Information for researchers

Note: For the current study, the principal investigators (PIs) are, (in alphabetical order): Dr. Daniel Dukes, Professor Andrea Samson (both Swiss Distance University Institute, Switzerand) and Dr. Jo Van Herwegen (UCL, UK).

The principal goal of this project is to understand the reaction (fear, calm, serenity, apprehension, anxiety, etc.) towards, and coping strategies concerning the current COVID-19 epidemic of parents of offspring (children and adults) with special needs (SN) including Autism Spectrum Disorder, Williams Syndrome, Down Syndrome, ADHD, Williams Syndrome, Non-specified Intellectual Disability and other genetic disorders. In order to provide a comparison group, parents will be invited to answer similar questions for a typically developing sibling of their offspring with SN (should they have one). This study, carried out in the unique context of the COVID-19 epidemic, is part of an international collaboration with partners over 30 countries (see current list below) and will allow us to gain a deeper understanding of the specific capacities (limitations and strengths) of people with SN to cope with such an event. This anonymous survey should generate insights and hypotheses about the differences across types and age within types of SN in coping with a similar risk. It will not only contribute to a better understanding of the experiences and feelings of individuals with SN, but also of their parents, thus informing the design of future interventions to improve their quality of life. (While we had originally planned two surveys – one for carers/parents and one for the voices of young people and adults with special needs – this would have meant applying to a different ethics committee and would have taken much longer to process, since ‘individuals with special needs’ would be considered a vulnerable group. Given the time sensitive nature of this project, we chose to find out how COVID-19 was impacting today on the lives of individuals with special needs and their families, rather than wait.)

The study has been approved by the ethics committee of the Swiss Distance University Institute as of April 3, 2020 (Nr. 2020-03-00002).

The survey has been registered on OSF:

Van Herwegen, J., Dukes, D., & Samson, A. (2020, April 9). COVID19 Crisis Response Survey for families of Individuals with Special Needs.
Retrieved from DOI:10.17605/OSF.IO/5NKQ9

List of participating countries:

Australia, Austria, Belarus, Belgium, Canada, China, Czech Republic, Ecuador, France, Germany, Greece, India, Ireland, Italy, Kazakhstan, Kenya, Lithuania, Luxembourg, Mexico. Netherlands, New Zealand, Romania, Russia, Slovakia, Sweden, South Africa, Spain, Switzerland, UK, and USA.

You can follow updates of the survey on this page

The survey will be made available in the following languages in the next few days (with more to follow): Arabic, Chinese (simplified), Czech, Dutch, English, French, German, Italian, Romanian, Russian, Spanish, Swedish

If you are a researcher and would like to be part of this research project, for example, if you would like to translate the questionnaire into another language, please feel free to contact us:

List of collaborators:

Please click here

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Research data access

As of now, data will be collected by means of the online survey from as many individuals and fami...
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Data security

Researchers who request data need to check with their own ethical boards beforehand if it is nece...
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Affiliation Opportunities

While it is too late for researchers to join the data collection this time, we are continually lo...