Seminar "Interaction between doctors and parents of children with special needs: regulations and experience of informing"
On June 11, 2024, at 1 pm (Moscow time), a seminar will be held on the results of the quantitative stage of the study of the Protocol for reporting a diagnosis in the subjects of the Russia.
The study is conducted by the ILSIR in conjunction with the Office of the Commissioner for Children's Rights under the President of the Russian Federation, NGO "Center for Curative Pedagogics", NGO "The Road of Goodness". The study is aimed at studying the process of obtaining information about the diagnosis of a child in the subjects of Russia.
The study included the experience of parents raising a child with genetic disorders, autism spectrum disorders, cerebral palsy, central nervous system damage, mental disorders, somatic diseases or other developmental disorders that are the basis for recognizing a person as disabled.
The implementation of the protocol correlates with a higher level of awareness among parents about public associations. The analysis shows that the implementation of the practices provided for by the protocol (even without its formal implementation) has a positive effect on the perception of parents: the level of optimism increases and the perceived severity of interaction with the doctor decreases.
Further research is needed to confirm the correlation between parents' level of education, their optimism and awareness of support organizations.
The report will be delivered by the head of the ILSIR, Professor Elena Iarskaia-Smirnova and research assistants Alexey Weiser and Mikhail Korzh, together with expert colleagues Anna Bitova from the NGO "Center for Curative Pedagogics" and Elena Lianguzova from the Office of the Commissioner for Children's Rights under the President of the Russian Federation.
The working language is Russian. To get a link to connect, you can contact by e-mail: nsbaysha@hse.ru
We invite everyone to participate!