. 2021 Nov 23;30(3):2591–2604. doi: 10.1007/s00520-021-06663-2

Table 4.

Emblematic verbatims concerning factors related to patients’ representations and pathways

Categories	Themes (number of quotes)	Selected verbatims
Patient’s representations and pathways factors	Representation of medicines (5/17)	- It would be wrong of me to criticize medicines as they have saved me more than once (P8)
- It is something unnatural for me, worked, chemical (P1)
- Knowing that every drug is said to cure you on the one hand, and destroy you on the other (P8)
Internal resources (6/17)	Commitment
- After they give me a treatment, I do that, I am assiduous and I am stupid and disciplined, they give me, I do that (P2)
- You really have to commit to something and it’s not a joke, it’s not I take it and then I don’t take it because I don’t want to take it, no, it’s I take it and I don’t even think about it and I know I have to take it and that’s it. There is a protocol to follow and I do it (P2)
- I never gave myself the choice to say to myself: do I take it or not? That's how it was, I had to take it (P3)
- I can’t see myself not obeying this kind of treatment. I don’t understand why people can’t take it seriously (P17)
Fluctuation of motivation
- We know that fighting and confidence is 50% or more than that. If you don’t have that, you don’t have a chance for drugs (P6)
- Well, I’ve reached such a state if you like … at the moment, it’s pissing me off, but if it’s a stage to get through, so be it (P8)
- I’m fed up, maybe just fed up, fed up with the routine and the suffering I think. There were times when I had strong side effects (P6)
Self-esteem
- I trust the doctor, I trust myself, so I continue to fight and the straight line has been drawn, so let’s go (P6)
- I think that even before the disease, at the moment, I have the character to fight, so I fight, and I don't go looking (P6)
External resources (7/17)	Complementary alternative medicine, supportive care
- What I do, I tell you, is more meditations, relaxation, things like that, but more for the mind (P2)
- I am being followed by a psychologist. Because what happened to me was a lot. It was violent, brutal, so I needed to understand the reasons why. So I see her every two weeks at the moment (P11)
- I am very suspicious now of these alternative medicines actually (P17)
Social ressources
- We go for it and I’m well supported by my family too. My family plays a role too (P6)
Negative belief in medication by family and friends
- But I'm not a fan of using medication. And I have a wife who encourages me not to be a fanatic at all and who would rather I was organic than take the things, you know in alternative medicine (P14)
- On my father’s side, they are people who (laughs) well, they prefer to treat themselves with plants … Well, they take medication like me, well if they have a treatment to follow, they have to, but they are a bit, well, they are more reticent than me (P2)
Previous experiences with medicines (6/17)	Bad personal experiences
- A medication that obviously, it seems, was not very, very good and caused me heart problems (P14)
- I developed a side effect apparently that was not necessarily well known (P17)
Experiences of the entourage
- My mum has diabetes and other pathologies. I’ve seen her swallow a lot of medicine since I was little and that… it’s like a rejection but it’s true that it’s always shocked me (P2)
- Another thing that made me decide to accept it was, I thought about my mum: she has no treatment. We can’t offer her anything. And me, if they offered me something, I couldn’t see myself uh … (P11)
- I know someone who also has the same problem as me 5 years ago. And she is doing very well (P11)
Emotions felt (11/17)	Relief
- I was relieved of the medication and oral part because when you hear the treatment you may have to deal with, these are words that remain quite strong, heavy, traumatic or scary (P1)
- So I was relieved that he might have a solution, an alternative to chemo, and I was satisfied that he continued because if I didn’t want to do chemo, because I didn’t want to do it, I didn’t want to do it anymore because it had been horrible (P8)
- It was a relief to know that it was in pills (P2)
Fears/anxiety
- It was not even the fact of swallowing the drugs that posed a problem for me, it was the side effects and I was afraid of losing my hair (P2)
- At first, it’s a bit scary when you see all the possible side effects. It’s true that it makes you think ‘oh’ (P12)
- The day before I was told about it or the day before, everything was fine, so, um, it was also a question of knowing whether it would change my daily life. it bothered me a lot at the beginning to know whether I would be able to continue to do sport tomorrow, to how to put it, evenings out with friends, aperitifs, alcohol and all that, so there were a lot of questions, a lot of apprehension at the beginning before starting this medication (P3)
- The apprehension was mainly, um, I didn’t want my daily life to be disrupted, so not too much. And work too, because work was important to me, so um … I heard that there were other people who were off work. It’s clearly something I didn’t want (P3)
- I was starting to feel apprehensive and so much so that I said to myself, ‘Gosh, what have I got myself into? Yes, why did I agree to what. And then, yeah, at the beginning of each cycle, the day before, I’m not in the mood (P11)
- I’m actually afraid of the side effects. Much more than whether it works or not. I’m afraid of the side effects that might diminish my quality of life actually, that might prevent me from living normally (P17)
Shame/guilt
- At the beginning I didn’t talk about it much because right away people were like: oh poor guy, oh all that (P3)
- They’re afraid, it’s a big word right away, tumors, cancer, people, especially at my age, it’s grandma who’s 80 years’ old who talks about it, well we say to ourselves that’s nature, that’s how it is (laughs). I’m a bit younger, so people tend to be a bit … I can see that it’s hard for others and I don’t want people to feel sorry for me, so that’s why, especially as I don’t need it (P3)
Perceived benefits of treatment (8/17)	- I was saying to Dr X earlier, what’s harder for me is that I don’t see the purpose (P11)
- That said, I recognize that he also does things that are good for me. We had the results just now, it’s not just anything (P14)
- There is no improvement but there is no deterioration, so the treatment we give you stabilizes the disease well (P16)
- The important thing is to see if it works and the tumor has halved, so I think it was the right drug and I did well to take it (P3)
Help with the taking (6/17)	- I set a 30-min timer in the middle of the meal, or at the end of the meal (P7)
- I put a timer on anyway, because you have to take them 30 min after the meal. I have a timer, so I look at the time to say to myself, well, at such and such a time, because it’s certain that you can quickly go and do something else and then you forget, that’s why I say to you, you really have to be square
- I write down the initials of the days of the week on the back of the plate so that I can remember whether I have taken it or not (P3)

Categories

Themes (number of quotes)

Selected verbatims

Patient’s representations and pathways factors

Representation of medicines (5/17)

- It would be wrong of me to criticize medicines as they have saved me more than once (P8)

- It is something unnatural for me, worked, chemical (P1)

- Knowing that every drug is said to cure you

on the one hand, and destroy you on the other (P8)

Internal resources (6/17)

Commitment

- After they give me a treatment, I do that,

I am assiduous and I am stupid and disciplined, they give me,

I do that (P2)

- You really have to commit to something and it’s not a joke, it’s not

I take it and then I don’t take it because I don’t

want to take it, no, it’s I take it and I don’t

even think about it and I know I have to take it and that’s it.

There is a protocol to follow and I do it (P2)

- I never gave myself the choice to say to myself: do I take

it or not? That's how it was, I had to take it (P3)

- I can’t see myself not obeying this kind of treatment.

I don’t understand why people can’t take it seriously (P17)

Fluctuation of motivation

- We know that fighting and confidence is 50% or

more than that. If you don’t have that, you don’t have a chance

for drugs (P6)

- Well, I’ve reached such a state if you like … at the moment,

it’s pissing me off, but if it’s a stage to get through,

so be it (P8)

- I’m fed up, maybe just fed up, fed up with the routine

and the suffering I think. There were times when I had strong

side effects (P6)

Self-esteem

- I trust the doctor, I trust myself, so I continue to fight and the

straight line has been drawn, so let’s go (P6)

- I think that even before the disease, at the moment,

I have the character to fight, so I fight, and I don't go

looking (P6)

External resources (7/17)

Complementary alternative medicine, supportive care

- What I do, I tell you, is more meditations,

relaxation, things like that, but more for the mind (P2)

- I am being followed by a psychologist.

Because what happened to me was a lot. It

was violent, brutal, so I needed to understand the reasons why.

So I see her every two weeks at the moment (P11)

- I am very suspicious now of these alternative medicines actually (P17)

Social ressources

- We go for it and I’m well supported by

my family too. My family plays a role too (P6)

Negative belief in medication by family and friends

- But I'm not a fan of using medication.

And I have a wife who encourages me not to be a fanatic

at all and who would rather I was organic than

take the things, you know in alternative medicine (P14)

- On my father’s side, they are people who (laughs) well,

they prefer to treat themselves with plants … Well,

they take medication like me, well if they have a treatment to follow,

they have to, but they are a bit, well, they are more reticent than me (P2)

Previous experiences with medicines (6/17)

Bad personal experiences

- A medication that obviously, it seems, was not very,

very good and caused me heart problems (P14)

- I developed a side effect apparently

that was not necessarily well known (P17)

Experiences of the entourage

- My mum has diabetes and other pathologies.

I’ve seen her swallow a lot of medicine since

I was little and that… it’s like a rejection but it’s true that it’s always shocked me (P2)

- Another thing that made me decide to accept it was,

I thought about my mum: she has no treatment.

We can’t offer her anything. And me, if they offered me something,

I couldn’t see myself uh … (P11)

- I know someone who also has the same problem as me 5 years ago.

And she is doing very well (P11)

Emotions felt (11/17)

Relief

- I was relieved of the medication and oral part because when you

hear the treatment you may have to deal with, these are words that remain

quite strong, heavy, traumatic or scary (P1)

- So I was relieved that he might have a solution, an alternative to chemo,

and I was satisfied that he continued because

if I didn’t want to do chemo, because I didn’t want to do it,

I didn’t want to do it anymore because it had been horrible (P8)

- It was a relief to know that it was in pills (P2)

Fears/anxiety

- It was not even the fact of swallowing the drugs that posed a problem for me, it was the side effects and I was afraid of losing my hair (P2)

- At first, it’s a bit scary when you see all the possible side effects.

It’s true that it makes you think ‘oh’ (P12)

- The day before I was told about it or the day before,

everything was fine, so, um, it was also a question of knowing

whether it would change my daily life. it bothered me a lot at the beginning to

know whether I would be able to continue to do sport tomorrow,

to how to put it, evenings out with friends, aperitifs, alcohol and all that,

so there were a lot of questions, a lot of apprehension at the

beginning before starting this medication (P3)

- The apprehension was mainly, um, I didn’t want

my daily life to be disrupted, so not too much.

And work too, because work was important to me, so um …

I heard that there were other people who were off work.

It’s clearly something I didn’t want (P3)

- I was starting to feel apprehensive and so much so that I said to myself,

‘Gosh, what have I got myself into? Yes, why did I agree to what. And then, yeah,

at the beginning of each cycle, the day before,

I’m not in the mood (P11)

- I’m actually afraid of the side effects.

Much more than whether it works or not. I’m afraid of the side effects that might diminish my quality of life actually, that might prevent me from living normally (P17)

Shame/guilt

- At the beginning I didn’t talk about it much because

right away people were like: oh poor guy, oh all that (P3)

- They’re afraid, it’s a big word right away, tumors,

cancer, people, especially at my age,

it’s grandma who’s 80 years’ old who talks about it, well we say

to ourselves that’s nature, that’s how it is (laughs).

I’m a bit younger, so people tend to be a bit … I can see that it’s

hard for others and I don’t want people to feel sorry for me,

so that’s why, especially as I don’t need it (P3)

Perceived benefits of treatment (8/17)

- I was saying to Dr X earlier, what’s harder

for me is that I don’t see the purpose (P11)

- That said, I recognize that he also does things

that are good for me. We had the results just now, it’s not

just anything (P14)

- There is no improvement but there is no deterioration, so the treatment

we give you stabilizes the disease well (P16)

- The important thing is to see if it works and the

tumor has halved, so I think it was the right drug and I did

well to take it (P3)

Help with the taking (6/17)

- I set a 30-min timer in the middle of the meal,

or at the end of the meal (P7)

- I put a timer on anyway, because you have to take them

30 min after the meal. I have a timer, so I look at the

time to say to myself, well, at such and such a time, because it’s certain

that you can quickly go and do something else and

then you forget, that’s why I say to you, you

really have to be square

- I write down the initials of the days of

the week on the back of the plate so that I can remember

whether I have taken it or not (P3)