Ring Adele, Jacoby Ann, Baker Gus A, Marson Anthony, Whitehead Margaret M
Department of Public Health & Policy, University of Liverpool, Liverpool, UK.
Department of Public Health & Policy, University of Liverpool, Liverpool, UK.
Epilepsy Behav. 2016 Mar;56:153-64. doi: 10.1016/j.yebeh.2016.01.002. Epub 2016 Feb 17.
A significant body of research highlights negative impacts of epilepsy for individual quality of life (QOL). Poor seizure control is frequently associated with reporting of poor QOL and good seizure control with good QOL; however, this is not a universal finding. Evidence suggests that some people enjoy good QOL despite ongoing seizures while others report poor QOL despite good seizure control. Understanding the factors that influence QOL for people with epilepsy and the processes via which such factors exert their influence is central to the development of interventions to support people with epilepsy to experience the best possible QOL. We present findings of a qualitative investigation exploring influences and processes on QOL for people with epilepsy. We describe the clinical, psychological, and social factors contributing to QOL. In particular, we focus on the value of the concept of resilience for understanding quality of life in epilepsy. Based on our analysis, we propose a model of resilience wherein four key component sets of factors interact to determine QOL. This model reflects the fluid nature of resilience that, we suggest, is subject to change based on shifts within the individual components and the interactions between them. The model offers a representation of the complex influences that act and interact to either mitigate or further compound the negative impacts of epilepsy on individual QOL.
大量研究突出了癫痫对个体生活质量（QOL）的负面影响。癫痫发作控制不佳常与生活质量差相关，而发作控制良好则与生活质量良好相关；然而，这并非普遍现象。有证据表明，一些人尽管癫痫持续发作，但生活质量良好，而另一些人尽管发作控制良好，却报告生活质量差。了解影响癫痫患者生活质量的因素以及这些因素发挥作用的过程，对于开发干预措施以支持癫痫患者获得尽可能好的生活质量至关重要。我们展示了一项定性调查的结果，该调查探讨了影响癫痫患者生活质量的因素和过程。我们描述了影响生活质量的临床、心理和社会因素。特别是，我们关注复原力概念对于理解癫痫患者生活质量的价值。基于我们的分析，我们提出了一个复原力模型，其中四个关键因素集相互作用以决定生活质量。我们认为，该模型反映了复原力的动态性质，它可能会根据各个组成部分内部的变化以及它们之间的相互作用而发生改变。该模型呈现了各种复杂影响的情况，这些影响相互作用，要么减轻、要么进一步加剧癫痫对个体生活质量的负面影响。
