Comparing Design Thinking and Focus Groups for Stakeholder Engagement in Hispanic and Latino Autism Research
This comparative randomized mixed-methods study demonstrates that both Design Thinking and Focus Groups are effective methods for engaging Hispanic and Latino stakeholders in autism research, with Design Thinking offering distinct advantages in fostering mutual learning and co-developing actionable solutions.
Original paper licensed under CC BY 4.0 (https://creativecommons.org/licenses/by/4.0/). This is an AI-generated explanation of the paper below. It is not written or endorsed by the authors. For technical accuracy, refer to the original paper. Read full disclaimer
Imagine you're trying to solve a giant, messy puzzle: how to make autism support services work better for Hispanic and Latino families. You have a bunch of different people holding the pieces—parents, autistic adults, teachers, and therapists. The big question is: How do you get everyone to talk, share their ideas, and actually build something useful together?
Researchers at Thomas Jefferson University and their partners decided to put two different "conversation engines" to the test. They wanted to see which one worked better for this specific group: Design Thinking (DT) or Focus Groups (FG).
Think of Focus Groups like a cozy, open-mic night at a coffee shop. Everyone sits in a circle, and a moderator asks questions like, "What was your best day?" or "What was your hardest moment?" It's great for hearing stories, sharing feelings, and realizing, "Hey, I'm not the only one who feels this way!"
Now, think of Design Thinking like a high-energy "hackathon" or a creative workshop. Instead of just talking about problems, the group is handed a mission: "Let's fix this!" They go through steps like Empathize (understanding the pain), Define (naming the problem), Ideate (brainstorming wild solutions), Prototype (building a quick model), and Test (trying it out). It's less about sharing stories and more about building a new tool together.
The Big Experiment
The team gathered 130 people from Pennsylvania, New Jersey, and Delaware between October 2023 and September 2025. They included 77 parents/caregivers, 8 autistic adults, 12 occupational therapists, and 33 teachers.
They split these folks randomly into two teams. One team got the "Open-Mic" treatment (Focus Groups), and the other got the "Hackathon" treatment (Design Thinking). Every single session was bilingual (English and Spanish) with live interpreters, held in familiar community spots, and even included sensory breaks and snacks to make everyone comfortable.
The Verdict: Both Work, But They Do Different Things
Here is the cool part: Both methods were amazing. The researchers measured how well the sessions went using a special scorecard called the S-CEE. Both groups scored super high (averaging 4.0 or higher out of 5) on almost everything. This suggests that when you treat people with respect, speak their language, and create a safe space, both ways of talking work wonders.
However, the two methods had different superpowers:
- Design Thinking (The Builder): This group scored significantly higher on acting on ideas and mutual learning. It was like the team didn't just listen to the parents; they actually used those ideas to build a prototype solution right there in the room. The parents felt like their input was being used immediately. The researchers and the community felt like they were learning from each other in a two-way street.
- Focus Groups (The Storyteller): This group was just as good at respecting perspectives and being transparent. It was the perfect place to hear shared experiences and feel heard. It didn't necessarily build a new app or plan on the spot, but it created a deep sense of connection and validation.
What the Paper Says (and Doesn't Say)
The paper is very clear about what it found and what it didn't.
- It proves that both methods are effective for engaging Hispanic and Latino communities in autism research.
- It suggests that if your goal is to co-create a solution or fix a specific problem, Design Thinking might be the better tool because it turns talk into action.
- It suggests that if your goal is to understand shared experiences and build trust through storytelling, Focus Groups are a powerhouse.
- It does NOT say that one method is "better" than the other in a general sense. It doesn't claim that Focus Groups are bad for minoritized communities (even though some past studies worried about power imbalances); in this study, with the right setup, Focus Groups worked beautifully.
- It does NOT say that these results apply to every single community without changes. The success relied heavily on specific ingredients: bilingual staff, community locations, and sensory supports.
The "But..." (Limitations)
The researchers were honest about the bumps in the road.
- The "Nonspeaking" Gap: They noticed that some autistic adults who didn't speak or needed special communication devices (AAC) found it hard to join in because both methods relied heavily on talking. The paper suggests future studies need to build in more tech and alternative ways to participate.
- The "Trust" Factor: They noted that some families were hesitant to join because of broader worries about immigration and safety in the US. This wasn't something they could measure with a survey, but it's a real-world barrier that affects who shows up to the party.
- The "Autistic Adult" Challenge: It was harder to recruit autistic adults than parents. Only 8 autistic adults joined the study, compared to 77 parents. The paper suggests this might be due to protective family dynamics or past experiences of stigma.
The Bottom Line
If you want to build a bridge, you might need a Design Thinking workshop where everyone grabs a hammer and nails. If you want to understand the river's current and the stories of the people who swim in it, a Focus Group circle is perfect.
The paper concludes that you don't have to pick just one. You can use the right tool for the job. If you want to solve a problem with your community, go for Design Thinking. If you want to hear their stories and validate their lives, go for Focus Groups. And if you do either one with care, respect, and a bilingual team, you'll likely get a room full of people who feel heard, valued, and ready to help.
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