Development & validation of scales to assess stigma related to COVID-19 in India

Background & objectives: COVID-19 pandemic has triggered social stigma towards individuals affected and their families. This study describes the process undertaken for the development and validation of scales to assess stigmatizing attitudes and experiences among COVID-19 and non-COVID-19 participants from the community. Methods: COVID-19 Stigma Scale and Community COVID-19 Stigma Scale constituting 13 and six items, respectively, were developed based on review of literature and news reports, expert committee evaluation and participants’ interviews through telephone for a multicentric study in India. For content validity, 61 (30 COVID-19-recovered and 31 non-COVID-19 participants from the community) were recruited. Test–retest reliability of the scales was assessed among 99 participants (41 COVID-19 recovered and 58 non-COVID-19). Participants were administered the scale at two-time points after a gap of 7-12 days. Cronbach’s alpha, overall percentage agreement and kappa statistics were used to assess internal consistency and test–retest reliability. Results: Items in the scales were relevant and comprehensible. Both the scales had Cronbach’s ? above 0.6 indicating moderate-to-good internal consistency. Test–retest reliability assessed using kappa statistics indicated that for the COVID-19 Stigma Scale, seven items had a moderate agreement (0.4-0.6). For the Community COVID-19 Stigma Scale, four items had a moderate agreement. Interpretation & conclusions: Validity and reliability of the two stigma scales indicated that the scales were comprehensible and had moderate internal consistency. These scales could be used to assess COVID-19 stigma and help in the development of appropriate stigma reduction interventions for COVID-19 infected, and mitigation of stigmatizing attitudes in the community.

Reliability and validity of the chinese version of self-stigma scale for patients with diabetes / 中国实用护理杂志

Objective To translate the Self-Stigma Scale (SSS )into chinese version and check its reliability and validity. Methods The Chinese version of Self-Stigma Scale was translated by Brislin method, the reliability and validity was tested in 750 diabetes patients. Results The Chinese version of Self-Stigma Scale includs 28 items three dimensions. Total scale Cronbach′s α :0.949, all subscales>0.8, Retest reliability coefficient:0.873.The scale average validity index (S-CVI/Ave) was 0.944. Confirmatory factor analysis results show that the GFI: AGFI: 0.833, 0.805, RMSEA: 0.065 the fitting indicators show that the fitting is good. Conclusions The revised Chinese SSS has good reliability and validity. It can be a suitable tool to evaluate stigma level of diabetes patient.

Psychometric evaluation of the Chinese version of the Cataldo Lung Cancer Stigma Scale (CLCSS) / 中华护理杂志

Objective To evaluate the psychometric characteristics of the Chinese version of Cataldo Lung Can cer Stigma Scale (CLCSS). Methods Convenience sampling was used to recruit 775 lung cancer patients in a tertiary hospital and some anticancer groups in Beijing,and the Chinese version of CLCSS was used to perform measure-ment. Results The S-CVI/UA was 0.87,and S-CVI/Ave was 0.96. Construct validity consisted of EFA and CFA. Through EFA,the Chinese version of CLCSS included four dimensions which accounted for 55.248% of the accu-mulated variance. Through CFA,all the indicators were in adaptation standard range. The test-retest reliability for the Chinese version of CLCSS was 0.801(P<0.01). Cronbach's α coefficient was 0.932,and Cronbach's α coeffi-cients for four dimensions ranged from 0.799 to 0.922. Conclusion The reliability and validity of the Chinese version of CLCSS are satisfactory and the Chinese version of CLCSS can be used among Chinese lung cancer patients.

Epilepsy perception amongst education professionals / Percepção de epilepsia entre profissionais da educação

INTRODUCTION: Epilepsy is a prevalent neurological disorder that may cause school failure due to several factors such as seizure severity, lack of information about the condition and stigma. This study aimed to evaluate the degree of perceived stigma and knowledge towards epilepsy among education professionals, and additionally, provide them correct information about epilepsy to reduce stigma through a training course. METHODS: Social and demographic data, as well as the degree of stigma were obtained through the Stigma Scale of Epilepsy. To estimate the level of educational professionals' knowledge about epilepsy we used the Questionnaire about Epilepsy. Statistical analysis consisted of Pearson's or Spearman's correlation tests for numerical parametric or non-parametric variables were used to determine potential significant associations. A p <0.05 was considered significant. RESULTS: Two hundred and twenty-five education professionals were interviewed in three different cities in Southern Brazil. Approximately 65% of subjects would attempt to open the mouth of a student during a seizure and the stigma measured by Stigma Scale of Epilepsy before the course was 45.4±16.61. CONCLUSION: The data indicate that education professionals have partial knowledge about epilepsy and a short duration course would be able to improve it and reduce its stigma in this population.

INTRODUÇÃO: A epilepsia é uma doença neurológica prevalente que pode causar fracasso escolar devido a fatores como severidade das crises, pouca informação sobre a doença e estigma. Este estudo teve como objetivo avaliar a percepção do estigma e conhecimento em epilepsia pelos profissionais de educação, fornecer informações corretas sobre epilepsia e reduzir o estigma através de um curso de curta duração. METODOLOGIA: Os dados sociodemográficos e o grau de estigma foram obtidos através da Escala de Estigma em Epilepsia. O grau de conhecimento em epilepsia foi obtido através da adaptação do Questionário Sobre Epilepsia. O teste de correlação de Pearson ou Spearman foi utilizado para análise das variáveis numéricas contínuas paramétricas ou não-paramétricas. O valor de p<0,05 foi considerado significante. RESULTADOS: Duzentos e vinte e cinco sujeitos foram entrevistados em três cidades do Sul do Brasil. Aproximadamente 65% deles abriria a boca do estudante durante uma crise e o grau do estigma avaliado com a Escala de Estigma em Epilepsia pré-curso foi de 45.4±16.61. CONCLUSÃO: Os dados indicam que os profissionais da educação têm um conhecimento pacial sobre epilepsia e que um curso de curta duração foi capaz de aumentar o conhecimento e reduzir o estigma na população estudada.

Stigma scale of epilepsy: the perception of epilepsy stigma in different cities in Brazil / Percepção do estigma na epilepsia em diferentes cidades do Brasil

PURPOSE: To assess the perception of epilepsy stigma in different regions of Brazil. METHOD: The Stigma Scale of Epilepsy (SSE) questionnaire was applied to people in different Brazilian urban settings. The survey was performed on individual basis; an interviewer read the questions to the subjects and wrote down the answers. The same procedure was applied to all the subjects and took around 10 minutes. RESULTS: 266 questionnaires were completed in four different towns of Brazil (Curitiba=83; São Paulo=47; Vila Velha=79; Ipatinga=57). The overall stigma score was 49.7 (median). Different scores were obtained in each locality. Vila Velha=42; Curitiba=49; São Paulo=52; Ipatinga=54 (ANOVA [2.262]=3.82; p=0.01). CONCLUSION: This study showed differences in the perception of stigma, which may depend on cultural and regional aspects. The concept of stigma has cultural perspectives, depending on the region and the context where each person lives. The understanding of this aspect of epilepsy is important to promote better de-stigmatization campaigns, considering the cultural and social differences.

OBJETIVO: Identificar a percepção do estigma na epilepsia em diferentes regiões do Brasil. MÉTODO: A Escala de Estigma na Epilepsia foi aplicada em 266 pessoas de quatro diferentes cidades do Brasil (Curitiba, São Paulo, Vila Velha e Ipatinga). Em todas as situações, as pessoas foram entrevistadas individualmente, sendo que as questões eram lidas para os sujeitos. As condições de aplicação foram as mesmas nas cidades e a aplicação durou aproximadamente 10 minutos. RESULTADOS: Foram aplicados 266 questionários em três diferentes cidades do Brasil (Curitiba=83; São Paulo=47; Vila Velha=79; Ipatinga=57). A média do escore geral da EEE foi 49,7. Na avaliação das quatro cidades separadamente, houve diferença significativa entre elas: Vila Velha=42; Curitiba=49; São Paulo=52 e Ipatinga=54 (ANOVA [2,262]=3,82; p=0,01). CONCLUSÃO: Este estudo mostrou diferenças na percepção do estigma, de acordo com as diferenças culturais e regionais. Neste contexto, podemos falar de uma perspectiva cultural para o conceito de estigma, sendo influenciado pela região e pelo contexto no qual a pessoa está inserida. O entendimento deste processo do estigma é importante para se propor campanhas efetivas de intervenção no estigma da epilepsia, considerando as diferenças sociais e culturais.

Stigma scale of epilepsy: validation process

PURPOSE: To validate a Stigma Scale of Epilepsy (SSE). METHODS: The SSE was completed by 40 adult with epilepsy attending an Outpatient Epilepsy Clinic at the University Hospital of UNICAMP, and by 40 people from the community. People were interviewed on an individual basis; a psychologist read the questions to the subjects who wrote the answers in a sheet. The procedure was the same for all the subjects and completion took around ten minutes. RESULTS: The SSE has 24 items. The internal consistency of the SSE showed alpha CronbachÆs coefficient 0.88 for the patients with epilepsy and 0.81 for the community. The overall mean scores of the Stigma Scale of Epilepsy formula were: 46 (SD=18.22) for patients and 49 (SD=13.25) for the community where a score of 0 would suggest no stigma, and 100 maximum stigma. DISCUSSION: The SSE has satisfactory content validity and high internal consistency. It allows the quantification of the perception of stigma by patients and people from community; this can then be used for interventional studies, such as mass media campaign in minimizing the negative facets of stigma.

OBJETIVO: Validar a Escala de Estigma na Epilepsia (EEE). MÉTODO: A EEE foi aplicada em 40 pacientes adultos com o diagnóstico de Epilepsia do Ambulatório de Epilepsia do HC/Unicamp e em 40 pessoas da comunidade em geral. Os sujeitos foram entrevistados individualmente pelas psicólogas, que foram lendo as questões e anotando as respostas na escala. As condições de aplicação foram as mesmas e a aplicação durou cerca de 10 minutos. RESULTADOS: A EEE possui 24 itens. A consistência interna da EEE mostrou alfa de Cronbach, de 0,88 para os pacientes com epilepsia e 0,81 para a comunidade. As médias do valor geral de estigma obtido com a fórmula da EEE foram: 46 (DP=18,22) para os pacientes e 49 (DP=13,25) para a comunidade. DISCUSSÃO: A EEE possui uma satisfatória validade e alta consistência interna. Isso permite uma quantificação da percepção de estigma da epilepsia na comunidade em geral, que pode ser utilizada para estudos interventivos, como campanhas na mídia, para minimizar as facetas negativas do estigma na sociedade.