Improving quality of care for patients with high-grade glioma and their informal caregivers: insights from focus groups with healthcare professionals

Abstract Background There is a concerning prevalence of unmet needs affecting both patients with high-grade glioma and their informal caregivers. By exploring the experiences and attitudes of healthcare professionals (HCPs) in regional and municipal services, this study aims to identify barriers and enablers in improving the quality of care for patients with high-grade glioma and their informal caregivers through the disease trajectory. Methods A qualitative approach using focus group interviews was employed, involving HCPs across healthcare levels. The interviews, conducted physically and digitally from November 2024 to March 2025, followed semi-structured guides. The inclusion criteria were HCPs with direct experience in caring for patients with high-grade glioma or those who were in contact with their informal caregivers. The data was analyzed using inductive qualitative content analysis. Results A total of 12 interviews were conducted with 44 HCPs. The sample included 35 (79%) participants from four regional hospitals and 9 (21%) participants from municipal healthcare services. Two categories were derived from the data: Organization and structural decisions and Interactions and interpersonal dynamics. These categories illustrate advantages and limitations in the local healthcare system together with interpersonal dynamics and mental attitudes as expressed by the HCPs interviewed. Conclusions The study underscores the need for collaboration and better communication strategies across healthcare services, together with comprehensive patient and informal caregiver education on the potential future needs associated with the patients’ health trajectory. Also, the study shows that a better understanding of the consequences of cognitive impairments are critical steps towards enhancing care effectiveness.