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 1976–2000 of 4332 publications
A study of paediatric patients with complex chronic conditions admitted to a paediatric department over a 12 month period
INTRODUCTION: The number of patients with complex chronic conditions (CCC) has increased in the last 20 years or so. There is limited data as regards the prevalence of CCC in the paediatric population and its impact on hospital admissions. The main objectives …
At the boundaries of life: Suffering and decision-making in children with life-threatening conditions (1-12 years)
Dying –or the possibility of death— is not a topic often addressed in modern medicine, especially in paediatrics. But when parents and children are faced with a life-threatening condition, difficult decisions may arise. How do parents and physicians navigate t…
Attitudes and Experiences Towards Death of Healthcare Professionals Working in Neonatal Intensive Care Units
BACKGROUND: Death is an integral part of neonatal intensive care units' (NICUs) environment and little it is known about NICU's staff death concepts. AIM: To investigate attitudes and experiences towards death of healthcare professionals (HPs) working in NICUs…
Attitudes and practices of pediatric oncologists regarding palliative care consultation for pediatric oncology patients
Objective: We sought to describe palliative care services available to children with cancer along with pediatric oncologists' current and ideal practices of palliative care involvement in children with cancer. Design(s): A novel survey tool was administered vi…
Availability and Quality of Grief and Bereavement Care in Pediatric Intensive Care Units Around the World, Opportunities for Improvement
Pediatric Intensive Care Units (PICUs) provide multidisciplinary care to critically ill children and their families. Grief is present throughout the trajectory of illness and can peak around the time of death or non-death losses. The objective of this study wa…
A Week in the Life: Pediatric Palliative Care through the Eyes of a Medical Student
To complete the curriculum, learners rotating through a pediatric palliative care service are asked to submit a piece of reflective writing. Here, we share an edited version of the narrative one student submitted, accompanied by a brief consideration of the nu…
Barriers and facilitators to shared decision-making in neonatal medicine: A systematic review and thematic synthesis of parental perceptions
Objectives
Systematically review parental perceptions of shared decision-making (SDM) in neonatology, identifying barriers and facilitators to implementation.
Methods
Electronic database (Medline, PsycINFO, CINAHL and Scopus) and follow-up searches were conduc…
Barriers to Optimal End-of-Life Care for Adolescents and Young Adults With Cancer: Bereaved Caregiver Perspectives
BACKGROUND: Adolescents and young adults (AYAs; aged 15-39 years) with cancer frequently receive intensive measures at the end of life (EoL), but the perspectives of AYAs and their family members on barriers to optimal EoL care are not well understood. METHOD(…
Behind the Scenes: Care Coordination Time in an Outpatient Pediatric Palliative Oncology Clinic
Background: Integrated pediatric palliative oncology (PPO) outpatient models are emerging to assist oncologists, children, and families throughout their course with cancer. Significant time is devoted to care coordination ("nonbillable"time), but the scope, ti…
Being a parent: Findings from a grounded theory of memory-making in neonatal end-of-life care
PURPOSE: Neonatal palliative care guidelines increasingly recommend that parents be encouraged to provide care for their dying baby and to spend time with the before and after death. However, little is currently known about how parents perceive such memory-mak…
Bereaved Parent Perspectives on the Benefits and Burdens of Technology Assistance among Children with Complex Chronic Conditions
Background: Many children with complex chronic conditions (CCCs) are supported by medical technologies. Objective: The aim of this study was to understand bereaved parent perspectives on technology assistance among this unique population. Design: Mixed methods…
Beyond diagnostic yield: prenatal exome sequencing results in maternal, neonatal, and familial clinical management changes
Purpose: Previous studies have reported that prenatal exome sequencing (pES) can detect monogenic diseases in fetuses with congenital anomalies with diagnostic yields ranging from 6% to 81%, but there are few reports of its clinical utility. Method(s): We cond…
Beyond technology, drips, and machines: Moral distress in PICU nurses caring for end-of-life patients
Moral distress is an experience of profound moral compromise with deeply impactful and potentially long-term consequences to the individual. Critical care areas are fraught with ethical issues, and end-of-life care has been associated with numerous incidences …
Broaching goals-of-care conversations in advancing pediatric cancer
Broaching conversations about goals of care can be difficult for clinicians. Presently, the communication strategies used by pediatric oncologists to approach goals of care conversations are not well understood. We recorded disease re-evaluation conversations …
Building a culture of engagement at a research centre for childhood disability
Engaging patients and family members as partners in research studies has become a widespread practice in healthcare. However, relatively little has been documented about what happens after the research study ends. For example, is patient and family engagement …
Buprenorphine for chronic pain in a pediatric patient with sickle-cell disease
Sickle-cell disease (SCD) is an inherited hematologic disorder characterized by the presence of sickle-shaped red blood cells (RBC). 1 Misshapen RBCs are rigid, which leads to occlusion of blood vessels resulting in tissue ischemia and pain. Pain can manifest …
Canadian surveillance study of complex regional pain syndrome in children
This study describes the minimum incidence of pediatric complex regional pain syndrome (CRPS), clinical features, and treatments recommended by pediatricians and pain clinics in Canada. Participants in the Canadian Paediatric Surveillance Program (CPSP) report…
Caregiver Reported Quality of End-of-Life Care of Adolescent and Young Adult Decedents With Cancer
BACKGROUND: The quality of palliative and end-of-life (EOL) care for adolescents and young adults (AYAs) with cancer remains largely unknown. OBJECTIVE(S): To describe caregivers of AYA cancer decedents perspectives' on EOL care quality related to EOL care com…
Care practices of specialized outpatient pediatric palliative care teams in collaboration with parents: Results of participatory observations
BACKGROUND: Collaboration between parents and professional care providers is an essential part of pediatric palliative care. As children are embedded in family systems and many of the patients are not able to communicate verbally, their parents are the primary…
Care Provider Behaviors That Shape Parent Identity as a "Good Parent" to Their Seriously Ill Child
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Abstract
Background: Parents of medically complex children hold deeply personal definitions of how to be "good parents" that guide their medical decision making and interactions with providers and are impacted by provider behaviors. Objecti…
Caring for a child with a life limiting condition: The experiences of nurses in an intellectual disability service provider
This study elicited the experiences of nurses caring for children with life-limiting conditions and their family, within a community based intellectual disability service. A qualitative descriptive research approach was adopted where purposeful sampling recrui…
Caring for Critically Ill Children With Suspected or Proven Coronavirus Disease 2019 Infection: Recommendations by the Scientific Sections' Collaborative of the European Society of Pediatric and Neonatal Intensive Care
OBJECTIVES: In children, coronavirus disease 2019 is usually mild but can develop severe hypoxemic failure or a severe multisystem inflammatory syndrome, the latter considered to be a postinfectious syndrome, with cardiac involvement alone or together with a t…
Challenges in preloss care to parents facing their child's end-of-life: A qualitative study from the clinicians perspective
INTRODUCTION: Bereavement care for parents predominantly focuses on care after child loss. However, Health Care Professionals (HCPs) feel responsible for supporting parents who are grieving losses in their child's end-of-life. Preloss care is tailored to the p…
Challenges in preloss care to parents facing their child's end-of-life: A qualitative study from the health care professionals' perspective
Background: Bereavement care is an inherent aspect of paediatric palliative care, mainly focused on parental bereavement after child loss. However, Health Care Professionals (HCPs) feel responsible for supporting parents who are grieving losses in their child'…
Challenges in the Provision of Pediatric Palliative Care in Mexico: A Cross-Sectional Web-Based Survey
Objective: An enormous need for pediatric palliative care (PPC) has been reported, especially in low- and middle-income countries (LMICs). However, the access to PPC is limited. This study identifies the current challenges in the provision of PPC and their sev…