N. P. Kasatkina, N. V. Shumkova, N. G. Tokareva. Settlement Inequality and Social Exclusion of People with Epilepsy
UDК 316.344:616.853
DOI: https://doi.org/10.15507/2413-1407.115.029.202102.447-469
Introduction. Patients with epilepsy, due to the presence of the chronic disorder, belong to deprived social groups. The results of many studies confirm the discrimination of patients with epilepsy on various social parameters, such as the availability of high-quality medical care, education and jobs. The settlement factor aggravates the deprived situation of patients with epilepsy and significantly affects their socio-psychological well-being. Based on the materials of the study conducted, the article identifies the interconnection between the characteristics of the place of residence of a patient with epilepsy, indicators of social exclusion, and the level of emotional-volitional and cognitive disorders.
Materials and Methods. The data from a survey of 157 patients with epilepsy registered in neuropsychiatric dispensaries in Penza, Saransk, and Alatyr were used as materials for the study. The survey was conducted using the authors’ tools in May – December 2020 as formalized interviews. The results were processed using mathematical statistics methods in the SPSS software package.
Results. The survey data have confirmed the stigmatization and deprivation of patients with epilepsy: they are less likely to marry, have limited opportunities for vocational education, and are more often unemployed. The settlement factor manifests itself in the unequal availability of modern medical services and provision of drugs, inclusive educational programs and opportunities for occupational socialization. The performed cluster analysis of the data has made it possible to single out three groups of respondents that differ significantly in terms of indicators and the degree of social exclusion: “educational deprivation”, “exclusion in the labor market” and “coping with stigma”. Analysis of these categories regarding the settlement factor shows that the share of the most deprived groups is inversely related to the population of the cities under study.
Discussion and Conclusion. The authors have drawn the conclusions that the availability of social integration mechanisms reduces the likelihood of developing negative consequences of epilepsy, and the corresponding opportunities are largely due to the size of the city. The data obtained can be used to identify categories of patients with similar social problems, which will facilitate more targeted emotional and instrumental support for patients with epilepsy, with regard to the settlement factor.
Keywords: epilepsy, social exclusion, stigmatization, labor market, education system, region, settlement factor, deprivation
The authors declare that there is no conflict of interest.
Funding. The article was done with the financial support from the Russian Foundation for Basic Research as part of the scientific project “Social exclusion factors in the formation of mental disorders in patients with epilepsy” (No. 20-013-00529 А).
For citation: Kasatkina N.P., Shumkova N.V., Tokareva N.G. Settlement Inequality and Social Exclusion of People with Epilepsy. Regionology = Russian Journal of Regional Studies. 2021; 29(2):447-469. DOI: https://doi.org/10.15507/2413-1407.115.029.202102.447-469
REFERENCES
1. Bezukh S.M. Social Worker’s Competencies in Issues of the Support of People with Epilepsy. Uchenye zapiski Sankt-Peterburgskogo gosudarstvennogo instituta psikhologii i sotsialnoj raboty = Scientific Notes Journal of St. Petersburg State Institute of Psychology and Social Work. 2011; 16(2):15-18. Available at: https://notes.psysocwork.ru/fileadmin/user_upload/UZ_2011-2_03.pdf (accessed 28.01.2021). (In Russ., abstract in Eng.)
2. Borodkin F.M. Social Exclusions. Sotsiologicheskij zhurnal = Sociological Journal. 2000; (3-4):5-17. Available at: https://www.jour.fnisc.ru/index.php/socjour/article/view/644 (accessed 28.01.2021). (In Russ.)
3. Tombini M., Assenza G., Quintiliani L. Depressive Symptoms and Difficulties in Emotion Regulation in Adult Patients with Epilepsy: Association with Quality of Life and Stigma. Epilepsy & Behavior. 2020; 107. (In Eng.) DOI: https://doi.org/10.1016/j.yebeh.2020.107073
4. Jacoby A., Austin J.K. Social Stigma for Adults and Children with Epilepsy. Epilepsia. 2007; 48:6-9. (In Eng.) DOI: https://doi.org/10.1111/j.1528-1167.2007.01391.x
5. Mikhailov V.A. Topical Issues of Epileptology – Stigmatization, Quality of Life and Rehabilitation of Patients. Ehpilepsiya i paroksizmalnye sostoyaniya = Epilepsy and Paroxysmal Conditions. 2010; 2(3):39-44. Available at: https://www.epilepsia.su/jour/article/view/195/223 (accessed: 28.01.2021). (In Russ., abstract in Eng.)
6. Lee H.J. Choi E.K., Park H.B., Yang S.-H. Risk and Protective Factors Related to Stigma Among People with Epilepsy: An Integrative Review. Epilepsy & Behavior. 2020; 104. (In Eng.) DOI: https://doi.org/10.1016/j.yebeh.2020.106908
7. Dmitrenko D.V., Shnayder N.A., Govorina Yu.B., Muravieva A.V. Social Adaptation and Quality of Life in Reproductive-Aged Women with Epilepsy. Nevrologiya, nejropsikhiatriya, psikhosomatika = Neurology, Neuropsychiatry, Psychosomatics. 2015; 7(3):15-20. (In Russ., abstract in Eng.) DOI: https://doi.org/10.14412/2074-2711-2015-3-15-20
8. Ak P.D., Atakli D., Yuksel B., et al. Stigmatization and Social Impacts of Epilepsy in Turkey. Epilepsy & Behavior. 2015; 50:50-54. (In Eng.) DOI: https://doi.org/10.1016/j.yebeh.2015.05.014
9. Reilly C., Neville B.G.R. Academic Achievement in Children with Epilepsy: A Review. Epilepsy Research. 2011; 97(1–2):112-123. (In Eng.) DOI: https://doi.org/10.1016/j.eplepsyres.2011.07.017
10. Syvertsen M., Vasantharajan S., Moth T., et al. Predictors of High School Dropout, Anxiety, and Depression in Genetic Generalized Epilepsy. Epilepsia Open. 2020; 5(4):611-615. (In Eng.) DOI: https://doi.org/10.1002/epi4.12434
11. Dunn D.W., Johnson C.S., Perkins S.M. Academic Problems in Children with Seizures: Relationships with Neuropsychological Functioning and Family Variables during the 3 Years after Onset. Epilepsy & Behavior. 2010; 19(3):455-461. (In Eng.) DOI: https://doi.org/10.1016/j.yebeh.2010.08.023
12. Mendes T.P., Crespo C.A., Austin J.K. Family Cohesion, Stigma, and Quality of Life in Dyads of Children with Epilepsy and their Parents. Journal of Pediatric Psychology. 2017; 42(6):689-699. (In Eng.) DOI: https://doi.org/10.1093/jpepsy/jsw105
13. Grigoryeva I.A., Troitskaya L.A. Factors Influencing the Stigmatization of Patients with Epilepsy. Nevrologiya, nejropsikhiatriya, psikhosomatika = Neurology, Neuropsychiatry, Psychosomatics. 2015; 7(1S):10-14. (In Russ., abstract in Eng.) DOI: https://doi.org/10.14412/2074-2711-2015-1S-10-14
14. Ismail H., Wright J., Rhodes P. South Asians and Epilepsy: Exploring Health Experiences, Needs and Beliefs of Communities in the North of England. Seizure. 2005; 14(7):497-503. (In Eng.) DOI: https://doi.org/10.1016/j.seizure.2005.08.006
15. Njamnshi A.K., Zoung-Kanyi Bissek A.-C., Yepnjio F.N., et al. A Community Survey of Knowledge, Perceptions, and Practice with Respect to Epilepsy among Traditional Healers in the Batibo Health District, Cameroon. Epilepsy Behavior. 2010; 17(1):95-102. (In Eng.) DOI: https://doi.org/10.1016/j.yebeh.2009.10.018
16. Giuliano L. Cicero C.E., Padilla S., et al. Knowledge, Stigma, and Quality of Life in Epilepsy: Results before and after a Community-Based Epilepsy Awareness Program in Rural Bolivia. Epilepsy & Behavior. 2019; 92:90-97. (In Eng.) DOI: https://doi.org/10.1016/j.yebeh.2018.11.036
17. Parfenova E.V., Rider F.K., Gersamia A.G. Sociocultural Aspects and Different Types of Stigmatization in Epilepsy. Neurology, Neuropsychiatry, Psychosomatics. 2018; 10(1S):89-95. (In Russ., abstract in Eng.) DOI: https://doi.org/10.14412/2074-2711-2018-1S-89-95
18. Thomas S.V., Nair A. Confronting the Stigma of Epilepsy. Annals of Indian Academy of Neurology. 2011; 14(3):158-163. (In Eng.) DOI: https://doi.org/10.4103/0972-2327.85873
19. Herodes M., Õun A., Haldr S. Epilepsy in Estonia: A Quality‐of‐Life Study. Epilepsia. 2001; 42(8):1061-1073. (In Eng.) DOI: https://doi.org/10.1046/j.1528-1157.2001.0420081061.x
20. Beran R.G., Devereaux J.A., Buchanan D. Some Legal Aspects of Epilepsy. Epilepsy & Behavior. 2020; 111. (In Eng.) DOI: https://doi.org/10.1016/j.yebeh.2020.107244
21. Baker G.A. The Psychosocial Burden of Epilepsy. Epilepsia. 2002; 43(6):26-30. (In Eng.) DOI: https://doi.org/10.1046/j.1528-1157.43.s.6.12.x
22. Steer S., Pickrell W.O., Kerr M.P., Thomas R.H. Epilepsy Prevalence and Socioeconomic Deprivation in England. Epilepsia. 2014; 55(10):1634-1641. (In Eng.) DOI: https://doi.org/10.1111/epi.12763
23. Vaughan K.A., Lopez Ramos C., Buch V.P., et al. An Estimation of Global Volume of Surgically Treatable Epilepsy Based on a Systematic Review and Meta-Analysis of Epilepsy. Journal of Neurosurgery. 2018; 130(4):1127-1141. (In Eng.) DOI: https://doi.org/10.3171/2018.3.JNS171722
24. Magnusson C., Zelano J. High‐Resolution Mapping of Epilepsy Prevalence, Ambulance use, and Socioeconomic Deprivation in an Urban Area of Sweden. Epilepsia. 2019; 60(10):2060-2067. (In Eng.) DOI: https://doi.org/10.1111/epi.16339
Submitted 23.12.2020; approved after reviewing 10.02.2021; accepted for publication 19.02.2021.
About the authors:
Natalya P. Kasatkina, Leading Research Officer, Scientific Center for Social and Economic Monitoring (39a B. Khmelnitskogo St., Saransk 430005, Russian Federation); Associate Professor, Department of Sociology, National Research Mordovia State University (68/1 Bolshevistskaya St., Saransk 430005, Russian Federation), Cand. Sci. (Sociology), ORCID: https://orcid.org/0000-0002-0940-2087, kasatkina-rri@mail.ru
Natalya V. Shumkova, Associate Professor, Department of Sociology, National Research Mordovia State University (68/1 Bolshevistskaya St., Saransk 430005, Russian Federation), Cand. Sci. (Sociology), ORCID: https://orcid.org/0000-0002-2330-0028, niiregion@mail.ru
Natalya G. Tokareva, Associate Professor, Department of Nervous System Diseases and Psychiatry, National Research Mordovia State University (68/1 Bolshevistskaya St., Saransk 430005, Russian Federation), Cand. Sci. (Medicine), ORCID: https://orcid.org/0000-0002-2974-8149, tokareva-1@mail.ru
Contribution of the authors:
N. P. Kasatkina – elaboration of the research methodology; analysis of the literature on the research problem; writing the text of the article.
N. V. Shumkova – primary interpretation of statistical data; analysis of the literature on the research problem; writing the text of the article.
N. G. Tokareva – collection and processing of data; critical analysis and revision of the text of the article.
The authors have read and approved the final version of the manuscript.
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