Trauma, Emotions, and Autism Spectrum Disorder

Thank you for your interest in this research study. Below is a consent form informing you as a subject. After you click “agree” at the bottom of the consent form your questions will appear.  Thank you! 

UNIVERSITY OF SOUTH DAKOTA
Informed Consent for Participation in Research 

Title of Project: Parent Reactions to a Diagnosis of Autism Spectrum Disorder:  The Role of Traumatic Stress and Emotion Regulation

    Principle Investigator: S. Jean Caraway, PhD

                                           414 East Clark Street, Vermillion, SD 57069

                                           605-677-5353

                                           Jean.Caraway@usd.edu

   Other Investigators:     Eric Kurtz, PhD

                                           Tanya Ochsner, B.A.

Purpose of the Study: The purpose of this research study is to learn about parental experiences as they go through the diagnostic process for Autism Spectrum Disorder (ASD).  We are interested in learning how parents react to their child's diagnosis of ASD, and whether they see this as a traumatic event. In addition, the study will examine how emotion regulation may be related to parent experiences and reactions during the diagnostic process.  Results from this study will help inform diagnostic clinics and processes to better provide client- and family-focused care.  It is hoped that the results of this study will help inform mental health and medical professionals to better assist your whole family throughout and following the diagnostic process.

Procedure: You will complete three questionnaires.  The questionnaires will take you 30 minutes to complete. The questionnaires will be completed on this web site.

Some of the questions will ask for information about your child who has been diagnosed with Autism. If you are not comfortable reporting information about this child, you are free to not participate or not answer those questions.

Risks: The risk for participating in this research is minimal and does not exceed the risk you encounter in your daily life. It is possible that the questions may cause you to feel sad or upset due to reflection.

If for any reason you feel the need to talk to someone immediately you can call the Lewis and Clark Behavioral Health Services in Yankton 24-hour crisis hotline at 1-800-765-3382.

Benefits: The direct benefits to you are minimal. However, in the future, this research will benefit families of children with Autism Spectrum Disorder. Your agreement to participate in this research will help to improve the mental health services offered to siblings and families of children with ASD. Moreover, the results from this study will be shared with South Dakota Parent Connection and University of South Dakota’s Center for Disabilities.

Duration: Your participation in the study will last approximately 30 minutes. You will need to visit the website only once. 

Statement of Confidentiality: If this research is presented or published, no information that would identify you or your child will be included. The results will be presented only in aggregate form, and information by which you could be identified will in no way be linked to your responses.

All of your questionnaire responses will be treated confidentially. Employees at USD’s Center for Disabilities or South Dakota Parent Connection will not have access to your responses. This study is not associated with the care you are being provided (or have been provided) at USD’s Center for Disabilities or South Dakota Parent Connection. Questionnaires will be stored in a locked file cabinet in the USD Clinical Psychology Program.

Right to Ask Questions: The researchers conducting this study are Jean Caraway, PhD and Tanya Ochsner, B.A. If you have any questions please contact them before initiating the study. Please contact Prof. Caraway or Ms. Ochsner at (605) 677-5353 during the day. If you later have questions, concerns or complaints about the research you are also encouraged to contact them.

If you have questions regarding your rights as a research subject, you may contact The University of South Dakota Institutional Review Board at (605) 677- 6184. You may also call this number with problems, complaints or concerns about the research. Please call this number if you cannot reach research staff or if you wish to talk with someone who is an informed individual and is independent of the research team.

Compensation: No direct compensation will occur. However, if one decides to enter him/herself in a drawing, he/she may win an Amazon gift card.  There will be a raffle for five $20.00 Amazon gift cards.  If you would like to participate in the raffle you will be asked to supply your email address.

Voluntary Participation: You child do not have to participate in this research. You do not have to answer any questions you do not want to answer. You can stop your participation at any time without any penalty. You may refuse to participate or choose to discontinue participation at any time without losing any benefits to which you are otherwise entitled.

The investigators thank you for considering participating in this research project.

Please keep this form for your record or future reference.

You can set up an individual appointment to review the research before signing the consent form. If you have any questions or would like to discuss the research further before consenting, please contact Tanya Ochsner, B.A. at (605) 677-5353 to set up an appointment. If you fully understand the information and would like to participate in the research, please agree to the following statement before completing the questionnaires.

I have read, had explained to me, and understand the information contained in this informed consent form.

*1)
By clicking "I agree" I agree to participate in the research study.

Continue ONLY when finished. You will be unable to return or change your answers.