Browse Items (151 total)

Background: Despite the advances in cancer care, a subset of children with cancer will be sent for home-based palliative care. Challenges faced by the family during home-based palliative care are not studied in the Indian context. The purpose of this…

Religion and spirituality often influence how people experience illness, death, and grief. The roles of religion and spirituality for parents who have lost a child to cancer remain underexplored. This study aimed to describe how cancer-bereaved…

Objectives: Exploring data on primary caregiver experiences of dealing with chronically ill children (CIC) strengthens the ability of paediatricians to improve the quality of care by detecting unmet needs in paediatric palliative care and…

INTRODUCTION: Mortality is prioritized in critical care studies, and is invariably a component of composite outcomes. Composites, such as ventilator-free days, combine mortality with other outcomes, such as duration of mechanical ventilation (MV).…

Background: To strengthen palliative care for children in the Nordic countries, an updated status of current needs, resources, clinical services, education, and research is necessary to align and consolidate future research. A Nordic research…

Problem: Pediatric specialty services are often geographically concentrated in urban areas, leaving up to 1 in 5 rural-dwelling children in the United States without access to advanced care. The purpose of this review was to identify and review…

Purpose When a child needs a hematopoietic stem cell transplant, the seriousness of the child's illness is highlighted. The purpose of this study was to explore parents' experiences of the transplantation process when two children in the family are…

Objectives: Many children undergo surgery or an invasive procedure during their terminal hospital admission.1 The types of procedures, patients, and the intent of the procedures has not been well defined. Understanding these details may help…

Background: The Children's Palliative Outcome Scale (C-POS) is being developed using best methodological guidance on outcome measure development, This recommends cognitive testing, an established method of item improvement, prior to psychometric…

Abstract Background Healthy siblings of children with life-limiting conditions often experience emotional and behavioral struggles over the course of the ill child’s condition(s). Resources to support these siblings are limited due to the…

OBJECTIVES: Dignity therapy (DT) is well-established in adults, and it might potentially benefit the younger population. This study aims to develop a pediatric family-based dignity therapy (P-FBDT) protocol for terminally ill children and their…

Aim: The Charter of the Rights of the Dying Child was formulated as a professional guide for caring the child in the final stages. The study examines the nurses' degree of agreement with the Charter's principles and their perception of the…

Background: Children with severe neurologic impairment (SNI) regularly require major surgery to manage their underlying conditions. Anecdotal evidence suggests that children with SNI experience unexpected and persistent postoperative functional…

Background: Experiencing the illness and death of a child is a traumatic experience for the parents and the child's siblings. However, knowledge regarding effective grief interventions targeting the whole family is limited, including how to integrate…

The post-intensive care syndrome (PICS) concept whereby the ICU experience of the patient as well as their family can have long-term deleterious health outcomes in both the patient and the family provides a rationale and impetus for modifying the ICU…

Extract I. INTRODUCTION The case of Indi Gregory is the last of a series of high-profile judgments regarding the end-of-life for terminally ill children. Such cases have typically generated wide controversy among scholars, practitioners, the general…

BACKGROUND: Children and young people with life-limiting and life-threatening conditions have multidimensional needs and heterogenous cognitive and communicative abilities. There is limited evidence to support clinicians to tailor their communication…

BACKGROUND AND OBJECTIVES: Parents and family caregivers of children with severe neurologic impairment (SNI) experience many stressors, especially during their child's critical illness. This study aimed to examine parent experiences around the time…

Abstract Background Parent-reported experience measures are part of pediatric Quality of Care (QoC) assessments. However, existing measures were not developed for use across multiple healthcare settings or throughout the illness trajectory of…

Background: Collaboration between therapists and parents of children with developmental disabilities is a key element of family-centred care. In practice, collaboration appears to be challenging for both parents and therapists. This systematic review…

Aim: No studies have described long-term paediatric home respiratory support in Nordic countries. We examined the clinical characteristics and long-term outcomes of paediatric patients who received continuous positive airway pressure,…

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Background: The grief that accompanies witnessing the death of a child puts health care professionals at risk of secondary trauma, burnout, and turnover when left unaddressed. Objective: Support staff well-being and promote resiliency. Methods:…

Introduction: Advancement in medical expertise and technology has led to a growing cohort of children with medical complexity (CMC), who make up a rising proportion of childhood deaths. However, end of life in CMC is poorly understood and little is…

OBJECTIVES: To examine the circumstance of death in the PICU in the setting of ongoing curative or life-prolonging goals. DATA SOURCES: Multidisciplinary author group, international expert opinion, and use of current literature. DATA SYNTHESIS: We…

AIM: This study aimed to explain the strategies of Iranian nurses in providing palliative care to children with cancer. METHOD: This study is a qualitative research with an approach to the conventional content analysis. The main participants were…

IMPORTANCE: Early integration of pediatric palliative care (PPC) for children with cancer is critical for the quality of life of both patient and family. To improve access to PPC in resource-limited settings, barriers to early integration must be…

Key points Childhood cancer survival varies greatly between high-income (80%) versus Low and middle-income countries (LMIC) (

OBJECTIVES: The ways in which children understand dying and death remain poorly understood; most studies have been carried out with samples other than persons with an illness. The objective of this study was to understand the process by which…

Background: Nephropathic cystinosis is an autosomal recessive disease caused by a mutation in the CTNS gene which encodes cystinosin, a lysosomal cystine transporter. The spectrum of mutations in the CTNS gene is not well defined in the North African…

BACKGROUND: In 2020, the International Association for Hospice and Palliative Care redefined palliative care to incorporate the concept of serious health-related suffering. An estimated 21 million children globally live with conditions which would…

Background/aims: Palliative care for children should be provided wherever the child is who needs care, whether that be at home, at school, in a clinic, in a hospital, in a hospice, as well as including in humanitarian settings. It should be provided…

Palliative care as a system is presented in Russia for a little over 10 years. Moreover, such care in every region has its own local-specific scheme and infrastructure. This article presents the results the analysis of palliative care state and…

BACKGROUND: Childhood cancer causes significant physical and emotional stress. Patients and families benefit from palliative care (PC) to reduce symptom burden, improve quality of life, and enhance family-centered care. We evaluated palliative…

PURPOSE:The early grief experience of parents of children who died of cancer remains understudied. Understanding psychosocial symptomology and functioning of parents early in their bereavement is essential to developing supportive interventions aimed…
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