2 Family-Caregiver Focus Group Discussion

Attachment B2:

Family/Caregiver Focus Group Discussion

Health Resources and Services and Administration (HRSA)

Maternal and Child Health Bureau (MCHB)

Pediatric Mental Health Care Access (PMHCA) Program National Impact Study

March 2024

Public Burden Statement: [INSERT]

HRSA MCHB PMHCA Program National Impact Study

Family/Caregiver Experiences With Behavioral Health Care for Children and Adolescents

Funding for data collection supported by the

HRSA MCHB

U.S. Department of Health and Human Services

JBS International (JBS) Attendees:

Interviewees:

Interview Date/Time:

Hello and thank you all for joining. My name is [insert moderator]. I'm from JBS International, Inc. (JBS), and I'll be leading today’s focus group discussion. I'm joined by my colleague, [insert note-taker], who will be taking notes.

Before we get started with group introductions, I'll first provide a brief overview of the purpose of the focus group discussion as well as some group guidelines.

The Health Resources and Services Administration (HRSA) Maternal and Child Health Bureau (MCHB) funds Pediatric Mental Health Care Access (PMHCA) programs. These programs are intended to help health professionals address the behavioral health care needs of their pediatric patients by diagnosing; treating; and, as needed, referring patients to behavioral health specialists.

HRSA also funded our company, JBS, to examine the impact of PMHCA programs. To do this, we are holding focus group discussions with families and caregivers who have sought and/or received behavioral health care for their child and/or adolescent. By speaking with families and caregivers, we hope to learn more about their experiences with behavioral health care and its impact on their child or adolescent. JBS is an independent evaluator; we are not a part of HRSA or any other federal agency.

We welcome your thoughts and expect this will take about 1 hour. We also want to let you know that:

• Your participation in the focus group is voluntary, meaning there is no cost or obligation to participate. You can stop at any point by leaving the meeting.

• We will not share any personally identifiable information.

• Nothing you say will negatively affect you or your child’s access to behavioral health care, so we hope you will feel free to share your thoughts openly.

Are there any questions about what I've explained?

• If yes, answer questions, then move to guidelines. 

• If no, move to guidelines.

Great. Next, to help the discussion run smoothly, here are a few guidelines:

• If possible, please find a quiet area for participating in the focus group that will give you the privacy to answer questions openly. You may want to use headphones to block out external sounds.

• Please mute your audio if you are not speaking.

• So that we can hear what everyone is saying, only one person should talk at a time.  

• To help protect your and others’ privacy, please don't discuss details of our discussion outside of this group.

• There are no right or wrong answers, and all responses are valid. Because they are all valuable, we want to listen to and respect each other’s ideas, experiences, and opinions.

• It's important to hear and discuss both the good and bad (positive and negative) experiences and opinions you may have. 

• It's okay not to discuss certain topics if they make you feel uncomfortable; please only speak as openly as you feel comfortable.

• Again, to protect your privacy, please don't say your child’s name or any private information about you or your child. You also do not have to share your name.

Are there any questions or comments about the guidelines before we continue?

• If yes, answer questions, then move to Teams symbols. 

• If no, move to Teams symbols.

Additionally, throughout today’s call, you may find the following symbols or icons on your screen helpful if you are using Microsoft Teams to participate:

• To mute or unmute yourself, click on the microphone symbol.

• To turn your camera on or off, click on the camera symbol.

• To open the chat, click on the chat symbol.

• To leave the meeting, click the red leave button.

Are there any questions or comments about how to use Teams?

• If yes, discuss comments or questions.

• If no, discuss audio recording, and move into participant introductions.

Thank you all for providing written consent prior to the call to record our discussion. I'll start the recording now.

[Start recording.]

Participant Introductions

I'd like to start by asking each of you to introduce yourself. Please tell us your first name or a name you would like to be called during this discussion and the age(s) of your child/children for whom you have sought behavioral health care. As a reminder, please don't share your child’s name or any other detailed personal information.

Thank you. Before starting our discussion, I'd like to explain some terms that we'll use.

• We'll use the term “child” to mean both children and adolescents.

• By primary care health professional, we mean the person who usually takes care of your child’s medical needs, such as a pediatrician. Throughout the interview, we will use PCP to refer to the primary care health professional.

• By behavioral health care, we mean having a PCP and/or behavioral health specialist address the thoughts, emotions, and behaviors that affect your child’s overall well-being and includes both mental health and substance use services.

• Behavioral health specialists may include psychiatrists, psychologists, and behavioral health therapists/counselors/social workers.

Access, Receipt, and Utilization of Behavioral Health Care

Now I'd like to ask you questions about accessing and receiving behavioral health care for your child.

1. What has been your experience discussing the behavioral health of your child with a health professional?

1. PROBE: Were you given an opportunity to share your concerns about your child’s behavioral health with your child’s PCP? What was that experience like?

• PROBE: Did you feel listened to? Why or why not?

2. PROBE: How did your child’s PCP learn more about your child’s behavioral health concern? For example, did the PCP ask you and/or your child questions or request you and/or your child fill out a form or questionnaire?

• PROBE: Were you comfortable sharing information about your child’s behavioral health with your child’s PCP? Why or why not?

• PROBE: Was the experience of answering questions about your behavioral health concerns helpful or a burden? Please explain.

2. What has been your experience, if any, discussing your child’s behavioral health needs at your child’s school?

1. PROBE: Were you comfortable sharing information about your child’s behavioral health with your child’s school? Why or why not?

3. What has been your experience, if any, discussing your child’s behavioral health needs at an emergency department?

1. PROBE: Were you comfortable sharing information about your child’s behavioral health at the emergency department? Why or why not?

4. What has been your experience getting behavioral health care for your child?

1. PROBE: What has been your experience, if any, with getting behavioral health care for your child from your child’s PCP?

• PROBE: Did you get the information that you needed to understand your child’s behavioral health needs, such as a diagnosis or term for your child’s behavioral health condition? Would you tell us more?

2. PROBE: What has been your experience, if any, getting referred to and scheduling an appointment with a behavioral health specialist, such as a child psychiatrist or therapist?

• PROBE: Did you get the information and/or support that you needed to schedule an appointment with the behavioral health specialist you were referred to, such as from your child’s PCP or a care coordinator? Why or why not?

3. PROBE: What has been your experience getting prescriptions to treat your child’s behavioral health concern when needed?

   1. PROBE: Are your experiences the same with your child’s PCP as any referred specialist? Please explain.

4. PROBE: Have you experienced challenges or delays in getting behavioral health care appointments and/or prescriptions? Please explain.

   1. PROBE: Are your experiences the same with your child’s PCP as any referred specialist? Please explain.

5. How well do you feel your child’s behavioral health needs are being met either by the child’s PCP or behavioral health specialist, and why do you feel that way?

1. PROBE: What needs do you and your child have that are not being met, if any? 

Culturally and Linguistically Appropriate Health Services

Now, we'd like to ask you about your experience communicating with and understanding your child's PCP.

6. How, if at all, did your cultural beliefs affect communication with your child’s PCP?

7. How, if at all, did your language preferences affect communication with your child’s PCP?

8. Have the materials and communication with your child's PCP been clear and easy to understand? Why or why not?

PMHCA Program Cost-Benefit

Now, we would like to hear about the impact of behavioral health care for you and your child.

9. How has receiving behavioral health care for your child positively or negatively affected your child’s day-to-day life? For example, day-to-day life may include their interactions at school or with family members and/or their peers.

10. How has receiving behavioral health care for your child positively or negatively affected the day-to-day life of you and your family?

Family/Caregiver Satisfaction

As we near the end of the discussion, we would like to hear about your overall satisfaction with your child’s behavioral health care.

11. Overall, how satisfied are you with the behavioral health care you received from your child’s PCP? Please explain.

12. Overall, how satisfied are you with the process of getting referred to and scheduling an appointment with a behavioral health specialist? Please explain.

Closing Comments

Thank you very much for taking the time to meet with us. This concludes the focus group discussion.