Individual Abstract within a Delegate Designed Symposium 2025 Joint Meeting of the COSA ASM and IPOS Congress

 Taboo thoughts and difficult emotions: Carers’ experience of brain tumour related personality and behaviour changes (125754)

Emma McDougall 1 , Georgia Halkett 1 , Sara Nordentoft 2 3 , Sine Kjærgaard 4 , Anna Nowak 5 , Haryana Dhillon 6 , Lauren Breen 7 8 , Karin Piil 2
  1. Curtin School of Nursing/Curtin Health Innovation Research Institute, Curtin University, Perth, WA, Australia
  2. Department of Clinical Medicine, University of Copenhagen, Copenhagen, Denmark
  3. Department of Neurosurgery, Copenhagen University Hospital, Copenhagen , Denmark
  4. Department of Oncology, Centre for Cancer and Organ Diseases, Copenhagen, Denmark
  5. Medical School, University of Western Australia, Perth, WA, Australia
  6. Psycho-Oncology Cooperative Research Group, The University of Sydney, Sydney, NSW, Australia
  7. Curtin School of Population Health,, Curtin University, Perth, WA, Australia
  8. Curtin enAble Institute, Curtin University, Perth, WA, Australia

Purpose

The purpose of this research was to explore the seldom discussed, often unspoken, taboo thoughts and difficult emotions experienced by carers who support someone experiencing brain tumour related personality and behaviour changes. A secondary aim was to identify carer coping strategies.

Methods

A qualitative interview study was conducted with thirteen consenting current or former carers (Australia n=7; Denmark n=6) (92 % female, aged 42-68 yrs) of an individual with a primary brain tumour who was or had been exhibiting personality or behavioural changes. The semi-structured interviews focused on exploring carers unspoken and taboo thoughts about their caregiving experience, and their related coping strategies. Information power guided the sample size which was estimated to include approximately 10-15 individuals. Reflexive thematic analysis was used to identify themes.

Results

Four themes related to carers’ unspoken experiences 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) Experiences of patient death and end of life treatment decisions; and 4) Wishing for the end with grief and relief.

Five themes were developed from carers descriptions of their 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.

Conclusion and clinical implication

Carers of individuals with brain tumour-related personality and behaviour changes often carry a hidden emotional load, marked by grief and in some cases anxiety and hypervigilance related to patient aggression. These findings underscore the need for healthcare professionals to assess and manage brain tumour related personality changes, especially aggressive behaviours, and to support carers. These results hold the potential to inform targeted interventions that acknowledge the unique realities of supporting someone with brain tumour related personality and behaviour changes.