December 2021 List
Title
December 2021 List
Collection Items
Community Hospice Nurses' Perspectives on Needs, Preferences, and Challenges Related to Caring for Children With Serious Illness
Importance: Many of the 50 000 children who die annually are eligible for provision of community-based hospice care, yet few hospice organizations offer formal pediatric services. Population-level data demonstrate that hospice nurses lack training,…
The role of family adaptation in the transition to adulthood for youth with medical complexity: a qualitative case study protocol
Background For youth with medical complexity and their families, the transition to adulthood is a stressful and disruptive period that is further complicated by the transfer from relatively integrated and familiar pediatric services to more…
Improving the regulation of medical cannabis in Canada to better serve pediatric patients
Key points Children with chronic debilitating illness and pain are increasingly using cannabis for medical purposes, particularly when conventional treatment options have limited benefit or substantial adverse effects. Caregivers are becoming aware…
Perspectives of pediatric oncologists and palliative care physicians on the therapeutic use of cannabis in children with cancer
Background Children with cancer are increasingly using cannabis therapeutically. Aim The purpose of this study was to determine the perspectives and practices of pediatric oncologists and palliative care physicians regarding the use of cannabis for…
Pediatric palliative care at home by Home Care Unit: how home nurses feel?
PURPOSE: Our Home Care Unit (HCU) undertakes close to twenty pediatric palliative care engagements per year. We investigated the factors underlying such care by independent home health nurses. METHODS: This was a retrospective, observational,…
Participatory Design of an Electronic Cross-Facility Health Record (ECHR) System for Pediatric Palliative Care: A Think-Aloud Study
BACKGROUND: Pediatric palliative care (PPC) patients experience years of multisectoral and professional care. An electronic cross-facility health record (ECHR) system can support the immediate exchange of information among PPC professionals. Based on…
Creating a safe space': how perinatal palliative care coordinators navigate care and support for families
BACKGROUND: Families who learn that their unborn baby has a life-limiting fetal condition are often overwhelmed by this news, alongside navigating an unfamiliar healthcare system. A skilled perinatal palliative care coordinator (PPCC) can help these…
The role of perinatal palliative care following prenatal diagnosis of major, incurable fetal anomalies: a multicentre prospective cohort study
OBJECTIVE: To describe prenatal decision-making processes and birth plans in pregnancies amenable to planning perinatal palliative care. DESIGN: Multicentre prospective observational study. SETTING: Nine Multidisciplinary Centres for Prenatal…
Primary palliative care integrated model in paediatric ICU: an international cross-sectional study
OBJECTIVES: Numbers are rising of chronically and critically ill, technology-dependent children, who are admitted to paediatric intensive care units (PICUs). An integrated model of care (IMOC), that combines paediatric critical care and primary…
Utilizing high-fidelity simulation to improve newly licensed pediatric intensive care unit nurses' experiences with end-of-life care
PURPOSE: New pediatric intensive care unit (PICU) nurses face distinct challenges in transitioning from the protected world of academia to postlicensure clinical practice; one of their greatest challenges is how to support children and their…
Changing Pediatric Hospice and Palliative Care Through Medicaid Partnerships
Since its inception in 2010, the Concurrent Care for Children Provision of the Affordable Care Act has enabled seriously ill pediatric patients and their families to access comprehensive, supportive hospice services while simultaneously receiving…
Participatory development of a modular advance care planning program in pediatric palliative care (MAPPS)
CONTEXT: Decision-making in pediatric palliative care concerns mainly children without decision-making capacity. It has to balance the child's best interests, parental responsibility and the impact on the family system. OBJECTIVES: Advance care…
Factors associated with quality of life in children receiving pediatric palliative care
CONTEXT: Since pediatric palliative care (PPC) aims to improve the health-related quality of life (HRQoL) of children with life-limiting conditions (LLC), assessment of their HRQoL and identification of its determinants is crucial. OBJECTIVES: To…
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…
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)…
True Resilience: A Look Inside COVID's Effect on Children with Medical Complexity and Their Families
PURPOSE OF REVIEW: Vulnerable children with medical complexity are silent victims of the COVID-19 pandemic, impacted by lack of resources and sick caregivers. In this article, we examine ways in which the pandemic has increased the significant…
Children's palliative care education and training: developing an education standard framework and audit
BACKGROUND: The need to align the range of guidance and competencies concerning children's palliative care and develop an education framework have been recommended by a UK All-Party Parliament Group and others. In response to these recommendations…
Point-of-Care Complexity Screening Algorithm to Identify Children With Medical Complexity
OBJECTIVES: For pediatric complex care programs to target enhanced care coordination services to the highest-risk patients, it is critical to accurately identify children with medical complexity (CMC); however, no gold standard definition exists. The…
Validation of the FACETS-OF-PPC as an Outcome Measure for Children with Severe Neurological Impairment and Their Families-A Multicenter Prospective Longitudinal Study
Outcome measurement in pediatric palliative care (PPC) is receiving increasing attention. The FACETS-OF-PPC, a multidimensional outcome measure for children with severe neurological impairment, has been developed and partly validated. This study…
Face-Validated Quality Indicators for Appropriateness Of End-Of-Life Care in Children With Serious Illness: A Study Using the RAND/UCLA Appropriateness Method
OBJECTIVE: To develop and face-validate population-level indicators for potential appropriateness of end-of-life care, for children with cancer, neurological conditions, and genetic/congenital conditions, to be applied to administrative health data…
Pediatric Palliative Care Pharmacy Pearls-A Focus on Pain and Sedation
Determining the optimal dosing regimen for pediatric patients is a challenge due to the lack of dosing guidelines and studies. In addition, many developmental pharmacology changes that occur throughout childhood that have profound impacts on the…
The Role of Perinatal Palliative Care in Fetal Neurology
Many serious or life-threatening neurologic conditions are first diagnosed during the fetal period, often following a routine prenatal ultrasound or sonographic evaluation after an abnormal aneuploidy screen. Such conditions represent a worrisome or…
Neuropalliative Care for Neonates
Many childhood neurologic conditions are first diagnosed in the perinatal period and shorten or seriously alter the lives of affected infants. Neonatal neuropalliative care incorporates core practices and teachings of both neurology and palliative…
Palliative care is not associated with decreased intensity of care: Results of a chart review from a large children's hospital
BACKGROUND: Palliative care is an important component of pediatric oncology care, especially for children who will not be cured of their disease. However, barriers remain to integration of this service. One barrier is the perception that it indicates…
Ongoing Value and Practice Improvement Outcomes from Pediatric Palliative Care Education: The Quality of Care Collaborative Australia
PURPOSE: Novice and experienced professionals who care for children with life limiting conditions throughout Australia were provided with pediatric palliative care (PPC) education through the Quality of Care Collaborative Australia (QuoCCA). Impact…
Perinatal Palliative Care Service: Developing a Comprehensive Care Package for Vulnerable Babies with Life Limiting Fetal Conditions
Background: Perinatal Palliative Care provides comprehensive and holistic care for expectant and new parents, who receive a diagnosis of life-limiting fetal condition and opt to continue pregnancy and care for their newborn infant. Aim: To develop a…