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October 29, 2023: Nursing for Women's Health
#22
JOURNAL ARTICLE
Matthew Lin, Erin Rholl, Nickie Andescavage, Olivia Ackerman, Deborah Fisher, Ashley F Lanzel, Laila A Mahmood
BACKGROUND: Three percent of pregnancies are complicated by congenital anomalies. Prenatal integration of pediatric palliative care (PPC) may be hindered by non-standardized PPC referral processes. This quality improvement (QI) project aimed to improve prenatal PPC consultation using a diagnostic trigger list. MEASURES: Main outcome measure was the percentage of prenatal PPC consults completed based on diagnostic trigger list eligibility. Balancing measures included stakeholder perspectives on PPC consults and products...
October 17, 2023: Journal of Pain and Symptom Management
#23
JOURNAL ARTICLE
F T McCarthy, A Kenis, E Parravicini
Providing comfort while a patient is living with a life-limiting condition or at end of life is the hallmark of palliative care regardless of the patient's age. In perinatal palliative care, the patient is unable to speak for themselves. In this manuscript we will present guidelines garnered from the 15-year experience of the Neonatal Comfort Care Program at Columbia University Irving Medical Center, and how they provide care for families along the perinatal journey. We will describe essential tools and strategies necessary to consider in assessing and providing comfort to infants facing a life-limiting diagnosis in utero , born at the cusp of viability or critically ill where the burden of care may outweigh the benefit...
2023: Frontiers in Pediatrics
#24
Aleksandra Korzeniewska-Eksterowicz, Hanna Moczulska
Matthew-Wood syndrome (MWS) is a rare autosomal recessive disorder caused by pathogenic variants of the STRA6 gene. Several studies in the available literature comprise patients with pathogenic variants of gene STRA6 with various phenotypic expressions: from lethal forms of MWS to non-lethal anophthalmia. These reports mainly describe new pathogenic variants and phenotypic expression but do not describe medical or paramedical care for the affected families. In our case report, we describe the second case of MWS in the same family and the benefits of including the patient's family in the perinatal palliative care program...
October 4, 2023: Journal of Genetic Counseling
#25
EDITORIAL
Denise Côté-Arsenault
No abstract text is available yet for this article.
October 2023: Palliative Medicine
#26
JOURNAL ARTICLE
Karen L Shaw, J Spry, Carole Cummins, Andrew K Ewer, Mark D Kilby, Alexandra Mancini
BACKGROUND: Perinatal advance care planning (PnACP) is a process of formal decision-making to help families plan for their baby's care when recognised that they may have a life-limiting condition. While PnACP is recommended in policy, there is a lack of evidence to support implementation and development in the perinatal setting. OBJECTIVE: To conduct an online survey of UK and Ireland perinatal providers to examine how PnACP is operationalised in current practice...
September 14, 2023: Archives of Disease in Childhood. Fetal and Neonatal Edition
#27
Talib Al Harthy, Samantha Colaiacovo, Robert J Gratton, Kevin Coughlin, Victoria Mok Siu, Chitra Prasad, Charles Rupar, Maha Saleh
Non-immune hydrops is a prenatal finding which can occur due to an underlying genetic diagnosis such as common chromosomal aneuploidy (Trisomy 21, Turner syndrome etc.). It is extremely rare to have more than one genetic cause of hydrops fetalis in a single pregnancy. This report describes a dichorionic diamniotic pregnancy for a consanguineous couple where noninvasive prenatal testing was "high risk" for Trisomy 21. Family declined amniocentesis and opted for postnatal genetic testing. The pregnancy was later complicated with severe hydrops fetalis leading to demise for one of the twins, and a premature delivery of the other twin who had remarkable collodion not in keeping with Trisomy 21...
August 2023: Clinical Case Reports
#28
JOURNAL ARTICLE
Béatrice Boutillier, Nicholas D Embleton, Sophie Bélanger, Alexie Bigras-Mercier, Audrey Larone Juneau, Keith J Barrington, Annie Janvier
Introduction: In neonatology, multiple pregnancies are common. Unfortunately, it is not rare for one baby to die. Communication with parents in these circumstances has been demonstrated to be sub-optimal. Methods: Two educational programs were evaluated with pre- and post-course surveys, questionnaires administered to participants, and audits. Results: In the online Butterfly project (UK; n = 734 participants), all participants reported that the training exceeded or met their expectations, 97% reported they learned new skills, and 48% had already applied them...
August 18, 2023: Children
#29
JOURNAL ARTICLE
Ramy Abramsky, Zahr Alkhadem, Shelby Alsup, Tayyba Anwar, Monica Arroyo, Chiara Bonfanti, Martijn Boomsma, Vivian Boswinkel, Erwin Cabacungan, Taeun Chang, Cara Cimino, Susan Cohen, Irina Aura Cuzino, Linda de Vries, Jure Demšar, Jennifer DiPietro, Nihal Olgac Dündar, Defne Engur, Camilla Fontana, Monica Fumagalli, Silvana Gangi, Emily Garavatti, Raquel Garcia, Pinar Gencpinar, Cecelia Glennon, Miri Goldshtein, Bogdan Gont, Sofia Herrera, Magdalena Iriciuc, Alja Kavčič, Ruoying Penny Li, Courtney Lowe, Kyla Marks, Gerda Meijler, Sara Meloni, Analya Michaelovsky, Fabio Mosca, Ingrid Nijholt, Evelyn Farkash Novik, Rawad Obeid, Devlynne S Ondusko, Doreen Ozalvo, Nicola Pesenti, Brindusa Petcariu, Jillian Phillips, Matteo Porro, Emmeline Roth, Aneta Soltirovska Šalamon, Paola Schiavolin, Kristen Mackiewicz Seghete, Eilon Shany, Ilan Shelef, Muruvvet Elif Simsir, Anil Soykan, Adrian Ioan Toma, Tammy Tsuchida, Famke Van Erkel, Canberk Yilmaz, Ameed Zahalka, Irem Zengi
No abstract text is available yet for this article.
2023: Journal of Neonatal-perinatal Medicine
#30
JOURNAL ARTICLE
Sinead Brady, Elvira Parravicini, Charlotte Wool
BACKGROUND: The success of a training can be determined by the degree of learning transfer. To address a gap in educational offerings during the pandemic, an interdisciplinary team developed and offered a 3-day virtual course, called Next Level Perinatal Palliative Care Training. OBJECTIVE: This study aimed to evaluate the transfer of learning and practice from a virtual training course on perinatal/neonatal palliative care (PNPC) by a range of clinicians. STUDY DESIGN: A descriptive prospective survey design was used to collect data at two time points, immediately following the training course and 6 months later...
2023: Frontiers in Pediatrics
#31
REVIEW
Mahlet Abayneh, Sharla Rent, Peter Odion Ubuane, Brian S Carter, Solomie Jebessa Deribessa, Betelehem B Kassa, Atnafu Mekonnen Tekleab, Stephanie K Kukora
Worldwide, sub-Saharan Africa has the highest burden of global neonatal mortality (43%) and neonatal mortality rate (NMR): 27 deaths per 1,000 live births. The WHO recognizes palliative care (PC) as an integral, yet underutilized, component of perinatal care for pregnancies at risk of stillbirth or early neonatal death, and for neonates with severe prematurity, birth trauma or congenital anomalies. Despite bearing a disproportionate burden of neonatal mortality, many strategies to care for dying newborns and support their families employed in high-income countries (HICs) are not available in low-and-middle-income countries (LMICs)...
2023: Frontiers in Pediatrics
#32
JOURNAL ARTICLE
Urszula Tataj-Puzyna, Barbara Baranowska, Beata Szlendak, Magdalena Szabat, Maria Węgrzynowska
AIM: The aim of this study was to describe the unique experiences of parents facing a Life Limiting Fetal Conditions (LLFC) diagnosis, who chose to continue with their pregnancy, as they prepare for childbirth through individual and group prenatal education. DESIGN: A qualitative study. METHODS: We employed the phenomenological approach and the Colaizzi strategy to analyse semi-structured interviews. Thirteen persons were interviewed. The participants were couples (n = 6) and women (n = 7) who received LLFC and were preparing for birth...
June 30, 2023: Nursing Open
#33
REVIEW
Abdullah B Shoaib, Marissa Vawter-Lee, Charu Venkatesan, Ayman F Soliman
Muslims comprise nearly a quarter of the worldwide population, with significant populations in the United States, Canada, and Europe. As clinicians, it is important to be familiar with Islamic religious and cultural perspectives on medical treatment, life-prolonging measures and comfort and palliative care, but historically, this has been a gap in the literature. Recently, there have been multiple papers discussing Islamic bioethics, particularly in regards to end of life care in adults; however, there has been a lack of literature discussing the Islamic perspective on issues related to neonatal and perinatal end of life care...
2023: Frontiers in Pediatrics
#34
JOURNAL ARTICLE
Solimar Santiago-Warner
The Resolved Through Sharing (RTS) Perinatal bereavement model is an approach used for working with birthing people and their families who have experienced a perinatal loss. RTS is designed to help families cope with their grief and integrate the loss in their lives, meet the needs of the families during the initial crisis, and offer comprehensive care to each member of the family affected by the loss. This paper utilizes a case illustration to describe a year-long bereavement follow-up of an undocumented underinsured Latina woman who suffered a stillbirth during the beginning of the COVID-19 pandemic and the hostile anti-immigrant policy during the Trump presidency...
May 3, 2023: Clinical Social Work Journal
#35
JOURNAL ARTICLE
Bridget Amankwah, Mary Ani-Amponsah, Mustapha Mahama, Alberta Gyepi-Garbrah, Doris Richardson, Olivia Nyarko Mensah, Hannah Acquah, Dzigbordi Kpikpitse, Rasheed Ofosu-Poku
One of the common undesirable outcomes of pregnancy is perinatal loss. Healthcare systems strive to reduce the incidence of perinatal loss but typically little attention is on the experiences of bereaved mothers following perinatal loss, particularly in low and middle-income countries where such deaths are common. This research explored the lived experiences of mothers with perinatal loss in the Kumasi metropolis, Ghana. A qualitative design was used to explore the experiences of nine (9) bereaved mothers from the Komfo Anokye Teaching Hospital's postnatal ward and the Mother and Baby Unit...
2023: Journal of Social Work in End-of-life & Palliative Care
#36
JOURNAL ARTICLE
DonnaMaria E Cortezzo, Marissa Vawter-Lee, Abdullah Shoaib, Charu Venkatesan
Fetal neurology is a rapidly evolving and expanding field. Discussions about diagnosis, prognosis, treatment options, and goals of care often begin in the antenatal period. However, there are inherent challenges to fetal counseling of neurological diagnoses due to limitations of fetal imaging, prognostic uncertainty, and variability in neurodevelopmental outcomes. In the midst of uncertainty, families are challenged with preparing a care plan for their baby while simultaneously experiencing profound grief. The paradigms of perinatal palliative care can assist with the grieving process and help frame diagnostic testing and complex decision-making within the context of a family's spiritual, cultural, and social belief system...
2023: Frontiers in Pediatrics
#37
JOURNAL ARTICLE
David Kavuma, Venantius Bbaale Kirwana, Mary Taani
INTRODUCTION: HIV serostatus disclosure is a fundamental HIV prevention and care strategy yet with a paucity of literature. This study comprehended the factors associated with HIV serostatus disclosure to sexual partners among young people aged 15-24 years on anti-retroviral therapy (ART). METHODS: This explanatory sequential study utilized quantitative data from 238 young people who had been on ART for over 12 months and were sexually active for at least 6 months in seven districts of Central Uganda...
2023: HIV/AIDS: Research and Palliative Care
#38
JOURNAL ARTICLE
[Integrated management during the perinatal period for total anomalous pulmonary venous connection].
Yi Sun, Si-Lin Pan, Zhi-Xian Ji, Gang Luo, Hao Wan, Tao-Tao Chen, Ai Zhang, Rui Chen, Quan-Sheng Xing
OBJECTIVES: To evaluate the clinical effectiveness of integrated management during the perinatal period for fetuses diagnosed with total anomalous pulmonary venous connection (TAPVC) by prenatal echocardiography. METHODS: Clinical data of 64 cases of TAPVC fetuses diagnosed by prenatal echocardiography and managed with integrated perinatal care in Qingdao Women and Children's Hospital from January 2017 to December 2021 were retrospectively analyzed. Integrated perinatal care included multidisciplinary collaboration among obstetrics, fetal medicine, ultrasound, pediatric cardiology, pediatric anesthesia, and neonatology...
May 15, 2023: Zhongguo Dang Dai Er Ke za Zhi, Chinese Journal of Contemporary Pediatrics
#39
JOURNAL ARTICLE
Zhenjiang Chen, Xiaomei Dai, Yanhong Li
BACKGROUND: To determine whether early neutrophil, lymphocyte, and platelet ratio (NLPR), neutrophillymphocyte ratio (NLR), and platelet-lymphocyte ratio (PLR), calculated based on easily available parameters in complete blood count, are associated with the development of acute kidney injury (AKI) and mortality during neonatal intensive care unit (NICU) stay, and to evaluate whether these ratios could act as a predictor of AKI and mortality in neonates. METHODS: The pooled data of 442 critically ill neonates from our previously published prospective observational studies of urinary biomarkers were analyzed...
May 15, 2023: Annals of Palliative Medicine
#40
JOURNAL ARTICLE
Katherine F Guttmann, Gabriella N Raviv, Christine A Fortney, Andrea S Weintraub
Objectives: To explore (1) how neonatal nurses (NN) and social workers (SW) define serious illness and (2) how physician, nurse, and SW perceptions of serious illness differ. Design: Prospective survey study. Setting/Subjects: Members of the National Association of Neonatal Nurses or the National Association of Perinatal Social Workers. Measurements: We circulated a modified version of a previously developed survey. Participants were given a list of definition components and asked to rank components by importance and to suggest modifications...
May 4, 2023: Journal of Palliative Medicine
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