Perceived impact of lockdown on daily life in children with physical disabilities and their families during the COVID-19 pandemic.

BACKGROUND: The first lockdown during COVID-19 pandemic in France led to an abrupt change in children's daily lives. For children with physical disabilities and their families, activities were limited, access to healthcare and therapy was disrupted, and family organization was altered. The objective was to report the impact of the lockdown on daily life activities and well-being of children with physical disabilities as perceived by caregivers. METHODS: Two online national surveys were addressed to the parents of children with physical disabilities (ECHO survey: 6 April to 11 May 2020) and without disabilities (E-COPAIN survey: 24 April to 11 May 2020), confined at home during the lockdown. A lockdown impact score was calculated from difficulties related to children's well-being (morale, behaviour and social interaction) and daily life activities (schooling and physical activity) and compared between groups. Data on family environment, parental stress and concerns were collected. RESULTS: One thousand three hundred seventy-six children (9.45 ± 4.78 years, 54% girls) in ECHO survey and 367 children (7.3 ± 4.4 years, 48% girls) in E-COPAIN survey were included. A negative impact of lockdown was found on 81% of children with physical disabilities. Behavioural problems were significantly more frequent (59.5% vs. 47.4%, P < .005) and parental stress was higher (6.1 ± 3.33 vs. 5.3 ± 3.01, P = .005) in the ECHO group. Associated impairments (odds ratio [OR] = 1.45 [1.30-1.62], P < .001), parental stress (OR = 1.09 [1.06-1.12], P < .001) and continuation of rehabilitation (OR = 0.80 [0.72-0.89], P < .001) were determinants of the level of difficulty experienced. CONCLUSIONS: The lockdown had a considerable, negative impact on the daily life of children with disabilities and their families. Guiding policymakers with the essential daily life activities and the services to provide for children with physical disabilities would offer valuable insights to manage such a sanitary crisis and allow to identify the most vulnerable population.

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

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.