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

Abstract

Objectives.To conduct a qualitative exploration of the lived experience of insomniadisorder and its management amongst a sample of mixed-diagnoses cancer survivors.Methods.Twenty-seven cancer survivors with persistent insomnia were recruited tothis qualitative study following completion of treatment for breast (12), prostate (7),colorectal (7), and gynaecological (1) cancers. Eleven males and 16 females (mean age62 years), who met DSM-5 criteria for insomnia disorder, contributed to one of fourfocus group discussions, designed to explore the lived experience of persistent insomniaand its management within cancer care services.Results.Poor sleep was a persistently troubling complaint for participants, long after thecompletion of active cancer treatment. The impact of insomnia was significant for allparticipants, 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 unfruitfulself-management strategies, due to the lack of professional insomnia expertise withincancer 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 ofclinician understanding of the importance of sleep health and the poor availability ofevidence-based insomnia interventions, such as cognitive behavioural therapy forinsomnia (CBT-i), were highlighted as important gaps in cancer care.Conclusions.Insomnia was found to have a detrimental and pervasive impact on cancersurvivors’ quality of life, which persisted long into survivorship. There is an absence ofprofessional attention to sleep throughout the cancer care trajectory, contributing to itsprevalence, persistence, and impact. In order to break this cycle, sleep health should beintegrated as a key aspect of cancer treatment and rehabilitation, much like maintaining ahealthy diet and appropriate levels of physical activity.