Parental and family presence are essential: A qualitative study of children's lived experiences with family presence in pediatric intensive care.

Objective: To better understand critically ill children's lived experiences with family presence in the pediatric intensive care unit (PICU).

Study design: This qualitative, interpretive phenomenological study is grounded in a Childhood Ethics ontology. We recruited children (aged 6-17 years) admitted to one of four participating Canadian PICUs between November 2021-July 2022 using maximum variation sampling. Data generation methods included participant observation and semi-structured interviews. Field-notes and interview transcripts were analyzed following the SAMMSA (Summary &Analysis coding, Micro themes, Meso themes, Syntheses, and Analysis) approach.

Results: Fourteen participants (7 boys; 7 girls) described parental presence in PICU as essential. Parents contributed to their sense of safety, acted as advocates and interlocuters, and were crucial to participants' belief that their voices would be heard and their needs met. Participants valued the ways in which family and visitor presence mitigated the disruptions that being in PICU caused to their social worlds. Age limits restricted sibling and peer interaction and inadvertently restricting parental presence due to sibling childcare needs.

Conclusions and implications: Parental figure presence in PICU is essential for children. Policies that focus on children as patients instead of whole people discredit childrens' concerns and the ways parental figures mitigate the disruptive nature of PICU admissions. Future policy generation must involve children to ensure that their priorities and concerns are meaningfully recognized.