The challenges relating to FCC reported by parents at both admission and discharge represent some of the key barriers that parents still face in terms of being truly involved in the care of their infant in the NICU. Similar themes at both time points suggest that parents need equal amounts of support during their stay in NICU, irrespective of the level of care the infant is receiving and whether they are approaching discharge. Implications for improving FCC more generally are discussed.

Background Exacerbated parental stress during a stay in the neonatal intensive care unit can negatively impact the development of the hospitalized infant, strain the dyadic relationship and put parents at risk for poor mental health. It is therefore important to identify risk factors of stress throughout the duration of a hospitalization. This longitudinal study aimed to investigate sources of stress for mothers and fathers who had a baby in the neonatal special care unit. Methods Parents of 57 singletons and 11 twins (68 infants) admitted to a neonatal special care unit (46% for prematurity) were recruited. Sixty‐four mothers and 20 fathers were assessed at admission, and 60 mothers and 16 fathers at discharge. Participants reported their satisfaction with hospital information and completed the Perceived Stress Scale, the Brief Illness Perception Questionnaire and the Dyadic Adjustment Scale. Results Parents demonstrated similar stress trajectories, with stress on average declining over time. Higher maternal stress at admission was associated with a belief that the baby's illness would have a longer timeline, lower perceptions of treatment efficacy and lower satisfaction with the information received from medical staff. Younger age and lower levels of education predicted higher maternal stress at discharge. Fathers had higher stress at discharge when they were older, had a baby born at younger gestation and felt they had less control. At admission, information satisfaction was positively associated with parental beliefs about treatment efficacy and understanding the infant's condition. At discharge, information satisfaction was negatively associated with beliefs about illness severity and the likely time frame of the illness. Conclusion The findings highlight that parents' perceptions of their baby's illness and treatment at admission and discharge have a significant association with stress. Clinical staff can use these factors to identify parents who are at risk of exhibiting a greater level of stress over the hospitalization period.