Ploughman Michelle, Austin Mark W, Murdoch Michelle, Kearney Anne, Godwin Marshall, Stefanelli Mark
Eastern Health ; Faculty of Medicine.
Physiother Can. 2012 Winter;64(1):6-17. doi: 10.3138/ptc.2010-42. Epub 2012 Jan 31.
This qualitative study sought to explore older people's experience of ageing with multiple sclerosis (MS) and to describe the natural history of self-management from their points of view.
Eighteen people over age 55 and living with MS for at least 20 years were recruited from an MS clinic and rehabilitation outpatient records. Interviews (60-80 min), using open-ended questions, explored participants' lifelong experiences of MS. Following interview transcription, data were coded and analyzed; themes, subthemes, and their relationships were described based on consensus.
Participants recounted their diagnosis process, their life experience with MS, and how they eventually accepted their disease, adapted, and moved toward self-management. The findings included vivid descriptions of social relationships, health care interactions, overcoming barriers, and the emotions associated with living with MS. A conceptual model of phases of self-management, from diagnosis to integration of MS into a sense of self, was developed.
Study participants valued self-management and described its phases, facilitators, and inhibitors from their points of view. Over years and decades, learning from life experiences, trial and error, and interactions with health care professionals, participants seemed to consolidate MS into their sense of self. Self-determination, social support, strong problem-solving abilities, and collaborative relationships with health professionals aided adaptation and coping. Findings from this study make initial steps toward understanding how MS self-management evolves over the life course and how self-management programmes can help people with MS begin to manage wellness earlier in their lives.
本定性研究旨在探索老年人患多发性硬化症（MS）的衰老体验，并从他们的角度描述自我管理的自然历程。
从一家MS诊所和康复门诊记录中招募了18名年龄在55岁以上且患有MS至少20年的患者。采用开放式问题进行访谈（60 - 80分钟），以探究参与者患MS的毕生经历。访谈转录后，对数据进行编码和分析；基于共识描述主题、子主题及其关系。
参与者讲述了他们的诊断过程、患MS的生活经历，以及他们最终如何接受疾病、适应并走向自我管理。研究结果包括对社会关系、医疗保健互动、克服障碍以及与患MS相关的情绪的生动描述。构建了一个从诊断到将MS融入自我意识的自我管理阶段概念模型。
研究参与者重视自我管理，并从他们的角度描述了其阶段、促进因素和阻碍因素。经过数年乃至数十年，通过从生活经历、反复试验以及与医疗保健专业人员的互动中学习，参与者似乎将MS融入了他们的自我意识。自我决定、社会支持、强大的解决问题能力以及与健康专业人员的协作关系有助于适应和应对。本研究结果朝着理解MS自我管理如何在生命历程中演变以及自我管理计划如何帮助MS患者在生命早期开始管理健康迈出了初步步伐。
