Abstract
Background
This study aims to explore how Russian society perceives children with cancer and their families to determine its potential as a tool for solving the social struggles of cancer-affected youth.
Methods
The study took place between 2019 and 2020 and involved 237 parents of cancer-affected children enrolled for inpatient treatment in 5 pediatric oncology clinics in the North Caucasus Federal District (Russia). The study exploits a specially designed questionnaire survey as its main research method.
Results
About half of the parents did not observe changes in their attitude towards their child following a cancer diagnosis, with women more frequently noting these changes (40% vs. 18%). Public sentiment diverges between poles of sympathy and alienation: 53% acknowledge the expression of sympathy, while 39% perceive a sense of alienation. This study underscores the imperative for adequate support for these families, encompassing both financial and social dimensions.
Conclusion
The present findings can be used to design cancer awareness and anti-stigma programs aimed at educating the general population about the early symptoms of cancer, where to receive health consultation services, how to talk with and act around cancer-affected children, and how to support such children and their families.
Impact
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Despite advances in modern medicine and multiple cases of pediatric cancer being successfully treated, stereotypes about the incurable nature of cancer still exist in many countries.
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The present findings can serve as a platform for the comparative study of cancer-related issues in other regions and countries.
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The results of this study can also be used to design cancer awareness and anti-stigma programs aimed at educating the general population about the early symptoms of cancer, where to receive health consultation services, how to talk with and act around cancer-affected children, and how to support such children and their families.
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Data availability
Data will be available on request.
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Funding
This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.
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All authors contributed to the study’s conception and design—conceptualization: A.R., M.G., K.S. and G.D. performed material preparation, data collection, and analysis. The first draft of the manuscript was written by N.P., N.V. and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.
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Ethical statement
All survey participants provided informed consent before enrollment in the study. The participating families were guaranteed anonymity and confidentiality. The study was conducted by international ethics standards and approved by the Ethical Committee of the Federal State Autonomous Educational Institution of Higher Education I.M. Sechenov First Moscow State Medical University of the Ministry of Health of the Russian Federation (Sechenov University) (Protocol No. 22–21, dated 02.02.2019).
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Reshetnikov, A., Gevandova, M., Prisyazhnaya, N. et al. Public perceptions of families affected by pediatric cancer and educational work in pediatric oncology. Pediatr Res (2024). https://doi.org/10.1038/s41390-024-03179-3
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DOI: https://doi.org/10.1038/s41390-024-03179-3