Women's Health Issues 24-2 (2014) e197–e204

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Original article

Strategies Used by Breast Cancer Survivors to Address Work-Related Limitations During and After Treatment Joanne C. Sandberg, PhD a,*, Carla Strom, MLA b, Thomas A. Arcury, PhD a a b

Department of Family and Community Medicine, Wake Forest School of Medicine, Medical Center Boulevard, Winston-Salem, North Carolina Wake Forest School of Medicine, Comprehensive Cancer Center, Medical Center Boulevard, Winston-Salem, North Carolina

Article history: Received 20 August 2013; Received in revised form 18 December 2013; Accepted 19 December 2013

a b s t r a c t Background: The primary objective of this exploratory study was to delineate the broad range of adjustments women breast cancer survivors draw upon to minimize cancer-related limitations at the workplace. The study also analyzed whether survivors used strategies to address work-related limitations in isolation or in combination with other strategies, and whether they used formal or informal strategies. Methods: Semi-structured, in-depth interviews were conducted with 14 women who were employed at the time of diagnosis of breast cancer and who continued to work during treatment or returned to work. Interviews were conducted 3 to 24 months after diagnosis. An iterative process was used to systematically analyze the data (the transcripts) using qualitative methods. Findings: Participants who worked during or after treatment adjusted their work schedule, performed fewer or other tasks, modified or changed their work environment, reduced non-work activities at the workplace, used cognitive prompts, and acted preemptively to make work tasks manageable after their return to work. Survivors used multiple adjustments and drew upon both formal and informal tactics to minimize or prevent cancer- or treatment-related effects from negatively affecting job performance. Conclusions: Knowledge about the broad range of both formal and informal strategies identified in this study may enable health care and social services providers, as well as cancer survivors and employers, to identify a wide range of specific strategies that may reduce the negative effects of work-related limitations in specific work settings. Insights gained from this analysis should inform future research on work and cancer survivorship. Copyright Ó 2014 by the Jacobs Institute of Women’s Health. Published by Elsevier Inc.

Substantial numbers of women face the challenge of working after the diagnosis and treatment of breast cancer. Approximately 60% of the 225,000 women diagnosed with breast cancer each year in the United States are less than 65 years old (National Cancer Institute, 2010); and 71% of women ages 25 to 64 are employed or looking for work (U.S. Census Bureau, 2010; U.S. Department of Labor, 2012). A majority of cancer survivors employed at the time of diagnosis return to work, with the percentage varying by education and ethnicity (Blinder et al., 2012; Bradley, Neumark, Luo, & Schenk, 2007; Short, Vasey, & Tunceli, 2005). Many survivors, both of breast cancer and many other cancers, experience side effects and late effects

* Correspondence to: Joanne C. Sandberg, PhD, Department of Family and Community Medicine, Wake Forest School of Medicine, Medical Center Boulevard, Winston-Salem, NC 27157-1084. Phone: (336) 716-4308; fax: (336) 716-3206. E-mail address: [email protected] (J.C. Sandberg).

resulting from cancer treatment that negatively affect their capacity to perform work-related tasks (Oberst, Bradley, Gardiner, Schenk, & Given, 2010). Despite the substantial number of survivors working during and after cancer treatment, detailed knowledge about workplace modifications and accommodations (MAA) to minimize limitations caused by cancer and its treatment is scant. Examination of work-related experiences of women breast cancer survivors will enable us to address how MAA may reduce work-related limitations among breast cancer survivors, and provide insight into strategies that can be useful for survivors. Work-related challenges experienced by women cancer survivors vary substantially and may be affected by diagnosis, type of treatment, and work tasks (Boykoff, Moieni, & Subramanian, 2009; Breckenridge, Bruns, Todd, & Feuerstein, 2010; Kennedy, Haslam, Munir, & Pryce, 2007; Lindbohm et al., 2012; Munir, Burrows, Yarker, Kalawsky, & Bains, 2010; Munir, Yarker, & McDermott, 2009; Nachreiner et al., 2007; Oberst et al., 2010; Ohguri et al.,

1049-3867/$ - see front matter Copyright Ó 2014 by the Jacobs Institute of Women’s Health. Published by Elsevier Inc. http://dx.doi.org/10.1016/j.whi.2013.12.007

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2009; Tamminga, de Boer, Verbeek, & Frings-Dresen, 2012; Taskila, De Boer, van Dijk, & Verbeek, 2011; Taskila & Lindbohm, 2007). Physical limitations, such as fatigue, difficulty stooping or kneeling, and restrictions on lifting items, make it difficult for some survivors to perform necessary work tasks (Kennedy et al., 2007; Main, Nowels, Cavender, Etschmaier & Steiner, 2005; Nachreiner et al., 2007; Oberst et al., 2010; Tamminga et al., 2012; Taskila, Martikainen, Hietanen, & Lindbohm, 2007). Cancer-related cognitive limitations at work include distractibility, reduced efficiency and speed, memory problems, and difficulty making decisions (Boykoff et al., 2009; Kennedy et al., 2007; Main et al., 2005; Munir et al., 2009; Oberst et al., 2010; Tamminga et al., 2012; Taskila et al., 2007). Although research has examined several discrete work outcomes and a limited number of MAA used after cancer diagnosis and treatment (Amir, Neary, & Luke, 2008; Bradley, Bednarek & Neumark, 2002; Bradley, Neumark, Bednarek, & Schenk, 2005; Drolet et al., 2005; Kennedy et al., 2007; Johnsson, Fornander, Rutqvist, & Olsson, 2010; Lindbohm et al., 2012; Main et al., 2005; Pryce, Munir, & Haslam, 2007; Short, Vasey & Moran, 2008; Short et al., 2005; Tamminga et al., 2012; Taskila & Lindbohm, 2007), detailed knowledge about the range of specific MAA used by women cancer survivors in the workplace is scant. Torp, Nielsen, Gudbergsson, and Dahl (2012) report on four types of worksite adjustments used by employed adult cancer survivors: 1) Change in number of hours worked per week, 2) performance of other or fewer tasks to reduce physical strain, 3) performance of other or fewer tasks to reduce mental strain, and 4) access to aids or physical changes in the workplace. Our findings build on analyses conducted by other researchers, including Torp and colleagues’ (Kennedy et al., 2007; Tiedtke, de , Christiaens, & Donceel, 2010; Torp Rijk, Dierckx de Casterle et al., 2012) by providing more detailed knowledge regarding diverse strategies women breast cancer survivors use to manage work limitations. Furthermore, we expand the scope of work to include tasks required as part of educational programs associated with their current job. Research examining the importance of formal and informal mechanisms that reduce work–family conflict (Behson, 2005; Hochschild, 1997; Wharton, Chivers, & BlairLoy, 2008) suggests that both types of strategies may enable women survivors to manage cancer-related work limitations. The primary objective of this study was to delineate the broad range of adjustments women breast cancer survivors draw upon to minimize cancer-related limitations at the workplace. The secondary objective was to analyze 1) whether strategies are used in isolation or in combination and 2) whether formal or informal strategies are used. The findings from this exploratory pilot study of a small convenience sample of women cancer survivors will set the stage for larger, more detailed research studies that will analyze survivors’ use of MAA. Methods Design Research team members conducted semi-structured, indepth interviews with women diagnosed with breast cancer within the past 3 to 24 months and employed at the time of diagnosis. Interviews explored experiences related to employment, including strategies to reduce the negative impact of treatment-related work limitations during treatment or after treatment. Open-ended interviews were an appropriate data collection method given the limited amount of research in this

area. In-depth interviews resulted in detailed responses and enabled participants to elaborate upon actions and attitudes that cannot be captured through surveys. Sample Participants were recruited from North Carolina during 2010 and 2011. Inclusion criteria were 1) diagnosis of breast cancer within the past 3 to 24 months, 2) employed at the time of diagnosis, and 3) between the ages of 25 and 55 (inclusive) at the time of interview. A purposive sampling method was used to include participants with variation in age, background, and work experience. We recruited women with diverse educational backgrounds to include women with varied occupations. Purposive sampling is an effective and appropriate strategy to increase sample variability, thereby enabling investigators to examine the breadth of experiences among women with diverse sociodemographic characteristics (Berg, 2007; Lofland, 2006). Several strategies were used to recruit participants. Flyers containing study information were posted in public libraries and community and health care centers. We contacted oncologist patient navigators, and provided them with the flyer. We contacted and attended support groups, where information was provided to women. Paid advertisements were placed in a local newspaper’s special insert, an African-American community newspaper, and a mailing that identified opportunities to participate in research studies. We did not approach individual women, and therefore had contact only with women who expressed interest in participating. Data Collection An interview guide ensured each interview addressed the same major topics: 1) job responsibilities before and after diagnosis and treatment, 2) ability to perform work tasks, and 3) MAA that survivors, their co-workers, or supervisors implemented to address work limitations during or after diagnosis and treatment. Table 1 provides a list of interview guide topics. The interview questions were designed to elicit detailed responses, and probes were used to encourage additional descriptions of participants’ experiences. Two women who provided permission to contact them later and either had not been working or were near the beginning of their treatment at the time of the initial interview were re-interviewed. These additional interviews addressed the survivors’ work experiences during the period between their first and second interviews. Interviews were conducted by two authors in person and audio-recorded with the participants’ consent. The interviews were transcribed and checked for accuracy; participants’ names were removed and replaced with unique identifiers. Participants received $20 and $10 cash incentives, respectively, for completing the primary and follow-up interviews. Participants provided written informed consent. The research was deemed compliant with Health Insurance Portability and Accountability Act and approved by our institutional review board. Analysis An iterative process was used to systematically analyze the data (i.e., transcripts) using qualitative methods. Based on knowledge of the research literature and an initial review of the transcripts, a code book was created defining our primary codes or “tags.” Major categories included 1) required work tasks,

J.C. Sandberg et al. / Women's Health Issues 24-2 (2014) e197–e204 Table 1 Topics Addressed by Interview Guide Background information Overview of job(s) held at time of diagnosis, including description of job tasks Overview of period during and immediately after diagnosis and treatment Experience of being diagnosed in context of work Treatments received Time away from work Factors affecting return-to-work process, continuation of work during treatment, or termination of job(s) Workplace experiences during treatment period (if appropriate) and shortly after returning to work (if appropriate) Jobs tasks performed and ease or difficulty of performing tasks compared to performance of tasks at time of diagnosis Changes in assigned work tasks or manner in which tasks performed Work-related challenges, including physical, cognitive, and socio-emotional Probe to see what modifications or accommodations were made to address challenges, if not previously addressed. Workplace social support If appropriate, workplace experiences several months after returning to work or completing treatment (Same subtopics as presented above, but focus on recent time period) Self-care strategies Overall assessment, recommendations

2) types of work-related challenges after diagnosis (e.g., cognitive, physical, and social-psychological), and 3) MAA used to address work-related challenges. Two team members marked text associated with each code. Codes were electronically attached using ATLAS.ti. Discrepancies were addressed and resolved, and code descriptions clarified. Sections of text sharing the same major codes were compared across transcripts. Additional subcategories specifying types of workplace adjustments were developed after careful review of the quotations linked with the MAA code. The strategies were noted and exemplary quotations for each strategy type were identified, along with the participant identification number. Codes were created to distinguish between formal and informal implementation of work adjustments. Formal tactics included those recognized by the survivor and supervisor (or client) as changed expectations regarding work performance or altered work schedule. The provision of assistive devices by the employer to enable survivors to perform work tasks adequately was considered a formal tactic, even if the expected tasks or the speed may have changed as part of the adjustment. Informal MAA did not bring to the forefront formal guidelines to delineate workplace expectations. Informal tactics could be implemented without supervisor/client knowledge or approval. Team members repeated the process of assigning the codes to relevant text and resolving discrepancies. Socioeconomic information was collected on participants, including age, self-reported racioethnicity, relationship status, and educational attainment. Employment characteristics (e.g., self-employed), number of jobs held, and school enrollment at diagnosis were also recorded. The in-depth interviews obtained information regarding the treatments (surgery, chemotherapy, radiation therapy) participants had or were receiving. Sample size precluded the possibility of analyzing the association between specific treatments and work-related limitations and strategies. Results The analysis was restricted to the 14 women who worked for pay after treatment had begun and had returned to work before

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at least one interview. These 14 women represented diverse backgrounds: Nine identified as White, four identified as African American, and one indicated she was multiracial (Table 2). Eleven were between the ages of 45 and 55 inclusive at the time of the initial interview. Six participants reported they had completed a bachelor’s degree or higher. At the time of diagnosis, nine women were married or cohabiting, three survivors held more than one job, and two were students. Thirteen survivors had cancer surgery before the interview, and 10 and 6 reported they were undergoing or had completed chemotherapy or radiotherapy, respectively, at the time of the last interview. Survivors reported experiencing physical, cognitive, and psychosocial challenges at work attributable to breast cancer and treatment; the severity of these challenges varied widely. Most reported physical limitations, particularly fatigue, pain, and discomfort; many noted cognitive challenges. Some women mentioned problems with memory. Others provided less distinct descriptions, such as stating their minds were not as “sharp” or they felt “foggy.” A few indicated they experienced psychosocial challenges, such as increased anxiety or self-consciousness, in the workplace. Most survivors reported some aspect of their work was adjusted during or after treatment, either on their own or by a supervisor or co-worker(s). A few women initially indicated they neither needed nor received any workplace adjustments beyond Table 2 Participant Characteristics Sociodemographic Information

N

Age at time of diagnosis (y) 1 3 School enrollment at time of diagnosis Non-student 12 Student 2 Treatment information Had surgery by time of last interview Yes 13 No 1 Had chemotherapy by time of last interview Yes 10 No 4 Had radiation by time of last interview Yes 6 No 8 Time between diagnosis and (last) interview (mo) 6 4 7–12 5 13–18 3 19–24 2

% 21 79 64 29 7 7 14 36 43 63 36

93 7 79 21 86 14

93 7 71 29 43 57 29 36 21 14

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time off for treatment. However, subsequent responses to probes indicated that adjustments had been made during or after treatment for some of these women. Despite the implementation of multiple strategies, several participants reported they continued to experience difficulty performing tasks. One participant who returned to work for the same employer reported no adjustments had been made by her employer, despite the need. This woman quit her job owing to substantial negative health effects caused by performing required work tasks. Work Adjustments Made During or After Treatment Participants reported six strategies to address actual and potential limitations at work: Modifying work schedules, performing fewer or other work tasks to reduce physical strain, modifying or changing their work environment, reducing nonwork activities during the workday to minimize physical exertion, using cognitive prompts, and acting preemptively to make tasks manageable after their return (Table 3). Modify work schedules The strategy survivors reported most frequently was to modify their work schedules by working fewer hours per day or days per week. Modified schedules, such as a 4-day workweek, enabled survivors to attend regularly scheduled medical appointments, including chemotherapy treatments. Many participants reduced their hours during or after treatment, often in response to fatigue or other physical limitations associated with cancer or its treatment. For some, a modified schedule included leaving at the official end of the workday rather than working late. All survivors working more than one job at diagnosis reported quitting a parttime job. Those combining school and work at the time of diagnosis implemented diverse strategies. One reduced the number of work hours and academic course load. Another extended the length of her medical leave from work to encompass her radiation treatments while completing academic requirements. Finally, a few modified their schedules during the workday by taking breaks to reduce treatment-related physical discomfort. Perform other or fewer work tasks Some survivors reported changing the type and quantity of tasks performed to address physical limitations. The participants who made substantial shifts in job duties in response to treatment-related side effects focused on tasks requiring fewer physical demands. Several participants were able to reduce their workload, often to a limited degree. Changes in the types of job tasks performed or overall workload occurred through different mechanisms. Participants who reported discretion over some work tasks could limit job responsibilities, reduce workload, or modify tasks. For example, one participant delegated multiple tasks to co-workers and focused on desk-based tasks, avoiding more physically demanding ones. Another participant, whose job required local travel, rode with co-workers to reduce physical effort. For some, workload reductions or job task changes directly involved supervisor action. According to participants, these adjustments were a direct response to physician recommendations, knowledge about cancer and treatment side and late effects the survivor obtained elsewhere, or supervisor’s observations of their capacity to perform physically demanding tasks. Co-worker and student assistance was often perceived by survivors as temporary; co-workers and students were simply “helping out.”

Several survivors noted changes in cognitive function, reporting they were not as mentally sharp as before their diagnosis. However, most did not think their cognitive changes negatively affected their work. A few survivors noted distinct memory problems, such as forgetting people’s names, words, or the content of brief, work-related conversations. None of the participants reported their workload or assigned tasks were modified or changed to accommodate cognitive challenges. The participant who reduced the number of credit hours in her degree program did not attribute the need to decrease hours to cognitive limitations, although she did state that taking medication that reduced her mental clarity challenged her ability to complete coursework. Modify or change work environment A few participants changed their work environment by working from home or modifying their work station to reduce physical job demands. Changes to survivors’ work stations at their usual workplace were often minimal (e.g., rearranging desk items). A few reported they worked at home while recovering, sometimes in addition to performing tasks onsite. Working from home reduced the physical effort required to travel to and from their regular workplace, and allowed them to wear comfortable clothes, not appropriate in their work setting, during the postoperative period. Several participants used technology, such as computers and fax machines, to perform work tasks at home when physically unable to be onsite. Voicemail enabled a survivor to respond to client needs at a later time when she felt capable. Survivors working in health care settings took precautions to limit infectious disease exposure (e.g., using masks, limiting contact with infectious patients). Reduce non-work activities at workplace Reduction in non-work-related physical activity at the workplace increased survivors’ capacity to perform work-related tasks. A few participants reported changing non-work behaviors, including remaining at the office during lunch breaks and reducing the amount of items carried from their cars to their offices, conserving energy during work, and enabling them to perform work tasks that might have otherwise exceeded their energy levels. Receive cognitive from others or provide cognitive prompts to self Supervisors, co-workers, and family members provided reminders about work tasks and refreshed survivors’ memories about work-related conversations in response to cognitive limitations. A few participants developed strategies to address cognitive challenges, including writing notes, relying on electronic devices, and allowing themselves to acknowledge memory lapses and return to the forgotten thought later. One participant received reminder cell phone text messages from a family member. Most survivors reporting “brain fog” or mental fatigue indicated they did not inform supervisors or co-workers about these challenges. Act preemptively to manage work tasks after returning A limited number of survivors conducted work-related tasks sooner than normal or while on medical leave. One survivor performed upcoming physical tasks before surgery in anticipation of functional limitations after surgery. Another participant performed some work using a laptop computer at home during her official medical leave to avoid substantial difficulties that were likely to develop if others unfamiliar with the task were to work on the task during her absence.

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Table 3 Strategies to Address Actual and Potential Limitations at Work* Modify Work Schedule Work fewer or different hours at primary job But I was able to work for the most part, bare minimum two days a week, all through chemo. But right at the tail end when I was switching over from IV chemo to an oral-based chemo, it just builds up in your system and it ran me down. (3) But, yeah went to half, I went five hours a day to go and then get my therapy and I just don’t go back [to work]. And that was a good way to do it. (6) I was still just doing half days for three days a week. And half days for me was about four to six hours. It was usually morning hours, never in the afternoon. Because by the afternoon you’re kind of tired. So, for me it was, I worked in the mornings. (5) And I actually worked from home for about two months. And then I went back to work part-time, and the other time, if I could physically, then I worked from home in the afternoons. (10) Leave part-time job (while keeping full-time job) I pretty much at that point, I put in my notice at the [part-time job] job in [city] because I knew I was just going to be too busy and wouldn’t be able to do much, and at that point they hadn’t been having that many shifts that they needed me for anyway, so I figured well it’s kind of a mutual thing. (14) Perform Other or Fewer Work Tasks Perform substantially different tasks I delegated more tasks than usual. I tried to do a little bit more spreadsheets, just because I was in the office. It was very, very exhausting. (4) I work in a classroom with people for the most part that are able to self-feed. But there are a few that need some hand-over-hand assistance. So, seeing that we have a short time for lunch I don’t help those people with assisted feeding goals because we’ll be there much longer because of, as they call it, ‘chemo fingers.’ So, they’re like, “You work with him.” I’m like, “Okay.” (3) Reduce overall workload So, probably the day that I went back they purposely made my schedule very light. I might’ve seen four people my first day back to work [during shortened day]. [Had typically seen 20–25 people a day prior to diagnosis.] (5) Some of my responsibilities that I normally have [while at a conference] I left to other people so I could go to bed. (11) I love the creativity part of [job], but it is a lot of stress because you have deadlines and you have to get this done and that done and there’s just so much. So that was the first thing I did is, drop the stress, reduced my workload a bit. (17) Receive (temporary) assistance from others People were like, “Oh, should you be doing that? Don’t be doing this if you’re not supposed to, we’ll do it for you. You do this and let me do this for you because this will be easier for you until you get back into everything like you’re supposed to.” (13) Modify or Change Work Environment Physically modify existing work space at regular workplace But my computer’s in the corner so I had to kind of rearrange how I was doing things so it would be more accessible and easier and I wouldn’t be turning so much and lifting or raising my arms so much because I was still in the process of trying to do all that.” (13) Change work location We had set up remote access so that if I couldn’t be there or whatever, we’d have like a backup plan to be able to handle it. I did have at least, probably, two clients bring me work. Once I said I could work a little bit at home, then they brought information to my house. (16) Use technology to reduce limitations Once I started working at home, I was set up with a computer, a laptop, and a cell phone, they would scan documents in and call to make sure that I had them. If I needed anything in the office, they brought it to me at home. It was a very good situation. (10) I’m sure that there are days, if I’m really experiencing pain, that I might be shorter with people but I tend to notice it. And if I am, I won’t talk to people. I’ll ask them to be put in my voice mail and I’ll call them at a later time. (10) Limit environmental exposures at regular workplace I could go into rooms, but I didn’t do it a lot. I mean I wouldn’t go in any infectious rooms. But you know I would go and talk to patients some. I was up and mobile and doing anything I needed to do. Everything stayed pretty normal for me. So I could have done-I could have went into infectious rooms if I wanted to. I just sort of limited my time to do those kinds of things. (14) [Health care provider] Reduce non-work activities at workplace I parked very close to the door of [workplace]. I couldn’t go out to lunch. If I tried to walk to my car to go out to lunch, it would completely wipe me out, so I had to bring my lunch every day. (4) And so I bring my lunch, my pocket book, my day bag, my coat. So I’m carrying a lot but at first, like right after the surgeries, “I can’t pack - I can’t take all this stuff.” I seriously cannot, you know, lift it. So, I mean, I have to watch how much stuff I’m lugging around. But for the most part nowadays, you know, I still tone it down. (15) Receive Cognitive Prompts from Others or Provide Cognitive Prompts to Self Receive cognitive prompts from others I already told you my coordinator sometimes–she probably did a few things here or there, would remind me of something I really need to do more than once. (14) So my daughter would start to send me texts, especially in the last couple of weeks, I would say, I really need to do this, it’s so important, I can’t remember. She said, “I’ll send you a text, Mom, so when you turn on your phone, there it will be.” (17) Provided self with cognitive prompts You know before, whereas I would just put the number in my head and go to the back and get it, now I’m writing it down and I carry that piece of paper with me so I don’t mess up. (13) Yeah, it’s kind of a joke. I’m like, “Oh gosh, you know, here I go again.” And they’ll be like, “Well, you’ll think of it. It’s coming really soon.” And it always does. So I just, I don’t stop what I’m doing and try to - “OK, what was it? What was it?” I kind of just dismiss it, and it always comes. (8) Act preemptively to make work tasks manageable after return When I first found out about all this when my surgery was, I went in and worked three days to set up my classroom because I was told, no lifting, no arms above the head, no any of that. So I went and worked, finished the day before my surgery so I didn’t have to worry about setting up my classroom. (17) To avoid [a specific problem experienced during a previous medical leave] this time, I didn’t want more work when I got back in the office or have to clean up somebody else’s mess, so I just said, you know, let me work on [this task] while I’m out [on medical leave]. I can certainly email back and forth. (11) *

Quotations are followed by the unique identification number assigned to participant.

Use of Multiple Strategies Most participants drew on multiple strategies to minimize the negative effects of cancer-related limitations on work performance during and after treatment. For example, after

receiving her diagnosis, one survivor stopped working at a parttime job; she also substantially reduced the number of hours worked at her full-time job to accommodate her fatigue. As her physical limitations emerged, her supervisor reassigned her to a different group of clients who required less physical exertion

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than those with whom she had been working. Co-workers informally “helped out” by assuming responsibility for the more physically strenuous tasks, leaving the easiest and safest to their colleague. A second example further illustrates the range of strategies used. A survivor reduced her work week from 3 days to 2. She rearranged the location of items at her work station to reduce painful arm movements, surreptitiously swapped her armless office chair for one offering support, and worked more slowly. She proactively wrote down information she had previously retained through memory. The survivor also received solicited and unsolicited assistance with physically challenging tasks from co-workers. Additionally, upon request, co-workers refreshed her memory about work conversations and technology issues. Formal Versus Informal Strategies Survivors utilized both formal and informal tactics to minimize or prevent cancer- or treatment-related effects from negatively affecting job performance. Examples of formal strategies included reducing the number of patients a health care provider was assigned during a specified time period, explicitly changing expectations regarding the number of hours per day or days per week an employee worked, allowing an employee to work from home in marked contrast to her prior work arrangement, and providing devices to enable the employee to continue to work despite cancer or treatment-related limitations (e.g., providing a laptop to use at home while recuperating). Informal MAA also enabled participants to continue or resume working. They did not bring to the forefront formal workplace guidelines; they could be put into practice without supervisors’ or clients’ explicit consent. These changes may be perceived by the survivor as co-workers simply helping out or working as a team; these changes may also be implemented by the survivors themselves. One major strategy identified in Table 3, receiving temporary assistance from others, was exclusively informal as reported by the participants. Most categories of strategies were implemented both formally and informally. Schedule modifications were formal when work times were changed. Salaried employees who worked beyond the mandated minimum hours could also adjust their work schedules informally, by reducing the amount of extra work hours worked. For example, one participant was a school teacher who ceased working evenings once her treatments started. Discussion This analysis adds depth to knowledge about survivor strategies to address work-related limitations caused by cancer and its treatment. Our study provides greater detail about MAA than previous studies examining survivors’ workplace experiences (Amir et al., 2008; Johnsson et al., 2010; Kennedy et al., 2007; Main et al., 2005; Tamminga et al., 2012). Although others have noted some cancer survivors reduce or modify work hours after diagnosis (Bradley et al., 2007; Torp et al., 2012), our analysis expands schedule modification to encompass a range of strategies, including quitting a part-time job and reducing coursework. Performing other or fewer tasks involved modification to the content of workplace activities, eliminating selected activities, and allowing others to “help out” with tasks. Modifying the work environment encompassed changing a survivor’s work location, physically changing the work station, using technology for telecommuting and increased control over job location, and limiting

exposure to occupation-related environmental health risks. Although technology can be a crucial resource for some survivors, it does not obviate the potential need to reconfigure the work station. Current literature has focused on the performance of work activities themselves, and in doing so, obscured workplace strategies to address non–task-related limitations. In our analysis, workplace modifications were not limited to the work itself. Survivors reported limiting non-work physical activities at the worksite to minimize work-related limitations caused by fatigue. A few participants reported receiving cognitive prompts from co-workers or devising strategies to address memory limitations. Finally, participants reported performing activities in advance to ensure effective completion of tasks, indicating preemptive strategies may be implemented before undergoing treatment. The range of schedule modifications illustrates the many ways in which adults engage in work and school (U.S. Census Bureau, 2011). A few workers held several jobs at diagnosis, as do approximately 5% of adults in the U.S. general population (U.S. Department of Labor, 2010). Reduced work hours can represent a reduction in hours at a primary job, shedding one or more parttime jobs, or reducing course work. Analyses restricting focus to the primary job may obscure the full range of strategies engaged by survivors. Individual survivors engaged in multiple workplace strategies, both formal and informal, to reduce the negative effect of work limitations, a distinction that has not been adequately addressed in other cancer survivorship and work literature. For this analysis, formal tactics were those that required employer recognition (or, if self-employed, client recognition) that expectations for work tasks or the work schedule had changed. These findings suggest that cancer survivors and those providing care and services to them should identify multiple strategies, formal and informal, that survivors may implement at work during and after treatment. Furthermore, this information should be provided as survivors are contemplating whether to work during treatment or when to return to work after treatment. Consistent with the analysis of Torp and associates (2012), participants in our study reported the following accommodations: changes to the number of hours worked, having other or fewer tasks to reduce physical strain, and physical changes at the workplace and/or access to aids. No participant reported performing other or fewer tasks to reduce mental strain, a category included in Torp and co-workers’ analysis. This may be owing, in part, to small sample size. However, workers in Norway (who were included in Torp et al.’s study) have better protections against job and income loss owing to illness than U.S. workers (Family and Medical Leave Act, 1993; Hauglann, Benth, Fossa, & Dahl, 2012). U.S. survivors may be particularly reluctant to initiate a conversation with their employer about cognitive limitations owing to concerns about job security and perceived difficulty receiving MAA. Our study has limitations. We conducted interviews with cancer survivors from one region of the southeastern United States and excluded women younger than age 25 and older than 55. Qualitative analysis of a small, purposive sample does not enable us to generalize our findings to the entire population of breast cancer survivors or analyze how MAA used varies by cancer treatment or job characteristic. Our sample included few survivors with physically demanding jobs, and excluded survivors who had not yet returned to work at the time of the interviews. Factors enabling or constraining survivors from returning to work are not addressed in the present analysis.

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However, our research methods were appropriate for our research goals. Through systematic analysis of semistructured interviews, we were able to identify a broad range of strategies, both formal and informal, survivors drew upon to reduce work limitations, expanding upon those previously identified (Amir et al., 2008; Johnsson et al., 2010; Main et al., 2005; Kennedy et al., 2007; Pryce et al., 2007; Tamminga et al., 2012; Taskila et al., 2011; Torp et al., 2012). Future research should enroll substantially more participants, obtain detailed clinical information, and clarify the time period during which each MAA was used. These strategies would enable researchers to analyze the range of specific formal and informal strategies used by cancer survivors and how their use varies by cancer diagnosis, cancer treatment, time since treatment, and job characteristics. Such knowledge may lead to the development of educational interventions that will provide detailed information to survivors, health and social services providers, and employers about strategies they may implement to reduce work-related limitations. Implications for Policy and/or Practice These findings add to our knowledge about strategies to address women cancer survivors’ work-related limitations. Participants reported the use of multiple strategies, including modifying work schedule, performing other or fewer tasks, modifying or changing the work environment, reducing nonwork activities at the workplace, using cognitive prompts, and acting preemptively to make work tasks manageable after their return to work. Women survivors may benefit from use of multiple strategies to address negative effects of cancer and treatment on work. Cancer survivors in the paid labor force require appropriate information and interventions to maintain or regain employment (Frazier et al., 2009; Tamminga, de Boer, Verbeek, Taskila, & Frings-Dresen, 2010). Survivors in the United States seldom receive information about the effects that cancer treatment might have on their capacity to work and strategies they can implement to minimize them (Bains, Munir, Yarker, Steward, & Thomas, 2011; Munir et al., 2011). Popular cancer websites focus primarily on legal rights under federal policies, the importance of identifying employer-specific policies, and strategies to communicate with supervisors and co-workers about needs. This information, although crucial, is by itself inadequate. Research informed by this analysis should expand the sample size and collect data that will enable researchers to analyze how the range and effectiveness of MAA used among cancer survivors at work vary by cancer diagnosis, cancer treatment, and jobrelated characteristics. Knowledge identified in this and future studies may enable health care providers, social services providers, and employers to identify targeted strategies, both formal and informal, that may reduce the negative effects of workrelated limitations in work settings. Acknowledgments The Wake Forest School of Medicine’s Center for Worker Health provided funding for this study. Editorial support was provided by Megan J. Whelen, MPH (Comprehensive Cancer Center of Wake Forest University). We greatly appreciate the willingness of breast cancer survivors who participated in this study to share their experiences. An earlier version of this analysis was presented at a poster session at the 6th Biennial

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Cancer Survivorship Research Conference in Arlington, Virginia, in 2012.

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Author Descriptions Joanne C. Sandberg, PhD, is Assistant Professor in the Department of Family and Community Medicine at Wake Forest School of Medicine. She received a doctorate in sociology from Vanderbilt University. Her research interests include worker health, cancer survivorship, and health technology.

Carla Strom, MLA, is the Health Equity Program Manager at the Comprehensive Cancer Center of Wake Forest University. Her work focuses on health disparities, cancer survivorship, and minority recruitment to clinical trials.

Thomas A. Arcury, PhD, is Professor and Vice Chair for Research, Department of Family and Community Medicine, and Director, Center for Worker Health, Wake Forest School of Medicine. His research focuses on occupational health and the selfmanagement of chronic health conditions.