Delivery Room Deaths Of Extremely Preterm Babies: An Observational Study
Management; Epipage-2; Decision Making; Weeks Gestation; Palliative Care; Perspectives; Birth; Challenge; Infant; Delivery Rooms; Perinatal Palliative Care; Extreme Prematurity; Comfort Care; Death; Pediatrics
Palliative Care; Comfort Care; Delivery Room; Dying; Extreme Prematurity
OBJECTIVE:
Many extremely preterm neonates die in the delivery room (DR) after decisions to withhold or withdraw life-sustaining treatments or after failed resuscitation. Specific palliative care is then recommended but sparse data exist about the actual management of these dying babies. The objective of this study was to describe the clinical course and management of neonates born between 22 and 26 weeks of gestation who died in the DR in France.
DESIGN, SETTING, PATIENTS:
Prospective study including neonates, who were liveborn between 22+0 and 26+6 weeks of gestation and died in the DR in 2011, among infants included in the EPIPAGE-2 study at the 18 centres participating in this substudy of extremely preterm neonates. Data were collected by a questionnaire completed by the professional caring for each baby.
RESULTS:
The study included 73 children, with a median (IQR) gestational age of 24 (23-24) weeks. Median (IQR) duration of life was 53 (20-82) min. All but one were both wrapped and warmed. Pain was assessed for 72%, although without using any scale. Gasping was described for 66%. Comfort medications were administered to 35 children (50%), significantly more frequently to babies with gasping (p=0.001). Mother-child contact was reported for 78%, and psychological support offered to parents of 92%.
CONCLUSIONS:
Non-pharmacological comfort care and parental support were routinely given. Comfort medication was given much more frequently than previously reported in other DRs. These data should encourage work on the indications for comfort medication and the interpretation of gasping.
X Durrmeyer
Archives Of Disease In Childhood. Fetal And Neonatal Edition
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: 10.1136/archdischild-2016-310718
Measuring And Communicating Meaningful Outcomes In Neonatology: A Family Perspective
Parents; Neurodevelopmental Outcomes; Child; Composite End-points; Birth; Down-syndrome; Obstetrics & Gynecology; Extremely Preterm Infants; Of-life Decisions; Pediatrics; Gestational Age
Extreme Prematurity; Congenital Anomalies; Neonatal Intensive Care Unit; Life-sustaining Interventions; End-of-life Decision Making; Disability; Screening; Palliative Care; Family-centered Care; Communication; Empathy
Abstract
Medium- and long-term outcomes have been collected and described among survivors of neonatal intensive care units for decades, for a number of purposes: (1) quality control within units, (2) comparisons of outcomes between NICUs, (3) clinical trials (whether an intervention improves outcomes), (4) end-of-life decision-making, (5) to better understand the effects of neonatal conditions and/or interventions on organs and/or long-term health, and finally (6) to better prepare parents for the future. However, the outcomes evaluated have been selected by investigators, based on feasibility, availability, cost, stability, and on what investigators consider to be important. Many of the routinely measured outcomes have major limitations: they may not correlate well with long-term difficulties, they may artificially divide continuous outcomes into dichotomous ones, and may have no clear relationship with quality of life and functioning of children and their families. Several investigations, such as routine term cerebral resonance imaging for preterm infants, have also not yet been shown to improve the outcome of children nor their families. In this article, the most common variables used in neonatology as well as some variables which are rarely measured but may be of equal importance for families are presented. The manner in which these outcomes are communicated to families will be examined, as well as recommendations to optimize communication with parents.
Abbreviations
BPD, bronchopulmonary dysplasia; BSID, Bayley Scales of Infant Development; GA, gestational age; NDI, neurodevelopmental impairment; NICU, neonatal intensive care unit; ROP, retinopathy of prematurity
Keywords
Extreme prematurity; Congenital anomalies; Neonatal intensive care unit; Life-sustaining interventions; End-of-life decisions; Disability; Screening; Palliative care; Family-centered care; Communication; Empathy
Annie Janviera; Barbara Farlow; Jason Baardsnesf; Rebecca Pearceg; Keith J Barringtona
Seminars In Perinatology
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).
http://dx.doi.org/10.1053/j.semperi.2016.09.009
A waste of life: Fathers' experience of losing a child before birth
Child; Fathers
2001
Samuelsson M; Radestad I; Segesten K
Birth
2001
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).
Journal Article
<a href="http://doi.org/10.1046/j.1523-536x.2001.00124.x" target="_blank" rel="noreferrer">10.1046/j.1523-536x.2001.00124.x</a>
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
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/10.22038/ijp.2018.28630.2511" target="_blank" rel="noreferrer noopener">10.22038/ijp.2018.28630.2511</a>
Parental decision-making following a prenatal diagnosis that is lethal, life-limiting, or has long term implications for the future child and family: a meta-synthesis of qualitative literature
Abortion; Birth; Continuation; Disorder; Life-limiting; Pregnancy; Termination
BACKGROUND: Information on the factors influencing parents' decision-making process following a lethal, life-limiting or severely debilitating prenatal diagnosis remains deficient. A comprehensive systematic review and meta-synthesis was conducted to explore the influencing factors for parents considering termination or continuation of pregnancy following identification of lethal, life-limiting or severely debilitating fetal abnormalities. METHODS: Electronic searches of 13 databases were conducted. These searches were supplemented by hand-searching Google Scholar and bibliographies and citation tracing. Thomas and Harden's (2008) thematic synthesis method was used to synthesise data from identified studies. RESULTS: Twenty-four papers were identified and reviewed, but two papers were removed following quality assessment. Three main themes were identified through systematic synthesis. Theme 1, entitled 'all life is precious', described parents' perception of the importance of the fetus' life, a fatalistic view of their situation alongside moral implications as well as the implications decisions would have on their own life, in consideration of previous life experiences. Theme 2 ('hope for a positive outcome') contained two sub-themes which considered the parent's own imagined future and the influence of other people's experiences. Finally, Theme 3 ('a life worth living') presented three sub-themes which may influence their parental decision-making: These described parental consideration of the quality of life for their unborn child, the possibility of waiting to try for another pregnancy, and their own responsibilities and commitments. CONCLUSION: The first review to fully explore parental decision-making process following lethal, life-limiting, or severely debilitating prenatal diagnosis provided novel findings and insight into which factors influenced parents' decision-making process. This comprehensive and systematic review provides greater understanding of the factors influential on decision-making, such as hope, morality and potential implications on their own and other's quality of life, will enable professionals to facilitate supported decision-making, including greater knowledge of the variables likely to influence parental choices.
Blakeley C; Smith D M; Johnstone E D; Wittkowski A
BMC Medical Ethics
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/10.1186/s12910-019-0393-7" target="_blank" rel="noreferrer noopener">10.1186/s12910-019-0393-7</a>
Parents' experiences of care offered after stillbirth: An international online survey of high and middle-income countries
stillbirth; parents; bereavement care; high-income countries; middle-income countries
BACKGROUND: Stillbirth, the death of a baby before birth, is associated with significant psychological and social consequences that can be mitigated by respectful and supportive bereavement care. The absence of high-level evidence to support the broad scope of perinatal bereavement practices means that offering a range of options identified as valued by parents has become an important indicator of care quality. This study aimed to describe bereavement care practices offered to parents across different high-income and middle-income countries. METHODS: An online survey of parents of stillborn babies was conducted between December 2014 and February 2015. Frequencies of nine practices were compared between high-income and middle-income countries. Differences in proportions of reported practices and their associated odds ratios were calculated to compare high-income and middle-income countries. RESULTS: Over three thousand parents (3041) with a self-reported stillbirth in the preceding five years from 40 countries responded. Fifteen countries had atleast 40 responses. Significant differences in the prevalence of offering nine bereavement care practices were reported by women in high-income countries (HICs) compared with women in middle-income countries (MICs). All nine practices were reported to occur significantly more frequently by women in HICs, including opportunity to see and hold their baby (OR = 4.8, 95% CI 4.0-5.9). The widespread occurrence of all nine practices was reported only for The Netherlands. CONCLUSIONS: Bereavement care after stillbirth varies between countries. Future research should look at why these differences occur, their impact on parents, and whether differences should be addressed, particularly how to support effective communication, decision-making, and follow-up care.
Horey D; Boyle FM; Cassidy J; Cassidy PR; Erwich JJHM; Gold KJ; Gross MM; Heazell AEP; Hopkins Leisher S; Murphy M; Ravaldi C; Siassakos D; Storey C; Vannacci A; Wojcieszek A; Flenady V
Birth
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/10.1111/birt.12546" target="_blank" rel="noreferrer noopener">10.1111/birt.12546</a>
Psychosocial Support within the Context of Perinatal Palliative Care: The "SORROWFUL" Model
bereaved parents; Birth; dying; life-limiting disease; neonates; Palliative Care
Against the background of a society that tends to underrate the grief experienced by parents whose infants have died prematurely, the model "SORROWFUL" is presented here with the intent to highlight the significance of the death of a newborn for the affected family. It is a supportive tool in counseling for parents grieving the (impending) loss of an infant(s) during peri- or neonatal life and may be implemented within the parental psychosocial support setting beginning with the initial diagnosis until well after the death of the child. The model intentionally allows flexibility for cultural and individual adaptation, for the accommodation to the varying needs of the affected parents, as well as to available local resources.
von der Hude K; Garten L
Children
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/10.3390/children10010038" target="_blank" rel="noreferrer noopener">10.3390/children10010038</a>
Overview of Perinatal Palliative Care in Brazil
quality of life; palliative care; Brazil; mothers; epidemiology; pregnancy; Chordata; eukaryotes; health care; Hominidae; Homo; human diseases; Latin America; mammals; man; primates; South America; vertebrates; birth; America; animals; neonates; epidemics; gestation; women; guidelines; recommendations; birth defects; Community of Portuguese Language Countries; congenital abnormalities; congenital malformations; drug abusers; drug users; high Human Development Index countries; malformations; microcephaly; upper-middle income countries
Significant attention to palliative care in terminally ill patients has only been effective in Brazil since the year 2000, although there have been isolated actions since the 1980s. When the case involves fetuses or neonates unable to cure, communication and care with the family members only received attention and effective organization starting in 2017. Notably in the years 2015 and 2016 there was an epidemic of microcephaly and along with the persistent crisis of drug users has raised the indices of malformations to a level higher than 3% of the world average. Here we aim the evaluation of: (a) social, educational and spiritual profile of the mothers; (b) structure of the specific teams related to palliative care in neonatology; (c) recommendations and protocols currently used in the country. The method used is an electronic retrospective on databases and government data; evaluation of the location and composition of palliative care teams in the country. The data found clearly point out that for Brazilian women, the characteristics of regionality in the country, educational level, religiousness and quality of life directly influence pregnancy and the acceptance or not of the possibility of death, directly influencing perinatal palliative care, which, by the way, is still developing methodologies for this type of action.
Saffi Junior MC; de Moraes AMSM; Favero GM
Brazilian Archives of Biology and Technology
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/10.1590/1678-4324-2022210615" target="_blank" rel="noreferrer noopener">10.1590/1678-4324-2022210615</a>