Perceived need for and benefits of brain tumour specific psychological support: A longitudinal mixed methods study of the Telehealth Making Sense of Brain Tumour (Tele-MAST) programme.

Abstract

The Making Sense of Brain Tumour programme delivered via videoconferencing (Tele-MAST) demonstrated efficacy for improving mental health and quality of life in people with primary brain tumour (PBT). This study explored the perceived need for and benefits of the Tele-MAST programme, from the perspectives of individuals with PBT and family members. Individuals with PBT completed semi-structured interviews prior to Tele-MAST, after Tele-MAST, and at 3-months follow-up. Twenty-four participants (M age = 46.26, SD = 11.45; 63% high-grade glioma) commenced Tele-MAST (including 6 couples) and 16 completed the programme (67% retention). Reflexive thematic analysis identified PBT as a unique and complex illness with multiple unknowns and emotional impacts. Individuals often felt lost and cast aside in the healthcare system as they searched for understanding and hope regarding the illness. Unmet psychological support needs were typically addressed by experiencing Tele-MAST, a person-centred intervention in which the complexities of PBT were understood from the outset and individuals felt supported to cope with and find meaning in their illness. Providing early and ongoing access with longer-term support options was considered key to improving Tele-MAST. These findings underscore the value of early access to tailored psychological support delivered flexibly according to individuals' ongoing support needs and preferences.