Exploring Parent Experiences With Early Palliative Care Practices in the NICU
Palliative Care; NICU; parent experiences
BACKGROUND: The anxiety and uncertain outcome of an admission of a seriously ill infant to the neonatal intensive care unit (NICU) can cause great stress for parents and contribute to poor mental health outcomes. Early implementation of family-centered palliative care (PC) may provide support for NICU parents. Key concepts of early PC in the NICU include shared decision-making, care planning, and support for coping with distress. PURPOSE: The purpose of this study was to explore parent experiences during their child's NICU admission with the early PC practices of shared decision-making, care planning, and coping with distress. METHODS: Qualitative descriptive methodology was used. Strategies of reflexive journaling, peer debriefing, and data audits were used to enhance trustworthiness. Parents (N = 16) were interviewed, and data were analyzed by conventional content analysis. Targeted recruitment of fathers occurred to ensure they comprised 25% of sample. RESULTS: Parents' descriptions of decision-making were contextualized in gathering information to make a decision, the emotional impact of the decision, and influences on their decision-making. In experiences with care planning, parents described learning to advocate, having a spectator versus participant role, and experiencing care planning as communication. Key themes expressed regarding parental coping were exposure to trauma, survival mode, and a changing support network. IMPLICATIONS FOR PRACTICE AND RESEARCH: These findings highlight key areas for practice improvement: providing more support and collaboration in decision-making, true engagement of parents in care planning, and encouraging peer support and interaction in the NICU and in online communities.
Quinn M; Gephart S; Crist J
Advances in Neonatal Care
2024
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/10.1097/anc.0000000000001137" target="_blank" rel="noreferrer noopener">10.1097/anc.0000000000001137</a>
Clinician perception of care at the end of life in a quaternary neonatal intensive care unit
Infant, Newborn; palliative care; symptom management; Intensive Care Units, Neonatal; Intensive Care Units; Nicu; neonatal death; end of life care; quality of death
INTRODUCTION: Care for neonates at the end of life (EOL) is often challenging for families and medical teams alike, performed suboptimally, and requires an experienced and compassionate clinician. Much literature exists on adult and pediatric EOL care, but limited studies examine the neonatal process. METHODS: We aimed to describe clinicians' experiences around EOL care in a single quaternary neonatal intensive care unit as we implemented a standard guideline using the Pediatric Intensive Care Unit-Quality of Dying and Death 20 tool. RESULTS: Surveys were completed by 205 multidisciplinary clinicians over three time periods and included 18 infants at EOL. While most responses were high, a meaningful minority were below goal (<8 on 0-10 scale) for troubling symptom management, conflict between parents and staff, family access to resources, and parent preparation of symptoms. Comparison between Epochs revealed improvement in one symptom management and four communication categories. Satisfaction scores related to education around EOL were better in later Epochs. Neonatal Pain, Agitation, and Sedation Scale scores were low, with few outliers. DISCUSSION: These findings can guide those aiming to improve processes around neonatal EOL by identifying areas with the greatest challenges (e.g., conflict management) and areas that need further study (e.g., pain management around death).
Imai L; Gray MM; Kim BJH; Lyle ANJ; Bock A; Weiss EM
Frontiers in Pediatrics
2023
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/10.3389/fped.2023.1197360" target="_blank" rel="noreferrer noopener">10.3389/fped.2023.1197360</a>
Neonatal euthanasia in the context of palliative and EoL care
End-of-life care; Ethics; Palliative care; Infant Newborn; Decision-making; Nicu; Neonatal euthanasia
Neonatal deaths can be categorized in 5 modes along the dimension of intervention and physiology. This classification can be helpful to analyze the choices that can be made in end-of-life care in the NICU. In the Netherlands, neonatal euthanasia became an optional 6th mode of death since publication and legalization of the Groningen Protocol. This paper summarizes the history, legal status and ethical justification of the Groningen Protocol, and describes end-of-life practice in the subsequent years. Since the implementation of the Groningen Protocol, the practice of neonatal euthanasia has almost disappeared. Simultaneously, there has been spectacular growth in neonatal palliative care programs in the Netherlands. Is there still a need for this last-resort option?
Verhagen AAE
Seminars in Fetal and Neonatal Medicine
2023
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="https://www.sciencedirect.com/science/article/pii/S1744165X2300015X?via%3Dihub">10.1016/j.siny.2023.101439</a>
End-of-life care over four decades in a quaternary neonatal intensive care unit
end-of-life; neonatal; NICU
Aim Death in the neonatal intensive care unit (NICU) commonly follows a decision to withdraw or limit life-sustaining treatment. Advances in medicine have changed the nature of life-sustaining interventions available and the potential prognosis for many newborn conditions. We aimed to assess changes in causes of death and end-of-life care over nearly four decades. Methods A retrospective review of infants dying in the NICU was performed (2017?2020) and compared with previous audits performed in the same centre (1985?1987 and 1999?2001). Diagnoses at death were recorded for each infant as well as their apparent prognosis and any withdrawal or limitations of medical treatment. Results In the recent epoch, there were 88 deaths out of 2084 admissions (4.2%), a reduction from the previous epochs (132/1362 (9.7%) and 111/1776 (6.2%), respectively, for epochs 1 and 2). More than 90% of infants died after withdrawal of life-sustaining treatment, an increase from the previous two epochs (75%). There was a reduction in deaths from chromosomal abnormalities, complications related to prematurity and severe birth asphyxia. Conclusions There continue to be changes in both the diagnoses leading to death and approaches to withdrawal of treatment in the NICU. These may reflect ongoing changes in both prenatal and post-natal diagnostics as well as changing attitudes towards palliative care within the medical and wider community.
Barry A; Prentice T; Wilkinson D
Journal of Paediatrics and Child Health
2022
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<a href="http://doi.org/https://doi.org/10.1111/jpc.16296" target="_blank" rel="noreferrer noopener">https://doi.org/10.1111/jpc.16296</a>
The Case for Advance Care Planning in the NICU
Case Planning; NICU; Decissional-Support; Advanced Care Planning; ACP; Newborn Period
Many NICUs have reached an inflection point where infant deaths following limitation of life-sustaining treatments outnumber those following unsuccessful resuscitations, and many infants who survive continue to require intensive supports. Families of such infants with serious illness may benefit from a standardized, process-oriented approach in decisional-support. Advance care planning (ACP), or communication that supports patients, or their surrogate decision-makers, in sharing values, goals, and preferences for future medical care, is recognized as a valuable strategy in supporting adults with serious and chronic illness. Although the role of ACP in older children and adolescents is evolving, its utility has not been systematically explored in the perinatal context. This article builds a case for formalizing a role for ACP in the NICU by defining ACP and appraising recent outcomes research, reviewing the current state of parental needs for decisional support and serious illness in the NICU, and describing how ACP may address current limitations in primary and specialty pediatric palliative care and challenges for decision-making in the newborn period.
Lin M; Sayeed S; DeCourcey DD; Wolfe J; Cummings C
Pediatrics
2022
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/10.1542/peds.2022-057824" target="_blank" rel="noreferrer noopener">10.1542/peds.2022-057824</a>
Bereaved Parents' Perceptions of Infant Suffering in the NICU
Neonatal Intensive Care Units; Newborn Infant; Infant; intensive care; Mothers; Neonatal; NICU; Parents; Perception; suffering
CONTEXT: It is challenging to provide supportive intensive care to infants in the neonatal intensive care unit (NICU), giving them every chance for survival, while also trying to minimize suffering for both the infant and parents. Parents who believe their infant is suffering may alter treatment goals based on their perceptions; however, it is unknown how parents come to believe that their infant may be suffering. OBJECTIVES: To examine bereaved parents' perceptions of infant suffering in the NICU. METHODS: Parents completed a qualitative interview exploring their perceptions of the level of suffering that their infant experienced at the end of life. Parents whose infant died in a large Midwestern Level IV regional referral NICU from July 2009 to July 2014 were invited to participate. Thirty mothers and 16 fathers from 31 families (31 of 249) participated in telephone interviews between three months and five years after their infant's death. RESULTS: Four themes emerged from the qualitative analysis: 1) the presence/absence of suffering, 2) indicators of suffering, 3) temporal components of suffering (trajectory), and 4) influence of perceived suffering on parents, infants, and clinical decision making. CONCLUSION: Parents used signs exhibited by infants, as well as information they received from the health care team to form their perceptions of suffering. Perceived suffering followed different trajectories and influenced the decisions that parents made for their infant. Soliciting parent perspectives may lead to improvements in the understanding of infant well-being, particularly suffering, as well as how parents rely on these perceptions to make treatment decisions for their infant.
Fortney CA; Baughcum AE; Moscato EL; Winning AM; Keim MC; Gerhardt CA
Journal of Pain and Symptom Management
2019
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<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.007</a>
Parents' Descriptions of Neonatal Palliation as a Treatment Option Prior to Periviable Delivery
palliative care; neonatal intensive care; perinatal care; NICU; decision making; premature birth
During periviable deliveries, parents are confronted with overwhelming and challenging decisions. This study aimed to qualitatively explore the language that pregnant women and important others utilize when discussing palliation, or "comfort care," as a treatment option in the context of periviability. We prospectively recruited women admitted for a threatened periviable delivery (22-25 weeks) at 2 hospitals between September 2016 and January 2018. Using a semistructured interview guide, we investigated participants' perceptions of neonatal treatment options, asking items such as "How was the choice of resuscitation presented to you?" and "What were the options presented?" Conventional content analysis was used and matrices were created to facilitate using a within- and across-case approach to identify and describe patterns. Thirty women and 16 important others were recruited in total. Participants' descriptions of treatment options included resuscitating at birth or not resuscitating. Participants further described the option to not resuscitate as "comfort care," "implicit" comfort care, "doing nothing," and "withdrawal of care." This study revealed that many parents facing periviable delivery may lack an understanding of comfort care as a neonatal treatment option, highlighting the need to improve counseling efforts in order to maximize parents' informed decision-making.
Jager S; Kavanaugh K; Hoffman S; Laitano T; Jeffries E; Tucker Edmonds B
The Journal of perinatal & neonatal nursing
2020
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<a href="http://doi.org/10.1097/JPN.0000000000000483" target="_blank" rel="noreferrer noopener">10.1097/JPN.0000000000000483</a>
Gaps in Palliative Care Education among Neonatology Fellowship Trainees
Nicu; residency; medical education; curriculum; training program
Background: To provide proper care for infants at risk for death, neonatologists need expertise in many areas of palliative care. Although neonatology training programs have implemented a wide variety of palliative care educational programs, the impact of these programs on trainees' skills and effective communication regarding end-of-life issues remains unclear. Objective: To determine whether neonatology fellowship programs are providing formal palliative care education and assess whether this education is effective at increasing fellows' self-reported comfort with these important skills. Methods: An anonymous survey was sent to program directors (PDs) and fellows of ACGME accredited neonatology fellowship programs in the United States. Using a 5-point Likert scale, participants were asked about the palliative care education they received, and their comfort level with several key aspects of palliative care. Results: Twenty-four (26%) PDs and 66 (33%) fellows completed the survey. Fourteen PDs (58%) reported including palliative care education in their formal fellowship curriculum, whereas only 20 (30%) responding fellows reported receiving palliative care education. Of the responding fellows, most (80%) reported being uncomfortable or only somewhat comfortable with all assessed areas of palliative care. Fellows who received formal education were more comfortable than those without it in leading goals of care conversations (p = 0.001), breaking bad news (p = 0.048), discussing change in code status (p = 0.029), and grief and bereavement (p = 0.031). Conclusions: Most fellows report being uncomfortable or only somewhat comfortable with essential areas of palliative care. Formal palliative care education improves fellows' self-reported comfort with important aspects of end-of-life care. To promote a well-rounded neonatology fellowship curriculum, inclusion of formal palliative care education is recommended.
Wraight CL; Eickhoff JC; McAdams RM
Palliative Medicine Reports
2021
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<a href="http://doi.org/10.1089/pmr.2021.0011" target="_blank" rel="noreferrer noopener">10.1089/pmr.2021.0011</a>
Trends in length of stay for Neonatal Intensive Care Unit patients who die before hospital discharge
death; ethics; neonate; NICU; palliative care
OBJECTIVES: The objectives of this study were to establish days between birth and death for neonates over a 14-year period, determine if days between birth and death have changed over time across gestational age cohorts, and identify diagnoses which may put infants at high risk of prolonged hospitalization leading to death. STUDY DESIGN: This was a single-site, retrospective chart review of inborn infants who died prior to hospital discharge. RESULTS: Two hundred and thirty-nine patients born between 1/1/2006 and 12/31/2020 met inclusion criteria. Days until death ranged from 0 to 300 with a median of 6 days (interquartile range = 23). Median days until death increased over time, with a statistically significant increase between epoch 1 and epoch 2 (p = 0.016) but not between epoch 2 and epoch 3 (p = 0.618). Extremely premature infants died earlier than more mature infants (p < 0.001). In addition, infants with complex congenital heart disease or a gastrointestinal (GI) catastrophe died later (p < 0.001 and p < 0.001, respectively) than newborns without cardiac or GI issues. CONCLUSIONS: Our findings demonstrate an increase in time to death for newborns who did not survive to hospital discharge over a 14-year period. This trend suggests that the dynamics informing Meadows' assertion that "doomed infants die early" may be shifting, with some seriously ill infants who die before hospital discharge surviving longer than previously described. More research is needed to understand how best to care for babies who will not survive to discharge and to explore when supports such as palliative care consultation may be beneficial. KEY POINTS: As per W. Meadow, "Doomed infants die early" · Pre-death length of stay varies with diagnosis.. · Some seriously ill infants who die before hospital discharge are no longer dying early.. · These infants and families may need supports..
Guttmann K; Puoplo N; Richter F; Weintraub AS
American Journal of Perinatology
2021
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<a href="http://doi.org/10.1055/a-1712-5313" target="_blank" rel="noreferrer noopener">10.1055/a-1712-5313</a>
Parent Perceptions of Infant Symptoms and Suffering and Associations With Distress Among Bereaved Parents in the NICU
grief; palliative care; end of life; NICU; parents; bereavement
CONTEXT: Healthcare providers and parents face many challenges caring for infants at the end of life (EOL). Symptom assessment and management in critically ill infants can be especially difficult. However, the impact of the infant's EOL experience on bereaved parents is largely unknown. OBJECTIVE: Explore associations between parental perceptions of infant symptoms and suffering at EOL in the neonatal intensive care unit (NICU) and parent adjustment following the death. METHODS: Retrospective, cross-sectional pilot study involving parents of infants who died within the previous five years in a large, Midwestern, level IV NICU. Parents were recruited through mailed invitations, and 40 mothers and 27 fathers participated from 40 families. Parents retrospectively reported on infant symptom burden and suffering during the last week of life and the Impact of Events Scale-Revised (IES-R), and Prolonged Grief-13 (PG-13). Hierarchical regressions examined demographic/medical factors and parent perceptions at EOL in relation to post-traumatic stress symptoms (PTSS) and prolonged grief (PG). RESULTS: Clinical levels of PTSS (Mothers = 18%; Fathers = 11%) and PG (Mothers and Fathers = 3%) were low. Maternal perception of higher symptom burden was associated with greater PTSS, R2 = 0.46, P= 0.001, and PG, R2 = 0.47, P < 0.01. Paternal perception of greater infant suffering was associated with greater PTSS, R2 = 0.48, P= 0.001, and PG, R2 = .38, P < 0.01. CONCLUSION: Perceptions of symptoms and suffering were associated differently with mother and father adjustment after bereavement. While not necessarily causal, better symptom management at EOL could minimize distress for both infants and their parents.
Clark OE; Fortney CA; Dunnells ZDO; Gerhardt CA; Baughcum AE
Journal of Pain and Symptom Management
2021
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/10.1016/j.jpainsymman.2021.02.015" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.02.015</a>
Metasynthesis of Factors That Influence Parents' Participation in Pain Management for Their Infants in the NICU
Parents/psychology; Newborn Infant; Professional-Patient Relations; Patient Satisfaction; Qualitative Research; Nicu; Quality of Health Care/standards; qualitative research; pain management; Neonatal Intensive Care Unit Standards; Patient Participation/methods/psychology; parents’ participation; Pain Management/methods/standards/trends; Parenting/psychology/trends
OBJECTIVE: To metasynthesize the results of qualitative studies on the factors that affect parents' participation in pain management for their infants during procedures in the NICU. DATA SOURCES: We conducted a literature search for articles published from 1976 through November 2019 using MeSH terminology in the following databases: MEDLINE, CINAHL Plus, EMBASE, PubMed, PsycINFO, Cochrane, Scopus, and Web of Science. All qualitative studies in which researchers explored parental participation and education in the NICU were included. STUDY SELECTION: A total of 29,937 articles were returned. Once we removed duplicates and limited results to qualitative studies, 48 articles remained. We excluded 41 articles because the studies reported were not conducted in NICUs, involved neonatal palliative care, or were review or opinion articles. We included seven articles for review. DATA EXTRACTION: Two authors reviewed all articles using the Critical Appraisal Skills Programme tool to assess study quality and independently scored each study. We reviewed and extracted authors, publication date, type of study, sample size, results, themes, and quotes and included these data elements in the analysis. DATA SYNTHESIS: We used a thematic synthesis technique to review the qualitative data, entered codes into NVivo software, and compared codes to create descriptive themes. From these descriptive themes, we generated four analytic themes: Learning to Parent a Hospitalized Infant, Stress and Anxiety, Health Care Providers as Gatekeepers, and NICU Environment. CONCLUSION: The four themes identified in this qualitative metasynthesis represent the factors that affect parents' abilities to participate in their infants' pain management. Further research is recommended to develop interventions that address these factors to optimize parents' participation in pain management for their infants during procedures in the NICU.
McNair C; Chinian N; Shah V; McAllister M; Franck LS; Stevens B; Burry L; Taddio A
Journal of Obstetric, Gynecologic, & Neonatal Nursing
2020
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<a href="http://doi.org/10.1016/j.jogn.2020.02.007" target="_blank" rel="noreferrer noopener">10.1016/j.jogn.2020.02.007</a>
Neonatal Nurses' Perceptions of Palliative Care in the Neonatal Intensive Care Unit
End-of-life care; NICU; neonatal palliative care; comfort care; perceptions; Neonatal Nurses
Purpose: Neonatal palliative care is widely endorsed as an essential aspect of neonatal intensive care unit (NICU) practice, yet inconsistencies in its use continue to exist. We examined neonatal nurses' perceptions of barriers and facilitators to palliative care in their NICU setting.Study Design and Methods: A cross-sectional design using the Neonatal Palliative Care Attitude Scale (NiPCAS™©) was administered using an online survey distributed to neonatal nurses through the Association of Women's Health, Obstetric and Neonatal Nurses (AWHONN) and National Association of Neonatal Nurses (NANN). Parametric statistical analyses were conducted to explore relationships between unit policy and neonatal palliative care (NPC) education, and the nurses' perceptions.Results: Ninety-nine of 1,800 AWHONN members who identified as NICU nurses completed the survey, representing a response rate of 5.5% and 101 of 4,000 NANN members who subscribe to the MYNANN message boards completed the survey, reflecting a 2.5% response rate. N = 200 surveys were completed with minimal data missing, resulting in a final sample of 200. Exploratory factor analysis yielded these subconstructs: Unit Culture, Resources, and Perceived Inappropriate Care. Barriers identified were Perceived Inappropriate Care and Societal Understanding of NPC. A positive correlation was noted for NiPCAS™© scores and unit culture support (r(185) = .66, n = 187, p < .01), unit NPC policy (r(184) = .446, n = 186, p < .01), and NPC education (r(185) = .373, n = 187, p < .01).Clinical Implications: Nurses who work in a NICU with an NPC policy and who have received palliative care education demonstrated more favorable attitudes toward NPC. Policy and educational programs are important strategies to promote high-quality care for high-risk infants and their families.
Chin SDN; Paraszczuk AM; Eckardt P; Bressler T
MCN: The American Journal of Maternal/Child Nursing
2021
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/10.1097/nmc.0000000000000738" target="_blank" rel="noreferrer noopener">10.1097/nmc.0000000000000738</a>
Measuring communication quality in the Neonatal Intensive Care Unit
communication; communication quality; neonatal intensive care unit; neonatology; nicu; pediatric palliative care
BACKGROUND: High quality communication between providers and parents of seriously ill neonatal patients is vital and yet poorly understood. Feudtner summarized five challenges and seven priorities to the study and advancement of pediatric palliative care. Improvement of communication is a priority, while lack of specification and measurement of outcomes relevant to the pediatric population remains a challenge. Specifically, measurement of communication quality in pediatrics, and especially neonatology, is problematic. METHODS: We conducted a focused review of this topic which we hope will serve to support further research. We reviewed the current literature in Pubmed and searched the Palliative Care Research Cooperative (PCRC) instrument library. RESULTS: We found five validated instruments which met our criteria, relied on patient or surrogate report, and were developed to measure quality of communication and/or satisfaction with communication with adult patients or their surrogates. Our Pubmed search yielded 249 unique results, only two of which met our inclusion criteria. CONCLUSION: We conclude that development and exhaustive testing of a validated, comprehensive measure of communication quality for the neonatal population is needed. Without such a measure, it will be difficult to advance the field and achieve high quality prognostic communication for the parents of seriously ill babies. IMPACT: Measurement of communication quality in pediatrics, and especially neonatology, is problematic, understudied, and yet critical to the advancement of the field. There has not been an overview of existing measures of communication quality in the NICU published, nor has there been a comprehensive discussion of this important topic. Our paper provides such an overview and initiates such a discussion. We present a narrative review of existing measures of communication quality in the NICU in order to highlight the need for further study.
Guttmann KF; Orfali K; Kelley AS
Pediatric Research
2021
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/s41390-021-01522-6" target="_blank" rel="noreferrer noopener">10.1038/s41390-021-01522-6</a>
My child's legacy: A mixed methods study of bereaved parents and providers' opinions about collaboration with NICU teams in quality improvement initiatives
bereavement; legacy-making; mixed-methods study; neonatal intensive care unit; NICU; parental perspectives; provider perspectives
Objective Although stakeholders' participation in healthcare is increasingly recommended, bereaved parents are often excluded for perceived potential risks to them. The objective of this study is to describe the ongoing involvement and the perspectives of bereaved parents engaged in different types of activities in Neonatal Intensive Care Units and providers who work with them. Design/methods Mixed methods convergent analysis. Setting Canadian paediatric tertiary care university hospital. Participants All bereaved members of the resource parents group (n=8) and most providers who work with them (n=16) answered a satisfaction/needs questionnaires. Results Since 2011, eight bereaved parents were involved in a large number of activities mostly related to palliative care (research, education or clinical care initiatives). Three engaged in peer-to-peer support activities while the others preferred activities outside of clinical units and/or without direct interactions with other families. All of them reported that their participation had positive impacts, but two parents also reported a reactivation of traumatic experiences during a medical simulation activity. All participants expressed a desire for further collaboration. Motivation to contribute gravitated around two central themes: helping others and helping themselves. Many wanted to give back, help other families, improve the system and meet with providers who had cared for their child. All stated that this kind of involvement empowered them and gave meaning to their experiences. Providers and researchers all reported positive experiences, mainly due to the unique perspectives of bereaved parents who took part in their projects. Conclusion(s) With careful recruitment and supervision, some bereaved parents can become resource parents involved in different types of activities. It is important to understand the positive impacts this type of engagement can have on their healing process and to control the risks related to their participation. Research is needed to develop pertinent tools and measures to evaluate the outcomes and impacts of their participation. Copyright ©
Bourque C J; Dahan S; Mantha G; Reichherzer M; Janvier A
BMJ Open
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/10.1136/bmjopen-2019-034817" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2019-034817</a>
Neonatal palliative care: perception differences between providers
communication; healthcare providers; neonatal intensive care unit; neonatal palliative care; NICU; palliative care; pediatrics; perception differences
Objective: The purpose of this study was to describe differences and identify education gaps in the perception of palliative care (PC) between neonatal care providers in a Level IV Neonatal intensive care unit. Study design: This is a descriptive survey mixed methods study. Email surveys were sent to social workers, pharmacists, dieticians, nurses, respiratory therapists, fellows and faculty in November of 2018. Total number of respondents was 181 with a response rate of 56%. Result(s): Statistically significant differences between faculty and non-faculty were found in regards to benefits of early PC consults, need for automatic consults for certain diagnosis and the frequency of PC consults. Conclusion(s): The perception of PC differs greatly between faculty and non-faculty. Educational initiatives surrounding PC and communication along with instituting automatic consults for certain diagnosis could help bridge this difference in perception and educational gap. Copyright © 2020, The Author(s), under exclusive licence to Springer Nature America, Inc.
Niehaus J Z; Palmer M M; Slaven J; Hatton A; Scanlon C; Hill A B
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/s41372-020-0714-1" target="_blank" rel="noreferrer noopener">10.1038/s41372-020-0714-1</a>
Perceptions of neonatal palliative care: Similarities and differences between medical and nursing staff in a level IV neonatal intensive care unit
attitudes toward palliative care; barriers to palliative care; facilitators of palliative care; neonatal intensive care unit; neonatal palliative care; NICU; perceptions
Background: A significant number of newborns are affected by life-limiting or life-threatening conditions. Despite this prevalence, there are inconsistencies in attitudes toward, and delivery of, neonatal palliative care. Implementing neonatal palliative care practice requires a multidisciplinary, collaborative effort. Objective(s): To examine institutional and individual barriers to and facilitators of neonatal palliative care from both medical and nursing perspectives. Design/Setting/Subjects: A prospective cross-sectional study design was used to collect data using the Neonatal Palliative Care Attitude Scale (NiPCAS) survey from medical providers and nurses in a 64-bed level IV neonatal intensive care unit in the United States. The response rate was 67%. Measurements: The NiPCAS survey included 26 attitudinal questions on a Likert scale. The instrument included three subscales: organization, resources, and clinician, in addition to other questions. Result(s): Six facilitators to neonatal palliative care were identified: (1) support of palliative care by the health care team, (2) support of palliative care by medical and nursing practice, (3) agreement that palliative care is as important as curative care, (4) parental involvement in decision making, (5) recognition of the importance of palliative care education, and (6) prioritizing pain relief. Three barriers to neonatal palliative care were highlighted: (1) a physical environment that is not conducive to providing palliative care, (2) technological obligations and parental demands, and (3) the societal belief that babies should not die. In addition, there were differences between medical and nursing staffs' attitudes on several topics. Conclusion(s): Several facilitators and barriers of neonatal palliative care were identified. There were similarities and differences in perceptions of neonatal palliative care between medical and nursing staff. Future work should be done to strengthen facilitators and to mitigate barriers. © Copyright 2020, Mary Ann Liebert, Inc., publishers 2020.
Kyc S J; Bruno C J; Shabanova V; Montgomery A M
Journal of Palliative Medicine
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/10.1089/jpm.2019.0523" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0523</a>
Parents' Descriptions of Neonatal Palliation as a Treatment Option Prior to Periviable Delivery
decision making; neonatal intensive care; NICU; palliative care; perinatal care; premature birth
During periviable deliveries, parents are confronted with overwhelming and challenging decisions. This study aimed to qualitatively explore the language that pregnant women and important others utilize when discussing palliation, or "comfort care," as a treatment option in the context of periviability. We prospectively recruited women admitted for a threatened periviable delivery (22-25 weeks) at 2 hospitals between September 2016 and January 2018. Using a semistructured interview guide, we investigated participants' perceptions of neonatal treatment options, asking items such as "How was the choice of resuscitation presented to you?" and "What were the options presented?" Conventional content analysis was used and matrices were created to facilitate using a within- and across-case approach to identify and describe patterns. Thirty women and 16 important others were recruited in total. Participants' descriptions of treatment options included resuscitating at birth or not resuscitating. Participants further described the option to not resuscitate as "comfort care," "implicit" comfort care, "doing nothing," and "withdrawal of care." This study revealed that many parents facing periviable delivery may lack an understanding of comfort care as a neonatal treatment option, highlighting the need to improve counseling efforts in order to maximize parents' informed decision-making.
Jager S; Kavanaugh K; Hoffman S; Laitano T; Jeffries E; Tucker Edmonds B
The Journal of perinatal & neonatal nursing
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/10.1097/JPN.0000000000000483" target="_blank" rel="noreferrer noopener">10.1097/JPN.0000000000000483</a>
Implementation of a Perinatal Hospice Program
antenatal hospice; life-limiting; neonatal; neonatal intensive care unit; NICU; perinatal hospice; perinatal palliative care
BACKGROUND: In 2017, the Nebraska Unicameral passed legislative bill 506, which required physicians to inform patients carrying fetuses diagnosed with a life-limiting anomaly of the option to enroll in a comprehensive perinatal hospice program. The bill also required the Department of Health & Human Services to provide information about statewide hospice programs. Families enrolled in hospice programs are better prepared for the birth and death of their child. This large academic medical center was listed on the registry but did not have a formal perinatal hospice program. PURPOSE: Implementation of a comprehensive perinatal hospice program. METHOD(S): The program was designed and implemented, beginning with the formation of an interdisciplinary team. Guidelines were developed for program referral, care conferences, team communication, and family follow-up. The team was educated. Electronic record documentation and order set were implemented. A data collection process was developed to track referrals and critical data points. RESULT(S): The perinatal hospice program has been accepting referrals but has not had any qualifying referrals. IMPLICATIONS FOR PRACTICE: The development of an evidence-based guideline for referral that can improve referral consistency. While trisomy 13 and 18 diagnosis was historically considered life-limiting, these families now have the option of full intervention and transfer for specialists. IMPLICATIONS FOR RESEARCH: Future research will include collecting data from patients who could have benefited from hospice, including infants who were born 20 to 22 weeks, or for maternal reasons. Future research will evaluate the experience after bereavement, the hospice team's experience, and the effectiveness of the referral process.
Falke M; Rubarth L B
Advances in Neonatal Care
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/10.1097/ANC.0000000000000755" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000000755</a>
Nurses' roles and challenges in providing end-of-life care in neonatal intensive care units in South Korea
End-of-life care; Neonates; Nicu; Nursing role; South Korea
BACKGROUND: Neonatal Intensive Care Unit (NICU) nurses in Korea often experience challenges in providing care for dying infants and their families. However, there is limited understanding about what contributes to the challenges related to end-of-life care. PURPOSE: To describe NICU nurses' perceived roles and challenges faced while providing end-of-life care in South Korea. METHODS: A qualitative descriptive study was conducted with 20 NICU nurses in South Korea using semi-structured interviews. Participants were recruited from two NICUs in Seoul, where infant mortality is the highest in South Korea. Transcribed interviews were coded by two research personnel, and subsequently, a developed coding book was translated by three research personnel. The codes developed were categorized and peer-reviewed to develop themes using conventional content analysis. RESULTS: Nurses' roles during end-of-life care were grouped into four categories: providing information and support, enhancing attachment between the parents and infants, providing direct care to the infant, and completing documentation. Nurses' perceived challenges during end-of-life care included providing end-of-life care without adequate experience and knowledge, environmental constraints on end-of-life care, and conflicted situations during end-of-life care. CONCLUSION: Although the nurses provided the best care they could, their end-of-life care practice was hindered for various reasons. To enhance NICU nurses' ability to provide and make them more capable of providing high quality EOL care, hospitals need to support nurse education and improve staffing level, and create in NICUs an environment that is favorable for providing EOL care.
Kim S; Savage T A; Song M K; Vincent C; Park C G; Ferrans C E; Kavanaugh K
Applied Nursing Research
2019
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<a href="http://doi.org/10.1016/j.apnr.2019.151204" target="_blank" rel="noreferrer noopener">10.1016/j.apnr.2019.151204</a>
Decision-making at the limit of viability: The Austrian neonatal choice context
article; human; palliative therapy; controlled study; shared decision making; systematic review; nervous system malformation; newborn; statistics; Austria; Choice context; Communication strategies; Decision-making; ethicist; framing bias; head; high income country; Limit of viability; neonatologist; neonatology; Neonatology; nicu; pregnancy; prematurity; semi structured interview
Background: We aimed to explore the shared decision-making context at the limit of viability (weeks 22-25 of gestation) through analyzing neonatologist's communication strategies with parents and their possible impact on survival and neurodevelopmental impairment (NDI) outcomes. Method(s): A mixed methods approach was applied where a systematic literature search and in-depth semi-structured interviews with five heads of neonatology departments and one clinical ethicist from the Austrian context were integrated into a literature review. The aim was to identify decision practice models and the choice context specific to Austria. Result(s): Professional biases, parental understanding, and the process of information giving were identified as aspects possibly influencing survival and NDI outcomes. Institutions create self-fulfilling prophecies by recommending intensive/palliative care based upon their institutional statistics, yet those vary considerably among high-income countries. Labelling an extremely preterm (EP) infant by the gestational week was shown to skew the estimates for survival while the process of information giving was shown to be subject to framing effect and other cognitive biases. Conclusion(s): Communication strategies of choice options to parents may have an impact on the way parents decide and hence also on the outcomes of EP infants. Copyright � 2019 The Author(s).
Stanak M; Hawlik K
BMC Pediatrics
2019
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<a href="http://doi.org/10.1186/s12887-019-1569-5" target="_blank" rel="noreferrer noopener">10.1186/s12887-019-1569-5</a>
Associated Factors of Psychological Distress among Japanese NICU Nurses in Supporting Bereaved Families Who Have Lost Children
Adaptation Psychological; Male; Infant Newborn; Bereavement; Surveys and Questionnaires; Humans; Adult; Stress Psychological; Female; psychological distress; Intensive Care Neonatal; nurses; bereavement care; Intensive Care Units Neonatal; Nicu; children's deaths; Hospice Care/psychology; Neonatal Nursing/education; Nurses Neonatal/education/psychology; Pediatricians/psychology
PURPOSE: This study aimed (1) to examine the current status of psychological distress experienced by neonatal intensive care unit (NICU) nurses in supporting bereaved families, (2) to identify the factors associated with psychological distress, and (3) to understand the professional characteristics of nurses experiencing high psychological distress by comparing the study results with those of pediatricians. METHODS: We sent questionnaires to 64 NICUs. The psychological distress of nurses was classified into two groups based on the frequency of psychological distress experienced and analyzed using the chi2 test and Fisher's exact test. A multiple logistic regression analysis was used to investigate the factors related to psychological distress. RESULTS: Of the 384 nurse respondents, 190 (49.5%) reported having supported bereaved families, 169 of who were included in the analysis. A total of 123 nurses (72.8%) reported high levels of psychological distress. Our study revealed that the use of coping methods is associated with high psychological distress. The comparison with pediatricians revealed that nurses were significantly more likely to be female and had fewer years of working experience. Nurses were also significantly more likely to use coping methods and to experience high psychological distress. CONCLUSION: Clarifying the coping methods for psychological distress in supporting bereaved families may be necessary, and nurses need to identify appropriate coping methods. In nursing education, information on psychological distress related to children's deaths and bereavement care should be conveyed from the early stage and nurses must obtain preliminary knowledge. The creation of a bereavement follow-up system is recommended.
Kitao M; Setou N; Yamamoto A; Takada S
Kobe Journal of Medical Sciences
2018
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Spiritual Challenges Experienced by Nurses in Neonatal End of Life: A Qualitative Study
Nurse; palliative care; Pediatrics; Qualitative Research; Death; NICU; barriers; infant; families; birth; intensive-care-unit; interventions; iran; of-life; Neonate
Background The literature reviews show that taking care of dying newborns for a nurse is associated with stress and anxiety, and nurses will be faced with many challenges, the present study aimed to explain the spiritual challenges experienced by nurses in neonatal end of life in the NICU. The present study was conducted with a qualitative method and "purposive" sampling. The study environment was NICU in the hospitals of Zahedan, Iran. Semi-structured interviews used for interview and data collection. A number of 24 participants with inclusion criteria were interviewed. Qualitative content analysis method was used with the conventional approach and inductive method with Graneheim and Lundman approach. Data analysis explored were categorized in three main themes: spiritual challenge of neonatal care with two-categories (palliative care, and care with love and affection); psychological / spiritual support challenges of family with two categories (spiritual support of family, psychological support of family), and nurses' spiritual distress with one category (nurse's trauma in neonatal care). In this study three themes were obtained: 1- Spiritual challenge of neonatal care with two-categories (palliative care, and care with love and affection); 2- Psychological / spiritual support challenges of family with two categories (spiritual support of family, psychological support of family), and 3- The nurses' spiritual distress with one category (nurse's trauma in neonatal care).
Ghaljaei F; Goli H; Rezaie N; Sadeghi N
International Journal of Pediatrics-Mashhad
2018
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<a href="http://doi.org/10.22038/ijp.2018.28630.2511" target="_blank" rel="noreferrer noopener">10.22038/ijp.2018.28630.2511</a>
Bereaved mothers' and fathers' perceptions of a legacy intervention for parents of infants in the NICU
bereavement; caregivers; infant death; legacy-making; Nicu; Pediatric palliative care
BACKGROUND: Legacy-making, actions or behaviors aimed at being remembered, may be one strategy to enhance coping and improve grief outcomes for bereaved parents and siblings. While legacy interventions have been developed and tested in pediatric and adult populations, legacy activities specific to bereaved parents in the neonatal intensive care unit remain unexplored. This study explored bereaved parents' perceptions of a digital storytelling legacy-making intervention for parents after the death of an infant. METHODS: Six bereaved mothers and fathers participated in a focus group interview three to 12 months after the death of an infant in the NICU. A semi-structured interview guide with open-ended questions was used to obtain parent self-reports. Qualitative content analysis identified emerging themes. RESULTS: Four major themes emerged regarding participants' perceptions of a legacy intervention: (a) parents' willingness to participate in a legacy intervention, (b) parents' suggestions for a feasible intervention, (c) parents' suggestions for an acceptable intervention, and (d) parents' perceived benefits of legacy-making. CONCLUSIONS: Participants reported that a legacy-making intervention via digital storytelling would be feasible, acceptable, and beneficial for NICU parents. Study results support the need and desire for legacy-making services to be developed and offered in the NICU.
Akard TF; Duffy M; Hord A; Randall A; Sanders A; Adelstein K; Anani UE; Gilmer M J
Journal of Neonatal Perinatal Medicine
2018
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<a href="http://doi.org/10.3233/npm-181732" target="_blank" rel="noreferrer noopener">10.3233/npm-181732</a>
Worth a Try? Describing the Experiences of Families during the Course of Care in the Neonatal Intensive Care Unit When the Prognosis is Poor
prognosis; Infant; Intensive Care Units; Medical Futility; Neonatal; Newborn; Parents; Prognosis; ethics; moral distress; prematurity; gray zone; Nicu; parent experiences; poor prognosis
OBJECTIVE: To determine how parents of infants in the neonatal intensive care unit with a poor or uncertain prognosis view their experience, and whether they view their choices as "worth it," regardless of outcome. STUDY DESIGN: Parents of eligible neonates at 2 institutions underwent audiotaped, semistructured interviews while their infants were still in the hospital and then again 6 months to 1 year after discharge or death. Interviews were transcribed and data were analyzed using thematic analysis. Two authors independently reviewed and coded each interview and discrepancies were resolved by consensus. RESULTS: Twenty-six families were interviewed in the initial group and 17 families were interviewed in the follow-up group. The most common themes identified included realism about death (24 families), appreciation for the infant's care team (23 families), and optimism and hope (22 families). Overall themes were very similar across both centers, and among parents of infants who died and those who survived. Themes of regret, futility, distrust of care team, and infant pain were brought up infrequently or not at all. CONCLUSIONS: No family believed that the care being provided to their infant was futile; rather, parents were grateful for the care provided to their infant, regardless of outcome. Even in the case of a poor prognosis or the death of an infant, families in our study viewed their infant's stay in the neonatal intensive care unit favorably.
Arnolds M; Xu L; Hughes P; McCoy J; Meadow W
Journal of Pediatrics
2018
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<a href="http://doi.org/10.1016/j.jpeds.2017.12.050" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2017.12.050</a>
Communication with parents concerning withholding or withdrawing of life-sustaining interventions in neonatology
Emotions; Communication; Neonatology; empathy; cardiopulmonary resuscitation; gestational age; NICU; bronchopulmonary dysplasia; CPR; end of life decisions; Extreme prematurity; extremely low-gestational-age infants; Family Centered Care; Life-sustaining interventions; necrotizing enterocolitis; Personalized medicine; Withhold and withdraw intensive care
The nature and content of the conversations between the healthcare team and the parents concerning withholding or withdrawing of life-sustaining interventions for neonates vary greatly. These depend upon the status of the infant; for some neonates, death may be imminent, while other infants may be relatively stable, yet with a potential risk for surviving with severe disability. Healthcare providers also need to communicate with prospective parents before the birth of premature infants or neonates with uncertain outcomes. Many authors recommend that parents of fragile neonates receive detailed information about the potential outcomes of their children and the choices they have provided in an unbiased and empathetic manner. However, the exact manner this is to be achieved in clinical practice remains unclear. Parents and healthcare providers may have different values regarding the provision of life-sustaining interventions. However, parents base their decisions on many factors, not just probabilities. The role of emotions, regret, hope, quality of life, resilience, and relationships is rarely discussed. End-of-life discussions with parents should be individualized and personalized. This article suggests ways to personalize these conversations. The mnemonic "SOBPIE" may help providers have fruitful discussions: (1) What is the Situation? Is the baby imminently dying? Should withholding or withdrawing life-sustaining interventions be considered? (2) Opinions and options: personal biases of healthcare professionals and alternatives for patients. (3) Basic human interactions. (4) Parents: their story, their concerns, their needs, and their goals. (5) Information: meeting parental informational needs and providing balanced information. (6) Emotions: relational aspects of decision making which include the following: emotions, social supports, coping with uncertainty, adaptation, and resilience. In this paper, we consider some aspects of this complex process.
2014-02
Janvier A; Barrington K; Farlow B
Seminars In Perinatology
2014
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Journal Article
<a href="http://doi.org/10.1053/j.semperi.2013.07.007" target="_blank" rel="noreferrer">10.1053/j.semperi.2013.07.007</a>
Parent Health and Functioning 13 Months After Infant or Child NICU/PICU Death
NICU; infant death; child death; PICU; parent chronic conditions; parent mental health
BACKGROUND: After a child's death, parents may experience depression, posttraumatic stress disorder (PTSD), and increased risk for cancers, diabetes, psychiatric hospitalization, and suicide. Racial/ethnic differences are unknown. This longitudinal study investigated health and functioning of Hispanic, black, and white parents through 13 months after NICU/PICU death. METHODS: Parents (176 mothers, 73 fathers) of 188 deceased infants/children were recruited from 4 NICUs, 4 PICUs, and state death certificates 2 to 3 weeks after death. Deaths occurred after limiting treatment/withdrawing life support (57%), unsuccessful resuscitation (32%), or brain death (11%). Data on parent physical health (hospitalizations, chronic illness), mental health (depression, PTSD, alcohol use), and functioning (partner status, employment) were collected in the home at 1, 3, 6, and 13 months after death. RESULTS: Mean age for mothers was 32 ± 8, fathers 37 ± 9; 79% were Hispanic or black. Thirteen months after infant/child death, 72% of parents remained partnered, 2 mothers had newly diagnosed cancer, alcohol consumption was below problem drinking levels, parents had 98 hospitalizations (29% stress related) and 132 newly diagnosed chronic health conditions, 35% of mothers and 24% of fathers had clinical depression, and 35% of mothers and 30% of fathers had clinical PTSD. At 6 months after infant/child death, 1 mother attempted suicide. Week 1 after infant/child death, 9% of mothers and 32% of fathers returned to employment; 7 parents took no time off. More Hispanic and black mothers than white mothers had moderate/severe depression at 6 months after infant/child death and PTSD at every time point. CONCLUSIONS: Parents, especially minority mothers, have negative physical and mental health outcomes during the first year after NICU/PICU death.
2013-11
Youngblut JM; Brooten D; Cantwell GP; Del Moral T; Totapally Balagangadhar
Pediatrics
2013
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Journal Article
<a href="http://doi.org/10.1542/peds.2013-1194" target="_blank" rel="noreferrer">10.1542/peds.2013-1194</a>
Whom are we comforting? An analysis of comfort medications delivered to dying neonates
Humans; infant; Intensive Care Units; Attitude of Health Personnel; Medical Futility; Prognosis; Neonatal; Stress; Newborn; retrospective studies; ICU Decision Making; Palliative Care/methods; Pain/drug therapy; Physician Assisted Dying PAD; Analgesics/administration & dosage; Cardiopulmonary Resuscitation/methods; Decision Making/ethics; Hypnotics and Sedatives/administration & dosage; Neuromuscular Blocking Agents/administration & dosage; NICU; Psychological/drug therapy
Janvier A; Meadow W; Leuthner SR; Andrews B; Lagatta J; Bos Arend; Lane L; Verhagen AAE
The Journal Of Pediatrics
2011
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Journal Article
<a href="http://doi.org/10.1016/j.jpeds.2011.01.022" target="_blank" rel="noreferrer">10.1016/j.jpeds.2011.01.022</a>
Parent Distress And The Decision To Have Another Child After An Infant's Death In The Nicu
Bereavement; Decision Making; Grief; Infant Death; Nicu; Ptss; Subsequent Children
OBJECTIVE: To examine associations among parent perceptions of infant symptoms/suffering, parent distress, and decision making about having additional children after an infant's death in the NICU. DESIGN: Mixed-methods pilot study incorporating mailed surveys and qualitative interviews. SETTING: Midwestern Level IV regional referral NICU. PARTICIPANTS: Participants were 42 mothers and 27 fathers whose infants died in the NICU. METHODS: Parents reported on infant symptoms/suffering at end of life and their own grief and posttraumatic stress symptoms. Qualitative interviews explored decision making about having additional children. RESULTS: Approximately two thirds of bereaved parents had another child after their infant's death (62% of mothers, 67% of fathers). Mothers who had another child reported fewer infant symptoms at end of life compared with mothers who did not (p = .002, d = 1.28). Although few mothers exceeded clinical levels of prolonged grief (3%) and posttraumatic stress symptoms (18%), mothers who had another child endorsed fewer symptoms of prolonged grief (p = .001, d = 1.63) and posttraumatic stress (p = .009, d = 1.16). Differences between fathers mirrored these effects but were not significant. Parent interviews generated themes related to decision making about having additional children, including Impact of the Death, Facilitators/Barriers, Timing/Trajectories of Decisions, and Not Wanting to Replace the Deceased Child. CONCLUSION: Having another child after infant loss may promote resilience or serve as an indicator of positive adjustment among parents bereaved by infant death in the NICU. Prospective research is necessary to distinguish directional associations and guide evidence-based care.
Keim Madelaine C; Fortney Christine A; Shultz Emily L; Winning Adrien; Gerhardt Cynthia A; Baughcum Amy
Journal Of Obstetric, Gynecologic, And Neonatal Nursing: Jognn
2017
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10.1016/j.jogn.2017.01.009
Primary Palliative Care In Neonatal Intensive Care
Consultative; Neonatal; Nicu; Perinatal; Primary Palliative Care
Marc-Aurele K; English N
Seminars In Perinatology
2017
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10.1053/j.semperi.2016.11.005
A Descriptive Report Of End-of-life Care Practices Occurring In Two Neonatal Intensive Care Units
Death; Decision Making; Withdrawal; Patterns; Perspectives; Nicu; Infant; Neonatal; Newborns; Support Implementation; End Of Life Care; Public Environmental & Occupational Health; Palliative Care; Medicine General & Internal; Health Care Sciences & Services; Neonatal Intensive Care Unit; Palliative Care; Anesthesia; Analgesics; Intensive Care
Death; End Of Life; Neonatal; Neonatal Intensive Care Unit; Palliative Care
BACKGROUND:
In Canada and other developed countries, the majority of neonatal deaths occur in tertiary neonatal intensive care units. Most deaths occur following the withdrawal of life-sustaining treatments.
AIM:
To explore neonatal death events and end-of-life care practices in two tertiary neonatal intensive care settings.
DESIGN:
A structured, retrospective, cohort study.
SETTING/PARTICIPANTS:
All infants who died under tertiary neonatal intensive care from January 2009 to December 2013 in a regional Canadian neonatal program. Deaths occurring outside the neonatal intensive care unit in delivery rooms, hospital wards, or family homes were not included. Overall, 227 infant deaths were identified.
RESULTS:
The most common reasons for admission included prematurity (53.7%), prematurity with congenital anomaly/syndrome (20.3%), term congenital anomaly (11.5%), and hypoxic ischemic encephalopathy (12.3%). The median age at death was 7 days. Death tended to follow a decision to withdraw life-sustaining treatment with anticipated poor developmental outcome or perceived quality of life, or in the context of a moribund dying infant. Time to death after withdrawal of life-sustaining treatment was uncommonly a protracted event but did vary widely. Most dying infants were held by family members in the neonatal intensive care unit or in a parent room off cardiorespiratory monitors. Analgesic and sedative medications were variably given and not associated with a hastening of death.
CONCLUSION:
Variability exists in end-of-life care practices such as provision of analgesic and sedative medications. Other practices such as discontinuation of cardiorespiratory monitors and use of parent rooms are more uniform. More research is needed to understand variation in neonatal end-of-life care.
Lam V; Kain N; Joynt C; van Manen MA
Journal Of Palliative Medicine
2016
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DOI: 10.1177/0269216316634246
Evaluating Hospice And Palliative Medicine Education In Pediatric Training Programs.
Ccm; Nicu; Cardio; Cardiology; Critical Care Medicine; Education; Hematology; Heme/onc; Hospice; Neonatology; Oncology; Palliative Medicine; Pediatric Subspecialty
BACKGROUND:
Hospice and Palliative Medicine (HPM) competencies are of growing importance in training general pediatricians and pediatric sub-specialists. The Accreditation Council for Graduate Medical Education (ACGME) emphasized pediatric trainees should understand the "impact of chronic disease, terminal conditions and death on patients and their families." Currently, very little is known regarding pediatric trainee education in HPM.
METHODS:
We surveyed all 486 ACGME-accredited pediatric training program directors (PDs) - 200 in general pediatrics (GP), 57 in cardiology (CARD), 64 in critical care medicine (CCM), 69 in hematology-oncology (ONC) and 96 in neonatology (NICU). We collected training program's demographics, PD's attitudes and educational practices regarding HPM.
RESULTS:
The complete response rate was 30% (148/486). Overall, 45% offer formal HPM curriculum and 39% offer a rotation in HPM for trainees. HPM teaching modalities commonly reported included conferences, consultations and bedside teaching. Eighty-one percent of all respondents felt that HPM curriculum would improve trainees' ability to care for patients. While most groups felt that a HPM rotation would enhance trainees' education [GP (96%), CARD (77%), CCM (82%) and ONC (95%)], NICU PDs were more divided (55%; p < 0.05 for all comparisons vs. NICU).
CONCLUSION:
While most programs report perceived benefit from HPM training, there remains a paucity of opportunities for pediatric trainees. Passive teaching methods are frequently utilized in HPM curricula with minimal diversity in methods utilized to teach HPM. Opportunities to further emphasize HPM in general pediatric and pediatric sub-specialty training remains.
Singh AL; Klick JC; McCracken CE; Hebbar KB
American Journal Of Hospice And Palliative Medicine
2016
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).
DOI: 10.1177/1049909116643747