Living with a lower-grade glioma : exploring the potential for supported self-management

Abstract

Background: Lower-grade gliomas (LGG) are a subgroup of primary malignant brain tumours. People with LGG may live long-term with tumour-specific symptoms and impairments (e.g. seizures, cognitive impairment), alongside the uncertainty of an incurable condition. Supported self-management can improve clinical and psychosocial outcomes, such as quality-of-life (QoL). However, the self-management experiences of people with LGG are unclear. This thesis aimed to understand the lived experiences of people with LGG and the potential for supported self-management, from multiple perspectives. Methods: A quantitative systematic review of health-related QoL in people with LGG was followed by three semistructured interview sets. These comprised purposive samples of people with LGG (n=28), informal caregivers (IC) (e.g. partners) (n=19), and healthcare professionals (HCP) who support adults with brain tumours (n=25). Participants were recruited across the United Kingdom, through four National Health Service hospitals and the Brain Tumour Charity. Interviews were audio-recorded, transcribed, then analysed using inductive thematic analysis, framework method, or directed content analysis. Results: Findings are reported across six publications. People with LGG experience extensive QoL impacts (e.g. seizures, fatigue), with considerable implications on day-to-day life (e.g. work, relationships). They show willingness to self-manage but several factors (e.g. knowledge, health status) influence their ability to self-manage effectively. ICs provide wide-ranging support (e.g. practical, healthcare advocacy) but experience difficulties with preserving the care recipient’s independence. HCPs can empower people with LGG and ICs with the necessary tools and information, though challenges (e.g. identifying support needs, HCP collaboration) hinder the implementation of self-management support. Conclusions: This thesis provides novel and comprehensive understanding of the need, and potential for, supported self-management in people with LGG. These insights could extend to other brain tumours or progressive neurological conditions. Overall, this represents critical groundwork for the development and implementation of person-centred self-management support, to improve the QoL of this underserved population.