We are excited to announce that we are extending our PHACE Photovoice Project and inviting all PHACE Syndrome Community members to submit photos.
The goal of the project is to use photos and stories to learn more about the experiences of individuals affected by PHACE Syndrome. You can visit the PSC website at any time to submit a photo that captures what it is like to have or care for someone with PHACE Syndrome. With each photo, you’ll be asked to write a short journal entry describing the photo and why it is meaningful to you.
With your permission, the photos and stories we collect may be displayed on the PSC website, posted on PSC social media, and featured in the PSC newsletter. You will also be asked if you give permission for your photo to be used in research publications or presentations and displayed at events such as the PSC Family Conference.
If you would like to participate, click here to sign the consent form and sign-up to participate.
What is Photovoice?
Photovoice is a collective storytelling process in which people use photographs to describe their environment and experiences and to express their thoughts about them. The goal of this project is to use photos to learn more about the experiences of individuals affected by PHACE Syndrome.
If you choose to participate, you and/or your child will take photos that represent what it is like to live with or care for someone with PHACE Syndrome. What you take photos of is entirely up to you! Your photos might answer these questions:
What is it like to live with or care for someone with PHACE?
What do I want to tell other people about PHACE?
What do I wish my or my child’s doctors knew about living with PHACE?
How does PHACE affect me or my child at places like home, school, or work?
What are my hopes for my or my child’s future?
With your permission, the photos collected for this study will be displayed on the PSC website and social media pages.
Here are a few examples of Photovoice projects like ours:
You will be receiving an e-mail soon with more information and a link to sign-up for the project. All participants will be invited to attend a virtual information session via Zoom on May 27 at 8:00 pm eastern time.
This project was approved by the Ohio University Institutional Review Board [20-X-43]
Photovoice Project FAQ
What kinds of photos should I submit?
Anything you want! Submit pictures of anything that represents what it is like to have or care for someone with PHACE Syndrome. The pictures can be of everyday life, relationships, places, events, and objects or they can be of particularly extraordinary or unique
circumstances that you want to highlight.
Here are some questions that might help you decide what to photograph:
What is it like to live with PHACE?
What do I want to tell other people about living with PHACE?
What do I wish my doctors knew about living with PHACE?
How does PHACE affect me at places like home, school, or work?
What in my life or community is the most rewarding or challenging?
What makes me feel happy/excited/joyful?
What makes me feel sad/scared/angry?
What are my hopes for the future?
Can I take pictures of other people?
Sure! Just be sure that you have them (or their parent) sign the photo release form and that you upload it with the picture.
Can my parent/guardian help me take photos?
Absolutely! We encourage you to work with your parent or guardian to take photos that are meaningful to you.
How often can I upload photos?
As often as you’d like! You can upload them one-by-one, a few at a time, or all at once. Click here to submit a photo!