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. 2022 Mar;37(4):237-245.
doi: 10.1177/08830738211065317. Epub 2022 Jan 5.

Experience of Parents of Children with Genetically Determined Leukoencephalopathies Regarding the Adapted Health Care Services During the COVID-19 Pandemic

Pouneh Amir Yazdani  1   2   3   4 , Marie-Lou St-Jean  1   2   3   5 , Sara Matovic  1   2   3 , Aaron Spahr  1   2   3 , Luan T Tran  1   2   3 , Renée-Myriam Boucher  6 , Chantal Poulin  2   3 , Bradley Osterman  2   3 , Myriam Srour  1   2   3 , Bernard Rosenblatt  2   3 , Sébastien Chenier  7 , Jean-Francois Soucy  8   9 , Anne-Marie Laberge  8   9 , Nancy Braverman  1   3   10   11   12 , Maria Daniela D'Agostino  10   12 , Cam-Tu Emilie Nguyen  13 , Maxime Morsa  5   14 , Geneviève Bernard  1   2   3   10   12
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Experience of Parents of Children with Genetically Determined Leukoencephalopathies Regarding the Adapted Health Care Services During the COVID-19 Pandemic

Pouneh Amir Yazdani et al. J Child Neurol. 2022 Mar.

Abstract

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.

Keywords: COVID-19 pandemic; leukodystrophy; pediatrics; quality of life.

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Conflict of interest statement

Declaration of Conflicting Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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