ArticlePsycho-oncology2025
Unveiling the Unspoken: Exploring Taboo Thoughts and Difficult Experiences Among Carers of People With Brain Cancer.
Article in Psycho-oncology, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.
What it found
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Who cites it
4 citing papers in PubMed.
- Coordination of care in the context of primary brain tumors: Australian healthcare professionals' exploration of the unspoken impact and clinical implications.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2026Article
- Associations of Critical Relationships With Distress and Burden in Caregivers of Patients With Brain Tumor.Psycho-oncology · 2025Article
- Defining the symptoms of personality and behaviour changes in brain tumour patients and their impact on caregivers.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2025Article
- Unveiling the Unspoken: Exploring Taboo Thoughts and Difficult Experiences Among Carers of People With Brain Cancer.Psycho-oncology · 2025Article
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Authors and funding
8 authors.
Funding
Abstract
objectiveThe 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.
methodsA 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.
resultsFour 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.
conclusionsThe 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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