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Within paediatric palliative care, it is essential for families and providers to have open, equal, and trusting relationships. In practice, however, building relationships can be challenging. Investing in better understanding the differences in each…
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…
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…
In Europe, Portugal has been identified as the country with the most rapid evolution of paediatric palliative care provision, which is a highly complex experience for families. The present descriptive-exploratory study seeks to contribute to the…
This study aimed to explore and provide an in-depth insight into the experience and perceptions of parents to children with cancer at the end of life (EOL). A sample of 15 parents of children (aged 2-18) with cancer participated in semi-structured…
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…
Parents that accompany their children in end-of-life care until death go through a devastating, complex and vulnerable situation, which is experienced in a unique way and with individual needs, given the specificity of the palliative care setting in…
OBJECTIVES: Neonatal palliative care (NPC) is an emerging subset of care in United States (US) neonatal intensive care units (NICUs) that provides relief for both infants and families at the end of life for infants with terminal diagnoses. Families…
PURPOSE: To explore parental experiences surrounding the diagnosis of their child's non-malignant life-limiting condition. DESIGN AND METHODS: A qualitative descriptive study design using single-occasion one-to-one semi-structured interviews…
PURPOSE Adolescents and young adults (AYAs; age 15-39 years) with advanced cancer are a population in whom quality of life is uniquely affected because of their stage of life. However, training focused on palliative care for AYAs is not routinely…
OBJECTIVE: The importance of palliative care education for nurses has been recognized worldwide. The study aims to explore the experiences of nurses working with children with palliative care needs and to identify any related educational needs.…
OBJECTIVE. The purpose of this study was to investigate the immediate and long-term outcomes after fluoroscopically guided balloon dilation of esophageal strictures in a series of patients with dystrophic epidermolysis bullosa (DEB). MATERIALS AND…
Aim of the study: To assess the efficacy and safety of endoscopic balloon dilatation of esophageal strictures in children. Material and methods: Design: retrospective case series; population: 49 patients under 18 years of age referred to our center…
The experiences of end-of-life care by nurses in the pediatric intensive care unit are the subject of this systematic review. Six qualitative articles from three different countries were chosen for the review using methods from Joanna Briggs…
A personal narrative is presented which explores the author's experience as Master of Social Work (MSW) at the Division of Comfort and Palliative Care at Children's Hospital in Los Angeles, California.
INTRODUCTION: In 2013, 55,000 infants and children, aged 0 to 14, died in the United States. Nearly 7,000 of those deaths were attributed to traumatic causes. A child's death significantly affects emergency service personnel (ESP) caring for children…
