"Quality of life": parent and neonatologist perspectives
medical ethics; quality of life
OBJECTIVE: To assess how physicians and families understand quality of life (QOL) for NICU patients, and to explore the feasibility of developing a standardized definition for QOL. STUDY DESIGN: Surveys were developed and administered to neonatologists and eligible families. Quantitative analysis was conducted using standard statistical methods. Qualitative analysis was conducted using NVivo software. Focus groups were conducted with the same groups, and audio recordings were obtained and analyzed for recurring themes. RESULTS: Both parents and physicians value QOL as a metric for guiding care in the NICU. Parents were more likely to accept higher levels of disability, while neonatologists were more likely to accept higher levels of dependence on medical equipment. In relation to infant QOL, predominant themes expressed in the parent focus groups were stress levels in the NICU, advocating as parents, and the way in which long-term outcomes were presented by the medical team; in the physician focus group, the ambiguity of predicting outcomes and thus QOL was the main theme. CONCLUSIONS: Both parents and physicians recognize the importance of QOL in the decision-making process for critically ill infants, but the two groups differ in their assessment of what QOL means in this context. These data suggest that QOL cannot be adequately defined for standardized use in a clinical context, and as such, should be used thoughtfully by neonatologists in discussions of end- of-life care.
Adams S Y; Tucker R; Clark M A; Lechner B E
Journal of Perinatology
2020
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).
<a href="http://doi.org/10.1038/s41372-020-0654-9" target="_blank" rel="noreferrer noopener">10.1038/s41372-020-0654-9</a>
Providing Support for Neonatal Intensive Care Unit Health Care Professionals: A Bereavement Debriefing Program
end-of-life care; end-of-life experiences; NICU staff; professional quality of life
OBJECTIVE: The aim of this study is to evaluate formal bereavement debriefing sessions after infant death on neonatal intensive care unit (NICU) staff. STUDY DESIGN: Prospective mixed methods study. Pre- and postbereavement debriefing intervention surveys were sent to clinical staff. Evaluation surveys were distributed to participants after each debriefing session. Notes on themes were taken during each session. RESULT(S): More staff attended sessions (p<0.0001) and attended more sessions (p<0.0001) during the postdebriefing intervention epoch compared with the predebriefing epoch. Stress levels associated with the death of a patient whose family the care provider have developed a close relationship with decreased (p=0.0123). An increased number of debriefing session participants was associated with infant age at the time of death (p=0.03). Themes were (1) family and provider relationships, (2) evaluation of the death, (3) team cohesion, (4) caring for one another, and (5) emotional impact. CONCLUSION(S): Bereavement debriefings for NICU staff reduced the stress of caring for dying infants and contributed to staff well-being. KEY POINTS: . Providing end-of-life care in NICU is challenging.. . Debriefings assist staff in coping with grief.. . Staff well-being impacts patient care.. Copyright Thieme. All rights reserved.
Hawes K; Goldstein J; Vessella S; Tucker R; Lechner B E
American journal of perinatology
2020
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).
<a href="http://doi.org/10.1055/s-0040-1716481" target="_blank" rel="noreferrer noopener">10.1055/s-0040-1716481</a>