Understanding the Needs of Hispanic/Latino Individuals and Families Affected By MS

Background: The National MS Society gathered information and feedback from Hispanic/Latino individuals and families affected by MS to better understand their needs and to connect them to the resources and information they need to live their best lives. The outreach included Spanish-speaking focus groups and an online survey.

Objectives: The purpose of the focus group and survey was to gather feedback about the specific type of content, information and resources that would be most helpful to Hispanic/Latino individuals living with MS in order to live their best lives.

Methods: Focus groups were conducted in 6 markets across the country, including Chicago, El Paso, Los Angeles, Miami, New York, and San Antonio.  The online survey was disseminated to approximately 2,000 Hispanic/Latino individuals living with MS to seek additional feedback from the community.

Results: A total of 65 people, representing individuals with MS and their families, participated in the focus groups. 116 individuals responded to the online survey. Participants indicated that information about how to manage symptoms, research updates about MS, and understanding treatment options would be the most helpful in managing their lives with MS. Participants indicated that educational materials and resources are not readily available in Spanish.

Conclusions: From the survey outreach we learned that there are unique challenges that impact Hispanic/Latino families affected by MS as it relates to accessing information in Spanish about the disease, treatment options, and how best to manage their MS symptoms. As a result of the survey outreach the Society will drive the development and implementation of a strategic plan to address the unique challenges and to expand connections with the Hispanic/Latino community.