Interventions focusing on epilepsy self-management (ESM) are vital for promoting the health of people living with epilepsy. E-technology and mobile health (mHealth) tools are becoming increasingly integrated into practice to promote self-management strategies for chronic diseases, enhance care delivery, and reduce health disparities. Management Information and Decision Support Epilepsy Tool (MINDSET), a bilingual decision support tool (available in English and Spanish), was found to be both feasible and effective in facilitating goal-based ESM in the clinic. To assess the experience of using MINDSET as an ESM intervention among Hispanic patients with epilepsy to inform future interventional studies. This study used a framework to provide a rich and straightforward description of patients’ subjective experiences using MINDSET. Participants were enrolled in the intervention group of a larger parent study (RCT) to assess the efficacy of MINDSET among Hispanic People with Epilepsy (PWE). The purposive, convenient, criterion-based sample for this qualitative analysis comprised of 42 patients who agreed to participate in a semi-structured interview at the end of the larger RCT. This RCT was conducted between August 2017 and January 2019. Spanish and English-speaking Hispanic adult patients (n = 94) with epilepsy in Arizona (n = 53) and Texas (n = 41) were randomly assigned within 6 neurology clinics to treatment (MINDSET plus Usual Care, hereafter referred to as MINDSET; n = 46) and comparison (Usual Care Only; n = 48) conditions. Patient demographics, epilepsy conditions, and ESM behavioral characteristics were representative of the intervention group. Study participants were Hispanic, mainly of Mexican descent (94 %), with a mean age of 39 years, mostly female (53 %), and most of the participants reported having had one or more seizures per month (54 %). The MINDSET intervention revealed five ESM themes: (1) Awareness and Realization of Epilepsy Self-Management, (2) Communication and Partnership with Health Care Providers HCP, (3) Epilepsy Self-Management and Quality of Life, (4) Seizure Control, and (5) Optimism and Agency. The participants who used MINDSET as a self-management intervention reported an overall positive experience. Qualitative data in this study show that MINDSET is a valuable ESM tool for Hispanic patients with epilepsy. Findings from this qualitative study were consistent with results from a larger parent study that recognized MINDSET as an effective platform for improving epilepsy self-management adherence.

中文翻译：

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西班牙裔患者使用 MINDSET 自我管理移动健康应用程序的体验：定性研究结果

专注于癫痫自我管理（ESM）的干预措施对于促进癫痫患者的健康至关重要。电子技术和移动医疗 (mHealth) 工具正日益融入实践，以促进慢性病的自我管理策略、加强护理服务并减少健康差距。癫痫管理信息和决策支持工具 (MINDSET) 是一种双语决策支持工具（提供英语和西班牙语版本），被发现在促进临床中基于目标的 ESM 方面既可行又有效。评估使用 MINDSET 作为西班牙裔癫痫患者 ESM 干预的经验，为未来的干预研究提供信息。这项研究使用了一个框架，通过 MINDSET 来提供对患者主观体验的丰富而直接的描述。参与者被纳入一项大型家长研究 (RCT) 的干预组，以评估 MINDSET 在西班牙裔癫痫患者 (PWE) 中的疗效。用于此定性分析的有目的的、方便的、基于标准的样本由 42 名患者组成，他们同意在较大的 RCT 结束时参加半结构化访谈。这项随机对照试验于 2017 年 8 月至 2019 年 1 月期间进行。亚利桑那州 (n = 53) 和德克萨斯州 (n = 41) 的西班牙语和英语西班牙裔成人癫痫患者 (n = 94) 被随机分配到 6 个神经科诊所接受治疗（ MINDSET 加 Usual Care（以下简称 MINDSET；n = 46）和比较（仅 Usual Care；n = 48）条件。患者人口统计、癫痫状况和 ESM 行为特征代表干预组。研究参与者是西班牙裔，主要是墨西哥后裔 (94%)，平均年龄 39 岁，大多数为女性 (53%)，大多数参与者报告每月有一次或多次癫痫发作 (54%)。 MINDSET 干预揭示了五个 ESM 主题：(1) 癫痫自我管理的意识和实现，(2) 与医疗保健提供者 HCP 的沟通和合作，(3) 癫痫自我管理和生活质量，(4) 癫痫控制， (5) 乐观和能动性。使用 MINDSET 作为自我管理干预措施的参与者报告了总体积极的体验。本研究中的定性数据表明，MINDSET 对于西班牙裔癫痫患者来说是一个有价值的 ESM 工具。这项定性研究的结果与一项更大规模的家长研究的结果一致，该研究认为 MINDSET 是提高癫痫自我管理依从性的有效平台。