A new global review published in the Journal of Global Health highlights how models of person- and family-centered care are being developed and applied in neonatal medicine, with lessons that could be highly relevant for families affected by rare conditions like fetal and neonatal alloimmune thrombocytopenia (FNAIT).
The study examined more than 10,000 records and distilled 91 key documents to map how newborn and family-centered care is being defined and practiced around the world. The researchers found that there is no single definition of what family-centered care means in neonatology. Rather, they identified forty different definitions, nearly thirty models of care and over fifty categories of interventions.
Some of these approaches emphasized supporting the infant’s developmental and medical needs, while others focused on ensuring families are deeply involved in day-to-day care. A growing number of models promoted keeping mothers and babies together during hospital stays. Widely recognized methods such as Kangaroo Mother Care, Family Integrated Care and individualized developmental care programs were featured prominently.
Interestingly, while almost all models included family support and individualized infant care components, few addressed support for health care staff. This is concerning, since well-supported clinicians are better able to care for newborns and families facing receiving neonatal care.
The lack of a centralized definition of person- and family-centered care has practical consequences, researchers say. Without shared language and standards, hospitals may adopt inconsistent practices, leaving some families with strong support while others receive little.
For families living through a diagnosis of FNAIT, these findings underscore how essential it is to have care frameworks that value parents as partners and prioritize keeping the infant’s needs central. FNAIT often requires highly specialized monitoring and interventions, sometimes including transfusions or other invasive procedures shortly after birth. This can be overwhelming for families who might feel sidelined by the intensity of medical decision-making. Models that prioritize parental participation and emotional support can help bridge this gap, ensuring parents remain a central part of care.
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The review concludes that person- and family-centered care in neonatology holds enormous promise, but still lacks a unified definition and consistent application. For families navigating the FNAIT, this work reinforces the importance of pushing for neonatal care systems that not only treat the medical condition but also actively support and include families at every step.
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