Identifying Barriers to Self-advocacy in Women With Multiple Sclerosis in Iran: A Qualitative Study

Abstract

Objective: Chronic Multiple Sclerosis (MS) often occurs in middle-aged people, who are supposed to take their most important roles in the family and community and thus affect their self-advocacy. This study aimed to identify the barriers to self-advocacy in women with MS. Materials & Methods: This study was conducted using a qualitative content analysis method. The participants were 10 female members of the MS Association of Khuzestan Province of Iran aged 30-40 years with different educational levels, marital status, and occupations. They were selected using a purposive sampling method. The study data were collected through semi-structured interviews and continued until data saturation from June to November 2019. The content analysis was performed using Lundman and Graneheim’s qualitative content analysis method with an inductive approach conducted continuously and simultaneously with data collection. To evaluate the validity and reliability of qualitative data, we used Lincoln and Guba criteria (credibility, dependability, conformability, and transferability). Results: The data analysis revealed 900 codes, 21 subcategories, and 6 themes of family barriers, medical barriers, job-related barriers, environmental barriers, sociocultural barriers, and psychological barriers. Conclusion: Women with MS face a variety of barriers to self-advocacy; most of them are related to family, environment, and society, in addition to personal barriers. Social support and the availability of sufficient and appropriate information about MS can play an important role in confronting these women with mentioned barriers and realizing their self-advocacy.

Keywords

• multiple sclerosis
• self-advocacy
• women
• qualitative content analysis