIV/AIDS sufferers and they would have messed themselves but we no longer have gloves to use we find it hard to handle that. My honest request is that if we can only get a regular supply of gloves. (male, Time 3, StC)
Moreover, poverty and hunger fuelled the risky sexual behaviour that causes HIV to spread, particularly by creating conditions in which young women engaged in transactional sex with older men:
VE: Our efforts to give information to young people are often hampered by poverty. Our young girls think that if they go out with older man they can get what they want and all their poverty can be a history. All these hardships associated with economic situation makes it hard for young people to change. (female, Time 3, StA)
The difficult political situation in Zimbabwe was another very salient contextual feature that frustrated participant efforts to help to PLWHA and increase discussions around HIV issues. As mentioned above, it led many NGOs to withdraw from the country, removing much needed HIV awareness programs and food supplementation initiatives. Moreover, laws requiring police permission for people to gather in groups inhibited joint activity and efforts to raise money for PLWHA:
LA: Some of the problems we encountered recently, while a lot of AIDS patients had openly told us their status, so we embarked on a door-to-door campaign to raise money for these patients but recently the political environment was not enabling at times being accused of trying to raise money for the opposition party. (female, Time 2, NA)
MA: We had a problem because visiting patients was not easy due to the tense political environment, where it was not easy for people to visit these patients as a group. (male)
ZA: That is true to such an extent that one day when I and a small group of church members had visited a certain patient and we were approached and told to call off the visit in case it was seen as a political gathering - rather than a small group of church members going to see a patient. (female Time 2, StA)
Community collaboration and dialogue are absolutely central to the community conversations approach-and to the idea of social change in general. Limits on community gatherings restrict peoples’ opportunities to develop or implement action plans to improve local responses to HIV.