Children should have a say in research that affects their lives. This helps researchers understand what matters most to them. However, there is little guidance on how to involve children with serious illnesses in research, especially in palliative care and in places with limited resources.

To help address this, a study in Uganda worked with 20 young people living with serious physical illnesses. The young people took part in interactive workshops where they worked with researchers, parents and caregivers to find the best ways to involve children in health research.

Together, they developed nine key principles for including young people in palliative care research. The study found that children should be involved from the beginning, so that research focuses on the things that matter to them. Meetings should also be creative and flexible, making them enjoyable and encouraging children to take part.

The young people also helped design research materials to make sure the information was easy for other children to understand. Giving children a real say in decisions helped the group communicate better, work more efficiently and organise activities more effectively.

A group of young advisers continues to use and improve these principles as the wider study carries on until 2027.

This project shows why it is important to work with young people at every stage of research. By using these principles and workshop ideas, researchers, healthcare workers and policymakers can make sure that studies listen to children, include their views and respond to their needs.

Namisango E, Fraser LK, Nkhoma K, Downing J, Evans C, Nabirye E, Namukwaya E, Luyirika E, Katabira ET, Nakaweesi J, Karamagi Y, Kayaga J, Nakirulu A, Hossana D, Muwanga M, Harding R. Co-designing engagement principles for involving children and young people in palliative care research in low- and middle-income settings. Res Involv Engagem. 2026 Oct 13;12(1):168. doi: 10.1186/s40900-026-00992-4. PMID: 42864675; PMCID: PMC13660183.