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

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

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.