In July the Community Organisation Resource Centre (CORC) convened a number of discussions with about 25 community organisers from informal settlements across the country to share their thoughts on what the problem is, and ideas on how it may be addressed.

This article is a thematic summary of those discussions. It is published in the hope that political leaders and public health officials might find some of their ideas helpful in developing better strategies for controlling the spread of this virus, and others in the future. The take-home messages are summarised at the end. They will not be unfamiliar to officials, but it is through hearing the frustration in the voices of the community members that authorities might be nudged into further action.

Is there a problem?

Yes. Almost everyone in the discussions confirmed that people in their communities were not taking Covid-19 seriously. This was manifested by people not wanting to observe social distancing, not wearing masks, drinking and getting drunk in groups, going about their daily activities in the informal settlements – particularly crowding into and around shops and spazas, and being in the streets and lanes without social distancing.

There are, however, a minority of people who live in fear, even terror, of being infected. Those who express this terror, fear that they will definitely die if infected and they don’t want any infected people to be allowed to stay in the community. Most of the discussants agreed that this anxiety was present in their communities too. The source of this perception, said Thozama from Makhaza, Khayelitsha, was the news coverage, the unprecedented scale of the government’s reaction to the pandemic, and to certain shocking images and imagined scenarios – such as images on TV of large numbers of graves being prepared, and talk of mass burials.

These attitudes i.e. not taking Covid seriously, not believing they are at risk, and being terrified of the epidemic, live side-by-side in the same communities though generally held by different members. The impression of the organisers is that the overwhelming majority do not take it seriously, and that those who are afraid tend to be older people.

The first theme, then, is why are people not taking Covid-19 seriously and what can be done about that?

First, it seems it is about knowledge.

Chadernnay (Eastern Cape, Food Relief Campaign) said so many people where she is working do not have electricity, so no radio or TV, and have not been getting other sorts of communications either. When pamphlets and billboards have been used, they have been in English, while many people are not literate. So they are simply uninformed and do not have the same experience that more city-based communities might have where Covid dominates the news media.

Mokgobo, in the North West, said this was similar in her communities. People don’t take it seriously because they don’t know about it.

Ndodeni, from an informal settlement in KwaZulu-Natal, said people did not have access to information through mass media and that there were almost no public education efforts in the community. Because households share water and ablution facilities, often with long queues at the toilets, there should specifically be banners and posters in vernacular languages at those facilities.

Mzwanele, national coordinator at the Informal Settlement Network, said that most people don’t believe it is a problem in their communities because they haven’t seen people getting sick with Covid. He quoted an isiXhosa saying: “Kufanele uyingcamle into ukuze ukholelwe ukuthi iyaphila” (you have to taste something to believe it really exists).

Emily Mohohlo from the Free State also said people in her community think it is just a flu and don’t take it seriously. “Education is needed.”

Beauty, from Rithabiseng informal settlement in Tshwane, said people there did not have radio or TV, hadn’t seen patients and had very little other information. She thought that if politicians wanted to persuade the community that Covid was serious, “they should come to the community and use public address systems mounted on cars to go through the community and explain the pandemic… daily. Like in election campaigns.” This would be more effective for communication and for indicating that politicians were taking this seriously.

She also said there was a perception that the fuss about Covid-19 was a political faction issue with some parties or factions challenging the government, and that this politicisation resulted in the community not trusting what they heard. She argued that it is important to find ways of demonstrating that politicians do not differ on the seriousness.

Nolwanda (Federation of Urban Poor, Western Cape) emphasised how pervasively this politicisation of the epidemic is influencing communities. She recounted a conversation with a recovered Covid-19 patient who had been hospitalised. The patient said that in discussions with other patients in the hospital she had come to believe that “the virus is not made by God but by politicians”.

Rosy lives in Protea South, Gauteng, which has been a hot spot of infection and where many people know others who have been infected. But in this case, she says there’s only been one community health worker “campaign” of education early on in the epidemic at a time when perhaps people were not ready to take it seriously. There have been no subsequent education campaigns and there is still widespread ignorance of the actions needed to prevent transmission. She said street life continues as normal.

It seems that the early campaign was associated with community screening and testing, but she says people who got tested (including herself) did not get told their results. She proposes that the community education campaigns need to be repeated regularly.

So one answer to the question why people don’t take Covid-19 seriously is lack of knowledge about the disease and possibly that information is offered when people don’t believe that it is relevant to them since they do not yet know of any cases in their communities.

There are reports from other communities that people do know about the disease and know that they are supposed to wear masks and keep their distance from others – but do not do this. Perhaps a classic illustration of this was from Sylvia in KwaNdebele. She says people do wear masks when they go into malls and public places because they have to. So they walk around with masks in their pockets. But while queuing outside the mall, and elsewhere in taxis and in groups, they will not wear their masks and they do not practice social distancing.

Other participants confirmed that this was common in their communities too. The discussion that followed on why people do not take preventive measures generated the following.

Why don’t people take preventative measures?

In many communities, it seems people just don’t believe it will happen to them.

Mzwanele, speaking from the Tsendane informal settlement in the Eastern Cape, reported that the general perception is that you can contract the virus in hospitals but that people are safe in the townships. There is also a perception that it only affects the old, so young people can ignore it. Ntombovuyo (CORC) confirmed that most people she meets think the virus is associated with age and race and that black people and young people are not at risk. “They don’t feel vulnerable and they do not care if the epidemic gets to other people… Some put their trust in personal sangomas.”

Rose, from Oukasie (North West) and the national coordinator for the Federation of the Urban Poor, said, “People don’t believe it will come to them. They think it is an issue for the government. When they see celebrities and politicians infected and die, they think it doesn’t affect poor people… [Also] there are many foreigners in Oukasie, and they say it is a South African issue not affecting them. People walk around with masks in their pockets. They roam around normally. They only behave when soldiers are around and being aggressive.”

Rose says they have tried pamphlets, tried going door-to-door, and it has not helped. She says, “There is now a view that the epidemic will end in August because the president said so – and so there is no need to act.”

One participant pointed to the 100% taxi occupancy policy and said this aggravated distrust in government. “If the government was not taking the distancing seriously, why should the community?”

So, this second set of explanations for not taking Covid seriously relates to misinformation, suspicion and lack of trust of the sources of information, particularly politicians, aggravated by political party and faction contestation about how serious the epidemic is, and how it should be managed. A key factor is that the publicity about high-profile individuals becoming infected, and the emphasis on the vulnerability of the elderly, has led to a perception that young people, poor people and even black people are not at risk.

One solution suggested was for members of the communities who have recovered from Covid-19, especially young people, to publicise the fact that they had been ill, and to discuss their recovery. We will return to this after looking at the problem of stigma and fear and the pressure not to disclose that one has been infected.

A third set of factors that appears to deter taking preventive measures relates to the difficulty of those measures themselves.

With respect to masks, some organisers reported that people could not afford masks and that they should be given away freely and in large numbers in poor communities. Others said that most people in their communities had masks because they now had to if they accessed any formal public building, but that people said they could not breathe when wearing masks. Masks were said to be too tight. Others complain that they cannot wear them for more than a few hours yet they would have to wear them all day at work – so when they are travelling or taking a break or shopping they stop wearing them.

The breathing difficulties when using a mask was a surprisingly common complaint and it would be worth investing some research into this to find out whether there are particular mask designs and materials that are more problematic than others, how important this is as a deterrent factor and thereby to design masks that will be better tolerated.

Anyone who thinks about life in informal settlements will know that it is impossible to self-isolate or quarantine in those settlements and even to effect social distancing. The shacks themselves are small and often crowded with poor ventilation; people have to walk about three times a day through the congested lanes to the ablution facilities; and there are queues everywhere – whether for spazas, public transport, water, grants or food parcels. Given these conditions, the community members said that people did not see the point in taking other precautions since it would not make any difference.

There is little that can be done in the short term about the conditions in informal settlements. The key intervention to reduce the spread of infection should be encouraging people with symptoms and their contacts to move out of the community to isolation or quarantine facilities for a period. This is in fact the policy, and a quick calculation of how many quarantine beds would be required to implement such a policy would suggest that a vastly greater number of quarantine beds would have been needed than were provided. And yet, the quarantine facilities have largely remained unused, since it is essentially a personal decision whether to take up the offer of a quarantine bed or to stay at home.

Isolation and quarantine?

This brings us to the fourth theme, viz. why are people so reluctant to go into an isolation or quarantine facility (I/Q facility) given that they could not self-isolate or self-quarantine.

Probably most importantly, as suggested by Rose (whose son had been ill with Covid), people think that if they have mild symptoms, they don’t need to isolate or quarantine their contacts. Others said, “People wanted to be looked after by their families”.

The attitude to I/Q is compounded by the problems of stigma. Blessing (Western Cape) said the fear of being ostracised and even forced out of the community if one was known to be infected was a real problem, so people who were diagnosed did not want to disclose their contacts because they knew they would be contacted by the health department and this would point back to them. (The Western Cape contact tracing teams find that a significant number of the cellphone numbers they are given – for patients and for contacts, are wrong.)

Thozama (in Makhaza) said if he had been screened and sent to quarantine, the community would not want him back, even after 14 days. He also shared that people treat infected people as if they asked for it. And people are concerned that if they go into isolation or quarantine and they get sick, they will die and will not be able to see their families again.

Mzwanele reported that some people had disclosed to him confidentially that they had recovered but would not make this public. His (Mzwanele’s) brother’s wife contracted the virus in Cape Town and was buried in Eastern Cape. The immediate family was aware of the cause of death. They didn’t inform the extended family until the day of the funeral when government officials and funeral parlour officials alerted everyone. Rose, having looked after her son through his illness, was now being approached confidentially by people in the community who were presumably looking after sick relatives, and being asked how she stopped her son from dying. To address the stigma and also the extreme fear of the disease, her son has made a video talking about his experience. He is also hoping to go on community radio.

It turns out that in most of the country, even the community organisers were not aware that I/Q  facilities exist and, if they had heard of them, they did not know where they were, how to access them and how much they cost (in fact they are free – with full board and catering). Sylvia said that she had heard that hotels were being used and she assumed that being in quarantine in a hotel would be very expensive.

There were many other misperceptions.

People did not distinguish between an I/Q facility and a hospital, and assumed that they would be put on a ventilator if they were isolated. They assumed that if they went to an I/Q facility, they would be detained and not free to leave until they were discharged.

Discussants also shared the view that community members see hospitals as dangerous places. The horror images of overcrowded emergency units and stories of hospitals not coping with the patient load have led to a fear of all health service associated facilities. They viewed hospitals and I/Q facilities as places where they would get infected if they were not already. Queen (KZN) said, “People think quarantine is a death sentence.”  Ndodeni (KZN) said people are scared to go to clinics for testing or even for their regular chronic disease treatments, and that mobile clinics should be going into the community to be easily accessible and encourage patients to attend.

Then there were particular concerns about leaving their shacks since usually the whole household would have to be quarantined thus leaving no one to protect their home from looting during their two-week absence.

Thus this failure to take seriously the need to isolate those who are infected, and quarantine their contacts is really a failure of the public health communication effort. When one thinks back over the public information about Covid, the focus has been intensively on social distancing, masks and regulation levels, with hardly anything on the purpose of isolation and quarantine, and the opportunities to do so at no cost if one cannot self-isolate or self-quarantine.

The efforts to keep secret the actual facilities that are being used for I/Q, intended to protect the hotels’ brand and reputation, has had unintended consequences in leaving the population ignorant of the availability of the comfortable accommodation and catering that was provisioned. It has also led to conflation in the public mind between the hospital facilities with all their associated dangers, and the more pleasant and safe Q/I facilities.

There should be a campaign to publicise how individuals and their families can access these facilities while preserving their privacy.

Another alternative, close to communities and likely to be more widely accepted (based on experience in other countries with Ebola) is community care centres. These are relatively small facilities – houses that can accommodate 10 to 20 people in or very near the communities, where people can voluntarily isolate and quarantine, and that are provided with services such as food and regular health checks.

The Covid-19 infection is likely to be with us in communities across the country for the next couple of years, and as the economy and social life returns to normal, isolation and quarantine will be the primary element to control the epidemic (but useless if not only done effectively). Authorities should consult with communities about establishing these community care centres as a long-term solution to providing I/Q facilities that will encourage wide acceptability and uptake.

Recommendations from community organisers

In conclusion, the following is a summary of some of the suggestions from these community organisers:

• Much more information should be provided through direct communication on the ground in informal settlements. This should include pamphlets, posters and billboards in the local languages; township drive-through campaigns with mobile PA systems and outdoor presentations to bystanders; use of community radio; educational material in key public spaces such as ablution facilities, spazas.
• The epidemic has to be made real and personal to people by having them hear about it from peers and local community members, especially patients who have recovered. Videos on WhatsApp and social media, and interviews or paid spots on community radio could be encouraged. Aside from reflecting the diversity of the population in these personal stories, there should be a particular effort to feature young people. When there are increases in local cases, local statistics should be provided every day to impress upon the community the state of the epidemic locally.
• Community health workers, especially if they come from the same community, as is often the case, should go door-to-door to educate household members. This needs to be repeated regularly, and especially when there are a few new cases.
• Messaging should be developed that addresses the sources of stigma.
• Messaging needs to avoid overstating the severity of the disease and risk of death for most people.
• Mask wearing should be supported by the distribution of free masks.
• Research and develop masks that are better tolerated, and can be worn for a long time.
• There needs to be much more publicity and focus on the importance of isolation as soon as symptoms occur and regardless of how mild symptoms are, and of quarantine for close contacts.
• The policy should acknowledge that even if not all members of a household in an informal settlement can leave their home to stay in an I/Q facility, the more that do so the better for reducing the spread in the community.
• Provide information about the I/Q facilities that the state provides, the fact that they are free, the services provided, that they are different from hospitals and clinics, that the individual has the freedom to stay or leave at any time, and publish contact numbers so people can make direct enquiries on how to access them.
• Work with communities to develop community care centres for isolation and quarantine.
• While statistics routinely report how many people have recovered, consideration should be given to reporting more positively, but honestly, on the successes of hospital care and what happens in hospital – especially reducing the fear of ventilation which relatively few patients require. Hospitals need to be seen as life- saving. This could be reinforced by individuals from the community who have been hospitalised telling their stories on social media. DM/MC

Max Price (CORC board member) and Charlton Ziervogel (CORC managing director). With input from: Beauty Mtshweni (FEDUP leader, Gauteng), Blessing Mancitshana (CORC staff member). Chadernnay Glenn (CORC staff member). Emily Mohohlo (FEDUP national coordinator, Free State), Mokgobo Tladinyane (FEDUP leader, North West), Mzwanele Zulu (Informal Settlements Network national coordinator, Western Cape), Ndodeni Dengo (ISN leader, KwaZulu- Natal), Nolwando Mayongo (FEDUP leader, Western Cape), Ntombovuyo Sibutha (CORC staff member), Sibongile Queen Mkhize (FEDUP leader, KwaZulu-Natal), Rose Molokoane (FEDUP national coordinator, North West), Rosy Mashimbe (FEDUP leader, Gauteng), Sylvia Nduli (FEDUP leader, Mpumalanga), Thozama Nomnga (FEDUP leader, Western Cape).