Summary of belief statements and sample quotes from patients assigned to domains identified as relevant
| Domain | Specific belief | Frequency (out of 13) (n (%)) | Sample quote |
| Goals | I would like to see my own health/function improve. | 13 (100) | ‘Well I’m still not walking yet. I would like to be more mobile…’ (P3). ’Well for me because I want to recover like not quicker but I want recover… I just started my life, I want to go back to work and do all these things’ (P13). |
| This trial would be one of my top priorities. | 8 (62) | (If you were participating in a clinical trial, how often might something else be more urgent than attending a follow-up appointment?) ‘I organize my life pretty well so I don’t think you would- if I had an appointment I would be there’ (P10). | |
| This trial would be one of my top priorities, but other urgent matters could affect my participation. | 5 (38) | ‘Again, something like a death. Other than that, this should be a major concern to the individual to honour your commitment’ (P4). ‘… Well the only other thing is that I’ve got doctors to see but I suppose that’s the only thing’ (P9). | |
| Trial appointments would be important to me, but something else would be more of a priority. | 1 (8) | (If you were participating in a clinical trial, how often might something else be more urgent than attending a follow-up appointment?) ‘My appointments would all be important to me’. (Would there be anything else that is more urgent than the appointment?) ‘Yeah it would depend on what’s going on with my son at school. My son comes first in my life’ (P2). | |
| Knowledge | I have no/limited knowledge of MSCs. | 12 (92) | (Have you heard of MSCs before?) ‘No I haven’t’ (P2). ‘Not that much I guess…’ (P11). |
| I am aware of/ have some knowledge about MSCs. | 1 (8) | ‘I know about stem cells, I read about them. What stem cells do in different cases and so on’ (P8). | |
| I would require/like more information. | 11 (85) | ‘… I would have to understand how long is it, what does it involve, what are- what’s the advice of my physiatrist…’ (P10). ‘I guess what the risks and potential benefits could be. Any alternative forms of treatment, like potential treatments to- as well to make an informed decision’ (P11). | |
| I would not require more information. | 1 (8) | ‘Nope, nope. I’m an old (gender), what do I need to know. Just go for it’ (P8). | |
| I have some knowledge regarding clinical trials. | 10 (77) | ‘I know that it’s, I guess it’s like before a drug or a method or treatment is launched to the public, I guess they’re clinical trials that happen to check and make sure they work and get data on how it works’ (P11). | |
| I have no/limited knowledge of clinical trials. | 4 (31) | (So what do you know about clinical trials?) ‘Nothing’ (P7); ‘Not very much’ (P9). | |
| Social Influences | The opinions of an expert (eg, doctor or scientist) will have an impact on my decision to participate. | 12 (92) | ‘I suppose [scientists and researchers from the study would influence my decision]’ (P9). ‘I would like to get that information from a physiatrist who specialises in stroke recovery’ (P10). |
| My family’s opinions could impact my decision. | 9 (69) | (Who do you think would influence your decision the most (to participate in this trial)?] ‘My family’ (P6). | |
| I would want to receive information from someone not involved in the trial. | 1 (8) | ‘… a physiatrist which specializes in stroke recovery… not really opinionated on it- I would just have it from a person independent rather than a person who is a tie to this…’ (P10). | |
| Others’ opinions do not have a large influence on my decision. | 1 (8) | (Whose opinion is important to you when considering whether to participate in a stem cell trial for chronic stroke?) ‘Mostly mine’ (P12). | |
| Intention | Being placed in the placebo vs treatment group would not affect my decision to participate in a negative way. | 12 (92) | ‘Well I don’t think it would affect me at all. I think I would still want to try something’ (P2). ‘Well to me, I’m already in the non-treatment group. So, the only thing that would be different is that I could be in the treatment group’ (P5). |
| Being placed in the placebo vs treatment group may affect my decision to participate. | 1 (8) | ‘… Like if I had to go to a particular- if it was over 2 months and I had to go to a particular place at a particular time everyday then, I would think “oh boy, that might not be worth it” unless I was getting some experimental treatment that I was confident in. So it would affect it somewhat …’ (P10). | |
| I would consider participating in the trial if it were available. | 8 (62) | ‘…if there was any chance of stem cell research helping correct what problems I have because of the stroke then of course count me in for it…’ (P8). | |
| I would not participate in the trial if it were available. | 2 (15) | ’No, I wouldn’t participate no’ (P7). | |
| I am unsure if I would participate in a trial if it were available. | 1 (8) | ’Oh I don’t know that I would’ (P10). | |
| I would not be less motivated to participate in the trial if it only assessed safety and not efficacy. | 6 (46) | (You’d be okay with testing the safety of the stem cells?) ‘Yes, absolutely. You have to start somewhere’ (P8). | |
| I would be less motivated to participate in a safety trial. | 5 (38) | ’I would be not very motivated if it was just to check the safety of it. Because it’s saying, wow the- that you’re really a guinea pig on your mortality’ (P10). | |
| The method of MSC administration would affect my decision to participate. | 6 (46) | (Would it influence your motivation if the cells were injected into your brain or applied through an IV?) ‘I think it would, like IV- I would yeah… injecting into your brain, I would be scared…’ (P13). | |
| The method of MSC administration would not affect my decision to participate. | 5 (38) | ‘I don’t think it would change me at all. It would probably work or it doesn’t and if the only way it’s going to work is through the brain then so be it…’ (P4). | |
| My emotions would affect my decision to participate in the trial in a negative way. | 4 (31) | (How would these emotions then influence whether you wish to participate in the stem cell trial? Would it make you want to participate more or less?) ‘Less, yeah, more worried and nervous and stuff like that. Yeah less’ (P13). | |
| My emotions would not affect my decision to participate in the trial. | 2 (15) | (How would the emotions you mentioned to me influence whether you wish to participate in the stem cell trial? Would it … make you want to participate more or less?) ‘Participate the same, it’s still- I could do it, it wouldn’t be any less at all’ (P12). | |
| Optimism | I would hope for/expect good things or more good things than bad things. | 12 (92) | ‘Well because I don’t think that researchers or scientists would be embarking on something that the probability is bad rather than good, so I would have confidence that there’s a bigger possibility of it doing good than harm’ (P10). |
| Social/ Professional Role and Identity | I do not see any moral or ethical issues with MSC treatment. | 10 (77) | ‘No, I don’t have any moral or ethical issues. If it helps humanity, it’s a good thing’ (P8). |
| I do see moral and ethical issues with receiving MSC treatment. | 1 (8) | (Do you see any moral or ethical issues?) ‘Yes, that’s a good question. I would have a hard time living with this decision’ (P3). | |
| Environmental Context and Resources | Transportation/parking is a factor in my decision to participate. | 8 (62) | ‘Yeah I mean, parking and/or transportation would be nice. It would be encouraging I guess’ (P11). |
| Transportation is not a factor in my decision to participate. | 1 (8) | (What resources would you need?… Anything else?) ‘No. I have my own vehicle so’ (P2). | |
| Logistical factors (eg, location and time) would influence my decision. | 7 (54) | ‘Well, I live in [location] so we’re talking (X) hours length of time one way. I’m still not mobile. I’m in a wheelchair. I’m unable to walk yet’ (P3). | |
| I feel like I can rely on the healthcare system to support me if things get tough. | 6 (46) | ‘Yes, I can rely on the health care’ (P9). ‘Well I would hope so. I have much experience with it’ (P3). | |
| I have doubts on whether I can rely on the healthcare system if things get tough. | 5 (38) | ‘Right now, I don’t have a whole lot of faith in the healthcare system’ (P4). | |
| I feel like I can somewhat rely on the healthcare system to support me if things get tough. | 1 (8) | ‘I could rely on it but also kind of slow’ (P13). | |
| Financial reimbursement, coverage or an incentive would be helpful. | 4 (31) | ‘As long as it’s covered by healthcare. [Also depends] If- parking is expensive at the hospital’ (P12). | |
| Making sure my dependent family members are taken care of is a factor in my decision to participate. | 2 (15) | ‘(Do you need caregivers for your parents?) Oh yeah, yeah so maybe- well- yeah- they’ll always be with me so yeah’ (P13). | |
| I have sufficient resources to participate in an MSC trial. | 1 (8) | ’I don’t need any resources’ (P8). | |
| Beliefs about Consequences | I am concerned about the potential risks/harm. | 8 (62) | ‘… Maybe it would increase the probability of death or side effects that might- that there are no[ne] now. As soon as you got a trial there’s a little bit of risk, if there wasn’t any risk they would just put it on the market right away’ (P10). |
| I do not perceive any negative consequences to participating in a trial of MSCs. | 5 (38) | ‘It can’t get any worse so I don’t see any’ (P5). ‘I don’t see any negative. I am an optimist so I don’t really see anything negative’ (P8). | |
| This trial has the potential to benefit me. | 5 (38) | ‘Well the advantage that I would see is that if I have significant residual effect that is chronic stroke … and stem cell therapy is going to be a worthwhile therapy then to get in at it- at the leading edge would be some advantage…’ (P10). | |
| This trial will not benefit me. | 2 (15) | (What are some potential negative aspects that you see of participating in this clinical trial?) ‘One is going to the trial and being in the placebo and going through all that, whatever it is and not having any effect and all. All I would be doing is helping science which is cool, but it isn’t something that is going to be therapeutic for me…’ (P10). | |
| This trial will benefit others in the future. | 4 (31) | ‘And second of all, helping to make hopefully a successful treatment available to others in the future based on that clinical trial’ (P11). ‘… if it doesn’t work for me and people weren’t recommended so then that’s a negative for me. But then it’s also a benefit that people will know that this doesn’t work and you’ll try something else’ (P13). | |
| This trial would benefit everyone involved. | 1 (8) | ’Well, this is post-stroke right? Not to prevent stroke? (Yes) Well it would help everyone involved I guess’ (P5). | |
| I am not sure if the trial will have benefits. | 2 (15) | ‘Well, I guess that’s the purpose of the trial. I don’t know. The researchers, they would find that out’ (P5). | |
| Beliefs about Capabilities | I do feel confident in my ability to enrol/participate in a trial of MSCs. | 8 (62) | (How confident are you that you could participate in a trial of stem cells for chronic stroke?) ‘100%’ (P12). ‘Fairly confident’ (P5). |
| Skills | I would use various resources/skills in order to enrol in a trial of MSCs. | 7 (54) | ‘To my knowledge, generally it’d be a publication in the newspaper or perhaps on the website. I can apply that way’ (P4). |
| I would contact my physician in order to enrol in a trial of MSCs. | 6 (46) | (So what steps would you take to enrol and participate in a stem cell trial?) ‘Again, probably through my doctor’ (P12). | |
| I am unsure how to enrol in a trial of MSCs. | 2 (15) | ’I have no idea’ (P7). | |
| Emotion | I feel happy/hopeful about participating in an MSC trial and the potential outcomes. | 6 (46) | ’I would feel happiness. I would be helping out I hope’ (P2). |
| I feel anxious/fearful about participating in an MSC trial. | 6 (46) | ‘I’m not sure [laughs], I’d just be afraid to participate’ (P7). ‘Emotions… anxiety. (Anything else?) Trepidation, uh fear’ (P10). | |
| I would feel a mixture of emotions. | 2 (15) | ‘Well I would say everything, so you name it. (Lists examples) Yeah. (All of the above?) Yeah’ (P3). | |
| I do not think I would feel any emotions, or I am not sure how I would feel about participating in an MSC trial. | 2 (15) | ‘No emotions’ (P7). ‘None of the above. No, it’s an unknown. So I don’t know, I’m up for it that’s all I can tell you’ (P8). |
MSCs, mesenchymal stem cells.