Institute of Philosophical Research, University Jean Moulin Lyon III, 18 rue Chevreul, 69007 Lyon, France; University Lyon I, Laboratory of Science, Society, History, Education and Practice (S2HEP), Lyon, France.
Medical Center of La Teppe, 25 Avenue de la Bouterne, 26600 Tain-l'Hermitage, France.
Epilepsy Behav. 2021 Mar;116:107795. doi: 10.1016/j.yebeh.2021.107795. Epub 2021 Feb 2.
The aim of the study was to develop a new conceptual framework of empowerment based upon the perspective of patients with refractory epilepsy at the medical-social center of La Teppe (France). A qualitative research methodology was used, which consisted of focused ethnography and in-depth interviews. The 19 patients interviewed came from three hospital services and were in the age range of 20-60. Ten interviews were also conducted with healthcare providers, which included neurologists, psychiatrists, nurses, and social educators. Results were analyzed via an intuitive process of thematic analysis. The researcher also constructed narrative cases of the patient interview to better understand patient responses in context. The results show that patients understood empowerment as the ability to develop and take advantage of opportunities in their overall lives. This included searching to be healthy by reducing their seizures, developing their practical reason in order to be able to make more autonomous life choices, and living with and toward others in positive social relationships. The patient's perspective on empowerment encompasses but also goes beyond their medical care. We therefore propose a novel conceptual framework for empowerment as the patient's capabilities to develop and make their life choices, with help as needed from their support network. In order to help patients toward empowerment, clinical care can include discussions and dedicate resources that help patients work toward their overall life projects. Several methodologies, including the use of a personalized project and therapeutic patient education, are elaborated to give ideas for empowerment programming in epilepsy care.
这项研究的目的是基于法国拉泰普（La Teppe）医疗社会中心的难治性癫痫患者的观点，建立一个新的赋权概念框架。采用了定性研究方法，包括焦点民族志和深入访谈。接受访谈的 19 名患者来自三个医院科室，年龄在 20-60 岁之间。还对 10 名医护人员进行了访谈，包括神经科医生、精神科医生、护士和社会教育工作者。通过直观的主题分析过程对结果进行了分析。研究人员还构建了患者访谈的叙述案例，以更好地了解患者在上下文中的反应。结果表明，患者将赋权理解为在他们的整体生活中发展和利用机会的能力。这包括通过减少癫痫发作来寻求健康，发展实践理性以便能够做出更自主的生活选择，以及与他人保持积极的社会关系。患者对赋权的看法不仅包括而且超出了他们的医疗护理。因此，我们提出了一个新的赋权概念框架，即患者发展和做出生活选择的能力，在需要时可以得到他们的支持网络的帮助。为了帮助患者赋权，临床护理可以包括讨论和投入资源，帮助患者努力实现他们的整体生活项目。还详细阐述了几种方法，包括使用个性化项目和治疗性患者教育，为癫痫护理中的赋权计划提供了思路。
