Educational needs of persons with epilepsy: A qualitative study

Rinki Ghosh, B. Arunjyoti
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Abstract

Background: Epilepsy is a devastating global health concern and can develop at any time in one's life. Inadequate knowledge and awareness about the disease and its causation, discrimination, social stigma are the most prevalent factors which often dissuade persons with epilepsy from seeking treatment. Methods: The study used descriptive qualitative research design and semi-structured interview to explore the educational needs of persons with epilepsy. Non-probability purposive sampling technique was used for selection of study sample based on study eligibility criteria. Data saturation was achieved after interviewing 8 samples. Thematic analysis was performed for analysis of the data. Statements were coded and different codes were collated into categories and subsequently into themes. Rigor and quality of the data was ensured using measures of credibility, transferability, dependability and conformability. Results: Three major themes namely exiguous knowledge, Deviant epilepsy management and Pragmatic challenges emerged from the analysis. The study finding revealed poor knowledge and awareness and inadequate skill in epilepsy self-management amidst many challenges among majority of the study participants. Conclusion: Therefore, there is a need to educate people with epilepsy about the disease and its self-management to manage their epilepsy well and enhance their quality of life.
癫痫患者的教育需要:一项定性研究
背景:癫痫是一种破坏性的全球健康问题,可以在一个人一生中的任何时候发生。对该病及其病因的了解和认识不足、歧视、社会污名是阻碍癫痫患者寻求治疗的最普遍因素。方法:采用描述性定性研究设计和半结构化访谈法对癫痫患者的教育需求进行调查。根据研究资格标准,采用非概率目的抽样技术选择研究样本。8个样本访谈后达到数据饱和。对数据进行专题分析。对陈述进行编码,不同的编码按类别整理,然后按主题整理。采用可信性、可转移性、可靠性和一致性等措施确保数据的严谨性和质量。结果:从分析中得出了三个主要主题,即缺乏知识、异常癫痫管理和务实挑战。研究结果表明,在许多挑战中,大多数研究参与者在癫痫自我管理方面缺乏知识和意识,技能不足。结论:有必要对癫痫患者进行有关该病及其自我管理的教育,以更好地控制癫痫,提高患者的生活质量。
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