Survey - Letter of Information

What are we trying to discover? We know that technologies and augmentative and alternative communication (AAC) systems support interaction and communication in diverse settings and can enable participation.  However, there are few standards guiding the development of AAC systems. We are trying to figure out what is important to ensure that these systems can be used by the greatest number of people with ease and efficiency.

Who Can Participate? You are invited to take part in this study if you are:

• someone who uses/needs AAC technology
• someone who works with people who use AAC technology
• someone who supports someone who uses AAC technology (i.e. parent, caregiver, aid, etc.)
• someone who provides people with AAC technology (i.e.: a teacher, occupational therapist, sells medical devices, etc.)

What will happen during the study? 

You will be asked to participate in an online survey. You will have two options for completing the survey. 

Option A: If you are interested in participating in future research with Queen’s University regarding use of the devices with which you are familiar and are willing to provide contact details, your survey responses will be confidentially saved to allow demographic information to be linked – if we are looking for people to participate for which you’d be a good fit.

Option B: If you are not interested in participating in future research with Queen’s University, your survey responses to this survey will be anonymous and unable to be linked to you at all.

You will be asked to participate in an online survey. First, you will be asked some demographics questions to get a better idea of your background. Next, you will be asked a series of 13 questions each with several subsections. 

You will be asked questions about the tools and resources that are used for AAC. These questions will gather information about the recommendations for and use of AAC technology to help us determine who is involved in the decision-making process, what type of AAC systems are used, what sort of training is required, the types of funding available, and the compatibility of systems. Each response will be ranked on a scale from 1-9, 1 being least important and 9 being most important. Open-ended responses are included for each question. The movements of the cursor on the screen while taking the survey will be recorded to enable us to evaluate ease of use when completing the survey. You are welcome and encouraged to use assistive technology (AT) or AAC when communicating with a human assistant to complete the survey if that is your preferred means of communication.

If you would like to participate in future studies, you will be given the option to provide your name and details at the end of the survey. If you choose this option, we will keep your contact and demographic details in a password protected file for future studies.

The time commitment is approximately 45 minutes to one hour depending on how you access the survey. For persons who use AAC systems, it may take slightly longer. If you have any issues regarding accessibility with the use of AT or an AAC device, please contact one of the principal investigators listed above – it is important for us to know of any issues.

Once the survey has closed, you will be given the option to receive a $5 Starbucks gift card for your time. If you would like you can provide email details (and your name will not be linked to any data collected). If you choose not to receive the $5 gift card, a donation of $5 will be given to the Canadian chapter of the International Society for Augmentative and Alternative Communication (ISAAC).

Are there any risks to doing this study? The risks in participating in this study are minimal. However, there are risks. You may experience discomfort due to the sensitive nature of the questions.

Are there any benefits to doing this study? We hope that what is learned as a result of this study will help us to understand better how AAC systems are recommended across Canada and to develop guidelines to make the process of assessment and decision-making easier and more standardized. If you wish to provide your email details, you will receive a Starbucks gift voucher of $5 upon completion of the study.

Who will know what I said or did in the study? Every effort will be made to protect your confidentiality and privacy. We will not use your name or any information that would allow you to be directly identified when the results are published. If you wish to participate in future studies, your email will be linked to demographic information. However, you can complete the study anonymously, no links will be made between your identity and the questions that you have answered.

What if I change my mind about being in the study? Your participation is purely voluntary, and you can withdraw at any time. You can simply exit this survey if you want to stop participation.

Who will have access to the information you share? Only our study team will have access to the information you share. Electronic files will be contained on a password-protected computer.

The study data will be stored on an encrypted hard drive on Queen’s University servers. If you have chosen to provide your name, only the demographic/background information will be linked to your name. The data will be stored securely and separately from the data on a secure server at Queen’s University. The data will be stored securely for at least five years per Queen’s University Policy, after which the de-identified data will be deposited into the Queen's University Institutional Repository. The Queen’s General Research Ethics Board (GREB) may request access to the information you shared to ensure that we, as researchers, are meeting our ethical obligations in conducting this research. GREB is bound by confidentiality and will not disclose any of your personal information or the information gathered.

We plan to publish the results of this study in academic journals, present them at conferences, display them on our webpage, and a full report will be provided to Accessibility Standards Canada. No personally identifying information will be shared or presented.

If you have any questions about the research, please contact Claire Davies, Beata Batorowicz, or Shane Pinder.

This Letter of Information provides you with the details to help you make an informed choice. All your questions should be answered to your satisfaction before you decide whether to participate in this research study.

You have not waived any legal rights by consenting to participate in this study.

CONSENT
By moving to the next screen, you are agreeing to the following:

I have read the information presented in the information letter about a study being conducted by Claire Davies of Queen’s University.

I have had the opportunity to ask questions about my involvement in this study and receive additional details as requested.

I know that I can download a copy of this form from the study website: https://www.queensu.ca/aac-caa/

I agree to participate in the study.

Compensation

On behalf of Accessibility Standards Canada, participants will receive a Starbucks Giftcard of $5 for participation in this phase of the research or those funds will be donated to ISAAC.

How do I find out what was learned in this study? We will have this study completed by March 31, 2023. The results of this study and papers published about this study will be available on the website for the study: https://www.queensu.ca/aac-caa/

Questions about the Study: If you have questions or need more information about the study itself, please contact us as listed above.

This study has been granted clearance according to the recommended principles of Canadian ethics guidelines, and Queen's policies.

If you have any ethical questions or concerns, please feel free to contact the Chair of the General Research Ethics Board at 613-533-2988 and (toll-free) 1-844-535-2988 or Chair.GREB@queensu.ca.

Survey