Parent Perspectives of Neonatal Intensive Care at the End-of-Life
Creator
Currie ER; Christian BJ; Hinds PS; Perna SJ; Robinson C; Day S; Meneses K
Identifier
10.1016/j.pedn.2016.03.023
Publisher
Journal of Pediatric Nursing
Date
2016
Subject
Intensive Care Neonatal/st [standards]; Palliative Care/mt [methods]; Parents/px [psychology]; Professional-family Relations; Terminal Care/px [psychology]; Adaptation Psychological; Adult; Bereavement; Decision Making; Female; Humans; Infant Newborn; Intensive Care Neonatal/td [trends]; Intensive Care Units Neonatal; Interviews As Topic; Male; Palliative Care/px [psychology]; Perception; Qualitative Research; Stress Psychological; Terminal Care/mt [methods]; United States
Description
This descriptive qualitative study explored parent experiences related to their infant's neonatal intensive care unit (NICU) hospitalization, end-of-life care, and palliative care consultation. "Life and death in the NICU environment" emerged as the primary theme with the following categories: ups and downs of parenting in the NICU, decision-making challenges in the NICU, and parent support. Parents encountered challenges with areas for improvement for end-of-life and palliative care in the NICU. Further research is necessary to understand barriers with integrating palliative care and curative care in the NICU, and how NICU care affects bereavement and coping outcomes after infant death.
Rights
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Understanding parental experiences following infant death in the neonatal intensive care unit (NICU) is a high research priority and a necessary first step to improving health services. However, recruiting bereaved parents to discuss their experiences on such an extremely sensitive topic can be challenging and research procedures must be planned carefully in order to get an adequate sample. There is little published in the literature detailing specific strategies for recruiting bereaved parents for grief research, especially strategies for contacting parents and identifying factors that might affect participation. The purpose of this paper is to describe the process of recruiting bereaved parents into a qualitative research study exploring parental NICU experiences and grief responses following infant death. We describe a successful recruitment plan that led to the enrollment of difficult to recruit participants such as fathers, and individuals representing minorities and those from lower socioeconomic (SES) groups. Bereaved parents of infants after an NICU hospitalization should continue to be recruited for research studies for their unique perspectives and valuable insights about the devastating experience of infant death. Participants in this study reported more benefits than harm and the results addressed a critical gap in the literature.
2016-11
Rights
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Drawing on national, longitudinal Adoption and Foster Care Analysis and Reporting System data (2005-2015), demographic, health, foster care, and geographic characteristics of decedents (Nā=ā3,653) aged 1-17 years were examined. On average, decedents were 6 years old, the highest proportion died as infants, and experienced significant trauma in their short lives either through maltreatment or exposure to parental substance use. A noted increase in Medicaid coverage among decedents over time suggests critical access to concurrent treatment and hospice care, but this is unavailable to children with private insurance. This study has policy implications related to the 2010 Affordable Care Act.
Rights
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
The death of an infant in the neonatal intensive care unit (NICU) is a profound and unexpected loss for parents that results in a complex process of coping with bereavement. A descriptive qualitative approach was used to explore parent bereavement and coping experiences after infant death in the NICU. The Dual Process Model of Coping with Bereavement was used as a conceptual framework to help understand how parents cope with grief after infant death. Living with infant death was a process that resulted in major life changes and a process of oscillating among various coping strategies.
Rights
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).