Parent Perspectives of Neonatal Intensive Care at the End-of-Life1
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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2023, Journal of Pediatric NursingCitation Excerpt :We found that many families appeared to not to have received follow up bereavement support from the hospital after the first week following the death of their child, and several had no documented follow up. Bereavement support is recommended to comprise support for the whole family, that includes a plan identifying a key person or team who will provide follow up, an opportunity to meet with the healthcare team to address matters related to their infant's care and death, and identifying community support services (Currie et al., 2016; Kenner et al., 2015; Western Australian Department of Health, 2021). Tan et al. (2012) explored the experience of parents whose infants died in acute care settings, highlighting the importance of anticipatory bereavement care to support parents with the death of their child.
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2023, Principles of NeonatologyParental support needs during pediatric resuscitation: A systematic review
2022, International Emergency NursingCitation Excerpt :In addition to support from healthcare professionals, parents needed close persons who could attend to their personal and emotional support and physical needs [8,18,26]. Parents wanted family and friends, especially their spouse, to be with them when their child died [8,18–20,25,26]. Parents also needed to talk to staff and others about their dead child [20,25,32].
Barriers and facilitators to shared decision-making in neonatal medicine: A systematic review and thematic synthesis of parental perceptions
2022, Patient Education and CounselingCitation Excerpt :This paternalistic environment meant that some parents felt powerless and that they were not offered a choice [48,49,58,61,62,65]. Parents sometimes felt that their parental rights to decide were not respected [65]. "They were supposed to call us and they never called.
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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.