Experiences of African American Women with Multiple Sclerosis

Abstract

Background: Despite growing understanding that African-Americans 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 impact on their lives. This study explored the experience of African American women living with MS in order to inform future research and practice. Methods: Face-to face semi-structured interviews were conducted with 19 African-American women. Inductive content analysis was used to identify major categories and sub-categories. Results: The analyses yielded three major categories: No one could believe I had MS; It's 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-Americans. 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-Americans with MS.

Health Disparities, Inequities, and Social Determinants of Health in Multiple Sclerosis and Related Disorders in the US

“…We found 10 studies supporting that SDOH disproportionately impacts Black and Hispanic and Latinx patients in MS outcomes, health care utilization, health behaviors, and lived experience with MS (Table 2; Figure 1B). We found no studies specific to SDOH that pertained to social and community context.…”

“…A 2020 qualitative study of 19 Black women with MS corroborates faith and spirituality are important to their MS management . In addition, they felt health care professionals were reluctant to consider an MS diagnosis …”

“…A 2015 qualitative study of 30 patients found supernatural forces were more frequently reported among Caribbean Black individuals compared with White individuals who more often reported scientific explanations when developing MS . A 2020 qualitative study of 19 Black women with MS corroborates faith and spirituality are important to their MS management . In addition, they felt health care professionals were reluctant to consider an MS diagnosis …”

Enhancing diversity of clinical trial populations in multiple sclerosis

“… 9 A sample of African American women with MS reported their diagnoses had been delayed due to misbeliefs by physicians about the risk of MS in their racial group. 10 Less is known about the influence of race and ethnicity outside North America; half of Organisation for Economic Cooperation and Development countries do not routinely collect racial or ethnic identity data, and collection of such data is considered sensitive in Europe. 11 Among people with MS, lower as compared to higher area-level socioeconomic status (SES) is associated with increased hospitalization rates, 12 greater disability progression, 13 and increased mortality.…”