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Unveiling the Unspoken: Exploring Taboo Thoughts and Difficult Experiences Among Carers of People With Brain Cancer
Emma McDougall1,2, Sara Nordentoft3,4, Sine Kjærgaard5
1Faculty of Health Sciences, Curtin School of Nursing, Curtin University, Perth, Australia.
Objective:
The primary objective of this research was to explore the rarely discussed, often unspoken, taboo thoughts and difficult emotions experienced by carers who support individuals with brain tumour related personality and behaviour changes. A secondary aim of this study was to examine coping strategies used by these carers.
Methods:
A qualitative interview study was conducted with participants from Australia (n = 7) and Denmark (n = 6) (92% female, aged 42-68 years) who had been or were current carers for someone with a primary malignant brain tumour who was displaying personality changes. Semi-structured interviews were conducted. Using thematic analysis, key themes were identified.
Results:
Four key themes related to carers' unspoken thoughts were identified: (1) Staying safe: "His aggression was just out of this world"; (2) Conflicting and complex emotions: "I love him for who he was"; (3) Wishing for the end with grief and relief and (4) Experiences of patient death and end of life treatment decisions. Carers described five coping strategies: (1) Commitment to care; (2) Life alongside carer role; (3) Acceptance of circumstances; (4) Self-silencing; and (5) Information seeking and safety planning.
Conclusions:
The relentless nature of this disease and potential treatment side effects places an immense burden on carers that often is unspoken. The findings highlight the importance of healthcare professionals providing support for carers, in asking about their experience, and appropriate assessment and management of brain tumour related aggression. The results hold the potential to inform targeted interventions for the unique challenges faced by carers supporting someone with brain tumour related personality and behaviour changes.
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