Identifying and understanding how people living with a lower-grade glioma engage in self-management

• Published in: Journal of cancer survivorship 2024-12, Vol.18 (6), p.1837-1850
• Main Authors: Rimmer, Ben, Balla, Michelle, Dutton, Lizzie, Lewis, Joanne, Brown, Morven C., Burns, Richéal, Gallagher, Pamela, Williams, Sophie, Araújo-Soares, Vera, Finch, Tracy, Menger, Fiona, Sharp, Linda
• Format: Article
• Language: English
• Subjects: Adult; Adults; Aged; Brain cancer; Brain Neoplasms - psychology; Brain Neoplasms - therapy; Brain research; Cancer Survivors - psychology; Charities; Disease management; Female; Glioma; Glioma - pathology; Glioma - psychology; Glioma - therapy; Health Informatics; Health Promotion and Disease Prevention; Humans; Interviews; Male; Medical prognosis; Medicine; Medicine & Public Health; Middle Aged; Neoplasm Grading; Oncology; Patients; Preventive medicine; Primary Care Medicine; Public Health; Qualitative Research; Quality of Life; Quality of Life Research; Self Care; Self-Management; Tumors; United Kingdom; Young Adult
• ISSN: 1932-2259; 1932-2267; 1932-2267
• DOI: 10.1007/s11764-023-01425-x

Purpose Lower-grade gliomas (LGG) are mostly diagnosed in working-aged adults and rarely cured. LGG patients may face chronic impairments (e.g. fatigue, cognitive deficits). Self-management can improve clinical and psychosocial outcomes, yet how LGG patients self-manage the consequences of their tumour and its treatment is not fully understood. This study, therefore, aimed to identify and understand how LGG patients engage in the self-management of their condition. Methods A diverse group of 28 LGG patients (age range 22–69 years; male n  = 16, female n  = 12; mean time since diagnosis = 8.7 years) who had completed primary treatment, were recruited from across the United Kingdom. Semi-structured interviews were conducted. Informed by a self-management strategy framework developed in cancer, directed content analysis identified and categorised self-management types and strategies used by patients. Results Overall, 20 self-management strategy types, comprising 123 self-management strategies were reported; each participant detailed extensive engagement in self-management. The most used strategy types were ‘using support’ ( n  = 28), ‘creating a healthy environment’ ( n  = 28), ‘meaning making’ ( n  = 27), and ‘self-monitoring’ ( n  = 27). The most used strategies were ‘accepting the tumour and its consequences’ ( n  = 26), ‘receiving support from friends ( n  = 24) and family’ ( n  = 24), and ‘reinterpreting negative consequences’ ( n  = 24). Conclusions This study provides a comprehensive understanding of the strategies used by LGG patients to self-manage their health and wellbeing, with a diverse, and substantial number of self-management strategies reported. Implications for Cancer Survivors The findings will inform the development of a supported self-management intervention for LGG patients, which will be novel for this patient group.