Walker Elizabeth Reisinger, Barmon Christina, McGee Robin E, Engelhard George, Sterk Claire E, DiIorio Colleen, Thompson Nancy J
Rollins School of Public Health, Department of Health Policy and Management, Emory University, USA.
Department of Sociology, Georgia State University, USA.
Epilepsy Behav. 2015 Dec;53:1-9. doi: 10.1016/j.yebeh.2015.09.023. Epub 2015 Oct 24.
Epilepsy is a chronic condition that significantly affects the lives of individuals with epilepsy and their support persons, though few studies have examined the experiences of both. To examine these experiences and explore the interpersonal relationships between dyad members, we conducted in-depth interviews with 22 persons with epilepsy and 16 support persons. Data analysis was guided by a grounded theory perspective. We developed a model that shows how epilepsy impacts the lives of both persons with epilepsy and their support persons and how the experiences of persons with epilepsy and supporters influence one another. The core model elements were seizure and treatment factors, relationship characteristics, self-management, seizure control, support provided, illness intrusiveness, and quality of life. Persons with epilepsy moved through the model in five trajectories depending on seizure control, relationship type, and gender. Support providers followed four trajectories based on seizure control, perception of burden, and support for themselves. Persons with epilepsy and their primary support providers have varied experiences in how epilepsy affects their lives. This model could serve as a basis for future research and intervention efforts focused on ways to reduce illness intrusiveness and improve quality of life for persons with epilepsy and their supporters.
癫痫是一种慢性疾病，严重影响癫痫患者及其照料者的生活，不过很少有研究考察过这两类人群的经历。为了探究这些经历并探索二元组成员之间的人际关系，我们对22名癫痫患者和16名照料者进行了深入访谈。数据分析以扎根理论视角为指导。我们构建了一个模型，展示癫痫如何影响癫痫患者及其照料者的生活，以及癫痫患者和照料者的经历如何相互影响。核心模型要素包括发作和治疗因素、关系特征、自我管理、发作控制、提供的支持、疾病侵扰和生活质量。癫痫患者根据发作控制、关系类型和性别，沿着五条轨迹在模型中变化。照料者根据发作控制、对负担的感知以及对自身的支持，遵循四条轨迹。癫痫患者及其主要照料者在癫痫对其生活的影响方面有着不同的经历。该模型可为未来聚焦于减少疾病侵扰、改善癫痫患者及其照料者生活质量的研究和干预工作提供基础。
