Elsevier

Journal of Pediatric Nursing

Volume 31, Issue 5, September–October 2016, Pages 478-489
Journal of Pediatric Nursing

Parent Perspectives of Neonatal Intensive Care at the End-of-Life1

https://doi.org/10.1016/j.pedn.2016.03.023Get rights and content

Highlights

  • Parent experiences surrounding end-of-life care in the NICU were explored.

  • The opportunity to be a parent was important regardless of the infant's prognosis.

  • NICU nurses played a critical role in facilitating parenting.

  • Living with life-and-death decisions was an oscillating process for parents.

  • There are areas for improvement in palliative and end-of-life care in the NICU.

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.

Section snippets

Design and Methods

A descriptive qualitative design aims to present an inclusive summary of the phenomena in question in everyday language (Sandelowski, 2000, Sandelowski, 2010) and was used to explore and describe parent experiences related to their infant's NICU hospitalization, EOL care, and PPC consultation. In-depth, face-to-face interviews occurred up to four years after infant death in the NICU.

Parent and Infant Characteristics

A total of seven mothers (mean = 30 years, SD = 5.8) and three fathers (mean = 35 years SD = 7.1) were recruited, all of whom were the biological parents of their deceased infant. There was a notable range in household income and educational background among parents (Table 2). Six parents received PPC consultation while their infant was hospitalized in the NICU. While ten parents participated, two married couples were interviewed separately; therefore, a total of 10 parents of eight infants participated.

Discussion

The primary theme that emerged from these data was Life and Death in the NICU Environment and encompassed three categories: a) ups and downs of parenting in the NICU, b) decision-making challenges in the NICU, and c) parent support. Being a parent in the NICU was extremely important to these participants regardless of how much they could be involved in the care of their infant. Regardless of the strife endured, parents treasured the time they had with their infants however brief and nurses have

Limitations

Several limitations must be acknowledged. During the interviews, parents recalled events that occurred in the past. While these experiences were traumatic and not easily forgotten, it is possible that parents recalled some of their experiences inaccurately, or responded with socially desirable answers. However, these parents recalled their experiences in the NICU with vivid detail. The sample was comprised of more mothers (n = 7) than fathers (n = 3) and future studies should target an increased

Implications for Practice

While this was an exploratory study, findings suggest that there is much that can be done to improve the EOL care provided to parents of infants in the NICU. These results are important to nursing practice because the experiences of these parents can inform nurses about the difficulties parents faced during the NICU hospitalization and EOL care, serving as a reminder of how influential nursing care is for these families at the end of their infant's life. This is particularly important because

Future Research

The results of this study suggest that there are areas for improvement in the provision of EOL and PPC in the NICU that may be addressed by future research. Parents described research participation as a positive and cathartic experience and this population should continue to be recruited in future research efforts. Future research is needed to address the limitations present in the current study and should be expanded to include: (a) Investigating barriers to initiating PPC consultation from

Conclusions

The findings from this study identified the importance of exploring parents' experiences during their infant's care near the end-of-life in the NICU. The experiences of these parents living with decisions surrounding infant death in the NICU in this study provide support for the oscillating process described in the Dual Process Model (Stroebe & Schut, 1999). Being a parent in the NICU was extremely important for these participants regardless of the infant's prognosis. NICU nurses played a

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    Findings previously presented at the 10th Annual National Association of Neonatal Nurses Association Research Summit, March 24–26, 2015, Scottsdale, AZ and the American Academy of Hospice and Palliative Medicine annual meeting, March 9–12, 2016, Chicago, IL.

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