Qualitative Insights into the Diagnosis, Treatment, and Socioeconomic and Psychological Challenges of Patients with Multiple Sclerosis in a Turkish Public Hospital

INTRODUCTION: Objective of the study is to qualitatively evaluate challenges multiple sclerosis (MS) patients faced during diagnosis, treatment, and social life.
METHODS: Population of our qualitative study consisted MS patients with expanded disability status scale score ≤5 (19-50 years of age) who were admitted to a public university hospital neurology department. Semi-structured question guide were applied via in-depth face-to-face interviews. Interviews wereaudio-recorded after permission. Twelve participants agreed to participate voluntarily, the recordings were transcribed, thematic analysis was conducted.
RESULTS: “Attitude of family members and social circle”, “problems came across” and “worries and coping mechanisms” were the most significant themes. Participants had anxiety after diagnosis because of fear of death, probabilityof losing functions and having no clue about what MS willbring in the future. Their families started to act more sensitively and with understanding after the diagnosis. While this situation was welcomed by some of the participants, some perceived this situation negatively a triggering factor for their feeling of insufficiency. Participants were exposed to stigma. One participant narrated he faced stigmatization due to his gait. Their educational lifeadversely affected. Participants faced situations such as not being hired or termination of employment. Probability of attacks to ocur at work could become an obstacle. Some participants stated it would be difficult to carry their responsibilities due to MS and start a family, so they would have difficulties in establishing romantic relationships. Some emphasized the disease would not cause a problem, but their partners’ approach to MS was important. They were worried that their families would experience sadness and anxiety, that they would not be able to support their spouses and children if their disease progressed, they were also worried about risk of transmitting MS to their children. They developed coping strategiessuch as avoidance, religion, self-soothing.
DISCUSSION AND CONCLUSION: Participants’ knowledge about MS is limited. Families have a supportive attitude towards patients and takes teps to make participants’ lives easier. Studies developing scales such as quantitatively measuring stigma or perceived empathy in MS patients can be recommended.