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 76–100 of 163 publications
Medical complexity and concurrent hospice care: A national study of Medicaid children from 2011 to 2013
PURPOSE: Pediatric hospice is a comprehensive model of care for medically complex children at end of life. The Affordable Care Act changed regulatory requirements for pediatric Medicaid enrollees to allow for enrollment into hospice services while still receiv…
Neonatal donation: are newborns too young to be recognized?
Neonatal organ and tissue donation is not common practice in the Netherlands. At the same time, there is a transplant waiting list for small size-matched organs and tissues. Multiple factors may contribute to low neonatal donation rates, including a lack of aw…
Neonatal Nurses' Perceptions of Palliative Care in the Neonatal Intensive Care Unit
Purpose: Neonatal palliative care is widely endorsed as an essential aspect of neonatal intensive care unit (NICU) practice, yet inconsistencies in its use continue to exist. We examined neonatal nurses' perceptions of barriers and facilitators to palliative c…
Paediatric end-of-life care - symptoms and problems: parent assessment
OBJECTIVE: Symptoms and problems (S&P) are under-reported in children in end-of-life care.To target future interventions, the primary aim was to examine S&P in children in end-of-life care. METHOD(S): All parents, who lost a child under the age of 18 years due…
Pediatric palliative care: Competency and educational needs assessment in pediatricians of a developing country
Pediatric Palliative Care (PPC) is a nascent subspecialty that aims on achieving the best possible quality of life for children with life-threatening illnesses. To attain this goal in a developing country, Pediatricians require adequate knowledge and skill in …
Perinatal Palliative Care Service: Developing a Comprehensive Care Package for Vulnerable Babies with Life Limiting Fetal Conditions
Background: Perinatal Palliative Care provides comprehensive and holistic care for expectant and new parents, who receive a diagnosis of life-limiting fetal condition and opt to continue pregnancy and care for their newborn infant. Aim: To develop a service pr…
Quality measures for end-of-life care for children with cancer: A modified Delphi approach
BACKGROUND: The quality of adult end-of-life (EOL) cancer care has benefited from quality measures, but corresponding pediatric measures are lacking. Therefore, the authors used a validated expert panel method to recommend EOL quality measures for pediatric on…
Using Quality Improvement Science to Create a Navigator in the Electronic Health Record for the Consolidation of Patient Information Surrounding Pediatric End-of-Life Care
BACKGROUND: It is important to document the domains surrounding end-of-life (EOL) care in the electronic health record (EHR). No pediatric navigator exists for these purposes. MEASURES: Medical charts were reviewed for documentation surrounding code status and…
Whom are we seeking to protect? Extremely preterm babies and moral distress
Advances in perinatal care bring with them ethical challenges and difficult questions. When should we provide life-sustaining interventions, and who should decide? Particularly at the edges of viability, some clinicians may feel required to provide a level of …
Bereaved parents' views on end-of-life care for children with cancer: Quality marker implications
Background: End-of-life (EOL) quality markers in adult oncology include home death and intensive care unit avoidance. Corresponding markers are lacking in pediatric oncology. This study was aimed at describing bereaved parents' perspectives of high-quality EOL…
Caring for Dying Infants: A Systematic Review of Healthcare Providers' Perspectives of Neonatal Palliative Care
OBJECTIVES: The palliative and hospice care movement has expanded significantly in the United States since the 1960s. Neonatal end of life care, in particular, is a developing area of practice requiring healthcare providers to support terminally ill newborns a…
Comparison of End-of-Life Care Practices Between Children With Complex Chronic Conditions and Neonates Dying in an ICU Versus Non-ICUs: A Substudy of the Pediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) Project
OBJECTIVES: To describe and compare characteristics of care provided at the end of life for children with chronic complex conditions and neonates who died in an ICU with those who died outside an ICU. DESIGN: Substudy of a nation-wide retrospective chart revie…
Congruence Gaps between Adolescents with Cancer and Their Families Regarding Values, Goals, and Beliefs about End-of-Life Care
Importance: Lack of pediatric advance care planning has been associated with poor communication, increased hospitalization, poor quality of life, and legal actions. Clinicians presume that families understand adolescents' treatment preferences for end-of-life …
Considering medical assistance in dying for minors: the complexities of children's voices
Medical assistance in dying (MAID) legislation in Canada followed much deliberation after the Supreme Court of Canada's ruling in Carter v. Canada Included in this deliberation was the Special Joint Committee on Physician Assisted Dying's recommendation to ext…
End-of-Life Care for Neonates: Assessing and Addressing Pain and Distressing Symptoms
One of the most essential components of end-of-life (EOL) care for neonates is assessing and addressing distressing symptoms. There is limited evidence to guide neonatal EOL symptom management and therefore significant variety in treatment (1-4). EOL neonatal …
End-of-Life Care of Hospitalized Children with Advanced Heart Disease
Lee J, et al. J Korean Med Sci. 2020 Feb;35(16):e107. https://doi.org/10.3346/jkms.2020.35.e107
First pediatric organ donation after circulatory determination of death in Singapore: Facing challenges in the absence of a local practice guideline
Pediatric organ donation represents only a low proportion of overall organ donation in many parts of world, unable to match the needs for pediatric organ transplantation. Pediatric organ donation after circulatory determination of death (DCD) is increasingly e…
Home-based end of life care for children and their families - a systematic scoping review and narrative synthesis
PROBLEM: There is a growing international drive to deliver children's palliative care services closer to home. Families should have choice of where end of life (EOL) care is provided with home as one option. This review aims to establish the current internatio…
"If We Build It, Will They Come?" A Cohort Study of Family Utilization of a Pediatric-Specific Inpatient Hospice Facility (GP709)
Objectives: * Interpret results of this study relative to previous research. * Evaluate the benefits of a pediatric inpatient hospice facility. Importance: Pediatric-specific hospice facilities (PHFs) are gaining interest as an alternative for end-of-life care…
Integration of Routine Parental Request of Organ Donation in End-of-Life Care of Children with Neurologic Disorders in the UK: Unresolved Medical, Legal, Cultural, and Religious Challenges
The UK adopted the opt-out system (deemed or presumed consent) in end-of-life organ donation enforceable in May 2020. Presumed consent applies to adults but not children. Transplant advocates have recommended that all children on end-of-life care should be ref…
Moral Distress in the Neonatal Intensive Care Unit: What Is It, Why It Happens, and How We Can Address It
Moral distress is prevalent in the neonatal intensive care unit (NICU), where decisions regarding end-of-life care, periviable resuscitation, and medical futility are common. Due to its origins in the nursing literature, moral distress has primarily been repor…
National Children's Hospitals Bereavement Network standards for supporting families following the death of a child
In England, a child death review process must be undertaken when a child dies, regardless of the cause of death. Scotland and Wales have their own version of the child death review process, while it is the author's understanding that Northern Ireland are still…
Palliative care for pediatric intensive care patients and families
PURPOSE OF REVIEW: Children with medical or surgical critical illness or injury require skillful attention to physical, emotional, psychological, and spiritual needs, whereas their families need support and guidance in facing life-threatening or life-changing …