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

Abstract

BACKGROUND:

Enabling cancer survivors to resume employment has become a public health issue in France, but not all survivors wish to or would benefit from doing so.

OBJECTIVE:

This French exploratory qualitative study was designed to identify the psychological factors that influence the decision of some cancer survivors not to return to work, despite their doctor’s permission.

METHODS:

We conducted semi structured interviews with two women and one man. Each interview lasted around 90 minutes. Qualitative analysis of the interviews (clinical case studies) highlighted a number of similarities and differences among these three patients.

RESULTS:

Comparisons revealed six similarities: 1. the issue of income and its importance had no part in the decision-making process; 2. patients anticipated work return problems; 3. they therefore abandoned their plans to go back; 4. work lost its meaning for them; 5. repressed affects surfaced or they reassessed their career plans; and 6. their life trajectories were disrupted, with the stages being telescoped together. There were also two differences: 1. feelings of social exclusion for two participants, and 2. gendered experiences of quitting employment.

CONCLUSIONS:

Health professionals and job retention support services need to take this clinical reality into account and acknowledge that not all patients wish to resume work or would benefit from doing so.

Keywords

Cancer survivors employment decision-making process case studies return to work

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;

their consequences on daily life;

the link to work (prior and after diagnosis);

the reasons that lead to stop working.

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

2.1 Participants

Part of a doctoral research project, the larger study from which the data analysed here are a subset, was approved by the ethics committee of Aix Marseille University. To recruit participants, the author (a psychologist who is also a PhD candidate) sent information about the study to professionals (oncologists, psychologists, social workers) working at Rouen CHU. To be included in the study thepatients had:

To be working at the time of diagnosis;

To be on sick leave when they started their treatment;

To have ended all the curative treatments by the time the study was conducted;

To wish to resume work, to have returned to work or to have quit employment.

Patients who met the inclusion criteria enrolled themselves, using the information given to them, or they gave their contact details to the professionals that had informed them about the study in order to be interviewed by the author. All participants (n = 80) volunteered for the study. They provided their written informed consent to the author who informed them that their data would remain anonymous and confidential.

In this paper, only the results of the group of three participants (two women and one man) who decided to quit employment out of personal choice are presented. A statistical treatment to identify return-to-work barriers and facilitators is currently under way on the other samples (24 patients who want to or 53 who have already returned to work). For our small sample of three subjects who chose to quit employment, case studies were more relevant to explore this field of survivorship.

All participants wished to express themselves about return-to-work after cancer diagnosis and about their personal experiences. Although three subjects reported a number of after effects, those would not have prevented their return-to-work. Two participants had had their health assessed by the occupational physician from the employment support service for cancer survivors at Rouen CHU [26]. The third patient had been declared medically fit for work by her oncologist.

2.2 Data collection and analysis

From June 2012 to July 2014, the author conducted a semi-structured interview that lasted around 90 minutes at the CHU Department of Occupational and Environmental Medicine face-to-face with each participant. Each participant agreed to theinterview being audiotaped. Five different topics were addressed:

their disease history;

the impact of the cancer, its treatment and sequelae on their everyday life;

work satisfaction prior to going on sick leave;

perceived changes in their relationship with work since having cancer;

the reasons behind their decision not to return to work and, in particular, the potential influence of economic factors.

These topics were chosen in the light of cancer survivors’ work-return difficulties identified as well in the literature, as well as clinical experiences derived from employment support service for cancer survivors at Rouen CHU. The transcribed interviews were analyzed in two phases the first of which included content analysis involving identification of themes and factors. The second included interpretation of identified themes and factors. To improve study validity during the analysis phase, two other researchers (PhD in psychology and occupational medicine) participated in both review phases.

The analysis of the three clinical cases highlighted a number of similarities and differences. During the analysis, it was chosen to return to the propositions (the difficulties encountered by patients who return to work can help to understand the factors influencing the decision of some patients to stop working) and to focus on the research questions (what psychological factors influence the decision to give up work?). Competing propositions were discussed to provide an alternate explanation of the decision-making process that leads to stop working [25]. It was important to consider external factors: the patients’ economic situation in the decision-making process.

3 Results

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

Table 1
Participants’ sociodemographic, occupational and medical characteristics

Carole Françoise Philippe

Sex Female Female Male

Age at diagnosis 56 48 55

Education level High-school diploma High-school diploma High-school diploma

Socio-occupational category Salaried worker Salaried worker Executive

Marital status Married Married Married

Number of children (children to support) 3 (1) 2 (0) 2 (0)

Cancer site Breast Leukaemia Lymphoma

Treatment Surgery, Chemotherapy, Radiotherapy and Hormone therapy Chemotherapy, Radiotherapy and Bone marrow transplant Chemotherapy

Duration of treatments 10 months 19 months 6 months

Duration of time out of work 51 months 44 months 28 months

Reported sequelae Weakness, pain, and attentional and memory problems Weakness and tiredness Weakness, pain, and sleeping, attentional and memory problems

	Carole	Françoise	Philippe
Sex	Female	Female	Male
Age at diagnosis	56	48	55
Education level	High-school diploma	High-school diploma	High-school diploma
Socio-occupational category	Salaried worker	Salaried worker	Executive
Marital status	Married	Married	Married
Number of children (children to support)	3 (1)	2 (0)	2 (0)
Cancer site	Breast	Leukaemia	Lymphoma
Treatment	Surgery, Chemotherapy, Radiotherapy and Hormone therapy	Chemotherapy, Radiotherapy and Bone marrow transplant	Chemotherapy
Duration of treatments	10 months	19 months	6 months
Duration of time out of work	51 months	44 months	28 months
Reported sequelae	Weakness, pain, and attentional and memory problems	Weakness and tiredness	Weakness, pain, and sleeping, attentional and memory problems

3.1 Clinical case 1

Carole was 60 years old when she enrolled in the study. She used to be a foster mother. After being diagnosed with breast cancer, she was made redundant on medical grounds. “People are dismissed for making serious mistakes, and here was I getting the sack because I was seriously ill. It was hardaccepting that I’d been thrown on the scrapheap.” At the time of the interview, she was registered with a government-funded employment agency and receiving jobseeker’s allowance. She was dismissed on medical grounds because she could no longer perform her former job as a foster mother but she was assessed as able to work in another job. She reluctantly admitted that she was not actively looking for work and intended to retire in a few months’ time. Carole no longer had “the strength to go on working” and said she needed to focus on herself. She obviously felt a degree of guilt, however, adding “perhaps that’s a bit selfish.” She felt she had “given” a lot to her work and been “worn down.” For her, going back to her job would just be too hard. “I absolutely can’t see myself working again. I’ve lost the work habit, the strength, the capacity. I can’t see myself working for a company again […] none of that means anything to me anymore. Now I only work when I want to.” Carole felt physically diminished. Her illness, plus the time she had spent off work while receiving treatment, had made her realize just how hard her job had been, wearing her down and making her depressed. Although Carole was not currently in paid employment, she still regarded herself as working. She had taken up new activities (home improvement, sports and volunteering) that lent meaning to her daily existence. For the time being, to protect her mental health and “to prevent a relapse of depression” she had chosen to focus on herself and her family, who had suffered from her disease. Although her income had been halved, she believed she had a comfortable enough lifestyle, owing to financial support from her husband.

3.2 Clinical case 2

Françoise was 50 years old when she was interviewed for the study. Before being diagnosed with leukaemia, she had worked as a secretary. She was on sick leave for nearly three years. After recovering, she initially wondered what to do with her life, and eventually decided not to return to work. At the start of the interview, she intimated that she might look for employment later on, but did not intend to go back to her old job as she foresaw too many problems. Having to move to a different post and only being able to work part-time for health reasons at least at first were both perceived as obstacles. Her inability to do her old job probably affected her self-image. “But even half-time, I think I would have difficulties holding the position I had before, you have to be present. It would not be like when you are present every day and you are holding a position and you are managing the files.” This redeployment prevented her from investing in a new job which, for her, would necessarily be less rewarding. “If I do an office job, without particular attraction, I would be afraid to be bored compared to the tasks that my employer will give me. It will not be at all the same job. I would not have the same interest in things.”

She saw the lack of continuity inherent to part-time work as a barrier to committing herself to any future post. Even though Françoise was still in contact with her co-workers and superiors, she felt that “returning to work, rebuilding relationships, seeing everybody again, would be very difficult. Getting back into the world of work is never easy.” She felt she was out of sync with her colleagues. Cancer served as catalyst for a “change of direction” she had envisaged before falling ill. After treatment completion, an altered sense of self is possible. There is some evidence in the literature that cancer patients also may experience an enhanced sense of self and the world after treatment, finding benefit in their experience (life appreciation, life possibilities, spiritual growth, and personal strength for example) [27]. “My illness definitely precipitated this change and my desire to stop working.” Françoise cited her age and her current life stage. “If I was only 30 or 40, I’d certainly already be back at work, I wouldn’t have remained unemployed for so long, but as I’m 50, leaving employment for good is a very real option”. Illness can disrupt our relationship to time, and at 50, she thought it was reasonable to quit, as though her professional life had come to its natural end and she had found another way of creating balance in her life. Legally, 50 is not the age required to retire but she feels that at this life stage she no longer needs to work and she aspires to a new way of life. Françoise derived satisfaction and fulfilment from her everyday social, domestic and leisure activities. Her income had halved, but she benefitted from her husband’s financial support. As a civil servant on sick leave, she has the right to take a sabbatical and this is what she is planning to do when she can no longer receive daily payments from social insurance. She will no longer receive any income.

3.3 Clinical case 3

Philippe was 57 years old when he was interviewed. He used to be a workshop manager. Two years earlier, he had been diagnosed with lymphoma. Since then, he had been on sick leave. During his absence, his department had been closed down, and his team members moved to other posts within the company. During his working life, Philippe had been exposed to asbestos and wondered whether his cancer was work-related. He saw an occupational physician at the Department of Occupational and Environmental Medicine to assess an occupational origin of his cancer. There was no evidence that the lymphoma was related to asbestos exposure. He suffered from debilitating side effects (fatigue, pain, sleep disorder, attention and concentration difficulties, and breathing difficulties) that constricted his social life, such that he seldom went out and had very few leisure activities. “I do things anyway but it is no longer terrific.” Nevertheless, with some adjustments, Philippe is fit for work. Illness had radically changed his lifestyle and put an end to his personal and professional projects. He was still having trouble finding his bearings. Philippe had been keen to return to work. “Going back was very important to me. It was the goal I’d set myself, and I told everybody, ‘In 6 months’ time, I’ll have finished the chemo and I’ll be back’. But that’s not how things worked out.” Because his department had been closed down, he was left with two choices: to either go and work in a different department, “but returning in those circumstances would have been difficult.” He had the feeling of having “to start from the scratch” or to accept early retirement. Philippe opted for the latter, but it left him with a feeling of unfinished business. Had his job been waiting for him, things would have been different, but because of the changes within the company, he felt there was no longer any place for him there. He now had a new outlook on life and had changed the way he behaved towards other people. “My health now comes first, it takes priority […] I’m lucky this episode ended well and that it’s all over and done with […] because that’s not how it is for everyone. It puts things in perspective, it changes the way you look at other people. You’re more caring and understanding. It’s a reality check.” Philippe’s income had remained stable since he receives daily payments from social insurance and a remainder from his employer. He makes as much money on sick leave as he would if he was working.

3.4 Similarities and differences between the three clinical cases

We looked for differences and similarities between these three cancer survivors, in order to identify the factors that influenced their decision not to return to work, even though they were fit enough to do so according to the physicians. We rely on our propositions that the difficulties patients who return to work encounter can help to understand the factors influencing the decision of some patients to stop working. Before that, we are going to study an external factor that may be involved in their decision, the economic factor.

3.4.1 An external factor

In France, during a sick leave, the insurance agency pays the employee a per diem, offsetting the lack of pay. The employee is protected by law and keeps his job. The legal duration of sick leave and payment of daily allowances vary according to the employee status and whether he holds a job in the private or public sector. When patients wish to return to work, TPT work is recommended. It allows the employee to resume part-time work, and to retain compensation benefits for a few months. TPT work is granted on a temporary basis.

This is why the Authority’s physician can offer the employee a “transition for disability” (called “invalidité” in French), when the maximum duration of the sick leave is reached and therefore the per diem payment ceases while the employee is not yet able to return to work. The transition for disability can also be offered after a TPT because it is considered as part-time sick leave. This transition for disability offers the employees financial security. It allows returning to work part time (as a specified category). Unlike TPT work, it is durable and can be accessed for several years.

When an employee is dismissed, like Carole, for economic reasons or medical unfitness, he or she receives a legal severance pay. Afterwards, the dismissed employee receives an unemployment benefit. The amount of the allowance varies according to:

the amount of wages received previously;

the modes of activity (full-time, part-time;

the collect of a second or third category disability pension (which depends of the state of health and the disability).

Although there is an effective and protective social protection system in France, it is important to remember that a majority of French people with cancer resume work. According to French studies about the occupational situation after cancer diagnosis, activity rates were 65% in 2004 and 69% in 2012, 2 years after diagnosis [13]. These rates are consistent with the average rate observed in international literature reviews [1, 2].

For Carole and Françoise, the financial support of their spouses is essential. The decrease in income necessarily leads to changes in their lifestyle. There is a restriction of needs or desires but they are less concerned with material needs than with their personal well-being.

For Philippe, the fact of having been exposed to asbestos offers him the opportunity to retire before the legal age of retirement. The law prescribes that a person exposed to asbestos can cease to work and retire starting from 50 years old, while earning income up to the date of entitlement to a full pension. Philippe’s financial situation has not changed. The issue of income and its importance in their decisions to stop working was discussed during the interviews. Philippe and Carole responded that this was “not at all important” and Françoise responded that this was “of little importance.” None of the three subjects gave any real importance to the financial question. Carole and Françoise experienced a significant loss of income following their decisions. However, for Philippe, we might have thought that maintaining his level of income would have been a deterrent to returning to work. Indeed, earning as much money not to work as to work could have influenced his choice. His response seems to indicate that this factor had no part in the decision-making process that lead him to give up work.

3.4.2 Participants anticipated difficulties returning to work

Our participants found that their occupational status had changed, either because of their health or because of corporate restructuring. For them, work-return is especially difficult after their circumstances changed, resulting in uncertainty when faced with return to work. All three cited more or less debilitating side effects in their everyday lives, which could have had an impact on their work. Carole and Françoise did not feel either physically or psychologically capable of starting work again. They had lost the work habit.

Françoise also emphasized that initially having to work part-time for medical reasons would have made work less meaningful and created a lack of continuity. This gradual return-to-work would have made her feel extremely frustrated.

Having to rebuild relationships in the workplace was viewed as a further obstacle by participants, even if they had remained in regular contact with work colleagues. Because his old department had closed, Philippe just could not picture himself back at work. It was this uncertainty arising from changes within the company during his absence that thwarted his plans to go back.

3.4.3 Work lost its meaning in this new context

All three had experienced a hiatus in their careers because of cancer. This lack of continuity meant that their professional lives had lost their meanings. Carole now saw her various everyday activities as a form of work in the fullest sense of the word – part of a new approach to life. Being a wage earner and working for a company no longer made any sense.

Before she was diagnosed with cancer, Françoise had entertained the idea of a career change, to inject new meaning into her working life. The prospect of having to accept a less rewarding post affected her self-image. Work meant a great deal to Françoise. However, because of her diminished capabilities after cancer, she did not feel able to go back and preferred to quit employment altogether. Like Carole, her everyday activities now took up just as much of her time as her job used to, and gave her a greater sense of self-fulfilment than returning to work would have done.

As for Philippe, his goal had been to go back to work once the chemotherapy was over, to finish what he had started, even if that entailed helping to close down his own department. The corporate restructuring that took place in his absence frustrated that goal and he completely lost his bearings. He did not see how working in a different department, with new colleagues and in a new role could possibly have any meaning for him. This situation drove him to accept early retirement.

3.4.4 Illness caused repressed affects to surface or served as a catalyst for personal projects

It was only when she fell ill that Carole realized what a toll work had taken and how taxing her job had been. The caring relationship is central to her profession, and the risks of burnout are high. Looking after children in one’s own home blurs the boundary between personal and professional lives. She now wanted to reinforce that boundary, focus on her family, and protect her mental health.

For Françoise, her illness prompted her to make a career change she had long been contemplating, but not in the way she had originally planned. At this stage in her life, she no longer had any career plans or ambitions. She therefore constructed a new identity in which work had no place. Had the cancer struck earlier on in her life, she assumed she would have reacted differently, and would already be back at work. Now, however, it was no longer a priority, and she derived satisfaction from a new set of activities that were helping her to redefine her identity.

Philippe’s case raises another public health issue – that of people exposed to asbestos in the course of their working lives. The cancer brought home to him the possibility of this exposure making him ill. He had not yet developed any symptoms when he was diagnosed with lymphoma, making the news particularly difficult to accept. In this singular context, Philippe developed an etiological theory to make sense of his cancer [28], claiming that the explanation for his cancer lay in his work history. Although the occupational physician failed to establish a causal link between his exposure and the lymphoma, the whole episode nonetheless heightened the perceived risk of contracting asbestos-related cancer and thus added to Philippe’s distress.

3.4.5 Illness disrupted participants’ life trajectories, telescoping the stages together

Surviving cancer accelerated the stages in our participants’ lives – retirement for Carole and Philippe, and quitting employment for Françoise. We found that the way this transition was experienced differed according to gender, with the two women coping somewhat better. All three participants went through two major life events (surviving cancer and retiring or stopping work) within a relatively short space of time, a few years, testing their powers of adaptation and their sense of identity to the full.

Giving up work appeared to be harder for Philippe than for the two women. This unwelcome job loss upset his plans for the future, and he was unable to redirect his psychological investment. We noted a tendency to self-depreciation, as well as a feeling of uselessness and difficulty developing new life skills. Carole and Françoise, by contrast, were able to go through a period of mourning for their professional lives because they successfully invested themselves in new domestic, social and leisure activities. The narcissistic gratifications brought about by the investment in these activities allow them to restore continuity in their lives despite the changes. These activities therefore served the same functions as paid employment had once done. The illness crisis hastened ‘identity work,’ which requires active engagement, intentionality, self-reflection, and effort. Some patients enter a transformative process, of ‘becoming other’ to whom they had been prior to illness [29]. Work contributes to the establishment of identity. When cancer patients are unable to return to work, they invest new daily activities that replace paid work and they construct a new identityout-of-work [30].

By contrast, Philippe gave up all his habitual home improvement and leisure pursuits and remained less active, relinquishing all his former social roles.

3.4.6 Work return plans were abandoned

All three participants had initially intended to go back to work, but changes in their situation or the anticipated difficulty of returning to work led them to abandon their plans. Although the decision was sometimes painful, it allowed them to move on and develop new life skills. Indeed, this is why they appeared to have taken it. It brought two types of benefits:

protecting their physical and/or mental health and enabling them to look after themselves (benefit identified by all three participants);

allowing them to spend more time with their families (specific to Carole), thereby reducing experience of the work-family conflict.

Even though this meant a substantial loss of income for the two women, they, like Philippe, seemed detached from money and material possessions, with fewer needs and desires. All three participants expressed the need to focus on key values such as health, wellbeing and family. After cancer diagnosis, there are changes in the patients’ system of values and life priorities [31].

3.4.7 A feeling of social exclusion

Carole and Philippe played no part in the changes in their employment status. Carole was made redundant on medical grounds. Legally, in France, this measure is taken when the employee’s health is no longer compatible with his or her job, and no other suitable position can be found within the company. Carole’s redundancy, however, made her feel unfit for all forms of employment, even if objectively (on the medical level) this is not the case. Even though she was very active, she did not think she was either physically or psychologically capable of going back to work, probably feeling that she had been rejected by her employer (“I’d been thrown on the scrapheap”). She believed she no longer had any place in the world of work, and rejected it as something that was completely foreign to her. She no longer espoused the values of the corporate world.

Philippe was deeply frustrated by the disappearance of his post while he was on sick leave, as it meant there was no longer any place for him at work. He had told his employer that he wished to return, so the impression that the company was not expecting him back, and that nobody had bothered to think about where he might go when it was restructured made him feel rejected. Philippe had to choose between accepting early retirement and carving out a new place for himself at work in rather unfavourable conditions.

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;

anticipated obstacles;

work-return plans abandoned;

work became meaningless;

emergence of repressed affects or reassessment of personal projects in the wake of cancer;

life trajectory disrupted, with stages telescoped together.

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.

Footnotes

Acknowledgments

The authors are grateful to the “National League Against Cancer”, which backed and funded this doctoral research.

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