perinatal palliative care

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...

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...

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...

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...

We are entering a new era of integration between neonatal medicine and paediatric palliative care, with increasing recognition that the role and skills of palliative care extend beyond care of only the terminally ill infant. This paper addresses the principles of paediatric palliative care and how they apply in the NICU, considers who provides palliative care in this setting and outlines the key components of care. We consider how the international standards of palliative care pertain to neonatal medicine and how a fully integrated approach to care may be realised across these two disciplines...

BACKGROUND: A significant number of critically ill neonates face potentially adverse prognoses and outcomes, with some of them fulfilling the criteria for perinatal palliative care. When counselling parents about the critical health condition of their child, neonatal healthcare professionals require extensive skills and competencies in palliative care and communication. Thus, this study aimed to investigate the communication patterns and contents between neonatal healthcare professionals and parents of neonates with life-limiting or life-threatening conditions regarding options such as life-sustaining treatment and palliative care in the decision-making process...

BACKGROUND: Despite the diagnosis of life-limiting foetal conditions, some mothers choose to continue their pregnancies. The experiences of these individuals are relatively unknown, making it difficult for perinatal palliative services to be targeted towards their needs. AIM: To examine maternal experiences in perinatal palliative care among those who choose to continue their pregnancies despite life-limiting foetal condition. DESIGN: Qualitative, retrospective study involving semi-structured interviews...

BACKGROUND: Parents of babies diagnosed with life limiting conditions in the perinatal period face numerous challenges. Considerations include the remainder of the pregnancy, delivery of the baby and decisions around care in the neonatal period. AIM: To increase understanding of how parents experience the diagnosis of a life-limiting or life-threatening condition, during pregnancy and following the birth of their baby, by answering the question: 'what is known about the perinatal experiences of parents of babies with a life-limiting or life-threatening diagnosis?' DESIGN: A meta-ethnography was conducted to synthesise findings from existing qualitative evidence...

INTRODUCTION: Caring for families experiencing perinatal loss is a fundamental component of midwifery practice, but little attention is paid to perinatal palliative care in midwifery curricula. Lack of educational preparation and self-care resources negatively impacts midwifery students and health care teams caring for families experiencing stillbirth. PROCESS: A private, urban university conducted a curricular quality improvement project to integrate perinatal palliative care into the midwifery curriculum using a high-fidelity, branching simulation pedagogy...

BACKGROUND: Minimal enteral feeding after birth has been developed as a strategy to enhance the functional maturation of the gastrointestinal tract. This study aimed to examine the relationship between the duration of minimal enteral feeding and time to regain birth weight in extremely low-birth-weight infants. METHODS: This retrospective study included all extremely low-birth-weight infants born between January 2018 and December 2020. Infants with major congenital anomalies and conditions requiring surgery and those who died or received palliative care in the first 10 days of life were excluded from the analysis...

OBJECTIVE: Perinatal palliative care (PPC) is the coordinated application of palliative care principles to the care of families, fetuses and newborns with suspected life-limiting conditions. This approach relies on continuity of care that spans pregnancy, birth and beyond. The goal of this retrospective cohort study was to evaluate outcomes and PPC continuity in infants born to families who received PPC at a quaternary care pediatric hospital, and to identify targets to improve care continuity...

When a severe diagnosis is made before or after birth, perinatal palliative care (PPC) can be provided to support the infant, parents and involved healthcare providers. An integrative and systematic overview of effectiveness and working components of existing PPC programs was needed. An integrative search was conducted in MEDLINE, Embase, CENTRAL, CINAHL, PsycInfo and Web of Science. Study designs examining the effect of PPC compared to regular care, and (empirical) articles describing the components of care included in existing PPC initiatives were included...

OBJECTIVE: To quantify admissions to neonatal units in England and Wales with potential need for palliative care. DESIGN, SETTING AND PATIENTS: Diagnoses and clinical attributes indicating a high likelihood of requiring palliative care were mapped to categories within the British Association of Perinatal Medicine's (BAPM) framework on palliative care. We extracted data from the National Neonatal Research Database on all babies born and admitted to neonatal units in England and Wales 2015-2020...

AIM: To document current teaching methods, curriculum, and perceived educational preparation related to the teaching of life-limiting fetal conditions, termination, and perinatal palliative care to Australian student midwives. BACKGROUND: Australian women receiving a diagnosis of a life-limiting fetal condition are generally offered a choice between termination of pregnancy and perinatal palliative care. Midwives are often involved with caring for these women. What Australian student midwives are being taught about life-limiting fetal conditions, termination of pregnancy, and perinatal palliative care during their entry-to-practice program is unknown...

AIM: We explored professionals' views on sharing decision-making with parents before and after an extremely preterm birth and what healthcare professionals considered severe outcomes. METHODS: A nationwide, multi-centre online survey was carried out among a wide range of perinatal healthcare professionals in the Netherlands from 4 November 2020 to 10 January 2021. The medical chairs of all nine Dutch Level III and IV perinatal centres helped to disseminate the survey link...

The aim of this review was to discuss bioethics in prenatal diagnosis and health care after recent legislative and judicial changes affecting reproductive rights, such as the repeal of 'Roe v. Wade' in the United States. We recognize that abortion involves particular moralities that are not universal or shared by all cultures, groups, and individuals. We reviewed the historical aspects of embryology and personhood, fetal morbidity and mortality, and parental options for prenatal diagnostic testing. We examined relevant ethical issues including informed consent, the emergence of fetal pain, reproductive autonomy, the fiduciary responsibilities of pregnant mothers, and the obligations of physicians caring for the maternal-fetal dyad...

OBJECTIVE: To analyze and compare perspectives on antenatal consultation and decision-making from participants with varying degrees of prematurity experience and clinician-experts. STUDY DESIGN: Open-ended interviews structured around topics previously identified by recognized clinician-experts were conducted with participants having different levels of prematurity experience. Analysis used mixed methods (thematic and mental models analysis). Secondary sub-group comparisons were performed, based on degree of experience...

The number of homeless people has been constantly increasing in Europe over recent years, as well as the proportion of women among the homeless population. Pregnancy can increase the risk of becoming homeless and, on the other hand, homelessness has been widely connected to adverse perinatal outcomes. The objective of this study was to describe the overall perceived impact of homelessness on health during pregnancy and the postpartum period, using a qualitative research approach to prioritize women's perspective...

Against the background of a society that tends to underrate the grief experienced by parents whose infants have died prematurely, the model "SORROWFUL" is presented here with the intent to highlight the significance of the death of a newborn for the affected family. It is a supportive tool in counseling for parents grieving the (impending) loss of an infant(s) during peri- or neonatal life and may be implemented within the parental psychosocial support setting beginning with the initial diagnosis until well after the death of the child...

Palliative care in the delivery room is an interprofessional and interdisciplinary challenge addressing the dying newborn and parents as well as the caregivers. It differs in some significant aspects from palliative care in the neonatal intensive care unit. Clinical experience suggests that many details regarding this unique specialized palliative care environment are not well known, which may result in some degree of insecurity and emotional distress for health care providers. This article presents basic background information regarding the provision of palliative care to newborns within the delivery room...