The COVID-19 pandemic has in many parts of the world made it necessary to impose strict restrictions to reduce the spread of the disease and to avoid overwhelming healthcare services. These restrictions and the concerns regarding the COVID-19 illness have had an immense impact on individuals with a childhood disability and their families, and on the professionals working with them.

In order to gain insight into the impact of the COVID-19 pandemic on children with disabilities, their families and service providers/professionals across Europe, EACD performed an online survey among 1663 professionals working in the area of childhood-onset disability, and an online survey among 1790 families with one or more individual(s) with a childhood-onset disability in April–May 2020.

The survey aimed to better understand how to support individuals with a childhood disability, not only during future pandemics or serious global events, but also during their everyday lives, by being better prepared to provide the best possible care and support as society recovers.

To reduce the spread of COVID-19 and ‘flatten the curve’ to avoid overwhelming healthcare services, many restrictions and measures have been implemented by most European countries. They include among recommendations on the practice of other isolation and the practice of social distancing. However, unintentionally these measures and restrictions reduced the availability and access to health care services and treatments provided to people with a childhood disability.

70% of the families reported a reduction in the amount of treatment/therapy received during the period March-May 2020. 49% even reported that the individual with a childhood-onset disability did not receive any treatment/therapy at all in this period.

The COVID-19 crisis has led to an extreme burden being placed upon the (family) caregivers, in which 69% of the families reported the burden being placed upon them to be very high in the period March-May 2020. 40% even scored it as extremely high. On top of that, 51% of the families reported to have experienced a financial impact due to the COVID-19 crisis.

Taking this altogether, there are clear indications that the COVID-19 crisis is having an enormous impact on the mental health of individuals with a childhood-onset disability and their families. 62% of the families reported increased levels of stress and anxiety during the COVID-19 crisis, and 77% of the professionals reported to have noticed a mental health impact on individuals with a childhood-onset disability/disorder due to the COVID-19 crisis.

In-depth analyses of the surveys responses are currently being performed to further increase our insights on the experiences of families and professionals, to better understand how to provide the best possible care to people with a childhood disability in these difficult times.

Interested in more detailed information about the initial outcomes of the EACD COVID-19 Surveys? Please click here to download our Initial Report.

Other survey initiatives at national level across Europe:

Netherlands (Dutch Academy of Childhood Disability):

Alsem MW, Engelbert RHH, Knoester H, Buizer AI. (2020). Revalidatieaspecten van COVID-19 bij kinderen: kinderspel? Nederlands Tijdschrift voor Revalidatiegeneeskunde. Juni 2020

Alsem MW, Berkhout JJ, Buizer AI. (2020) Letter to the Editor: Therapy needs and possibilities in paediatric rehabilitation during the COVID‐19 lockdown in the Netherlands. Child: care, health and development. DOI: 10.1111/cch.12797

COVID-19 pandemie voor kinderen met zorgbehoeften en hun gezinnen: Geen kinderspel!

France (Enquête ECHO)

This survey was developed and is supported by BEaCHILD, FRISBEE, R4P, MPR CHU-Les Capucins-Angers , SFERHE, SOFMER, la Fondation Paralysie Cérébrale, l’IFRH and AFM-Telethon,  Institut cerebral motricité-formation-et-documentation , FFAIMC, FIRAH https://enqueteecho.fr/solutions/

Cacioppo M, Bouvier S, Bailly R, et al. Emerging health challenges for children with physical disabilities and their parents during the COVID-19 pandemic: The ECHO French survey [published online ahead of print, 2020 Aug 18]. Ann Phys Rehabil Med. 2020;S1877-0657(20)30157-3. doi:10.1016/j.rehab.2020.08.001.