Advice for Considering Culture from Elisa Aucancela
Meet Elisa! She’s personally been a family partner on two CYSHCNet research projects and partners with us through El Grupo Vida. As executive director, Elisa oversees this network of Hispanic/Latino parents.
The nonprofit was formed to provide mutual support for people with disabilities or special needs, including their parents, family, and guardians. They serve as a welcome center for asylum seekers and families in legal “gray” areas. They also provide education, training, system navigation, and so much more.
Elisa wears many hats for the nonprofit, including serving as a liaison for families and CYSHCNet researchers. Elisa has learned so much from working in this space. She shares what she’s learned to help researchers better understand the importance of cultural competency and humility, reminding us that there’s more to this work than simply translating language. It’s about effectively operating in different cultural contexts, and altering practices to reach different cultural groups.
Be aware of the subtleties of language.
“Sometimes the question researchers ask doesn’t match with the answers they get. I’ll give you an example. Here in the US, we use the words ‘mental health’ to describe psychology, counseling, social work, etc. But in Spanish, ‘mental health’ has no good translation. Therefore, when you target a Spanish-speaking family and ask them ‘do you see a mental health provider,’ they may say No. But ask them if they had an opportunity to meet with a social worker or counselor, they might say Oh, yes.”
Understand how the culture “typically” interacts with the health care system, particularly for families of CYSHCN.
“Some cultures don’t go to the doctor. They try to use their own natural way, like drinking the tea great grandma provided. One huge issue I’ve seen specifically with families who have kids with special health care needs is while their child might have insurance, the family member does not. So they will wait to get care until it’s an emergency.”
Consider how to help people who are literally in survival mode, all day, every day.
“Imagine you’re a single mom, just doing what you need to do to survive. And then somebody asks, ‘How are you?’ or ‘How’s your mental health?’ when you’re in the fire of survival mode. The women I work with might say, My mental health? I don’t know. I do what I need to survive, to take care of my kids, to work. I need to do this. I need to do that. I don’t have time to do anything else. My point is, you can have the need. You can have the depression, but you are running because you don’t have another option. In that case, how do we provide that level of support?”
Be sensitive to power dynamics within the family and culture.
“A lot of the power in minority culture comes from the collective, not the individual. So say you’re a doctor trying to target the individual, you need to remember and know that you’re not just talking to the patient. You are talking with my kids and you’re talking with auntie or grandma. Because all of us, our village, is taking care of these kids.”
Approach this space with compassion for the depth of the isolation these families may be feeling.
I’ve heard the families I work with say things like, I don’t remember the last time that I slept through the night. I’m here 24/7. And the only way that I go out, is when I need to go to the clinic, or a hospital with my child. I don’t know anybody. And it’s really hard. I cannot go even to the supermarket.
Here’s an example. We worked with a specific family who needed respite care and finally found the money to pay for it. But we were not able to find anybody who speaks Spanish and who was able to take responsibility for the needs of this child. Because he has a lot of needs, which means a lot of liability. So people we interviewed were like, No, thank you. We were shocked. We thought we had found an option, but we hadn’t. So how do we provide the support? Can we have a person who goes to the home and spends time with mom? How do we do when his family cannot be paid to take care of their kids due to their legal status?
Work with a cultural broker.
The department of education has been working with people who serve as a cultural broker to support families beyond the services of an interpreter. I’ve seen cultural brokers help in situations where connections with families are broken due to issues of trust. One example is when there is a discrepancy between a doctor and what a family member believes is best for their child. A conflict can go south quickly, and we have cases in which the doctor requests social services. But it’s not neglect—the family member just has a different perspective. This is why you need a cultural broker, to understand both sides and to sit with the family and really listen to what’s going on. You don’t need to be from that culture to be culturally competent but you do need to really engage with the family to build trust and ask the right questions.
Learn more about El Grupo Vida at elgrupovida.org.