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Daily experiences of mothers caring for children with Prader-Willi syndrome (PWS) are largely unknown and unvoiced. Knowledge of PWS has generally focused on pathology of the disorder. This emphasis overlooks the challenging moments of everyday life…
BACKGROUND: Children with invasive mechanical ventilation (IMV) often live at home, but for safety, parents must be prepared to assume primary responsibility for all aspects of their child's medically complex care. Prior studies have described…
In this article, we investigate how mothers of disabled children in Norway experience the work-family conflict and its impact on their careers, highlighting the role of provision of health and welfare services. We use a qualitative multiple case…
BACKGROUND: Parents of children with neurodevelopmental disorders often experience heightened levels of parenting stress and diminished well-being. However, less is known about the well-being of parents whose children exhibit symptoms of…
In perinatal medicine, the number of babies with life-limiting or life-threatening conditions is increasing and the benefits of providing palliative care with a holistic, interdisciplinary approach are well documented. It can be particularly…
OBJECTIVES: While caring for seriously ill children is a rewarding experience, pediatric healthcare providers may experience sadness and emotional distress when their patient dies. These feelings, particularly when not addressed, can lead to negative…
Objective: This study was conducted to examine in detail the experiences regarding the care process of family members providing pediatric palliative care. Method: A qualitative research method was adopted for the study. The reason for choosing this…
Objectives: Pediatric patients with advanced heart disease (AHD) often receive high intensity medical care at the end of life (EOL). In this study, we aimed to determine whether receipt and timing of pediatric palliative care (PPC) consultation was…
OBJECTIVE: The objective of the scoping review was to explore the evidence and describe what is known about perinatal bereavement care guidelines provided within health care facilities prior to discharge. Additionally, the review sought to identify…
Background: Pediatric patients with advanced cardiac disease often receive high intensity medical care at the end of life (EOL). Specialized pediatric palliative care (PPC) has been shown to improve symptom management and EOL goal-concordant care,…
Context: Children are a uniquely vulnerable patient population with restricted abilities for self-advocacy and autonomy, risking infringement upon their dignity. Yet the concept of dignity in pediatrics remains underexplored relative to the adult…
Background: The Act on Life-Sustaining Treatment (LST) for patients at the end of life (the Korean LST Decision Act), implemented in the Republic of Korea in February 2018, has led to changes in the end-of-life decision-making (EOLDM) process in…
OBJECTIVE: To identify factors associated with the receipt, completion, and goals of palliative care birth plans during the prenatal period. DESIGN: Retrospective observational study of medical record data. SETTING: Midwestern U.S. quaternary…
Life-limiting conditions often cause children to be overlooked as participants in everyday activities. For parents child development should lead to independence in daily living activity. For parents of children who are disabled, independence is a…
Abstract: Background: Palliative care has recently become imperative in child care. Pediatric nurses need to boost their education in this area to be able to offer proper care for children with critical illnesses. Purpose: To determine the effect of…
Background: The role of pediatric palliative care (PPC) is well described in oncology, however, its involvement in children with congenital heart disease (CHD) is not well explored. Method(s): This prospective interventional study was conducted on…
OBJECTIVE: Genetic disorders are a major determinant of morbidity and mortality within neonatal intensive care units (NICUs). Studies have found genetic testing in critically ill infants may lead to changes in clinical decisions such as pursuing end…
Background: A large Midwestern hospital has no consistent process for prenatal integration of palliative care for parents carrying a fetus diagnosed with complex congenital heart disease. The palliative care team is typically consulted postnatally…
Background: Certified Child Life Specialists (CCLSs) provide developmentally appropriate psychosocial care to children to promote positive coping. However, little is known about the current professional landscape and opportunities for professional…
Objective: This systematic review and meta-synthesis aimed to explore the experiences of parents making end-of-life decisions in Neonatal Intensive Care Unit (NICU). Methods: We searched nine databases up to December 2023, including qualitative…
Background/objectives: Pediatric palliative care refers to active, holistic care that provides support not only for families but also for the physical, psychological, social, and spiritual needs of pediatric patients with severe life-threatening…
Context: Many general pediatrics residents lack sufficient opportunities to conduct difficult conversations with families, particularly about end-of-life care. Simulation learning is an effective means of practicing professional skills. A pediatric…
Pediatric neurodegenerative disorders (PNDs), such as juvenile neuronal ceroid lipofuscinosis (CLN3 disease, also called Batten disease) and juvenile Huntington disease, are devastating conditions that result in progressive neurological dysfunction…
Importance: Most youths receiving palliative care undergo many surgical interventions over their lifetimes. The intended purposes of interventions in the context of goals of care are not commonly articulated. Objective: To describe the goals and…
Objective: To describe nurses' beliefs and attitudes related to care during the end-of-life process and death in a neonatal intensive care unit. Method: Descriptive and qualitative study with nurses working in a neonatal intensive care unit who…
Introduction: Neonatal intensive care units (NICUs) emerge as one of the areas where palliative care is most needed. This study was conducted to examine the attitudes and compassion fatigue levels of NICUs nurses working in Şanlıurfa, where the…
This paper seeks to explore the current state of paediatric palliative care in Aotearoa New Zealand. The low priority afforded to paediatric palliative care for more than two decades has had a significant impact on service provision, education and…
Understanding the meaning of loss for racialized immigrant fathers and addressing their experiences in a culturally competent manner is important in an increasingly ethnoculturally diverse country like Canada. Culture, customs and rituals influence…
Background: Since 2017, terminally ill parents with dependent children under the age of 18 have been able to record an audiobook for their dependent children. This service allows them to narrate how they would like to be remembered in their voice.…
Background: To ensure high-quality pediatric palliative care (PPC) and enable healthcare professionals (HCPs) to provide person-centered care for the individual child with a life-limiting or life-threatening illness and their family, the Individual…
Aim: To characterise the feeding profile and care pathway for infants receiving prolonged high-flow nasal cannula (HFNC) respiratory support for management of a chronic condition at one facility from January to December 2021. Methods: Data regarding…
Background: Children and adolescents with Pompe disease (PD) face chronic and progressive myopathy requiring time-intensive enzyme replacement therapy (ERT). Little is known about their perspectives on the disease and its treatment. This study…
Introduction: Patients managed in the Pediatric Palliative Care Integral Unit (PPCIU) have serious neurological conditions that involve significant damage at central nervous system level. The movement disorder is a very common clinical problem and…
Aim: Complex care programmes for children with medically complex cerebral palsy (CP) exist; however, evidence for their impact is limited. This study (i) explored the impact of The Royal Children's Hospital Complex Care Hub (CCH) on hospital service…
BACKGROUND AND OBJECTIVES: Despite advances in treatment and outcomes for paediatric heart failure, both physical and psychosocial comorbidities remain notable among this patient population. We aimed to qualitatively describe the psychosocial…
Context: Racial disparities in health outcomes have historically impacted Black and Native American children with serious illness, yet little is known about how racism shapes the healthcare experiences of these families. To improve care experiences…
Background: Parents and healthcare professionals make decisions for neonates with life-threatening conditions (LTCs). Parents may be inadequately included. Limited studies have evaluated influential factors. We aimed to explore parental factors…
Background: Caregivers of children with complex chronic diseases (CCD) or life-limiting conditions (LLC) experience heightened strain. Understanding their concerns is essential for effective support, particularly in pediatric palliative care (PPC)…
The aim of this scoping review is to summarise the existing empirical evidence and produce an overview of the ways in which music therapy in paediatric palliative care is described in the literature, with a specific focus on hospital-at-home. It was…
Introduction: Hospice and Palliative Medicine (HPM) fellowship training provides education on caring for patients from early childhood through adulthood. Yet, there are few guidelines about how to teach these key components, and more specifically the…
