开发并验证癫痫认知和教育计划:缩小癫痫患者及其家人在知识和支持方面的差距。

IF 2 3区 医学 Q2 MEDICINE, GENERAL & INTERNAL
Patient preference and adherence Pub Date : 2024-11-07 eCollection Date: 2024-01-01 DOI:10.2147/PPA.S463151
Ofhani Prudance Musekwa, Lufuno Makhado, Angelina Maphula
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引用次数: 0

摘要

有关癫痫意识和知识的各种癫痫研究都强调了与癫痫、癫痫患者(PLWE)及其家人相关的潜在神话、误解、污名化和歧视。本研究旨在制定一项癫痫认知和教育计划,以提高癫痫患者及其家人对癫痫的认知和支持。参与式行动研究(PAR)为该计划的调查、开发和实施奠定了基础。研究的利益相关者(共同研究者)包括 PLWE、家庭成员和照顾者 (FMC)、社区成员和医疗保健提供者 (HCP),他们参与了研究的启动、数据收集、计划开发和验证。研究包括四个阶段:第一阶段是系统回顾,第二阶段是包括解释性顺序混合法在内的实证阶段,第三阶段是元推论和概念化,最后一个阶段是计划的开发和验证。研究的所有阶段都为计划的制定提供了信息(使用计划制定的步骤指南)。从中找出了差距和潜在的教育需求。这些差距包括农村社区对癫痫的认识不足、态度消极和认识不足,以及需要为 PLWE 和家庭医疗中心提供支持和护理。该计划的实施将改善边缘化社区的癫痫知识、护理和支持,建立更有利的环境,最终提高患者及其家人的生活质量。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Developing and Validating an Epilepsy Awareness and Education Program: Bridging Gaps in Knowledge and Support for People Living with Epilepsy and Their Families.

Various epilepsy studies on epilepsy awareness and knowledge highlight underlying myths, misconceptions, stigma, and discrimination associated with epilepsy, People Living with Epilepsy (PLWE), and their families. This study aimed to develop an epilepsy awareness and education programme to enhance epilepsy awareness and support among individuals living with epilepsy and their families. Participatory Action Research (PAR) laid the ground for the programme's investigation, development, and implementation. The study stakeholders (co-researchers) included PLWE, family members and caregivers (FMCs), community members, and health care providers (HCPs) who participated in the inception of the study, data collection, programme development, and validation. The study included four phases: phase one was a systematic review, phase two was an empirical phase that included an explanatory sequential mixed method, phase three was meta-inferences and conceptualization, and the last phase was the development and validation of the programme. All phases of the study informed the development of the programme (using a step-step guide to programme development). From these, the gaps and potential education needs were identified. Gaps such as insufficient knowledge about epilepsy in rural communities, negative attitudes and satisfactory awareness, and a need for support and care for PLWE and FMCs. Implementation of this programme will improve epilepsy knowledge, care, and support in marginalised communities, establishing a more conducive environment and ultimately improving the quality of life for patients and their families.

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来源期刊
Patient preference and adherence
Patient preference and adherence MEDICINE, GENERAL & INTERNAL-
CiteScore
3.60
自引率
4.50%
发文量
354
审稿时长
6-12 weeks
期刊介绍: Patient Preference and Adherence is an international, peer reviewed, open access journal that focuses on the growing importance of patient preference and adherence throughout the therapeutic continuum. The journal is characterized by the rapid reporting of reviews, original research, modeling and clinical studies across all therapeutic areas. Patient satisfaction, acceptability, quality of life, compliance, persistence and their role in developing new therapeutic modalities and compounds to optimize clinical outcomes for existing disease states are major areas of interest for the journal. As of 1st April 2019, Patient Preference and Adherence will no longer consider meta-analyses for publication.
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