‘To reveal or to conceal’- Disclosure strategies in parents of children with epilepsy in India

Lachake, Aishwarya V.; Desai, Nayan; Udani, Vrajesh

doi:10.1016/j.seizure.2021.07.026

Cited by 5 publications

(3 citation statements)

References 39 publications

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“… 39 , 40 In other research, parents have acknowledged that disclosure can promote greater social acceptance and safety. 41 In one longitudinal study, both parent and YWE stigma decreased 2 years post-diagnosis regardless of seizure frequency. 42 These findings suggest that for some families, perceived stigma may decrease as they adjust to their child’s epilepsy diagnosis.…”

Section: Discussionmentioning

confidence: 98%

“…For instance, in a study involving 16 European countries, 23% of the parents concealed their child’s epilepsy diagnosis, 61 whereas in a more recent study conducted in India, over 92% of the parents reported disclosing their child’s epilepsy diagnosis to extended family members and teachers. 41 Cultural beliefs related to epilepsy are also apparent in schools. For instance, 40% of the teachers in Ethiopia felt YWE had lower intelligence, 28% felt YWE experienced behavioral issues, and 15% preferred YWE to be in special education rather than mainstream classes.…”

Section: Discussionmentioning

confidence: 99%

“…Age at onset (M): 9 years Family history of epilepsy: their diagnoses had more negative attitudes towards epilepsy Perceived Stigma: mean CATIS score41.37 Disclosure: YWE disclosure associated with better HRQoL and positive family epilepsy-Age: 8-18 years P1 & P2: Sex: 60.6% and 53% female Race/Ethnicity: NR SES: NR Seizure type: generalized, focal (P1 & P2), 66.7% multiple types (P1) Time since diagnosis (M): 3.75-4.15 years Age at onset (M): 7.33-9.04 years Family history of epilepsy: 36.4% (P1) AED type: 54.Mixed-Methods Measures: Semi-structured interviews; Child Stigma Scale; EDS-Child YWE with higher perceived stigma more likely to conceal their illness from other's outside of family Perceived Stigma: YWE generally reported neutral levels of perceived stigma; YWE perceived stigma positively correlated with parent perceived stigma; Manifestations: anticipate stigmatization by others. Facilitators: history of enacted stigma, activity restrictions, parental stigmacoaching Disclosure: YWE concealment of their illness from others external to family associated with negative family epilepsy-related communication and Qualitative Measure: Semi-structured Interview Perceived stigma identified as a barrier to disclosure Perceived Stigma: Manifestations: anticipate differential treatment, negative perceptions and enacted stigma by others; perceived burden to others; negative self-perceptions.…”

mentioning

confidence: 99%

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Self-Disclosure Patterns Among Children and Youth with Epilepsy: Impact of Perceived-Stigma

Clifford¹,

Brothers²,

Lang³

2023

AHMT

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This review aimed to synthesize the minimal existing literature on the impact of perceived stigma on self-disclosure patterns among children and youth with epilepsy (YWE). Initial literature searches were conducted in PsycInfo, Scopus, Web of Science, and PubMed using search terms focused on epilepsy, pediatrics, disclosure, and/or stigma. Articles were included if they were original human research articles published in peer-reviewed journals that were accessible in English through Cincinnati Children’s Hospital Medical Center Pratt Library and fit study aims. Thirteen articles, which primarily used qualitative self-report methodologies, fit the study’s inclusion criteria. YWE report greater perceived stigma and lower illness disclosure compared to youth with other chronic health conditions. Across studies, perceived stigma was consistently identified as a barrier to YWE disclosing their epilepsy diagnosis. Consequences of perceived stigma included lower self-esteem, poorer perceived competency, lack of self-confidence, social withdrawal, and lower quality of life. YWE’s reluctance to disclose epilepsy was associated with worry about differential treatment, negative impact on close relationships, negative impact on others’ perceptions, and negative self-perceptions. While WHO and ILAE have identified stigma as contributing to higher disease burden in people with epilepsy and have highlighted the importance of prioritizing social policy focused on decreasing epilepsy-related stigma, progress has been incremental and much work remains. Future research is needed to understand socio-cultural factors perpetuating stigma among YWE in order to further develop, evaluate, and disseminate evidence-based clinical and education programming to combat epilepsy-related stigma.

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