GenIC Testing Act Early Messages for "Learn the Signs. Act Early

Form Approved

OMB No. 0920-0919

Exp. Date 01/31/2015

Task 1 Parent Focus Group Guide

1. Introduction (10 minutes)

1. THANK RESPONDENTS FOR ATTENDING, BRIEFLY INTRODUCE SELF.

2. GROUND RULES

• PRIVACY

• HONESTY/OK TO DISAGREE

• TAPING/TWO-WAY MIRROR

• SPEAKING ONE AT A TIME

• RESTROOM

• ETC.

3. [GO AROUND THE ROOM AND ASK RESPONDENTS TO INTRODUCE THEMSELVES] Can you please tell me your first name, the names and ages of your children, and your favorite thing about being a parent?

As you can see from going around the room, everyone here is a parent and has at least one young child. The Centers for Disease Control and Prevention (or CDC) in Atlanta works on many projects to improve the nation’s health, including projects to help children. Often, CDC seeks the public’s opinion on these projects to make sure that what they are doing and saying is clear, understandable, and helpful. That is why we have asked you here today; to share your opinions, as parents/guardians, about child development and help CDC ensure that parent perspectives are included in their efforts. During today’s discussion, we will talk a lot about “child development.” It is important to keep in mind that this term “child development” not only refers to your child’s physical growth, but also how your child plays, learns, speaks, acts or moves for his/her age. So please keep that in mind throughout the discussion and also please feel free to speak your mind; CDC really wants to hear from you.

2. Knowledge and Awareness about Developmental Monitoring and Early Intervention (30 minutes)

• Let’s start by talking a bit about our children’s development when they’re very young.

1. When you were pregnant or when your child was an infant, did anyone talk to you about how your child should be developing or child development in general?

• Who talked to you about these issues?

• Did your pediatrician talk to you about this? Family or friends? Anyone else?

• What sorts of things were you told about how your child should be developing or about child development in general?

2. How familiar are you with the developmental milestones that children are expected to meet at different ages?

• What are some examples of developmental milestones? (MODERATOR SHOULD NOTE ALL MILESTONES MENTIONED ON EASEL.)

(MODERATOR: FLIP EASEL TO LIST OF EXAMPLES FROM CDC)

The CDC wants you to know that there are many milestones that are used to monitor child development. Here is a list of milestones that people may not always think of. They include: responding to their name, making eye contact, engaging in pretend play, and speaking in full sentences. So, in addition to all the ideas you came up with, we should also be thinking about these.

• Which milestones do you think are most important? Why?

• Which are you most likely to discuss with your child’s doctor?

• How did you learn about developmental milestones? Where did you get information about them?

3. Do you keep track of your child’s development and whether or not they are meeting the developmental milestones? And again, by child development we are referring to not only how your child grows physically, but also how your child plays, learns, speaks, acts or moves for his/her age. [MODERATOR: REFER TO CDC LIST OF MILESTONES]

• At what age did you start tracking? How do you track it? How often?

• Do you discuss these milestones with anyone? Who?

• Have you talked with your child’s doctor about your child’s developmental milestones? If so, how often? Is it regularly or only when you have a concern or question?

4. How familiar are you with developmental delays?

• Can you tell me a little about what the phrase “developmental delay” means to you?

MODERATOR SHOULD READ THIS TO GROUP: For today’s discussion, we would like to all be thinking about “developmental delays” the same way. I am going to read you a definition of “developmental delays” provided by the CDC: “Not reaching developmental milestones, or reaching them much later than other children of the same age might indicate a developmental delay.”

• Can you think of any examples of developmental delays?

• Are there some delays that you think are more important to look for than others? Which ones concern you the most?

5. Have you ever heard of [Maryland’s Early Intervention Program/Georgia’s Babies Can’t Wait Program]?

• What do you think this program is? What does it do?

• Who can use these services?

• [NOTE TO MODERATOR: ASK ONLY IF AWARENESS OF SPECIFIC PROGRAMS ABOVE IS LOW] Are you familiar with the idea of “early intervention”? What does it do? Who is it for?

3. Understanding of the “Act Early” Concept; Motivators and Parent Self-Efficacy [30 minutes]

Often, children with developmental delays are not diagnosed until they reach school age. Because the opportunity to “act early” is missed, these children do not have the opportunity to get early intervention or other services before they enter school. These services can be very helpful in addressing developmental delays at young ages, and can help better prepare children for school.

1. Based on what I just told you and what you already know about child development, what does the idea of “acting early” mean to you? [MODERATOR WRITES RESPONSES ON EASEL]

• Do you think that “acting early” is important? Why or why not?

2. What kinds of things might make it difficult for a parent to “act early” if they have a concern about their child’s development? [MODERATOR WRITES RESPONSES ON EASEL]

• PROBES: Fear, nervous/anxious, doctor is not helpful, young or first time moms.

3. We’d like to get a better understanding of what a parent might do if they have a concern about their child’s development. Let me remind you once more that by child development, we’d like you to think about not only how your child grows physically, but also how your child plays, learns, speaks, acts or moves for his/her age. Whether or not you’ve ever had this concern personally, try to imagine that you do. Let’s walk through the process you might take:

• What would you do first if you had a concern?

• Where would you look for information?

• What would motivate you to take further action?

• How would you decide whether or not to discuss the concern with a doctor? What would motivate you to initiate the discussion?

• What are some reasons why you might wait before talking to the doctor?

d. Approaching an authority figure such as a doctor to talk about a concern can be hard. Do you currently feel comfortable speaking up and sharing specific concerns with your child’s doctor? What would motivate you to approach your child’s doctor and have a conversation with them about a concern you might have about your child’s development

• Do you feel your child’s doctor would listen to your concerns?

• What would you do if your child’s doctor did not agree with your concerns?

• Besides your child’s doctor, who else might you talk to?

4. “Act Early” Message Testing [45 minutes]

The CDC wants to give parents like you information about what you can do to monitor your child’s development. They have drafted some messages that they’d like your feedback on. As a group, let’s go through them and I’d like to hear what you think about each of them. Please follow along as I read aloud. [NOTE TO MODERATOR: SWITCH ORDER THAT MESSAGES ARE PRESENTED IN FOR EACH GROUP]

[DISTRIBUTE MESSAGE 1: FOR ALL CHILDREN - YELLOW]

• MESSAGE 1: FOR ALL CHILDREN.

Talk with your child’s doctor at every check-up about milestones.

1. What is the main idea or message of this statement?

2. Who is this message for? Why?

3. Is there anything in this statement that’s unclear or that you don’t understand?

4. This message asks parents to talk to their doctor at every check-up. Would that work for you?

• How often do you currently talk to your child’s doctor about milestones?

• Would a message like this encourage you to have a discussion with your child’s doctor more frequently or regularly? Why or why not?

• What would motivate you to talk with your child’s doctor at every check-up about milestones?

5. What do you like about this message? What don’t you like? Do you have any ideas about how to improve this message or say this differently? If so, how?

Okay, now we are going to look at another message.

[DISTRIBUTE MESSAGE 2: FOR CONCERNED PARENTS - BLUE]

• MESSAGE 2: FOR CONCERNED PARENTS.

You know your child best.

If you are concerned about your child’s development, talk to your child’s doctor about milestones and ask about developmental screening.

If you or your doctor is still concerned:

• Ask the doctor for a referral, and

• Contact your state’s early intervention program (for children under 3) or public school (for children 3 and older). Find the phone number for your state’s early intervention program by visiting www.cdc.gov/concerned.

Don’t wait. Acting early can make a real difference!

1. What is the main idea or message of these statements?

• Who is this message for?

• What, if anything, is this message trying to get parents to do?

2. Is there anything in this message that is unclear or that you do not understand?

• What parts of this message do you not understand? Which parts are confusing?

3. What do you think they mean by “developmental screening” in the second line?

4. What do you think the last line of this message (Don’t wait. Acting early can make a real difference!) means?

• What do you think is meant by the phrase “can make a real difference”?

5. This message encourages parents to ask their doctor for a referral AND contact the state early intervention program. Is this something you would do, ask for a referral AND contact the state early intervention program? Why or why not? If not, what would make you more willing to take both of those steps at the same time?

5. Overall, what did you like most about this message? What did you like the least? Is there anything you would say differently or add to this message to make it better? If so, what?

Now we’re going to look at another version of this message.

[DISTRIBUTE MESSAGE 3: FOR CONCERNED PARENTS - PINK]

• MESSAGE 3: FOR CONCERNED PARENTS.

You know your child best.

If you are concerned about your child’s development, talk to your child’s doctor about milestones and ask about developmental screening.

If you or your doctor is still concerned:

• Ask the doctor for a referral, and

• Contact your state’s early intervention program (for children under 3) or public school (for children 3 and older). Find the phone number for your state’s early intervention program by visiting www.cdc.gov/concerned.

Don’t wait. It’s never too late, but acting early can make a real difference.

You’ll notice that the only difference between this message and the one we just looked at is the very last line (Don’t wait. It’s never too late, but acting early can make a real difference.), so that’s what we’ll focus on here.

1. What do you think the last line of this message (Don’t wait. It’s never too late, but acting early can make a real difference.) means?

• Does the meaning of this line differ from the meaning of the last line of the previous message—Don’t wait. Acting early can make a real difference! How?

• What do you think is meant by the phrase, “It’s never too late”? Do you think it helps or improves this message? Why or why not?

• Is there anything in this statement that is unclear or that you don’t understand?

• What do you think it meant by the phrase “can make a real difference”?

Now we’re going to look at one final version of this message.

[DISTRIBUTE MESSAGE 4: FOR CONCERNED PARENTS - ORANGE]

• MESSAGE 4: FOR CONCERNED PARENTS.

You know your child best.

If you are concerned about your child’s development, talk to your child’s doctor about milestones and ask about developmental screening.

If you or your doctor is still concerned:

• Ask the doctor for a referral, and

• Contact your state’s early intervention program (for children under 3) or public school (for children 3 and older). Find the phone number for your state’s early intervention program by visiting www.cdc.gov/concerned.

Don’t wait. Acting early can make a real difference in helping your child learn new skills.

Again, the only difference between this message and the previous ones we just looked at is the very last line, so that’s what we’ll focus on here.

1. What do you think the last line of this message (Don’t wait. Acting early can make a real difference in helping your child learn new skills.) means?

• Does the meaning of this line differ from the meaning of the last line of the previous messages-- Don’t wait. Acting early can make a real difference! and Don’t wait. It’s never too late, but acting early can make a real difference.? How?

• Is there anything in this statement that is unclear or that you don’t understand?

• What do you think is meant by the phrase “can make a real difference in helping your child learn new skills”? What do you think “new skills” means?

2. Now, let’s compare the 3 messages we reviewed today. Of the three, which of the following statements do you prefer [MODERATOR ASKS FOR A SHOW OF HANDS FOR EACH]:

Don’t wait. Acting early can make a real difference!

Don’t wait. It’s never too late, but acting early can make a real difference.

Don’t wait. Acting early can make a real difference in helping your child learn new skills.

[FOR THE STATEMENT RECEIVING THE MOST VOTES]: Why do you like this message best?

[FOR THE STATEMENT RECEIVING THE LEAST VOTES]: Why do you like this message the least?

3. CDC is trying to encourage parents who have concerns about their child’s development to get connected to screening and early intervention services in their state. Thinking about some of the reasons you listed as to why a parent might not “act early” [MODERATOR REFERS TO EASEL LISTING BARRIERS TO ACTING EARLY], do you think the messages we presented today are persuasive or encouraging enough to influence you to take action? Why or why not?

• Which of the 3 final message statements do you think is most persuasive or encouraging?

• Is there anything else CDC could say here or say differently to encourage parents, especially those who might not “act early”?

5. Conclusion [5 minutes]

1. Is there anything else you want to say on these topics beyond what we’ve already discussed? Any questions?

Thank you for being here today and participating! Your responses have been very helpful.

The public reporting burden of this collection of information is estimated to average 2 hours per response, including the time for reviewing instructions, searching existing data sources, gathering and maintaining the data needed, and completing and reviewing the collection of information. An agency may not conduct or sponsor, and a person is not required to respond to a collection of information unless it displays a currently valid OMB control number. Send comments regarding this burden estimate or any other aspect of this collection of information, including suggestions for reducing this burden to - CDC/ATSDR Reports Clearance Officer; 1600 Clifton Road NE, MS D-74, Atlanta, Georgia 30333 ATTN: PRA (0920-0919)