Browse Items (74 total)

Background: Actigraphy offers a promising way to objectively assess pediatric sleep. Aim of the study was investigating the extent to which actigraphy used in children and adolescents with life-limiting conditions is consistent with two other…

BACKGROUND: The establishment of paediatric hospices improves the quality of care of paediatric nurses. AIM: To examine the effect of establishing paediatric hospices on the quality of care of paediatric nurses. METHOD(S): Data was collected between…

Background: Last Aid Courses (LAC) for adults have been established in 21 countries in Europe, Australia and America to improve the public discussion about death and dying and to empower people to participate in end-of-life care provision. In 2018,…

Background: Paediatric Palliative Care (PPC) has undergone rapid growth in Portugal, where there are over 7800 children with life-limiting conditions. This is a complex experience for families due to the ongoing threat and vulnerability caused by the…

Introduction: The health care offered to children and adolescents with cancer has been expanded, giving space to orthothanasia and palliative care, with a comprehensive look at the subject facing the threat to the continuity of life, as well as…

Simulated learning has well known positive effects but its use in palliative care education is limited. A quality improvement project was undertaken at a children's hospice to develop and evaluate simulation workshops. The aim was to increase the…

Health care providers caring for patients at the end of life (EOL) are faced with a multitude of emotions such as guilt, anger, sadness, and helplessness. Because of the negative impact of initiating EOL care (EOLC) to the pediatric population,…

Introduction Nocturnal enuresis is a common yet quality-of-life-limiting paediatric condition. There is an increasing trend for parents to obtain information on the disease's nature and treatment options via the internet. However, the quality of…

Objectives Questionnaire evaluation of a newly developed Enhanced Symptom Management clinic held at the local children's hospice to support children and young people (CYP) with life limiting (LLC) and life threatening conditions (LTC). Methods A…

Objectives To see if a network Palliative Care Study day increases knowledge of participants. Method This was the first paediatric palliative care network study day run in the region. 20 doctors (both consultants and those in training) participated.…

OBJECTIVES: Chronically ill adolescent and young adult (AYA) patients experience barriers to accessing psychosocial care. AYAs who receive palliative and psychosocial care experience numerous benefits from these services. However, we still lack…

Abstract Context: Bereavement is an individuated, nuanced experience, and its expression is different for each parent who has cared for a dying child. Evidence highlights support is valuable to navigate this loss. Objectives: To evaluate a…

Background: Neonatal palliative care (NPC) aims to prevent and relieve the suffering of neonates who are not going to recover. Although an integral part of neonatal care, it remains in nascent stages in many parts of the world. Aim(s): To describe…

Abstract
The integration of pediatric palliative care (PPC) should become a standard of care for all children with life-limiting and life-threatening illnesses. There are many barriers and misperceptions in pediatrics which hinder the early…

Background More young adults with life-limiting conditions are surviving into adulthood needing adult palliative care (Gibson- Smith, Jarvis, Norman et al., 2021). The evidence on appropriate service models is sparse (Clark & Fasciano, 2015. Am J…

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/aims: The death of a child or young adult is fundamentally painful. Evaluating end-of-life care experiences can identify specific needs and ensure good quality care is provided. Our aim was to identify tools assessing quality of dying,…

Purpose: Compassion fatigue (CF) is emotional distress experienced by providers from ongoing contact with patients' suffering. Burnout (BO) is personal distress due to uncontrollable workplace factors that manifest in career dissatisfaction. CF and…

Aim: Evaluation of pediatric palliative home care of families with children suffering from neurodegeneration with brain iron accumulation (NBIA) and their parents. Material and methods: The children were treated at home by a multidisciplinary team.…

Objectives: * Recognize how PICUs/NICUs implement GBS IPPC recommendations. * Describe how PICUs/NICUs' resource influence their GBS care provision as related to IPPC recommendations. Original Research Background: Grief and bereavement support (GBS)…

Objectives: * Explain a novel method for creating pediatric palliative care resources using telehealth technology. * Describe preliminary data demonstrating project feasibility and satisfaction.

Background: Legacy-making (i.e., a way for patients with terminal illness to create or do something for others as a means of remembrance) is rising in popularity in palliative medicine, although only one study has examined its impact in a pediatric…

Objectives: Palliative radiation therapy (pRT) is often used to improve quality of life for pediatric patients. Though palliative doses are generally lower than those for cure, pRT may still introduce undesirable effects. The decision to pursue…

Background: It is difficult to perceive the preparation of a good death for children because of its social and cultural issues. Among the children with serious diseases, they can be alienated and the whole processes are done by the decision of the…

OBJECTIVE: To describe the current status of withholding or withdrawal of life-sustaining interventions (LSI) for neonates in Japan and to identify physician- and institutional-related factors that may affect advance care planning (ACP) practices…

BACKGROUND: Cystic fibrosis (CF) continues to be the most common life-limiting chronic pulmonary disease in adolescents and young adults. Treatment of CF demands a high treatment time investment to slow the progression of lung function decline, the…

Background: Moral distress and burnout related to end-of-life decisions in neonates is common in neonatologists and nurses working in neonatal intensive care units. Attention to their emotional burden and psychological support in research is lacking.…

Characteristics of sleep and sleep problems were investigated in 43 individuals with 11q terminal deletion disorder (Jacobsen syndrome). Data were collected using a sleep questionnaire. Ten individuals (23%) had a sleep problem. Settling problems,…

Background: Despite advances in medical technology, resources for pediatric palliative care (PPC) for children with serious illnesses are limited in South Korea. Physicians' awareness of and willingness to provide general palliative care and refer to…

The number of children in the UK with life-limiting conditions and the demand for home-based palliative care is increasing. Children's hospices remain a dominant provider of palliative care. This study aimed to determine the approaches taken by…

Introduction: The care at the end of children's lives must be sensitive to the needs of the child and their family. An understanding of the illness is required from the perspective of parents faced with the death of their child, in order to improve…
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