Median survival for High Grade Gliomas (HGG), the most common type of primary brain tumours in adults, ranges from less than 1 year to 3 years. The diagnosis is often made after a short symptomatic period so patients and their carers need to make immediate treatment decisions and adjust their lifestyles to deal with functional, emotional or cognitive decline.
Aim: The aim of this sub-study was to understand the carers’ experiences of looking after a person with brain cancer early in the disease trajectory.
Methods: A randomised controlled trial (Care-IS) is underway to assess an intervention that provides carers with additional education and support and aims to reduce distress and improve preparedness. This nurse-led education program consists of 1) telephone assessment of needs; 2) home visit; 3) tailored resource file and 4) ongoing telephone support for 12 months. All nurse-led phone interactions with carers are tape recorded. Ten random recordings were transcribed verbatim and thematic analysis undertaken of the initial carer/nurse interaction.
Results: Six main themes emerged: taking responsibility, feeling powerless, a sense of uncertainty, experiencing and anticipating loss and needing support. Although carers embraced their role they reported a sense of powerlessness and uncertainty.
Carers expressed concerns around what the ‘end’ will look like and reported making sacrifices with reference to relationships, life choices and engaging in their own self-care. Carers also reported feelings of loss and isolation.
Conclusion: This study identifies areas of carer distress which may require on-going support. Carers are likely to benefit from additional psychosocial support while caring for a loved one diagnosed with brain cancer. Further analysis across time of these nurse-led consultations from the carer perspective is likely to highlight further areas where carers might benefit from additional support as the disease progresses.