Giving up work after cancer: An exploratory qualitative study of three clinical cases

1 Introduction

Major advances in the diagnosis and treatment of cancer have improved survival rates. This, combined with a higher incidence of cancer and the raising of the retirement age, means that increasing numbers of cancer survivors expect and are expected to return to work. Reviews of the international literature show that most of them succeed, with studies reporting mean work return rates of nearly 63%, albeit with major disparities [1, 2]. The difficulties encountered in resuming work (i.e. symptom management, disclosure of diagnosis and/or sequelae, lack of support throughout the return to work process) are clearly identified in the literature [2–5].

Cancer survivors have lower employment rates than reference populations [6–8]. Cancer has a major impact on career trajectories. Most of the survivors who stop working do so simply because they have lost their jobs (dismissal, contract end) [9–13]. Some, however, quit employment either out of personal choice or because they wish to retire. In one study of a large U.S. cohort, within 4 years after diagnosis, 13% of survivors had quit working for cancer-related reasons [9]. In a UK region, about 10% of cancer patients stopped working after diagnosis [14]. After breast cancer, 11% of patients in a national Danish study stopped working (or changed their job) due to sequelae [15]. In addition, a higher percentage of cancer patients in Denmark retired from their jobs after diagnosis compared to cancer free controls [16].

A number of vulnerability factors for employment loss have been identified in the literature, including cancer site, disease stage, age at diagnosis, education level, socio-occupational category and job characteristics for example [7, 17–19]. We still know little about why medically fit cancer survivors choose not to return to work. In France, the current regulations stipulate that a person can be medically fit for work but not medically fit for his or her workstation. The fitness for work is assessed by the Authority’s physician who works in the social security system. He or she grants daily payments during a sick leave and evaluates the employee’s physical ability to return to work. The physician plays an important role in an employee’s return to work by granting aids and measures to facilitate the return to employment. An example of aid is Therapeutic Part-Time [TPT] work, which allows the employee to resume part-time work temporarily for a progressive readjustment to requirements at the workplace and to retain compensation benefits for a few months.

The occupational physician assesses the fitness for the employee’s workstation with a specific examination of the patient’s health and his/her workstation. This assessment is specific: it is based on patient’s health and on his or her workstation. The role of this professional is to assist and advise the employee, providing crucial knowledge concerning the workplace situation. This medical advice about the employee’s ability to return to work can imply restrictions or recommendations to adapt the workplace. If the assessment results show that an employee is not medically fit for a given workstation, due to his/her physical or mental health, the law prescribes a redeployment. If the company cannot provide another workstation, the employee can be dismissed on medical grounds. However, that does not mean that the patient is not fit for work in another company at a different workstation.

For better understanding of why patients decide not to return to work, I rely on literature and myprofessional experience as a psychologist in an employment support service for cancer survivors (Rouen University Hospital – CHU).

Our proposition is that the difficulties patients who return to work encounter can help us to understand the factors influencing the decision of some patients to stop working. Cancer diagnosis is a traumatic event. Cancer patients who return to work report physical and psychological difficulties (fatigue, feelings of vulnerability and fear of recurrence are the most common) [20–22]. A decrease of the feeling of self-efficacy and the importance of work in their lives is re-evaluated [20–23].

In the present study, we sought to identify the psychological factors that influence the decision making process of cancer survivors, and to describe their motivations and the difficulties they encounter or anticipate. Based on three case studies, we were interested in better understanding:

the sequelae subjectively perceived by the patients;

Case studies are a popular and extremely useful method in health science research [24], and we believe they are a relevant means of identifying the factors that influence survivors’ decision-making processes. According to a summary of Yin (2003) that Baxter and Jack published in 2008 “a case study design should be considered when: (a) the focus of the study is to answer “how” and “why” questions; (b) you cannot manipulate the behaviour of those involved in the study; (c) you want to cover contextual conditions because you believe they are relevant to the phenomenon under study; or (d) the boundaries are not clear between the phenomenon and context”.

The case study approach to research facilitates exploration of a phenomenon using different data sources within its context. “A Multiple case study enables the researcher to explore differences within and between cases. The goal is to replicate findings across cases” [25].

2 Methods

3 Results

The participants’ sociodemographic, occupational and health characteristics are set out in Table 1.

4 Discussion and limitations

This exploratory qualitative study of three clinical cases of cancer patients who give up work aims to identify the psychological factors that influence the decision of some cancer survivors not to return to work, even though they are medically fit to do so. To our knowledge, there are no equivalent studies in France or internationally. A number of limitations should, however, be noted. Although each year in France, 365,000 people are affected by cancer of which 100,000 are working at the time of diagnosis, it was difficult to recruit subjects for our study. Making the choice to stop working after cancer is an uncommon situation and despite nearly two years of recruitment, we found it very difficult to access this specific population, in contrast to patients who wish or who have already returned to work. Professionals involved in the recruitment process, especially social workers, informed several patients who chose to quit employment (although it is impossible to know exactly how many) but only three people agreed to participate in the study.

The three participants appear different in terms of the locations of cancer, the treatments received, their duration and the time out of work. The study was led in France and it is necessary to take into account the cross-cultural differences between French patients and patients from other countries, and the context of the French welfare system, which affords some latitude of choice regarding return-to-work.

On the methodological level, this study is exploratory. As a result, it aims to fill a gap, to cover new ground in the field, i.e., why do some cancer survivors not return to work, even though they are medically fit to do so. This will thus be a prerequisite for new studies that will have to rely on limited prior research.

Indeed, we were able to highlight six common factors underlying the decision of the three cancer survivors not to return to work:

the economic factor reportedly did not take part in the decision-making process;

These results were in line with the findings in the literature on work-return among cancer survivors [23, 33]. Our participants expressed the same difficulties and exhibited the same physical and/or mental impact as patients who do go back to work. Social support, working environment (attitude of colleagues, hierarchy, and possible adjustments to the workplace) or occupational health services (for counseling and support) are decisive factors in returning to work. The lack of social support is a factor of vulnerability widely denounced in the literature[5, 35].

The three cancer patients’ decision not to resume employment was influenced by clear-headed anticipation of the advantages and disadvantages of doing so, and a change in their relationship with work after cancer. In the end, the advantages of quitting employment were deemed to outweigh the disadvantages, particularly in terms of protecting their physical or mental health or their wellbeing.

We also found two differences between our three participants. First of all, only Carole and Philippe expressed a feeling of social exclusion. Being made redundant or losing a post as a result of corporate restructuring wounded their self-image and was experienced as rejection by the world of work. Françoise probably did not encounter this feeling because her return to work had been expected and prepared for. It was she who declined the offers for her to go back. The fact that she was the one taking the decision seems to have protected her.

We also found a gender-related difference in the way our three participants experienced their departure from the world of work. It appeared to be particularly painful for Philippe. His career had played a large part in the construction of his identity and bolstered his self-image. The situation was rather different for the two women, as they successfully adapted to this change in their lives. A French study highlighted gender-related differences in the speed with which cancer survivors go back to work [36], with men tending to go back sooner (within 6 months of being diagnosed) than women (within 18 months of being diagnosed). As female cancers are no more disabling than male cancers, the explanation for this difference must lie in socioeconomic pressures because more often than men, women can rely on their husbands working to support their families. Philippe had intended to go back to work almost immediately after completing his chemotherapy, but foresaw so many obstacles that he did not go through with it. As with returning to work, the experience of quitting employment may vary according to gender.

In the present study, we sought to identify the factors that influence cancer survivors’ decisions not to return to work. These patients seem to have been neglected up to now, as there is scant information about them, compared with the wealth of research on those who do go back to work.

It is worth noting that we had considerable difficulty recruiting cancer survivors who had decided to give up work for good. For all three subjects, their incomes (retirement pension, daily allowances) are no longer earned by work; they are collected passively thanks to the social contributions paid by the labor force. This may have been a barrier to participation, causing embarrassment for the subjects concerned. On a social level, we may think that there is a lack of tolerance or understanding for these individuals, as it is documented that going back to work after cancer has a proven therapeutic value and is good for cancer survivors [23, 37–39]. These studies indicate that another motivation to return to work is financial. Many cancer patients report financial and insurance pressures that influence their decisions to continue working. These patients therefore find themselves under pressure to go back. People have their own representations of what happens after cancer. Survivors are assumed to be cured, and are therefore expected take part in society by working just like everyone else. Work as paid employment, productivity, competitiveness and career success are socially valued attributes, but lose meaning for some people who have gone through cancer [3]. These results are in line with another systematic review and meta-synthesis of 25 qualitative studies from 6 countries about return-to-work after cancer. Cancer diagnosis often led to a re-evaluation of what is important in life, of the meaning of work manifesting itself as shifting priorities during treatments and recovery. Commonly, the importance of work diminished compared to family and personal pursuits. Survivors who initially decide to return to work sometimes became ambivalent towards their job soon after they actually returned. Some survivors set new goals, or considered alternative plans that might be more fulfilling [39].

5 Conclusion

It is important to pursue research on this issue. Research on this specific population would make it possible to identify new research questions for the field of cancer survivorship. For example, does the decision to stop heighten survivors’ social vulnerability, particularly those who lose their financial independence?

Patients who choose not to go back to work seem to be left out of consideration in survivorship studies, therefore, the knowledge about them is largely lacking compared to the abundance of research on people who return to work.

It is essential to take this clinical reality into account so that health professionals and job retention support services start to realize that going back to work is not always an obvious next step for cancer survivors and is not systematic. The return to work after cancer is a process. Professionals who support survivors who want to return to work or who wonder about returning to work have to co-construct a project with the patients. All possible solutions have to be contemplated realistically according to the patient’s wishes. Listening is essential. Every situation is singular and it is important to establish a bond of trust. The difficulty of recruiting subjects and our experience derived from employment support service for cancer survivors, shows that this choice is uncommon, which may be due to the patients’ difficulty in expressing it.

Indeed, it takes time and it is necessary to establish mutual trust to limit the fear of judgment. Pensions, daily allowances, unemployment benefit are not earned through work; they are acquired passively through the social contributions paid by people in activity. Patients are sometimes ashamed and feel guilty as if they were taking advantage of the social system. After cancer, the reprioritization of values is common and some patients express the need to focus on key values such as health, wellbeing and family. Domestic or social activities (leisure activities or voluntary work) are considered as work, because they ensure the same functions. This shift allows them to structure their time, to create social ties, to feel useful and to meet their needs to create something or learn something new. Some cancer patients seek a kind of fulfillment that paid employment can no longer bring to them. This aspect should not be overlooked by health professionals and job retention supportservices.

As in other European countries and the United States, the struggle against cancer is organized. In 2003, the first national “Cancer Plan” was launched in France. Currently, there is a third plan (for the years 2014 to 2019) in which the issue of return to work is still a priority. Concurrently, another measure of this plan aims to mitigate the economic consequences of cancer, by improving the conditions for access to replacement income. These relevant policies could be beneficial to cancer patients who will have access to other resources if they decide to stopworking.

Conflict of interest

The authors declare no conflicts of interest.