Research Family Engagement Survey for Families - Summer 2017

Research Family Engagement Survey for Scientists - 2017

Question Title

* 1. Are you....? (please check all that apply)

Parent / Guardian of an individual with a disability

Family member (grandparent, sibling, other) of an individual with a disability

Client/former client under the age of 18

Client/former client over the age of 18

Family Leader in the Family Leadership Program

Completing this survey in partnership with my child (under the age of 18)

Completing this survey in partnership with my child (over the age of 18)

Question Title

* 2. Have you been involved in research at Holland Bloorview’s research institute?

Yes

Question Title

* 3. If yes to previous question, in what way?
Check all that apply

Being a study participant

Advising or sharing your ideas with research staff on projects

Reviewing research grant proposals

Presenting with staff at Holland Bloorview or external conferences

Helping communicate research findings using plain language

Suggesting possible research ideas or questions

Attending special information events

Sitting on research committee(s)

Other (please specify)

Question Title

* 4. If no to question #2, please tell us why?
Check all that apply

Time barrier/conflict

Language barrier

Scientific information can be confusing

Unable to travel regularly to Holland Bloorview

Was not aware of research opportunities

Not interested in participating in research

Other (please specify)

Question Title

* 5. Do you know that current and past research information, as well as scientist and their lab profiles, are available online?

Yes

Question Title

* 6. If yes, please tell us how often you visit any of these webpages. (Select one)

Daily

Often (multiple times a month)

Sometimes (once or twice a month)

Rarely (one or twice a year)

Never

Question Title

* 7. Do you know that you can subscribe to receive email alerts when Holland Bloorview posts a new research study online that you can consider participating in, with your child?

Yes

Question Title

* 8. Would you be interested in helping Holland Bloorview’s research institute determine areas of interest for future research? (Select one)

Very interested

Interested

Neither interested or disinterested

Disinterested

Question Title

* 9. If not interested, please tell us why?

Question Title

* 10. What are good ways to build strong working relationships between scientists and families that will support meaningful research? (Select top two)

Families and scientists collaborating on areas of research that are relevant/of interest to families

Families sharing their lived experience stories with research staff, scientists, trainees

Scientists sharing research ideas with families to determine areas of interest for future research

If none of these descriptions apply, what does meaningful research mean to you?

Please explain:

Question Title

* 11. Would you like to be informed about Holland Bloorview research results?

Yes

Question Title

* 12. If yes, please tell us how you would like to be informed. (Check all that apply)

Social media / website

BLOOM stories (http://bloom-parentingkidswithdisabilities.blogspot.ca/)

Written summaries / Infographics

Symposiums, conferences, Parent Talks or Parent workshops

Other (please specify)

Question Title

* 13. Is there anything else that we did not ask in this survey, that you think would be important for us to consider about engaging families in research at Holland Bloorview?

100% of survey complete.

Question Title

* 1. Are you....? (please check all that apply)

Question Title

* 2. Have you been involved in research at Holland Bloorview’s research institute?

Question Title

* 3. If yes to previous question, in what way? Check all that apply

Question Title

* 4. If no to question #2, please tell us why?Check all that apply

Question Title

* 5. Do you know that current and past research information, as well as scientist and their lab profiles, are available online?

Question Title

* 6. If yes, please tell us how often you visit any of these webpages. (Select one)

Question Title

* 7. Do you know that you can subscribe to receive email alerts when Holland Bloorview posts a new research study online that you can consider participating in, with your child?

Question Title

* 8. Would you be interested in helping Holland Bloorview’s research institute determine areas of interest for future research? (Select one)

Question Title

* 9. If not interested, please tell us why?

Question Title

* 10. What are good ways to build strong working relationships between scientists and families that will support meaningful research? (Select top two)

Question Title

* 11. Would you like to be informed about Holland Bloorview research results?

Question Title

* 12. If yes, please tell us how you would like to be informed. (Check all that apply)

Question Title

* 13. Is there anything else that we did not ask in this survey, that you think would be important for us to consider about engaging families in research at Holland Bloorview?

* 3. If yes to previous question, in what way?
Check all that apply

* 4. If no to question #2, please tell us why?
Check all that apply