What do caregivers think about the healthcare system for Tic Disorders?
Community Summary of: Caregiver Perspectives on the Health Care System for Tic Disorders: Utilization and Barriers
Authors of the article in the Journal of Behavior Therapy: Brianna C. M. Wellen, PhD, Kirsten R. Bootes, MD, Emily I. Braley, MS, Christine Conelea PhD, Douglas W. Woods, PhD, Michael B. Himle, PhD
Published online: March 2024
Community summary posted on August 19, 2025
Word count: 388 (3 min)
Reading level: 7th grade
Why does this study matter?
Tics are involuntary, rapid, and repetitive movements or sounds. They can be painful and confusing. They can make it hard for them to do daily activities. And, so, it can be hard for people who take care of children with tic disorders to figure out how to help their children. They can have a hard time finding the right doctor and getting the help they need. We want to know more about what’s hard and what might make it easier for them. We want to recommend to the people who make decisions how to improve these caregivers’ experiences with healthcare providers.
What happened?
We asked people who take care of children with tic disorders to fill out surveys about a few different topics.The surveys asked about things like going to the doctor or therapist. They also asked about their children’s symptoms and their stress. They asked them about how to make things better. We put all the information together to see what we could learn about this important group of people.
We sent the online survey to groups that help the people we wanted to know more about. These groups shared the online survey and 330 people filled it out. Only 186 surveys were correct and complete, however, and could be used. We put the information together and looked for themes and the number of people who said the same things. We also looked at the different things people said. We then wrote a paper for a journal about what we found.
What did our research team learn?
Most families (70%) first talked about tics with their pediatrician or primary care doctor. When they did this, they did get help. However, many families thought that their doctors didn’t know enough about tic disorders to help them as much as they needed. This meant that the families had to see more doctors.
Most families (63%) told the researchers that they had a hard time finding a doctor who understood their child’s tic symptoms. Problems families had in getting help included time and money.
What can our research team do next?
If more pediatricians and primary care doctors knew more about tic disorders, that could help. But also it might help if pediatricians and primary care doctors improved how they give information to families. Reassuring families and giving information in ways that they can understand might help.
Solutions included more doctors and therapist training and more specialists who are available to more people.
How can you find out more?