“AmeriSpeak helped fill in a gap in primary data collection,” said Robbie Dembo, a senior research scientist in Health Care Evaluation. “If you recruit from a clinic, you’re only recruiting people who are accessing health care in a clinic. You miss people who have less access to the service system or are concerned about the possible stigma of using it.”

Using AmeriSpeak, we found a large pool of parents for targeted focus group discussions about their experiences navigating pediatric health care systems.

To find focus group participants, we used AmeriSpeak’s Prime Qualitative, which asks AmeriSpeak panelists if they would like to participate in a follow-up conversation. In this case, we asked the approximately 1,300 parents of children with special health care needs who completed the survey if they were interested in joining a focus group. Nearly 600 parents expressed interest.

“As a researcher, being able to recruit focus group participants through AmeriSpeak is huge,” Dembo said. “You hope you have enough of a diverse sample to choose from. We got a robust, varied set of qualitative data from these focus groups that we wouldn’t have necessarily gotten if we had recruited using other methods.”

We also surveyed parents of children without special health care needs so we could identify challenges unique to families with special health care needs versus those common to all families. We structured the survey instrument to identify specific barriers associated with specific services, whereas previous surveys explored accessing health care generally.

“If it’s an insurance barrier for mental health services, that’s a much more specific target for an intervention than overall insurance problems accessing health care,” Dembo said.

Our study oversampled Hispanic respondents and parents of older children aged 16-25 to ensure adequate representation of these groups. We found barriers for Hispanic and Black children with special health care needs, particularly with access to home health care. Among Hispanic respondents with children with special health care needs, 58 percent had unmet home health care needs, and 66 percent faced barriers to home health care access. Among Black respondents, 37 percent said they had unmet home health care needs.

Other findings for children with special health care needs include:

• The most commonly reported barriers across all types of health care services were insurance-related. In contrast, challenges with transportation were not a common barrier to any of the services we asked about. 
• Long wait times were a more common barrier for specialized services (mental health, specialty care, home health care) than preventive services. 
• Financial cost as a barrier also varied by service. Less than 2 percent of parents reported that cost was a barrier to accessing home health care, while nearly 20 percent reported that cost was a barrier to acquiring durable medical equipment that their children needed.
• Thirty percent experienced barriers to preventive check-ups, such as long wait times for appointments, compared to 15 percent of other children.
• Thirteen percent experienced at least one form of discrimination from health care providers, compared to 3 percent of other children.

The survey was fielded in January 2025, creating a baseline for measuring the impacts of ongoing policy changes affecting families of children with special health care needs.

“We’ve established a strong research base and foundation for further study,” Dembo said. “A follow-up survey with focus groups would help us understand what issues need to be prioritized for families navigating this time.”