Abstract
Background: Patients with Inflammatory Bowel Disease (IBD) undergo repeated colonoscopies to monitor their lifelong disease.
Objective: To describe experiences from repeated colonoscopies in patients with IBD.
Methods: Within a qualitative design 33 patients with IBD who had undergone at least three colonoscopies were interviewed by telephone. Hermeneutic interpretation served as the framework of the analysis.
Results: The colonoscopy procedure was explained as strenuous to undergo and interfered with daily life. It reminded patients of a lifelong disease, but the necessity of the colonoscopy, being life-saving, was highlighted. The colonoscopies entailed several unpredictable aspects – no control over pain, potential blame and unpredictable care. Shame, inferiority and uncertainty enhanced the feeling of being exposed and vulnerable.
Conclusion: Repeated colonoscopies can be perceived as both an assurance of life and a reminder of a lifelong illness. Healthcare professionals need to provide support in terms of awareness of patients’ vulnerability, despite extensive experience of the colonoscopy procedure. For example, person-centred care and continuity in care are potential interventions based on the results of this study. Another important aspect of care is to minimise interference in everyday life to prevent feelings of loss of the healthy self, for example by self-administrated outpatient booking systems.
Summarize the established knowledge on this subject. • Previous research in quality related to colonoscopy has mainly focused on technical and medical aspects. • Knowledge based on the patients’ perspective is rare and the few existing studies included mainly persons included in screening programs.
What are the significant and/or new findings of this study? • Patients with IBD undergoing repeated colonoscopies express specific needs in several aspects related to the colonoscopy procedure: • Continuity and a person-centered approach from healthcare professionals. • Support to cope with feelings of shame and inferiority as well as pain.
Introduction
Patients with Inflammatory Bowel Disease (IBD) undergo repeated colonoscopies to monitor their lifelong disease. With longstanding colitis there is an increased risk of developing colorectal cancer. Surveillance colonoscopy programmes have been developed in order to reduce the risk of morbidity and mortality of colorectal cancer [Citation1,Citation2]. For those with IBD, receiving healthcare treatment such as a colonoscopy examination may have a negative impact as a stigmatization of illness [Citation3]. Knowledge of the consequences of repeatedly undergoing colonoscopy is missing and the patients’ perspective is essential to gain an understanding.
In previous research, colonoscopy is described as a humiliating procedure, causing feelings of shame and embarrassment. Symptoms from the bowel, bowel disorder and colonoscopy are considered as private subjects that others may perceive as dirty [Citation4–7]. Many patients are anxious about the colonoscopy procedure. The most common sources of worry are pain and the outcome of the examination. Worry enhances the risk of experiencing more severe pain and discomfort, which seems to be more pronounced in women [Citation4,Citation8–10]. Furthermore, patients who have previously undergone painful examinations, experience more worry related to pain and are also more likely to experience more severe pain [Citation9–12].
Important factors for patient satisfaction regarding colonoscopy is to feel safe, receive care with dignity, respect and with a personal approach [Citation13–16]. Previous research has shown that patients with experience of several colonoscopies particularly value the interaction, continuity, and the technical skill of the physician more than for example, patients admitted for a screening colonoscopy [Citation8,Citation13–16]. Clear and concise information before and during the colonoscopy have important and positive effects on worries and pain before and during the procedure [Citation15–17]. Waiting time and the surrounding environment during the visit are also factors of importance for satisfaction with the colonoscopy [Citation14,Citation18].
The preparations, including bowel cleansing, can be uncomfortable and have an effect on the patient’s experience of the colonoscopy procedure. Laxatives are necessary before a colonoscopy and can cause abdominal pain, nausea, vomiting, fullness, and anal irritation [Citation4,Citation5,Citation8,Citation19]. Patients with IBD report more inconvenience from laxatives compared with other patient groups undergoing colonoscopy [Citation8].
Previous research regarding colonoscopy has mainly focused on technical and medical quality [Citation20]. In addition to this technical and medical quality, it is equally important to enhance knowledge focusing on experiences in conjunction with colonoscopy. A substantial number of patients with IBD undergo repeated colonoscopies during their lifetime. However, knowledge based on patients’ narratives of what it means to repeatedly undergo colonoscopy is missing. The patients’ perspective is essential in order to gain a broader understanding to develop support and management before, during and after the colonoscopy. Therefore, the objective of this study was to gain knowledge by describing patients’ experiences of repeated colonoscopies.
Methods
Design and study participants
To describe patients’ experiences of undergoing repeated colonoscopies, a qualitative methodology was chosen within a cross-sectional design. Patients’ narrative of lived experiences of multiple colonoscopies formed the basis for a deeper understanding. Inclusion criteria comprised Swedish-speaking patients with IBD above the age of 18 years, who had undergone at least three colonoscopies previously. Exclusion criteria comprised impaired cognitive ability that hindered comprehension of the purpose of the study. In total, 42 patients were identified as eligible for inclusion and 33 patients were included (). Demographics and clinical data are presented in .
Figure 1. Enrolment in the study between April 2015 and November 2016. Included patients were approached with information about the interviews by letter (n = 25), at the clinic (n = 10) or by telephone (n = 7).
Table 1. Clinical characteristics and demographic of included patients (n = 33).
Data collection
Data were collected through semi-structured telephone interviews between April 2015 and November 2016. We aimed to include respondents representing a variation in age and gender from a register of a previous cross-sectional study at an endoscopy unit in a Swedish university hospital. The 33 patients who agreed to participate were given information regarding the aim of the study. The interviews were performed by one researcher (JR) and varied between 6 and 34 min (average 15 min). An interview guide was used with questions to stimulate the narratives of the experience of undergoing colonoscopy. The interviews were recorded and transcribed verbatim. The study was performed in line with approval by the ethical review board in Gothenburg 2014-02-27 (ref: 102-14), in accordance with the Declaration of Helsinki [Citation21]. Informed written consent was obtained from all participants.
Analysis of the narratives
Three researchers analysed the interviews (JR, SJ, and GR) according to a four-step model in line with Gadamer’s interpretation analysis. To understand the emotional reactions and the experiences a hermeneutic methodology was chosen [Citation22]. All interviews were read and listened to repeatedly to find expressions and reflections that were verbalized. Secondly, a more detailed analysis was made to further understand the meaning of what was discussed and preliminary themes and subthemes were formed. In the third step, themes and subthemes were further developed and recurrently considered through discussions focusing on the meaning that was identified and the preunderstanding of the themes. The understanding developed when repeatedly listening to and reading all interviews. The last step included identification of parts of the interviews (quotations) to visualize final themes and subthemes.
Results
The analysis resulted in three themes divided into different subthemes. The themes and subthemes visualize similarities and differences in undergoing repeated colonoscopies over time from the patients’ perspective. Quotations given as examples to describe the themes are presented in .
Table 2. Example quotations from interviews to clarify themes and subthemes.
Strenuous and life-saving
Necessary and interfering with everyday life
Colonoscopy was regarded as a necessary examination but one that interfered with everyday life. With fears of developing cancer, colonoscopy became a life necessity and something that had to be tolerated, including pain, discomfort, feelings of inferiority and the strenuous bowel preparation. Being enrolled in the surveillance programme elicited feelings of gratefulness and was viewed with confidence and as a life-saving approach when living with a lifelong illness. The examination was described as an opportunity to detect cancer in an early stage and some seemed to be convinced that cancer was likely to appear.
Colonoscopy was also regarded as a routine control and compared with a dental appointment without any specific distress. Patients who felt healthy at the time of the colonoscopy were reminded of their lifelong condition. Feeling healthy and being forced to go through the strenuous bowel preparation made the colonoscopy difficult to include in everyday life. Bowel preparations were described with disgust and contributed to uncontrolled frequent diarrhoea, strenuous toilet visits, abdominal pain, sleep deprivation, nausea, vomiting, and exhausting. Being forced to modify diet and take time off from work and leisure also interfered with everyday life. The time after the colonoscopy could be strained by fatigue and pain. It was difficult to get used to undergoing colonoscopy despite many years of experience of the procedure.
Experience and control
Positive experiences from previous colonoscopies contributed to well-functioning strategies, which led to feelings of safety and of being in control. In order to manage the colonoscopy procedure, patients developed several strategies for example, to prepare in a methodical way, to follow the same procedure every time and/or have the correct beverages at home. Support from a significant other or an ambition to have a positive and strong mental attitude were also commonly described strategies. Another strategy, which enhanced control and participation during the colonoscopy, was to follow the colonoscopy procedure on the screen and to minimize the quantity of sedating drugs. Technical improvements, for example development of the colonoscope, were factors that contributed to increased tolerance for undergoing the colonoscopy. To gain control over the course of the disease and treatments, some took notes or recorded the information provided after the colonoscopy. Delays in the surveillance colonoscopy programme caused concerns and feelings of loss of control over the course of the disease. There was a general wish to receive a summary of the outcome after the colonoscopy and repeated information was valued. Experiences concerning lack of time, deficient or missing information or not remembering the information were common.
Exposed and vulnerable
Shame
The colonoscopy contributed to lack of control of emotional and physical functions before and during the procedure, which increased feelings of shame and embarrassment. Not being in control of bodily functions and being in a strained emotional state created a need for support. Being dependent on others could be perceived negatively. The insertion of the instrument caused the body to react with anxiety, fear, or nervousness despite previous experiences and a conscious desire to undergo the colonoscopy. Exposing the lower part of the body and the inability to conceal the body in the presence of people passing or observing in the examination room further increased vulnerability and feelings of shame. Colonoscopy was considered as private, and not something the patients wanted to discuss with others. Some tried to use humour to minimize feelings of shame. Feelings of loneliness, both in relation to enduring the strenuous procedure, and from living with a lifelong condition were expressed.
Inferiority
Bowel preparation caused exhaustion through lack of sleep and energy. This hindered the ability to be strong in the stressful situation, which contributed to feelings of inferiority. A feeling of being restrained by the colonoscope within the body worsened the situation. Sedation and analgesic drugs alleviated pain and worry, but the drugs also exaggerated weakness and difficulties remaining alert. The drugs also contributed to amnesia and some did not remember the result of the colonoscopy. The drugs, as well as the inability to be strong, impaired the ability to be involved and in control of the situation.
Uncertainty
Patients expressed feeling nervous and uncertain before the colonoscopy even if they had undergone colonoscopy many times before. An important factor in such concern was not being aware of who would perform the colonoscopy. A prolonged procedure, failure to get the bowel sufficiently clean or eventual findings during the colonoscopy, such as active inflammation or cancer, were other issues of concern. Previous experiences of an insufficiently cleaned colon were associated with shame and fear of undergoing the exhausting preparation with laxatives again.
Unpredictable
Respect and disrespect
A welcoming attitude at the unit was important and seemed to have improved over time. The healthcare professionals were described as supportive, calm and to provide a sense of security. To be recognized contributed to confidence and perceived increased participation in care. Care based on personal wishes was important for satisfaction and positively influenced the interaction. Patients who described limitations in continuity by not meeting the same endoscopist expressed a desire for a change. Interactions such as general chitchat, as well as being guided and receiving explanations, despite experience of several colonoscopies, were perceived as positive. A responsive endoscopist eased the experience even though the examination was hard to handle. Patients often expressed an understanding and a confidence that everything was done to improve their situation during the colonoscopy. Some described the physician as hard to interact with, while the nurse was described as a communicator and being perceptive to the patients’ needs. The support of a nurse was valued as a provider of feedback, visibility and deflecting discomfort and pain. The examination was negatively perceived if the nurse did not appear to be present in the moment, either physically or emotionally.
Previous experiences of disrespect and ignorance caused a fear that the colonoscopy would be conducted by a rough, impersonal endoscopist without any interaction. Feelings of being treated like a machine, a disease or a piece of meat were expressed. Being addressed like a child, by being spoken to in a patronizing way, influenced the situation negatively. Narratives were recounted involving distrust from healthcare professionals when the patients described their symptoms. Negative experiences influenced the patient’s attitude negatively both in terms of undergoing colonoscopy and of the overall healthcare system. Further, it affected adherence to the colonoscopy procedure and could delay seeking medical care.
Blame
Patients were highly perceptive to healthcare professionals’ reactions and often felt uncomfortable if the endoscopist in any way described the examination as being complicated. When colonoscopies were interrupted due to uncontrolled pain or if the endoscopist was unable to complete the examination, the patients often blamed themselves. In some narratives patients were accused of being the cause of an interrupted examination.
Pain
Pain was expressed as mild or manageable as it occurred in short episodes, but also as uncontrolled and very intense. The need for pain relief was affected by the patient’s general condition and the support and confirmation given by the healthcare professionals. Physical contact during the colonoscopy relieved pain and promoted confidence. Previous painful examinations and insufficient pain relief could contribute to worries and fears about future colonoscopies. The examination could be tolerated by obtaining adequate medication. Distrust from healthcare professionals regarding accuracy of severity of pain was described. Colonoscopy seemed to be more painful for younger patients and if the bowel was inflamed. Insufflation of large volumes of air into the bowel could increase pain and a gentle pace in difficult passages could ease pain. Feelings of illness and undergoing several treatments, contributed to pain and feelings of powerlessness.
Discussion
The results demonstrate important aspects of patients’ experiences of repeated colonoscopies that have not been described in previous studies. The experiencing of colonoscopy as strenuous, unpredictable and, causing a feeling of vulnerability, while also being life-saving, describes the complexity of having IBD and undergoing repeated colonoscopies.
In the present study, colonoscopy was described as a reminder of lifelong illness. Our results confirm previous findings that repeated colonoscopies within a surveillance programme can be understood as life-saving but also as a contributor of fear related to earlier experiences [Citation4,Citation8–10]. This study also demonstrates and even more highlights other issues in a broader perspective such as; the vulnerability when living with a lifelong disease and to depend on unpredictable, necessary and uncomfortable care. Negative experiences for body and mind contributed to lack of emotional and physical control as described in the theory of embodiment [Citation23], which can serve as a way of understanding our results. Intellectually, the patients were aware of the importance of the colonoscopy, but the minded body reacted with unwillingness before and during the procedure. Those who have experienced previous painful colonoscopies have more worries about pain and are more likely to experience more severe pain during the examination [Citation8–10].
The unpredictability of IBD-symptoms causes both physical and psychosocial challenges. The embarrassing symptoms, concerns and negative impact from medical treatment can reduce the patient’s quality of life [Citation24–26]. In the present study some patients expressed being tired of the burden of their disease. This is in line with aspects of living with lifelong conditions, such as IBD, which may cause loss of their healthy self and a limited access to life [Citation7,Citation24–28].
Our findings highlight the importance of being aware of patients’ feeling of inferiority not only in relation to their lifelong condition but also being dependent on health care and being vulnerable during the colonoscopy procedure. The examination includes insertion of the colonoscope through the anus, which was expressed as shameful, as was the inability to conceal both the inside and outside of the body. As described in the present study, the effects of bowel preparation and sedative drugs are factors causing feelings of inferiority. Altogether, these aspects of the colonoscopy procedure should be considered as important as the pain and laxatives described in other studies [Citation6,Citation8,Citation10].
Increased respect from healthcare professionals over time was reported in this study. However, our results indicate a need for healthcare professionals to become more responsive to the patient’s personal preferences and need for privacy to avoid feelings of disrespect. Based on our results, establishing an environment that enhances privacy by limiting the number of surrounding people is an intervention that could be implemented immediately. A newly published paper further addresses other factors in the care environment that can enhance the experience during the colonoscopy procedure [Citation18].
Several aspects of unpredictability were found, such as not knowing who will perform the colonoscopy, pain and distress, insufficient bowel preparation, and what might be detected. These aspects, as well as previous studies on the importance of information [Citation4,Citation13–17,Citation19,Citation29], imply a need for involving the patient in discussions before and after the colonoscopy. Acknowledging the issues of unpredictability and uncertainty could possibly prevent patients from feeling blame in terms of how the examination turned out.
During the interviews patients frequently discussed taste sensations and symptoms related to bowel preparation. The possibility of choosing laxatives was important and influenced the willingness to undergo the colonoscopy. It was obvious that this topic was of great importance and influenced the attitude to colonoscopy, and has been reported extensively [Citation5,Citation6,Citation8,Citation19]. However, this focus during the interviews on bowel preparation can also be interpreted as an escape to avoid talking about colonoscopy causing shame and distress.
The study design was chosen to gain an understanding of patients’ experiences based on their narratives. It included extensive patient experiences and the variety in age and gender contributed to rich descriptions of repeated colonoscopies. Telephone interviews were chosen to be more convenient for the patients, but might be a weakness of the study, as it is not possible to interpret the patient’s body language. Notes after each interview and repeatedly listening to the interviews during analysis were used to compensate for the missed face-to-face interactions. A nurse working in the endoscopy unit performed the interviews, which could negatively impact the patients’ freedom of speech. However, we considered that performing the interviews with a highly experienced nurse from the unit was more of a benefit than a limitation and did not negatively affect the patient’s response. We think that the experienced nurse contributed to a high level of confidence, which resulted in a rich dataset. A variety of experience and preunderstanding on the part of the researchers created a wide interpretation, which enhances the trustworthiness of the results of the study [Citation30].
Conclusion
Repeated colonoscopies can be perceived as both an assurance of life and as a reminder of a lifelong illness. Healthcare professionals need to provide support in terms of awareness of patients’ vulnerability, despite extensive experience of the colonoscopy procedure. For example, person-centred care and continuity in care are potential interventions based on the results of this study. Another important aspect of care is to minimize the interference in everyday life to prevent feelings of loss of the healthy self for example by providing self-administrated outpatient booking systems.
Ethical statement
The ethical review board in Gothenburg approved the study 2014-02-27 (ref: 102-14). Written, informed consent was obtained from each patient. The study protocol conforms to the ethical guidelines of the 1975 Declaration of Helsinki as reflected in a prior approval by the institution’s human research committee.
Author contributions
All authors contributed to the design of the study. JR, GR and SJ analysed and interpreted the data. JR drafted the article and GR, MS, POS and SJ revised it critically. All authors approved the final version of the manuscript ahead of publication.
Disclosure statement
No potential conflict of interest was reported by the authors.
Correction Statement
This article has been republished with minor changes. These changes do not impact the academic content of the article.
Additional information
Funding
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