BACKGROUND: We aimed to describe pre-existing factors associated with severe disease, primarily admission to critical care, and death secondary to SARS-CoV-2 infection in hospitalised children and young people (CYP), within a systematic review and…
Children with neurodisability (ND) represent a significant population with a demonstrated need for coordinated support. Patient navigation has a primary focus on: facilitating access to and connection amongst fragmented systems; as well as the…
OBJECTIVES: To examine parents' perceptions of nursing care needs; including specific concerns, preferences and supportive actions for themselves and their dying child during and following the withdrawal of life support in the paediatric intensive…
Objectives To identify pediatric patient-reported outcomes (PROs) that are associated with chronic conditions and to evaluate the effects of chronic disease activity on PROs. Study design Participants 8-24 years-old and their parents were enrolled…
BACKGROUND An increasing number of children have complex care needs (CCN) that impact their health and cause limitations in their lives. More of these youth are transitioning from pediatric to adult healthcare due to complex conditions being…
With the frequency of infant deaths in the United States, many attributed to congenital malformations and prematurity, the neonatal intensive care unit (NICU) nurse must be adept at planning and providing perinatal palliative care. The NICU nurse…
CONTEXT: Given workforce and funding constraints, pediatric hospice and palliative care clinicians often find challenges providing services for seriously ill children and families, particularly in low resource and rural/remote areas. OBJECTIVES: To…
BACKGROUND: Children at end of life have unique and complex care needs. Although there is increasing evidence about pediatric concurrent hospice care, the health care services received while in hospice have not received sufficient attention.…
OBJECTIVES: Pediatric out-of-hospital cardiac arrest (OHCA) is associated with significant morbidity and mortality. Pediatric palliative care (PPC) services could provide an integral component of the comprehensive care necessary for these patients…
Historically, the goal of care in a pediatric or neonatal intensive care unit was to do everything medically possible to cure illness or prolong life. When curative therapies were no longer appropriate, the approach was to turn to end-of-life care.…
BACKGROUND: End-of-life decision-making for terminally ill neonates raises important legal and ethical issues. In Greece, no recent data on nurses' attitudes and involvement in end-of-life decisions are available. RESEARCH QUESTION/AIM: To…
Introduction Multimorbidity, the co-occurrence of a chronic physical condition and mental disorder, affects a substantial number of children and youth and can lead to compromised quality of life, hardship for families, and an increased burden on the…
OBJECTIVES: We sought to characterize the nature and prevalence of medication order errors (MOEs) occurring at hospital admission for children with medical complexity (CMC), as well as identify the demographic and clinical risk factors for CMC…
OBJECTIVE: Reducing emergency department (ED) use in children with complex chronic conditions (CCC) is a national health system priority. Emergency department visits with minimal clinical intervention may be the most avoidable. We assessed…
BACKGROUND AND OBJECTIVES: Genetic testing is expanding among ill neonates, yet the influence of genetic results on medical decision-making is not clear. With this study, we sought to determine how different types of genetic information with…
Background: There is limited data on home-based pediatric palliative care (PPC) demographics and utilization outcomes. Objective(s): Describe who receives home-based PPC and compare emergency department visits, hospital admissions, and hospital days…
In Poland, guidelines for the management of ineffective treatment of children in neonatal and paediatric departments developed by the Polish Neonatal Society and the Polish Paediatric Society, have been published. The specific problems of futile…
OBJECTIVES: Care for children with severe neurologic impairment (SNI) often involves complex medical decision-making where therapeutic alliance between clinicians and families is essential. Yet, existing data suggest that communication and alliance…
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 and Objectives: Working in pediatric and neonatal intensive care units (ICUs) can be challenging and differs from work in adult ICUs. This study investigated for the first time the perceptions, experiences and challenges that healthcare…
Purpose: This study aimed to determine the feasibility and acceptability of using videography to alleviate the stress of anticipatory mourning in pediatric palliative care patients. A secondary aim was to expand palliative/end of life care research…
Adolescents living with chronic conditions (ALWCCs) are at a higher risk of suicide (odds ratio: 4.3) than their peers. No consensus exists in the scientific community on a definition or conceptual elements of emotional well-being in this vulnerable…
BACKGROUND: Children's hospices provide a range of services for babies, children and young people who have a life-limiting or life-threatening condition, including care after death in specialist 'cool bedrooms'. Care after death is a challenging but…
Context Many pediatric hospitals offer legacy interventions for families to promote coping and support grief prior to and following the death of a child. Despite this practice, parent perceptions of the value of legacy activities are not well…
BACKGROUND: Mortality and end-of-life decision-making can occur in newborns, especially within the Neonatal Intensive Care Unit. For parents, participating in end-of-life decision-making is taxing. Knowledge is lacking on what support is helpful to…
Children's agency in their own lives is increasingly recognised as important, including within paediatric health care. The issue of acknowledging child agency is complex in the context of paediatric palliative care, where children have serious and…
Although frequently overshadowed by adult mortality rates and bereavement care needs, the death of a child can significantly jeopardize the physical, psychosocial, and emotional health of surviving parents, caregivers, and family members.…
Background: Children with life-limiting conditions receive specialist paediatric care in childhood, but the transition to adult care during adolescence. There are concerns about transition, including a lack of continuity in care and that it may lead…
BACKGROUND: Bereavement after the death of a child is devastating and associated with worse physical and psychosocial well-being in parents. Evidence suggests that parents desire and benefit from support provided by other bereaved parents. To foster…
Outcomes 1. Review the limited literature on barriers to provision of pediatric hospice care to children in the community and define the challenge of better equipping community-based hospice nurses to care for pediatric patients 2. Describe outcomes…
BACKGROUND: Early identification of patients in the pediatric intensive care unit (PICU) at risk of nutritional status (NS) deterioration and poor outcomes is desirable. We aimed to identify factors associated with NS deterioration and prolonged PICU…
The emotional turmoil associated with extremely preterm birth is inescapable parents. How each parent handles the unexpected, makes sense of the unknown and learns to parent their child is uniquely personal. A rigid standardized approach to support…
Poor access to care is a top patient-oriented research priority for youth with chronic pain in Canada, and the COVID-19 pandemic has exacerbated these concerns. Our patient-oriented project team engaged with marginalized and racialized youth with…
The research agenda in pediatric hospital medicine has seldom considered the perspectives of young people, parents and caregivers, and health care professionals. Their perspectives may be useful in identifying questions on topics for research.To…
BACKGROUND: Parents' perceptions of critical care during the final days of their child's life shape their grief for decades. Little is known about nursing care needs of children actively dying in the pediatric intensive care unit (PICU). OBJECTIVES:…
BACKGROUND: Palliative sedation is consciously reducing the patient's consciousness to alleviate the refractory symptoms. However, studies on palliative sedation for children are scarce. We aimed to survey the symptom control and risks for children…
Background: One major challenge to the conduct of rigorous neonatal palliative care research is the lack of robust universally agreed upon definitions of key concepts central to pediatric and neonatal palliative care. Objective: We sought to define…
IMPORTANCE: Children with medical complexity (CMC) have substantial health care needs and frequently experience poor health care quality. Understanding the population prevalence and associated health care needs can inform clinical and public health…
BACKGROUND: The concept of pediatric palliative care (PPC) is applied differently within the healthcare system and among healthcare professionals (HCPs). To our knowledge, no studies have investigated how multidisciplinary HCPs understand the concept…
BACKGROUND AND OBJECTIVES: There is a gap in family knowledge of their adolescents' end-of-life (EOL) treatment preferences. We tested the efficacy of Family Centered Advance Care Planning for Teens with Cancer (FACE-TC) pediatric advance care…
