Patient and caregiver return to work after a primary brain tumour

Background Studies focusing on the return to work (RTW) experiences of patients with a brain tumour (BT) are scarce. We aimed to explore, in-depth, the occupational expectations, experiences, and satisfaction of patients who RTW after a BT diagnosis and treatment, those not able to, and their family caregivers.

Methods This multicentre, cross-sectional study utilised semi-structured interviews and reflexive thematic analysis. Interviews were conducted with adults diagnosed with primary BT, in employment/self-employed before diagnosis, and currently in follow-up care; also their caregivers.

Results In total, 23 interviews (17 patients/6 caregivers) took place. Five themes were developed: 1) Early (adjustments and) expectations: “Thought I would be back at work the following Monday”; pre-treatment patients wanted to be better informed about potential recovery time and side-effects. 2) Drivers to RTW: “Getting my life back on track”; RTW was seen as a symbol of normality, also dictated by financial pressures. 3) Experiences returning to work: “It’s had its ups and downs”, patients who had successfully returned were supported by employers financially, emotionally, and practically. 4) Required support: “He had surgery and that was it”, suggested support included a back-to-work scheme, and comprehensive financial support. 5) Caring and paid work: The “juggling act”, carer’s work was significantly impacted; often reducing/increasing their working hours whilst managing increasing caring demands.

Conclusions Future research focused on RTW in neuro-oncology populations is needed. Interventions should be developed to improve employer/employee communication, and increasing knowledge about BT care and possibilities for RTW, to support patients and caregivers towards sustained employment.