FAN Feature: The benefits of engaging families in research publications
- Published March 31, 2025
We sat down with Sara Mullins, BSME, CFEI, IAAI-FIT, FF/EMT, a Family Advisory Network (FAN) representative for Colorado, who coauthored the recently published paper, “Supporting Children’s Mental Health Needs in Disasters” in Pediatrics. The paper delves into the mental health challenges children face during and after disasters and the critical role families play in supporting their well-being. Mullins shared her journey into research, her perspective as a special needs mom and firefighter/EMT, and why family involvement is essential in shaping better health care.
How did you get involved with this research project?
I joined the FAN after responding to an advertisement for a FAN for the state of Colorado. Through networking with other FANs, I shared my passion for increasing accessibility to pediatric mental health care in the United States, which led me to the Pediatric Mental Health team within the Pediatric Pandemic Network. It's been a beautiful partnership.
How did you participate in this research project?
The group I work with is truly a think tank, bringing together professionals from across the country and various areas of health care—including researchers, doctors, providers, and myself! As a special needs mom and firefighter/EMT, I offer the parent’s perspective on our projects. I feel incredibly fortunate to be part of such a highly educated yet open-minded team. Together, we explore ideas from both the hospital and parent sides, analyzing the benefits and challenges of various pediatric mental health topics. Our goal is to envision what true, wraparound care could look like in the future and chart a path to make it a reality.
Based on this experience, why do you think it is important for families to participate in research?
Medical education often focuses primarily on the pathology of treating physical and mental illnesses in a way that feels clinical and impersonal. It tends to overlook the lived experiences and barriers to care—not just for the patient, but for the entire family that supports them. If families don’t speak up, providers may never realize just how complex and overwhelming the healthcare system is to navigate.
What are some things that researchers should know about asking for family participation in research projects?
Implementing a care solution is rarely as simple as it appears on paper. Take car repairs, for example. It sounds straightforward: "Just go fix your car." From the mechanic’s perspective, it’s a routine process—schedule an appointment, get the car repaired, and pick it up a few days later. But for the car owner, it's far more complicated. They need to figure out how to get home without a car, manage rides for kids, possibly arrange child care, buy groceries in advance, and coordinate multiple logistical tasks—any delays or complications add extra stress.
Families navigating pediatric health care face similar challenges. Nearly every solution assumes that once parents are educated, they’ll take care of everything themselves. However, for parents of children with moderate to severe medical needs, coordinating care can become a full-time job. They often face long waitlists for appointments, multiple referrals, prescription availability issues, and the constant juggling of logistical challenges.
Accessing care for a child is a draining, labor-intensive process—especially for working or single parents. Medical providers are often unaware of the extent of this strain, and the reality is that our healthcare system lacks continuity between emergency care, clinical visits, pharmacies, and home-based care. Yet, the most exhausted person—the parent—is expected to be the coordinator of it all. This isn’t a sustainable model for optimal outcomes.
Both parents and providers care deeply about children. By involving parents in discussions about care solutions—alongside healthcare professionals—we can create a system that actually works, ensuring better support for families and better outcomes for children.