WEBINAR 27 OCT 2020: Food or Data? Restricted young lives during COVID
PRESENTER: Dr Sarah Bernays
Prof Kate Steinbeck [00:00:47] Welcome to our webinar from the NHMRC Centre of Research Excellence in Adolescent Health. I'd like to acknowledge our partners who take part in our research. And we're all here to champion the teenage decade for what it is - a great time of opportunity. We acknowledge the traditional owners of the country throughout Australia and recognise their continuing connection to land, waters and culture. We also pay our respects to elders past, present and emerging.
Prof Kate Steinbeck [00:01:25] Just a few small housekeeping rules to remind you that everyone's microphone is muted at this stage and will remain muted. So you've got two ways of communicating with us. First, with the chat function and then with the question function. So chat at the top right and questions at the bottom. You can give your questions at any time and our speaker will be able to answer them at the end. So there's where the question box is.
Prof Kate Steinbeck [00:02:03] And now it is my pleasure to introduce Dr Sarah Bernays. Sarah is a senior lecturer in global health at the University of Sydney's School of Public Health and Associate Professor in Global Health at the London School of Hygiene and Tropical Medicine. And she's actually going to speak to us today on 'Food or Data: restricted young lives during Covid, lessons from her community-based research in Africa. And welcome, Sarah. We're delighted to have you here today.
Dr Sarah Bernays [00:02:41] Can you hear me OK, Kate? I'm assuming everyone can hear me. Thank you very much, thank you so much for having me. It's a real pleasure to join you all. I'm going to be talking about lessons from our community based research with adolescents in South Africa, Uganda and Zimbabwe, where I've been working with the same institutions for the last decade or so. And I'm going to start off my talk by kind of considering where we are in relation to adolescent sexual reproductive health in resource-constrained settings, and thinking about what have we identified as being some of the core ingredients that will support engagement in sexual reproductive health services in these contexts. And then I'm going to go on to kind of characterise the impact of Covid-19 prevention on sexual behaviour and access to services in these settings, before moving on to think about how we are adapting service delivery within the context of Covid-prevention measures. And I want in particular to focus on the limits of virtual support in these contexts and also how the the process of having to adapt our services has elucidated what elements are required to constitute an adolescent-friendly service which encourages sustained engagement.
Dr Sarah Bernays [00:04:11] So, although I work broadly in sexual and reproductive health and mental health as it relates to infectious disease, the key area of focus for my presentation today will be about HIV. So this is no doubt familiar to many of you, but just a quick recap. The adolescent HIV epidemic is not under control. About 90 percent of the 2.1 million adolescents living with HIV reside in sub-Saharan Africa. And there's a complex intersection between weak economic opportunities and sexual risk, which render young women in particular disproportionately exposed to HIV risk. A youth bulge in Africa threatens to increase new HIV infections further and across all the primary HIV clinical indicators - getting tested and being diagnosed, getting onto HIV treatment once diagnosed and adhering to effective treatment so that the virus is suppressed or undetectable within the blood - young people are doing less well than any other age group. So it's an absolute priority for efforts to address global HIV that we address the sexual health needs of young people in these settings.
Dr Sarah Bernays [00:05:24] I selected four of my current studies from within my sexual and reproductive health research programme to draw on for today's presentation. One of the projects is a very recent World Health Organization global consultation that we did between July, and we reported our findings to inform the Service Delivery Global Guidelines this month, and that consultation spanned 45 countries. But the majority of my work on this topic is concentrated in sub-Saharan Africa, specifically in South Africa, Uganda and Zimbabwe.
Dr Sarah Bernays [00:05:58] So to give you a bit of context, I just want to explain the four studies that I'm going to be drawing on. I'll do that very briefly, I hope. So, the first study is an intervention called Lending a Hand. That's the product of five years of formative and co-design research with young people in communities in rural areas of Uganda and South Africa. And what we have done with them is to design a HIV prevention intervention, which is to engage with high-risk mobile youth in the age range of 16 to 24 years old. And what we're trying to do here is to engage specifically with the limited economic opportunities which engender substance use and gendered sexual risk. And this is being done, as I said, in Lukaya, which is a south-west rural area of Uganda, and in KwaZulu-Natal in South Africa.
Dr Sarah Bernays [00:06:52] The second study that I'm going to be talking about briefly is the Chiedza trial. This is a large, multi-component, community-based intervention trial, which is happening in Zimbabwe. Here we're incorporating HIV-prevention, testing, treatment and care, and sexual reproductive health services. Again, this intervention was the product of performative participatory research with young people from the communities, and I led the co-design research for that, the first year to design the intervention before we began the trial. And the primary outcome of that trial is improved viral suppression.
Dr Sarah Bernays [00:07:31] The third study of the four is called the Zvandiri trial. And the Zvandiri intervention is a psychosocial peer support intervention, which has been being developed in Zimbabwe since 2004. And we conducted a trial which wrapped up at the beginning of this year with adolescents living with HIV, where we compared the intervention and considered whether that was going to improve viral suppression compared to standard of care. This has been a really exciting process to be part of because the Zvandiri trial results showed that with the provision of the psychosocial support intervention, we were able to demonstrate an increase in viral suppression at a community level by 42 percent, which is a pretty radical idea if you think about how a social intervention can have that kind of clinical impact. So it's been a bit of a game-changer in terms of recognising the value of peer support in achieving HIV clinical outcomes.
Dr Sarah Bernays [00:08:31] And then the final study is a WHO Global HIV Guidelines Adolescent study that we did to inform the service delivery recommendations from the WHO. We did this recently, so we have had to do it all virtually and I'll go on to talk a little bit about the challenges of that later on. But the question we were asked to address by WHO was, should psychosocial support be considered to improve HIV care outcomes for adolescents living with HIV?
Dr Sarah Bernays [00:09:05] Now, all of these four studies have kind of all coalesced together, and I wanted to just take a moment before we move on to the impact of Covid to consider what the kind of key ingredients as we see it from our research are for engagement and improved clinical outcomes for adolescents in sexual reproductive health. The first one is to engender a network of support which engages with the social as well as the clinical to create an enabling environment around the adolescent. Too often, adolescent interventions appear to be individually focussed on the adolescent rather than the adolescent within their social and structural environment, which is essentially akin in my mind to sharpening an arrow and then shooting that arrow into an incredibly solid wall. It's great that the arrow is sharper, but unless you change the environment in which the adolescent is also changing and transforming, then the effect you can have is very limited. We've also been thinking a lot about how to develop acceptable welcoming and appealing services. And as I said before, in relation to the Zvandiri trial and others really trying to emphasise the valued role of psychosocial peer support, firstly in ameliorating the structural drivers of risk in terms of prevention, adopting a harm-reduction approach, and secondly, in terms of supporting engagement in prevention and care.
Dr Sarah Bernays [00:10:29] So to give you some examples of what our work looks like in terms of the co-designed intervention to take the Lending a Hand example, the intervention that we've designed, which we intended to roll out this year, was to establish in each community a small peer supporter network and the peer supporter would be there to provide advice and support over the telephone, to offer a physical drop-in centre or a hub, and that would be staffed by peer supporters during adolescent-friendly hours, which would be early evenings and weekends, as well as the daytime, to provide information and onward referral to local health and social services, to offer products such as free condoms, offer some form of service in the form of access to a counsellor and/or nurse, as well as the use of a computer and a printer to support employment opportunities, engagement and training and apprenticeships. But within this, also to be identifying champions within the local community to enable a more supportive local environment for young migrants, which is the particular population of interest for this intervention. So I just wanted to let you know, that's to give you an indication of some of our work, but also to emphasise the value that we've been placing on addressing the intersection between the social and the clinical, and also how the provision of psychosocial support may be critical to leverage improved health outcomes.
Dr Sarah Bernays [00:11:55] This also came out incredibly strongly within our recent WHO global consultation. So to address this question of whether psychosocial social support should be considered to improve engagement in HIV care, we conducted an online questionnaire with 388 adolescents living with HIV across 45 countries and conducted ten focus group discussions in ten countries with 61 adolescents living with HIV. And they unequivocally told us of the importance of psychosocial support in managing their HIV, adhering well to HIV treatment, and feeling hopeful for the future. And what I want to do now is to show you a very brief video of our findings, which we made to convey this argument to the expert panel at WHO to maximise the impact. So I'm just going to share that video now.
Video plays [00:13:01] As young people living with HIV, we rely on clinical intervention. Clinical interventions, ensure that we know our HIV status and can be started on ARVs. They help us to know how well we are doing on treatment and can tell us if our immune system is protected. But our engagement with these chemical interventions is reliant on what we understand about our health and treatment, how we think and feel about it, and the many social factors in our lives which influence our desire, motivation and capacity to engage and adhere to treatment. Psychosocial support improves our mental health and HIV literacy, which in turn incentivises and motivates us to adhere to that, which in turn leads to viral suppression. Being supported to work towards getting your viral load result in having high HIV literacy, improves our mental health and commitment to adherence, and the cycle continues. But we need psychosocial interventions to be sustained over time as we grow and develop into adulthood. When psychosocial support is ongoing, we continue to benefit. It creates a momentum in which they all reinforce each other, and this gives us a much better chance of enjoying consistently good mental health, secure adherence, and sustained viral suppression. If psychosocial support, intermittent or short-lived, the gains may be lost. It's not enough to keep the momentum going. There is a Ghanaian proverb which states: 'If we get to the bridge, we will cross it. But if we are left to cross it alone, we may give up or fall in the water.' This is our journey with HIV. Psychosocial support enables us to cross the bridge. We need psychosocial support alongside us on the good days and there to hold us up and get us through the more difficult days. Psychosocial support has a catalytic effect on clinical interventions. The success of clinical interventions is entwined with the effects which psychosocial support has on our wellbeing, mental health, and social connectedness. Without psychosocial support, the clinical effectiveness of ART will not be realised.
Dr Sarah Bernays [00:15:41] What I want to do now, having demonstrated that a lot of our research has been pointing to the importance of psychosocial support to support clinical outcomes, improvement in clinical outcomes, I now want to think about what's been happening this year in terms of Covid-19 and lives interrupted for adolescents, and what impact that's had on sexual reproductive health services in sub-Saharan Africa. I've talked about it as the early age of Covid because I think that this is the beginning of an adaptation process that's not going away any time soon.
Dr Sarah Bernays [00:16:19] So even for those that we're working with in resource-constrained settings, Covid-19 has exploded into their lives and they're taking a very big hit. Even for those who in daily life have less security, for whom risk and uncertainty permeate each day even before Covid-19, the pandemic has still upended assumptions about how risks can be managed, money can be found, and safety secured. For young people whose recent lives have been characterised, therefore, by fragile livelihoods and pervasive risk, as we see in many of the settings that we're working, they're seeing their today disturbed, their tomorrow reshaped, and their futures interrupted. And there are very few resources available to them which can act as an anchor. So, like everyone, they've been plunged into an acute exigence state defined only by its beginning, which has been the emergence of Covid-19 with the awareness of it, and which is perniciously distinguished by having no evident ending. So added to which the non-pharmacological interventions put in place to kerb the spread are perceived to pose a greater threat to young people than the infection. And although one might argue that this is the case in the global north, perhaps it is particularly so in the global south where young people, so those under 30 years old, make up one third of the population of South Africa and three quarters of the population in Uganda.
Dr Sarah Bernays [00:17:48] So what we have been doing is we used the Chiedza platform, which was the community-based trial across the cascade of HIV care in Zimbabwe for young people, we use that platform to conduct research into community perspectives on Covid-19 in late March and April. So there was a lockdown declared in Zimbabwe that was very dramatic and quick, which started in late March, and Chiedza had to close. So we conducted virtual research with people, clients affected, and staff to kind of gather community perspectives on Covid-19. And we submitted our findings for a rapid publication in the WHO Bulletin, which was published by the end of April. And what we highlighted here in this publication was the vital need to tailor public health interventions to what is feasible within communities which are characterised by dense living, limited running water, and subsistence livelihoods where people have no savings or food stockpiled. So this is kind of a metaphor for the broader approach to sexual reproductive health, which is that prevention needs to be adapted to local circumstances.
Dr Sarah Bernays [00:19:05] In terms of what this led to, in terms of sexual behaviour and sexual reproductive health need, I wanted to give you a few examples from young people that we've been working with. And the first one is from a young woman in Kampala, in Uganda, and she's a young woman and she puts on her face mask and slips out of the room where she stays to meet a man who will pay her extra money because she agrees to live sex, sex without a condom. And she feels confident that she's protected herself from Covid-19. She's no longer thinking about HIV infection and she desperately needs the money. So the heightened risks that come with the prevention of Covid-19 speaks to the collateral damage of restrictions on the informal economy and the mass closure of services. So it pushes people into the margins, further into the margins about what risk behaviour they need to take. And it usurps one risk for another: Covid-19 over, for example, HIV or other STI risks. We also see there's a general increase in sexual risk-taking behaviour, including increasing need to leverage sex to access resources. And it's really important to explain that in these settings for many of these young people, this wouldn't be characterised as transactional sex. They're not identifying themselves as being employed or engaged in sex work in any way. They're just pragmatically using the resources that are available to them to access material resources.
Dr Sarah Bernays [00:20:38] But simultaneously, what we are seeing with the mass closure of services is that there is less access to prevention services, for example, Chiedza, the intervention that was being run as part of this trial. And these are just three examples from people in Zimbabwe that, through this Chiedza work we did during lockdown.
Dr Sarah Bernays [00:20:59] The first one is from a 19-year-old man in Zimbabwe who says, "I've stopped using condoms and am engaging in unprotected sex." They just weren't able to access them. A twenty four-year-old woman in Zimbabwe talks about being unable to access free family-planning services to avoid having unintended pregnancies. And another twenty four-year-old woman talks about being unable to access free pads, and she's had to cut up pieces of fleece material and wash them afterwards.
Dr Sarah Bernays [00:21:30] And what I wanted to explain with these examples from our data is just how fraught it is to get by and how there's an elevated risk in relation to the economic and health service complications or the collateral damage of prevention, independent, really, of how many Covid-19 cases there are. And so in some ways, Covid-19 threatens the hard-won gains in youth HIV prevention and treatment. And youth sexual and reproductive health needs have increased during Covid-19, yet the ability of services to meet these needs is compromised.
Dr Sarah Bernays [00:22:05] So what we're observing is an increase in sexual behaviour at the same time as fractured access to care, prevention and clinical services. And under such conditions, young people relied on social media as a means to keep in touch, metaphorically, and to access information. And so this access to social media in these rural contexts in sub-Saharan Africa was shifting from being a luxury to a necessity in terms of being visible and accessing material and social resources. Yet access to devices and data are uneven, and when young people have very little, they are forced into a dilemma as to which is more needed for their daily survival, leading to the confronting question: "Should I buy food today or should I buy data?" So one of the questions that we've been grappling with, given the centrality that seems to have come to the fore around the need for psychosocial support for young people, is how do we adapt interventions which can provide psychosocial support in this context and in the context of Covid-19. So how, for example, can we adapt the Lending a Hand intervention. And so in the area of KwaZulu-Natal where we're conducting one site where the intervention is running, we already have peer support established. So what we've done is to shift our ideas around peer support from being focussed around a physical hub to a hub inside our research institution. So it won't be somewhere that young people will come to visit, but it will be a phone line which can provide information, support and fact-check rumours. And the peer supporters can get support from our team in terms of the research institution to make sure that information is up to date. But it has compromised our ability to deliver what we had designed with young people as to being what they needed.
Dr Sarah Bernays [00:24:01] And also, our experience over the last six months, has demonstrated the limits of virtual support for prevention and care in these settings. There's an enormous enthusiasm amongst donors in particular to shift all of the psychosocial support that we had been researching or being part of, to shift it online. But what we've found is really a huge question mark, both around whether this is practical and also whether it's desirable from the young people's perspective. In these settings, there is still a weak infrastructure around mobile phone technology, despite the proliferation of smartphone-use. And the costs of data for those who have very little are still relatively high. And we found that this was reflected in the WHO consultation that we did where we had to rely with local partners on doing virtual research, was that it was very difficult to engage the younger adolescents. We had reasonable engagement from those age 19 and above, but the younger adolescents really had very limited access to devices. And even though we were able to support them with data, it really inhibited their ability to engage and to be heard. Similarly, it would inhibit their ability to access support. And so there were concerns that the practical challenges in accessing virtual support may increase inequity about who is getting support. And the second thing that we have been advocating very strongly is that Covid-19 demonstrates that if we're going to have a general shift towards virtual support, there is an urgent need for investment in infrastructure to broaden young people's access to sexual reproductive health support and care, virtually. And even when things do change again, it's unlikely to snap back just to how things were before. So chances are we'll be looking at more of a blended approach to the physical delivery of psychosocial support for health care as well as virtual support. So, again, it still needs that infrastructure to support it. But the second question that has come up is whether this shift to virtual support for adolescents in these context is desired. And a lot of what they're telling us is they want direct contact and company and that we should not mistake their desire for privacy as being synonymous with necessarily having to access and navigate section reproductive health services with autonomy. And just to give you an example of that, in the Chiedza trial, led by donor enthusiasm, we were asked to trial HIV self-testing for adolescents and had incredibly low uptake. So out of 951 young people who engaged in testing and were given an option of testing supported by a service provider or self-testing, only 23 out of 951, which is just under 2.5 percent, opted for self-testing. And when we were looking into that, as to what the explanation was for that, it was that they didn't want to be on their own in a very scary time when they were finding out the HIV result. They wanted somebody with them who could advise them, who could help them, who could get them through that process. And they thought that self-testing would exacerbate mental health crises and challenges that might result from a positive test result. But then thinking about other forms of self-administered sexual health interventions, we've also been doing a SDI project within the Chiedza trial and trialling self-collected vaginal swabs, which have been pretty popular for young people. And again, when we're asking them why, they say it's very important that when they find out the results, they would be with a provider, but they would be happy to collect the samples on their own with adequate instruction. So we need to be very careful about this idea of the shift to virtual support, to autonomous support, to self-administered and self-navigating support for adolescents, and that there's a great deal of nuance to be understood about what they want in terms of their autonomy and how we can protect their privacy.
Dr Sarah Bernays [00:28:25] So the final point I really want to move on to is how we've tried to adapt the service delivery for Chiedza. So across the settings that we are working in, young people have described in all areas of their lives, including their health, that Covid-19 has put their lives on standstill. So as I mentioned, services were closed and some are opening back up now. But public transport remains unavailable in Zimbabwe with very limited access in Uganda and South Africa. In the Chiedza trial, we were able to reopen about six weeks after lockdown was imposed. And we were able to do that because we characterised ourselves as an essential service. Reopening was absolutely necessary in the context where there were no other services being available for young people. And there is a more complicated health system situation in Zimbabwe, where Covid-19 coincided with a very substantial health care workers strike due to a lack of payment for a number of years by the Zimbabwean government. So we were able to reopen the service across the communities. But the restrictions under which Chiedza have reopened also have changed the delivery of that service. So as I mentioned earlier in my talk, the intervention was co-designed over the period of a year with young people. And the intervention is kind of underpinned by three pillars. And these three pillars are that it should be community based (so the services are delivered in community halls and often involve referrals back into the health system). They're youth friendly, in that they include social activities, time with non-judgemental service providers, youth-friendly timing of service provision, but also it just makes it an appealing place to come, so many young people would have come to Chiedza for half a day and sort of incidentally, almost accidentally engage with services while they're there, but that may not have been their intention upon coming to the service. And the third pillar is the integration of services and the branding not being restricted to HIV or STIs, but also thinking about family planning, menstrual hygiene management, counselling and relationships advice. So that was the premise and the ethos of the Chiedza trial that we started last year. And I want to kind of move on to how it has changed in order for us to be able to be open under the Covid-19 restrictions in Zimbabwe.
Dr Sarah Bernays [00:30:58] So as you can see from some of these photographs, the infection prevention control measures and compliance with the government regulations have led to the service being moved outside, to mask wearing, to restricted opening hours, a discontinuation of social activities and the ending of socialising at the sites. And this has impacted service provision and acceptability in three key ways.
Dr Sarah Bernays [00:31:23] Firstly, the essentialisation of Chiedza has led to the kind of unintentional reframing and narrowing of the service to becoming only about HIV and STIs. It's about risky sex where the need is immediate, which is what was required by the government to demonstrate that it was an essential, urgent service. And that shifted it away from being about a broader adolescent health, which has included sexual reproductive health. So whilst we had initially deliberately branded and positioned as not being a sex service, it has become this as it's being changed with this redefinition as an essential service which is necessary to mitigate youth risk. And critically, this has taken away the broader reasons that people would have attended. But it's also taken away the narrative that young people were able to say if they were asked where they were going on the way to Chiedza within the community, they had a very socially acceptable reason to be able to attend. So they could offer an explanation if they were going for menstrual health, they were going for a youth activity. It didn't reveal, disclose that that they were necessarily sexually active and that has now been taken away. Secondly, we've had to make severe adaptations in terms of restricted time with health care providers, which is heightened the tension between the quantity of clients that can access the service with the quality of service provided to each client. And it's also changed the nature of the experience of time. So whilst before young people were fairly happy to hang out for a few hours, which gave the providers more time to spend time with individual clients, now that there isn't the social element of being there, it's changed it from 'hanging out' to 'waiting', and understandably, that's affected people's engagement with the service and led to a less appealing service. And thirdly, just broadly, the removal of social activities has had a gendered impact on engagement, in particular, by having to reduce the services which appeal to young men. So we're really struggling to hit the numbers of young men that were attending the service before we had to adapt it in line with the restrictions. So in some ways, this is very unfortunately acted like a natural experiment by highlighting some of the essential qualities of youth, HIV and SRH services in these settings. And it's provided for us important lessons, both for the design of future adolescent-friendly interventions and for how we might be able to adapt long term with Covid-19 risk, because it demonstrates the entertainment and social activities which are currently not prioritised, they're not an optional-extr should funding allow, rather they're key components of youth-friendly service to encourage engagement, uptake, acceptability, and to capture many people who may not have identified themselves as being a high risk.
Dr Sarah Bernays [00:34:26] So it's clear that the risk environment is increasing for adolescents in these settings, and there's also a real risk that we're potentially losing hard-won gains in adolescent sexual reproductive health. It's also increasingly the case that in many countries around the world, young people are suffering in particular with their mental health and indicative of this there's a seminar being run on Thursday in the UK by Professor Vikram Patel, and he's giving a paper on how he argues that young people globally are being thrown under the bus in terms of the hits they're having to take for Covid-19 prevention. And I just included this slide from Kermit in terms of in the UK, when the clocks are going back, the people are not keen to have an extra hour of 2020, given how it's going so far. So it's all pretty grim and there is so much that we need to draw attention to and work on. But I wanted to finish on a positive note, which is to highlight the enormous spirit and capacity of young people, even in adversity where we are working. And I wanted to show you a short film that was made with Africaid who run the Zvandiri intervention, who were the trial who had that enormous success in terms of how we can demonstrate that the psychosocial support differentiated service delivery they're providing can have this really quite radical impact on viral suppression. So with Zvandiri, we secured the rights to the song 'This is me' from The Greatest Showman on Earth, which I think you'll agree have very apt lyrics. And I hope that you find it inspiring as to all that can be done when young people have such a wealth of talent, creativity and capacity for positive action. So I'm just going to wrap up by showing you that video now. Thank you. [ VIDEO plays ]
Dr Sarah Bernays [00:41:38] So I hope that that's an inspiring and uplifting way to finish, and I just wanted to acknowledge all our funders and partners and obviously it's been me speaking today, but it's absolutely an enormous team effort across international collaborations and partnerships. And just to say really excitingly, that video was shown as part of the closing ceremony for the International AIDS Conference this year, which gets enormous visibility and reach and it demonstrates how people are paying attention to the needs of adolescents, which is really wonderful.
Prof Kate Steinbeck [00:42:19] And thank you, Sarah, for an absolutely fantastic talk. I think you've said everything I was going to say the uplifting video and how it just struck me how similar young people are around the world, their aspirations, their energy, their optimism. And it was fascinating to listen to you. I'm hoping that you can stay around for a little while while we have some questions. And I'm going to encourage - or they're coming in now - I'm going to encourage everyone to send some questions.
Prof Kate Steinbeck [00:42:57] But look, the first question that has come up is "It's wonderful how well you brought out the importance of giving young people socially acceptable and fun reasons to attend the HIV and Sexual Reproductive Health Service. You've explained the need for the snooker and hanging out so well. What did donors think when you tell them about this? It's clearly different to making everything online."
Dr Sarah Bernays [00:43:31] Yeah, well, I guess one of the challenges we've got at the moment is that I notice that in the comments somebody said it was such a shame the social activities have been taken away, and I absolutely agree. And I guess what it demonstrates is that right now we have no choice, because in order to be able to be open, these are the government restrictions we need to comply with. And so I think what we need to be doing is trying to think about how can we manage this degree of infection risk in the medium and long term, particularly to a population group that is not particularly at risk in Africa. And countries in Africa are an extraordinary example of what's going on with Covid-19. So the first thing is it does demonstrate we need to think about it longer term. But second, in relation to donors - at the moment, donors wouldn't have much control either. I mean, they're pushing us to virtual because I think there's an enthusiasm for that, and we're trying to caution against it. But in some settings, for example, in KwaZulu-Natal and Uganda, where we're trying to rollout this Lending a Hand intervention, virtual is almost our only option. So what we're having to try to do is to temper this immediate shift to virtual and thinking "What else can be done? How can we make up for, or moderate, some of the losses that will come from physical support?" So I think we're doing it somewhat reluctantly and we're trying to temper donors' enthusiasm that it's intrinsically a good idea, independent of Covid-19, because, of course, it's seen to be more cost-effective, whereas I'm not sure it's necessarily more effective or as effective, which will have implications for cost.
Prof Kate Steinbeck [00:45:10] Thank you. I think that probably chimes with many of our experiences that working with young people, assumptions are made that they'll just love technology. And I think that the the hybrid model is something that's upon us because of Covid. And I'm just wondering if you just expand on that about the experience of Covid in Africa.
Dr Sarah Bernays [00:45:36] Understandably, when the lockdowns came in, they were incredibly severe in terms of what that meant for the daily lived experience. So we were focussing a lot on the collateral damage of the prevention measures, particularly for young people and how destructive it was for just their capacity to get by. But it may have been that that's been a really critical measure in terms of limiting the explosion of cases subsequently. We're not sure. But certainly in Zimbabwe, it appeared to be taking off, the numbers were getting higher, which was justifying the closure of services, but it has not maintained that trajectory. There seems to be an element of control. Similarly, in Uganda. Obviously, South Africa had a much more difficult time. But I think it's the uncertainty that it's not unfolding in the way that it might in many other regions in the world. And so this argument that we need to balance what the consequences of prevention are against the risk of Covid-19 I think is a bit more complicated in Africa because we're not very certain as to whether the current almost modest impact that Covid-19 cases have had will be sustained. And if it will, then I think we need to take more seriously the impact of prevention, the negative impact prevention. But it's a difficult argument to make where there's so many unknowns and people are so puzzled as to why there aren't the numbers. And of course, one might argue that's to do with testing, but there is a reasonable amount of testing. And also it's just - hospitals are not being overrun. So we're not seeing the kind of severe cases of it to the same extent as one might imagine could have happened within the region. I hope that answers - that's what I was referring to.
Prof Kate Steinbeck [00:47:33] Thank you. That does. And I've got another question here. "How had the travel bans actually impacted on your ability to do field work? And is it important to be there yourself?"
Dr Sarah Bernays [00:47:50] Well, as I mentioned at the beginning of my talk, I've been working with many of these institutions for about 10 years, and I've had the privilege of working with the same teams and individuals almost continuously as well. So it's been a long term investment in capacity building around social science and adolescent health research. And as a result, all of our research is led by the institutions who are there. And so to some extent, my role is much more as a technical support and as a collaborator that wouldn't be doing the field work myself anyway. I would complicate things with the colour of my skin and the accent and language skills. And so I would normally travel there fairly often, but more from a contributing to the research direction, the training, the writing process we would all do together. And actually, although I can't travel, most of my work is done by Zoome or Skype anyway. So for me, what my day-to-day research looks like hasn't changed in 2020 very much than how it was in 2019 or how it was in 2011 - just that more people are working in the way that we have been. So I think it's really important I had established very solid institutional partnerships and relationships, so actually it's not massively impacted by me not being there at all. And it just means I have a 2020 version of jet lag rather than the normal physical jet lag where I'm on calls between one and four in the morning from Australia rather than physically there.
Prof Kate Steinbeck [00:49:35] Thank you. Now, there's another question coming up. "Thank you for your excellent presentation. I particularly loved your research translation in the way your interventions negotiate stigma and discrimination. How do you engage different demographics of young people, for example, heterosexual versus LGBT young people? Is the messaging different and are their needs different?"
Dr Sarah Bernays [00:50:06] That's a great question. Certainly we have every reason to think the needs are different and the messaging should be different. We're working in a very specific context where it is incredibly difficult to talk about that degree of diversity and to design interventions, which explicitly and specifically target groups outside of the kind of hetero-normative characterisation of sexuality. And in Uganda, for example, whilst it is no longer illegal, they have decriminalised homosexuality, it hovers on a very, very difficult area to be doing research and doing intervention without being kind of subject to the rough edge of the law. So the way that we tend to engage in it is through implicit approaches of being welcoming to everybody, working with service providers so that they are ready to engage in those conversations. But our messaging is quite muted on it in order to be able to get anything done, led by our local partners. And to give you an example of just how delicate it is, we are just starting a project in Zimbabwe funded by UNICEF around viral load literacy for adolescents living with HIV in terms of viral suppression and the U=U campaign: so 'undetectable equals and transmissible'. And what we wanted to do was find out and work with young people about their understanding of this message and how that message could be tailored and adapted for different population groups of youth in Zimbabwe and within the region. And we got through the ethics approvals, but it came to somebody's attention in the Ministry of Health and we've been stopped from being able to start. We're In many, many negotiations with the Ministry of Health that our messaging - we're not actually even necessarily promoting the U=U message - but we're suggesting that young people deserve to know more about the enabling effects of viral suppression, and we're currently not allowed to do any work on it. So we have a very precarious balance to walk about making sure that our messages are explicitly inclusive, but we're not able to be as direct as we would like to be in targeting particular groups. And we're also constrained in terms of being able to conduct research specifically with particular groups to demonstrate the need. So, from what we know, we know that needs a different, but our messaging is more blurred, which is unsatisfactory, but currently pragmatically necessary.
Prof Kate Steinbeck [00:52:59] And do you do you see that that will ultimately come out of the Ministry and be allowed to be used? Have you had similar experiences?
Dr Sarah Bernays [00:53:13] I think it will, but it will be in a more moderated form. And I think it's really important for it to be a global understanding that things like U=U campaigns are not only are complicated in terms of the fact they're often not getting to young people, but that at a political level they will be ostensibly banned as messages. I mean, it's not as severe as that, but if you're not able to even find out if people understand it, how you can tailor a campaign, you've got problems. So I think it will be the product of a of a longer dialogue than we expected. But I hope we will be able to make progress with it.
Prof Kate Steinbeck [00:53:56] There's another question here about the two videos, obviously being very enthusiastic about them. "Can you tell me who produced them and what and who were they aimed at primarily?
Dr Sarah Bernays [00:54:16] OK, great. I'm glad they've excited some enthusiasm. The first one was aimed at... So I was leading this global consultation of values and preferences of adolescents living with HIV in relation to HIV service delivery. And so I didn't have very long for my presentation, and it was part of a back-to-back virtual meeting, ao we decided that short video would elevate our message and capture people's attention. So it was specifically for the WHO expert panel who were voting as to what grade psychosocial support should be decided as being in terms of whether it should be a recommendation, a strong recommendation, a moderate recommendation in the global guidelines. So it was kind of a deliberate tactic to convey our message in a persuasuive way because we had intended that the presentation would be delivered by a young person, and we were told that that that they weren't very keen on the idea. And to be fair to them, I think all the challenges with the technology, we weren't going to be in Zimbabwe with the young person who was going to be delivering it. So we weren't able to do that. So the video was the next best way of bringing that energy into the room. The second video was funded by one of Zvandiri's donors, and it was in part to try to again capture this message that we got from the trial, but also just the joyfulness, the energy and the healthiness of adolescents living with HIV, if they are given and enabled through the correct support, both politically and socially. And so that was targeted at a general audience that would maybe find a way to kind of capture people's imaginations through a recognisable song and kind of reframing actually how absurd stigma is if you put it in that context.
Prof Kate Steinbeck [00:56:18] And somebody I think has answered your next question, which is "Do we have a link to the animated video?" And I think if you look on the left, Sharon has already found it for you, for everyone who's listening. So, look, there's another question come up. "How do you include messages about gender-based violence in your intervention?"
Dr Sarah Bernays [00:56:46] So in Lending a Hand and in the Chiedza intervention, really all of the interventions, it's a pertinent concern. And I think that one of the key things that we are able to engage with because of the nature and the design of many of the interventions that we're working within and with, are that they are reasonably long term interventions. So it's about establishing trust and rapport and also having, within a reasonably constrained situation, as many referral services on board as possible. So it may not be that gender-based violence is the kind of top headline message of the service. But once people engage within the interventions and they trust the providers, then that is very likely to be a conversation that can happen and people feel willing to talk about. It's very, very common for some young people, particularly sexual violence. And within that system, there are referral systems and structural support. It is not that straightforward because removing people from their context often is not necessarily an option, so it is a long term kind of plan. I don't know if that adequately addresses your question. But it's also around counselling and support. And then other interventions I've been working on have been I've been thinking about engaging specifically with gender-based violence and trying to engage with community and social norms around kind of gender performance and what constitutes being a strong man, for example, or within a man within the relationship. It's an ongoing challenge.
Prof Kate Steinbeck [00:58:40] Thank you. And I think, sadly, we're going to have to draw this to a close because I guess everyone's got somewhere else to go. But, Sarah, thank you for a really fantastic presentation. And I think I can say that it will be up on our website soon. And for anyone who might have missed it, to refer other people to, because I think it's given us a tremendous amount of food for thought and in many ways, the things you've talked about, even though it's Africa, there are so many similarities to working with young people around the world. So thank you again.
Dr Sarah Bernays [00:59:22] Thank you, bye everyone.
Prof Kate Steinbeck [00:59:24] Thanks to everyone for listening today.