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Parent Questionnaire

Name *

First

Last

Email *

Your relationship to the child with a hand/arm difference

Child's Age and Grade *

Child's pronouns

She/her
He/him
They/them

Would you prefer to answer the questions below in an interview format?

If so, you will receive an email with an invitation to schedule an interview.

What is the nature of your child's hand/arm difference? How old is your child now? In what part of the country or world do you reside?

Did you know about the child's hand/arm difference before the child came into your life (e.g. via birth, adoption, marriage, etc.)

When did your child first notice his hand/arm difference (what age/circumstance) or, when did your child first ask you about the difference? How did you respond? Describe what happened.

Has your child ever been teased about her hand/arm? When/how often does it happen? How do/did you handle it?

In general, would you say that your child accepts his hand/arm? What does he say about his hand to others?

Does your child have a prosthesis(es)? Please describe it. When was it made, by whom, for what purpose, how does it function, does your child wear it, what was the process like having it made?

Has your child ever had pain in the different or "normal" hand? What seemed to trigger the pain? What did you do to relieve the pain?

What kinds of therapeutic services has your child had (for example, occupational therapy, physical therapy, psychotherapy, etc.)? What was the reason for these therapies? How helpful were they for your child? Would you use them again?

Has your child had surgery on her hand/arm? What type? Who performed the surgery? Please describe the benefits/improvements.

Are there any gadgets/devices that make your child's life easier? Please describe them.

Have you and your child ever been to a support group for children with hand/arm differences? Was that helpful? What was that like?

Does your child drive? Does s/he use any special controls to maneuver the car?

What do you wish you had known prior to having a child with a hand/arm difference?

What has been easier than you expected in raising a child with a hand difference? What has been more difficult?

Do you feel that you have/have had enough support while raising your child? What could have helped you more?

Would you be willing to be a mentor to families with a child with a similar hand/arm difference?

Yes
No
Maybe

Please share any additional concerns, information, or suggestions.

Readers of the website have requested photos of children with limb differences. Would you be willing to share photos of your child to be posted on the website (without name)?

Yes
No
Maybe

Many parents have inquired if there is anything that they can do to help develop this site. Please complete the questionnaire - thanks!

I try to respond to questionnaires individually, but due to time constraints I may not be able to. Also please check your employer's spam policy, to ensure that you will be able to receive my reply.

Just as a responsible medical doctor will not prescribe treatment over the Internet, neither will I offer therapeutic intervention by email. I appreciate your understanding!