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Required format:

3RiCUujcyZUhZLLaLwSpTdM9AWTBgcDCfdTxRZDG5PwuuzMD5e9FZaAifi93zuYvH2wxSiwAGBtGv3Jbyg9ubidgZXISxEKQoGSzwgf77QAP7WkITT42

NF1 Parent Needs Assessment

This short survey is being conducted by researchers at the University of Minnesota to better understand parent views about the social, emotional, behavioral, and academic needs of their children with NF1.

We are developing intervention and parent coaching programs to support children's development and mental health.

What is the age of your child with NF1?

* must provide value

What is your child's gender?

Other - Please Specify:

What state do you live in?

If residence is not in the US, please specify country:

Do you have concerns for your child in any of the following areas (check all that apply)?

Learning/academics (ability to learn, remember, or understand information; difficulties with reading/writing/math; completing homework)

Emotions (anxiety, sadness, irritability, or mood swings)

Social development (ability to get along with others, making and keeping friends, or understanding social situations)

Behaviors (defiance, aggression, disobedience, impulse control, outbursts, or tantrums)

Attention problems (focusing/concentrating, managing activity levels, or planning/organization)

Health Behaviors (sleep, physical activity, screen time, or healthy eating)

Other

Other (please describe your area of concern):

How important is it to you that you receive help for your child in Learning/academics?

How important is it to you that you receive help for your child in the area of Emotions?

How important is it to you that you receive help for your child in the area of Social Development?

How important is it to you that you receive help for your child in the area of Behaviors?

How important is it to you that you receive help for your child in the area of Attention Problems?

How important is it to you that you receive help for your child in the area of Health Behaviors?

How important is it to you that you receive help for your child in the Other area you mentioned?

A parent coaching intervention is a program that provides guidance to parents (either in person or remotely, by phone or web-conferencing) to help them support their child in the areas you identified above. Would you have interest in participating in this type of program?

* must provide value

Not interested

A little interested

Somewhat interested

Very interested

Extremely interested

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If you were invited to participate in a parent coaching intervention, what do you see as possible barriers that would keep you from participating?

Time constraints

Cost of program

Need to travel

Family responsibilities (other family activities that may conflict, lack of childcare)

Other

Other (please describe):

Which would be the best method for you to participate (pick one)?

In-person meetings at a nearby hospital/clinic

Telephone

Internet videoconferencing (Facetime, Skype, etc.); requires computer, tablet or smartphone

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Would you prefer individual sessions with a coach or group sessions (pick one)?

Individual sessions

Group sessions with parents/caregivers of children with NF1

No preference

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If a behavioral health intervention were offered in a group format, which of the following options would you consider:

I would be open to participating in an intervention involving families affected by NF1 as well as families that have a child with a similar health conditions (e.g., Noonan syndrome) who are experiencing similar behavioral health concerns.

I would prefer participating in an intervention involving only families affected by NF1.

No preference.

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In this section you may enter to win a drawing to thank you for participating in this survey. You may also indicate here if you are willing to allow our research team to contact you regarding future research and/or to get your input on how to shape future therapeutic programs for children with NF1. Please click on any of the options that you are interested in below (you may choose more than one):

I would like to be entered into a random drawing for a Target gift card. I understand that I do not have to agree to be contacted by checking either of the boxes below to enter this drawing. However, if I win the drawing, I will be contacted by the research team to obtain my mailing address to be sent the gift card prize.

I am willing to be contacted by the researchers to participate in a 1-hour "focus group" discussion to share more about my child's social-emotional, behavioral, and academic life and shape the development of new therapeutic programs for children with NF1.

I am willing to be contacted if there are any opportunities to participate in research to support the social, emotional, behavioral, and academic success of children with NF1.

No thanks.

Name:

Phone Number:

Email address:

Is there any other information you would like to provide with regard to needs for developmental, behavioral, or mental health interventions for your family?

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You have selected an option that triggers this survey to end right now.

To save your responses and end the survey, click the 'End Survey' button below. If you have selected the wrong option by accident and/or wish to return to the survey, click the 'Return and Edit Response' button.