#359 -🚶‍➡️[Life Course Series] - Can a Strength-Based Approach Transform NICU Follow-Up?

In this episode, Dr. Daphna Barbeau welcomes Dr. Shirley Russ, Senior Project Scientist for the Life Course Translational Research Network, to discuss how life course health development can reframe neonatal care and follow-up after prematurity. Drawing from her extensive work leading the Prematurity Node within the network, Dr. Russ highlights why translating research into practice at scale is essential for improving lifelong outcomes.

The conversation emphasizes moving beyond a problem-focused, deficit-based model of NICU follow-up toward a strength-based approach that recognizes resilience, family capacity, and the broader developmental ecosystem surrounding each child. Dr. Russ outlines how interventions should not only detect problems but proactively optimize development—by supporting parents’ mental health, fostering nurturing environments, and integrating community resources into care.

She also shares insights into co-designing research and interventions with families, ensuring that their lived experiences guide both priorities and solutions. Practical examples include addressing parental trauma, redesigning follow-up clinics, and viewing prematurity in the context of interconnected systems—from family and community supports to schools and policies.

This forward-looking episode challenges clinicians to rethink follow-up care as more than monitoring milestones. Instead, it presents an opportunity to partner with families and communities to build healthier, more resilient futures for children born preterm.

Transcript

Daphna Yasova Barbeau, MD
Today in the studio, I'm so fortunate to have on Dr. Shirley Russ. Dr. Russ was a clinical professor of pediatrics at Cedar Sinai Medical Center in Los Angeles, but now holds the esteemed title as the Senior Project Scientist for the Life Course Translational Research Network. Dr. Russ, thank you for being here.

Shirley Russ
Thank you, Daphna, for having me on.

Daphna Yasova Barbeau, MD
Well, we're learning a lot about life course theory. And so tell us a little bit about the Life Course Translational Research Network. What's the mission? What are some of the tasks that you guys are tackling today?

Shirley Russ
Well, what we're really trying to do is to take what are the potential benefits of a life course approach and translate it into practice in a very wide way, thinking about how do we take this knowledge that we now have about how health develops across the life course, and how do we make sure that we are influencing research, policy, and practice with all that we know? And how can we translate what we know into practice at speed and at scale? So it's all about really how do we make sure that the research that we're doing is actually benefiting the people that we're doing the research to try to help. And that's really the mission of the Life Course Translational Research Network.

Daphna Yasova Barbeau, MD
I imagine this is no small task because I mean, part of the concept of the life course is it's across a lifespan. So you must have lots of stakeholders to be working with.

Shirley Russ
Yes, we definitely do. So I'll probably tell you a little bit about the history of the translational network. And it is a very broad remit, as you say. So back in 2010, the Maternal and Child Health Bureau recognized the potential of a life course approach to really, in a sense, revolutionize our approach to child health and thinking of child health as the foundation for health across the life course, and they put out an RFP to form a Life Course Research Network, which we applied for and were successful in getting. But we started off at that point with just five researchers at UCLA with a huge interest in life course. And Neil and Myles Hoxstein had done this foundational work in Life Course Health Development, which we thought was tremendously important and had great potential. Over the next eight years, we continually had to recompete and were refunded. We grew the network from just five people to a thousand people across the U.S. who were all very interested and passionate about life course. We found that people had a desire to apply these principles to their own subspecialty area, to their own area of practice. And so we were able to do things like have a series of 50 webinars where people would apply the principles of life course to the work they were doing. We put out a couple of research agendas, and we were able to do some additional work incorporating new evidence from epigenetics, genetics, what we now understand about early developmental processes, responses to stress, and so on, and we integrated that into an updated version of the Life Course Health Development approach. Most importantly, it allowed Neil and Chris Forrest and others to develop the Handbook of Life Course Health Development. In that handbook, experts from different specialties contributed chapters, really summarizing their thoughts about how we could apply these life course principles to their topic area. One of the chapters was around prematurity, which at the time was led by Michael Msall. Then in 2018, the Bureau decided that we wanted to move from thinking about research to thinking about intervention research. How do we take what we've learned, what we know, to actually fashion interventions that can be used across the population? From 2018 to 2023, we had funding from the Maternal and Child Health Bureau to develop interventions. By this point, the network had grown to around 2000 across the U.S. We also had a core group of about 125 researchers spread over 20 different institutions. We had a number of different nodes. One of the nodes we had was the prematurity node because we knew from the beginning that prematurity is relatively common in the U.S. (over 10% of births), and if we could improve outcomes after prematurity, it would make quite an impact on population health. In 2023, after competing again for funding, we became the Life Course Translational Research Network with the broader remit of translating life course into practice across research, policy, and practice at a larger scale.

Daphna Yasova Barbeau, MD
Well, certainly we are going to be talking about the prematurity node. That's, for our listeners, a topic of definitive interest. But I want to make sure we get the full scope. So tell us what some of the other nodes look like and the goals for those arms of the program.

Shirley Russ
So the other nodes that we have at the moment are ADHD, adversity. Adversity covers a wide span of adversity, including ACEs. We're also working in the juvenile justice space, looking at transition-age youth who are emerging from incarceration—how do we best support them? One of the interesting things about that project, led by Liz Barnett at UCLA and Laura Abrams, is that we've realized that a lot of those people coming out of incarceration are themselves parents. So it's become more of an intergenerational project. Then we have a node looking at early childhood mental health. You'll notice ADHD, early childhood mental health— there’s lots of crossovers with the prematurity space. We have a family node, and we've become very interested in the idea of family health and family health development - recognizing that the health of one family member impacts the health of other family members. It's not a linear process; it's more of a recursive process, with recurring loops of family health. Then we have a school node, looking at schools as platforms for life course interventions. Children spend a lot of time at school, and we think there’s potential for interventions that can improve people’s life course and life course health. We also have some cross-cutting cores looking at things like measurement and engagement of family, youth, and communities. One of the things that our Translational Network feels is pivotal to all of our work is the strong engagement of family, youth, and communities. The interventions we're working on developing are co-developed with the people they are meant to help - whether that's families, youth, or others. This co-development is essential for creating interventions likely to work.

Daphna Yasova Barbeau, MD
I love that. So let's focus on the prematurity node and what are the interventions that you are tackling.

Shirley Russ
So in the network at the moment, one of the focuses, which we are coming up to next year, is that we roll out different pilot projects in different years. And part of the way that this node has been structured from the beginning, Neil is the PI and he felt very strongly that we wanted to have multiple nodes so people could try things that are a bit different, a bit innovative. We could have kept the funding in-house or divided it among one or two groups, but we really wanted to have a broader remit. The funding we're supplying is seed funding to generate innovation, and then we can apply for more substantive funding. In the prematurity node right now, Susan Hintz and Jonathan Litt at Stanford, who of course you know and co-led this children's special issue, are going to be looking at an intervention around PTSD in the NICU. We know that for families, the experience of the NICU can be a traumatic event. And when we think about the health development of the baby, it’s so closely connected to the health and wellbeing of the parents, which in turn affects the parents’ ability to provide the nurturing care that is such an important buffer to many challenges these infants face. As part of this more holistic approach to care, we're very focused on making sure the family's health, the parents' health, is in the best possible state. Recognizing that trauma and PTSD are part of this, Susan and Jonathan are working with colleagues at Stanford on further developing and implementing a PTSD prevention intervention.

We're also very passionate about family involvement in research around prematurity in the NICU and in follow-up after the NICU. You've spoken with Jessica DiBari, and we’re incredibly fortunate to have her as our program officer at MCHB, as she has personal experience of prematurity. That’s been amazing for the work we’ve been able to do. Latasha Rouse, who had premature triplets, has also contributed enormously to our thinking. This idea of families working alongside researchers as equal partners is why we’re moving toward what we’re calling FPAR (Family Participatory Action Research model). We want families as more active partners because they bring creative ideas, have lived experience, and have valuable knowledge to share. We’re also passionate about changing follow-up after prematurity so that the focus isn’t on detecting problems but on optimizing development from the start. It’s a shift from the medical model—it’s not just about diagnosis and treatment. How can we optimize health, optimize development, and optimize the developmental processes that are always happening as the baby grows? 

Another piece that Neil will probably discuss later is thinking about the environment surrounding the premature infant as a developmental ecosystem, with the family at the center. Then you have the extended family, friends, community, schools, preschools, and community-based organizations. In the outer layer, you have health services, educational services, policies. How can we get everything in this broader ecosystem to work together to optimize the health development of premature infants? That's kind of what we're about in a nutshell.

Daphna Yasova Barbeau, MD:
In a nutshell, you guys have been very busy! I'm so glad you are bringing up the ecosystem. That brings me right to my next question because as I'm learning about the life course theory and I, I'll disclose, I have a family full of psychologists. So my perspective on neonatology is maybe different than some of my colleagues, but I love this reframing of this individual baby as a part of their greater community and that they're with us in the NICU for a short period of time, but they are the result of all of their experiences and exposures, of which my participation is just a little component. I'm pretty sure, I'll venture a guess, that most neonatologists are not thinking about their patients in this way, but I'm hoping you can shed some light on why it's critical that even in the ICU, we share this perspective for our patients.

Shirley Russ:
Yeah, so I think, you know, when you say that you're only a small, it might be a relatively short period of time, it's actually a very important role. And I'm very much aware of, I during my training, like everybody I spent time in the NICU, you actually spent a year as a neonatal registrar. And I remember very well that environment and the immediacy of the environment and how you're constantly responding to relative crises. It's an incredibly important role. And I don't want people in the NICU to feel like, my gosh, we're asking you to do more and more and more like it's an impossible task. It's not really kind of like that. We're asking people to reimagine what is happening and to think of it more in terms of a developmental ecosystem and how can we make changes that might even be relatively small changes, but they might kind of benefit us all and help the baby's development at the same time.

So I think in terms of thinking about the ecosystem, when we think about the baby going home, we’re focused on the immediate: have we got the right equipment and the parents know what they're doing and so on? And sometimes we are not paying as much attention to how are the parents feeling? Are they feeling relaxed and confident? What's their mental health? What's their mental state? Are they in a position to provide this nurturing care? Do we need to provide any more inputs so that they can do this optimally? Have we looked at the home circumstances in terms of what is the accommodation they're going back to, are there other adults involved? And really looking at this all, not like my gosh, we're looking for problems, but also we're looking for strengths. We're looking for strengths that, you know, what can be drawn on to help this baby on their developmental journey, their health development journey over time? And are there community organizations that even in its early stage can come in and provide some useful support?

I think one of the things that we've heard a lot in our network and in our prematurity node is that while there are some babies that go straight to high-risk infant follow-up clinic based on their constellation of risks and so on, there are many babies that don't necessarily go to that follow-up. And sometimes at the time they leave the NICU, well, maybe they weren't that premature or they didn't have as many risk factors. But sometimes those babies are facing quite complex social and economic challenges that challenge the family's ability to provide perhaps optimal care, the optimal care that they'd like to give. And then sometimes those babies kind of turn up later on. And by that stage, they obviously need some intervention and they've obviously got some fairly established problems. We'd really like to change that around so that all aspects of the ecosystem are working maximally well from the beginning. So it's all about this much more preventive intervention. How do we find those, what we're calling probably multi-level interventions? Because it's not one thing, it's quite a few things. How do we determine what most needs attention and how we can provide those optimal supports?

Daphna Yasova Barbeau, MD:
Well, thank you. And thank you for mentioning the discharge process and what does that follow up look like? I would be remiss if I didn't share the title of the article that you and Dr. Halfen: “Ensuring Optimal Outcomes for Preterm Infants After NICU Discharge: A Life Course Health Development Approach to High-Risk Infant Follow-Up.”

I want to circle back to something that you touched on in highlighting the strength-based approach rather than kind of an illness or disability-based approach. And I think we struggle with that in the NICU and as we're communicating with families and as we're preparing them for discharge to go to our outpatient colleagues or we're following them up in clinic. I think even those of us who are part of follow-up clinics may still fall prey to kind of the problem-based approach. So help us understand why a strength-based approach is so valuable for families and the babies.

Shirley Russ:
Yeah. So I think, and I do completely understand because when we get in our clinical environments and we go back into medical speak and that's how we've been trained and it's helpful in many ways when we're communicating with colleagues as to what it is we're concerned about, what we're monitoring for and so on. And obviously we want to be transparent with families, but at the same time we've heard over and over and over again from families that they really do often get messages that appear gloomy and that they feel that in the end that's actually not doing them or the infant any good.

And a lot of the time we really don't know what the developmental outcome is going to be. And that's something that we've, our neonatologists in our group have also discussed quite a bit, is that not everyone gets to see how these infants actually develop over time and what they look like at five, six, seven, or even less in adulthood. And so none of us have a crystal ball. We don't know exactly what's going to happen. And we've heard from families what they really want is they want to work with the positives. They want to, they're not denying any issues, but they want to know what we can positively do to improve this. And that's more important to them than knowing about percentage risks and we might be looking out for this and we might be looking out for that. What they really want to know is what can I do in the here and now that's going to make things as good as it can possibly be? 

There are so many ways also now, I think, to find workarounds for if you have got a developmental challenge of some type. There are additional supports, there are all sorts of technology available to help us. There are different ways of doing things, there are different ways of learning, there are many types of learning supports, we've got AI coming down the pike. So I think families really want to, they want more of this kind of optimistic, forward-looking trajectory through life. And they want to also get away perhaps from a focus on milestones and academic achievement pieces to more of the whole child, things like their emotional regulation, their sense of security, communication abilities, obviously the bonding and the interaction between parent and child, their ability to regulate their sleep cycles. These are all the things that parents really want help with and they want to know how can I help get my child on the best possible path.

Daphna Yasova Barbeau, MD:
I love that. I think that's such an important thing for us to remember. I know we're getting to the end of our time together. So I'm going to ask you, think, a pretty difficult question. So if you could design the optimal NICU follow-up clinic, let's say, which admittedly for most institutions is, let's say, the first two years after discharge, what would that look like?

Shirley Russ:
Well, you know, Daphna, that's a brilliant question. I think in response to your question if you could design it, I think one of the things I've learned is that I can't design it. I can contribute, but I'm not a neonatologist. So I would need, I would gather together a few more developmental pediatricians, neonatologists, families who have been through this and I would really want to reach out to families who have children who have been through the NICU recently, in the middle term, and also many years ago, even though I know NICU care changes. As families move through the life course things occur to them that they would say, "Wouldn't it have been great if we'd had this, you know, then or this here?" So I think it's got to be a group-based design process.

I think the things we've been talking about in the node are, ideally, this starts even before the baby is born, once you know that there is a likelihood of prematurity, just preparing the family to take some of the scare factor away from the NICU so that that helps the parents, which in turn is going to help the child. I think a lot of what happens in the NICU, we do need a bit of a rethink. We want more opportunities for the parents to interact with their child. Touch is so important. These developmental processes are happening, whether we see it or not, whether we've got a way to monitor it or not. I always think that when you have a pulse oximeter, you know if something's going wrong with the oxygen, you can respond immediately. We don't have a developmental process oximeter, and we don't know how do we do that.

And then in terms of follow-up, I think we can do a much better job of partnering with a wider range of community-based organizations and resources that are available in the community that maybe we haven't thought about using in this way. And that can be almost anything from, obviously, the psychologists, social scientists, parks and recreations people. know, how do we make museums, parks more accessible for families with premature infants and speak to what they need? So it's really a whole of society approach.

Daphna Yasova Barbeau, MD:
I love that. I love that. And I'm going to end on that note, something for us all to work towards. Dr. Shirley Russ, thank you so much.