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 1951–1975 of 4332 publications
Advance care planning and informed consent in neonatology: A qualitative study on family and health care professional experiences
Background: The most commons situations of neonatal palliative care setting are 1) perinatal palliative care (do not reanimate order) and neonatal palliative care (limitations of intensive care). In this setting, Pediatric palliative care (PPC) has to adapt bo…
Advance care planning for adolescents with cancer and their parents: study protocol of the BOOST pACP multi-centre randomised controlled trial and process evaluation
BACKGROUND: Research has highlighted the need for evidence-based interventions to improve paediatric advance care planning (pACP) in adolescents with cancer. Although adolescents express the desire and ability to share their values, beliefs and preferences for…
Advance Directives for Adolescents and Young Adults Living With Neuromuscular Disease: An Integrative Review of the Literature
The use of advance directives is an important component in helping individuals living with chronic and/or life-threatening illnesses establish goals of care and make decisions regarding care at the end of life. Advance care planning may help achieve enhanced h…
A Framework for Pediatric Intensivists Providing Compassionate Extubation at Home
For families facing end-of-life decisions for their critically ill children, compassionate extubation at home is a valuable service that pediatric intensivists can provide. Compassionate extubation at home is resource intensive and can be logistically challeng…
A good death in the child with life shortening illness: A qualitative multiple-case study
BACKGROUND: Understanding what makes a 'good death' in the child with life shortening illness is important, as it informs appropriate and effective end-of-life care. Above play, peer contact and opportunities for assent, prior literature review found meeting n…
A National Study to Compare Effective Management of Constipation in Children Receiving Concurrent Versus Standard Hospice Care
Constipation is a distressing and uncomfortable symptom children experience at end of life. There is a gap in knowledge about how different approaches to hospice care delivery might improve pediatric symptom management of constipation. The purpose of this stud…
An ethical rationale for perinatal palliative care
Perinatal palliative care has grown out of both an historical necessity in attending to babies in the NICU that face difficult odds of survival, the increasing technology that may avail life-extending, yet technology-dependent, care, and the growth of fetal di…
Angels in the Clouds: Stillbirth and Virtual Cemeteries on 50 YouTube Videos
Today every aspect of our life is published and shared online, including grief. The virtual cemeteries and social networks' use could be considered as a new modern mortuary ritual. Starting from the keyword stillbirth, 50 videos published on YouTube since 2008…
An Interdisciplinary Hospital-Based Committee to Improve Pediatric Bereavement Care
Although frequently overshadowed by adult mortality rates and bereavement care needs, the death of a child can significantly jeopardize the physical, psychosocial, and emotional health of surviving parents, caregivers, and family members. Unfortunately, resear…
An interprofessional team-based intervention to address barriers to initiating palliative care in pediatric oncology: a multiple-method evaluation of feasibility, acceptability, and impact
CONTEXT: Many children with advanced cancer are not referred to palliative care despite both professional recommendations to do so and bereaved parental preference for earlier support from sub-specialty palliative care. OBJECTIVES: To assess the feasibility, a…
A novel combined resilience and advance care planning intervention for adolescents and young adults with advanced cancer: A feasibility and acceptability cohort study
BACKGROUND: Few evidence-based psychosocial programs have been tested among adolescents and young adults (AYAs) with advanced cancer (AC), and early advance care planning (ACP) in this population is rare. The authors aimed to determine the feasibility and acce…
Antenatal prediction models for short- and medium-term outcomes in preterm infants
Introduction: In extremely and very preterm infants, predicting individual risks for adverse outcomes antenatally is challenging but necessary for risk-stratified perinatal management and parents' participation in decision-making about treatment. Our aim was t…
A photovoice study on the bereavement experience of mothers after the death of a child
This study explored the bereavement experience of mothers after losing a child to cancer in Korea, using photovoice. The mothers took photos reflecting five subject areas they selected: (a) if I had one more day with my child, (b) memories with my child, (c) d…
A Qualitative Study Describing Pediatric Palliative Care in Non-Metropolitan Areas of Illinois
BACKGROUND: There is little information about providing pediatric palliative care (PPC) in non-metropolitan areas. OBJECTIVE: Describe the strengths of and challenges to delivering PPC in non-metropolitan communities and identify opportunities to improve care …
AquaScouts: ePROs Implemented as a Serious Game for Children With Cancer to Support Palliative Care
MyPal is a European initiative focusing on the use of the electronic patient reported outcome (ePRO) measures to enhance patient engagement in palliative cancer care via digital self-reporting palliative care for patients with cancer. As a part of its approach…
A quest for meaning: A qualitative exploration among children with advanced cancer and their parents
OBJECTIVE: Meaning-making may assist individuals in adaptation to stressful life events, particularly bereavement. However, few studies have examined meaning-making among pediatric populations with advanced illness to understand how this process unfolds before…
A Retrospective Examination of Home PCA Use and Parental Satisfaction With Pediatric Palliative Care Patients
INTRODUCTION: Home Patient-Controlled Analgesia (PCA) is an effective and often preferred therapy for the treatment of chronic pain symptoms in the pediatric palliative care patient. There is little previous research of patient experience with Home PCA. The pu…
A Review of pediatric Palliative Care Program in a Regional Hospital in ong Kong
Background Paediatric palliative care (PPC) focuses on the enhancement of quality of life for children with life-limiting diseases and support to their families. This study reviewed the paediatric palliative care program in Hong Kong (HK). Objectives Reviewed …
A Scoping Review of Perinatal Palliative Care: Allowing Parents to Be Parents
OBJECTIVE: -Perinatal palliative care (PPC) is an option for patients who discover that their infant has a life-limiting fetal condition, which decreases the burden of the condition using a multidisciplinary approach. STUDY DESIGN: -This review discusses the l…
Assessing the impact of training using the serious illness conversation guide-pediatric adaptation (SICG-PEDS) on clinician-family communication
Background: An essential component of high-quality and patient-centered care for children with life-limiting conditions is eliciting families' values, priorities and goals about their child's future health care. The Serious Illness Conversation Guide - Pediatr…
Assessing the quality of deliberative stakeholder consultations involving allied health professionals in pediatric palliative care and hematology/oncology in Canada
BACKGROUND: In this paper we assess the quality of six deliberative stakeholder consultations regarding the implementation of a precision diagnostic for life-threatening pediatric brain tumors. Decision makers who base policy recommendations on the outputs of …
Assessment of parent understanding in conferences for critically ill neonates
Objectives
This study aimed to characterize the use and impact of assessments of understanding in parent-clinician communication for critically ill infants.
Methods
We enrolled parents and clinicians participating in family conferences for infants with neurolo…
Assessment of physician perceptions of pediatric palliative care for children with cancer in Latin America.
10053Background: While great strides have transpired in pediatric cancer management in high-income countries (HICs), more than 80% of all children with cancer live in low-and middle-income countries (LMICs),where fewer than 20% will be cured. The World Health …
Assessment of the Implementation of Pharmacogenomic Testing in a Pediatric Tertiary Care Setting
Pharmacogenomic (PGx) testing provides preemptive pharmacotherapeutic guidance regarding the lack of therapeutic benefit or adverse drug reactions of PGx targeted drugs. Pharmacogenomic information is of particular value among children with complex medical con…
A Stakeholder-Driven Qualitative Study to Define High Quality End-of-Life Care for Children With Cancer
Context
Among adults with cancer, measures for high quality end-of-life care (EOLC) include avoidance of hospitalizations near end of life. For children with cancer, no measures exist to evaluate or improve EOLC, and adult quality measures may not apply.
Objec…