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Abstract

Providing psychosocial support to families who are expected to give birth to an infant with a life-limiting condition and to parents of infants in the Neonatal Intensive Care Unit (NICU) are essential elements of high quality perinatal and neonatal care respectively. A primary goal of providing parental support is to ensure that equal attention is given to the healthy functioning of the family as to the medical outcome of the baby. A key component to ensuring the quality of this care is to provide both education and support to the health professionals who work with these families. Yet uniform program guidelines are not present, nor are educational guidelines for health professionals readily available. The National Perinatal Association (NPA) convened a multidisciplinary group of professionals and NICU parents to build consensus at a national level for generating these guidelines. One area of focus was standards for palliative care and bereavement. The team reviewed literature and reflected on current practices in perinatal, neonatal and community settings during the perinatal period in the NICU and beyond. A key finding was that many health professionals lacked training in this area and did not know what community resources were available. It was agreed that palliative care and bereavement services should be available to any family whose fetus or neonate is facing a life-threatening condition or imminent death. This type of care requires a commitment to a family-centered integrative approach to perinatal, neonatal and infant care, as well as knowledge of appropriate community resources.

Biography

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