Browse Items (111 total)

BACKGROUND: Paediatric palliative care (PPC) aims to improve children's quality of life, but this outcome is rarely measured in clinical care. PPC is provided in Belgium through six transmural paediatric liaison teams (PLTs) ensuring continuity of…

BACKGROUND: More than a quarter of global neonatal deaths are reported from India, and a large proportion of these deaths are preventable. However, in the absence of robust public health care systems in several states in India, informal health care…

Context: Vaccine preventable diseases lead to distressful symptoms and complications among pediatric patients receiving specialized home palliative care. There was no data on the vaccination compliance.Objective: The objective was to determine the…

BACKGROUND: For terminally sick neonates and their families, it's crucial to provide holistic nursing care that incorporates both curative and palliative care as much as feasible. It is well known that the biggest obstacle to delivering palliative…

The debate on limiting futile therapy in the aspect of End of Life (EoL) care has been going on in Poland over the last decade. The growing demand for EoL care resulting from the aging of societies corresponds to the expectation of a satisfactory…

Background: High-quality hospice care is characterized by patient-centered care and shared decision making between patients, families, and health care workers. However, little is known regarding the frequency and characteristics of patient and family…

OBJECTIVE: To shorten the Patient Engagement In Research Scale (PEIRS) to its most essential items and evaluate its measurement properties for assessing the degree of patients' and family caregivers' meaningful engagement as partners in research…

OBJECTIVES: To identify the degree of concordance and characterize demographic and clinical differences between commonly used definitions of multisystem medical complexity in children hospitalized in children's hospitals. METHODS: We conducted a…

BACKGROUND AND OBJECTIVE: To assess the racial and ethnic disparity in the prevalence of complex chronic conditions (CCC) and/or in-hospital death among US-born very low birth weight (VLBW,

IMPORTANCE: Lack of pediatric end-of-life care quality indicators and challenges ascertaining family perspectives make staff perceptions valuable. Cardiac intensive care unit (CICU) interdisciplinary staff play an integral role supporting children…

BACKGROUND: Although pediatric health care use declined during the coronavirus disease 2019 (COVID-19) pandemic, the impact on children with complex chronic conditions (CCCs) has not been well reported. OBJECTIVE: To describe the impact of the…

Background: Pediatric nurses are particularly vulnerable to moral distress and turnover due to frequent experiences with patient death combined with limited pediatric palliative resources and related support. Objective(s): This study examined…

BACKGROUND: Pediatric end of life (EOL) care involves complex coordination of providers from multiple disciplines. Many of these providers' experiences have not been completely described. AIM: This study aims to explicate the alignment and divergence…

IMPORTANCE: Parents of children with severe neurological impairment (SNI) manage complex medication regimens (CMRs) at home, and clinicians can help support parents and simplify CMRs. OBJECTIVE: To measure the complexity and potentially modifiable…

OBJECTIVE: Parent engagement in perinatal mortality review meetings following stillbirth may benefit parents and improve patient safety. We investigated perinatal mortality review meeting practices, including the extent of parent engagement, based on…

OBJECTIVE: To quantify moral distress in neonatal ICU and PICU clinicians and to identify associated factors. DESIGN: A national cross-sectional survey of clinicians working in an neonatal ICU or PICU. Moral distress was assessed with the Moral…

BACKGROUND: Neonatal resuscitation is a life-saving intervention for birth asphyxia, a leading cause of neonatal mortality. Worldwide, four million neonate deaths happen annually, and birth asphyxia accounts for one million deaths. Improving…

BACKGROUND: Research found that low levels of professional confidence and personal comfort among neonatal clinicians regarding palliative care may indicate a lack of competence and hesitancy to offer neonatal palliative care services. PURPOSE: This…

AIM: We investigated relationships between hand function and genotype and aspects of phenotype in Rett syndrome. METHOD: Video assessment in naturalistic settings was supplemented by parent-reported data in a cross-sectional study of 144 females with…

BACKGROUND: Pantothenate kinase-associated neurodegeneration is a progressive neurological disorder occurring in both childhood and adulthood. The objective of this study was to design and pilot-test a disease-specific clinical rating scale for the…

OBJECTIVE: Previous work in pediatric oncology has found that clinicians and parents tend to under-report the frequency and severity of treatment-related symptoms compared to child self-report. As such, there is a need to identify high-quality…

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:…

PURPOSE: Systematic knowledge about the prevalence and the treatment effects of cancer pain in patients attending a general oncology outpatient department is limited. The purpose of this study was to investigate the prevalence of pain in a large…

CONTEXT: Approximately 25% of children diagnosed with cancer eventually die. Losing a child puts parents at increased risk for developing psychological problems. OBJECTIVES: To explore parents' perceptions of the interaction with health care…

UNICEF and the International Children's Palliative Care Network undertook a joint analysis in three sub-Saharan countries-Zimbabwe, South Africa, and Kenya-to estimate the palliative care need among their children and to explore these countries'…

OBJECTIVES: To explore parents' and caregivers' experience, knowledge, and preferences regarding advance directives (ADs) for children who have chronic illness. METHODS: We conducted a prospective, cross-sectional survey of parents and caregivers of…

BACKGROUND: Parents' perceptions of the quality of information communicated by their child's oncologist about the child's cancer are not well understood. PROCEDURE: We conducted a cross-sectional survey of 194 parents of children with cancer…

OBJECTIVES: To validate five items (CPWQ-inf) regarding satisfaction with information provided to cancer patients from health care staff, assess the prevalence of dissatisfaction with this information, and identify factors predicting dissatisfaction.…

BACKGROUND: Coping with grief after a child's death is a complex and dynamic process. The Two-Track Model of Bereavement, which served as the theoretical framework for this study, examines biopsychosocial reactions to bereavement (track I) and…

The purposes of research were to describe the neonatal clinicians' personal views and attitudes on neonatal ethical decision-making, to identify factors that might affect these attitudes and to compare the attitudes between neonatal physicians and…

BACKGROUND: Neuropathic pain causes greater pain intensity and worse quality of life than nociceptive pain. There are no published data that confirm this in the cancer population. AIM: We hypothesised that patients with neuropathic cancer pain had…

INTRODUCTION: The possibility of sustaining life functions makes it difficult to distinguish between a dying patient and a patient with chances of survival, raising a dilemma for everyone around them. On the one side, continuing with life support…

IMPORTANCE: Parents' beliefs about what they need to do to be a good parent when their children are seriously ill influence their medical decisions, and better understanding of these beliefs may improve decision support. OBJECTIVE: To assess parents'…
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