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 26–50 of 163 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…
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…
End-of-life care in Brazilian Pediatric Intensive Care Units
OBJECTIVE: Most deaths in Pediatric Intensive Care Units involve forgoing life-sustaining treatment. Such deaths required carefully planned end-of-life care built on compassion and focused on palliative care measures. This study aims to assess topics related t…
End-of-life care in Brazilian pediatric intensive care units: challenges and opportunities
Pediatric Critical Care Medicine has evolved drastically as a specialty since its inception more than five decades ago.1 Advances in technology and medical interventions have led to a substantial reduction in mortality rates, which are now in the single digits…
Evaluation of service user-led workshops in children's palliative care education
Children's nurses report feeling unprepared when caring for children with life-limiting conditions and their families, while the value of including service users in the provision of nursing education is increasingly recognised. This small-scale service evaluat…
Navigating a child's best interest: the essential role of palliative care
In June, 2023, BBC One aired Jack Thorne's highly anticipated series Best Interests, the fictional story of Marnie (played by Niamh Moriarty), a teenager with a rare form of muscular dystrophy, whose rapid health deterioration forces her family to face the com…
Neonatal euthanasia in the context of palliative and EoL care
Neonatal deaths can be categorized in 5 modes along the dimension of intervention and physiology. This classification can be helpful to analyze the choices that can be made in end-of-life care in the NICU. In the Netherlands, neonatal euthanasia became an opti…
Palliative Care Family Support in Neonatology
In this chapter we will describe the evidence for palliative care family support beginning in the prenatal period and extending to acute and chronic neonatal intensive care unit (NICU) care and finally to bereavement. Neonatal providers have the unique opportu…
Parent experience of advance care planning: reconstructing meaning - grounded theory
OBJECTIVES: Parents have unique experience of caring for their child with a life-limiting illness and significant insight into the experience of advance care planning. However, little is known about how they experience and manage this process. Our objective wa…
Shared decision-making in pediatric palliative care
Shared decision-making (SDM) with parents and adolescents is normative in pediatric practice in North America. In this article we discuss how it is applicable to the practice of pediatric palliative care (PPC). As PPC itself is exemplary of patient-and-family-…
The roles of preparation, location, and palliative care involvement in parent-perceived child suffering at the end of life
Purpose Parents' perceptions of their child's suffering affect their bereavement experience. Identifying factors that shape parental perceptions of suffering could help build effective supportive interventions for children and parents navigating EOL and grief.…
What Does 'Good' Palliative Care Look Like for Children and Young People? A Qualitative Study of Parents' Experiences and Perspectives
BACKGROUND: Worldwide, around 21 million children would benefit from palliative care and over 7 million babies and children die each year. Whilst provision of paediatric palliative care is advancing, there major gaps between what should be done, and what is be…
Acceptability and feasibility of a pilot randomized controlled trial of Narrative e-Writing Intervention (NeW-I) for parent-caregivers of children with chronic life-threatening illnesses in Singapore.
BACKGROUND: Narrative e-Writing Intervention (NeW-I) is a novel psycho-socio-spiritual intervention which aims to bridge gaps in paediatric palliative care by providing anticipatory grief support to parent-caregivers who are looking after their child with a ch…
Achieving child-centred care for children and young people with life-limiting and life-threatening conditions-a qualitative interview study
This study aims to identify the symptoms, concerns, and care priorities of children with life-limiting conditions and their families. A semi-structured qualitative interview study was conducted, seeking perspectives from multiple stakeholders on symptoms, othe…
A Comparison of Young Adults With and Without Cancer in Concurrent Hospice Care: Implications for Transitioning to Adult Health Care
Purpose: Concurrent hospice care provides important end-of-life care for youth under 21 years. Those nearing 21 years must decide whether to shift to adult hospice or leave hospice for life-prolonging care. This decision may be challenging for young adults wit…
A realist evaluation of a home-based end of life care service for children and families: what works, for whom, how, in what circumstances and why?
Background: Children's palliative and end of life care is underpinned internationally by a commitment to provide care and support in the family's preferred place, which may include home, hospital or hospice. Limited evidence on models of best practice for the …
Factors impacting pediatric registered nurse attitudes toward caring for dying children and their families: A descriptive study
PURPOSE: The purpose of this study was to gain knowledge of the educational preparation and attitudes of registered nurses at a southeastern pediatric hospital toward caring for dying children and their families. DESIGN AND METHODS: A descriptive study with tw…
"Holding back my own emotions": Evaluation of an online education module in pediatric end-of-life care
Providing quality end-of-life care to a child who is dying in hospital can be stressful and challenging, and health professionals often feel ill-prepared and require additional support. End-of-Life Essentials offers online education modules for health professi…
"If We Build It, Will They Come?" A Cohort Study of Family Utilization of a Pediatric-Specific Hospice Home
Objective: To determine whether families would make use of a pediatric-specific inpatient hospice facility for end-of-life care for children. Background: Location of end-of-life care and death are important considerations when treating children with life-limit…