Disease management experiences of people with multiple sclerosis during the COVID-19 pandemic: A qualitative study

This study was conducted to determine the disease management experiences of people with multiple sclerosis (MS) during the COVID-19 pandemic. The research was conducted in a descriptive qualitative design. The study was carried out with 17 people with MS who were registered in the MS Unit of Dokuz Eylül University Hospital. The data were collected through online interviews, and a semi-structured interview form was used to collect the data. Content analysis method was used in the analysis of the data. Its reporting is based on The Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines. Two themes were reached from the data obtained as a result of examining the disease management experiences of people with Multiple Sclerosis (PwMS) during the COVID-19 pandemic. These themes are; difficulties in maintaining health and adaptation. There are sub-themes within the themes of difficulty in maintaining health and adaptation. The theme of difficulty in maintaining health; it has 4 sub-themes: inability to access health services, inability to exercise, psychosocial problems and worsening of symptoms. In the theme of adaptation; there are 5 sub-themes: applying prevention methods, regulating lifestyle, getting social support, seeing the positive side and getting a hobby. PwMS have had difficulties in managing their disease due to the failure of healthcare providers to maintain the required healthcare standards. In addition to the prohibitions and restrictions brought by the pandemic, due to the increase in the depression, anxiety and stress levels perceived by individuals with MS due to the pandemic, they could not continue to maintain the healthy lifestyle behaviors they had before the pandemic and experienced worsening in the symptoms of the disease; they applied some methods to adapt to this process.