Illustrative quotations
| Receiving results | |
| Waiting for results | |
| ‘C: I need the results. But if it means I’ve gotta wait, then you sort of have to.’ P2, p5, 165 | |
| Uncertainty and risk | |
| ‘C: I felt worried because there was a lump and worried what it would do when I get older.’ P9, p2, 62 | |
| ‘P: There’s no hundred per cent in anything.’ P5, p5, 151 | |
| Accuracy or speed in reporting? | |
| Accuracy over speed | ‘C: Obviously it’s, quite, like daunting, the wait you have to have. ‘Cos’ you wanna, I sort of wanna know, like ‘Is anything different’?’ P2, p4, 156 |
| Speed over accuracy | ‘P: Even if they, someone gave ya a phone call. (NT: Mmmm.) Just to say, ‘We’ve had a, quick scan. We think everything’s okay, but, we’re not puttin’ our name against it, until ya come in’. It’s just that, not knowing, (NT: Mmmm.) that’s the thing an’ it, an’ it’s awful.’ P10, p13, 488 |
| Preferences to see images | |
| ‘P: We don’t look at the scans any more. We just go in and discuss the changes.’ P2, p2, 54 ‘P: I always want to see them, obviously.’ P7, p2, 50 ‘P: Couldn’t care less, whether we had a picture or not.’ P10, p11, 377 ‘C: Now when I go, I prefer seeing the scans.’ P12, p2, 53 | |
| Emotional responses to first seeing MRIs | |
| Positive | ‘P: You were giggling (when first shown MRI)? (NT laughs. C: Yeah.) (…) C: ‘Cos’ um, ‘cos’ it was fun-ny.’ P6, p2, 60 |
| ‘P: Sometimes I do think… images of your brain are really intrusive. ‘Cos’ I think it’s so personal. But then, at the same time, erm…. I was happy to see it.’ P14, p3, 90 | |
| Neutral | ‘P: And then when I actually went into the room and saw the scan, it didn’t really mean a lot to me, what I saw.’ P11, p3, 83 |
| Negative | ‘C: I could see the scans and I knew what it meanttt. I’d… get a little bit worried and I would cry or something, cos it made me feel upset, ‘cos’ obviously I knew what I’d have to go through again.’ P12, p2, 63 |
| ‘P: I just remember my first thought, thinking ‘That’s it. There you go. [They]’ll um, erm… That’s it. That the end of (Child)’, and knowing that [they]’ll die. (…) Because the tumour was massive.’ P12, p2, 78 | |
| Understanding of images | |
| Images can show | |
| Functioning of the brain | ‘P: it was interesting to see where the er, yaknow the brain, the water brain, the water of (their) brain goes and that.’ P8, p5,161 |
| Anomalies | ‘P: If there is an abnormality, somewhere else as well, like… one side of the head, s’like side of your brain is slightly bigger than the other as well or misshapen, it shows that as well.’ P13, p2, 50 |
| Tumour present or not | ‘NT: Is it (the tumour) the smaller circle or the bigger circle? C: Little one.’ P6, p4, 144 |
| Tumour size | ‘C: I like to know, where it is it in the head, what size is it, is it okay.’ P2, p3, 87 |
| Tumour shape | ‘P: I, I found it really informative to see (the doctor) and then to be able, for (them), to show me, especially with the MRIs with the different dimensions of it. (Child)’s was always changing shape.’ P7, p2, 66 |
| Tumour location | ‘C: So for me, it’s just showing me where the brain tumour isss, in, my head…, really…’ P2, p1, 78 |
| Origins/how long tumour there | ‘C: Ermmm, it (the MRI) can tell you, like what, they, what they need to get rid of (NT: Mmmm.), why it’s there… (…) Erm, how it’s caused, and things like that.’ P8, p2, 66 |
| Next treatment | ‘C: Erm, they (MRIs) might, they might tell you things like chemotherapy and things like that.’ P8, p2, 70 |
| Healing | ‘P: Everything we needed to know regarding the tumour and (their) healing process and if it spread, we knew from, the MRI.’ P6, p12, 398 |
| Everything | ‘NT: Is there anything you think the scans, don’t tell you? C: No. Like it’s all there. Good.’ P5, p4, 118 |
| Images cannot show | |
| The future | ‘C: Can’t tell youuuu, ummm, whether it’ll come back or not.’ P8, p3, 92 |
| ‘P: (Pauses) It can’t forecast anything for you. So it’s only showing a picture of there and now.’ P7, p3, 78 | |
| Next treatment | ‘C: It can’t tell you how long it will be, to wait, for your op ter, actually take place. (pauses)’ P8, p3, 93 |
| When tumour active or not | ‘C: Say if my tumour’s growing when they’d taken a scan, and they can see it over time on the scan, how it grows, without like on the same photo.’ P12, p5, 166 |
| Feelings | ‘C: It, it, it cannot tell how I’m feeling. (Coughs) (NT: Mmmm.)’ (Silence) P3, p5, 183 |
| Origins/how long tumour there | ‘C: (Pauses) Errr, they can’t tell you how…, like, why it’s there, and how -. So, like, so why it’s happened to you… and not someone else.’ P8, p3, 91 |
| When cured | ‘C: (Pauses.) Can’t tell youuuu, ummm, whether it’ll come back or not. (NT: Mmmm. Mmmm.)’ P8, p3, 91 |
| ‘P: But what else does it not tell me? Erm. (Silence) I don’t know. I, I’m not sure. (…) Ya know if it’s gone, or whatever.’ P11, p5, 169 | |
| All the effects from the tumour | ‘P: Can’t show side-effects. Mmmm (…) It shows, what’s goin’ on in the brain physically, but not all the, ‘motions, and the, all theee… that type of side of things.’ P3, p10, 351 |
| Tumour type | ‘P: Don’t know if they could, they wouldn’t be able to tell what sort of tumour it was.’ P8, p3, 85 |
| Confusion | |
| Limits of understanding | ‘C: It cannot ssshow me, my… Um. I dunno.’ P3, p6, 186 |
| ‘P: I wouldn’t, I wouldn’t er, be able to read a scan.’ P8, p4, 114 | |
| Obviousness | ‘C: Obviously to me, a simple scan is easier for me to understand, ‘cos’ I can just, look and understand it straightaway then, ‘cos’ obviously I’ve saw a couple now.’ P2, p4, 142 |
| ‘Seeing is believing’ or proof | ‘P: I don’t like just being told ‘No. Everything’s fine’. (NT laughs) I’m like, ‘Well, hang on, prove to me that it’s fine, first’.’ P13, p2, 57 |
| Putting the image in context | ‘C: My doctor, (they’ll) explain to me, like, how it’s grown and you’ll be able to see ‘cos’ (they’ll) put the photos side to side and you’ll be able to see how they’ve grown, so it’s a lot easier to understand.’ P12, p3, 94 |
| Value of MRIs | |
| Aesthetics | |
| Want to see images | ‘P: (They’re) quite keen to see them, aren’t you? (to child) C: Yeah. Yes.’ P5, p3, 87 |
| Friends and family want to see | ‘NT: And then would you show it (printouts of MRIs) to friends or family or…? C: Yeah. (NT laughs)’ P6, p16, 573 |
| Aiding understanding | |
| Visualising the condition | ‘C: Every time I can remember, they’ve been, quite easy to understand, when I see them. Really, like, for me. ‘Cos’ it’s just, laid out as, where it is in the head.’ P2, p3, 110 |
| Aiding others’ understanding | ‘C: I mean I do show my friends, (…) I’ll more-or-less just say ‘Yeah. It’s fine.’, ‘It’s grown a little bit, it’s shrunk a little bit.’’ P12, p6, 241 |
| ‘This is what you went through’ | ‘P: And when (they’re) old-er, I could say to (my child), this is what you went through, this is how you started, this is how it finished. So (they know) it…’ P13, p3, 87 |
| Contextualised knowledge/emotional benefits | |
| Made it ‘real’ | ‘C: As you get older, (…) you realise, what, what can happen, and you realise the situation you’re in, like, this scan shows what, what can ‘appen. So like how it can still affect you.’ P12, p4, 135 |
| Gave ‘perspective’ | ‘P: Quite shocking, when I was first told. But to actually see the picture puts things into perspective.’ P7, p2, 57 |
| Aids grieving | ‘P: I think, clearly seeing it makes ya- the grieving process a little bit easier.’ P10, p4, 145 |
| Reassurance | ‘C: It’s just nice ter, look at them and see that there’s no change.’ P2, p3, 84 |
| Enhanced control | |
| Feeling more informed and better prepared | ‘P: And then obviously with the pictures, you see a lot clearer ‘cos’ it’s like you know what’s going on. ‘Cos’ otherwise if you didn’t know, then, you’d just be panicking, like ‘What’s going on?’ ‘How are they doing stuff?’ So obviously you have to prepare yourselves, as well, so.’ P6, p4, 138 |
| Keeping for their ‘records’ | ‘P: (Child’s) got a medical drawer, with the letters and thing. We’d probably keep them in there, rather than going to look at them, but they’re there.’ P12, p7, 263 |
| Respecting patient choice | ‘P: I wanna see what’s going on inside. Just ter, peace of mind. But not everybody gonna feel that way. Which is fine.’ P14, p5, 188 |
| Enhanced working relationships | |
| More involved with child’s care | ‘P: It makes you feel that you’re part of the actual… kind of setup. Even though obviously we are part of it, to actually see what’s going on instead of just ‘This is what’s happening.’’ P10, p3, 111 |
| Increased transparency | ‘P: So even though your doctors are saying something, for you to actually see, and see that they’s telling you the right thing… Okay. I, that, that builds even more trust.’ P3, p7, 256 |
| No value | |
| ‘C: Just not really useful to me (to see the MRIs).’ P7, p4, 108 | |
Key: Parents are anonymised as P1, P2… and Children as C1, C2… These are followed by the page and line number from the transcript for the beginning of the quotation.