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This study has been APPROVED by the University of Hawai’i Internal Review Board.

You may contact the UH Human Studies Program at 808.956.5007 or [email protected] to discuss problems, concerns and questions, obtain information, or offer input with an informed individual who is unaffiliated with the specific research protocol. Please visit http://go.hawaii.edu/jRd for more information on your rights as a research participant.

This page shows the Informed Consent form and the information needed for you to participate in our study with a few areas explained in more detail.

University of Hawai‘i
Survey Consent Form with Further Explanations

Brian Kajiyama, M.Ed., Principal Investigator, Mahiko, Joy, Ph.D.,and Dantzig, Stephen, Psy. D.

Project Title: Impact of Aging with Cerebral Palsy in Hawai’i and Beyond

This is a modified version of the Informed Consent form on the surveys. PLEASE contact us at [email protected] of you want assistance with the Informed Consent.

Aloha! You are being asked to participate in a research study conducted by Brian Kajiyama, M.Ed., Joy Mahiko, Ph.D. and Stephen A. Dantzig, Psy. D, in association with the United Cerebral Palsy Association of Hawai’i at the University of Hawai‘i. Dr. Dantzig works for the United Cerebral Palsy Association of Hawai’i.

What am I being asked to do?

If you participate in this project, you will be asked to fill out a series of 7 surveys asking about the way cerebral palsy has changed how you experience life as you age. The surveys will ask you about how you have experienced changes over the last 15-years in the following areas: physical changes, changes in your experience of pain, changes in your communication needs, changes in your ability to take care of personal needs, information about your ability to access medical and/or mental health services, your concerns about the future, and what resources you would like to access. You do NOT need to complete all 7 surveys at one time, and we will assist you if you want. This consent covers all 7 surveys*.

* There are a total of seven (7) surveys broken down into three questionnaires on Google Forms (PLEASE contact us at [email protected] of 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.

Taking part in this study is your choice.

Your participation in this project is completely voluntary. You can choose to take part or you can choose not to take part in this study. You also can change your mind and stop participating at any time. If you stop being in the study, there will be no penalty or loss to you*.

* If you begin to feel uncomfortable with any of the questions then please stop and hit “submit form” to record what you have stated up to that point. We will not send the remaining surveys if we receive a questionnaire that you have stopped responding to. You may also simply choose not to submit any responses.

Why is this study being done?

Two of the researchers (Kajiyama and Dantzig) are experiencing the effects of aging with cerebral palsy. The purpose of this project is to gain a better understanding of the experiences and needs of people as they age with cerebral palsy. The results will be shared with the State of Hawai’i Department of Health and other organizations that serve the needs of people with disabilities in an attempt to increase the services available. We are asking you to participate because your experiences and feelings are what will hopefully lead to that better understanding and better access to needed services*.

* 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 will happen if I decide to take part in this study?

The study will consist of 7 surveys of different lengths that include multiple choice and open-ended questions. The total time commitment is estimated at two hours, but the surveys do not need to be completed at one time*. The survey questions will include questions like, “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

If you answered b or c to the last question, what level of pain do you experience?

  • Minimal (0-2 out of 10)
  • Mild (3-4 out of 10)
  • Moderate (5-6 out of 10)
  • Severe (7-8 out of 10)
  • Unbelievable (9-10 out of 10)

Have you experienced an increase in pain?

  • Within the last five years
    1. Minimal (0-2 out of 10)
    2. Mild (3-4 out of 10)
    3. Moderate (5-6 out of 10)
    4. Severe (7-8 out of 10)
    5. Unbelievable (9-10 out of 10)”

The survey is accessed on a website to which I will provide you a link. We will assist you in completing the surveys if you wish. We do not know how many people will participate in this study.

* Each of the three questionnaires is expected to take about 30 minutes to complete.

What are the risks and benefits of taking part in this study?

I believe there is little risk to you for participating in this research project. You may become stressed or uncomfortable answering any of the survey questions. If you do become stressed or uncomfortable, you can skip the question or take a break. You can also stop taking the survey or you can withdraw from the project altogether*.

* If you begin to feel uncomfortable with any of the questions then please stop and hit “submit form” to record what you have stated up to that point. We will not send the remaining surveys if we receive a questionnaire that you have stopped responding to. You may also simply choose not to submit any responses.

There will be no direct benefit to you for participating in this survey. However, the results of this project may help provide you with better access to needed services as the results become known. You may also choose to have the United Cerebral Palsy Association of Hawai’i maintain your information for outreach purposes. You will always be able to contact the United Cerebral Palsy Association of Hawai’i the United Cerebral Palsy Association of Hawai’i at any time. The researchers will ask for only your zip code, gender, general age range and type of cerebral palsy (if known).

In-Person Research Risk:

For the safety and protection of yourself, the research team and others, we strongly recommend that you wear a well-fitting mask that covers nose and mouth (CDC guidance) during each research-related encounter to reduce the spread of common respiratory diseases such as the Rhinovirus (common cold), the Influenza (Flu), Respiratory Syncytial Virus (RSV), and Coronavirus Disease of 2019 (COVID-19). Members of the research team will wear a well-fitting mask that covers nose and mouth at all times.

Privacy and Confidentiality:

We will not ask you for any personal information, such as your name or address*. Please do not include any personal information in your survey responses. Surveys will be completely anonymous and no personal data beyond that described above will be kept by the researchers. Individual responses will be kept for 6 months past the close of this study. Combined data will be maintained. Other agencies that have legal permission have the right to review research records. The University of Hawai’i Human Studies Program has the right to review research records for this study.

* Unless you give permission for the United Cerebral Palsy Association of Hawai’i to collect and keep that information.

Compensation:

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. 

Future Research Studies:

Even after removing identifiers, the data from this study will not be used or distributed for future research studies.

Questions: If you have any questions about this study, email my co-researcher at [email protected].

You may contact the UH Human Studies Program at 808.956.5007 or [email protected] to discuss problems, concerns and questions, obtain information, or offer input with an informed individual who is unaffiliated with the specific research protocol. Please visit http://go.hawaii.edu/jRd for more information on your rights as a research participant.

Keep a copy of the informed consent for your records and reference.

Going to the first page of the survey will be considered your consent to participate in this study.

Mahalo!

–UH Form 544

Informed Consent:

Have you seen, understand and agree to the Informed Consent form above?

Yes—please continue with the next question

No—please simply close the survey and we thank you for your time.

Would you like the United Cerebral Palsy Association of Hawai’i to keep your contact information for any outreach programs or updates on services available? All information will be kept strictly confidential.

Yes, please keep my information for outreach and information on services available

No, I just want to be a part of this study.

Demographics

What is your zip code?

What is your gender?

___ Male

___ Female

___ Prefer not to say

General age range

___ 20-39 years of age

___ 40-59 years of age

___ 60 years of age or older

What type of cerebral palsy do you have?

___ Spastic cerebral palsy

___ Dyskinetic or athetoid cerebral palsy

___ Ataxic cerebral palsy

___ Mixed cerebral palsy

___ I don’t know

Are you

The person with cerebral palsy

A caregiver