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perinatal palliative care

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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
#1
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
#2
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
#3
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...
January 13, 2017: Current Opinion in Pediatrics
https://www.readbyqxmd.com/read/28041869/-palliative-care-after-neonatal-intensive-care-contributions-of-leonetti-law-and-remaining-challenges
#4
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
#5
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
#6
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
#7
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
#8
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
#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...
October 11, 2016: 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/27683508/using-agency-nurses-to-fill-rn-vacancies-within-specialized-hospice-and-palliative-care
#12
Melanie J Cozad, Lisa C Lindley, Sandy J Mixer
The use of agency nurses offers flexibility in filling registered nurse (RN) openings during times of shortage, yet little is known about their use in specialized palliative care. In an effort to fill this knowledge gap, this study determined whether significant relationships existed between full-time and part-time RN vacancies and the use of agency RNs within specialized hospices that deliver perinatal end-of-life care to women and their families in the event of miscarriage, ectopic pregnancy, or other neonatal complications resulting in death...
August 2016: Policy, Politics & Nursing Practice
https://www.readbyqxmd.com/read/27682139/how-many-children-and-young-people-with-life-limiting-conditions-are-clinically-unstable-a-national-data-linkage-study
#13
Stuart Jarvis, Roger C Parslow, Pat Carragher, Bryony Beresford, Lorna K Fraser
OBJECTIVE: To determine the clinical stage (stable, unstable, deteriorating or dying) for children and young people (CYP) aged 0-25 years in Scotland with life-limiting conditions (LLCs). DESIGN: National cohort of CYP with LLCs using linked routinely collected healthcare data. SETTING: Scotland. PATIENTS: 20 436 CYP identified as having LLCs and resident in Scotland between 1 April 2009 and 31 March 2014. MAIN OUTCOME: Clinical stage based on emergency inpatient and intensive care unit admissions and date of death...
February 2017: Archives of Disease in Childhood
https://www.readbyqxmd.com/read/27638112/antenatal-palliative-care-consultation-implications-for-decision-making-and-perinatal-outcomes-in-a-single-centre-experience
#14
Stephanie Kukora, Nathan Gollehon, Naomi Laventhal
BACKGROUND: Some pregnant patients with complex fetal anomalies meet with paediatric palliative care subspecialists prior to delivery, but referral to antenatal palliative care consultation (APCC) is not standard. Little is known about its role in perinatal decision-making. METHODS: A single-centre retrospective cohort study was undertaken for patients referred for outpatient antenatal counselling by a neonatologist over a two-and-half-year period. Patients also receiving APCC were compared with infants with similar prognoses who did not...
January 2017: Archives of Disease in Childhood. Fetal and Neonatal Edition
https://www.readbyqxmd.com/read/27610193/children-s-palliative-care-now-highlights-from-the-second-icpcn-conference-on-children-s-palliative-care-18-21-may-2016-buenos-aires-argentina
#15
J Downing, R Kiman, S Boucher, B Nkosi, B Steel, C Marston, E Lascar, J Marston
The International Children's Palliative Care Network held its second international conference on children's palliative care in Buenos Aires, Argentina, from the 18th-21st May 2016. The theme of the conference was 'Children's Palliative Care…. Now!' emphasising the need for palliative care for children now, as the future will be too late for many of them. Six pre-conference workshops were held, addressing issues connected to pain assessment and management, adolescent palliative care, ethics and decision-making, developing programmes, the basics of children's palliative care, and hidden aspects of children's palliative care...
2016: Ecancermedicalscience
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
#16
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
#17
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
#18
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
#19
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/27312333/trisomy-18-a-survey-of-opinions-attitudes-and-practices-of-neonatologists
#20
Adam P Jacobs, Akila Subramaniam, Ying Tang, Joseph B Philips, Joseph R Biggio, Rodney K Edwards, Nathaniel H Robin
We conducted a survey-based study of the opinions, attitudes, and management practices of neonatologists across the United States regarding prenatally diagnosed Trisomy 18. The survey was designed based on previously validated surveys of severe fetal anomalies and collected demographic information on participants, as well as their attitudes, and management choices given a series of vignettes beginning in the prenatal period. The survey was sent to 3,143 American Academy of Pediatrics Section on Neonatal-Perinatal Medicine members of which 409 (13%) completed the survey...
October 2016: American Journal of Medical Genetics. Part A
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