Background: Consultation of specialty palliative care remains uncommon in pediatric stem cell transplant (SCT) despite growing evidence that early integration of palliative care improves outcomes in patients with advanced cancers or undergoing SCT.…
Problem Compassion Fatigue (CF) in healthcare professionals has been explored in multiple studies, but few focused on hospital-based pediatric nurses. The purpose of this integrative review is to synthesize the evidence about CF prevalence in nurses…
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…
Objectives: To describe the reasoning processes used by pediatric intensivists to make antibiotic-related decisions. Design: Grounded theory qualitative study. Setting: Three Canadian university-affiliated…
Lack of guidance and regulation for authorizing medical cannabis for conditions involving the health and neurodevelopment of children is ethically problematic as it promulgates access inequities, risk-benefit inconsistencies, and inadequate consent…
Background Family-centered care is an important concept underpinning care of children. Although much researched in some settings, little research has explored specialist settings, or areas where both children and adults are cared for, such as the…
OBJECTIVE: To explore factors that influence professionals in deciding whether to withdraw treatment from a child and how decision-making is managed amongst professionals as an individual and as a team. STUDY DESIGN: Semi-structured interviews were…
Few Korean hospitals had experience in pediatric palliative care. Since the beginning of the national palliative care project, interest in pediatric palliative care has gradually increased, but the establishment of professional palliative care is…
AIM: The aim of this work is to explore the unintended consequences of pandemic public health measures on health care service usage by children with medical complexity. BACKGROUND: Medical complexity is characterized by the presence of complex,…
CONTEXT: Since the publication of the IMPaCCT project in 2007, much effort has been made to develop new approaches to pediatric palliative care (PPC). Fifteen years later, it is time to redefine the standards in PPC. OBJECTIVES: An international…
AIM: To retrospectively explore the perspectives of parents of children with severe neurological impairment (SNI), such as those with severe cerebral palsy, epilepsy syndromes, and structural brain differences, on clinician counseling regarding home…
OBJECTIVES: To know the experiences of nurses in neonatal intensive care units in the face of the process of communicating bad news to the family of newborns in palliative care. METHODS: Study with a descriptive qualitative approach, in which 17…
In pediatric settings, the concept of hope is frequently positioned as a fundamental aspect of care and at odds with the possibility and proximity of death. This arguably fosters silence about death and dying in childhood despite evidence indicating…
PURPOSE: Little is known regarding medical neglect in children with Life-Threatening Complex Chronic Conditions (LT-CCCs). We examined the impact of COVID-19 on concern for medical neglect in this population. METHODS: Qualitative interview study of…
BACKGROUND: Evidence on the benefits to parents of spending time with their child in the hours after their death means this is now routine practice. UK children's hospices offer parents the opportunity to extend this period by using cooling…
BACKGROUND: Electronic medical records (EMRs) play a key role in improving documentation and quality of care in paediatric palliative care (PPC). Inadequate EMR design can cause incorrect prescription and administration of medications. Due to the…
Importance: The pediatric intensive care unit (PICU) exposes children to stressful experiences with potential long-term psychological repercussions. However, current understanding of post-PICU psychological outcomes is incomplete. Objective(s): To…
CONTEXT: A small, growing body of data exist discussing the experiences of Muslim patients with the palliative care system, both in the United States and abroad, as well as providers' experiences with Muslim patients. However, no studies evaluate…
BACKGROUND: The increased life expectancy of persons with profound intellectual and multiple disabilities (PIMD) raises questions regarding the medical decisions related to life and death, made on their behalf during their later lives. However,…
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…
Context: Children with cancer and cardiac disease suffer with high symptom burden at end of life (EOL). Little is known about the EOL experience for children with other complex chronic conditions (CCCs). Objective(s): To evaluate symptoms and…
Perinatal Palliative Care is a model of care designed to prevent and treat the physical, spiritual, emotional, and social needs of fetuses and newborn infants with life-threatening or life-limiting conditions. The care extends to the infant's family.…
BACKGROUND: Nurses who work with very unwell or dying children may experience intense sorrow and distress in response to loss, which can take an emotional toll on them, potentially affecting care provision. AIM: This study aimed to explore the…
OBJECTIVES: To offer an interpretation of bereaved parents' evaluations of communication with healthcare practitioners (HCPs) surrounding the death of a child. DESIGN: Interpretative qualitative study employing thematic and linguistic analyses of…
BACKGROUND: In case of extreme premature delivery at 24 weeks of gestation, both early intensive care and palliative comfort care for the neonate are considered treatment options. Prenatal counseling, preferably using shared decision making, is…
AIM: A follow-up conversation with bereaved parents is a relatively well-established intervention in paediatric clinical practice. Yet, the content and value of these conversations remain unclear. This review aims to provide insight into the content…
INTRODUCTION: Simulations, which represent reality, are effective in pediatric healthcare communication skills education and training. Parents are increasingly engaged in simulation development, particularly for authentic character development, to…
The purpose of this study was to explore parents' and health care professionals' perception of parents' experiences in making decisions between acute and palliative therapies along the trajectory of their child's life-limiting condition. An…
AIM: To investigate the main factors which facilitate or hinder end-of-life decision-making (EoLDM) in neonates and children. METHODS: A qualitative inductive, thematic analysis was performed of interviews with a total of 73 parents and 71…
Background: Caring for dying patients can result in burnout, stress, and emotional trauma for some physicians,1,2 particularly among trainees. Research is lacking that focuses on the emotional impact and coping techniques utilized by novice and…
Objective: To conduct a social network analysis (SNA) of patient-volunteer networks and assess the impact of patient characteristics on network measures. Background(s): Volunteers play a critical role in providing peer support to adolescent and young…
BACKGROUND: End-of-Life care and experiencing death of infants, children, and teenagers remain one of the most difficult and traumatic events for nurses and nursing students, potentially leading to personal and professional distress. Although efforts…
We report the development and assessment of a novel coding framework in the context of research into neonatal end-of-life decision making conversations. Data comprised 27 formal conversations between doctors and parents of critically ill babies,…
Context: Children and young people with life-limiting or life-threatening conditions and their families are potentially vulnerable during COVID-19 lockdowns due to pre-existing high clinical support needs and social participation limitations.…
Aim: Multidrug-resistant organisms (MDRO) deserve special attention in health-care facilities for children with life-limiting conditions because these children have an increased risk for colonisation. To avoid nosocomial transmissions to other…
BACKGROUND: Children with life-limiting illnesses are living longer. They have complex care needs and require specialised knowledge and skills, yet paediatric palliative care is still at its infancy in most settings worldwide. AIMS: To describe the…
Despite advances in medicine, some children will always die; a decline in pediatric intensive care unit (PICU) mortality to zero will never be achieved. The mortality decline is correspondingly asymptotic, yet we remain preoccupied with mortality…
Background: Medicaid is the most common of health care benefits for children at end of life. Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) presents a complex policy scenario for children enrolled in the Medicaid hospice benefit, and…
While social workers are a well-established, part of the pediatric palliative care team, this manuscript presents the first published definition of the core competencies of a pediatric palliative care social worker. National experts in the field,…
Pediatric palliative care is aimed at pain and symptom management, reducing hospitalization, promoting psychosocial care, and improving quality of life for children with serious illness. As a professional caregiver, nurses play an essential role in…
