Research involvement and engagement
Co-designing engagement principles for involving children and young people in palliative care research in low- and middle-income settings
By Namisango E, Fraser LK, Nkhoma K and 13 others.
Abstract
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
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.