Co-designing engagement principles for involving children and young people in palliative care research in low- and middle-income settings

Engaging children in research processes is recognised as best practice, as it ensures studies are relevant and responsive to their needs. Limited evidence exists on effective approaches for engaging children with serious illnesses, particularly in palliative care and in resource-limited settings. This study aimed to work with children and young people with serious physical illness to co-design processes and practices for meaningful engagement and involvement in palliative care research within resource-limited settings. This qualitative, participatory study used three co-design workshops to develop engagement principles and practical processes for meaningfully involving children and young people in research. Twenty participants living with serious illnesses were purposively recruited from three heterogeneous tertiary care services in Uganda. Guided by the National Institute for Health and Care Research (NIHR) principles for public involvement, workshops were facilitated by members of a multidisciplinary team, parents and caregivers. Workshop discussions, activity outputs and facilitator notes were analysed using framework analysis, with the NIHR principles as the initial framework, and the emerging principles were refined and agreed through consensus with participants. The resulting engagement principles are being implemented and evaluated within the parent research programme through an ongoing Child Advisory Group, enabling refinement of the engagement approach through iterative feedback from children, young people and researchers. The workshops therefore represent the initial phase of a broader programme, with Child Advisory Group activities planned through 2027. Nine principles for engaging and involving children and young people in palliative care research were co-designed. Examples include: Involve children early to ensure that objectives, questions and outputs are relevant to their needs and concerns; Creative and flexible co-design of workshop and meeting agendas makes sessions enjoyable, thus increasing attendance; Involvement of children in the design of research study materials ensures that they are child-centred and easily understood; Sharing decision-making power with children strengthens efficiency, coordination, communication, and group management. Early implementation through the Child Advisory Group indicated that the principles were feasible and acceptable to children, young people and researchers. Co-designed engagement principles can support meaningful involvement of children and young people throughout paediatric palliative care research. These findings provide practical guidance for establishing child-centred engagement approaches in resource-limited settings and may inform future research, policy and practice. Ongoing application of the principles by the Child Advisory Group through 2027 will allow their continued evaluation and refinement. It is widely recognised as a best practice to involve children in research to ensure that studies directly address their actual needs. However, there is very little guidance on how to effectively engage children facing serious illnesses, particularly within palliative care and in settings with limited resources. To bridge this gap, a study in Uganda worked directly with 20 young people living with serious physical illnesses. Through a series of interactive “co-design” workshops, a multidisciplinary research team, alongside parents and caregivers, collaborated with these young patients to figure out the best ways to include them in health research. We established nine key principles for involving young people in palliative care studies. Important takeaways include the need to bring children into the process early so the research goals are relevant to their personal concerns, and the use of creative, flexible meeting agendas to make the experience enjoyable and boost attendance. Furthermore, having children help design study materials ensures that the information is actually easy for other young people to understand. The study also found that sharing decision-making power with children greatly improves communication, efficiency, and group coordination. A Child Advisory Group of young people continues to use and refine these principles as the wider study continues through 2027. Ultimately, this project highlights the profound benefits of working collaboratively with young patients across the entire research life cycle. By applying these newly co-designed strategies and practical workshop models, future researchers, healthcare practitioners, and policymakers can ensure that studies are truly child-centred, inclusive, and responsive to the real needs of children.