Serious news communication between clinicians and parents impacts parents' experiences, decision-making, and clinical care for critically ill neonates
Infant Newborn; Critical Illness; article; human; newborn; quality of life; palliative therapy; health care; parent; interpersonal communication; shared decision making; clinical outcome; neonatal intensive care unit; communication disorder; critically ill patient; decision making; prenatal diagnosis; semi structured interview; conversation; personal experience; purposive sample; clinician
Physicians often disclose serious news with patients and families; however, many clinicians experience anxiety around these conversations.1 Fear of their patients' and their own emotional reactions may cause providers to avoid these conversations rather than engage with empathy.1 Poor communication in the neonatal intensive care unit (NICU) when an infant is critically ill or dies can have deleterious effects on decision-making and long-term parental coping.2 Provision of information is imperative to shared decision-making about clinical therapies or care goals.3 Failure to effectively convey information could lead to decisions that do not align with parents' values, associated with long-term grief, decisional conflict, and regret.4, 5 Additionally, inability of clinicians to listen and engage with parents can lead to mistrust in the care team.3, 6 Parents recall in detail how serious news is delivered even years after hospitalisation,7 and their perceptions of these interactions impact their well-being.4, 7 Despite this, few studies have investigated parents' perspectives on serious news communication in the NICU. In this study, we sought to better characterise the communication problems parents of critically ill infants perceive in the antenatal and neonatal period around serious news conversations and to identify potential clinical care consequences arising from these communication issues...
Kukora S; Krenz C; DeVries R; Spector-Bagdady K
Acta Paediatrica
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/10.1111/apa.17084" target="_blank" rel="noreferrer noopener">10.1111/apa.17084</a>
Survival, short-term morbidity of extremely low gestational age infants and their predictors
Infant; sepsis; cohort analysis; controlled study; female; human; male; retrospective study; perception; palliative therapy; Pregnancy; stillbirth; gender; necrotizing enterocolitis; clinical article; gestational age; neonatal intensive care unit; prevalence; infant; conference abstract; birth weight; corticosteroid; length of stay; mortality risk; Gestational Age; brain hemorrhage; regression analysis; univariate analysis; survival prediction; encephalomalacia; morbidity; lung dysplasia; probability; retrolental fibroplasia
BACKGROUND: Despite advances in neonatal care for extremely low gestational age (ELGA) infants, they experience high rates of mortality and morbidity. Local data on survival, predictors, and outcomes of ELGA infants is crucial in order to provide accurate antenatal counseling. <br/>OBJECTIVE(S): To determine the survival and morbidities of ELGA infants in our region stratified by gestational age. DESIGN/METHODS: We performed a retrospective cohort study of infants born at <26 weeks gestational age who received intensive care at two level III Neonatal Intensive Care Units between January 1st 2014 and December 31st 2017. We excluded stillbirths and infants who received only palliative care from birth. Outcomes included survival to discharge home (or transfer to another center), length of admission, and the following short-term morbidities: intraventricular hemorrhage (IVH) grade III - IV, periventricular leukomalacia (PVL), bronchopulmonary dysplasia (BPD), necrotizing enterocolitis (NEC) Bell's Stage >=2, late-onset sepsis, and retinopathy of prematurity (ROP) requiring treatment. A multivariable regression analysis was performed to analyze three factors identified as significant (p<.05) on univariate analysis. <br/>RESULT(S): 117 infants were included: 8 infants at 22 weeks, 20 at 23 weeks, 38 at 24 weeks, and 51 at 25 weeks. The rates of survival were 37.5%, 50.0%, 68.4%, and 76.5% at 22, 23, 24, and 25 weeks, respectively. The probability of survival was similar for infants born at 22 and 23 weeks GA and significantly lower than for infants born at 24 and 25 weeks (fig.1). The mean (+/-SD) length of stay in the NICU was 114.6 +/- 33.7 days. The overall prevalence of short-term morbidities was 25.9% for IVH grade III - IV, 5.4% for PVL, 89.9% for BPD, 16.1% for NEC, 40.0% for late-onset sepsis, and 19.3% for ROP requiring treatment. Only 2.7% of infants who survived >=36 weeks (post-menstrual age) had no short-term morbidities. The multivariable regression analysis demonstrated: an increased risk of mortality for every 100g decrease in birth weight (OR=1.97; 95% CI: 1.40 - 1.98; p =.02), an increased risk of mortality for an incomplete course of antenatal corticosteroids (OR=1.58; 95% CI: 1.2 - 1.78; p =.008), and no effect of gender on mortality over time (OR=1.38; 95% CI: 0.8 - 1.68; p=.15). <br/>CONCLUSION(S): ELGA infants from our region faced similarly high rates of mortality and major short-term morbidity compared to other Canadian centers. Infants born at 22 and 23 weeks experienced similar survival trajectories, which should be further explored as it may influence clinical perceptions of viability at 22 weeks. (Figure Presented).
Kis H; Lemyre B; Radonjic A; Feberova J
Paediatrics and Child Health
2019
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/10.1093/pch/pxz066.129" target="_blank" rel="noreferrer noopener">10.1093/pch/pxz066.129</a>
Qualitative Study of Nurses' Experiences as They Learned to Provide Neonatal Palliative Care
neonatal intensive care unit; newborn intensive care; nurse; nursing education; palliative therapy; qualitative research; adult; article; Canadian; clinical article; curriculum; female; human; immersion; Infant Newborn; interview; male; meaning-making; neonatal nurse; newborn; Palliative Care; thematic analysis; therapy
Objective: To describe the experiences of nurses as they learned to provide palliative care in the NICU. Design: Interpretive description. Setting: Four NICUs in three Canadian provinces, including one rural center and three tertiary centers. Participants: Nine NICU nurses with 3 to 21 years of experience who provided neonatal palliative care. Methods: We collected data using online interviews that we recorded and transcribed. We analyzed data using immersion, inductive coding, reflective memoing, and thematic analysis. Results: Participants received little or no formal education in neonatal palliative care and instead learned to provide this care through observation and experience. Participants said it was important to find meaning in their work, which contributed to their motivation to learn to provide high-quality neonatal palliative care. Participants described challenges, including unit cultures in which early palliative care was not embraced. We identified three overarching themes that represented the participants' experiences: Meaning-Making in Neonatal Palliative Care, Challenges in Providing Neonatal Palliative Care, and Ill-Prepared to Provide Neonatal Palliative Care. Conclusion: Standardized education may improve the quality of care and nurses' experiences with neonatal palliative care. We recommend designing and evaluating a standardized curriculum on neonatal palliative care.
St Louis J; Raffin-Bouchal S; Benzies K; Sinclair S
Journal of Obstetric, Gynecologic, and Neonatal Nursing
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/10.1016/j.jogn.2023.12.005" target="_blank" rel="noreferrer noopener">10.1016/j.jogn.2023.12.005</a>
Parents' experiences of palliative care decision-making in neonatal intensive care units: An interpretative phenomenological analysis
decision making; medical ethics; neonatal intensive care unit; newborn intensive care; palliative therapy; parent; qualitative research; ambivalence; article; clinical article; father; female; human; Infant Newborn; Intensive Care Units; interview; life sustaining treatment; male; meaning-making; shared decision making
Aim: This work explores the experiences and meaning attributed by parents who underwent the decision-making process of withholding and/or withdrawing life-sustaining treatment for their newborn. Methods: Audio-recorded face-to-face interviews were led and analysed using interpretative phenomenological analysis. Eight families (seven mothers and five fathers) whose baby underwent withholding and/or withdrawing of life-sustaining treatment in three neonatal intensive care units from two regions in France were included. Results: The findings reveal two paradoxes within the meaning-making process of parents: role ambivalence and choice ambiguity. We contend that these paradoxes, along with the need to mitigate uncertainty, form protective psychological mechanisms that enable parents to cope with the decision, maintain their parental identity and prevent decisional regret. Conclusion: Role ambivalence and choice ambiguity should be considered when shared decision-making in the neonatal intensive care unit. Recognising and addressing these paradoxical beliefs is essential for informing parent support practices and professional recommendations, as well as add to ethical discussions pertaining to parental autonomy and physicians' rapport to uncertainty.
SaintDenny K; Lamore K; Nandrino JL; Rethore S; Prieur C; Mur S; Storme L
Acta Paediatrica
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/10.1111/apa.17109" target="_blank" rel="noreferrer noopener">10.1111/apa.17109</a>
Palliative Care in the Neonatal Intensive Care Unit: An Evolutionary Concept Analysis of Uncertainty in Anticipated Loss
concept analysis; neonatal intensive care unit; newborn intensive care; palliative therapy; uncertainty; article; complication; confusion; diagnosis; drug administration; genetic disorder; genetic screening; human; infant; Infant Newborn; neonatal nurse; nurse; Palliative Care; prognosis
Background: Although the concepts of uncertainty and anticipated loss have been explored in a variety of contexts, advances in genetic testing and life-sustaining technology rendered changes in the care of medically complex infants. The separate concepts no longer have the descriptive power to clarify new phenomena endured by parents in the changing neonatal landscape. A current concept analysis examining uncertainty in anticipated loss is necessary to generate knowledge concurrently with deviations observed in the neonatal intensive care unit. Purpose: To explore the concept of uncertainty in anticipated loss among parents of infants with genetic disorders. Methods: Following Rodgers' method of concept analysis, the concept was named, surrogate terms, antecedents, attributes, and consequences were identified from the literature, and a model case was constructed. The databases CINAHL, PubMed, and PsycINFO were used to conduct the literature search. Results: Fifteen articles provided the data for this analysis. Uncertainty in anticipated loss is a complex, nonlinear, and multifaceted experience anteceded by an ultimately terminal diagnosis, an ambiguous prognosis, and a lack of clear knowledge to guide treatment. Its attributes include a loss of control, assumptive world remodeling, role/identity confusion, and prolonged emotional complexity that consequently leads to a cyclical pattern of positive and negative outcomes. Implications: This newly defined concept empowers neonatal nurses to provide care that includes a holistic understanding of the experience of uncertainty in anticipated loss. Nurses are ideally positioned and have the responsibility to utilize this concept to become better advocates for infants and facilitators of parental wellness.
Lenington K; Dudding KM; Fazeli PL; Dick T; Patrician P
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.0000000000001143" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000001143</a>
Palliative Care for Infants in the Neonatal Intensive Care Unit: A Scoping Review
hospice care; nursing care; child parent relation; human; infant; Infant; Infant Newborn; Intensive Care Units; neonatal intensive care unit; newborn; Palliative Care; palliative therapy; psychology
This scoping review aimed to explore the characteristics of neonatal palliative care in the neonatal intensive care unit, including the features, contents, and experiences of infants, parents, and nurses during palliative care. Five databases (PubMed, Cochrane, CINAHL, Research Information Sharing Service, and Korean Studies Information Service System) were searched to identify relevant articles published between 2011 and 2020. From the systematic search and review process, 13 studies that met the eligibility criteria were selected for the analysis. From the literature review, 2 key principles were found to facilitate neonatal palliative care: family-centered care and integrative care in the neonatal intensive care unit. In addition, the themes found in this review included (1) providing comfortable care to dying infants with respect to infants and offering parents choices, (2) therapeutic communication, (3) support with respect, and (4) bereavement care for parents of dying infants in the neonatal intensive care unit. Caregivers require effective communication, manpower support, emotional support, educational programs, and well-defined protocols. The evidence mapped and synthesized in this review indicates the need to facilitate the provision of palliative care in the neonatal intensive care unit in line with the unique needs of infants, parents, and nurses.
Kim ES; Kim S; Ahn SY; Lee H
Journal of Hospice and Palliative Nursing
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/NJH.0000000000000985" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000985</a>
Newborn Care Curriculum: Palliative Care for the Newborn
procedures; adult; curriculum; education; feedback system; female; human; Infant Newborn; male; medical student; neonatal intensive care unit; neonatology; newborn; organization and management; palliative therapy; teaching
Introduction: Because pediatric hospitalists have increasing responsibilities in newborn hospitalization, training in perinatal palliative care is beneficial. A 2015 needs assessment revealed 68% of surveyed pediatric hospitalists were interested in more education on this topic. Thus, this learning module was designed to provide a concise, easy-to-use introduction to palliative care for the newborn. <br/>Method(s): This module was developed as part of the computer-based Newborn Care Curriculum to fill a gap in educational resources on perinatal palliative care. The primary tool in this learning module is a PowerPoint slide show with a script in the notes section. Using the presenter mode to view the PowerPoint slide show allows the learner to simultaneously view the slides and read the script for instruction. This module was tested by members of the pediatric hospitalist division at Children's National Health System in Washington, DC. Participants completed a pretest, posttest, and module evaluation. While tested as a self-study tool, the module may also be used in a small-group teaching setting. <br/>Result(s): The module was well received during the trial. The average posttest score was 96%, compared to pretest scores of 90%. Learners' comments were overwhelmingly positive, and constructive feedback has been addressed. <br/>Discussion(s): This module provides pediatric hospitalists and others who care for newborns with a well-received introduction to perinatal palliative care. The computer-based format of the module adds to its uniqueness and utility.
Anspacher M; Burd A; Stroh J; Conroy R
MedEdPORTAL
2017
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<a href="http://doi.org/10.15766/mep_2374-8265.10639" target="_blank" rel="noreferrer noopener">10.15766/mep_2374-8265.10639</a>
Chinese Neonatal Nurses' Lived Experiences of Providing End-of-Life Care in the NICU: A Descriptive Phenomenological Study
terminal care; human; newborn; psychology; emotion; neonatal intensive care unit; infant; neonatal nurse; East Asian
Background: Although end-of-life care (EOLC) has been well-studied, the experience of neonatal intensive care unit (NICU) nurses in China, where little EOLC training is provided, requires further investigation. Purpose: To explore the lived experience of EOLC delivery among NICU nurses, to provide evidence to enhance nurses' EOLC skills and improve their overall quality. Methods: This qualitative study adopted a phenomenological approach. A total of 11 NICU nurses participated in semistructured in-depth interviews between June and July 2022 at the First Affiliated Hospital of University of Science and Technology of China (USTC). Colaizzi's 7-step method was used to analyze the data. Results: Five main themes were identified: (a) multiple emotions are experienced during EOLC delivery; (b) EOLC delivery is stressful from various sources for nurses; (c) expressing empathy and compassion is important; (d) ethical and clinical decision-making are key components of EOLC delivery; and (e) there are challenges in improving neonatal EOLC understanding and delivery. Implications for practice and research: The experience of EOLC among Chinese NICU nurses is multidimensional and intensive. Institutions or units must establish and implement related protocols and guidelines to address differences between clinical practice and ideal protocols for neonatal EOLC. Educational programs that consider nurses' personal and interpersonal factors, including local culture, must be developed. Neonatal nurses in Western countries encountering Chinese-born parents who have lost their infants can gain an understanding of parents' perceptions from this study. Future research should focus on developing and testing interventions to train and support NICU nurses working with end-of-life neonates.
Tong-Hui S; Qi L; Xiao-Li R; Guo-Qin Y; Li-Ping W; Lin W
Advances in Neonatal Care
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/10.1097/ANC.0000000000001113" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000001113</a>
Implementing Palliative care, based on family-centered care, in a highly complex neonatal unit
child; article; controlled study; female; human; major clinical study; male; retrospective study; palliative therapy; terminal care; prognosis; neonatal intensive care unit; newborn death; congenital malformation; observational study; mortality; transitional care; cause of death; intimacy
Objective To describe the causes and circumstances of neonatal mortality and determine whether the implementation of a palliative care protocol has improved the quality of end-of-life care. Methods A retrospective observational study including all patient mortalities between January 2009 and December 2019. Cause of death and characteristics of support during the dying process were collected. Two periods, before and after the implementation of a palliative care protocol, were compared. Results There were 344 deaths. Congenital malformations were the most frequent cause of death (45.6 %). Most patients died after the transition to palliative care (74.4 %). The most frequently cited criteria for initiating transition of care was poor neurocognitive prognosis (47.2 %). Parents accompanied their children in the dying process in 72 % of cases. Twenty-three percent of patients died outside the Neonatal Intensive Care Unit after being transferred to a private room to enhance family intimacy. After the addition of the palliative care protocol, statistically significant differences were observed in the support and patient experience during the dying process. Conclusions The most frequent causes of death were severe congenital malformations. Most patients died accompanied by their parents after the transition to palliative care. The implementation of a palliative care protocol helped to improve the family-centered end-of-life care.
Morillo PA; Clotet CJ; Camprubi CM; Blanco DE; Silla GJ; Riverola de Veciana A
Jornal de Pediatria
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/10.1016/j.jped.2023.09.009" target="_blank" rel="noreferrer noopener">10.1016/j.jped.2023.09.009</a>
Exploring and Supporting Parents' Stories of Loss in the NICU: A Narrative Study
child; article; controlled study; human; prematurity; palliative therapy; child parent relation; grief; uncertainty; bereavement; ethics; congenital malformation; morality; neonatal intensive care unit; infant; decision making; medical care; narrative
Death is no stranger to the neonatal intensive care unit (NICU). Extreme prematurity, congenital abnormalities, and other complexities can turn what was hoped to be a very exciting moment in a family's life into one of despair and grief. There are many infants that not only do not survive but also have a medicalized death necessitating complex decision-making, weighing quality versus duration of life. We can learn from the stories of parents who chose palliative care for their children. In this narrative inquiry study, we elicited bereaved parents' stories and reflections on the lives of their children and the care they received in the NICU. From a narrative ethics perspective, their stories speak to normative aspects of parenting, decision-making, and receiving medical care that affect their moral sense-making of their NICU experiences as well as their longer-term living with the loss of their children. Their stories express the importance of having had meaningful time with their children, maintaining direct and frequent communication, acknowledging uncertainty, and emphasizing compassion as methods of providing support to parents as they navigate their bereavement.
Lakhani J; Mack C; Kunyk D; van Manen M
Qualitative Health Research
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/10.1177/10497323231201023" target="_blank" rel="noreferrer noopener">10.1177/10497323231201023</a>
A Qualitative Study of Parents' Experiences of Bonding in End-of-Life Care in a Neonatal Intensive Care Unit
child; diagnosis; terminal care; adult; article; human; newborn; clinical article; interview; content analysis; parent; pilot study; qualitative research; newborn intensive care; neonatal intensive care unit; health care personnel; infant; decision making; powerlessness; parenthood; shame
To examine the parent's experiences of bonding in the care of newborns who were seriously ill during the neonatal period and did not survive. Design: Data were collected through 7 interviews with 10 parents whose infants were cared for and died in a neonatal intensive care unit. Methods: The interviews were pilot processed using inductive content analysis and then processed again using deductive content analysis with the attachment theory applied as a theoretical frame. Results: Three main themes emerged from the parents' descriptions: 1. The parents' relationship with the healthcare provider: an alliance between the parent and the healthcare provider can facilitate communication, for example, the use of proposals to promote parents' role in the care; 2. The parents' relationship with the infant: parents' wish to fulfill the role of a protective parent, and it is of importance for the parents' future well-being to take part in care and decision making; and 3. The parents' relationship with the own self: in this unknown situation, parents' expectations of parenthood are broken, and they experience feelings of shame and powerlessness. Conclusion: The relationship between the parent and the healthcare provider affects how the parents bond with their child and their experiences of the healthcare.
Funkquist EL; Lindquist A; Edner A
Journal of Perinatal & Neonatal Nursing
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/10.1097/JPN.0000000000000780" target="_blank" rel="noreferrer noopener">10.1097/JPN.0000000000000780</a>
Lactation Support as a Proxy Measure of Family-Centered Care Quality in Neonates with Life-Limiting Conditions-A Comparative Study
article; cohort analysis; controlled study; female; hospital admission; human; major clinical study; male; retrospective study; cerebral palsy; gestational age; comparative study; hospital discharge; congenital heart disease; genetic disorder; seizure; neurologic disease; lung disease; neonatal intensive care unit; clinical assessment; mortality; infant; kidney disease; extracorporeal oxygenation; health disparity; cognitive defect; length of stay; gastrointestinal disease; do not resuscitate order; breast feeding; hypoxic ischemic encephalopathy; family centered care; sensory dysfunction; incurable disease; lactation; life limiting condition; breast pump; donor milk; learning disorder; nutritional deficiency
Lactation support is an important measure of Family-Centered Care (FCC) in the Neonatal Intensive Care Unit (NICU). Life-limiting conditions (LLCs) raise complex ethical care issues for providers and parents in the NICU and represent a key and often overlooked population for whom FCC is particularly important. We investigated healthcare disparities in FCC lactation support quality in infants with LLCs. Methods: A retrospective cohort of inborn infants with or without LLCs admitted to the NICU between 2015-2023 included 395 infants with 219 LLC infants and 176 matched non-LLC infants and were compared on LLC supports. Results: The LLC cohort experienced greater skin-to-skin support, but less lactation specialist visits, breast pumps provided, and human milk oral care use. LLC infants also experienced less maternal visitation, use of donor milk (LLC: 15.5%, non-LLC: 33.5%), and breastfeeds (LLC: 24.2%, non-LLC: 43.2%), with lower mean human milk provision (LLC: 36.6%, non-LLC: 67.1%). LLC infants who survived to discharge had similar human milk use as non-LLC infants (LLC: 49.8%, non-LLC: 50.6%). Conclusion: Lactation support was significantly absent for families and infants who presented with LLCs in the NICU, suggesting that policies can be altered to increase lactation support FCC quality for this population.
Brito S; Williams A; Fox J; Mohammed T; Chahin N; McCarthy K; Nubayaat L; Nunlist S; Brannon M; Xu J; Hendricks-Munoz KD
Children
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/10.3390/children10101635" target="_blank" rel="noreferrer noopener">10.3390/children10101635</a>
A qualitative phenomenological study of nurses' experiences in caring for infants and children with life-limiting and life-threatening conditions
child; Infant; article; female; human; male; emotion; interview; psychologist; human experiment; nurse; avoidance behavior; qualitative research; neonatal intensive care unit; infant; phenomenology; care behavior; nursing care; physiological stress; child care; pediatric nursing; emotional intelligence
Abstract Purpose: To understand the experience of nurses caring for infants and children with life limiting and life-threatening conditions. Design and methods: A qualitative phenomenological study was conducted, collecting data through deep interviews. Sample included twenty-seven nurses working in paediatric and neonatal intensive care units. Results: Four themes emerged: suffering, being there, protect yourself and support. The experience of caring for children with limiting and life-threatening conditions affects nurses positively, with personal and professional gratification, but also negatively, as it leads to the development of compartmentalization, avoidance, and high levels of stress. Conclusions: The organization should make resources available to help nurses build resilience, improve emotional intelligence, and process experiences and emotions, thereby bringing benefits and improvements in infant and childcare. Practice implications: Comparison between colleagues is one of the most effective tools for supporting each other. Dedicated times and spaces to be able to carry out the debriefings managed by the nurses themselves, guided and mediated by an expert figure, such as a psychologist or a trainer, would be recommended.
Bassola B; Cilluffo S; Ongari E; Terzoni S; Targa A; Destrebecq A; Lusignani M
Journal of Pediatric Nursing
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/10.1016/j.pedn.2023.05.013" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2023.05.013</a>
Neonatal organ donation: Retrospective audit into potential donation in a single neonatal unit
Infant, Newborn; England; article; human; newborn; newborn death; terminal care; documentation; human tissue; newborn intensive care; patient referral; neonatal intensive care unit; surgery; infant; conversation; nurse; cause of death; eligibility; transplantation; brain injury; cooling; organ donor
Background: Research has shown that many babies who die in neonatal units could have been potential tissue and/or organ donors. Despite the existence of guidelines supporting its implementation, the incidence of neonatal donation remains rare in the United Kingdom. Aim: The aim of this audit was to retrospectively determine potential eligibility for neonatal tissue and/or organ donation referral in infants who died in a single UK tertiary-level neonatal unit between 2012 and 2021. Cause of death and documentation of any discussions held regarding referral for donation were also explored. Study design: An audit was undertaken to identify all neonatal deaths at a single tertiary-level NICU in London from 2012-2021. Infants who retrospectively could have been referred as potential tissue and/or organ donors were identified using current NHS Blood and Transplant inclusion and exclusion criteria. Results and conclusion: A significant missed potential for neonatal tissue and/or organ donation referrals was identified, which is likely not just limited to the unit audited. Causes of death were as expected for a tertiary level neonatal unit and centre for therapeutic cooling of babies born with hypoxic perinatal brain injuries. Only one documented conversation was found regarding neonatal donation. Relevance to clinical practice: To enable conversations regarding neonatal donation to become a routine part of end-of-life care discussions with families as appropriate, good links between neonatal healthcare professionals and Specialist Nurses in Organ Donation need to be established. This will facilitate the referral of all suitable neonates as potential donors and ensure that neonatal staff feel supported to care for babies identified as potential donors.
Ali F; Chant K; Scales A; Sellwood M; Gallagher K
Nursing in Critical Care
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/10.1111/nicc.12943" target="_blank" rel="noreferrer noopener">10.1111/nicc.12943</a>
The efficacy of educational interventions on neonatal intensive care unit nurses knowledge and attitude toward neonatal palliative care
fatigue; Palliative Care; Infant Newborn; adult; article; controlled study; female; hospital admission; human; male; death; family; pain; chronic pain; palliative therapy; neonatal intensive care unit; nursing; prognosis; grief; anxiety; morphine; human experiment; nurse; scoring system; aggression; questionnaire; demographics; sedation; nausea and vomiting; respiration depression; care behavior; Jordan; pretest posttest design; work experience; opiate; attitude; education program; knowledge; adjuvant therapy; analgesic activity; cocaine; drowsiness; drug dependence; educational status; electrolyte disturbance; emotional deprivation; intestine; marriage; neonatal intensive care unit attitude scale; pethidine
Abuhammad S; Elayyan M; El-Bashir M
Electronic Journal of General 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.ejgm.co.uk/download/the-efficacy-of-educational-interventions-on-neonatal-intensive-care-unit-nurses-knowledge-and-12902.pdf">10.29333/ejgm/12902</a>
Siblings and End-Of-Life Decision Making in the NICU
decision making; sibling; care behavior; child; clinical article; conference abstract; content analysis; critically ill patient; Decision Making; electronic medical record; female; human; infant; male; neonatal intensive care unit; perception; semi structured interview; wellbeing
Background: When making end-of-life decisions for a child in the neonatal intensive care unit (NICU), standard practice is to involve parents in shared decision-making so that the values of parents are considered and decisions are made in the interests of the child. In this decision-making process, it is not known whether parents are influenced by the needs of their other children. Method(s): A qualitative two-phase exploratory methodology was chosen to understand how considerations for other children in the family influence parents' decisions. The electronic medical records of children ( n = 20) previously admitted to the Royal Children's Hospital's NICU were analysed for relevant mentions of siblings. Then, families ( n = 3) participated in semi-structured interviews to understand considerations of siblings. Statements and interviews were analysed using inductive content analysis. Result(s): Parents articulate the considerate juggling act of balancing the day-to-day needs of multiple children during the NICU journey. With the wellbeing of siblings in mind, parents made a range of decisions with different degrees of medical impact in the NICU. For end-of-life decisions, parents differed in their perspectives about whether considerations of siblings should be taken into account. Moreover, clinicians were aware of the challenges of caring for multiple children and supported parents with these challenges. Conclusion(s): It is clinically and ethically significant that sibling considerations impact end-of-life decision-making. We suggest clinicians reflect on their own perception of how much siblings should be allowed to influence end-of-life decisions to protect critically ill babies from harm. More research is needed to better understand these influences.
Power J; Gillam L; Prentice TM
Journal of Paediatrics and Child Health
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/10.1111/jpc.16357" target="_blank" rel="noreferrer noopener">10.1111/jpc.16357</a>
Ethics at the end of life in the newborn intensive care unit: Conversations and decisions
bioethics; conversation; decision making; ethics; neonatal intensive care unit; treatment withdrawal; active euthanasia; artificial ventilation; controlled study; critically ill patient; human; hydration; hypoxic ischemic encephalopathy; infant; Infant Newborn; Intensive Care Units; Intensive Care Units Neonatal; neonatologist; newborn; nutrition; resuscitation; review
The unexpected birth of a critically ill baby raises many ethical questions for neonatologists. Some of these are obviously ethical questions, about whether to attempt resuscitation, and, if the baby is resuscitated and survives, whether to continue life sustaining interventions. Other ethical decisions are more related to what to say rather than what to do. Although less obvious, they are equally as important, and may also have far-reaching ramifications. This essay presents the story of a newborn with profound hypoxic-ischemic encephalopathy, and reviews decisions regarding resuscitation, withdrawal of mechanical ventilation, withdrawal of medically administered nutrition and hydration, and active euthanasia. An overview of the ethical issues at work at each decision point is presented, as well as guidance regarding discussions with parents throughout the process, including specific wording. This may serve as a helpful guide for ethical deliberation, and helpful scripting for parental discussion, in similar cases.Copyright © 2023 Elsevier Ltd
Mercurio MR; Gillam L
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="http://doi.org/10.1016/j.siny.2023.101438" target="_blank" rel="noreferrer noopener">10.1016/j.siny.2023.101438</a>
Advance Care Planning and Parent-Reported End-of-Life Outcomes in the Neonatal Intensive Care Unit
advance care planning; neonatal intensive care unit; Advance Care Planning; article; child; decision making; expectation; human; infant; Infant Newborn; outcome assessment; rank sum test; satisfaction; shared decision making
OBJECTIVE: This study aimed to evaluate the impact of advance care planning (ACP) on parent-reported end-of-life (EOL) outcomes in the neonatal intensive care unit (NICU). STUDY DESIGN: Single-center, cross-sectional mixed-methods survey study of bereaved parents who experienced the death of a child in the Boston Children's Hospital NICU between 2010 and 2021. Logistic regression, chi-square test, Fisher's exact test, and Wilcoxon rank-sum test were used to evaluate the relationship between ACP and parent-reported EOL outcomes. Qualitative content was analyzed through inductive coding. RESULT(S): A total of 40/146 (27%) of eligible parents responded to our survey. There was a significant association between ACP and improved EOL care processes and parental satisfaction with communication. Parents with ACP were more likely to report goal-concordant care and higher levels of perceived shared decision-making. Qualitatively, emerging themes in parents' descriptions of goal-concordant care included misaligned expectations and communication. Emerging themes for parental preparedness included infant symptoms, logistical aspects, impact on parents, and degrees of preparedness. For decisional regret, the primary theme was reevaluating supports. CONCLUSION(S): ACP is associated with improved EOL care outcomes and parents qualitatively conceptualize goal-concordant care, preparedness for their child's death, and decisional regret in nuanced ways. Families should have the opportunity to participate in ACP discussions that meet their unique communication and decision-making needs. KEY POINTS: . ACP is associated with improved parent-reported end-of-life outcomes.. . Parents conceptualize end-of-life care outcomes in nuanced ways.. . Families should have the opportunity to participate in ACP discussions that meet their unique needs..Copyright Thieme. All rights reserved.
Lin M; Williams D; Vitcov G; Sayeed S; DeCourcey DD; Wolfe J; Cummings C
American Journal of Perinatology
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/10.1055/s-0043-1768488" target="_blank" rel="noreferrer noopener">10.1055/s-0043-1768488</a>
Paediatric palliative care in the NICU: A new era of integration
neonatal intensive care unit; palliative therapy; child; female; human; human experiment; infant; male; newborn; Palliative Care; review; skill; social needs; standard; terminal care
We are entering a new era of integration between neonatal medicine and paediatric palliative care, with increasing recognition that the role and skills of palliative care extend beyond care of only the terminally ill infant. This paper addresses the principles of paediatric palliative care and how they apply in the NICU, considers who provides palliative care in this setting and outlines the key components of care. We consider how the international standards of palliative care pertain to neonatal medicine and how a fully integrated approach to care may be realised across these two disciplines. Palliative care is so much more than end-of-life care, offering a proactive and holistic approach which addresses the physical, emotional, spiritual and social needs of the infant and family. This is a truly interdisciplinary endeavour, relying on a harmonisation of the skills from both the neonatal and palliative care teams to deliver high-quality coordinated care.Copyright © 2023
Bertaud S; Montgomery AM; Craig F
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="http://doi.org/10.1016/j.siny.2023.101436" target="_blank" rel="noreferrer noopener">10.1016/j.siny.2023.101436</a>
Barriers to and Facilitators of Neonatal Palliative Care Among Neonatal Professionals in China
child; human; palliative therapy; cross-sectional study; terminal care; neonatal intensive care unit; newborn; health personnel attitude; palliative nursing
Objectives: This study investigated institutional and personal barriers to and facilitators of neonatal palliative care facing neonatal professionals in China. Methods: A cross-sectional questionnaire surveyed 231 neonatal clinicians employed in 5 neonatal intensive care units from 2 children’s hospitals and 3 medical centers in China. Measurements: The translated modified version of the Neonatal Palliative Care Attitude Scale was used to survey neonatal clinicians’ attitudes and beliefs regarding neonatal palliative care. Results: Findings highlight 4 facilitators and 5 barriers among participating clinicians. Participants gave contradictory responses regarding the relative importance of curative treatment versus palliative care in the NICU. Negatively traumatic feelings, cultural issues and moral distress may impact this contradictory response and discourage clinicians from providing neonatal palliative care. Additionally, neonatologists and nurses held differing attitudes on several topics (p < 0.05). Conclusion: Further research should address strategies to improve knowledge and attitudes and relieve moral distress in NICU clinicians. Neonatal clinicians providing neonatal palliative care should receive regular palliative care training addressing culture- specific issues and communication skills. Practice Implications: Study findings will be beneficial to inform clinical education and practice. Regular interdisciplinary team training is needed to enhance support for palliative care and decrease clinicians’ moral distress during end-of-life care.
Gu L; Li ZZ; Peng NH; Zhou JF; Wei BR; Chang YC
American Journal of Hospice and Palliative Medicine
2022
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<a href="http://doi.org/10.1177/10499091211046236" target="_blank" rel="noreferrer noopener">10.1177/10499091211046236</a>
Neonatal Palliative Care Practices: An Indian Perspective
article; female; human; human experiment; India; male; memory; middle income country; neonatal intensive care unit; neonatal nurse; neonatologist; newborn; palliative therapy; photography; practice guideline; questionnaire; terminal care
Background: Neonatal palliative care (NPC) aims to prevent and relieve the suffering of neonates who are not going to recover. Although an integral part of neonatal care, it remains in nascent stages in many parts of the world. Aim(s): To describe neonatologists' level of knowledge and understanding of NPC, and to describe current practices and barriers to its delivery. Method(s): The study, a cross-sectional web-based national survey, was undertaken between 2019 and 2020. A structured form of 22 questions about NPC was completed by neonatologists across level III neonatal intensive care units in India. Result(s): Of the 145 questionnaires sent out, 65 responses were returned (44.8%). The participating units were in both public (38.5%) and private/corporate hospitals (61.5%). The concept of NPC was known to 90.8%, and 93.8% could identify conditions necessitating palliation. However, 81.5% of units lacked a palliative team, and few had teams of only neonatologists and neonatal nurses. Only 10.8% of the units had a structured policy, but none addressed all aspects of neonatal palliation. The creation of memories by parents spending time with their neonate (38.9%), photography (75.9%), footprints (13%) or collecting memorabilia was allowed at many centres. Frequently encountered barriers included inadequate knowledge (16.9%), poor infrastructure (21.5%), inadequate human resources (24.6%) and a lack of structured guidelines and legal support (15.4%). Conclusion(s): This is the first study to highlight a large gap in neonatal end-of-life care in India and it reflects an urgent need to facilitate its incorporation into routine care. Abbreviations: NICU: neonatal intensive care unit; NPC: neonatal palliative care. Copyright © 2022 Informa UK Limited, trading as Taylor & Francis Group.
Mascarenhas D; Goyal M; Nanavati R
Paediatrics and International Child Health
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/10.1080/20469047.2022.2089821" target="_blank" rel="noreferrer noopener">10.1080/20469047.2022.2089821</a>
Parent-Reported Experience Measures of Care for Children with Serious Illnesses: A Scoping Review
Child Care; Childhood Disease; Chronic Disease; Parental Attitude; Patient-Reported Outcome; Personal Experience; Caregiver Support; Child; Emergency Care; Empowerment; Health Care Delivery; Health Care Quality;Hospice Care; Hospital Care; Hospitalized Child; Human; Long Term Care; Neonatal Intensive Care Unit; Palliative Therapy; Review; Shared Decision Making; Systematic Review; Terminal Care
OBJECTIVE: This scoping review aimed to: 1) identify parent-reported experience measures (PaREMs) for parents of children with serious illnesses from peer-reviewed literature, 2) map the types of care experience being evaluated in PaREMs, 3) identify and describe steps followed in the measure development process, including where gaps lie and how PaREMs may be improved in future efforts, and 4) help service providers choose a PaREM suitable for their service delivery setting and strategy. DATA SOURCES: Relevant articles were systematically searched from PubMed, CINAHL, and Scopus EBSCOhost databases until June 10, 2021, followed by a manual reference list search of highly relevant articles. STUDY SELECTION: Abstracts were screened, followed by a full-text review using predetermined inclusion and exclusion criteria. DATA EXTRACTION: A standardized data extraction tool was used. DATA SYNTHESIS: Sixteen PaREMs were identified. There were large variances in the development processes across measures, and most have been developed in high-income, English-speaking Western countries. Most only assess the quality of acute inpatient care. Few measures can be used by multiple service providers or chronic care, and many do not capture all relevant domains of the parent experience. CONCLUSION(S): Service providers should integrate PaREMs into their settings to track and improve the quality of care. Given the multidisciplinary nature of pediatric care and the often-unpredictable disease trajectories of seriously ill children, measures that are applicable to multiple providers and varying lengths of care are essential for standardized assessment of quality of care and coordination among providers. To improve future PaREM development, researchers should follow consistent and methodologically robust steps, ideally in more diverse sociocultural and health systems contexts. Future measures should widen their scope to be applicable over the disease trajectory and to multiple service providers in a child's network of care for a comprehensive evaluation of experience.Copyright © 2022 Lippincott Williams and Wilkins. All rights reserved.
Ang FJL; Finkelstein EA; Gandhi M
Pediatric Critical Care Medicine
2022
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<a href="http://doi.org/10.1097/PCC.0000000000002996" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000002996</a>
Palliative Care Nurse: A Quantitative Study of Caring for Neonates at End-Of-Life Stage
Care Behavior; Health Care Quality; Intensive Care; Nurse; Nursing Care; Palliative Therapy; Terminal Care; Article; Checklist; Content Validity; Controlled Study; Correlation Coefficient; Face Validity; Human; Infant; Neonatal Intensive Care Unit; Newborn; Practice Guideline; Reliability
Objective: This study aimed to evaluate the quality of the care provided to newborns at End-of-Life (EOL) stages and compare the care which is already being given to the infants admitted to the NICUs of the selected hospital in (XXX) with the existing standards. Knowing how End-of-Life nursing care is provided, compared with the standard in the terminal stage of neonates' life can provide accurate information for policies, research, and educational practices. Method(s): In this descriptive study, 100 nursing care services, provided to neonates at the EOL stages and their parents, were observed and compared to the standard checklist which had been developed based on the literature review and existing standards in 2015. The study setting included the NICUs of the four hospitals affiliated to (XXX) The Content and Face Validity of the checklist were determined based on specialists' comments. The Content Validity Index was 94.85%, and its reliability was evaluated too through the inter-rater correlation coefficient (ICC = 0.715). Result(s): Only 11.49% of EOL nursing care services were given properly and 77.92% were not given at all. Results showed that 10.59% of EOL nursing care services were performed improperly. Conclusion(s): The overall rate of accordance with the EOL nursing care standards was poor (16.78%). Nursing care given to infants and their parents at EOL stages is far from the standards. This can be due to various reasons, such as inadequate training and the lack of comprehensive guidelines.Copyright © 2022 The Authors
Shahintab S; Nourian M; Rassouli M; Pourhoseingholi MA
Annals of Medicine and Surgery
2022
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<a href="http://doi.org/10.1016/j.amsu.2022.104729" target="_blank" rel="noreferrer noopener">10.1016/j.amsu.2022.104729</a>
Nurses' involvement in end-of-life decisions in neonatal intensive care units
Decision making; End-of-life; Neonatal intensive care unit; Nurses
BACKGROUND: End-of-life decision-making for terminally ill neonates raises important legal and ethical issues. In Greece, no recent data on nurses' attitudes and involvement in end-of-life decisions are available. RESEARCH QUESTION/AIM: To investigate neonatal nurses' attitudes and involvement in end-of-life decisions and the relation to their socio-demographic and work-related background data. RESEARCH DESIGN: A survey was carried out in 28 neonatal intensive care units between September 2018 and January 2019. A structured questionnaire was distributed by post. PARTICIPANTS AND RESEARCH CONTEXT: The questionnaire was answered anonymously by 312 nurses (response rate, 71.1%) and returned to the investigators. ETHICAL CONSIDERATIONS: The study was approved by the Bioethics and Research Committee of Aretaieio Hospital in accordance with the Helsinki Declaration. FINDINGS: Nurses more often reported involvement in various end-of-life decisions, such as continuation of treatment without adding further therapeutic interventions for terminally ill neonates, while less reported were mechanical ventilation withdrawal and drug administration to end life. Nurses with a high attitude score, reflecting a more quality-of-life approach, were more likely to be involved in setting limits to intensive care. alpha low score was consistent with life preservation. Nurses' religiousness (p = 0.097), parenthood (p = 0.093), involvement in daily practice (p = 0.03), and position on the existing legal framework (p < 0.002) influenced their attitude score. DISCUSSION: The likelihood of nurses to support interventions in neonates with poor prognosis in neonatal intensive care units was related to their attitudes. After adjusting for potential confounders, the most important predictors for nurses' attitudes were parenthood, involvement in daily practice, and position supporting current legislation reform. CONCLUSION(S): Variability in involvement in end-of-life decisions among nurses exists on a national level.
Chatziioannidis I; Pouliakis A; Cuttini M; Boutsikou T; Giougi E; Volaki V; Sokou R; Xanthos T; Iliodromiti Z; Iacovidou N
Nursing Ethics
2022
<a href="http://doi.org/10.1177/09697330211035505" target="_blank" rel="noreferrer noopener">10.1177/09697330211035505</a>
End-of-Life Decision-Making in Pediatric and Neonatal Intensive Care Units in Croatia-A Focus Group Study among Nurses and Physicians
Infant Newborn; Intensive Care Units Neonatal; Physicians; Terminal Care; Adult; Child; critical care; Croatia; Death; Decision Making; end-of-life; focus groups; Focus Groups; Humans; Intensive Care Units; neonatal intensive care unit; nurses; pediatric intensive care unit; physicians
Background and Objectives: Working in pediatric and neonatal intensive care units (ICUs) can be challenging and differs from work in adult ICUs. This study investigated for the first time the perceptions, experiences and challenges that healthcare professionals face when dealing with end-of-life decisions in neonatal intensive care units (NICUs) and pediatric intensive care units (PICUs) in Croatia. Materials and Methods: This qualitative study with focus groups was conducted among physicians and nurses working in NICUs and PICUs in five healthcare institutions (three pediatric intensive care units (PICUs) and five neonatal intensive care units (NICUs)) at the tertiary level of healthcare in the Republic of Croatia, in Zagreb, Rijeka and Split. A total of 20 physicians and 21 nurses participated in eight focus groups. The questions concerned everyday practices in end-of-life decision-making and their connection with interpersonal relationships between physicians, nurses, patients and their families. The constant comparative analysis method was used in the analysis of the data. Results: The analysis revealed two main themes that were the same among the professional groups as well as in both NICU and PICU units. The theme "critical illness" consisted of the following subthemes: the child, the family, myself and other professionals. The theme "end-of-life procedures" consisted of the following subthemes: breaking point, decision-making, end-of-life procedures, "spill-over" and the four walls of the ICU. The perceptions and experiences of end-of-life issues among nurses and physicians working in NICUs and PICUs share multiple common characteristics. The high variability in end-of-life procedures applied and various difficulties experienced during shared decision-making processes were observed. Conclusions: There is a need for further research in order to develop clinical and professional guidelines that will inform end-of-life decision-making, including the specific perspectives of everyone involved, and the need to influence policymakers.
Rubic F; Curkovic M; Brajkovic L; Nevajdic B; Novak M; Filipovic-Grcic B; Mestrovic J; Lah Tomulic K; Peter B; Borovecki A
Medicina (Kaunas)
2022
<a href="http://doi.org/10.3390/medicina58020250" target="_blank" rel="noreferrer noopener">10.3390/medicina58020250</a>
Communication of bad news in the context of neonatal palliative care: experience of intensivist nurses
communication; Neonatal Intensive Care Unit; Newborns; nurse perspectives
OBJECTIVES: To know the experiences of nurses in neonatal intensive care units in the face of the process of communicating bad news to the family of newborns in palliative care. METHODS: Study with a descriptive qualitative approach, in which 17 professionals participated. Data were collected through a semi-structured interview script, from December/2018 to February/2019, and submitted to content analysis. RESULTS: Four theoretical categories emerged, with 11 subcategories inserted: meanings attributed to bad news; nursing as a support for the family; difficulties in dealing with the process of communicating bad news; nursing and involvement with the family's suffering. FINAL CONSIDERATIONS: The challenges to deal with the situation are related to lack of preparation, impotence, and subjectivities. The results broaden knowledge on the subject and enable the improvement of nursing care in this context.
Camilo BHN; Serafim TC; Salim NR; Andreato AMO; Roveri JR; Misko MD
Revista Gaucha de Enfermagem
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/10.1590/1983-1447.2022.20210040" target="_blank" rel="noreferrer noopener">10.1590/1983-1447.2022.20210040</a>
Future roles of artificial intelligence in early pain management of newborns
neonatal intensive care unit; neonatal pain assessment; neonatal pain prediction; newborn pain management; opioid-based pain management
The advent of increasingly sophisticated medical technology, surgical interventions, and supportive healthcare measures is raising survival probabilities for babies born premature and/or with life-threatening health conditions. In the United States, this trend is associated with greater numbers of neonatal surgeries and higher admission rates into neonatal intensive care units (NICU) for newborns at all birth weights. Following surgery, current pain management in NICU relies primarily on narcotics (opioids) such as morphine and fentanyl (about 100 times more potent than morphine) that lead to a number of complications, including prolonged stays in NICU for opioid withdrawal. In this paper, we review current practices and challenges for pain assessment and treatment in NICU and outline ongoing efforts using Artificial Intelligence (AI) to support pain- and opioid-sparing approaches for newborns in the future. A major focus for these next-generation approaches to NICU-based pain management is proactive pain mitigation (avoidance) aimed at preventing harm to neonates from both postsurgical pain and opioid withdrawal. AI-based frameworks can use single or multiple combinations of continuous objective variables, that is, facial and body movements, crying frequencies, and physiological data (vital signs), to make high-confidence predictions about time-to-pain onset following postsurgical sedation. Such predictions would create a therapeutic window prior to pain onset for mitigation with non-narcotic pharmaceutical and nonpharmaceutical interventions. These emerging AI-based strategies have the potential to minimize or avoid damage to the neonate's body and psyche from postsurgical pain and opioid withdrawal.
Salekin MS; Mouton PR; Zamzmi G; Patel R; Goldgof D; Kneusel M; Elkins SL; Murray E; Coughlin ME; Maguire D; Ho T; Sun Y
Paediatric and Neonatal Pain
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/10.1002/pne2.12060" target="_blank" rel="noreferrer noopener">10.1002/pne2.12060</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
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<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
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<a href="http://doi.org/10.1089/jpm.2019.0523" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0523</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>
Preparing Nurses for Palliative Care in the NICU
End-of-Life Nursing Education Consortium (ELNEC); neonatal intensive care unit; nurses; nursing; palliative care; pediatric palliative care
Background: Neonatal intensive care unit (NICU) nurses require knowledge and skill to meet the unique needs of infants and families. Increasingly, principles of palliative care are being integrated into the NICU setting to improve the quality of care.Purpose: The purpose of this article is to describe the efforts of the End-of-Life Nursing Education Consortium (ELNEC) project and its Pediatric Curriculum, which began in 2003 to provide this education, and to also describe efforts by nurses to implement the training into their practice settings.Methods: The ELNEC Pediatric Palliative Care (ELNEC-PPC) project is a train-the-trainer educational program and evidence-based curriculum.Findings/results: Participants attend a course or receive online training and then apply the education to implement improved practices in areas such as symptom management, care at the time of death, and bereavement support for families.Implications For Research: Experiences with ELNEC-PPC have demonstrated that nurses can implement the curriculum to improve care.Implications For Practice: Continued attention to palliative care in this setting is needed, and future research is needed to evaluate the outcomes of this education and practice change.
Ferrell B; Thaxton C A; Murphy H; Fortney C A
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.0000000000000705" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000000705</a>
Palliative care in an underserved community: Striving and thriving
awareness; bereavement support; bone marrow; cancer patient; Caribbean; child; childhood cancer; conference abstract; congenital malformation; coordination compound; ethnic group; Europe; female; heart; Hispanic; hospice; hospital patient; human; Japan; kidney; liver; major clinical study; male; medicaid; memory; Middle East; music therapy; neonatal intensive care unit; newborn; nursing education; pain; palliative therapy; pastoral care; perception; posthumous care; resident; sibling; social work; terminal care; terminally ill patient
Program Goals: Our program is uniquely positioned in a safety net hospital that serves as a large tertiary referral center for pediatric transplant, trauma and heart failure as well as being an international catchment area for the southern hemisphere. Meeting the palliative care needs of our medically complex and chronically ill children proves to be a tremendous challenge, oftentimes made worse by the fact that our most technology dependent children may be uninsured with families that have little to no resources. Despite the complexity of our population and our many financial and socioeconomic constraints, we have a burgeoning Pediatric Palliative Care (PPC) Service that strives to provide quality independent of our patients' circumstances. Evaluation: In 2008, we sought to institute PPC without having dedicated FTE's. By 2013, we had convened a consistent team with existing staff and improved the awareness and importance of palliative care. Our program has experienced significant growth and now consists of one full time PPC Nurse, one volunteer faculty physician, child life, music therapy, behavioral health, pastoral care, social work and volunteer services. In 2016, our team received 176 consults - a 76% increase from our initial efforts in 2013. The majority were for Pediatric Transplant patients including Bone Marrow, Cardiac, Renal, Liver, Intestinal and Multivisceral, accounting for 23% of our total. Pediatric Oncology was our next most frequent category at 20%. The third most common consultation was for complex congenital malformations and syndromes from the Neonatal ICU at 11%. 79% of our consults consisted of ethnic minorities (Black and Hispanic). Historically, our institution serves 80% Medicaid and 3% unfunded patients. Approximately 20% of our patient population consists of international referrals and in 2016 our consults included patients from the Middle East, Caribbean, South and Central America, Europe and Japan. Our services to patients include coordination of complex care, discharges to hospice, pain and symptom management, family and sibling support, field trips and even meal, transportation and gym access vouchers. We have facilitated international medical transportation of terminally ill children back to their countries of origin to provide a peaceful death surrounded by loved ones in a familiar environment. From our cumulative PPC census, there were 90 deaths in 2016. All members of our team assisted with inpatient end of life care, memory building, bereavement services and even funeral arrangements and expenses where possible.
Alladin A R; Juanico K; Webster-Carrion A; Nares M; Cantwell G P
Pediatrics
2018
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).
Sign Me Up! Understanding Referral and Enrollment to Community-Based Pediatric Hospice and Palliative Care (FR420D)
child; cohort analysis; conference abstract; controlled study; demography; female; hospice; human; insurance; major clinical study; male; neonatal intensive care unit; nervous system; palliative therapy; patient referral; pediatric hospital; preschool child; retrospective study; speech; total quality management
Objectives: * List the types of community-based hospice and palliative care programs for children and describe barriers and facilitators to the use of these programs. * Describe the rates of referral and enrollment to community-based programs, factors associated with referral, and describe how these findings can be used to improve access to appropriate use of community-based care. Original Research Background: While access to community-based hospice and palliative care programs has increased for seriously ill children, we know little on a population level about which children are referred and enrolled into these programs. Research Objectives: To describe referrals and enrollment for community-based care from a hospital-based pediatric palliative care (PPC) service, and to identify factors associated with referral.
Lotstein D; Caliboso M; Lindley L; Wolfe J
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2019.12.134" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.134</a>
Grief and Bereavement Support for Families and Healthcare Professionals as Part of Integrated Care in Pediatric/Neonatal Intensive Care Units around the World (TH340A)
bereavement support; child; conference abstract; controlled study; convenience sample; demography; female; financial management; gender; health care personnel; high income country; human; male; neonatal intensive care unit; newborn; newborn death; palliative therapy; patient coding; pediatric intensive care unit; perception; prospective study; questionnaire; statistical significance; World Bank
Objectives: * Recognize how PICUs/NICUs implement GBS IPPC recommendations. * Describe how PICUs/NICUs' resource influence their GBS care provision as related to IPPC recommendations. Original Research Background: Grief and bereavement support (GBS) is important for the wellbeing and functioning of patients, families, and healthcare professionals (HCPs) and is part of the Integrated Model of Care (IMOC) in which ICU personnel address critical and palliative care (PC) needs concurrently. The Initiative for Pediatric Palliative Care (IPPC) guidelines can build PC capacity. Identifying existing PC resources/competencies amongst potential IPPC adopters maximizes implementation effectiveness. Research Objectives: We assessed if PICUs/NICUs implement GBS IPPC recommendations and if units' resources shape care provision.
Grunauer M; Bustamante G; Zambrano K
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2019.12.077" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.077</a>
Frequency and Clinical Characteristics Associated With Pediatric Deaths In a Tertiary Hospital in a Developing Country - Opportunities for Pediatric Palliative Care
antibiotic therapy; artificial ventilation; brain death; cause of death; child; clinical feature; comfort; conference abstract; controlled study; demography; developing country; diagnosis; drug withdrawal; female; health care quality; hospital patient; human; human tissue; inotropism; life sustaining treatment; major clinical study; male; medical record; neonatal intensive care unit; newborn; palliative therapy; pediatric patient; resuscitation; retrospective study; sedation; statistical analysis; terminal care; tertiary care center
Background: Colombia does not have knowledge about the clinical characteristics of pediatric deaths caused by life-threatening conditions and/or serious illness within the hospital setting.
Cuervo Suarez M I; Munoz M; Garcia X
Journal of Pain and Symptom Management
2018
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.2018.10.414" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.414</a>
Center, Gestational Age, and Race Impact End-of-Life Care Practices at Regional Neonatal Intensive Care Units
article; Black person; cause of death; central nervous system; child; cohort analysis; controlled study; do not resuscitate order; drug withdrawal; female; gestational age; human; infant; injury; life sustaining treatment; major clinical study; male; Neonatal Intensive Care Unit; newborn; newborn death; retrospective study; terminal care
Objective: To assess the impact of intercenter variation and patient factors on end-of-life care practices for infants who die in regional neonatal intensive care units (NICUs). Study design: We conducted a retrospective cohort analysis using the Children's Hospital Neonatal Database during 2010-2016. A total of 6299 nonsurviving infants cared for in 32 participating regional NICUs were included to examine intercenter variation and the effects of gestational age, race, and cause of death on 3 end-of-life care practices: do not attempt resuscitation orders (DNR), cardiopulmonary resuscitation within 6 hours of death (CPR), and withdrawal of life-sustaining therapies (WLST). Factors associated with these practices were used to develop a multivariable equation.
Fry J T; Matoba N; Datta A; DiGeronimo R; Coghill C H; Natarajan G; Brozanski B; Leuthner S R; Niehaus J Z; Schlegel A B; Shah A; Zaniletti I; Bartman T; Murthy K; Sullivan K M; Asselin J; Durand D; Dykes F; Evans J; Padula M; Pallotto E; Grover T; Piazza A; Reber K; Short B
Journal of Pediatrics
2019
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.jpeds.2019.10.039" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2019.10.039</a>
Palliative and end-of-life care for infants and their families in the NICU: Building a program of research
article; human; infant; neonatal intensive care unit; terminal care
This article is a brief report on the building of a program of research to support palliative and end-of-life care for infants and their families in the neonatal intensive care unit.
Fortney C A
Journal of pediatric nursing.
2019
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.pedn.2019.09.019" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2019.09.019</a>
Psychological support in end-of-life decision-making in neonatal intensive care units: Full population survey among neonatologists and neonatal nurses
article; Belgium; burnout; controlled study; counseling; decision making; human; Likert scale; neonatal intensive care unit; neonatal nurse; neonatologist; newborn; perinatal death; questionnaire; terminal care
Background: Moral distress and burnout related to end-of-life decisions in neonates is common in neonatologists and nurses working in neonatal intensive care units. Attention to their emotional burden and psychological support in research is lacking. Aim: To evaluate perceived psychological support in relation to end-of-life decisions of neonatologists and nurses working in Flemish neonatal intensive care units and to analyse whether or not this support is sufficient. Design/participants: A self-administered questionnaire was sent to all neonatologists and neonatal nurses of all eight Flemish neonatal intensive care units (Belgium) in May 2017. The response rate was 63% (52/83) for neonatologists and 46% (250/527) for nurses. Respondents indicated their level of agreement (5-point Likert-type scale) with seven statements regarding psychological support. Results: About 70% of neonatologists and nurses reported experiencing more stress than normal when confronted with an end-of-life decision; 86% of neonatologists feel supported by their colleagues when they make end-of-life decisions, 45% of nurses feel that the treating physician listens to their opinion when end-of-life decisions are made. About 60% of both neonatologists and nurses would like more psychological support offered by their department when confronted with end-of-life decisions, and 41% of neonatologists and 50% of nurses stated they did not have enough psychological support from their department when a patient died. Demographic groups did not differ in terms of perceived lack of sufficient support. Conclusion: Even though neonatal intensive care unit colleagues generally support each other in difficult end-of-life decisions, the psychological support provided by their department is currently not sufficient. Professional ad hoc counselling or standard debriefings could substantially improve this perceived lack of support.
Dombrecht L; Cohen J; Cools F; Deliens L; Goossens L; Naulaers G; Beernaert K; Chambaere K; Laroche S; Theyskens C; Vandeputte C; Cornette L; Van de Broek H
Palliative Medicine
2019
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/10.1177/0269216319888986" target="_blank" rel="noreferrer noopener">10.1177/0269216319888986</a>