Browse Items · Pediatric Palliative Care Library

Beyond the healthcare system: The societal and contextual factors impacting parents' participation in decision-making for neonates with life-threatening conditions

Background Parents of neonates with life-threatening conditions and professionals, bear the burden of making complex decisions. Parents may not be fully involved in decision-making, and there is a paucity of evidence regarding the influence of social…

Navigating the Unique Challenges of Caregiving for Children with Rare Diseases: Are the Care Experiences of All Caregivers the Same? A Focus on Life-Limiting Rare Diseases

Background: Caregiving experiences in rare diseases (RDs) vary based on factors such as specific clinical entity, disease severity, the child's age, and available support and resources, leading to challenges that significantly impact caregivers'…

The impact, perceptions and needs of parents of children with epidermolysis bullosa

Background: Epidermolysis bullosa (EB) is a rare, incurable genodermatosis that presents with blistering and skin fragility. Complications can be localised or generalised, limited to the skin or have systemic effects resulting in death. Caring for a…

Reimagining Respite: An Interactive Session Aimed at Improving Pediatric Respite Care Through Idea Exchange

Outcomes: 1. Using a case-based approach, participants will self-report the ability to describe challenges faced by families of children with medical complexity in accessing respite care services that meet their needs, distinguish which of those…

Tags: 2024, Adult, care behavior, Caregiver, Caregiver Support, Child, Clinician, conference abstract, Diagnosis, Health Care System, Human, Journal of Pain and Symptom Management, June List 2024, McCarthy S, Palliative Therapy, Porter AS, rejuvenation, Respite Care, Self Report

What do parents think about the quality and safety of care provided by hospitals to children and young people with an intellectual disability? A qualitative study using thematic analysis

Objectives: Children with intellectual disability experience patient safety issues resulting in poor care experiences and health outcomes. This study sought to identify patient safety issues that pertain to children aged 0-16 years with intellectual…

Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative study

Purpose: To describe the process of delivery of pediatric palliative care from the perspective of a pediatric interdisciplinary team and the children's parents. Methods: A qualitative descriptive case study was conducted. Purposeful sampling took…

Appropriateness of end-of-life care for children with genetic and congenital conditions: a cohort study using routinely collected linked data

Abstract This study aims to evaluate the appropriateness of end-of-life care for children with genetic and congenital conditions. This is a decedent cohort study. We used 6 linked, Belgian, routinely collected, population-level databases containing…

Family attitudes toward genomic sequencing in children with cardiac disease

Purpose of study Care for children with cardiac disease often involves difficult decisions and clinical uncertainty. Genomic Sequencing (GS) promises to improve clinical prognostics and could impact how difficult decisions are made. We sought to…

Key Findings of the Structures and Processes of Inpatient Pediatric Palliative Care Programs (S737)

Objectives: * Examine the key structures and processes of inpatient pediatric palliative care programs in the United States. * Assess the degree of variation in program delivery, staffing, and patient volumes. * Identify three threats and three…

PICU and palliative care partnership to standardize family meetings and decrease ICU readmission rates

Program Goals: The American College of Critical Care Medicine Task Force, 2004-2005 recommends "family meetings with the multi-professional team begin within 24-48 hours after ICU admission and are repeated as dictated by the condition of the patient…

The Role of Child Life Specialists in Providing Culturally Responsive Palliative Care to the Mexican Origin Community

Medical assistance in dying and minors-views of the Canadian pediatrician

BACKGROUND: Medical Assistance in Dying (MAID) has been a heavily debated topic in Canada over the last decade. Since the royal assent of Bill C-14 in 2016, MAID has been available to Canadians 18 years of age or older meeting specific eligibility…

Challenges experienced by paediatricians providing palliative care to children; A thematic analysis

Background: and aim Palliative Care for Children is defined as 'an active and total approach to care, from the point of diagnosis or recognition throughout the child's life, death and beyond'. It is recognised that the prevalence of children with…

Perceptions of a Good Death in Children with Life-Shortening Conditions: An Integrative Review

Background: For children with life-shortening illness, achieving a "good death" can be a tacit goal. There is little understanding of how different stakeholders perceive what a "good death" might be. Objective(s): To review empirical literature to…

Attitudes of the four groups of population toward end-of-life care of their child: A nationwide survey

Aims & Objectives: Preference for care in dying children is important for the quality of end-of-life care but little is known about attitudes of the relatives of the children toward the preference according to the expected life span. Methods We…

Parents' needs for physician-parent communication in the face of life-threatening illness: Qualitative analysis

Introduction. Parents of a child diagnosed with a life-threatening illness often experience the state of cognitive and emotional disorganization. The key factor determining parents-physicians cooperation is the quality of their relations. That is why…

Palliative Care

Cancer is a leading cause of death in adolescents and young adults (AYAs) Wiener et al. (Pediatr Blood Cancer 60(5):715-718, 2013). Though most AYAs will survive, cancer will become incurable in 10-40 % Schrijvers and Meijnder (Cancer Treat Rev…

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Browse Items (17 total)