September 2018 List
Title
September 2018 List
Collection Items
Awareness of pediatric palliative care among health care workers
Introduction: In order to develop such a relatively new type of medical care in Ukraine, as pediatric palliative care, first of all, qualified medical workers are needed. The aim: to assess the awareness of pediatric palliative care among healthcare…
Grief and growth in bereaved siblings: Interactions between different sources of social support
The objective was to characterize the relation between different sources of school-based social support (friends, peers, and teachers) and bereaved siblings’ grief and grief-related growth and to examine whether nonparental sources of social support…
Compassionate Discharges From the PICU
OBJECTIVES: This article focuses on compassionate discharge from an ICU setting for pediatric patients. DATA SOURCES: Not Applicable. STUDY SELECTION: Not Applicable. DATA EXTRACTION: Not Applicable. DATA SYNTHESIS: The rationale for compassionate…
Withdrawal of artificial nutrition and hydration in neonatal intensive care: parents' and healthcare practitioners' views
Withdrawing Artificial Nutrition and Hydration (WANH) in the neonatal intensive care units (NICUs) has long been controversial. In France, the practice has become a legal option since 2005. But even though, the question remains as to what the…
Information needs of young people with cerebral palsy and their families during the transition to adulthood: a scoping review
The transition to adulthood is a developmental phase which occurs as young people move from adolescence into adulthood. Young people with disabilities, including cerebral palsy (CP), and their families have reported challenges during the transition…
Pharmacological Management of Symptoms in Children with Life-Limiting
Background: The provision of pediatric palliative care in Asia Pacific varies between countries and availability of essential medications for symptoms at the end of life in this region is unclear. Objective: To determine medications available and…
National Impact of the EPEC-Pediatrics Enhanced Train-the-Trainer Model for Delivering Education on Pediatric Palliative Care
Abstract Background: Lack of pediatric palliative care (PPC) training impedes successful integration of PPC principles into pediatric oncology. Objectives: We examined the impact of an enhanced implementation of the Education in Palliative and…
Prior trauma exposure and serious illness at end of life: A national study of children in the US foster care system from 2005 to 2015
Context: Children in foster care suffer with serious illness at end of life. However, the relationship between prior trauma exposure and serious illness has received little empirical attention.Objectives: The objectives were to examine the prevalence…
Medical Assistance in Dying at a paediatric hospital
This article explores the ethical challenges of providing Medical Assistance in Dying (MAID) in a paediatric setting. More specifically, we focus on the theoretical questions that came to light when we were asked to develop a policy for responding to…
When Is It in a Child's Best Interests to Withhold or Withdraw Life-sustaining Treatment? An Evolving Australian Jurisprudence
Decisions about whether to withdraw or withhold life-sustaining medical treatment from children give rise to complex and value-laden judgments. While recourse to the courts is uncommon, judicial decisions provide an important source of guidance for…
Cardiovascular disease among women who gave birth to an infant with a major congenital anomaly
Importance Having a child with a major birth defect can be a life-changing and stressful event that may be associated with higher cardiovascular disease (CVD) risk, yet the long-term burden of CVD for the child’s mother is unknown.Objective To assess…
Specialist Palliative Care Service for Children With Life-Threatening Conditions: A Nationwide Survey of Availability and Utilization
CONTEXT: According to the International Observatory on End of Life Care, the level of pediatric palliative care in Japan is Level 2 (capacity building) and the current status of palliative care for children in Japan has not been clarified.…
Pilot of a Pediatric Palliative Care Early Intervention Instrument
Current research demonstrates that pediatric symptom management care is often initiated in the late stages of disease once clinicians are no longer able to meaningfully impact symptom burden. Given that physicians or nurse practitioners are…
Comparison of mothers and grandmothers physical and mental health and functioning within 6 months after child NICU/PICU death
Losing a child is devastating for parents and grandparents. Family and friends generally focus on comforting and supporting the bereaved parents, unintentionally ignoring the bereaved grandparents. Grandmothers and grandfathers often struggle with…
Transition from children's to adult services for young adults with life-limiting conditions: A realist review of the literature
BACKGROUND: Improvements in care and treatment have led to more young adults with life-limiting conditions living beyond childhood, which means they must make the transition from children's to adult services. This has proved a challenging process for…
End-of-Life Care for Hispanic Children: A Study of California Medicaid Beneficiaries
INTRODUCTION: More than 8,000 Hispanic children die annually in the United States; yet little is known about the end-of-life care utilized. The purpose of this study was to examine the children and family characteristics associated with end-of-life…
A Systematic Review of Race/Ethnicity and Parental Treatment Decision-Making.
Patient race/ethnicity affects health care utilization, provider trust, and treatment choice. It is uncertain how these influences affect pediatric care. We performed a systematic review (PubMed, Scopus, Web of Science, PsycINFO, Cochrane, and…
Research barriers in children and young people with life-limiting conditions: a survey
Studies indicate research ethics committee (REC) approval and clinician gatekeeping are two key barriers in recruiting children and young people (CYP) with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs) and their families to…
Protocol for a scoping review about ethics in transition programmes for adolescents and young adults with neurodisabilities
Introduction As adolescents with neurodisabilities near adulthood, they and their caregivers will face the challenge of transferring from paediatric to adult healthcare systems. Despite the growing number of programmes designed to support healthcare…
The journey through care: study protocol for a longitudinal qualitative interview study to investigate the healthcare experiences and preferences of children and young people with life-limiting and life-threatening conditions and their families in the West Midlands, UK
INTRODUCTION: The number of children and young people living with life-limiting and life-threatening conditions is rising. Providing high-quality, responsive healthcare for them and for their families presents a significant challenge. Their…
Decision-making at the limit of viability: Differing perceptions and opinions between neonatal physicians and nurses
Background: In the last 20 years, the chances for intact survival for extremely preterm infants have increased in high income countries. Decisions about withholding or withdrawing intensive care remain a major challenge in infants born at the limits…
Patterns of paediatric end-of-life care: A chart review across different care settings in Switzerland
Background: Paediatric end-of-life care is challenging and requires a high level of professional expertise. It is important that healthcare teams have a thorough understanding of paediatric subspecialties and related knowledge of disease-specific…
A post-mortem population survey on foetal-infantile end-of-life decisions: a research protocol
BACKGROUND: The death of a child before or shortly after birth is frequently preceded by an end-of-life decision (ELD). Population-based studies of incidence and characteristics of ELDs in neonates and infants are rare, and those in the…
Intranasal fentanyl for respiratory distress in children and adolescents
Respiratory distress is one of the most common and frightening symptoms of children with life-limiting conditions. Because treatment of the underlying cause is frequently impossible or insufficient, in many children, symptomatic treatment is…
Always a burden? Healthcare providers' perspectives on moral distress
BACKGROUND: Current conceptualisations of moral distress largely portray a negative phenomenon that leads to burnout, reduced job satisfaction and poor patient care. OBJECTIVE: To explore clinical experiences, perspectives and perceptions of moral…
Evaluating Palliative Care Resources Available to the Public Using the Internet and Social Media
Background: Accessible information about palliative care available to the public on the Internet is growing. We do not know whether this information is consistent with the current accepted definition of palliative care. Aim: To identify resources on…
All cause mortality rates and home deaths decreased in children with life-limiting diagnoses in Denmark between 1994 and 2014
Aim Specialised paediatric palliative care has not previously been a priority in Denmark. The aim of this study was to support its development and organisation, by examining why and where children died using official national data for 1994–2014.…