A pilot intervention is helping Latinx families care for their children with cancer.
Corazones Unidos Por Una Vida (Hearts United for Life) is a prototype program of support for Latinx families with children who are undergoing cancer treatment at Children’s Hospital of Orange County. It is designed and driven by Associate Professor Michelle Fortier, a clinical psychologist and pediatric pain expert at the Sue & Bill Gross School of Nursing and UCI Center on Stress and Health.
Fortier’s career has always focused on children, but she discovered her pediatric specialty as a post-doctoral fellow at the Mayo Clinic’s dedicated pain center in Minneapolis. “Patients would come in completely not functioning,” she recounts. “With a team approach to pain rehab, we saw people come alive. It was very rewarding. I really wanted to be in the field of pain.”
Pediatric pain is of particular significance to health equity because, as Fortier explains, “Poorly managed pain in children can have a cascade of negative lifelong effects. It leads to the increased likelihood of poor pain experiences for that person in the future. They get very distressed at the prospect of pain and may try to avoid healthcare. Adults who have had experience of poorly managed pain during childhood report avoiding routine healthcare visits, immunization, health checks… there’s a whole host of effects that lead to reduced quality of life.”
Fortier joined UCI and Children’s Healthcare Orange County (CHOC) in 2008, working in pediatric perioperative care and subsequently, pediatric oncology. Already keenly attuned to the individual nature of pain – “There’s so much context that impacts the experience of pain, and how we handle it” – Fortier became increasingly aware that advice from healthcare professionals was not proving effective for patients in every cultural context: specifically, those from Latinx families.
“Partnering with the community is a consistent thread throughout my research,” she continues. “For that to be effective, you have to ask yourself, ‘Are we asking questions that are relevant to the community?’ When we work with our Spanish-speaking community, I learned that I was asking the wrong questions.”
In a study of children recovering from tonsillectomies, for example, “We saw that Spanish speaking children had poorly managed pain, were not given analgesics by parents… there were misunderstandings. We needed to understand what drives these disparities. And I wanted to translate these findings to cancer pain.”
Receiving cancer treatment as an outpatient and recovering at home is generally “great for quality of life,” says Fortier, “but suddenly we shifted all this pain management responsibility onto parents, but we didn’t do anything to help them with it. Parents were undertreating pain at home. People don’t understand that the emphasis is on pain prevention, not pain treatment. If you don’t prevent pain, you’re chasing it and it’s really difficult to manage.”
It was her search for the right questions that led, eventually, to Corazones Unidos Por Una Vida. “I came in thinking it was going to be pain-focused,” says Fortier, “but it’s a family wellbeing intervention. It’s about health literacy: empowering them to get the information they need in culturally appropriate ways.”
These ways included exchanging information in group settings rather than one-to-one; involving whole families and professionals in designated “question and answer” sessions; and developing a “beautiful brochure” that consolidates and clarifies (in Spanish) the overwhelming quantity of information traditionally presented to the families of children diagnosed with cancer – the “big binder” that usually, says Fortier, “…goes home with them and gathers dust – they don’t even open it.”
Alex’s Lemonade Stand Foundation for Childhood Cancer provided funding that enabled Fortier, her team and their community partners – the Corazones (Hearts), as the Spanish speaking families involved have come to be called – to develop the 12-session intervention and associated materials. Due to Covid, planned in-person sessions had to take place over Zoom, which Fortier feared wouldn’t work at all but luckily, “worked beautifully.”
Twenty families will have taken part by the time the pilot is complete, and the results are inspiring. Participants are completely committed to helping and supporting new families coming in after a cancer diagnosis. This has included – in one case – a mother who sadly lost her child during treatment. “I thought for sure she would not continue her work with us, but she did. Their motivation and dedication to this work is incredible – they said, ‘We can see that this is important and we want to do it.’ It’s so important to them to give.”
“Quite honestly, it’s the most meaningful work I think I’ve ever done,” Fortier states. “Almost every day we get some piece of feedback from the hospital or the families that shows us how this is making a difference.”
Fortier – who has since been selected as a 2022 Sojourns Scholar Leader by the Cambia Foundation – is now researching how to broaden uptake of all palliative care services. Her goal is to develop, “a culturally appropriate palliative care model for families affected by childhood cancer. There’s a taboo in the general population that affects uptake of palliative services – more so in the Spanish-speaking community.
“A survey by the American Academy of Pediatrics showed that children were not accessing palliative care services at the same rate as adults, and they put in a lot of effort to improve that. This led to more children accessing palliative care – except in the Latinx community. We had to understand what we can do to address that.”
As ever, Fortier is determined that the best possible quality of life should be available to all children, from every community and at every stage of their treatment.
“We need to shift the way we think and talk about palliative care,” she declares. “There are widespread misunderstandings about palliative care – it’s not just end of life. All my work comes under the umbrella of improving quality of life. How do we better develop more tailored approaches to symptom management? We know it’s not ‘one size fits all.’”