Co-creating death and grief literacies with young people: A case-based example of youth engagement in research in Canada

Background Death literacy refers to the knowledge and skills that make it possible to understand, gain access to, and act upon end-of-life and death care options. Grief literacy focuses on the capacity to access, process, and use knowledge related to experiences of loss. Despite growing attention to death and grief literacies in public health research, theory, and practice, young people are rarely involved as active contributors to their development, and often remain passive recipients of education about death, dying, and grief. Objective Grounded in Childhood Ethics scholarship, this project aimed to explore: (a) how a multigenerational research team involving youth researchers and non-youth researchers experienced conducting a study on youth engagement in palliative and end-of-life care; and (b) the ways in which the research process could support the co-creation of knowledge on death and grief literacies. Design A case-based approach was used to explore the experiences of multigenerational research team members involved in a national study on pediatric palliative and end-of-life care in Canada. Methods Reflexive accounts from youth researchers (n = 2) and non-youth researchers (n = 4) were gathered during multiple reflexive team conversations. Results Analysis of team member accounts identified five themes regarding the co-creation of death and grief literacies within a multigenerational research team, including: (1) challenging societal silences around death, dying, and grief among young people; (2) expanding death and grief literacies into social networks; (3) fostering trust and intellectual humility; (4) legitimizing youth researcher contributions; and (5) engaging in reciprocal learning. Conclusion Our results suggest that engaging young people in research on palliative and end-of-life care can function as a way of reflecting upon, expanding, and advancing death and grief literacies. We propose that death and grief literacies may be understood as participatory, relational, and multigenerational practices, and suggest implications for public health, palliative care, and youth engagement research and practice.