Strategies to support cancer survivors at work: Content analysis of cancer survivor, healthcare provider, and employer perspectives

Abstract

Purpose:

To (1) describe the challenges identified by cancer survivors, healthcare providers, and employers related to work maintenance and optimization during and after cancer treatment and (2) identify strategies that can address those challenges.

Methods:

We conducted content analysis of semi-structured interview data collected from cancer survivors, healthcare providers, and employers regarding workplace challenges that cancer survivors face and strategies to address them. Challenges and strategies were summarized according to whether they related to the cancer survivor, the work demands, or the work environment.

Results:

45 total participants identified challenges and strategies primarily related to the cancer survivor’s signs and symptoms of treatment. Healthcare providers (n=17) focused primarily on challenges and strategies related to the cancer survivor, while employers (n=5) focused on the work environment – especially policies and procedures that facilitate time off work and the importance of bidirectional communication between cancer survivors and employers. Cancer survivors (n=23) identified challenges and suggestions in all three categories, though they uniquely focused on challenges relating to work demands and adjustments to those demands that would facilitate employment maintenance.

Conclusions:

Efforts to address the many challenges that cancer survivors experience at work should include the views of cancer survivors, healthcare providers, and employers reflecting their respective domains of expertise in work demands, cancer survivors’ medical care, and the work environment.

Implications for cancer survivors:

Survivors and healthcare providers are able to address many side effects that can create work challenges, but improved collaboration between survivors and employers may identify ways to modify work demands and environments to maximize employment maintenance.

Introduction

As of 2017, 5% of the United States workforce had a history of cancer, a quarter of whom were actively undergoing some form of cancer treatment [1]. Nearly half of cancer survivors of working age report moderate to severe concerns regarding their ability to maintain paid employment during and after cancer treatment [2]. During an already stressful time, worry over job and financial security can combine with physical and psychological side effects of treatments to further decrease productivity and negatively impact the work experience [3]. To address these stressors, it is important for cancer survivors and their employers to discuss their needs and challenges and work together to execute a mutually beneficial employment plan.

Healthcare providers have a lot to contribute to conversations between cancer survivors who face work-related challenges and their employers. National Comprehensive Cancer Network guidelines [4] recommend that healthcare providers should initiate conversations with their patients early in the cancer treatment trajectory to minimize the effects of treatment on employment by “anticipat[ing] and identify[ing] concerns” and facilitating supportive care [4]. This can include identifying alternate therapeutic options to minimize the physical impacts of treatment on employment, and also involving other clinical team members to help address employment issues such as social workers, physical and occupational therapists, and primary care providers [4].

Despite these recommendations, it remains unclear exactly how cancer survivors, healthcare providers, and employers should work together to optimize work outcomes. In the United States, the constellation of services that support people with cancer at work is fragmented and services can be difficult to access. Occupational medicine services are often located in clinical settings and operate separately from workplaces, with few exceptions where very large employers maintain their own occupational medicine clinics [5]. Vocational rehabilitation services offered at the state level are often better integrated into workplaces and work processes. However, vocational rehabilitation services are generally oriented toward career changes, and strict eligibility requirements surrounding disability status and income [6] can hinder access to these services for cancer survivors.

Editorials suggest that health systems, employers, policymakers, and researchers struggle to find adequate solutions [7]. Although recent studies have highlighted the role of the employer in improving work outcomes among cancer survivors [8–10], few studies [11–14] have incorporated the views of diverse stakeholders to identify strategies to support cancer survivors at work. In order to gain a more complete understanding of the problems cancer survivors face at work and of strategies to help address these problems, we must take into account the views of cancer survivors, healthcare providers, and employers.

In this qualitative study, we aimed to incorporate perspectives from cancer survivors, healthcare providers, and employers to (1) describe challenges related to work maintenance and optimization during and after cancer treatment and (2) identify strategies that can address those challenges.

Methods

Design

This report presents a content analysis of data from a qualitative, descriptive study conducted at the Dartmouth Cancer Center in Lebanon, NH, United States (US). Our overarching motivation for conducting the study was to answer the question, “How can we best support cancer survivors at our cancer center in meeting their work-related goals?” We created a semi-structured interview guide that asked about challenges faced by cancer survivors in maintaining employment, ways to ameliorate those challenges, and the types of interventions or resources that should be offered at our cancer center. The interview guide was customized to elicit the opinions and experiences of three types of participants that each had a different perspective: cancer survivors, healthcare providers, and employers. We chose to conduct individual interviews (as opposed to focus groups) to minimize social desirability bias and/or hesitation to contribute due to the potential sensitivity of financial and employment-related topics [15]. The study was approved by Institutional Review Boards of Dartmouth-Hitchcock Health (#02000975) and Massachusetts General Hospital (#2021P002762) and all participants provided written documentation of their informed consent to participate in the study.

Participants

We recruited a convenience sample of participants [16] who live and/or work in the Dartmouth Cancer Center (Lebanon, NH, US) catchment area, which includes the US states of Vermont and New Hampshire. Participants included:

• Cancer survivors: Adults 18 years and older who have been diagnosed with any type of cancer, are actively employed, and report reduced productivity at work or needing to work fewer hours due to their health. There were no inclusion or exclusion criteria related to time since diagnosis.

• Healthcare providers: People who professionally provide clinical or supportive care to oncology patients.

• Employers: Business owners, human resources professionals, and/or managers who oversee employees as part of their routine job duties.

To recruit cancer survivors and employers, we circulated flyers, advertisements, e-newsletters, social media posts, direct email invitations, and other outreach through organizations like chambers of commerce and cancer advocacy organizations. To recruit healthcare providers, members of the research team who worked at the Dartmouth Cancer Center sent direct email invitations.

Data collection

Interviews were conducted individually in-person or via Zoom videoconferencing, according to participant choice. Our inclusion of both in-person and remote interviews was intended to prioritize convenience for participants. By scheduling each interview at a time, place, and modality that was convenient for the participant, we attempted to maximize participants’ comfort and willingness to talk with us and share their experiences and opinions. The interviewer (K.J.M. or C.M.G.) used a semi-structured interview guide customized for each of the three types of participants. Participants were asked to describe (1) the challenges they have faced or witnessed when cancer survivors worked during treatment or returned to work after taking time off; (2) the local resources that are available to cancer survivors and employers; and (3) guidance for the type(s) of programs they think we should develop to support cancer survivors at work. This content analysis summarizes the data regarding the first two topics. Results addressing the third topic are published elsewhere [17].

The interviews were recorded and professionally transcribed verbatim. A team member proofread each transcript, compared it to the recording, and removed names to minimize identifiable information.

Analysis

Analysis was conducted using NVivo software. One investigator (K.D.L) read all transcripts and coded the data with descriptive labels that indicated the topic of text (e.g., “change in priorities” to describe when survivors said their values and feelings about work changed after cancer diagnosis). An operational definition of each code was created and iteratively refined as the coding scheme evolved. The coding scheme included both inductive and deductive codes (i.e. codes originating directly from the data and codes reflecting our a priori interests regarding employment challenges, respectively)[18] to capture diverse emerging patterns in the data. We then summarized the data found in deductive codes that were directly related to the following [19] analytic questions: What challenges make it hard to work or to support cancer survivors as they work during or after treatment and what resources do participants identify as available to potentially address those challenges? These questions were informed by a gap that clinicians and researchers identified at our local cancer center around patients accessing support for employment-related challenges.

Three deductive code categories contained the data for this content analysis: a) challenges that survivors experience at work, b) employment support from providers, and c) employment support from employers. One author (K.D.L.) took the associated text for each relevant code and created a bulleted list of the responses, recording the identification numbers of the participants who reported each item on the list. To ensure the bulleted lists accurately reflected the data, a second team member (either C.M.G. or K.JM.) read the coded text and checked that the perspective or experience voiced was a) included in the list and b) represented appropriately. The identification numbers for each item were then removed and replaced by labels to reflect the stakeholder group that voiced the item.

The next step was to further condense the data to help us identify potential avenues for supporting cancer survivors at work. To do this, we used the Work and Cancer model described by Feuerstein and colleagues [20], which was created by exploring the literature to identify domains associated with work outcomes among cancer survivors. We grouped the challenges and strategies into three overarching domains in the model: (1) the health, well-being and characteristics of the cancer survivor; (2) the work demands; and (3) the work environment.

One team member (K.D.L.) categorized each item, then five team members (K.D.L., C.M.G, C.J.S., K.J.M., and R.C.F.) discussed each item to reach consensus about whether it was placed in the right domain. Recognizing that many items could be placed in more than one domain as items were often intertwined and not mutually exclusive, we used consensus to assign each item to only one domain for ease of presentation. Within each domain we then clustered items according to their target, e.g., the body structure involved in the challenge. Two team members (R.C.F. and K.D.L.) identified areas of overlap and divergence among the three stakeholder perspectives. The study team then reviewed and refined the final summary and interpretation.

Results

Participants

A total of 45 participants enrolled in the study, including 23 cancer survivors, 17 healthcare providers, and five employers. Three of the cancer survivors also reported supervising people at work and, therefore, provided input from both cancer survivor and employer perspectives, which provided us with a total of eight employer perspectives. At the time of the interview, 17 cancer survivor participants had completed cancer treatment and 6 were still in treatment. Tables 1a, 1b, and 1c summarize participant characteristics.

Table 1a.

Cancer survivor participant characteristics (self-reported, n=23)

Characteristic	Cancer Survivors
Gender
Female	19
Male	4
Age
Average	55.0
Range	28–78
Std. Deviation	11.0
Ethnicity
Hispanic or Latino	0
Not Hispanic or Latino	23
Race
American Indian/Alaska Native	0
Asian	0
African American/Black	0
Native Hawaiian/Pacific Islander	0
White	23
Educational attainment
< 12 years (Did not graduate from high school)	0
12 years or completed high school	1
Post high school training other than college (vocational, technical)	1
Some college	4
College graduate (Bachelor’s degree)	7
Postgraduate (Master’s, Doctorate)	10
Current Employment Status
Full-time	14
Part-time	6
Retired	0
Homemaker	0
On long- or short-term disability	2
Unemployed (looking for work)	0
Unemployed (not looking for work)	0
Other	1
Cancer Staging
0	0
i	4
ii	6
iii	5
iv	5
Unsure	3
Treatment Experience
Surgery Only	1
Chemotherapy Only	2
Radiation Only	0
Surgery & Chemotherapy	5
Surgery & Radiation	2
Surgery, Chemotherapy, & Radiation	13
Completed Treatment
Yes	17
No	6
Cancer Type (Primary Tumor Site)
Breast	12
Colorectal	4
Blood	2
Skin	2
Oral	1
Prostate	1
Gynecologic	1

Table 1b.

Healthcare provider participant characteristics (self-reported, n=17)

Characteristic	Healthcare Providers
Gender
Female	14
Male	3
Age
Average	51.7
Range	27–74
Std. Deviation	12.1
Ethnicity
Hispanic or Latino	0
Not Hispanic or Latino	17
Race
American Indian/Alaska Native	0
Asian	1
African American/Black	0
Native Hawaiian/Pacific Islander	0
White	16
Educational attainment
< 12 years (Did not graduate from high school)	0
12 years or completed high school	0
Post high school training other than college (vocational, technical)	0
Some college	0
College graduate (Bachelor’s degree)	3
Postgraduate (Master’s, Doctorate)	14
Current Employment Status
Full-time	12
Part-time	5
Occupation
Physician	5
Advanced Practice Registered Nurse	4
Registered Nurse	2
Social Worker	3
Occupational Therapist	1
Psychologist	1
Dietician	1

Table 1c.

Employer participant characteristics (self-reported, n=5^a)

Characteristic	Employers
Gender
Female	3
Male	2
Age
Average	51.4
Range	34–61
Std. Deviation	10.7
Ethnicity
Hispanic or Latino	0
Not Hispanic or Latino	5
Race
American Indian/Alaska Native	0
Asian	0
African American/Black	0
Native Hawaiian/Pacific Islander	0
White	5
Educational attainment
< 12 years (Did not graduate from high school)	0
12 years or completed high school	1
Post high school training other than college (vocational, technical)	0
Some college	2
College Graduate (Bachelor’s degree)
Postgraduate (Master’s, Doctorate)	2
Current Employment Status a
Full-time	7
Part-time	1
Retired	0
Homemaker	0
On long- or short-term disability	0
Unemployed (looking for work)	0
Unemployed (not looking for work)	0
Other	0
Job Classification a
Manufacturing	1
Finance	1
Non-profit	1
Government run (state or local)	2
Healthcare	1
Biotech or medical research	1
Other	1
Role a
Owner	2
Supervisor/Manager	3
Human resources	3
Occupational Medicine	0
Other	0
Organization Size a
Micro (1–9 employees)	1
Small (10–49 employees)	1
Medium (50–249 employees)	2
Large (250+ employees)	4
Organization Ownership a
Locally owned	4
Regional	1
Part of national company	1
International	2

^aSeveral categories include three cancer survivors who offered their perspectives as both employers and survivors, totaling n=8.

Barriers to work during and after cancer treatment

Table 2 summarizes the perspectives of cancer survivors, healthcare providers, and employers about the specific challenges cancer survivors face at work during and after treatment.

Table 2.

Barriers to work during or after cancer treatment

Domain	Category	Participant idea	Voiced by at least one:
			Cancer Survivor	Healthcare Provider	Employer
Factors related to the cancer survivor’s health, well-being, and symptoms	Neurological	Cognitive issues (e.g., memory, attention) affecting productivity and quality of work and ability to multitask1	✓	✓
		Pain, altered/lost sensation, or neuropathy	✓	✓
		Potential for seizures, leading to inability to drive	✓	✓
		Nerve weakness	✓
	Musculoskeletal	Impaired balance	✓	✓
		Trouble manipulating objects, opening things	✓
		Swelling, joint inflammation, arthritis	✓
		Muscle tension, decreased range of motion, muscle weakness	✓	✓
		Immunosuppression	✓	✓
	Integumentary	Pallor, visible scars or disfigurement can draw comments and attention (both good and bad)	✓
		Weight loss or hair loss as well, or weight gain or tubes (from surgery) that affect clothing and arm movement	✓	✓
		Skin issues, skin burns or peeling, rash	✓	✓
		Hand foot syndrome	✓	✓
	Gastrointestinal	Needing to use bathroom frequently due to diarrhea or constipation, or perform ileostomy care; gastrointestinal blockage requiring treatment, incontinence	✓	✓
		Need more time to eat because of wounds from treatment	✓
		Nausea, lack of appetite, inability to eat, or trouble swallowing	✓	✓
		Mouth sores or metallic taste or cold sores	✓
	Endocrine/Sensory	Hot flashes and early menopause, increased sensitivity to heat	✓	✓
		Trouble breathing		✓
		Impaired vision		✓
		Fevers	✓
	Psychiatric	Fatigue so great it feels like apathy or numbness or malaise; can be unpredictable	✓	✓
		Feeling like you are giving more on the job than your body can handle	✓
		If you are exhausted outside of work (making meals, taking care of kids) it will be harder to work	✓
		Depression or “emotional aftereffects” or anxiety	✓	✓
		Trouble sleeping	✓
		Feeling overwhelmed		✓
		Steroids to manage side effects can make you anxious	✓
		Worry about performance: Pressure to make sure clients and customers do not feel like quality will suffer, worry over losing trust of clients and customers, worries over losing business; It is stressful when you feel like your employer is worried about or disappointed in your productivity; it is a lot of pressure on patients when they feel like they are letting their boss down	✓	✓
		Worry about health status: It’s hard to be in the peak of your career and not know how your body will respond, what late effects will happen; things you’d experience in older age like joint pain/arthritis, you are told to expect now; there is a lot of uncertainty because doctors don’t know who will experience certain symptoms	✓
		Feels bad not to have your usual level of productivity or stamina	✓
		Feeling guilty to be making less money (if hours reduced or time off) when cancer treatment can create expenses	✓
		Survivor’s guilt [feelings about surviving cancer while others do not]	✓
		If you aren’t feeling well much of the time, people may want to spend time they feel well with family and friends as opposed to work		✓
Factors related to work demands	Workload	Not having a co-worker to share the load when needed/no backup/if I don’t do the job, it doesn’t get done	✓
		It would be lovely if you could just do the rewarding parts of your job while going through treatment, but the job must be done and that includes the negative or stressful parts of the job; that can add to stress and affect self-care	✓
		The work doesn’t stop so sometimes a person’s job can’t be held when they are out	✓
	Schedule	Treatment and hospitalization can disrupt ability to work normal schedule or hours	✓	✓
		If the job is seasonal, needing treatment at the start of the season can mean that you get less work for the whole season	✓
		Pressure to be on site versus allowed to work remotely part-time	✓
Factors related to the work environment, including policies and procedures	Colleague/Employer support	No one checked in, asked me how I was or what I needed after the first week back; felt like didn’t get as much support as needed	✓
		Employer saying you’ll need to figure out how to get your job done instead of partnering to figure it out (makes you feel like ‘if you won’t help me, I’ll just leave and not work at all’)	✓
		It’s hard if the employer is all or nothing- work full-time or don’t work, because easing into work can be therapeutic		✓
		Some clients/customers/students don’t want to watch someone work through treatment, e.g., parents thinking their children would be scared to see teacher look and act differently	✓
		Coming back to chaos after being out on leave (e.g., mail piled up on desk); may need to work three times as hard when you are back to make up for the flexibility or hours you were given	✓
		Sometimes people power through and work during treatment and it catches up with them (emotionally and physically) when treatment is done and it’s hard to play catch up		✓
		When you come back to work, people think you are over it, healthy, recovered and that doesn’t always feel the case	✓
	Policies and procedures	“…there is no safety net for self-employment.”	✓
		The rules are vague and confusing: Took two different doctors to decide if a government worker could return to work or not	✓
		There are many rules regarding disability and unemployment and sometimes people are not eligible for certain programs	✓	✓	✓
		It can be confusing to figure out if you are being paid the right amount if you are on disability or reduced hours	✓
		Employers need to make sure they are treating all people fairly and consistently			✓
		All cancers are different, treatments are different so you might be out longer and need accommodations where another co-worker didn’t and that can make it hard for employers to understand if they are worried about “setting a precedent”	✓
		It can be easier to support salaried employees (because there is more flexibility in the rules) than hourly employees			✓
		Employers can support an employee quite a bit if the team is functioning well, but if the team suffers and loses the ability to get the job done then employers have fewer options			✓
		The day-to-day work must get done. Some systems don’t have enough people or money to pick up the slack	✓		✓
	Disclosure	Not wanting to tell your employer that you have cancer; not sure how and when do you tell new employers about your bodily challenges (e.g., using the bathroom frequently)	✓	✓
		Can lose touch with employees while they are out- it’s hard to check in, because you want to know how they are doing but don’t want to bother them			✓
		It’s hard for employers to help is the person does not disclose what is going on (if all you see is poorer than normal job performance)			✓

Of the three participant groups, cancer survivors identified the greatest number of challenges. These challenges covered factors related to health and symptoms, work demands, and the work environment and policies. Healthcare providers focused primarily on the signs and symptoms of cancer and cancer therapies, including physical, cognitive, and mental/behavioral health impacts on work. Employers highlighted interpersonal challenges in the work environment around communication and disclosure; they cited difficulty determining the appropriate timing and methods of checking in with cancer survivors and communicating with them about what they need. Employers also emphasized that they often lacked information about what cancer survivors are experiencing due to limited disclosure by employees. Similarly, cancer survivors mentioned struggling to identify what information to disclose to their employers and when to do so.

Existing supports that help cancer survivors work during and after treatment

Tables 3 and 4 summarize the things that participants had seen or experienced which were intended to support cancer survivors at work. Many supports mentioned in Table 3 were services available through our local cancer center. These include physical therapy and mental health services, which meet physical rehabilitation needs and address distress, anxiety, and depression that can be associated with both cancer and difficulties at work. Occupational therapy can provide strategies for reducing the impact of physical and cognitive limitations, distress, and anxiety in the workplace. Dietetic services facilitate work readiness by meeting nutritional needs required for physical and cognitive performance, particularly when cancer treatment interferes with eating (e.g., head and neck cancers) and/or gastrointestinal function. Additionally, health education supports cancer survivors to anticipate side effects that may impact their work and helps to identify relevant accommodations.

Table 3.

Existing types of healthcare services that support cancer survivors at work (identified by cancer survivors and healthcare providers)

Healthcare service	Type of support	Specific support	Voiced by at least one:
			Cancer Survivor	Healthcare Provider
Social work	Practical guidance	Help filing paperwork for disability or Family and Medical Leave Act	✓	✓
		Counsel them on how to tell their employer about what they need		✓
	Emotional support	“Emotional supportive counseling” and mental health support; help “normalize” worries over work performance; pivotal conversation with social worker saying “this is a temporary situation,” just file disability to get through this period: “she helped me reframe that”; Cancer survivor peer support group referrals	✓	✓
	Resource assistance	Refer them to TriageCancer.org for legal counsel and information		✓
		Provide resources (they don’t help you change your resume but refer you to someone who can) like vocational rehab or community health resources and support for family members		✓
Nursing	Practical guidance	Writing notes about medical restrictions during work or needing time off from work for medical reasons	✓	✓
		Even if they are not the ones to address work-related problems, it is within nursing scope of practice to identify if the patient is struggling in that area (ask) and assess (and refer)		✓
	Health education	Symptom and long-term side effect management, tracking of symptoms, including nutrition, and encouraging physical activity or weight loss and holistic well-being, encourage self-care		✓
		Help patients know what they can do, educate about how treatments may affect them, encourage them to advocate for self		✓
Medicine	Practical guidance	Writing notes about medical restrictions during work or needing time off from work for medical reasons	✓	✓
		Get labs or scans closer to home so less time off from work driving to cancer center		✓
		Asking what their plans for work are and providing patient the option to decide if they are ready to go back to work	✓
	Review of treatment options	Education about what chemo would entail, what are risks of working and how to minimize them, how treatments might make them feel- when not to work and when they’d feel good enough to work during chemo cycles. That’s important information to share with employer instead of just calling out one day ahead [i.e. letting employer know about an absence with only one day’s notice]	✓	✓
		Choose a treatment that requires them to come in less often if work is prioritized, though you never undertreat just to miss less work because if you don’t cure the disease, it could have the worse consequence of death; can schedule appointments around work schedule to an extent	✓	✓
		Adjust treatment doses to relieve side effects that cause major dysfunction in patients’ daily life (i.e., hospitalization)	✓
		Offer option for cold capping during chemo to maintain ability to still look like self	✓
Psychology and neuropsychology	Evaluation services	Assessment of cognitive status and counseling/feedback session on how to manage cognitive issues or affirm need for disability	✓	✓
	Resource assistance	Psychology treatment for managing distress, anxiety, or depression		✓
		Provide employee with list of accommodations to bring to employer		✓
Occupational medicine (accessible to patients who have this available through their workplace)	Practical guidance	Help with disability paperwork		✓
		Make recommendations for safe return to work and accommodations, sometimes in conjunction with other disciplines like occupational therapy		✓
	Evaluation services	Work and disability assessments that assess the degree to which diagnosis affects ability to work		✓
		Vermont RETAIN project [local, grant-funded, temporary project providing occupational support in primary care settings] offers care coordination to connect providers to vocational resources		✓
		Conversations about career goals like whether you want to stay at this job or look for another job/career path		✓
	Health advocacy education	Case managers can interface with employers		✓
		Train employees to advocate for themselves		✓
		Education around self-care as it relates to supporting work performance		✓
Occupational therapy	Evaluation services	Certified work capacity evaluation and cognitive functional capacity evaluation		✓
	Treatment	Address cognitive issues making it hard to work and be as productive		✓
		Energy management training		✓
Palliative care		Symptom management		✓
Physical therapy		Address physical limitations that make it hard to work	✓	✓
Dietetics		Coaching regarding optimal nutrition	✓	✓
Financial counseling		Financial counselors to help people figure out if they need to work fulltime, part time		✓

Table 4.

Facilitators of work during or after cancer treatment

Domain	Category	Participant idea	Voiced by at least one:
			Cancer Survivor	Healthcare Provider	Employer
Support for survivors’ health, well-being, and symptoms	Treat symptoms and side effects (see Table 3)	Provide healthcare that minimizes symptoms and side effects		✓
	Emotional and practical support	Voice support: “they [co-workers and boss] were all like, ‘we will do what needs to be done” and caring and compassion that they understand the stress of needing to schedule appointments and undergo treatment and the importance of promoting self-care; “Whatever you need, we’ll cover you”; explicitly say you won’t lose your job; ask how you are doing	✓		✓
		Talk to them “normally,” use humor, don’t be patronizing or talk to them “like a child”	✓
		Organize fundraisers to help with expenses	✓		✓
		Gift baskets from co-workers and cards, welcome back celebrations and meals	✓		✓
		Suggest Employee Assistance Programs (EAP) for emotional support or other programs (e.g., Work United) to help people connect to resources	✓		✓
		Offer “scholarships” or financial aid grants or income replacement or associate assistance funds	✓		✓
	Recognition and awareness	Showing support with cancer ribbons on nametags to raise awareness	✓
		Remember milestones (a co-worker remembers and celebrates cancer-free years)	✓
Changes to work demands	Workload adaptation	Help by giving new tasks (novel, distracting and not mission critical) that can distract during hard times (like when scans coming up)	✓
		Provide an assistant or intern to help get the work done or double-check documents or boss pitches in to get work done	✓
		Allow rest during the day	✓
		Offer “light duty” based on doctor’s recommendations; Reassign to another job or task if current one is too hard physically or emotionally	✓	✓	✓
		Provide the technology to support remote work; allow remote work or allow non-camera use when working remotely	✓	✓	✓
Changes to the work environment, policies, and procedures	Policies and benefits	Offering benefits to employees not fully qualified or vested yet	✓
		Provide pay during the time between when cancer survivor stops working and when disability insurance starts paying			✓
		Providing additional vacation/personal/sick time or allow co-workers to donate leave time or allow them to have a negative balance for sick time	✓		✓
		Hold the position (don’t replace) if someone needs to take time off	✓		✓
		Ability to take advantage of Family and Medical Leave Act	✓		✓
		Provide short-term/long-term disability insurance and tell employees how to access it/make it easy for them or cancer insurance/critical illness insurance (need to sign up before you are diagnosed)	✓		✓
	Scheduling flexibility	Allow people to work flexible hours	✓	✓	✓
		Allow people to work part-time (reduce hours) or allow salaried employees to work fewer hours without a pay cut or disability or to work a few hours and then use short-term disability to make up the lost hours	✓	✓	✓
		Let employee drive the timeline in terms of how much time off is needed	✓		✓

Healthcare providers and cancer survivors were attuned to solutions addressing the physical and cognitive signs and symptoms of cancer treatment. These approaches included intervening medically and/or with supportive counseling or training to overcome the cancer survivor’s work-related barriers associated with symptoms and to improve health, well-being, and function. For example, healthcare providers recommended services including physical therapy, mental health support, and health education to improve survivors’ ability to self-advocate.

Facilitators of work during or after cancer treatment

Cancer survivors and employers both emphasized the importance of a supportive work environment. Many of their suggestions focused on emotional support, including asking how cancer survivors are doing on a regular and longitudinal basis, celebrating survivorship milestones, and having normal, collegial conversations with cancer survivors – not being overly serious or patronizing. Cancer survivors and employers also suggested material gifts to create a supportive work environment for cancer survivors, including gift baskets, celebratory meals, and fundraisers to help cover the survivor’s expenses.

Other employer suggestions focused on creating and maintaining organizational policies that financially benefit cancer survivors and facilitate their time off work. For example, employers suggested policies that provide payment to cancer survivors during leaves of absence before disability pay kicks in, allow additional vacation and/or sick time, and hold positions for cancer survivors who take extended time off. These employer suggestions focused primarily on helping cancer survivors take time off from work rather than supporting them to remain at work during treatment.

Cancer survivors suggested adapting their work demands to allow them to successfully participate at work. For example, extra staffing support from an intern and/or boss may reduce the cancer survivor’s physical and cognitive demands. Introducing new or different tasks during a particularly stressful medical period could reduce the emotional demands of the job and improve mental well-being. Finally, providing rest opportunities during the workday might provide cancer survivors with an improved ability to complete physically and cognitively demanding tasks.

Discussion

Key findings

Cancer survivors identified challenges and strategies to support work during cancer treatment that spanned cancer survivor characteristics, work demands, and the work environment. Healthcare providers focused primarily on challenges and strategies relating to cancer survivor characteristics, including signs, symptoms, and health and well-being. Employer suggestions related mostly to tailoring the work environment. These complementary perspectives suggest that efforts to address the many challenges that cancer survivors experience at work should include the views of all three of these stakeholder groups reflecting their respective domains of expertise in work demands, cancer survivor health and well-being, and the work environment.

Results in context

In identifying challenges across stakeholder groups, our study largely supports other research findings from international contexts that explore cancer survivors’ challenges at work [21–23]. Our study’s findings related to healthcare providers’ tendency to focus on signs and symptoms of cancer treatment are consistent with those of United Kingdom-based providers in the colorectal cancer setting; they report limited knowledge of survivors’ work demands and environments, and therefore a reluctance to provide advice specifically about returning to work [21]. A qualitative study in the Netherlands finds debate among cancer survivors about what to disclose to employers and colleagues about the cognitive problems they experience at work as a result of their cancer treatment [22]. This is consistent with the uncertainty around communication and disclosure expressed by cancer survivors in our study. Further, a systematic review of work impairments among breast cancer survivors identified emotional issues like insecurity and frustration as barriers to work during survivorship [23]. Our findings highlighting the importance of a supportive work environment reinforce this prior research identifying insecurity and frustration among cancer survivors at work.

Our study’s broad focus on challenges and strategies during and after cancer treatment incorporated participants’ perspectives on both return-to-work and work maintenance issues. Much of the international evidence base on employment among cancer survivors uses a return-to-work framing and reports on outcomes like work status at 12 months’ follow-up [24]. In this study, the strategies suggested by employers to support cancer survivors reinforced this framing, as they focused on organizational policies to create a work environment that helps cancer survivors access time off work. Cancer survivors largely agreed with these approaches, but they also suggested accommodations that adjust work demands; these adjustments might support cancer survivors who choose to maintain employment during and after cancer treatment. For many cancer survivors, employment maintenance contributes to recovery by promoting normalcy and retaining personal identity [25–28]. Work demand-focused approaches that allow cancer survivors to maintain employment during treatment through accommodations are particularly important in the United States context, where half of the population accesses health insurance through an employer [29] and federal policy requires most employers to only provide 12 weeks’ unpaid leave per year for employees who are facing a serious health condition [30]. These unique aspects of the United States social context reinforce the importance of person-centered employment support focused on the work-related goals of the individual cancer survivor [31]. However, occupational health support is relatively rare in US workplaces [5]. Its integration into the work environment may better serve both cancer survivors and employers in improving work outcomes.

To implement workplace accommodations that support cancer survivors in overcoming these challenges, professional guidelines emphasize active and collaborative roles for cancer survivors, healthcare providers, and employers [32]. However, beyond reducing work hours or taking medical leave from work, existing guidelines lack detail on what types of accommodations would be most helpful [32,33]. In our study of these three key stakeholder groups, strategies that adjusted work demands were mentioned less often, as compared to strategies that target cancer survivors or the work environment. Cancer survivors contributed strategies that adjust work demands and allow for work maintenance; these contributions highlight work as part of the cancer rehabilitation process. Employers’ focus on providing more time away from work suggests they may not recognize the role of work in recovery. Together, these results suggest that healthcare providers, cancer survivors, and employers would benefit from more specific and tailored information on workplace accommodations suited for the challenges that cancer survivors experience across a variety of workplaces.

Given their different vantage points, cancer survivors, healthcare providers, and employers do not always share the same information and may have blind spots about work challenges and the strategies that can overcome them [34,35]. Employers’ focus on the work environment suggests that they may lack understanding of health challenges cancer survivors face. Health professionals may also lack understanding of employers’ challenges with and options for supporting cancer survivors at work. Collaboration across these stakeholder groups is therefore critical to improving cancer survivors’ employment experiences and outcomes. However, healthcare providers (including those providing occupational medicine services) and employers generally do not interact, and privacy concerns pose a challenge to increased collaboration across cancer survivor, healthcare provider, and employer stakeholder groups [36]. These privacy issues impact communication between stakeholder groups in this study both through healthcare privacy laws restricting disclosure by health professionals and by cancer survivors’ reluctance to disclose information about their health status to their employers. Future intervention development and implementation work will need to address these barriers to collaboration.

Strengths and limitations

A strength of this study was the directed content analysis approach taken to identify relevant barriers, resources, and strategies. Although a single analyst coded the data, we minimized the potential for bias by having two team members audit the coded data to ensure that the code adequately reflected the transcript text and that we did not exclude any participant’s data from the summary tables.

Another strength of this study was its inclusion of perspectives from three key stakeholder groups: cancer survivors, healthcare providers, and employers. We interviewed cancer survivors with experience across a variety of cancer treatments (surgery, radiation, and chemotherapy) and professions. However, this study focused on the challenges experienced by stakeholders in a single rural US cancer center’s catchment area, providing insight into employment challenges among a rural population. Findings may not generalize to other populations and environments. Instead, the results reflect needs and strategies to optimize work outcomes in this specific population. In particular, the number of employer participants was limited; the racial makeup of our sample largely represented the demographics of the region in which we conducted the study, but there lacked racial diversity among participants; and we lacked data on participating cancer survivors’ time since diagnosis, which prevented detailed investigation of how challenges and support needs vary over time. There is likely further variation in cancer survivors’ experiences according to cancer type (i.e., primary tumor site), which we did not analyze in this study. Finally, our convenience sampling approach could limit the generalizability of our results. While we recognize this limitation, we felt it was an acceptable pragmatic choice as we were primarily trying to understand the range of supports that are available, not to characterize the typical experience of those in our catchment area.

Conclusion

Cancer survivors and healthcare providers in our study were keenly aware of the need to address side effects of cancer treatment that present employment-related challenges. However, collaborative efforts are needed between cancer survivors, healthcare providers, and employers to identify modifications to work demands and create environments that support cancer survivors to achieve their work-related goals, particularly for those seeking to maintain employment throughout treatment.

Data Availability

The de-identified qualitative datasets used in the analysis are available from the last author (KDL) on reasonable request.