Elena Iarskaia-Smirnova and Mikhail Korzh took part in the Public presentation of the research results
On April 29, 2025, the Public Chamber of the Russian Federation hosted a public presentation of the results of a study devoted to parental perception of the implementation of an ethical information protocol when a child is suspected or diagnosed with a disabling diagnosis. The event was attended by the head of the laboratory Elena Iarskaia-Smirnova and research intern Mikhail Korzh.
The meeting was moderated by Alina Sokhatskaya, head of the strategic program of the Commissioner for Children's Rights under the President of the Russian Federation "Support through life". The study was implemented in partnership between the Office of the Commissioner for Children's Rights, ILSIR HSE University, working group "Diagnosis Notification Protocol", the Center for Curative Pedagogics "Special Childhood" and the regional public organization of parents of disabled children "The Road of Good" (Kirov Region).
Elena Iarskaia-Smirnova pointed out three turning points in this study. Firstly, the parental optimism scale, which was decided used for analytical purposes instead of the approaches to studying stress and trauma that are quite common in the literature. Secondly, the negative relationship between the level of education and the level of optimism: it would seem that this could threaten stigmatization for parents with higher cultural capital, but in fact, it means that reflexivity and awareness increase concerns of the actors. Thirdly, as the literature analysis shows, it is awareness that can increase optimism, but only in conjunction with an action plan. This is what should become a guideline for both professionals and strategic decisions in the field of managing systemic support for families.
Mikhail Korzh emphasized the importance of parents' social capital for the formation of a sustainable and proactive position in overcoming a crisis situation. In addition, during the presentation, differences in the communication styles of medical workers with families were identified depending on the nature of the child's suspected or established diagnosis. Based on the findings, a recommendation was put forward to adapt methodological materials for doctors taking these differences into account. As Mikhail Korzh noted, many recommendations already today create a basis for changes for the better, but identifying hidden barriers that can be recorded in the course of further research is of particular importance.
Representatives of the healthcare system, relevant ministries, as well as public and non-profit organizations took part in the discussion. Participants emphasized the importance of building an effective system for routing parents to specialized support and support services. Special attention was paid to the need comprehensive training of medical specialists at all stages of interaction with families. It was noted that improving the model of communicating a diagnosis is only possible in close cooperation between the professional community, researchers and practitioners.
Research Assistant
Elena R. Iarskaia-Smirnova
Laboratory Head