Taking an obscure path,a common concern during returning to work after cancer

Abstract

BACKGROUND:

Returning to work after cancer is a complicated phenomenon.

OBJECTIVE:

This study aimed to explore Iranian cancer survivors’ concerns during returning to work.

METHODS:

This qualitative study was conducted on 19 cancer survivors at a referral center of cancer Northwest of Iran. Data were collected through individual semi-structured interviews and analyzed using a conventional content analysis method.

RESULTS:

“Taking an obscure path” emerged as a main concern of cancer survivors in returning to work which included three categories of limited Information, hesitation in personal abilities and worry about the reactions of workplace.

CONCLUSIONS:

Cancer survivors were uncertain about returning to work. This uncertainty can distress cancer survivors in the process of returning to work and may cause them to delay the process. The staff of healthcare systems including physicians, nurses and occupational rehabilitation specialists must address the concerns of cancer survivors and prepare them to return to work. Moreover, by working in collaboration with employers, rehabilitation specialists must provide appropriate conditions for cancer survivors to safely return to the workplaces.

Keywords

Uncertainty cancer return to work Iran qualitative research

1. Introduction

Incidence of cancer is growing at the age of employment (15–65 year old) and nearly half of the cancer diagnosis occurs at this age (Bray et al., 2018; Angela GEM de Boer, 2014). In recent years, due to improved screening, diagnosis and treatment methods, the number of cancer survivors is on the rise (De Angelis et al., 2014; DeSantis et al., 2014; Miller et al., 2016). Cancer extremely affects the career life of the patients and in most cases separates them from work environments (Tan, Loh, Su, Veloo, & Ng, 2012). Losing or leaving a job following the cancer diagnosis makes cancer patients in trouble financially and psycho-socially (Banning, 2011; Nekhlyudov et al., 2016; Sharp, Carsin, & Timmons, 2013).

Many cancer survivors are able to return to work and re-engage in their occupational activities (Duijts, Dalton, Lundh, Horsboel, & Johansen, 2017; Stergiou-Kita et al., 2014). In previous studies, it has been found that 43–93% of cancer survivors returned to work after cancer (Edwards et al., 2010; Islam et al., 2014; Spelten, Sprangers, & Verbeek, 2002). Return to work (RTW) following cancer is highly important and nowadays such a return is considered as one of the quality of life indicators (Balak, Roelen, Koopmans, Elike, & Groothoff, 2008; Stergiou-Kita, Pritlove, Holness, et al., 2016; Tan et al., 2012). For cancer survivors, returning to work means as returning to normal condition (Isaksson, Wilms, Laurell, Fransson, & Ehrsson, 2016) and it is a way to meet their financial and psycho-social needs (Stergiou-Kita et al., 2014).

Returning to work after cancer is a complex phenomenon that influenced by a number of factors (Islam et al., 2014; Stergiou-Kita et al., 2014; Tamminga, de Boer, Verbeek, & Frings-Dresen, 2012). It was found that cancer survivors perceive the RTW as a challenging and contentious phenomenon (Stergiou-Kita et al., 2014; Tiedtke, de Rijk, Donceel, Christiaens, & de Casterlé, 2012) which may threaten their health (Stergiou-Kita, Pritlove, Holness, et al., 2016; Tiedtke et al., 2012).

Most of the researches about cancer survivors returning to work have been conducted in developed countries (Coleman, 2010; Duijts et al., 2014). But, there is limited information about the RTW of cancer survivors and their concerns about return to work in developing countries (Islam et al., 2014; Tiedtke, de Rijk, Dierckx de Casterlé, Christiaens, & Donceel, 2010). The incidence of cancer is increasing in developing countries and more than half of the new cancer cases are related to these countries (Coleman, 2010).

Iran is a developing Islamic country located in the Middle East. The population of Iran is more than 80 million with most of them being in the working age (Statistical center of Iran, 2018). Cancer incidence is increasing in Iran (Farhood, Geraily, & Alizadeh, 2018). A study reported that the incidence of cancer is about 128 per 100,000 in Iran and this will be more than 2-fold by 2035 (Mohebbi et al., 2017). So, it is necessary that healthcare systems make themselves equipped to manage such changes. Iran has a different cultural and social structure from other parts of the world. Supportive associations of cancer survivors are poorly developed in Iran and less attention has been paid for occupational rehabilitation of cancer survivors.

Exploring experiences of cancer patients and studying their transition from disease phase to recovery phase and returning to working environments provide valuable information to healthcare systems and employer institutions that pave the way for cancer survivors to return to work (Fisher & O’Connor, 2012; Nowrouzi, Lightfoot, Cote, & Watson, 2009; Sandberg, Strom, & Arcury, 2014). Since, qualitative designs are relevant method for studying personal experiences and complicated social phenomena (Grove, Burns, & Gray, 2012; Polit & Beck, 2010). This qualitative study aimed to identify the concerns cancer survivors experience when returning to work.

2. Methods

2.1. Setting

This study was conducted using qualitative, exploratory content analysis methods, in the workplace of cancer survivors and in a referral center of cancer in the East Azerbaijan Province of Iran.

2.2. Ethical consideration

Before the study began, the study plan was approved by the Ethics Committee of the Tabriz University of Medical Sciences under the code TBZMED.REC.1394.755. The study protocol conformed to the ethical standards of the Helsinki Declaration of 1975, as revised in 2000. In this study, prior to data collection, each participant was verbally informed about the objectives and procedures of the study and then signed an informed consent form. Each participating individual was assigned a number to protect confidentiality.

2.3. Participants

In this study the cancer survivors who were in working age (15–65 years old) and those who had returned to work after cancer met the inclusion criteria. We used convenient and then purposeful sampling strategies to recruit cancer survivors who returned to work following cancer treatment completion. In this regard, the first several participants included some male participants. Then, In line with an iterative approach to data collection and analysis, we proceeded with purposeful sampling wherein we recruited participants who represented variation in demographic characteristics (ie., age, socio-economic status, and type of employment). To access the participants with the desired demographic characteristics, each of the participants and the cancer center personnel were asked to introduce more eligible participants. A total of 19 Iranian cancer survivors participated in this study.

2.4. Data collection

We conducted individual semi-structured interviews with study participants between January 2016 and May 2017. Interviews were conducted in Azari or Persian and at a time and place preferred by the participants. In order to establish rapport and trust we began each interview by asking some general questions to understand the nature of the cancer survivors’ employment prior to their cancer treatment. We then asked a series of open-ended questions about their return to work following completion of treatment, including: How did you feel about returning to work? What were your experiences of returning to work? What were your concerns during returning to work? What problems did you have for returning to work? Prior to main interviews, some pilot interviews were conducts to help the researchers in determination of the study questions. The quality of the questions was ensured by regular weekly meetings with team members. We also asked probing questions to obtain deeper and more detailed accounts of participants’ experiences. In total, we conducted 23 interviews with 19 participants. Four of the participants were invited to second interview in order to complete and confirm preliminary findings. Sixteen interviews were conducted at participant’s work place and seven at cancer center. Data collection ceased after reaching the point of data saturation, wherein no new codes or concepts were generated from the interviews. The interviews lasted between 20 and 70 minutes, with the initial interviews longer and more detailed. As data collection and analysis proceeded, we asked more specific questions to flesh out the evolving categories and thus the interviews became shorter. Each interview was digitally recorded, transcribed verbatim and entered Maxqda10 for analysis.

2.5. Data analysis

We initiated data analysis immediately after the first interview using a conventional content analysis approach (Graneheim & Lundman, 2004). Conventional contenet analysis is a relenvant method for studing personal experiences and subjective phenomena(Elo & Kyngas, 2008). We carefully read each interview transcript multiple times in order to analyze the data. After then, we identified, coded and extracted semantic units existing in each sentence of the transcript. We subsequently examined the identified codes as a team and classified these into categories according to their similarities and differences. In the next step, the categories were merged into more abstract theme namely “Taking an obscure path”.

2.6. Trustworthiness

We enhanced the rigor, or trustworthiness of the study in several ways (Lincoln & Guba, 1985). Study credibility was enhanced because one researcher, M.Z., conducted all of the interviews, was immersed in data collection and analysis and emerging study findings were discussed with study participants and team members. To increase dependability, the process of data collection and data analysis was assessed by team members during weekly meetings. The confirmability of the findings was maintained by the writing of a journal/audit trail that detailed the decisions made and progress of the study. Our use of purposeful sampling to recruit study participants who varied according to socio-demographic characteristics bolstered the transferability of the findings.

3. Results

3.1. Participants’ characteristics

The mean age of the study participants was 40.01±10.80 years and 11(58%) of the 19 participants were male. The time from diagnosis to RTW averaged 8.5 months. Full characteristics of the study participants are presented in Table 1.

Table 1
Cancer Survivors Characteristics

N Age Time to RTW^* Gender Marital status Job Type of cancer Interview location

1 51 7 Male Married Carpet weaver lung Cancer center

2 28 5 Male Married Worker Testis Cancer center

3 42 5 Male Married Worker liver Cancer center

4 30 10 Male Married Self-employed Colon workplace

5 28 15 Male Single Self-employed leukemia Cancer center

6 48 14 Male Married Carpet weaver leukemia Cancer center

7 36 4 Male Married Barber leukemia workplace

8 34 10 Female Single Pharmacy technician Breast workplace

9 48 16 Female Single Nurse Breast workplace

10 35 8 Female Single Nurse Breast workplace

11 52 9 Female Single Nurse Colon workplace

12 36 11 Female Married Nurse Breast workplace

13 24 6 Male Divorced Worker leukemia workplace

14 49 9 Female Married Nursing manager Breast workplace

15 34 6 Male Married Mechanic leukemia workplace

16 32 8 Male Married Nurse aide Hodgkin workplace

17 65 4 Male Married Physician leukemia workplace

18 52 7 Female Married Office Clerk Colon workplace

19 36 8 Female Married Secretary Colon workplace

N	Age	Time to RTW^*	Gender	Marital status	Job	Type of cancer	Interview location
1	51	7	Male	Married	Carpet weaver	lung	Cancer center
2	28	5	Male	Married	Worker	Testis	Cancer center
3	42	5	Male	Married	Worker	liver	Cancer center
4	30	10	Male	Married	Self-employed	Colon	workplace
5	28	15	Male	Single	Self-employed	leukemia	Cancer center
6	48	14	Male	Married	Carpet weaver	leukemia	Cancer center
7	36	4	Male	Married	Barber	leukemia	workplace
8	34	10	Female	Single	Pharmacy technician	Breast	workplace
9	48	16	Female	Single	Nurse	Breast	workplace
10	35	8	Female	Single	Nurse	Breast	workplace
11	52	9	Female	Single	Nurse	Colon	workplace
12	36	11	Female	Married	Nurse	Breast	workplace
13	24	6	Male	Divorced	Worker	leukemia	workplace
14	49	9	Female	Married	Nursing manager	Breast	workplace
15	34	6	Male	Married	Mechanic	leukemia	workplace
16	32	8	Male	Married	Nurse aide	Hodgkin	workplace
17	65	4	Male	Married	Physician	leukemia	workplace
18	52	7	Female	Married	Office Clerk	Colon	workplace
19	36	8	Female	Married	Secretary	Colon	workplace

^*per month.

3.2. Taking an obscure path

In this study “Taking an obscure path” emerged as a main theme as result of data analysis. Lack of clarity and not knowing what to expect throughout the RTW made cancer survivors doubtful about returning to work. Cancer survivors perceived returning to work as a process of overwhelming uncertainty and anxiety that affected their decision about returning to work. This theme is comprised of three categories including: Limited information, hesitation in personal abilities and worry about the reactions of workplace.

3.2.1. Limited information

The results showed that most of the cancer survivors had limited information about their disease as well as the possible RTW, which created worry, fear and hesitation. Lack of knowledge about their disease, including duration of the disease, details about their treatment, complications and prognosis created uncertainty about when and even if returning to work was possible. Furthermore, the survivors did not know whether returning to work could negatively affect their health and feared that RTW would cause a cancer recurrence of another related illness. The participants were also unaware of the type and amount of work that would be best given their treatments, treatment-related health effects and ongoing recovery, and thus they were hesitant to return to full-time employment and unsure what they would be able to do at work. A 48 years old male with leukemia stated:

“I didn’t have previous experience of cancer, I didn’t know what the cancer was, how long it would take and when I could get back to normal … I didn’t even know at all if I could get back to work” (p. 6).

Another 30 years old male with colon cancer declared:

“I was afraid of getting back to work; I kept asking myself if I could handle my job; when I could get back to work; if working would be harmful to my health; I was afraid my condition would get worse after getting back to work” (p. 4).

According to the participants, their employment status was not considered nor was their RTW acknowledged as important by the medical team at any point. Thus, the cancer survivors received no information, resources or support to assist them to return to work, which intensified their uncertainty. A 28 years old male with leukemia stated:

“During the time I was admitted to the hospital, no one ever talked about my job, if I could get back to work or not. The time I was getting discharged, they only taught me about my diet. After I got discharged, I didn’t know at all when I was able to get back to work; I had doubts about getting back to work” (p. 5).

3.2.2. Hesitation in personal abilities

The cancer survivors experienced a range of treatment-related effects and complications such as weakness, fatigue, nausea, pain, motion restriction, depression and reduced physical and emotional capabilities that impaired their physical and psychological functioning. Accordingly, the cancer survivors questioned their ability to perform of their job tasks and cope with work demands ultimately creating uncertainty about returning to work. A 36 years old female with breast cancer explained:

“After chemotherapy, my body was no longer the same body; I couldn’t stand up for too long; I would get easily annoyed when I was feeling overwhelmed; I wasn’t sure if I could stay at work (p. 12).

Another 42 year old male with liver cancer declared:

“The thought of either getting back to work or abandoning it was eating me up. I would keep asking myself if I could handle my job; if my body could endure the job and if I may face any problems or be in trouble” (p. 3).

Additionally, the cancer survivors were unsure of whether or not they would be capable of meeting their employer’s expectations, many of whom were unaware of the cancer survivors’ treatment details and ongoing health challenges. None of the survivors described having related discussions with their employers. The cancer survivors were concerned that the employers would expect them to function the same as prior to their cancer treatment that made them apprehensive about returning to work. A 35 years old female with breast cancer stated:

“I was afraid I couldn’t meet the employer’s expectations; I was afraid I would get into trouble in case I couldn’t meet the employer expectation. For example, my employer expected me to do my job as normal as before I was sick. But, I couldn’t work like before, and I was afraid one may think I was working far below my full potential” (p. 10).

3.2.3. Worry about the reactions of workplace

The cancer survivors worried that their colleagues and employer would react negatively to their return to work. Some survivors described changes in their physical appearance as a result of radiation therapy and/or chemotherapy that were difficult to hide and that could potentially contribute to being ostracized, stigmatized, and labeled as weak or inadequate and not accepted by their colleagues. They were concerned about whether they would be accepted and supported by their colleagues. A 48 years old female with breast cancer declared:

“After chemotherapy, my face had completely changed. I’d lost my hair and my eyebrows; I’d lost much weight; I was worried about how my colleagues would react to my return; I was afraid they wouldn’t accept me; I was afraid to be stigmatized and labeled as a disabled person” (p. 9).

A 28 years old male with leukemia declared:

“Before returning to work I was concerned about my colleagues’ behaviors; I was afraid of their strange looks; I was concerned that they would get themselves away from me because of my cancerous appearance” (p. 5).

Another 52 years old female with colon cancer stated:

“I didn’t know what to do; I wanted to get back to work sooner but was worried about how I would be treated. I would keep asking myself how would my colleagues treat me? Would they accept me?”(p. 18).

Many of the cancer survivors also worried that their employer would not accept them back at work considering they had had cancer, continued to have ongoing health challenges and might not be able to work as they had previously. They feared that employers would be unwilling to make accommodations or alternate working arrangements that would support their return to work. A 34 years old female with breast cancer declared:

“Well, I’d just survived a critical condition; I didn’t know how the employer would treat me; I was afraid to be shown the door; I was afraid the employer wouldn’t understand my circumstances; I was worried the employer wouldn’t accept me if he knew I couldn’t work as before” (p. 8).

Another 34 year old male with leukemia stated:

“I was afraid to lose my job, I was worried about the employer reaction, I cloud not work as before, I would keep asking myself would the employer accept my condition?”(p.15).

4. Discussion

This qualitative study aimed to explore Iranian cancer survivors concerns during returning to work and provided valuable insight in this regard. In this study, participants were purposefully selected from a diverse range of demographic characteristics. “Taking an obscure path” emerged as main theme which comprised of three categories including limited information, hesitation in personal abilities and worry about the reactions of workplace.

Taking an obscure path was emerged as the main concern of the cancer survivors during returning to work. This study revealed that returning to work after cancer was a stressful decision for cancer survivors. It was found that cancer survivors when deciding to return to work feel that they are taking step in a vague path that is fraught with uncertainty. Such an uncertainty affected their decision about returning to work and made the returning to work process as an unpleasant experience. It was found that such an uncertainty was due to limited information, hesitation in personal abilities and worry about work place reaction.

Similarly, Previous studied reported that returning to work after cancer is a challenging process which accompanied with uncertainty and hesitation (Miller, 2012; Tiedtke et al., 2012; Tjulin, MacEachen, & Ekberg, 2010). Isakson et al. stated that cancer survivors had many thought about returning to work during sick leave and they were concerned that what would happen at work, they were concerned about the employers’ demands and reaction for their return (Isaksson et al., 2016). Tiedtke et al. reported that uncertainty during returning to work would turn the RTW process into a bitter experience and may cause cancer survivors to delay the process (Tiedtke et al., 2012).

This study finding suggests that cancer survivors experience great stress and tension during the RTW process because of uncertainty. The study findings are consistent with Iranian context. In Iranian context occupational and professional rehabilitation is the missing link in providing medical care in health-care system and many cancer survivors are confused about returning to work after discharging from the hospital and gaining relative recovery. So, it is important that cancer survivors be supported in returning to work process. Supporting cancer survivors is highly important in making them decide to return to work and facilitates their return to workplaces (Greidanus et al., 2018; McKay, Knott, & Delfabbro, 2013). In this regard, it is essential for health-care systems, rehabilitation practitioners and employers to be aware of the concerns of cancer survivors in returning to work and support them in coping with these concerns. Health-care experts, including physicians, nurses, and rehabilitation practitioners, should receive training on cancer survivors’ occupational rehabilitation and prepare cancer survivors to return to work. They must also provide cancer survivors with necessary information on the disease and RTW process. Moreover, occupational rehabilitation specialists should be in close interaction with cancer survivors and employers and also improve the workplace environment by addressing the abilities and concerns of cancer survivors (Nilsson, Olsson, Wennman-Larsen, Petersson, & Alexanderson, 2011; Stergiou-Kita, Pritlove, van Eerd, et al., 2016; Tamminga et al., 2012). It was found that making a logical balance between cancer survivors’ abilities and their responsibilities in work environments would decrease cancer survivors’ uncertainty about returning to work and encourage them to return to work (de Boer et al., 2015; Son & Lee, 2015; Stergiou-Kita, Pritlove, van Eerd, et al., 2016; Tamminga et al., 2012).

4.1. Limitations

It should be noted that this study results might not reflect all the facts in this area. The findings of this study are limited to cancer survivors’ who had returned to work after cancer and do not encompass the experiences of those who hadn’t returned to work after cancer. It is suggested that future studies explore the cancer survivors’ experiences who had not returned to work. Also, it is recommended that future studies explore other stakeholder experiences such as medical staffs and employers.

4.2. Conclusion

Cancer survivors perceive return to work after cancer as taking step in an obscure path. Limited information about the disease and RTW, hesitation in personal abilities and worry about the reactions of workplace provide the basis for cancer survivors to feel uncertain and insecure about returning to work, to the extent that make them live in a state of duality. On the one hand, motivating forces lead cancer survivors to return to work, but on the other hand, uncertainty makes them doubtful to return to work.

4.3. Clinical implications

Occupational rehabilitation should be initiated immediately after the cancer diagnosis and simultaneously with other diagnostic-therapeutic measures. Physicians and medical staff as well as occupational rehabilitation specialists should provide cancer survivors with information on the disease and RTW process, and prepare them to return to work. It is also imperative for rehabilitation specialists to collaborate with employers, and prepare workplaces for cancer survivors to make them more willing to return to work.

Author contributions

In the present paper MZ is responsible for design, data gathering, analyzing and draft of the article. VZ, LV and AR read the transcribed interviews, reviewed the analyzing process and have given main comments during the analyzing and writing process to improve the scientific quality.

Conflict of interest

The authors declare no conflicts of interest in this study.

Footnotes

Acknowledgments

This article is part of a doctoral study in nursing sponsored by the Deputy of Research at the Tabriz University of Medical Sciences. The authors would like to appreciate all the individuals participating in the research project.

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