Published literature
Publications
Published children's palliative care research: browsable, searchable and filterable by the same taxonomy as researchers, groups and guides.
This library is curated by The Siden Research Team as part of the TRENDS in Pediatric Palliative Care newsletter and library. Learn more about TRENDS and The Siden Research Team and subscribe to read their monthly expert commentaries on their website.
Showing 151–175 of 560 publications
Factors Associated With Palliative Care Birth Planning at a Pediatric Hospital
OBJECTIVE: To identify factors associated with the receipt, completion, and goals of palliative care birth plans during the prenatal period. DESIGN: Retrospective observational study of medical record data. SETTING: Midwestern U.S. quaternary pediatric hospita…
Grasping the meaning of perinatal palliative care for the multiprofessional team
Objective: To grasp the meaning of perinatal palliative care for the multidisciplinary team.
Methods: This is a qualitative study guided by content analysis. The study included 56 health professionals working in maternal and child units of a public university…
INTRODUCTION OF A PERINATAL PALLIATIVE CLINICAL NURSE SPECIALIST ROLE ENHANCING PARTNERSHIP WORKING BETWEEN PALLIATIVE CARE AND PERINATAL SERVICES-ONE YEAR ON
Objectives Support such as referral to perinatal palliative care and access to hospice services may promote well-being of families of babies diagnosed with life-limiting conditions.1 2 A children's hospice-based perinatal palliative clinical nurse specialist (…
Maintaining Parental Roles During Neonatal End-of-Life Care: A Review of the Literature
Parents who are experiencing neonatal death need support in promoting and maintaining their parental role. This includes parenting their infant during end-of-life. Bedside nurses should partner with parents to help them maintain the parent-infant relationship …
Managing CHD in Tertiary NICU in Collaboration with a Cardiothoracic Center
Increasingly non-cardiac tertiary neonatal intensive care units (NCTNs) manage newborns with CHD prior to planned transfer to specialist cardiac surgical centres (SCSC). It improves patient flow in SCSCs, enables families to be nearer home, and improves psycho…
Meaningful Display of Legacy Items Among Families Experiencing a Perinatal, Neonatal, or Infant Death
Outcomes: 1. Discuss how families use perinatal palliative legacy items after they return to the community. 2. Understand how perinatal palliative legacy items can affect deceased infant identity in the family. Key Message: Current literature does not address …
Mortality in the neonatal intensive care setting: Do benchmarks tell the whole story?
AIM: Australian neonatal mortality data are collected and shared within collaborative networks. Individual unit outcomes are benchmarked between units and presented in quarterly or yearly reports. Low mortality is commonly interpreted as optimal performance. H…
Nurses' beliefs in the care of newborns at the end of life in the neonatal intensive care unit
Objective: To describe nurses' beliefs and attitudes related to care during the end-of-life process and death in a neonatal intensive care unit.
Method: Descriptive and qualitative study with nurses working in a neonatal intensive care unit who experienced ca…
Nurses' Perspectives Regarding Challenges of Providing Perinatal/Neonatal End-of-Life Care in a Regional Hospital: An Exploratory Qualitative Study
AIM: This qualitative study aimed to explore nurses' perspectives regarding the challenges of providing perinatal/neonatal end-of-life care in a regional hospital.
METHOD(S): This exploratory qualitative study was conducted with 20 nurses working in Turkey. St…
Palliative Care for Infants in the Neonatal Intensive Care Unit: A Scoping Review
This scoping review aimed to explore the characteristics of neonatal palliative care in the neonatal intensive care unit, including the features, contents, and experiences of infants, parents, and nurses during palliative care. Five databases (PubMed, Cochrane…
Palliative Care for Newborns in India: Patterns of Care in a Neonatal Palliative Care Program at a Tertiary Government Children's Hospital
Neonatal palliative care is a specialized area within children's palliative care, which focusses on the needs of infants with life-limiting or life-threatening conditions. Nearly one quarter of global neonatal deaths occur in India, where neonatal palliative c…
Palliative Care in the Neonatal Intensive Care Unit: An Evolutionary Concept Analysis of Uncertainty in Anticipated Loss
Background: Although the concepts of uncertainty and anticipated loss have been explored in a variety of contexts, advances in genetic testing and life-sustaining technology rendered changes in the care of medically complex infants. The separate concepts no lo…
Parental factors affecting their participation in decision-making for neonates with life-threatening conditions: A qualitative study Parents' participation in decision-making
Background: Parents and healthcare professionals make decisions for neonates with life-threatening conditions (LTCs). Parents may be inadequately included. Limited studies have evaluated influential factors. We aimed to explore parental factors affecting paren…
Parents' descriptions of labouring with an antepartum fetal death: Findings from the Birthing in Grief study
Abstract
Background: Evidence to guide intrapartum care when an unborn baby has died is limited.
Aims: To explore parents' experiences of care during labour of an antepartum stillbirth.
Materials and methods: Semi-structured interviews with 18 bereaved paren…
Parents' participation in collegial meetings to discuss withholding or withdrawing treatment for their newborn: Working to improve information-sharing
Aim: The role of parents in decision-making concerning their child's end-of-life care is not clearly defined. Their participation is encouraged by ethical reflection, in particular by the CCNE (French National Ethics Advisory Committee), but laws are limited t…
Perinatal Palliative Care Fellowship: Development of a Novel Subspeciality Track in Palliative Medicine
Outcomes: 1. In reviewing trends in pediatric palliative medicine fellowship applicant pools and discussing the landscape of perinatal medicine, participants will understand the rationale for development of a new subspecialty fellowship track in hospice and pa…
Perinatal palliative care in low- and middle-income countries: a scoping review
Background: 2.4 million neonatal deaths and 2.6 million stillbirths occur each year. Over 98% of perinatal loss occurs in low- and middle-income countries. Despite the global burden of perinatal loss, access to relevant perinatal palliative and psychosocial ca…
PERINATAL PALLIATIVE CARE REQUIREMENTS IN THE WEST MIDLANDS: A SERVICE EVALUATION PROJECT
Objectives We aimed to understand the population of pregnant people and babies who could benefit from an expanded perinatal palliative care service in the West Midlands, due to lifelimiting conditions in foetuses or babies. Methods We reviewed antenatal care r…
Professional bereavement photography for perinatal loss: A mixed-methods study
Abstract
This study addresses research gaps regarding the impact of professional bereavement photography for perinatal loss. Utilizing a mixed-methods research design, 504 parents completed an online survey measuring their attitudes toward bereavement photogra…
Recognising uncertainty: an integrated framework for palliative care in perinatal medicine
In perinatal medicine, the number of babies with life-limiting or life-threatening conditions is increasing and the benefits of providing palliative care with a holistic, interdisciplinary approach are well documented. It can be particularly challenging, howev…
Respecting Spirituality During Extubations: Holding Space for Miracles and Legacy with Reactive Comfort Plans
Baby M experienced hypoxic ischemic encephalopathy with four subsequent unsuccessful extubations. He would not survive without potentially irreversible long-term ventilation. His parents lovingly decided against interventions that would not "fix" his underlyin…
Serious news communication between clinicians and parents impacts parents' experiences, decision-making, and clinical care for critically ill neonates
Physicians often disclose serious news with patients and families; however, many clinicians experience anxiety around these conversations.1 Fear of their patients' and their own emotional reactions may cause providers to avoid these conversations rather than e…
Single Center Utilization of Prenatal Palliative Care in Patients with Critical Congenital Heart Disease: Missed Opportunities?
Background: Congenital heart disease CHD is a common congenital anomaly with lesions requiring intervention before initial hospital discharge defined as critical CHD CCHD. Advances in prenatal detection, surgical, and post-operative care have improved early su…
Structured Framework for Multidisciplinary Parent Counseling and Medical Interventions for Fetuses and Infants with Trisomy 13 or Trisomy 18
Objective: Trisomy 13 (T13) and 18 (T18) are aneuploidies associated with multiple structural congenital anomalies and high rates of fetal demise and neonatal mortality. Historically, patients with either one of these diagnoses have been treated similarly with…
THE DEVELOPMENT OF A CHILDREN'S HOSPICE PERINATAL SERVICE TO IMPROVE PERINATAL PALLIATIVE CARE - 10 YEARS ON
Objectives Perinatal palliative care is an evolving specialty committed to providing care for fetuses and babies with a life limiting condition diagnosed in the antenatal or neonatal period. It also includes supporting the parents and extended family. Initiall…