Browse Items (106 total)

OBJECTIVE: This scoping review aimed to: 1) identify parent-reported experience measures (PaREMs) for parents of children with serious illnesses from peer-reviewed literature, 2) map the types of care experience being evaluated in PaREMs, 3) identify…

BACKGROUND: The circumstances and care provided at the end of a child's life have a profound impact on family members. Although assessing experiences and outcomes during this time is challenging, healthcare professionals have a responsibility to…

PURPOSE: This study aimed to evaluate and analyze the methodological quality of the published clinical practice guidelines (CPGs) for perinatal bereavement care and provide a reference for implementing best clinical practices. METHOD(S): We performed…

Context: Structural racism negatively impacts individuals and populations. In the medical literature, including that of palliative care, structural racism's influence on interracial differences in outcomes remains poorly examined. Examining the…

BACKGROUND: Paediatric palliative care provides supportive care to children with life-threatening or life-limiting illnesses throughout the disease trajectory. Up to 42% of children receiving palliative care in Canada will die within a freestanding…

Introduction: The purpose of the study was to test the effect of receiving pediatric concurrent hospice care on primary care visits. Method(s): This retrospective study was limited to pediatric decedents younger than 21 years with a hospice service…

Background: To design high-quality home-based hospice and palliative care (HBHPC) systems, it is imperative to understand the perspectives of parents whose children enroll in HBHPC programs. Objective(s): The goal of this project was to identify and…

BACKGROUND: Palliative care principles are known to support the experiences of children and their families throughout the illness trajectory. However, there is little knowledge of the parental perceptions of care delivered and gaps experienced by…

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.…

Children's hospices are key players in the provision of palliative care services for families with children with life-limiting conditions (LLCs). However, evidence suggests that some of the negative terminology/language which surrounds the notions of…

OBJECTIVE: To perform a systematic review of the health economic evidence on the care of children and adolescents with complex clinical conditions, comparing groups included and not included (control group) in palliative care at the end of life. DATA…

This study aimed to explore grandparents' experiences of grief after the death of a grandchild, their perception of socially supportive behavior as well as their satisfaction with a bereavement support care. A six-session bereavement support group…

PURPOSE: Pediatric hospice is a comprehensive model of care for medically complex children at end of life. The Affordable Care Act changed regulatory requirements for pediatric Medicaid enrollees to allow for enrollment into hospice services while…

Children, who enroll in hospice, have complex mental and behavioral health (MHBH) problems. There is limited literature on patterns of these problems among children at their end of life. Using the national database of 6195 children enrolled in…

OBJECTIVE: Ensure access to perinatal palliative care (PnPC) to all eligible fetuses/infants/parents. DESIGN: During 12 meetings in 2016, a multidisciplinary work-group (WG) performed literature review (Grading of Recommendations, Assessment,…

Background: Specialist paediatric palliative care services are promoted as an important component of palliative care provision, but there is uncertainty about their role for children with cancer. Aim(s): To examine the impact of specialist paediatric…

OBJECTIVES: Identifying the preferred place of death for children/young people with cancer and determining whether this is achieved is pertinent to inform palliative care service provision. The aims of this retrospective case series review were to…

Background: Palliative care is an important component of health care in pandemics, contributing to symptom control, psychological support, and supporting triage and complex decision making. Aim(s): To examine preparedness for, and impact of, the…

CONTEXT: Telemedicine has the potential to extend care reach and access to home-based hospice services for children. Few studies have explored nurse perspectives regarding this communication modality for rural pediatric cohorts. OBJECTIVES: The…

Background: To design high-quality home-based hospice and palliative care (HBHPC) systems, it is imperative to understand the perspectives of parents whose children enroll in HBHPC programs. Objective(s): The goal of this project was to identify and…

In 2010, forgoing curative therapies were removed as a hospice eligibility criterion for children through section 2302 of the Patient Protection and Affordable Care Act called Concurrent Care for Children. Given that concurrent care is a federally…

With increasing facilities for antenatal diagnosis, lowering gestation for intiation of intensive care, palliative care in the perinatal period is increasingly recognized as a specialist area. There have been standards and pathways developed in the…

OBJECTIVES: Place of death (POD) is considered a key quality indicator for adult end of-life care, but paediatric evidence is limited. Data from Child Death Overview Panel (CDOP) databases provides an opportunity to describe trends in POD as regional…

Background: Approximately 500,000 children in the United States suffer from serious illnesses each year and 50,000 die annually. Hospice and palliative care services are known to be beneficial for many children with serious illnesses and their…

Background: Community hospitals represent a unique setting to provide pediatric palliative care (PPC), given their usual proximity to a patient's home. Texas Children's Hospital, TheWoodlands (TCH-TW) is a community-based campus that opened in April…

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…

OBJECTIVES: Palliative care services have, up to now, paid insufficient attention to social aspects of dying and bereavement and this has affected how patients and their families experience end of life and bereavement within their communities. New…

This study describes the influence of a palliative care team on location of death and location of death discussions with patients/caregivers, and determines whether location of death discussions influence location of death. With palliative care or a…

Canuck Place Children's Hospice in Vancouver, Canada, has been hosting a massage therapy practicum within the hospice since 2011. The practicum is delivered by upper-level massage therapy students who are supervised by a registered massage therapist…

BACKGROUND: Children with serious illness who receive hospice care often interface with nurses who lack training, experience and comfort in the provision of paediatric palliative and hospice care. Hospice nurse preferences for paediatric-specific…

BACKGROUND: Children with life-limiting conditions often have complex needs, making it challenging for services to provide satisfactory care. Few studies consider whether services actually meet families' needs by exploring and identifying the…

Introduction: Patients may be admitted to hospital by paediatric palliative care units (PPCU) for different reasons, due to their different needs and clinical problems. The objective of this study is to present the data of patients admitted to the…

Background: Children suffering from adrenoleukodystrophy (ALD) requires life-long care. Little is known about the care needs of parents of ALD children at different stages of their disease. Purpose: The purpose of this study was to understand the…

Background/Objectives: Despite the dramatically improved outcomes for pediatric cancer patients, cancer is the leading cause of death in Taiwan, accounting for 21.8% of death in 2014. The pediatric end-of-life (EOF) care has not been extensively…

Traditionally, family-focused care extends to parents and siblings of children with life-limiting conditions. Only a few studies have focused on the needs of grandparents, who play an important role in the families of children with illness and with…

BACKGROUND: Children with intellectual disability commonly lack access to pediatric hospice care services. Residential care may be a critical component in providing access to hospice care for children with intellectual disability.…

Purpose: The purpose of this study was to generate baseline data on the health characteristics, health care utilization, and health care spending among privately insured adolescents and young adults (AYA), who were enrolled in hospice care during…

Background: The provision of pediatric palliative care in Asia Pacific varies between countries and availability of essential medications for symptoms at the end of life in this region is unclear. Objective: To determine medications available and…
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