Aims Whilst patient turnover in the Paediatric Intensive Care Unit (PICU) is high with an average stay of 2 days, improvements in life-sustaining treatments have resulted in increasing numbers of children who are hospitalised for long periods of time. A child’s admission to the PICU induces high levels of stress and anxiety in parents. A growing number of research studies have explored the needs of family members of critically ill children. However, little is known about the experience of parents who have a child in the PICU for a prolonged period of time.

Methods Semi-structured interviews were conducted with 17 members of staff (3 consultants, 7 nursing staff and 7 allied-health professionals) and 27 parents whose child had a long-stay in one of three units providing intensive care at a tertiary paediatric hospital. Framework Analysis was used to analyse the data.

Results Every family is different in how they cope and adapt to being in the PICU for a prolonged period of time. Despite differences, a number of things characterised long-stay parents’ experiences of being in the PICU. Parents adjusted to being in the PICU, developing routines which supported coping. Long-stay parents were grateful for any opportunity to be involved in their child’s care and relied upon the nursing staff to facilitate this. Their exposure to the PICU resulted in increased knowledge of their child’s condition and the environment. This knowledge led to heightened sensitivity to, and awareness of, the care provided by staff; both the good and bad. Moving on from the PICU can be particularly difficult for long-stay parents who have become accustomed to life in the PICU.

Conclusion Long-stay families will likely become more familiar with the environment, more knowledgeable about their child’s medical needs and more familiar with the staff looking after their child than average-stay parents in the PICU. They are likely to seek a greater involvement in their child’s care and may be more critical of the care provided by staff. This has implications for staff working in the PICU.