Researcher, Autism Advocate

Opening Doors

When Stefanie Zavodny Jackson joined the Hillman Scholars in Nursing Innovation program in 2013, she recalls, “I was only 20 years old, and really didn’t know what I wanted to do with my life. I never saw myself being a leader.”

What a difference five years makes. As Zavodny Jackson enters the final year of her integrated PhD program, she believes the Hillman program has opened the doors to a range of unforeseen career opportunities, including clinical nursing, teaching, research, and even policymaking.

“As I’m getting more familiar with the nuances of the issues surrounding how to best support parents of children with disabilities, my career may take a turn toward being more involved in policy, which is not something I ever thought I could see myself doing. I could impact a lot of families in a meaningful way, to try to increase the resources we have and increase access to those resources.”

Uncovering an Unaddressed Need

Having members of her family and friends with autism spectrum disorder motivated Zavodny Jackson to focus her Hillman research on supporting families with developmental differences. It also connected her to the Penn mentor who has had a major influence on her professional development: Margaret Souders, PhD, assistant professor of human genetics. Souders is an internationally renowned researcher whose expertise in sleep medicine and genetics allows her to create targeted interventions for children with autism. She was principal investigator on a U.S. Department of Defense research grant exploring the feasibility of tailoring behavioral interventions for children with autism spectrum disorder.

As an undergraduate, Zavodny Jackson was able to get involved in Dr. Souders’ research on how to improve sleep in children with autism and insomnia. She took Souders’ three-course series on autism and received training in different behavioral strategies. Zavodny Jackson then went on home visits to teach parents strategies to help children with autism and associated insomnia fall asleep and stay asleep.

As Zavodny Jackson talked with Souders about how the parents she encountered on these visits “were really stressed out, to say the least,” the two identified the mental health of these caregivers as a critical, generally unmet need. Zavodny Jackson decided to narrow the focus of her PhD dissertation to depression in mothers of children with autism.

“I owe a lot to Dr. Souders,” she says. “I feel I’ve gained confidence and learned that I could play a larger role” in building an innovative approach to an important healthcare challenge.

Depression in Mothers of Children with Autism

Zavodny Jackson’s PhD research will first calculate the prevalence of depression in a group of mothers of children with autism spectrum disorder. She will then compare that to the prevalence of depression in a sample of mothers of children with Down syndrome and another sample of mothers of children with typical development.

This seeks to answer the question, “how many moms screen positive for depression, and how do the rates compare across those three groups of moms?” Zavodny Jackson explains.

She will also explore how mothers of children with autism describe their own experiences in their own words. Using in-home interviews, Zavodny Jackson will compare the responses of moms who screen positive for depression with those who screen negative. She hopes these differences will help to inform further efforts to develop new depression interventions that work for this vulnerable population.

Having an Impact on Nursing Care

Zavodny Jackson is excited about her research and the opportunity to pursue clinical work as well. She is in no rush to narrow her options. She believes the experience and insights she gains while practicing clinical nursing will make her research more relevant so it has greater impact.

She also believes she can impact care through teaching, both formal and informal. She has provided course support and given lectures for Dr. Souders’ autism courses, helping teach nurses and nurse practitioners about autism and how to best care for those with autism and their families. As a clinical lab instructor for first-year BSN students, she draws on her past clinical experience as a nurse assistant and registered nurse to teach basic clinical and physical assessment skills. “Not only do I teach skills. I teach them what nursing is. And to do that I’ve had to reflect on my own practice and why I fell in love with nursing in the first place.”

Whether it’s teaching in the lab or presenting at conferences, Zavodny Jackson says, “I feel like I’ve become an advocate for the nursing profession.” There are not many nurses in autism research, and her presence at these conferences is often met with confusion. She hopes that by speaking to colleagues from other disciplines, and by presenting solid work, she can help others understand what nurses are and how much nurses have to offer to autism research and care.

“I feel like being a nurse with a PhD will empower me to have a seat at the table when important decisions are being made that influence care.”