Table 1 Responses to multiple choice questions
Question | Number of respondents | n (%) |
|---|---|---|
What do stroke survivors value about being a member of the Register? | ||
Are you a member of the Stroke research Register | 406 | |
Yes | 154 (38) | |
No | 168 (41) | |
I care for someone who had a stroke or TIA | 55 (14) | |
Other | 29 (7) | |
Why did you join the research register | 138 | |
I want to test new treatments that might help me | 74 (54) | |
I want to be informed about stroke research | 100 (72) | |
Family member recommended it | 6 (4) | |
Doctor/researcher/health professional recommended it | 23 (17) | |
Not sure | 3 (2) | |
Other | 14 (10) | |
What do you like about being a member of the Stroke Research Register? | 137 | |
Being asked to take part in research | 92 (67) | |
Keeping up to date with research | 104 (76) | |
Feeling part of a community of people with stroke or TIA | 72 (53) | |
Hearing about community talks or events relevant to me | 62 (45) | |
Other | 2 (1) | |
How would you rate your experience of being involved in the Stroke Research Register? | 114 | |
Excellent | 61 (54) | |
OK | 38 (33) | |
Not sure | 12 (11) | |
Bad | 1 (1) | |
I am not a member | 1 (1) | |
What are stroke survivors’ top reasons for taking part (or not taking part) in research studies? | ||
Have you been invited to take part in any research studies about stroke? (number yes, %) | 377 | 199 (53) |
If yes, how many have you been invited to? | ||
not sure | 44 (12) | |
0 | 119 (32) | |
1 to 3 | 149 (40) | |
4 to 5 | 13 (3) | |
> 5 | 12 (3) | |
How many studies have you participated in? | ||
0 | 184 (49) | |
1 to 3 | 136 (36) | |
4 to 5 | 9 (2) | |
> 5 | 9 (2) | |
Which things would help when deciding to take part in a study? | 294 | |
The study might help me | 197 (67) | |
The study might help others in the future | 256 (87) | |
A person with stroke or TIA tells me what it was like in the study | 44 (15) | |
Help with transport | 51 (17) | |
Simple info about the study (plain language summary) | 113 (38) | |
Detailed scientific info about the study | 75 (26) | |
If you have decided not to take part in a study, why not? | 214 | |
I was too busy | 40 (19) | |
The study was asking too much of me | 21 (10) | |
The information was too complicated | 14 (7) | |
Transport was too difficult | 43 (20) | |
I wanted to, but a researcher told me I wasn’t eligible | 40 (19) | |
The study wasn’t relevant to me | 46 (21) | |
Other | 79 (28) | |
What are stroke survivors’ preferred communication methods with researchers? | ||
How did you find out about the study/studies? | 107 | |
Letter or email from the Stroke Register team | 44 (41) | |
Phone call from the Stroke Register team | 18 (17) | |
Doctor / health professional | 17 (16) | |
Radio / newspaper | 6 (6) | |
Family / friend told me | 14 (13) | |
Social media | 29 (27) | |
Not sure | 2 (2) | |
Other | 12 (11) | |
How would you like to be invited to research studies? | 303 | |
Letter or email from the Stroke Register team | 272 (90) | |
Phone call from the Stroke Register team | 89 (29) | |
Doctor / health professional | 53 (17) | |
Radio / newspaper | 12 (4) | |
Family / friend told me | 47 (16) | |
Social media | 76 (25) | |
Not sure | 8 (3) | |
Other | 7 (2) | |
How do you, or would you like to get stroke research information from our researchers? | 297 | |
Regular newsletters (email or post) | 274 (92) | |
Public talks / lectures about research | 88 (30) | |
Community events with informal time to talk to a researcher | 104 (35) | |
Other | 14 (5) | |
Would you like to be more involved in: | 286 | |
Deciding which issues are the most important to research (number yes, %) | 208 (73) | |
Working with researchers to design better studies (number yes, %) | 187 (65) | |