Why do children and adolescents with epilepsy disclose or not disclose their condition to their friends?

Abstract

A diagnosis of epilepsy substantially influences the lives of affected children and adolescents, and concealing the diagnosis can generate additional stress. However, little is known about whether children and adolescents communicate their diagnosis to their friends. We performed a survey at two German university hospitals. Epilepsy patients aged 6–18 years were asked why they did or did not disclose their condition to their friends. A total of 101 patients (44 female, 57 male) were interviewed. Twenty-one (21%) informed all their friends about their epilepsy, 63 (62%) informed only certain friends, and 3 (3%) did not specify. Fourteen (14%) did not inform any friends. Their reasons for informing their friends were trust in friends (47/87; 54%); questions from friends, e.g., about missed school days (29/87; 33%); a wish for friends to be informed in case of an emergency (15/87; 17%); and a desire to live openly with the condition (8/87; 9%). The reasons for not informing friends were fear of stigmatization/shame (4/14; 29%), discouragement from parents (3/14; 21%), and a wish for confidentiality (3/14; 21%). Conclusion: Most children and adolescents inform their friends about their epilepsy. Fear of stigmatization is the main reason for not informing friends about this condition. What is Known• An epilepsy diagnosis is a life-changing event for affected children and adolescents.• Having to conceal the diagnosis can be very stressful. What is New• Most pediatric epilepsy patients informed at least some close friends about their diagnosis motivated by trust in friends; questions from friends, e.g., about missed school days; and a wish for friends to be informed in case of an emergency.• Fear of stigmatization/shame, discouragement from parents, and a wish for confidentiality were the motivations for concealing the disease.

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

“…Regarding targeted outcomes, in most studies perceived stigma and self-disclosure were not primary targets, but rather a result of incidental findings or sub themes of qualitative investigations. Of the 13 studies, 3 studies 20 , 21 , 26 specifically targeted both perceived stigma and disclosure management, 4 targeted disclosure only, 17 , 19 , 23 , 27 and in the 6 remaining studies, 16 , 18 , 22 , 24 , 25 , 28 perceived stigma and disclosure outcomes were based on incidental findings or sub-themes.…”

“…Prevalence rates for perceived stigma were discussed in 5 studies 16 , 18 , 22 , 23 , 26 and rates ranged from 20% 16 to 36%. 18 One study found that rates of perceived stigma were higher among YWE compared to youth with other chronic illnesses.…”

“…Unplanned disclosure often resulted from others witnessing a seizure (most commonly at school), 28 others overhearing discussions about YWE’s health information (eg, peer overhearing YWE’s parent discuss epilepsy with the teacher), peers asking YWE about school absences, exemptions for school activities 23 , 28 or medication taking. 24 Selective disclosure often occurred due to YWE wanting to preserve a sense of control by selecting what health information was shared and to whom 18 , 19 and to elicit social support and connectedness.…”

“… 24 Selective disclosure often occurred due to YWE wanting to preserve a sense of control by selecting what health information was shared and to whom 18 , 19 and to elicit social support and connectedness. 19 , 26 , 27 Preventative disclosure commonly occurred due to YWE’s desire for support in the event of a seizure 16–18 , 23 , 24 or a desire to prevent disruption to friendships or discrimination due to an unplanned disclosure. 16 , 18 , 27 …”

“…Protective factors: sense of control, greater epilepsy knowledge, normalization of medication treatment, participation in normative activities, peer acceptance Disclosure : Facilitators: knowing someone with epilepsy, desire for support during a seizure. Barriers: epilepsy too complex to explain Houston et al (2000) 22 UK Setting : Hospital N: 22 YWE Age : 5–10 years (chronological age for 13 and developmental age for 9) Sex : 40.9% female Race/Ethnicity : NR SES : NR Seizure type : generalized, focal Time since diagnosis : 1–13 years Age at onset (M): 6.1 years Family history of epilepsy : 6 family members AED type : 13.6% polytherapy, majority on monotherapy Compare illness knowledge and outcomes between youth with epilepsy, diabetes, asthma Design : Qualitative Measur e: Semi-structured interview Perceived stigma commonly reported barrier to disclosure Perceived Stigma : Higher perceived stigma in YWE compared to youth with asthma and diabetes Disclosure: ~18% of YWE disclosed diagnosis, knowing someone with epilepsy did not impact disclosure management Jeschke et al (2020) 23 Germany Setting : University neuropediatric hospitals N: 101 YWE Age : 6–18 years Sex : 44% female Race/Ethnicity : NR SES : NR Seizure type : generalized, focal, 40% other epilepsies with focal seizures Time since diagnosis : NR Age at onset : NR Family history of epilepsy : NR AED type : NR Explore YWE’s disclosure management to friends Design : Qualitative Measure : Structured Interview Fear of stigmatization a primary reason for concealing epilepsy diagnosis from friends Perceived Stigma : 29% expressed fear of stigmatization and/or shame; 36% anticipated uncomfortable peer response Disclosure : 86% disclosed to friends Facilitators: perceived trustworthy (54%), friend inquiries related to epilepsy (33%), desire for support during a seizure (17%), desire for openness (9%). Barriers: parent discouragement (21%), desire for confidentiality (21%) Lewis & Parsons (2008) 13 UK Setting : Community/School e-survey N: 44 YWE Age : 3–23 years Interview N: 22 YWE Age : 7–18 years e-survey and Interview Sex : 59% femal...…”