November 2022 List
Title
November 2022 List
Collection Items
Clinical Practice Guidelines for Perinatal Bereavement Care: A Systematic Quality Appraisal Using AGREE II Instrument
PURPOSE: This study aimed to evaluate and analyze the methodological quality of the published clinical practice guidelines (CPGs) for perinatal bereavement care and provide a reference for implementing best clinical practices. METHOD(S): We performed…
Predicting Time to Death After Withdrawal of Life-Sustaining Treatment in Children
Accurately predicting time to death after withdrawal of life-sustaining treatment is valuable for family counseling and for identifying candidates for organ donation after cardiac death. This topic has been well studied in adults, but literature is…
Facing the Loss of Siblings in Childhood: Interactions and Dynamics between Bereaved Siblings and Their Parents
INTRODUCTION: The loss of a child in a family is a painful experience. Despite this, most studies focus on the grieving experience of parents. Our understanding of sibling bereavement therefore remains underexplored. This study aims to address this…
Use of the interRAI PEDS HC in Children Receiving Home Care in Ontario, Canada
BACKGROUND: There is no standard assessment tool for pediatric home care recipients in Canada, limiting the availability of comparable, population-based data. The objective of this study was to describe pediatric home care recipients who were part of…
Palliative Care Nurse: A Quantitative Study of Caring for Neonates at End-Of-Life Stage
Objective: This study aimed to evaluate the quality of the care provided to newborns at End-of-Life (EOL) stages and compare the care which is already being given to the infants admitted to the NICUs of the selected hospital in (XXX) with the…
Children's Hospices: An Opportunity to Put the Mouth Back in the Body
Introduction The children and young people who utilise hospice services often have additional oral health care needs and may present with additional challenges in regard to mouth care. Hospice colleagues need support and would benefit from national…
An International Study of Caregiver-Reported Burden and Quality of Life in Metachromatic Leukodystrophy
BACKGROUND: Metachromatic leukodystrophy (MLD) is an autosomal recessive lysosomal disorder caused by mutations in the arylsulfatase A gene. Until now, there has been little information on the burden of MLD on patients and their caregivers. This…
Factors Impacting Pediatric Registered Nurse Attitudes toward Caring for Dying Children and their Families: A Descriptive Study
PURPOSE: The purpose of this study was to gain knowledge of the educational preparation and attitudes of registered nurses at a southeastern pediatric hospital toward caring for dying children and their families. DESIGN AND METHODS: A descriptive…
Perceptible Signs of End of Life in Pediatric Intensive Care Patients
Background: How children die in pediatric intensive care units (PICUs) has been poorly described, and support for parents during this traumatic experience could be improved. Better information on perceptible signs of the end of life (EOL) in children…
Social Determinants of Comfort: A New Way of Conceptualizing Pediatric End-of-Life Care
The social determinants of comfort describe structural conditions that influence whether, to what degree, and in what forms comfort measures are offered to and accepted by people living with serious illness and their families. The notion of social…
Supporting the Suffering of Caregivers in Neonatal Palliative Care [French]
Supporting the suffering of caregivers in neonatal palliative care
Accompanying newborns in palliative care remains difficult for professionals. Representations, fears and real difficulties are all factors that put them to the test. Supervision in…
Accompanying newborns in palliative care remains difficult for professionals. Representations, fears and real difficulties are all factors that put them to the test. Supervision in…
Balancing Protection and Progress in Pediatric Palliative Care Research: Stakeholder Perspectives
Pediatric palliative care, including end-of-life care, remains a relatively new area of interdisciplinary clinical practice and research. Improving the multifaceted and complex care of children and their families involves research that (1) documents…
Measuring Quality of Dying, Death and End-Of-Life Care for Children and Young People: A Scoping Review of Available Tools
BACKGROUND: The circumstances and care provided at the end of a child's life have a profound impact on family members. Although assessing experiences and outcomes during this time is challenging, healthcare professionals have a responsibility to…
Reimagining a Children's Palliative Care Educational Programme for Registered Nurses in Response to the COVID-19 Pandemic
BACKGROUND: Children with life-limiting conditions are a unique population with multiple health and social care needs. Key literature indicates the need for education to support registered nurses providing care, including palliative care, to these…
Palliative Care Services for Children with Life-Limiting Conditions
Background: Palliative care (PC) for children with life-limiting conditions (LLC) is a holistic approach to achieve the best quality of life. Aim(s): Highlighting collaboration between pediatric and PC services is essential in providing seamless…
Paediatric Death after Withdrawal of Life-Sustaining Therapies: A Scoping Review Protocol
INTRODUCTION: The physiology of dying after withdrawal of life-sustaining measures (WLSM) is not well described in children. This lack of knowledge makes predicting the duration of the dying process difficult. For families, not knowing this process's…
Primary Caregivers Caring for a Child at End of Life in Saudi Arabia
BACKGROUND: Caring for children at end of life (EOL) can be devastating for primary caregivers who are responsible for the physical, social, and emotional needs of their dying child. Limited information was found on resources in Saudi Arabia to…
The Health of Mothers of Children with a Life-Limiting Condition: A Qualitative Interview Study
BACKGROUND: The number of children with a life-limiting condition is increasing. The mothers of these children commonly provide extensive care at home for their child and are at a higher risk of poor health than other mothers. The impact of this is…
Patient-Centered Perinatal Palliative Care: Family Birth Plans, Outcomes, and Resource Utilization in a Diverse Cohort
BACKGROUND: Perinatal palliative care (PPC) is an emerging concept in fetal medicine that offers quality of life options and anticipatory grief management for families of fetuses with complex conditions. Few PPC outcomes are detailed in peer-reviewed…
Relationships and Resources Supporting Children With Serious Illness and Their Parents
OBJECTIVE: Children with complex chronic conditions (CCCs) and their parents benefit from supportive serious illness care when their conditions are severe and impact their quality of life and stress. This includes not only expert medical care but…
Achieving Child-Centred Care for Children and Young People with Life-Limiting and Life-Threatening Conditions-A Qualitative Interview Study
This study aims to identify the symptoms, concerns, and care priorities of children with life-limiting conditions and their families. A semi-structured qualitative interview study was conducted, seeking perspectives from multiple stakeholders on…
Effectiveness of Time-Limited Eye Movement Desensitization Reprocessing Therapy for Parents of Children with a Rare Life-Limiting Illness: A Randomized Clinical Trial
BACKGROUND: Parents of children with a rare progressive life-limiting illness are at risk for parental posttraumatic stress disorder (PTSD). Studies on the treatment of parental PTSD with eye movement and desensitization reprocessing (EMDR) therapy…
Compassionate Healthcare for Parents of Children with Life-limiting Illnesses: A Qualitative Study
OBJECTIVES: Premature death of a child from a serious illness is probably one of the most painful experiences for a parent. This study examined the clinical experiences of bereaved parents of children with a life-limiting illness to provide…
Parent-Reported Experience Measures of Care for Children with Serious Illnesses: A Scoping Review
OBJECTIVE: This scoping review aimed to: 1) identify parent-reported experience measures (PaREMs) for parents of children with serious illnesses from peer-reviewed literature, 2) map the types of care experience being evaluated in PaREMs, 3) identify…
The Experiences of Parents of Children in Pediatric Palliative Care: A Qualitative Study
PURPOSE: This study aims to better understand the experiences of mothers of children receiving pediatric palliative care. DESIGN AND METHODS: The qualitative phenomenological method was used to determine the mothers' experiences. The study sample…
A Qualitative Study of Parental Perspectives on Prenatal Counseling at Extreme Prematurity
OBJECTIVE: To determine parental preferred language, terminology and approach after prenatal counseling for an anticipated extremely preterm delivery. STUDY DESIGN: Pregnant persons (and their partners) admitted at 22 0/7-25 6/7 weeks' estimated…
The Loss of a Child, Bereavement and the Search for Meaning: A Systematic Review of the Most Recent Parental Interventions
The loss of a child is considered one of the most tragic experiences that parents can go through. The present systematic review aims to compile the most recently published interventions in bereavement support for these parents, being particularly…
Conversations About End-of-Life Decisions in Neonatology: Do Doctors and Parents Implement Shared Decision-Making?
INTRODUCTION: Advances in perinatal medicine have contributed to significantly improved survival of newborns. While some infants die despite extensive medical treatment, a larger proportion dies following medical decision-making (MDM). International…
Parents' Decision-Making for their Foetus or Neonate with a Severe Congenital Heart Defect
BACKGROUND: Parents who receive a diagnosis of a severe, life-threatening CHD for their foetus or neonate face a complex and stressful decision between termination, palliative care, or surgery. Understanding how parents make this initial treatment…