How much support should organisations offer to those affected by breast cancer, asks occupational health nurse lecturer Elizabeth Griffiths.
Common threads emerge from a review of the literature on managing breast cancer in the workplace. Some features may apply to other forms of cancer but the primary focus of this article is breast cancer regardless of employment status or treatment regimes.
Since coming to power, the coalition Government has instigated a review of the Cancer Reform Strategy 2007 to focus on the priority of cancer outcomes. Subsequently, in September 2010, the Care Services Minister announced a new campaign, to commence in January 2011, alerting people to the early signs of cancer and focusing specifically on breast, bowel and lung cancer (Department of Health, 2011).
The Equality Act 2010 makes it clear that an individual with cancer is protected by the Act from the point of diagnosis.
To put the condition in context, it is widely reported that breast cancer is the most common cause of cancer mortality among women. Cancer Research UK reported more than 12,000 deaths in 2007 and roughly 44,000 new cases of breast cancer are diagnosed annually. Although recent years have seen much progress in the detection and treatment of the disease, many women of working age are affected, and while prognosis is improving, practitioners aiming to improve the health and wellbeing of the workforce should be instrumental in supporting those affected.
Studies from several countries in Europe have suggested that employment has many positive benefits in the rehabilitation of breast cancer patients (Balak et al, 2008; Fantoni et al, 2010; Tiedtke et al, 2010) but there are also some cautionary messages. A recent systematic literature review suggests that women with breast cancer receive little advice from their medical practitioners about returning to work and that the initial reactions of the employer seem to be crucial. It is also apparent that while work adjustments could help women during treatment and recovery, the organisation could play a much more active and supportive role (Tiedtke et al, 2010), but a culture of ignorance may exist within organisations about the needs of employees diagnosed with cancer. Similarly, there is the concern expressed by employers concerning the ability of such employees to meet workplace demands (Grunfeld et al, 2010).
Roughly 44,000 new cases of breast cancer are diagnosed annually.”
Using electronic databases to search for literature, it is striking even from the title of many articles that a common term adopted for those affected is breast cancer “survivor”. For example, “return to work can be regarded as social recovery and adds to the survivor’s quality of life” (Balak et al, 2008). There is even a publication named the Journal of Cancer Survivorship.
This is not a term commonly assigned to other employees returning to work, for example, following a coronary event. It may also be a misnomer as an initial return to work may not be the end of the story, depending on treatment regimes, prognosis, follow-up, or an individual’s changed perception of the value of employment.
Helpful material from sources including Macmillan Cancer Support’s Managing cancer in the workplace: An employers guide to supporting staff affected by cancer and the EMPLOY Charter Breast Cancer Care’s guide to best practice in the workplace were not referred to in the breast cancer studies addressing employment issues, an example of where evidence in OH practice is likely to come from a variety of sources and may indicate a gap between theory and practice.
Published studies may provide useful data, but it is likely that many employers would turn to other information sources for reference. These sources promote a positive message such as that of “Breast Cancer Care’s guide to best practice in the workplace”, which states that: “Many people with breast cancer will return to work after treatment and some will continue to work during treatment. To retain these employees, they should be treated with understanding. This may in turn contribute positively to overall employee morale and send a strong internal message to other employees that they work for a caring and responsible employer.”
Not all studies dealing with employment issues have focused specifically on breast cancer, but there is a consensus that among the factors that influence women’s decisions about their working life, financial concerns are significant. This is likely to be even more pressing in the current climate.
By far, the most common and distressing ongoing problem is that of fatigue and it is important that organisations target interventions to address this. A population study undertaken in the US (Janz N et al, 2007), investigating the relationship between symptom experience and quality of life, found that in the vulnerable period among women who had completed their primary treatment, fatigue was found to be the strongest predictor of quality of life. This was especially true for younger women according to one study (Connell et al, 2006), which also discovered that breast cancer incidence in women of child-bearing age is increasing, and in this population, support, both emotional and physical, was neither adequate nor appropriate for their age group.
It should also be recognised that fatigue can remain debilitating for a long time, so while this may be considered in any initial return-to-work strategy, the longer-term implications should not be ignored. It would be interesting to know what support OH departments currently offer and for how long.
Returning to work
Looking in more detail at women’s experiences of returning to work, it is clear that organisations have a key role to play in the rehabilitation process, but it is less clear what that might include and what specific interventions or support from occupational health would be most effective.
Factors that aid return to work include job flexibility and workplace support; those that hinder it include ignorance about the disease, physical symptoms and lack of emotional support.”
It has been suggested in one study (Grunfeld et al, 2010) that there may be: (a) a mismatch between expectations and ability to perform as pre-diagnosis; and (b) a discrepancy between the beliefs of the organisation and the individual regarding the process. This is an opportunity for OH practitioners to facilitate constructive dialogue to aid a smooth transition, but what else might constitute a supportive environment? And what about the role of the individual’s line manager? One suggestion might be to look at the condition in terms of disease-related, person-related and work-related factors, so that in any needs assessment all of these aspects are considered.
While not focusing explicitly on breast cancer, some work has been done involving management, OH practitioners and employees (Amir et al, 2008; Amir et al, 2009). It may not be surprising that 60% of OH physicians felt that line managers treated employees with cancer differently to those with other diagnoses. Only one study specifically addresses employees’ support needs that included OH services (Taskila et al, 2006). This was undertaken in Finland, where the coverage of occupational health services is high, at 90%, so cannot be compared directly with the UK. Nevertheless, there are points to note in planning return-to-work strategies. Those studied received most support from co-workers rather than supervisors; nearly half of the women asked needed more practical support from OH and found that the social support offered was inadequate.
It might also be helpful to consider the results of patient experience to formulate a supportive culture where OH practitioners could have the most influence (Tiedtke et al, 2010). Women feared disclosing their illness because it might affect their career development, but some perceived that they could not hide the information from employers indefinitely because of time off needed for appointments. Some women reported that disclosure had positive effects, but for some it was difficult because of the negative reaction of their supervisor or co-workers. Education campaigns raising awareness about cancer to the whole organisation would be of benefit.
Experiences about recovery and return to work are diverse and range from concerns about appearance, especially hair loss following chemotherapy, to feelings of inadequacy and discrimination. Workplace modifications need to be balanced between the wish to return to normality and struggling to cope, especially in stressful jobs. Again, recovery was seen as a long process and even if women looked well this could lead to misunderstanding about the support they needed over a period of time.
Several studies discuss work adjustments that include flexible working, gradual return and changes in tasks, and these adjustments seem to be easier to accommodate in larger organisations. However, there were suggestions that things did not always go smoothly and this could be explained by the attitude of the employer rather than the disease pattern itself. Here, the EMPLOY Charter is very helpful (Breast Cancer Care, 2008).
Conduct needs assessment to cover disease-related, person-related and work-related factors.
Consider fatigue as an important symptom in any intervention.
Acknowledge fatigue may last for a significant amount of time.
Develop education campaigns reaching the whole organisation to improve awareness.
Consider the specific support needs of younger women.
Facilitate constructive dialogue between employer and employee to aid return to work.
Consider co-worker support groups.
Cover specific needs in policy documents.
Co-worker support was seen as an important factor in the studies (Nowrouzi et al, 2009; Johnsson et al, 2010) and it was specifically mentioned by Johnsson that co-worker support may be available from other women who have had breast cancer. This may be a useful strategy to consider in setting up support groups.
In summary, factors that aid return to work include job flexibility and workplace support; those that hinder it include ignorance about the disease, physical symptoms and lack of emotional support (Nachreiner et al, 2007). It is also clear that workplace policies could be much more effective in relation to cancer management at work (Nowrouzi et al, 2009).
By far, the most significant issue to manage in this group of vulnerable workers is that of fatigue and the long-term support needed to manage this. It is also clear that some women with this diagnosis completely re-assess their values in relation to work and because they see the effort involved with working as a struggle, they may choose to leave employment altogether.
Elizabeth Griffiths is an OH nurse lecturer at Brunel University.
Department of Health (2011). “Improving outcomes: a strategy for cancer”. January 2011.
Equality Act 2010.
Cancer Research UK.
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