Lived Experiences of Bladder and Bowel Dysfunction for People With Multiple Sclerosis and Their Providers: A Qualitative Meta-Synthesis

Bladder dysfunction and bowel dysfunction impact up to 80% of individuals with multiple sclerosis (MS). Beyond their physical effects, they can reduce quality of life and contribute to emotional distress for people with MS. Exploring the nuanced, lived experiences of people with MS who have bladder and/or bowel dysfunction is critical to better understanding these challenges. The purpose of this meta-synthesis was to answer the following research question: What are the lived experiences of bladder and bowel dysfunction for people with MS and their clinicians?

This qualitative meta-synthesis included a comprehensive literature search of 3 databases. Titles, abstracts, and full texts were reviewed by 2 reviewers. Included articles were critically appraised, and reciprocal translation was used to synthesize novel, representative themes from the primary studies.

Systematic searches yielded 3664 articles, of which 14 met the inclusion criteria. Three themes were identified: quality-of-life impacts, barriers to accessing health care (subthemes: clinician-driven access barriers, patient-driven access barriers, opportunities for facilitating access to bladder and/or bowel health care), and symptom management strategies.

Findings highlight patient embarrassment surrounding bladder and bowel symptoms, limited clinician engagement, and low awareness of intervention options from both people with MS and their clinicians. More research is needed to improve educational interventions, increase access to specialized health care, and understand the perspectives of people with MS and bladder and bowel dysfunction in differing health care systems.