For many Hispanic people with a bleeding disorder and their families, navigating the often-complex world of medical care (including insurance) in a language other than what is spoken at home can be challenging. Language barriers and cultural divides can send fear, confusion and anxiety skyrocketing.
To better understand the needs of the Hispanic bleeding disorders community, in 2015 the National Hemophilia Foundation (NHF) partnered with the Centers for Disease Control and Prevention on a series of focus groups with Hispanic families across the country.
These focus groups identified the following challenges, as well as possible solutions.
Challenge: Clear language understanding
One of the biggest hurdles to overcome is the language barrier. “When families are not very fluent (in English), a lot of what is communicated to the patient is lost. They may know some language, to communicate at work, but not the technical medical information the doctor is saying,” says Maria Santaella, RN, MSN, pediatric program nurse coordinator at the University of Miami Hemophilia Treatment Center.
“Parents have to learn themselves what it is and how their lifestyle will change,” says Felix Olaya, a bilingual education specialist at NHF. “But then, with the large Hispanic family structure, they will also have to teach Grandma and Auntie and any cousin or neighbor who may be caring for their child. Finding material that is trustworthy, easy to understand and culturally inclusive can be a real challenge.”
Solution: Go to stepsforliving.hemophilia.org/es/inicio to find trusted educational information in both Spanish and English.
Challenge: Clear cultural understanding
Communication is about more than just words and accents. “Many first-generation Hispanics come from places where the medical environment is completely different, and they’re completely lost in the way they’re talked to about science and genetic causes. A lot of times, the families are used to thinking in more spiritual ways, in terms of treatments and coping,” says Santaella.
Solution: Guides at local NHF chapters who speak Spanish are available to discuss bleeding disorders issues. Go to hemophilia.org/community-resources/chapter-directory to find the chapter nearest you.
Challenge: Not following treatment plans
Becoming familiar with the treatment schedule and feeling comfortable using needles at home can be difficult. “It can take time and practice to get used to doing this,” Olaya says.
Solution: Attend summer camp. “Each local chapter offers summer camps, and it’s really cool,” says Olaya. “Some have family camps where the whole family can go, and it really helps families to overcome anxiety. It’s great to meet others living with the same condition.” To find nearby camps, visit hemophilia.org/Community-Resources/Locate-a-Camp-Near-You.
Challenge: Isolation
It’s easy for people to wonder, “Why our family? What did we do to deserve this?” especially when there’s no family history of bleeding disorders, says Olaya. Such feelings can lead to becoming isolated from the robust community of Hispanics living with a bleeding disorder. “You can still have a normal life with a bleeding disorder,” says Olaya.
Solution: “You don’t have to broadcast on Facebook about your child’s condition to reach out and join a very supportive and welcoming community of Hispanic families living with hemophilia through NHF,” Olaya says. Families that have been living with a bleeding disorder for a while can volunteer to help support families newer to the condition. Go to HemAware en español on Facebook to connect with other families.