Browse Items (23 total)

Purpose Of Review: Paediatric kidney disease results in considerable burden on children and their families. Paediatric palliative care is a holistic, family-centred care approach intended to enable flourishing and address the many impediments to life…

BACKGROUND: The aim of this study was to investigate the incidence of anxiety and depression in children and young people with life-limiting conditions. METHODS: A comparative cohort study was conducted, using primary and secondary care data from the…

Separation and loss characterise a child's experience in care, yet losses in the care-experienced population have rarely been studied as a possible source of trauma or as events that may justify a grief response. A literature search of five databases…

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…

BACKGROUND: By sharing patient stories, health care professionals (HCPs) may communicate their attitudes, values and beliefs about caring and treatment. Previous qualitative research has shown that HCPs usually associate paediatric palliative care…

Pediatric palliative care aims at improving the care and quality of life of children who are terminally ill or have a fatal prognosis. In the hospital setting, end-of-life decisions and treatments are common in intensive care units. This is why the…

Introduction: One of the most complex and emotional aspects of nursing is the interaction between the nurse and the dying child. The attitudes of nurses towards death, affect the quality of care. Objective(s): To investigate pediatric nurses'…

Background: It is essential that the physical environments in which inpatient palliative care is provided support the needs of patients and the facilitate the multidimensional delivery of palliative care. This review aims to identify the features and…

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…

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…

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…

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…

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…

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…

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…

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: 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…

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…

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…

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…

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…

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…
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