Exploring the Lived Experiences of Dysphagia in the Lives of People with Multiple Sclerosis (pwMS): A Qualitative study using Online Reddit forum

Abstract

Background: Multiple Sclerosis (MS), a chronic neurodegenerative condition affecting the central and peripheral nervous system is increasing world-wide (Haubrick et al., 2021). Dysphagia or swallowing disorder is present within 30-40% of these individuals (Barzegar et al., 2022). The unpredictable and varying nature of dysphagia causes significant morbidity and mortality leading to considerable reduction in the quality of life of pwMS (people with multiple sclerosis). Therefore, understanding the individual experiences of living with dysphagia in the light of MS is paramount to provide appropriate holistic management options. Aim: This study aims to investigate the lived expereinces of dysphagia secondary to MS as demonstrated in comments posted on online personal Reddit accounts. Methods: A qualitative phenomenological approach was adopted to analyse comments pertaining to the lived experiences of dysphagia in pwMS. Using the search term “eating OR drinking OR swallowing”, a total of 135 comments from 35 discussion threads/posts were collected from Reddit online website which was then analysed using thematic analysis. Results: 3 themes and 12 subthemes were obtained from the analysis of the Reddit comments. These were 1) Physical changes of swallowing and its impact on pwMS 2) Emotional and psychosocial impact of dysphagia on pwMS 3) Ways of managing dysphagia. Discussion: This online qualitiative study revealed physical symptoms of dysphagia is a predominent concern for pwMS and it can have tangible impact on every other aspects including emotional and social domains of life. Therefore, it is imperative for pwMS to recognise these symptoms early on in the disease course. Likewise, it is equally important to educate other multi- disciplinary team (MDT) members regarding the potencial consequences of dysphagia and the role of SLP inorder to detect dysphagia symptoms early and provide a multidisciplinary and person-centred management approach.