An international team of healthcare professionals, parents and former patients agreed on a standard set of 10 outcomes that future studies of family-centered care in newborn intensive care should measure and report, according to a study published recently in Children.
Newborns affected by fetal and neonatal alloimmune thrombocytopenia (FNAITFetal and neonatal alloimmune thrombocytopenia A rare condition in which a mother’s immune system attacks fetal platelets, leading to dangerously low platelet levels before and/or after birth.) may be admitted to the neonatal intensive care unitNeonatal intensive care unit A specialized hospital unit for newborns who need close monitoring and treatments such as platelet transfusions. (NICUNeonatal intensive care unit A specialized hospital unit for newborns who need close monitoring and treatments such as platelet transfusions.) for close monitoring, and those with very low platelet counts may need platelet transfusions to prevent or treat bleeding.
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Family-centered care is a model in which parents and healthcare staff work together as partners in a baby’s care—an approach that research links to better bonding, healthier babies and improved well-being for parents. Studies that test it, however, tend to report widely varying outcomes, making it hard to combine their results into reliable evidence.
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The researchers set out to address this by creating a core outcome set — a single, agreed list of outcomes that future studies of family-centered care should measure — so their findings can be compared more easily.
To build the list, the researchers first gathered 194 possible outcomes from published reviews and from discussions with parents, former patients and clinicians, then narrowed them to 72. More than 100 participants from 39 countries were included to rate their importance across three online survey rounds, and a smaller expert group finalized the set at an online meeting.
Six of the outcomes center on parents. They cover the emotional side of the experience, a parental bond with a baby that stays in the NICU, and the stress a parent carries, along with how involved parents are in everyday care, how involved they are in decisions about their baby, and how well they understand the treatment their baby is receiving. The last looks ahead to going home: whether parents feel ready to care for their baby themselves after discharge.
The remaining four outcomes center on the baby’s own progress and safety: how well the infant grows, the pain and stress they experience, how long they stay in the NICU, and whether they develop a nosocomial infection (infection acquired during the hospital stay).
The researchers wrote that family-centered care in newborn intensive care “can improve infant and family outcomes.” Their next step, they said, is to agree on standard definitions for each outcome and the specific tools used to measure them, so that results from different studies can be compared with confidence.
