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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…
AIM: To qualitatively assess the impact of disability-based discrimination in healthcare on the parents of children with medical complexity (CMC)., METHOD: In this qualitative study, we conducted in-depth, semi-structured interviews with the parents…
Duchenne muscular dystrophy (DMD) is a severe genetic neuromuscular disease that causes progressive loss of muscle function. As life expectancy in DMD has gradually increased to a current median of 21-39 years, the disease serves as an example of…
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: 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…
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…
Aim: The aim of this study was to compare patients referred to our retrieval service who were palliated before transfer, versus those transferred who were palliated within 7 days of birth. Methods: We conducted a retrospective chart review of infants…
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…
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…
This research was conducted as a descriptive study in order to examine the effects of the moral problems experienced by nurses working in intensive care clinics on their end of life care behaviors. The data were collected using the Moral Distress…
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…
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…
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: 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…
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…
The issue of medically-assisted dying in pediatric care, including euthanasia and deep sedation, is ethically complex. Despite its relevance, no research has applied Information Integration Theory to evaluate the acceptability of these practices in…
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…
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…
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…
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…
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…
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…
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: Having a brother or sister who has a chronic illness (lasting >6 months and requiring long-term care) or life-limiting condition (LLC; where cure is highly unlikely and the child is expected to die) has major impacts on siblings.…
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…
OBJECTIVES: Pediatric patients with life-limiting diagnoses frequently seek care in the pediatric emergency department (PED) during times of acute illness, or at end-of-life (EOL) . Although the population of patients with life-limiting diagnoses is…
OBJECTIVE: To better understand the strategies family caregivers of children with medical complexity (CMC) utilize to deal with the stress and challenges associated with caregiving. METHODS: We conducted a cross-sectional qualitative study among…
Objective: To uncover the values and preferences of the caregivers for children with medical complexity using the test case of surgical treatment decision-making for pediatric neuromuscular scoliosis that will inform the future development of a…
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: 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…
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…
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…
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…
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…
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…
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…
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…
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…
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)…
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…
