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 626–650 of 4332 publications
Parents' Experiences of Family-Centred Care in Home-Based Paediatric Care of Their Child With Life-Limiting Illness: A Qualitative Descriptive Study
Aim: To describe parents' experiences of family-centred care in home-based paediatric care of their child with a life-limiting illness.
Design: A qualitative descriptive study with semi-structured interviews.
Methods: The purposive sample of parents (n = 11)…
Parents' experiences of paediatric end-of-life care in the UK: a multisite qualitative study
Objectives: Despite the marked improvement in child mortality over the last two decades, more than 7 million infants, children and young people still die worldwide every year. In the UK, four National Health Service settings care for more than 60% of the child…
Parents’ experiences of the financial and employment impacts of their child receiving end-of-life care: a national qualitative study
Bereaved parents are at higher risk of poor mental and physical health outcomes than people bereaved under other circumstances. These challenges are exacerbated by the continued effects on parents’ working lives and the financial strain of a child receiving en…
Parents' lived experience of support through their neonate's end of life and grief journey: An interpretative phenomenology study
Medical and pharmacological advancements have influenced the ability to treat acutely ill neonates. However, complications of prematurity mean that death is unpreventable in some cases. The aim of this study was to explore parents' lived experiences of end of …
Partnering with caregivers in bereavement research: Why it matters and best practices
Bereaved caregivers are at risk of poor mental and physical health outcomes following the death of their child. However, their voices are often excluded from the very end-of-life and bereavement research aimed at improving outcomes during this vulnerable time.…
Patient Acceptability of the First Integrative Pediatric Oncology Unit in Spain-The Pediatric Cancer Center Barcelona Experience: A Retrospective Study
Pediatric cancer patients and their families are increasingly combining conventional treatment with complementary therapies. These therapies are not covered by most public healthcare systems, and Spain is not an exception. To address this need, the Pediatric C…
Pediatric Advance Care Planning and Adolescent Preparedness and Quality of Life: An RCT
To evaluate the efficacy of Family-Centered Advance Care Planning for Teens With Cancer (FACE-TC) on adolescents’ quality of life.A clinical trial randomized adolescent-family dyads at a 2:1 ratio to either FACE-TC or control. FACE-TC dyads received 3 weekly 6…
Pediatric complex chronic and life-limiting conditions in the Basque public health system: cross-sectional prevalence study
Background: The survival of children and adolescents with complex chronic conditions (CCCs) and/or life-limiting or life-threatening conditions (LLCs) is increasing, while estimating their prevalence is complex and limited. This study aims to describe the prev…
Pediatric Hematology–Oncology Provider Attitudes and Beliefs About the Use of Integrative Modalities for Their Patients: A Cross-Sectional Survey
Purpose: Children with cancer suffer from physical and psychological symptoms. Integrative medicine modalities (IMMs) for symptom management are increasingly popular, but whether these are acceptable to pediatric hematology–oncology (PHO) providers remains unk…
Pediatric Home-Based Palliative Care and Hospice: Characterizing and Comparing the Populations
Context: Home-based palliative care (HBPC) and hospice programs offer support for children with complex life-shortening conditions. However, there is little comparison of the characteristics and care trajectories of children and young adults enrolled in HBPC v…
Pediatric Home Hospice as a National Service in Israel
Background: Pediatric home hospice allows children with life-limiting illnesses to receive end-of-life care in familiar surroundings, supported by interprofessional teams. Despite recognized benefits, utilization remained limited in many countries, and few stu…
Pediatric nurses' perceptions of obstacles and supportive behavior's in end-of-life care: A systematic literature review
Introduction: Pediatric end-of-life care is a complex and emotionally challenging aspect of healthcare that requires specialized knowledge, skills, and support. Pediatric nurses are often at the forefront of providing care to terminally ill children and their …
Pediatric oncology caregiving as narrative repair: Restor(y)ing disrupted
Drawing on Arthur Frank's conceptualization of narrative repair, we consider how pediatric oncology nurses restore and re-story the narratives of patients and families whose biographies have been thrown off course by the diagnosis and death of a child from can…
PEDIATRIC PALLIATIVE CARE AND LANGUAGE DIFFERENCES AT END-OF-LIFE CARE
INTRODUCTION: The goal of palliative care is to improve the quality of life for both patients and caregivers facing challenges associated with serious illness. Palliative care can be introduced at any time, and it is associated with improved outcomes, reduced …
Pediatric Palliative Care Education in Child Neurology Residency: A National Needs Assessment
Background: Child neurologists require primary palliative care (PC) skills to care for patients with high symptom burdens and variable prognoses. The existing scope of PC education in child neurology training is unclear. We conducted a national survey-based ne…
Pediatric palliative care in low-income and middle-income countries: A systematic review on current status and future directions
Objective
Pediatric palliative care aims to improve the quality of life for children afflicted with life-threatening illnesses and differs significantly from adult palliative care. Pediatric palliative care activities in low- and middle-income countries are in…
Pediatric palliative care in neonates: a cross-sectional study from a high-complexity hospital in Latin America. Neopalped study
Background: Pediatric palliative care (PPC) aims to alleviate suffering, improve quality of life, and facilitate decision-making for patients, families, and healthcare professionals. Specifically, PPC in neonatal patients influences their quality of life by co…
Pediatric palliative care in patients with brain tumors: Timing, activation, and management of acute events
Introduction:
The highest percentage of our patients referred to Pediatric Palliative Care (PPC) are those with brain tumors. Of these, we analyzed PPC activation modes and timing, occurrence of acute events during the period of PPC activation, and the time be…
Pediatric palliative care in patients with cardiovascular disease: The basics of why, when, where, who and how
Abstract
Background
Pediatric Palliative Care (PPC) has been shown to offer a wide berth of supportive services for families as they navigate life with pediatric heart disease. PPC assists families in medical decision making, symptom management, emotional and …
Pediatric Palliative Care Nurse Practitioners: Catalysts of Care in a Liminal Space
The nurse practitioner plays an important and unique role in delivery of high-quality pediatric palliative care. The combination of their nursing roots, advanced education, and training makes the pediatric nurse practitioner well-suited to excel in the domains…
Pediatric Palliative Care Patient Transfers of Location at End-of-Life: A 7-Year Retrospective Study
Background/objectives: Transferring pediatric palliative care patients nearing the end of life (EOL) between care locations is clinically and logistically complex, potentially causing significant stress for families and patients. This study aimed to determine …
Pediatric Palliative Care Subcompetencies for Pediatric Critical Care Medicine Fellowship Trainees
Objectives:
Integration of pediatric palliative care (PPC) and pediatric critical care medicine (PCCM) is essential in providing high-quality patient care. To date, no standardized or recommended framework for educating PCCM fellowship trainees in palliative c…
Pediatric Palliative Care Utilization Among U.S. Children Following Out-of-hospital Cardiac Arrest
Pediatric palliative care (PPC) is integral component of comprehensive care provided to critically ill children and teens (1). Little is known about the utilization of PPC following Pediatric Out-of-Hospital Cardiac Arrest (OHCA) in the United States.
Peds OncoTalk: A Curriculum to Teach Communication Skills to Pediatric Hematology/Oncology Fellows
Background: Peds OncoTalk is a novel curriculum for Pediatric Hematology/Oncology (PHO) fellows to learn key communication skills to deliver cancer care using validated principles. Interpersonal and communication skills are core competencies for Accreditation …
Perceived barriers to paediatric palliative care in a Palestinian children's hospital
Abstract
Background: This study aimed to identify barriers to paediatric palliative care provision at one Palestinian paediatric hospital, elucidate reasons for the barriers, provide recommendations for enhancing care and identify topics for future research in…