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Emerging health challenges for children with physical disabilities and their parents during the COVID-19 pandemic: The ECHO French survey - 18/05/21

Doi : 10.1016/j.rehab.2020.08.001 
Marine Cacioppo a, b, c, , Sandra Bouvier c, d, Rodolphe Bailly a, c, Laetitia Houx a, b, c, Mathieu Lempereur b, c, Johanne Mensah-Gourmel a, Christèle Kandalaft e, Roxane Varengue f, Alain Chatelin g, Jacky Vagnoni h, Carole Vuillerot i, j, Vincent Gautheron k, l, Mickael Dinomais m, n, Elea Dheilly a, c, Sylvain Brochard a, b, c, 1, Christelle Pons a, b, c, 1

ECHO Group2

  These authors contributed equally to this work.

a SSR pédiatrique, fondation Ildys, rue Alain-Colas, 29200 Brest, France 
b Service de médecine physique et de réadaptation, CHRU de Brest, Brest, France 
c Laboratoire de traitement de l’information médicale (LaTIM), inserm U1101, université Bretagne Occidentale, France 
d CHRU de Brest, Brest, France 
e Expert parent, Paris, France 
f Département de neurologie pédiatrique, CHU d’Angers, Angers, France 
g Fondation paralysie cérébrale, France 
h Fédération française des associations d’infirmes moteurs cérébraux, France 
i Service de médecine physique et de réadaptation pédiatrique, hôpital Mère-Enfant, hospices civils de Lyon, 69500 Bron, France 
j Institut neuromyogène CNRS UMR 5310 inserm U1217, Université de Lyon, Lyon, France 
k Service de médecine physique et de réadaptation pédiatrique, CHU de Saint-Étienne, Saint-Étienne, France 
l Université de Lyon, UJM Saint-Étienne, laboratoire interuniversitaire de biologie de la motricité, EA7424, 42023, Saint-Étienne, France 
m Service de médecine physique et de réadaptation, CHU d’Angers, Les-Capucins, Angers, France 
n Laboratoire Angevin de recherche en ingénierie des systèmes (LARIS) EA7315, université d’Angers, Angers, France 

Corresponding author at: SSR pédiatrique, fondation Ildys, rue Alain-Colas, 29200 Brest, France.SSR pédiatrique, fondation Ildysrue Alain-ColasBrest29200France

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Abstract

Background

The daily lives of children with physical disabilities and their families have been significantly affected by the COVID-19 pandemic. The children face health risks, especially mental, behavioral, social and physical risks.

Objective

This study aimed to identify potential healthcare issues relating to the wellbeing of disabled children, continuity of rehabilitation and medical care, and parental concerns during the COVID-19 lockdown.

Methods

The Enfant Confinement Handicap besOins (ECHO [child lockdown disability needs]) national survey was developed by a multidisciplinary group and disseminated in France from April 6, 2020 via email and social networks. This online survey was addressed to the parents of children with physical disabilities aged 0 to 18 years. It explored the experiences of children and their families during the lockdown. Information regarding children's wellbeing, rehabilitation and family organization was collected. The first 1000 eligible surveys were analyzed.

Results

The children (mean [SD] age 9.5 [4.8] years) mostly had cerebral palsy (42%) or neuromuscular diseases (11%). The lockdown had negative effects on morale (44% of children), behaviour (55% of children) and social interactions (55% no contact with other children). Overall, 44% of children stopped physical activities; 76% were educated at home; 22% maintained medical follow-up, and 48% and 27% continued physiotherapy and occupational therapy respectively. For more than 60% of children, parents performed the therapy. The main parental concern was rehabilitation (72%) and their main difficulty was the mental load (50%); parents complained of lack of help and support (60%).

Conclusions

This study highlighted substantial effects on the health of children with physical disabilities and loss of opportunity, with a massive interruption of medical follow-up and rehabilitation, during the lockdown. Regular assessment of the health benefit/risk is essential to support families and ensure continuity of care during a pandemic.

El texto completo de este artículo está disponible en PDF.

Keywords : COVID-19, Children with physical disabilities, Lockdown, Rehabilitation, Health risks


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