Exploring the Lived Experiences of Racialized Parents Who Have Children or Youth with Disabilities: A Descriptive Case Study

You have been invited to participate in this study if you:

• Self-identify as a racialized person
• Are 18-years or older
• Have a child or children with disabilities that are currently accessing services at Grandview Kids
• Speak English and live within the Durham Region.
• Have access to the internet and an electronic device that can join an online video call to attend virtual interviews.

From the perspective of racialized caregivers of children with disabilities, how does race impact the access of services in a community-based pediatric rehabilitation setting?

Research shows that some groups of people have a harder time getting care for their children than others. For example, people from different racial groups may experience more unfair treatment or have less access to healthcare in Canada. We are still learning about these experiences in pediatric rehabilitation. We would like to learn more about the experiences of racialized families that have children or youth with disabilities. This will help us to understand what this experience looks like for clients of Grandview Kids and help to inform and improve Grandview programs and services.

We will ask you to join a series of 3 private online interviews using Google Meet. You’ll have the opportunity to respond to questions asked by the researcher. The process will involve three interviews, each scheduled approximately one or two weeks apart. You will receive an email from the primary researcher (Alissa) with a meeting link and instructions on how to join the meeting. The first interview will ask questions about your experience as a caregiver of a child or children with a disability. The second interview will ask questions about your service journey experience at Grandview. The third interview will ask about your experiences as a racialized caregiver accessing and receiving services at Grandview. Sessions will be video recorded to be transcribed for analysis purposes. You are not required to have your camera on during the meeting and may view the recording if desired until the point where it is deleted. All interviews will be one-on-one with the researcher.

In addition, we will also ask you to complete an optional demographic form. It will ask about your age, role, services you are accessing for your child, religion, race, employment status, and income level. These questions help us to gather background information to better understand the study results. 

Each interview will last about 45 – 60 minutes. There are 3 separate interviews.  

We hope to recruit 3 parents.

No. These interviews have no connection to your child’s health record. Your name or your child’s name will not be attributed to any information that is discussed. Your answers will not impact the care and services your child receives at Grandview Kids.

You may feel uncomfortable or bored answering interview questions. You can skip any questions you do not want to answer at any time. There are no known physical risks to you participating in this study. When answering questions about racism, discrimination, or discussing your child’s diagnosis/service journey you may feel upset or overwhelmed. If this happens, you have the right to skip those questions and we will provide you with resources for mental health support services.

All information collected about you will be “de-identified” by replacing your identifiable information (i.e., name) with general information and a pseudonym (false name). For example, if specific details about the Grandview clinic are mentioned (e.g., location or the name of a clinician) , your child’s name, or any information that can be directly connected to your identity is stated, it will be removed or changed in the transcript to protect your identity. Due to the information that is being collected there is a small chance of re-identification. All efforts will be made to conceal your identity, but complete anonymity cannot be guaranteed.

You may not directly benefit from this study. Your answers may help Grandview Kids improve its programs and services.

The data collected in this study that is used for current and potentially future research and will be secured safely. All identifying information (e.g., name, name of child) will be given a pseudonym (false name). All names of clinicians or staff members from Grandview will be generalized to state “staff”. If a specific location where services are received is stated it will be removed. If in the conversation other personal details such as your employment or specific locations or places such as a community or worship center is mentioned, it will be removed from the transcript. If specific dates are mentioned, they will be generalized. For example, if you mention your child accessed services in 2020, we will generalize that date to state that services were accessed in the years 2020-2024. We will remove any information that can be traced back to you to protect your identity as much as possible.

All data will be password protected and stored on the Motor Behaviour and Physical Activity lab’s Google Drive folder owned by Ontario Tech University. Overall results may be published for scientific purposes, but your identity will remain confidential. This research study includes the collection of demographic data which will be aggregated (not individually presented) in an effort to protect your anonymity. Grandview staff will not have access to any of the raw identifying data.

Despite best efforts it is possible that your identity can be determined even when data is “de-identified”. Your privacy will be 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 is in transit over the Internet. Please note that communication via e-mail is not absolutely secure. Thus, please do not communicate personal sensitive information via e-mail. Limits of this confidentiality include situations of suspected child abuse, concerns of harm to self or others, or any request for information by court order.

Yes. Participants in this study will receive incentives for their time. Each participant will receive a $50.00 gift voucher for their participation in each interview in the study for a total of $150. As a participant if you choose to withdraw from the study, you will not suffer any disadvantage. No payment to the participant due prior to the point of withdrawal will be withheld.

Your participation in this study is voluntary. You can choose to participate in the parts of the study in which you feel most comfortable with. 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, and it won’t affect any services you receive from Grandview Kids. You will be given all the information that is relevant to your decision to continue or withdraw from participation.

You can leave the study at any time without any penalty. If you choose to withdraw, any data that has been collected will be destroyed and will not be used in any analyses, publications, or further research. If you wish to withdraw from the study, you can do so by contacting one of the investigators by telephone or email (see contact information above). Please note that once the study is published, you will not be able to withdraw your data.

Personal information will be kept safe in a password protected secure Motor Behaviour and Physical Activity Lab Google Drive folder belonging to Ontario Tech University. Data collected digitally, such as information from the demographic information form will be saved directly to the Motor Behaviour and Physical Activity Lab Google Drive Folder. All videos will be securely stored in the Motor Behaviour and Physical Activity Lab Google Drive Folder as well. No files will have the participants data and names both attached. All participants will be given a numeric code and the master list will be saved separately within the Google Drive Folder with only Meghann Lloyd and Alissa Latiff having access.

Alissa Latiff under the supervision of Meghann Lloyd will be responsible for the data collected from this study. Other research team members may have access to the password protected Google Drive folder for this specific research project or any potential secondary research that is related to this study. This can include graduate students or research assistants who have signed confidentiality agreements. Data will be anonymized, and demographic form data will be aggregated (not individually presented) to protect the privacy of your data throughout the research process, including after publication. All information collected during this study, including your personal information, will be kept confidential. It will not be shared with anyone outside the study unless required by law. Your name will not be used in any reports, publications, or presentations related to this study. Once the transcripts are created and are sent back to you to confirm they are accurate, the recordings will be deleted from the Google Drive folder.

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.

You can choose 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.

We are happy to answer your questions. If you have any questions about your rights, or concerns, please contact the Joint Research Ethics Board office at (905) 430-4055 x6004, or at researchethics@ontarioshores.ca. This office is not a part of the study team. They are responsible for the ethical conduct of research studies at Ontario Shores, Abilities Centre, and Grandview Kids. If you have any questions about the study, please contact Dr. Meghann Lloyd at 905-721-8668 ext. 5308 (office) ext. 5988 (lab).