Title of Study: Factors that Influence Parents Toward Early Diagnosis of Autism Spectrum Disorder (ASD)
You are asked to participate in a study by Debra Barrie, B.A. Honours, from the Psychology Department at the University of Windsor as part of her Master‟s degree in Child Clinical Psychology.
Dr. Marcia Gragg, Ph.D., C. Psych., is supervising the study. If you have any questions or concerns, please feel free to contact Dr. Gragg at 253-3000, ext. 2227.
PURPOSE OF THE STUDY
The study will look at what helps parents get an early diagnosis of ASD for their
children. I would like to know about your first concerns about your child‟s development, what you did to get professional help and what helped you obtain a diagnosis.
PROCEDURES
If you volunteer to participate in the study, you will be asked to:
1) Complete a questionnaire. This will take approximately 30 minutes. 2) Return the questionnaire and forms in the envelope provided. 3) Provide a copy of your child‟s diagnostic report.
POTENTIAL RISKS
You might feel mildly uncomfortable, anxious, or upset answering the questions as you recall the experiences you had obtaining a diagnosis for your child. You can access professional help by dialling the telephone code 211 or accessing the web address for 211Ontario http://www.211ontario.ca should you require help with psycho-emotional factors as a result of participating in the research.
POTENTIAL BENEFITS TO PARTICIPANTS AND/OR TO SOCIETY You will not directly benefit from taking part in the study. You will be giving us
important information that might help us help future parents and children with ASD get early diagnoses. It is our goal that this research will be published in a scientific journal. PAYMENT FOR PARTICIPATION
To thank you for participating in this study we offer you a five-dollar Tim Horton‟s gift card. To receive the gift card, we ask that you fill out a form with your name, phone number, and the address to where you want the gift card mailed. To protect your identity, we ask that you return the form sealed in the separate envelope that is provided along with the research questionnaire.
CONFIDENTIALITY
Any information gathered in connection with this study and that can identify you will remain confidential and will be disclosed only with your permission. An Identification number will be assigned to your questionnaire. A master list will be created linking your Identification number to your name to allow the researcher to locate your information should you choose to withdraw your information from the study. Your names will not appear in any reports of this study. Any forms or paperwork, such as the master list, containing your name or your my child‟s name will be kept in a secure place separate from the questionnaire. Diagnostic Reports will be shredded immediately after the diagnostic details have been verified. The researchers will keep the data from this study locked in a secure location for 7 years after the study is completed. All data and forms will be shredded or deleted after 7 years.
We may wish to use your information from this study in future research studies. Your information will still be confidential and identified only by an Identification number. PARTICIPATION AND WITHDRAWAL
You can choose whether to be in this study or not. If you volunteer to be in this study, you may withdraw at any time without consequences of any kind. You may also refuse to answer any questions you do not want to answer and remain in the study.
If you do not wish to take part in the study, simply discard the questionnaire. If you would like to participate, complete the questionnaire and return it sealed in the stamped, addressed envelope that is provided. If after completing and returning the questionnaire you decide to remove the information that you provided on the questionnaire from the study, please contact Debra Barrie at (519) 973-8746 or [email protected].
FEEDBACK OF THE RESULTS OF THIS STUDY TO THE PARTICIPANTS A brief summary of the results of the research will be available by September 30, 2010 and will be posted on-line at http://www.uwindsor.ca/autism
RIGHTS OF RESEARCH PARTICIPANTS
You may withdraw your consent at any time and discontinue participation without penalty. If you have questions regarding your rights as a research participant, contact: Research Ethics Coordinator, University of Windsor, Windsor, Ontario N9B 3P4, (519- 253-3000, Ext. 3948), email: [email protected]
SIGNATURE OF RESEARCH PARTICIPANT
I understand the information provided for the study Factors that Influence Parents Toward Early Diagnosis of Autism Spectrum Disorder as described herein. My questions have been answered to my satisfaction, and I agree to participate in this study. I have been given a copy of this form.
______________________________________ Name of Participant
______________________________________ _________________
Signature of Participant Date
SIGNATURE OF INVESTIGATOR
These are the terms under which I will conduct research.
_______________________________________ ___________________ Signature of Investigator Date
Appendix J
Appendix K
Appendix L
Script for Booking Telephone Questionnaire
Telephone Script: Factors Influencing Parents Toward Early Diagnoses of ASD (Script if arranging an interview time for Telephone Questionnaire)
Hi, may I speak with _________________ (say parents‟ names) please?
Hi, _________________(say parents‟ names).
This is _____________from the University of Windsor.
You talked with _________ (say name of person they gave their contact information to) at the ___________ (say name of event) about a study on Early Diagnoses of Autism Spectrum Disorder.
Can we arrange a time to do the questionnaire?
If NO –May we call you later?
If YES – We have ___________________________ [go through schedule with parent]. When
is a good time for you? Thanks, we‟ll call you then.
Appendix M
Script for Completing Telephone Questionnaire
Telephone Script: Factors Influencing Parents Toward Early Diagnoses of ASD (Script if completing Questionnaire by Telephone)
Hi, may I speak with _________________ (say parents‟ names) please? Hi, _________________ (say parents‟ names).
This is _____________from the University of Windsor calling about the Early Diagnoses study.
Is this still a good time to do the questionnaire? If NO – When may I call back?
If YES - Great!
CONSENT FOR AUDIO-RECORDING