Experience of Parents of Children with Genetically Determined Leukoencephalopathies Regarding the Adapted Health Care Services During the COVID-19 Pandemic - Archive ouverte HAL
Article Dans Une Revue Journal of Child Neurology Année : 2022

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

Pouneh Amir Yazdani
Marie-Lou St-Jean
  • Fonction : Auteur
Sara Matovic
  • Fonction : Auteur
Aaron Spahr
Luan Tran
  • Fonction : Auteur
Renée-Myriam Boucher
  • Fonction : Auteur
Chantal Poulin
  • Fonction : Auteur
Bradley Osterman
  • Fonction : Auteur
Myriam Srour
  • Fonction : Auteur
Bernard Rosenblatt
  • Fonction : Auteur
Sébastien Chenier
  • Fonction : Auteur
Jean-Francois Soucy
  • Fonction : Auteur
Anne-Marie Laberge
  • Fonction : Auteur
Nancy Braverman
  • Fonction : Auteur
Maria Daniela D’agostino
  • Fonction : Auteur
Cam-Tu Emilie Nguyen
  • Fonction : Auteur
Maxime Morsa
Geneviève Bernard
  • Fonction : Auteur

Résumé

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.

Dates et versions

hal-03612082 , version 1 (17-03-2022)

Identifiants

Citer

Pouneh Amir Yazdani, Marie-Lou St-Jean, Sara Matovic, Aaron Spahr, Luan Tran, et al.. Experience of Parents of Children with Genetically Determined Leukoencephalopathies Regarding the Adapted Health Care Services During the COVID-19 Pandemic. Journal of Child Neurology, 2022, pp.088307382110653. ⟨10.1177/08830738211065317⟩. ⟨hal-03612082⟩
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