Browse Items (63 total)

OBJECTIVES: To determine which prognostic information sources parents find informative and which are associated with better parental understanding of prognosis. METHODS: Prospective, questionnaire-based cohort study of parents and physicians of…

PURPOSE: This study examined the provision of palliative care and related decision-making in Swiss pediatric oncology settings. The aim was to determine if and when children who died from cancer received palliative care, whether there were…

OBJECTIVE: This multicenter, parallel-group, randomized trial examined the effects of an animal-assisted intervention on the stress, anxiety, and health-related quality of life for children diagnosed with cancer and their parents. METHOD: Newly…

CONTEXT: Early integration of palliative care (PC) in the management of children with high-risk cancer is widely endorsed by patients, families, clinicians, and national organizations. However, optimal timing for PC consultation is not standardized,…

BACKGROUND: Due to psychological distress and an increased care burden, parents of children diagnosed with cancer may face a higher risk of sickness absence from work. The objective of this study was to examine the association of childhood cancer…

Objectives: The goal of this study was to assess pediatric oncology providers' perceptions of palliative care in order to validate previously identified barriers and facilitators to early integration of a pediatric palliative care team (PCT) in the…

Background: Cancer remains the leading medical cause of death in children. Ensuring quality of life should be a priority, but it may be difficult to stop treatments, particularly in settings where palliative care is scarce. Little is known about how…

BACKGROUND: Although medical marijuana (MM) may have utility in the supportive care of children with serious illness, it remains controversial. We investigated interdisciplinary provider perspectives on legal MM use in children with cancer.METHODS:…

Children with medical complexity (CMC) are a subset of children and youth with special health care needs with high resource use and health care costs. Novel care delivery models in which care coordination and other services to CMC are provided are a…

Those in hospitals and health care systems, when designing clinical programs for children with medical complexity, often talk about needing to develop and implement a system of risk stratification. In this article, we use the framework of an ethical…

It is estimated that 6.3 million children who die annually need pediatric palliative care (PPC) and that only about 10% of them receive the attention they need because about 98% of them live in under-resourced settings where PPC is not accessible.…

BACKGROUND: While the importance of pediatric palliative care (PPC) for children with life-threatening illness is increasingly recognized, little is known about physicians' attitudes toward palliative care for children with heart disease. OBJECTIVE:…

OBJECTIVES: Several barriers have been identified as preventing or delaying accessing to children's palliative care services. The aim of this study is to further explore such barriers from palliative care professionals' perspective from two London…

OBJECTIVE: The objective of this study was to describe and quantify the impact of caring for a child with Dravet syndrome (DS) on caregivers. METHODS: We surveyed DS caregivers at a single institution with a large population of patient with DS.…

PURPOSE: To explore bereaved parents' perspectives of parent and staff roles in the pediatric intensive care unit when their child was dying, and their relationships with healthcare staff during this time. DESIGN AND METHODS: Constructivist grounded…

The end-of-life management of children with diffuse intrinsic pontine glioma (DIPG) is challenging. Families cope with debilitating symptoms and make complex decisions regarding their child's care. However, there is little evidence guiding palliative…

Background: Over the last decade, paediatric palliative care teams (PPCTs) have been introduced to support children with life-limiting diseases and their families and to ensure continuity, coordination and quality of paediatric palliative care (PPC).…

Decisions to initiate long-term ventilation (LTV) for children with medical complexities often involve unclear risk/benefit ratios. Although the technology may prolong a child's life, the added months to years could largely be spent in the hospital,…

Background: One goal of pediatric palliative care is to maintain quality of life for children and their families. Quality-of-life investigations may be enhanced by considering clinically important metrics in addition to statistical significance.…

Background: Parenting children with life-threatening illness (LTI) and their healthy siblings requires parents to consider their various needs. Objective and Methods: We conducted a concurrent, cross-sectional mixed-methods study to describe…

Background: In children with profound intellectual and multiple disabilities (PIMD), discussions about end-of-life decisions (EoLDs) are comparatively common. Nurses play a crucial role in the care for these children, yet their involvement in EoLD…

Context California implemented pediatric palliative care legislations that allowed children to receive curative and supportive care from diagnosis of a life-threatening serious illness in 2010. Palliative care policies may improve access to hospice…

An integrated palliative care plan with goals of therapy that change throughout a child's illness will reflect an individualized, child-centered, and family-centered approach to care. This care plan will act as a foundation to assist and guide all…

Aims and objectives To report parent and professional perspectives of step-down care in assisting the transition from hospital to home, within one children's hospice in a constituent country of the United Kingdom. Background In recent years,…

Objective: To map and describe the geographic distribution of pediatric hospice care need versus supply in California over a 4-year time period (2007-2010). Methods: Multiple databases were used for this descriptive longitudinal study. The sample…

BACKGROUND: Pediatric palliative care (PPC) is the active total care of children suffering from life-threatening illnesses. Palliative care includes symptom management, psychosocial support, and end-of-life care. Despite significant advances in…

Objectives: Anticipating case management is considered crucial in pediatric palliative care. In 2012, our children�s university hospital initiated a specialized pediatric palliative care team (PPCT) to deliver inbound and outbound case management for…

OBJECTIVE: To assess the prevalence of symptoms of acute stress reactions (ASR) and post-traumatic stress disorder (PTSD) in paediatric trainees following their involvement in child death. DESIGN: A survey designed to identify trainees' previous…

BACKGROUND: End-of-life decisions (EoLDs) are very difficult to make. How parents and physicians incorporate quality of life (QoL) considerations into their end-of-life decision making (EoLDM) for children with profound intellectual and multiple…

BACKGROUND: Children's hospices are a key provider of palliative care for children and young people with life-limiting and life-threatening conditions. However, despite recent policy attention to the provision of paediatric palliative care, little is…

The death of a child can be seen as one of the most devastating experiences for parents which can result in a unique and enduring grief. Parents with surviving children face the task of navigating their own grief while continuing to parent. This…

Bereaved families that collectively make meaning of their grief experiences often function better than those that do not, yet most social work bereavement interventions target individuals rather than family units. In this article, authors describe an…

Healthcare providers influence the experiences of families during end of life care and death of a child*. Nurses are best placed to provide bereavement support as they have opportunities to build therapeutic relationships through closely and…

As the demand for pediatric palliative care (PC) increases, data suggest that Latino children are less likely to receive services than non-Latino children. Evidence on how to best provide PC to Latino children is sparse. We conducted a narrative…

Children with severe impairment of the central nervous system (CNS) experience gastrointestinal (GI) symptoms at a high rate and severity, including retching, vomiting, GI tract pain, and feeding intolerance. Commonly recognized sources of symptoms…
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