State Systems interview guide for State Coordinating Center

Interview Protocol for the State Public Health Coordinating Center for Autism

Introduction and Verbal Consent

Hello and thank you for taking the time to speak with us today. My name is [interviewer name] and I am a researcher at [Westat/Westat Insight]. I’m joined on the call by [names/affiliations of other team members, if applicable] and [note taker name, if applicable], who will be taking notes during the call.

We are part of a team hired by the Maternal and Child Health Bureau (MCHB) to evaluate the Autism CARES (Collaboration, Accountability, Research, Education, and Support) Act Initiative. The purpose of today’s interview is to learn about your program’s activities and experiences, including accomplishments and challenges, and understand the data collected by your program.

In the interview, we will focus on the technical assistance (TA), resources and dissemination activities your center provided to the State Systems grantees to support and assist the 50 states, Title V programs, and nine jurisdictions to develop state-wide systems of care during the current grant period.

If you have any questions about your rights as a participant in this evaluation, you may contact Westat’s Human Subjects Protections office. Would you like that phone number? [IF YES: Please call 1-888-920-7631 and leave a message with your full name and the name of this project, “Autism CARES Act Initiative Evaluation.”]

With your permission, we would like to audio record the interview for note-taking purposes. Other project team members may listen to the recording, but we will store the recording on a secure directory and delete it after we have prepared summaries of the interviews. Would it be okay to record the call?

[If verbal agreement received, begin recording.]

Do you have any questions before we begin?

Interviewee Introduction

Could you start by introducing yourself/yourselves with your name(s) and role(s)/responsibility(ies)?

State Systems Grantee Support

1. How did you support the states and grantees to build capacity addressing newly identified implementation barriers and/or emerging issues? (For example, promotion and/or demonstration of newly identified strategies, promising policies and practices, and resources)

2. What topics did your center cover in the support you provided? Examples:

   1. Screening referrals

   2. Community-based services

   3. Family navigation/care coordination

   4. Transitions from pediatric to adult health care

   5. Telehealth

   6. Other (Specify)

3. How did you share information across the grantees and States to support contributions to the autism/DD field, and inform or influence MCHB autism investments?

4. What types of dissemination strategies to increase awareness of autism/DD did you use? (For example, presentations at conferences, publications, social media, mainstream media)

5. What would you say have been your most successful strategies for raising awareness about autism/DD and resources?

6. What do you see as the biggest barriers to raising awareness?

7. What can you tell me about how you have developed and sustained partnerships to support contributions to the autism and DD field? For example:

   1. The Early Childhood Comprehensive Systems (ECCS) grant activity focused on rural populations and developmental screening

   2. Autism CARES Act National Interdisciplinary Training Resource Center

   3. Other partnerships to address health equity and other emerging issues important to autism/DD populations

8. What work has your center done to develop measures and data collection systems for autism/DD systems of care?

9. How have you incorporated health equity in your TA and support?

10. What steps have you taken to ensure the sustainability of your center’s efforts?

COVID-19

Now we would like to ask you some questions about the effect of COVID-19 on your center.

11. What changes did you make because of COVID-19? For example:

    1. Topics and populations covered

    2. Strategies used

    3. Dissemination products (e.g., presentations at conferences)

    4. Timeline of activities

    5. Management and operations of the program (e.g., virtual meetings replace in-person meetings)

12. How did these changes positively affect your center?

13. How did these changes negatively affect your center?

14. What, if any, of these changes related to COVID-19 is your center continuing or planning to continue?

Wrap Up

Those are all the questions I have for you today.

15. Is there anything that we have not covered that you would like to share?

Thank you very much for speaking with us today. If you have questions about this interview or additional information you would like to share, please reach out to Katherine Flaherty ([email protected]) or Carla Bozzolo ([email protected])

Westat Insight ▪ SPHARC Interview Protocol 2