Return to work for survivors of head and neck cancer: an Australian perspective

ABSTRACT

Survivors of head and neck cancer (HNC) are less likely to return to work (RTW) post-treatment than other cancer survivors and to experience the benefits that RTW brings. Factors influencing RTW for Australian survivors of HNC are inadequately documented. This study aimed to explore the experiences of individuals with HNC in relation to their transition back to work following treatment and factors related to work readiness, motivations and aids and barriers to RTW for this population. A qualitative phenomenological approach was used to examine this process in ten survivors of HNC less than 18 months post-treatment. Reflexive thematic analysis allowed common influences on the RTW process to be determined. Five major themes were identified: motivation to RTW, the impact of treatment, perceptions of the RTW process, influence of the workplace, and support options. Overall, the RTW process for survivors of HNC is complex and influenced by the financial need to resume work and the long-term physical impacts of treatment. System-specific issues related to the Australian welfare system are also directly impacting decision-making.

KEYWORDS:

• Head and neck cancer
• survivorship
• return to work
• employment

Head and neck cancer (HNC) is an umbrella term for all cancers of the lip, tongue, mouth, salivary glands, pharynx, nasal cavity, sinuses and larynx [1]. The unique challenges faced by survivors of HNC mean population-specific research is required to understand the factors related to the condition that may contribute to lower return to work (RTW) rates compared to other survivorship groups [2]. Understanding the reality of the RTW experience through identifying the factors aiding and complicating this is imperative to ensuring support is optimized for survivors of HNC.

The reported RTW rate for survivors of HNC varies between studies, from 32% [3] to 85% [2,4]. Australian studies tend to report a higher RTW rate for survivors of HNC [4] though the Australian RTW process, including the influence of the Australian healthcare and welfare system and their subsequent effect on RTW rates for survivors of HNC is not adequately documented. Reliance on generalizations from RTW research in other cancer survivor populations fails to account for the influence of HNC-specific factors including heightened disability rates [5].

Cancer survivors who RTW are reported to have higher health-related quality of life (HRQOL) and better health outcomes than those who do not [6,7]. Work as a means of contributing to wider society while reducing a survivor’s need to rely on financial support structures also improves a survivor’s confidence and sense of normality [8], and social engagement [9]. Post-treatment RTW is, however, often motivated by financial necessity. Despite government-funded universal healthcare, the pharmaceutical benefits scheme, and the extra coverage from private-health insurance, patient treatment costs are increasing [10]. Australian survivors of HNC are estimated to pay $42,305 for treatment and treatment-related expenses in the first-year post-diagnosis, more than $8000 higher than the mean cost for the first year of treatment across all types of cancer [11]. Medical expenses for survivors of HNC also persist long-term at higher levels than survivors of other cancer types, often long past treatment has ended [12]. These high expense rates have been linked to early or detrimental RTW transitions [13] as the need to RTW for financial reasons results in the broader population of cancer survivors resuming work earlier than they feel ready to [14,15].

While there are circumstances that can support and facilitate the RTW process for survivors of HNC [16–18], there are a greater number of potential barriers. Fear of being stared at or talked about underlie uncertainties about stigmatization by co-workers [8]. Self-consciousness about changes to physical appearance, perceptions of reduced work ability by the individual or co-workers, and reduction in self-confidence all serve to undermine the psychological benefits of a RTW [18]. Survivors of HNC with oral dysfunction and dietary changes may have the added burden of ongoing nutritional deficit, and issues with weight maintenance impeding the ability to regain physical fitness [19]. Other common physical issues for survivors of HNC include xerostomia (dry mouth), pain, trismus (muscle spasm of the jaw), dysphagia (difficulty swallowing), and sticky saliva [20]. These reduce the ability of many survivors to undertake common communication-related work tasks such as making phone calls [2]. Altered communicative ability is a commonly reported reason for a failure to RTW that is unique to this population [21].

Providing clinicians with in-depth and up-to-date information on influencing factors will allow improved management of patient RTW expectations and further evidence-informed guidance to inform management strategies. Additional research to support gaps in current psychosocial care as well as to assist with influencing of more appropriate welfare options is critical to this population. Further research is also needed to ensure HNC RTW knowledge is appropriately reflective of the current experience, with the HNC population increasingly shifting towards human papillomavirus (HPV)-related HNC patients who tend to be younger, more treatment-responsive and more interested in long-term return to the workforce than those represented in older literature [22]. This study aimed to explore the experiences of individuals with HNC in relation to the transition back to work following treatment, as well as to exploring factors influencing work readiness within the Australian context.

Methods

A phenomenological approach was adopted as this approach emphasizes the individual perspective and the reality through which the individual experiences an event [23]. This project was approved by the Peter MacCallum Cancer Centre Human Research Ethics Committee (Approval number: HREC/63193/PMCC, Peter Mac No: 20/48L) and Monash University Human Research Committee (Project number: 24981). This research was conducted by the lead author for the purpose of her Honours year research project. The supervision team (authors DS, GH, MOC), all experienced qualitative researchers, provided the necessary training, debriefing, and mentoring as required during the qualitative research process. LM provided clinical expertise as an experienced HNC clinician.

Participants

Participants were recruited from the outpatient setting at the department of radiation oncology, Peter MacCallum Cancer Centre (Bentleigh East, Victoria) during their scheduled follow-up appointments. Participants were eligible if they had completed (chemo)radiotherapy for any HNC within 18 months of the interview period. Participants were required to have either successfully RTW or have made a genuine attempt to do so since treatment, with a genuine attempt considered to be one that was planned in conjunction with the employer but not completed for disease or treatment-related reasons. Purposive sampling was used to identify individuals meeting the inclusion criteria for interviewing. HNC radiation oncologists facilitated recruitment.

Data collection

Semi-structured interviews were conducted with ten participants between June and October 2020; remote telephone interviewing was used due to the COVID-19 pandemic. All interviews were conducted by EM.

An interview guide (Table 1) was developed and used in conjunction with prompts to facilitate in-depth discussions of RTW-related topics.

Table 1. Interview guide.

- Why did you return to work? - What was the most important factor in deciding when to return to work? - Do you think you returned to work at the right time for you? - What do you think would have helped to make you feel more ready? - Was there any factor influencing your return to work that was out of your control? - What was the influence of your health on the decision-making process? - What resources were available to you to help with this transition? - Was your employer involved in your decision to return to work? - Were there any resources offered to you that you felt were unhelpful? - What was your friends/family’s involvement in the decision making? - Was there any influence from any individuals in your workplace? - Once you had returned to work, were there any issues that were not present before your diagnosis? - What was the response of your co-workers to your return? How did this make you feel? - If you went through this transition again, what would you like to have done differently?

Analysis

Reflexive thematic analysis (TA) was used to identify thematic patterns across the dataset [24]. TA is especially useful in the analysis of individual experiences required in phenomenological research and has the benefit of flexibility through its ability to be used in the absence of any underlying theories [25]. Step one, transcription was carried out by the first author allowing for a high level of familiarization with the data as well as to allow identification of any questions which needed further exploration in future interviews. The second step of inductive TA involved reading and familiarization of all transcribed interview data with initial impressions of likely themes noted. As the student researcher both conducted and transcribed all interviews, data familiarization was significant pre-coding. At step three, coding occurred aided by NVivo qualitative research software (Version 12.6.0, QSR International). Re-examining transcripts for further themes in an iterative process allowed the theme development to evolve as familiarization with the data increased, aligning with step four of Braun and Clarke’s inductive TA method. This process was repeated until all interviews were coded. At step five, organization of codes into themes encompassing all relevant data occurred with themes semantically developed based on participant statements. Finally, themes were defined and named. In the context of TA, themes refer to patterned responses, in this case the mutual experiences of participants during their RTW process and factors influencing that process.

Rigor

Reporting of this study was informed by the consolidated criterion for reporting qualitative research checklist (COREQ) [26]. Regular discussion about the data and emerging themes by the research team was used to ensure interpretation of data was robust. Following data coding by EM, discussion of emerging themes with DS and LM and overall review by the wider authorship team was utilized to reach consensus. All key decisions were documented via an audit trail and a reflexive diary was used.

Results

Population

The sample comprised ten survivors of HNC, who were 9 to 18 months post treatment (M = 13 months, SD 3.3 months) with seven of the ten participants having returned to work pre-interview. The mean age was 56 years old (SD 6.9 years; range 42–65 years old) with the average interview taking 22 min (range 10 min to 51 min). Table 2 summarizes the population demographics. Participants (P) exemplars are presented with their age.

Table 2. Population demographics.

Variable	n (%)
Age
40–49	2 (20%)
50–59	4 (40%)
60–69	4 (40%)
Gender
Male	9 (90%)
Female	1 (10%)
Time since diagnosis
≤9 months	2 (20%)
10–12 months	2 (20%)
13–15 months	3 (30%)
16–18 months	3 (30%)
RTW status
RTW	7 (70%)
No RTW	3 (30%)
Employment level pre-treatment
Full-time	9 (90%)
Part-time	1 (10%)
Employment post-treatment
Full-time	5 (5%)
Part-time	2 (20%)
Not yet at work	3 (30%)
HPV status of cancer
HPV positive/associated	9 (90%)
HPV negative	1 (10%)

Thematic analysis of interview transcripts led to the identification of five themes which are now outlined and shown in Figure 1.

Figure 1. Overview of themes and subthemes.

Motivation to RTW

The financial need to RTW: The RTW process overall was heavily dictated by the fact participants “needed to go back to work for the money” (P8, 62) or face “months at home with no pay” (P7, 65). The inadequacies of government-based benefits were frequently described and were a source of frustration. For those who did access support through Centrelink, the Australian government’s means tested financial support system, the received amount was reported as difficult to live on with “$550 a fortnight not going very far” (P2, 47). Participants were hesitant to explore Centrelink options due to difficulty understanding eligibility for supports, with one participant stating they couldn’t determine “if I was entitled to anything or not” (P7, 65). Perceptions of Centrelink also related to the hassle of the bureaucratic process with another reason articulated for not seeking income support through the government being that it would “take months” to get any outcome (P7, 65). Two participants who attempted to access Centrelink had claims denied, one explained that the short-term coverage of sick leave was considered adequate support, though this ran out shortly after the claim was denied. The other participant experienced an administrative error from Centrelink leading to their claim being “declined, but that took about six months” (P10, 42) when the claim was valid.

Resumption of pre-diagnosis life: A desire to move on and “get back to normal” life (P1, 61) was linked to a successful RTW. Participants wanted to “get back to work and … get moving forward again” (P3, 53) and to reassure their identity stating they “wouldn’t be able to not work” (P8, 62). Even where resumption of normal life was a motivator for RTW, it was overshadowed by financial considerations.

The impact of treatment

Weight loss, muscle wasting, neck cramps, difficulty with saliva and swallowing, and soreness of the mouth were all repeatedly highlighted as issues pre-RTW and in the workplace. These issues were commonly viewed as “just a side effect” with participants “wanting to get back to work regardless” (P5, 56). Treatment side effects heavily influenced the readiness and timing of RTW. Issues with general post-treatment fatigue were reported to exacerbate the side-effects of HNC treatment.

For the three participants who had not yet re-entered the workforce, the physical issues associated with treatment had left them “in no position to get back to work” (P9, 55). Even when RTW was financially necessary, treatment side-effects were prohibitive for these individuals, though RTW was still viewed as inevitable and the overall goal.

Perceptions of the RTW process

Concerns for RTW: Concerns regarding the impact of post-treatment fatigue were repeatedly described both by participants who had successfully resumed work, and by those who had yet to do so. Participants questioned “whether [they were] going to be able to make it through the day” (P2, 47), something that was of greater concern amongst participants whose jobs required physical labor. Other concerns related to ongoing issues with saliva and drooling as well as the potential need to attend to a gastrostomy tube in a shared workplace were managed effectively by patients requesting special permission to keep water bottles on their person and pre-determination of a private area for attending to the gastrostomy tube respectively.

Readiness to RTW: What was considered “ready” to RTW varied between participants. Resuming work with a gastrostomy tube still inserted was acceptable where jobs were less physically demanding. For others the nature of their work required more fitness to reach a point of “readiness”. Retrospective discussion of readiness led one participant to later state that “looking back on it I might have done it a little bit differently and I might have staggered the return” (P8, 62).

Influence of the workplace

Employer interactions: Contact from workplaces including managers and human resources staff was highly valued. Job security and an overall plan for the wider RTW process ahead of time reduced uncertainty and led participants to “feel so secure” (P3, 53). The availability of RTW programs comforted participants even if they “[felt] capable of returning to [their] full duties” without assistance (P3, 53).

Co-worker interaction: Co-worker interactions were overwhelmingly characterized by participants as positive, with one participant commenting “if it wasn’t for these people and this workplace it would have been a completely different story” (P2, 47). Comments about participants’ physical changes were reported to be light-hearted or supportive, no stigma or discrimination was apparent. Overt concern and emotional responses by co-workers to initial diagnosis was reported by one participant as challenging, particularly the “tears all the time … though they meant well” (P9, 55). Multiple participants attributed their ease of RTW and the positive aspects of their experience directly to workplace factors. One participant reflected that “working somewhere else I don’t know how it could have turned out” and that the workplace and the people within it “made it that much easier” (P2, 47).

Support

Medical support: The informational support for the RTW process provided by treating oncologists and assisting staff was consistently reported to be of high quality. Reduction in uncertainty and validation of decision making regarding RTW appeared to be central to how useful a resource was deemed. Overall, the resources offered within the medical system were rated by one participant as “everything I needed … and more” (P10, 42).

While discussions regarding a plan to RTW were usually initiated by the participants, expectations set by treating oncologists about the participants’ likely physical limitations at work were often factored into the timing of RTW, commonly that participants were “expecting too much and need to take it easy” (P9, 55). Delays based on medical advice were retrospectively identified as being “spot on” (P9, 55) even if the participant didn’t agree at the time or were unable to take the advice based on competing financial pressures. Nutritionists, speech therapists, oncology nurses and written information in the form of pamphlets were considered helpful resources.

Family support: Most participants reported discussing RTW with family members though this was most often in an advisory capacity with family being: “a support to me, but … it was basically just my decision” (P8, 62).

Participants also described positive emotions that arose from their experiences. The unwavering support and “unconditional love” (P9, 55) provided both by family and the treatment staff were emotional topics in many cases, though emotions were positive.

Discussion

This study explored the experience of Australian survivors of HNC returning to work post-treatment and explored factors contributing to motivation to RTW, perceptions of work readiness, and aids and barriers to RTW. Overall, this study identified that the RTW process for survivors of HNC is complex and influenced by the financial need to resume work and the long-term physical impacts of treatment.

Discussion related to motivation to RTW were dominated by financial considerations echoing what has been observed in other cancer survivor populations [15]. Although presented as secondary motivators, discussion also mentioned using RTW as a pathway to move on from the HNC experience and resume normal life. These motivations for RTW are also observed in the wider cancer survivor population [8,18] though for many participants in this study, personal wishes, and motivations to RTW were significantly over-shadowed by financial considerations. Employer-based income support including sick leave and accrued annual leave were described as inadequate to cover the period between diagnosis and RTW, with attempts to bridge the gap through Centrelink often not successful, as similarly observed in studies of other Australian cancer survivors [4]. There was a common belief amongst participants that there would be a lengthy waiting period between applying for benefits and obtaining financial aid. For those who accessed payments, the offered $550 AUD per fortnight was perceived as insufficient to overcome the need to RTW early for income. Despite conversations with health professionals (generally oncologists) warning participants they were considering RTW earlier than recommended, inability to access further financial supports outweighed medical opinions and for many created a situation where RTW was the only option.

What constituted a readiness to RTW varied between participants. Oncologists were consulted on opinions regarding RTW though the ultimate determination of readiness was patient driven with input from doctors related more to management of specific treatment side-effects. Participants appeared to be satisfied with this and did not express a desire for oncologists or wider treating teams to be involved in the RTW decision-making process in a more formal way.

Timing of RTW was heavily influenced by physical readiness even where the major motivation to RTW was financial. Readiness was generally the earliest possible RTW that could be physically sustained to allow for maximum financial gain. The post-treatment recovery phase for those seeking a return to jobs requiring manual labor appears to be particularly important and prolonged, a novel finding that has not previously been reported elsewhere. This may be a particularly relevant consideration for impacted patients given the risk of developing HNC may be higher in those with lower socioeconomic status and education [27] and who therefore may be more reliant on manual labor for income.

The ability to plan based on medical advice reduced uncertainty and stress regarding RTW for participants in this study, the lack of which has been reported to act as a barrier to RTW in other populations who have survived HNC [28].

Assurances of job security from employers had a positive psychological impact following diagnosis, which also facilitated the initiation of RTW, similar to other cancer survivor populations [8,16]. Offers of graduated RTW also helped participants RTW sooner and in a physically manageable way, allowing natural fitness build-up.

Family members, co-workers and the wider clinical team were also enablers of the RTW process.

The majority of discussions regarding barriers to RTW focused on the impact of treatment side-effects on the physical ability to work. While not exclusive to the survivors of HNC, ongoing fatigue is certainly compounded in this patient group due to the forced changes to eating behaviors and resultant delay regaining physical fitness. This was especially concerning for those returning to manual labor jobs, including all participants in this study who had not yet completed RTW.

Clinical implications

Patients with HNC may benefit from clearer communication regarding entitlements or discussions of financial support earlier in the treatment process, i.e. before the urgency to obtain money leads patients to consider early RTW. While not unique to survivors of HNC, the risk that financial considerations may unduly influence the timing of RTW may be higher in survivors of HNC due to the increased costs associated with treatment [11] and the socioeconomic characteristics of the population such as a higher reliance on manual labor for income [27] compared to other survivor groups. In this study, some participants had little difficulty returning to work post-treatment while others were unable to do so, suggesting the need to have risk-factor specific management strategies for the RTW process. Onward referral to specialists for physical rehabilitation or social support may be particularly useful to survivors of HNC given the physical and financial issues in the RTW process and the increased physical challenges that survivors of HNC may experience due to side effects of treatment.

Limitations

Concerns over facial disfigurement reported in the wider literature [29] were not reported by this population, potentially due to the use of phone interviews rather than face-to-face interviews to align with COVID-19 pandemic restrictions. This study is limited by its inability to determine whether facial disfigurement was not a concern for the sample, or whether it was simply not disclosed due to the means of data collection used. Similarly, due to data collection being verbal, individuals who are unable to communicate verbally due to their HNC treatment were not able to participate and their experiences as they attempt to RTW are therefore unknown at this time. This study also sought to recruit individuals who had made an attempt to RTW prior to interviewing and fails to account for the experiences of those who may be so impacted by treatment that RTW is not a feasible option – this study is therefore also limited as it only accounts for the experiences of a subset of the population of survivors or head and neck cancer and does not adequately capture experiences of all survivors. Future studies would benefit from further examining survivors of HNC who have successfully RTW as well as those who have chosen not to seek RTW, and those who may be struggling to RTW due to concerns of facial disfigurement and altered verbal communicative ability to ensure sufficient diversity of experience is documented.

Conclusion

This study has demonstrated that survivors of HNC experience many of the RTW barriers experienced by the wider cancer survivor population, with exacerbation of certain elements. While treatment-related issues were the most salient barrier to RTW, the informational support from treating doctors and the support received from employers, co-workers and family members appear to ease the burdens of the RTW process. There are also Australian-specific influences on the RTW process particularly related to inadequacies in welfare, which impact the decision-making process for survivors of HNC. At times this impact was observed to outweigh medical advice. Future interventions related to financial management may help patients with HNC to avoid an early RTW and become more physically stable before re-entering the workplace, allowing readiness to be determined by the individual and not by their financial circumstance.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

No funding was received for conducting this study.