Listening to Young People on Childhood Death: A Youth‐Focused Participatory Approach to Children's Palliative and End‐of‐Life Research and Policymaking

ABSTRACT

Over the past three decades, children and youth (‘young people’) have been increasingly conceptualised as moral agents with rights and capacities to be meaningfully engaged in decisions affecting them. While evidence suggests that social spaces are opening to prioritise listening to these voices, gaps still exist. One such domain is young people's experiences with palliative and end‐of‐life (P‐EOL) care. Our team is conducting a national study to create opportunities for young people's views and experiences to be heard regarding P‐EOL care and policymaking in Canada. Our project is guided by a Childhood Ethics framework, recognising the moral agency of young people and using interdisciplinary methods to ensure their voices are considered. It proceeds with two phases, designed using a participatory approach with a qualitative methodology. Phase One is a consultation phase with youth advisors from Youth Advisory Councils and healthcare practitioner (HCP) advisors, through virtual focus groups and interviews. From consultations, generated data on how best to engage young people in research and policymaking pertaining to children's P‐EOL care has been used to inform Phase Two design. In this paper, we report on our Phase One consultations, detailing how they informed Phase Two design. Participants highlighted challenges related to recruitment and alternative means of engagement, the importance of using multi‐modal formats for ensuring informed consent, generating data, and mobilising study findings, and the utility of inviting young people to participate in discussions related to death, dying, and EOL care. Ours is one of the first Canadian studies to investigate young people's experiences with P‐EOL care, and the first Canadian study on childhood death and dying to employ a participatory approach. Findings presented here generate insights for researchers looking to conduct research with young people on sensitive topics through approaches that are attentive to their voices, perspectives, and agency.