Participating in Research

Clients and families who agree to take part in research projects are very important to the work being done at TVCC. Key research/clinical questions cannot be answered without clients and families sharing their experiences and ideas, and giving their valuable time. As a parent/caregiver, or client of TVCC, you may one day receive a phone call or letter from a TVCC staff member asking if you or your child would like to be involved in a research project.

If you agree to participate in a study, the following steps are generally followed:

1. You will receive a letter explaining the research project, and a consent form to be signed and returned to the researcher if you agree to take part in the project.
2. If you have any questions, you can contact the researcher or the TVCC Research Contact Person whose names are on the letter.
3. When the researcher has received your signed consent, she/he will contact you to arrange a time to collect information (if applicable).
4. You participate in the study.
5. When all of the information has been collected, it is put together, and examined (which takes some time).
6. The results will then be shared with you, TVCC staff members, and other relevant healthcare professionals.

Participation in any study is totally voluntary. You may decide not be involved and may refuse to answer any questions at any time. Your decision not to participate in a research project will not affect the services you or your child receives from TVCC.

Questions to Ask a Researcher

To make a decision about whether you will take part in a research project, you need to know:

• Who is conducting the research and why?
• What information are they looking for?
• How will this information be helpful?
• How and why were you chosen?
• What do you or your child need to do?
• How much time it will take?
• What will be done with the information?
• How will the information be kept confidential?
• How and when will you hear about the results of the study?

Research is an Opportunity, Not an Obligation

Many families and clients regularly participate in research studies and enjoy the experience very much. Research is considered a regular and important activity for staff members, families, and clients at TVCC.

Families volunteer to do research but are never obligated to be involved. The care that a child and/or family receives is not dependent on involvement in research projects. Sometimes families need a break from research or there are too many activities occurring within a family. When families do not wish to participate in projects, they are free to say no, or to not give consent.

If you do not wish to be involved in any research projects, you can call TVCC’s Research Officer at 519-685-8680. Your child’s file will be flagged as a family who does not wish to be involved in research at this time. TVCC Research Contacts will then know not to call you about being involved in any upcoming projects. However, you can also request that TVCC check with you at a later date to see if you now want to be involved in research. Your wish not to be involved in research will not in any way affect the care or services that you receive.