Cook Children’s Hispanic Family Advisory Council Connects, Collaborates and Elevates the Patient Experience
By Sydney Hanes
Having a child in the hospital is tough on any family, but imagine navigating a hospital admission if English isn’t your first language. That’s the case for many families at Cook Children’s.
To help in situations like this, a group of parents and Cook Children’s employees formed the Hispanic Family Advisory Council (HFAC) to advocate for Hispanic families, identify gaps in family centered, culturally congruent care experiences and empower Spanish-speaking parents to be partners in the care of their children.
Hispanic Family Advisory Council (HFAC)
The Cook Children’s HFAC, which started in 2016, works to ensure our Hispanic patients and families experience the highest quality health care possible.
The HFAC meets once a month to share perspectives on their Cook Children’s experiences, partner with staff to implement suggested changes and provide general feedback on how to make care better for Hispanic patients and their families. The group serves families and care teams as it works to help raise awareness of how cultural differences affect families’ care in the medical center.
The HFAC members act as a resource to guide culturally sensitive services and interactions at Cook Children’s. Employees from various departments attend the HFAC’s meetings to gain feedback on system-wide initiatives and how they impact Hispanic families.
Two councilmembers, Lucía Nájera-Gartman and Lizdelia Piñon, Ed.D., share their families’ journeys to connect with and advocate for Spanish-speaking families admitted to the medical center.
Lucía Nájera-Gartman is a Cook Children’s parent mentor, parent advisor, HFAC member and mother of two children – Danielle, 29, and Dennis, 24. Her family is Mexican-American and her children hold dual citizenships from México and the USA.
Her daughter, Danielle, has Lennox-Gastaut syndrome, a severe type of epilepsy that develops in young children and often leads to life-long disability. She received care in Mexico until she was 10 years old and began care at Cook Children’s in 2005 when her family moved to the U.S. Their health care experience was different from that which they received in Mexico.
“I had to come here and learn everything from scratch, which is the case for a ton of families,” she said. “It’s an extremely complex health care system that you have to learn, especially if you have a child with complex care needs.”
One of the biggest differences Lucía noticed at Cook Children’s was the focus on family-centered care. In 2010, Danielle was admitted to the medical center at the same time Lucía’s ex-husband was in a plane crash. The two family members were admitted to Intensive Care Units across town from one another.
“I noticed how the Cook Children’s staff took the situation into consideration when they were talking to me,” Lucía said. “They would ask, ‘Are you eating?’ ‘Are you resting?’ They knew I was running between two hospitals. And it immediately made sense to me. They were not only focusing on my daughter, which is great, but they were also thinking of all the other things happening and affecting my family. To me, that was just huge.”
When Danielle was discharged, she went home with a new set of needs, including a wheelchair and in-home medical equipment. Lucía said she hadn’t known those resources would be provided.
“I had no idea all of this was available,” she said. “I was learning so many new things. I think that’s how it goes in general for everyone, but if you come from a different country, you have a different set of expectations. I didn’t know I’d be receiving so much help. ”
That experience inspired Lucía to volunteer as a parent mentor and to join the Neurosciences Family Advisory Council. Lucía connected with families who were being cared for in the Neurosciences department.
Soon after that, she met Vicki Kelley, director of family engagement at Cook Children’s. They recognized the need for a council dedicated to Spanish-speaking/Hispanic families and eventually helped to create the Hispanic Family Advisory Council.
Although her daughter has aged out of Cook Children’s Health Care System, Lucía returns to the medical center every week as a Parents As Partners volunteer to visit parents whose children are hospitalized. These visits are more than a social drop in. They are valued, purposeful opportunities to engage with and support Spanish-speaking patient families. Parents’ faces light up when they meet her because they find they have so much in common.
“I’ve met incredible parents,” she said. “It’s very easy for me to connect with them because I speak the same language and often use many of the expressions that are common within our culture. I tell them I’m a mom who has gone through very similar situations. That usually leads to very open and trustworthy conversations.”
Connections Lucía makes often result in some form of action, such as getting a parent a blanket, informing the family about how to get a food voucher or referring a family member to a social worker to arrange transportation. She makes a point to encourage each parent to place value in self-care.
“Parents can only take care of their children if they take care of themselves,” she said. “So I tell the parents that if they are strong and feel supported, they’re going to be better supporters of their children.”
Lucia’s parent mentor contacts often also result in changes that benefit many patients and families. She is able to gather information regarding parents’ concerns and share with the HFAC. One example of information that brought about meaningful change was the expansion of Camelot Court’s menu to include cultural-related food options.
Lizdelia Piñon, Ed.D., is a HFAC member and mother of four children. Her 11-year-old triplets, Santiago, Frida and Felícita, were born at 25 weeks gestation, each weighing about one pound. They spent between 99 and 115 days in an Illinois Neonatal Intensive Care Unit.
When the triplets were six months old, the Piñon family established their care at Cook Children’s. They see multiple specialists in the Dodson Specialty Clinics.
“My kids are half-Mexican and half-Puerto Rican,” Liz said. “I tell them being Hispanic is our superpower! We have all these different things that make us unique and very special. We bring a different set of needs to the hospital.”
Kelley connected Liz with Lucia and the HFAC, and through the years, Liz has provided feedback about her family’s experiences to initiate positive change.
Liz and the HFAC have added cultural considerations and perspectives in many areas. Signage across the medical center has improved. The new P1 garage created for the Dodson Specialty Clinics has van-accessible spaces and wide elevators to accommodate wheelchairs and strollers. More images of Hispanic children hang on the walls. Departments within the Medical Center have a greater awareness of the importance of hiring bilingual staff.
Councilmembers work on a variety of projects to support Hispanic families at Cook Children’s. Liz said one of the council’s biggest events is a Hispanic resource fair, which will take place on Oct. 7, 2023. At the fair, bilingual staff and volunteers will share information about services offered at Cook Children’s. Community resource representatives will attend and provide information for staff and families.
“One big concern that we brought up is that there are services here that our Hispanic families may not know about,” she said. “We encourage all Spanish-speaking families to attend. This should be where our families who need care come to get the services they need, regardless of their status or language.”
“I’m grateful and I love being an advocate for all of our families – our Hispanic families and our special needs families,” she said. “I’m always fighting for the needs of all our kids! I wanted Cook Children’s to be even more inclusive of all our families who come visit. The Dodson Specialty Clinics building now has a companion care restroom large enough to fit a wheelchair and multiple children. These restrooms are the result of advocacy by dedicated parents whose needs for their children were listened to by decision-makers at Cook Children’s.”
The Cook Children’s HFAC: A Success Story
The Cook Children’s HFAC does an incredible job of highlighting the Hispanic perspective to bridge the gap between patients’ and families’ viewpoints and experiences and organizational decision-making.
Lucía and Liz agree that the council is so successful because each member has joined with the intention of learning about the Hispanic culture. They also praise their leader, Kelley, who they say opens doors for them.
“Vicki is a great leader who believes in us,” Lucía said. “She has introduced us to so many people. She trusts us. That allows us to really speak our minds and then work together to find solutions.”
Cook Children’s employees seek the council’s knowledge and perspective with an open mind and a willingness to improve practices.
In addition to providing insight internally, the FAC has traveled to conferences across the country to give presentations about how they got started and how they function. The HFAC emphasized the importance of institutions partnering with parents to learn about other cultures.
If you’re interested in making an impact by joining the Cook Children’s HFAC, or know of a parent from the Hispanic community whose child is a patient of CCHCS and would be interested in serving on the HFAC, please reach out to the Parents As Partners coordinator, Natalie Dorsey (Natalie.Dorsey@cookchildrens.org).
A Special Thank You
We are so grateful for each member of the Cook Children’s HFAC. Each member’s efforts have created enormous benefits for programs, other families, caregivers and staff, and especially the babies, children and teens who experience care at Cook Children’s.
Lucía Nájera-Gartman, Councilmember
Lizdelia Piñón Ed.D., Councilmember
Vicki Kelley, MS, CCLS, Director of Family Engagement
Anylu NerioGarza, Manager of Language Services
Jennifer Stephen, Ph.D., RN, CPN, Education Coordinator
Jan Crockett, Content Strategist
Anu Partap M.D., M.P.H., Physician Director of Health Equity