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 2601–2625 of 4332 publications
Long-Term Non-invasive Ventilation in Children: Current Use, Indications, and Contraindications
This review focuses on the delivery of non-invasive ventilation-i.e., intermittent positive-pressure ventilation-in children lasting more than 3 months. Several recent reviews have brought to light a dramatic escalation in the use of long-term non-invasive ven…
Long-term outcomes for children with disability and severe acute malnutrition in Malawi
INTRODUCTION: Severe acute malnutrition (SAM) and disability are major global health issues. Although they can cause and influence each other, data on their co-existence are sparse. We aimed to describe the prevalence and patterns of disability among a cohort …
Mapping Pediatric Palliative Care Development in the WHO-European Region: Children Living in Low-to-Middle-Income Countries Are Less Likely to Access It
Context: Approximately 170,000 children in need of palliative care die every year in Europe without access to it. This field remains an evolving specialty with unexplored development.Objectives: To conduct the first regional assessment of pediatric palliative …
Massage therapy for symptom reduction and improved quality of life in children with cancer in palliative care: A pilot study
Background: For children with cancer in palliative care, pain and worry are common and frequently under-managed, which negatively impacts quality of life (QOL). Massage therapy (MT) can lead to reduced pain in children with chronic illnesses. Children with can…
Maternal Grief: A Qualitative Investigation of Mothers' Responses to the Death of a Child From Cancer
This study explored bereaved mothers' responses to the death of a child from cancer, with a focus on identifying adaptive and complicated grief reactions. To understand the unique meaning of their loss, in-depth interviews were conducted with 13 mothers at two…
Medical and end-of-life decision making in adolescents' pre-heart transplant: A descriptive pilot study
BACKGROUND: Adolescents and young adults undergoing heart transplantation experience risks of morbidity and mortality both pre- and post-transplant. To improve end-of-life care for this population, it is necessary to understand their medical and end-of-life de…
Medical complications in a telemedicine home care programme for paediatric ventilated patients
INTRODUCTION: Advances in paediatric medicine have increased survival rates for patients with severe chronic illnesses, of which the most complex are ventilator-dependent children (VDCs). Although home care improves their quality of life, morbidity and mortali…
Metasynthesis of Factors That Influence Parents' Participation in Pain Management for Their Infants in the NICU
OBJECTIVE: To metasynthesize the results of qualitative studies on the factors that affect parents' participation in pain management for their infants during procedures in the NICU. DATA SOURCES: We conducted a literature search for articles published from 197…
Methadone for Cancer Pain in Pediatric End-of-Life Care
BACKGROUND: The goal of adequate pain control becomes increasingly salient for children with cancer and their families as the patients approach the end of life. Methadone is one option that is particularly desirable in end-of-life care given its long duration …
Mobile Health-Collected Biophysical Markers in Children with Serious Illness-Related Pain
Context: There is an ongoing established need to develop engaging pain assessment strategies to provide more effective individualized care to pediatric patients with serious illnesses. This study explores the acceptability of wireless devices as one option. Ob…
Moral Distress in the Neonatal Intensive Care Unit: What Is It, Why It Happens, and How We Can Address It
Moral distress is prevalent in the neonatal intensive care unit (NICU), where decisions regarding end-of-life care, periviable resuscitation, and medical futility are common. Due to its origins in the nursing literature, moral distress has primarily been repor…
Moral Distress of Clinicians in Canadian Pediatric and Neonatal ICUs
OBJECTIVE: To quantify moral distress in neonatal ICU and PICU clinicians and to identify associated factors. DESIGN: A national cross-sectional survey of clinicians working in an neonatal ICU or PICU. Moral distress was assessed with the Moral Distress Scale-…
Mothers of angels: (re)living the death of the child as a coping strategy
Objective: To describe the experiences lived by mothers facing the death of their children. Method: A qualitative, exploratory and descriptive research conducted in Guarapuava-PR, with six participants of the "Marias" group that brings together mothers who los…
Movement disorders in inherited metabolic diseases in children
Movement disorders are one of the important neurological manifestations of inherited metabolic disorders. Important clues to the presence of an underlying inborn error of metabolism are early onset, presence of neuroregression or degeneration, parental consang…
My child's legacy: A mixed methods study of bereaved parents and providers' opinions about collaboration with NICU teams in quality improvement initiatives
Objective Although stakeholders' participation in healthcare is increasingly recommended, bereaved parents are often excluded for perceived potential risks to them. The objective of this study is to describe the ongoing involvement and the perspectives of bere…
National Children's Hospitals Bereavement Network standards for supporting families following the death of a child
In England, a child death review process must be undertaken when a child dies, regardless of the cause of death. Scotland and Wales have their own version of the child death review process, while it is the author's understanding that Northern Ireland are still…
National Institute of Nursing Research and MedlinePlus Team Up to Offer a Palliative Care Text Campaign (QI632)
Objectives: * Apply the principles of plain language to deliver easy-to-understand, evidence-based palliative care information to those with serious illnesses and their families. * Utilize common forms of telecommunications (text messaging and email) to reach …
Navigator-Based Intervention to Support Communication in the Pediatric Intensive Care Unit: A Pilot Study
BACKGROUND: Communication in the pediatric intensive care unit (PICU) between families and the health care team affects the family experience, caregiver psychological morbidity, and patient outcomes. OBJECTIVE: To test the feasibility of studying and implement…
Neonatal end-of-life decisions and ethical perspectives
End-of-life decisions are usually required when a neonate is at high risk of disability or death, and such decisions involve many legal and ethical challenges. This article reviewed the processes of ethical decision-making for severely ill or terminal neonates…
Neonatal End-of-Life Symptom Management
Purpose of review: Despite advances in technology and treatment options, over 15,000 neonates die each year in the United States. The majority of the deaths, with some estimates as high as 80%, are the result of a planned redirection of care or comfort measure…
Neonatal palliative care: perception differences between providers
Objective: The purpose of this study was to describe differences and identify education gaps in the perception of palliative care (PC) between neonatal care providers in a Level IV Neonatal intensive care unit. Study design: This is a descriptive survey mixed …
Neonatologists and neonatal nurses have positive attitudes towards perinatal end-of-life decisions, a nationwide survey
AIM: Perinatal death is often preceded by an end-of-life decision (ELD). Disparate hospital policies, complex legal frameworks and ethically difficult cases make attitudes important. This study investigated attitudes of neonatologists and nurses towards perina…
No impact of previous evidence advocating openness to talk to children about their imminent death
Communication is as important as the drug and the knife in medical care, particularly when patients are facing life-threatening conditions. However, the ability to communicate effectively has been commonly associated with strong emotional barriers among health…
Noninvasive Ventilation in Palliative Care and Ethical Dilemma
Significant difference exists between validated indications for noninvasive ventilation (NIV) use in children and current real life practice. Lately, dedicated centers have reported exponential growth of NIV use in children and adolescents. Upper airway obstru…