Institute of Biomedical Ethics and Medical History, University Zurich, Winterthurerstrasse 30, CH-8006 Zurich, Switzerland.
Institute of Public Health (IPH), Department of Health Sciences Katharina-Sulzer-Platz 9, Zurich University of Applied Studies (ZHAW), CH-8401 Winterthur, Switzerland.
Int J Environ Res Public Health. 2022 Aug 29;19(17):10733. doi: 10.3390/ijerph191710733.
Multiple Sclerosis (MS) is a complex, lifelong disease. Its effects span across different areas of life and vary strongly. In Switzerland, there is an intense discussion on how to optimize quality of care and patient safety. Patients should be more involved in the management of health care to improve the quality of care from the patient's perspective and form a more comprehensive perspective. This multiple-case study explores the question of how persons with MS experience and describe functioning related barriers, facilitating factors, and ethically relevant conflicts. To address this from a comprehensive perspective, the MS core set of the International Classification for Functioning, Disability, and Health (ICF) is used as theoretical framework. To explore barriers, facilitators, and relevant ethical issues, different narrative sources were used for thematic analysis and ICF coding: (a) MS transcripts from DIPEx interviews and (b) an autobiographical book of persons living with MS. Insights that were meaningful for daily practice and education were identified: (a) understanding the importance of environmental circumstances based on narrative sources; (b) understanding the importance of a person's individual life situation, and the ability to switch perspectives in the medical field; (c) respect for PwMS' individuality in health care settings; (d) creating meaningful relationships for disease management and treatment, as well as building trust.
多发性硬化症（MS）是一种复杂的、终身性疾病。其影响跨越了生活的不同领域，差异很大。在瑞士，人们正在激烈讨论如何优化医疗保健质量和患者安全。为了从患者的角度提高医疗保健质量并形成更全面的视角，患者应更多地参与医疗保健管理。这项多案例研究探讨了多发性硬化症患者如何体验和描述与功能相关的障碍、促进因素和伦理相关冲突的问题。为了从全面的角度解决这个问题，使用国际功能、残疾和健康分类（ICF）的多发性硬化症核心集作为理论框架。为了探讨障碍、促进因素和相关的伦理问题，使用了不同的叙述来源进行主题分析和 ICF 编码：（a）DIPEx 访谈中的多发性硬化症转录本和（b）多发性硬化症患者的自传。确定了对日常实践和教育有意义的见解：（a）基于叙述来源理解环境情况的重要性；（b）理解个人生活状况的重要性，以及在医疗领域转换视角的能力；（c）在医疗保健环境中尊重多发性硬化症患者的个性；（d）为疾病管理和治疗建立有意义的关系，并建立信任。
