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…
OBJECTIVE: To review the work of one tertiary paediatric palliative care service in facilitating planned withdrawal of ventilatory support outside the intensive care setting, with the purpose of developing local guidance for practice. METHODS:…
BACKGROUND: Entering the paediatric intensive care unit with a critically ill child is a stressful experience for parents. In addition to fearing for their child's well-being, parents must navigate both a challenging environment and numerous new…
OBJECTIVE: Donation after cardiac death has been endorsed by professional organizations, including the American Academy of Pediatrics as a means of increasing the supply of transplantable organs. However, ethical concerns have been raised about…
OBJECTIVE: We conducted this study to investigate how physicians in a pediatric intensive care unit (ICU) currently make decisions to withdraw and withhold life support. Consultation with the patient's primary caregiver often precedes decisions about…
Outcome measurement in pediatric palliative care (PPC) is receiving increasing attention. The FACETS-OF-PPC, a multidimensional outcome measure for children with severe neurological impairment, has been developed and partly validated. This study…
Children with complex chronic conditions have a high need for health and social care resources. Many parents explore parallel resources such as alternative therapies, associations, psychological support, private medical consultations, and other…
Nurses play a central role in delivering palliative care, given their influence on the quality of care provided (Montgomery, Sawin, & Hendricks-Ferguson, 2016). They are professionals of choice when it comes to assessing disease symptoms or…
The purpose of this study was to assess the use of analgesic agents for invasive medical procedures in pediatric and neonatal intensive care units. The directors of 38 pediatric units and 31 neonatal units reported that analgesics were infrequently…
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…
BACKGROUND: The management of pain in children has advanced enormously in recent years. Pharmacological treatment of pain is complicated however, by the widespread use of unlicensed and off label medicines in the paediatric population, leading to…
AIM: With increasing survival rates for chronic childhood illness, there has been an increasing focus on the transition of clinical care from paediatric to adult services. Data regarding patient numbers are essential for strategic planning and for…
OBJECTIVE: To describe the consequences of the prolonged administration of sedative and analgesic agents to the pediatric intensive care unit (PICU) patient. The problems to be investigated include tolerance, physical dependency, and withdrawal. DATA…
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…
Purpose: Although the radiotherapy utilization rate (RUR) is determined for most adult cancers, it is seldom reported in childhood tumors, particularly in low- and middle-income countries (LMIC) where the majority of pediatric cancer patients reside.…
BACKGROUND: The integration of art therapy in health care is a growing trend in the care of cancer patients. Therefore, this study aimed to identify the physical and mental benefits of art in children with cancer. MATERIALS AND METHODS: A systematic…
Background: Research indicates that informal caregiving can have intense physical and mental impact on the individual. Relative to caregivers of adults, pediatric palliative caregivers appear less in literature despite experiencing greater mental,…
INTRODUCTION: Cancer remains a major cause of death in children, but recent advances in supportive care and progress in the use of chemotherapy have considerably improved the prognosis. The need for intensive care management in pediatric oncology…
The common paediatric critical care practice in France is for physicians (rather than parents) to maintain the ultimate responsibility for lifesupport decisions in children. Some French literature asserts that it is inappropriate for parents to bear…
Objectives: Define the impact of the coronavirus pandemic on pediatric palliative care team structures, communication, and workflow; and describe the roles, responsibilities, and reflections of interdisciplinary team members. Methods: Cross-sectional…
Clinicians face many challenges in caring for children with severe neurological impairment (SNI). This study aimed to understand expert clinician perspectives on the personal impact of caring for children with SNI to highlight the challenges and…
Background: Death of any of siblings is an overwhelming, severe, and prolonged challenge in children development process and is a major risk factor for psychiatric disorders in childhood and later. Interventions for bereaved families following a…
PURPOSE: In the last few decades, interest in palliative care and advance care planning has grown in Brazil and worldwide. Empirical studies are needed to reduce therapeutic obstinacy and medical futility in the end-of-life care of children with…
CONTEXT: Prospective cohort studies of individuals with serious illness and their family members, such as children receiving palliative care and their parents, pose challenges regarding data management. OBJECTIVE: To describe the design and lessons…
Palliative care, which aims to provide comprehensive, interdisciplinary, holistic care to children, adolescents and adults with life-threatening, and ultimately life-limiting conditions, is a discipline that has emerged as an integral component of…
Age is often used to determine when children can begin completing patient-reported outcome (PRO) instruments or transition to adult instruments. This study’s purpose was to determine relationships between literacy, age, and race and their influence…
Background The transition process from paediatric to adult hospice care is uniquely challenging for young adults living with non-malignant life-limiting conditions as they are often declining in health with increasing dependence on their families for…
BACKGROUND AND OBJECTIVE: Retrospective studies show that most parents prefer to share in decisions to forgo life-sustaining treatment (LST) from their children. We do not yet know how physicians and parents communicate about these decisions and to…
BACKGROUND: Systematic symptom assessment is not a standard of care in children with cancer. Many well-known symptom assessment tools are lengthy or difficult to integrate into a daily pediatric palliative care practice. We created a series of brief…
A chart review was conducted of the records of 90 children and 90 adults, randomly selected and matched for sex and diagnosis, to investigate analgesic usage. Four diagnostic categories (hernias, appendectomies, burns, and fractured femurs) at two…
The purposes of this study were to describe the experiences of pediatric intensive care unit (PICU) staff caring for a child who dies, and to determine whether responses included unprompted indications of moral distress as described in the…
There is a distinct lack of literature related to the spiritual care of parents whose children with cancer are at the end of life. This has led to a dearth in evidence about how nurses may intervene with spiritual care interventions to best support…
Children with cancer and their families experience shifts in spiritual wellness from diagnosis through treatment and survivorship or bereavement. An interdisciplinary team conducted a systematic review of quantitative and qualitative research on…
We present a baby with spinal muscular atrophy type 1, an inherited disorder causing progressive weakness, leading to complete paralysis of respiratory, facial and limb muscles. Without intervention, death occurs in infancy due to respiratory…
Purpose The purpose of this study is to gather qualitative data regarding the experiences and perceptions of speech-language pathologists (SLPs) practicing in pediatric palliative care (PPC) and investigate their approaches for working with patients,…
Children and adolescents with highly disabling chronic pain of high intensity and frequency are admitted to specialized pain rehabilitation programs. Some barriers to obtaining this specialized care include a lack of availability of treatment…
Objective In Germany, children with life-limiting conditions and complex symptoms are eligible for specialised outpatient palliative care (SOPC). In the federal state of Hesse, SOPC for children (SOPPC) is delivered by teams with paediatric…
Background: Family conferences in the pediatric intensive care unit (ICU) often include palliative care (PC) providers. We do not know how ICU communication differs when the PC team is present. Aim: To compare language used by PC team and ICU…
