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 1–25 of 35 publications
Facilitating home birth in perinatal palliative care: A case report
Abstract
Background: Perinatal palliative care can offer compassionate support to families following diagnosis of a life-limiting illness, to enable them to make valued choices and the most of the time that they have with their newborn. However, home birth is …
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…
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…
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…
The Role of Midwives in US Perinatal Palliative Care: A Scoping Review
Abstract
Introduction: Perinatal palliative care (PPC) is a rapidly growing and essential reproductive health care option for pregnant persons with a diagnosed life-limiting fetal condition who continue their pregnancy. The provision of PPC is within the scope…
What Families of Children With Medical Complexity Say They Need: Humanism in Care Delivery Change
There is growing consensus that centering lived experience is needed to meaningfully transform the burdensome systems of care for children with medical complexity (CMC) and their families. The Collaborative Improvement and Innovation Network to Advance Care fo…
Accessibility and challenges of perinatal palliative care in Poland
Background: This article examines the legal status and level of accessibility to perinatal palliative care (PPC) in Poland, with a focus on the number of services provided and the number of parents receiving PPC services. Material(s) and Method(s): The desk re…
Data-driven approach to understanding neonatal palliative care needs in England and Wales: a population-based study 2015-2020
Abstract
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 c…
Parents' hope in perinatal and neonatal palliative care: a scoping review
Background: The diagnosis of a life-limiting condition of a child in the perinatal or neonatal period is a threat to parental hopes. Hope is an interactional and multidimensional construct, and in palliative care, it is a determinant of quality of life, surviv…
Perinatal Palliative Care: Additional Costs of an Interprofessional Service and Outcome of Pregnancies in a Cohort of 115 Referrals
Abstract
Background: An increasing number of life-limiting conditions (LLCs) is diagnosed prenatally, presenting providers with the ability to present perinatal palliative care (PnPC) services as an option.
Objective: To (1) determine the profile characterist…
'You have a little human being kicking inside you and an unbearable pain of knowing there will be a void at the end': A meta-ethnography exploring the experience of parents whose baby is diagnosed antenatally with a life limiting or life-threatening condition
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 increa…
Addressing bias and disparities in periviable counseling and care
Addressing bias and disparities in counseling and care requires that we contend with dehumanizing attitudes, stereotypes, and beliefs that our society and profession holds towards people of color, broadly, and Black birthing people in particular. It also neces…
Infant Maternal Perinatal Advanced Care Team: A Pilot Collaboration for Families Facing a Life-Threatening Fetal Diagnosis
Background: The Infant Maternal Perinatal Advanced Care Team program was launched in 2018 to enhance perinatal palliative care services in Toronto, Canada. Methods: Pilot patients were (1) carrying a fetus with a life-limiting diagnosis and (2) receiving care …
Perinatal palliative care
Perinatal Palliative Care is a model of care designed to prevent and treat the physical, spiritual, emotional, and social needs of fetuses and newborn infants with life-threatening or life-limiting conditions. The care extends to the infant's family. It is del…
Perinatal Palliative Care in the Neonatal Intensive Care Unit
With the frequency of infant deaths in the United States, many attributed to congenital malformations and prematurity, the neonatal intensive care unit (NICU) nurse must be adept at planning and providing perinatal palliative care. The NICU nurse requires educ…
Reimagining Perinatal Palliative Care: A Broader Role for Support in the Face of Uncertainty
Perinatal medicine is confronted by a growing number of complex fetal conditions that can be diagnosed prenatally. The evolution of potentially life-prolonging interventions for the baby before and after birth contributes to prognostic uncertainty. For clinici…
Uncertainty and Perinatal Post‐Traumatic Stress Disorder in the Neonatal Intensive Care Unit
Parents of infants in the neonatal intensive care unit (NICU) are at increased risk of developing perinatal post‐traumatic stress disorder (PPTSD), a mental health condition known to interfere with healthy parental and infant attachment. Feelings of uncertaint…
'Creating a safe space': how perinatal palliative care coordinators navigate care and support for families
BACKGROUND: Families who learn that their unborn baby has a life-limiting fetal condition are often overwhelmed by this news, alongside navigating an unfamiliar healthcare system. A skilled perinatal palliative care coordinator (PPCC) can help these families, …
Evaluation of Care Providers' Attitude toward Perinatal Palliative Care and its Challenges in the Selected Teaching Hospitals of Tehran in 2019
OBJECTIVES: The present study aims to determine the attitudes of care providers including obstetricians, paediatricians and midwives working in perinatal, obstetric and neonatal intensive care unit (NICU) wards of the selected teaching hospitals in Tehran in 2…
Experiences from the first 10 years of a perinatal palliative care program: A retrospective chart review
Background Perinatal palliative care is a relatively new component of paediatric palliative care which supports families who are expecting the birth of a child with a life-limiting condition. This study seeks to understand the characteristics of the infants an…
Experiences of general practice of children with complex and palliative care needs and their families: a qualitative study
OBJECTIVES: To investigate the views and experiences of general practice of children with life-limiting and life-threatening conditions, and their family members, through secondary analysis of a qualitative serial interview study. Thematic analysis was conduct…
Palliative care in the neonatal intensive care unit
With increasing facilities for antenatal diagnosis, lowering gestation for intiation of intensive care, palliative care in the perinatal period is increasingly recognized as a specialist area. There have been standards and pathways developed in the UK that pro…
Parents' Descriptions of Neonatal Palliation as a Treatment Option Prior to Periviable Delivery
During periviable deliveries, parents are confronted with overwhelming and challenging decisions. This study aimed to qualitatively explore the language that pregnant women and important others utilize when discussing palliation, or "comfort care," as a treatm…
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