Creating a home with a critically ill child: A qualitative study exploring the experiences of parents of children admitted to paediatric critical care following treatment in neonatal care

Abstract

Background: Survival of children with complex medical conditions has increased over time. Around 5% of children admitted to a neonatal unit (NNU) later have an admission to a paediatric intensive care unit (PICU) in early life. No work to date has explored the needs of parents who have a child admitted to both of these healthcare settings.

Objective: The overall aim of this study was to understand parents' experiences as they navigate the transition between admissions to the NNU and the PICU. This paper reports on one of the themes (creating a home) identified inductively from the dataset.

Methods: We used a qualitative research design using semistructured interviews with parents who had a child (or children) who had been admitted to neonatal care after birth and then subsequently were also admitted to a PICU. We recruited a national purposive sample of parents with experiences of having a child treated in an NNU before being admitted to the PICU. We undertook the interviews and transcribed them before taking a reflexive thematic analysis approach.

Results: A total of 15 mothers and three fathers, of 17 children, were interviewed between January and March 2022. 'We identified 'creating a home' as a key inductive theme with three subthemes: (i) developing parental roles; (ii) creating a physical home; and (iii) creating core memories.

Conclusions: There is a growing cohort of children living with chronic health conditions. In this work, we have explored how their parents establish a home whilst often spending significant periods within the public arena of intensive care. Families across settings need support from healthcare professionals to help them develop their role as parents, build a home, and to create memories together.

Keywords: Children; Neonatal care; Paediatric intensive care; Parent experience.