Browse Items (82 total)

Background: Children with relapsed/refractory cancer have a myriad of palliative care needs. While pediatric oncology clinicians meet many of these needs, studies suggest that these children often have distressing symptoms and that families feel…

BACKGROUND: Decision-making during the end-of-life (EOL) phase for children with cancer is extremely difficult for parents. We synthesized the qualitative experiences of children with cancer, parents, and healthcare professionals (HCPs), and their…

Understanding and respecting the spiritual beliefs, ethnic roots, cultural norms and customs of individual families is essential for neonatologists to provide clinically appropriate and humane end-of-life care. This review describes the…

With advances in biomedical sciences, a growing number of conditions affecting children have evolved from being considered life-limiting to almost chronic diseases. However, improvements in survival rates often come at a cost of increased medical…

Significant disparities continue to exist in access to inpatient pediatric hospice care among children at the end-of-life. Increasingly more children at this stage are dying in the hospital or at home on hospice which is not always an acceptable…

INTRODUCTION: Despite palliative care being offered to paediatric cancer patients, it has limited utilisation and often excludes parental support. Therefore, this review aims to consolidate evidence regarding experiences and needs of parents of…

BACKGROUND: Despite favorable prognoses, pediatric patients with hematologic malignancies experience significant challenges that may lead to diminished quality of life or family stress. They are less likely to receive subspecialty palliative care…

Aim Death in the neonatal intensive care unit (NICU) commonly follows a decision to withdraw or limit life-sustaining treatment. Advances in medicine have changed the nature of life-sustaining interventions available and the potential prognosis for…

Introduction This study explores UK Paediatric Intensive Care (PIC) trainees’ thoughts and feelings about high-profile end-of-life cases recently featured in the press and social media and the impact on their career intentions.Methods Semi-structured…

This article considers mediation as a means of resolving decision-making disputes between clinicians and parents in paediatric end-of-life cases. It examines the legal tests applied in England and Wales and notes the lack of precedent in Scotland.…

How should the medical team approach care for a very preterm infant with a significant painful and life-limiting condition when the parents wish to pursue all life-sustaining therapies? Here, we discuss a case of an infant born at 28 weeks' gestation…

In this article, I sort through some of the confusion surrounding what constitutes the controversial notion of a "good death" for children. I distinguish, first, between metaphysical and practical disagreements about the notion of a good death, and,…

BACKGROUND: Age-related complex medical conditions have been commonly reported among adolescents and young adults with advanced life-limiting illness. There is increasing interest in exploring their palliative care needs and end-of-life experiences.…

INTRODUCTION: Pediatric end of life (EOL) care skills are a high acuity, low occurrence skill set required by pediatric clinicians. Gaps in education and competence for this specialized care can lead to suboptimal patient care and clinician distress…

INTRODUCTION: Advances in perinatal medicine have contributed to significantly improved survival of newborns. While some infants die despite extensive medical treatment, a larger proportion dies following medical decision-making (MDM). International…

BACKGROUND: As Korean neonatal nurses frequently experience the deaths of infants, moral distress occurs when they provide end-of-life care to the infants and their families. Although they need to care for the patients' deaths and consequently…

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…

BACKGROUND: This study is aimed to perform the translation and cultural adaptation of the Neonatal Palliative Care Attitude Scale (NiPCAS) and evaluation of its psychometric properties with Portuguese neonatal nurses. METHOD(S): The research started…

Children’s needs in pediatric palliative care (PPC) are complex and are determined by age, the course of the disease, family structure, and cultural background [1]. The child’s family system also has multiple needs which must be properly assessed and…

Background: In pediatric hematopoietic stem cell transplantation (HSCT), the end-of-life (EOL) phase and the loss of the child is often characterized by a sudden deterioration of the child following a period of intensive curative treatment. This…

Child maltreatment and end-of-life care independently represent two of the most emotion-laden and uncomfortable aspects of pediatric patient care. Their overlap can be uniquely distressing. This review explores ethical and legal principles in such…

BACKGROUND: Children at end of life have unique and complex care needs. Although there is increasing evidence about pediatric concurrent hospice care, the health care services received while in hospice have not received sufficient attention.…

BACKGROUND: End-of-life decision-making for terminally ill neonates raises important legal and ethical issues. In Greece, no recent data on nurses' attitudes and involvement in end-of-life decisions are available. RESEARCH QUESTION/AIM: To…

Background and Objectives: Working in pediatric and neonatal intensive care units (ICUs) can be challenging and differs from work in adult ICUs. This study investigated for the first time the perceptions, experiences and challenges that healthcare…

Purpose: This study aimed to determine the feasibility and acceptability of using videography to alleviate the stress of anticipatory mourning in pediatric palliative care patients. A secondary aim was to expand palliative/end of life care research…

BACKGROUND: Children's hospices provide a range of services for babies, children and young people who have a life-limiting or life-threatening condition, including care after death in specialist 'cool bedrooms'. Care after death is a challenging but…

BACKGROUND: While several studies have examined 'what' families want with regard to the place of a child's end-of-life care and death, few have explored 'how' parents reach a decision. AIMS: (1) to develop a model explaining how parents of a child…

AIM: A follow-up conversation with bereaved parents is a relatively well-established intervention in paediatric clinical practice. Yet, the content and value of these conversations remain unclear. This review aims to provide insight into the content…

Perinatal palliative care has grown out of both an historical necessity in attending to babies in the NICU that face difficult odds of survival, the increasing technology that may avail life-extending, yet technology-dependent, care, and the growth…

CONTEXT: Decision-making in pediatric palliative care concerns mainly children without decision-making capacity. It has to balance the child's best interests, parental responsibility and the impact on the family system. OBJECTIVES: Advance care…

PURPOSE: New pediatric intensive care unit (PICU) nurses face distinct challenges in transitioning from the protected world of academia to postlicensure clinical practice; one of their greatest challenges is how to support children and their…

BACKGROUND AND PURPOSE: Illness severity among children with life-limiting illnesses is measured with the pediatric complex chronic conditions (CCC) measure. Developed in 2000/2001, it was revised in 2014 to include infant-specific categories.…

CONTEXTS: Inadequate pain management in community paediatric palliative care is common. Evidence to inform improved pain management in this population is limited. OBJECTIVES: To explore the barriers and facilitators to paediatric community-based pain…

BACKGROUND: Data on the end-of-life phase of children receiving palliative care are limited. The purpose of this study is to investigate the spectrum of symptoms of terminally ill children, adolescents, and young adults, depending on their underlying…

Background: Legacy making has been the focus of recent literature; however, few studies examine how legacy making affects bereaved parents. Objective: To better understand legacy making's effect on bereaved parents, this study examined (1) the…

Owing to differences in opinion about patient autonomy and perceived maturity, discussing diagnosis and prognosis with children can be challenging. Shifting away from “never tell” and “always tell” approaches, recent articles have championed more…

CONTEXT: Compassionate deactivation (CD) of ventricular assist device (VAD) support is a recognized option for children when the burden of therapy outweighs the benefits. OBJECTIVES: To describe the prevalence, indications, and outcomes of CD of…

Recent changes in paediatrics with the growing provision of life-sustaining interventions in both complex and rare diseases have increased the prevalence of chronic and life-limiting conditions in children. This has, in turn, led to changes in the…

Purpose: There is emerging recognition within the literature that speech-language pathologists (SLPs) have a role in the provision of paediatric palliative care (PPC). SLPs, however, experience unique challenges when working with this vulnerable…

Aim: To compare indicators of high-intensity treatment at end-of-life (HI-EOL) among children according to causes of death. Method(s): We conducted a nationwide registry study in Denmark among 938 children of 1-17 years of age who died from natural…
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