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perinatal palliative care

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
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
Brian S Carter
No abstract text is available yet for this article.
November 2016: Acta Paediatrica
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
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...
September 28, 2016: Archives of Disease in Childhood
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...
September 16, 2016: Archives of Disease in Childhood. Fetal and Neonatal Edition
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
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...
September 7, 2016: ANS. Advances in Nursing Science
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)...
August 25, 2016: Journal of Palliative Medicine
Rana Limbo, Charlotte Wool
No abstract text is available yet for this article.
September 2016: Journal of Obstetric, Gynecologic, and Neonatal Nursing: JOGNN
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
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
Lisa C Lindley, Melanie J Cozad
OBJECTIVE: To examine the relationship between nurse knowledge, work environment, and registered nurse (RN) turnover in perinatal hospice and palliative care organizations. METHODS: Using nurse intellectual capital theory, a multivariate analysis was conducted with 2007 National Home and Hospice Care Survey data. RESULTS: Perinatal hospice and palliative care organizations experienced a 5% turnover rate. The professional experience of advanced practice nurses (APNs) was significantly related to turnover among RNs (β = -...
May 17, 2016: American Journal of Hospice & Palliative Care
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...
May 26, 2016: Journal of Maternal-fetal & Neonatal Medicine
Anupama Nair, Sitaraman Radhakrishnan, Krishna S Iyer
The Fontan connection, originally described in 1971, is used to provide palliation for patients with many forms of CHDs that cannot support a biventricular circulation. An increasing number of females who have undergone these connections in childhood are now surviving into adulthood and some are becoming pregnant. We report a case of a 29-year-old woman who presented with a twin pregnancy at 33 weeks of gestation. She had significant deterioration of her cardiovascular status before the twin babies were delivered by emergency caesarean section owing to associated obstetric complications...
August 2016: Cardiology in the Young
Stephanie Lynema, Carlen G Fifer, Naomi T Laventhal
For premature infants with congenital heart disease (CHD), it may be unclear when the burdens of treatment outweigh potential benefits. Parents may thus have to choose between comfort care at birth and medical stabilization until surgical repair is feasible. Better defined outcome data, including risk factors for mortality, are needed to counsel expectant parents who are considering intensive care for premature infants with CHD. We sought to evaluate outcomes in this population to inform expectant parents considering intensive versus palliative care at birth...
June 2016: Pediatric Cardiology
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
Charlotte Wool, Leila E Kozak, Lisa C Lindley
Increasingly, patients and clinicians are considering palliative care interventions during pregnancy for the maternal-fetal dyad, when a life-limiting diagnosis is confirmed. Nurses are at the forefront of providing hospice and palliative care that includes planning interventions for infants nearing the end of life. However, little is known about the work environment facilitators to the availability of complementary and alternative medicine (CAM) therapies. Using a national database of perinatal hospice and palliative care providers, we described the types of CAM therapies available and explored the influence of the nurse work environment on the availability of CAM therapies with multivariate regression analysis...
October 2015: Journal of Hospice and Palliative Nursing: JHPN
Patricia Grether, Rubén Lisker, Alvar Loria, Asunción Álvarez-del-Río
OBJECTIVE: To examine the opinions of a perinatal health team regarding decisions related to late termination of pregnancy and severely ill newborns. MATERIALS AND METHODS: An anonymous questionnaire was administered to physicians, social workers, and nurses in perinatal care. Differences were evaluated using the chi square and Student's t tests. RESULTS: When considering severely ill fetuses and newborns, 82% and 93% of participants, respectively, opted for providing palliative care, whereas 18% considered feticide as an alternative...
November 2015: Salud Pública de México
Alisa Jivraj, Angie Scales, Joe Brierley
AIM: Following the elective ventilation and referral for organ donation of an infant with anencephaly, we sought local perinatal professionals' views of this practice. METHODS: Anonymous online survey: demographics, ethical viewpoints and potential public/maternal perceptions (standard 5-part Likert scale and free text). RESULTS: HASH(0x463e058) DEMOGRAPHICS: 49 replies (38 female): 4 obstetricians, 14 neonatologists, 6 foetal clinicians, 23 nurses, 1 anaesthetist and 1 reproductive specialist...
May 2016: Acta Paediatrica
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