Perceived family-centered care and post-traumatic stress in parents of infants cared for in the paediatric cardiac intensive care unit.

ABSTRACT

BACKGROUND: Family-centred care (FCC), while a core value of paediatric hospitals, has not been well-studied in the paediatric cardiac intensive care unit (PCICU). AIMS: To describe parents' perceptions of FCC provided by nurses in the PCICU during their infant's recovery from neonatal cardiac surgery and explore associations of perceptions of FCC on parent post-traumatic stress (PTS) 4 months post-discharge. STUDY DESIGN: Data obtained from a previously conducted randomized clinical trial (RCT) on telehealth home monitoring after neonatal cardiac surgery at three free-standing paediatric hospitals were analysed from a subset of 164 parents who completed the FCC Scale at hospital discharge, which measures a parent's experience of nursing care that embodies core principles of FCC. The RCT intervention was provided after hospital discharge, having no influence on parent's perception of FCC. The intervention also had no effect on PTS. RESULTS: Perceived FCC was lowest for items 'nurses helped me feel welcomed' and 'nurses helped me feel important in my child's care'. Having 12%-19% points lower perception of FCC at hospital discharge was associated with parent experience of six or more PTS symptoms, at least moderate PTS symptom severity, or PTS disorder diagnosis at 4-month follow-up. Every 10% increase in parental perceptions of FCC was associated with less PTS symptoms (ß = -0.29, SE = 0.12; p = .02) and lower PTS symptom cluster scores of arousal (ß = -0.18, SE = 0.08; p = .02). CONCLUSIONS: Parents who perceived lower FCC during their infants' hospitalization were at increased risk for the development of PTS symptoms, more PTS symptom severity and PTS disorder diagnosis 4-months post-discharge. RELEVANCE TO CLINICAL PRACTICE Nurses have a prominent role to support the implementation of FCC for infants with cardiac defects and their parents. FCC may positively influence overall parent mental health and well-being, reducing the trauma and distress of the PCICU experience.