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Dental Health and Disparities Research Update with Rachyl Adams

February 19th, 2025  | Advocacy  | HIE Education  | ORAL HEALTH  | Research  | Resources

 

Good oral health is about so much more than just a bright smile—it’s tied to nutrition, speech, overall health, and even quality of life. Yet, many families with medically complex children face an uphill battle when it comes to dental care: from finding a dentist who understands their unique challenges to managing sensory sensitivities, oral motor delays, and the impact of medications on dental health, the obstacles can feel endless.

And when those challenges make dental care harder to access, the consequences go beyond cavities; poor oral health can lead to pain, difficulty eating, and even more serious medical complications later on. So why is dental care often overlooked for medically complex kids? And what can we do to change that?

Rachyl Adams, DMD Candidate at Boston University Henry M. Goldman School of Dental Medicine, met with Hope for HIE to discuss her team’s survey findings on dental disparities among children with HIE and how caregiver input is shaping the future of research. Under the leadership of Dr. Matthew Mara, DDS (and fellow HIE dad), Rachyl has been actively working to highlight these challenges and push for meaningful change in dental care for medically complex kids.

Missed the live Q&A? No worries. Like any good partner, we took notes and are willing to share!

About a year ago, Dr. Matt Mara highlighted a critical issue—dental health is often an afterthought in conversations about medically complex care. He and many of his students from Boston University, Rachyl included, recognized a major gap in the literature. While families of children with brain injuries like HIE were facing real challenges in accessing dental care, there wasn’t enough research exploring why. This survey was designed to change that.

The goal? To dig deeper into the specific barriers families face beyond the usual factors like socioeconomic status, geography, and race. By isolating the unique challenges that come with medical complexity—things like oral motor delays, sensory sensitivities, and difficulty finding knowledgeable or willing providers—Dr. Mara and other researchers can work toward real solutions. More than just identifying problems, this research aims to turn pain into purpose by developing educational tools to ease the burden and improve access to dental care for medically complex children.

The study took a two-step approach: a survey to gather broad insights and follow-up interviews to dive deeper into real-life experiences.
First, a 32-question oral health survey was designed for parents, legal guardians, and caregivers of children with HIE. Hosted on REDCap, a secure data collection platform, the survey was open for four weeks—and in that time, 262 caregivers shared their firsthand experiences, highlighting the challenges they face in managing their child’s dental health.

Next comes the interview phase, where researchers will get an even closer look at navigating dental care for families. These conversations will help paint a fuller picture of the barriers, frustrations, and gaps in care that numbers alone can’t capture.

This research is more than just data—it’s a step toward real change. By better understanding the unique dental challenges medically complex kids face, we can start working toward solutions that make a difference.

Respondent Demographics

This survey gives us a window into the dental challenges families in our community face, but it’s just the starting point. The responses don’t capture everyone’s experience, but they do help us start connecting the dots. With input from caregivers across five continents (North America, Europe, Asia, Africa, and Australia) and 39 U.S. states, this is a crucial first step in understanding the bigger picture.

Child Developmental Delays

Understanding the range of developmental delays in children with HIE is key to making dental care more accessible and better suited to their needs. This survey highlighted just how much these experiences can vary:

Nutrition Intake and Dental Health Implications

How a child with HIE receives nutrition plays a big role in their oral health, as oral feeding increases exposure to sugars, which can lead to cavities. The lower cavity rate in this group may be linked to the number of children who receive their nutrition through an NG or G-tube and subsequently have less direct exposure to food-related sugars.

Barriers to Equitable Dental Health & Care Practices

The good news? 81% of children with HIE have seen a dentist. The not-so-good news? Getting there isn’t always easy. Families still face major roadblocks when accessing consistent, appropriate care.

According to the survey:

Even when families can reach a dentist, are we truly addressing the full scope of care needed? This disconnect highlights just how much more we can do to bridge the gap for medically complex children.

So, what’s next? Future research is already underway, including:

• Conducting live interviews with families to dive deeper into their experiences and challenges when accessing dental care.
• Organizing focus groups with parents to review oral health resources to ensure that they’re relevant, accessible, and meet the community’s needs.
• Focusing on community-driven research, with caregiver input at the forefront, to identify gaps in care and develop practical, meaningful solutions.

To truly improve care for medically complex children, it’s not just about taking immediate action—it’s about setting the stage for lasting change. That means looking beyond today’s challenges to see what can be done long-term. With that in mind, here are some key areas for future research and action:

• Look at the long-term dental health outcomes of children with HIE to understand patterns and risks over time.
• Investigate effective oral hygiene strategies for children with developmental and sensory challenges.
• Identify best practices for training dental providers to support medically complex children better, improving accessibility and family experiences.
• Develop new oral health resources that directly address the real concerns caregivers have.

We know how tricky it can be to maintain proper oral hygiene, so it comes as reassuring news that 68% of caregivers reported brushing their child’s teeth daily. (And perhaps we speak for ourselves, here, but if only our flossing habits were that consistent!)

Still, many families face challenges—sensory sensitivities, difficulties with positioning, and resistance to brushing can all make consistency tough. That’s why finding the right strategies matters. Here’s what Rachyl recommends:

• Choosing a soft-bristle toothbrush (electric or manual) that works best for their child
• Experimenting with different fluoride toothpastes to find one their child tolerates
• Introducing fluoride rinses for extra protection
• Letting their child play with a toothbrush to help with desensitization
• Using medical play, timers, or other engaging techniques to make oral care more manageable

Sound familiar? It should! So many of these recommendations parallel the advice and strategies given by Annie Gunning, our Certified Child Life Specialist, in last year’s Child Life Q&A, where she discussed coping strategies to use during dental procedures! It just goes to show—when experts across disciplines recommend similar approaches, it reinforces how effective these strategies really are.

While we’re on the topic of what parents/caregivers can do to help promote and maintain oral motor and dental health, even little adjustments can help make dental care more accessible and less daunting.

• Try lap-to-lap positioning or reclining at home to get them used to the exam setup.
• Make “open wide” a fun practice so it’s not so unfamiliar in the dentist’s chair.
• Watch kid-friendly videos about dental visits to help set expectations.
• Bring a favorite toy or comfort item to help ease waiting room stress.

(Dare we say it again? We do! Refer to Annie’s dental coping resource blog for these recs and more!)

I doubt we need to remind you, but you are your child’s best advocate! Here are some ways to navigate this process and resources to support you:

• Timing matters: Schedule dental appointments when your child is most receptive—often in the morning or after mealtime. Break up dental visits into smaller steps rather than tackling everything at once.

• Acclimate to the environment: Exposure visits, where children simply familiarize themselves with the dental setting without treatment, can help reduce anxiety.

• Communicate with providers: If your current dentist is unfamiliar with medically complex needs, share your child’s specific challenges and what accommodations might help. Many providers want to collaborate and learn.

• Seek accessible providers: Some clinics specialize in serving children with special healthcare needs. University-based dental programs or hospitals often have specialists trained in complex care.

• Learn about disparities: Understanding the systemic barriers to dental care is key to advocating for change. Research shows that social determinants of health—factors like income, education, where someone lives, and access to healthcare—play a big role in why some people face more challenges in accessing dental care than others. Though we need more research on how this affects children with medical complexities, it’s clear that these social factors can make it harder for some families to get the care they need.

• Use trusted resources: The American Academy of Pediatric Dentistry (AAPD) and the CDC offer general guidance on pediatric oral health. While not HIE-specific, these resources provide valuable insights into best practices.

When caregivers share their stories—whether it’s the difficulties of finding the right dentist, navigating sensory issues, or simply making it through a dental visit—it helps highlight the real challenges families face. While research and training are important for improving dental care, the most meaningful change often comes from listening to those living it daily.

Storytelling isn’t just about sharing problems, though—it’s about finding solutions. When parents and caregivers talk about what’s worked for them (or what hasn’t), it gives dental professionals the chance to rethink their approach. Maybe it’s adjusting how exams are done, using different communication techniques, or finding new ways to make kids feel more comfortable. Every experience shared can inspire changes that make care more accessible and less stressful for families.

Ultimately, it’s these conversations that can lead to better care for kids with HIE and all medically complex children. The more we share, the more we learn—and the more we can make a real difference.

At Hope for HIE, we’ve worked closely with dental professionals to curate resources specifically tailored to the needs of children with HIE. By collaborating with experts in the field, we’re making sure that families have access to the right tools and advice to navigate the unique dental challenges their children face. It’s all about providing support that’s relevant, informed, and, most importantly, helpful.

• The Impact of HIE on Oral Motor and Dental Health – A Comprehensive Interview with Dr. Yepes: A pediatric dentist at Riley Children’s Hospital in Indiana, Dr. Yepes works closely with a multidisciplinary team of healthcare professionals to ensure comprehensive and integrated care for pediatric patients, especially those with medical conditions that range from asthma to more complex syndromes, such as HIE. 

• Dental Disparities in Medically Complex Children – with Dr. Matthew Mara, DDS: Dr. Matt Mara, DDS., a practicing general dentist, assistant professor of general dentistry at Boston University, oral health researcher, Hope for HIE medical advisory board member, and HIE dad, generously offered his time and expertise to discuss dental disparities experienced by HIE children and families, and those in other medically complex and vulnerable populations. 

• Coping During a Dental Procedure- A Child Life Resource: This resource equips parents and dental providers with valuable tools, strategies, and resources to help children with medical complexities cope during a dental procedure or visit and give them a much more inclusive and enjoyable experience. Visit the blog for direct links to the Live Q&A and key takeaways at-a-glance.

• Recommended Books: Annie Gunning, CCLS, has also curated a thoughtful list of books aimed at helping children with medical complexities navigate and understand the purpose of dental appointments and procedures.

• Oral Motor and Dental Health Peer Perspectives and Key Takeaways: Watch HIE parents Dawn Hamilton and Matt Mara, DDS, provide their own insights and experiences navigating their children’s oral motor and dental health, or view the key takeaways below!

To watch the full Q&A, visit our Medical Advisory Board Educational Series Playlist on YouTube, and click on the button below for our key takeaways at-a-glance!