Interaction between doctors and parents of children with special needs: results of the quantitative phase of the study

On June 11, 2024 the seminar "Interaction between doctors and parents of children with special needs: regulations and experience of informing" was held, which was attended by members of the ILSIR research project and experts from the Center for Therapeutic Pedagogy, a partner organization, and the Coordinating Council working group. The report of the laboratory staff and the subsequent discussion with experts were devoted to the first results of the quantitative stage of the research on the experience of implementing a protocol for reporting the diagnosis in the constituent subjects of the Russian Federation.

Photo by bady abbas on Unsplash

The seminar was attended by head of the ILSIR Elena Iarskaia-Smirnova, research assistants Mikhail Korzh and Alexey Weiser and expert colleagues Anna Bitova, chair of the board of the Center for therapeutic pedagogy "Special childhood" and Elena Lyanguzova, head of the Center for support of families with children with special needs "Dorogoyu dobra". The experts discussed the importance of implementing a protocol for communicating the diagnosis, possible difficulties and successful practices. Special attention was paid to the issue of routing parents to various organizations that support families with children with special needs. This process requires sufficient support infrastructure in the subjects of the Russian Federation and the inclusion of information about it in the list of organizations represented in the protocol.

Alexey Weiser and Mikhail Korzh presented the first results of the analysis of the data obtained during the quantitative phase of the study of the experience of informing parents of children with special needs. In the report, they mentioned the associations found between parents’ less pessimistic assessment of the future and adherence to practices specified in the protocol for communicating the diagnosis, the physician’s communication style to the patient's representative, and the provision of psychological support when reporting the child's diagnosis. Also, ILSIR staff shared findings regarding the relationship of parental optimism to sociodemographic characteristics of the respondent.

Anna Bitova, Elena Lyanguzova and Elena Iarskaia-Smirnova noted the importance of the findings and the need to further develop the study and clarify interpretations through the application of qualitative methodology. In the ensuing discussion, additional explanatory hypotheses were put forward. The seminar participants discussed the prospects for cooperation and solving future research tasks.