Abstract Background: Little is known about how physician and parent perspectives compare regarding the prognosis and end-of-life (EOL) experience of children with advanced heart disease (AHD). Objective: The study's objective was to describe and…
OBJECTIVE: End-of-life discussions with patients can be one of the most difficult and stressful tasks for the oncologist. However, little is known about the discussions that healthcare providers have with patients in such situations and the…
OBJECTIVE: The primary endpoints of this study were: (1) to explore the distressing experiences of parents of patients with intractable pediatric cancer in Japan from disclosure of poor prognosis to the present and (2) to explore support they…
OBJECTIVE: The role of coping in chronic pain management is well established. One challenge to the coping approach, however, is in identifying forms of coping that reliably lead to better functioning. An emerging approach to coping is based on the…
Moral distress has been identified in multiple clinical settings especially in critical care areas. The neonatal intensive care unit (NICU) has frequent situations in which moral distress may occur including providing palliative care. The purpose of…
OBJECTIVE: To estimate the association between birth weight percentile and the risk of perinatal death at term in relation to the cause of death. METHODS: We performed a retrospective cohort study of all term singleton births in delivery units in…
OBJECTIVE: To determine the epidemiology of death in PICUs at 5 geographically diverse teaching hospitals across the United States. DESIGN: Prospective case series. SETTING: Five U.S. teaching hospitals. SUBJECTS: We concurrently identified 192…
no abstract Key Points * Assemble an interdisplinary team to design the mobile app to meet the needs of clinical users. * Plan for marketing, “keeping it fresh,” and large data volumes when implementing a mobile app. * See beyond the current…
PURPOSE: The current study was undertaken (1) to capture a clinically relevant, systematically collected series of patients with metastatic cancer and transfusion-associated vaginal bleeding and (2) to provide insight into how best to palliate this…
BACKGROUND: Late-onset sepsis (LOS) in very low birth weight (VLBW) infants is associated with significant morbidity and mortality. The ability to predict mortality in infants with LOS based on clinical and laboratory factors at presentation of…
Nonpharmacologic, mind-body interventions are used to reduce anxiety in pediatric patients. Anti-ganglioside GD2 monoclonal antibody (anti-GD2 MoAb 3F8) therapy is the standard of care for high-risk neuroblastoma and pain is its major side effect. We…
OBJECTIVE:: This position statement from the Canadian Task Force on Adolescents and Young Adults with cancer aims to (1) conceptualize the numerous transition experiences encountered by adolescents and young adults (AYA) with cancer; and (2) provide…
A 15-year-old girl with combined immune deficiency syndrome, diagnosed with metastatic squamous cell cancer of the anus, had significant pain secondary to vulvar-perianal condyloma. Conventional treatment with oral and intravenous analgesics was…
BACKGROUND: There is a positive relationship between parent and young child distress during cancer treatment. Dimensions of parent/child distress are multifaceted and associated with family function and quality of life outcomes. A critical…
BACKGROUND:: This is the first study to use meta-analysis as a scientific technique to provide an integrated analysis of the effectiveness of music intervention in cancer patients. OBJECTIVES:: The purpose of this study was, using the meta-analysis…
BACKGROUND:: Studies involving samples of children with life-threatening illnesses and their families face significant challenges, including inadequate sample sizes and limited diversity. Social media recruitment and Web-based research methods may…
School nurses are a source of support for teachers who have students with life-threatening conditions, and they provide support to school staff, families, and children. However, little is known regarding the questions they encounter and their desired…
PURPOSE: To evaluate the impact of the introduction of a new pediatric palliative care program on the pattern of moral distress in pediatric healthcare providers (HCPs). STUDY DESIGN AND METHODS: We used a before and after cross-sectional survey…
Integral to the care of medically fragile infants and children is the sobering reality that not all will survive. Supporting children and families through the dying process requires knowledge, skill, compassion, and a willingness to be present to the…
OBJECTIVE: To describe parent perspectives regarding the end-of-life experience of children with advanced heart disease. DESIGN: Cross-sectional multicenter survey study of bereaved parents. SETTING: Two tertiary care pediatric hospitals. SUBJECTS:…
OBJECTIVE: This review highlights benefits that patients, families and clinicians can expect to realize when palliative care is intentionally incorporated into the PICU. DATA SOURCES: We searched the MEDLINE database from inception to January 2014…
PURPOSE OF REVIEW: To review the role of pediatric palliative care (PPC) for children with metabolic and neurological diseases. RECENT FINDINGS: There is a growing body of literature in PPC, though it remains limited for children with metabolic and…
The work of perinatal nurses sometimes includes emergencies involving death, or near death, which can leave health care providers with feelings of stress and grief. After experiencing a particularly stressful period, nurses at our organization…
This study explored British and Pakistani 4- to 7-year-olds' (N = 188) understanding of death. The aim was to examine possible influences on the acquisition of the subcomponents of the death concept by investigating how they are understood by…
BACKGROUND: Planning for care at the end of life (EoL) is an essential component of support and care for families of children with life-limiting conditions. The purpose of this review was to compare documented EoL planning with published children's…
BACKGROUND: In the terminal stages of neuro-metabolic diseases, parents can begin to experience a sense of loss even before the child dies, and might accept death prematurely. CASES: A 2.5-year-old female patient with Sandoff Disease (diagnosed at 9…
AIM: This study aimed to systematically review the psychometric properties and clinical utility of measures of activities of daily living (ADL) for children with cerebral palsy (CP) aged 5 to 18 years. METHOD: Five electronic databases were searched…
AIM: The aim of the study was to determine survival probabilities and life expectancies for individuals with cerebral palsy based on data collected over a 28-year period in California. METHOD: We identified all individuals with cerebral palsy, aged 4…
AIM: In childhood, severe psychomotor impairment (SPMI) is associated with profound sleep disturbances. With the help of newly developed and validated measures, we systematically assessed how much a child's sleep disturbance affects parental sleep…
AIMS AND OBJECTIVES: To draw out the similar complexities faced by staff around truth-telling in a children's and adult population and to interrogate the dilemmas faced by staff when informal carers act to block truth-telling. BACKGROUND: Policy…
OBJECTIVE: Pain medicine still lacks mechanism-specific biomarkers to guide diagnosis and treatment, and defective top-down modulation is an important factor in the pathophysiology of chronic pain conditions. Using modern analytical tools and…
OBJECTIVE: Measurement of pain interference in children is challenged by a lack of validated measures with a parent proxy report. This study investigated the psychometric properties of the Pain Interference Index (PII), a six-item questionnaire…
Chronic pain is an important clinical problem affecting significant numbers of children and their families. The severity and impact of chronic pain on everyday function is shaped by the complex interaction of biological, psychological and social…
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:…
Increasing numbers, complexities and technology dependencies of children and young people with life-limiting conditions require paediatricians to be well prepared to meet their changing needs. Paediatric Advance Care Planning provides a framework for…
