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Self-Employed Canadians’ Experiences with Cancer and Work: A Qualitative Study

This version is not peer-reviewed.

Submitted:

23 February 2023

Posted:

24 February 2023

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Abstract
Self-employed individuals comprise around 15% of Canada’s workforce. For those with cancer, frequent functional loss and diminished work ability due to side effects of the disease and its treatment significantly impact their well-being and business vitality. Compared to salaried can-cer survivors, the self-employed experience greater reductions in work hours and up to 48% greater income loss, yet most research addresses the former population. To describe self-employed Canadian cancer survivors’ experiences continuing and returning to work, our quali-tative study examines their strategic efforts to continue working throughout the disease trajecto-ry or return to work post-recovery. Employing an interpretive description approach and an in-terview guide based on a vocational rehabilitation model for cancer survivors, we analyze data from 23 participants—both French- and English-speaking—from six Canadian provinces, with eight different job types and nine different cancer diagnoses. Our constant comparative analysis of the transcribed interviews reveals four major themes and twelve sub-themes: Impact of can-cer on the self-employed function (physical, cognitive, and psychological), on their ability to maintain their business, and financial well-being, and facilitating factors for working with can-cer. Cancer disclosure and non-disclosure were both deemed viable strategies, but ceasing work was not. We thus recommend professional support for self-employed cancer survivors in plan-ning any necessary business modifications to accommodate their condition and cancer treatment to lessen the negative impact of cancer on self and on their business well-being.
Keywords: 
Subject: 
Medicine and Pharmacology  -   Oncology and Oncogenics

1. Introduction

Recent Canadian statistics indicate that approximately 45 percent of cancer patients are of working age (15–65 years) [1,2]. With a declining mortality rate and improvements in treatment and early detection, returning to work after cancer is becoming more feasible for many cancer survivors [3]. However, growing evidence suggests that individuals diagnosed with cancer experience difficulties continuing and returning to work [4,5,6,7]. Cancer and treatment side effects negatively influence many individuals’ quality of health, with a direct impact on their ability to work. Individuals with cancer often miss work, become less productive, have less financial security, lose their jobs, or retire early [4,5,6]. The literature on return to work (RTW) has predominantly focused on salaried cancer survivors [7,8], even though self-employed workers account for approximately 15% of the Canadian workforce [9]. The few, mostly European studies in this field show that self-employed cancer survivors experience more negative impacts on their health and work than salaried workers do, yet they take less disease-related time off than their salaried counterparts [10,11]. Studies further suggest that self-employed cancer survivors are more likely to continue working during their treatment [11] but report worse financial outcomes [7] and more negative financial changes because of the disease [10]. This population also experiences higher unemployment and early retirement rates than individuals without cancer [1]. Canadian self-employed cancer survivors report 37% to 48% greater income losses than employed cancer survivors [12,13,14]. Although Canada has an Employment Insurance (EI) benefit program, registration is relatively costly and subject to stringent requirements. Some of these include having a sufficient contributory period, proving a substantial loss of working time, a payment cap—often below the minimum cost of living in Canada and the US—and a 26-week time limit.
Due to the paucity of research on self-employed Canadians cancer and work experiences [10,14,15], the impact of cancer on self-employed work ability and on their business remain unclear. We know that cancer can significantly impact work ability and that treatment-related side effects and late effects can impact an employed individual’s work status [16]. Work ability denotes a person’s physical, psychological, and social resources for engaging in any type of paid work or self-employment [17]. Given the influence of work participation on identity, quality of life, financial security, and social relationships, as well as its close relationship with employment status, work ability is a major concern for cancer survivors of working age [18], and even more so for self-employed individuals whose business is their primary source of guaranteed income.
To describe the experiences of this understudied population of self-employed people with cancer and work, as well as the impact of cancer on their work ability (physical, mental, and cognitive) and business. the present study posed the following research questions: (1) What were the self-employed Canadians’ experiences with cancer and work? (2) What were the impact of cancer on the self-employed work ability (physical, mental, and cognitive) and their business? (3) What strategies did they employ to continue working or return to work after cancer?

2. Materials and Methods

A qualitative interpretive-descriptive design was used to gather data on self-employed Canadian cancer survivors’ work experiences and strategies to remain at or return to work. Interpretive description is a qualitative research methodology particularly suitable for identifying themes and patterns within human experiences, with the purpose of broadening clinical understanding of a phenomenon that impacts health and quality of life [19,20]. The study recruited eligible participants from across Canada using convenience and snowball sampling [21]. Convenience sampling consisted of recruiting participants who responded to advertisements posted at major cancer centers in Montreal, Québec, and on the Canadian Cancer and Work website [22]. Snowballing entailed asking enrolled participants if they could identify a person in their environment and reach out to them for permission to be approached by a member of the study team. This last strategy identified 50% of the study participants. Inclusion criteria included being a self-employed Canadian adult cancer survivor and speaking French or English. The Institutional Review Board (IRB) granted ethical approval for the study to the primary correspondence author (McGill University Health Centre (MUHC) #MM-2021-6784). Each participant signed a consent form in the same language as their interview. To maintain the participants’ anonymity, a code number was assigned to each.
From 2021 to 2022, 23 semi-structured interviews were conducted over 15 months, with inquiries about work characteristics such as the physical and mental demands of the participants’ jobs, and employment experiences after cancer treatment. The interview guide was initially created using the Vocational Rehabilitation (VR) Model for Cancer Survivors [23], which explains that four factors influence cancer’s impact on work: biopsychological, person-related, system-related, and worksite-related. These four factors can act both as barriers and facilitators to returning to work (RTW) following cancer, and when reviewed in depth, they can help explain the work-related challenges likely experienced by cancer survivors [23]. The biopsychological factors include the presence of treatment side-effects, previous co-morbid conditions, and mental health issues. Person-related factors speak to personal views of work-life and the significance of work. They also include sociodemographic factors such as age and education, which can influence remaining at work or returning to work. System-related factors represent cancer survivors’ surrounding support systems, including healthcare, rehabilitation, financial, family, insurance, and legal resources. Worksite is associated with the job context, job demand characteristics (cognitive, physical, and mental), type of work and work hours, support at work (job accommodations and supervisor/coworker support), and workplace relationships. The VR model for cancer survivors can guide assessment and identify areas for support in the RTW process for cancer survivors [23].
The interview guide included questions to identify self-employed cancer survivors’ strategies to return to or remain at work. Examples of interview questions include: (1) What challenges with work did you experience during and after your cancer treatment? (2) In what capacity did you work during and after your cancer treatment? What helped you to continue to work or RTW? What prevented you from remaining at or returning to work? (3) Were work modifications required to continue or return to work? (4) Has your cancer diagnosis impacted your business's vitality? Three self-employed cancer survivors reviewed the interview guide for relevance and clarity prior to the interviews. There were no proposed changes. When participants agreed to partake in the study, they were emailed the interview guide a few days before the scheduled interview so they could reflect on the questions. The interviews each lasted 45 to 90 minutes and were conducted via Zoom video conferencing.
Data collection and analysis transpired concurrently. All interviews were transcribed verbatim and de-identified to maintain participant confidentiality. The interviews conducted in French were translated by the first author, who is bilingual and whose native language is French. Thematic analysis was first used to identify prominent themes and sub-themes [20]. Content analysis was then used to identify sections and subthemes that represented aspects of the four VR model factors for cancer survivors. The initial coding was collected from the participants’ own words. All codes from the first six interviews were compiled into a single list, and the first and last two authors compared each code to the interview segment to which it belonged to assess coding agreement and refine the words used to represent those codes if necessary. All codes from the initial six and subsequent interviews were entered into an Excel codebook alongside the relevant interview transcript segments. Following an iterative process between the review and refinement of ongoing and new codes, these were grouped into sub-themes and themes in ways that could conceptualize Canadian self-employed cancer survivors’ experiences with cancer and work. To aid in the interpretation of the results within a cancer and work framework [23], the research team iteratively discussed the sub-themes for their possible alignment with the four VR factors (biopsychological, person-related, systems, and workplace) of the cancer survivors' RTW. After all the 23 interviews were reviewed, the team assessed saturation and commonalities in the data, generating an in-depth account of the participants’ experiences as self-employed cancer survivors, and their strategies to remain at or return to work following cancer.

3. Results

The 23 self-employed cancer survivors came from six different Canadian provinces. Nineteen spoke English, and four spoke French. Over half were aged 40–59. The participants portrayed nine distinct cancer types, with 30% having breast cancer, 14 identifying as female, and nine identifying as male. They included storefront owners, family businesses, service providers (e.g., floor and towing companies, accountants, and primary care providers), and independent contractors (e.g., contract writers), with some companies being storefront businesses and others virtual businesses. Table 1 displays the participants’ characteristics, including a breakdown of their job categories according to Canada's National Occupational Classification (NOC) system for describing occupation categories [24].
A thematic and constant comparative analysis of the 23 transcribed interviews yielded four major themes and 12 sub-themes describing cancer’s impacts on self-employment and the strategies used to remain at work with cancer or return to work after recovery (See Figure 1 Impact of Cancer on the Self-Employed Worker). The first three themes concern cancer’s impact on (1) self-employed people’s functions, (2) their ability to maintain self-employment, and (3) their financial well-being; the last theme (4) involves self-employment factors that facilitate working with cancer. Each subtheme aligns with one or more VR factors.

3.1. Theme 1: Impact of Cancer on Self-Employed Functions

The first theme addresses cancer’s impact and its treatment side-effects on the physical, psychosocial, and cognitive functions of the self-employed, and how these factors affect their work. First, participants explained that their cancer diagnosis was unexpected, leaving them ill-prepared for its potential impact on their work ability (physical and mental) and work (business): “You don’t have time to adjust…diagnostic in weeks...you’re supposed to be balancing with work it’s pretty hard” (P2). When first diagnosed with cancer, none of the 23 participants immediately stopped working. Instead, they asked healthcare professionals for treatment on days preceding a period in which they could be away from work, such as those times when their work ability (physical and mental) would be negatively impacted by the side effects of treatment. Consequently, people whose businesses were open during the week—which was almost all of the 23 study participants—requested treatment on Friday at noon to have two full days to recuperate before returning to work on Monday. The ability to work from home aided in managing treatment side effects without participants having to adjust their treatment regimen to accommodate their work schedule. However, one participant who was told about the possible side effects of cancer treatment on their physical well-being decided to change their treatment plan to one with less risk of affecting their physical work ability, such as foregoing chemotherapy and only having surgery. This participant’s type of work was highly physical. At some point during their cancer trajectory, every participant experienced a change in employment status. Following the diagnosis and initiation of treatment, four patients initially attempted to continue working. Due to decreased physical, mental, and cognitive work capacity because of their cancer (see Table 2), they were forced to reduce their work hours and eventually stop working and close their business for an uncertain duration.

3.1.1. Impact of Cancer on Self-Employed Physical Function (Biopsychological VR Factor)

Eight participants found that their cancer and its treatment substantially impacted their physical functioning, affecting their ability to meet the physical demands of their jobs. Two participants with service occupations described how the lymphedema that developed in their dominant arm because of their cancer treatment significantly and negatively impacted their ability to work and factored in their decision to close their business for an undetermined period. A common worry was that the long-term physical effects of cancer and treatment would hinder their ability to maintain the same level of work quality and quantity as before their diagnosis. Participants described how they continued to work despite feeling physically drained: “I had no choice but to return to work two weeks after my last chemotherapy treatment.” “I needed to earn a living, but more importantly, my clients needed me. I was absolutely exhausted” (P 4). When participants were at liberty to make work adjustments to fit their reduced physical ability, they sought ways to “redesign and pivot their work to less demanding [physical] work” (P 6, P12, P18, P17). Challenges persisted even for less physically taxing yet still manual jobs. For instance, a participant whose cancer treatment caused neuropathy in the fingers described how she could no longer accomplish most of her work. Ultimately, she decided to sell her business and try other, less physically demanding ventures. Thirteen study participants decided to temporarily close their businesses for more than one month, or at least 12 months, because their cancer impacted their ability to complete the essential tasks of their work.

3.1.2. Impact of Cancer on Self-Employed Cognitive Function (Biopsychological VR Factor)

Eleven participants described experiencing cognitive changes, such as impaired concentration and memory, all of which affected their mental work capacity and work ability. One participant who never stopped working during her cancer treatment shared how she had “no recollection of ever executing decisions, but [her] signature would be on documents” (P 7). Cognitive alterations during and after treatment ended were particularly worrisome for participants whose work involved their professional licensing. They were concerned that concentration problems could endanger their professional license. Four participants with memory issues found writing things down, via technology or on paper, to be helpful with returning to work. One participant who worked one-on-one with clients would, with their clients’ permission, record their sessions so that they could review the content without worrying about forgetting things. Cognitive fatigue was another concern raised by participants, who felt their mental energy was lower than it had been prior to their cancer diagnosis. The diminished mental energy necessitated a reduction in the daily work hours and weekly number of client interactions. Others opted to contract out the parts of their work that required concentration, instead focusing on other aspects of the business. They said that contracting out also meant taking a pay cut for themselves to save their business. One participant had planned to keep working while undergoing cancer treatment, but her business had to close because of the pandemic. She described the closure as a “blessing” for her recovery (P23), as her cancer treatment had exhausted her physically, emotionally, and mentally. Since her job required considerable thinking, she thought she lacked the mental stamina to maintain the same amount and quality of work as she did before she developed cancer. However, the participant said she would not have been able to take a cancer-related sick leave had she not received the government’s financial assistance for businesses closed during the pandemic. Her business was her only source of income.

3.1.3. Impact of Cancer on Self-Employed Psychological Function (Biopsychological VR Factor)

While the initial cancer diagnosis was a huge shock to all participants, their emotional reactions were wide-ranging. Participants reported being unable to afford a “meltdown.” They had to keep the business running if they wanted to retain an income and their employees’ jobs. “Worry time” was kept to a minimum. Two participants felt that their cancer experiences helped them emotionally connect with their clients. However, for two other participants, cancer made them “[lose] all passion for their company” (P 15) and was “devastating to [their] work productivity” (P 10). Three participants experienced depressive episodes that impeded their work ability, and one felt stuck in this emotional state for eight years following their diagnosis. These participants feared they could no longer provide their clients with the same level of quality work, and they feared making mistakes because the cancer experience had emotionally overwhelmed them.

3.2. Theme 2: Impact of Cancer on Self-Employed Ability to Maintain Their Business

Most study participants either kept working during their treatment or returned to work soon after their treatment ended. The cancer and its treatment had a substantial impact on their ability to perform their job duties. To maintain their company’s operations, they had to continually revise what workplace adjustments and workload could be made to accommodate their fluctuating range of work ability due to the cancer and its treatment.

3.2.1. Impact of Cancer on Those with a Key Position in the Organization (Person-Related and Worksite VR Factors)

Numerous participants concurred that the need to continue working stemmed from their dedication to their business, employees, and clients, as well as the need to continue earning an income. When the business type allowed, participants acquired time to manage their cancer by having some of the day-to-day business managed by others. Those who could rely on others had employees, family members, coworkers, or hired help to take over some of their duties, but these were not viable options for all. Some had difficulty finding suitable replacements to operate the businesses while they recuperated. “When it came to big management decisions,” one participant said, “there was nobody [else]” (P 13). Six participants did hire replacements for a short time to assume the work in part or full, with one participant needing to hire three people to cover all their business roles. Some felt it best not to share the medical reasons behind these temporary hires for fear of losing clients and contracts. Others relied on technological aids such as video and telephone calls, which enabled four participants to continue managing their staff from their hospital beds while undergoing treatment. Even if they owned a one- or multiple-employee business, most participants initially continued working during and after cancer treatment until they realized they no longer could. One participant explained that, except for doctor's appointments, they worked daily, including days when they underwent surgery or chemotherapy (P 9). Four participants chose cancer treatments with fewer side effects so they could continue working. One participant chose to forego chemotherapy because of the potential side effects on their present and future work ability.

3.2.2. Keeping the Business Running for Their Clients (Person-Related, and Worksite VR Factors)

In terms of their business, the participants’ initial reaction to their cancer diagnosis was to maintain service for themselves, their employees, if they had any, and their clients, whether they or an employee directly provided the services. The option of not working during treatment entailed a significant financial loss for participants who were sole proprietors with no other income sources. They were concerned about losing customers if service was disrupted. One participant stated, “If you don’t provide a service, you don’t have a business” (P 12), while another highlighted that “you just can’t expect your business to grow during this period” (P 17). These participants were alluding to the first year following a cancer diagnosis. On the other hand, many participants believed that they would not lose customers if they had to leave work for a short period. To keep the business running, four participants used their savings to hire a contract consultant to perform a portion of the work while their cancer temporarily hindered them from doing so.

3.2.3. Maintaining the Business in Operation for Their Employees (Person-Related, and Worksite VR Factors)

Ten of the 23 participants had employees and felt responsible for keeping the businesses operational to ensure their employees’ continued employment. Out of loyalty to their employees, even those who believed that they and their business could have survived a temporary hiatus refrained from closing. Two participants whose cancer and treatment had reduced their physical and mental work ability shared how they consequently kept their business activity going at a lower level but just enough to keep paying their employees while accepting little to no income because of their own decreased productivity. Another participant kept working part-time but only to secure contracts for her employees, without taking any contracts for herself, as she felt unable on account of her struggles with physical, mental, and cognitive stamina during her cancer and treatment. Depending on the type of business, employees in other situations would provide support by taking on extra responsibilities without financial consequences for the participant’s ability to maintain an income. As such, employees would offer to take over activities that were challenging for the participants, such as heavy lifting, bookkeeping, taking on additional clients, and other day-to-day tasks. Having employees’ support and understanding was viewed as a contributing factor to participants’ ability to maintain the business while going through cancer.

3.2.4. Their Business is Their Legacy and Their Personal Social Network (Person-Related VR Factor)

“My work is my life” was a sentiment shared by all participants. They did not want cancer to define them or become the new focal point of their business. While they acknowledged how challenging it was to have cancer and be self-employed, they remained focused on the health of their business while monitoring how they could incorporate their medical condition into their business practices. Three participants shared a similar perspective that "work is not only my source of income but also my contribution to the world" (P 2). Sixteen participants said they derived a great deal of satisfaction from their businesses' focus on assisting others, and they believed they could continue to do so as they battled cancer. Others likewise described their business as a vital contribution to their community and felt obligated to continue maintaining it, even during the difficult period of their disease. Their sense of being self-employed was marked by hard work, independence, a preference for being “their own boss” (P 2), and not being able to imagine working for someone else. The liberty to choose self-employment meant they could align their work with their personal values and freely express their creativity. For these participants, clients who shared their personal and business values became part of their support system and social networks. The close intertwining of business and social bonds was even more evident for participants who were part-owners of family businesses. These participants viewed the family business context as an incentive to continue working, given the ease with which they could obtain assistance from family members to offset some of their more difficult work responsibilities. They were adamant that cancer would not destroy their professional legacy, which they had worked so diligently to achieve, and that they would fight hard to keep the company operating. While some participants were still in treatment at the time of the interview, not all managed to maintain their business operations, despite having tried hard to compensate during their cancer trajectory, particularly for the first year following diagnosis.

3.3. Theme 3: Impact of Cancer on Self-Employed Financial Well-Being

The third theme describes the struggle of the self-employed to maintain a personal income while going through cancer.

3.3.1. Struggling to Maintain a Stable Income (Person-Related, System-Related, and Worksite-Related VR Factors)

When cancer impeded or altered the ability to maintain business operations, thus affecting their business’s financial wellbeing and their ability to maintain their income, the self-employed had to seek other means to financially support themselves. For some participants, that meant depleting their personal savings, asking family members for financial support, taking out bank loans or resorting to outside sourcing. For participants who perceived themselves as “financially strong,” the impact of cancer on their financial well-being was insignificant, even when their personal income was reduced, or they no longer received a salary after closing or retiring their business. For the financially vulnerable who struggled to remain at work because cancer had affected their ability, retaining an income was difficult. One participant who ran a one-person business stated that employed individuals underestimate the luxury of being able to take paid or unpaid sick days without worrying about losing their sources of income (P 21). Ten respondents reported that their financial situation remained stable throughout their cancer treatment but that they continued to work to maintain an income and keep the business afloat. One participant (P 22) explained that “not having a job or unemployment insurance meant that if you didn’t work, you had no income.” Hence, a quarter of the participants had to borrow funds, deplete their personal savings, or take out bank loans to survive this period of reduced financial income and diminished work capacity.
Eleven participants reported having to rely on their spouses to support them financially while their income was reduced or nonexistent. The few participants who had contracted EI for self-employed or private insurance could rely on these sources of income. While they did not have to worry as much about maintaining an income while they were off work, they nonetheless continued to worry about how stopping work would affect their business’s viability in the short and long term. Some participants happened to be diagnosed during the pandemic when many businesses were forced to close. Being able to receive government relief funding during their cancer treatment was perceived as “a blessing,” as they did not have to struggle to continue working to sustain an income. Still, they had to plan their finances carefully, as the government relief funds were less than what they earned prior to the pandemic and their cancer diagnosis.
Participants who lacked financial stability and lacked spouses or partners who could financially support them resorted to alternative income-generating strategies. While all interviewees stated that owning and operating a business gave them a sense of pride and job satisfaction and that being an employee was not a status they desired, three participants were compelled to seek out salaried employment. They sought employment that was less demanding than their self-employment and that would provide a steady income and health insurance. One participant, who ran a one-person company that provided a service, was no longer able to provide this service due to her cancer and the side-effects of treatment. Having no alternative sources of financial support, she used the GoFundMe platform to create a fundraising page for herself. This page enabled her to receive support from her community, which she said allowed her to focus on her cancer and get through treatment without worrying about her monthly rent.

3.3.2. Financial Impact of Losing Their Gamble to Cancer (System-Related VR Factor)

Seven participants’ finances had become precarious from having to reduce their business productivity and incurring additional expenses because of their cancer. Over 50% of the participants were unaware of Canada’s government-run Employment Insurance (EI) program, which is available to self-employed individuals who meet certain requirements and pay annual premium fees. When enrolled in the program, participants can cover up to 55% of their annual income for six types of leave. A few participants were aware of the EI benefits available for the self-employed, but only one decided to purchase them, with others citing their high cost as a deterrent. The premium per month could reach $500. These participants opted instead to “gamble” that the money saved from not paying premiums would outweigh the cost of falling ill and having to reduce or momentarily cease business operations. As one participant stated, “I chose to take a chance and never need unemployment insurance” (P 22). Eight participants had private coverage. Having private or government EI benefits was viewed as “lifesaving” and as having “lucked out” (P 13) with the timing of their private insurance purchase. Governmental or private insurance ensured some financial security to cover expenses such as business loans and mortgages while concentrating on cancer treatment.
The financial impact of cancer on the self-employed trickled into their personal and professional lives. For instance, when participants had to travel long distances to obtain treatment and even stay overnight, the trips incurred transit and lodging expenses. The temporary unavailability also led to the loss of contracts, as experienced by the self-employed participants working in transportation and operating machinery. As a result of their reduced earning capacity following their cancer diagnosis, two participants sold their homes to cut down on expenses, while two others moved back in with their parents. During the pandemic, the latter two participants transitioned from an in-person business in a local building to a virtual service. By operating the company remotely out of their parents’ homes, they saved money on business and personal rent, which they greatly appreciated because of their decreased work productivity due to cancer.

3.4. Theme 4: Facilitating Factors for Working With Cancer

Factors that facilitated working with cancer included the characteristics of the job, the type of business operated, and the support obtained from external systems (e.g., the healthcare team, family) and the worksite. Additionally helpful were the strategies used by self-employed cancer survivors to assist in maintaining work during and after their cancer treatment.

3.4.1. Ability of the Self-Employed to Manage Their Work Schedule, Workload, and Tasks to Be Completed (Worksite VR Factor)

Facilitating factors for working with cancer highlighted by the self-employed participants were the ability to manage and adjust as needed to their work schedule, workload, and tasks to be completed to accommodate their treatment timeline and their fluctuating cancer-related functional impairments. However, these changes at the workplace still necessitate advance planning to minimize work disruption. Fourteen of the 23 participants had sufficient control to adjust their work according to the level of physical, psychological, and cognitive side effects resulting from their cancer treatment. Three participants had a type of business that allowed them to “close the doors” on days of treatment and a few days after without any major impact on their business vitality. It was easier for participants with employees to make these work adjustments to assist with remaining at or returning to work. As previously indicated, all the participants first tried to remain at work until they realized that the hardship of their condition prevented them from continuing at the same pace, and they had to see how their work situation could be adapted. Four participants with one-person companies closed their businesses for more than one year or indefinitely because their cancer and treatment side effects had diminished their physical, mental, and cognitive capacity.

3.4.2. Support from the Healthcare Team and the Worksite (System-Related, and Worksite VR Factor)

Fourteen participants reported that their healthcare team did not or would not address how to continue working while undergoing cancer treatment. At best, participants would be advised to take a sick day, leaving them feeling unheard and undermined. Since participants were not asked by healthcare providers about their work status, they were required to initiate a conversation about how treatments could be scheduled with minimal impact on their employment. Twelve participants reported that they had developed their own gradual RTW plan. Seven participants who received cancer rehabilitation as part of their cancer survivorship programs, including physiotherapy, found the services beneficial in getting “back in shape for work” (P 3). Not every participant received this support. Three participants who were referred for physical and cognitive assessments as part of cancer rehabilitation were unable to find a free service provider in the public sector. Seven participants who requested psychological support for their cancer-related anxiety and its impact on their work performance were unable to find the assistance they required.
Support from the workplace, such as being part of a family-owned business, made it easier for participants to self-select how much work they could do during their cancer treatment. As one participant shared, “They left the decision to return to work entirely up to me” (P 9). When the support was present, others in the company readily assumed some or all work responsibilities to give the participants time for their cancer treatment. Four participants benefited from family-owned business support. One participant’s uncle took on most of the work, leaving her with under five hours per week. During the first few months following her cancer diagnosis and after her two cancer-related surgeries, the participant benefited from this arrangement. She subsequently returned to her business and was able to manage its day-to-day operations, although having to reduce the number of contracts she undertook in the first year after diagnosis. However, being a shareholder in a family business, even with their support, was not always an asset when choosing to take sick leave during treatment. One participant explained that, at family gatherings, she would be asked when she was planning to resume her company duties, as she was deemed to be “looking good”, particularly after her hair had grown back. However, the participant was still feeling the effects of cancer, such as fatigue, which was impairing their ability to focus and complete tasks. Without the family’s support, sick leave following a diagnosis was marked by anxiety and stress when the institution was a family-run business.
Client support that facilitated working with cancer came in the form of understanding why participants could not take on as much work as before, that it would take them longer to perform, or that they potentially needed device assistance to complete it. Those who had disclosed their diagnosis to clients and received their support did not have to conceal or explain changes made to accommodate working with cancer. For instance, participants with colon or bladder cancer who provided services in people’s homes did not have to explain why they frequently needed to use their clients’ bathrooms. Hence, obtaining support at the worksite necessitated disclosing a medical reason, such as their cancer diagnosis, to explain their absence, their need for a reduced workload, or their need for workplace adjustments. Eleven participants reported disclosing their diagnosis to their clients, who were understanding and supportive. Six participants reported that their clients’ support boosted their spirits and reduced their stress when they needed to reschedule appointments to attend to their cancer treatment. Four participants were hesitant to disclose their diagnosis to clients out of concern that they would be perceived as less capable of performing their jobs or fulfilling the contracts they had undertaken previously. One participant felt obligated to project a “positive and successful image” (P 10) of the business as thriving and well-balanced, despite feeling overwhelmed with managing her cancer and her work. The fear of discrimination and prejudice towards the company's viability was a common worry among the participants. One participant who worked in sales chose not to inform her clients of her condition, worried that they would doubt her long-term capability to complete the contract if they knew of her life-threatening illness. The participant had developed osteoporosis and arthritis because of her chemotherapy, but instead told her clients that she had arthritis to explain her sudden use of a cane at the worksite. Others feared that current or prospective clients would no longer wish to do business with them in case they did not survive their cancer. Another participant who did not disclose her cancer told her clients that she was attending conferences during her absences to receive treatment. Conversely, another participant who initially concealed her diagnosis for fear of discrimination later decided to disclose her cancer and found that her clients were extremely supportive and helped her and her company thrive.

3.4.3. Strategies Employed by Self-Employed Cancer Survivors to Continue and Return to Work (System-Related VR Factor)

While all participants reported receiving high-quality medical care, they noted a lack of support and information from healthcare providers regarding how their cancer could impact their ability to work and what strategies could be implemented to lessen the impact on their ability to continue working. The participants stated that they were the ones who broached the topic of cancer treatment management in the context of maintaining work. When they did ask their healthcare providers for advice, seven participants said that their treatment centers were accommodating, allowing them to “come in when they could and when it was best for them” (P 12). They reported that their healthcare team made efforts to coordinate the treatment plan with their work schedule. Participants explained how they sought to book all their treatments on the same day of the week, enabling them to plan their workload and schedule around their treatment period. Some participants with weekday-based businesses asked to receive their treatment on Friday afternoons to have two days to recuperate before returning to work on Monday. One participant shared that her treatment schedule was an “absolute nightmare” and negatively impacted her ability to maintain her business (P 23).
Four participants shared that they joined a cancer support group and that it helped them exchange experiences of working with cancer. Two participants consulted business mentors for advice on whether to inform their clients and employees of their diagnosis. Except for one participant who was an RTW specialist, no one had ever heard of a vocational rehabilitation counselor in cancer survivorship care to assist with returning to and maintaining employment after cancer. One participant hired a health navigation specialist to assist with planning his cancer rehabilitation and adjusting his professional circumstances to his medical condition. Others incorporated adaptive aids and turned to technology to assist them with remaining at or returning to work following cancer. Those physically impacted by cancer and its treatment had come to use canes and arm sleeves at the worksite. Some participants who were cognitively impaired by their cancer began using memory aids such as lists and calendars, as well as recording their interactions with clients. Others focused on workplace modifications or task reassignments to enable them to perform their duties. They reassigned work to temporarily hired relief workers, family, and staff. One participant “became an expert at project management […] by hiring others to complete the work [they were] temporarily unable to do” (P19). Hospitalized participants conducted video calls and phone conferences from their beds to keep their businesses running.
Overall, the four themes and twelve subthemes illustrate the impact of cancer on self-employed individuals. All 23 participants initially attempted to continue managing and conducting day-to-day business operations following their diagnosis until they realized the impact of their cancer and treatment was too great and they needed to adjust their work conditions. The participants stated that they lacked sufficient knowledge regarding how cancer and its treatment could affect their ability to continue working. They also reported receiving little guidance from the healthcare team regarding how to manage treatment-related side effects and which professionals they could consult for assistance. Being ill-informed regarding the potential effects of cancer on their ability to work during and after cancer treatment, the participants were unable to make proactive adjustments to their business to mitigate the ensuing difficulties. Many were forced to reduce their business productivity, resulting in lost income and potential clients. Others were forced to decide whether to temporarily or permanently close or sell their businesses due to the impact of cancer on their ability to work.

4. Discussion

The four major themes and twelve sub-themes described in the results section reflect the experiences of twenty-three self-employed Canadians with cancer and work, as well as the impact that their cancer diagnosis had on their work ability (physical, mental, and cognitive) and their business. In addition, the self-employed Canadians described the strategies they utilized to continue and return to work after cancer. The characteristics of the subthemes were analyzed to determine their potential alignment with one or more of the four factors of the VR model for cancer survivors [23] to assist in understanding how they manifested in the self-employed experience of being a business owner and working with cancer. Our findings indicate that all 23 self-employed Canadian cancer survivors decided to continue working following their cancer diagnosis. The participants received minimal to no guidance from their healthcare team regarding the late effects of cancer and its treatment or the possible impact on their work ability. Participants struggled to determine how to adapt their work to their medical condition, how long they should plan for these adaptations, and whether they should temporarily or permanently close their business or sell it when cancer-related side effects manifested. Seven participants were eventually left in a position to cease working, close their businesses, sell, or retire earlier than planned. Even when healthcare professionals address the possible late effects of cancer, rarely do these discussions occur within the context of potential impact on work ability [25].
The negative consequences of cancer and treatment, such as cancer-related physical and cognitive fatigue and their possible effects on work ability are well-documented in the literature for salaried workers but less so for the self-employed [26]. However, self-employed people diagnosed with cancer are reported to have a 1.59-fold higher risk of business failure than people without a cancer diagnosis [27]. Although most cancer survivors will see their work ability improve with time [28], self-employed individuals cannot afford to wait for this improvement, lest they risk losing their sources of income—their businesses. In accordance with previous research [11], most self-employed cancer survivors in this study continued to work throughout their treatment. Consequently, balancing the work expectations of their business with their medical treatment, rehabilitation, and ever-evolving work abilities was identified as a significant challenge. Even five to eight years post-diagnosis, one in three breast cancer survivors report poor work ability resulting from their cancer, with cognitive impairment and fatigue inversely associated with work ability [29]. Our findings indicate similar outcomes, with reduced work ability due to cancer affecting the patient’s health, quality of life, quality of working life, and the health of their business. The nature and characteristics of their work (primarily physical, mental, or both) and the extent of their cancer’s impact on their physical and mental work abilities appear to be associated with their ability to manage and balance their work and the effects of cancer. In this study, participants whose occupations mostly required high physical or mental work abilities and who had more moderate to severe side effects from their cancer were less likely to be able to sustain their businesses. In these situations, the majority (>80%) had to make business decisions to reduce workload by refusing new contracts, selling out ongoing contracts, or shutting down their business. Being able to delegate their workload to business partners, salaried employees, or relief workers facilitated their ability to work with cancer and keep their business afloat. Participants whose business conditions were less flexible, whose occupation was more physically than mentally demanding, and who had no employees to perform the work they temporarily could not do because of their cancer appeared to face greater financial burdens and business closure.
Self-employed cancer survivors resorted to various strategies to maintain their businesses despite diminished work ability as a result of their cancer [11]. Some of them reduced business operations, delegated work to employees or temporary relief workers, scheduled work hours during peak energy, and retained only a portion of the less demanding physical, mental, and cognitive work, all while monitoring the financial and organizational viability of this turnover. One participant, whose work was highly physical, chose not to undergo chemotherapy so they could maintain their business operations. This phenomenon of weighing the impact of overall work ability against the ability to maintain work during and after cancer occurs in other contexts and in other populations. In a study of young adults with cancer, their interplay was about how much and for how long they could afford to stop working [30] so as not to fall too deep into personal financial toxicity [31]. In contrast, the question in this case for the self-employed was how much treatment they could tolerate before risking having to close their business due to too great a decline in their ability to work.
Self-employed cancer survivors are less likely to take time off work because of their cancer than salaried workers [10]. Nevertheless, reduced work hours following cancer are more frequently observed in self-employed individuals than in salaried workers [7], engendering a feeling of low work ability. In this study, the needs and desires of the 23 participants to continue working despite experiencing cancer-related work obstacles were multifaceted, beginning with their need to maintain employment in order to maintain a stable income as well as the employment of their employees. Our study found that those whose cancer had little financial impact often worked throughout their treatment, even while in the hospital. Viewing their company as part of their identity, participants expressed a deep responsibility to uphold the company’s viability for themselves, their employees, their clients, and—in the case of family businesses—their families. As a result of the impact of cancer on their physical, psychological, and cognitive work abilities, many participants felt alone, depressed, and overpowered. As Torp et al. [7] note, self-employed workers’ precarious employment status when faced with cancer impairments makes them a vulnerable group.
To help self-employed cancer survivors manage their treatment and business together, professional cancer rehabilitation support is needed [32]. Our participants reported that healthcare providers rarely inquired about their work status—whether they were working, or wanted to remain working, or if they could take time off or had sick leave available to them during their treatment and recovery. The participants remarked that if they had been better informed about the likely side effects of cancer and its treatment on their work ability, they would have been better equipped to prepare for business contingencies. Healthcare professionals could be more helpful to those who are self-employed by first identifying if the cancer survivor is self-employed, what their work duties are, what potential impacts cancer and treatment have on fulfilling those duties, what resources are available to them, or where they could be referred for support [31]. Less than a third of participants were referred to a cancer rehabilitation specialist, and only one was recommended to seek support from an RTW specialist. Yet, when comprehensive cancer rehabilitation is integrated into the oncology care continuum from the point of diagnosis, evidence shows that it maximizes survivors’ functional capabilities [32] and reduces the negative impact of cancer on work. In our study, participants who said they had been referred to, were funded for, or privately obtained rehabilitation services such as occupational therapy, psychology, and physical therapy found it greatly helped with their remaining at work or preparing for RTW. Better systematic cancer rehabilitation support for the self-employed is needed to assist them in retaining employment and a personal income during the first year after diagnosis, along with production-securing measures to prevent bankruptcy or loss of customers [11]. Canada has no automatic sick leave coverage for the self-employed unless they have registered with and contributed to the federal Employment Insurance (EI) plan for the self-employed or a private insurance long-term disability plan.
At the time of diagnosis, healthcare professionals would do well to inquire whether the individual is self-employed and whether or not they intend to continue working during treatment. With this information, healthcare providers could tailor the treatment schedule to minimize the impact on the self-employed individual's ability to work. Early discussions on the potential side effects and late effects of cancer and treatment would also allow cancer survivors who are self-employed to plan for potential adjustments to their businesses to accommodate their changing work capacity. Together, healthcare professionals and self-employed cancer survivors should work as a team to create a cancer rehabilitation plan that could effectively reduce or eliminate functional impairment, prevent disability, and lessen the effect of cancer on work [32]. The plan should incorporate the 12 sub-themes identified in this study and observe how they manifest for each self-employed individual evaluated. To further reduce the likelihood of functional deficits, regular functional screening and monitoring for late effects are recommended, as are interdisciplinary interventions (e.g., physiatry, physical therapy, occupational therapy, speech therapy, nutrition, psychology, onco-neuropsychology, vocational rehabilitation counseling, RTW counseling, nursing) for the identified medical and psychosocial needs.
Although it was not the purpose of this study to document the financial impact of cancer on the self-employed, many participants described how their cancer diagnosis burdened them financially, socially, and emotionally, resulting in the temporary or permanent closure of their businesses. Future research is required to evaluate how cancer affects the financial well-being and, by extension, the quality of life of the self-employed, as well as to provide recommendations for government work policies that would protect the businesses of self-employed cancer survivors during the active cancer phase, such as from the time of diagnosis to the end of treatment. Future research could evaluate the efficacy of a vocational rehabilitation and occupational program to alleviate or mitigate functional impairment, prevent disability, and lessen the impact of cancer on the work ability and business well-being of self-employed individuals.
Given the comparatively small portion of the Canadian workforce comprised by the self-employed—approximately 15% [9]—our qualitative study’s foremost strength lies in its large sample size of 23 self-employed cancer survivors. This diverse working group from eight different NOC job types and six provinces, with representation from Canada’s Francophone and Anglophone populations, helped achieve data saturation, which means that the findings and meanings have been sufficiently developed [33]. The generalizability of our findings to the rest of the self-employed Canadian population with cancer is strengthened by both the heterogeneity and specificity of our study sample. Although our sample contains representation from eight of the ten NOC job categories, it is possible that our snowballing and convenience sampling techniques did not yield a representative sample for the job categories of residents from the more remote Canadian regions, such as Northern Canada or the Maritimes. Those residing in more remote and rural areas likely face greater obstacles and difficulties in adapting their work demands and schedules to the additional travel time or relocation potentially required to receive treatment.

5. Conclusions

The study revealed twelve distinct ways in which cancer affects the overall health of self-employed individuals, including their business and financial health. To effectively alleviate or mitigate functional impairment, prevent disability, and reduce the impact of cancer on self-employed workers, healthcare professionals must pay special attention to these factors when developing individualized cancer rehabilitation plans early in the oncology care trajectory.

Supplementary Materials

Video S1: Testimonial from Frédéric, a Cancer Survivor https://youtu.be/-g_5F9frOQc.

Author Contributions

Conceptualization, C.M. and M.P.; methodology, C.M.; software, C.M.; validation, C.M., M.P., C.W. and F.Y.; formal analysis, C.M., M.P., C.W. and F.Y.; investigation, C.M., M.P., C.W. and F.Y.; resources, C.M.; data curation, C.M., M.P., C.W. and F.Y.; writing—original draft preparation, C.M., C.W. and F.Y.; writing—review and editing, C.M., M.P., C.W., F.Y. and C.L.; visualization, C.M.; supervision, C.M. and M.P.; project administration, C.M. and C.L.; funding acquisition, C.M. All authors have read and agreed to the published version of the manuscript.

Funding

The corresponding author Christine Maheu and co-author Maureen Parkinson were supported by Cancer and Work www.cancerandwork.ca. Two of the co-authors, both master’s students at McGill University’s Ingram School of Nursing, received government funding for their collaboration on this study. Caitlin Wong was supported by a Canada Graduate Scholarship Master’s Award from the Canadian Institutes of Health Research, and Fatima Yashmin by the Ministry of Education and Graduate Studies (MEES-Q) and Nursing Orders of Quebec (OIIQ).

Institutional Review Board Statement

The study was conducted in accordance with the Declaration of Helsinki and approved by the Institutional Review Board of the McGill Faculty of Medicine and Health Sciences (McGill University Health Centre (MUHC) #MM-2021-6784 and date of approval 08/21/2021) attributed to the corresponding author C. Maheu.

Informed Consent Statement

Informed consent was obtained from all subjects involved in the study.

Data Availability Statement

Not applicable.

Acknowledgments

We owe a debt of gratitude to the 23 self-employed individuals who participated in this study so that we could better comprehend what it's like to receive a cancer diagnosis as a business owner who is self-employed.

Conflicts of Interest

The authors declare no conflict of interest. The funders had no role in the design of the study; in the collection, analyses, or interpretation of data; in the writing of the manuscript; or in the decision to publish the results.

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Table 1. Characteristics of the 23 Self-Employed Participants.
Table 1. Characteristics of the 23 Self-Employed Participants.
Age at Time of Diagnosis N %
20-39 4 18%
40-59 12 52%
60+ 7 30%
Highest Level of Education
Did not complete high school 1 4%
CEGEP/college/technical program 6 26%
University 16 70%
Type of Cancer
Breast 7 30%
Prostate 6 26%
Thyroid 3 13%
Lymphoma / Leukemia 2 9%
N of 1 for Other: colorectal, kidney, bladder, brain, stomach 5 22%
Province of Residence
British Columbia 3 13%
Alberta 1 4%
Saskatchewan 1 4%
Manitoba 3 13%
Ontario 9 40%
Quebec 6 26%
Year of Initial Diagnosis
2015+ 13 57%
2005-2014 9 39%
Unanswered 1 4%
Years Self-Employed
>5 years 4 17%
5-14 years 5 22%
15+ years 10 43%
Unanswered 4 17%
Job Classification (NOC)
Business, finance, administrative management 2 9%
Health occupation 4 17%
Education, law, social, community and government services 3 13%
Art, culture, recreation, and sport 1 4%
Manufacturing and utilities 1 4%
Sales and service occupations 9 40%
Trades, transport, and equipment operators and related occupations 2 9%
Retired 1 4%
Table 2. Overview of the Self-Employed Participants’ Work Statuses after Cancer
Table 2. Overview of the Self-Employed Participants’ Work Statuses after Cancer
Work Status after Cancer Participant ID
Remained working following diagnosis and took less than the equivalent of 4 weeks off work during the active treatment phase 5, 9, 11, 12, 13, 19, 21, 22 (n = 8)
Initially attempted to continue working, but ultimately closed the business due to cancer’s impact on their ability to perform essential tasks 15, 16, 20, 23 (n = 4)
Contracted out services/reduced their business role/reduced client or contract load 3, 9, 11, 13, 14, 17, 18, 19, 22 (n = 9)
Changed to salaried work 7, 15, 23 (n = 3)
Retired early 3, 12, 14 (n = 3)
Temporarily closed the business for more than 1 month to at least 12 months 1, 2, 3, 4, 6, 7, 8, 10, 15, 16, 17, 20, 23 (n = 13)
Copyright: This open access article is published under a Creative Commons CC BY 4.0 license, which permit the free download, distribution, and reuse, provided that the author and preprint are cited in any reuse.
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