Breast cancer survivorship and employment in Ireland: Legislative systems and the return to work of women with breast cancer

Abstract

BACKGROUND:

Breast cancer is the most common invasive cancer in females worldwide. While work is important for well-being, 84% of women in Ireland temporarily or permanently cease working up to six months post-breast cancer diagnosis. Under Irish law, there is a right to reasonable work accommodations, however paid sick leave has only recently been state-mandated. Legislation internationally varies across nations.

OBJECTIVE:

The aim of this study was to explore the experiences of women who have had breast cancer returning to, and/or remaining in work, in the context of employment legislation.

METHODS:

Fifteen women with breast cancer, fifteen healthcare professionals, and nine employers nationwide participated in a qualitative-descriptive design, using semi-structured interviews. Interviews were audio-recorded, transcribed, and data analysed using thematic analysis.

RESULTS:

Thirty-nine participants were recruited. A prominent theme from interviews was that most women with breast cancer and healthcare professional cohorts were not aware of employment rights in the context of cancer diagnoses. This is in contrast to employers. Experiences of sick leave and pay entitlements varied amongst women with breast cancer with financial pressure and expediated the return to work evident for some participants. Most women did not report any discrimination on returning to the workplace, although there were examples of indirect discrimination where unfair expectations were being placed on women by colleagues.

CONCLUSIONS:

Education and awareness on employment rights and entitlements during and after cancer treatment is warranted. This could be incorporated into work-focused interventions to support those living with and beyond cancer to transition back into the workplace.

Keywords

Law reasonable accommodations discrimination sick leave

1 Introduction

Breast cancer is common worldwide, accounting for over two million new cases in 2018 [1]. In Ireland, breast cancer accounts for 30% of invasive cancer diagnoses in females [2]. Most women diagnosed with breast cancer in Ireland are of working age, where 64.6% of women are aged ≤64 years [3]. Work is important in maintaining well-being, however, 84% of women with breast cancer in Ireland have not returned to work up to six months post-diagnosis [4]. Return to work (RTW) rates vary internationally and can be influenced by societal, healthcare, workplace, personal, and legislative systems [5 –7]. Legislation can influence the RTW process following cancer with common issues including discrimination [7], sick leave [8], and work accommodations [9].

Up until 2022, employers in Ireland had no obligation to offer payment during sick leave, but could do so at their discretion or if outlined under an employee’s contract [10]. Evidence demonstrates that financial burden strongly influences how soon someone living with and beyond cancer will RTW, whether they perceive themselves ready or not [5 –7]. Thus, experiences of those living with and beyond cancer can vary where sick leave entitlements differ. Employees with cancer who do not receive paid leave may be entitled to State entitlements. This is in line with a minority of EU Member States, Cyprus, Denmark, Greece and Portugal, where sick pay from the employer is not state-mandated but there may be entitlements to State benefits [11]. Employers in Ireland are also obliged to make reasonable accommodations which can be defined as a change or modification to the tasks and/or structure of a job or work setting, which enables the qualified employee (with a disability) to complete the job and enjoy equal employment opportunities [10]. Workplace accommodations, which include flexible hours, ergonomic adaptations, and change of role, are associated with positive health benefits [9] and are widely recognised as a legal entitlement across Europe.

Discrimination laws state that an employee cannot be subject to less favourable treatment based on nine grounds, including disability [12]. While the objective of discrimination law is to protect those with cancer, this is not always the case. A recent study [13] suggested that 20% of those living with and beyond cancer in the UK encounter some level of discrimination on RTW. Furthermore, self-reported workplace discrimination increased job loss probability by 15% in those with cancer [14].

While a number of studies [7 , 16] have referred to legislative systems as part of RTW facilitators and barriers for women with breast cancer, only one study [17] has explored the topic in Ireland, through quantitative methods. Qualitative research methods on the other hand can afford researchers an opportunity to illuminate and explore in-depth the ‘why’ and ‘how’ behind the numbers and offer first-hand perspectives of the topic in hand. Understanding in-depth how legislative systems could support or hinder RTW in Ireland could provide insights to policy- and decision- makers, as suggested by Sharp and Timmons [17]. Furthermore, it has been acknowledged that national differences should be considered when developing and implementing a successful work-focused programme for those with and beyond cancer [18]. This study is the first segment of a four-phase research study, to develop a work-focused intervention for women with breast cancer in Ireland, under the Medical Research Council framework for complex interventions [19].

The aim of this study was to explore the experiences of women who have had breast cancer returning to, and/or remaining in work, in the context of employment legislation.

2 Methodology

The reporting of this research is guided by the consolidated criteria for reporting qualitative research (COREQ) [20].

2.1 Research team and reflexivity

Data collection was led by the first author who is an occupational therapist by background and completing this research as part of her doctoral studies. She has previous experience in qualitative research and holds a Masters (Clinical Research). No relationship was established with participants prior to the study. The researcher has a specific interest in the topic as has previously worked in oncology services and vocational rehabilitation.

2.2 Study design

A qualitative-descriptive design [21], using face-to-face semi-structured interviews, explored knowledge and perceptions of legislation to support women with breast cancer to return and/or remain in work. It has often been a design of choice when a straight description of a phenomena is required to assist in the development of a health-related intervention [22]. Ethical approval was granted in March 2019 by the Faculty of Health Sciences Research Ethics Committee, Trinity College Dublin [REF: 190101].

2.3 Participant selection

Three cohorts of participants were recruited; women who have had breast cancer and since returned to work, healthcare professionals who have cared for women with breast cancer, and employers who have had experience in managing the RTW of employees with cancer. Inclusion criteria varied across cohorts. Women with breast cancer were eligible if they had (i) a past primary diagnosis of breast cancer, (ii) completed all active treatment (defined as surgery, chemotherapy and/or radiation therapy), (iii) returned to work following breast cancer diagnosis within the last 24 months (to minimise recall bias), (iv) were aged 18–66 years old (current employment age in Ireland), and were (iv) in employment at the time of diagnosis. Healthcare professionals were eligible if they had experience in caring for women who have had breast cancer. Employers were eligible if (i) they were involved in supporting return to work for employees (e.g. Human Resources, Occupational Health, Manager, etc.), and (ii) had experience in managing sick leave and/or work accommodations for employees due to any cancer type. While narrowing eligibility criteria was considered for only employers who had managed employees with a breast cancer diagnosis, it was envisaged that increased specificity in inclusion criteria might further limit recruitment. No exclusion criteria were applied to employers with respect to the size of the organisation or the sector in which they were based (e.g. public, private, semi-state).

It was aimed to recruit at least 13 participants from each cohort. Sample size in qualitative research is regularly debated among researchers and is often poorly justified in qualitative health research [23]. In a systematic review [24], the majority of qualitative descriptive design studies had sample sizes of 8–20 participants. Typically, one-to-one interviews were employed in these studies, whereas studies with larger sample sizes (e.g., 50) used survey instruments with analysis of open-ended questions. This is in line with consensus that qualitative research which incorporates in-depth interviews tends to have smaller sample sizes [25]. The concept of data saturation can also arise and be considered. Data saturation is defined as the process where no new insights are obtained from the data collection process [26]. It can be enhanced through data triangulation [27, 28] which was incorporated into this study. In light of this, it has been recommended [29] for health-related studies to interview a sample of ten cases followed by at least a further three cases to determine if any new themes emerge. As a result, it was aimed to recruit at least 13 each cohort, until data saturation was achieved. Data saturation was achieved for women with breast cancer and healthcare professional cohorts, but not employers. Purposive sampling was used in the selection of participants, and involves a conscious selection of participants with specific characteristics of interest [30]. It was used as the aim of this study was specific to the characteristics of the three cohorts defined in the inclusion criteria.

2.4 Study procedure

Cancer and healthcare organisations advertised the study through social media, e-mail databases, and through known contacts. Potential participants were invited to contact the researcher by email or telephone to express interest. The researcher then issued a letter to prospective participants, a participant information leaflet (PIL), and consent form. It was outlined in the PIL that this study was part of a larger phased study to inform a work-focused intervention. and that this was being completed as part of a doctoral degree. Potential participants were also made aware the rationale for the research topic in the PIL. The potential participant was contacted at least seven days following this. Interviews were arranged at a time and location convenient to the participant, usually at their workplace or in the university setting. Only the researcher and participant were present during interviews. Each participant was invited to pose any questions prior to participation and signing consent. All participants who expressed interest in the study took part.

2.5 Data collection

Once-off semi-structured interviews, guided by a predefined piloted interview schedule, were conducted. Interview guides varied marginally across cohorts with respect to wording. For example, women with breast cancer were asked ‘Is there anything that would have helped support you back into the workplace?’, whereas employers were asked, ‘What would support you as an employer to help this cohort back into the workplace?’. The schedule evolved somewhat over time to reflect any issues raised in the initial interviews, e.g., in-direct discrimination was also prompted following discussion by a healthcare professional. Patient and public involvement (PPI) representatives were consulted regarding the schedule questions and the readability of documentation. All interviews were audio-recorded using a Dictaphone and conducted by the researcher who took field-notes throughout. Recruitment of all three groups, and data analysis were completed in parallel with one another. Interviews averaged 53 minutes. Following data collection, the researcher independently completed transcription and used NVivo software to support data management.

2.6 Data analysis

Transcripts were uploaded onto NVivo. Data were analysed using thematic analysis [31], where themes were derived from the data. All three groups of participants were analysed separately and then combined. A second author checked the codes (which were initially developed by the first author), the findings and approved the final description.

Six steps are taken to complete the analysis:

Becoming familiar with the data by reading actively, searching for patterns and meanings throughout the transcripts.

Generating initial codes, highlighting interesting features of the data. Coding involved organising data into meaningful groups.

Grouping codes into themes. During this stage, codes were analysed for patterns and contrasts, to form overarching themes. Comparisons and contrasts were also made bet-ween groups.

Reviewing and refining themes. The res-earcher looked for themes that could merge together or be omitted if not supported by sufficient data. A hierarchy chart similar to a coding tree via NVivo depicted weighting of codes to identify sufficient data. This also helped to identify where themes emerged more strongly in some cohorts than others, as well as deviant cases.

Themes were then defined and named. Any sub-themes were finalised, and the researcher identified a narrative for each theme.

Finally, the researcher completed a final write-up. This included the fully worked-out themes and went beyond description, making an argument in relation to the posed research questions. Transcripts were not returned to participants for any further comment on findings.

3 Results

Thirty-nine participants engaged in this study over a six-month period in 2019; fifteen women with breast cancer (BCS), fifteen healthcare professionals (HCP), and nine employers (EMP).

Women with breast cancer: The mean age was 51.2 years. The majority had radiation therapy (n = 12), chemotherapy (n = 11), lumpectomy (n = 8), and hormone therapy (n = 8). Every participant took time off work post-diagnosis, averaging 11.3 months. The mean time taken off from work during recovery (i.e. from end of active treatment to RTW) was 13.9 weeks. Job roles were diverse.

Healthcare professionals: A diverse range of healthcare professionals participated. The majority worked in the public sector (n = 9) and acute setting (n = 10). Years of experience in an oncology role averaged 10.6 years.

Employers: The majority of employers worked in large organisations (n = 8), most frequently in Human Resources (n = 5) and in semi-state companies (n = 4).

Full demographic characteristics are available for each cohort (Tables 1 –3). The influence of legislative systems on the RTW of women with breast cancer in Ireland is reported and discussed under three themes within this topic (Fig. 1).

Table 1
Participant characteristics (Women with breast cancer)

Table 2

Participant characteristics (Healthcare professionals)

	Role	Years’ experience in an oncology role	Setting	Sector
P2	Clinical Nurse Specialist	16	Community	Registered charity
P3	Director of Cancer Services	3	Community	Registered charity
P12	Physiotherapist	7	Acute	Private
P13	Physiotherapist	3	Acute	Public
P14	Clinical Psychologist	12	Acute	Public
P16	Occupational Therapist	35	Acute	Public
P17	Physiotherapist	5	Acute	Public
P18	Clinical Nurse Specialist	18	Acute	Public
P19	Psychotherapist	5	Acute	Public
P20	Physiotherapist	4	Community	Registered charity
P21	Clinical Psychologist	1	Community	Registered charity
P22	Occupational Therapist	8	Acute	Public
P23	Clinical Psychologist	21	Acute	Public
P25	Counsellor	13	Community	Registered charity
P31	Medical Oncologist	8	Acute	Public

Table 3

Participant characteristics (Employers)

	Role	Years in role	Area	Sector	Size
P27	Occupational Health Nurse	18	Healthcare	Public	Large
P29	Human Resources	16	Transport & Logistics	Semi-state	Large
P30	Human Resources	4	Financial Services	Private	Large
P32	Human Resources	15	Transport & Logistics	Semi-state	Large
P34	Line Manager	30	Healthcare	Public	Large
P35	Human Resources	24	Marketing	Semi-state	Medium
P37	Human Resources	10	Healthcare	Semi-state	Large
P38	Occupational Health Nurse	17	Insurance	Private	Large
P39	Line Manager	18	Insurance	Private	Large

Fig. 1

The three themes.

3.1 Inconsistent knowledge of employment rights and legislation

Women with breast cancer and healthcare professional cohorts shared a reduced awareness of employment rights, particularly pertaining to cancer diagnoses;“I would probably be fairly vague” (P1, BCS), “I’m a bit shocked that I didn’t know about the legislation. So, how are patients supposed to know then?” (P13, HCP), “limited” (P17, HCP), and “I have no idea” (P24, BCS). One participant reflected she was not aware of the legal obligation on employers to offer accommodations; “Not by law, I thought they were just being nice.” (P10, BCS). The few participants who were aware of rights including reasonable accommodations, reflected how those with cancer might not recognise the applicability to their situation, instead associating accommodations solely with physical impairment.

“And in terms of reasonable accommodations. . . I’d tend to think about someone who had an injury or in a wheelchair. [I] don’t even know how I would consider it in terms of my situation.” (P28, BCS).

“I think some employees might think ‘reasonable accommodations’ and they think disability and when they think ‘disability’ they think of visual impairment or a physical wheelchair user rather than coming back from breast cancer.” (P29, EMP).

This is in contrast to the employer cohort who were aware of employment legislation, particularly around reasonable accommodations; “We definitely would provide accommodations.” (P39, EMP) and “We’re obliged to look at reasonable accommodations” (P32, EMP). One potential explanation for this contrast in awareness is the everyday nature in which employers from large organisations deal with the area.

“In HR. . . because we have so many employees, like every day we’d get a new request or questions [related to reasonable accommodations]. But we’re not surprised by it.” (P29, EMP).

Despite this awareness among employers, some participants reflected on poor employer-employee communication, a disconnect between cohorts. One woman with breast cancer discussed insufficient information from her employer around accommodations.

“I didn’t know [about the right to reasonable accommodations]. That slipped by me. God, I think that’s fantastic. I have never heard that or been told that by our HR department.” (P8, BCS).

From the employer perspective, one participant queried how they could better disseminate knowledge to employees.

“I’m just trying to think if we could communicate this better. . . Now in fairness, our HR department would know about it, but it’s possibly something that we could better communicate with our employees who are returning from sick leave.” (P29, EMP).

Additional barriers implementing accommodations were identified. Employers discussed reduced employee engagement, and employees not wanting to draw attention to themselves.

“Absolutely we have to make reasonable accommodations but that’s very much the grey area. There’s that whole piece of trying to engage with the person when they’re off to facilitate that. . . better return to work. The legislation may be there, but I don’t think it’s [enough]” (P27, EMP).

“What I’m seeing is that the returning cancer survivors don’t want a fuss made. They’re likely to want to keep it discreet.” (P30, EMP).

One healthcare professional noted some women choose not to proceed with recommendations.

“I always find [when I suggest accommodations], and people are like, ‘Yeah. I’m not going to do that’.” (P17, HCP).

Despite barriers, there were examples provided across all three cohorts of work accommodations implemented in practice in Ireland (Table 4).

Table 4
Work accommodations described by participants

Domain Sub-domain Examples:

Work practices Phased/Graded return: “I suppose in my experience with the women that I’ve worked with, who have got back to work, it’s because they’ve done it very incrementally” (P19, HCP)

“[My Occupational Physician] was the one who recommended the phased return” (P28, BCS)

Flexibility: “[My employer] did agree to me doing five mornings instead of three days” (P6, BCS)

“Flexibility is just huge for people [returning to work after cancer]” (P27, EMP)

“If you submit a request to your manager for a laptop, it’s likely that it will be approved, and we can facilitate working from home.” (P30, EMP)

Adaptation to work uniform: “[I would recommend them in] wearing their sleeve throughout work if possible.” (P17, HCP)

[My employee] would have had issues with standing a lot from the radium. . . so she had to get special shoes, which we accommodated.” (P37, EMP)

Assistance/Delegation: “I don’t have to go out and collect clock cards. One of the guys up in the office will say, ‘Will I go and get the clock cards for you?’ and I’ll say, ‘Yeah, please. It saves me having to go’” (P6, BCS)

“[My employer] brought in somebody for two days a week to work with me” (P15, BCS)

Work environment Ergonomic adaptations: “I said [to my employer], ‘I’m actually having a problem. It’s hurting me’. And we rearranged the lower shelves” (P6, BCS)

“[I would recommend] Ergonomics so keeping everything at hip level so not trying to reach or bend too much.” (P22, HCP)

Job description Change of role: “I was taken out of the junior class, which is a very physical class. . . and I was put into an older group where there was very little physical work” (P5, BCS)

“I don’t lift anything heavy anymore, you know. I used to do - carry paper up from the basement upstairs and I just don’t do it anymore”. (P8, BCS)

Task grading: “Breaking down tasks and having a change in the structure of how you might have done your tasks in” (P17, HCP)

Redeployment: “A lot of [alternative] roles have been filled by people who needed alternative employment.” (P29, EMP)

Domain	Sub-domain	Examples:
Work practices	Phased/Graded return:	“I suppose in my experience with the women that I’ve worked with, who have got back to work, it’s because they’ve done it very incrementally” (P19, HCP)
		“[My Occupational Physician] was the one who recommended the phased return” (P28, BCS)
	Flexibility:	“[My employer] did agree to me doing five mornings instead of three days” (P6, BCS)
		“Flexibility is just huge for people [returning to work after cancer]” (P27, EMP)
		“If you submit a request to your manager for a laptop, it’s likely that it will be approved, and we can facilitate working from home.” (P30, EMP)
	Adaptation to work uniform:	“[I would recommend them in] wearing their sleeve throughout work if possible.” (P17, HCP)
		[My employee] would have had issues with standing a lot from the radium. . . so she had to get special shoes, which we accommodated.” (P37, EMP)
	Assistance/Delegation:	“I don’t have to go out and collect clock cards. One of the guys up in the office will say, ‘Will I go and get the clock cards for you?’ and I’ll say, ‘Yeah, please. It saves me having to go’” (P6, BCS)
		“[My employer] brought in somebody for two days a week to work with me” (P15, BCS)
Work environment	Ergonomic adaptations:	“I said [to my employer], ‘I’m actually having a problem. It’s hurting me’. And we rearranged the lower shelves” (P6, BCS)
		“[I would recommend] Ergonomics so keeping everything at hip level so not trying to reach or bend too much.” (P22, HCP)
Job description	Change of role:	“I was taken out of the junior class, which is a very physical class. . . and I was put into an older group where there was very little physical work” (P5, BCS)
		“I don’t lift anything heavy anymore, you know. I used to do - carry paper up from the basement upstairs and I just don’t do it anymore”. (P8, BCS)
	Task grading:	“Breaking down tasks and having a change in the structure of how you might have done your tasks in” (P17, HCP)
	Redeployment:	“A lot of [alternative] roles have been filled by people who needed alternative employment.” (P29, EMP)

3.2 The impact of sick leave and pay entitlements on RTW

Experiences of sick leave entitlements varied among women with breast cancer from no entitlements to full pay. In contrast, employers tended to discuss entitlements in a positive light, as they all offered some level of support to their employees. While healthcare professionals didn’t reflect on pay entitlements from a personal perspective, they did recognise the potential impact that finances may play on the RTW process. Financial pressure could expediate the transition back to work or add worry.

“I wasn’t ready for full-time. [My employer] knew it. I knew it. Everyone knew. But for financial reasons, I had to come back full-time.” (P24, BCS).

“Two years in remission, used up your critical illness, then being told you had cancer [again]. That’s a big enough worry and then realising no money. Can you imagine like? The stress of that plus the stress of fighting [the cancer]” (P11, BCS)

Financial pressure was not the case for everyone, however. Every employer interviewed (the majority of which stemmed from large organisations), indicated that they offered some level of sick leave entitlement.

“All staff members are entitled to 12 weeks full pay, 12 weeks half pay, over a rolling four-year period for sick leave.” (P27, EMP).

“Our current sick leave scheme works on the basis of if I go out sick tomorrow. . . I will get 100% sick pay for six months.” (P32, EMP).

One woman with breast cancer reflected that she was lucky to have had full-pay.

“I was really lucky in the fact that I was paid fully for the whole time. So, I never had to think about that or anything like that.” (P15, BCS).

Some employers, and women with breast cancer identified using annual leave as a mechanism to gradually RTW without financial penalty.

“Some people like to return to work full-time but generally they’ll return on a kind of a phased return to work. So, they might take their accrued annual leave and public holidays which means they could work a two-day week for a number of months.” (P30, EMP).

“I’ve been back full-time on paper but I’m using my holidays because I had holidays from my maternity leave and my sick leave so I’m using that to work. I started only two days per week for the first month.” (P24, BCS).

Another participant cautiously kept annual leave as an insurance for the future should they require sick leave.

“Any sick day I take for the next twelve months is half pay. . . So, if I want to have reconstruction surgery, I need to wait, you know?...So, I am trying to ring-fence my annual leave so I don’t have to go on half pay. There are all of those things that you just never kind of think about.” (P28, BCS).

Only one woman with breast cancer reported to have had income insurance which alleviated financial stress.

“I still had an income drop for sure, but nothing like it would have been. Because I was off for 14 months, I went down to nothing from work. So yeah, like our savings would have been wiped out and it would have been really really difficult [if I hadn’t had income protection].” (P36, BCS).

Healthcare professionals echoed this sentiment, underlining the stress alleviated where patients could ‘relax’.

“Lucky for some patients they might have insurance and that really helps them and gives them a bit of a cushion and you’d be delighted for patients, that they can relax a bit and not have those money worries. I think one of the biggest things is money. It is money because it’s survival. It’s food on the table. It’s bills paid.” (P18, HCP).

3.3 Discrimination

While both women with breast cancer and healthcare professional cohorts initiated discussion around discrimination, employers needed to be prompted to reflect on whether it has been an issue in the past. A deviant case, only one woman with breast cancer described direct discrimination, recalling resistance by colleagues regarding promotion.

“I have had some negative feedback that people feel I’m not ready to be [promoted] yet despite the fact that I’ve been training forever and have all the skills. They don’t have any objective evidence as to what they mean. But I feel that I’m nearly being disadvantaged for having been sick because I don’t think they would have had these queries about me before I was sick.” (P36, BCS).

Once prompted, one employer described fear of discrimination experienced by an employee, potentially hindering career progression.

“[Our employee] felt she couldn’t apply for the role given her history of having been out for so long. So, while she felt that she was quite senior on the team and had the experience, she felt that she would be judged by people applying for this senior promotion, so I think that had an effect on her career goals.” (P30, EMP).

Indirect discrimination was discussed more prominently among all cohorts, where there was much reflection on the pressures placed on women with breast cancer shortly after the return to their role. While there was evidence of supportive work environments, sometimes this could be short-lived;

“When I went back, I was the centre of attention and that felt good. . . Now it’s all gone now” (P6, BCS).

“Jesus, they were so nice when I returned. The boss had lunch organised. . . and oh you know, ‘Anything you want?’ and, you know, ‘We’ll do what we can for you’. . . but look it, it didn’t last.” (P8, BCS).

This was often compounded by ‘invisible’ side-effects. One women with breast cancer reflected that although she was back and ‘visible’ at work, she still felt fragile.

“There is also a piece though on the minute you’re visible then you’re back. . . you can’t kind of stick up a sign that says, ‘Yes I am back but I’m still a little bit fragile’” (P28, BCS).

An employer participant echoed this view, suggesting initial support that fades as there are no physical signs of struggling.

“Early on there’s very much the extra support and the wrapping people in cotton wool and then I think when we see the person doing well, we just forget because they’re not talking about it, they’re not showing any signs and we can very easily just let it go.” (P27, EMP).

Some participants suggested that this reflects poor awareness among colleagues/employers of long-term cancer side-effects. Unrealistic expectations can lead to unrealistic workloads, as reported by one healthcare professional.

“It’s a huge barrier for an individual returning to work after breast cancer because there’s very little insight. You’ve got colleagues as well who might be, ‘Oh why does she have to go back part-time, she looks absolutely fine. I saw her out with her kids the other day and she can’t work a full day’, you know? It’s a lot around education I think.” (P22, HCP).

One woman with breast cancer recalled approaching her employer with an RTW plan that she developed with a healthcare professional, and echoed the unrealistic expectations being placed on her.

“When I went to Occupational Health [with an RTW plan], they were like, ‘Oh really? That’s not very [many hours]. Are you sure you won’t be bored? You probably want to do more than that’” (P36, BCS).

4 Discussion

A qualitative-descriptive approach was used in this study to identify factors that facilitate and challenge staying and/or remaining in work for women with breast cancer in Ireland. Considerable variations in knowledge and application of employment legislation across the three cohorts were identified. While there has been limited research conducted in the area of breast cancer and employment in Ireland [17], it has been quantitative in nature, focusing on employment outcomes post-cancer. This study extends this knowledge by using a qualitative-descriptive design to illuminate experiences of RTW and explore why and how legislative systems might impact on the RTW process.

Most women with breast cancer, and healthcare professionals were unaware of employment rights following cancer treatment, including the right to reasonable accommodations. This is in contrast to most employers interviewed who cited legal rights, unprompted. While factors (including legal constraints) impacting RTW for women with breast cancer has previously been reported before [17], this study illuminates a lack of awareness around this legislation, and the potential mismatch of awareness across stakeholders. It also offers an insight that women with breast cancer may not always apply the legislation to their own circumstances. Poor awareness of rights amongst the general population is not surprising. When asked to self-report rights in Ireland, only 5% of the general population surveyed cited ‘equality in the workplace’ and ‘equal pay’ [32]. Similarly, in England and Wales, substantial lack of understanding of employment rights was reported, even amongst the general population for whom particular laws had specific bearing [33]. A 2015 EU Report [34] found that 45% of respondents self-reported to know their rights if they were the victim of discrimination or harassment. This figure deviates among countries, where the EU average conceals wide national differences in awareness, where 78% of Finnish respondents self-reported knowledge, compared to 31% and 59% of Bulgarian and Irish counterparts, respectively. Perceived awareness of employment rights may not always be representative of actual knowledge however, prompting recommendation for further research to explore actual knowledge of awareness. Some steps have been taken in Ireland in recent years to raise public awareness of employment rights. In secondary education, all students are taught the nine grounds of discrimination under the Civic, Social and Political Education (CSPE) curriculum [35]. The Marie Keating Foundation, a cancer charity in Ireland, also released a booklet for employees and employers, ‘Back to work after cancer’, outlining employment rights [36].

Recommendations for future research include the development of employer education in legal issues protecting employees with health problems such as cancer. Educating employers around best practices for accommodations and discrimination awareness, in the workplace are also recommended [37]. Education should extend beyond this cohort of employers, however, and be targeted towards those with cancer in order to support informed work-life decisions. Furthermore, healthcare professionals could consider explicitly highlighting accommodations beyond physical modifications that enhance occupational performance such as a graded return, flexible hours, and working from home structures.

Women with breast cancer in this study experienced varying sick leave entitlements which influenced their RTW in different ways. Employers also reflected on sick leave benefits however were generally more optimistic as all employers included in this study provided some level of entitlement. This is perhaps unsurprising as employers in this study stemmed from large-medium organisations and were mostly from the public-sector or semi-state. The financial impact of cancer is not a novel issue. This research however extends knowledge by considering how legislation can impact on financial pressure and expediate a RTW that may be premature in terms of recovery. Since the time of the interviews, paid sick leave has become state mandated in Ireland, and there is some evidence to show that disability reforms in sick leave entitlements across some EU states is impacting positively on claimed benefits. For example, a Dutch policy introduced in 2002 (The Gatekeeper Improvement Act) ensures that sick employees cannot be fired during the first two years of sick leave and receive at least 70% of their salary during this period. Records show that 25–30% less benefits were claimed by the women with breast cancer under this scheme between 2002–2004 [38]. However, full RTW rates at one year for women with breast cancer had decreased from 52% in 2002 to 43% in 2008 [5]. In contrast, in some EU countries other reforms have resulted in reduced sick benefits. This particularly emerged following the 2008 financial crisis. For example, reforms in Hungary led to halving those benefiting from sick pay between the period of 2005–2013, with 17 million less sick days during that period [39]. This is important as adequate time is cited as imperative for physical and mental recovery after cancer (the length of which is individualised) [40, 41] and may be impacted by reforms such as this.

In this study, most women with breast cancer did not report experiencing direct discrimination in the workplace following their diagnosis, although there were examples of indirect discrimination. Similarly, healthcare professional and employer participants did not identify direct discrimination of women with breast cancer with whom they had contact. Direct discrimination is the legal term that applies when an individual is treated less favourably than another, because of at least one of nine grounds including disability (e.g. a colleague questioning promotion). Indirect discrimination is where an employer treats an employee the same as everyone else, but it has a negative impact on the employee. For example, findings of this study highlighted unfair expectations being placed on some returning employees by both colleagues and employers, particularly where there are ‘invisible’ side-effects post-treatment. To our knowledge, this is the first study to explore how ‘invisible’ side-effects post-breast cancer can influence indirect discrimination in the workplace. Unrealistic expectations being placed on those living with and beyond cancer has previously been reported in a systematic review [42], although this did not refer to expectations placed by colleagues. It is, unfortunately, not surprising that some level of discrimination was found. Findings from a survey revealed that 59% of participants in Ireland believed that those living with a disability would likely encounter discrimination in the workplace [32].

Exploring first-hand accounts, a recent UK study [13] suggested that 20% of those living with and beyond cancer encounter discrimination on RTW. The Social Model of Disability [43] outlines that disability is caused by the way in which society is organised, including the attitudes of others, rather than the condition itself. Educating colleagues and employers should be prioritised to increase awareness of discrimination and chronic health conditions. It has been suggested that those living with and beyond cancer could benefit from guidance around whether to disclose their cancer diagnosis and how to best respond to any discriminatory behaviours [44]. This is echoed in a scoping review where recommendations include educating employers in creating supportive work environments, and those living with and beyond cancer in developing self-advocacy skills [45]. This education could be incorporated into a work-focused intervention for those living with and beyond cancer. There is currently a paucity in evidence for these types of intervention, with only a minority of existing studies including a control or randomisation in their design [46, 47]. The authors of this research are in the development stage of such an intervention for women with breast cancer. While there remains a paucity in work-related interventions, there is some evidence to suggest that multidisciplinary interventions could be effective among all cancer cohorts [48].

4.1 Strengths and limitations

Data source triangulation can offer comprehensive understandings of a topic. In this study, participants with different experiences of women with breast cancer returning to work, provided multi-faceted viewpoints. Furthermore, there were various categories of employment and age amongst women with breast cancer. Healthcare professionals also offered viewpoints from a range of disciplines. Limitations of the study include that employers stemmed from medium-large organisations which may be more likely to have occupational health supports in place compared to smaller organisations. It is possible that employers who do not have occupational health structures, may be hesitant to participate, excluding a viewpoint of this cohort. Another limitation is that the majority of employers in this study self-assessed their organisations as progressive and equipped in supporting employees. Employers who may feel less competent in addressing cancer-related concerns in the workplace may be less likely to participate, and this could be a reason for not reaching desired recruitment rates for employers. Finally, women who had not returned to the workplace were not included in this research. While this was to focus on aspects within the workplace that may impact on the RTW journey, speaking with the cohort of women may have provided valuable insights as to why they did not return.

5 Conclusion

Several legislative factors appear to impact on the RTW of women with breast cancer, that change over time from diagnosis and following their RTW. Of note, there appears to be an inconsistent awareness of employment rights in Ireland, financial pressures stemming from sick leave and pay entitlements, and some participants reported experiences of discrimination. Taking these considerations into account, a work-focused intervention specific to women who have had breast cancer, could assist with this process of RTW.

Footnotes

Acknowledgments

The authors wish to thank every participant who engaged in this study, and every organisation who supported recruitment.

Conflict of interest

The authors declare no conflicts of interest.

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Breast cancer survivorship and employment in Ireland: Legislative systems and the return to work of women with breast cancer

Abstract

BACKGROUND:

OBJECTIVE:

METHODS:

RESULTS:

CONCLUSIONS:

Keywords

1 Introduction

2 Methodology

2.1 Research team and reflexivity

2.2 Study design

2.3 Participant selection

2.4 Study procedure

2.5 Data collection

2.6 Data analysis

3 Results

Table 1 Participant characteristics (Women with breast cancer)

3.3 Discrimination

4 Discussion

4.1 Strengths and limitations

5 Conclusion

Footnotes

Acknowledgments

Conflict of interest

References

Table 1
Participant characteristics (Women with breast cancer)