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

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.

‘The psychosocial impact of childhood dementia on children and their parents: A systematic review’

“…We excluded one article that did not provide su cient detail of the study methodological rigour to be included in this review. These studies stemmed from 11 countries: the USA (33,35,37,40,(46)(47)(48)(49), Canada (32,42), Germany (43,47), Australia (50), Ireland (34), Japan (45), Poland (39), Spain (38), Sweden (36), the Netherlands (44), and the United Kingdom (41). Several studies ascertained data from international populations using online platforms (e.g.…”

“…Parents reported perpetuating obstacles managing their child's daily care, without access to rst-line non-pharmacological and behavioral therapies (e.g. speech therapy, physiotherapy) to reduce the acceleration of their child's developmental impairments and cognitive decline (32,38,39,43,48). In several studies, parents emphasized that the prolonged delays they experienced in accessing healthcare services and the perceived ampli cation of their child's progressive physical symptoms and neurocognitive regression compounded the intensity of their distress (32,36).…”

“…speech therapy, physiotherapy) to reduce the acceleration of their child's developmental impairments and cognitive decline (32,38,39,43,48). In several studies, parents emphasized that the prolonged delays they experienced in accessing healthcare services and the perceived ampli cation of their child's progressive physical symptoms and neurocognitive regression compounded the intensity of their distress (32,36). Profound developmental regression, life-threatening seizures, respiratory complications, motor impairment, sleep disturbances, and associated psychotic manifestations were repeatedly identi ed as conferring a high physical burden on parents (32,35,38,40,43,48).…”

“…To achieve equitable healthcare services to address their child's basic needs, parents underscored a pressing need for collective advocacy to generate awareness and recognition for the psychosocial support needs of children with dementia, and their parents in hospital and community settings (32,33,39,45,47). Parents considered that stage-speci c psychoeducation during different stages of their child's condition trajectory was critical to support emotional adaption to their child's progressive condition (36,41,42,45).…”

“…In several studies, parents emphasized that the prolonged delays they experienced in accessing healthcare services and the perceived ampli cation of their child's progressive physical symptoms and neurocognitive regression compounded the intensity of their distress (32,36). Profound developmental regression, life-threatening seizures, respiratory complications, motor impairment, sleep disturbances, and associated psychotic manifestations were repeatedly identi ed as conferring a high physical burden on parents (32,35,38,40,43,48). In addition, uncooperative behaviors including aggression, hyperactivity, agitation, orality, and a loss of communication skills were emotionally distressing for parents, who frequently reported a de cit of available supportive guidance to manage and cope with their child's challenging behaviors (43).…”