Building knowledge and understanding of the intersection of race and disability in accessing pediatric rehabilitation services
Name of Principal Investigator (PI)
There are two people leading this research: Dr. Taryn Eickmeier and Dr. Meghann Lloyd. Taryn and Meghann are the Principal Investigators (PIs).
Taryn is the Executive Lead for Research, Innovation and Knowledge Mobilization at Grandview Kids and Meghann is from the Faculty of Health Sciences at Ontario Tech University.
PIs contact number and emails
Dr. Meghann Lloyd (Ontario Tech University)
Email: meghann.lloyd@ontariotechu.ca
Phone: 905-721-8668 x5308
Name of co-investigators
The research team is made up of:
- Dr. Robert Balogh (Ontario Tech University)
- Dr. Lesley Jacobs (Ontario Tech University)
- Yvonne Mais (The Regional Municipality of Durham)
- Janicka Auguste (Grandview Kids)
- Alissa Latiff (Ontario Tech University) Kaylan Perera (Ontario Tech University)
Introduction
Parents and caregivers of children and youth currently accessing or waiting to access Grandview Kids have been invited to participate in a research study.
The study is called “Building knowledge and understanding of the intersection of race and disability in accessing pediatric rehabilitation services.”
This study has been reviewed by the Ontario Shores – Abilities Centre – Grandview Kids Joint Research Ethics Board (#23-023-D).
More information about the IDEA Study
What is this study about?
We are asking two questions:
- What are the population demographics of clients and caregivers accessing and/or waiting to access Grandview Kids programs and services?
- How do caregivers of clients accessing and/or waiting to access Grandview Kids programs and services rate the inclusivity/sense of belonging, access, quality, wait-time, location, and range of services provided by Grandview Kids?
Why are you doing this study?
The reason we are doing this study is because there is research that shows that some groups experience more barriers when accessing care than other groups. For example, research shows that different racial groups experience more discrimination, or less access, to healthcare in Canada. There is also research that suggests that race and disability intersect, and there are even more barriers.
We are interested in understanding the Grandview Kids community to be able to address barriers, gaps, and to support our team members in delivering culturally-safe care.
What will I be asked to do?
You will receive an invitation from Qualtrics asking you to complete an online survey. You will be given a special code for each child/youth who accesses or is waiting to access Grandview Kids programs and services.
The survey has questions about your child/youth and about yourself. Complete one survey for each of your children/youth waiting/accessing Grandview Kids.
The survey asks questions about your child’s language, communication, developmental needs, race, gender, and access to services. The survey also questions about you as a parent, your sex, gender, race, religion, and opinions about Grandview Kids services. As a census survey, the questions do not ask for you to identify yourself. You will be asked to provide your postal code, so we can understand the communities accessing/waiting to access Grandview Kids services and their unique needs related to culturally-safe care.
How long will it take?
About 15 to 20 minutes for each survey. You are asked to complete one survey per child waiting/accessing Grandview Kids.
How many people are you recruiting?
We hope to recruit as many people as possible, up to 7,800.
Will this study affect how I access Grandview Kids?
No. This is not an intake form. This survey will not be a part of your child’s health record. The results will not link back to your child or your family. Your answers will not impact on the care and services your child receives at Grandview Kids.
What are the risks?
You may feel uncomfortable or bored answering survey questions. You have the option to say “I prefer not to answer” for each survey question. There are no known physical, mental or emotional risks to you or your child for participating in this study. Your participation is voluntary.
What are the benefits?
You may not directly benefit from this study. Your answers may help Grandview Kids improve its programs and services.
How will my informatiom be protected?
All data are stored electronically, on a secured server associated with Ontario Tech University. All files are password-protected on a password-protected computer. Only members of the research team (Dr. Meghann Lloyd, Dr. Robert Balogh, Dr. Lesley Jacobs) will have access to the data.
We do not ask for your name or the name of your child.
The following demographic information will be collected:
- Child sex
- Child gender
- Child race
- Child development
- Child diagnoses
- Child language
- Child preferred means of communication
- Child year of birth
- Child use or waiting of Grandview Kids programs and services
- Parent role
- Parent sex
- Parent gender
- Parent race
- Parent sexual orientation
- Parent disability status
- Parent religion/spiritual beliefs
- Parent education
- Household income
- Parent employment status
- Postal code
This research study includes the collection of demographic data, which will be aggregated (not individually presented) in an effort to protect your anonymity. Despite best efforts, it is possible that your identity can be determined even when data are aggregated. To reduce the risk of your information becoming identifiable, only groups of five or more will be included in our reporting and analysis to Grandview Kids and the public.
We will store the original data and the aggregate databases for 7 years and then destroy it. This is what is required by our Research Ethics Board.
Who will know what I say?
Your privacy is respected. No information about your identity will be shared or published without your permission, unless required by law. Confidentiality will be provided to the fullest extent possible by law, professional practice, and ethical codes of conduct. Please note that confidentiality cannot be guaranteed while data are in transit over the internet.
Your answers will be kept very secure. Only the research team members from Ontario Tech University will have access to it. Your individual answers will not be shown to Grandview Kids staff.
All information collected during this study, including your demographic information, will be kept confidential and will not be shared with anyone outside the study unless required by law. You will not be named in any reports, publications, or presentations that may come from this study.
Do I have to participate?
No. Your participation in this study is voluntary and you may partake in only those aspects of the study in which you feel comfortable. You may also decide not to be in this study, or to be in the study now, and then change your mind later. You may leave the study at any time without affecting services with Grandview Kids. You will be given information that is relevant to your decision to continue or withdraw from participation.
Can I leave the study?
You can withdraw from this study before signing the consent form. To withdraw, please email research@grandviewkids.ca or following the ‘unsubscribe’ prompts from the email invitation. Withdrawing from the study will not impact the programs and services your child/youth accesses or is waiting to access with Grandview Kids.
Once you agree to the study and answer questions on the survey, you cannot withdraw. Your information will be kept anonymous. You have the option to skip any question you do not want to answer or select ‘prefer not to say.’
Will it cost money to participate?
No. There are no costs to you to participate in this study.
How will I find out about the findings of this study?
You have the option to receive a participant summary by email. We will share the findings through the Grandview Kids’ Gather newsletter, on our website and through social media (Facebook, X, Instagram, LinkedIn). Ontario Tech University will share information in presentations at conferences and in published articles in scientific journals. As new ways of sharing findings emerge, we will post on the Grandview Kids website for you to review.
Are there any incentives?
Yes. After completing the survey, you will be offered the opportunity to enter a draw. The draw is for one of 20 $100 Visa gift cards. The draw will take place four times a year. You do not need to enter into the draw.
Who can I talk to if I have questions?
We are happy to answer your questions. Please email us at research@grandviewkids.ca or call 437-529-5364 If you have any questions regarding your rights as a participant or have any concerns about this study, please contact the Joint Research Ethics Board Office at (905) 430-4055 x6004. Everything you discuss will be kept confidential.
How do I participate?
If you are eligible, you will receive an e-mail invitation from Qualtrics with your child/youth’s unique code. Follow the instructions in this e-mail.
If you do not receive e-mails from Grandview Kids, you will receive an invitation in the mail with your child/youth’s unique code. The letter will have QR code. Scan the QR code with your phone or enter the website name into an internet browser on a computer, tablet or smartphone. You will be taken to the Qualtrics platform.
You must review and provide consent before starting the survey.