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Background: Despite growing understanding that African American patients may have a more aggressive course of multiple sclerosis (MS) and experience disparities in diagnosis and treatment, fewer studies have examined how African Americans experience MS and its effect on their lives. This study explored the experiences of African American women with MS to inform future research and practice. Methods: Face-to-face semistructured interviews were conducted with 19 African American women. Inductive content analysis was used to identify major categories and subcategories. Results: The analyses yielded three major categories: no one could believe I had MS, it is tough living with MS, and you have to keep going. Many women reported that the MS diagnosis was a surprise to them and their doctors because of the common belief that MS is a "Caucasian disease." For this reason, many women felt their diagnosis had been delayed while their physicians initially focused on other diseases considered more typical in African American individuals. Living with losses related to social and family activities, independence, and employment was especially challenging for them. Faith in God, coming to grips with the diagnosis, and health promotion behaviors were key strategies for dealing with their MS. Women also spoke of pushing forward, working through MS challenges, and taking care of themselves, thus preserving their identity as strong Black women, a culturally important construct in the African American community. Conclusions: Future research should explore the interactions of culture with coping strategies and the development of useful and valued resources and supports for African American people with MS. [ABSTRACT FROM AUTHOR]

Background: People with multiple sclerosis (MS) benefit from engaging in health promotion. Most studies have been conducted with those having relapsing-remitting MS; information about health promotion for those with progressive MS is more limited. In this study, health promotion and quality of life (QOL) for people with progressive versus nonprogressive MS were systematically examined and compared. Methods: These data are from years 21 and 22 of an ongoing longitudinal study of persons with MS. Participants were compared on demographic, psychosocial, and health promotion factors and 36-item Short Form Health Survey (SF-36) QOL subscales. Based on the conceptual framework, barriers, symptom clusters, social supports, and health promotion activities were entered into hierarchical multivariate regressions to predict selected SF-36 subscale scores separately for those with progressive versus nonprogressive MS after controlling for variance associated with years of education and MS incapacity. Results: Analyses included 72 respondents with progressive MS and 117 with nonprogressive MS. People with progressive MS reported significantly less frequent health promotion and lower scores on SF-36 physical role limitations and social functioning. Symptoms were a strong and significant predictor for all three SF-36 subscales in both groups. The explained variances in the hierarchical models differed significantly by MS course, with adjusted R2 scores ranging from 0.17 to 0.30 in progressive MS and 0.35 to 0.45 in nonprogressive MS. Conclusions: Findings underscore the importance of symptom severity in relation to health promotion and QOL in people with long-standing MS. Future research should explore additional contributors to QOL for those with progressive MS. [ABSTRACT FROM AUTHOR]