Maintaining work life under threat of symptoms: a grounded theory study ... - BMC Gastroenterology .

Focused Coding

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Participants

Fifteen women and eight men with IBS were included and all participants fulfilled the Rome III criteria for IBS (Table 1) [28]. The majority of participants reported moderate and severe IBS symptoms according to Irritable Bowel Syndrome Severity Scoring System [29]. More than half of the participants reported severe general fatigue [31]. Most participants reported no depression, while anxiety was more prominent with 56 percent reporting possible or probable anxiety according to validated cut-off levels on the Hospital Anxiety and Depression scale [30]. Five participants reported high school and 18 participants reported university as their highest level of education. Most participants worked full-time, about a fourth worked part-time and three participants were on sick leave. The work situation at the time of data collection is shown in Table 2.

Table 1 Selected demographics, IBS characteristics and reported symptoms at the time of the interview
Table 2 Job characteristics at the time of the interview

Balancing work life while being under threat of symptoms

Balancing work life while being under threat of symptoms formed the core category in this study. The processes of balancing work life comprised of being prepared, restricting impact, reconciling, and adjusting. All these processes revolved around being under threat of symptoms visualized in Fig. 1. Being prepared, restricting impact, and reconciling, were interpreted as being dependent on oneself. Persons with IBS use strategies and routines and exert different forms of control to be prepared and restrict impact of IBS on work. Reconciliation of work and IBS was understood as a successful outcome from being prepared and restricting impact, and was influenced by outlook on life. In reconciliation, the impact of IBS on work was described as decreased, the symptoms were perceived as less frequent, less intense and/or not as bothersome. In contrast, adjusting to others and thereby not being able to take full advantage of being prepared and restricting impact leads to additional challenges in work life and a greater impact from being under the threat of symptoms. In Table 3, categories are exemplified with quotes from the interviews.

Fig. 1
figure 1

The process of maintaining work life living with irritable bowel syndrome

Table 3 Quotes from the interviews regarding the process of maintaining work life living with irritable bowel syndrome

Being under threat of symptoms

The unpredictable characters of symptoms affected work life. The respondents spend a lot of time being perceptive to their gut, thinking and worrying about present symptoms and possible worsening of symptoms. Symptoms from the GI tract and fatigue were specific symptoms, which were described as interfering with work life. GI symptoms delayed arriving in time in the mornings and disrupted and hindered work tasks during the day due to urgent need to visit the toilet. For many, the GI symptoms could flare up, which led to a period with intense symptoms from their IBS. During these periods, which could vary from one day to weeks, working was almost impossible. Fatigue was described by many as impacting work life more than GI symptoms. Multiple aspects of work were affected by mental and/or physical fatigue, making it harder to concentrate and affecting the pace of work and could even make full-time work impossible. Respondents also described co-occurrence of fatigue and pain, where pain could lead to fatigue, requiring rest, and depending on severity, a need to stay home from work. Stress from having symptoms, as well as stress originating from work life led to more symptoms. The stress did not always trigger symptoms but could intensify already occurring symptoms. Experiencing anxiety could trigger symptoms.

Being prepared

Being prepared was understood as strategies to prevent or decrease symptom burden at work. Being prepared was done by controlling and/or adapting different aspects of work life. However, controlling work life did not always mean having control as other parts of life interfered. Moreover, not having a permanent employment could reduce the possibility of having control in work life.

One strategy of being prepared was the possibility to control work time and work hours; be able to choose to work part-time, take advantage of flexible hours, and have the freedom to schedule time at work yourself. The possibility to control time by arriving to work later and staying longer or arrive earlier another day could prevent an entire day of sick leave due to symptoms. Controlling time when being at work involved scheduling meetings and trips at times when the symptom burden was not too severe. Work life took a lot of energy, and to work part-time was described as a way of preserving energy for private life. To vary work tasks gave the respondents an opportunity to choose suitable tasks in relation to symptoms. Having the option to work on your own, with tasks that could be left at any time was useful at times when experiencing GI symptoms. Work tasks that had critical steps that could not be interrupted and tasks with higher demands was chosen when GI symptoms were absent. Being able to control the place of work, from home, at the office or outside, was described as another way of being prepared and thereby being able to prevent or decrease the symptom burden. The possibility to work from home, and having access to a toilet, could allow respondents to work despite having GI symptoms. Controlling the place of work also included being aware of where the nearest toilet is when choosing workstation and planning toilet breaks during work hours.

Being prepared also involved choosing occupations and careers that were compatible with IBS. This took the following expressions: reservations in choosing professions that demands working close to others, pursuing work that allows you to maintain routines, or hesitating to seek jobs out of fear of not having the energy to take on a new professional role.

Restricting impact

Restricting impact of IBS on work life was interpreted as an ongoing process involving practical strategies that took up a lot of time and thought. Strategies involved maintaining routines that helped to reduce the symptom burden or restrict the impact of them. Not being able to uphold strategies and routines was described as stressful, which was especially difficult to do when traveling was part of your work.

Controlling food intake during work hours was prominent. Respondents brought food from home for lunch, choose to buy food at lunch restaurants that was compatible with their dietary choices or restricted the amount of food they ate when at work. Choosing safe food when traveling as part of work, both during and outside of work hours, was also described as a strategy. Apart from strategies concerning food intake, strategies and routines around physical activity, relaxation and preparation was evident. By listening to relaxation tapes, using strategies learnt from hypnotherapy and using breathing exercises stressful work situations could be relieved. Respondents also used these strategies, as well as yoga and prayer, in their spare time in order to reduce impact of stress on overall life. Physical activity was used to control GI symptoms. Exercising regularly and avoiding long periods of sedentary work tasks was considered important. Having the opportunity to stand up and work was considered positive.

Respondents restricted impact by preparing for work by using routines in relation to their gut. This was done by waking up early and having plenty of time for bowel movements, not drinking coffee before arriving at work or packing extra underwear and toilet paper or tissues to have close by in case of an GI-related accident. Another way to restrict impact of IBS was to seek support from others at work. Colleagues and/or the employer could be a source of support in providing an opportunity to share experiences of illness. Asking colleagues for support could ease the work situation, increase productivity, and job satisfaction. However, all respondents did not get support from colleagues and some felt monitored when for example visiting the toilet. In some cases, loneliness was described, since others did not understand what living with IBS entailed and respondents feared reactions from colleagues noticing them passing gas or thinking of them as being lazy. On the other hand, restricting impact of IBS on work could also result in choosing solitude. Having an office of your own, with the possibility to close the door and to be alone was of importance for some. Choosing solitude had the benefit of making work feel more efficient. Further, when experiencing symptoms such as pain, it was easier to be able to continue to work on your own and not having to interact with other people. Working on your own was also something that was described as positive regarding being able to go to the toilet without colleagues noticing this.

Reconciling

Reconciliation of work life and IBS occurred on different levels. One more superficial level was when being prepared and restricting impact worked well and the threat of symptoms lessened at work. Another, more profound level, comprised a basic positive outlook on life and work life, which was described as important to lessen the burden of IBS at work. Having a general positive outlook on life was an aspect of reconciling, which helped some to uphold their work life. For example, having to eat often created natural, much needed, minibreaks from work. Seeing one’s abdomen as part of a whole, with body, mind, and spirit, and focusing on what that whole is capable of at work, helped coming to terms with IBS. Some compared their situation to others, who had other or worse IBS symptoms and could find feelings of gratefulness over their own situation.

Expanding knowledge of IBS was a lifelong endeavor and included learning to listen to the gut and finding strategies that could help reconcile IBS and work life. Expanding knowledge was done by a combination of listening to the gut, searching for information and trial-and-error. For example, respondents could over time learn to recognize different types of pain, making a familiar pain less frightening based on previous experiences. Finding strategies was something respondents had to do on their own, since many respondents felt they had not received any help from health care professionals. However, multidisciplinary group education and hypnotherapy given at a specialist clinic were brought forward as being helpful.

Several respondents chose not to be hindered by their IBS, chose not to surrender to it, or expressed that they decided to not be ashamed of living and working with IBS. Since the illness was not their choice, they did not see it as their fault if they now and then struggled with work tasks, which could be compensated for when the symptom burden was less severe. Some of the respondents reported having been brought up not to make a fuss and therefore had learnt to endure when experiencing symptoms at work. Because of this they were not that affected by IBS at work anymore, which resulted in no need to tell colleagues about their IBS. Closely related to not surrendering was coming to terms with the IBS diagnosis and accepting the situation after having had IBS for many years. When the respondent liked their work, and felt that they were doing something important, that could be chosen over a job that was more compatible with IBS symptoms. This was done because the job satisfaction was highly valued and outweighed the potential benefit of decreased severity of IBS symptoms. This also gave strength to work through symptoms.

The workplace was sometimes seen as a safe haven. Working reduced the impact of IBS by diverting attention from the gut. Having access to a resting room gave a sense of safety and could reduce symptoms, even if seldom using it. Not being subjected to the same expectations when it came to looks and appearance at work as in social life was seen as something positive. Depending on workplace, wearing functional work clothes, that was more comfortable for the abdomen than regular clothes, could be preferred.

Adjusting

Adjusting and relating to others was often described as being negative. When adjusting, respondents could not fully take advantage of being prepared and restricting impact. The threat of symptoms was magnified, and symptoms broke through more often impacting the work situation. Having to adjust to colleagues could mean not being able to choose work tasks that were suitable for the gut or eating food that was not good for them. It was often seen as stressful to work close to colleagues, which could worsen IBS symptoms. Sharing a room or working close to colleagues also caused symptoms directly, e.g., having long meetings and not being able to pass gas could lead to abdominal pain. Some noticed that they had less severe IBS symptoms when they were off work since they did not have to adjust to others and some reported that symptoms decreased when they simply stopped adjusting to others at work.

To relate to others emotionally as part of specific work tasks was also something that made respondents more exposed to IBS symptoms. Working towards another person, e.g., in social work, with high demands on being attentive and empathic, took a lot of mental energy and left respondents more vulnerable to symptoms. This did not only apply to social work, but also working with patients, clients, and some costumers. Some participants reported experiencing ethical stress in their work, which was described as an additional factor causing stress. Respondents who did not have close contact with other people as part of their work tasks expressed that they preferred to work when experiencing distressful symptoms as adjusting and relating to other people also applied to family life.