First Insights into Barriers and Facilitators from the Perspective of Persons with Multiple Sclerosis: A Multiple Case Study.

Abstract

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.