By Olga Cambaco, Postdoctoral Researcher Fellow, Eduardo Mondlane University (Mozambique)
“Research begins long before the first interview. It begins by listening.”
I watched a mother carefully adjust her child’s blanket before leaving the hospital. Like thousands of caregivers across sub-Saharan Africa, she was taking her child home with hope – but also uncertainty. Would she recognise the warning signs if her child became ill again? Would she know when and where to seek help? These are the questions driving my work.
I am Olga Cambaco, a Postdoctoral Researcher in Pediatric HIV at Eduardo Mondlane University (UEM). I lead and coordinate the social science research component of the SUPPORT1-PDM project. My research focuses on post-discharge mortality and health-seeking behavior among children living with HIV in Sub-Saharan Africa (SSA), addressing one of the most urgent yet underexplored challenges in pediatric HIV care: why children remain at high risk of severe illness and death after leaving hospital? I explore how caregivers recognize danger signs, navigate barriers to healthcare, and make critical decisions when a child’s condition deteriorates. By exploring the social and health system factors that shape these experiences, my work aims to generate evidence that can improve post-discharge care, strengthen health systems, and ultimately reduce preventable child mortality in resource-limited settings.
We often celebrate the moment a child is discharged from hospital. But for many families, that is where the hardest part of the journey begins. Understanding these questions begins long before the first interview. It requires building relationships, refining our approach, and ensuring that the voices we seek to understand are heard in ways that are respectful and meaningful.
As I write this, I have just returned from an incredible journey across Mozambique, Uganda, and Zambia. Over the past months, I have had the privilege of working with our social science teams to prepare our study, refine our research tools, and ensure that we are truly ready to listen to the communities whose voices are too often missing from research.
Long before collecting a single piece of data, we focused on something just as important: preparing ourselves to listen. Together with local research teams, we reviewed our interview guides, explored cultural nuances, strengthened our ethical and cultural acceptable approaches, and continually asked ourselves one simple but fundamental question:
Are we asking the right questions, in the right way, to the right people?
In social science, rigorous methods alone are not enough. High-quality research depends on our ability to understand people’s realities. A question that makes perfect sense in one country may be misunderstood in another. A concept that seems straightforward to researchers may carry a completely different meaning for caregivers. Words, concepts, and even the way a question is asked can shape the stories people choose to share. That is why piloting our interviews is not simply a methodological step – it is an essential part of building trust and ensuring that our research reflects the realities of the communities we hope to serve.
Across the three countries, we worked with local researchers to refine interview guides, adapt language and terminology, anticipate sensitive topics, and create an environment where feel respected, heard, and comfortable sharing their experiences. Because communities are not simply participants in research, they are its most important experts.
Listening before asking- Bringing communities to the centre
One of the most rewarding parts of this journey has been working with our partners to establish and strengthen Community Advisory Boards (CABs) across the participating countries. These groups are far more than a project requirement, they are an essential bridge between researchers and the communities we hope to serve.
Throughout the SUPPORT project, CABs will ensure that communities are not simply consulted but actively involved; from informing how the study is conducted to helping interpret and share its findings. Better science does not happen in isolation; it happens when researchers and communities learn from one another.
For too long, the voices of patients, caregivers, and communities have been underrepresented in clinical research.Yet these are the people who understand better than anyone the challenges of recognising danger signs after hospital discharge, navigating health systems, finding transport to health facilities, balancing family responsibilities, and making impossible decisions when a child becomes critically ill. Their knowledge is indispensable.
Our responsibility as researchers is not only to generate evidence but also to create spaces where these voices can influence science and, ultimately, health policy.
Our responsibility as researchers is not only to generate evidence but also to create spaces where these voices can influence science and, ultimately, health policy.
One project, three countries, one shared ambition
Travelling across Mozambique, Uganda, Zambia, and Zimbabwe, I was reminded that while every setting has its own context, cultures, and health system realities, many challenges are shared.
- Families everywhere want the same thing: their children to survive and thrive.
- Healthcare workers everywhere strive to provide the best possible care despite limited resources.
- Researchers everywhere hope that the evidence we generate will translate into meaningful improvements for the communities we serve.
The strength of the SUPPORT Project lies precisely in this collaboration. By bringing together multidisciplinary teams across four African countries, we are generating evidence that reflects diverse experiences while learning from one another. It reminds me every day that impactful research is not only about data. It is about people. Every caregiver’s story matters. Every child’s life matters. Every voice deserves to be heard.
