Shifting sands: How parents engage with the idea of their child's death

While parental prognostic awareness is a vital concept, its complexity can sometimes be underestimated. Our study aimed to understand how parents of children with serious illness engage with the idea of their child's death from a lived experience perspective.

Bereaved parents of children known to a statewide pediatric palliative care service, who died at the age of 16 years or younger from any medical condition, participated in semi-structured interviews. Reflexive thematic analysis was employed, informed by a phenomenological framework.

Twenty bereaved parents (6 fathers) participated; children ranged in age from 1 day to 16 years. Findings were categorized into 2 main themes: (1) Daily realities of engaging with the idea of death, with subthemes: variability in contemplating death, conversations with their child, conversations with family and friends, conversations with clinicians, making treatment decisions, and not engaging with death, and (2) factors influencing engagement, with subthemes: implicit factors, changes in clinical condition, and clinician communication.

Parents' engagement with the idea of their child's death was individual and dynamic. Our findings offer tangible examples of how parents contemplate and operationalize this engagement over time, helping clinicians appreciate the complex and non-binary nature of prognostic awareness. Clinicians should explore how parents engage with the idea of their child's death both during and outside clinical encounters over time, acknowledge their role in supporting and guiding parents, and recognize that there is no single way for parents to process the idea of their child's death.