Parents and Caregivers Resource Questionnaire Form

1
Personal Information: You are most welcome to remain anonymous. We reconmend you dont share anything that will make your child identifiable, as their health, wellbeing, and privacy is paramount. If you would like to keep in touch, access resources and be made aware of any future developments of peer support for parents, please share your email address with us on the next slide.
2
Are you the parent, caregiver or whānau (extended family/cultural family) member of someone with a variation of sex characteristics?* This field is required.
yes
no
dont know
3
Age of child
4
Before your child was diagnosed, how much did you know anything about VSC?
5
How were you informed of your child's diagnosis?
Huge
Large
Normal
Small
Ok
Ok
6
Were you satisfied with the way you were informed with your child's diagnosis? If so, why?
7
Were you unsatisfied with the way you were informed of your child's VSC diagnosis? If so, why?
8
When you think back to the time of your child's diagnosis, is there anything you wish you knew then, that you know now?
9
If you answered yes to the previous question, what would you say to your past self if you could?
10
What parts of this journey has been a positive experience since your child's diagnosis?
11
What parts of this journey have been negative, or challenging since your child's diagnosis?
12
Can you share some thing on reflection that you wish the doctors, your family or friends knew at the time?
13
What have you found helpful when trying to understand your child's VSC, outside of healthcare providers? For example; additional or alternative information sources, information found on the internet, second opinions or peer-support networks?
Huge
Large
Normal
Small
Ok
Ok
14
If there was a VSC parents and caregivers support group in New Zealand, would you consider joining? If so, what would you hope to see or experience within this peer support environment?
15
Is there anything you think would be vital to include in a resource for parents and caregivers, especially for those who just received their child's VSC diagnosis?
Huge
Large
Normal
Small
Ok
Ok
16
Is there anything else you would like to share with us?Thank you so much for your participation and engagement in this questionnaire today.
Huge
Large
Normal
Small
Ok
Ok
17
Contact details You are most welcome to share as much or as little contact information with us. If you would like to receive more information, or join a parents support group (NZDT), please eave your details here.
Name
Email address
Phone contact
Should be Empty: