The Development of Parental Knowledge of Their Child in NNU and PICU: An Exploratory Qualitative Study of Parents'...

Advancements in neonatal and paediatric intensive care have improved survival of children born very preterm or with complex health conditions. However, many of these children will subsequently require admission to paediatric intensive care. How families navigate experiences and knowledge across these different admissions remains poorly understood.

To explore the experiences of parents with a child admitted to both a neonatal unit (NNU) and a paediatric intensive care unit (PICU) with a focus on the development of parental knowledge.

We conducted an exploratory qualitative study. Semi-structured interviews were conducted with 18 parents of 15 children who experienced admission to both NNU and PICU. Participants were recruited via national charities and interviewed remotely. Data were analysed using inductive content analysis, focussing on parents' temporal experiences.

Parents described knowing their child as a dynamic state evolving throughout the NNU to the PICU. In the NNU, parents initially learned to know their child through hands-on care, often facilitated by staff, though physical and emotional barriers sometimes hindered bonding. Discharge from NNU was a key transition moment, with some parents feeling confident while others felt uncertain about managing their child's healthcare needs at home without the support of staff and medical equipment. At PICU admission, parents brought experiential knowledge, the value of which was not always recognised by healthcare professionals. This lack of acknowledgement sometimes led to missed opportunities for provision of safe care. During PICU stays, parents wanted their expertise respected and integrated into care, particularly for children requiring ongoing specialist care, which was often provided by families, outside of PICU.

Parental knowledge of their child, and their previous experiences, is vital to support safe care delivery but sometimes overlooked. Recognising parents as expert and equal partners in care can potentially improve safety, communication and family-centred practice.

Neonatal and paediatric healthcare teams should actively acknowledge and incorporate parental expertise during and when transitioning between NNU and PICU. Parents' experiences provide additional insights, which provide opportunities for better care. Improved communication across neonatal and paediatric services may enhance outcomes and parental confidence.