Title of Research Study: Advance Care Planning in Young Adults

 

Researcher's Contact Information: Trina Queen, 404-625-3618, profqueen@gmail.com

 

You are being asked to take part in a research study about advance care planning in young adults. The information in this form will help you decide if you want to be in the study. Please ask the researcher if there is anything that is not clear or if you need more information.

 

Description of Project

I am conducting this research to learn more about and promote advance care planning in young adults. Advance care planning (ACP) is the process of communicating, identifying, and documenting who you want to make medical decisions on your behalf if you are unable to communicate those decisions yourself. I am seeking to identify barriers and provide education regarding this process.

 

Explanation of Procedures

If you agree to participate in this study:

• I will collect survey information through an online survey and an informational website.

• You will be asked to complete a survey before and after reviewing the informational website (approximately 20-30 minutes for each survey.

• You will be asked to review a website about advance care planning once a week for 6 weeks (approximately 10-20 minutes each week).

• All activities will be completed online.

 

Participation is voluntary. You can refuse to take part or stop at any time without penalty. Your decision to participate will have no effect on your courses or your grades.

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Risks or Discomforts

There are no known risks associated with participation in this study. There may be some discomfort associated with the topics discussed. If you experience any discomfort and wish to seek assistance, community resources will be listed in the website or you may contact the researcher for additional information.

 

Benefits

Benefits to you include the information gained from the informational website and access to the forms for communicating, identifying, and documenting your health care wishes. The information collected will help to better understand the needs of young adults with respect to advance care planning.

 

Compensation

All study participants may choose to be entered into a lottery for a chance to win 1 of 10 $50 Amazon gift certificates.

 

Confidentiality

I will take steps to protect your privacy, but there is a small risk that your information could be accidentally disclosed to people not connected to the research. To reduce this risk, I will give each participant a unique number code and remove any identifying information from the analysis. This list will be kept on a secure server for no longer than 1 year at which point the information will be removed and destroyed.

 

The de-identified data may be used in future research, but since the data will not contain any identifying information, it cannot be traced to any individual and further consent is not required.

 

Consent

Continued participation constitutes your consent to participate in this research study. If you wish to participate, please continue viewing www.acpforyoungadults.com.

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Research that involves human participants is carried out under the oversight of an Institutional Review Board.  Questions or problems regarding these activities should be addressed to the Institutional Review Board, A.T. Still University.

 

THIS PAGE MAY BE PRINTED AND KEPT BY EACH PARTICIPANT