To our knowledge, our study is the first to measure time spent on specific HRA by informal carers who themselves have a chronic illness. The median time spent on health related caring activities of between 30.5 and 47 hours per month is comparable with median times estimated by Bittman et al.  of one hour and 27 minutes of care daily (45 hours per month). Their estimates included all care (including care of people with disabilities) rather than only health related care. Their study encompassed carers of all ages rather than the older cohort we have studied.
Informal carers did engage in numerous HRA to manage their own health and to assist others in the management of theirs. Some activities were undertaken by most informal carers, for example dealing with medications. More time consuming activities such as preparing special foods and carrying out treatments were carried out by fewer respondents.
The outstanding finding from these results is that informal carers with a chronic illness spent more time on their own HRA than respondents who were not informal carers, and when this was combined with their time caring for others, spent between four and nine times as long on HRA as non-carers. Those in the highest decile spent on average between eight and 10 hours each day on HRA.
We also identified a pattern of increasing time spent on HRA as the carer’s number of chronic illnesses increased. This pattern was also associated with the number of chronic illnesses of the care recipient. While increased morbidity was associated with increased time use, informal carers with chronic illnesses spent more time caring for others than engaging in activities associated with their own health care. The number of chronic illnesses a person had was strongly correlated with the time their carer spent on HRA. It is likely that the care recipient’s level of disability would also increase with their number of illnesses. Within the Diabetes sub-sample the reported prevalence of chronic pain and depression/anxiety was almost twice as higher for carers (48.1% and 42.8% respectively) than non-carers (25.3% and 20.4% respectively). We have reported the prevalence of chronic illnesses among survey respondents in another article, where self-reported rates of chronic pain and depression/anxiety were lower across the three sub-samples .
Implications of findings for carer support strategies: allowances, respite and targeted services
In most industrialised countries the desire to minimise unnecessary hospital admissions and costly residential care is driving policies to support older people living within their communities, increasing reliance on the ‘unpaid workforce’ of carers . Dejonge et al. , for example, have suggested a model of chronic illness management that reduces costs by shifting care into the community. However, while the model they propose might improve aspects of both the patient and carer experience, it pays no attention to the negative impacts of community-based care on carers.
Sustainable and effective informal care requires “centralised information dissemination, improved care coordination, merged funding streams, and expanded consumer direction” . However, these policy goals also require a more nuanced understanding of the situation and actual capacities of carers. Our findings suggest that existing faith in the ongoing availability and capacity of informal care may be misplaced. Many carers face time demands which appear manageable, for healthy carers with limited other demands on their time, at between two and three hours a day. However, other carers managing their own chronic illnesses (s) and diminishing functional abilities as well as providing care to another are likely to be struggling. How, though, are policymakers to decide what changes are needed and to whom they should be targeted for best outcomes?
Welfare systems have utilised three key strategies to support informal carers; carer allowances, respite care and targeted service provision. In Australia, for example, carer allowances and respite care are part of the social security system, with home and community care programs generally managed within the healthcare system. Findings from this study suggest much of the burden of care problem cannot be solved simply by providing income supplements (although these would help) unless these are adequate to buy resources that reduce time demands on carers, and those resources are available. Minor increases in income support are unlikely to assist in better management of medications, transport to health-related appointments, allow access to adequate respite services or improve availability of affordable special foods. Some of the highest pressure points come from level of the carer’s own health, especially those with five or more chronic diseases. There is no simple way to identify this group and target additional resources to assist them.
To what extent should respite services for informal carers be part of future solutions? The Decima report from Canada suggests respite is imperative for caregivers . Studies, both in Australia and internationally, have indicated barriers to the short-term use of respite services such as carers being unable to access services when they need them, and users feeling guilty about taking respite [3, 36]. While the cost effectiveness of respite services remains under debate  the need for informal carers to support people with chronic illness is evident, and as other studies have shown, so too is their need for respite . The high presence of chronic illness in the informal care population suggests even more urgent attention to addressing barriers of respite use is warranted. Future research to inform design of respite services should explore whether carer chronic illnesses are an additional barrier to respite use.
Furthermore, early work by Valderas and colleagues suggests that some combinations of illnesses may have characteristics in terms of time use and functional impairment that could lead to a better understanding of the needs of both carers and the people they care for [38–40]. Multi-morbidity research of carer populations could lead to better targeting of respite and other forms of support for people with multiple illnesses.
This study shows that some HRAs lead to the much higher demands on time, providing a focus to improve targeting of services. For example, while not relevant to all carers, preparing special foods and carrying out treatments are tasks associated with large blocks of time. In the case of preparing special foods one obvious option to reduce time burdens seems to be better and more focused utilisation of services of the style of “Meals on Wheels”. In Australia, Meals on Wheels (a non-government service run by volunteers) provides affordable meal preparation and delivery services for people who need it. People eligible for this service include those who are housebound, frail adults, people with a disability or illness and their carers. People with special dietary requirements and chewing or swallowing problems are catered for.
Strategies for enhancing Meals on Wheels-type solutions could move in two directions; expanding the range of meals to meet special dietary needs posed by multi-morbidity; and developing systems which overcome some of the complexities of current temporal arrangements. Regarding this second option, to meet recommended health safety targets meals must be prepared within a particular time and delivered within a particular time, with consumers (and often carers) at home and ready to consume or refrigerate meals when they arrive [41, 42]. While the program currently does free up carers from preparing foods, it cannot offer them complete time flexibility (which has been raised as a point of frustration by carers in our previous qualitative research ). Strategies that move in these two directions could make significant reductions on time demands of some carers.
Like the preparation of special food, clinical treatments can be extremely time demanding for some groups of patients and carers. While some treatments cannot be safely or easily sped up, advances in ambulatory peritoneal dialysis, ‘satellite’ haemodialysis, and nocturnal dialysis treatments have significantly improved time use experiences of patients and carers by increasing the flexibility of when and where treatments can be undertaken [43, 44]. The value of flexibility that nocturnal treatments offer to patients and carers’ waking lives cannot be over-stated, and may provide a model for consideration in relation to other time demanding treatments.
There are undoubtedly a wide range of measures available to simplify tasks and reduce time demands on carers. In the Australian context, for example, Dose Administration Aids (DOAs) such as Webster blister packs for the delivery of pharmaceuticals significantly reduce the amount of time people spend on sorting medications, but are not covered by the publicly funded Pharmaceutical Benefits Scheme. A subsidy would reduce cost barriers to the wider use of DOAs. The survey also found that failure to co-ordinate medical appointments leads to repeated travel and increased waiting times for carers. Virtual appointments and case conferencing have been identified as potential avenues for improving care coordination, however in the Australian setting up take has been low and the challenges posed by rural and remote locations have been considerable. Further efforts to better co-ordinate care are required.
Finally, an awareness of this pressing time burden strengthens arguments for constant critical appraisal of the efficacy for standard – often time consuming – self-management tasks. Research by Henderson and colleagues, for example, has identified that for people with diabetes, testing blood glucose levels may not be the most effective use of their time as they do not correlate with improved health outcomes .
This study is based on a relatively small number of survey respondents, from a survey with a 24% response rate. However, while time estimates vary between the sub-samples, broad patterns are similar. While we have shown that the time allocation to HRA varies according to the number of chronic illnesses experienced by carers, it also likely to depend on the health and functional ability of care recipients, how long carers or their care recipients have had a particular illness, the type of illness (of carer or care recipient), and/or the extent to which a care recipient can access support from others.
While we have discussed the findings in terms of health service options for improving support to carers, we acknowledge that in this survey we did not ask respondents to provide information on what kinds of support they wanted. However, we did ask this of participants in a previous qualitative study , and their responses have helped shape our discussion of health service support options.
Suggestions for future research
As noted above, we suggest further research is warranted concerning carer multi-morbidity and barriers to respite use, including addressing other factors that influence time spent on HRA and the cost of that time to carers. This study has not developed the wider implications of caring, for example the impact of caring on personal health or the quality and duration of sleep [8, 13] or ‘weathering’ associated with high physical, emotional and mental demands . Nor has it addressed other temporalities associated with care such as process time, which references the multiple and interacting processes at play at a given time, that influence for example, the way we perceive and measure time spent caring [23, 42]. The survey did not measure activities forgone due to caring and self-care responsibilities. Research addressing that would provide insight into the true ‘cost’ of time spent caring. The authors suggest that future research should link time spent on HRA with these kinds of factors to deepen our understanding of the actual ‘work’ of informal care.