Informed Consent

California State University, Northridge
Participant Information Form


Title of Research: Caregiver Perspectives, Needs, and Desires Related to Distance Learning for their Children with Extensive Support Needs

Thank you for taking the time to answer some questions about the unique needs and desires of parents of children with extensive support needs during distance learning in the time of COVID-19. Your input is important and will help us to understand how to design accessible distance learning opportunities for families and students with extensive support needs.

You are being asked to participate in a research study. Participation in this study is completely voluntary. Please read the information below and ask questions about anything that you do not understand before deciding if you want to participate. The researchers listed below will be available to answer your questions.

RESEARCH TEAM
Samantha Gross Toews 
Assistant Professor
Department of Special Education
California State University, Northridge
samantha.toews@csun.edu
818-677-2596

Amy Hanreddy
Associate Professor
Department of Special Education
California State University, Northridge
amy.n.hanreddy@csun.edu
818-677-2522

Mailing address for all research team members: Department of Special Education
18111 Nordhoff St.
Northridge, CA 91330- 8265
PURPOSE OF STUDY
The purpose of this survey is to gain an understanding of the unique needs and desires of parents of children with extensive support needs during distance learning in the time of COVID-19. With the looming possibility of extended periods of distance learning, it is essential that the educators, school administrators, and those involved in teacher preparation understand parent needs and desires for the facilitation of successful distance learning. This information will help develop professional development for teachers, and prepare future teachers to design accessible distance learning opportunities for families and students with extensive support needs.

SUBJECTS
Inclusion Requirements
You are eligible to participate in this study if you are the caregiver to a person under age 22 who has significant support needs (e.g. intellectual disability, autism, and/or multiple disabilities) who participated in distance learning education as a result of school closures in spring 2020 or fall 2020. 

Exclusion Requirements
You are not eligible to participate in this study if you are not the caregiver to a person under age 18, if your child does not have significant support needs, or if your child did not participate in distance learning education as a result of school closures in either spring 2020 or fall 2020. Additionally, you are not eligible to participate in this  study if you are unable to access this survey in English or Spanish. Spanish survey is available at: (https://www.surveymonkey.com/r/COVID_Parent_Survey_ES)

Time Commitment
You are being asked to complete a survey that will take approximately 10-20 minutes to complete.
PROCEDURES
The following procedures will occur. Please note, your participation in this study is

completely voluntary and you may withdraw your consent at any time.

You are being asked to respond to a survey that will include Likert-type responses (scale of 1 – 5) along with written responses to open- ended questions. You may skip any question you do not feel comfortable responding to.

On the final page of the survey you will have an opportunity to follow a second survey link where you will have the opportunity to provide your email for you to volunteer to participate in a 1 hour interview about your experience with distance learning. The interview is completely voluntary and you can choose to complete the survey but not the interview. The interview will be recorded and you will be free to decline to respond to any question.

Benefits to Others or Society

This study is likely to result in improved understanding of the unique needs and desires of parents of children with extensive support needs during distance learning in the time of COVID- 19. Potential outcomes of this study are (a) improved training for teachers who are serving students with significant support needs via distance learning and (b) improved preparation for future teachers who are learning to serve students with significant support needs.

If this survey causes you any emotional distress, here are some of the resources you can find in the links above to get immediate help in a crisis.
-Call 911
-Disaster Distress Helpline: 1-800-985-5990 (press 2 for Spanish), or text TalkWithUs for English or Hablanos for Spanish to 66746. Spanish speakers from Puerto Rico can text Hablanos to 1-787-339-2663.

-National Suicide Prevention Lifeline: 1-800-273-TALK (8255) for English, 1-888-628-9454 for Spanish
-National Domestic Violence Hotline: 1-800-799-7233 or text LOVEIS to 22522
-National Child Abuse Hotline: 1-800-4AChild (1-800-422-4453) or text 1-800-422-4453
-National Sexual Assault Hotline: 1-800-656-HOPE (4673)
-The Eldercare Locator: 1-800-677-1116
-Veteran’s Crisis Line: 1-800-273-TALK (8255) or Crisis Chat or text: 8388255
Benefits to Others or Society
This study is likely to result in improved understanding of the unique needs and desires of parents of children with extensive support needs during distance learning in the time of COVID-19. Potential outcomes of this study are (a) improved training for teachers who are serving students with significant support needs via distance learning and (b) improved preparation for future teachers who are learning to serve students with significant support needs.

ALTERNATIVES TO PARTICIPATION
The only alternative to participation in this study is not to participate. There is no requirement to participate in this study, your participation is completely voluntary.

COMPENSATION, COSTS AND REIMBURSEMENT
Compensation for Participation
There is no compensation provided for your participation in this project.

Costs
There is no cost to you for participation in this survey.

Reimbursement
There is no reimbursement associated with completing this survey.

WITHDRAWAL OR TERMINATION FROM THE STUDY AND CONSEQUENCES
You are free to withdraw from this study at any time. If you decide to withdraw from this study, you should notify the research team immediately.


CONFIDENTIALITY
Subject Identifiable Data
No identifiable information will be collected about you through your participation in the survey or interview. Upon completion of the survey, you will be provided with a separate link where you can supply an email address which will be used to contact you if you would like to participate in an interview. Contact information will be collected separately from your survey responses. We will not ask you to state your name or other identifiable information during the optional interview.

Data Storage
All survey in interview data will be stored in a secure, password-protected hard drive. This information will be available only to the lead researchers and will be destroyed upon completion of data collection. All collected data will be destroyed within two years after the completion of the study.

Data Access
The researchers named on the first page of this form will have access to your survey and interview data. Any information derived from this research project that personally identifies you will not be released or disclosed. Publications and/or presentations that result from this study will not include identifiable information about you.

Data Retention
The researchers intend to keep the research data for approximately 2 years and then it will be destroyed.

Mandated Reporting
Under California law, the researchers are required to report known or reasonably suspected incidents of abuse or neglect of a child, dependent adult or elder, including, but not limited to, physical, sexual, emotional, and financial abuse or neglect. If any researcher has or is given such information in the course of conducting this study, she may be required to report it to the authorities.

VOLUNTARY PARTICIPATION STATEMENT
You should not endorse this form unless you have read it and been given a copy of it to
download (Consent Form Available Here). Participation in this study is voluntary. You may refuse to answer any question or
discontinue your involvement at any time without penalty or loss of benefits to which you might
otherwise be entitled. Your decision will not affect your relationship with California State
University, Northridge. Your endorsement below indicates that you have read the information in
this consent form and have had a chance to ask any questions that you have about the study.

IF YOU HAVE QUESTIONS
If you have any comments, concerns, or questions regarding the conduct of this research please contact the research team listed on the first page of this form.

If you have concerns or complaints about the research study, research team, or questions about
your rights as a research participant, please contact the Research and Sponsored Programs office,
18111 Nordhoff Street, California State University, Northridge, Northridge, CA 91330-8232, by
phone at (818) 677-2901 or email at irb@csun.edu.

Question Title

* 1. I have read the Participant Information Form and I agree to participate in the study.

 
 12% of survey complete.

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