Preferences of people with post-stroke aphasia for aphasia research videos: An international project

Figures & data

Table 1. Participant demographic and aphasia severity information

Variable	Stage 1	Stage 2	Stage 3
Overall number	16	40	6
Gender Female Male	6 10	20 20	3 3
Age 40 – 65 years > 65 years Number of people who answered this question	13 3 16	36 0 36	4 2 6
Country of residence United States of America Australia Canada United Kingdom Ireland Number of people who answered this question	14 1 1 0 0 16	15 0 1 18 3 37	1 0 5 0 0 6
Main language spoken English Number of people who answered this question	16 16	29 36	6 6
Aphasia duration < 1 year 1-5 years 6-10 years > 10 years Number of people who answered this question	2 7 4 3 16	0 12 16 7 35	0 2 3 1 6
Aphasia severity# 0 No usable speech or auditory comprehension 1 Communication through fragmentary communication 2 Conversation about familiar topics is possible with help 3 Conversation about familiar topics is possible with (almost) no help 4 Obvious loss of fluency 5 Minimal discernible speech handicap Number of people who provided sufficient verbal communication to be rated	0 2 5 3 3 0 13	0 6 4 5 8 4 27	0 0 1 4 1 0 6

Note. #Aphasia severity was rated using the ‘Aphasia Severity Rating Scale’ (ASRS from the Diagnostic Aphasia Examination, BDAE; Goodglass et al., 2000)

Table 2. Questions and participant responses during the three focus group stages

Stage 1 Preferred questions by PWA (at least 75 percent agreed on importance) with response options in parentheses and percentage vote for topic guide inclusion italicised	Stage 2 Responses		Stage 3 responses Did you like this video feature?	Additional qualitative comments
	Most frequent response (in percentage)	Second most frequent response (in percentage)
1. What talking speed is good? (Slow, Normal Conversation, Fast. Note participants in Stage 2 requested an additional “it depends” response option to better reflect their views) 93.6% (n = 15/16) voted Yes	Normal 42.5% (n = 17/40)	Depends 30.0% (n = 12/40)	Yes 100% (n = 6/6)	Umm clinicians and what have you think that ah people with aphasia have lost some of their intelligence so they talk slow as if someone is a bit erh on the stupid side for want of a better way of putting it. That’s not true at all it’s just that people are a bit slow to get stuff out err and assimilating stuff or whatever so erm um the speed for conversation if it’s too fast it goes past you like a fast car but erh umm normal conversation is ok in some circumstances and if someone is speaking slow then because erm they’ve complicated things to say to you that’s ok but if it’s just because they think you can’t pick it up fast enough that’s wrong [P13]
2. How long should the videos be? (2-3 minutes, 5 minutes, 10 minutes, 10-15 minutes. Note participants in Stage 2 requested an additional “it depends” response option to better reflect their views) 87.5% (n =14/16) voted Yes	Depends 40.5% (n = 15/37)	5 min 21.6%, 10 min 21.6% (n = 8/37 for both response options)	Yes 100% (n = 6/6)	It depends on what the video is for and what vocabulary and how difficult it is [P12]
3. Do you like a photo of the person at the start? (Yes, No, Don’t know) 100% (n = 16/16) voted Yes	Yes 75.0% (n = 27/36)	Don’t know/Unsure 25.0% (n = 9/36)	Yes 100% (n = 6/6)	It makes it more personal and more interesting [P13]
4. Do you like keywords? (Yes, No, Don’t know) 81.3% (n = 13/16) voted Yes	Yes 86.5% (n = 32/37)	No 8.1% (n = 3/37)	Yes 100%	I agree I think it [keywords] makes it universal [P4]
5. What images are the easiest to understand? (Photographs, Illustrations, Symbols. Note participants in Stage 2 requested an additional “a mixture of images” response option to better reflect their views) 87.5% (n = 14/16) voted Yes	Mix 79.5% (n = 31/39)	Photos 10.3% (n = 4/39)	Yes 50% (n = 3/6) Don’t know/Unsure 50%	Usually usually I-I used to be proposal manager and I if you go in front of good photographs or good illustrations that’s good [P6]
6. Should someone with aphasia be part of the video? (Yes, No, Don’t know) 87.5% (n = 14/16) voted Yes	Yes 67.6% (n = 23/34)	Don’t know/Unsure 32.4% (n = 11/34)	Yes 100% (n = 6/6)	Ah man [Researcher] and umm woman [PWA] … . Same ok … equal equal you know … . And umm learning … and aphasia … and talking ah ah name ah … [Researcher name]? Yeah [Researcher name] … talking … beautiful … [P43]
7. Should people with aphasia decide the topic? (Yes, No, Don’t know/Unsure. Note participants in Stage 2 requested an additional “combination between PWA and a researchers” response option to better reflect their views) 50.0% (n = 8/16) voted Yes (remaining 50.0% were Unsure)	Don’t know/Unsure 54.5% (n = 18/33)	Combination 18.2% (n = 6/33)	[Not asked as the questions related to participants’ perceptions of the example video]	I think it depends. It should be some people with aphasia yes they should absolutely make topics that we agree on but they there’s so much study out there that’s new that we don’t know about and we need to know about it. So we need to … again it depends [P18]
8. Should videos have background music? (Yes, No, Don’t know/Unsure) [Added during focus group]	No 78.8% (n = 26/33)	Don’t know/Unsure 15.2% (n = 5/33)	Yes 100% (n = 6/6) [Note this referred to participants’ like that the video had no background music]	Can you imagine listening to her and then … where the music is as well. Too … nope I think it’s too much [P42]
9. Summary at the end so you can take a photo? (Yes, No, Don’t know/Unsure) [Added during focus group]	Yes 97.0% (n = 32/33)	Don’t know/Unsure 3.0% (n = 1/33)	Yes 100% (n = 6/6)	Yes yes … . Again ah ok [gestures looking back and forth with finger] … . Summary … . Ah ok … picture and share [P43]
10. Should videos be in different languages? (Yes, No, Don’t know/Unsure) [Added during focus group]	Yes 86.2% (n = 25/29)	No 10.3% (n = 3/29)	[Not asked as the questions related to participants’ perceptions of the example video]	[No additional comments provided]
11. Should videos include a list of resources? (Yes, No, Don’t know/Unsure) [Added during focus group]	Yes 92.0% (n = 23/25)	No 4.0%, Don’t know/Unsure 4.0% (n = 1/25 for both response options)	Yes 100% (n = 6/6)	I’m saying yes but then another time depending on what it is [video topic] I might be like hmm [shrug] it doesn’t matter [P30]

Figure 1. Preferences of people with aphasia about the features of aphasia research videos.

Goodglass, H., Kaplan, E., & Baressi, B. (2000). The Assessment of Aphasia and Related Disorders (3rd ed.). Lippincott, Williams, & Wilkins.

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