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Many cancer survivors experience unmet psychosocial needs related to their jobs, and women often fare worse than men in this regard. However, little research exists on ways to assist patients with cancer in preventing or managing common job problems. We conducted focus groups and a survey among 73 women who were employed at the time of presentation of a gynecologic cancer. We compared the findings with existing recommendations and professional standards for occupational rehabilitation. Participants described different cancer-related employment tasks in three time periods: just after diagnosis, during primary treatment, and after primary treatment is completed. The more difficult tasks included communicating with supervisors and coworkers, determining company policies, applying for employer-sponsored benefits, handling finances, managing symptoms on returning to work, finding effective solutions to cancer-related job problems, leaving the job with dignity if too sick or if the job ended, and making career plans. The cancer care team may be able to help meet the psychosocial needs of employed cancer survivors by screening for job concerns, providing information, formulating a return-to-work plan, treating symptoms, consulting with professionals who have employment-related expertise, and giving other forms of assistance.
Patients with cancer rank assistance with employment issues among their most common unmet psychosocial needs. One in seven cancer survivors (14.5%) does not receive enough help for job problems, according to a population-based survey in Pennsylvania.1 Even though 70%–80% of employed individuals eventually return to work after a cancer diagnosis,2-4 the disease imposes new employment-related tasks on the patient, such as supplying the company with medical documentation to justify returning to work at limited duty. Little research is available on the spectrum of new employment-related tasks patients face that are precipitated by a cancer diagnosis, although one study investigated the frustrating administrative tasks required to obtain cancer treatment under an employer-sponsored managed care insurance plan.5 In another study, participants said their need to learn about medicolegal issues, such as family leave and disability options, was not met by their current cancer care.6
Patients with newly diagnosed cancer may experience psychosocial distress not only from intimidating employment-related administrative tasks, but also because they must interact with people at work in new ways. Treatment-related disruption of the work schedule and inability to perform certain duties may reduce productivity and precipitate negative reactions from coworkers.7,8 In a study of social support among 640 cancer survivors who were employed at diagnosis, women fared worse than men in several ways.9 Overall, 13% of men and 20% of women felt they needed more emotional support from their supervisors, while 19% of men and 29% of women felt they needed more practical support from them, such as taking the cancer into consideration when planning work assignments. Coworkers were perceived as somewhat more supportive than were supervisors, but 11% of men and 21% of women felt they needed more practical support from their coworkers. In the group as a whole, one in three cancer survivors felt that more practical support from a professional skilled in occupational health would have been beneficial.9
Oncologists and oncology nurses help patients with employment-related tasks, but whether they feel adequately prepared to assist those who are faced with complex workplace issues has not been studied. Textbooks of oncology and oncology nursing provide information on pertinent legal issues and physical medicine and rehabilitation services,10-13 but include little advice on how to help cancer patients with employment-related needs that do not require formal occupational rehabilitation. Government agencies and community groups can help cancer patients manage temporary disruptions in work, provide social support or financial advice, and assist with reentering the workforce after cancer-related job loss.14,15 Making appropriate referrals to professionals, such as social workers and vocational psychologists, is considered a cancer rehabilitation quality-of-care indicator,16 but in some practice settings, these services are not readily available.
We conducted the present study to identify themes from the employment experiences of cancer survivors that suggest ways in which front-line oncology physicians and nurses could help patients with job issues in the months after diagnosis. Our goal was to collect and analyze qualitative data to define specific employment-related tasks that patients face in the months after learning that they have cancer. We then interpreted these findings in the context of previous research on risk factors for employment problems after cancer diagnosis, and the literature on occupational rehabilitation for patients with cancer, other medical conditions, or injuries. This process suggested a number of clinical recommendations that may help prevent or manage common job problems that occur after cancer diagnosis.
We conducted a qualitative study after obtaining institutional review board approval; all participants provided written informed consent. Findings on the relationships between employment and quality of life have been previously published.17
We recruited to the study women treated for invasive cervical, ovarian, or endometrial cancer (whom we call survivors from the point of diagnosis18). This is a worthwhile group to study because gynecologic cancer survivors are underrepresented in existing employment research.1-4,7-9 In addition, research on women is important because in some studies, female cancer survivors returned to work less often than their male counterparts, suffered greater financial losses, and more often had negative employment experiences.3,9,19 Women were eligible to participate in our study if they worked for pay ≥ 20 hours per week at cancer presentation and their primary diagnosis had occurred ≥ 3 months previously. Most (86.3%) were recruited from gynecologic oncology practices; the rest heard about the study in the community. We obtained participant characteristics from medical records and questionnaires.
We conducted focus groups with four to eight women each; when cancellations or time conflicts resulted in fewer than four participants in a scheduled focus group, we held mediated semistructured discussions instead.20,21 Sessions were conducted face to face or by telephone, were recorded, and lasted 60–75 minutes. The moderator used a standardized interview guide with open-ended questions on employment experiences after cancer diagnosis, people who assisted with job issues that arose because of health problems, and advice or tips about managing employment.17 The moderator listened for selected topics specified during the design of the study, such as needing to modify work tasks temporarily or receiving help with job issues from health professionals. When these topics were mentioned, the moderator asked participants to elaborate.
We analyzed transcripts using NVIVO7 software (QSR International PTY, Ltd., 1999–2006 version, Cambridge, MA) and the text search feature of Microsoft Word (Microsoft Corporation, Redmond, WA). Two observers coded each transcript independently. Participant comments were sorted into broad categories represented by the interview guide questions. We subcategorized quotes in these categories into specific topics within prespecified areas of research interest, such as the role of the health professional, as well as other topics discovered in the data.20,21 The topics were finally categorized into themes about the cancer-related employment tasks that patients may need to accomplish after cancer diagnosis.
A total of 73 gynecologic cancer survivors participated in the study; their diagnoses were ovarian cancer (38.4%), cervical cancer (28.8%), endometrial cancer (26.0%), and more than one primary gynecologic cancer (6.8%). The majority of participants (70.6%) had received their diagnosis within the previous 2 years. Most (80.6%) were 59 years of age or younger. Forty-four women took part in a focus group and 15 participated in a semistructured discussion session.
The women's jobs at cancer presentation were in service industries (20 women, 27.8%), health care (17 women, 23.6%), education (13 women, 18.1%), sales (8 women, 11.1%), manufacturing (6 women, 8.3%), and other white collar occupations (8 women, 11.1%); 1 woman did not report this information. Six (8.3%) of these women were self-employed or business owners, whereas 66 (91.7%) worked for an employer. In the first year after cancer presentation, 5 women (6.9%) were fired, quit to avoid being fired, or were forced out of their jobs by an involuntary reduction in their hours, 13 women (18.1%) left their jobs because of illness, 48 women (66.7%) kept working at the job held at cancer presentation, and 6 women (8.3%) left their jobs because of new priorities, business closure, or moving out of town.
We identified three categories of new job tasks that a patient faces because of a cancer diagnosis, corresponding with time since diagnosis: tasks arising just after diagnosis (Table 1), tasks arising during primary cancer treatment (Table 2), and tasks arising after primary treatment has been completed or when making long-term plans (Table 3).
Just after diagnosis, several women described how helpful it was for their physician to give them an idea of how their jobs would be affected over time (Table 1). Others did not want to “bother” their physician for advice about managing their jobs, and many were at a loss to think of the right questions to ask their physician. Participants noted that it is important to communicate with one's supervisor about changes needed in one's work schedule or duties. Some feared that when a physician contacts the workplace, a patient could lose her job. An important task shortly after diagnosis was learning about the company's policies, procedures, and benefits concerning major illness. Needing to do this quickly added to the stress of receiving a cancer diagnosis. Some employers had personnel who could help with these tasks, such as a human resources professional or company nurse. Some supervisors just wanted to know how long the woman would be out of work, and they reacted negatively to details about the illness. The women commonly shared health information with people at work, which sometimes led to uncomfortable loss of privacy and at other times, to supportive responses from coworkers.
During cancer treatment, being able to work helped women feel they were returning to normalcy (Table 2). They relied on their cancer care team to tell them when they needed to stay off work for health reasons, to prescribe work restrictions, and to help them manage symptoms such as depression. Participants noted that it was important to communicate frankly with their physician when they did not have much sick time available. This helped them avoid being restricted from working when they could not afford a long medical leave. When women returned to work, some were shocked by insensitive remarks made by coworkers. It was difficult to leave with dignity when they lost their jobs or became disabled. A ritual such as a goodbye lunch organized by supportive coworkers helped some women achieve closure after job loss. Many found a new purpose in life after they lost their jobs. For those who continued working, oncology nurses and physicians helped them find solutions to cancer-related job problems, such as those caused by symptoms and schedule disruptions. Cancer motivated many women to follow better health habits, such as being more physically active.
After the completion of primary treatment or when making long-term plans, women undertook additional tasks (Table 3). They reflected on their working life to consider alternative plans that might be more fulfilling. Social support received at work during cancer treatment made women appreciate jobs they had taken for granted. Illness motivated some women to look for jobs that were less physically demanding. Those who lost their jobs involuntarily often needed to find a new job even though treatment was still in progress (Tables (Tables22 and and33).
This study identified a wide variety of employment issues facing the patient with newly diagnosed cancer. These issues ranged from stressful practical matters that could be addressed by advice from the cancer care team to more complex issues for which a referral to a social worker, vocational counselor, cancer rehabilitation service, or community resource may be helpful for some patients. Clearly, there is unmet need for intervention when it comes to cancer-related employment issues.
Few reports of interventions targeting employment outcomes among cancer survivors have been published. Most studies of interventions aiming to improve role function have evaluated overall role function using quality of life instruments that assess activities at work, at home, and in the community within each role function question.17 Clinical trials have shown that physical functioning can be improved using single-component interventions, such as exercise, or multicomponent programs, such as individualized cancer rehabilitation.22,23 Those findings are useful, but they do not specifically address how the front-line cancer care team may assist cancer survivors in preventing or managing common job problems.
In a systematic review of employment-focused interventions among breast cancer survivors, only four studies were identified using a search strategy that included 30 terms to identify interventional research and 29 terms to identify work-related outcomes.24 Three of the studies were reported more than 20 years ago. The remaining study in the review, published in 2000, did not have a control group but noted a 78% rate of return to work among 50 women who received personalized physical and psychosocial rehabilitation services.24
Using the same Medline search terms, we looked for additional examples of work-focused interventional studies for patients with any cancer diagnosis. No controlled trials were identified. Of the two uncontrolled studies retrieved, one described provision of more than 20 individualized vocational services among 1,201 unemployed cancer survivors with disabilities defined as “significant” by state rehabilitation agencies in the United States.15 Approximately half of the cancer survivors who received these services achieved employment. Services associated with an increased chance of becoming employed included vocational counseling, training, and job search assistance.
The other uncontrolled interventional study we retrieved evaluated educational materials.25 Employed individuals in The Netherlands who had recently received a cancer diagnosis (N = 26) were given a leaflet with advice to facilitate successful return to work. The tips included meeting with an occupational physician to draw up a detailed return-to-work plan, and keeping in touch with supervisors and coworkers while on medical leave. Return to work on a limited basis before full recovery was advised. After returning to work, meeting with one's supervisor every 2 weeks was recommended to review progress toward resuming usual job duties. An example of a graduated return-to-work plan was provided. Nearly all (92%) of the patients returned to work within 18 months, and the vast majority (96%) felt it was useful to receive a specific return-to-work plan that they could discuss with their supervisors. All patients kept in touch with their employers during medical leave, and 69% returned to work before full recovery.25
Another interesting study was not an intervention, but it assessed the quality of occupational rehabilitation received by 100 cancer survivors in The Netherlands.16 The quality criteria were similar to the advice in the leaflet study25 and also included whether referrals were made to professionals such as social workers, psychologists, or physiotherapists when indicated. Other quality criteria were discussing with the patient any problems in work relationships, and conferring with a workplace representative if difficulties in return to work occurred.
These quality criteria for cancer care are similar to those recommended for occupational rehabilitation of patients with injuries and medical problems other than cancer. There is moderate to strong evidence that communicating with the workplace and developing a specific plan for temporary limited duty helps patients return to work.26,27 Specific phases have been outlined in the process of return to work among patients with illnesses or injuries.28 In Phase 1, the off-work phase, employment intentions and goals should be discussed with the patient while treatment of the medical problem is instituted. In Phase 2, the reentry phase, the suitability of the job for the patient's current functional limitations is assessed. Temporary work restrictions are recommended, and medical care to improve work abilities is provided.
Risk factors for employment difficulties in the work reentry phase may be within the individual or outside the individual.29 Those within the individual include lack of confidence in one's ability to perform job duties, feelings of shame about the health problem, poor problem-solving ability, and depression. Those outside of the individual include unsupportive coworkers or supervisors, lower autonomy for choosing how to accomplish job tasks, and lack of limited-duty work to facilitate gradual resumption of job tasks.
In Phases 3 and 4, the maintenance and advancement phases of occupational rehabilitation, respectively, the patient's employment goals are reevaluated in the context of any ongoing limitations or changes in the patient's career objectives. A plan for reaching long-term goals is formulated.28 These phases in occupational rehabilitation correspond to the three time periods after cancer diagnosis that were noted in our study (Tables (Tables11--33).
Conceptualizing employment issues that arise after cancer diagnosis as a series of patient tasks that occur at specific times during the survivorship continuum suggests ways in which interventions could be provided to assist patients in managing these tasks. The employment tasks identified in our study (shown in the first columns in Tables Tables11--3)3) are listed in Table 4 and matched with clinical care recommendations consistent with previous literature.
Just after diagnosis, our participants welcomed advice to contact the company's human resources department for help with arranging medical leave and applying for medical benefits. Many of the women had never had a major medical problem and did not know where to turn for this assistance (Table 1). Encouraging appropriate communication with people at work, counseling patients about typical work limitations, determining appropriate employment goals, and formulating a plan for achieving them (Table 4) are key actions for the cancer care team in the off-work phase of rehabilitation.25,26,28 Asking about symptoms is important, since the patient with newly diagnosed cancer may not initiate a conversation about depression, fatigue, and other symptoms that are risk factors for poor employment outcomes.7,30 Psychosocial interventions, pharmacologic therapy, and physical activity may help alleviate these symptoms (Table 4).31-33
Work itself is often therapeutic (Table 2). Patients should not necessarily be symptom-free before return to work is recommended (Table 4).25 Psychosocial support from the cancer team may help patients cope with insensitive remarks or loss of privacy (as exemplified by comments such as, “Everyone in the office knows your parts inside and out,” Table 1 ). Interpersonal relationships at work may be affected by the type of cancer or adverse effects of treatment. Breast cancer survivors in one study received more social support from coworkers and supervisors than did individuals with other cancers.9 Pelvic disorders, such as those experienced by gynecologic oncology patients, may be stigmatizing. This has been found for other pelvic disorders such as infection with human papillomavirus and loss of fertility.34,35 A patient in our study felt stigmatized by urinary incontinence (Table 2). Nursing interventions such as recommending scheduled voiding can help alleviate the embarrassment and anxiety associated with incontinence.36 Some patients will leave their jobs because of worsening illness or another traumatic reason such as being fired (Table 2), and may need help to cope emotionally and to search for a new job if able to work (Table 4).
Oncologists and oncology nurses were the main cancer care team members with whom our study participants discussed work issues. Some women were not sure if employment problems fit within the scope of cancer care, while others described well-defined roles for physicians (Table 1). These roles included recommending when it is medically safe to return to work and prescribing duty restrictions. Poor problem solving is a risk factor for delayed return to work after cancer diagnosis.30 Help from oncology nurses in brainstorming about potential solutions to employment problems was appreciated and often occurred when time was available during administration of chemotherapy (Table 1).
Information resources can be recommended for patients who would like reading materials on employment (Table 4). For example, in the National Cancer Institute's Facing Forward: Life After Cancer Treatment, the section on social and work relationships provides advice on communicating with coworkers and handling problems at work.37 The National Coalition for Cancer Survivorship's Cancer Survival Toolbox has a section on negotiating effectively.38 Both of these resources discuss employment rights and how to handle disclosure of one's cancer history when applying for a job.
When patients need help for job loss and other complex employment issues (Table 3), referral for specialized assistance may be the best solution, especially given the time demands on nurses and physicians in a busy oncology practice (Table 4). Social workers can help patients manage employment disruptions and access community services for families in need.14 Formal cancer rehabilitation services may be useful at various points during or after primary treatment.39,40 Common indications for outpatient rehabilitation include lymphedema, pain, or musculoskeletal dysfunction. Simulation of job tasks may help as patients prepare for return to work. State vocational services may provide training, job placement, and other assistance.23
A limitation of this study is that participants described employment events that happened in the past, which may have been affected by selective recall. On the other hand, the majority of participants (70.6%) had received their diagnosis fairly recently, in the past 2 years. The workplace experiences of women with gynecologic cancer may differ from those of men or women with other types of cancer. However, the cancer-related employment tasks identified, such as managing symptoms on return to work, are likely to be tasks that a broad spectrum of cancer survivors face.
More than 800,000 working-age adults receive a diagnosis of invasive cancer each year in the United States.41 More research is needed to develop interventions to help those who have a difficult time remaining in and reentering the workforce. The findings from this study, interpreted in light of the literature on occupational rehabilitation, suggest a number of specific things the cancer team can do to help patients with employment issues just after diagnosis and during the following months. A practical approach may be to focus on specific job-related tasks that patients face as they adapt to their illness. For complex employment problems, more research is needed to help define the most effective use of referral resources, but the good news is that social services and rehabilitation professionals are available at many cancer centers. For less complex problems, oncologists and oncology nurses may provide valuable advice and support. Chemotherapy recipients are at increased risk for experiencing employment problems,4 and chemotherapy administration sessions may provide an opportunity for discussing or providing information about these issues. Existing patient education materials can be recommended to patients for some cancer-related employment tasks. For other tasks, new educational materials need to be developed and evaluated.
This study was funded by National Cancer Institute grant R03CA110911.
Conflicts of interest: None to disclose.