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

Figures & data

Table 1 Search Terms

Search Engine	Date of Search	Search Terms
PsycInfo	04/01/2022	[epilepsy OR seizures OR epileptic] AND [self disclosure OR disclosure] AND [pediatric* OR paediatric* OR child* OR youth* OR adolescent OR school age OR young adult OR teen* OR emerging adult] AND [stigma OR prejudice OR attitude OR discrimination]
Scopus	04/01/2022	[epilepsy OR epileptic* OR seizures] AND [disclosure OR inform OR shar*] AND [stigma OR discrimination] AND [pediatric* OR paediatric* OR child* OR youth* OR adolescent OR school age OR young adult OR teen* OR parent* OR famil*]
Web of Science	04/29/2022	[epilepsy OR epilepsies OR seizure disorder OR seizure or seizure condition] AND [adolescent OR teen OR child OR children OR young person OR youth OR young adult OR emerging adult OR pediatric OR paediatric] AND [self-disclosure OR inform OR tell OR notify OR disclosure OR share OR support OR social support OR peer support] AND [self-stigma OR stigma OR discrimination]
PubMed	05/12/2022	[epilepsy (mesh) OR seizures (mesh) OR epilepsy (text word) OR seizure disorder (text word) OR seizure condition (text word)] AND [self disclosure (mesh) OR self disclosure (text word) OR truth disclosure (mesh) OR truth disclosure (text word) OR inform (text word) OR tell (text word) OR notify (text word) OR share (text word) OR social discrimination (mesh)] OR ([social stigma (mesh) OR stigma (text word) or social discrimination (mesh)] OR [social support (mesh) OR social support (text word) OR peer support (text word)]) AND [child (mesh) OR child* (text word) OR adolescent (mesh) OR adolescn* (text word) OR youth* (text word) OR teen* (text word) OR juvenil* (text word) OR emerging adult (text word) OR pediatrics (mesh) OR pediatric* (text word) OR paediatric* (text word)]

Figure 1 Article identification, screening, and inclusion flow chart.

Table 2 Key Findings from Reviewed Studies Related to Perceived Stigma and Disclosure

Authors, (Year)	Sample	Epilepsy Characteristics	Aims, Design & Data Collection Methods	Relevant Findings
Country, Setting
Benson et al (2018)^Citation21 Ireland Setting: NR	N: 47 YWE Age: 8–18 years Sex: 53% female Race/Ethnicity: 97.9% White Irish SES: 36.1% parents college educated	Seizure type: generalized, focal Time since diagnosis (M): 4.2 years Age at onset (M): 9 years Family history of epilepsy: NR AED type: NR	Development & validation of EDS Design: Quantitative Measures: EDS-Youth; Child Attitude Towards Illness Scale (CATIS)	YWE who concealed their diagnoses had more negative attitudes towards epilepsy Perceived Stigma: mean CATIS score 41.37 Disclosure: YWE disclosure associated with better HRQoL and positive family epilepsy-related communication
Benson et al (2016)^Citation20 Ireland Setting: pediatric neurology unit and national epilepsy association	Phase I (P1): N: 33 YWE Age: 6–16 years Phase II (P2): N: 47 YWE 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: 54.4% polytherapy; 42.4% monotherapy; 9% refractory (P1)	Examine epilepsy-related perceived stigma, disclosure, family communication Design: 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 stigma-coaching Disclosure: YWE concealment of their illness from others external to family associated with negative family epilepsy-related communication and positively associated with parent perceived stigma and concealment
Benson et al (2015)^Citation19 Ireland Setting: University	N: 29 YWE Age: 6–16 years Sex: 58.6% female Race/Ethnicity: NR SES: NR	Seizure type: Generalized, focal, 65.6% multiple seizure types Time since diagnosis (M): 3.87 years Age at onset (M): 7.35 years Family history of epilepsy: 31% AED type: 55.2% polytherapy; 41.4% monotherapy; 10.2% refractory	Assess barriers to YWE disclosing outside of family Design: 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. Facilitators: history of enacted stigma, activity restrictions Disclosure: YWE use concealment and selective disclosure to prevent differential treatment and to maintain sense of control. Barriers: familial perception of epilepsy as private, invisibility of epilepsy, self and other’s misconceptions of epilepsy, epilepsy too complex to explain
Chew et al (2019)^Citation28 Singapore Setting: Hospital	N: 15 YWE Age: 13–16 years Sex: 46.6% female Race/Ethnicity: 66.6% identified as Chinese; 33.3% Malay SES: NR	Seizure type: NR Time since diagnosis: 1–13 years Age at onset: NR Family history of epilepsy: NR AED type: NR	Examine epilepsy on peer relations, autonomy, self-esteem Design: Qualitative Measure: Semi-structured interview	Perceived stigma identified as a barrier to disclosure Perceived Stigma: Manifestations: anticipation of other’s negative perceptions and reactions, negative self-perceptions. Protective factors: peer support, acceptance and inclusion; positive reappraisals of epilepsy-related restrictions; focus on strengths/abilities vs differences Disclosure: Most peers responded positively to disclosure Unintended disclosure (50% had a seizure at school), third party disclosure, peers questioning school absences and activity exemptions. Barriers: lack of skills to explain epilepsy. Facilitators: peers request for epilepsy education.
Eklund & Sivberg (2003)^Citation17 Sweden Setting: pediatric department at a University setting	N: 13 YWE Age: 13–19 years Sex: 77% female Race/Ethnicity: NR SES: NR	Seizure type: generalized, focal Time since diagnosis: 1–5 years (54%) Age at onset: NR Family history of epilepsy: NR AED type: NR	Describe YWE’s lived experiences and coping skills Design: Qualitative Measure: Semi-structured interviews	Perceived stigma identified as a barrier to disclosure Perceived Stigma: all reported feelings of differentness. Other manifestations: negative self-perceptions, perceived burden to others. Facilitators: lack of public awareness; parent stigma coaching. 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)^Citation22 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 Measure: 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)^Citation23 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)^Citation13 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% female Race/Ethnicity: 82% White British SES: NR	Seizure type: NR Time since diagnosis: NR Age at onset 43.2% under 5 years (e-survey; inconsistently reported for interviews) Family history of epilepsy: NR AED type: NR	Assess impact of epilepsy on academic and social functioning Design: Qualitative Measures: e-Survey; Semi-structured Interviews	Feelings of secrecy, stigma, and shame barriers to YWE disclosing to others Perceived Stigma: negative self-perceptions, perceived differentness, perceive epilepsy to be contagious. Disclosure: Most peers responded positively to disclosure. Facilitators: desire for support during a seizure and to prevent unintentional disclosure, maintain sense of control, disclosure encouraged by family, know others with epilepsy. Barriers: invisibility, epilepsy not discussed at home, lack of public epilepsy education
Moffat et al (2009)^Citation24 Scotland Setting: Hospital	N: 22 YWE Age: 7–12 years Sex: 50% female Race/Ethnicity: NR SES: NR	Seizure type: generalized, focal, 13.6% multiple seizure type Time since diagnosis: NR Age at diagnosis (M): 6.1 years Family history of epilepsy: NR AED type: 81% monotherapy and 9% polytherapy	HRQOL in YWE Design: Qualitative Measure: Semi-structured interview	Perceived stigma identified as a barrier to disclosure Perceived Stigma: negative self-perceptions; anticipation of other’s negative perceptions and reactions, perceived limitations due to epilepsy. Facilitators: enacted stigma, activity restrictions, epilepsy side effects Disclosure: All YWE reported telling their best friend. Facilitators: desire for support during seizure. Barriers: family encouraged secrecy, concern for third party disclosure
Ronen et al (1999)^Citation25 Canada Setting: Hospital	N: 29 YWE Age: 6–10 years Sex: 62.1% female Race/Ethnicity: NR SES: NR	Seizure type: generalized, focal, 10.3% multiple seizure types Time since diagnosis (M): 18.4 months Age at diagnosis (M): 5.3 years Family history of epilepsy: NR AED type: 86.2% monotherapy; 13.8% polytherapy	Examine attributes of HRQOL in YWE Design: Qualitative Measure: Unstructured interview	Perceived stigma a barrier to disclosure Perceived Stigma: negative self-perceptions, anticipate differential treatment and negative reactions by others. Facilitators: parent stigma coaching Disclosure: concealment due to perceived stigma
Sheridan et al (2016)^Citation27 Ireland Setting: University	N: 8 YWE Age: 18–25 years Sex: NR Race/Ethnicity: NR SES: NR	Seizure type: NR Time since diagnosis: NR Age at onset: NR Family history of epilepsy: NR AED type: NR	Examine epilepsy disclosure in university students Design: Qualitative Measure: Semi-structured interview	Perceived stigma identified as a barrier to disclosure Perceived Stigma: positive association with maladaptive coping. Manifestation: Anticipate negative peer response. Protective factor: strong friendships Disclosure: Voluntary disclosure strengthened friendships; Unintended disclosure disrupted friendships. Facilitators: perception of peer as trust worthy and likelihood of “normal” treatment. Barriers: concern about being discredited, other’s lack of knowledge or misconceptions about epilepsy.
Westbrook et al (1992)^Citation26 USA Setting: Hospital	N: 64 YWE Age: 12–20 years Sex: 61% female Race/Ethnicity: 42% White, 33% Hispanic, 25% Black SES: 69% Lower; 28% Middle, 3% Upper	Seizure type: focal, generalized Time since diagnosis (M): 8 years Age at onset: NR Family history of epilepsy: NR AED type: NR	Assess perceived stigma, disclosure, self-esteem among YWE Design: Quantitative Measures: Perceived stigma questionnaire; Disclosure Management Survey	Perceived stigma was not significantly associated with disclosure Perceived Stigma: 26% endorsed sometimes/often perceiving epilepsy to negatively affect peer acceptance and social inclusion. Perceived stigma higher in younger YWE vs older YWE; Higher perceived stigma predicted lower self-esteem Disclosure: 78% disclosed to all or some friends, 65% voluntary disclosure, 35% unintentional disclosure, 70% rarely/never talk about diagnosis
Wilde & Haslam (1996)^Citation16 UK Setting: Hospital	N: 24 YWE Age: 13–25 years Sex: 62.5% female Race/Ethnicity: NR SES: NR	Seizure type: focal, generalized Time since diagnosis: NR Age at onset: 54% aged 6–12 years Family history of epilepsy: NR AED type: NR	Explore barriers to YWE disclosing external to family Design: Qualitative Measure: Semi-structured interview	Perceived stigma identified as a barrier to disclosure Perceived Stigma: 20% reported perceived stigma. Manifestation: anticipate other’s negative responses, negative self-perceptions. Facilitators: restriction to normative social activities. Protective factors: acceptance of condition. Disclosure: Nearly all disclosed to their best friends. The majority engaged in preventative disclosure for support during a seizure and to prevent discrimination. Majority of peer responses positive.

Abbreviations: NR, not reported; YWE, yYouth with epilepsy; M, mean; EDS, Epilepsy Disclosure Scale.

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