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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/28602660/a-proposed-model-for-perinatal-palliative-care
#3
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
#4
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/28476218/-bioethics-in-end-of-life-decisions-in-neonatology-unresolved-issues
#5
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
#6
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
#7
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
#8
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/27849163/fifteen-minute-consultation-perinatal-palliative-care
#9
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
#10
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
https://www.readbyqxmd.com/read/27726193/more-than-medication-perinatal-palliative-care
#11
EDITORIAL
Brian S Carter
No abstract text is available yet for this article.
November 2016: Acta Paediatrica
https://www.readbyqxmd.com/read/27608148/quality-indicators-and-parental-satisfaction-with-perinatal-palliative-care-in-the-intrapartum-setting-after-diagnosis-of-a-life-limiting-fetal-condition
#12
Charlotte Wool, Beth Perry Black, Anne B Nancy Woods
Measurement of quality indicators (QIs) in perinatal palliative care has not been addressed. Parents who chose to continue pregnancy after a diagnosis of a life-limiting fetal condition described perceptions of quality care and their satisfaction with care. This research identified which QIs explained parental satisfaction. High QI scores are associated with parental satisfaction. Parents who were satisfied reported 2.9 times the odds that their baby was treated with dignity and respect and 3.4 times the odds their medical care was addressed...
October 2016: ANS. Advances in Nursing Science
https://www.readbyqxmd.com/read/27559768/a-survey-of-perinatal-palliative-care-programs-in-the-united-states-structure-processes-and-outcomes
#13
Erin Denney-Koelsch, Beth Perry Black, Denise Côté-Arsenault, Charlotte Wool, Sujeong Kim, Karen Kavanaugh
BACKGROUND: Perinatal palliative care (PPC) programs are proliferating nationwide, but little is known about their structure, process, or desired outcomes, to inform future program development. OBJECTIVE: To explicate structure, processes, and outcomes of PPC programs, specifically how they coordinate care and manage goals of care meetings, as well as providers' perceptions of the most beneficial components of care and their expected care outcomes. DESIGN: Free-text response data were taken from a 48-item online survey organized around the eight domains defined by the National Consensus Project for Quality Palliative Care (NCP)...
October 2016: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/27497619/perinatal-palliative-care
#14
EDITORIAL
Rana Limbo, Charlotte Wool
No abstract text is available yet for this article.
September 2016: Journal of Obstetric, Gynecologic, and Neonatal Nursing: JOGNN
https://www.readbyqxmd.com/read/27472997/-perinatal-palliative-care-in-france-who-why-how
#15
B Tosello
Severe congenital or morphologic anomalies are one of the main causes of infant morbidity and mortality. Some of these prenatally-diagnosed pathologies are incompatible with postnatal survival. In this context, some women choose to continue with pregnancy. Subsequently, perinatal palliative care seems to be a constructive answer to offer in such situations. At international level, this is a new clinical practice where decision dilemmas exist (prognostic uncertainty, prolonged survival, and attachment to the infant)...
September 2016: Archives de Pédiatrie: Organe Officiel de la Sociéte Française de Pédiatrie
https://www.readbyqxmd.com/read/27150239/lethal-fetal-abnormalities-how-to-approach-perinatal-palliative-care
#16
MULTICENTER STUDY
Barthélémy Tosello, Grace Haddad, Catherine Gire, Marie-Ange Einaudi
OBJECTIVE: Some of the antenatally diagnosed fetal pathologies are unlikely to get compatible with life. Still some women choose to continue with pregnancy. Subsequently, perinatal palliative care (PPC) has become a constructive demarche in such situations. Our study, based on a multicentric survey, reports some cases of fetal pathologies considered as lethal according to perinatal professionals and reveals the decisional process in each case. METHODS: We sent by emails a questionnaire to 434 maternal-fetal medicine specialists and fetal care pediatric specialists at 48 multidisciplinary centers for prenatal diagnosis...
March 2017: Journal of Maternal-fetal & Neonatal Medicine
https://www.readbyqxmd.com/read/26954999/-have-no-regrets-parents-experiences-and-developmental-tasks-in-pregnancy-with-a-lethal-fetal-diagnosis
#17
Denise Côté-Arsenault, Erin Denney-Koelsch
SIGNIFICANCE: Lethal fetal diagnoses are made in 2% of all pregnancies. The pregnancy experience is certainly changed for the parents who choose to continue the pregnancy with a known fetal diagnosis but little is known about how the psychological and developmental processes are altered. METHODS: This longitudinal phenomenological study of 16 mothers and 14 fathers/partners sought to learn the experiences and developmental needs of parents who continue their pregnancy despite the lethal diagnosis...
April 2016: Social Science & Medicine
https://www.readbyqxmd.com/read/26652200/provision-of-services-in-perinatal-palliative-care-a-multicenter-survey-in-the-united-states
#18
MULTICENTER STUDY
Charlotte Wool, Denise Côté-Arsenault, Beth Perry Black, Erin Denney-Koelsch, Sujeong Kim, Karen Kavanaugh
BACKGROUND: Congenital anomalies account for 20% of neonatal and infant deaths in the United States. Perinatal palliative care is a recent addition to palliative care and is meant to meet the needs of families who choose to continue a pregnancy affected by a life-limiting diagnosis. OBJECTIVE: To examine characteristics of programs and services provided, assess alignment with the National Consensus Project domains of care, and identify providers and disciplines involved in programs...
March 2016: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/26597801/recommendations-for-palliative-and-bereavement-care-in-the-nicu-a-family-centered-integrative-approach
#19
REVIEW
C Kenner, J Press, D Ryan
Technological advances have increased our ability to detect a life-threatening, life-limiting or lethal problem early in pregnancy, leaving parents months to anticipate a death or a prematurely born infant. Babies can also be born with unanticipated problems that could lead to death. In either scenario, perinatal palliative care should be offered as a strategy for family support. Since the preponderance of professional training focuses on saving lives, many health professionals are uncomfortable with palliative care...
December 2015: Journal of Perinatology: Official Journal of the California Perinatal Association
https://www.readbyqxmd.com/read/26412272/the-relationship-between-the-nursing-environment-and-delivering-culturally-sensitive-perinatal-hospice-care
#20
Sandra J Mixer, Lisa Lindley, Heather Wallace, Mary Lou Fornehed, Charlotte Wool
BACKGROUND: Wide variations exist among perinatal hospices, and barriers to perinatal palliative care exist at the healthcare level. Research in the area of culturally sensitive perinatal palliative care has been scarce, a gap which this study addresses. OBJECTIVE: To evaluate the relationship between the nurse work environment and the delivery of culturally sensitive perinatal hospice care. METHOD: This retrospective, correlational study used data from the National Home and Hospice Care Survey, which includes a nationally representative sample of hospice care providers...
September 2015: International Journal of Palliative Nursing
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