Parent Experiences with Early Symptoms and Diagnos

Study Title: Parent Experiences with Early Symptoms and Diagnosis of Children with Asperger Syndrome
Researcher: Allison Shardell, MS
Email Address and Telephone Number: [email protected] , 740-405-8892
Research Supervisor: Dr. Alyssa Weiss-Quittner
Email Address: [email protected]

You are invited to be part of a research study. The researcher is a doctoral learner at Capella University in the School of Harold Abel School of Social and Behavioral Science. The information in this form is provided to help you decide if you want to participate. The form describes what you will have to do during the study and the risks and benefits of the study.
If you have any questions about or do not understand something in this form, you should ask the researcher. Do not participate in the study unless the researcher has answered your questions and you decide that you want to be part of this study.

WHAT IS THIS STUDY ABOUT?
The researcher wants to find out what people think about the development of infants who are later diagnosed with Asperger Syndrome. The researcher also wants to evaluate how parents of children with autism feel about their experiences with the autism diagnostic process.

HOW MANY PEOPLE WILL BE IN THIS STUDY?
About 100 participants will be in this study.

WHY AM I BEING ASKED TO BE IN THE STUDY?
You are invited to be in the study because you are:
• A parent of a child diagnosed with Asperger Syndrome or high functioning Autism.
• A resident of the United States.
All participants will be between18 and 65 years of age.
If you do not meet the description above, you are not able to be in the study.

WHO IS PAYING FOR THIS STUDY?
The researcher is not receiving funds to conduct this study.

WILL IT COST ANYTHING TO BE IN THIS STUDY?
You do not have to pay to be in the study.

HOW LONG WILL I BE IN THE STUDY?
If you decide to be in this study, your participation will last about 2 hours.

WHAT WILL HAPPEN DURING THIS STUDY?
If you decide to be in this study and if you sign this form, you will do the following things:
• give personal information about yourself, such as your age, gender, geographic location.
• complete a survey about your child’s development, early symptoms of autism, and your experiences with the autism diagnostic process.

While you are in the study, you must:
• Follow the instructions you are given.
• Tell the researcher if you want to stop being in the study at any time.

WILL BEING IN THIS STUDY HELP ME?
Being in this study will not help you. Information from this study might help researchers help others in the future.

ARE THERE RISKS TO ME IF I AM IN THIS STUDY?
No study is completely risk-free. However, we don’t anticipate that you will be harmed or distressed during this study. You may stop being in the study at any time if you become uncomfortable. You should be aware, however, that there is a small possibility that responses could be viewed by unauthorized parties (e.g. computer hackers because your responses are being entered and stored on a web server)

WILL I GET PAID?
If you participate, you will receive a $10 gift card to Amazon.com.

DO I HAVE TO BE IN THIS STUDY?
Your participation in this study is voluntary. You can decide not to be in the study and you can change your mind about being in the study at any time. There will be no penalty to you. If you want to stop being in the study, tell the researcher.

WHO WILL USE AND SHARE INFORMATION ABOUT MY BEING IN THIS STUDY?
Any information you provide in this study that could identify you such as your age, location, or other personal information will be kept confidential. Your email address or name will not be included on any of the surveys and will not be able to be linked to your answers. In any written reports or publications, no one will be able to identify you.

The researcher will keep the information you provide on a password protected flash drive in a locked file cabinet in Ohio and only the researcher and the research supervisor will be able to review this information.

Even if you leave the study early, the researcher may still be able to use your data. Because there is no way to link you to your survey answers, the researcher can not extract your data if you choose to withdraw your participation after the surveys are completed.

Limits of Privacy (Confidentiality)
Generally speaking, the researcher can assure you that she/he will keep everything you tell him/her or do for the study private. Yet there are times where the researcher cannot keep things private (confidential). The researcher cannot keep things private (confidential) when:

• The researcher finds out that a child or vulnerable adult has been abused
• The researcher finds out that that a person plans to hurt him or herself, such as commit suicide,
• The researcher finds out that a person plans to hurt someone else,

There are laws that require many professionals to take action if they think a person might harm themselves or another, or if a child or adult is being abused. In addition, there are guidelines that researchers must follow to make sure all people are treated with respect and kept safe. In most states, there is a government agency that must be told if someone is being abused or plans to hurt themselves or another person. Please ask any questions you may have about this issue before agreeing to be in the study. It is important that you do not feel betrayed if it turns out that the researcher cannot keep some things private.

WHO CAN I TALK TO ABOUT THIS STUDY?
You can ask questions about the study at any time. You can call the researcher at any time if you have any concerns or complaints. You should call the researcher at the phone number listed on page 1 of this form if you have questions about the study procedures, study costs (if any), study payment (if any), or if you get hurt or sick during the study.

The Capella Research Integrity Office (RIO) has been established to protect the rights and welfare of human research participants. Please contact us at 1-888-227-3552, extension 4716, for any of the following reasons:

• You have questions about your rights as a research participant.
• You wish to discuss problems or concerns.
• You have suggestions to improve the participant experience.
• You do not feel comfortable talking with the researcher.

You may contact the RIO without giving us your name. We may need to reveal information you provide in order to follow up if you report a problem or concern.

DO YOU WANT TO BE IN THIS STUDY?
By clicking the link below you agree to the following statement:

I have read this form, and I have been able to ask questions about this study. The researcher has answered all my questions. I voluntarily agree to be in this study. I agree to allow the use and sharing of my study-related records as described above.

I have not given up any of my legal rights as a research participant. I will print a copy of this consent information for my records.

Thank you very much for your time and support. Please start with the survey now by clicking on the Continue button below.