Table 5 Theme 4 results on Impact with subthemes, categories, and examples

Impact

The impact of their involvement and who it benefits research

Subthemes

Categories

Participant testimonies

Contribution to dissemination (3)

Promote real life priorities (3)

Spread the word via support organizations (3)

[M.M] “Involved, that can bring something to the people with aphasia. It [short pause] making it easier for them to communicate. Then yeah, sort of I'd like to be involved [short pause] so that I can help them with whatever the problem is a bit communicate, a bit the family, a bit at the workplace, whatever it maybe hopes to contribute a little bit to”

[L.L] “Yeah yeah. Communications. But I would like to say it’s difficult for me and us in France. If you don’t speak English [short pause]” […] “I can send to my French aphasia group [long pause] to tell them”

[J.J] if you invite me in conference or in workshop, I can either European one or French one, to explain the study”

Influence and empowering stroke community (4)

Improve QOL of people with stroke and aphasia (3)

Living with stroke and aphasia (3)

[J.J] Improve the life of those living with the aphasia…that's the most important thing.. the outcome is so important for the people who have strokes and so on”

[I.I] “I feel… I'm happy to do anything that can help people to understand the difficulties that persons with strokes or aphasia have, it's very important that other persons understand the difficulties and understand a little bit more about aphasia, so that people would noy want to be so isolated”

Raise awareness (2)

Lack of education (2)

[I.I] “Even health care professionals don't understand” […] “That [short pause] worries me very much is how much [short pause] lack of information professional health have [short pause] because I was I was Intensive Care Nurse. I was in the top I should know everything, and I didn’t [long pause]”

Improve outcome and impact (5)

Differentiate Outcome (4)

Generate real life results (4)

[V.V] “I think aphasia is one of the hardest difficulties that people can have. And it's also one of the difficulties that isolate more the stroke survivors, especially the young ones. And, and I've been trying to call attention in the hospital about that, because…they are quiet, and they stay at home. And I think is one of the hardest sequels that persons can have. Because then they cannot express. So, it's really hard. So, it's… I'm very happy if we are doing something in that area”

[J.J] “Real results from life… Yeah, that's, that's for sure… that's for sure. And I really hope that people are going to read it afterwards. Understand and change things…”

[A.A] “Results will be different…people will ask the questions, so real outcomes. Will have more real outcomes”

[C.C] “My part [short pause] it will have more experiences and more quality than…Yes research will have different and real result [short pause] better quality after”

Review researcher participant relationship (1)

Passive subject (1)

[C.C] “So I remember… because I was doing my myself for another research. I knew very little [short pause] and I have to give my consent that of course my data could be used for research material and just [long pause] I felt that I was [long pause] I was in an object in a study if you wish, so I didn’t feel that I was the agent in that [short pause]. I mean it was fine with me but, this is how I conceived the relationship between researcher and the patient. The patient is somehow by definition passive, I guess”