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 1526–1550 of 4332 publications
"They were here, and they still matter": A qualitative study of bereaved parents legacy experiences and perceptions
BACKGROUND: Legacy building interventions are used in pediatric healthcare settings to help families cope with difficult healthcare experiences and typically reserved for intentional use at or near the end of a child's life. However, little is known about how …
Thirty-day mortality as a metric for palliative radiotherapy in pediatric patients
Purpose of review: Thirty-day mortality (30DM) is an emerging consideration for determining whether terminally ill adult patients may benefit from palliative radiotherapy (RT). However, the efficacy and ethics of delivering palliative RT at the end of life (EO…
Timing of Pediatric Palliative Care Consults in Hospitalized Patients with Heart Disease
Pediatric palliative care (PPC) provides an extra layer of support for families caring for a child with complex heart disease as these patients often experience lifelong morbidities with frequent hospitalizations and risk of early mortality. PPC referral at th…
Transitioning from paediatric to adult healthcare: Exploring the practices and experiences of care providers
Complex paediatric health conditions are increasingly associated with survival into adulthood resulting in more youth with complex care needs (CCN) transitioning from paediatric to adult healthcare. Current transition practices, when present, are disorganized,…
Understanding Adult Hospices Caring for Children in California, 2018-2021
In areas where there are absences of pediatric hospice care, adult hospices are often asked to provide hospice care for children. Little is known about these adult hospices. The purpose of our study was to describe the characteristics of adult hospices in Cali…
Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative study
Purpose: To describe the process of delivery of pediatric palliative care from the perspective of a pediatric interdisciplinary team and the children's parents.
Methods: A qualitative descriptive case study was conducted. Purposeful sampling took place within…
Understanding the Relationship Between Peer Support and Grief/Growth in Chinese Shidu Parents: The Roles of Internalized Stigma and Stigma Resistance
In China, families who have lost their only child are called shidu families. Support from similar others, or peer support, can help bereaved individuals adapt by reducing negative consequences and promoting positive changes. However, no research has examined t…
Unfolding parental knowledge, attitudes, and beliefs toward palliative care for children with cancer
Unmet Needs of Palliative Care Among Iranian Children with Cancer and Their Families: A Qualitative Study
Background: Palliative care is one of the primary rights of children with cancer and their families. Identifying the unmet needs of palliative care for these children is important in providing high-quality care. Objectives: The present study aimed to exploring…
Unmet palliative care needs of a child with cancer in Indonesia
Key points
Childhood cancer survival varies greatly between high-income (80%) versus Low and middle-income countries (LMIC) (<20%). To bridge this gap, provision of aggressive curative treatment has been prioritized in latter countries. Palliative care (PC), b…
Use Of Buccal Fentanyl As A Breakthrough Opioid For Symptom Management In Patients Receiving Palliative Care
Objectives Using transmucosal fentanyl as an opioid for rapid acting, needle-free breakthrough relief of symptoms is established within paediatric palliative medicine.1 2 Medication administration via the buccal route is commonly used in paediatric palliative …
Vaccine preventable diseases in pediatric palliative care - a multicenter cross-sectional study
Context: Vaccine preventable diseases lead to distressful symptoms and complications among pediatric patients receiving specialized home palliative care. There was no data on the vaccination compliance.Objective: The objective was to determine the vaccination …
[Validation of the European Portuguese Version of a Pediatric Palliative Needs Assessment Tool: The Pediatric Palliative Screening Scale]
INTRODUCTION: The Pediatric Palliative Screening Scale (PaPaS Scale) was designed to help professionals to identify life-limiting or life-threatening children/young people with complex chronic conditions who would benefit from pediatric palliative care and fac…
Vulnerabilities experienced by family members/caregivers of children with chronic conditions
The objective was to know the vulnerabilities experienced by family members/caregivers of children with a chronic. Qualitative research supported by the theoretical framework of the French philosopher Rosello Un which 15 family members/caregivers of children w…
Vulnerability in women primary caregivers of children in palliative care due to intimate partner violence in a pediatric hospital in Mexico
BACKGROUND: Women are the primary caregivers of children in palliative care. Research has shown that the presence of intimate partner violence at home exacerbates the vulnerability of the caregiver. Current statistics indicate a high prevalence of violence in …
“We decide according to the protocol”: Humanitarian Healthcare Workers’ Moral Experiences of Palliative Care-Related Decision-Making in Cox’s Bazar, Bangladesh
Introduction:
919,000 Rohingya refugees live in overcrowded camps in Cox’s Bazar, Bangladesh after fleeing violence in Myanmar. The Médecins Sans Frontières (MSF) Goyalmara Hospital offers the highest level of pediatric and neonatal care serving the Rohingya r…
What Are the Psychosocial Needs of Adolescents and Young Adults with Cancer? A Systematic Review of the Literature
Adolescents and young adults with cancer (AYACs) have become recognized as a unique group in recent years. The unique developmental context and related challenges of being a young person with a cancer diagnosis can lead to a distinct and diverse set of psychos…
What constitutes 'good quality care' from the perspectives of children and young people with life-limiting and life-threatening conditions?
Objectives Children with life-limiting and life-threatening conditions (LLLTC) have complex needs and are high users of health and social care. Several quality standards exist that highlight the importance of addressing the needs and wishes of children and you…
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…
"What Would Give Her the Best Life?": Understanding Why Families Decline Pediatric Home Ventilation
Background: Families who must decide about pediatric home ventilation rely on the clinicians who counsel them for guidance. Most studies about pediatric home ventilation decisions focus on families who opt for this intervention, leaving much unknown about the …
Whispers in the waiting room
Kim, aged 3 years, lies asleep, waiting for a miracle. Outside her room, the nurses on the night shift pad softly through the half-lighted corridors, stopping to count breaths, take pulses, or check the intravenous pumps. In the morning, Kim will have her hear…
Windmills and Pediatric Palliative Care
A Review of Pediatric Care: A Model for Exemplory Practice
This book i sbased on research across three settings where children with complex, chronic, and potentially life-threatening conditions are often cared for: neonatal intensive care, oncology units and …
Withholding life support for children with severe neurological impairment: Prevalence and predictive factors prior to admission in the PICU
Our study aimed to evaluate the prevalence and predictive factors of withholding life support for children suffering from severe neurological impairment before admission to the pediatric intensive care unit (PICU).
Method: Children under 18 years of age with …
Yesterday a Child, Today a Grown-Up: Reflections on the Patient, Family, and Team Experience of an Abrupt, Non-Linear Transition from Pediatric to Adult Medicine for Young Adults with Serious Illness (FR210A)
Outcomes:
1. Reflect on the experience of young adults and families facing serious illness as they transition from pediatric to adult medicine, including the impact on medical decision making and end-of-life care
2. Describe challenges and strategies for pro…