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Perceptions of stigma of children with epilepsy and their parents and its effects on social life

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Abstract

Epilepsy is a common neurological disorder, one of the essential psychosocial problems of which is stigma, and affects people’s daily social lives in various ways. Stigmatization in epilepsy should be combated to ensure complete bio-psycho-social well-being in these individuals. This study aimed to define the relationship between stigmatization perceptions of children with epilepsy and their parents and the effect on social life. Children with epilepsy and their parents were included in this cross-sectional study. Data were collected using the Child and Parent Description Form, Social Life the Negative Impact Scale (SLNIS), the Child Stigma Scale (CSS), and the Parent Stigma Scale (PSS). The mean age of the children included in the study was 12.14 ± 2.71. It was determined that 9.8% of the children had a family history of epilepsy, nearly half (47.7%) had a seizure time of 6 months or less, and 44.5% had seizures twice a year or more. The mean total score of the scales was 27.98 ± 6.08 for CSS, 16.64 ± 5.02 for PSS, and 69.95 ± 7.07 for CIAS. There was a statistically significant positive correlation at the p < 0.05 level between the CSS (r = 0.144; p < 0.05) and PSS (r = 0.144; p < 0.05) scores and the SLNIS scores. There was a statistically significant positive correlation at p < 0.05 level between the CSS scores and the PSS scores (r = 0.648; p < 0.05). It has been determined that the perception of child and parent stigma affects each other. As the perception of stigma increases in children with epilepsy, the negative impact on social life increases.

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Data Availability

The datasets generated during and/or analysed during the current study are available from the corresponding author on reasonable request.

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Acknowledgements

The authors would like to thank all participated in the study.

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This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

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Correspondence to Fadime Ustuner Top.

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Approval of the study was received from the Human Research Ethics Committee of the university (Date: 06.02.2020// /No:09). Informed consent form was obtained from the participants before starting the interview.

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Ustuner Top, F., Cam, H.H. & Bora Güneş, N. Perceptions of stigma of children with epilepsy and their parents and its effects on social life. Curr Psychol 43, 62–71 (2024). https://doi.org/10.1007/s12144-023-04919-0

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  • DOI: https://doi.org/10.1007/s12144-023-04919-0

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