Well-being and coping: Key aspects of unmet need of people living with glioma.

Abstract

Background: The challenges and needs of people with brain tumors are complex and unique, particularly-but not limited to-the neurocognitive impacts they experience. These effects are subsequently impactful on their primary caregivers. Evidence suggests people with glioma and their caregivers experience a range of unmet needs in the clinical care setting.

Methods: Semi-structured interviews with people across the spectrum of glioma, and their caregivers in the United Kingdom, as part of a study exploring core outcomes for use across glioma trials. Interviews were analyzed using thematic analysis.

Results: Nineteen people with glioma and seven caregivers were interviewed. Three major themes were identified: (1) Well-being, support and coping, (2) Communication and care, and (3) Impact on caregivers. People with glioma and their caregivers experience uncertainty, and progressive impacts long after diagnosis. People with glioma across the spectrum of the disease have many challenges in common including long-term adjustments, impacts of glioma and its treatment, and communication/information gaps including prognostic uncertainty. These impacts also affect caregivers. While most patients and caregivers engaged in self-directed approaches to mitigate the impacts of glioma, gaps in follow-up support for lasting effects were a major source of frustration, impacting on ability to cope and manage the effects of glioma.

Conclusions: These interviews highlight the unmet needs of people with glioma and their caregivers. A consistent, systematic, and focused approach to assessing the needs of glioma patients and their caregivers in the clinical setting and support for long-term adjustment is required.