Exploring the experiences of adults adjustment when living with a primary brain tumour

Background: Brain tumours are the ninth most common cancer in the UK, and account for 3% of all new cancer cases.

Aim: To understand the impact of living with a primary brain tumour and identify adjustments that patients make in order to cope with life. This also encomapsses the impact of interventions like support groups in terms of care and therapeutic value.

Methods: After ethics approval, a qualitative approach was employed which set out to interview eleven adult patients living with primary brain tumours using face-to-face individual semi-structured interviews. Interview data were coded and thematic analysis used.

Findings: Four themes were developed, namely: adjustment; loss of independence; support; and health and symptoms.

Conclusion: Living with a brain tumour leads to an inevitable adjustment to maintain day-to-day life. The findings suggest there are a number of adjustments that patients make to maintain some independence. Many people valued the support they received from support groups, while others felt the support was inadequate. The mandatory loss of a driving licence for these people in the UK was most concerning; leading to loss of confidence, while reducing them to immediate dependence on others for travel. While support was provided, there was an apparent omission in the provision of psychological support. Oncology and palliative care nurses are in key positions to explore psychological concerns and offer tailored support.