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 1226–1250 of 4332 publications
Assessing the Need for Pediatric Palliative Care in the Six Arab Gulf Cooperation Council Countries
Background: Palliative care is an essential element of universal health coverage. However, palliative care services, particularly pediatric palliative care (PPC) services, are still inadequately developed in many countries, not least members of the Gulf Cooper…
Assessing the suitability of the Carer Support Needs Assessment Tool (CSNAT-Paediatric) for use with parents of children with a life-limiting condition: A qualitative secondary analysis
The demands of caring for a child with a life-limiting condition can have a profound impact on parents' health and wellbeing. Currently, there is no standard procedure for identifying and addressing the support needs of these parents.
Aim: To assess the suita…
Assessing well-being in pediatric palliative care: A pilot study about views of children, parents and health professionals
OBJECTIVES: Our research aims to compare the perception that children in the pediatric palliative care setting have of their emotional well-being, or that expressed by the parents, with the perception held by the professionals involved in their care.
METHOD(S)…
Associations between Music Therapy, Pain and Heart Rate for Children Receiving Palliative Care
Abstract
Music therapy (MT) is a widely used non-pharmacological intervention in pediatric health care, an integral part of pediatric palliative care (PPC). Yet, there is a lack of evidence of efficacy, and best practices are not well established. The nature a…
A Systematic Review of Educational Interventions to Equip Health and Social Care Professionals to Promote End-of-Life Supportive Care when a Parent with Dependent Children is Dying with Cancer
OBJECTIVES: This systematic review aimed to determine the content, mode of delivery, assessment, and outcomes of educational interventions to equip health and social care professionals (HSCPs) when delivering end-of-life (EoL) supportive care for parents dying…
'A team around the child' professionals' experiences of unmet needs, access and expectations in children's palliative care services, a phenomenological study in the UK
This study aims to understand the experiences of professionals involved in caring for families of children with life-limiting illnesses to ascertain unmet needs, access issues and expectations of services.A phenomenological approach comprising semi-structured …
Availability of bereavement support following traumatic pediatric death in a large metropolitan area
Following an unexpected pediatric death, survivors undergo unique trauma. Medical examiners (MEs) evaluate most of these deaths. We evaluated the bereavement support available to survivors in the Chicagoland area following a pediatric death. We had two goals: …
Balancing pandemic public health restrictions and family support at the end of life: palliative care and bereavement experiences of parents whose child died during the COVID-19 pandemic
Background: Little is known about the impact of the COVID-19 pandemic on families of children with chronic life-limiting conditions who died during the COVID-19 pandemic.
Methods: In this qualitative study, parents of a child (< 18 years) who died during the …
Barriers to Pediatric Palliative Care: Trainee and Faculty Perspectives Across Two Academic Centers
Objective: Barriers to palliative care for children with serious illness include system constraints and vastly different training and attitudes toward palliative care. This study aimed to explore trainee and faculty physician perceptions of barriers to palliat…
Barriers to the spiritual care of parents taking care of their child with a life-limiting condition at home
The changes that parents face when caring for a child with a life-limiting condition at home can affect them on a spiritual level. Yet, indications remain that parents do not feel supported when dealing with spiritual issues related to caring for a severely il…
Bereaved mothers' experience of expressing and donating breast milk: An interpretative phenomenological study
Abstract
Perinatal loss is a devastating event for any mother. What is often overlooked is a mothers continued ability to lactate following the death of her child. Donor breast milk is a commodity highly sought after given its value for feeding sick babies res…
Butterflies and Ribbons: Supporting Families Experiencing Perinatal Loss in Multiple Gestation
Introduction: In neonatology, multiple pregnancies are common. Unfortunately, it is not rare for one baby to die. Communication with parents in these circumstances has been demonstrated to be sub-optimal. Methods: Two educational programs were evaluated with p…
Cannabinoids for symptom management in children with cancer: A systematic review and meta-analysis
Background: Despite the widespread use of medical cannabis, little is known regarding the safety, efficacy, and dosing of cannabis products in children with cancer. The objective of this study was to systematically appraise the existing published literature fo…
Challenges Experienced by Nurses in Providing Pediatric Palliative Care: An Interpretive Phenomenological Analysis
Objectives: Pediatric leukemia is the most common cancer among children younger than 14 years of age. Children with leukemia require palliative care as additional support from the health care team. Providing palliative care to children is challenging. Thus, th…
Changes in Relationships in Bereaved Families: Perspectives of Mothers
The loss of a child greatly affects the dynamics of interpersonal relationships in bereaved families. This study explored the relationships in bereaved Korean families from the perspectives of mothers after the death of a child due to cancer. We conducted in-d…
Changes in the End-of-Life Process in Patients with Life-Limiting Diseases through the Intervention of the Pediatric Palliative Care Team
Kyungpook National University Children's Hospital initiated pediatric palliative care (PPC) services in January 2019, focusing on children and adolescents with life-limiting conditions (LLC). A study examined changes in the end-of-life processes in patients wi…
Characteristics of Critically Ill Infants at the End of Life in the Neonatal Intensive Care Unit
Objectives: About 16,000 infants die in the neonatal intensive care unit (NICU) each year with many experiencing invasive medical treatments and high number of symptoms.1 To inform better management, we characterized diagnoses, symptoms, and patterns of care a…
Children's complex health: Maternal experiences of care and decision making
An increasing number of children with complex life-limiting and life-threatening conditions are being cared for at home by their parents. Negative impacts on maternal health are now being recognised. This study sought to voice parental experiences to determine…
Children's understanding of dying and death: A multinational grounded theory study
OBJECTIVES: The ways in which children understand dying and death remain poorly understood; most studies have been carried out with samples other than persons with an illness. The objective of this study was to understand the process by which children directly…
Children with palliative care needs in Papua New Guinea, and perspectives from their parents and health care workers: a qualitative study
Introduction: The World Health Organisation defines paediatric palliative care (PPC) as caring for the child's body, mind, and spirit, and giving support to the family. In life-limiting conditions it is important that palliative support can be provided even wh…
Chinese Neonatal Nurses' Lived Experiences of Providing End-of-Life Care in the NICU: A Descriptive Phenomenological Study
Background: Although end-of-life care (EOLC) has been well-studied, the experience of neonatal intensive care unit (NICU) nurses in China, where little EOLC training is provided, requires further investigation.
Purpose: To explore the lived experience of EOLC…
Clinical and genetic characteristics of Tunisian children with infantile nephropathic cystinosis
Background: Nephropathic cystinosis is an autosomal recessive disease caused by a mutation in the CTNS gene which encodes cystinosin, a lysosomal cystine transporter. The spectrum of mutations in the CTNS gene is not well defined in the North African populatio…
Clinical implications of artificial nutrition and hydration withdrawal in children at the end of life
Introduction: In the literature on adult patients, there is evidence that continuing artificial nutrition and hydration (ANH) during end of life is associated with numerous adverse effects. The withdrawal of ANH could lead to a reduction in these negative effe…