Participant characteristics
Seventeen semi-structured interviews were conducted. The participants included 6 women and 11 men, with an age range of 32–59 years (average: 45.6 years). Table 2 shows the sociodemographic and clinical characteristics of the participants.
Table 2 Sociodemographic and clinical characteristics of the participants
No.
|
Gender
|
Age (years)
|
Education level
|
Marital status
|
Occupation at the time of diagnosis
|
Diagnosis
|
Types and properties of stoma
|
1
|
Female
|
39
|
Junior middle school
|
Married
|
Office staff
|
Rectal cancer
|
permanent
colostomy
|
2
|
Male
|
47
|
Junior middle school
|
Married
|
Self‐employed
|
Rectal cancer
|
Temporary
ileostomy
|
3
|
Male
|
50
|
Primary school
|
Married
|
Workers
|
Colon cancer
|
Temporary
ileostomy
|
4
|
Female
|
36
|
Junior middle school
|
Married
|
Workers
|
Rectal cancer
|
Temporary
ileostomy
|
5
|
Male
|
49
|
High school
|
Married
|
Administrative staff
|
Rectal cancer
|
Temporary
ileostomy
|
6
|
Male
|
42
|
Junior middle school
|
Married
|
Driver
|
Carcinoma of sigmoid
|
Temporary
ileostomy
|
7
|
Female
|
43
|
Primary school
|
Divorced
|
Hotel attendant
|
Rectal cancer
|
Temporary
ileostomy
|
8
|
Female
|
32
|
Junior middle school
|
Married
|
Workers
|
Rectal cancer
|
permanent
colostomy
|
9
|
Male
|
34
|
Junior college
|
Married
|
Airport security
|
Rectal cancer
|
Temporary
ileostomy
|
10
|
Male
|
43
|
High school
|
Married
|
Driver
|
Colon cancer
|
Temporary
ileostomy
|
11
|
Female
|
48
|
High school
|
Married
|
Administrative staff
|
Rectal cancer
|
Temporary
ileostomy
|
12
|
Male
|
48
|
Junior middle school
|
Married
|
Self‐employed
|
Rectal cancer
|
Temporary
ileostomy
|
13
|
Male
|
46
|
High school
|
Married
|
Chef
|
Rectal cancer
|
Temporary
ileostomy
|
14
|
Male
|
51
|
Primary school
|
Married
|
Workers
|
Rectal cancer
|
Temporary
ileostomy
|
15
|
Male
|
59
|
Junior middle school
|
Married
|
Logistics manager
|
Colon cancer
|
Temporary
ileostomy
|
16
|
Male
|
56
|
Technical secondary school
|
Married
|
Office staff
|
Rectum adenocarcino-ma
|
Temporary
ileostomy
|
17
|
Female
|
52
|
Primary school
|
Married
|
Workers
|
Colon cancer
|
Temporary
ileostomy
|
Three major themes emerged from our data analysis. These themes and the associated subthemes are described in the following sections. The framework diagram of the results (Figure 1) was obtained based on the three dimensions of the RRTW model and the research results, and illustrative quotes are provided in Table 3.
Theme 1: self-efficacy
Irrational cognition of CRC and stoma
Regarding CRC and stoma, most patients responded that they had never developed such disease earlier and that they were only aware of the name of the disease as CRC; however, they had no knowledge regarding the cause of CRC and the reason why surgery is required for enterostomy. During disease recovery, some patients began to take more interest in their role and started focusing more on their recovery.
Ability to interact socially was reduced
Objective disease factors lead to a reduced social interaction
The decrease in patients’ social interaction is partly caused by objective factors. The physical function and physical strength of the patients are affected to a certain extent during the recovery period after the surgery. Because of the treatment approach, some patients need to carry drainage tubes even after discharge and require continuous chemotherapy, which causes them inconvenience while performing their daily activities. The patients believe that it is not suitable to venture outside during recuperation; consequently, the scope of social activities is narrowed down between families and relatives, which is not favorable to restore interpersonal relations after returning to society. For some patients, social relationships were mainly restricted to their work colleagues before they underwent surgery; however, after surgery, they were largely divorced from their social relationships.
A subjective strong sense of stigma leads to the refusal to socialize
On the subjective level, although enterostomy saved the lives of the patients to some extent, it completely altered their perception of natural excretion. The patients found it difficult to accept that the stoma existed on the abdominal wall. Therefore, most of the patients we interviewed had varying degrees of shame, and they were more resistant to social interaction. During the stoma-carrying period, most patients experienced very negative psychological feelings about communicating with other people, and they even took the initiative to refuse to communicate with people other than their families. Some patients admitted that their nature had gradually become worse, their mood was easily affected, and they became impatient. Their cognition of the stoma also reflects the group values of their social circle, and it was observed that the acceptance of the stoma by their friends was also relatively conservative and generally on the low side.
The level of stoma-related self-efficacy was polarized
Active thinking to solve the problem of stoma care
Some patients had a positive attitude toward nursing of their stoma. They were willing to actively learn the relevant knowledge and participate in and undertake the nursing activity for their stoma; they even conducted some work, such as pocket replacement, independently or with assistance of their families. They exhibited strong confidence in stoma self-care. These patients were good in thinking and summing up their nursing experience. They actively managed issues such as fluid leakage and dermatitis in stoma to effectively reduce the occurrence of stoma-related complications.
Evading the responsibility of self-care and relying entirely on family care
Some patients lacked confidence to take adequate care of their stoma and relied entirely on the help of their families. Some patients thought that the position of stoma leads to a certain degree of difficulty in nursing and that it is not easy to perform nursing care. Other patients believed that their stoma is temporary, and they were eagerly waiting for it to be placed back into the abdominal cavity 3–6 months later; hence, they thought that their family members should take care of the stoma during this short period of time, and it is not necessary for them to master nursing skills.
Theme 2: Decision balance
Motivation to RTW
Working can promote physical and mental health and realize one’s self-worth
Some patients thought that RTW can be regarded as exercise for themselves, which can not only alleviate their boring life at home for a long time but also help to recover from the disease and promote physical and mental health. Moreover, some patients not only liked their careers but also had strong professional ethics. They believed that the stoma will not prevent them from realizing their self-worth at work.
Economic needs
Because of illness, surgery, and other reasons, the financial situation of most patients’ families had declined to a certain extent, and economic pressure prompted them to take the decision to RTW. In particular, male patients and single mother patients felt that RTW was inevitable to restore the main source of income of the family.
Robust social-family-workplace support system
A tolerant social environment, adequate family support, and good understanding of work-related colleagues had a positive impact on the patients’ willingness to RTW. Most patients responded that they received good care from their families and financial support and care from their friends and work-related colleagues during their illness. The nature of the work of the participants also had an impact on their willingness to RTW.
Difficulties in RTW
Inconvenience while dressing and poor image
Because the stoma is located in the abdominal wall, some patients thought that this awkward position made it very inconvenient for them to dress properly for the occasion. Because of their nature of work, some patients were required to wear uniforms with belts during work; this was a difficult issue for patients with stoma. They felt that they have to abandon wearing tight clothes because it will suppress the stoma and cause discomfort; this was especially problematic and restrictive for women who liked to wear such clothes to appear beautiful.
Decrease in physical function
Long-term illness, surgery, and chemotherapy had affected the physical function and psychology of the patients. Most patients showed physical weakness, decreased resistance, memory loss, etc. Moreover, after the surgery, it was difficult for the patients to meet the work requirements in terms of work intensity and working hours, which they could manage before the illness. Therefore, they first wanted to wait at home to recover from their illness and then consider whether to RTW.
Problems of stoma such as continuous excretion and odor
Undoubtedly, stoma and defecation are a great physical and psychological challenge for patients. In particular, most temporary stoma cannot store feces; consequently, stoma excretion will be continuous or irregular. The patients need to frequently visit the toilet and perform timely cleaning; otherwise, feces accumulation would easily lead to stoma leakage and odor. This not only makes it very inconvenient for patients to move and work but also places high psychological pressure on them while interacting socially with others. Consequently, the stoma problem may prevent them from RTW.
Decision-making to RTW
Looking forward to RTW and plan to overcome the difficulties
Although the stoma had some negative effects on the patients’ quality of life, such as inconvenience during daily activity, dressing restriction, and nursing difficulties, some patients maintained an optimistic and positive attitude toward the stoma. They believed that the effects of CRC can be overcome and the issue can be resolved, and they were awaiting RTW.
Negative response and abandon the thought of RTW decisively
While deciding whether to RTW, half of the patients chose to abandon the thought decisively. Most of them refused to rework because of the existence of stoma. They insisted that they will reconsider this decision after the stoma has been placed back and they have fully recovered from the disease.
Theme 3: Change process
Experience Change
Change the social interaction
A small number of patients slowly began to re-contact people they were familiar with, while showing an evasive attitude toward contact with strangers, unless they choose to communicate offline to avoid possible embarrassing situations.
Plan to adjust work intensity or work type
Some participants responded that easy work is also a good option to return to society. If they RTW, they may plan to change their jobs or adjust their work frequency, duration, and intensity to best suit their health.
Regain a new life and feel life
Almost all the participants re-examined their lives after suffering from the disease and felt that they gained new life and new insights regarding life. They now believed that life is most precious and decided to relax themselves and avoid getting trapped by the opinions of others. They gained confidence to overcome the disease and actively cooperated with the treatment regimen. They were also very grateful for the love of their family and friends and decided to cherish their lives as a reward.
Behavior change
Pay careful attention to the situation of stoma and timely nursing
Some patients undertook some measures to prevent stoma-related issues to overcome the difficulties that may arise when they RTW, such as slowing down the speed of their activities, making preparations before going out, carrying stoma care materials, and paying attention to and changing stoma feces in time.
Increase exercise and nutrition as well as strengthen physical and mental rehabilitation
To promote physical recovery and RTW as soon as possible, some patients made changes in their nutrition and exercise. They began to increase their nutritional intake of proteins and vitamins and performed appropriate activities and exercises to increase their physical recovery.
Table 3 Illustrative quotes related to themes
Themes and subthemes
|
Illustrative quotes
|
Theme 1: Self-efficacy
|
Subtheme 1: Irrational cognition of CRC and stoma
|
Quote 1: At first, I couldn’t accept that I couldn’t use my anus to defecate any more, and I felt like I was going to be a patient all my life (wry smile). I also don’t know much about stoma, so I thought it is easy to cause problems with stoma defecation. (P1)
Quote 2: I carry this thing (stoma) as a patient, so how does the patient go to work? (P16)
Quote 3: Now that I have this disease, I dare not visit my relatives and walk around, let alone travel. I even dare not go out and eat anything I really want to eat. (P11)
|
Subtheme 2: Ability to interact socially was reduced
|
-Objective disease factors lead to a reduced social interaction
|
Quote 4: Because I haven’t been out since my operation and its only been a month after surgery, where can I go? Now is also the period of recovery. (P2)
Quote 5: Because my previous social contacts are all about work. Now I’m sick, I can’t participate in work. After temporarily recuperating at home for such a long time, I just occasionally say hello to others. (P5)
Quote 6: During chemotherapy, I didn’t go out to play. (P8)
|
-A subjective strong sense of stigma leads to the refusal to socialize
|
Quote 7: I won’t tell normal people about my stoma. I seldom go out now, and I don't even go to the square, but take a walk in a place where there are few people. (P12)
Quote 8: Actually, I can't accept stoma, [...] there must be obstacles in my heart (to get along with others face to face). [...] (weeps after being silent for 12 s) I’m afraid of being rejected. [...]I definitely don’t want people to know that I have a stoma. I will avoid as much as I can and hide as much as I can. (P4)
Quote 9: I feel like this thing (stoma) is a bit of a burden. […] I'm afraid that it will be full or leak before a thing is done. How humiliating it would be if it leaked out in a public place! (P15)
Quote 10: I had a temper that flared up easily in the early stage of CRC, and if I tell something to my family once or twice but they still don’t understand, I will lose my temper with them. So, I communicated less with my family after I got sick. (P5)
Quote 11: It’s not my psychological effect, if my friend is sick and I’m not sick, I must have some scruples about him in my heart, everyone will do so, this should be very normal. (P10)
|
Subtheme 3: The level of stoma-related self-efficacy was polarized
|
-Active thinking to solve the problem of stoma care
|
Quote 12: I think experience is very important about colostomy care. You have to slowly accumulate experience from a lot of failures. The most important thing is not to let fecal water seep into the skin, which is the most important point. (P5)
|
-Evading the responsibility of self-care and relying entirely on family care
|
Quote 13: Anyway, I don’t take care of the stoma. It’s all my husband’s work. I don’t usually do it myself, and I don’t want to do it. (P8)
Quote 14: Now there is no way to take care of this stoma. Next time I will come back for a recovery operation, then my defecation will return to normal. (P3)
|
Theme 2: Decision balance
|
Subtheme 1: Motivation to RTW
|
-Working can promote physical and mental health and realize one’s self-worth
|
Quote 15: If the company approaches me, I will definitely go to work, which is a work ethic. […] I haven’t reached the retirement age yet; as long as my health permits, I must do something because I like my job. (P5)
Quote 16: It is not good to stay at home every day, and it is better to take work as exercise, which is helpful to the course of the disease. (P12)
|
-Economic needs
|
Quote 17: I am the main force of the family, and if I don’t go to work to make money, the pressure on my family will be greater. (P3)
|
-Robust social-family-workplace support system
|
Quote 18: My friends came to visit me, let me express some feelings, and also understand some of the situation in the work industry. (P5)
Quote 19: My leader also said that the post was still reserved for me, and he told me to take good care of my illness, and when I was healed, I could go to work at any time. (P15)
Quote 20: Family affection and friendship are reflected in my difficult time, and my family, friends and unit leaders all called to greet me. With regard to financial issues, I can also apply for subsidy from the union. (P16)
|
Subtheme 2: Difficulties in RTW
|
-Inconvenience while dressing and poor image
|
Quote 21: Women love to be beautiful, but I can't wear beautiful clothes anymore. If the clothes are tightly tied, they will press against the stoma, causing stoma pain and discomfort. (P7)
|
-Decrease in physical function
|
Quote 22: I have just had surgery; my physical strength will definitely be much worse, which will affect my working time and labor intensity, and my memory will certainly not be as good as it used to be. In the past, I had to remember a lot of data, but now I can only remember some special things. (P5)
|
- Problems of stoma such as continuous excretion and odor
|
Quote23: If the stoma discharges stool and produces gas, it will arch the stoma bag, which makes me uncomfortable, so I can’t work with the stoma.... It is not like normal excretion that is drained all at once, but slowly and continuously, which is very troublesome. (P7)
Quote 24: First of all, I don’t think it’s good to go to the toilet often, and I’m afraid that the stoma has a bad smell. Second, since it takes me more than an hour to go to work by car and transfer, I am worried about accidentally bumping into my stoma. (P16)
|
Subtheme 3: Decision-making to RTW
|
-Awaiting RTW and plan to overcome the difficulties
|
Quote 25: I asked the doctor to operate on me quickly so that I could go back to work as soon as possible. (P13)
Quote 26: I still want to go back to work, since I have nothing now, how to survive if we don't work? (P7)
|
-Negative response and abandon RTW decisively
|
Quote 27: I feel that it is very inconvenient for me to carry a stoma because I have to go to the toilet very frequently. I still want to take care of myself and think about work after I recover. (P11)
Quote 28: I don’t think it’s necessary to go to work when carrying a stoma, and I won’t go to work anyway. After the stoma is put back, if I return to normal diet and activities after chemotherapy, and I can go to work then. Otherwise. How can I go to work when my body is very hard? (P14)
|
Theme 3: Change process
|
Subtheme 1: Experience Change
|
-Change the social interaction
|
Quote 29: I’m sure I won't get in touch with strangers anymore, but I can get in touch with people I know slowly. (P4)
|
-Plan to adjust the work intensity or work type
|
Quote 30: I plan to recover for a while first. But if I go back to work, the labor intensity should not be as strong as before. (P5)
Quote 31: I will do more work when I don’t go to the toilet because if I do the same amount of work as my colleagues, then everyone is balanced. (P13)
|
-Regain a new life and feel life
|
Quote 32: When I first came to the hospital, I was in a terrible condition and couldn’t meet the surgery conditions. Now that the operation has been done, it is a good turnaround for me (laughter). I think stoma is really a great invention. […] I have also made a psychological transformation myself and felt great now. Later, when I had more contact, I found that there were more people with a stoma, not just me. (P1)
Quote 33: Although I married far away, my parents were not around, and my husband and I often quarreled before I got sick, and I also regretted marrying him, but now I actually had no regrets after this illness. (P4)
Quote 34: I usually don’t pay attention to my body, but after the operation, I feel that my life is very expensive. (P11)
Quote 35: When I was sick, I felt that my family and friends were fine. I think I should fight against the cancer and give back to them. I have parents, husband, and sons, and I think my responsibility has been not fulfilled yet. (P17)
|
Subtheme 2: Behavior change
|
-Pay careful attention to the situation of stoma and timely nursing
|
Quote 36: Since I am worried that my ostomy bag will fall off or need to be changed, I have to carry care items with me just in case. Just like girls bring cosmetics (laughs), after getting ready, there should be no other problems. (P1)
Quote 37: Usually, I need to pay more attention; if the excretion reaches half, I need to open the bag and pour out the excrement. (P15)
|
-Increase exercise and nutrition and improve physical and mental rehabilitation
|
Quote 38: I think there are two aspects for recovery, one is to supplement nutrition, and the other is to keep up with exercise. (P5)
Quote39: In order to maintain my body, I ate fish soup gradually, ate greens, and began to exercise. (P13)
|