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https://www.readbyqxmd.com/read/29656674/psycho-social-approach-of-perinatal-palliative-care
#1
Barthélémy Tosello, Lionel Dany
The diagnosis of some of these antenatal pathologies is difficult to reconcile with post-natal survival. Indeed, the diagnosis and management of pregnancies complicated by lethal fetal abnormalities (LFA) pose a challenge for both the parents and the clinicians. The practices discussed are characterized by the multiple challenges involved (on professional, informational, human, and ethical levels) and question the necessity and validity of a multidisciplinary approach. Revealing professional experiences and practices and the biopsychosocial processes behind them could prove useful in advancing attitudes toward LFA, how it is managed, and the care options available...
April 15, 2018: Journal of Maternal-fetal & Neonatal Medicine
https://www.readbyqxmd.com/read/29566441/all-cause-mortality-rates-and-home-deaths-decreased-in-children-with-life-limiting-diagnoses-in-denmark-between-1994-and-2014
#2
Camilla Lykke, Ola Ekholm, Kjeld Schmiegelow, Marianne Olsen, Per Sjøgren
AIM: Specialised paediatric palliative care has not previously been a priority in Denmark. The aim of this study was to support its development and organisation, by examining why and where children died using official national data for 1994-2014. METHODS: We obtained data on 9,462 children who died before the age of 18 from the Danish Register of Causes of Death. The causes of deaths were listed according to the codes in the International Classification of Diseases...
March 22, 2018: Acta Paediatrica
https://www.readbyqxmd.com/read/29414846/pediatric-palliative-care-in-infants-and-neonates
#3
REVIEW
Brian S Carter
The application of palliative and hospice care to newborns in the neonatal intensive care unit (NICU) has been evident for over 30 years. This article addresses the history, current considerations, and anticipated future needs for palliative and hospice care in the NICU, and is based on recent literature review. Neonatologists have long managed the entirety of many newborns' short lives, given the relatively high mortality rates associated with prematurity and birth defects, but their ability or willingness to comprehensively address of the continuum of interdisciplinary palliative, end of life, and bereavement care has varied widely...
February 7, 2018: Children
https://www.readbyqxmd.com/read/29331534/perinatal-palliative-care-integration-in-a-united-states-nurse-midwifery-education-program
#4
Jenna A LoGiudice, Eileen O'Shea
Midwifery students with perinatal palliative care education develop a skillset to provide holistic midwifery care to women and families who are experiencing stillbirth or life-limiting fetal diagnoses. This paper presents a model of perinatal palliative care in a United States midwifery education program. By utilizing evidence based practices and national programs, perinatal palliative care can be threaded through midwifery curricula to achieve international standards of practice and competencies. Most importantly, enhancing perinatal palliative care education will better prepare future midwives for when a birth outcome is not what was expected at the outset of a pregnancy...
March 2018: Midwifery
https://www.readbyqxmd.com/read/29179003/facilitating-milk-donation-in-the-context-of-perinatal-palliative-care
#5
Joanna C M Cole, Jessica Schwarz, Mari-Carmen Farmer, Aimee L Coursey, Shawnese Duren, Marisa Rowlson, Judy Prince, Maren Oser, Diane L Spatz
The option to donate milk within the context of perinatal palliative care allows pregnant women to be involved in medical decision making before birth. In this article we examine how a perinatal bereavement program engages women and families in the process of milk donation when the deaths of their newborns are anticipated. We include two case examples to offer insight into the complexities within the patient experience of milk donation after perinatal loss.
November 24, 2017: Journal of Obstetric, Gynecologic, and Neonatal Nursing: JOGNN
https://www.readbyqxmd.com/read/29129740/survey-on-neonatal-end-of-life-comfort-care-guidelines-across-america
#6
Shelly Haug, Sara Farooqi, Christopher G Wilson, Andrew Hopper, Grace Oei, Brian Carter
CONTEXT: Infants of age less than one year have the highest mortality rate in pediatrics. The American Academy of Pediatrics published guidelines for palliative care in 2013; however, significant variation persists among local protocols addressing neonatal comfort care at the end-of-life (EOL). OBJECTIVES: The purpose of this study was to evaluate current neonatal EOL comfort care practices and clinician satisfaction across America. METHODS: After institutional review board approval (516005), an anonymous, electronic survey was sent to members of the American Academy of Pediatrics Section on Neonatal-Perinatal Medicine...
March 2018: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/29122828/referrals-to-a-perinatal-specialist-palliative-care-consult-service-in-ireland-2012-2015
#7
Des L McMahon, Marie Twomey, Maeve O'Reilly, Mary Devins
OBJECTIVE: To analyse the referral patterns of perinatal patients referred to a specialist palliative care service (SPCS), their demographics, diagnoses, duration of illness, place of death and symptom profile. DESIGN: A retrospective chart review of all perinatal referrals over a 4-year period to the end of 2015. SETTING: A consultant-led paediatric SPCS at Our Lady's Children's Hospital, Crumlin, Dublin, and the Coombe Women & Infants University Hospital, Dublin...
November 9, 2017: Archives of Disease in Childhood. Fetal and Neonatal Edition
https://www.readbyqxmd.com/read/29057694/early-unexpected-diagnosis-of-fetal-life-limiting-malformation-antenatal-palliative-care-and-parental-decision
#8
Federico Mariona, Marianne Burnett, Melody Zoma, Janice Blake, Hanna Khouri
INTRODUCTION: Conjoined twins are an infrequent occurrence in obstetric practice. Live-conjoined twins on a late preterm triplet pregnancy is an even rarer event. OBJECTIVE: The objective of this study is to emphasize the critical importance of perinatal palliative care and non-directive parental counseling, informed decision making and respect for autonomy following full disclosure of findings, fetal life-limiting diagnosis, treatment alternatives, maternal-fetal potential complications, and most likely perinatal outcomes...
November 2, 2017: Journal of Maternal-fetal & Neonatal Medicine
https://www.readbyqxmd.com/read/28916237/ethics-and-palliative-care-in-the-perinatal-world
#9
REVIEW
Colleen M Marty, Brian S Carter
The perinatal world is unique in its dutiful consideration of two patients along the lines of decision-making and clinical management - the fetus and the pregnant woman. The potentiality of the fetus-newborn is intertwined with the absolute considerations for the woman as autonomous patient. From prenatal diagnostics, which may be quite extensive, to potential interventions prenatally, postnatal resuscitation, and neonatal management, the fetus and newborn may be anticipated to survive with or without special needs and technology, to have a questionable or guarded prognosis, or to live only minutes to hours...
February 2018: Seminars in Fetal & Neonatal Medicine
https://www.readbyqxmd.com/read/28755800/-parental-mourning-after-a-perinatal-loss
#10
I de Mézerac, L Caeymaex
The loss of a close friend or relative is always an ordeal. When this loved one is a baby, born or even unborn, a number of specific aspects have been reported by parents and researchers. The specificities of perinatal mourning have been progressively recognized since the 1970s, with increasing literature on this topic. Its complexity should be acknowledged by healthcare professionals who cope with perinatal loss, to allow them to offer adapted familial support. This paper is written by a mother, a founding member of a French nonprofit organization supporting parents in case of a prenatal or postnatal life-limiting disorder (Association SPAMA, soins palliatifs et accompagnement en maternité) with an internet support forum and a neonatologist involved in research with parents after the loss of their baby...
July 26, 2017: Archives de Pédiatrie: Organe Officiel de la Sociéte Française de Pédiatrie
https://www.readbyqxmd.com/read/28695618/quality-predictors-of-parental-satisfaction-after-birth-of-infants-with-life-limiting-conditions
#11
Charlotte Wool, Victoria J Kain, Joana Mendes, Brian S Carter
AIM: This study examines parental satisfaction with care received in the context of a life-limiting foetal diagnosis and subsequent birth. METHODS: Survey methods were utilised to embed the Quality Indicators (QI) and Parental Satisfaction of Perinatal Palliative Care Instrument in a survey: 'The Voice of Parents'. RESULTS: The web-based survey had a final sample of N = 405 parent responders. Overall, parents reported satisfaction with care (80...
February 2018: Acta Paediatrica
https://www.readbyqxmd.com/read/28695444/severe-fetal-abnormality-and-outcomes-of-continued-pregnancies-a-french-multicenter-retrospective-study
#12
Marine Bourdens, Julie Tadonnet, Laura Hostalery, Laurent Renesme, Barthélémy Tosello
Objectives To describe a population choosing to continue with their pregnancy despite being eligible to receive a medical termination of pregnancy (TOP). Methods Nine-year retrospective study of data (01/01/2006 to 31/12/2014) from three French prenatal diagnostic centers describing the perinatal outcomes of these pregnancies. Pregnancies were classified according to etiology and severity of its fetal pathology. Several perinatal parameters were described: maternal characteristics, parental prenatal choices and information on the pregnancy and neonatal outcomes...
October 2017: Maternal and Child Health Journal
https://www.readbyqxmd.com/read/28604213/updated-perinatal-palliative-standards-emphasise-choice-and-bereavement-support
#13
Nick Evans
Ana Todorovic's baby, Nadia, died just before birth. Ana says she received excellent care and was told when 37 weeks pregnant that Nadia was not going to survive for long.
June 12, 2017: Nursing Children and Young People
https://www.readbyqxmd.com/read/28602660/a-proposed-model-for-perinatal-palliative-care
#14
Joanna C M Cole, Julie S Moldenhauer, Tyra R Jones, Elizabeth A Shaughnessy, Haley E Zarrin, Aimee L Coursey, David A Munson
Perinatal palliative care allows for an active partnership among a pregnant woman, her family, and her multidisciplinary treatment team and addresses her specialized medical care, emotional, social, and familial needs when a life-limiting fetal diagnosis is confirmed. The purpose of this article is to highlight the multidisciplinary care model used within a perinatal palliative care program. A case study provides a unique perspective on support needed for parents who anticipate that their newborn may die before or shortly after birth...
November 2017: Journal of Obstetric, Gynecologic, and Neonatal Nursing: JOGNN
https://www.readbyqxmd.com/read/28595435/a-fetal-diagnostic-center-s-referral-rate-for-perinatal-palliative-care
#15
Krishelle L Marc-Aurele, Andrew D Hull, Marilyn C Jones, Dolores H Pretorius
BACKGROUND: Fetal specialists support standardizing the practice of offering women palliative care for life limiting fetal diagnoses. However, there is little data available regarding what fetal specialists do in practice. Since 2003, our center has kept a database of all women referred for fetal complications. METHODS: Retrospective electronic chart review of pregnant women between 2006 and 2012 using UCSD's Fetal Care and Genetics Center referral database. Objectives were to determine: (I) how many high risk pregnancies referred to the University of California San Diego Medical Center (UCSD) over a 6-year period have potentially life limiting fetal diagnoses; (II) pregnancy outcome; and (III) referral rate to perinatal palliative care...
May 4, 2017: Annals of Palliative Medicine
https://www.readbyqxmd.com/read/28593770/-retrospective-analysis-of-monochorionic-twin-pregnancies-born-in-the-institute-for-the-care-of%C3%A2-mother-and-child-between-2012-2015
#16
K Běhávková, L Krofta, K Macková, J Vojtěch, L Hašlík, R Pock, L Hympánová, M Kučerová, H Heřman, Z Straňák, J Feyereisl
OBJECTIVE: The purpose of this study was to describe monochorionic twin pregnancies and their complications, born between 24th and 37th week of gestation in the Institute for the Care of Mother and Child in years 2012-2015. DESIGN: Retrospective cohort. SETTING: The Institute for the Care of Mother and Child, Praha. METHODS: From 2012 to 2015 we observed 177 monochorionic twin pregnancies from which two or one viable fetuses were born, or both fetuses died in utero...
2017: Ceská Gynekologie
https://www.readbyqxmd.com/read/28476218/-bioethics-in-end-of-life-decisions-in-neonatology-unresolved-issues
#17
Juan Arnaez, Juan Carlos Tejedor, Sonia Caserío, María Teresa Montes, María Teresa Moral, Javier González de Dios, Alfredo García-Alix
This document is the result of previous work carried out by different expert groups and submitted to multidisciplinary debate at a Conference about controversial, deficient, or new aspects in the field of neonatal palliative care, such as: 1) the deliberative decision-making process, 2) hospital and domiciliary palliative care, 3) donation after controlled cardiac death, and 4) moral stress in professionals. The most relevant conclusions were: the need to instruct professionals in bioethics and in the deliberative method to facilitate thorough and reasonable decision-making; the lack of development in the field of perinatal palliative care and domiciliary palliative care in hospitals that attend newborns; the need to provide neonatal units with resources that help train professionals in communication skills and in the management of moral distress, as well as delineate operational procedure and guidelines for neonatal organ donation...
December 2017: Anales de Pediatría: Publicación Oficial de la Asociación Española de Pediatría (A.E.P.)
https://www.readbyqxmd.com/read/28390923/ethical-considerations-in-perinatal-palliative-care
#18
REVIEW
Joana Mendes, Jesse Wool, Charlotte Wool
Clinicians may face new ethical considerations when parents continue pregnancies after receiving life-limiting fetal diagnoses and desire palliative care. In this article we present four ethical considerations in perinatal palliative care: ambiguous terminology in relation to diagnosis or prognosis, differences between bereavement support and palliative care, neonatal organ donation, and postdeath cooling. In this article, we enable readers to consider current topics from different perspectives and reflect on care when confronted with sensitive clinical scenarios...
May 2017: Journal of Obstetric, Gynecologic, and Neonatal Nursing: JOGNN
https://www.readbyqxmd.com/read/28332892/outcomes-in-continuing-pregnancies-diagnosed-with-a-severe-fetal-abnormality-and-implication-of-antenatal-neonatology-consultation-a-10-year-retrospective-study
#19
Laura Hostalery, Barthélémy Tosello
PURPOSE: To describe a population choosing to continue their pregnancy despite a severe fetal abnormality and to evaluate the role of antenatal neonatology consultation in perinatal decision-making. METHODS: A 10-year (2005-2015) retrospective descriptive study in a single Multidisciplinary Prenatal Diagnosis Center in South France. A series of pregnancies with severe fetal abnormalities were collected by a person outside the decision making process and/or the child's care...
June 2017: Fetal and Pediatric Pathology
https://www.readbyqxmd.com/read/28238454/moving-toward-a-shared-process-the-impact-of-parent-experiences-on-perinatal-palliative-care
#20
Susan L Hasegawa, Jessica T Fry
Perinatal palliative care programs seek to support parents expecting a baby diagnosed with a serious medical condition. Clinicians have increasingly recognized the importance of parental perspectives on the medical care mothers and their fetuses and live-born children receive, especially regarding factors influencing individual choices and knowledge of the medical community. We describe, using literature on trisomy 13 and trisomy 18, how information shared between parents and providers can improve perinatal counseling and family support...
March 2017: Seminars in Perinatology
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