title: A time-sovereignty approach to understanding carers of cancer patients' experiences and support preferences.
abstract: Much of the literature on informal carers of cancer patients is quantitative and psycho-oncology based. This literature has established that cancer carers experience higher rates of stress, depression and anxiety than their non-caregiving counterparts, with younger female carers reporting higher rates of burden and unmet needs. The reasons behind this variation and variations in support preferences are poorly understood: some carers prefer support groups and others prefer practical support. This study takes a sociological approach to exploring carers' varied experiences. Longitudinal interviews were conducted with 32 carers of a spouse with cancers of varying stages and diagnoses in the Australian Capital Territory. Analysis, informed by the discretionary time literature, shows time-sovereignty illuminates much of the variation in carers' emotional experiences and support preferences. Carers with few competing commitments and less onerous caregiving responsibilities had time to experience and unpack the range of emotions associated with cancer, and reconnect with their spouse. These carers preferred emotion-focused support. In contrast, carers with multiple commitments had little time to themselves and viewed emotions as an indulgence. These carers preferred practical support. A time-sovereignty framework offers health and support professionals a means of understanding carers' varying needs and tailoring support services.
authors.affiliation: School of Science and Health, University of Western Sydney, Penrith, NSW, Australia.
authors.forename: R E
authors.initials: RE
authors.lastname: Olson
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001315:Australia; D017028:Caregivers / Q000523:psychology*; D003258:Consumer Behavior; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000451:nursing*; D012657:Self-Help Groups; D012944:Social Support; D018454:Spouses / Q000523:psychology*; D013315:Stress, Psychological / Q000523:psychology*; D011795:Surveys and Questionnaires; D013997:Time Factors
keywords: cancer; carers; emotional; social