Parental experiences in the NICU are often characterized by psychological stress and anxiety following the birth of a critically ill or premature infant. Such stress can have a negative impact on parents and their vulnerable infants during NICU hospitalization as well as after discharge. These infants are also at increased risk for adverse developmental, cognitive, academic, and mental health outcomes. Identifying parents at risk for psychological distress is important and feasible with the use of well-validated screening instruments. Screening for psychological distress is essential for identifying families in need of referral for psychological support and resources. Numerous interventions have been implemented in the NICU to support parents. These include staff-based support such as wellness rounds and education in developmental care as well as parental-based support that includes cognitive behavioral therapy and home visitation programs. Comprehensive interventions should use a multidisciplinary approach that involves not only NICU staff but also key stakeholders such as social workers, spiritual/religious representatives, specialists in developmental care, and psychiatrists/psychologists to help support families and facilitate the transition to the home. Future efforts should include raising awareness of the psychological stresses of NICU parents and encouraging the development of programs to provide parents with psychological support.
Background In high income countries, guidelines exist recommending gestational age thresholds for offering and obligating neonatal resuscitation for extremely preterm infants. In low- and middle- income countries, this approach may be impractical due to limited/inconsistent resource availability and challenges in gestational dating. Scant literature exists on how clinicians in these settings conceptualize viability or make resuscitation decisions for premature infants. Methods Qualitative interviews of interprofessional neonatal clinicians were conducted in Kumasi, Ghana, at Komfo Anokye Teaching Hospital and Suntreso Government Hospital, and in Addis Ababa, Ethiopia, at St. Paul’s Hospital Millennium Medical College. Transcribed interviews were coded through the constant comparative method. Results Three discrete major themes were identified. The principal theme was a respect for all life, regardless of the likelihood for survival. This sense of duty arose from a duty to God, a duty to the patient, and a duty intrinsic to one’s role as a medical provider. The duty to resuscitate was balanced by the second major theme, an acceptance of futility for many premature infants. Lack of resources, inappropriate staffing, and historically high local neonatal mortality rates were often described. The third theme was a desire to meet global standards of newborn care, including having resources to adopt the 22–25-week thresholds used in high income countries and being able to consistently provide life-saving measures to premature infants. Conclusions Neonatal clinicians in Ghana and Ethiopia described respect for all life and desire to meet global standards of newborn care, balanced with an awareness of futility based on local resource limitations. In both countries, clinicians highlighted how wide variations in regional survival outcomes limited their ability to rely on structured resuscitation guidelines based on gestational age and/or birthweight.
Objectives: Many serious or life-threatening neurologic conditions are first diagnosed during the fetal period, often following a routine ultrasound or sonographic evaluation after an abnormal aneuploidy screen. Such conditions represent a worrisome or unexpected finding for expectant parents, making the perinatal period a critical time point to engage and empower families encountering complex neurologic clinical scenarios. This review covers the role of perinatal palliative care in these settings. Study Design: Topical review Results: The prenatal identification of structural abnormalities of the brain or spinal cord, radiographic signs of hemorrhage or ischemic injury, or evidence of genetic or metabolic conditions should prompt involvement of a fetal palliative care team. The inherent prognostic uncertainty is challenging for prenatally diagnosed neurologic conditions which have difficult to predict short and long-term outcomes. While many of these conditions lead to the birth of an infant with neurodevelopmental challenges, few result in in utero demise. Palliative care beginning in the perinatal period provides an additional layer of support for families navigating complex decision-making during their pregnancy and provides continuity of care into the newborn period. Palliative care principles can help guide discussions around genetic and other diagnostic testing, fetal surgery, and birth planning. A multidisciplinary team can help support families with decision-making and through bereavement care in the setting of fetal or neonatal death. Conclusion: Early palliative care team involvement can provide a more holistic approach to counseling, facilitate planning, and ensure that a family's goals and wishes are acknowledged throughout an infant's care trajectory. Key Points
Many childhood neurologic conditions are first diagnosed in the perinatal period and shorten or seriously alter the lives of affected infants. Neonatal neuropalliative care incorporates core practices and teachings of both neurology and palliative care and is directed toward patients and families affected by serious neurologic conditions in the antenatal and immediate newborn period. This review outlines key considerations for neurologists hoping to provide a neuropalliative care approach antenatally, in the neonatal intensive care unit, and around hospital discharge. We explore 4 core domains of neuropalliative care: (1) family-centered communication, (2) prognostication, (3) decision making, and (4) pain and symptom management. We address special considerations in care at the end of life and in varied cultural and practice contexts.
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