1. General characteristics of the subjects
The general characteristics of all 50 participants (at the time of the interviews) were as follows: patients had an average age of 45.72 years; 26 were male (52.0%) and 24 were female (48.0%); 41 were married (82.0%); and 39 had an undergraduate degree or above (78.0%). No participant refused to participate or dropped out of the study. For clinical characteristics, the most frequent cancer type was breast cancer – experienced by 19 patients (38.0%) – followed by 12 patients with lung cancer (24.0%) and 9 patients with lymphoma (18.0%); the most common stage of cancer recorded was Stage 0 and 1 – in 21 patients (42.0%) – and Stage 3 – in 17 patients (34.0%). On average, 20.46 months had passed since the respondents’ cancer diagnosis. For occupational characteristics, the number of patients with a job (at the time of the interview) was the largest – at 23 (46.0%). For the type of job, office clerks accounted for the largest number at 39 (78.0%). The average number of working years was 15.72 (Table 1).
Table 1. Characteristics of All Participants (N=50)
Characteristics
|
n (%)
|
General Characteristics
Age (years), mean (SD)
Sex
Male
Female
|
45.72 (7.51)
26 (52.0)
24 (48.0)
|
Marital status
Married
Single/ divorced/ separated/ widowed
Highest Level of Education received
≤ High school
≥ College
Monthly Income (10,000 KRW)
< 500
≥ 500
Clinical Characteristics
Type of Cancer
Breast cancer
Liver cancer
Lung cancer
Lymphoma
Others
Stage
0/I
II
III
IV
Unknown
Time since diagnosis (months), mean (SD)
|
41(82.0)
9 (18.0)
11 (22.0)
39 (78.0)
27 (54.0)
23 (46.0)
19 (38.0)
4 (8.0)
12 (24.0)
9 (18.0)
6 (12.0)
21 (42.0)
7 (14.0)
17 (34.0)
2 (4.0)
3 (6.0)
20.5 (22.80)
|
Occupational Characteristics
Current Employment Status
Continued working
Changed jobs
Leave of absence
Resigned
|
26 (52.0)
1 (2.0)
16 (32.0)
7 (14.0)
|
Job Categories
Blue-Collar
Sales or Service
White-Collar
Self-employed
Duration of Work (years), mean (SD)
|
4 (8.0)
5 (10.0
39 (78.0)
2 (4.0)
15.72(10.92)
|
2. Analysis results
The participants' work-related experiences after receiving their cancer diagnosis could be divided into two categories, six subcategories, and 17 codes (as presented in Table 2). The categorical structure is shown in Figure 1. The results show that patients experienced personal and socio-environmental changes due to cancer and along with these changes, four factors affecting the decision to return to work modified participants’ ultimate decision to continue working or not, whether the latter meant taking a leave of absence or permanently leaving the job.
Table 2. Work-Related Experiences of Cancer Survivors
Categories
|
Subcategories
|
Codes
|
Changes after cancer diagnosis
|
Personal changes
|
Physical
|
Changes in appearance
|
Physical Weakness (fatigue)
|
Physical discomfort (pain, numbness, nausea, vomiting, lymphedema etc.)
|
Psychological
|
Identity changes
|
Mood changes
|
Spiritual
|
Meaning of work / Changes in priority
|
Socio-environmental
changes
|
Attitude of others
|
Change in how they perceive me/ Perceiving me as “a cancer patient”
|
Relationship with others
|
Maintaining social relationships
|
Factors influencing the return to work
|
Fear of cancer recurrence
|
Anxiety, uncertainty
|
Work-related stress
|
Financial status
|
Being financially responsible for the family
|
Burden of health cost
|
Informational support
|
Unverified information/
Lack of available information
|
Job-related work environment
|
Uncertainty of employment
|
Lack of substitute workers
|
Flexibility of work
|
Support of workplace
|
2.1 Category I: Changes after cancer diagnosis
After being diagnosed with cancer, participants were found to have undergone two main changes regarding work-related experiences; personal and socio-environmental changes. For each change, there were cases where the change had a substantial impact on increasing the patient’s challenge to continue working, and cases where the change had a negligible impact on the patient – posing no significant challenge to maintaining their previous work.
2.1.1 Personal changes
(1) Physical changes: Among the changes experienced by cancer patients, physical changes included physical discomfort caused by the treatment of cancer – such as those commonly known to accompany chemotherapy, radiotherapy, and hormone therapy. Firstly, changes in appearance – such as hair loss, changes in skin tone and complexion, and weight loss – are shown to have contributed to the resignation or avoidance of returning to work for many female patients, as in the case of Participant 35, and was the most significant factor in preventing return-to-work for service workers and patients with tasks that require a considerable number of face-to-face encounters. Second was the reduction in physical strength due to fatigue, which was complained as the most substantial physical change experienced by all cancer patients participating in this study. Third and last physical change patients experienced from receiving treatment were changes due to treatment side effects – such as pain, numbness in hands and feet, lymphedema, nausea, and vomiting. Experiencing these physical changes ultimately led participants to permanently leave work or take a leave of absence and even for those patients who continued to work, such changes exerted a negative impact on patients’ ability to work, nonetheless.
I'd lost my hair – as well as my eyebrows – and I couldn't even draw the eyebrows because (laughter) there was nothing at all to draw on. The anticancer drug was also, you see, the drug causes this edema, so my face... well... one may say “why does it matter when you are ill?”, “why is it a problem when it is [an issue of] life or death?”. But, you see, if you actually go through all of this, you know, a woman wants to be a woman at any moment (Participant 35).
(2) Psychological changes: The psychological changes were divided into two domains of changes in personal identity and emotional changes. In some cases, patients would place the stigma of a ‘cancer patient’ on him or herself, subsequently feeling devalued and diminished, regardless of their past career. In this context, the patient contemplated the potential disadvantages that may incur when he or she disclosed the news, thus avoiding telling anyone.
I just thought I might receive unnecessary stares, [such] as, ‘Is (s)he like that because (s)he can’t take care of her/himself?’, ‘Is (s)he able to get the work done as (s)he did before?’, ’Is (s)he backing out even when (s)he could do more?’ I mean... you sort of have it labeled as a cancer patient who always makes things difficult for others (Participant 26).
For emotional changes, the sense of social isolation, in particular, was noted upon as the patient viewed him or herself as a ‘good-for-nothing person’ and felt ‘distanced from the society’ after having stopped the work he or she had been engaged in. In many cases, the patient also had a feeling of ‘frustration’ or ‘despair’ that developed into the thought ‘My life is over now’, causing depression and torpor.
If I leave work, I become a quitter just because of an illness. My work is half of my life. Leaving work would add on to the already existent frustration or despair, you know. The thought of my life being over would grow and to a degree, I would feel as if I've become a good-for-nothing person, you know. Out of touch with society, that sort of feeling (Participant 23).
(3) Spiritual changes: In experiencing a serious situation such as a cancer diagnosis, patients were given time to deeply reflect on the work he or she had been doing so as to evaluate the true meaning and values of the work. This is a part of the concept of workplace spirituality [24] and, in the experience thereof, patients underwent a process of transformation regarding their understanding of the meaning of work and the values of life after cancer, when work used to fill the largest portion of their life. As in the case of Participant 20, work used to be the most fulfilling aspect of life in the past; but now, living a healthy life through ‘letting go of desires’ and ‘coordinating aspects regarding their work’ was the main goal in life.
How others thought of me was important to me. I think I used to want things to be done the way I had decided it to be; I wanted specific outcomes, and that [would lead] others [to] see me as a perfectionist. But from now on, I want to let go of desires and coordinate aspects regarding work. I used to have too many desires. That probably was what deteriorated my health. (Participant 20).
2.1.2 Socio-environmental changes
(4) Recognizing the changes in the attitude of others: The changes in the attitude of others mostly originated in the prevailing social prejudices against cancer. Notably, in regard to the respondents, it was tremendously difficult to see those colleagues who used to appreciate him or her in the past change their attitude and to avoid working with him or her. Their changes were perceived to be based upon a prejudice that the respondent’s work ability would not be the same, thinking that ‘the work won't be as complete as it did before,’ ‘their ability to perform tasks won't be as it was before,’ or that ‘the work won't be reliably performed.’ In many cases, patients who received a cancer diagnosis lost their chance to participate in important tasks or to show their ability. On the other hand, the attitude by which others treated them as a patient and showed too much attention, was a considerable burden to patients.
Before cancer, I used to be a hard worker, and the superiors all used to show appreciation for my work. Then, once I began taking sick leaves for treatment, they said: “I know you can handle it but take it easy”. I heard many of them say the same thing to me. I kept hearing it over and over, and when there came a task that I wanted to be a part of, [that I] really put myself into, they kept interrupting me so eventually I kind of let it go. You often get this feeling that others seem to think, (s)he can't do it anyway so why is (s)he so eager (Participant 24).
(5) Recognizing the changes in their relationship with others: The most significant changes in the relationship with others at work was shown to originate from the decrease in, or disappearance of, the time shared with others– such as lunch or dinner with colleagues, company dinners, or get-together events after work. What used to be a close relationship either diminished or fell apart, and the patients said they experienced social exclusion, such as being purposely ignored at meetings or being excluded or isolated from the team. However, some colleagues showed patience until the treatment was over, maintaining the same attitude as before, so that the relationship further strengthened based on loyalty and a deep appreciation of the thereof. In both cases of company-employment where much time is spent among colleagues, or self-employment where good relationships should be maintained with contractors, the relationship dynamics were regarded as being highly important by the patients.
Now, whatever task they ask me to do, they do seem to feel uncomfortable, and... well... when there is a company dinner or something... it feels like... a bit... that I am being excluded. Before, we used to drink together and everything, but now... I am a cancer patient, so... Ah, no drinking, you know, so... it feels like I'm being excluded from everything (Participant 14).
2.2 Category II: Factors influencing the return to work
In experiencing various changes, cancer patients face a number of critical factors that influence their decisions regarding whether or not to continue working. Four such factors were found in this study, as follows:
2.2.1 Fear of cancer recurrence
The fear of cancer recurrence was expressed via anxiety, uncertainty, and task-related stress. The respondents seemed to think that, as they returned to work in a physical condition that differed from the past, they would overwork or get more stressed, which may at any time cause the recurrence of cancer. Thus, even while working or planning to return to work, patients found themselves reluctant to focus on their work as they had done before, given the fear of undergoing cancer again, which was thus recognized as a significant factor.
[There is] a lot of work to do... and frankly, my body is not as healthy, and if something goes wrong, cancer could recur, and these thoughts continue to haunt me day after day. ‘Am I going to die from the pressure and stress I get from working as I did before cancer?’ It almost feels hopeless (Participant 40).
2.2.2 Personal or family financial status
Most of the male respondents, in particular, had a main goal of maintaining a livelihood as the breadwinner who ‘must take financial responsibility for the family,’ as in the case of Participant 24. In addition, patients without a spouse had numerous reasons for continuing, or starting, to work – for the purpose of maintaining a livelihood. Meanwhile, some respondents were able to take time to prepare for reemployment or could take a long leave from work without financial difficulty. In some cases, these individuals quit or retired from work altogether.
If I had a lot of money, I wouldn't have returned to the company. I have to earn, anyhow, so that I can financially support my family without difficulty. If I take time off for too long, so that I fail to readily adapt to the work and quit in the end, then I will have to look for a new job, and I'll be caught in a vicious circle. These reasons, along with the thought that I should stay employed for a long time, drove me to return to work rather early (Participant 24).
To be honest, the medical cost itself wasn't too much of a burden financially, and I received some benefits from the insurance company and I have my savings and all – even though I am not as well off as I did before. It isn't like “Ah... I don't have any money now! I should quickly return to work to earn money!” Frankly (laughter), I don't really want to go back. I want to take time off [for] at least two more years (Participant 12).
Despite the relatively large benefits received from both the Exempted Calculation of Health Insurance and private insurance in regard to the medical costs, frequent visits to the hospital – with the consequent expenses of transportation, food, and lodging – were viewed as a significant financial burden to respondents. In particular, the place where this study was conducted is a large general hospital in Seoul, the capital city of Korea, and many of the patients had to take an express train from a provincial region for consultations and appointments, thereby requiring the need to find lodging and food while staying close to the hospital for the treatment, adding on to the already existent financial difficulties.
I come from Mokpo, and the transportation alone costs 120,000 won. But for the treatment, I only pay 1,700 won; then, I eat something and take the high-speed train nearby hospital... You see, the time and money spent for coming to Seoul is much more (Participant 7).
2.2.3 Informational support
Above all, cancer patients expressed their frustration at the extremely low level of informational support with respect to cancer and work. Regarding work, the respondents reported feeling confused while sharing non-professional content acquired from the Internet or TV programs in an indiscreet way, rather than being provided with accurate and credible information. Even at the hospital – their only source of professional information – there was a general lack of educational materials or programs and, in many cases, patients found it difficult to obtain accurate information on cancer and work from the medical staff who were busy throughout the day.
I think media are the problem. I mean they portray as if cancer patients have to go into the mountains. They provide no information on patients who, like me, live in the cities. Everyone seems to be drying and eating these wild flowers or some organic [foods they cultivate]… You can overcome cancer by regularly taking the prescribed medication and even stage IV blood cancer patients can survive with the right medication but the media is like “you survive cancer by living in the mountains”… well… all morning tv programs are like that. No one survives cancer from living the modern lifestyle like me. (Participant 41).
The easy access to the Internet in Korea has led many cancer patients to use online communities in order to exchange information with other patients with the same type of cancer and to receive substantial psychological comfort. In particular, the patients who had returned to work would connect to the Internet at any time to get the information in regard to being a cancer patient at work, to share the burden with other patients of similar jobs, and to ask and answer each other's questions. However, almost no work-related information could be obtained from the medical staff at the hospital. Most patients spoke of an experience – as in the case of Participant 3 – where the medical staff was too busy to give him or her a change to ask about work, and when they did ask about returning to work, the answer was brief and without any concern for the type of work or the tasks involved; ‘you can work’ or ‘you can return to work’ was all they received; as such, patients felt uncertain whether it really was alright to return to work.
The professor didn't ask, and I had no chance to ask. They come in, and it's over in three minutes. They are busy, I know, but it's just [that] you don’t have enough time or the conscience to ask anything in that short window of time... not enough time for just consultations either, because it's just the way it is... I have so many questions but what can I do? I just go to [an] Internet community to leave questions and get a lot of information there (Participant 3).
2.2.4 Job-related work environment
After being diagnosed with cancer, the greatest concern patients had was the uncertainty of employment. Even when it is guaranteed, receiving a negative performance assessment led to disadvantages in salary or promotion. Thus, some patients had to return to work immediately after surgery or never express the hardship they were going through during treatment. Some patients had lost their jobs after notifying the company of their cancer diagnosis and were, subsequently, job-seeking while in the middle of treatment. Due to the lack of substitute workers, it was highly difficult for cancer patients to use sick leave or a leave of absence for their treatment. Although the sudden cancer diagnosis, and the onset of treatment like surgery, made it inevitable, patients were sometimes criticized for being ‘irresponsible’ at work, as in the case of Participant 13. The pressure from colleagues regarding the extra work they had to take from lack of substitute workers aggravated the circumstance.
I was totally stressed out right up to the moment I took my leave of absence. This is, well... they didn't make it easy for me. You have to work, they said, because when you’re gone, another person has to take on your workload. That was their reaction. They told me that I was irresponsible (Participant 13).
The flexibility of work was a significant requisite for cancer patients who frequently visited the hospital for treatment and status examination. In some cases, it was possible to adjust the working hours until full recovery or to freely take an afternoon off or a day off for the chemotherapy or radiotherapy, or to take additional leave of absence or request for childcare leave – although these options were rarely available without restriction. On the other hand, patients seemed to be satisfied with the mere presence of a financial support system for sick workers or a separate place where they could take a rest, so that they expressed the willingness to quickly return to work.
When it gets hard while working, I go to the lounge and take a few minutes’ break. Because there is a place like that, I can ease the pressure from others a bit. I also live within a few minutes walking distance from the company, and when it gets too hard, I go home during lunch to have a nap for a while. The company has shown me that they understand all that, so I feel I should commit myself to this company (Participant 18).