Introduction

According to the International Agency for Research on Cancer, there were over 18 million new cases of cancer worldwide in 2018, with 43.8 million people surviving within 5 years of a cancer diagnosis [1]. In 2017, the Canadian Cancer Society released a report stating that about 1 in 2 Canadians are expected to be diagnosed with cancer in their lifetime [2]. Furthermore, it predicts that nearly 55% of all new cases of cancer will occur in people aged 20–69 years [2]. Given that working age is normally defined as 15–64 [3], most Canadians who are diagnosed with cancer are likely to be interested in returning to or staying at work as a way to establish normality, social relationships, and enhance quality of life [4, 5]. While approximately two-thirds of cancer survivors are able to stay at work or return to work after treatment [6], epidemiological studies report that cancer survivors are 1.4 times more likely to be unemployed than individuals without health concerns [7]. As a result, there is growing interest in developing interventions and strategies to improve work outcomes and quality of life [8].

Cancer survivors are faced with many physical (e.g. fatigue), cognitive (e.g. “brain fog”), and psychological (e.g. depressive symptoms) adverse effects, in addition to workplace and healthcare barriers, that can make returning to work or staying at work difficult [9,10,11]. The severity of the cancer type and stage, as well as comorbidities, can also make it challenging for cancer survivors to successfully return to work [6, 12]. Supporting cancer survivors on this journey has societal benefits due to increased economic and work productivity [13]. Healthcare providers and workplace personnel are increasingly being called on to develop interventions and attend to work-related issues such as survivors’ abilities and limitations as they impact work [14, 15]. Moreover, environmental factors such as ongoing support at work and from healthcare providers have been shown to be associated with successful return to work [9]. Despite this, information on how to provide these supports throughout the return to work process and what they specifically entail, is lacking [16]. Conducting research to understand survivors’ experience, to learn about occupational and environmental factors that support successful return to work, and how these factors influence the need for these targeted supports is called for [16].

There is a gap in the cancer research when it comes to exploring the return to work experience for cancer survivors [17]. A meta-synthesis of survivors’ work experiences, consisting of a systematic search that yielded 39 qualitative studies, concluded that although studies have identified factors associated with positive employment outcomes following cancer, there is a need to increase knowledge regarding survivors’ perspectives on factors and accommodations that promote successful work outcomes [16]. Specifically, there is a need to better understand the continuous planning and decision-making process regarding return to work. Currently, the literature predominantly focuses on relatively young, white American and European breast cancer survivors [16]. It is important to incorporate more diverse populations of cancer survivors from different backgrounds, locations, and socioeconomic status to broaden the current understanding of how these intersecting factors may influence employment experiences and outcomes [16]. There is also a focus on cancer survivors who are at the early stages of their return to work experience and does not usually consider perspectives on factors relevant to supporting employment once it is obtained [16]. Returning to work is a continuous process, starting with an individual’s cancer diagnosis and lasting beyond their initial reintegration into the workforce. For example, upon returning to work, a cancer survivor might have new unique needs, or different perspectives on the fulfillment and meaning of work [18]. Understanding these perspectives can help assess individuals’ work-related goals and improve targeted interventions overtime to meet these needs.

In Canada, federal and provincial legislations govern the establishment of workplace accommodations and the protection of individuals with a disability from discrimination [19, 20]. Nevertheless, there is great variability in the work-related supports and accommodations that cancer survivors are eligible to receive or access [21]. For instance, some survivors might have access to private disability benefits through their employer and others might receive publicly funded national or provincial disability programs [21]. Understanding the lived experiences of Canadian cancer survivors using a qualitative study design conducted in the diverse city of Toronto [22] and with broad inclusion criteria can help to address the needs of impacted individuals and ensure successful return to work.

There is an urgent need to develop improved employment strategies and policies for cancer survivors [23]. Therefore, the overall research question for this study was: “What are the needs of cancer survivors when returning to or staying in the workforce?” The research objectives were: (i) to examine cancer survivors’ perspectives on supports needed when returning to work or staying in the workforce; and (ii) to explore personal and employment factors that influence the return to work process.

Method

An exploratory, phenomenological qualitative research methodology was used to allow an understanding of, and to learn from, the lived experiences of cancer survivors when returning to work [24]. Qualitative research is useful when gathering meaningful information on people’s values, feelings, and motivations [25]. In this case, phenomenological qualitative research reflects the perspectives of cancer survivors as they grapple with the challenges of returning to work or staying at work after a cancer diagnosis. These perspectives can uncover the processes that are most important to successful return to work and how factors at multiple levels—including personal, occupational, and environmental—can interact with these processes to impact successful return to work [16].

Data were collected in two phases: (1) focus groups with a brief educational component on return to work led afterwards by an occupational therapist (2 h/group); and (2) one-on-one semi-structured interviews in-person with the same participants (approx. 1 h). A combined approach was used because it has been shown in the literature to enhance the trustworthiness and richness of study results [26]. The order of these two phases varied across participants, depending on participant availability and focus group scheduling, to ensure a variety of participants could be accommodated.

This study was given ethics approval by research ethics review boards at the University Health Network and the University of Toronto.

Recruitment and Inclusion Criteria

Participants were recruited from local hospitals and community-based cancer rehabilitation and survivorship programs using purposive sampling [27, 28]. Inclusion criteria were: (1) 18 years of age or older; (2) able to communicate in English; (3) diagnosed with cancer; (4) working part or full time for pay at time of cancer diagnosis; (5) either remained at work during treatment or planning to return to work after treatment.

Sample Description

Fifteen cancer survivors were recruited to this study, all participated in a one-on-one semi-structured in-person interview and due to availability, 8 of the 15 (53.3%) participated in one of two focus groups that were held with 4 participants in each. Demographic and personal information was collected at the beginning of the focus group or interview, depending on which phase the participant completed first. Table 1 summarizes key participant demographics and employment status. ID numbers were assigned to each participant to maintain confidentiality. Also, although it was not part of the demographic survey, it should be noted that 8 of the 15 (53.3%) participants in this sample were visible minorities and for about 7 of the 15 participants (46.7%) English was not their first language.

Table 1 Participant demographic, cancer, and work-related characteristics
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Data Collection

The discussion component of the focus groups used open-ended questions and probes to allow individuals to speak freely about the return to work experience. Participants were invited to the one-on-one interview whether or not they attended a focus group. A semi-structured interview guide was developed to allow for an in-depth discussion on return to work needs and an elaboration of topics that arose in the focus group, as well as additional lived experiences. Specifically, participants were asked questions about their overall experience when returning to work or staying at work following their cancer diagnosis; what has influenced or supported them to make or not make work-related changes (e.g. sense of normalcy, supportive employer, etc.); and what they believe has impacted their needs when returning to work or staying at work. An adequate sample in relation to the study’s research question and objectives was collected so that new categories and themes stopped emerging, and the research question was sufficiently answered [28, 29].

Data Analysis

Each stage of data collection and analysis was supervised and discussed with the research team. The focus group and interviews were digitally audio-recorded and transcribed verbatim by the principal author in order to get familiar with the data. Transcribed data from both the focus group and interviews were analyzed using inductive thematic analysis, as outlined by Braun and Clarke [30]. This data-driven approach ensures that the identified themes are strongly linked to the transcripts themselves. In order to facilitate this analysis, a computer-based qualitative data management software, NVivo, was used to store and organize coded data.

The recommendations of Mays and Pope [31] were followed to achieve trustworthiness and auditability in our study, specifically: using at least two researchers throughout the process for coding and conducting the focus groups; taking reflective notes after the focus groups and interviews; and maintaining a decision trail to document the study process. The credibility of the research was upheld through triangulation of data and of researchers [32]. Furthermore, the data analysis process included reading completely through the transcripts to get familiar with the data and start recognizing preliminary codes, then jointly coding a subset of transcripts to ensure that different perspectives on the data were considered when developing the codes.

Results

This paper discusses four key themes that emerged in the thematic analysis that addresses our research question on the needs of cancer survivors when returning to or staying at work. The first explores survivors’ perspectives on self and work. It includes shifting meaning of work, and stigma influencing self-perception following a cancer diagnosis. The second demonstrates how managing work and social systems can be challenging for cancer survivors. Theme three illustrates the difficulty of determining disclosure when requesting symptom-related accommodations. Lastly, the significance of supports for return to work and daily life are shown in the fourth theme. These themes and their corresponding sub-themes are mapped out in Fig. 1 below.

Fig. 1
figure 1

Thematic analysis exploring needs of cancer survivors when returning to or staying at work. *RTW return to work, HCP healthcare professional

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Theme 1: Changing Perspectives on Self and Work

Key aspects of changing perspectives on self and work were captured in our data and focused on the meaning of work, readiness to return, and how stigma can influence self-perception of work ability. The impact these new and fluctuating outlooks have on return to work after cancer is discussed below.

Perceptions and Meanings of Work

Participants shared how they define work and how their outlooks have shifted throughout their journey, including changes in the importance they now attribute to work. For many participants, work contributed to their identity, sense of normality, health, and social relationships. Not being able to work and thereby losing a sense of identity was difficult.

#13: The main part of all this is identity. Identity.[…] It’s like I work for this company and I’m a this andI’m a that. Now, I’m unemployed, I’m on disability.

Furthermore, participants’ changing perspectives shaped their priorities when returning to work, with many participants attributing less importance to work and now seeking more work-life balance than before. This newly acquired importance of health and well-being is illustrated in the following quote:

#15: Life is important. Money isn’t everything. Career is not everything. Your health is the most important thing, because if you don’t have your health, you don’t have anything. Money can’t buy you health, you know? It can’t change a cancer diagnosis. It can’t change chemotherapy. It can’t change radiation. It can’t change your fingers going black, your tongue going black, losing all your hair.

Evidently, for some, the monetary gains and fulfillment from going back to work cannot outweigh the importance of maintaining health through work-life balance and making career less of a priority. However, not all participants shared this outlook on work:

#13: I’ve heard people share that they feel different about it and all of this stuff – I don’t! Because to me, I get validation from working, I get, um, relationships from working. All of these things that I get from working has not changed at all.

Reflecting on Return to Work: Feeling Ready

Throughout the return to work process, cancer survivors inevitably found themselves reflecting on their readiness to return and what a successful return to work would look like to them. This contemplation also included realizing how psychosocial symptoms, such as feeling anxious or stressed, impacted returning to work. Primarily, participants discussed what it meant to “feel ready” to return to work, and how difficult it was to ever feel completely ready to go back. Feeling ready to return involves many different elements, such as emotional, mental, and physical readiness. For some, assessing their readiness is not as straightforward.

#13: So, in all honesty, the desire to go back to work is 100%. The ability to go back to work, I don’t know, it’s not for me to judge, because they say you will never feel like you should – like you are able to go back to work.

Despite this, participants stated they know it is important not to return before they are ready.

#15: What’s the purpose of going to work when you’re not ready and all you’re going to do is leave? […] When I’m ready to go back to work, I need to hit the ground running full speed ahead. Just like how I used to. And I’m not there yet.

According to participants in this study, successful return to work can be supported by understanding their perspectives on what an ideal return to work looks like. A successful return for some involved knowing how much time off they needed, though this can be difficult to approximate. It is clear that taking the time to be ready to return is important, but participants shared that sometimes they are caught in a situation where they do not want to be taking too much time off work either. Some sought help from healthcare providers who understood their unique goals and facilitated their ability to return to work successfully. This includes managing cancer-related physical and psychosocial symptoms such as anxiety and stress which can impact return to work readiness.

#14: With the brain fog comes the stress and anxiety because it’s like oh my gosh, I want to do my job, I want to do it well, and I want to perform to the level I performed before – will I be able to?

Managing these emotions helped survivors feel better equipped and ready for a positive return to work. Thus, reflecting on returning to work entails thinking about these psychosocial issues and how they impact feelings and ability to return to work.

Stigma Influencing Self-perception

In addition to participants’ changing perspectives on work, they also reported a shift in how they perceive themselves. They explained that this change can be attributed to the burden that they feel, and how stigma influences their self-esteem and return to work. Study participants voiced that they felt like a problem to the people around them because of their cancer. This includes feeling like a burden on society as a whole, as well as to coworkers and family members. The following quotes illustrate these sentiments:

#12: Sometimes I feel the stigma, like, you know, I’m not working…so what does that mean, that I’m not a valuable member of the society, or what?

These changing self-perceptions that developed through the cancer journey can influence an individual’s self-esteem and negatively impact their confidence. This experience can take a toll on a survivor’s ability to maintain a positive outlook during the process of returning to work.

#13: My self-esteem was extremely low prior to this, but cancer and work and all of that […] now it’s gotten even lower. Because, you feel you are getting older, now you have this black mark against you because of cancer.

Theme 2: Managing Work and Social Systems

This theme highlights cancer survivors’ experiences with needing good quality and accessible resources, as well as assistance navigating and communicating throughout various social systems. These can include employment, insurance, and healthcare organizations.

Quality and Accessibility of Resources

Participants felt it was important to have access to resources that meet their unique needs when returning to work. Some study participants felt that they had access to enough individualized resources for a successful return to work. Specifically, many of the participants in this study mentioned that community-based centers for cancer survivors played a big role in offering resources that met their needs. This breadth of workshops and programs specific to cancer survivors and their needs have proved to be very helpful for our participants who accessed these services when returning to work.

#15: They have a financial program. They have some exercise program.[…] They have meditation programs. They had some career training stuff. […] The workshops they have to help you get ready. […] They talk about legal issues, return to work issues, employment law, long-term disability. So, they attack all those key things.

However, not everyone is offered enough resources to meet their needs, as cancer survivors have more specialized needs that should be addressed to facilitate returning to work. Some participants were frustrated by the lack of training resources to improve their job-specific skills for when they return to work. Other participants would have appreciated more information about their legal rights when returning to work. This is particularly important for survivors who are worried about how they can stand up for themselves if their company tries to prevent them from returning to work. Access to these additional resources has the potential to improve a survivor’s ability to return to work.

Study participants observed that sometimes resources were simply inaccessible to them and required a significant amount of work for them to access. They indicated that cancer survivors are expected to search for resources on their own, despite the hardships they are likely already enduring. Similarly, some participants feel there is still a gap in accessing the resources that they need to return to work. The following quotes support these experiences:

#12: It’s very hard for us cancer survivors dealing with what we are dealing [with] and on top of that try to find our own way and our resources. […] So that should not happen.

#13: I have been very, very proactive. I have found a lot of resources for myself. […] The resources are there, but not enough. There are still a lot of gaps in the resources that we need.

Some study participants offered solutions to these problems of limited accessibility of resources. Suggestions consisted of a one-page summary sheet of the various resources available and who to contact for specific needs, as well as making sure that resources are provided early on in the cancer journey and are continuous throughout the transition and re-integration into the workplace. It was also mentioned that it would be helpful if healthcare professionals knew more about the available resources. Understanding these perspectives can help with making recommendations to create a better process for cancer survivors in the future.

Navigating the System

Navigating the way back into the workforce was seen to be a difficult process, but not every study participant had a bad experience navigating back into work. Some participants experienced systemic barriers, some needed professional help, and others had few troubles at all. Participants who had prior knowledge of the health and insurance systems, typically through their experience as healthcare professionals, had an easier time when returning to work. Other participants, despite not having this specific insight that healthcare professionals do, were also able to have an easier time returning to work and navigating the process when they received well-defined assistance from employers and insurance personnel.

Nonetheless, many study participants did have a negative experience while managing their way back into the workforce. For some, these hardships were influenced by having to lead their own return to work plan, which was stressful and uncomfortable. Participants clearly identified a need for professional help to get over these challenges in navigating systemic issues and getting back to work successfully.

#15: The whole thing was trouble. I didn’t even know what I was doing. […] There was so much…phones, emails to send […] so many people. I couldn’t understand anything, it was just so much. That’s why I needed the help, because I couldn’t figure out all these forms.

#12: That’s a gap – navigation is terrible. We know how hard it is to navigate the health system, now imagine navigating the insurance system when we are not familiar with that. It’s terrible. There is no way – we need a navigator.

Communication Within the System

Participants emphasized that an important part of navigating into the workforce is communicating with stakeholders throughout the system, including colleagues and employers at work, insurance providers, and healthcare providers. Often, intercommunication between these stakeholders can help with navigating this process.

The majority of the stakeholder communication that was required by participants was at work. Despite talking about feeling stigma at work, some participants felt comfortable discussing their experiences openly with their coworkers in order to ease the transition back into work. However, communication with managers and leadership at work was not as straightforward for other participants where some had little communication at all. A few survivors found this particularly distressing and confusing. Moreover, a lot of the time, participants were instructed to only communicate with insurance and were not allowed to have contact with their workplace, which they would have preferred. Participants speculated that this is because of a lack of understanding of legal and insurance issues on the employers’ part. This experience was confusing and stressful for many participants, as it left them with a lot of uncertainty about their ability to return to work and whether they were communicating appropriately.

#12: Lack of communication with the insurance and with the employer because I don’t feel confident or comfortable talking with them. I don’t know how they will interpret the information. So, it is hard, and this is not just me. This is a constant that I see, I’ve seen through my whole journey – talking with people in different stages in the process, that the stress and the not knowing what and how to communicate with the insurance and the employers, it’s so high. And that’s ridiculous. Because it’s not helping anybody.

Survivors felt that it is important to educate organizations and employers to make sure they are supportive and facilitating communication with their employee while they are off from work. This support can help the survivor return to work more easily, which can also benefit the employer.

Another stakeholder group that participants had to communicate with when returning to work included healthcare professionals. The experiences that participants had with this group varied. Many participants thought that healthcare professionals were good at communicating with them. Importantly, healthcare professionals were perceived to be more effective at helping participants return to work when there was communication between healthcare providers. On the other hand, some felt like there was a lack of inter-communication and that this was a big problem.

#13: They are so compartmentalized. I go in for A, B, C and I may be asking my surgical oncologist and he’ll say ask your family doctor.[…] I think a conversation is valid, and they don’t do that.

Fortunately, some participants were able to benefit from effective communication amongst stakeholders. For instance, participant #14 described how her healthcare professionals and insurance company had “these conference calls every couple of weeks and then they gave me an update on the call.” Getting survivors involved in this communication is an excellent and useful way to keep everyone on board with their progress returning to work.

Theme 3: Determining Disclosure and Accommodation

This theme elucidates how cancer survivors manage to handle the stigma they face disclosing their diagnosis and symptoms, and how this experience is related to their ability and needs to receive appropriate accommodations at work. Specifically, a more focused perspective on requesting symptom-related accommodations is discussed.

Requesting Symptom-Related Accommodations

Study participants benefited from being able to request accommodations at work that helped to alleviate the symptoms they were experiencing. This process involved dealing with the dilemma of whether or not to disclose their diagnosis to receive the help that they needed to return to work successfully.

Requesting accommodations to reduce the impact of symptoms when returning to work was seen to be important. For instance, almost all of the study participants discussed how a gradual return to work would be beneficial for dealing with symptoms of fatigue. Other adjustments like working from home if possible and taking breaks during the day were suggested as ways of improving the return to work process. Depending on the nature of the job and unique cancer-related experiences, there were a variety of other kinds of accommodations that study participants found useful. The quotes below illustrate a couple examples:

#6: My dry mouth is a big problem because I talk to patients all the time. […] I’m always chewing gum which is like clearly like unprofessional, but I told my manager like I have to chew gum at work – and then I have a water bottle and then a spray and then my mouth care.

#9: I asked for a closer parking spot […] I am glad that I did it because […] even if I could sleep in just 10 more minutes, it’s totally worth it.

Unfortunately, not everyone had a straightforward experience with requesting accommodations to meet their return to work needs. Many faced challenges with stigma that influenced disclosure and ultimately if they would receive any work modifications. This stigma, particularly directed at the invisibility of the illness, impacted accommodations and whether or not survivors felt comfortable to disclose their diagnosis and associated symptoms. Many struggled with the dilemma of whether or not disclosing would be the best option for them. For instance:

#11: When you say fatigue, people think that you are lazy, right, you know? But it’s a different type of fatigue, right? You sleep but you still wake up tired. Just they don’t know it – that’s why they cannot understand it. […] But it’s hard to you know. […] If you disclose it, they are not going to hire you. I am sure they are not going to hire you. If you don’t disclose, it’s, you know, I would feel uncomfortable.

#13: How do I tell my employer, you know, I suffer from brain fog, and it may or may never go away? Am I going to be the next candidate for the next promotion? So, even if I get the job, can I keep it? […] There are so many road blocks to not disclosing, and once you disclose, you stigmatize yourself. […] So, I don’t know if I should, because I want special accommodation, because I need special accommodation, because of whatever. Would it benefit me to do that or not?

Evidently, not only might survivors be uncomfortable and stigmatized for disclosing, but they would also likely not receive the accommodations that they would require to meet their needs and improve their wellbeing. Even when some survivors did make the decision to disclose, they did not receive the accommodations that they needed. Being able to receive the accommodations they need to be able to go to work would mean a lot to cancer survivors, but unfortunately disclosing their needs can sometimes work against them and can led to further stigma and discrimination. Overall, accommodations can help manage symptoms at work when they are provided. However, knowing when to disclose to receive these accommodations can be difficult for cancer survivors who are not readily offered these supports.

Theme 4: Importance of Supports for Return to Work and Daily Life

This theme explores the various types of support that participants received, or would have wanted to receive, throughout their journey to help them return to work and improve their wellbeing. These supports should be ongoing and come from the work environment, insurance companies, family and friends, as well as healthcare providers and related community supports.

Supportive Work Environment

In general, to study participants, a supportive work environment consisted of ongoing, emotional support and understanding from employers and coworkers. Some study participants were fortunate to have experienced support from their workplace throughout their return. A confidential and respectful environment helped foster these feelings of support. This was achieved by feeling understood and accepted by colleagues and managers, not being rushed back to work too soon, and also being able to share duties amongst staff. Emotional support was also a key factor in feeling supported returning to work. This was especially evident if the individuals providing support had any lived experience with cancer themselves.

When these positive aspects of support at work and others were not present, participants felt their absence. In particular, cancer survivors felt that there was a gap in workplace support when their limitations were not accepted and when there was a lack of understanding and acknowledgement of their situation.

#6: I just wanted somebody to say, hey how’s it going? And I was missing that point throughout, well, to this day no one has asked me how I’m doing. It’s just weird. It would have given me again the opportunity to say I need something, X, Y, Z. Versus putting it on me to ask for it. […] So, just having somebody say how are you coping, how does it feel to be back, how are you doing? Would have been a good opener into having a conversation about what I needed without having me to bring it up.

Ultimately, one of the most significant gaps for study participants was the lack of ongoing work support. This lack of continuing support throughout their journey negatively impacted their return to work. The provision of ongoing emotional support at work can have a significant influence on a participants’ journey.

#6: So, I felt very well supported while I was off. And very encouraged to go back, but then when I got back it was almost like, she’s back, and don’t mention a thing and she’ll be back to her normal duties. […] Nobody was supporting me to say how are you doing, does it feel okay? […] So, I found that to be interesting because I would have expected that would continue on while I was back.

Interacting with Insurance Companies

In addition to support from employers and coworkers, cancer survivors may have received supports from insurance companies through their interactions going back to work. For some, insurance companies were present and helpful, yet others dealt with pressure and stigma due to the lack of support.

Firstly, several participants had a positive experience when interacting with insurance companies. These positive interactions were shaped by ongoing check-ins, encouragement, and understanding from insurance personnel. On the other hand, many study participants did not receive the same encouraging support when interacting with insurance companies. Some survivors experienced pressure from their insurance companies to return to work before they were ready.

#12: I was forced to go for a return to work program with the insurance company when I was not ready and that was a failure. And a failure for them, failure for me, failure for everybody – that ended in a lawsuit. And that doesn’t help anybody. It’s just ridiculous and it’s just because a lack of understanding and empathy and compassion or adjudicators in the insurance company that don’t understand the unique issues that a patient or a person suffering with cancer has.

This lack of targeted support was also experienced by others who felt that their unique needs and experiences with invisible disabilities were not being taken into account or believed when negotiating their return to work. As a recommendation on how to improve interactions with insurance and cancer survivors returning to work, one participant proposed:

#12: What I would love to have […] from the insurance […] hopefully [is] a clear support and guidance, tools, conferences, interviews, one-on-ones, explanations – things that make us understand their way of assisting and how can they support us and what can we do.

Family and Friend Support

Outside of the work environment and insurance companies, family and friend support played a significant role in helping participants improve their wellbeing to feel ready to return to work. Overall, study participants benefited from the emotional supports they were provided from their loved ones. This includes various acts of kindness from supportive families, spouses, and friends. In particular, participants appreciated the support they received from others when they were treated normally and encouraged to pursue their return to work goals. Some survivors achieved this by getting help from individuals who had their own lived experiences of going through cancer, since they better understood their situation.

#9: My friends have been supportive, and I felt like they really treated me going back to work as like a very matter of fact thing. Like oh, of course you’re going back to work! Whereas like other maybe people might, might say like oh you’re crazy, why are you going back to work? But my friends like know how important my work is, and they just, it was like really like obvious to them that I was going to be going back and we just normalized that process I think.

There were gaps in family and friend support that were pointed out by several study participants. Some felt that family support was ongoing, whereas support from friends tended to fade over time, despite cancer being a chronic experience. Specifically, many cancer survivors wished for more emotional support and understanding of participants’ perspectives and limitations, despite it sometimes being hard for loved ones to accept.

Experience with Healthcare Providers and Community Supports

Lastly, experiences with healthcare professionals and related community supports were reported to have an impact on going back to work. This includes addressing return to work needs, understanding the individual’s perspective, and supporting their goals. Many of the study participants had an overall good experience interacting with a wide variety of healthcare professionals.

#6: I adore my team, I have had nothing but exceptional care. […] My surgeon is insanely amazing, my oncologist is great, the speech therapist, the dietician, the radiation technicians, I loved them.

In particular, advice from healthcare professionals on returning to work was appreciated. For some survivors, hearing from a healthcare provider that they were not ready to go back to work yet or that they should reflect on their own ability to return to work was valuable because it prevented them from going back before they were able to do so successfully. For other participants, advice was provided in the form of specific recommendations.

However, some study participants were not given any advice on returning to work from healthcare providers. In a few cases this lack of advice was due to survivors feeling like it was outside the realm of expertise for some professionals, but there are others who did ask for guidance on returning to work and were not provided with any.

#13: Not one of them offered me [return to work advice]. I’ve asked, and I’ve asked, and I’ve asked, and I’ve asked. Zero. […] My family doctor – she won’t mention it. I’ve asked, I’ve gone to see internists, I’ve gone to see oncologists, I’ve gone to see – they don’t talk about it. Not one of them said I think you’re capable of going back to work […] or not one of them said I don’t think you’re capable of going back to work. They don’t discuss work, period.

Survivors would appreciate being given recommendations and insight into what to expect returning to work, while making sure that their perspective is in agreement with the healthcare professional’s opinion. In order to achieve this, participants hoped that their healthcare professionals would understand their individual needs and support their wishes by trying to achieve a common goal. In cases where survivors were given conflicting information from professionals about their ability to return to work, many found it frustrating and discouraging to not be supported.

#9: I thought that was really not realistic of them and it wasn’t very holistic of them. […] I found that very discouraging, their attitudes toward me returning to work. And I know part of it was because my job is so physically demanding, but I also thought it, it lacked certain respect for my ability to self-assess myself and say that I’m capable of doing this. Then I had like one doctor who was more of someone we consulted with who did encourage me to go to work and I thought that was really, like it’s a good doctor.

There are other gaps in the support provided by healthcare providers that study participants have identified. This includes limited time with healthcare professionals, the lack of ongoing support, and the need for more education. Thus, participants emphasized that professionals must take the time to provide ongoing, targeted return to work advice that meets cancer survivors’ unique needs.

#12: I will say that support from the healthcare providers […] at the beginning they are there because I think their goal is just to fix you, or to save you, so they want to be involved. And then the interest just fades. […] And I see that as an opportunity really if you guys want to do something meaningful for the patients. Think about that gap. […] The lack of education for the healthcare providers guiding patients to go back to work is huge. And it plays a big issue.

Some participants offered suggestions on how to improve return to work support from healthcare providers by building stronger and more respectful relationships where the survivor’s experiences are appreciated. For instance:

#12: A deep conversation with the patient, because many times the healthcare providers don’t know exactly what the job description or the tasks is. And just to say that the patient looks good, it doesn’t mean that they are ready to go back to work.

Finally, it should be noted that the aforementioned community-based centers within the healthcare system for cancer survivors were also a valuable support for study participants. These supports are significant because of the opportunity to be in a supportive environment where the participants and healthcare providers were able to meet unique needs—particularly through return to work workshops. These group sessions also provided survivors with direct insight from other members about their own experiences returning to work which was valuable for many participants on their own journey.

#15: It’s so important to recovery […] to know people are going through similar things, similar challenges, it’s just, it’s therapeutic, it really is.

Overall, participants reported that their experience with healthcare providers and related community-based supports had a significant impact on their return to work. They suggested that these supports should be provided throughout their journey and should do their best to appreciate the unique desires of each cancer survivor.

Discussion

This study sought to broadly explore the needs of cancer survivors returning to work, in order to better understand their perspectives on supports and how personal and employment factors can impact these needs. This exploration enhances existing knowledge and begins to fill the gaps in the literature, by exploring perspectives of diverse Canadian cancer survivors before and after returning to work, and the impact of accommodations and ongoing supports [9, 16]. The central findings of this study are reflected in the four identified themes: changing perspectives on self and work; managing work and social systems; determining disclosure and accommodation; and the importance of supports for return to work and daily life. These informed strategies and recommendations below that contribute to Canadian cancer rehabilitation research to help cancer survivors return to work successfully.

Recommendations

Together, these themes and their subthemes suggest that cancer survivors may need: time and opportunity to come to terms with changing work capacity, work identity and centrality of work; help dealing with the dilemma of disclosure and determining workplace accommodations; professional assistance navigating the system to streamline access to resources and ensure effective communication across different sectors; and ongoing, targeted support from many different stakeholders to meet their unique needs with a focus on peer-support. These key findings and their respective recommendations will be discussed below, highlighting interesting findings.

Time and Opportunity to Come to Terms with Changing Work Capacity, Work Identity and Centrality of Work

Cancer survivors in this study revealed that they need the time and opportunity to come to terms with changing work capacity, work identity and centrality of work after experiencing cancer. Adequately reflecting on and considering these changing perspectives can prepare cancer survivors for a more successful return to work. Study participants explicitly discussed the need for time to re-evaluate work-life balance post-cancer diagnosis. Changing perspectives shaped their priorities when returning to work, specifically by seeking reduced hours to make more time for activities, such as self-care and spending time with family and friends, which improved well-being. A qualitative study on breast cancer survivors’ views on the return to work process also found that survivors experienced cancer as a significant life event that inspired them to make social and family life a higher priority than before their diagnosis [33]. In particular, these findings included the participants’ interests in focusing on a more balanced approach by decreasing hours and pacing themselves, findings which also emerged in this study.

Given the significant life events and the many physical, emotional, and psychological impacts, participants agreed that it is difficult to feel completely ready to return to work after cancer. Thus, study participants expressed the need for help determining their capacity to return to work. A qualitative study exploring work readiness in cancer survivors also found that these domains are important determinants, and that the complexity of cancer is what makes it difficult to accurately determine work readiness [21]. Participants in our study explained that they needed to find the right balance between taking the time they needed, and not staying off for too long, to return to work successfully. The general return to work literature for injured workers and those with invisible disabilities, such as traumatic brain injuries, is in agreement that returning to work too early can increase the chances of an unsuccessful return to work [34, 35]. On the other hand, a study on work readiness by Stergiou-Kita et al. [21] reported that returning to work too late can jeopardize a survivor’s employment and financial stability. Therefore, cancer survivors need help, perhaps from an occupational therapist with the use of worksheets and exercises, to accurately determine their capacity to return to work to better prepare and plan for a timely and successful transition.

Another significant finding is that cancer survivors need the opportunity to come to terms with their changing notions of work identity. For instance, participants discussed work identity, particularly with regards to feeling like a burden to those around them. Some study participants expressed that they specifically did not want to bother their friends and co-workers with their cancer-related problems. Interestingly though, a scoping review on stigma and work provides some evidence that opening up to family members can actually help survivors overcome these feelings of being a burden [36]. The implications of this finding are that cancer survivors could benefit from assistance to feel more comfortable at work by discussing their feelings with loved ones and in the workplace. Education should be provided to survivors, family members, and employers to help them overcome these barriers together, through workshops and meetings throughout the return to work journey.

Help Dealing with the Dilemma of Disclosure and Determining Workplace Accommodations

It was also expressed by study participants that they need help determining workplace accommodations and dealing with the dilemma of disclosure. Participants who did not receive accommodations in the workplace had a more difficult time trying to stay at work. Survivors explained how they were able to manage their cancer-related symptoms at work by requesting specific accommodations. The most common request was for a gradual return or reduced hours to deal with the prevalence of cancer-related fatigue. This result is seen in other studies where the majority of survivors also requested less working hours in order to manage their symptoms [37]. Being provided these accommodations to reduce the impact of symptoms when returning to work positively impacted participants’ journeys. Likewise, it has been previously shown that accommodations to reduce working hours and limit physically demanding tasks supports cancer survivors to accomplish their work-related goals [38, 39]. It is important that cancer survivors are able to request these accommodations, because without them symptoms such as fatigue and depression can get significantly worse [37, 40]. Therefore, this current study recommends that appropriate measures are taken to ensure cancer survivors are provided an accommodating work environment that meets their unique needs. These accommodations could be achieved by helping cancer survivors recognize the adjustments they need and educating the workplace on how to supply them.

The process of deciding whether or not to disclose their illness in order to receive accommodations to facilitate return to work was a challenge many study participants had to deal with and expressed needing help with. Specifically, participants wanted to be viewed as “normal”, since they were scared their symptoms, especially invisible ones like fatigue, would not be believed and that disclosure would prevent job promotions and accommodations. In general, there were participants in this study who both did and did not decide to disclose their diagnosis. This decision depended on the individual’s personality, values, and comfort at work. Reaching informed decisions about disclosure is important for return to work and can affect the provision of accommodations and ultimate work success [36, 41].

To meet this need, it is recommended that: education should be provided to the workplace on addressing misperceptions regarding cancer and work ability, to enhance awareness of stigma in order to reduce its impact and to create a more comfortable work environment; and advocacy efforts at work should be encouraged to empower cancer survivors with the information they need to fulfill their employee rights to accommodations [36]. These measures are important as a literature review on employers’ attitude towards people with disabilities found that, although employers reported positive attitudes towards these individuals, their hiring decisions, worker performance reviews, and provision of accommodations were negatively impacted [42]. Engaging cancer survivors in the development of these policies to protect their rights would be beneficial to enhance understanding of their needs when requesting accommodations [41]. For cancer survivors who choose not to reveal their cancer diagnosis, there should be an accessible option for them to receive symptom-related accommodations without the need to provide unnecessary personal information.

Professional Assistance Navigating the System to Streamline Access to Resources and Ensure Effective Communication Across Different Sectors

Another key recommendation is the need for professional assistance navigating the system, and streamlining access to resources, as well as ensuring effective communication across different sectors. According to participants, there were too many stakeholders and administrative processes that they had to coordinate on their own, which was overwhelming given they were also faced with dealing with their cancer diagnosis. Many studies have also found that cancer survivors are left to navigate and negotiate return to work issues on their own, mainly due to a lack of resources to assist them with the process and a void of informed guidance [12, 43, 44]. In particular, this study and others suggest the increased use of occupational or vocational therapists to take on this navigational role, with an added focus on accessing resources and facilitating communication, since they are well positioned to address these gaps and understand individual survivors’ needs [43].

Professional guidance can address the need for more targeted, unique, and accessible return to work resources. Suggested solutions to the current inaccessibility of these resources includes widespread dissemination of a comprehensive checklist of targeted resources that would cover all aspects of the transition into the workforce, from diagnosis to return to work. Informative resources have the potential to educate and empower cancer survivors to return to work [45]. Therefore, a comprehensive, accessible and individualized approach using professional guidance can reduce the current difficulties that cancer survivors have with a lack of available, specialized resources going back to work. For instance, the cancerandwork.ca website does a good job of addressing this gap, although not all cancer survivors and stakeholders know about this resource.

An additional need discussed by participants, which can also be addressed through professional guidance, is for increased intercommunication amongst system stakeholders and themselves. For cancer survivors, clearly communicating their needs to stakeholders is vital to support successful return to work [46]. These stakeholders, as identified by study participants, include co-workers, employers, insurance providers, and healthcare providers. Effective communication with employers and colleagues helped with guiding the return to work process and successfully reintegrating back into work after cancer [44, 47]. This finding substantiates the recommendation that stakeholders in the workplace should be educated on how to improve communication with cancer survivors to better understand their needs and enable a successful return to work.

Participants also discussed how a lack of communication between stakeholders significantly reduced their ability to navigate the return to work process. This point further substantiates the call for coordination and assistance from professional services with navigating communication when returning to work. Much research shows that improving communication between stakeholders can fill an important gap and support successful return to work [21, 47, 48]. This communication should be framed in a way that is in agreement with the individual’s specific work context for optimal results [21]. This current study upholds these recommendations, and suggests that overall, in order to meet cancer survivors’ needs when navigating back to work, the implementation of above-mentioned professional services could be most effective. This suggestion is significant because this professional assistance can help provide a streamlined and targeted navigational approach to accessing resources and effective intercommunication—both of which are needs that participants identified they require when managing their return to work.

Ongoing, Targeted Support from Many Different Stakeholders to Meet Unique Needs, with a Focus on Peer-Support

Participants in this study called on the various influential stakeholders in their lives to provide the support they needed: healthcare providers, workplace personnel, insurance companies, and family and friends. Additionally, peer support from individuals with a first-hand experience of cancer was reported to be particularly helpful across all of these environments, especially at community-based centres.

Study participants discussed how they found receiving advice on returning to work specifically from health care practitioners to be beneficial. This finding is related to the previous recommendation for professional guidance, particularly from occupational or vocational therapists, to ease navigation and support successful return to work through efforts such as facilitating communication and creating return to work plans. A qualitative study on return to work after cancer also found that participants were positively impacted by obtaining personalized work advice, and wanted to receive even more [17]. To achieve these specific needs, participants in this current study suggest that healthcare providers educate themselves and set aside enough time to have meaningful, ongoing conversations with survivors. It is critically important to train healthcare providers treating cancer survivors with the information they need to be equipped to provide specific work-related advice, such as when to return and what treatments to seek, or at least appropriately direct cancer survivors to established professional services that can fulfill this need.

Further, it is important to ensure ongoing, emotional support and understanding from employers and co-workers to cancer survivors in the workplace. An appreciation for their needs and limitations helped with distributing duties, feeling more comfortable at work, and receiving aforementioned accommodations like enough time off work. It is suggested that emotional support should be offered ongoingly to adapt to cancer survivors’ changing needs at work [49]. Individuals in the workplace should seek to support cancer survivors from the beginning of their journey and well after they have returned to work for optimal employment outcomes. This suggestion even has the potential to benefit employers as well, as cancer survivors will be able to be more productive in a supportive work environment.

Study participants discussed how a lot of the same aspects of a supportive work environment, like ongoing check-ins, encouragement, and understanding, were also helpful when received from insurance companies. These strategies allowed participants to better negotiate time off work and to make appropriate arrangements for a gradual return to meet their needs. However, some participants discussed how their needs were not understood, leading to discrimination and pressure to return to work before they were ready. There is limited literature pertaining to the role of insurance in a Canadian context, where universal healthcare and insurance is independent of employment status [50]. However, a Canadian study found that 20% of their sample of breast cancer survivors identified insurance problems, and that issues with disclosure and discrimination impacted these difficulties, similar to the experiences of survivors in this study [51]. These findings substantiate the need for further research into the support insurance companies offer to Canadian cancer survivors when returning to work. Nonetheless, it is clear from this study that cancer survivors need this support to be targeted and respectful of their experiences and circumstances to facilitate return to work. This study recommends that insurance companies improve their interactions with cancer survivors by taking the time to clearly understand their individual needs and desires, and how to assist and support them going back to work.

Cancer survivors also need support from family and friends to improve their wellbeing and support them to feel ready to return to work. Again, this source of support includes ongoing, emotional supports and an understanding of cancer survivors’ circumstances. Further, participants stated that although this support is not work-specific, it is helpful for improving their health and encouraging them to go back to work. It is recommended that a better understanding of cancer survivors’ limitations is developed through the encouragement of open and supportive conversations.

Local community-based centers for cancer survivors were also a valued support for study participants because it met their need for targeted peer support. This social and emotional support has previously been found to be essential for healing and overcoming the negative psychological effects of the cancer journey [52]. Thus, these centres have the potential to support cancer survivors return to work in a unique way using cancer-targeted programs, such as exercise classes, and symptom management and return to work seminars. These community-based centres should be actively advertised to cancer survivors along their journey in the healthcare system to make sure they can benefit from this support in a timely manner. This advertising could be achieved through the comprehensive checklist of targeted resources for cancer survivors returning to work that was discussed earlier.

Exposure to peers with a shared lived experience of cancer can help to improve health outcomes and facilitate successful return to work. Peer support groups have been shown to provide a significant benefit to cancer survivors, particularly because of this mutual support [53]. This support can be provided through community-based centres, through family and friends who have experienced cancer, and also in other environments such as the workplace. Through this, survivors felt that their situations were truly understood and appreciated. Healthcare providers and community supports should advocate for the accessibility of peer support for cancer survivors in any way possible. Therefore, in order to improve the ability of cancer survivors to return to work, this kind of support from peers is suggested to be put into place, not just in the community, but also in the workplace and beyond.

Strengths and Limitations

An important strength of this study is that it directly uses the lived experiences of diverse, Canadian cancer survivors to explore the needs of survivors when returning to or staying in the workforce. This insight was significant for identifying key factors and recommendations that can help to meet the needs of cancer survivors going back to work. There are some limitations to this study that should be addressed. Firstly, the study sample had more female (n = 13) than male (n = 2) participants, so that issues were primarily generated from females. Despite this limitation, participants were diverse in many other ways such as age, return to work status, and type of cancer, with many perspectives throughout the study being shared by both genders. Further, this study only had four participants in each focus group due to scheduling issues, instead of 6–8 as suggested in the literature [54]. This limitation may have resulted in fewer perspectives and needs being thoroughly elucidated. Despite this potential limitation the discussion and associated results proved to be in-depth and meaningful, and the themes did not meaningfully differ from those discussed in the individual interviews. Notably, participation in focus groups did not seem to be impacted by language barriers, as 3 out of the 8 participants did not speak English as their first language. Another limitation to consider is that the study sample was generally well educated with at least a bachelor’s degree. This characteristic is important to keep in mind since it is possible that this factor could improve participants’ socio-economic status and have had a disproportionately positive impact on their ability to go back to work. Thus, since the sample was mostly well-educated females, it is possible they did not have as many financial worries related to return to work or other factors such as childcare. Also, as mentioned, there was an educational component that was included in the focus group as a resource and an incentive to recruit participants. This component was a short presentation organized and led by an occupational therapist on the study team and discussed information on legislation relevant to returning to work, how to prepare to return to work, and where to get more information and support. Although the educational component did not contribute to this study, it is possible that some participants who attended a focus group and received this information before their interview had their answers influenced by these resources and social desirability bias. Nonetheless, these differences across participants were not apparent, and the data collected likely represents the views of the participants regardless of the educational component.

Recommendations for Future Research

There are several possible future research directions to consider. First, it is important to explore sex and gender differences in returning to work so as to improve the development of individualized work strategies [16]. Although this study did not focus on this aspect of returning to work, insight from a future study focused on this topic and with a more equal distribution of female and male participants is warranted. Further, given the relatively high socio-economic status of study participants, and with most of them being female, learning more about how this factor can impact return to work, especially in a gender-based and Canadian context, is called for.

In this study, there was a wide range of ages from about 25 to 64. This observation raises the question of whether there is a relationship between age as a factor when returning to work in Canada. It is recommended that future studies attempt to narrow in on personal factors to better understand how these can impact the needs of cancer survivors returning to work. Another finding discussed above was that systemic issues interacting with insurance companies seemed to be unique to participants in this study compared to the literature. Thus, an exploration of how insurance companies deal with cancer survivors in a Canadian-specific context can shed a light on how to improve these barriers when returning to work. These systemic factors could be explored by studying the perspectives of cancer survivors and insurance personnel.

Finally, although this study begins to fill the gap on comprehending the experiences of diverse Canadian cancer survivors [16], it should be noted that this study and its participants are located within one Canadian city. In order to truly appreciate the perspectives of Canadian cancer survivors, it will be important to branch out on both a provincial and national level.

Conclusion

The purpose of this study was to investigate the needs of cancer survivors when returning to or staying in the workforce. Specifically, it focused on examining cancer survivors’ perspectives on supports, as well as personal and employment factors that influence the return to work process. To reiterate, the main recommendations that emerged from the identified themes were that cancer survivors may need: time and opportunity to come to terms with changing work capacity, work identity and centrality of work; help dealing with the dilemma of disclosure and determining workplace accommodations; professional assistance navigating the system to streamline access to resources and ensure effective communication across different sectors; and ongoing, targeted support from many different stakeholders to meet their unique needs with a focus on peer-support. These elaborated on how negative self-perceptions, systemic barriers, and a lack of accommodations and intercommunication can negatively impact cancer survivors when going back to work. In order to further improve the return to work experience for cancer survivors, it is recommended that more holistic, comprehensive services are put into place, and that existing ones are made more accessible, to ease their navigation throughout the system. This recommendation includes educating and training stakeholders to better support cancer survivors returning to work, and to make supports, resources, and accommodations more accessible to cancer survivors. Overall, this study informs Canadian cancer rehabilitation research by developing an understanding of the supports and strategies that should be implemented to help cancer survivors return to work successfully and improve their overall quality of life.