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 1401–1425 of 4332 publications
Paediatric palliative care in the NICU: A new era of integration
We are entering a new era of integration between neonatal medicine and paediatric palliative care, with increasing recognition that the role and skills of palliative care extend beyond care of only the terminally ill infant. This paper addresses the principles…
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…
Palliative care for children: methodology for the development of a national clinical practice guideline
Background: Provision of paediatric palliative care for children with life-threatening or life-limiting conditions and their families is often complex. Guidelines can support professionals to deliver high quality care. Stakeholders expressed the need to update…
Palliative care for children with central nervous system tumors: results of a Spanish multicenter study
Background: Brain tumors represent the most common cause of cancer-related death in children. Few studies concerning the palliative phase in children with brain tumors are available. Objective(s): (i) To describe the palliative phase in children with brain tum…
Palliative care for infants with life-limiting conditions: Integrative review
Background: Infants with life-limiting conditions are a heterogeneous population. Palliative care for infants is delivered in a diverse range of healthcare settings and by interdisciplinary primary healthcare teams, which may not involve specialist palliative …
Palliative care for NICU survivors with chronic critical illness
The sickest of NICU survivors develop chronic critical illness (CCI). Most infants with CCI will leave the NICU using chronic medical technology and will experience repeated rehospitalizations. The unique issues for these NICU graduates- escalating chronic med…
Palliative Care in Children with Inherited Metabolic Diseases: Why does it matter?
Background: Inherited metabolic diseases (IMD) bring considerable burden on the child and family. Challenging areas for health care include the identification of distressing symptoms, prognostic uncertainty, and bereavement. Literature regarding the impact of …
Palliative care referral criteria and application in pediatric illness care: A scoping review
BACKGROUND: Specialty pediatric palliative care services can help to address unmet care needs for children with complex and serious illness. Current guidelines support the identification of unmet palliative care needs; however, it is unknown how these guidelin…
Palliative care services in paediatric oncology centres across Europe: A cross-sectional survey
Background Palliative care (PC) is an integral part of cancer treatment. However, data on service availability is limited in childhood cancers. Aim To describe the availability of PC services in paediatric oncology centres across Europe, and to identify barrie…
Palliative Communication in the Pediatric Intensive Care Unit
Communication is a central aspect of nursing care and is especially important when pertaining to progressive illnesses and end of life. This article reviews basic palliative care terminology and outlines a variety of communication frameworks from the "dos" to …
Parental agency in pediatric palliative care
The study discusses a new approach to parental agency in pediatric palliative care based on an active form of caregiving. It also explores the possibility of a positive conceptualization of parental agency in its relational context. The paper begins with an il…
Parental Ethical Decision Making and Implications for Advance Care Planning: A Systematic Review and Secondary Analysis of Qualitative Literature from England and Wales, Germany, and the Netherlands
Background: Clinicians and parents are expected to make medical treatment decisions in the child's best interests. To reach their decisions, clinicians typically apply a principled approach outlined by Beauchamp and Childress. How parents make ethical decision…
Parental experiences of prenatal education when preparing for labor and birth of infant with a lethal diagnosis
AIM: The aim of this study was to describe the unique experiences of parents facing a Life Limiting Fetal Conditions (LLFC) diagnosis, who chose to continue with their pregnancy, as they prepare for childbirth through individual and group prenatal education. D…
Parental knowledge and views regarding palliative care for children with cancer in Greece
Introduction: Palliative care (PC) refers to interventions aimed to improve the quality of life (QoL) of children and their families by the prevention and relief of suffering. The purpose of this study was to explore the knowledge and views of parents of child…
Parental perspectives on home-based palliative care in children with advanced cancer
Background: Despite the advances in cancer care, a subset of children with cancer will be sent for home-based palliative care. Challenges faced by the family during home-based palliative care are not studied in the Indian context. The purpose of this study is …
Parental perspectives on the clinician's approach to serious illness communication: A qualitative study
OBJECTIVES: To explore the perceptions of parents caring for a child with a life-limiting condition on approaches to communication used by clinicians engaging in routine serious illness communication. METHODS: An exploratory qualitative design was used, employ…
Parent and Provider Perspectives of a Hospital-Based Bereavement Support Program in Pediatric Palliative Care
Abstract
Context: Bereavement is an individuated, nuanced experience, and its expression is different for each parent who has cared for a dying child. Evidence highlights support is valuable to navigate this loss.
Objectives: To evaluate a Bereavement Support…
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…
PARENT EXPERIENCES OF CHILD LOSS AND END-OF-LIFE-CARE IN A PAEDIATRIC INTENSIVE CARE UNIT: A QUALITATIVE STUDY PROTOCOL
BACKGROUND: Death of a child in the Paediatric Intensive Care Unit is a rare event that can occur after failed cardiopulmonary resuscitation efforts, after a brain death diagnosis, or after a decision to limit therapeutic efforts. Nevertheless, even in the cas…
Parent Priorities in End-of-Life Care for Children With Cancer
Importance: Robust quality measures to benchmark end-of-life care for children with cancer do not currently exist; 28 candidate patient-centered quality measures were previously developed. Objective(s): To prioritize quality measures among parents who lost a c…
Parent-Reported Caregiving Roles of Siblings of Children with Inborn Errors of Metabolism
ABSTRACT: Objectives: Research examining sibling caregiving contributions to medically complex pediatric patients, including those with inborn errors of metabolism (IEMs), is limited. We assess caregiving roles and attributes of siblings and hypothesize that t…
Parents' experience of extended viewing in a paediatric hospice: a qualitative study
Background: The rising prevalence of life-limiting conditions in children and young people warrants an evaluation of paediatric palliative care, hospice services and delivered care. Aim: First, this study aimed to develop a deeper understanding of how extended…
Parents' experiences of paediatric palliative care in the community healthcare system: a qualitative study
BACKGROUND: Having a child with a life-limiting illness is a situation that is relatively rare and represents a multidimensional burden on the family. Paediatric palliative care (PPC) aims to maintain the quality of life for the ill child and the family. Tradi…
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…
Patient-centred outcome measure design: the perspectives and preferences of children and young people with life-limiting or life-threatening conditions
Background: Children and young people (CYP) with life-limiting or life-threatening conditions (LLLTC) face specific challenges when self-reporting health outcomes, including communication difficulties and sensitivities around subject matter. No ideal self-repo…