Table 3.
NYCKidSeq parent-participants reactions to GUÍA and feedback on the content and design.
| Topic area | N (%) | Example quotes |
|---|---|---|
| General reactions | ||
| Positive | 18 (100) | “For us people that don’t know anything about genetics, seeing something with letters and numbers can help us understand better.” (2173-35 Spanish speaking) |
| Superior to other result disclosure experiencesa | 10 (100) | “The way that is written and edited down is easier to understand than past experiences where they were just talking to us, it’s just verbal and when you’re not a geneticist or in the know about the terms and what they mean, this makes it easier to digest.” (2174-2) |
| Content | ||
| Amount of information | “It gives me the information that applies to my child. If I wanted more information, then I can click on links to provide me more information. It doesn’t bombard me initially…if you want more information this is where you go.” (2174-4) | |
| Right amount | 18 (100) | |
| Clarity of information | “Speaking about genetics can be confusing for one who doesn’t speak the language, but I could understand what [genetic counselor] said with the tool.” (2174-36 Spanish speaking) | |
| Understandable | 17 (94) | |
| Superfluous or missing information | 0 | “If you don’t know about DNA basics or sequencing, it explains everything.” (2173-22) |
| Design | ||
| User interface | “The layout helps go through what you’re looking for, it compartmentalizes things. It makes it easier for your eyes, you go right to it.” (2174-22) | |
| Easy to navigate | 17 (94) | |
| Illustrations | “All the images were helpful, but I think there could have been an extra design or image to help people that don’t understand genetics. I understood, but if there was another image maybe I would’ve understood more.” (2173-35 Spanish speaking) | |
| Right amount | 15 (83) | |
| Helpful in understanding concepts | 17 (94) | “The images remind me of being in science class in high school.” (2174-2) |
| Typography | ||
| Clear | 18 (100) | “Easy to navigate and good text size.” (2174-7) |
aTen parent-participants’ children had undergone previous genetic testing that was unrelated to the NYCKidSeq study. This testing occurred at least 6 months prior to their enrollment in the NYCKidSeq pilot phase.