Perspectives from bereaved parents on improving end of life care in the NICU.

Abstract

Although improving end-of-life (EOL) care for children and their families is a national priority (American Academy of Pediatrics, Committee on Bioethics and Committee on Hospital Care, 2000; Institute of Medicine, 2003), research in the neonatal intensive care unit (NICU) is limited. To improve care, there is a critical need to understand the experiences of these infants and their caregivers. Therefore, we conducted a retrospective study to examine parent perceptions of their infants' care at EOL in the NICU between 3 months and 5 years of their infant's death (M ϭ 38.10 months, SD ϭ 16.87). As part of this pilot study, 29 mothers and 16 fathers representing 31 infants participated in qualitative interviews assessing parents' satisfaction with their involvement in their infants' care and decision-making and their advice to NICU providers. Four themes emerged from interview data, including parents as partners in care, communication with the health-care team, relationships with staff, and bereavement support. Both mothers and fathers generally felt positive about their role in treatment decisions, relationships with staff, and memory-making activities. Parents noted areas for improvement, including team communication, anticipatory guidance, family inclusion at bedside, and bereavement care. This study provides a deeper understanding of parents' experience with their infants at EOL and highlights opportunities for enhancing care. Pediatric psychologists can play an important role in facilitating communication between parents and the health-care team as well as providing bereavement support for these vulnerable families.

Mothers Caring for a Child at End of Life: A Systematic Review

“…One concern with parents as decision-makers was the guilt parents experienced in making EOLC decisions (Youngblut et al, 2017). Parents thought it was necessary to discuss EOLC options with healthcare professionals and appreciated honesty with their child's prognosis (Baughcum et al, 2017). Healthcare professionals empowered parents when they considered the parents' values in their child's healthcare plan (De Vos et al, 2015).…”

“…A child's EOL is impacted positively by their siblings' presence (Baughcum et al, 2017). It was reported that siblings distracted the child from the undesired symptoms of the illness and treatments (Baughcum et al, 2017). The siblings were considered a support system for the dying child and parents (Widger et al, 2015).…”

“…Some siblings reported feeling neglected by their parents while caring for the terminally ill child (Arruda-Colli et al, 2016). Therefore, the death of the child is a life-changing experience for siblings (Baughcum et al, 2017;Youngblut et al, 2017).…”

“…The studies included in this systematic review were six qualitative studies, three quantitative studies, and two mixed methods studies (see Tables 1 and 2). The studies were conducted in different countries including, Saudi Arabia (Katooa et al, 2015), Jordan (Atout et al, 2017), Brazil (Arruda-Colli et al, 2016), Netherlands (De Vos et al, 2015, Taiwan (Lou, Mu, Wong & Mao, 2015), England (Popejoy, 2015), Switzerland (Zimmermann et al, 2016), and the United States (Arutyunyan et al, 2018;Baughcum et al, 2017;Haley & Walker, 2016;Ohs et al, 2015). The studies were conducted by researchers representing different disciplines, including nursing and medicine.…”

“…Throughout the world, researchers have explored parents, and particularly mothers', experiences with their children who are at end of life (EOL) (Arutyunyan et al, 2018;Arruda-Colli et al, 2016;Atout et al, 2017;Baughcum et al, 2017;De Vos et al, 2015;Haley & Walker, 2016). Mother with children at EOL experience mental, psychological, physical, social, financial, and spiritual alterations during that period (Arruda-Colli et al, 2016;Atout et al, 2017;Lou et al, 2015).…”