When Yaritza Mogollon had her first child at 35, she was looking forward to bonding with her baby through breastfeeding. She didn’t expect the challenges she would have, let alone the problems she faced with the healthcare system.
“I had difficulty having her latch,” Mogollon said.
Mogollon’s doctors first offered to send a lactation nurse to her home, but Mogollon said the lactation nurse never showed up because she was overbooked. Mogollon later tried to schedule an in-person visit at the clinic, but she once again had to reschedule.
“I was just so frustrated,” Mogollon said. “I started crying in the lobby.”
When she finally met with the lactation nurse, Mogollon said the nurse kept bringing her the bottle, despite the fact that she repeatedly stated her desire to breastfeed.
“It's frustrating because as a first-time mom,” Mogollon said, “you're telling them and expressing to them how you feel and your concerns, and then you're feeling like they're brushing it off.”
Ultimately, it came down to one key frustration.
“I was upset because I felt like I wasn't being heard,” Mogollon said.
A diagnosis came later for her daughter.
“We didn't come to know ‘til after the fact that she had a tongue tie,” she said. “It was a quick procedure. She came home the same day, and she was able to breastfeed, but it was two months after the fact.”
Mogollon learned she wasn’t alone in feeling unheard when she attended a community forum in her hometown of Hartford called “PA'LANTE: Salud sin barreras”, or health without barriers.
Not just treated. Heard and respected.
Julissa Díaz is one of seven Latinas that make up a team in the Greater Hartford area called PA’LANTE. They are working to develop priorities and interests for patient-centered research aimed at improving Latina health. They started by listening to the Latinas in their community.
“We went out knocking on doors in the Latino community to ask about the situation with clinics and hospitals, specifically what is going on, and many people had complaints, citing poor treatment and a lack of proper information,” Díaz said.
Díaz said she heard from Spanish-speaking women who either had an inadequate interpreter or didn’t have an interpreter at all. She said she also noticed women were treated differently depending on whether they had health insurance.
“I have experienced many things similar to what people in the community go through, such as issues with translations, time, and the way we are treated,” Díaz said. “We all deserve to be treated with respect.”
Being heard was the number one priority among the women they spoke with, Díaz said.
Out of the 118 Latina women ages 18 and older that PA'LANTE surveyed, 66% said their medical provider listens but only about 8% said their provider asks their opinion.
The survey also found that 61% of women with public insurance reported feeling highly involved in healthcare decisions, whereas 16% of uninsured women reported feeling like they were “not at all” involved in healthcare decision-making.
The women surveyed named four other priorities in what they are asking for from medical providers. They wanted healthcare providers who understand their language and culture, clear information about available services, flexible appointment hours that prioritize more time spent with patients, and dignified care free from discrimination.
“I felt anguish and sadness, realizing I’m not the only one, that we’re all going through something similar,” Díaz said. “It didn't feel right.”
Díaz said PA’LANTE organized the community forum to hear from more Latinas as well as healthcare providers in the area. The feedback will serve as a roadmap for more patient-centered clinical research that will aid in improving healthcare outcomes.
“I wanted this meeting to be heard by the doctors and physicians,” she said. “I wanted our voices to be raised.”
What the community needs
At the community forum, Angelika Matics shared how she didn’t feel an issue regarding masses in her thyroid was being investigated thoroughly by her healthcare providers.
“It was always like, ‘Everything is fine with you. You seem to be surviving with it,’” Matics said. “I just feel like I went through a lot of years for them to actually start digging.”
The community forum was an eye-opening experience for Matics.
“Sometimes you need to highlight it to be like, ‘Oh wait, I went through something similar like that’. I didn't know how to name it because I've been through it so much in my life that at that point it's normal,” Matics said. “We're so used to it, but in reality, it's not normal.”
Seeing stories like these resonate with others at the forum also provided insight for Latasha Raineault, the Health Equity Integration Manager for Hartford HealthCare.
“Hearing the voices and hearing the stories really helps me understand more about what the community needs, and helps inform the decisions that I get to make in my work each day,” Raineault said.
Raineault works with processing teams to ensure patients are being well taken care of across their clinical and community engagement divisions.
She said they’re seeing health literacy as a major concern in their own community assessments, which was echoed in the forum given the language barrier and lack of clear information about services that community members shared.
“One of the things we're looking at is how can we improve how well we, as a system, communicate?” Raineault said. “How do we challenge ourselves to get better at that?”
Local community member Ellie Joya said Latinos also need to challenge themselves to help others while better communication systems are put in place.
Joya said she often stays in hospitals, clinics, or pharmacies after her own appointments to help interpret for Spanish speakers who are struggling.
“They usually say, ‘I'm sorry, I don't speak Spanish,’” Joya said about staff members. “Sometimes they’re people who I realize actually do speak Spanish, but they simply don't want to speak it, or they are people who just don't want to help in any other way.”
Joya said sometimes even Latinos fail to support one another in these spaces.
“That shouldn't be the case,” Joya said. “It doesn't matter which Latin American country we come from. What matters is if we have the ability and the goodwill, we could do it.”
Learn more
The PA’LANTE (Patient Action Leaders Advancing Novel, Transformative, Equitable health care) team is working with the Hispanic Health Council and the UConn Health Disparities Institute. Their efforts are being funded by the Patient-Centered Outcomes Research Institute.
For the uninsured, you can find community health centers that offer low-cost health care in Connecticut through the federal Health Resources and Services Administration (HRSA) Data Warehouse.
211 Connecticut also offers a listing of community clinics across the state, many of which serve residents that do not have health insurance.
Hartford HealthCare Neighborhood Health provides care to communities across Connecticut through mobile clinics. Insurance is accepted but not required.
Visit Connecticut Public’s Latino Communities Resource Map to find Latino-serving organizations across Connecticut that offer health services.
