Living with persistent insomnia after cancer: A qualitative analysis of impact and management

To conduct a qualitative exploration of the lived experience of insomnia disorder and its management amongst a sample of mixed-diagnoses cancer survivors.

Twenty-seven cancer survivors with persistent insomnia were recruited to this qualitative study following completion of treatment for breast (12), prostate (7), colorectal (7), and gynaecological (1) cancers. Eleven males and 16 females (mean age 62 years), who met DSM-5 criteria for insomnia disorder, contributed to one of four focus group discussions, designed to explore the lived experience of persistent insomnia and its management within cancer care services.

Poor sleep was a persistently troubling complaint for participants, long after the completion of active cancer treatment. The impact of insomnia was significant for all participants, with six key domains emerging as those most affected: temperament, sociability, physical well-being, cognitive functioning, relationships, and psychological well-being. In terms of insomnia management, participants frequently resorted to unfruitful self-management strategies, due to the lack of professional insomnia expertise within cancer care settings. Three main themes emerged in relation to insomnia management: self-management, seeking professional intervention, and a lack of focus on sleep. A lack of clinician understanding of the importance of sleep health and the poor availability of evidence-based insomnia interventions, such as cognitive behavioural therapy for insomnia (CBT-i), were highlighted as important gaps in cancer care.

Insomnia was found to have a detrimental and pervasive impact on cancer survivors' quality of life, which persisted long into survivorship. There is an absence of professional attention to sleep throughout the cancer care trajectory, contributing to its prevalence, persistence, and impact. In order to break this cycle, sleep health should be integrated as a key aspect of cancer treatment and rehabilitation, much like maintaining a healthy diet and appropriate levels of physical activity.