Introduction
autism
Thank you for offering your time today! As you may remember, Family Navigation is a program that was created to help families better connect with the health care and community systems and the services available to children. Family navigators help parents and caregivers better understand a provider’s advice for their children’s health. They help families overcome some of the barriers or difficulties, like transportation issues, language and cultural differences they may face when trying to attend appointments or access services for their children. Navigators work with families throughout the developmental assessment process. After the developmental assessment process has been completed, they continue working with families for 100 days to help them access services their children may need. Do you have any questions about Family Navigation?During this interview, we intend to discuss your experience of working with your Family Navigator. As we discussed before, this call will be recorded and de-identified. Only key study staff will have access to your interview.Before we begin, I want to remind you of a few things:You can take a break or ask to turn off the recorder at any time.You are encouraged to tell me (the interviewer) if you feel uncomfortable for any reason.You can ask to stop the interview at any time – you do not have to keep going if you choose not to.Do you have any questions before we begin?Now, I’d like to ask you questions about your experiences. Please be open and honest. There are no “right or wrong” answers to the questions I will be asking you.

 • Who initially told you that you would be working with a Navigator? • What did they say? • What was going through your mind when you were referred? • What did you expect to be helpful about having a Family Navigator? • What did you think would be challenging or difficult about having a Family Navigator? • What did you discuss? • What made you feel comfortable or uncomfortable? • Was there anything that was confusing about the conversation? If yes, why?


 • What role did you expect the navigator to play? • How did your expectation compare to what it was actually like having a Navigator? • [ • What are some words that best describe your experience of working with a Navigator? • Please give me some examples of things your Navigator did to help or support you in this process.  ◦ [ • 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? •   ◦ What would you have liked help with?     ◦ How could they have better helped or supported you? • What did they say?  • How open were you to hearing their opinions? • 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? • Did this differ based on what topic was being addressed? How? • What type of interaction was least helpful? Why? • 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.)? • Why did you choose this number? • In what ways did their level of understanding show when working with you? • Why did you choose this number? • In what ways did their level of understanding show when working with you?


 • How did this make you feel? • What things did they do that made you NOT what to work with them? Why? • Did you feel that you could trust your Navigator? Why or why not? • What made it difficult? Why? • What were your friends’ and family’s reactions to you working with a Navigator? • How available or accessible was your Navigator? • If yes:  ◦ At what point during the process did this happen, such as at the beginning when you first met them or later on?  ◦ Why didn’t you want to work with your Navigator? • What did you like about their personality? What did you not like? • Was there anything your Navigator did that bothered you?


   ◦ How or why was this challenging for you?  ◦ How, if at all, was this challenge addressed? By whom?  ◦ How could this challenge have been avoided or better addressed?  ◦ How long did you experience this challenge? For example, was this a short-lived challenge, or was it present for an extended period of time?  ◦ How successful were you and/or your Navigator in finding a solution to the challenge?   ◦ Some   ◦ We also hear parents talk about 


 • Why did you choose this number? • What type of assistance, if any, do you wish you could have had longer from the Family Navigator? • What else could your Family Navigator have done for you? • How would this help? • How could this have helped you?


 • What was it like for you to receive this diagnosis? • When the doctor told you about the results of the evaluation, how did you feel about the outcome? • How did the outcome compare to how you saw your child? • How much did you agree or disagree with the diagnosis? Why? • What score would you say you started with, and what score would you have right now? • Why did you choose these numbers? • What do you say? What do they say? • What do your friends and family know about autism? • Do you think some people have the wrong ideas about autism? Why? • Do you think people treat your child differently if they know he/she has autism? Why? • What messages do people get from the media, such as TV or the news? • What kinds of messages do people get from friends or family? • What kinds of messages do people get from health care providers, such as their pediatrician? • How, if at all, might Family Navigation change the way people think about autism?


 • How do you think training could be improved? • Are there other things that the navigator could be trained in that you think would be helpful?  • 

