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 2426–2450 of 4332 publications
Characterization of Death in Infants With Neonatal Seizures
Background: Neonatal seizures are associated with death and neurological morbidity; however, little is known about how neonates with seizures die. Method(s): This was a prospective, observational cohort study of neonates with seizures treated at seven sites of…
Charting the Territory: End-of-Life Trajectories for Children with Complex Neurological, Metabolic and Chromosomal Conditions
OBJECTIVES: For parents, family or clinicians of children with rare, life-threatening conditions there is little information regarding likely symptoms, illness trajectory and end-of-life care. This descriptive analysis of a bereaved cohort recruited in the Cha…
Childhood cancer in Latin America: from detection to palliative care and survivorship
BACKGROUND: Treatment options for childhood cancer have improved substantially, although in many low- and middle-income countries survival is lagging behind. Integral childhood cancer care involves the whole spectrum from detection and diagnosis to palliative …
Children at the Intersection of Pediatric Palliative Care and Child Maltreatment: A Vulnerable and Understudied Population
CONTEXT: Concerns for child maltreatment can complicate the provision of pediatric palliative care (PPC). Little is known about the vulnerable population of children with life-threatening conditions involved with PPC and state Child Protective Services (CPS) o…
Children's Palliative Care; the identified Learning Needs of Paediatricians
Aim To determine baseline learning needs of Paediatricians in Ireland when caring for children with palliative care needs. Methods A questionnaire based online survey was conducted. Results One hundred and fourteen paediatricians responded to the survey, the m…
Children With Complex Chronic Conditions: A Multifaceted Contemporary Medical Challenge Not Restricted to PICUs
Widespread primary care policies coupled with the advent of tertiary and quaternary care facilities promoted an impressive reduction of pediatric mortality in the last 50 years worldwide. The better care provided to survivors led to a significant increase in t…
Clinical Correlates of Opioid Prescription Among Pediatric Patients With Chronic Pain
INTRODUCTION: Up to 17%-20% of pediatric patients with chronic pain are prescribed opioid pharmacotherapy and face an increased risk of opioid misuse in adulthood. Little is known about the way clinical presentation may influence which children with chronic pa…
Clinical Supervision for Support Workers in Paediatric Palliative Care: A Literature Review
Providing home care to children with complex physical health needs is an emotionally challenging role. Extant literature and documents such as the Cavendish Review (2013) have reported that a large proportion of care for this population is carried out by non-r…
Close to Home: Perinatal Palliative Care in a Community Hospital
BACKGROUND: Advances in prenatal testing and diagnosis have resulted in more parents learning during pregnancy that their child may die before or shortly after birth. These advances in testing and diagnosis have also resulted in more parents choosing, despite …
Communication and Cultural Sensitivity for Families and Children With Life-Limiting Diseases: An Informed Decision-Making Ethical Case in Community-Based Palliative Care
The health care decisions of families of children who have life-limiting genetic diseases are impacted by multiple factors including religious and ethical values, education and knowledge, emotional trauma, availability of support, and accessibility of care. Pa…
Communication between neonatologists and parents when prognosis is uncertain
OBJECTIVE: When an infant's prognosis is uncertain, communication between neonatologists and parents surrounding goals of care and decision-making can be challenging. This qualitative study explored communication between neonatologists and parents to discover …
Communication between parents and well-siblings in the context of living with a child with a life-threatening or life-limiting condition
Effective parent-child communication may serve to buffer the potential negative impacts of stressful situations on a child. Children who have a brother or sister with a life-threatening or life-limiting medical condition may turn to their parents for help with…
Communication in Pediatric Oncology: A Qualitative Study
BACKGROUND: When children are seriously ill, parents rely on communication with their clinicians. However, in previous research, researchers have not defined how this communication should function in pediatric oncology. We aimed to identify these communication…
Communication of Death in the Context of Infant-Child Donation: Best Practices for Creating Family Interview for Organ and Tissue Donation
OBJECTIVE: To analyze evidence capable of supporting best practices available in the literature to create dialogues about organ and tissue donation with parents of deceased children and adolescents. METHODS: An integrative literature review performed using Sco…
Community health workers in palliative care provision in low-income and middle-income countries: a systematic scoping review of the literature
Background: Community health workers (CHWs) are currently deployed in improving access to palliative care in a limited number of low-income or middle-income countries (LMICs). This review therefore aimed to document evidence from LMICs regarding (1) where and …
Comorbidity patterns and socioeconomic inequalities in children under 15 with medical complexity: a population-based study
BACKGROUND: Children with medical complexity (CMC) denotes the profile of a child with diverse acute and chronic conditions, making intensive use of the healthcare services and with special health and social needs. Previous studies show that CMC are also affec…
Comparison of child self-report and parent proxy-report of symptoms: Results from a longitudinal symptom assessment study of children with advanced cancer
PURPOSE: This report represents a subanalysis of data from a primary study and addresses a gap in understanding the similarities and differences of symptom reporting between children with advanced cancer and their parents. The objectives of this subanalysis we…
Comparison of End-of-Life Care Practices Between Children With Complex Chronic Conditions and Neonates Dying in an ICU Versus Non-ICUs: A Substudy of the Pediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) Project
OBJECTIVES: To describe and compare characteristics of care provided at the end of life for children with chronic complex conditions and neonates who died in an ICU with those who died outside an ICU. DESIGN: Substudy of a nation-wide retrospective chart revie…
Compassionate Design: Utilizing Design Thinking to Preserve Sanctity, Dignity, and Personhood When Children Die
INTRODUCTION: Greater than 70% of children who die in our institution annually die in an intensive care unit (ICU) setting. Family privacy, visitation policies, and an inability to perform religious rituals in the ICU are barriers to provide children with cult…
Compliance of palliative care standards in children with cancer in select Middle Eastern countries: a comparative study
BACKGROUND: Palliative care is one of the necessary elements in the treatment of children with cancer. Adaptation of country-specific palliative care practices to universal standards can provide valuable information for health care stakeholders. AIM: This stud…
Complications and mortality of venovenous extracorporeal membrane oxygenation in the treatment of neonatal respiratory failure: a systematic review and meta-analysis
BACKGROUND: Extracorporeal membrane oxygenation (ECMO) has been increasingly used for severe neonatal respiratory failure refractory to conventional treatments. To systematically evaluate the complications and mortality of venovenous ECMO (VV ECMO) in the trea…
Conceptualizations and definitions of pediatric palliative care by Israeli oncologists
Background/Purpose: Pediatric palliative care (PPC) is a comprehensive care approach that has physical, psychosocial, and spiritual aspects that can improve patients' and families' quality of life in the face of life-threatening illness. PPC in Israel is a you…
Conceptually Redefining Neonatal Palliative Care
BACKGROUND: First defined in 2002 by Catlin and Carter, neonatal palliative care (NPC) is a relatively new model of care in neonatal pediatrics, first appearing in the medical literature in the early 1980s. PURPOSE: The purpose of this article is to suggest a …
Concerns of Parents with Children Receiving Home-Based Pediatric Palliative Care
CONTEXT: Caring for a child who will die from a life-limiting illness is one of the most difficult experiences a parent may face. Pediatric palliative care (PPC) has grown as a specialty service to address the unique needs of children and families with serious…
Congruence Gaps between Adolescents with Cancer and Their Families Regarding Values, Goals, and Beliefs about End-of-Life Care
Importance: Lack of pediatric advance care planning has been associated with poor communication, increased hospitalization, poor quality of life, and legal actions. Clinicians presume that families understand adolescents' treatment preferences for end-of-life …