About this Research Topic
Prenatal detection of congenital anomalies leads to the identification of infants who are affected by life-limiting conditions, many with a short life expectancy. Moreover, a significant number of newborns admitted to the neonatal ICU (NICU) in critical condition face potentially adverse prognoses.
Perinatal palliative care (PPC) is a comprehensive interdisciplinary approach for the care of newborns with life-limiting or life-threatening conditions. The goal of care is achievement of a state of comfort by satisfaction of the newborn’s basic needs. In addition, PPC addresses needs, expectations, and psychosocial and spiritual support for families within a culturally sensitive framework; it also provides support for professionals.
PPC addresses the perinatal journey that starts prenatally with the diagnosis of a life-limiting or life-threatening condition, continues at birth, and follows the neonate along his/her life with the family as an inpatient and may continue into the post-discharge outpatient time-frame. It also offers a plan of choice for improving the neonate’s quality of life when the prolongation of life is no longer the goal of care for a critically ill neonate treated in the NICU.
The interdisciplinary approach of PPC requires collaboration among professionals from several disciplines, including high-risk obstetricians, neonatologists, and other specialists, according to each specific diagnosis. Moreover, the comprehensive approach of PPC includes services to help provide comfort to the baby (lactation consultant, speech pathologist, OT/PT) and emotional, psychological and spiritual support to families (Social Work, Psychology, Child Life and Chaplaincy or engaging the family’s faith community).
Although some hundred programs of PPC are reported internationally and in the USA, there is no current standard of PPC team composition or service provision for the fragile population it addresses.
We are calling for papers regarding multiple aspects of PPC including:
• State of science
• How to develop a PPC program
• Potential barriers to PPC consultation
• Quality improvement measures in PPC
• Garnering an interdisciplinary PPC team
• Key interventions and staff’s role along the perinatal journey
• Identifying candidates for PPC prenatally and postnatally
• How to conduct a perinatal and neonatal palliative care consult
• Decision-making processes in PPC
• Palliative interventions to provide comfort to neonates with life-limiting conditions
• The end-of-life care for neonates: assessing and addressing discomfort/pain and other symptoms
• Early palliative interventions to support quality of life for critically ill neonates with life-threatening conditions
• Supportive emotional, psychological, and spiritual interventions for parents, siblings and families
• Cultural and religious dimensions of PPC
• PPC in different traditions, cultures and religions
• Short and long-term perinatal-neonatal bereavement programs
• Nursing strategies in the delivery room, post-partum and NICU
• Interventions to support professionals (care for the caregiver) involved in PPC
• Ethical and legal aspects of PPC in different countries
Keywords: Perinatal Palliative Care, Neonatal Palliative Care, Comfort Care, Life-limiting Condition, End-of-life Care
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