Barriers to employment of Australian cancer survivors living with geographic or socio‐economic disadvantage: A qualitative study

Abstract Background Opportunities for cancer survivors’ employment can both reflect and perpetuate health inequities, as employment is an important social determinant of health. Socio‐economic and geographic disadvantage is associated with greater difficulty finding work, but little is known about work needs of Australian cancer survivors living with disadvantage. Objective This study examined survivor and health‐care professional (HCP) perspectives on barriers experienced by Australian cancer survivors experiencing disadvantage when attempting to remain at or return to work. Method Focus groups and individual interviews were held with cancer survivors (N = 15) and oncology and primary HCPs (N = 41), focusing on communities at risk of disadvantage. Participants were asked about employment barriers and facilitators in general and in the context of disadvantage. Themes were identified using framework analysis. Results Geographic and socio‐economic disadvantage resulted in specific individual‐ and system‐level barriers. These related to distance from treatment and support services and limited availability and suitability of work for survivors living with geographic disadvantage, and limited availability, security, and flexibility of work and previous unemployment for survivors living with socio‐economic disadvantage. Identified needs included system‐level changes such as public and workplace‐level education, legislative and policy changes, and better access to resources. Conclusions Cancer survivors living with disadvantage experience limited access to flexible employment opportunities and resources, further perpetuating their disadvantage. Promotion of health equity for cancer survivors living with disadvantage requires systemic changes to support attempts to remain at/return to work. Patient or public contribution This study included cancer survivors and HCPs as investigators, authors and participants.


| INTRODUC TI ON
Support regarding employment and remaining at or returning to work represents an important unmet need for cancer survivors, their health-care professionals 1 and employers. 2 Cancer survivors are approximately 1.4 times more likely to be unemployed than healthy controls 3 and are delayed in return to work or retire early. 4 Employment has substantial individual benefits for physical, psychological and social health, including sense of personal worth and identity; 5 self-esteem; 6 distraction; 2 better physical and psychosocial functioning; 7 and sense of normalcy and social connectedness. 8 In contrast, loss of employment can result in poorer quality of life and reduced psychosocial functioning, 9 and has significant negative financial implications. 10,11 As employment is recognized as an important social determinant of health 12,13 impacting on health outcomes for cancer survivors, 14 the ability to remain at or return to work is important for health promotion and equity. Difficulty remaining at or returning to work during or after cancer treatment is attributable to impaired health; functional limitation; work demands; policy and procedures; and economic factors. 15 Work outcomes are influenced by discrepancies between work demands and individual capabilities, 15 with return to work negatively impacted by physical/manual work demands, lower education and lower income. 16,17 Reviews suggest a coordinated approach to return to work involving health and vocational professionals, with more research on environmental and occupational factors influencing the return to work. 18 Survivors living in rural and socio-economically disadvantaged communities may face additional challenges related to employment, compounded by the work demands of available occupations and by socio-economic factors. A study in the United States found rural cancer survivors were less likely to return to work than metropolitan-or urban-dwelling survivors, with rural survivors 66% more likely to retire early compared to urban survivors of similar age, education and cancer stage. 19 A European study found cancer survivors from lower socio-economic groups were less likely to return to work and took longer to return or to regain employment than survivors from groups experiencing less socio-economic disadvantage, despite routine offering of occupational rehabilitation to cancer survivors. 20 Authors of these studies argue the employment needs of rural cancer survivors and those living with socio-economic disadvantage are distinct from the needs of other cancer survivors, due to the nature of occupations prevalent in these groups. 19,20 This is consistent with findings indicating that the employment gap for cancer survivors is larger for those employed in agriculture, forestry, fishery, transport, manufacturing and services, compared with those in sciences, humanities, administrative, managerial or clerical work. 21 Therefore, approaches aiming to assist cancer survivors living with disadvantage to remain at or return to work must consider the potential for these survivors' distinct needs to impact upon this process.
Little is known about challenges work participation for cancer survivors living with disadvantage in Australia. The Australian Bureau of Statistics defines relative socio-economic advantage and disadvantage in terms of access to material and social resources, and their ability to participate in society. Socio-Economic Indexes for Areas (SEIFA) indicates a trend for greater disadvantage in outer metropolitan, regional and remote areas. 22 Socio-economic disadvantage relates to higher cancer rates, worse cancer outcomes and additional employment challenges, 23 due to low population density and limited opportunities for employment or vocational rehabilitation.
A previous study exploring Australian cancer survivors' return to work recommended including the perspectives of primary care health professionals, due to the integral role they may play in facilitating return to work. 1  This study therefore aims to examine perspectives of cancer survivors and primary and tertiary health-care professionals (HCPs) on unique individual and system-level barriers and needs experienced by Australian cancer survivors living in disadvantaged circumstances when attempting to remain at or return to work.

| Participants and procedure
Ethics approval for this study was obtained from Southern Adelaide Clinical Human Research Ethics Committee. Two cancer consumers (defined as 'a person affected by cancer as a patient, survivor, cancer survivors, employment, return to work, social determinants of health, vulnerable populations carer or family member', 30 in this case both cancer survivors) were involved in study design, analysis and writing and co-facilitated focus groups but did not contribute their perspectives to the data.
Qualitative, inductive methodology (using semi-structured interviews and focus groups) was used to explore the experiences and perceptions of cancer survivors and HCPs, with particular focus on barriers and enablers to remaining at/returning to work. This approach (using both semi-structured interviews and focus groups) allowed for explorations and discussions of relevant experiences and perceptions of participants, in addition to creating an atmosphere conducive to an open and uninhibited flow of conversation. 31 In this way, the interview process and data analysis recognized that 'return to work' may (or may not) have been an issue for the cancer survivors and HCPs in the study (as opposed to predetermining its relevance). This enabled focus group and interview facilitators to draw out the world-views of the participants and limited the influence of researchers' preconceptions.
All participants completed informed consent prior to participating. Participants were sampled using a non-probabilistic, purposeful sampling method to achieve sampling via relevance. 32 The sample was structured primarily by socio-economic status and rural location, since these groups were assumed to incur the double-edged sword of having higher rates of cancer and lowest population-level employment rates. 23 Participants were therefore recruited from rural and outer metropolitan areas with a high prevalence of socio-economic disadvantage and evidence of poorer cancer outcomes, identified using the Atlas of Cancer in South Australia. 33 Cancer consumers and HCPs from medical, nursing and allied health disciplines were invited to participate in focus groups or telephone interviews; the option of either focus groups or interviews was offered to accommodate for participant circumstances (location, commitments, practice schedules), convenience and preferences. Invitation was facilitated by emails sent by the research assistant and investigators to consumer organizations, clinical groups and general practices in rural and outer metropolitan areas characterized by higher levels of disadvantage. Interviews and focus groups followed a topic guide (see Table 1 for example questions and Appendix 1 for full topic guide). All focus groups and interviews were facilitated by researchers experienced in conducting qualitative research and with clinical experience in managing distress in cancer survivors. Interviews were facilitated by these same researchers or by a social science researcher with training in qualitative research and in managing participant distress. All participants were advised that if they experienced distress due to participation, they could skip questions or immediately withdraw and would be offered support free of charge.

| Analysis
Interviews and focus groups were transcribed and then analysed using the software program NVivo 12 according to the 'framework method' of thematic analysis. 34 This method facilitates qualitative analysis that is directed a priori by a specific research objective but remains responsive to emergent themes within the data. Thus, a coding framework was developed based on key concepts from the research questions, but codes also were generated inductively to capture unexpected concepts. A preliminary coding framework was developed from a subset of transcripts and then developed iteratively through discussion with investigators and analysis of the complete set of transcripts to produce the final coding framework. This framework was applied across all survivors and HCPs, to enable comparisons and to facilitate a comprehensive picture of issues raised. Separate coding frameworks were not generated for survivors and HCPs, given the potential for similar issues to be recognized by these groups, albeit from differing perspectives.

| Participants
A total of 56 adults (15 consumers, 41 HCPs) participated in individual or paired interviews, or focus groups (Table 2)

| Barriers/enablers of remaining at/returning to work after cancer treatment
Themes in barriers and enablers of remaining at/returning to work during/after cancer treatment were identified by survivors and HCPs on three levels: (1) individual-level barriers/enablers experienced by cancer survivors in general (Figure 1), (2) specific subsets TA B L E 1 Example of focus group/interview questions on remaining at/returning to work after cancer in disadvantaged communities

| Individual-level barriers/enablers experienced by cancer survivors in general
Individual-level barriers/enablers identified by survivors and HCPs included cancer-related, 'mindset', sociodemographic and workplace-related factors. (Primary care focus group 1).

Sociodemographic barriers/enablers to remaining at/returning to
work included financial commitments, which were seen as increasing motivation to remain at/return to work.
If you're in the age group that you're still paying off your mortgage and you've got children as dependents, then you're more likely to need to work, I guess, regardless of ability necessarily.
(Treatment centre focus group).
For some, financial necessity of remaining at/returning to work was offset by availability of income protection insurance, a pension or benefit, or their partner's income.
Age was identified as barrier/enabler that affected likelihood of retirement (those closer to retirement age were considered less likely to remain at/return to work), fatigue levels, and employment and retraining opportunities.
People 50 to 65 I think are particularly at risk because cancer is prevalent, starts to become prevalent in this age group. They're already at risk in terms of maintenance of work, and they're in a black spot in terms of access to forms of financial support, so they feel up against the wall about going back to work, they just don't have the energy. They can't retrain.

Workplace-related barriers/enablers included characteristics of
work. Barriers included the requirement of manual/physical labour, high levels of concentration, or dealing with others' crisis situations.

TA B L E 2 Interview and focus group participants-gender and IRSAD quintile
Cancer survivors n (n female)

Health-care professionals N (n female) IRSD quintile
Primary care focus group 1 (Regional) Primary care focus group 2 (Remote) Primary care focus group 3 (Regional) 6 (5) Quintile 2 Primary care focus group 4 (Regional) was informed they had a weight limit which also had to be factored in.
Further workplace-related barriers/enablers included employer attitude, with a more understanding or flexible employer being an enabler and less understanding being a barrier. More supportive co-worker attitudes were identified as an enabler and co-worker discrimination/lack of understanding was a barrier.
When [I was] diagnosed they asked, "How long would you like off?" Not knowing, I said at least 6 months. They took on someone on a contract.
When the 6 months ended, they asked again, and I

| Additional issues experienced by disadvantaged survivor groups
Both survivors and HCPs identified additional issues experienced by disadvantaged survivor groups attempting to remain at/return to work.

Issues experienced by rural/remote survivors in remaining at/returning
to work included the need to travel long distances to treatment centres.
This was identified as impacting on availability and ability to work.
What would be unique to the farmers in rural and remote areas is distance to travel to appointments.
That's very hard to do so you try to condense them all in one day…But some people are so stuck that they've got to go back to work the next day. They get up early, 5 o'clock in the morning to get to an appointment and get home at 9 or 10 o'clock at night and go to work the next day.

(Survivor interview 4).
Travel to distant treatment centres was also noted to lead to a disjuncture with community-level support that could otherwise facilitate return to work, such as local cancer support groups, along with isolation from services that might assist with recovery/return to work, including transport (for travel to treatment, support services or workplaces).
A lot of our residents, they are sent through to Adelaide. The GP organises it. Off they go. They come In contrast, small businesses and the rural community were seen as supportive and more likely to try to 'look after' employees.
The good is that because we're a small community, people tend to care for each other, which is nice. So, you know, employers will be inclined to try and give them work back.
However, small communities also meant a potential lack of privacy and consequent increased opportunities for discrimination.
I applied for quite a few jobs, but I couldn't secure an interview. I put that down to perhaps they were concerned because I had the cancer tag… I don't know, no one's going to say that to your face or tell you.

Issues experienced by survivors living with socio-economic disadvan-
tage in remaining at/returning to work included higher unemployment and less secure employment, meaning less flexibility in hours/ability to take leave and consequently, less ability to remain at or return to work during or after treatment.
These patients are generally more inclined to want to get back to work quicker because they're feeling like their job's threatened. If they take any more time off, (Primary care focus group 4).
In general, however, HCPs working in socio-economically disadvantaged communities more often referred to a systemic lack of available support, rather than lack of individual motivation.

Some participants felt that employment outcomes could be addressed on a systemic level via HCPs.
So maybe we need to -and I'm sure it's been looked at before -but revisit how can doctors influence a more successful post cancer return to work.
(Survivor interview 2). There's basically no specific tools, it's just based on experience, knowing the patients really well before, during and after.
Some discussed a multidisciplinary approach to return to work assessment, including referral to other specialists such as occupational physicians. Despite this, GPs reported being responsible for completing much of the paperwork concerning return to work capacity.

| D ISCUSS I ON
This study aimed to identify barriers and facilitators of remaining at/ returning to work for cancer survivors who were living with disadvantaged circumstances, whether due to regional/rural location or socio-economic disadvantage. In doing so, it included perspectives of HCPs, with an emphasis on primary care professionals, and aimed to identify individual and systemic level issues in remaining at/returning to work for cancer survivors and recommendations for the targeting of these barriers.
Although our results were consistent with previous research and theory regarding the impact of personal or individual factors at the macro-, meso-and micro-levels on employment outcomes among cancer survivors, 15 this study identified additional factors predominantly at the meso-level, which are not included in previous research. 15 Survivors and HCPs identified factors at the microlevel such as demographic characteristics (eg age and proximity to retirement); meso-levels (flexibility of employment and psychosocial support at work); and macro-levels (economic situation and lack of policy or legal parameters to assess RTW capacity or implement flexible RTW strategies, community-based support services). Survivors from regional/rural communities were identified as experiencing significant additional barriers to employment predominately at the meso-level. In Australia, where almost a third of population live in rural and remote locations, 35 there are significant disparities in disease burden and health for those who live in outer regional, rural and remote areas compared with their metropolitan counterparts. 35 It has also been well documented that the further one lives from a treatment centre the poorer the cancer outcome, although the mechanism responsible for this outcome is unclear. 36 Our study offers some insight into understanding the additional strains placed on survivors seeking treatment for cancer. Participants identified a lack of local services, a need for travel to treatment and a disjuncture between treatment centres posing significant challenges for regional and remote cancer survivors when attempting to remain at/return to work, consistent with review findings indicating that travel to treatment causes practical and financial difficulty for rural survivors. 27 Some support was found for the hypothesis that this disparity may in part be due to higher proportions of regional/rural employment involving manual labour. 19 Further barriers included the lack of any available work and difficulty of employers in holding positions open for cancer survivors to return to. Positive aspects of regional and rural communities for cancer survivors looking to RTW included that rural communities and small employers were motivated to support cancer survivors in their community despite these difficulties, perhaps suggesting a greater sense of interpersonal connection and support. However, some felt that small communities led to lack of privacy and increased stigma. HCPs tended to relate lack of employment availability and flexibility more specifically to socio-economic disadvantage, whereas survivors who discussed these experiences tended not to explicitly refer to socio-economic disadvantage even when the context suggested it (lower education of co-workers, manual 'blue collar' work). This tendency may suggest survivor's focus on systemic issues (eg need for education), instead of self-identifying with disadvantage. Some primary care professionals reflected that socio-economically disadvantaged survivors may be accustomed to pre-existing unemployment and saw these survivors as unmotivated to seek employment. The presence of these perspectives suggested the need for more understanding of social determinants of health and well-being and systemic effects of socio-economic disadvantage indicated in previous studies 16,21 and the need for systemic changes to address them. HCPs working in socio-economically disadvantaged communities more often referred to a systemic lack of available support, rather than lack of individual motivation.
Participants' identification of the need for system-level changes (ie macro-level) to achieve more positive employment outcomes for cancer survivors is consistent with reviews proposing the influence of policies, procedures and economic factors on other factors in return to work, 15 and with reviews suggesting a role for policy change, including education on rights and obligations and better assessment of work capacities. 17  despite attempts, this study was not able to include the perspectives of either Indigenous cancer survivors or CALD cancer survivors. This difficulty indicates the need to design specific studies to examine employment issues for cancer survivors from these communities in more depth, as poorer health and cancer outcomes stand to impact on employment opportunities and experiences, which may then contribute to further disadvantage and isolation in these communities.
Additionally, we chose to minimize detailed demographic data collection due to the challenges of recruiting and conducting research with targeted participants, including time limitations on primary care professionals, vulnerability of disadvantaged survivors who may be less likely to participate given additional burden, and potential concerns over identification in small communities; this decision meant we were unable to report age or individual-level income. Finally, this study was intended as a qualitative exploration of survivor and HCP experiences of barriers and facilitators of remaining at/returning to work for cancer survivors from disadvantaged communities. Our methodology using one-off participation in a focus group or interview allowed exploration of relevant issues while minimizing participation burden for health-care professionals and survivors living with disadvantage. Future research may benefit from a prospective approach to following survivors' experiences in attempting to remain at or return to work.
In summary, this study provided a rich account of barriers and enablers of remaining at or returning to work faced by Australian cancer survivors living in regional/rural and socio-economically disadvantaged communities. Both HCPs and survivors recognized the need for these issues to be addressed at the system level, with education, legal representation and better provision of resources all identified as avenues for promoting greater health equity for these cancer survivors.

ACK N OWLED G EM ENTS
The authors acknowledge and thank all participants for providing insight to their experiences for this study, and Dr Toby Freeman of the Southgate Institute for Health Society and Equity, Flinders University, for his helpful feedback on drafts of this paper.

CO N FLI C T O F I NTE R E S T
All authors declare no conflict of interest.

DATA AVA I L A B I L I T Y S TAT E M E N T
The data that support the findings of this study are available on reasonable request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions. Try to 'look after their own'

Consumers HCPs
'I think being small -even though we say some of these wineries and that are bigger employers they're still smaller country orientated places, they obviously look after their own'. (Primary care focus group 3)