There is clearly a humanitarian need to continue to research the effects of, and potential interventions, for those who are aging with cerebral palsy. Our team, in partnership with the United Cerebral Palsy Association of Hawaiʻi, is launching a new research project to better understand the experiences, needs, and challenges of aging with cerebral palsy. We would love for you to be seen, heard and supported. Please join us if you are an adult with cerebral palsy and/or if you care for an adult with cerebral palsy. Your responses will help us tell your story about what aging with cerebral palsy looks and feels like across different stages of life, what resources are helping or missing, and how we can teach our communities to shape better care, policies, and support systems for adults with cerebral palsy. Your voice matters. This is your opportunity to help create a more informed, compassionate future for adults with cerebral palsy. What are our goals?

• Learn from you how your bodies and abilities have changed, or are changing as you age and what resources you need for assistance.
• To use the information to research the availability of, or feasible establishment of the resources needed. The information (NOT personal) will be shared with The Hawai’i Department of Health and other organizations that may be able to help.
• IF YOU CHOOSE, then the United Cerebral Palsy Association of Hawai’i will safely keep your contact information for any future outreach opportunities. You are ALWAYS able to contact UCPA Hawai’i or your own local UCP office for assistance.

What to expect from the surveys:

There are a total of seven (7) surveys broken down into three questionnaires on Google Forms (PLEASE contact us at [email protected] if you want assistance with the forms). Each questionnaire is expected to take less than 30 minutes. You will receive the link and QR code for the second questionnaire after we receive your first completed questionnaire. The third will follow after we receive your second survey.

The first questionnaire will contain two surveys asking about changes in your physical abilities and any increases in your pain. The second questionnaire is a long survey about any changes in your adaptive or everyday life skills. The third questionnaire contains three short surveys about any changes in your communication skills, abilities to get medical or mental health services and your concerns about the future.

Please ignore the request edit access button below if you see one. It is there because we had to use an outside link to give you access to the surveys. It is just a part of Google Forms. You do not need to use the edit button to complete the surveys. Mahalo!

Here is a sample question:

“What are you noticing about your body as you age compared to 5 years ago?

• Tight muscles (spasticity)
  1. 😀 Not at all
  2. 😐 Some
  3. 😭 Almost all of the time
• Lack of balance (ataxia)
  1. 😀 Not at all
  2. 😐 Some
  3. 😭 Almost all of the time”

“Do you experience any pain now?

1. 😀 Not at all
2. 😐 Some
3. 😭 Almost all of the time

A response of “Not at all” or a smiling emoji means that you are not experiencing what the question asks. A response of “Almost all of the time” or a sobbing emoji means that you experience this a lot.

We do not see any risk to you for participating but stop and hit “submit form” if at any point you feel uncomfortable with the questions. We are thankful for any help you can give.

We send “much mahalos” (many thanks) for your help with this important project. We are pleased to share a folder of 16 images from all over Hawai’i that were created and personally chosen by Stephen Dantzig, Psy.D. Stephen is one of the researchers on this project and has cerebral palsy. You may use the images for your computer/device as a wallpaper or screen saver. You have permission to enjoy his art for all personal reasons. Click the link in the INFORMED CONSENT section of the first questionnaire to access and download the images. The images are yours to keep whether you are able to complete the surveys or not. We just thank you for being here! No commercial rights are transferred.