Abstract
BackgroundLittle is known about the time spent on specific health related activities by older adult informal carers who assist people with chronic illness. Research has not yet addressed the association between carer health status and their care demands. Such information could inform policy and health system efforts to manage chronic illness.MethodsWe conducted an Australia wide survey using recall questionnaires to record time use. The study asked how much time is spent on “most days” for the most common activities like taking medication, self-treatment and testing, and how much time in the last month on less common activities like attending a physician or shopping associated with health needs. The survey was mailed to 5,000 members of National Seniors Australia; 2,500 registrants on the National Diabetes Services Scheme; and 3,100 members of the Australian Lung Foundation. A total of 2519 people responded, including 313 people who identified as informal carers. Statistical analysis was undertaken using Stata 11. Standard errors and confidence intervals were derived using bootstrapping techniques within Stata 11.ResultsMost carers (96.2%) had chronic illness themselves, and those with greater numbers of chronic illnesses were those who faced the greatest overall time demands. The top decile of carers devoted between 8.5 and 10 hours a day to personal and caring health related activities. Informal carers with chronic illness spent more time managing their own health than people with chronic illness who were not informal carers. These carers spent more time on caring for others than on caring for their own health. High levels of caring responsibility were associated with poorer reported carer health.ConclusionsPolicy and health care services will need to adapt to recognise and reduce the time burden on carers who themselves have chronic illness. More carefully targeted investment in the social infrastructure of formal care would free up carers for other activities (including their own care) and holds the potential to improve the quality of life as well as the health outcomes of this population.
Highlights
Little is known about the time spent on specific health related activities by older adult informal carers who assist people with chronic illness
Further samples were drawn from the National Diabetes Services Scheme (NDSS), a government funded service which provides subsidies for diabetes materials with 280,000 of its registrants aged over 50 years and the Lung Foundation Australia (LFA), a member organisation which supports research into lung conditions and provides member support (sample of all 3,109 persons with chronic obstructive pulmonary disease (COPD) or who supported a person with COPD
Response rates were highest in the National Seniors Australia (NSA) sub-sample (28.6%) which best represents the health status of the overall older population, and lowest in the sub-sample of those registered with NDSS, all diagnosed with diabetes mellitus (17.1%)
Summary
Little is known about the time spent on specific health related activities by older adult informal carers who assist people with chronic illness. Research has not yet addressed the association between carer health status and their care demands. Such information could inform policy and health system efforts to manage chronic illness. Health policy responses have included, among other things, increased discourse and support for patient self-management [1,2]; which in practice often implicates family members and friends (‘carers’ hereafter) of people with chronic illness [3,4,5]. Australian and international studies have suggested that caring activities can be very demanding and can adversely affect carer health [3,8]. Carers are relied upon to provide substantial levels of unpaid support including to those with chronic illness
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