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perinatal palliative care

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https://www.readbyqxmd.com/read/28695618/quality-predictors-of-parental-satisfaction-after-birth-of-infants-with-life-limiting-conditions
#1
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 fetal diagnosis and subsequent birth. METHODS: Survey methods were utilized 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...
July 11, 2017: Acta Paediatrica
https://www.readbyqxmd.com/read/28695444/severe-fetal-abnormality-and-outcomes-of-continued-pregnancies-a-french-multicenter-retrospective-study
#2
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...
July 10, 2017: Maternal and Child Health Journal
https://www.readbyqxmd.com/read/28604213/updated-perinatal-palliative-standards-emphasise-choice-and-bereavement-support
#3
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
#4
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...
June 8, 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
#5
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
#6
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
#7
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...
May 2, 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
#8
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
#9
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
#10
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
https://www.readbyqxmd.com/read/28140755/when-one-knows-a-fetus-is-expected-to-die-palliative-care-in-the-context-of-prenatal-diagnosis-of-fetal-malformations
#11
Taisa Rocha Catania, Lisandra Stein Bernardes, Glaucia Rosana Guerra Benute, Maria Augusta Bento Cicaroni Gibeli, Nathalia Bertolassi do Nascimento, Tercilia Virginia Aparecida Barbosa, Vera Lucia Jornada Krebs, Rossana P V Francisco
BACKGROUND: Fetal malformations occur in 2% of gestations and are the fifth most common cause of neonatal death in the world. In many cases, fetal malformations result in neonatal death or long stay in intensive care facilities. Families that continue the pregnancy in such a situation need to make choices and cope with an overwhelming number of potential issues. Palliative care starting at the prenatal period is a growing field that allows the entire family to prepare for this difficult situation...
January 31, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28129658/-dying-at-life-s-beginning
#12
Franziska Frank, Franziska Maurer, Jessica Pehlke-Milde, Valerie Fleming
Aim: When parents-to-be are faced with a terminal prenatal diagnosis, they are confronted with the decision either to continue the pregnancy or to terminate it at an advanced stage. This difficult decision is intimately affected by the experience of the inevitability of loss, and ethical dilemmas posed in this usually completely unexpected situation. Studies indicate that perinatal child loss due to lethal foetal anomalies is a major life event and a source of serious psychological issues, which can last for many years after the experience...
January 27, 2017: Das Gesundheitswesen
https://www.readbyqxmd.com/read/28092282/neonatal-palliative-care
#13
Elvira Parravicini
PURPOSE OF REVIEW: A significant number of newborns are affected by life-limiting or life-threatening conditions. When prolongation of survival is no longer a goal, or prognosis is uncertain, a plan of care focused on the infant's comfort is essential. The aim of this article is to review the most recent and relevant literature regarding neonatal palliative care (NPC). RECENT FINDINGS: A variety of perinatal and NPC programs are described, but most programs focus exclusively on end-of-life care...
April 2017: Current Opinion in Pediatrics
https://www.readbyqxmd.com/read/28041869/-palliative-care-after-neonatal-intensive-care-contributions-of-leonetti-law-and-remaining-challenges
#14
P Kuhn, L Dillenseger, N Cojean, B Escande, C Zores, D Astruc
The 2005 enactment of the "Patients' rights and end-of-life care" act, known as the Leonetti law, has been accompanied by practical changes in the processes of withdrawal and withholding of active life-sustaining treatments. This law has also promoted the implementation of palliative care in perinatal medicine to avoid unreasonable therapeutic interventions and to preserve the dying patient's quality of life and human dignity. Recently, a new law has been voted by the French National Assembly and new reflections on the ethical aspects of the end of life in neonatal medicine should resume again within the French Society of Neonatology in the working group on ethical issues in neonatology...
February 2017: Archives de Pédiatrie: Organe Officiel de la Sociéte Française de Pédiatrie
https://www.readbyqxmd.com/read/28025631/amniotic-band-syndrome-perinatal-hospice-and-palliative-care-versus-active-management
#15
Shadi Rezai, Justin Faye, Annika Chadee, Sri Gottimukkala, Ruchi Upadhyay, Carla Lara, Benamanahalli H Rajegowda, Andrew D Corwin, Rasila V Lala, Jessica Vernon, Dilfuza Nuritdinova, Stephen Chasen, Cassandra E Henderson
Introduction. Amniotic band syndrome and sequence are a relatively rare condition in which congenital anomalies occur as a result of the adherence and entrapment of fetal parts with coarse fibrous bands of the amniotic membrane. A large percentage of reported cases have an atypical gestational history. The frequency of this obstetric complication is not affected by fetal gender, genetic abnormality, or prenatal infection. Case. A 21-year-old, G1P0 female parturient at 18 weeks and 5 days with a single intrauterine gestation during a routine ultrasound evaluation was noted to have amniotic band sequence...
2016: Case Reports in Obstetrics and Gynecology
https://www.readbyqxmd.com/read/28018868/pediatric-palliative-care-in-canada-in-2012-a-cross-sectional-descriptive-study
#16
Kimberley Widger, Dawn Davies, Adam Rapoport, Christina Vadeboncoeur, Stephen Liben, Amrita Sarpal, Simone Stenekes, Claude Cyr, Lysanne Daoust, Marie-Claude Grégoire, Marli Robertson, Heather Hodgson-Viden, Julie Laflamme, Harold Siden
BACKGROUND: Pediatric palliative care focuses on comprehensive symptom management and enhancing quality of life for children with life-threatening conditions and their families. Our aim was to describe Canadian programs that provided specialized pediatric palliative care in 2012 and the children who received it and to estimate the proportion of children who might benefit that received specialized care. METHODS: A cross-sectional descriptive design was used. Specialized pediatric palliative care programs were included in the study if they offered multidisciplinary consulting pediatric palliative care services to a wide range of children and served all populations of children with life-threatening illness regardless of diagnosis...
October 2016: CMAJ Open
https://www.readbyqxmd.com/read/28007510/-palliative-care-for-newborn-infants-with-congenital-malformations-or-genetic-abnormalities
#17
M-L Viallard, G Moriette
The choice of palliative care can be made today in the perinatal period, as it can be made in children and adults. Palliative care, rather than curative treatment, may be considered in three clinical situations: babies born at the limits of viability, withholding/withdrawing treatments in the NICU, and babies with severe malformations of genetic abnormalities identified during pregnancy. Only the last situation is addressed hereafter. In newborn infants as in older patients, palliative care aims at taking care of the baby and at providing comfort and well-being...
February 2017: Archives de Pédiatrie: Organe Officiel de la Sociéte Française de Pédiatrie
https://www.readbyqxmd.com/read/27940700/acceptability-of-family-centered-advanced-care-planning-for-adolescents-with-hiv
#18
RANDOMIZED CONTROLLED TRIAL
Ronald H Dallas, Allison Kimmel, Megan L Wilkins, Sohail Rana, Ana Garcia, Yao I Cheng, Jichuan Wang, Maureen E Lyon
BACKGROUND AND OBJECTIVE: Small pilot studies support the appropriateness of engaging adolescents with chronic or life-limiting illnesses in pediatric advance care planning (pACP). We do not yet know if pACP is acceptable, feasible, and worthwhile, even if emotionally intense, in a fully powered randomized controlled trial. METHODS: We conducted a prospective 2-arm randomized controlled trial at 6 US urban hospitals. Adolescent/family member dyads were randomized to receive the 1-session-a-week 3-session FAmily-CEntered Advance Care Planning (FACE) pACP intervention (1, ACP Survey; 2, Goals of Care Conversation/Treatment Preferences; 3, Completion of Advance Directive) or active comparator (1, Developmental History; 2, Safety Tips; 3, Nutrition/Exercise)...
December 2016: Pediatrics
https://www.readbyqxmd.com/read/27849163/fifteen-minute-consultation-perinatal-palliative-care
#19
Peter Sidgwick, Emily Harrop, Brenda Kelly, Ana Todorovic, Dominic Wilkinson
Perinatal palliative medicine is an emerging subspecialty within paediatric palliative medicine, neonatal medicine, fetal medicine and obstetrics. It comprises patient-focused, non-judgemental shared decision making and aims to provide holistic multidisciplinary support for families. In this paper we define and describe one model for providing perinatal palliative care, drawing on the personal and professional experience of the authors.
November 14, 2016: Archives of Disease in Childhood. Education and Practice Edition
https://www.readbyqxmd.com/read/27726479/death-of-one-twin-during-the-perinatal-period-an-interpretative-phenomenological-analysis
#20
Sarah Meaney, Paul Corcoran, Keelin O'Donoghue
BACKGROUND: Perinatal death is one of the most difficult bereavements due to the shock and profound grief experienced by parents. It has been established that such bereavement has a life-lasting impact. Twin pregnancy is associated with increased perinatal risk, with higher rates of perinatal mortality than in singleton pregnancy. OBJECTIVES: To date, few studies have examined the effect of the loss of one twin diagnosed with a congenital abnormality during pregnancy...
March 2017: Journal of Palliative Medicine
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