BACKGROUND: At the end of life, children with neurological conditions have complex healthcare needs that can be met by providing care of their life-limiting conditions concurrently with hospice care (ie, concurrent care). Given the limited literature…
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…
Caring for a child with a serious or life-limiting illness presents many challenges for families and health care providers. Through that experience (and, many times, as it ends), parents are compelled to find and make meaning from their ultimate loss…
Background: Research remains inconclusive regarding the impact of specialist pediatric palliative care (SPPC) on health care utilization and cost. Objective: To better understand and quantify the impact of regional SPPC services on children's health…
Death by neurologic criteria is a diagnosis that has presented complexities since its inception and pediatric cases are no exception. While rare, families may request accommodation to deviate from the traditionally defined diagnostic pathway based on…
CONTEXT: The death of a child is devastating, and complicated grief adversely impacts parental physical and psychosocial well-being. Most research currently is centered on bereaved mothers, and the experiences of fathers remains underexplored.…
Aim: To identify and assess the quality of decision aids that align the decision, values and information provided for parents making end-of-life or palliative care decisions for children with life-threatening conditions. Method(s): Six databases and…
BACKGROUND: Currently, to the best of our knowledge, no findings exist concerning the needs of professionals in specialized pediatric palliative care (PPC) regarding electronic health records (EHRs). Several studies have highlighted benefits…
PURPOSE OF REVIEW: Vulnerable children with medical complexity are silent victims of the COVID-19 pandemic, impacted by lack of resources and sick caregivers. In this article, we examine ways in which the pandemic has increased the significant…
Fathers are under-represented in pediatric palliative care research despite frequently playing a key role in the lives of their children. The purpose of this study was to identify factors that affected paternal study invitation and participation. A…
BACKGROUND: Children using home mechanical ventilation (HMV) live at home with better quality of life, despite financial burden for their family. Previous studies of healthcare utilization and costs have not considered public and private…
Background Children with cancer are increasingly using cannabis therapeutically. Aim The purpose of this study was to determine the perspectives and practices of pediatric oncologists and palliative care physicians regarding the use of cannabis for…
OBJECTIVE: To develop and face-validate population-level indicators for potential appropriateness of end-of-life care, for children with cancer, neurological conditions, and genetic/congenital conditions, to be applied to administrative health data…
INTRODUCTION: Many children are born with life-limiting illnesses. Medical decision-making for these children by caregivers is complex and causes significant psychosocial distress, which can be partially alleviated by effective communication with…
Determining the optimal dosing regimen for pediatric patients is a challenge due to the lack of dosing guidelines and studies. In addition, many developmental pharmacology changes that occur throughout childhood that have profound impacts on the…
Abstract Context: Insufficient communication from the medical team following a child's death may compound parental grief. Pediatric residents care for children who die, yet the landscape of condolence expression education within residency programs…
Background: To allay uneasiness among clinicians and institutional review board members about pediatric palliative care research and to yield new knowledge relevant to study methods, documenting burdens and benefits of this research on children and…
Background and Objective : Approximately 73% of children with severe neurological impairment (SNI) can experience episodes of pain and irritability often of unknown origin (PIUO). Limited research exists on how these experiences of PIUO may affect…
BACKGROUND AND OBJECTIVES: Pediatric palliative care (PPC) is integral to the care of children living with serious illnesses. Despite the growth in the number of established palliative care programs over the past decade, little is known about the…
Pediatric palliative care providers are especially suited to support families and medical teams facing a potential diagnosis of brain death, or death by neurologic criteria (DNC), when a child suffers a devastating brain injury. To support pediatric…
Background: Rady Children's Hospital (RCH) offers an outpatient pediatric palliative clinic that began offering telepalliative care in 2016. Objectives: This study describes demographics of parents receiving pediatric telepalliative care,…
BACKGROUND: Collaboration between parents and professional care providers is an essential part of pediatric palliative care. As children are embedded in family systems and many of the patients are not able to communicate verbally, their parents are…
BACKGROUND: Palliative care is an important component of pediatric oncology care, especially for children who will not be cured of their disease. However, barriers remain to integration of this service. One barrier is the perception that it indicates…
PURPOSE: Novice and experienced professionals who care for children with life limiting conditions throughout Australia were provided with pediatric palliative care (PPC) education through the Quality of Care Collaborative Australia (QuoCCA). Impact…
Venous thromboembolism (VTE) is a leading cause of morbidity and mortality among hospitalized patients, including children. In recent years, it has become clear that hospitalization and critical illness bestow an increased VTE risk in pediatrics and…
BACKGROUND: Although the importance of palliative care in pediatric patients has been emphasized, many health care providers have difficulty determining when patients should be referred to the palliative care team. The Paediatric Palliative Screening…
Recessive dystrophic epidermolysis bullosa (RDEB) is associated with high nutritional demands, esophageal strictures and dysphagia. About one quarter of the patients require gastrostomy tube placement to maintain adequate nutritional status. To…
BACKGROUND: A critical aspect of pediatric palliative care consultations is the assessment and documentation of patient and family needs. While these assessments usually include a focus on physical pain, there is less standardization of assessments…
The purpose of this study is to analyze the experience of hope that appears in a parent's blog presenting everyday life while caring for a child with Trisomy 18 (Edwards syndrome). The author, Rebekah Peterson, began her blog on 17 March 2011 and…
BACKGROUND AND OBJECTIVES: Little is known about how families respond to pediatric advance care planning. Physicians are concerned that initiating pediatric advance care planning conversations with families is too distressing for families. We…
BACKGROUND: Children with neurologic impairment (NI) are at risk for developing co-occurring chronic conditions, increasing their medical complexity and morbidity. We assessed the prevalence and timing of onset for those conditions in children with…
OBJECTIVES: To characterize patterns of surgery among pediatric patients during terminal hospitalizations in children's hospitals. METHODS: We reviewed patients ≤20 years of age who died among 4 424 886 hospitalizations from January 2013-December…
Parents of ill children have willingly identified their personal beliefs about what they should do or focus on to fulfill their own internal definition of being a good parent for their child. This observation has led to the development of the…
* Abbreviations: IRB — : institutional review board PPC — : pediatric palliative care Patient- and family-centered care “is an innovative approach to the planning, delivery, and evaluation of health care that is grounded in a…
BACKGROUND: Specialized pediatric palliative care programs aim to improve quality of life and ease distress of patients and their families across the illness trajectory. These programs require further development, which should be based on how they…
Objectives: To investigate the focuses and trends of the studies on pediatric palliative care (PPC) and provide directions for future research. Method(s): Relevant papers about PPC published from 2004 to 2018 were analyzed using bibliometric analysis…
It is estimated that between 14.8% and 18% of all youths in North America have a chronic health condition or a special health care condition (eg, impairments, such as musculoskeletal impairments, speech defects, deafness and hearing loss, blindness…
Background: Bereaved parents value receiving support from their children's health care teams. Pediatric residents are important members of the teams that care for children at end of life and can play a meaningful role in communication with bereaved…
Context: There is an ongoing established need to develop engaging pain assessment strategies to provide more effective individualized care to pediatric patients with serious illnesses. This study explores the acceptability of wireless devices as one…
PURPOSE: This study is aimed to investigate the effect of web-based pediatric palliative care education on nursing students' knowledge level and practices related to palliative care.
