Contextualizing the MS Experience for Members of the Hispanic and Latinx Community Living with MS and the Trusted MS Experts Caring for Them
Alexis Crispino1, Yahaira Rivera Bobadilla1
1Mission Delivery, Multiple Sclerosis Association of America
Objective:
To amplify the experience of members of the Hispanic and Latinx community, MSAA convened an advisory committee comprised of experts in multiple sclerosis care who identify as members of the Hispanic and Latinx community, as well as patient advocates and their care partners.
Background:
Much of the content focus from studies, research, and education readily available today primarily reflects the experience of our population siloed down to only a very narrow group of individuals. The disparity in acknowledging the unique experiences that drive health outcomes among diverse populations such as Hispanic and Latinx people has resulted in gaps in adequately contextualizing what will be most effective for which person.
Design/Methods:
To gain a deeper understanding of how the Hispanic and Latinx community experiences and understands MS—in collaboration with Impact Education—MSAA convened two virtual Advisory Board meetings spanning nearly 8 hours with 16 participants from the MS healthcare professional and patient advocacy communities.
Results:
Group discussions and accompanying assessments described major challenges for the Hispanic and Latinx community living with MS including “misinformation, cultural barriers, language hurdles, and socio-economic limitations to affording treatment”. In terms of finding strong connections in managing MS, members reported difficulty with “finding trusted individuals that can connect with the community and conduct outreach”, as well as spreading “the knowledge that MS is not solely a Caucasian disease”.
Conclusions:
The MSAA HLB agrees continued collaborative multilingual opportunities with strategic design of information in Spanish that leverages collaboration between healthcare providers, their patients, and community organizations can help to address critical gaps in care.