Work experiences of Australian cancer survivors with lymphoedema: A qualitative study

Senia Kalfa1, Louise Koelmeyer2, Lucy Taksa3, Caleb Winch2, Hector Viveros1, Paul J. Gollan4, Helen Mackie2, John Boyages2. Health Soc Care Community. 2018;1–8

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Work experiences of Australian cancer survivors with lymphoedema: A qualitative study

Senia Kalfa1, Louise Koelmeyer2, Lucy Taksa3, Caleb Winch2, Hector Viveros1, Paul J. Gollan4, Helen Mackie2, John Boyages2. Health Soc Care Community. 2018;1–8

Our qualitative study addresses a significant gap in the scholarship on return‐towork after cancer by examining the impact of secondary lymphoedema on individuals in paid employment. We undertook an Interpretive Phenomenological Analysis of interviews with 14 cancer survivors (13 women) with secondary lymphoedema in Sydney, Australia. Our interviewees were engaged in paid employment during and after their lymphoedema diagnosis. In addition to difficulties with tasks involving manual or repetitive labour, interviewees highlighted the importance of work for maintaining their identity. They also outlined the critical role that significant others at work, such as supervisors and colleagues, play in maintaining that identity. At the same time, their need for privacy and control over to whom they disclosed their lymphoedema diagnosis emerged strongly from our interviews. Finally, we present the coping mechanisms that our interviewees utilised to manage their lymphoedema in the workplace, including covering the affected limb with long sleeves, changing the tasks they completed, or even changing employers. In addition to our contribution to the scholarship, we highlight implications for employers, future research, and policy makers.

Main findings

  • What is known about the topic?
    • Returning to work after cancer is beneficial as it increases feelings of normalcy and decreases social isolation, loss of self‐esteem, and financial hardship.
    • Lymphoedema lowers the probability that cancer survivors will return to work.
    • The number of cancer survivors is increasing and so will the number of survivors with lymphoedema.
  • What this paper adds
    • Work is salient for interviewees’ identities as evidenced by their reluctance to take leave even when feeling unwell.
    • Individuals satisfy their need for privacy by covering their affected limb and by controlling who they disclose their condition to.
    • Coping mechanisms include changing workstations, changing tasks, or even changing employers. Supportive colleagues and supervisors are critical to these ends.
  • Maintaining the identity of a stoic and resilient employee was more salient to our interviewees than their chronic lymphoedema.
  • Covering their garment with long sleeves or trousers was a mechanism most of our interviewees used.
  • Returning to work after a lymphoedema diagnosis also meant that interviewees had to choose whether and how much to disclose of their condition.
  • Disclosure was more complicated for individuals working in a client‐facing role who often had to explain lymphoedema to strangers.
  • Coping strategies included. Protecting the limb from overuse or trauma by avoiding repetitive movements and heavy lifting. Others changed how they performed tasks within their role. Also came across situations where the individual had to change their employment to cope with their new reality.
  • Future research should consider following lymphoedema sufferers at work over time, starting from diagnosis, to examine whether the impact changes over time as individuals learn to manage and live with their condition.
  • Policy makers should pay attention to the shortcomings of current sick leave design. Sick leave, at least in Australia, is designed under an acute illness framework, which assumes the individual will eventually get better.
  • Study limitation includes they relied on a limited number of interviews, and their design is cross‐sectional when a longitudinal one would possibly have yielded more insightful results.