PART I: Information Sheet
Introduction
The urban Indian organization that puts on the Gathering of Native Americans (GONA) that your child is attending collects information from your child to help them provide better services to your child and to the larger community.
They would like to request that you allow your child’s survey information be included in a study. Completing the study surveys is expected to take no more than 30 minutes.
The study will share data with the California Department of Public Health to see how the GONA works and measuring access to mental health services.
Completing the surveys for use in the study is voluntary. Your child does not have to participate if you or your child do not want to and your child can still participate in the GONA and any other services that are offered by Native American Health Center.
The purpose of this form is to inform you about what information we are asking from your child in the surveys and to give you a choice about if you want your child to participate.
If some sections are confusing or if there are any words that you do not understand, please ask. We are here to help you understand what this study is about and to decide if you want your child to participate. This is a volunteer study and giving parents and youth a choice is very important.
Purpose of the study
The primary purpose of the study is to understand more about how GONA helps Native people be healthy and resilient (strong/tough/quick to recover).
When we will collect surveys
We will ask youth to complete surveys at the beginning of the GONA as well as at the end of the GONA and then six months later. Surveys at the beginning and end of GONA will be done in person and on-site. The follow-ups will either be done in person, over the phone, by mail, or on the Internet. If your child completes the survey online or by mail, they will be asked for an address to send compensation of their choosing (gift card or other item). Additionally, they can pick up their incentive at Native American Health Center at 3124 International Blvd., Oakland, CA. If your child needs someone to help them read the questions on the survey, one of our trained staff will help them.
Participant Selection
We are asking all GONA participants to participate in the surveys and everyone is being given options for how, if at all, they want their survey information to be used.
Voluntary Survey Participation
Your youth’s participation in completing the surveys is entirely voluntary. If your youth chooses to participate and changes their mind during the GONA or afterwards they may withdraw and stop at any time. Youth may also choose to continue participating but not answer all questions that are asked.
Risks of Participating in the Study
Youth will be asked to complete surveys about traditional cultural activities/events and their feelings about their life and future. Most participants find that this is pleasant as the surveys are mostly positive. However, some participants may experience a sense of loss if they are not involved in cultural activities or have never had the opportunity to participate in them. This risk is considered to be small.
There is a risk that some of your child’s answers will accidentally be viewed by others. We make every effort to avoid this, as we describe below, but there is always a small chance that this will happen.
There also may be questions that make youth feel uncomfortable, such as how your youth identifies their own gender.
Benefits of Participating in the Study
The GONA takes place whether or not you choose to allow your youth to participate. As a result, youth will receive the same benefits as all others. Participating in the GONA study will involve completing the surveys on Culture and hope for the Future.
Participating in the project will help us learn more about the positive benefits of the GONA. One potential benefit from this project is that it could result in some Native American practices and ceremonies, such as the GONA, becoming more accepted by non-Native leaders and funders. As a result, your participation may provide funding and benefits for other Native Americans in the future. The more people that participate in the study, the stronger the study becomes.
Reimbursements for Survey Participation
We will ask youth survey questions on the first and last day of the GONA. On the last day of GONA, we will provide youth with a monetary incentive valued between $10-$20 for participating in the surveys. Please connect with Native American Health Center Youth Services staff for more information. To understand how long the benefits last from attending a GONA, we will also re-contact you and your youth 6-months after the GONA. At this time we will offer an incentive valued at the $20-$25 amount for your youth’s time in answering the questions in person, by mail, or on the internet. If your child completes the survey online or by mail, they will be asked for an address to send compensation of their choosing (gift card or other item). Additionally, they can pick up their incentive at Native American Health Center.
Confidentiality
As your child fills out the surveys, we urge him or her to keep the answers private by not showing them to others, and to honor the confidentiality of the others who take the survey by not looking at their responses. The survey information that is kept confidential. Your youth’s name will not be included on any of the survey forms. All surveys will have an assigned unique number on it instead of your youth’s name. Information tying your youths name to their unique number will be stored in a locked room in a locked cabinet that is separate from the survey. We also take measures to make sure this information is locked in lockboxes in separate locations at the GONA event. The information about your youth’s name and unique number is only accessed by a few trained professional staff at your urban Indian health organization. These professionals keep your youth’s information confidential.
Sharing the Study Results
None of your youth’s personal or individual information will be shared with anyone that is not a key trained professional staff that is there to serve your youth. For the study, only grouped information summarizing all GONA study participants as a whole will be reported. The findings from the study will be shared with you through the local urban Indian organization that conducted the GONA you attended. We will also share grouped information with the California Department of Public Health to demonstrate the effectiveness of the GONA. We also plan to share the grouped results with other interested Native American communities and organizations throughout the United States by sending reports and through publications and attending conferences.
Who to Contact about the Study
If you have any questions you may ask them now or later, even after the study has started. If you wish to ask questions later, you may contact any of the following:
Dr. Paul Masotti, Native American Health Center
Role: Lead Study Contact for the Native American Health Center, Inc.
3124 International Blvd.
Oakland, CA 94506
paulm@nativehealth.org 510-434-5448
This proposal has been reviewed and approved by the Pacific Institute for Research and Evaluation (PIRE) Institutional Review Board (IRB). If you wish to find about more about the IRB or have questions about your child’s rights as a research participant, you may contact:
Elizabeth Waiters, PIRE (ewaiters@prev.org or 510-883-5780). This project has also been reviewed by the Community Advisory Board at the Native American Health Center and by staff at the collaborating Native American Health organizations indicated earlier in this document.