Do Health Disparities in the Deep South Impact Neonatal Palliative Care? Parents Perspectives
To reduce health disparities, now is the time to focus research efforts on improving early access to pediatric palliative care (PPC) and enhancing quality of life for infants suffering with serious illness and their parents. In 2013, over 23,000 infants died in the U.S. Within acute care settings, the majority of infant and child deaths occur within the neonatal intensive care unit (NICU) and pediatric intensive care unit. Pediatric palliative care (PPC) is recommended at time of diagnosis for infants with serious illness and their parental caregivers to improve quality of life and reduce suffering. Due to ethical dilemmas, difficult prognostication, and parental fear of giving up on hope for survival, PPC integration in NICU settings remains complex. NICU PPC care is further complicated in historically underserved minority and rural populations because of cultural beliefs about palliative care, prevalent health disparities and lack of access to PPC. The purpose of this proposal is to explore experiences of infants and parents receiving PPC in NICUs in the Deep South to describe unmet needs and care disparities to prepare for future intervention development. Using sequential explanatory mixed methods methodology, this innovative study will address an understudied area within PPC with a racially and sociodemographically diverse population. The findings from this study will lead to development of a culturally-based intervention that will improve access to PPC in the Deep South and improved quality of life for infants with serious illness and their parent caregivers.
Erin Currie, PhD, RN, is an Assistant Professor in the
School of Nursing at the University of Alabama at Birmingham. Her research in
neonatal and pediatric palliative care has focused on bereaved parents of
infants after death in the neonatal intensive care unit and their experiences
with pediatric palliative care. Dr. Currie is currently exploring the reach,
quality, and impact of pediatric palliative care services in the Deep South, where
historically underrepresented populations experience health disparities due to
geographic and sociocultural factors such as race. Dr. Currie is a 2017 NPCRC
Junior Faculty Career Development Awardee.