Społeczne piętno u dzieci z epilepsją: postrzegane przez dziecko jako czynnik wpływający na doświadczanie wstydu przez rodziców
Modelling stigma in paediatric epilepsy: Child stigma as a predictor of parental stigma
W skrócie
Badanie wykazało, że zarówno dzieci z epilepsją, jak i ich rodzice odczuwają wysokie poczucie społecznego piętna i wstydu związanego z chorobą. Istnieje silny związek między tym, jak dzieci postrzegają swoje chorobie, a uczuciami rodziców - jeśli dziecko czuje się stygmatyzowane, rodzice również odczuwają większy wstyd i lęk. Naukowcy podkreślają, że pielęgniarki powinny regularnie rozmawiać z dziedziami i rodzinami o tych uczuciach oraz pomagać im radzić sobie z negatywnymi emocjami związanymi z epilepsją.
Oryginalny abstract (angielski)
OBJECTIVE: This study was conducted to determine the perceptions of stigma among children diagnosed with epilepsy and their parents, to examine the relationship between them, and to identify factors associated with children's perceived stigma. METHODS: This descriptive and exploratory study was conducted with children (n=108) diagnosed with epilepsy and their parents (n=108). Data were collected using the Personal Information Form, the Child Stigma Scale (CSS), and the Parent Stigma Scale (PSS). Descriptive statistics, correlation analysis, multiple linear regression analysis, and structural equation modeling were used to analyze the data. RESULTS: The mean CSS score was 2.84 ± 0.66, while the mean PSS score was 2.85 ± 0.75. Both children and parents reported relatively high levels of perceived stigma. A strong and significant positive correlation was found between CSS and PSS scores (r=0.910; p<0.001). In the structural equation model (SEM), children's perceived stigma was positively associated with parental stigma (β=0.918, p<0.001), with the model accounting for 84.4% of the variance in parental stigma (R2=0.844). Within the specified model, longer disease duration and higher maternal age were associated with lower CSS scores, whereas higher paternal age was associated with higher CSS scores. Multiple linear regression analysis showed that feeling ashamed after a seizure, fear of being seen by others during a seizure, and feelings of shame and worthlessness were significantly associated with children's perceived stigma. CONCLUSION: Children with epilepsy and their parents reported relatively high levels of perceived stigma. The strong association between CSS and PSS scores suggests that stigma in epilepsy is experienced by both children and their parents and may extend beyond the individual to the family context. Pediatric nurses should regularly assess stigma, identify psychosocial needs, and develop family-centered educational interventions for children with epilepsy and their families.