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

Background

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.

Methods

A co-design workshop approach was used to develop best practices for engaging and involving children in research. Twenty participants living with serious illnesses were purposively recruited from three heterogeneous tertiary care services in Uganda. Guided by the NIHR framework of public engagement and involvement, workshops were facilitated by members of a multi-disciplinary team, parents, and caregivers. The resulting practices were piloted in our research with the advisory involvement of the young people.

Results

The process established nine co-designed principles for engaging and involving children in palliative care research. 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; and sharing decision-making power with children strengthens efficiency, coordination, communication, and group management.

Conclusions

This study presents approaches to engaging children in research and highlights some of the benefits of doing so. Working collaboratively, strategies were co-designed for engaging and involving children with serious illnesses across the research life cycle. The process produces child-centred research practices, outputs, and dissemination strategies, and provides practical models for workshop agendas and guidance on managing child advisory groups. These findings can inform future research, practice, and policy to ensure children are meaningfully represented in palliative care research and promote more inclusive and responsive research practices.