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

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.

Evaluation of the effects of the COVID-19 pandemic on children with cerebral palsy, caregivers’ quality of life, and caregivers' fear of COVID-19 with telemedicine

“…A study in France showed that 77% of children’s medical consultations were cancelled or postponed during the lockdown. Moreover, only 48%, 27%, 32%, 31%, and 13% of children, respectively, continued their physiotherapy, occupational therapy, speech therapy, psychomotor therapy, and orthopedic sessions [ 3 ].…”

“…In March 2020, the World Health Organization (WHO) reported more than 118,000 cases of COVID-19 worldwide and declared the situation to be a pandemic [ 2 ]. Since there was no treatment method or vaccine available for COVID-19, preventive health campaigns such as social distancing were implemented in many countries [ 3 ]. The first case in Turkey was diagnosed on March 11, 2020 [ 4 ].…”

“…The sudden and unexpected lockdown changed the daily routine of the children with cerebral palsy (CP) and their caregivers in Turkey, as in the rest of the world [ 3 ]. Children with CP require physiotherapy regularly, repeated botulinum toxin injections, and if needed orthopedic surgery to maximize their developmental potential and minimize musculoskeletal deformity throughout their life [ 6 ].…”

A longitudinal study of mental health before and during COVID-19 lockdown in the French population

“…A large number of studies are now being carried out on the mental health consequences of the current COVID-19 epidemic. Many of them have compared the level of various mental health indicators measured in cross-sectional surveys conducted in the general population [2][3][4][5][6][7], pregnant women [8], children with physical disabilities [9], lesbian, gay, bisexual, and transgender adults [10], college students [11], and university students [12]. All of them show a clear degradation of mental health during lockdown, linked to the anxiety caused by the epidemic but also to poor living conditions.…”

The State of Children during Pandemic

“…Apart from this, children with disabilities face additional problems compared to normal children, such as. The study conducted by Cacioppo et al, (2020) found that lack of interaction due to lockdown has affected not just children with disabilities' self-esteem. However, it may cause them to restrict their communication ability.…”