The current state of Spanish language resources for patients in Alabama with rare genetic disease: qualitative expert...

Patients with a rare genetic disease face unmet needs deepened by the traditional American healthcare system. Social, educational, and financial support resources help address some of these challenges; however, for patients who are Spanish speaking, the language barrier makes it more difficult to attain such resources. This compounds with already existing healthcare disparities faced by the Latino/Hispanic community. This study explores the current state of resources available for patients in Alabama who are Spanish speaking with a rare genetic disease and identify specific areas for improvement.

Eleven expert stakeholders who work with either rare genetic disease, patients who speak Spanish, or both, completed 1-hour online audio-only semi-structured interviews. Interviews focused on the current state of resources for this population and ideas for improvement. Transcripts were analyzed using reflexive thematic analysis.

A lack of sufficient access to Spanish speaking medical staff and interpreters prevents patients from accessing social support and the healthcare system. Additionally, digital or educational resources in Spanish are rarely accessible to patients. When resources are available they tend to be of high quality, but their implementation is inconsistent. This lack of accessible resources creates an undue burden for both patients and providers.