The COVID-19 Special Needs Coping Survey

This study examines how people with SN and their families across the world have been coping with the administrative, financial and social changes they have likely incurred due to the current pandemic. In particular, we are interested in the stresses that they have faced and the coping and emotion regulation strategies they have employed. By Special Needs, we mean people who need support with their condition which includes (but is not limited to) Autism Spectrum Disorder, ADHD, Down Syndrome, Intellectual Disability (not-otherwise specified), Williams Syndrome and other rare genetic diseases.

The goal is to find out what people with different SN have found particularly difficult and how different individuals, families, groups and governments have gone about dealing with and alleviating those difficulties. Comparing the different groups will allow further insight whether support plans during this crisis period need to be unique for each developmental disorder or whether they can be generalised. This research will build the much needed evidence base concerning our understanding of the effects of state-wide emergency crises and measures on the outcomes of children with neurodevelopmental disorders and how to alleviate them in the future.

About the Research

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 http://osf.io/5nkq9 DOI:10.17605/OSF.IO/5NKQ9