Her Calling: Helping Families

As she finishes her doctorate in occupational therapy at the University of Minnesota over the next few months, Bruktawit Zewdie (MNLEND 2022-23) is reaching back to her time as a MNLEND fellow at the Institute on Community Integration to help set the course for her future.

During her fellowship, Zewdie became interested in the work of the TeleOutreach Center at the Masonic Institute for the Developing Brain. The center supports researchers in using telecom technology to increase participation in clinical research. For her MNLEND project, she created a one-page flyer for parents with resources and information about autism, working with ICI’s Jessica Simacek, director of the TeleOutreach Center.

Now, she’s working with Simacek again. For her doctorate capstone project, she is helping the team learn more about the experiences of families of children on the autism spectrum who have been waitlisted for evaluation or intervention. The work is intended to expand on the three-year Maternal & Child Health Bureau’s Autism Field-Initiated Innovative Research Studies (Autism-FIRST) Program, which is set to conclude this year. Led by Simacek, with co-principal investigators Adele Dimian and Amy Esler, it is a randomized control trial of a remote evaluation and intervention package for waitlisted families.

“We are thrilled that Bruk will be completing her doctoral capstone in TeleOutreach and look forward to learning how her work will help our team and others to better understand the experiences of families who were waitlisted for support,” Simacek said. “We will immediately use her findings to iterate on the current supplemental intervention model for modifying or adding components, such as care navigation, soon after diagnosis.”

This summer, Zewdie will interview parents about their experiences on the waitlist for diagnostic evaluation. This will inform future directions of the intervention model on how best to support the needs of families experiencing lengthy wait times and, potentially, high levels of stress.

“Families go through a lot of stress while they wait for a diagnosis, and they don’t get a lot of support,” Zewdie said. Ongoing work at the TeleOutreach Center creates ways for families to connect with early intervention techniques that can be used even before an official diagnosis.

“When the LEND program ended, I kept thinking about how much I liked the telehealth aspect of Dr. Simacek’s work because access to health care is so tough right now, and she is using this technology to broaden these services,” Zewdie said. “If it hadn’t been for LEND, I wouldn’t have this opportunity.”

A significant part of the mission of the TeleOutreach program is to bring resources to underserved communities, which is also a personal mission of Zewdie’s.

“I’m originally from Ethiopia, and I’ve been back there twice since my family came to Minneapolis when I was 9,” she said. “Autism and even occupational therapy aren’t well known back home, and they don’t have resources to help their children. I’m also very involved in my church here, and I see a lot of families here having a hard time. In Ethiopia, schools send kids home and say they don’t know what to do with these students, so parents have to quit their jobs. It’s a lot for everyone, so if there’s anything I can do to help, I want to. Eventually, I’d love to help develop a telehealth program geared to international families.”

Zewdie also took the Disability Policy and Services course taught by ICI Director Amy Hewitt.

“These experiences were eye-opening,” Zewdie said. There were times when I questioned whether I could make a difference in occupational therapy, but hearing from patients and other professionals reassured me. There’s a lot of work to be done.”