Based on the findings, three categories with related subcategories emerged: To weigh up participation, A greater challenge than expected, and Not so challenging after all. As this study used a longitudinal design, findings were presented to understand how patients’ experiences evolved through the process.
To Weigh Up Participation
Considering participation in the colonoscopy was affected by an uncertainty of not knowing the conclusion of the procedure and about the procedure itself. However, the professionalism of the healthcare professionals (HP) was trusted.
Uncertainty
Receiving the invitation to colonoscopy and the patient guidelines for bowel cleansing made patients reflect. If the purpose of the colonoscopy was to affirm a cancer diagnosis, the statistics and numbers about cancer presented in the invitation was thought-provoking which made them think about pros and cons for participating. But statistics could be reassuring because it affirmed that undergoing a colonoscopy not necessarily resulted in a cancer diagnosis. This made some patients assume to be amongst those who did not have a cancer diagnosis. Also, it drew their thoughts on the uncertainty of the results and the risk of having a cancer diagnosis, which made them uncomfortable. The speculations led them to think about own or family members´ experiences with cancer.
One patient used words like:
It was receiving the admission. It was stupid. My wife just died of cancer. A year ago, right. So, uhm, we are almost frequent visitors here [the hospital], right. (Patient 1)
Patients also experienced an uncertainty concerning the colonoscopy in general. As it was their first colonoscopy, they did not know enough about the procedure. They questioned the duration of the procedure, how they would lie down during the procedure, whether they would experience pain and the possibility to follow the procedure on screen. Moreover, patients expressed concerns about sedative medicine by saying:
It [the information leaflet, ed] stated that you would be given a sedative. So, I do not know whether it is a pill or a sting you get in your arm, which makes you sleep a little bit. (Patient 2)
To get answers to these questions they sought information themselves. They talked to relatives and their closest friends who had experienced a colonoscopy or looked for answers on the internet such as watching a video. This gave them an idea of what the bowel preparation and colonoscopy was about, which was both calming and worrying. The following quotation illustrated this:
The experience she had of it [the bowel preparation, ed] is completely different from what I have experienced. (Patient 1)
Trusting healthcare professionals
Patients had a clear expectation that the colonoscopy was performed by caring HP. They expected the HP to be kind, including, not rushing to complete the examination and to be competent. They were convinced that the HP would do their best as well:
I rely a lot on our health care. […] they know what they are doing (Patient 2)
The professionalism of the HP was of importance. However, there was a pervasive feeling of uncertainty about the result. Due to this, patients were both interested in and expected to be informed about the result at the end of the procedure. By knowing the result, they did not have to live with the uncertainty more than necessary. This was described by a patient like:
It is an uncertainty about it all […] Well, I know I can close one door after this.
(Patient 5)
Although participating in colonoscopy evoke the feeling of uncertainty patients expressed gratitude for being offered the colonoscopy. They were glad that there was a way to find out if something was wrong. They understood the importance of undergoing a colonoscopy and felt it to be in their own interest, but they also expressed an obligation to participate. A patient expressed this by saying:
After all, there is no way out. You have to. (Patient 4)
The risk in not undergoing a colonoscopy was too great to avoid for the patients. The bowel cleansing and colonoscopy was for the sake of a greater good. If that was what it took to be sure they would do it and they wanted it to be over with.
A Greater Challenge Than Expected
Preparing for the colonoscopy affected daily life and was more comprehensive than expected. Following the instructions was challenging and provided an uncertainty about following them correctly.
Preparation in daily life
The bowel preparation was a challenge. The dietary restrictions were overwhelming and experienced as restrictive, because they did not allow patients to eat what they generally preferred eating. Consequently, patients constantly felt a lack of satiety. A patient expressed her frustration with the dietary change like:
I think that was terrible. I spent the first whole week wondering how I should get any food at all. (Patient 6)
The dietary change was also challenging because they were unaware of the reason for the dietary restrictions and how it could affect the colonoscopy. Additionally, it was tiresome for them to follow a diet plan and they spent a lot of energy adapting to it. The diet changes required planning in daily life. Preparing and eating the special diet also had to be planned in relation to meals for the rest of the family. Patients had to pay special attention to meals at work, so they for example did not risk eating grain. To make sure that they did not eat something that was not stated in the diet plan they brought packed lunches to work.
During the bowel preparation patients were challenged by the bowel cleansing procedure as well. The cleansing liquid was hard to drink. They described it as having a sweet and synthetic taste that was nauseating and a consistency making it hard to drink. Also, they had to drink large amounts of it in a short time, making it more difficult to plan their meals and affecting their sleep. A patient highlighted it by saying:
I could not drink it all yesterday. Maybe I threw out a deciliter the first time. Then I had to get in the middle of the night at 04 to start the next portion. So, I almost did not sleep because I was constantly on the toilet. (Patient 7)
The bowel preparation disrupted the daily life. This was also related to the frequent toilet visits. A patient described her experience with the toilet visits as:
I had to be careful all the time. So, you could feel that it was coming now and then you had to run to the toilet immediately […] I had no control of when it was coming. (Patient 3)
Toilet visits required a lot of coordination as, patients were unsure of being able to hold stool back. Therefore, whether at home or at work they made sure they were close to a toilet. In addition, visiting the toilet frequently was painful and they ended up feeling skinless around the rectum.
To follow the instructions
The patients had confidence in the instructions and followed them closely during the bowel cleansing process. Although there was a lot of information in the instructions to consider. It was difficult to know when to do what. This made them reflect on how challenging it might be for elders or less resourceful people to perform the bowel cleansing properly.
They expressed a great desire for a clearer overview and created their own ways to manage the instructions. To better follow the guideline, simplified strategies were used such as reading guidelines several times and letting relatives take responsibility of the bowel cleansing. In the following citation a patient described his wife having a big part in the bowel cleansing process:
I have a wife who has taken care of the practical part. […] It is actually a huge help. I do not envy those who are all alone with something like this. (Patient 8)
Simultaneously, patients felt that the instructions were deficient. They were very careful about not doing anything wrong and expected their body to respond to the bowel cleansing exactly as described in the instructions. When the body reacted differently than described in the instructions, patients doubted whether they had done the bowel cleansing properly. They expressed that they could be better prepared for the bowel cleansing if the instructions provided more details on side effects and what they could expect during the bowel cleansing. Also, they needed more ideas for meals. A patient described her experience as follows:
I tried to be creative with the things that were listed. I would like if there were more things listed that you could eat, because I was in doubt about some things. (Patient 9)
Different strategies were made to manage food preparation and patients felt that they had to invent creative ways to prepare a meal with the few ingredients that were stated in the guideline. In relation to this they often doubted which vegetables and fruits to eat.
Not So Challenging After All
Undergoing the colonoscopy was a better experience than expected. The behavior of HP provided comfort and patients felt less uncomfortable undergoing a colonoscopy in the future.
The colonoscopy was not as unpleasant as expected and during the colonoscopy, they received a
temporary evaluation on the examination, which was relieving. This experience led them to reassess their experience with the bowel cleansing and to reflect on the true meaning of the colonoscopy. In retrospect, they did not feel the bowel cleansing or colonoscopy to be that challenging and saw the cleansing as a bagatelle compared to what other people went through.
The HP also contributed to a better experience with the colonoscopy than expected. The patients considered them to be competent and they were good at explaining what happened during the procedure. Being exposed during the colonoscopy was transgressive for patients. It made them uncomfortable to think about where the tube was inserted. However, the HP covered them when possible and they felt that the HP’s behavior in general made the colonoscopy less uncomfortable. The HP took care of their needs and were caring. The HP distracted the patients with small talk as well. It soothed them and shifted the focus of the colonoscopy. The use of humor by the HP also facilitated a diversion. This was described by a patient like:
[…] and then we laughed a little. So, I think there was a nice atmosphere […] It loosened up the mood you were going in to. (Patient 10)
Overall HP made the patients feel safe. The feeling of safety could be disturbed during the colonoscopy though. One example was when another physician was called in to perform the colonoscopy, the patients questioned the experience and skills of the first physician. The following quotation illustrated this:
When the other physician came, he could just fix it. It makes me wonder that it required another physician. […] It would have been fine if I had agreed that they could try it [the colonoscopy] for the first time, but I certainly did not. (Patient 7)
Another example was when they were not informed about another physician performing the colonoscopy. Furthermore, the other physician did not introduce himself. Consequently, the patients felt ignored.
Although the above situation left a bad impression on the patients, it did not affect their overall experience with the colonoscopy. Their experience made them feel better prepared for a colonoscopy in the future and they felt less uncomfortable by the thought of it.
The patients still felt that whether the experience of the colonoscopy was positive or negative, depended on the result. They expected to get the result shortly after, because this was stated in the instructions. However, their expectation of response time was not fulfilled. Patients waited several weeks for a response. It made them uncomfortable and they expressed frustration by the long wait.