Educational video and story as effective interventions reducing epilepsy-related stigma among children

Brabcová, Dana; Kohout, Jiřı́; Weberová, Veronika; Komárek, Vladimı́r

doi:10.1016/j.yebeh.2017.01.019

Cited by 18 publications

(20 citation statements)

References 25 publications

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“…The finding that one quarter of SEISMIC participants reporting perceived stigma is lower than in a Korean cohort, where 69% reported keeping their diagnosis secret from others [48], while 90% of those in Turkish study reported stigma as the main reason to conceal their diagnosis from others [49]. Educational videos and peer support groups may be useful in reducing epilepsyrelated stigma [50,51].…”

Section: Discussionmentioning

confidence: 82%

Disability patterns over the first year after a diagnosis of epilepsy

Neuen

Glozier

et al. 2019

Clinical Neurology and Neurosurgery

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2019) Disability patterns over the first year after a diagnosis of epilespy. Clinical Neurology and Neurosurgery, 179,[60][61][62][63][64][65] Objective: To determine the patterns and predictors of disability over the first 12 months after a diagnosis of epilepsy. Patients and methods: The Sydney Epilepsy Incidence Study to Measure Illness Consequences (SEISMIC) was a prospective, multicenter, community-based study of people with newly diagnosed epilepsy in Sydney, Australia. Disability was assessed using the World Health Organization's, Disability Assessment Schedule (WHODAS) 2.0 12-item version, at baseline (i.e. within 28 days of diagnosis) and 12 months post-diagnosis. Demographic, socioeconomic, clinical and epilepsy-related data, obtained through structured interviews, were entered into multivariable linear regression and shift analysis to determine predictors of greater disability. Results: Of 259 adults (≥18 years), 190 (73%) had complete WHODAS at baseline (mean ± SD scores 4 ± 6) and follow-up (4 ± 8). After adjustment for age, sex and co-morbidity, greater overall disability at 12 months was associated with lower education (P = 0.05), economic hardship (P = 0.004), multiple antiepileptic medications (P = 0.02) and greater disability (P < 0.001) at the time of diagnosis; these variables explained 38.3% of the variance. Among the 12 WHODAS items, "being emotionally affected by health problems" was the most frequent disability problem identified at both time points (all P < 0.0001). The proportion of participants without problems in that domain improved over 12 months (from 24% to 50%, P < 0.0001), whereas the other 11 items remained relatively stable. Independent baseline predictors of a worse emotional outcome at 12 months were severe/extreme emotional distress (odds ratio [OR] 4.52, 95% confidence intervals [CI] 1.67-12.24), economic hardship (OR 2.30, 95% CI 1.24-4.25) and perceived stigma (OR 2.02, 95% CI 1.03-3.93). Conclusion: Most people report problems with emotional health after a diagnosis of epilepsy but many recover over the next 12 months. Services addressing the social and psychological impact of diagnosis may be needed to improve outcome.

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Section: Discussionmentioning

confidence: 82%

Disability patterns over the first year after a diagnosis of epilepsy

Neuen

Glozier

et al. 2019

Clinical Neurology and Neurosurgery

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“…Two month post intervention, the parental perception of “understanding” dropped by 30% close to baseline pre-intervention revealing the lack of sustained effectiveness. In contrast, published school interventions for childhood epilepsy demonstrated a sustained effect at the six month follow-up [21]. Bracbcova et al utilized an information video ( N = 89) and a personal story ( N = 93) to improve disease-related knowledge and negative perceptions of students towards their peers.…”

Section: Discussionmentioning

confidence: 99%

Living with autoinflammatory diseases: identifying unmet needs of children, adolescents and adults

et al. 2018

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BackgroundAutoinflammatory diseases (AIDs) illnesses of the innate immunity resulting in clinical signs and symptoms of systemic inflammation and loss of organ functions. While pathophysiological mechanisms are heavily studied and increasingly well understood, psychosocial needs are much less explored. The disease impact on the everyday life of patients including school and work is poorly studied. The purpose of the study was to identify the spectrum of unmet needs of children, adolescents and adults living with autoinflammatory disease and their families, to define key unmet needs and strategies and to develop and evaluate a pilot intervention addressing the unmet need “school”.MethodsA single-center, mixed-method study of AID patients and their families was conducted. Consecutive patients ages ≥4 years and their families were included. Expert consulting, focus groups and questionnaires explored the patient perspective of “unmet needs in AID”. Quantitative and qualitative content analyses were performed and informed the development of a framework of unmet needs. A targeted pilot multimodular intervention for the unmet need “school” was developed and tested. Health-related Quality of Life (HRQoL) was evaluated using DISABKIDS-questionnaires and psychosocial impact evaluations.ResultsThe study included 83 patients and their families. These were 14 children, 9 adolescents and 25 adults with AID and 35 family members; patients’ median age was 19 years (5–78). Expert consultations: 110 AID patients with 320 visits/year; 99 (90%) were children and adolescents. 78 patients and family members (94%) participated in 10 groups. Qualitative content analysis delineated 9 domains of unmet needs, the most relevant being school, health care system and public institutions. The pilot intervention“school” included 18 participants; median age was 9 years (7–16). HRQoL improved with the intervention including “understanding” by 53%, however improvement was not sustained over time.ConclusionUnmet needs of AID patients and families affect all areas of life. Accessible networks increasing knowledge and empowering patients, strategies supporting academic and workplace environments to ensure successful participation and integrated concepts addressing psychosocial needs are urgently needed.

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“…Adequate attention was not given to the convergent validity of the questionnaire. In our previous study focused on the effectiveness of interventions on reducing stigma, significant positive correlations between the SSE and a test measuring knowledge of epilepsy were observed suggesting convergent validity of the Czech version of SSE [ 23 ]. However, these variables should be examined in more detail.…”

Section: Discussionmentioning

confidence: 99%

Psychometric properties of the Czech version of the Stigma Scale of Epilepsy

et al. 2018

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Although significant attention has been devoted to analyzing stigma associated with epilepsy, there is still a significant lack of valid and reliable instruments. We aimed to validate the 23-item Czech version of the Stigma Scale of Epilepsy (SSE; originally developed in Brazil), which has been used to evaluate epilepsy-related stigma in the general population. Verification of the SSE questionnaire was carried out in a group of 207 students aged 15–18 years of whom none had epilepsy. These students completed the SSE twice in a period of 3–6 months as part of standard test-retest evaluation practice. The instrument exhibits good psychometric properties including internal consistency higher than in the original version (Cronbach’s alpha of 0.856 here compared with 0.81 reported in Brazil) and acceptable test-retest reliability. Using exploratory factor analysis (not provided for the original version), four factors were identified and corresponding subscales were described and interpreted. Two items did not fit into the structure and were eliminated. Confirmatory factor analysis was used to propose and verify the hierarchical 4-factor structure of the Czech version of SSE confirming the existence of a common factor corresponding to stigma. The results showed that the Czech version of SSE has good psychometric properties and can be used in further research and clinical practice.

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Educational video and story as effective interventions reducing epilepsy-related stigma among children

Cited by 18 publications

References 25 publications

Disability patterns over the first year after a diagnosis of epilepsy

Disability patterns over the first year after a diagnosis of epilepsy

Living with autoinflammatory diseases: identifying unmet needs of children, adolescents and adults

Psychometric properties of the Czech version of the Stigma Scale of Epilepsy

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