Sedation in pediatric palliative care: The role of pediatric palliative care teams.

Objectives: Palliative sedation (PS) consists of the use of drugs to alleviate the suffering of patients with refractory symptoms, through a reduction in consciousness. The aim of this study is to describe the incidence of and indications for PS in patients treated by pediatric palliative care teams (PPCT), and the relationship between PS, the place of death, and the characteristics of the care teams.

Methods: Ambispective study with the participation of 14 PPCT working in Spain.

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 place within a specialized pediatric palliative care Unit in Madrid (Spain), located at the Niño Jesus Hospital.

Pediatric Palliative Care at Home: A Prospective Study on Subcutaneous Drug Administration.

Context: The subcutaneous route is a useful alternative for drug administration in palliative care. Although there is scientific evidence on its use in adult patients, the literature in pediatric palliative care is almost nonexistent.

Objectives: To describe the experience of a pediatric palliative care unit (PPCU) with in-home subcutaneous drug administration symptom control.

The Emotional Experience of Caring for Children in Pediatric Palliative Care: A Qualitative Study among a Home-Based Interdisciplinary Care Team.

The healthcare providers caring for children with life-threatening illnesses experience considerable compassion fatigue. The purpose of this study was to describe the feelings and emotions of professionals working in an interdisciplinary pediatric palliative home care team. A qualitative case study was conducted, comprising 18 participants.

End of life in patients attended by pediatric palliative care teams: what factors influence the place of death and compliance with family preferences?

Each year, more than 8 million children worldwide require specialized palliative care, yet there is little evidence available in pediatrics on the characteristics of the end of life in this context. Our aim is to analyze the characteristics of patients who die in the care of specific pediatric palliative care teams. This is ambispective, analytical observational, multicenter study conducted between 1 January and 31 December 2019.

Update on the palliative care approach at the pediatric intensive care unit.

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 integration of palliative care in these units is a logical evolution of the clinical approach to severely ill children.

Palliative care in pediatric patients with central nervous system cancer: Descriptive and comparative study.

Objectives: Data regarding the palliative needs of pediatric patients with central nervous system (CNS) cancer are scarce. We aimed to describe the attention provided by a pediatric palliative care (PPC) team to patients with CNS cancer and the differences in care compared to patients who did not receive PPC.

Method: This retrospective study was based on the clinical records of deceased patients with CNS cancer attended by a PPC team over 10 years, analyzing their trajectory and provision of PPC, including medical, psychological, social, and nursing interventions.

End of life in patients under the care of paediatric palliative care teams. Multicentre observational study.

Introduction: Around 2000 children and adolescents die each year in Spain, however, we know little about the particularities of deaths in paediatrics. The purpose of this study is to document the characteristics of patients who die in the care of paediatric palliative care teams in Spain.

Patients And Methods: Retrospective, descriptive, multicentre study.

Descriptive analysis of palliative sedation in a pediatric palliative care unit.

Introduction: Data surrounding palliative sedation in pediatric patients is scarce. Our objective is to assess the utility of creating a quality standard for pediatric palliative sedation.

Material And Methods: A non-systematic review of the literature was used to find recommendations for pediatric palliative sedation, after which a definition was established based on three items: (1) indication, (2) consent, and (3) application.

[End of life in patients under the care of paediatric palliative care teams. Multicentre observational study].

Introduction: Around 2000 children and adolescents die each year in Spain, however, we know little about the particularities of deaths in paediatrics. The purpose of this study is to document the characteristics of patients who die in the care of paediatric palliative care teams in Spain.

Patients And Methods: Retrospective, descriptive, multicentre study.

Effectiveness of a Family-Caregiver Training Program in Home-Based Pediatric Palliative Care.

Pediatric palliative cares involve the whole family, along with the interdisciplinary pediatric palliative care (PPC) team. The commitment of the PPC team and the engagement of the family at different levels can play a key role in advancing a better quality of life in children and families. A descriptive pre-post educational intervention study was carried out.

[Descriptive analysis of palliative sedation in a pediatric palliative care unit].

Introduction: Data surrounding palliative sedation in pediatric patients is scarce. Our objective is to assess the utility of creating a quality standard for pediatric palliative sedation.

Material And Methods: A non-systematic review of the literature was used to find recommendations for pediatric palliative sedation, after which a definition was established based on three items: (1) indication, (2) consent, and (3) application.

Off-Label and Unlicensed Drugs in Pediatric Palliative Care: A Prospective Observational Study.

Context: Off-label and unlicensed use of drugs is a widespread practice in pediatric care because of the lack of specific efficacy and safety data and the absence of formulations adapted to the needs of these individuals. Pediatric patients with a life-limiting illness frequently receive drugs under these conditions, although no studies have established the prevalence of this practice.

Objectives: To describe the prevalence, indications, and most common uses of off-label and unlicensed drugs in a pediatric palliative care unit (PPCU).

The impact of home-based physical rehabilitation program on parents' experience with children in palliative care: a qualitative study.

Background: Pediatric palliative care programs aim to improve the quality of life of children with severe life-threatening illnesses, and that of their families. Although rehabilitation and physical therapy provides a valuable tool for the control of symptoms, it has been poorly researched to date. Since the family represents such a fundamental support in these cases, it is important to deepen our understanding regarding the value of implementing rehabilitation programs from the parents' perspective.

[Retrospective study of children referred from paediatric intensive care to palliative care: Why and for what].

Introduction: The creation of paediatric palliative care units (PPCU) could optimise the management of children with palliative focus after admission to a paediatric intensive care unit (PICU). This study describes the clinical and epidemiological characteristics of children referred from PICU to the PPCU of the Autonomous Community of Madrid (CAM). The overall treatment, relapses, re-admissions, and deaths, if occurred, are described.

Palliative care in children with spinal muscular atrophy type I: What do they need?

Objective: Our aim was to describe the clinical evolution and needs of children with spinal muscular atrophy type I treated in a domiciliary palliative care program.

Method: We undertook a retrospective chart review of nine consecutive patients. Descriptions of the clinical and demographic profile of children with spinal muscular atrophy (SMA) type I were referred to a pediatric palliative care team (PPCT).

[Withdrawal of assisted ventilation in the home: making decisions in paediatric palliative care].

End-of-life care is of growing interest in Paediatrics. The number of children with diseases being treated using high-technology as palliative treatment has also increased. The creation of multidisciplinary care teams with 24/7 hours home care may prevent prolonged hospital stays in these patients.