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

Abstract

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 their condition. This also encomapsses the impact of interventions like support groups in terms of care and therapeutic value.

Methods: After ethical approval, a qualitative approach was employed, which set out to interview 11 adult patients living with primary brain tumours. The interviews were conducted face-to-face and were 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 that the support they received was inadequate. The mandatory loss of a driving licence for people in the UK was the most concerning. Its removal led to a loss of confidence and made them immediately dependent 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.