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Explaining the individual challenges of women affected by neuromyelitis optica and multiple sclerosis: A comparative
Maryam Shabany1, Saeideh Ayoubi2, Abdorreza Naser Moghadasi2
1Brain and Spinal Cord Injury Research Center, Neuroscience Institute, Tehran University of Medical Sciences, Tehran, Iran; Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, Iran.
Introduction:
Multiple Sclerosis (MS) and Neuro-Myelitis Optica spectrum disorder (NMOSD) are an autoimmune condition. Both of them have unexpected and acute relapses. The aim of this qualitative study was explaining the individual problems experienced of women affected by NMOSD and MS.
Method:
Sixteen NMOSD patients and eighteen MS patients completed a face to face deep semi-structured interview. Participants were recruited from the MS ward in Sina hospital. After typing the interview, the data were analyzed using conventional content analysis, as recommended by Graneheim and Lundman (2005). Data analysis is managed with MAXQDA2018 software.
Results:
In this study, a common theme for both disease groups was identified as "challenges arising from personal problems". The categories are named after each other and have many similarities, which in the NMOSD group include four categories including: "From uncertainty to the perception of threat", "Living with limitations", "Active coping until normalization" and "Facilitators of personal problems" appeared. In the group of patients with MS, five categories emerged: "perceived threat", living at a bottleneck, trying to deal with negative experiences, "facilitators of personal problems" and "problems related to physical rehabilitation".
Conclusion:
This qualitative study showed that the individual problems of the two groups of NMOSD and MS patients are somewhat similar. Also in the present study, people with MS need longer-term rehabilitation care than people with NMOSD, which should be considered and examined, a need that was less seen in people with NMOSD. The unpredictability of relapse in NMOSD and MS can have a profound effect on the daily lives of these people. Therefore, knowing the health and life problems of patients with NMOSD/MS can help health care teams to improve the quality of patient care.
