Collaborative Intervention: Empowered Patients and Parents Make a Difference

When Alejandra Aguilar was pregnant, she got the shock of a lifetime. Toward the end of her second trimester, she learned something was out of the ordinary.

“The tech said, ‘You’re gonna have a boy,’” she recalls. “Then she kind of stopped and said, ‘I think you have twins!’ All I could do was laugh at the irony of it because I was wishing inside that I wanted a girl, and then she told me the other baby could be a girl. To me, it was like I spoke it into existence.”

Aguilar’s doctor sent her to a clinic to check for any complications with the babies. That’s when she got the second shock of her pregnancy: She found out her son would be born with a heart condition.

“At the time, they weren’t exactly sure what it was,” Aguilar says. “At first, it’s a shock, and you go through a blame state, like, ‘What did I do? Did I do something in my pregnancy?’ You go through this phase of guilt.”

It wasn’t until Aguilar was in labor that she found out her son, Rafael, would be born with congenital heart disease (CHD) as well as Goldenhar Syndrome, which affects the development of the face and skull.

“I was in shock. Not only was I already in labor at the moment they gave me the news, my brain was half processing the information. And then I was in pain as well, so that didn’t help in my situation,” Aguilar says.

After delivery, heart surgery and now about eight years of parenting Rafael, Aguilar is no doubt an expert in how to navigate having a child with CHD. So, when she was approached by Rafael’s doctor to participate in a new research study that would help other parents going through the same thing, Aguilar was happy to help.

“I think it’s a great way to not only heal yourself by talking through your experience but also help other parents feel like they’re not alone with what they go through,” Aguilar says.

The Study

Leading the study is Dr. Erica Sood, a pediatric psychologist at the Nemours Cardiac Center at Nemours Children’s Hospital, Delaware in Wilmington.

“My research overall focuses on the experiences and needs of families of children with congenital heart disease,” Dr. Sood says. “We have partnered with parents to identify what their needs are, what their preferences are and how we can best support families.”

Dr. Sood and her research team worked across eight different children’s hospitals to identify clinicians and parent partners who had received a prenatal diagnosis of CHD within the last five years. They wanted to hear from these parents, who already had their babies, about what support they would have liked and what would have been helpful to them when they got the diagnosis.

“We learned parents really want formal support across stages of care, including at the time of diagnosis, during hospital stays and then after hospital discharge,” Dr. Sood says. “They were learning a lot about the diagnosis from a medical and surgical perspective but not as much support in terms of mental health.”

Parents told the researchers they needed to work with families to accomplish four main goals: reduce distress and social isolation, and increase parenting self-efficacy and hope.

Reducing barriers to research participation was important to the study. Dr. Sood improved access by providing parents a way to respond to questions on their cell phones so they didn’t have to travel to their care centers to participate.

Once the four goals were identified, the research team worked again with parents to understand how and when to deliver intervention methods.

“Since then, we developed a program called HeartPrep, and it’s being tested now at Nemours,” says Dr. Sood.

Using the Nemours app parents already access as part of their child’s regular course of care, a team built a custom HeartPrep dashboard for parents to access educational links, videos from other parents talking about their similar experiences, the Mended Little Hearts HeartGuide® and links to other trusted resources.

“The idea is that by providing this kind of support during pregnancy after a prenatal diagnosis of CHD, we can improve maternal mental health during the pregnancy.” Dr. Sood says.

The next step for the program is to determine if improving maternal mental health during the pregnancy can also improve long-term outcomes for families and the children themselves.

“What’s important is having parents be partners in the design and development of the intervention,” Dr. Sood says. “They’re the ones who can help us under- stand not only what’s going to work but also how it’s being delivered so it can be accessed by diverse families.”

Alejandra Aguilar helped tremendously with the accessibility to diverse families by creating both English and Spanish language videos for parents to watch and learn from.

“That language barrier can be very stressful,” Aguilar says. “[It’s hard] to include yourself in stuff like this or get help because you don’t know how to ask or you don’t know if there will be resources to translate for you. So, you kind of just hide in a corner.” Many parents who were the first to test out HeartPrep have recently had their babies and are now reviewing improvements to the custom dashboard and providing feedback.

“They’re going back to look at materials being developed and saying ‘Yes, this is helpful, you missed this, or this isn’t really representative of the experience,’” Dr. Sood says.

Inside The Study

Did you know that as many as 80% of parents of children with congenital heart disease (CHD) experience post-traumatic stress symptoms (PTSS) that influence family and child well-being? In order to prevent or reduce PTSS, parents of children with CHD report the need for early, family-based psychosocial interventions at the beginning of diagnosis. But what can and should these interventions look like?

That’s what the researchers behind the study “Co-Production of a Family-Based Psychosocial Intervention for Prenatally Diagnosed CHD Using Crowdsourcing” wanted to learn.

Rather than design a program and hope that it meets the needs of CHD families, researchers got these families involved at the beginning so they could build a program that’s targeted to their needs.

This process began with a multi- disciplinary team of cardiologists, psychologists, neonatologists and nurses who recruited parent partners to the study. Then, using crowdsourcing (the process of generating ideas, solving problems and producing results by soliciting contributions from a large group of people, typically via an online community), researchers co-produced a prenatal, family-based psychosocial intervention with parents of children with CHD. They incorporated participants from eight pediatric health systems, including families with diverse ethnic and social backgrounds.

These participants were composed of 41 parents (including 11 fathers, 17 racial/ethnic minorities and six Spanish-speaking families) of children 5 years old or younger who had received a prenatal CHD diagnosis and underwent cardiac surgery with cardio-pulmonary bypass as an infant.

Parents reported that they wanted an intervention that can help them feel less emotionally distressed and socially isolated while helping them be more informed, prepared and hopeful regarding their child’s medical diagnoses.

Additionally, they wanted an intervention that enhanced informational and emotional support through a multi-component, flexible menu of options. Desired actions included mental health support, formalized peer support, educational tools, trusted websites and classes for parents expecting a baby with CHD.

An interesting finding was that the experiences and support available to the Spanish-speaking parents differed substantially from what English-speaking parents experienced, highlighting the importance of a tailored, culturally sensitive intervention.

The researchers have used the findings to build the HeartPrep app, which they will continue testing and refining through this ongoing community-engaged study.

Not only has this project highlighted the utility and feasibility of co-producing interventions with diverse parents of children with CHD and a multidisciplinary team of collaborators, but it also identified crowdsourcing as a useful method to incorporate parents into the design of a psychosocial intervention.

It’s exciting to see the results of this study so far, and hopefully it will be a foundation other researchers can use to develop additional collaborative interventions to further benefit children who have CHD and their families.

The Results So Far

Dr. Sood says she was surprised to find that 90% of expectant mothers who were approached about the study agreed to participate and, out of that 90%, 80% of them completed the intervention. “Pregnancy is the window of opportunity. Parents are in planning mode and they know they need all the support they can get to prepare for this experience,” Dr. Sood says. “Once the baby is born, there’s more of a separation. If you have a baby in the hospital, it’s really hard to take time away to participate in these sessions. You’ve already got a lot going on.”

Dr. Sood is also looking at ways to include videos in more languages so they can introduce even more families to HeartPrep. She’s also incorporating valuable feedback from parents about what they’d like to see included in the technology.

“We didn’t include the role of embracing the heart condition,” Dr. Sood says. “Parents were able to give us advice like milestone cards, taking pictures with the baby in the hospital during milestone moments like having their chest tube removed or having cardiac surgery.”

Dr. Sood would love to see formal sup- port like HeartPrep for families at every stage of CHD. She also recommends anyone dealing with any type of health condition to get involved by asking your local care center what support is available.

“Even if the center doesn’t have something, being asked by patients and families is an important way to motivate that to happen,” says Dr. Sood.

“If providers don’t know this is something patients and fam- ilies see as a gap, then they’re less likely to invest resources into it.”

Rafael and his twin sister Alma are now 8 years old. Alejandra Aguilar keeps busy with not only the twins but also her 17-year-old son and nearly 2-year-old baby boy.

Her advice for parents going through a similar diagnosis is to stay in com- munication with the doctors and focus as best you can on having a healthy pregnancy.

“I know it is heartbreaking and stressful because you don’t know what’s going to lie ahead, but don’t look at it like that’s the end of the tunnel,” Aguilar says. “Good vibes and love push mountains. It gives you the hope that it’s going to be okay.”

Looking at what the study has accomplished so far, Dr. Sood knows the collaboration has made all the difference. “Had we not involved parents in the design of the intervention, it would have looked a lot different and been a lot less successful. So that is always my take home.”