Table 3 Theme 2 results on Involvement with subthemes, categories, and examples

Involvement

The preferred levels and ways of involvement during the research process

Subthemes

Categories

Participant testimonies

Priorities (2)

Quality of life (1)

Walk (2)

Physiotherapy (1)

[A.A] “Life with a stroke is difficult, and with aphasia [long pause] I want better quality in my life [long pause] let people know”

Intensity of involvement (4)

Involvement in all stages (4)

During participant recruitment (3)

Dissemination events (4)

[A.A] “I want In the interviews, groups in research, do questionnaires, things like that..I can also invite C.. can also join the team”

[G.G] “From beginning… until the end

(Participant nods head for confirmation)”

[I.I] “I can tell people from my group to join the team”

[J.J] “I can send to my French aphasia group… your research the, the questionnaires also, the results”

Individualism (4)

Personal experience (3)

Tailor made research (3)

[A.A] “ It will be helpful for the groups, aphasia groups, and to support the aphasia, aphasia group. For example, [short pause] let’s say you have a question, and they (the researchers) will tell their opinion and us our experience [short pause] they will improve the research question” […] Questions will be real, because people with the aphasia will be asking the question, and they know why they are asking”

[J.J] Involved, that can bring something to the people with aphasia. It… ammm… making it easier for them to communicate? The… Yeah, sort of… I'd like to be involved…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”

[I.I] I think in some in some researchers, they do that (the PPI) and that's fantastic. Because it's completely different to understand the things or the person's point of view that knows exactly what they feel and also for the persons that are answering. If they feel understood, they open more. So some studies… some studies in health area do that, but not many. Not many that I know not that I'm aware”

[C.C] “Questions will be real because people with the aphasia will be asking the question [short pause] and they know why they are asking [short pause] and they know that everybody else with aphasia will understand….”

Motivation (4)

Move forward (3)

Joint publication (1)

New challenge (1)

Get in touch with research (3)

Make new connections (4)

[A.A] I have one stroke in my life, and I would like to move forward. But myself…I will move forward…I would like to be more focused in stroke and aphasia research.”[…] “Experience. You will have more experiences. Compared with the ones who are not in these things”

[C.C] “It is important …eem…yeah. I mean it’s… yeah I’m okay… I’m… I think so. It is actually challenging to be in research”

[L.L] […] “And also, I would like to be more in research for stroke and aphasia. I don't know why, but [long pause]” (Participant raises both shoulders up)[…] “Because I was in Erasmus, I have friends all over Europe and I would, I would like to be more in touch with the research. I would like to be part of a European team” […] I would like to [short pause] go to see it and I would like to make connections for the aphasia groups”