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 1251–1275 of 4332 publications
Clinician perception of care at the end of life in a quaternary neonatal intensive care unit
INTRODUCTION: Care for neonates at the end of life (EOL) is often challenging for families and medical teams alike, performed suboptimally, and requires an experienced and compassionate clinician. Much literature exists on adult and pediatric EOL care, but lim…
Communication and information sharing with pediatric patients including refugees with advanced cancer, their caregivers, and health care professionals in Jordan: a qualitative study
Introduction: Effective communication in pediatric palliative cancer care is an important aspect of practice to enhance patient- and family-centered care, and to optimize decision-making. However, little is known about communication preferences practices from …
Communication of Early Integration of Palliative Care for Children With Cancer in Latin America: The Care as a Vessel Metaphor
``Over the past two decades, pediatric palliative care (PPC) has evolved significantly, moving away from the concept of care provided solely at end-of-life and toward the concept of holistic, supportive care provided synergistically with disease-directed thera…
Community-Based Pediatric Palliative Care: How Services Support Children's and Families' Quality of Life
Background: The Massachusetts Department of Public Health's Pediatric Palliative Care Network (PPCN) provides Community-Based Pediatric Palliative Care (CBPPC) to children with life-limiting conditions and their families. CBPPC services aim to improve children…
Competencies for Psychology Practice in Pediatric Palliative Care
OBJECTIVE: Pediatric psychologists have unique expertise to contribute to the care of youth with serious illnesses yet are not routinely integrated into pediatric palliative care (PPC) teams. To better define the role and unique skillset of psychologists pract…
Competencies of junior medical doctors in managing seriously ill and injured children: time to rethink our current training approach?
Background: The correct treatment of very ill and injured children is critical, yet little is known about the competencies of South African (SA) junior doctors in managing these children.
Methods: This survey documents SA junior doctors' reported resuscitatio…
Complicated Grief Following the Traumatic Loss of a Child: A Systematic
Complicated grief is a disabling condition that occurs when the natural grief process is disturbed or prolonged. Research demonstrates that complicated grief is more prevalent following the sudden or violent loss of a child. Despite the high incidence of accid…
Components of Perinatal Palliative Care: An Integrative Review
When a severe diagnosis is made before or after birth, perinatal\
Conceptualizing the Value of Pediatric Concurrent Hospice Care
Given that pediatric concurrent hospice care has been available for more than a decade, it is appropriate to seek an understanding of the value of this care delivery approach. Value is the cost associated with achieving beneficial health outcomes. In pursuit o…
Consultation patterns before and after embedding pediatric palliative care into a pediatric hematology/oncology clinic
Introduction: Palliative care is a critical component of pediatric oncology care. Embedded pediatric palliative care (PPC) is relatively new in pediatric hematology/oncology (PHO) and may improve access, utilization, and quality of PPC. In June 2020, the Mayo …
Consulting parents bereaved by childhood cancer: A qualitative study to
Twelve Australian parents bereaved by childhood cancer were interviewed
Context of a neonatal death affects parental perception of end-of-life care, anxiety and depression in the first year of bereavement
BACKGROUND: Neonatal death is often preceded by end-of-life medical decisions. This study aimed to determine whether the context of death - after a decision of withholding or withdrawing life-sustaining treatment (WWLST) or despite maximum care - was associate…
Context of death and end-of-life decision-making in paediatric patients with neurological conditions
Introduction and objectives: Death in children with neurological disease is usually complex and requires an interdisciplinary approach. Our aim was to describe the context of death in children with neurological disease according to the underlying condition.
Ma…
Continuing bonds following stillbirth: protective and risk factors associated with parental bereavement adaptation
To investigate any association between expressions of parents' continuing bond with their stillborn baby and bereavement adaptation. Continuing bonds theory suggests that bereaved parents adapt to the loss of their child by sharing and transforming mental repr…
Coping with paediatric end-of-life care: Insights from South African paediatric registrars
Introduction. The provision of end-of-life care and experience of the death of a paediatric patient is challenging. Objective. This study aimed to investigate the experiences and coping strategies of South African (SA) paediatric registrars when providing end-…
Creating a "Journey Map" for Children with Severe Neurologic Impairment: A Collaboration Between Private and Academic Pediatric Palliative Care, Nonprofit Organizations, and Parents. (FR201B)
Outcomes:
1. Describe how design thinking methodology can be applied to palliative care problems to create novel solutions and products for patients and families
2. Identify the stages of life for a patient with severe neurologic impairment and parental need…
Crossroads of parental decision making: Intersections of hope, communication, relationships, and emotions
Parents of children born with complex life-threatening chronic conditions (CLTCs) experience an uncertain trajectory that requires critical decision making. Along this trajectory, hope plays an influential but largely unexplored role; therefore, this qualitati…
Current Status of the Pediatric Palliative Care Pilot Project in South Korea Based on the Experience of a Single Center
Purpose: We evaluated the status of patients enrolled in South Korea’s pediatric palliative care pilot project based on the experience of a single center. This study examined factors related to end-of-life services and differences in medical costs. Methods: Th…
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…
Decisions concerning resuscitation and end-of-life care in neonates. Bioethical aspects (Part II)
Coping with the death of a newborn infant requires training and reflection regarding the end-of-life decision-making process, communication with the family, and the care to be provided. The objective of this article is to analyze in depth the salient aspects o…
Defining the denominator for measuring quality of end-of-life care in children with cancer: Results of a nominal group technique
227Background: National Quality Forum (NQF)-endorsed end-of-life (EOL) quality measures helped identify disparities in quality of EOL care in adults with cancer. In adults, those quality measures apply to all adults dying with cancer or those with Stage III or…
Design and Administration of Patient-Centred Outcome Measures: The Perspectives of Children and Young People with Life-Limiting or Life-Threatening Conditions and Their Family Members
BACKGROUND: Self-reported health data from children with life-limiting conditions is rarely collected. To improve acceptability and feasibility of child and family-centred outcome measures for children, they need to be designed in a way that reflects preferenc…
Developing Community-Based Palliative Care for Children: A Community Case Study from an Urban Informal Settlement in Bangladesh
BACKGROUND: Globally, more than 97% of children needing palliative care reside in low- and middle-income countries, where there is very limited access to palliative care. Several community-based palliative care programs focused on adults, have been described i…
Development and Evaluation of a Child Neurology Resident Curriculum for Communication Around Serious Illness
Background: Communication around serious illness is a core competency for all residencies. One-fifth of neurology residencies have no curriculum. Published curricula use didactics or role-play to assess confidence performing this skill without evaluation in cl…
Development of an Institution-Wide Pediatric End-of-Life Summit
End-of-life (EOL) care in pediatrics is a unique subspecialty lacking adequate provider education and training. Patient and family outcomes may improve when clinicians are provided with training in this care. Recognizing the need for this specialized education…