Family-centered care in neonatal intensive care units, long used to support fragile newborns, including those affected by fetal and neonatal alloimmune thrombocytopenia (FNAIT), shapes far more than survival, according to a qualitative study published recently in Children.
The study highlights emotional, social and system-level outcomes that are important to both families and clinicians.
For families navigating FNAIT, a rare immune condition that can cause severe bleeding and low platelet counts in newborns, the findings underscore how care that includes parents as partners may influence both immediate and long-term experiences.
Researchers analyzed perspectives from 27 stakeholders, including eight parents, one former neonatal patient and 18 healthcare professionals, through nine focus group discussions conducted across several countries.
Using a structured qualitative approach, they identified 42 distinct outcomes that families and clinicians view as essential when evaluating family-centered care in neonatal settings. These outcomes were grouped into five domains spanning emotional wellbeing, role functioning, delivery of care, infant physical health and hospital resources.
Read more about treatment and care for FNAIT
“These findings will directly inform the development of a comprehensive COS [core outcome set] and promote more inclusive and meaningful outcome assessment in neonatal research,” the authors wrote.
Emotional functioning emerged as a central theme. Parents described NICU admission as traumatic, marked by shock, fear, guilt, loneliness, anxiety and depression. These reactions are familiar to families facing FNAIT, where uncertainty about bleeding risk and neurological injury can heighten stress. Family-centered care was consistently described as a healing approach that helps reduce emotional distress for parents and supports infants and staff during prolonged and high-stakes hospital stays.
Role functioning was another key domain. Parents emphasized being treated as primary caregivers rather than visitors, even when infants require intensive monitoring or treatment for conditions such as FNAIT. Simple caregiving activities such as diaper changes, kangaroo care and feeding were seen as vital for bonding and confidence. A former neonatal patient highlighted how early separation can affect long-term feelings of belonging, reinforcing the importance of early and meaningful parent-infant connection.
The way care is delivered also mattered. Participants reported that staff attitudes, communication and education strongly influenced whether family-centered care succeeded. Clear explanations, empathy and repeated conversations helped parents understand complex conditions and treatments, including immune-mediated disorders such as FNAIT. Training healthcare professionals to value family involvement was seen as essential to consistent care.
Beyond emotional and relational effects, family-centered care was linked to practical benefits. Participants believed it could shorten hospital stays, reduce readmissions and lower emergency department visits, leading to better use of hospital resources. For families managing FNAIT and other serious neonatal conditions, these findings suggest that involving parents as partners may improve not only the hospital experience but also transitions home and longer-term wellbeing.
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