The Research about the Response to the Pandemic COVID-19 Families with People with Special Needs
Our Laboratory has joined an international research project on how Families with Children with Special Needs are coping with the COVID-19 Pandemic.
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.)
More information about the project can be found on the website: www.specialneedscovid.org
We invite colleagues to participate in data collection and dissemination of information about the project.
The questionnaire in Russian is available at: https://fpse.qualtrics.com/jfe/form/SV_cACsPQNdJjoB6W9