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

Marine Cacioppo, Sandra Bouvier, Rodolphe Bailly, Laetitia Houx, Mathieu Lempereur, Johanne Mensah-Gourmel, Christèle Kandalaft, Roxane Varengue, Alain Chatelin, Jacky Vagnoni, Carole Vuillerot, Vincent Gautheron, Mickael Dinomais, Elea Dheilly, Sylvain Brochard, Christelle Pons, ECHO Group, Marine Cacioppo, Sandra Bouvier, Rodolphe Bailly, Laetitia Houx, Mathieu Lempereur, Johanne Mensah-Gourmel, Christèle Kandalaft, Roxane Varengue, Alain Chatelin, Jacky Vagnoni, Carole Vuillerot, Vincent Gautheron, Mickael Dinomais, Elea Dheilly, Sylvain Brochard, Christelle Pons, ECHO Group

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.

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

Copyright © 2020 Elsevier Masson SAS. All rights reserved.

Figures

Fig. 1
Fig. 1
Flow of participants in the study. ECHO, Enfant Confinement Handicap besOins.
Fig. 2
Fig. 2
Coordination of rehabilitation for children with disabilities during the COVID-19 lockdown and during easing of the lockdown. A proposition for regular evaluation of the “benefit/risk” to the individual during the pandemic situation to obtain a balance between the risk of the spread of the infection, and overall health, activity and participation goals for the child as well as providing support for the family and carers. The assessment may be initiated by the rehabilitation professional/doctor, the individual or the family. The aim is for care to be coordinated between all those concerned and based on co-determined goals in the interest of the individual. The action plan may be graduated according to the individual's needs, from telephone or video contact with the family to face-to-face treatment at home.

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Source: PubMed

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