Table 3 Main themes, sub-themes and data codes.
Theme One: | Understanding of malnutrition, sarcopenia, and cachexia | ||
Dissonance | Lay understanding of malnutrition, sarcopenia, and cachexia (macro) | No, not heard of that (sarcopenia) before (Pt1) | |
Q: …it’s the word cachexia. A: No, nah you’ve missed me again (Pt5) | |||
Detachment of self-view | It’s not, it’s not something that I take seriously, because it’s not going to happen to me. Yeah (Pt8) | ||
Impact of malnutrition, sarcopenia, cachexia (macro) noticeable | When I could just get out of a chair, getting up, getting showered, getting dressed, wiped me out for the rest of the day (Pt1) | ||
Expected management | You need physiotherapy, you need work, you need to muscle to move again, cos if you don’t do that you stiffen up, and that makes it worse, so that’s what I want, I want Action (Pt8) | ||
Make sure you eat as nutritionally as you can, which will help you feel better, an cope with the treatment better. I think that’s a bit of common sense as well but erm I think they are helping you think you know it is important to keep, erm eating as healthy as you can (Pt3) | |||
Well, posh meal somewhere, or, or something like that, anything just to perk things up a bit (Pt8) | |||
Function as a priority | Getting showered, getting dressed, wiped me out for the rest of the day, and you know, it was just, or we planned to go somewhere and you know I would just, say I couldn’t come! (Pt1) | ||
Motivators to, and barriers for change | Somebody tried to, they came in and tried to but I think at that time I wasn’t very receptive anyway (Pt4) | ||
Perceptions of risk | |||
Confidence in past health | Er, no cos I’m a very good eater, or I was (Pt8) | ||
No, not really, as, as I think I’ve told you, I was, big, pretty fit, so… erm, didn’t go into it about… (Pt7) | |||
Unhelpful generic advice | Yeah, they have said well try and do as much as you can, when you can (Pt3) | ||
You know, make sure you can eat as healthily as you can, er (Pt3) | |||
Opposing macro and micro views of nutrition and weight loss—Contradictory inevitabilities | Well, it’s (feeding tube) keeping me living, for starters (Pt5) | ||
Well, I suppose it’s all part and parcel int it, really, I mean luckily I can eat, so I won’t ever get, er, malnutrition type of thing, but er, if it got worse, then you would (Pt5) | |||
Theme Two: | Overlooked and underplayed: cancer and treatment as priority | I call it a fitness test, and the results go to the consultant who’s supposed to do the surgery, and that will decide if I am fit enough to have the operation. So that is what I am aiming for (Pt2) | |
Diagnostic overshadowing | Always comes back to the cancer | Sometimes it’s as though cancer is your first thought about everything, and I thought there’s life beyond that (…) you know coming along in the car I said you know that’s all we’ve talked about, we’re an hour away from here, about treatment and what the futures going to hold (Pt8) | |
Nutrition and function disregarded by clinicians | And we… were… not fobbed-off that’s too strong a word, but nothing really materialised… except we were able to see [DIETITIAN] and from that point on things, things have happened since (Pt1) | ||
Explaining unexplained weight loss | Well that, well that’s inevitable really I think everybody eventually succumbs to that process (Pt8) | ||
You’re compensating for your growing old aren’t you? (Pt8) | |||
Not a medical problem | Yeah I think that they thought that they were concerned about us as a person, rather than us as a patient, our wellbeing was as important as the treatment they were giving (Pt3) | ||
Theme Three: | Weight loss noted | Erm and then I only noticed, you [HUSBAND] said that I was getting thinner, and then all of a sudden I noticed, and when you notice yourself that you are… (Pt1) | |
Between a rock and a hard place | Rapid and visual weight loss | And it was, it was quite severe, so… we got, we went off to see the doc (Pt4) | |
I realise when, when things like, well the biggest thing that prompted me was when my wedding ring fell off, and, ha, I thought that’s a bit strange [laugh] (Pt7) | |||
Difficulties raising and talking about weight loss | Erm, well erm, been dreadful really, I mean frightening [cough], very frightening (Pt6) | ||
I think it was just a question of persuading somebody that, er I thought the weight loss was quite dramatic… (Pt1) | |||
The only frustration was this weight loss, lack of energy started to arise, just getting somebody to take it onboard which has now happened (Pt1) | |||
Inevitability of weight loss/poor function (acceptance) | Resigned? You can’t help but be resigned, I mean, I can’t do the things that I used to do now, I’m reconciled to it, what I do say though is that I’ll make the best of what I’ve got left (Pt8) | ||
Well it’s alright, it just realise that I can’t eat as much as I could (Pt7) | |||
Screening as an outlet | I think in a way, it was at the back of my mind, and that’s why that, that sitting down and standing up (functional assessments), brought it, if you like, to my mind (Pt2) | ||
Theme Four: | Benefits from screening assessment | But it’s good having the advice [pause] rather than thinking about it, thinking am I gonna make things worse you know leaping up and down or whatever (Pt5) | |
Study screening | Helps if you’re talking about it… it’s better than it kind of left in the dark and only me knowing (Pt5) | ||
I don’t sort of find it intrusive, I don’t find it you know, sort of difficult (Pt1) | |||
Screening issues (barriers) | No, not really, as, as I think I’ve told you, I was, big, pretty fit, so.. erm, didn’t go into it about… (Pt7) | ||
Yeah my strength isn’t as good as it used to be, but luckily for me I was I was very strong to start with… yea… my legs are the weakest, er ya luckily I was strong when all of this hit me so hopefully I can fight back some way (Pt7) | |||
