Experience of Parents of Children with Genetically Determined Leukoencephalopathies Regarding the Adapted Health Care Services During the COVID-19 Pandemic.
Amir Yazdani, Pouneh; St-Jean, Marie-Lou; Matovic, Saraet al.
2022 • In Journal of Child Neurology, 37 (4), p. 237 - 245
COVID-19 pandemic; pediatrics; quality of life; Pandemics; Parents; COVID-19; Telemedicine; Leukoencephalopathies; Pediatrics, Perinatology and Child Health; Qualitative Research
Abstract :
[en] Parents of children with genetically determined leukoencephalopathies play a major role in their children's health care. Because of the COVID-19 pandemic, many health care services were suspended, delayed or delivered remotely with telemedicine. We sought to explore the experience of parents of children with genetically determined leukoencephalopathies during the pandemic given the adapted health care services. We conducted semistructured interviews with 13 parents of 13 affected children. Three main themes were identified using thematic analysis: perceived impact of COVID-19 on health care services, benefits and challenges of telemedicine, and expectations of health care after the pandemic. Parents perceived a loss/delay in health care services while having a positive response to telemedicine. Parents wished telemedicine would remain in their care after the pandemic. This is the first study assessing the impact of COVID-19 on health care services in this population. Our results suggest that parents experience a higher level of stress owing to the shortage of services and the children's vulnerability.
Disciplines :
Public health, health care sciences & services
Author, co-author :
Amir Yazdani, Pouneh ; Child Health and Human Development Program, 242143Research Institute of the McGill University Health Center, Montréal, Québec, Canada ; Department of Neurology and Neurosurgery, 5620McGill University, Montréal, Québec Canada ; Department of Pediatrics, 5620McGill University, Montréal, Québec, Canada ; 4440Université Laval, Québec, Québec, Canada
St-Jean, Marie-Lou; Child Health and Human Development Program, 242143Research Institute of the McGill University Health Center, Montréal, Québec, Canada ; Department of Neurology and Neurosurgery, 5620McGill University, Montréal, Québec Canada ; Department of Pediatrics, 5620McGill University, Montréal, Québec, Canada ; 5622Université de Montréal, Montréal, Québec, Canada
Matovic, Sara; Child Health and Human Development Program, 242143Research Institute of the McGill University Health Center, Montréal, Québec, Canada ; Department of Neurology and Neurosurgery, 5620McGill University, Montréal, Québec Canada ; Department of Pediatrics, 5620McGill University, Montréal, Québec, Canada
Spahr, Aaron ; Child Health and Human Development Program, 242143Research Institute of the McGill University Health Center, Montréal, Québec, Canada ; Department of Neurology and Neurosurgery, 5620McGill University, Montréal, Québec Canada ; Department of Pediatrics, 5620McGill University, Montréal, Québec, Canada
Tran, Luan T; Child Health and Human Development Program, 242143Research Institute of the McGill University Health Center, Montréal, Québec, Canada ; Department of Neurology and Neurosurgery, 5620McGill University, Montréal, Québec Canada ; Department of Pediatrics, 5620McGill University, Montréal, Québec, Canada
Boucher, Renée-Myriam; Department of Pediatrics, Division of Pediatric Neurology, 36896Centre Hospitalier de l'Université Laval, Québec, Canada
Poulin, Chantal; Department of Neurology and Neurosurgery, 5620McGill University, Montréal, Québec Canada ; Department of Pediatrics, 5620McGill University, Montréal, Québec, Canada
Osterman, Bradley; Department of Neurology and Neurosurgery, 5620McGill University, Montréal, Québec Canada ; Department of Pediatrics, 5620McGill University, Montréal, Québec, Canada
Srour, Myriam; Child Health and Human Development Program, 242143Research Institute of the McGill University Health Center, Montréal, Québec, Canada ; Department of Neurology and Neurosurgery, 5620McGill University, Montréal, Québec Canada ; Department of Pediatrics, 5620McGill University, Montréal, Québec, Canada
Rosenblatt, Bernard; Department of Neurology and Neurosurgery, 5620McGill University, Montréal, Québec Canada ; Department of Pediatrics, 5620McGill University, Montréal, Québec, Canada
Chenier, Sébastien; Department of Medical Genetics, 142379University of Sherbrooke, Sherbrooke, Québec, Canada
Soucy, Jean-Francois; Department of Pediatrics, 5622Université de Montréal, Montréal, Québec, Canada ; Medical Genetics Division, 25461Centre Hospitalier Universitaire Sainte-Justine, Montréal, Québec, Canada
Laberge, Anne-Marie; Department of Pediatrics, 5622Université de Montréal, Montréal, Québec, Canada ; Medical Genetics Division, 25461Centre Hospitalier Universitaire Sainte-Justine, Montréal, Québec, Canada
Braverman, Nancy; Child Health and Human Development Program, 242143Research Institute of the McGill University Health Center, Montréal, Québec, Canada ; Department of Pediatrics, 5620McGill University, Montréal, Québec, Canada ; Department of Human Genetics, 5620McGill University, Montreal, Québec, Canada ; Division of Medical Genetics, 10040Montreal Children's Hospital, Montréal, Québec, Canada ; Department of Specialized Medicine, Division of Medical Genetics, 54473McGill University Health Centre, Montréal, Québec, Canada
D'Agostino, Maria Daniela; Department of Human Genetics, 5620McGill University, Montreal, Québec, Canada ; Department of Specialized Medicine, Division of Medical Genetics, 54473McGill University Health Centre, Montréal, Québec, Canada
Nguyen, Cam-Tu Emilie; Department of Neurosciences and Pediatrics, Division of Pediatric Neurology, 25461Centre Hospitalier Universitaire Sainte-Justine, Montréal, Québec, Canada
Morsa, Maxime ; Université de Liège - ULiège > Département de Psychologie > Recherche qualitative ; 5622Université de Montréal, Montréal, Québec, Canada ; 27097Sorbonne Paris Nord University, Laboratory of Health Education and Practice, Bobigny, France
Bernard, Geneviève; Child Health and Human Development Program, 242143Research Institute of the McGill University Health Center, Montréal, Québec, Canada ; Department of Neurology and Neurosurgery, 5620McGill University, Montréal, Québec Canada ; Department of Pediatrics, 5620McGill University, Montréal, Québec, Canada ; Department of Human Genetics, 5620McGill University, Montreal, Québec, Canada ; Department of Specialized Medicine, Division of Medical Genetics, 54473McGill University Health Centre, Montréal, Québec, Canada
Experience of Parents of Children with Genetically Determined Leukoencephalopathies Regarding the Adapted Health Care Services During the COVID-19 Pandemic.
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project was funded by the McGill University Health Center Department of Medicine, The Estate of Daphne Joan Townsend Dale, and the Montreal Children's Hospital Foundation. A. Spahr has received funding from the Desjardins Studentship in Child Health Research through the Research Institute of McGill University Health Centre, the Healthy Brains for Healthy Lives Graduate Student Fellowship, as well as a Graduate Excellence Award from the Integrated Program in Neuroscience at McGill University. G. Bernard has received the Clinical Research Scholar Junior 1 award from the Fonds de Recherche du Quebec–Santé (FRQS) (2012-2016), the New Investigator Salary Award from the Canadian Institutes of Health Research (2017-2022), and the Clinical Research Scholar Senior award from the FRQS (2022-2025).
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