Goldsmiths Research Online. © The Authors (2006)
In press: European Journal of Cancer Care. Accepted 3 August 2006
Returning to work following cancer: a qualitative
exploratory study into the experience of returning
to work following cancer
Kennedy F., Haslam C., Munir F. & Pryce J. (2006)
F. KENNEDY, Centre of Appearance Research, Faculty of Applied Sciences, University of the
West of England, Frenchay Campus, Bristol, C. HASLAM, Professor, Department of Human
Sciences, Loughborough University, Loughborough, F. MUNIR, Department of Human Sciences,
Loughborough University, Loughborough, & J. PRYCE, Psychology Department, Goldsmiths
College, University of London, New Cross, UK
Abstract
The experience of returning to work following cancer is a largely unknown area of cancer
research. This preliminary study aimed to explore the factors that influence decisions about
return to work either during or after cancer treatment and to identify the important aspects of
returning to work. Qualitative data were collected using individual interviews ( n =19) and two
focus groups ( n =4, n =6), predominantly with breast cancer survivors. Patterns of returning
to work were diverse and a variety of reasons influenced work decisions, including financial
concerns and regaining normality. Participants also discussed their ability to work,
health professionals’ advice, side effects, support and adjustments, and attitudes towards
work. Although the majority adapted well, a few encountered difficulties on their return. It is
evident that more advice is required from health professionals about returning to work, along
with reasonable support and adjustments from employers to ensure that cancer survivors are
able to successfully reintegrate back into the workforce.
Keywords: cancer survivors, return to work, support, adjustments.
2 Returning to work following cancer. Goldsmiths Research Online.
Introduction
Every year approximately 90 000 individuals of working age are diagnosed with cancer and these
figures are expected to rise (Cancer Research UK 2001). However, improvements in early
detection and treatment have resulted in an increasing number of cancer survivors (Spelten et al .
2002). This means that many cancer patients recover and resume the activities of everyday
life during or following treatment, including returning to work. Thus, cancer is not only an issue
for the individuals and their families; but it is also an important issue for employers and the
workplace (Schultz et al . 2002). Furthermore, from 2005 most cancer patients will be
protected from discrimination at work (from the point of diagnosis) due to an amendment of the
Disability Discrimination Act (DDA); employers will be expected to make reasonable adjustments
for individuals living with cancer (Morell & Pryce 2005).
Some cancer patients choose to take time off work during treatment, whereas others continue
part-time or fulltime employment; this may depend on the type of cancer and treatment (Short et
al . 2005), the type of work (Spelten et al . 2002), financial necessity and attitudes towards work
(Mock 1998). Work is important for an individual’s identity and provides a social connection; it
also presents a distraction and enables the person to regain a sense of normality and control
(Peteet 2000). Therefore, returning to work may enhance the patient’s quality of life and be seen
as a symbol of recovery (Steiner et al . 2004).
Recent research confirms that cancer survivors are productive and perform well in the workplace
(Bradley & Bednarek 2002). It is estimated that 62% of cancer patients continue or return to work
during or after treatment (Spelten et al . 2002), but most previous research focuses on the
probability and timeliness of returning to work, rather than identifying how the cancer
experience affects the individual’s quality of work life (Main et al . 2005). Maunsell et al . (1999)
described various work problems that some breast cancer patients encountered such as job loss,
unwanted job adjustments, reduced physical capacity and changes in work relationships.
Another study showed that the experience of work after cancer is influenced by changes in
productivity, social support at work, side effects, economic concerns and feelings about work
(Main et al . 2005).
Some research suggests that cancer survivors find it dif- ficult to return to work after cancer
treatment (Spelten et al . 2002); this can be due to work-related (e.g. work demands), disease-
related (e.g. cancer site, side effects) or person-related factors (e.g. attitudes towards
work). Fatigue is the most common side effect reported by cancer patients receiving radiotherapy,
chemotherapy or recovering from surgery (Mock 1998), and can affect employment by decreasing
work hours, increasing absence and reducing productivity (Messias 1997, cited in Mock
1998). Spelten et al . (2003) found that fatigue levels at 6 months after the start of sick leave
predicted work status at 18 months. However, treatment reactions are highly variable, some
patients experiencing few side effects, whereas others become too fatigued or emotional to work
(Mock 1998).
It was recently emphasized that women who reduced or stopped working after breast cancer did
so voluntarily, possibly due to valuing career goals less, turning attentions to family and
enjoyment of life (Maunsell et al . 2004). Other studies have also conveyed a changed
attitude among cancer survivors, attaching less importance to work than prior to their diagnosis
(Maunsell et al . 1999) and valuing a more balanced approach to life (Main et al . 2005). Thus, it is
important when assessing work return that the context of the individual’s own priorities are
considered, especially as these may have been reconfirmed or altered by the cancer journey
(Steiner et al . 2004). Some individuals may even experience positive life changes 3 after their
cancer (Tedeschi & Calhoun 1995) and this could shape their work decisions (Steiner et al .
2004). Morell and Pryce (2005) reported that patients who were not offered information about
managing work issues associated with their cancer were four times more likely to report that their
working lives had deteriorated because of their cancer. This suggests that cancer patients
require more support from both employers and the medical profession in terms of work-related
3 Returning to work following cancer. Goldsmiths Research Online.
advice, information and adjustments. Little research has explicitly investigated the adaptations in
the workplace or content of work that could ease the returning process for cancer
survivors (Steiner et al . 2004). In essence, when patients are provided with effective support,
emotional and tangible adjustments in their work environment, they are more likely to continue
and manage their illness at work (Morell & Pryce 2005). Others emphasize that
communication between occupational doctors and cancer specialists could be improved
(Verbeek et al . 2003), and more involvement of doctors in requesting flexible working practices
(Chirikos et al . 2002).
The aim of the present study was to explore the factors that influence cancer patients’ decisions to
return to work and the experience of returning to work for cancer survivors.
METHODS
Participants
Twenty-nine participants contributed to this research. Recruitment occurred primarily through
six cancer support groups in the Midlands. All participants had received a cancer diagnosis in the
last 10 years and reported an experience regarding returning to work during or after cancer
treatment. This broad criterion aimed to provide a comprehensive insight into the experiences
faced by cancer survivors, including those who had successfully returned to work, those who
encountered difficulties and those who decided not to return. Nineteen individuals took part in
semi-structured interviews and a further 10 participated in two focus groups ( n =4, n =6). The
choice of method was determined by the number of volunteers from each support group and their
preference for group or individual interviews.
Procedure and data collection
Nineteen face-to-face interviews lasting 20–90 min were conducted to gather participants’
experience of returning to work during or after cancer treatment. Interviews took place at a
convenient location, usually the cancer support group’s regular meeting place, the participant’s
home or workplace. Demographic and cancer-specific details were collected from each participant
and every interview or focus group was tape-recorded. Using a semi-structured interview guide as
a reference, each interview identified the individuals’ reasons for returning, any problems or dif-
ficulties, advice from health professionals, support at work, and work adjustments that helped or
would have helped. Two focus groups ( n =4, n =6) involving 10 women with breast cancer were
conducted. The women in each focus group were members of the same support group so they
were familiar with each other. These discussions lasted around 90 min. Participants were asked to
talk about their experience of returning to work and a facilitator guided the discussion through
five topics; reasons for returning, work after cancer, advice from health professionals, support at
work and work adjustments that helped or would have helped.
Analysis
All interviews and focus group data were transcribed verbatim (maintaining anonymity),
reviewed, and issues of concern that surfaced from the data were noted using the methods
outlined by Silverman (2000) for interview data and by Knodel (1993) for focus group data. These
issues were formulated into emergent major themes using a systematic process of reviewing
transcripts, and text passages were inserted under relevant themes. This was
completed separately for the interviews and focus groups to establish if there were any differences
between the methods; upon review it was evident that the themes were similar from both. The
results are based on thematic analysis and aimed to reveal the patterns and complexity of
cancer patients’ experience of returning to work.
4 Returning to work following cancer. Goldsmiths Research Online.
RESULTS
Table 1 summarizes the demographic profile of the participants. Of the 29 participants, 24 had
breast cancer (one with secondary bone cancer), two had non-Hodgkin’s lymphoma, two had
cancer of the uterus (one also with ovarian and cervical cancer) and one had cancer of the
larynx. The mean age of the participants was 52.6 years, at diagnosis was 47.2 years; 27 were
women and most were married (19). Average time since diagnosis was 59.8 months (range 11–118
months); most participants (26) were employed at the time of diagnosis, and two were full-
time students and one was newly redundant.
Return to work and changes following cancer
Various patterns of work return and changes were experienced following the cancer diagnosis or
treatment. Of the 29 participants, most stated that they temporarily stopped working (24), seven
of these had a short time off for postoperative recovery (3–9 weeks) and worked during
further treatments, 17 continued on sick leave during treatments (3–18 months). However, two
participants did not return to work, and the remaining three participants continued working
throughout; these individuals worked part-time prior to their diagnosis and made no changes
during treatment (except taking a few days off for their operation). Overall, among those who did
return to work (27), 10 returned to the same job and schedule, nine decreased or changed their
hours, two reduced their hours and changed their job role, three changed employer and three
became self-employed.
Factors influencing post-cancer work decisions
Numerous factors influenced participants’ decision about work return following or during cancer treatment; some felt
this was an unconscious decision, while others felt they were ready, were under financial pressure
or wanted to regain normality .
Financial
Many participants spoke about the financial pressure of being off work and almost half (13)
indicated that this was the primary reason for returning. Essentially, they did not have a choice
once their sick pay had expired, as this 61- year-old widowed secretary explained:
I didn’t feel as though I had any choice not to return to work . . . I live alone and I’ve got a
mortgage, and at that time I’d got my youngest son still going through university and so to an
extent he was still a bit dependent.
In contrast, others (5) spoke of how they felt fortunate not having to return to work immediately
or worry financially because they were paid throughout their treatment. A few participants also
mentioned the benefits system, and two participants found the arrangements available very
helpful, especially the ‘permitted work’ scheme, where they were able to work part-time and claim
a portion of their sick pay and incapacity benefit. However, one woman found she could not claim
incapacity benefit because she had not paid enough national insurance contributions and others
felt that applying for these benefits was an insensitive experience:
Fifty page forms . . . having breast cancer seems to somehow not fit within these pages and if I
couldn’t walk, fine, but it glossed over what you’re going through, the fact that you were
knackered and couldn’t do anything.
Normality
Around one-third of participants (10) emphasized that they used work as a distraction from their
illness or treatment to regain a sense of normality. This 44-year-old woman explained:
Going back to work for me is about just being slightly more normal, because going through
cancer isn’t normal, and going back to work . . . going in, enjoying my job, making a difference.
5 Returning to work following cancer. Goldsmiths Research Online.
And my family seeing me going to work and seeing that I’m not at death’s door yet is what I
want.
Several individuals also reported that they enjoyed the social network of work; one 49-year-old
secretary who returned to work while undergoing chemotherapy described that she felt
emotionally better at work.
Physical health
A few participants saw their physical health as influencing their work return. One 44-year-old
woman with non- Hodgkin’s lymphoma retired due to ill health because she was not physically
well enough to return to her job. Conversely, for others returning to work was not a
conscious decision; it was just the natural thing to do once they felt well enough.
Work influence
Responsibility and feelings of loyalty to work was another prominent factor, especially in smaller
workplaces that struggled to cope with the extra workload. Additionally, a couple of participants
described feeling coerced into returning by their workplace:
I was sent to see the occupational health doctor because I’d had such a long time off . . . I
returned to work because he showed me the letter from the manager . . . there was an
extremely strong unwritten, between the lines message, that if I didn’t return to work they
wanted me to finish.
Health professionals’ advice
There was a mixture of experiences regarding health professionals’ advice about work return.
Some (8) described how work issues were never discussed and they were not even sure if their
doctor knew whether they were working or not. One 58-year-old nurse with breast cancer who
underwent chemotherapy and radiotherapy, which reduces the individual’s immune system, was
never asked whether she would be exposed to infection at work. A few explained how their doctor
or specialist gave them specific guidance about their work return. This 57-year-old man described
how this influenced his decision:
I saw my consultant and he said ‘by now you should be feeding yourself back into work’, so it
was really them telling me I was well enough, that the cancer was behind me.
However, many others emphasized how the doctors left them to decide for themselves. Most
understood the difficulty for doctors to give personal advice because individuals react diversely,
but some indicated more advice or information would have helped. This 51-yearold secretary who
had access to a breast care nurse expressed the positive impact this advice and support provided:
She said it’s completely down to the individual as to how you are, some people have a year off
and others, like myself, carry on throughout. It depends on the individual. But they touched on
a lot of the personal side . . . affecting your home life and work life.
Experience of work after cancer
Within the sample, the experience of returning or continuing to work after cancer diagnosis or
treatment was diverse. Productivity varied and many spoke of their employer and colleagues’
expectations.
Ability to work
Some respondents reported that they were able to return to work, function effectively and
perform as they had previously. In contrast, around a third revealed how it was initially difficult to
cope and concentrate; they worried about their reduced capability and felt they were letting the
