September 2020 List
Title
September 2020 List
Collection Items
Gastrostomy tube insertion in children with developmental or acquired disorders: a register-based study
Aim: To describe trends in gastrostomy tube insertion in children with developmental or acquired disorders in Sweden and assess their demographic characteristics. Method(s): Children aged 0 to 18 years with gastrostomy tube insertions recorded…
The Role of Palliative Care in Caring for the Families of Patients With COVID-19
In palliative care, we strive to provide care to the whole patient. When we think about the whole patient, we include the people who are important in our patients' lives. Our New York City-based palliative care team has found that caring for…
"I Could Never Prepare for Something Like the Death of My Own Child": Parental Perspectives on Preparedness at End of Life for Children With Complex Chronic Conditions
Context: Children with complex chronic conditions (CCCs) have high morbidity and mortality. While these children often receive palliative care services, little is known about parental preparedness for their child's end of life (EOL). Objective(s):…
What do parents value regarding pediatric palliative and hospice care in the home setting?
CONTEXT: Children with life-shortening serious illnesses and medically complex care needs are often cared for by their families at home. Little, however, is known about what aspects of pediatric palliative and hospice care in the home setting…
Family meetings in paediatric palliative care: an integrative review
OBJECTIVE: Our aim was to synthesise the available evidence surrounding the structure, processes and outcomes of family meetings in the paediatric palliative care literature. METHOD(S): We undertook an integrative literature review informed by the…
A Mixed-Methods Quasi-Experimental Study on Perspectives Among Physicians and Nurses Regarding Use of Palliative Care Teams in the Pediatric Intensive Care Unit After Out-of-Hospital Cardiac Arrest
BACKGROUND: Nationally, only one-third of children survive to hospital discharge after initial presentation with out-of-hospital cardiac arrest (OHCA). Of those children who survive, less than 25% leave the hospital at their functional baseline.…
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…
Response and role of palliative care during the COVID-19 pandemic: A national telephone survey of hospices in Italy
Background: Palliative care is an important component of health care in pandemics, contributing to symptom control, psychological support, and supporting triage and complex decision making. Aim(s): To examine preparedness for, and impact of, the…
Caring for Children With Life-Limiting Illness in Bloemfontein, South Africa: Challenging the Assumptions of the 'Good Death'
Theories of good death focused on acceptance, control, and meaning-making inform adult palliative care in high-resource settings. As children's palliative and hospice care (CPHC) develops in resource-limited settings, critical conceptualisations of a…
A Time to Live and a Time to Die: Heterotopian Spatialities and Temporalities in a Pediatric Palliative Care Team
The death of a child creates especially poignant feelings and extreme stress, distress, and devastation for family members and healthcare providers. In addition, serious or long-term illness forces a reconstruction of our experiences with time and…
Rapid response in the COVID-19 pandemic: a Delphi study from the European Pediatric Dialysis Working Group
BACKGROUND: COVID-19 was declared a global health emergency. Since children are less than 1% of reported cases, there is limited information to develop evidence-based practice recommendations. The objective of this study was to rapidly gather expert…
The fragile spirituality of parents whose children died in the pediatric intensive care unit
Spiritual care is recognized as a relevant dimension of health care. In the context of pediatric palliative end-of-life care, spirituality entails more than adhering to a spiritual worldview or religion. Interviews with parents whose critically ill…
Health of mothers of children with a life-limiting condition: A protocol for comparative cohort study using the Clinical Practice Research Datalink
Introduction There are now nearly 50 000 children with a life-limiting or life-threatening condition in the UK. These include conditions where there is no reasonable hope of cure and from which they will die, as well as conditions for which curative…
Face and Content Validity, Acceptability, and Feasibility of the Adapted Version of the Children's Palliative Outcome Scale: A Qualitative Pilot Study
Objective: To assess the face and content validity, acceptability and feasibility of a French version of the Children's Palliative Outcome Scale (CPOS). Background(s): Instruments in French used to measure outcomes in pediatric palliative care are…
Investigation of Modifiable Variables to Increase Hospice Nurse Comfort With Care Provision to Children and Families in the Community: A Population-Level Study Across Tennessee, Mississippi, and Arkansas
Context: Most hospice nurses across Tennessee, Arkansas, and Mississippi report significant discomfort with provision of pediatric palliative and hospice care (PPHC). How best to target and modify variables to increase nurse comfort levels is not…
Expectations and knowledge of cannabidiol therapy for childhood epilepsy — A German caregiver survey
Background Cannabidiol (CBD) has gained popularity among parents of children with epilepsy, even before evidence of efficacy and safety was available. The aim of our survey was to gain information about parental attitude to CBD, as well as…
A Tool for the Evaluation of Clinical Needs and Eligibility to Pediatric Palliative Care: The Validation of the ACCAPED Scale
Background: Despite their importance, pediatric palliative care (PPC) services are still scantly diffused. In addition, eligibility criteria for PPC are quite complex. Consequently, clinicians require a tool that suggests how to refer patients with…
Differing needs of mothers and fathers during their child's end-of-life care: secondary analysis of the "Paediatric end-of-life care needs" (PELICAN) study
BACKGROUND: Mothers and fathers are severely challenged when providing care for their terminally ill child at end of life. Caregiving needs have been studied predominantly in mothers. Differences in caregiving needs between mothers and fathers during…
Early Initiation of Pediatric Palliative Care
Pediatric palliative care (PPC) literature was utilized to identify barriers for early initiation of palliative care at diagnosis among children with life-threatening diseases. Early integration of PPC enhances quality of life and reduces suffering…
Neonatal palliative care: perception differences between providers
Objective: The purpose of this study was to describe differences and identify education gaps in the perception of palliative care (PC) between neonatal care providers in a Level IV Neonatal intensive care unit. Study design: This is a descriptive…
Healthcare interventions improving and reducing quality of life in children at the end of life: a systematic review
Background: Children with serious illness suffer from symptoms at the end of life that often fail to be relieved. An overview is required of healthcare interventions improving and decreasing quality of life (QOL) for children with serious illness at…
Primary palliative care: Skills for all clinicians
The number of children with life-threatening and life-limiting conditions is increasing, requiring an individualized approach and additional supportive care. The American Academy of Pediatrics has called for pediatric palliative care to be available…
Pediatric Suffering and the Burden of Proof
The alleviation of suffering has always been central to the care of the sick. Yet as medical technology has advanced and life-sustaining treatments multiplied, medicine's capacity to both prevent and create suffering has grown exponentially. In…
Issues, Challenges, and Potential of Palliative Care in Pediatric Nursing: A Systematic Review
Background: Palliative care is an essential right for infants and children with a life-threatening illness. However, palliative care is still unavailable in some developing countries. This study aimed to explore the issues, challenges, and potential…
Predictors for place of death among children:A systematic review and meta-analyses of recent literature
Through a systematic review and meta-analyses, we aimed to determine predictors for place of death among children. We searched online databases for studies published between 2008 and 2019 comprising original quantitative data on predictors for place…