Exploring the impact of brain cancer on people and their participation

Introduction: Brain cancer diagnoses are rising, and the prognosis is commonly life-limiting. Brain cancer symptoms and the side effects of treatment are imposing and harmful. Little is known about the effect of these symptoms and treatments on occupational participation or about the role that occupational therapy can play for people with brain cancer. Methods: Sixteen participants with brain cancer were purposively recruited from a single site. Data was collected using semi-structured interviews. Interviews were analysed thematically. Results: Three overarching themes were identified: (a) 'there's a lot of things that I can't do anymore': adverse effects of tumour and treatments; (b) 'you adjust with adversity': accepting altered occupational participation levels; (c) occupational therapy: 'why is she here?' Conclusions: Findings highlight a connection between brain cancer symptoms, treatment side effects and occupational participation. A disconnect was found between occupational therapy services and occupational needs. Further research could explore whether realigning occupational therapy services to address the concerns identified in this study leads to enhanced occupational participation through the journey of brain cancer.