Table 5.

Codes Which Emerged from the Patient Focus Groups: Experiences/Perceptions

Code	Topic	Verbatim
Fears	Worsening during waiting period	“They told me ‘it’s benign, and the waiting list is the one we have … ’, but I feel like maybe one day it hurts a lot and I will have to go to the emergency room, and they will have to urgently perform the surgery”
	Anaesthesia	“I was very afraid of anaesthesia, very afraid, more afraid of anaesthesia than seeing that my uterus and ovaries were removed; to be completely asleep, I was afraid of not waking up, you know?” “I was afraid, because I had heard that when you wake up from anaesthesia you start saying nonsense ….” “My fear is what I told you at the beginning, to wake up again in the middle of surgery, which has already happened to me, because they didn’t calculate the anaesthesia well”
	Surgery room	“The moment you enter an operating room … that scares everyone, no matter how experienced you are” “I still think, and I will always think, that the psychological aspects affect people a lot, but in my case in particular, I am afraid of not leaving the operating room”
	Postoperative period	“After surgery, I could not move my feet until the second day at noon, and I was afraid that I remain, as I say, paralytic” “I fear being dependent in this period of my life. I am young, I ask myself how active I will be able to be, if I will be able to remain as a person my age or not”
Emotional impact	Hospital environment	“The nurse looks at me and tells me “Let it go, come on, let it go!” And I respond like this “Whooooou (crying) … ” and she asks me “Better? Have you stayed at ease?” “When I went to the room, all was very well, but I couldn’t stand being talked to, I couldn’t stand the light, I couldn’t stand anyone … ”
	Hospital discharge	“I cannot live a life because I am very tired, because of the surgery, because of the malnutrition. My convalescence is being delayed a lot, although the doctors say that the surgery was a ‘big success’, but they are not aware of my everyday life” “You have to adapt to that change, from this life, to that life, and it is a completely radical change. Any type of surgery is a change” “You are the patient, and you want to be strong when you have small children, … and I know that I have not been the only case of people who want to be strong, because I do not want my mother to suffer, I do not want my husband to have a bad time, I don’t want my children to …”
Pain	Flexibility	“Asking for analgesics because I felt pain … they say “Ha! We cannot give you more because you have Crohn’s disease”, and I say “Let’s see! You must have something even if it is ‘super’ and leave me half asleep” “Every night I was telling myself “My God! Don’t wait until 12 o’clock, give me the pill at 11 please, give me the pill at 11 so I can sleep … ” “They dropped this sentence: “What if you like it? Because here, people become addicted, moreover being young like you”
Stress and anxiety	Uncertainty	“They say ‘We will call you for surgery … ’, and then summer arrives, and I am here, with ‘the thing’ inside me …, I think there has been no summer that I have been more alert of the cell phone” “The recovery time overwhelms me, someone tells you: ‘4 or 5 days of hospitalization’, ‘okay and then what?’ I say. Will I be able to continue my life as usual? When am I going to be ready to do my work? How am I going to take it?”
Implication in decisions	Implication in decisions	“The gastroenterologist says … the surgeon says … the oncologist says … the radiotherapist says … well, I’d like to be there and give my opinion, be part of the decision …” “They said I was not a candidate for surgery because I was young, for me 44 years did not seem that young, … they said they had to be careful if I wanted to have more children, … I said I have enough with one …” “I was not given the option of epidural or not”
Privacy	Data privacy	“Data protection is very fashionable, but I share a room with a partner … I find out all his data, he finds out about mine”
	Privacy	“How do you feel? I feel naked with everybody entering the room”