Part 1B: Intervention- Working With Your Navigator

Intent: The intent of this section is to understand parents’ experiences working with their navigator. This may include perceptions of the role of the navigator, feelings throughout the navigation process, examples of how the navigator did or did not support the families, and general nuts and bolts of working with a navigator. By the end of this section, the interviewer should have a good understanding of what actually happened during the navigation period and how the parent felt about it. “Now let’s talk about what it was like to work with your Navigator.”

Q4: Before you started the process, what did you think it would mean to have a Family Navigator?

• What role did you expect the navigator to play?  • How did your expectation compare to what it was actually like having a Navigator?  • [If not already answered by previous question]: Looking back, how would you describe the job of your Family Navigator?  • What are some words that best describe your experience of working with a Navigator?

Q5: What did you usually discuss with your Navigator?

• Where did you typically meet with your Navigator? Why did you choose this location? Where do you think would be the best location for parents to meet with navigators?

Q6: How, if at all, did your Navigator help or support you during the process?

• Please give me some examples of things your Navigator did to help or support you in this process.   ◦ [If parent can’t think of anything]: Sometimes we hear parents talk about getting help from Navigators with things like transportation to visits, scheduling appointments, or connecting to services. Other parents talk about getting emotional support from Navigators. In what ways, if at all, did your Navigator help or support you?  • Can you tell me about specific instances where you felt you needed your Navigator to help you more?  • What about times when you felt you needed less help from your Navigator?  • How could your Navigator have better helped or supported you?  • What else do you wish they had done?  • [If parent says that they received no help]:   ◦ What would you have liked help with?    ▪ [If parents come up with something]: Did you feel you could have asked your Family Navigator to help you with it? If not, why?   ◦ How could they have better helped or supported you?

Q7: What was the most important thing that your Navigator did for you? Why?

• What was the least important thing that they did for you? Why?

Q8: Tell me about your experience discussing family navigation with family, friends, or other people.

• What did they say? [Make sure to specify whether results relate to family, friends, or both.]  • How open were you to hearing their opinions?

Q9: Did your pediatrician or any other provider help you connect with or support you with your Navigator?

• How could they have better helped you connect with your Navigator?  • What, if any, additional support was provided by the pediatrician?  • How, if at all, should family navigation fit into the health care system or with your pediatric clinic?

Q10: Navigators work with families in different ways. They do home visits, calls, accompany families to appointments, and more. What type of interaction did you find most helpful when you worked with your Navigator? Why?

• Did this differ based on what topic was being addressed? How?  • What type of interaction was least helpful? Why?

Q11: How did you usually communicate with your Family Navigator (for example, phone calls, texts, or other ways)?

• What type of communication do you think worked best?  • What type of communication was least effective?  • How often did you communicate with them?  • How satisfied were you with how much you communicated with your Navigator?   ◦ If you were to go through this process again, would you want to communicate with your Navigator more often, less often, or about the same amount? Would you want to communicate in the same way again (texting, calling, etc.)?

Q12: On a scale of 1–10, with 1 being almost nothing, and 10 being an expert, how well do you think your Navigator understood autism and other developmental concerns?

• Why did you choose this number?  • In what ways did their level of understanding show when working with you?

Q13: [If not already answered in Q12]: On a scale of 1–10, with 1 being almost nothing, and 10 being an expert, how well do you think your Navigator understood the diagnosis process and accessing services?

• Why did you choose this number?  • In what ways did their level of understanding show when working with you?