TY - JOUR
T1 - Perceived need for and benefits of brain tumour specific psychological support
T2 - A longitudinal mixed methods study of the Telehealth Making Sense of Brain Tumour (Tele-MAST) programme
AU - Ownsworth, Tamara
AU - Lion, Katarzyna Małgorzata
AU - Pinkham, Mark B.
AU - Jones, Stephanie
AU - Koh, Eng Siew
AU - Chan, Raymond
AU - Shaw, Joanne M.
AU - Dhillon, Haryana M.
AU - Billin, Abigail
AU - for the BRAINS Program Investigators
PY - 2025/5/7
Y1 - 2025/5/7
N2 - 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.
AB - 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.
KW - Brain tumour
KW - Psychological support
KW - Qualitative research
KW - Telehealth
KW - Treatment preferences
UR - http://www.scopus.com/inward/record.url?scp=105004582890&partnerID=8YFLogxK
UR - http://purl.org/au-research/grants/NHMRC/1194051
U2 - 10.1080/09602011.2025.2499742
DO - 10.1080/09602011.2025.2499742
M3 - Article
AN - SCOPUS:105004582890
SN - 0960-2011
JO - NEUROPSYCHOLOGICAL REHABILITATION
JF - NEUROPSYCHOLOGICAL REHABILITATION
ER -