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 2051–2075 of 4332 publications
Disparities in intensity of treatment at end-of-life among children according to the underlying cause of death
Aim: To compare indicators of high-intensity treatment at end-of-life (HI-EOL) among children according to causes of death. Method(s): We conducted a nationwide registry study in Denmark among 938 children of 1-17 years of age who died from natural causes from…
Dying child and nurses' mourning
Introduction: One of the most complex and emotional aspects of nursing is the interaction between the nurse and the dying child. The attitudes of nurses towards death, affect the quality of care. Objective(s): To investigate pediatric nurses' attitudes towards…
Early palliative care is associated with less intense care in children dying with cancer in Alabama: A retrospective, single-site study
BACKGROUND: Regional studies show that children with cancer receive medically intense end-of-life (EOL) care, but EOL care patterns, including palliative care utilization in Alabama, remain unknown. METHODS: This was a retrospective study of 233 children (0-19…
Educational Priorities for Providing End-of-Life Care: Parent Perspectives
OBJECTIVES: Partnership with parents is a tenet of pediatric medicine; however, initiatives to include parents in education and research have been limited. Through focus groups, we included parents at the beginning of curriculum development by asking them to i…
Education in Palliative and End-of-Life Care-Pediatrics: Curriculum use and dissemination
CONTEXT: The majority of seriously ill children do not have access to specialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. The Education in Palliative and End-of-Life Care (EPEC)-Pediatrics curriculum and dissemination …
Effectiveness of a Family-Caregiver Training Program in Home-Based Pediatric Palliative Care
Background: Pediatric palliative cares involve the whole family, along with the interdisciplinary pediatric palliative care (PPC) team. The commitment of the PPC team and the engagement of the family at different levels can play a key role in advancing a bette…
Effectiveness of Pediatric Concurrent Hospice Care to Improve Continuity of Care
BackgroundThe 2010 Patient Protection and Affordable Care Act (ACA) mandated landmark hospice care legislation for children at end of life. Little is known about the impact of pediatric concurrent hospice care.ObjectiveThe purpose of this study was to examine …
Effectiveness of virtual reality interventions for adolescent patients in hospital settings: Systematic review
Background: Given the high level of interest and increasing familiarity with virtual reality among adolescents, there is great potential to use virtual reality to address adolescents' unique health care delivery needs while in hospital. While there have been r…
Electronic Health Records in Specialized Pediatric Palliative Care: A Qualitative Needs Assessment among Professionals Experienced and Inexperienced in Electronic Documentation
BACKGROUND: Currently, to the best of our knowledge, no findings exist concerning the needs of professionals in specialized pediatric palliative care (PPC) regarding electronic health records (EHRs). Several studies have highlighted benefits concerning the use…
End-of-Life Childhood Cancer Research: A Systematic Review
CONTEXT: Children with incurable cancer may participate in research studies at the end of life (EOL). These studies create knowledge that can improve the care of future patients.
OBJECTIVE: To describe stakeholder perspectives regarding research studies involv…
End of life communication among caregivers of children with cancer: A qualitative approach to understanding support desired by families
OBJECTIVES: Clinicians and parents are encouraged to have open and honest communication about end of life with children with cancer, yet there remains limited research in this area. We examined family communication and preferred forms of support among bereaved…
End-of-Life Healthcare Service Needs Among Children With Neurological Conditions: A Latent Class Analysis
BACKGROUND: At the end of life, children with neurological conditions have complex healthcare needs that can be met by providing care of their life-limiting conditions concurrently with hospice care (ie, concurrent care). Given the limited literature on concur…
End-of-life issues in the paediatric intensive care unit
Recent changes in paediatrics with the growing provision of life-sustaining interventions in both complex and rare diseases have increased the prevalence of chronic and life-limiting conditions in children. This has, in turn, led to changes in the population o…
End of Life Outside of "Business Hours": A Retrospective Review Evaluating Time of Death and Provider Time at End of Life
Introduction: Pediatric palliative care (PPC) benefits patients and families, while potentially creating emotional and resource-management burdens for providers. This study's purpose was to characterize the occurrence of deaths attended by PPC providers outsid…
End-of-life practices in patients admitted to pediatric intensive care units in Brazil: A retrospective study
OBJECTIVE: To determine the prevalence of life support limitation (LSL) in patients who died after at least 24h of a pediatric intensive care unit (PICU) stay, parent participation and to describe how this type of care is delivered. METHODS: Retrospective coho…
Enhancing paediatric palliative care: A rapid review to inform continued development of care for children with life-limiting conditions
AIM: Following the establishment of paediatric palliative care services over recent decades, this study sought to identify information to inform future policy and practice. METHODS: A rapid review using thematic synthesis was conducted to synthesise existing i…
Ethical challenges for a new generation of early-phase pediatric gene therapy trials
After decades of setbacks, gene therapy (GT) is experiencing major breakthroughs. Five GTs have received US regulatory approval since 2017, and over 900 others are currently in development. Many of these GTs target rare pediatric diseases that are severely lif…
Evaluating Palliative Opportunities Across the Age Spectrum in Children and Adolescent Patients with Cancer
Purpose: Adolescent patients with cancer experience unique stressors due to their developmental stage, with increased physical, emotional, and social distress. Palliative care (PC) serves an important role in pediatric cancer care. We examined "palliative oppo…
Evaluating palliative opportunities in pediatric patients with leukemia and lymphoma
BACKGROUND: Despite favorable prognoses, pediatric patients with hematologic malignancies experience significant challenges that may lead to diminished quality of life or family stress. They are less likely to receive subspecialty palliative care (PC) consulta…
Evaluating the Need for Integrated Pediatric Palliative Care Services in a Pediatric Oncology Setting: A Retrospective Audit
OBJECTIVES: Early integrated palliative care has shown to improve the quality of life in patients with cancer. During the past decade, pediatric palliative care has become an established area of medical expertise, however due to scant information available reg…
Evaluation of a grandparent bereavement support group in a Pediatric Palliative Care Hospice
This study aimed to explore grandparents' experiences of grief after the death of a grandchild, their perception of socially supportive behavior as well as their satisfaction with a bereavement support care. A six-session bereavement support group was implemen…
Evaluation of a Quality Improvement Intervention to Improve Pediatric Palliative Care Consultation Processes
BACKGROUND: A critical aspect of pediatric palliative care consultations is the assessment and documentation of patient and family needs. While these assessments usually include a focus on physical pain, there is less standardization of assessments of other ph…
Evaluation of Care Providers' Attitude toward Perinatal Palliative Care and its Challenges in the Selected Teaching Hospitals of Tehran in 2019
OBJECTIVES: The present study aims to determine the attitudes of care providers including obstetricians, paediatricians and midwives working in perinatal, obstetric and neonatal intensive care unit (NICU) wards of the selected teaching hospitals in Tehran in 2…
Experiences from the first 10 years of a perinatal palliative care program: A retrospective chart review
Background Perinatal palliative care is a relatively new component of paediatric palliative care which supports families who are expecting the birth of a child with a life-limiting condition. This study seeks to understand the characteristics of the infants an…
Experiences of fathers of children with a life-limiting condition: a systematic review and qualitative synthesis
BACKGROUND: Children with a life-limiting condition often require extensive and complex care, much of which is provided by their parents at home. There is a growing body of research that aims to understand the experiences of these parents, but the majority of …