Browse Items (134 total)

CONTEXT: The COVID-19 pandemic has had a dramatic impact on palliative care delivery and patient experiences. Less is known about the experiences and responses of palliative care clinicians. OBJECTIVE: We aimed to describe the pandemic's impact on…

Significant difference exists between validated indications for noninvasive ventilation (NIV) use in children and current real life practice. Lately, dedicated centers have reported exponential growth of NIV use in children and adolescents. Upper…

INTRODUCTION: Caring for terminally ill children influences nurses' and allied health provider's quality of life, ability to provide personalized, dignified and empathetic care and even their concepts of personhood. In the absence of data this review…

Pediatric palliative care (PPC) literature was utilized to identify barriers for early initiation of palliative care at diagnosis among children with life-threatening diseases. Early integration of PPC enhances quality of life and reduces suffering…

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…

BACKGROUND: The involvement of speech and language therapists (SLTs) within paediatric palliative care (PPC) settings has been recognized within the extant literature. However, there is little understanding of SLT's specific roles and practices when…

Children are seeing rapid changes to their routines and facing an unpredictable future. Palliative care teams may consider expanding their communication training and skill sets to help families consider caring ways to communicate with their children…

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…

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…

Objectives: To describe and compare characteristics of care provided at the end of life for children with chronic complex conditions and neonates who died in an ICU with those who died outside an ICU. Design: Substudy of a nation-wide retrospective…

Background: Children and families in pediatric palliative care depend on close contact with health care personnel, and electronic health (eHealth) is suggested to support care at home by facilitating their remote interactions. Objective: This study…

OBJECTIVES: To describe and compare characteristics of care provided at the end of life for children with chronic complex conditions and neonates who died in an ICU with those who died outside an ICU. DESIGN: Substudy of a nation-wide retrospective…

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…

Little is known about pediatric caregivers’ perceptions of religious or spiritual (R/S) care provided by physicians. We conducted a qualitative, semistructured interview study to understand perceptions of pediatric caregivers toward physician-led R/S…

OBJECTIVES: Children with medical complexity (CMC) have high readmission rates, but relatively little is known from the parent perspective regarding care experiences surrounding and factors contributing to readmissions. We aimed to elicit parent…

Background Children and families in pediatric palliative care depend on close contact with health care personnel, and electronic health (eHealth) is suggested to support care at home by facilitating their remote interactions. Objective This study…

Background: End-of-life dreams and visions (ELDVs) are a recognized phenomenon that can occur as part of the normal dying process. Data suggest that ELDVs can provide comfort, foster discussion of waking life concerns, and lessen the fear of death.…

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…

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…

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…

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…

BACKGROUND:: Racial and ethnic disparities in the provision of end-of-life care are well described in the adult oncology literature. However, the impact of racial and ethnic disparities at end of life in the context of pediatric oncology remains…

There is a significant gap in the provision of palliative care for children living with HIV (CLHIV) in Indonesia. While Indonesia has one of the highest rates of HIV infection amongst children in Asia, there is limited availability and access to…

BACKGROUND: Although the need for palliative care is gaining recognition in Southeast Asia, knowledge about how decisions are made for children near the end of life remains sparse. OBJECTIVE: To explore pediatric intensivists' attitudes and practices…

BACKGROUND: Pantothenate kinase-associated neurodegeneration is characterized by severe, progressive dystonia. This study aims to describe the reported usage of cannabis products among children with pantothenate kinase-associated neurodegeneration.…

BACKGROUND: Rural pediatricians and adult-trained hospice teams report feeling ill-prepared to care for children at end of life, resulting in geographies in which children are not able to access home-based services. OBJECTIVES: To develop a pediatric…

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…

BACKGROUND: The interest in outcome measurement in pediatric palliative care is rising. To date, the majority of studies investigating relevant outcomes of pediatric palliative care focus on children with cancer. Insight is lacking, however, about…

Children with single ventricle congenital heart defects (SVCHD) experience a significant risk of early mortality throughout their lifespan, particularly during their first year of life. Due to the intense care needed for these children and families,…

OBJECTIVE: The importance of palliative care education for nurses has been recognized worldwide. The study aims to explore the experiences of nurses working with children with palliative care needs and to identify any related educational needs.…

OBJECTIVE: We sought to explore the beliefs regarding palliative care team utilization, as well as increase consultation and awareness of the palliative care team's role in the NICU. STUDY DESIGN: The study design in this Level 4 NICU included…

CONTEXT: In order to dramatically advance the evidence base for pediatric palliative care (PPC) interventions, practices, and programs in the United States and similar practice settings, the field needs to better understand the challenges and…

Context: All inpatient children receiving pediatric palliative care consults at a free-standing children's hospital.Objectives: To explore the impact of massage therapy on pediatric palliative care patients' symptom burden and medication use pattern,…

BACKGROUND: Despite advancements in treatment and survival, pediatric organ failure and transplant populations continue to face significant risks of morbidity and mortality. Little scientific attention has been given to addressing the end-of-life…

CONTEXT: In our increasingly multicultural society, providing sensitive and respectful pediatric palliative care is vital. OBJECTIVES: We held a one-day workshop conference with stakeholders and pediatric clinicians to identify suggestions for…

BACKGROUND: Parents of children with cancer have unmet information needs regarding future limitations resulting from cancer or its treatment. Prior research has demonstrated that, in early care discussions, clinicians focus on the acute effects of…

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…
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