A colonoscopy is a commonly used examination that is often experienced as uncomfortable, painful, and/or embarrassing (Kaminski et al., 2017). As a result, many patients hesitate to go through with the procedure (Sultan et al., 2017), but an absent colonoscopy may delay lifesaving diagnostics and/or crucial treatment (Atkin et al., 2017; Ferlitsch et al., 2017). Therefore, it is important that the procedure is well tolerated by patients and of high quality (Rees et al., 2016). Patients who have undergone the procedure can give valuable information about the experience and contribute to increased knowledge that can then be used to develop evidence-based quality measures.
In recent European guidelines regarding performance measures for lower gastrointestinal endoscopy, the patients' experiences are highlighted as one of seven quality domains (Kaminski et al., 2017). The guidelines argue that examinations such as colonoscopy should be conducted in a patient-centered way (Armstrong et al., 2012; Rizk et al., 2015; Rutter et al., 2016). However, research aimed at capturing patients' experiences of colonoscopy is limited (Kaminski et al., 2017). Further studies on patient-centered care during endoscopic procedures are required, and the first step in this process is to develop an understanding of the patients' experiences and needs (Tierney, Bevan, Rees, & Trebble, 2016).
Previous qualitative research has addressed the patients' experiences of undergoing a colonoscopy procedure. Three studies focus on a specific period: one on the time prior to the examination (Kimura, Sin, Spigner, Tran, & Tu, 2014), and two on the time during the colonoscopy procedure: comparing the experiences of colonoscopy with those of MR colonography (Hafeez et al., 2012) and comparing CT colonography or barium enema (Von Wagner et al., 2009). In addition, Neilson et al. (2020) explored which care aspects 10 patients considered important for them when they underwent a colonoscopy, and two other studies explored anxiety in relation to colonoscopy, particularly before and after the procedure (Mikocka-Walus, Moulds, Rollbusch, & Andrews, 2012; Rollbusch, Mikocka-Walus, & Andrews, 2014). None of the studies report comprehensive in-depth findings that explicitly reflect the patients' experiences of undergoing a colonoscopy, more specifically, the preparation, the procedure itself, and then the first 24 hours after the procedure.
When awaiting a colonoscopy, patients seem to frequently react with anxiety (Yang et al., 2018) related to the entire colonoscopy procedure, from the preparations to the results of the examination (Mikocka-Walus et al., 2012; Shafer et al., 2018). However, patients undergoing the examination for the first time are more anxious before the colonoscopy than patients with previous experiences of the procedure (Rollbusch et al., 2014; Shafer et al., 2018). One reason for this may be that patients' understanding of the colonoscopy shapes their expectations (Mikocka-Walus et al., 2012).
Pain has also been associated with colonoscopy; for instance, a multicenter study shows that approximately 15% of those studied reported severe pain (Hoff et al., 2006). Further, women reported more pain than men, suggesting that the female gender has an increased risk for painful colonoscopy (Bytzer & Lindeberg, 2007; Larsen et al., 2002; Ylinen, Vehviläinen-Julkunen, & Pietilä, 2009). In the interviews, the description of colonoscopy-related pain ranged from being occasionally painful (Von Wagner et al., 2009) to continuous, severe pain (Hafeez et al., 2012). In addition, some also described it as being more painful than expected (Rollbusch et al., 2014).
Taken together, these experiences may influence a patient's willingness to repeat the procedure (Rollbusch et al., 2014). Today, a comprehensive view of how patients experience a colonoscopy procedure is limited, and therefore further research is needed. In conclusion, the patient experience matters and is essential for healthcare and its progress toward quality improvement.
The aim was to explore adult patients' experience of undergoing a colonoscopy, regarding the time prior to, during, and after the procedure.
The method used was that of a qualitative approach in which the data was derived from 24 individual face-to-face interviews, which were analyzed using thematic analysis (Braun & Clarke, 2006).
Inclusion criteria were adult outpatients (>18 years) who were scheduled to undergo an elective colonoscopy for the first time. In addition, they had to speak and understand Swedish and be able to consent freely. The sampling strategy was purposeful and aimed for variation in age, indication for colonoscopy, and medication (see Table 1). Eligible patients (n = 84) were invited to the study by an invitation letter sent 1–4 weeks prior to the colonoscopy procedure.
TABLE 1. -
Characteristics of Participants (n
Median (range in years)
|Origin of birth
Outside Sweden (Europe)
On sick leave
|Indication for colonoscopy
Suspected cancer (iron deficiency/anemia, rectal bleeding, changed bowel habit, pathologic x-ray findings)
Other clinical symptoms (diarrhea, suspected inflammatory bowel disease, abdominal pain, obstipation, radiation proctitis, surveillance)
Colorectal cancer screening
Conscious sedation (midazolama and oxycodoneb)
Deep sedation (propofolc)
aMidazolam 1.25–7.5 mg to nine of the conscious sedated patients.
bOxycodone 2.5–5 mg to 10 of the conscious sedated patients.
cPropofol 210–320 mg to three of the deeper sedated patients.
Before the scheduled colonoscopy procedure, the patients were verbally invited to participate in the study by a registered nurse during admission. Of the 84 invited patients, 24 agreed to participate, 25 declined, 21 cancelled the colonoscopy, one was unreachable, seven did not fulfill the inclusion criteria, and six were not asked when admitted.
Once the patients (n = 24) agreed to participate in the study, they were asked to give their telephone number and what time of day they preferred to be contacted. They were then contacted within a week after the colonoscopy procedure to schedule an appointment for an individual interview. The participants chose the location for the interviews, resulting in 16 taking place at Malmö University, four in the participant's home, and four at the participant's workplace. All the interviews were conducted in a quiet room without distractions.
Setting and Procedure
The study was conducted at an Endoscopy Unit at a University Hospital in the southern part of Sweden. Written instructions regarding the procedure and the bowel preparations were sent to the participants 1–4 weeks before the scheduled colonoscopy. All the participants underwent a split-dose 4-L polyethylene glycol regimen for bowel preparation and were given dietary restrictions 24 hours before the planned examination. The bowel preparation took place at home, and the participants were to arrive at the Endoscopy Unit 30 minutes before the colonoscopy. Upon arriving at the unit, they changed into clothes suitable for the colonoscopy procedure, including a pair of disposable dignity shorts and a hospital gown. Prior to the procedure, they also received a peripheral venous catheter and received information about the colonoscopy procedure by a registered nurse. The prepared participants waited in a gender-mixed area. All the colonoscopies were completed to the cecum and were carried out by experienced physicians. Any sedation was customized in agreement with the participants. After the procedure, the participants recovered for at least 30 minutes before being discharged to their home.
Twenty-four participants were interviewed by the first author. The recruitment period was from December 2018 to May 2019. The interviews stopped at 24 participants, as this was deemed the redundancy point for achieving the aim. The data collection took place 3–25 days (mean 8.5) after the colonoscopy procedure. Before the interviews started, verbal information about the study was repeated, and the participants were encouraged to ask questions about the study.
The participants were asked to share their experiences of undergoing the colonoscopy procedure by beginning the interview with the opening question, How did you experience the colonoscopy during the time prior to the procedure, during the procedure itself, and then in the first 24 hours afterward? This was followed by probing questions to obtain more detailed responses. The interviews were audio recorded, lasted between 25 and 63 minutes (mean 40 minutes), and transcribed verbatim. At the end of the interview, the participant was asked about background variables. Data regarding indication for the colonoscopy, received medication, and the physicians' endoscopy report were subsequently collected from medical records.
To capture and reflect the participants' perspective, the data were analyzed using thematic analysis according to Braun and Clark (2006). The thematic analysis was data-driven, and patterns within all the collected data were identified inductively. To scaffold the process of analysis, it was carried out in six phases.
In the first phase, the transcribed interviews were read multiple times to become familiar with the data while notes and initial ideas for coding were written down. In the second phase, repeated patterns of meaning that were identified within the data formed the initial codes. The initial codes from each interview resulted in 24 different mind maps. The mind maps aimed at organizing the data into meaningful groups, thus highlighting distinctive characteristics.
During the third phase, the search for themes began by collating all the different codes from the 24 mind maps. Codes and the relationships between them were visualized with the first version of a comprehensive thematic map. During this process, an interpretation was made and significant repeated patterns regarding implications and broader meanings were highlighted.
In the fourth phase, the themes were analyzed regarding their coherent patterns within all the data; meaning, if a theme did not have a clear distinction, it was reworked and new themes were created. Further, the themes were reviewed, in relation to all the data to ensure that they accurately reflected the meaning. During this process, potential subthemes were identified.
In the fifth phase, the theme's final essence was defined. Lastly, in phase six, the themes were named and reported. During the data analysis, all the authors were involved, and continuous discussions took place throughout the entire process.
This study was designed in accordance with the Declaration of Helsinki (World Medical Association, 2013). All participants received oral and written information about the study prior to the colonoscopy procedure. They signed the written consent form and were informed of their right to withdraw their participation at any time without explanation. The study was approved by the Swedish Ethical Review Authority (Dnr 2018/373).
The participants experienced undergoing a colonoscopy procedure as a process of entailing themes: Making up one's mind, Getting ready, Going through, and Finally over, as shown in Figure 1.
Making Up One's Mind
The participants described the process of deciding to undergo a colonoscopy to be characterized by feelings of uncertainty about what to expect. This theme consists of two subthemes, To gather information and To reflect emotionally. The participants' expectations prior to the colonoscopy differed depending on their understanding of the procedure and their emotional thoughts.
To Gather Information
Each participant's response varied regarding in what way and to what extent they preferred to be informed about the colonoscopy procedure. Some participants were content with the formal information given by the Endoscopy Unit staff, whereas others used a variety of methods to gather additional information. One source was the Internet, which was used to search for concrete information and possible explanations regarding symptoms and the potential diagnosis. In addition, searches of what to expect and what was going to happen during the preparations and the procedure alleviated the uncertainty. However, the criticism about the information source could be important for the participant's expectations regarding the upcoming colonoscopy procedure.
Then it might be good to know others' view in the matter. I believe that is needed. If I hadn't searched for information on the internet ... you can find everything [laugh]. The question is, what can you trust [laugh]? What is true and real ...? (Interviewee #6)
Other participants preferred to gather information from laypersons and were given a range of advice about how to cope with the colonoscopy. These advices were often unreliable and lacked empathy for the participants. Some of the stories had a touch of dark humor and often emphasized negative aspects such as a colonoscopy being painful and the bowel preparation hideous.
To Reflect Emotionally
When the participants faced the colonoscopy, a range of emotions surfaced. They could be nervous, anxious, and experience fear because they did not know what to expect regarding the preparations, procedure, and result. An upcoming colonoscopy could trigger existential thoughts, and the participants may fear a cancer diagnosis, as was the case with Interviewee 15.
Yes, I was afraid of cancer ... to say it in a rather crass way. I thought, “Am I not to experience life any longer ...?” Those were the feelings that popped up in my head. Even though I know that I am aging, I'm not 20 anymore ... even so, I thought, “I would like to stay a bit longer” [laugh]. (Interviewee #15)
Motivated by the desire to know what was causing their symptoms, the participants felt that they did not have any option other than to proceed. Some described feelings of hope, and they even looked forward to undergoing the procedure as it may remove some of the uncertainty surrounding their symptoms. Other participants explained that if it turned out that they had cancer, then they wanted it to be found in time for treatment, as this would increase their chances of survival.
The theme Getting ready is characterized by experiences of self-care, where the participants made efforts to prepare themselves so they would be in as optimal a condition as possible prior to the colonoscopy. It consists of three subthemes: To struggle with instructions, To endure the bowel preparation, and To gain support.
To Struggle With Instructions
The participants wanted to follow the instructions properly. However, each participant experienced the written instructions they received prior to the colonoscopy procedure differently. Some participants were content and experienced the information as good, clear, and informative whereas others missed vital pieces of information that were considered as key elements for them to succeed in their preparations. In addition, some participants needed verbal confirmation by the healthcare professionals that they had understood the instructions. Accordingly, some participants experienced the information as inexplicit and that it lacked, for instance, adequate information about the low-fiber diet prior to the bowel preparation.
You are afraid to eat something that is bad for the examination or that will make the examination impossible to carry out ... I believe I have an idea of what contains fiber ... but still, it feels good to know that you are doing the right thing. (Interviewee #16)
To Endure the Bowel Preparation
For some participants, the lack of previous experiences of bowel preparation led to uncertainty and speculations about the impending defecation. Vivid memories of the intrusive effect of the bowel preparation were described in terms of opening a tap, violent defecations, and fountains. In addition, the participants were aware of the importance of adequate cleanliness and wanted to successfully perform the bowel preparation. The level of motivation was an important factor for their willingness to master the task of adequate bowel preparation and adherence to the instructions given.
It is because you want to be ready for the examination. You just have to stay in line, get on with it [laugh] ... [to be hesitant about going through with the bowel preparations] won't do you any good in this situation. You shouldn't come up with your own solutions ... it is what it is. (Interviewee #4)
The experiences of the low-fiber diet prior to the bowel preparation differed. Some described experiences of exhaustion, whereas others perceived it as a process of purification. Regardless, the bowel preparation was experienced as burdensome, and some even considered that the cleansing could even be worse than the colonoscopy itself. The inconvenience was caused by having to drink large quantities within a certain time frame and having to drink a solution that tastes bad.
Yes, I poured a big glass and then I started to drink. I drank, and drank, and drank, and drank ... until I reached 1 liter ... And then, you know, you have to start all over again. It was like a beer-swilling competition where you are supposed to drink a LOT. (Interviewee #23)
The participants mentioned the taste of the solution with a diversion of descriptions as not very good, disgusting, or sickening. They explained that if the solution was refrigerated, it had less of a bad taste, which they appreciated. On the other hand, if it was too cold, they experienced discomfort and needed to drink hot broth or take a warm shower to overcome the feeling of “hypothermia,” as with Interviewee #8: “I took a shower because I was freezing a lot; afterwards, I felt better.” Having completed the bowel preparation, they experienced physical tiredness, but some felt proud of themselves for having overcome the difficulties.
To Gain Support
The support from a next of kin during the preparations was valuable and an important facilitating factor in their preparations to succeed. The support was often practical; for instance, reading the instructions together and keeping track of time during the bowel preparation. Help with transportation to the Endoscopy Unit and with childcare was also appreciated.
Yes, my mother picked up my daughter at the preschool ... and actually, she stayed and put her to bed ... because during the night, I was feeling unwell due to the laxatives. (Interviewee #13)
The theme Going through illuminates' feelings experienced during the colonoscopy. The theme consists of four subthemes: To feel respected, To wait for one's turn, To feel involved, and To experience physical and emotional sensations.
To Feel Respected
According to the participants, the first impression, when they met the healthcare professionals, mattered for a positive experience, and they had different stories about to what extent the staff made them feel respected. Common in all these stories was how the staff had been successfully responsive to the participants' individual needs. Some participants experienced humor and small talk as a diversion from their apprehension of the colonoscopy procedure, whereas others experienced dignity when the healthcare professionals had treated them as individuals with due respect by, for instance, introducing themselves: “When you are being well treated, it feels positive and healing” (Interviewee #5).
The participants did not experience the colonoscopy as a pleasant procedure, and therefore some of them expressed that they appreciated if the healthcare professionals treated them in a way that made them feel calm and safe.
Well, you know, the examination isn't a fun one ... They were very ... I thought that they were very considerate and that they seemed to realize that no one would enjoy such an examination ... In such an examination, one is very exposed indeed. (Interviewee #15)
A friendly atmosphere enhanced some of the participants' experiences in a positive way. Verbal information and explanations of the procedure were experienced by some of the participants as calming, as it often made clear what was happening to them and around them during the colonoscopy procedure.
I must say, the doctor who did the examination explained that it can be painful now for a while, so you need to relax ... It was nice and relaxing, you felt calm when he talked. (Interviewee #24)
Some participants appreciated the comfort of receiving a blanket, as it made them feel less physically exposed and the action was described by them as a gesture of warm respect and care.
To Wait for One's Turn
While waiting for one's turn, in the gender-mixed waiting area wearing dignity shorts and a hospital gown, some of the participants had feelings of wanting to disappear. They felt embarrassed and referred to private parts, privacy, and not wanting to expose themselves.
You get a pair of shorts ... with a hole in it, and it feels rather strange to have to change clothes knowing that there is a hole in the bottom ... Well, of course, I got a robe too [laugh], but still ... it felt ... it was embarrassing ... I knew that there would be a hole in the shorts, but maybe not everyone would. (Interviewee #14)
In contrast, some participants simply laughed at the memory of the dignity shorts and described them as comical, but at the same time, clever and practical. Regardless of experienced feelings, the participants were determined to get the colonoscopy done. During the waiting time prior to their colonoscopy, some of them were comforted by seeing fellow patients in the same situation. While waiting for one's turn, the setting was described as being admitted on to a moving conveyor belt. This was experienced by some as negative and depersonalized, whereas others considered it a sign of effectiveness.
Everything was so damn fast. One went in and came out as if on an assembly line ... one could see it is incredibly effective ... There was something rational about it, which I thought was a little ... well, it comforted me. I thought it was good because it indicated there wasn't anything that special about it. (Interviewee #10)
To Feel Involved
The participants valued the possibility to be involved, although they stated that their lack of experience of the examination made it somewhat difficult. One example of feeling involved was when they were asked if they preferred sedation, but due to uncertainty of what to expect, they made an agreement with the physician to start the procedure without sedation, and if needed, would get it later. Others actively chose not to have sedation due to logistic circumstances or due to unpleasant thoughts of losing control and/or consciousness. Another example of involvement was the possibility to follow the colonoscopy procedure by watching a monitor, which also could serve as a diversion. Moreover, to follow along on this inner journey was experienced by some participants as fascinating. Nonetheless, the direct visual impression was not always meaningful for the participants, as it sometimes counteracted involvement and made some of them feel insecure.
I can't explain it. It's more of a feeling of wanting to be taken care of ... in case something bad happened inside of me. It's like there's no way to absorb the shock, when you see it simultaneously ... I thought, “If they should discover something at the same time, they could take care of both it and me.” (Interviewee #22)
Unsedated participants experienced multidimensional sensations when they saw, heard, felt, and smelled their own colonoscopy procedure. For some, this was overwhelming, and they actively chose not to be involved and preferred not to watch the monitor.
I am rather squeamish, you know, [laugh] fear of hospitals, so I didn't want to look ... I can't look. It isn't the blood, it's the body's vulnerability that makes me a bit sensitive. (Interviewee #6)
To Experience Physical and Emotional Sensations
Once the participants entered the examination room, they had to place their trust in the healthcare professionals and focus on relaxation and feel reassured in the knowledge that the procedure was soon to be completed. The participants' descriptions of their experiences of physical and emotional sensations varied related to the colonoscopy. Some participants said that it was “nothing to talk about.” Others thought the experience had been reasonable, whereas others experienced it as dreadful. The participants often experienced a combination of discomfort and pain. Accordingly, the distinction between discomfort and pain was experienced as indeterminate and vague, which made it difficult for the participants to verbally express the experienced sensation during the colonoscopy. The discomfort was described by some participants as a weird bubbly feeling of something that crawled inside of them: an alien, a tapeworm, or possibly an eel.
Yes ... it was more, you know, there is some sort of pain that is ... it's not just that it hurts but rather it's more of an unpleasant sensation in your body ... It is also not like the kind of pain you experience when you hit yourself ... it's another type of ... experience. (Interviewee #20)
If the discomfort crossed over to pain, the participants described it as a narrow, metallic sensation, and women often compared it to severe period cramps. During peaks of pain, the participants experienced difficulties in breathing normally and sometimes shed tears. The experienced pain was either continuous or present in short intervals during the colonoscopy.
I mean, the second time, it hurt even more. You don't have the energy to scream, but you still want to scream, “STOP!” for real ... but, to be honest, the pain didn't last for long. It came in short intense bursts ... Yes, I would say that there were two times where it was really painful. (Interviewee #23)
There were some situations during the colonoscopy procedure that the participants highlighted as painful. They experienced pain if the physician had difficulty finding “the right way.” It was experienced as an unpleasant, searching, and path-finding process. Another painful situation was when the staff performed abdominal hand pressure to facilitate the intubation of the colon. If they had difficulties in evacuating gas, which had been insufflated to distend the colon, they experienced pain. When some of the participants experienced discomfort and pain, aside from sedation, they were aided by physical contact and instructions from the healthcare professionals to relax and breathe calmly.
During one episode, the pain felt stabbing ... and they asked me... what did they say? “Take a deep breath, tighten your stomach and breathe out ... relax ... and then they passed.” (Interviewee #2)
Some participants' memory was affected by sedation, and amnesia was clearly described, both during the colonoscopy procedure and afterward. The participants who described amnesia had not experienced it as unpleasant and said that they trusted the healthcare professionals' knowledge regarding this temporary memory loss.
The theme Finally over reflects feelings of relief, tiredness, and a desire for clarity. The experience served as a foundation for the participants' willingness to repeat the colonoscopy. The theme consists of three subthemes: To seek clarification, To recover emotionally and physically, and To gain a new experience.
To Seek Clarification
It was important for the participants to get some clarification regarding the symptoms that had caused them to undergo the colonoscopy procedure. If they had symptoms that could have been caused by cancer, they experienced relief if no cancer was detected.
He [the physician] said that the rectum was inflamed ... I guess that was calming to hear ... to know that it wasn't something worse ... to be honest, I don't know what it means but ... it seems like it could have been something more severe. (Interviewee #8)
In contrast, other participants experienced frustration if they had a normal colonoscopy and did not get answers to what had caused them their stomach trouble.
Unfortunately, they didn't find anything wrong ... I was hoping for some answers, because I still have problems, and you definitely want to know what has caused your problems rather than just hear ... “Sorry, we couldn't find anything”... and I told them, “What? What the f*ck is the problem? ... Something is giving me symptoms!” (Interviewee #2)
If the participants received a preliminary result on the examination day before discharge, they experienced a feeling of satisfaction regardless of whether the information was positive or negative. However, some participants went home with unanswered questions due to lack of knowledge or dizziness when they were given the information before discharge.
To Recover Emotionally and Physically
The completion of the colonoscopy relieved much of the mental tension and stress that some of the participants had experienced prior to and during the examination. Some participants also described tiredness because of lack of sleep and the subsequent sedative drugs. After arriving at home, it was common to take a nap on the sofa. The participants could feel cold, and they often experienced lack of energy and exhaustion due to hunger, and thus the first meal was described as delicious. Some participants experienced that their stomach growled and behaved slightly differently compared to normal: “I was a little bit bloated, a little bit sore ... It wasn't that bad after all ... I don't know. It felt strange. It bubbled (Interviewee #19).
If they felt bloated, they experienced an ease when they managed to evacuate it. Some of the participants defecated loose stool and had a sore feeling in their abdomen days after the procedure. Other participants did not experience anything out of the ordinary with their stomachs even though it took a few days before they had their first defecation. When the participants lacked information, they were unsure about what constituted a normal recovery and what to expect. In contrast, if they experienced that they were well informed, they felt calm and content.
They explained everything, [and] told me everything. They were very careful about everything. They prepared me ... so I knew that I could experience bleeding or fever, you never know ... they gave me a note ... if I needed to contact the emergency room, they should know what had been done ... that was really good. (Interviewee #11)
To Gain a New Experience
Afterward, some were pleased and happy to have completed the colonoscopy and they were often baffled by a feeling of “was that all?” Some even thought their anxiety prior to the procedure was ridiculous: “No, but really, they don't have to be afraid of anything ... They will be taken care of ... and it is for the sake of their health.” (Interviewee #9)
There were participants who experienced feelings of wanting to tell others that they should not be afraid because the whole colonoscopy process was done and over within a day. Regarding the willingness to repeat the colonoscopy procedure, some participants answered “yes” without a doubt, whereas some hesitated due to negative memories of the bowel preparation and experienced pain. Nevertheless, after a short negotiation with themselves, they concluded that if it were necessary to undergo the procedure again, they would, for the sake of their health.
The results uncover four themes that narrate how participants experienced the process of undergoing a colonoscopy. In the period before the colonoscopy, the first step was to make up one's mind about proceeding with the procedure. The hope of clarification regarding symptoms motivated them to go through with the colonoscopy. The participants experienced uncertainty about what to expect and made their decision by gathering information and reflecting emotionally. During the process of getting ready for the examination, they benefited from support from next of kin while struggling to follow the instructions and enduring the bowel preparation. When they were going through the colonoscopy, they stated that if their individual needs were met by the healthcare professionals, they experienced some relief, even though they were in an exposed situation during the procedure. When the colonoscopy was finally over, the participants needed to recover, but primarily, they wanted to get clarification regarding the symptoms that had caused them to undergo the procedure. Throughout the entire process, the participants' experiences were highly individual, demonstrating the importance of the healthcare professionals' ability to be responsive to each patient's needs.
When the participants were making up their minds about whether to undergo the colonoscopy or not, they searched for information from different sources, which helped in making their decision. They did this despite having received information from the healthcare provider. Information from the Internet and laypersons seemed to be unhelpful, as it often nurtured unrealistic negative expectations regarding the colonoscopy. This is in line with previous research found that these sources of information are often exaggerated and fear-inducing (Neilson et al., 2020). This shows why it is vital that the formal information from the healthcare provider is easy to understand and provided in different forms so that patients have the opportunity to be well informed, which is also suggested by Lee et al. (2019). Therefore, creating trustworthy information for those undergoing the process involved in a colonoscopy should be prioritized and then tested by patients who have previously experienced a colonoscopy procedure.
In several studies, anxiety has been associated with colonoscopy (Mikocka-Walus et al., 2012; Neilson et al., 2020; Rollbusch et al., 2014; Shafer et al., 2018; Yang et al., 2018). Importantly, based on the current findings, there are clearly more feelings involved than just anxiety. When sharing their emotional experiences, the participants mentioned anxiety but also feelings of fear and nervousness, which may be related to anxiety; but they also expressed feelings of hope—hope to get clarity about what caused their problems even if it would be a difficult message to receive, like that of a cancer diagnosis. They hoped it would be found in time thanks to the colonoscopy, which also gave rise to existential thoughts. Hope correlates positively to optimism, whereas emotional distress has been reported to have significantly negative associations with hope (Mahendran et al., 2016). Consequently, it is important for healthcare professionals to be aware that it is not solely anxiety but a diversity of arising feelings and experiences at play.
An adequate bowel preparation is essential for completion of an accurate and safe colonoscopy (Hassan et al., 2019). The participants wanted to follow the instructions properly regarding their bowel preparation process. However, if they experienced a lack of information or needed to confirm their understanding of it, they struggled with adherence, and this could have a negative effect of how they proceeded with the cleansing. A key aspect to successful bowel preparation is adherence to the instructions, and patient information interventions appear to improve the quality of bowel preparation (Guo et al., 2017; Hsueh et al., 2014; Kurlander et al., 2016; Liu, Zhang, Li, Li, & Li, 2017). As a result, one of the main recommendations according to the European guidelines is the use of enhanced instructions for bowel preparation (Hassan et al., 2019).
Some of the participants in our study expressed a need for information about the low-fiber diet. Neilson et al. (2020) reported that one patient in their study suggested that meal plans would be helpful during the preparations. The participants in the present study received written information in paper form. Presumably, information about bowel preparations, including what to eat, can be provided via smartphone applications. This information technology can effectively complement verbal and written information (Guo et al., 2019) and may improve adherence to instructions for bowel preparations (Desai et al., 2019). The current findings highlight a need for clearer information regarding bowel preparations. Therefore, one suggestion based on our findings is that healthcare providers develop such information grounded in both professional knowledge and patients' experiential knowledge. The result may be that patients adhere to the preparations properly, which in turn may lead to better prepared patients, and safer and less postponed colonoscopies due to inadequate cleansing. Such an effort would be resource-saving both for healthcare providers and patients.
When participants were going through the colonoscopy procedure, they described feelings of being exposed, referring to their physical and emotional vulnerability. In addition, they emphasized how beneficial it was for a positive experience that the healthcare professionals were responsive to their individual needs. When the healthcare professionals were responsive to the participants, the participants felt involved and respected. Patients have identified both healthcare professionals' attitude and being treated as an individual as important sources of comfort (Sewitch et al., 2013). Personal manner toward the patient is also a factor that has been associated with patient satisfaction (Ko, Zhang, Telford, & Enns, 2009; McEntire, Sahota, Hydes, & Trebble, 2013). Importantly, other studies have not specifically highlighted the aspect of experiencing involvement and the healthcare professionals' responsiveness, but in this study, it was prominent. It is clear that healthcare professionals need to embrace the patients' perspective and respond to their needs.
When the procedure was finally over, the wish for clarification was central. The desire for clarification highly motivated the participants to undergo the colonoscopy, which emphasizes the importance of providing results as soon as possible. However, amnesia was clearly experienced by participants who had sedation, suggesting retention of verbal information before discharge may be uncertain. Similar experiences of difficulties to remember information directly after discharge have been described by Hafeez et al. (2012), but positive experiences of receiving information shortly after the colonoscopy have also been described (Von Wagner et al., 2009) by patients who were sedated. Midazolam is known to cause drowsiness for up to one day (Lee et al., 2018). In the current study, some sedated participants experienced dizziness when they were given verbal information after the procedure. This is in line with findings from Hsu et al. (2015) that reported the seemingly recovered patients after midazolam sedation still had affected cognitive impairments. Consequently, the current study suggests that additional written information, or an opportunity to talk to, for example, a registered nurse the day after the colonoscopy, would be valuable for those who were sedated.
This study is limited to a single center and the experience of colonoscopy may differ according to other clinical routines at other units. Additionally, the findings cannot be transferred in general, as all the participants underwent the procedure only once. However, the results provide an in-depth understanding of how colonoscopy can be experienced. A strength of this study was the beneficial timing of the interviews because the participants spoke about their experiences freely and did not seem to have difficulties remembering the colonoscopy procedure. Furthermore, the sample varied regarding age, gender, and indication for the colonoscopy, which is a strength considering transferability (Lincoln & Guba, 2000).
Two of the authors (A.R. and E.T.) have a contextual understanding due to work experiences in Endoscopy Units. To minimize the risk for these preconceptions to subjectively interfere, all authors were involved in the formulation of the interview guide and data analysis. Moreover, throughout the analysis process, the findings were discussed by all authors multiple times until achieving agreement. Despite this, there is always a risk of subjectivity in data interpretation using qualitative analysis methods (Polit & Beck, 2016). To diminish this and to support trustworthiness, the analysis is thoroughly accounted for and the findings are supported with verbatim quotations from the interviews (Lincoln & Guba, 2000).
Although the participants in our study may have hesitated prior to their colonoscopy, they proceeded with the procedure in the hope that it would bring clarity regarding their symptoms. They experienced the colonoscopy as a process, and the time prior to the procedure was characterized by self-care, which should be carried out in an optimal way. The patients' exposed situation during the colonoscopy was eased by feeling involved and being respected. Furthermore, how healthcare professionals responded to the participants' needs was vital, as their experiences were highly individual. When the colonoscopy was over, mental relief and physical tiredness were followed by the desire to get clarification about their symptoms. It is indisputable and beneficial to provide adequate information that derives from both professional knowledge and patients' experiential knowledge. Finally, experiences of undergoing a colonoscopy are diverse, and these findings reveal a variegated image of the process. When this is acknowledged, a favorable patient experience can be facilitated.
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