University of Worcester, Worcester, United Kingdom.
University of Alabama at Birmingham, Birmingham, Alabama, USA.
Qual Health Res. 2021 Aug;31(10):1861-1874. doi: 10.1177/10497323211009864. Epub 2021 Apr 30.
Aging with multiple sclerosis (MS) is a complex phenomenon. Some individuals report physical and cognitive dysfunctions regarding these combined experiences, whereas others report perceived improvements in quality of life. Beyond this, little is known regarding how people make sense of, and come to embody, negative or positive experiences of MS. Thus, our objectives were to (a) explore how people made sense of aging with MS and (b) present this in an artful, engaging, transformative way. To achieve this, we conducted 40 semi-structured interviews with older adults who had MS, analyzed data using pluralistic narrative analyses, and presented results through two creative nonfictions. We detail our process of creating the nonfictions before presenting the different stories of aging with MS, namely "Kicking and Screaming" and "Gracefully Conceding." We then offer recommendations and implications for using these stories as knowledge translation devices, and further critique the limitations of these stories in practice.
多发性硬化症患者的老龄化是一个复杂的现象。一些人报告说，他们在这些综合体验中存在身体和认知功能障碍，而另一些人则报告说生活质量有所改善。除此之外，人们如何理解和体现多发性硬化症的负面或正面体验，这方面的了解甚少。因此，我们的目标是(a)探讨人们如何理解多发性硬化症患者的老龄化，以及(b)以一种富有艺术性、引人入胜、具有变革性的方式呈现这一点。为了实现这一目标，我们对 40 名患有多发性硬化症的老年人进行了半结构化访谈，使用多元叙事分析方法对数据进行了分析，并通过两篇非小说类创意作品呈现了研究结果。我们详细介绍了创作非小说类作品的过程，然后呈现了与多发性硬化症患者老龄化有关的两个不同故事，即“踢踏尖叫”和“优雅让步”。我们随后提供了将这些故事用作知识转化工具的建议和启示，并进一步对这些故事在实践中的局限性进行了批评。
