Jönköping Academy for Improvement of Health and Welfare, School of Health and Welfare, Jönköping University, Jönköping, Sweden.
Futurum Academy for Health and Care, Jönköping, Sweden.
Brain Behav. 2023 Jul;13(7):e3104. doi: 10.1002/brb3.3104. Epub 2023 May 29.
Multiple sclerosis (MS) is a chronic autoimmune disease with a substantial impact on quality of life and functional capability. The prognosis of MS has changed over time due to the development of increasingly effective therapies. As the knowledge and perceptions of persons living with chronic conditions increasingly have been acknowledged, it has become important to understand lived experiences with a focus on everyday events and experiences as a way of knowing and interpreting the world. Exploring context-specific lived experiences as a source of knowledge about the disease and care may contribute to more precision in designing care services. The aim of this study was to explore the lived experience of persons living with MS in a Swedish context.
A qualitative interview study was conducted with both purposeful and random sampling strategies, resulting in 10 interviews. Data were analyzed using inductive thematic content analysis.
The analysis generated 4 overarching themes with 12 subthemes, the 4 themes were: perspectives on life and health, influence on everyday life, relations with healthcare, and shared healthcare processes. The themes are concerned with the patients' own perspectives and context as well as medical and healthcare-related perspectives. Patterns of shared experiences were found, for example, in the diagnosis confirmation, future perspectives, and planning and coordination. More diverse experiences appeared concerning relations with others, one's individual requirements, symptoms and consequences, and knowledge building.
The findings suggest a need for a more diverse and coproduced development of healthcare services to meet diverse needs in the population with greater acknowledgement of the person's lived experience, including consideration of the complexity of the disease, personal integrity, and different ways of knowing. Findings from this study will be further explored together with other quantitative and qualitative data.
多发性硬化症（MS）是一种慢性自身免疫性疾病，对生活质量和功能能力有重大影响。由于不断开发出更有效的治疗方法，MS 的预后已经发生了变化。随着人们对慢性病患者的认识和看法不断提高，了解他们的生活体验，关注日常生活中的事件和经历，以此作为了解和解释世界的一种方式，变得越来越重要。探索特定于背景的生活体验作为了解疾病和护理的知识来源，可能有助于更精确地设计护理服务。本研究旨在探讨瑞典多发性硬化症患者的生活体验。
采用目的性和随机抽样策略进行定性访谈研究，共进行了 10 次访谈。使用归纳主题内容分析法对数据进行分析。
分析生成了 4 个总体主题和 12 个子主题，4 个主题是：对生活和健康的看法、对日常生活的影响、与医疗保健的关系以及共享医疗保健过程。这些主题涉及患者自身的观点和背景以及医疗和医疗保健相关的观点。例如，在诊断确认、未来展望以及规划和协调方面，发现了共享体验的模式。在与他人的关系、个人需求、症状和后果以及知识建设方面，出现了更多不同的体验。
研究结果表明，需要更具多样性和共同制定的医疗保健服务发展，以满足人群中更多样化的需求，更多地承认个人的生活体验，包括考虑疾病的复杂性、个人完整性和不同的认知方式。本研究的结果将与其他定量和定性数据一起进一步探讨。
