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Patient and caregiver return to work after a primary brain tumor.


ABSTRACT:

Background

Studies focusing on the return to work (RTW) experiences of patients with a brain tumor (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 multicenter, cross-sectional study utilized semi-structured interviews and reflexive thematic analysis. Interviews were conducted with adults diagnosed with primary BT, in employment/self-employed before diagnosis, currently in follow-up care, and also with 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 and 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 while managing increasing caring demands.

Conclusions

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

SUBMITTER: Nicklin E 

PROVIDER: S-EPMC10666801 | biostudies-literature | 2023 Dec

REPOSITORIES: biostudies-literature

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Publications

Patient and caregiver return to work after a primary brain tumor.

Nicklin Emma E   Phang Isaac I   Short Susan C SC   Hoogendoorn Petra P   Boele Florien W FW  

Neuro-oncology practice 20230719 6


<h4>Background</h4>Studies focusing on the return to work (RTW) experiences of patients with a brain tumor (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.<h4>Methods</h4>This multicenter, cross-sectional study utilized semi-structured interviews and reflexive thematic analysis. Interviews were conducted with adults diagnosed with pri  ...[more]

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