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…
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…
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…
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…
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…
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…
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…
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…
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…
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
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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 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…
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…
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…
