Introduction

Each year in the UK there are an estimated 100,000 people of working age who receive a diagnosis of cancer [1]. Due to earlier diagnosis and improvements in treatment survival rates are improving across cancer types. This has led to an ever increasing group of survivors who have a unique set of needs associated with living with cancer and its consequences. Many patients do well following their treatment however the threat of recurrence may remain and some patients may be left with deficits in mobility, cognition and self-care [2]. Furthermore, some survivors may experience ongoing side-effects or negative outcomes from the disease or the treatment received [3] which can continue to impact on everyday functioning, including work.

For cancer survivors, returning to employment may be viewed as a way forward after cancer [4] and a sign of returning to “normality” [5, 6]. In addition, returning to work may be essential for a sound financial future [6] and also has important implications for the workforce at large. Between one-third and two-thirds of surviving cancer patients return to work [7] although for many this may involve a reduction in working hours and/or a change in jobs [8, 9]. However, cancer survivors have also reported a number of negative work-related consequences which include job loss, demotion and enforced task changes within the work environment [10, 11]. Further reported problems include coping with changes in functional ability and negative or misinformed attitudes of co-workers and employers [12]. There is also some evidence to support the notion that trying to manage both the symptoms of cancer and work can lead to poorer psychological and physical health outcomes [13].

A review of the literature identified that a non-supportive work environment negatively predicted return to work among cancer survivors [7]. The type of cancer is also important as there are individual side-effect and disability profiles associated with different cancer types and treatment. For example, survivors of central nervous system, head and neck and lung malignancies have been shown to have a greater risk of not returning to work or of experiencing greater difficulties in the workplace [14, 15]. In addition, breast cancer patients have reported apprehensions about returning to work, related to concerns about the effect of ongoing treatments and concerns about their level of physical fitness [11].

Studies examining the role of the organisation in the return to work of cancer survivors are sparse. However, it is apparent from the literature examining the concerns of survivors that organisations have a key role to play in the transition back to the work environment [6, 16]. It is evident that cancer survivors may experience problems returning to work and have difficulty in achieving a level of productivity similar to their healthy counterparts [17]. However, there are many cases where cancer survivors report a successful and productive return to the workplace [9, 18]. For example, a good employee–employer relationship has been shown to relate to a positive experience of returning to work [6]. However, the support provided from occupational health is often less than desired by cancer survivors. Findings suggest that survivors who have undergone chemotherapy express a greater need for practical support from occupational health on returning to work despite receiving a good level of support from other workplace contacts including their manager and co-workers [19]. There is also evidence from across a range of chronic illnesses that employer-made work adjustments to accommodate functional limitations ensure that employees not only maintain their employment but also that they are better able to manage their work [19, 20]. Little is known about the services provided for cancer survivors or the needs of companies in the return to work process. The aim of this study was to identify the organisational perspective of the return to work of cancer survivors. This survey of organisations focussed on policies and procedures, types of return to work services and beliefs about cancer survivors returning to the workplace.

Method

Ethical approval for the study was obtained from the King’s College London Research Ethics Committee.

Procedure

Companies were identified and their details provided through Electric Marketing, a company providing business lists across a range of sectors. Details provided included the email address, telephone number and postal address of a named contact in human resources/personnel or occupational health of medium to large sized companies. All companies were contacted by telephone to confirm the contact details were correct. Thirty-six companies were not contactable due to incorrect details and were excluded. Between January and April 2007 named individuals within the remaining 815 companies were sent an information sheet about the study, the questionnaire and a freepost envelope. Non-responders were followed-up 2 weeks later with a reminder email and an emailed version of the questionnaire (identical to the postal questionnaire but could be completed electronically and returned as an email attachment). This was followed by a reminder phone call one week later to those companies who had not yet responded.

Materials

An exploratory interview study was conducted with occupational health personnel and HR managers. The semi-structured interview schedule covered details about the employee and their company, return to work policies, the identification of employees in need of assistance with return to work, the existence, coordination and monitoring of rehabilitation services, the organisation’s experience of employees returning to work following illness and lastly case examples of successful and unsuccessful return to work. Nine interviews were conducted in order to reach saturation of the emergent themes which were used as items for the questionnaire. The questionnaire was piloted on eight participants who provided feedback on the items and on the comprehensibility and formatting of the questionnaire.

The questionnaire focussed on the companies’ policies and procedures, return to work services and beliefs about the experiences of cancer patients returning to the workplace. The questionnaire comprised five sections.

Section 1: Company Details

The first section comprised 10 questions focussing on the provision of company details (e.g. type of industry, geographical reach, number of employees, and the individual’s role in the return to work process).

Section 2: Company Experience of Cancer Patients Returning to Work

The second section was formed of three questions that focussed on experience of cancer patients returning to the workplace (e.g. number of employees affected and the number who had returned to work).

Section 3: Return to Work Policies and Procedures

The third section comprised 10 questions that focussed on the company’s return to work policies and procedures (e.g. policies that had been implemented, role of occupational health, how policies were developed and reviewed).

Section 4: Return to Work Services

The fourth section focussed on the return to work services offered to patients and comprised eight questions (e.g. circumstances under which return to work services are initiated, range of services provided and provision of information).

Section 5: Beliefs about Cancer and the Return to Work Process

The final section focussed on beliefs about cancer and the return to work process. Respondents were asked to indicate how important they thought each of a set of factors was in relation to the successful rehabilitation of employees who had been ill due to cancer (e.g. “the employee’s attitude towards work”, “ability to perform the job physically”). Answers were provided on a five point scale (“not at all important” to “very important”).

Data Analysis

The descriptive data are presented as the percentage of the total sample. The data were cross-tabulated (Chi-square) with specific respondent characteristics which included personal experience of cancer, whether they were able to report the number of employees within their organisation diagnosed with cancer, the geographical reach of their company (regional, national or European/global) and whether or not they were involved in the implementation of return to work policies. Only the significant findings are presented in the text.

Results

Sample Characteristics

Of the 815 questionnaires sent out 252 were returned completed (a response rate of 31%). The majority of those who did not complete the survey cited lack of time or company policy as the reason for non-completion. There were no significant differences between the responders and non-responders in terms of job role or organisational sector. About 69% of the questionnaires were returned by post and the remaining ones by email. As shown in Table 1, the majority of respondents were based in human resources or personnel departments (71%), with the remaining based in occupational health departments (21%), health and safety departments (4%) or other departments (4%). The average length of time that the respondents had been employed in their role was 6 years (SD 5.31). The largest industry sector employing respondents was health and social work (31%), followed by manufacturing (16%), wholesale and retail trade (10%), public administration and defence (8%) and education (7%). Over one-third of the companies operated on a national scale (36%), followed by global (29%) and regional (23%). The remaining companies described themselves as European (3%) or other (9%). The majority of the companies employed 1,000 or more staff (89%). In addition, 76% of respondents had a friend or relative who had been diagnosed with cancer, 69% personally knew someone within their company who had been diagnosed with cancer and 6% of respondents had been diagnosed with cancer. There were no significant differences between the responses of those who reported a personal history of cancer (either self, family member or friend) and those who had no personal history of cancer.

Table 1 Characteristics of the study sample
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Experience of Cancer and Return to Work

Half of the respondents (48%) were unable to provide information about the number of employees within their company who had been diagnosed with cancer in the past 12 months. Reasons given included not holding central records of the reason for absence and not recording individual illness type among their absentee statistics. There were no significant differences between companies who were able to provide information about the number of employees diagnosed with cancer and those that could not in terms of the personal experience of cancer, the size of the company, the industry sector, the department the respondent worked in and whether the respondent was involved in the implementation of return to work policies. Companies operating on a European or global scale were more likely to record whether an employee had been diagnosed with cancer than were companies operating within a smaller geographical range (χ2 = 15.127, df = 2, P < 0.001). Among those that did hold this information the mean number of employees affected by cancer in the past 12 months was 6 (SD 7.50). The mean number of employees who had completed treatment within the last 12 months was 3 (SD 4.43) and the mean percentage of those who had completed treatment and then returned to work as 73% (SD 32.94).

Return to Work Policies and Procedures

Respondents were asked about their role in the return to work process. About 69% reported being involved in the creation of return to work policies and 76% described themselves as involved in the implementation of the policy. About 70% reported having contact with employees during their absence from work and 70% reported contact with employees during the rehabilitation process. Over one-third of participants were responsible for assisting employees back to work at a site specific level (35%), 28% at a regional level and 26% at a national level.

About 75% of companies had implemented a return to work policy but only 2% reported having implemented a cancer specific policy. Policy development was reported to have been informed by the Disability and Discrimination Act (1995) (77%), the Disability and Discrimination Act (2005) (72%), advice from internal or external occupational health departments (74%), Health and Safety guidelines (62%), medical reports (46%), advice from the Advisory, Conciliation and Arbitration Service (ACAS) (27%) and advice from Department of Work and Pensions disability advisors (14%).

Respondents were asked how their company would identify an employee who was struggling following returning to work. The majority indicated that this would be identified through a report from the employee’s line manger (87%), followed by a report from the occupational health department (62%), through poor performance at work (49%), through not meeting targets or objectives (41%) or through reports from colleagues (35%). Companies operating on a European or global scale were less likely to respond to reports from a colleague than were companies operating within a smaller geographical range (χ2 = 7.309, df = 2, P < 0.05).

Respondents were asked how frequently return to work policies were reviewed and 3% responded that these were not reviewed. In 37% of cases there was over a year between reviews, 36% were reviewed at least yearly and 24% on a case by case basis. One-third of companies (32%) who had implemented a return to work policy reported that they did not measure the effectiveness of the policies. Reported methods of measuring the effectiveness of return to work policies included length of absence statistics (54%), occupational health reports (45%), percentage of employees returning to the workplace (36%), employee feedback (34%) and job performance on return (25%). Only 8% of respondents reported that they measured the cost effectiveness of return to work policies.

Return to Work Services

It was most common for return to work assistance to be implemented after an absence of 5–6 weeks (29%), followed by an absence of 3–4 weeks (30%) and in 10% of cases an absence of 1–2 weeks. Other situations where return to work assistance would be implemented included the employee suffering from a particular illness (64%), the employee requesting assistance (62%), a request by the occupational health department (62%) and a colleague requesting assistance (14%). Respondents who were able to provide figures regarding the number of employees in their company diagnosed with cancer were more likely to state that a specific illness would lead to the implementation of return to work assistance (χ2 = 6.010, df = 1, P < 0.05). Respondents who reported being involved with the implementation of their company’s return to work policy were more likely to state that a request from an employee would lead to the implementation of return to work assistance (χ2 = 4.957, df = 1, P < 0.05).

The most common format for return to work services (Table 2) was phased returns (99%), followed by changes in work duties (98%), workplace adjustments (96%), physical environment changes (e.g. equipment) (95%) and informal telephone communication with the employee during absence (94%). Respondents who reported being involved with the implementation of their company’s return to work policy were more likely to state that collaborative goal setting was used in the return to work process (χ2 = 13.538, df = 2, P < 0.01) and that training or retraining would be provided to employees (χ2 = 20.329, df = 2, P < 0.001). In addition, 38% of respondents reported that their company provided employees with guidelines or an information booklet on the company’s return to work policy or the rehabilitation services offered.

Table 2 Percentage of respondents indicating that the return to work assistance offered by their company utilised each format
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Participants were asked who was involved in assisting employees returning to work. About 99% reported that human resources were involved, 92% reported that the line manager was involved and 85% reported that occupational health was involved. Only 8% of respondents reported not having access to occupational health assistance to inform or oversee their return to work policy. For over half of respondents (53%) this assistance was available within their company and for 39% occupational health assistance was available externally.

Respondents were asked if they thought that their company would benefit from additional advice or support regarding the return to work of their employees. About 62% indicated that they would benefit from information about where patients could be referred to for emotional support, 58% indicated an interest in information on financial issues and support, 48% indicated that guidelines on returning to work too soon would be useful (in terms of how to recognise a person struggling once they have returned to work and the supportive options that could be applied) and 30% indicated that information on guidelines protecting the company from prolonged absence would be of use.

Beliefs about Cancer and Return to Work

The respondents were asked to indicate how important they thought each of a set of factors was in relation to the successful rehabilitation of employees who had been ill due to cancer (Table 3). The majority of respondents (95%) rated the employee’s attitude towards work as important or very important. The next most important factor was the employee’s emotional ability to perform the job (94%), followed by agreement between the employee and employer over any changes in hours or duties (91%). The factors receiving the lowest ratings were practical barriers (67%) and other employees’ attitudes towards the person returning to work (72%). Respondents who reported being involved with the implementation of their company’s return to work policy were more likely to state that the employee’s attitude to returning to work was an important factor in the return to work process (χ2 = 13.722, df = 2, P < 0.01).

Table 3 The percentage of respondents rating each factor as important or very important to the successful rehabilitation of employees who have been ill due to cancer
Full size table

Discussion

This study aimed to identify the organisational perspective of the return to work of cancer survivors. The survey focussed on the companies’ policies and procedures, their return to work services and beliefs about cancer survivors returning to the workplace. It was uncommon for companies to have a cancer specific return to work policy and also almost half of companies were unable to provide statistics for the number of employees diagnosed with cancer and thus they were unable to provide return to work statistics for these employees. Reasons included not holding central records of the reason for absence and not recording individual illness type among their absentee statistics. Although this is reasonable given the large number of employees within these companies (89% employed over 1,000 people) it raises the concern that many medium to large sized organisations are not collating information that could be used to develop and improve their return to work services for cancer survivors. It is estimated that around 73% of working-aged cancer survivors are employed by medium to large organisations [13].

Another important finding was that nearly one-third of organisations made no attempt to measure the effectiveness of their policies on return to work which is against the recommendations of good practice [21]. Furthermore where an attempt was made to review the effectiveness of return to work policy, half of organisations measured the length of absence which could be considered a measure of health rather than adequacy of policy. This might suggest that organisations might benefit from information and advice on monitoring and reviewing their policy frameworks.

The organisations in this study indicated several areas where they felt they needed additional support and these included where to refer cancer survivors for emotional support and issues around financial advice. Few employees are offered counselling on returning to work to deal with emotional issues relating to residual concerns following cancer [13] and our results suggest that few employers feel equipped to provide advice about such services. The organisations also expressed an interest in receiving information about identifying and supporting employees who return to work too soon. There is evidence to suggest that survivors who try to return to work too soon may experience greater fatigue [6, 13] and therefore in some cases there may be a mismatch between cancer survivors’ expectations of returning to work and the actual process. Some survivors may feel distressed that they are not able to perform at their pre-diagnosis level [16]. Returning to work too soon can also impact on the organisation in terms of additional periods of sick-leave, absenteeism and in some cases staff may choose to leave the organisation. Therefore some organisations may have an interest in ensuring that survivors take adequate time to recover and that they return to work at a pace that takes account of residual symptoms, including fatigue. However, survivors who return to work and experience difficulties would benefit from supportive services to enable them to continue working [22].

This study also highlighted the key role of the line manager in identifying employees who were struggling following returning to work. The key role of the supervisor in the return to work process has been highlighted previously [23]. However, less than two-thirds of cancer survivors report disclosing their cancer to line managers on returning to work [13] which suggests that many line managers may be unable to make informed decisions regarding cancer survivors performance or to make tailored adjustments to the workplace to ensure that needs are met. These findings together suggest a need for equipping cancer survivors with the skills to enable them to disclose aspects of their diagnosis and treatment which will ensure employers have the required information to respond appropriately to the cancer survivor’s needs.

A wide range of services were reported to be available to employees returning to work. A number of these involved work-place adjustments, such as changing work duties or the provision of specialist equipment. The majority of companies also reported that they provided phased returns for employees returning to the workplace. Phased returns offer the individual the opportunity to return to work gradually with a structured reintroduction of duties. Such an approach can help boost well-being and confidence [19]. However, the findings of this study are at odds with the reports of cancer survivors returning to the workplace. This study asked respondents to state the services that were available and did not record statistics on how frequently these services were provided. Only one-third of the organisations surveyed provided booklets for their employees that outlined return to work services and procedures. Therefore it is possible that cancer survivors do not have the relevant information available to them in order to make an informed decision about how to return to work or to initiate discussions regarding the type of services that would be useful for their personal return to work plan. Furthermore poorer work-related outcomes have been observed among cancer survivors who were not offered information about how to manage cancer-related work issues [13].

Respondents indicated that they thought a number of employee-related factors were key for a successful return to work including the employee’s attitude and their emotional ability to perform the job. Previous research has shown that physical symptoms including fatigue and nausea and employee attitude such as feeling bored or useless impacts on hours worked and performance on return to work [24]. The factors that they thought were of least importance were practical barriers and colleagues’ attitudes towards the person. However, these two areas have been highlighted previously as key areas of concern for cancer survivors when returning to work [12]. Although the data were collected from different samples at different time-points the finding does highlight the need for good communication between employer and employee during the return to work process to ensure that the concerns of both parties are understood.

Although the response rate for this study was low and this has implications for the application of the findings the response rate line with other surveys of organisations [25]. Attempts were made to improve the response rate by checking the details of the sample prior to sending out the questionnaires and also by ensuring that the questionnaire was attractive and simple to complete [26]. A further limitation of this study is that three-quarters of respondents reported that they had a friend or relative who had been diagnosed with cancer. This may be the result of response bias in that respondents who completed the survey may have been more motivated to take part due to their experience of cancer. In addition, there is the possibility that the respondents to this survey were employed by companies who were more positive towards return to work procedures. Finally, this study focussed on medium to large organisations and therefore may not reflect the needs or experiences of small organisations who may feel a greater effect from the long-term absence of an employee.

Overall this study suggests that organisations report a serious commitment to be supportive of cancer survivors returning to the workplace and that they potentially offer a range of return to work services to aid these employees. However, this study did not address the respondents’ knowledge of cancer and its treatments which may have influenced their beliefs about returning to work following cancer. However, over three-quarters of respondents had some personal experience of cancer (either self, family member or friend) and there were no significant differences between the responses of this group and those who reported no personal history of cancer.

The findings have several implications for practice. Most employers aim to provide support to cancer survivors returning to the workplace. However, employees may experience difficulties due to residual symptoms such as continuing fatigue or as a result of unrealistic expectations about returning to full employment soon after treatment has completed. Employers could support the employee by undertaking a job analysis to identify aspects of the role that may pose potential difficulties and through the formulation of a clear return to work plan that could incorporate a phased return to the workplace if this is appropriate. It is also important that organisations provide clear information to employees regarding the support they can provide so that they feel supported by their employers and are equipped to manage cancer related work issues.

Further research is needed to determine whether employees are adequately informed of such services and whether a lack of information provision and clear communication could explain the discrepancy between the problems reported by cancer survivors and the comprehensive services that organisations report to offer. Finally, interventions need to be developed that target not only the symptoms experienced by patients and their beliefs and expectations but also that target the skill base of managers within organisations who need to be able identify potential problems in the return to work process and provide support to cancer survivors returning to work.