What is the Latinx Family Advisory Council at Stanford Medicine Children’s Health?

Marsha Perez: The Latinx Family Advisory Council started in March 2022. The Council is a group of six Anglo-Spanish bilingual parents who provide feedback to Packard Hospital care teams. The Latinx Family Council meets once a month with caregivers seeking feedback on how things can be improved for Hispanic patients and their families.

Our goal is to make people aware of the cultural differences of Spanish-speaking families and how this affects their care in the hospital. Council members provide suggestions to staff on how to address issues or challenges these families may face. The Latinx Family Advisory Council is here to serve families and caregivers alike – and we’re always available to provide input or suggestions.

Why was the council established?

It was important to us to involve the Spanish-speaking parents in the care at Packard. Many of our patients’ families have different cultural backgrounds. English may not be their primary language and they may not understand how things work in the United States, especially in healthcare. Even if the family has been in the US for a while, it doesn’t mean they understand the language enough to communicate with health care providers about complex medical issues. Or maybe they speak English but don’t know how to read it. For those parents, a discharge summary can be scary and they may feel embarrassed to tell their caregivers they don’t understand.

To help in situations like this, the Council has provided suggestions to providers on how to formulate open-ended questions for Spanish-speaking parents and explain discharge instructions in simple terms with more learning experience. We want providers to convey to Spanish-speaking parents that: “You’re part of the team and you can let us know what works best for you.

Are there any changes as a result of the Advisory Board meetings?

All members of the Latinx Council were deeply grateful for the opportunity to share their experiences and perspectives to help others. The parents in the Council like to give feedback and are asked: “What is a better approach?” or “What do you think about these kinds of challenges?” The Council provided input on how Spanish-speaking parents would like to receive information before being admitted to hospital. Some of our providers speak Spanish, but we have been able to bring to the fore the use of an iPad or phone for the translation of non-medical interactions. For example, I was working with a Spanish-speaking parent who wanted a glass of water and the nurse kept bringing water with ice. Where this parent grew up, ice was not used in drinking water, but she couldn’t pass that on to the nurse. So even though it wasn’t a medical issue and seemed like something simple, the language barrier affected the parents’ experience.

We also provided feedback on MyChart and telehealth visits. The technology is great, but in my parent-mentor work, I hear from families that they don’t know how to use it. It could be anything from not knowing how to use a smartphone or how to download the app to not having email. Many Spanish-speaking parents depend on family members to help them use technology. The council can share these challenges with both IS staff and healthcare providers.

What do you hope to see in the future?

I hope we increase the understanding that every Latin American culture has differences. For example, the Latinx Family Advisory Council recently spoke about how one word in Spanish can have different meanings depending on the country. One of our caregivers told a story about a word he used that meant something different in another country, and the parent was confused. We want providers to be aware of these differences.

It will take time as there are many challenges, but things are changing. The long-term goal is to provide culturally competent services to both the caregiver and patient, make tools such as MyChart easily accessible to everyone, and resolve the language access gaps that can cause delay and distress to patients and families.