Background: "Primary" palliative care (PC) skills for CF care teams are not clearly defined, but in general for serious illness include managing basic physical and emotional symptoms, and having basic discussions about prognosis, goals, suffering,…
BACKGROUND:
Perinatal palliative care (PPC) programs are proliferating nationwide, but little is known about their structure, process, or desired outcomes, to inform future program development.
OBJECTIVE:
To explicate structure, processes, and…
The children's palliative care sector requires a specific set of knowledge and skills in its workforce. Maintaining high levels of competence and leadership can be challenging if staff move out of the sector, retire or several key people leave.…
Background: Perinatal Hospice is a relatively new component of pediatric palliative care, which supports families who are expecting the birth of a child with life-threatening or life-limiting condition. Parents in this situation have unique needs and…
CONTEXT: Pediatric palliative care has no evidence-based needs assessment measure. The Parent and Child Needs Survey (PCNeeds) is a new instrument designed to assess the needs of children in palliative care, including children receiving end-of-life…
Introduction Of the 74% of UK childhood deaths that occur in hospital, an increasing number-up to 65%-occur in PICU. There is little information about the impact of this on those who provide minute-to minute care of the children and their families,…
BACKGROUND: Limited knowledge exists of parents' perceptions and experiences of children's hospices and how these contribute to the varied access and uptake of services. AIM: This study aimed to explore parents' perspectives and experiences of a…
Little literature examines the cognitive journey taken by parents considering/receiving hospice care for their child. A constructivist grounded theory study explored 38 parents' views of considering/using a children's hospice. Data analysed from…
Background: Pediatric patients with cancer have many opportunities for increased primary or specialty palliative care (PC). This is particularly true for patients with solid tumors who often have higher symptom burden and worse outcomes. However, how…
Background: Palliative care (PC) has been shown to improve quality of life, symptom burden, and mood in patients with advanced solid tumors as well as those with hematologic malignancies undergoing hematopoietic stem cell transplantation (HSCT).…
Many ethical issues arise concerning the care of critically ill and dying patients during the coronavirus disease 2019 (COVID-19) pandemic. In this issue's Ethics Rounds, we present 2 cases that highlight 2 different sorts of ethical issues. One is…
Background The hospice recognised a gap in services for patients, relatives and carers aged 18-30 and that services should be more age appropriate (Smith, Mooney, Cable, & Taylor (eds.). Teenage Cancer Trust, 2016). In addition, young people are…
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…
Little is known about the prevalence, characterization and treatment of pain in children with progressive neurologic, metabolic or chromosomal conditions with impairment of the central nervous system. The primary aims of this study were to explore…
Background: The Centre for Pediatric Palliative Care at the Medical Center of the University of Munich is one of the largest in Germany. Care is provided yearly to 90-100 children with advanced lifelimiting diseases living at home (at a distance of…
OBJECTIVE: To present our center's experience with terminal extubation in 3 palliative critical care home transports from the Pediatric Cardiac Intensive Unit. DESIGN: All cases were identified from our Cardiovascular intensive care unit ( CVICU).…
Music enables us not only to reflect upon the world in which we live but also to become active agents in creating and shaping it and ourselves. The Treehouse Choir is an innovative, therapeutic programme open to all adult service users and staff at…
Background: Children and adolescents with serious conditions may benefit from simultaneous hospice and palliative care. Although the Affordable Care Act covers concurrent care, uptake has been limited. Limited descriptive data exist on receiving…
Purpose:To describe the suggested clinical practice of palliative sedation as it is presented in the literature and discuss available guidelines for its use. METHODS: CINAHL, PubMed, and Web of Science were searched for publications since 1997 for…
Research conducted using the Haley Transcultural Strengths Assessment Interview Guide used in several studies has identified 11 sources of strength routinely utilized by parents caring for their child with intensive needs and child in…
Background: Growing evidence suggests that pediatric palliative care (PPC) teams influence the care received by children and young adults with chronic, life-limiting illnesses. Little is known about how PPC involvement affects advance care planning…
OBJECTIVE:
Improving quality of life (QOL) is the central focus of palliative care support for children with life-limiting illness (LLI), but achieving this can be challenging.
INTERVENTION:
MyQuality is an online tool that enables families to choose…
Aims There is a statutory requirement to review all child deaths in England. The aim of this study is to collate and evaluate child death data from all Child Death Overview Panels (CDOPs) within a single UK region to inform strategic planning.…
Background: Palliative care (PC) for children with life-limiting conditions (LLC) is a holistic approach to achieve the best quality of life. Aim(s): Highlighting collaboration between pediatric and PC services is essential in providing seamless…
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 Government policy identifies home as the preferred place of death (PPOD) for children and young people (CYP) and suggests a home death as an indicator of the quality of care. A recent systematic review found a lack of compelling evidence…
Background Supporting siblings following loss of an infant is increasingly recognised as an important aspect of neonatal bereavement support. The grief process in children is often complicated by feelings of loss, guilt as well insecurity about their…
Introduction: Pediatric residents are faced with ethical dilemmas in beginning- and end-of-life situations throughout their training. These situations are innately challenging, yet despite recommendations that residents receive training in ethics and…
Editor’s note: This new recurring feature will showcase novel hospital-based programs, innovations, and outreach initiatives that are meeting children’s health care needs in
Pediatric advance care planning seeks to ensure end-of-life care conforming to the patients/their families' preferences. To expand our knowledge of advance care planning and "medical orders for life-sustaining treatment" (MOLST) in pediatric…
Description: The Affordable Healthcare Act Section 2302 is a provision that changed the eligibility of children with life-limiting conditions to receive hospice-like services and thus created concurrent care programs. In California, there was…
Aims Children's hospices provide a range of services for children with life limiting (LLC) and life threatening conditions (LTC). Referral previously relied on obtaining supporting views from the child's paediatrician and there was often delay…
The specialist provision of paediatric palliative care is a relatively new discipline. This article will review the epidemiology of paediatric palliative care and will discuss the current delivery of this care within the United Kingdom. The author…
Introduction. Parents of a child diagnosed with a life-threatening illness often experience the state of cognitive and emotional disorganization. The key factor determining parents-physicians cooperation is the quality of their relations. That is why…
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…
BACKGROUND: Disparities in end-of-life (EOL) care for children with cancer remain understudied. We addressed this gap by examining patterns of EOL care, with a focus on location of death and hospice utilization. METHODS: We used MarketScan - a…
BACKGROUND: Many of the leading causes of infant mortality are diagnosed prenatally, presenting providers with the ability to present perinatal palliative care planning as an option. OBJECTIVE: Our study adds to the literature both by describing…
BACKGROUND: Intractable feeding intolerance in children with severe neurological impairment (SNI) is poorly defined and understood. OBJECTIVE(S): (1) To describe 9 children with SNI, where intractable feeding intolerance was thought to be a…
Context: Most hospice nurses across Tennessee, Arkansas, and Mississippi report significant discomfort with provision of pediatric palliative and hospice care (PPHC). How best to target and modify variables to increase nurse comfort levels is not…
Context Approximately 500,000 children in the United States suffer from life-limiting illnesses each year, many of whom are hospice eligible each year. Few hospice agencies, however, offer formal pediatric programs. Objective To determine the levels…
