Zvandiri: Nicola Willis on How to Design and Deliver with the Government

Carolyn Robinson: Please tell me about your venture and when it was founded?

Nicola Willis: I’m Nicola Willis, the founder and executive director of Zvandiri, a local Zimbabwean not-for-profit organization based in Harare, Zimbabwe. We train young people living with HIV as peer counselors, and we connect them with other children and adolescents also living with HIV to support them to survive and thrive. They counsel them through the whole range of complex psychosocial issues that young people face growing up with HIV to improve their mental health and well-being, but also to improve their adherence to treatment, how they cope with their HIV status, and their broader health outcomes. 

I’m a pediatric HIV nurse specialist by training. 21 years ago, I was volunteering in Harare, helping set up the pediatric HIV program because ARVs antiretrovirals were starting to become available. At that time, the country and the region had devastating deaths among children and adults from AIDS. It was a real period of hope, but there was very little done for nurses. I came to Zimbabwe to help train nurses in the role they could play to support kids with HIV in treatment. I was setting up the pediatric treatment program in a local clinic. It was just joyous because we were able to get the first group of children onto ARVs. Those adolescents told me that the treatment was great, but they needed more than medicines. 

“More than medicines” has become a bit of a strapline for us. That’s also been my whole career path. Yes, we need these biomedical clinical approaches for different health conditions, but how can we help children and young people in particular? That’s my focus, to look at the broader mental health and well-being, and how to help people live with these chronic conditions. 

My young patients said they needed a place to come together and support each other to learn how to live with HIV to live happy, healthy lives. We started a support group in my garden for a handful of young people, six young teenagers living with HIV. They came up with the name Zvandiri, which has a very strong meaning in Zimbabwe. In the Shona language, it means “as I am,” but it’s much more than that. They were saying, “I may be HIV positive, but accept me as I am.” 

We started a support group, and then that quickly became too small. We needed another group and another group. Right from the outset in 2004, I wanted to implement this program with the government, not as a parallel NGO. How could this complement the work that the government was doing? In 2004, we started setting up support groups with the government, which are common now, but they were a unique thing then for kids with HIV. We set those up attached to health facilities in the communities. Kids would go for their treatment, but then they would also be referred to a support group. It’s a kind of complement to their treatment.

Then we decided that was not enough. We needed to follow them up at home. A group of us volunteers started visiting them at home, working with their families, counseling the kids, and that became a key part of our program. In 2009, I was working with the Ministry of Health, training counselors to support children with HIV. I wanted to try training young people because we were working with a phenomenal group of young people who had the lived experience of HIV. They knew how to reach other kids with empathy, they just needed a bit of structured training around counseling skills and how to work with their peers. We called them Community Adolescent Treatment Supporters with the Ministry of Health, and we trained 10 young people. It was very much like everything we’ve ever done, dipping our toe in the water, trying it out, learning from young people what they need. 

It was immediately clear that this could work effectively. We started scaling it up with the government. For years, we hadn’t really had any funding, just friends, family, and some embassy grants. UNICEF understood what we were trying to do, but the idea of training 18 to 24-year-olds living with HIV as a critical part of the solution in this very biomedical world was a hard sell.

We continued to scale it up with more philanthropic funding, and people were noticing that the youth peers were doing amazing work. You could see anecdotally and in our program data that kids were doing better with their ARVs. They were adhering better to their treatments and their mental health was better, but we didn’t have empirical evidence. It’s amazing now with all the attention to mental health, but it was a real struggle. We finally got a grant for a randomized control trial where we could compare kids in Zvandiri with those who were not. We found a strongly significant impact on viral suppression and mortality.

Then we conducted a second trial looking at their mental health. We found young people in Zvandiri were 42% more likely to take the medication, be virally suppressed and survive, along with a 60% reduction in symptoms of depression and anxiety. That helped confirm what we’d always believed. It was very validating for the young people who had been working so hard over the years to have this strong data to confirm what they were doing and the impact of it. 

Carolyn Robinson: What is your approach with peer counselors? Is it distinctive within the field of HIV support? What might others find surprising about it?

Nicola Willis: It’s been a journey of justification to show that young peers living with HIV could have an impact. We’ve focused on generating that evidence. Then WHO endorsed and recommended it. Other models have been developed over the years, but it’s fair to say we were one of the early pioneers for the role of peers. We’ve driven a lot of evidence, as well as sharing best practices, and how to do this work. A distinguishing feature is that right from the beginning, we never wanted this to be a parallel NGO project. We wanted to be embedded in the government. Right from the outset, we committed to planning, designing, delivering, and evaluating this with the government.

What that has meant is we’ve spent a lot of time developing systems to make sure that these phenomenal young people can do what they do well, and they do it amazingly. They’re not just trained and sent into a void, and then we expect miracles from them. There’s a solid system within which they’re integrated, embedded, and supported. It was always a hard sell to say that young people are a valuable part of the HIV solution, but people get that now. 

For 15 years, Zimbabwe has adopted this model, scaled it, and now they finance it. For five years, they’ve been using tax. When it comes down to priorities, it’s fantastic that for five years Zimbabwe has been using its own domestic financing to pay for this cadre, which is a huge symbol of the value they place in them, especially because children and adolescents with HIV continue to fall behind adults.

Only half of the kids with HIV worldwide are on treatment, despite it being available. Despite knowing we’ve got great treatment now for children, only half of them are on these lifesaving medicines. Less than half, that’s 48%, of kids on treatment have a suppressed viral load. They will develop AIDS and die if something isn’t done. What we’ve shown is that when you add in peers, that can really be transformative, helping their mental health and psychosocial well-being to drive improved adherence and health outcomes. In a bigger advocacy point, we need to advocate for ARVs, for kids to get on medicines, for nurses, for clinical services. Within that comprehensive package, we also need to make sure that this very valuable peer cadre is included because we know it can make a catalytic difference.

We’ve focused on supporting governments to develop these systems. Over the last seven years, as I said, WHO [World Health Organization] endorsed our model. PEPFAR [President’s Emergency Plan for AIDS Relief] termed it a game-changer for kids. UNICEF has been supporting this for a very long time. It’s been widely recommended and documented. When countries across the region were struggling with how to address this gap for children, they looked for models. Because Zvandiri was well documented, recommended, and known, countries started asking for our help.

Carolyn Robinson: What communities do you serve? It sounds like you’re scaling to other countries in Africa or elsewhere. Can you talk more about that?

Nicola Willis: It’s been scaled in Zimbabwe for 10 or 15 years, but when other countries started to ask us, we did some real soul searching. How should we share in a way that provides quality support that we could also, frankly, afford? We didn’t have the desire or intention to set up offices and plant ourselves in different countries. We wanted to emulate how we’ve worked in Zimbabwe, which is with the government. With other countries, we set this up with their Ministry of Health and a local partner, and then provided technical assistance to that government and partner. We defined a technical assistance model for supporting governments and partners, based on how we’ve worked in Zimbabwe with our government. 

Zvandiri is now being adopted or localized in 15 countries. We didn’t necessarily intend to go wide and thin on the ground, but it was a question of timing and need. It was three or four countries at a time, phased with WHO, not all in one go, but all in Africa. We’ve had conversations with people in other parts of the world. The next iteration of this is a framework we’ve developed called Thrive95. The 95 refers to the viral suppression we’re aiming at for kids, i.e. 95% viral suppression. “Thrive” hopefully speaks for itself. We don’t just want viral suppression, we want young people to thrive. It’s a two-pronged goal. It’s a system-strengthening framework with eight pillars, and it’s drawing from everything we’ve learned with our research in the first pillar, government leadership. Second is financing, integration, service delivery, M&E, all of that. That’s essentially the framework we use to help governments develop the system. 

We’ve tried hard not to have this group of peers in a bubble that’s heavily reliant on an NGO like Zvandiri. We’re a technical partner to the government, rather than delivering this ourselves. Last November, 13 countries came to Zimbabwe, with approval from the cabinet, from the top of our government. We had teams of three from each country, a government representative, an implementing partner, and a young person, who all came to Harare. We had an amazing gathering for three days, where we all reflected on their experience of adopting Zvandiri in their countries, and what we’ve collectively learned. Each country developed a plan for continued scale up. We ended 2024 on a high, with plans for 2025, and then in January came all those announcements from Washington. What’s been encouraging is that, now more than ever, those countries are realizing the importance of our framework because it’s government-led. It’s focused on domestic financing. We developed it for a post-aid world, if you like. That was always the goal.

Carolyn Robinson: Could you share an example of something that illustrates the impact of your work, and how you know it’s working in a community?

Nicola Willis: Often, a young person has grown up with HIV in their community, but has never met anyone else living with HIV. It’s been a childhood of orphanhood, feeling isolated, worried about their own future, their own mortality, struggling with mental health issues. When the local clinic where Zvandiri is being integrated is recruiting for peer counselors, the CATS, Community Adolescent Treatment Supporters, one of these youths gets invited to the training. They’re interviewed, recruited, and come to the training, but they’re not really sure what’s ahead. 

That first day is just magical, and  in a way, it’s our biggest impact because you have this young person who didn’t know anyone and felt they weren’t valued, who suddenly joins a group of other young people just like them, also living with HIV, and now they’re being trained as a cadre to work in the clinic. They’ve spent years as a patient, and now they’re recognized as someone with something valuable to offer and contribute to the clinic, to the community, to other kids.

The transformation is phenomenal. Of course, they need lots of skills and learning to build the confidence to work in the clinic and the community, but that is all mentored and it comes. Then they’re allocated a caseload, depending on whether they’re in a rural or urban area. In an urban setting, they might have a caseload of 50 children and adolescents young people living with HIV, from three years of age up to 22. 

They plan for their care on a monthly basis, which is a distinguishing feature of our model. We’re very intentional about case management. They plan what each individual needs. It might be that one client is struggling with their medication. They interact with their clients in four places, in the clinic, in homes, in the support group, and by phone. Maybe that one child is struggling with their adherence, and so they will visit them at home to counsel them, to help them address the challenges they’re facing. Another child might need to be told that they’ve got HIV, because they don’t know it yet. They’ll counsel the caregiver to help them talk to the child, and a lot of that is sharing how they felt when they didn’t know their diagnosis. 

It might be that a young person is sick, and they go visit them to make sure they get to the clinic for health services and further management. Another might be coughing, so they screen them for TB and refer them. Every young person is cared for individually by this brilliant young person who’s making sure those young people don’t slip between the cracks, providing them with connection, love, and support. 

We’ve done research that looked at the mechanism of impact, what’s actually happening psychologically. We came up with six constructs. What’s happening is they’re improving connections, which we all know is key for all of us, and giving hope, self-acceptance, self-efficacy, agency, flourishing, and purpose. Suddenly they have a purpose in life, and they’re valued in connecting with others. Those peer counselors get tremendous psychological benefits from being recognized, having a purpose, and feeling valuable. We have to be careful they don’t get overwhelmed. That’s a big piece of our work as well, looking out for them because they’re working with kids who have the same issues they have. That’s why they’re so brilliant. It means they’re also at risk of being triggered, so we have to deal with their issues as well. They also see an impact in the household with their families, who rightly or wrongly did not understand the needs of their child growing up with HIV. They may not necessarily have had good relationships. Then family members see that the clinic values them, and it’s phenomenal.

At the individual level, we see improved adherence to the ARVs, improved viral suppression, and less deaths, but also better mental health, more likely linked to other health services like TB and sexual health. We have a large group of adolescent girls and young women who are mothers. 99% of their babies are HIV-negative, which is amazing, compared to much higher levels in the adult population between 8% and 12%. 

These young people have done a huge amount of work over the years to influence policy, resource allocation, and service delivery worldwide. They speak at global events. Some of our young people have talked to presidents, heads of WHO, and heads of global funds. It’s more common now, but they started a long time back, bravely speaking out with such courage about their experiences. They’ve done that in formal, high-level political platforms, but they also do a lot of fun creative work using song and dance, digital stories, and body mapping. 

Carolyn Robinson: Everyone learns as much from what doesn’t work as things that do. Could you describe things that didn’t work, and what you learned from it?

Nicola Willis: It’s a load. What doesn’t work is when we don’t involve the government. I would’ve said that in December last year, but I’ll definitely say it now. If we just forge ahead with our siloed programs, young people aren’t necessarily integrated well into the system, but also it just isn’t sustainable. We’re finding that now where programs are collapsing. Where the government hasn’t been involved, it has been difficult to fully integrate young people and sustain it. That’s one thing.

What doesn’t work is when we don’t involve the government.

– Nicola Willis

Also, we all focus on numbers and reach. That’s attractive, but we’ve had to advocate strongly over the years to be careful not to ask too much of this incredible cadre of young people. There’s a potential to give them very huge caseloads, for example, so that we can reach hundreds of thousands of young people, but that isn’t feasible. Then we’re disappointed when we look at the results. How have they not impacted the lives of young people? Well, because we ask too much of them. From a practical perspective, and from a budget perspective, we’ve had to advocate hard for restraint. We know they can achieve a lot, but let’s be very fair, reasonable, use the evidence, listen to young people, and look at what they need.

Another point. We love to quantify impact. Some impacts we’re having on young people are very hard to quantify. This probably speaks to a bigger issue. We all want to look at mental health at the moment, which is great. We can count the numbers of young people at risk with symptoms of depression, but it’s much harder to tell you just how joyous all these young people are, and how much more hope, confidence, and purpose they have now. We’re doing quite a lot of research now on how to measure that, but it’s much easier qualitatively. When you’re trying to demonstrate the impact of these sorts of interventions, it can be quite difficult.

We love to quantify impact.

– Nicola Willis

Carolyn Robinson: Let’s talk about the different kinds of support you’ve had from Rippleworks. What did you receive, and how did that all pan out?

Nicola Willis: We started with the Leaders Studio sessions, which were fantastic because, obviously, money and grants are wonderful for an organization. As I said, we started as a group of volunteers. I’m a nurse. We never trained in how to establish, grow, and build large organizations. The opportunity for our senior leaders or middle management to learn from the Leaders Studio courses on a whole range of topics has been amazing.

I gained really valuable insights and exposure from different sectors. It wasn’t just from the HIV sector or the health sector. It was refreshing to get experts from different sectors and learn how to apply their guidance. The other great thing about the Leaders Studio courses is that I got connected with other executive directors. Some of those, I still connect with today. They’re mentors. I reach out to them when I’m struggling with something, to ask for their ideas. It was great to get knowledge, expertise, and skills, but also the connections and the networks. It’s definitely helped me, but also my colleagues at all levels. That’s worth more than any grant in many ways, in terms of organizational capacity building. In particular, we’ve been growing quite quickly. Those grants don’t fund organizational capacity building, so it fills that gap wonderfully. 

Secondly, project support. We’d spent many years positioning what we do in an HIV world, and getting better at that. We also wanted to diversify our funding portfolio and our partnerships. That felt like a whole other language, in a way. It wasn’t PEPFAR speak, for example. It felt like we were missing how to tell our story. Rippleworks offered us a project, and asked what we wanted to focus on, which was how to brand Zvandiri. We were partnered with a brand expert who was phenomenal. That project had such a huge influence and we learned so much. It helped us improve how we brand and tell our story. That led to a second project, which focused on organizational restructure. Again, you’d never get this in a project-related grant. Another expert helped us look at our strategy, the team we needed, and how that structure should look. Rippleworks delivers this program so well. It’s so well structured. I don’t know how they find these experts, but they’re amazing. The expert for that project took me on pro bono, and coaches me on a monthly basis. She’s amazing.

Again, the ripple effect. We’re just starting another one today that’s focusing on how we onboard all these peer counselors and develop a system that the government can take. The three Rippleworks projects have been amazing. Last year, they awarded us a talent grant, which has enabled us to hire and engage people with skills that, again, we wouldn’t have been able to do. You can’t put a cost to any of these grants. For organizational capacity building, we needed to diversify our funding. We needed people to help us with proposal writing who know how to do this. We’ve been able to hire business development and fundraising expertise, and also communications expertise, although we need to improve that. At the same time, we’ve been able to develop a wellness program for our staff, which has been transformational and wonderful.

Carolyn Robinson: Have you taken advantage of Expert office hours yet?

Nicola Willis: Appallingly, no, and I keep meaning to. I must mention that when the US government changed their financial position on aid funding, I didn’t even approach Rippleworks. An email appeared in my inbox giving us an emergency bridging grant. They recognized, without me even saying, that we would have an emergency, a gap. To help us prevent a disruption in services for kids with HIV, they gave us an unrestricted grant to use as we wish.

Carolyn Robinson: Were there any shortcomings in this approach? 

Nicola Willis: It’s going to sound bad, but I can’t think of anything. There’s another partner that does similar work, but I haven’t got anything else to compare with the Rippleworks support. This has been a phenomenal trust-based support for us, focused on believing in what we do, recognizing there are things we may need to help our organization, but also for us as individuals. I honestly can’t say how it could improve. 

They’ve just now appointed a venture leader for us, Matt Alexander, and that will be very interesting. He will be able to pull all our work together as a Rippleworks partner. We’ve benefited from different pillars of Rippleworks, so now it will be interesting to learn to bring it all together to support our continued growth. Helping us connect with other funders and partners would also be useful, although they may be doing that behind the scenes, I don’t know.

Carolyn Robinson: What role does trust play in your relationship with funders? Not just Rippleworks, but others you have. 

Nicola Willis: It’s night and day. I understand that funders clearly need accountability, but, with some, the reporting requirements on a monthly basis are a challenge, and we’ve had other funders in the middle with quarterly or six-monthly reports. I hope people don’t abuse the trust-based approach. I sit comfortably with it because I’m biased, but we want to be an organization with a huge amount of integrity and authenticity. It works for us because I feel they trust us. We honor that and it works. 

The fact that they took time to understand us is wonderful. Every engagement with them looks at our needs first, not to overwhelm us. It’s all about what we need, and it’s just so refreshing and deeply wonderful. They’re just deeply respectful. It’s so far from Big Brother. They are there to enable and support us to achieve what we’re trying to do, rather than having us spend a considerable amount of time trying to prove that their decision to invest in us was correct.

The fact that they took time to understand us is wonderful.

– Nicola Willis

Carolyn Robinson: Are there any bold shifts that funders should take to strengthen the voices of those closest to the problems you’re working on? 

Nicola Willis: Maybe it’s about how we understand impact. I know we have to quantify things, but let’s be honest, some of this quantification you could take with a pinch of salt. I know it’s incredibly challenging for funders to prove the impact of their investment, and I wouldn’t want to be the one trying to work that out. On our end, we spent many years trying to prove that our work was impactful. We now have a wide range of funders, and we’re beyond grateful. It’s been a journey, particularly now with the shift in the funding world. What’s that going to look like going forward? We could spend a huge amount of money proving impact with very complicated M&E systems and lots of staff for that, but at what cost? That money can be put into services. 

Carolyn Robinson: How has the collapse of USAID impacted you?

Nicola Willis: When you see all your colleagues’ organizations closing because their grants were terminated, it’s been tricky because we, fortunately, were not terminated. But it changes on a daily basis. We don’t know what’s coming one day to the next. Today I had a call about contracts we ended next week, and now I was just told to carry on. It’s very much in flux. We’re cushioned a bit, because this was our strategy from the beginning, to have the government take up this work. That’s where we were heading. We’ve been working on this. The shift is just that we’re accelerating it more. 

We had a government-led meeting last week on Thrive95 to review Zvandiri’s progress in scaling peer counselors, and our priorities moving forward. We’re working with the ministry to write an investment case which will document the return on investment when you invest in peers. We did a cost-effectiveness study, and it found that it costs more to invest in Zvandiri now, but modeled over 40 years, the results are highly cost-saving. I don’t know how many governments are going to be able to fill this gap. The funding gap that’s been left by USAID isn’t necessarily the same money we need to find.

Carolyn Robinson: What three things do you need to sustain your good work?

Nicola Willis: We need, frankly, money to fairly pay these young peer counselors, not just in Zimbabwe, but also the region. We’re looking at establishing a fund specifically for their allowances as young community health workers. We need money to keep this phenomenal evidence-based group of young people, because we know this works, they change the lives of their peers, and it also gives them a job. In a region with such high unemployment among young people, we’ve created a youth workforce. We need money for them. That can go to the government or whomever, but we need to sustain this group of young people.

As Zvandiri, we want to carry on supporting these governments, and because they want this model, the desire is there. They’re having meetings across the region to keep this going. We want to be able to continue giving them resources and tools, a bit like Rippleworks does for us, but in our world, supporting governments. We’re developing a community of practice and shared learning across the region. As Zvandiri, we want to be able to keep that going. We help governments develop the system, and then that other money pays for these young people.

Third, we need to efficiently and cost-effectively show that our work is important, and demonstrate the impact of support from partners like Rippleworks. We need to think technically in clever ways about how to measure and document the impact of our work at scale with government-led peer models in this new financial world. 

Carolyn Robinson: That’s perfect. Thank you. 

Carolyn Robinson led Solutions Journalism Network’s broadcast initiatives for many years. She is an experienced television producer/reporter for global news media such as CNN, BBC and Al Jazeera. As an international media development consultant, she has trained local journalists and directed media programs in two dozen countries around the world.

**This conversation has been edited and condensed.

View More Interviews