We’ve said it before, and we’ll say it again: the Neonatal Seizure Registry (NSR) is the gold standard for integrating parental input at every step—from study design all the way to its dissemination.
Two incredible members of the NSR team—Dr. Monica Lemmon, a pediatric neurologist at Duke Health and a valued member of Hope’s Medical Advisory Board, and Natalie Field, a medical student at Duke—sat down with Hope to discuss this parent-centered approach, share exciting NSR research updates, and highlight Natalie’s recent work, which shines a light on a crucial, yet often underrecognized, aspect of research: parents’ emotional experiences and well-being after caring for a child with neonatal seizures.
Missed the live stream Q&A? No worries. We took notes, and like any good partner, we are willing to share!
… and we believe it, too!
The NSR stands out for its innovative work and its integration of parents as active collaborators at every stage of the research process. This partnership is woven into the fabric of NSR’s structure, ensuring that studies are guided by the real-world experiences and needs of families navigating neonatal seizures.
The NSR spans nine study sites nationwide, each with a dedicated parent representative. These representatives collaborate closely with community sites and advocacy groups, creating a network of voices that reflect diverse perspectives. Every month, parent partners from these communities meet to provide feedback and guidance, shaping the research from its earliest ideas to the final dissemination of findings.
At the beginning of a study, researchers consult parents to determine which questions matter most to families and how to frame these questions in a way that feels accessible and relevant. As the study progresses, parents help refine the language used, ensuring it is clear, appropriate, and sensitive to their experiences. Some parents even take on the role of coauthors, offering invaluable insights during the writing, reviewing, and editing stages.
When studies are completed, parents remain at the heart of the process, helping to share findings in ways that resonate with the community and reach those who can benefit most. This model of collaboration underscores a powerful message: that research should begin and end with the people it seeks to serve.
Dr. Monica Lemmon and Natalie Field emphasized that the NSR’s parent-centered approach is more than a framework—it’s a model for how science can evolve to be more inclusive and impactful. By asking, “What questions and outcomes really matter to families?” researchers ensure that their work is driven by the voices of those who live the reality of neonatal seizures every day.
…focusing not only on medical treatment but also on supporting families through a collaborative network of researchers, clinicians, and parent partners.
For over ten years, the NSR has produced many studies addressing critical aspects of neonatal seizures, from treatment to long-term outcomes. Here are just a few:
One central area of focus has been treatment options and safety, including studies examining the risks and benefits of early discontinuation of antiseizure medications (ASMs).
Safety of Early Discontinuation of Antiseizure Medication After Acute Symptomatic Neonatal Seizures (2021)
Notably, the NSR has also turned its attention to the mental health challenges families face. Studies have shown that parents of children with neonatal seizures are at an increased risk of experiencing symptoms of anxiety, depression, and post-traumatic stress disorder (PTSD).
Parent-Reported Mental Health Outcomes in Families of Infants with Neonatal Seizures (2020)
The registry has also explored the importance of collaboration between parents and clinicians in neonatal seizure care, aiming to improve family-centered communication and decision-making.
Parent-Clinician Partnerships in Neonatal Seizure Care (2022)
The latest NSR research, led by Natalie Field, highlights the longitudinal emotional experience and well-being of parents caring for children with neonatal seizures. Its findings identified three major themes: the joys of parenting, managing day-to-day life and challenges, and the personal burden of care. These themes were consistent across the various age ranges—newborn through age 8—but how they manifested evolved over time.
Let’s look into these details a little more thoroughly:
In the early days, parents felt a deep sense of gratitude and joy as they brought their baby home and began spending quality time together. As their children grew, parents described developing an even stronger bond, discovering their child’s unique personality, and celebrating special milestones along the way.
What was especially striking in the findings was how many parents (99%) shared positive aspects of their journey, making it the most reported theme in the study. This statistic directly reflects the study’s early parent feedback, which revealed a desire for research to balance the challenges with the joyous moments in their journeys—a perspective often overlooked in traditional medical literature, which tends to focus solely on struggles.
Parenting a child with neonatal seizures comes with its share of challenges. Parents had to juggle medical appointments, treatments, and a strong desire to meet their child’s needs. These daily responsibilities could feel overwhelming, and as their children grew, new challenges would arise. Yet, despite the stress, parents found ways to manage their routines and keep pushing forward.
However, uncertainty was a persistent theme. A significant portion of parents (over two-thirds) voiced concerns about the future during discharge, fearing unknowns like developmental outcomes and future seizures. This uncertainty lingered as children reached two years old, with 40% still expressing these concerns, and even continued into later years.
In response to parent feedback, the NSR also developed a Question Prompt List (QPL) tool to help parents navigate conversations with healthcare providers. Initially, the list included a wide range of questions, but after sharing it with families, the research team recognized that it could feel overwhelming—especially in the early stages of care. The final version was simplified to focus on the most relevant questions for parents during this critical time.
Overarching topics include:
These targeted questions help parents feel more informed and confident in navigating their child’s care. Click here for the full QPL!
Dr. Lemmon is performing ongoing research that is diving deeper into understanding how anxiety, depression, and PTSD affect parents over time—not just in the NICU but throughout their child’s journey. By gathering large-scale data on parent well-being across childhood, these studies aim to identify the biggest challenges families face and uncover opportunities for tailored, long-term support.
The next step? Designing interventions that don’t just identify problems but actively solve them. Researchers are exploring ways to build resilience, improve parent-clinician communication, and ensure families feel supported at every stage—whether that looks like increasing routine mental health screenings for those caring for medically complex children or improving their access to mental health care. And here’s the best part: parents will have a seat at the table when designing these solutions. By incorporating their lived experiences into the research process, we can develop practical, impactful interventions rooted in what families truly need.
Hope families have already made meaningful contributions to Neonatal Seizure Registry studies by completing surveys and testing tools. For those looking to get involved, the NSR website is a goldmine of resources, including ongoing studies, infographics, and published findings. Families can also stay in the loop by watching for updates from Hope’s team about how to amplify their voices within the community. Research thrives on collaboration; every parent’s input helps move the needle toward better care and brighter futures.
Dr. Lemmon gives these resources her stamp of approval (and as an essential member of our Medical Advisory board, you know they’re solid!)
To watch the full live stream of this Q&A, visit our YouTube channel below, or click on our Key Takeaways for an at-a-glance view of its highlights!
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