Consent

Purpose of the Study

Rates of other medical and psychiatric disorders are high among children and adolescents with Autism Spectrum Disorder (ASD). Prescription medication use among youth with ASD is also common, though rates differ depending on a number of risk factors. Unfortunately, side effects for some medications are more likely to occur in children with ASD. While some researchers have examined the medication use in adults with ASD, little is known about the specific health issues and risk factors for medication use among children and adolescents with ASD. Additionally, it is unclear how doctors and parents keep track of medications, and document their effect on the health of their children.
The current study investigates how common prescription medication use is among children and adolescents with ASD. This study will also explore the risk factors for medication use, side effects of medication, medication monitoring among parents and health care providers, and the general experiences of youth with ASD in the health care system.

What Will Participation Involve?

Participation in this study will involve the completion of an online survey. Following the completion of the online survey, participants may also volunteer to participate in a 1 hour phone interview. The phone interview will involve open-ended questions, and will allow families the opportunity to describe their experiences from the online survey in more detail.

Are There any Risks Involved?

There are no foreseeable risks associated with participating in this study. However, some participants may experience discomfort when responding to some research questions. You have the option to not answer any question that you feel uncomfortable responding to and you are free to withdraw from the study at any point in time.

Voluntary Participation

Your participation in the study is completely voluntary and you may choose to stop participating at any time. Your decision not to volunteer will have no impact on the nature of your relationship with York University either now, or in the future.


Confidentiality

All information that is collected will be kept strictly confidential to the fullest extent possible. To ensure confidentiality, data from the survey will be stored on an external hard drive in an encrypted file that will be kept at the Child Learning Projects Lab at York University. The lab is also locked and only accessible by project personnel. Upon completion of the survey you will be assigned a participant number by which all the information you provide will be identified. The information you provide in the survey will not be associated with any personally identifying information.

If you choose to participate in the optional phone interview portion of the study we may choose to audio record the interview in order to allow us to refer back to the recording in the future when analyzing the data. If we decide to record the interview, you will be informed that the interview is being recorded prior to the commencement of the interview, and the recording will only take place with your consent. Any audio recordings we take during the interview portion of the study will be kept in an encrypted file, and hardware containing the recording will be kept in our secure lab at York University. The recording will not be shared with anyone, other than research associates affiliated with this project.

Your data will be stored for an extended period of up to 10 years after the study to enable comparison and combination with data in future studies. Once all projects in this line of research have been completed, all data will be deleted from any hard drives on which they have been stored.

In the event that the results are published or presented, only grouped data will be used to guarantee anonymity. Any individual or personal information will be kept confidential and anonymous.

Questions About the Research?

If you have questions about the research in general or about your role in the study, please feel free to contact Busi Ncube either by telephone at (416) 650 8495 or by email (yorkmedsstudy@gmail.com). This research has been reviewed by the Human Participants in Research Committee, York University’s Ethics Review Board and conforms to the standards of the Canadian Tri-Council Research Ethics guidelines. If you have any questions about this process, or about your rights as a participant in the study, please contact Ms. Alison Collins-Mrakas, Manager, Research Ethics, 309 York Lanes, York University (telephone: 416 736 5914) or email: acollins@yorku.ca).

Question Title

* 1. Please check the box below and enter your initials to indicate your consent in participating in this study.

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