Background
Methods
Setting
Sample
Data collection and analysis
Themes | Examples of questions |
---|---|
Experiences of the beginning of the disease trajectory | Can you tell me how it all started? From the very beginning? |
Experiences of everyday life problems in relation to disease | Please describe how an ordinary day unfolds for you now after your surgery |
Experiences of return to home. Challenges, symptoms, digestion, working | How do you manage an ordinary day? Experiences of: Symptoms? Challenges? Needs? |
Experiences of the ambulatory visit as an outpatient | What was your experience of your latest follow up visit? What did you talk about? |
Have you experienced any new or unresolved issues after your last outpatient visit? | |
General experience | Please describe follow-up support that has been helpful for you? Not helpful for you? |
Rigour
Results
Patients
Themes
Themes and sub-themes | Brief description of sub-themes | Number of patients experiencing the sub-themes |
---|---|---|
Disrupted gut | ||
The weakened body | Patients suffered from a range of gastrointestinal symptoms which negatively affected their digestion and prevented them from being fully active and participating in everyday activities and social life. | 12 |
Fighting cachexia | Patients struggled to maintain or regain weight. They spent all their energy and time preparing and eating snacks. | 10 |
Re-aligning to the altered body | The patients experienced bodily changes that they were forced to get accustomed to. | 12 |
Recovery work | ||
The value of municipal rehabilitation programmes | Patients worked hard to regain strength and acknowledged the municipal health care centres for helping them do so. | 10 |
Reclaiming the sociality of meals | Patients wanted to go out to restaurants and eat with friends; however, it was overwhelmingly burdensome to have to explain why they only could eat small portions or suddenly had to go to the toilet. | 5 |
Going back to work | Actively employed patients wanted to go back to work as this symbolised normality life as it was before. | 8 |
Disrupted gut
The weakened body
“My stomach was really bad after the surgery. You know, sometimes I didn’t even have time to get to the toilet. Not strange considering that it (the food) has to go through a completely different route, right. And I mean it (the stool) was literally water”. (Patient number 5).
“And sometimes I have to go to the toilet NOW. And one day when I was on my way to the hospital I had to ask the driver to stop. And luckily there was a rest area and a toilet. And I remember I thought that if it hadn’t been there it would have been a disaster”. (Patient number 12).
“Boy – I couldn’t even get up out of my chair and stand on my own two feet to begin with. I never thought I could be so weak. And getting to the first floor… that was almost… that was like running a marathon. So – uh – I stayed down here on the ground floor”. (Patient number 3).
“Well, I’ve increased my dosage of Creon without asking anyone”. (Patient number 10).
Fighting cachexia
“I was given about a thousand different leaflets while I was in the hospital. You don’t get round to reading them. I’m probably a bit slow to get the hang of it – you know all the time it’s about snacking and I’m not used to eating snacks all the time. And if I have to, I get the feeling that I’m eating all day long. And that I have to prepare food all day long because all the time you can prepare this and prepare that. But I mean I’ve more or less just finished my breakfast when I have to start thinking about lunch”. (Patient number 10).
“So they tried to get me to eat as much as possible but uhh… It was really hard for me and still is – unbelievably hard. Because I couldn’t hold very much food, and then I got dumping symptoms with hot flashes and I felt really terrible. And I threw up so many times… I had an appointment at the oncology department which I had to cancel because I simply couldn’t go anywhere (because of nausea)”. (Patient number 11).
“Uhh food tasted so bad – anyway that’s how I felt. I’m not choosy and I’ve never been choosy so it’s not because I didn’t like food, but all of a sudden I almost couldn’t… I more or less couldn’t eat anything”. (Patient number 2).
Realigning to the altered body
“….to me everything has to do with my body. I mean the thought of not having a duodenum any longer, it’s missing, I think about that constantly”. (Patient number 1).
“Everything has been moved around inside – so it’s not like it was and on top of that my stomach it’s… it’s all wrong.. I’ve got this bulge here…and bulges here as well…” (Patient number 2).“…ughh I’ve struggled so much to eat so I could put on weight and I don’t think it looks good to be so skinny. I look terrible I mean you can see my ribs and everything. And when I got home I looked at myself in the mirror and saw the big scar after the surgery and thought to myself this can’t be you. It felt completely wrong”. (Patient number 11).
Recovery work
The value of municipal rehabilitation programmes
“What’s been great is that the physiotherapist, dietitian and psychologist work closely together. And they meet with each other. We meet with them”. (Patient number 6).“ The physiotherapist who is my contact person said that I should join up and train at the same time as I was doing the municipal training. Because it’s a good supplement so… And well, at 3 pm I’m going over there (Fitness World) right. Twice a week. It’s great (laughter)”. (Patient number 5).
Reclaiming the sociality of meals
“..It’s a bit hard when you go out to a restaurant to eat, I can tell you. Because you get all these questions….Why… don’t you like the food? Is there something wrong with the food? Just because you can’t eat up. Yes, and uhh you don’t really have the strength to go out because you’re thinking here it comes again, I have to answer all those questions again, again, again, again, right… And somehow I think it’s a bit annoying to have to explain each time, right…I also remember last summer we were hanging out in the city and the sun was shining. I was drinking a soda, and my friends were drinking cold beers. And I was just sitting there…right.” (Patient number 2).
Going back to work
“ You feel that you’ve been put on hold, that you can just sit at home and watch others getting on with their lives and that’s not a good feeling. So I want to get back to work. Of course I can do some gardening and stuff like that but it’s not the same”. (Patient number 1).
“It was nice to know so I also knew that I could take the time I needed. That my work place would be patient with me. I didn’t have to be concerned about that part. And as things went along I was on sick leave longer than I had thought just as my boss had said all along. I was gone for about 6-7 weeks before going back. And then I more or less didn’t do anything except be there for a few hours and then I went on my holidays and after that back to work for a few hours a day where I started to do a little work and then gradually I started doing more and more”. (Patient number 9).
“Well I called my work before going back and said that I’d like my boss to tell my colleagues (sobs) that it was alright to give me a hug and say hello but I didn’t want anyone asking me how I felt. Because, I just wanted to do my job. And feel normal again (sobs). And that also allows me to choose who I want to say what to”. (Patient number 7).