MeSH: Canada
Palliative Care Training for Pediatric Hematology/Oncology Fellows: a Canadian Perspective
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Children with cancer experience suffering, particularly at the end of life. Pediatric hematology/oncology (PHO) fellows need dedicated palliative care (PC) training in order to adequately manage this suffering. Our objectives were to understand (1) the PC training needs of Canadian PHO fellows and (2) experiences in providing PC, from the perspectives of fellows and their training…
Parental experiences of the liminal period of a child’s fatal illness
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The article offers a description of parents’ experiences of their child’s ultimately fatal illness as it unfolds over the successive stages of medical treatment, in the context of the liminality theory. The parents (N = 23) were interviewed 1-4 years after their child’s death. The research method involved conducting narrative interviews with parents in order to obtain a…
Beyond technology, drips, and machines: Moral distress in PICU nurses caring for end-of-life patients
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Moral distress is an experience of profound moral compromise with deeply impactful and potentially long-term consequences to the individual. Critical care areas are fraught with ethical issues, and end-of-life care has been associated with numerous incidences of moral distress among nurses. One such area where the dichotomy of life and death seems to be at…
CHILD-BRIGHT READYorNot Brain-Based Disabilities Trial: protocol of a randomised controlled trial (RCT) investigating the effectiveness of a patient-facing e-health intervention designed to enhance healthcare transition readiness in youth
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Introduction Youth with brain-based disabilities (BBDs), as well as their parents/caregivers, often feel ill-prepared for the transfer from paediatric to adult healthcare services. To address this pressing issue, we developed the MyREADY TransitionTM BBD App, a patient-facing e-health intervention. The primary aim of this randomised controlled trial (RCT) was to determine whether the App will…
Genome Sequencing as a Diagnostic Test in Children With Unexplained Medical Complexity
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IMPORTANCE: Children with medical complexity (CMC) represent a growing population in the pediatric health care system, with high resource use and associated health care costs. A genetic diagnosis can inform prognosis, anticipatory care, management, and reproductive planning. Conventional genetic testing strategies for CMC are often costly, time consuming, and ultimately unsuccessful. OBJECTIVE: To evaluate the…