“It Shapes My Days and My Nights:” The 24/7 Biopsychosocial Experience of Living with Multiple Sclerosis: A Qualitative Study

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ÖZKUTLU Ö., AKIN ALTINCI E., ÜNLÜER N. Ö.

Journal of Multiple Sclerosis Research, cilt.6, sa.1, ss.62-70, 2026 (Scopus)

Özet

Objective: This study was designed using a qualitative approach to explore the 24/7 experiences of patients with multiple sclerosis (MS). Materials and Methods: Using purposeful maximum variation sampling, 17 patients with MS who met the 2017 McDonald criteria were included in the study. Data were collected between May and November 2024 using a semi structured interview form developed based on expert opinions; the interviews were audio-recorded and transcribed. Data analysis was performed using MAXQDA 2024 software, using Braun and Clarke’s 6-phase thematic analysis framework. Results: Five major themes regarding the 24/7 experiences of patients with MS were identified in our study: 1. diagnosis and acceptance process; 2. biopsychosocial effects of MS; 3. effects on family, marriage, and parenting roles; 4. sleep experiences and the psychosocial dimension of sleep; and 5. ways of coping with difficulties and problems encountered. Conclusion: This qualitative study demonstrated that sleep changes were fundamentally linked to the biopsychosocial dimensions of the disease. Patients described sleep as both restorative and an emotional escape, noting that sleep disturbances led to fatigue, irritability, and reduced coping capacity. Beyond physiological causes, poor sleep may reflect a broader sense of loss of control and uncertainty associated with living with MS.