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Costs and Benefits of Caregiving Caregiving and Health Care Reform Creating Better Conditions for Care
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Who Cares?
Providing care to people in their own homes is frequently seen as a rational and cost-efficient alternative to institutional care, made doubly attractive by the fact that most care recipients express a preference for care that allows them to remain in their own homes. Much of this care is provided by unpaid caregivers, as well as nurses, home health aides, personal attendants and other home care service providers. As noted by the National Forum on Health (1997), "Home care services can assist in preventing, delaying or substituting for long-term care or acute care alternatives."[1] It is also important to consider that caregiving in the home is usually understood as women’s work, performed as a labour of love for family or friends. This view masks the fact that unpaid caregiving is work that requires time, skills and resources and may not always be voluntary. Who provides care in the home, and under what conditions, is not just a personal matter. It is affected by decisions made to manage costs in the health care system. New research from the Centres of Excellence for Women’s Health asks us to take a closer look at the tasks, meanings and consequences of caregiving in the home and in relation to health care reform. Applied to this research, the question Who Cares? elicits a double meaning. Taken literally, the answer is women, as women represent the majority of paid health care workers in institutions and paid and unpaid health care workers in the home. There is a second meaning to the question. Participants in a number of the studies reported on in this issue of the Research Bulletin declare that we are not caring enough about paid and unpaid caregivers and care recipients. It is hard to talk about the human experiences of illness, disability, rehabilitation and death and the ways in individuals and communities do or do not support these experiences. The studies presented here illuminate some of the day-to-day realities of diverse caregiving situations: family members and health professionals caring for stroke survivors, mothers caring for children with cancer and palliative care workers (friends and paid caregivers) caring for people with AIDS. These studies also investigate the circumstances of paid caregiving in the home and hospital in an environment of restructuring, and the emerging reality of paid caregivers passing on caring tasks to unpaid caregivers. Indeed, some of the research presented here shows how the boundaries between the two groups of caregivers blur as family members are required to provide highly technical medical care or to be on-call to the care recipient 24/7. These diverse situations demonstrate that, in the end, someone, whether family member, paid health care provider, or a combination of both, must care. The National Forum on Health warned of the potential for health system reform to impose burdens on women, arguing that "community-based care" should not "become a euphemism for the conscription of women to provide unpaid health care services."[2] While caregiving can be a deeply meaningful experience, it may also impose psychological, social and economic costs upon the caregiver. A consistent recommendation from the studies highlighted here is that caregivers and care recipients alike require more support in order to sustain home care as a viable option for health care. A significant challenge raised in this issue of the Research Bulletin is how to support caregivers with sufficient resources. At the same time, how can we create choice so that women who do not have the time, resources, skills or desire to care are not conscripted into it? Who cares? We all should because over our lifetime we are all likely to require care, and many of us will find that we are needed to provide it. As one step towards creating better conditions for care—in the home or elsewhere—delegates to the National Think Tank on Gender and Unpaid Caregiving (November 2001) drafted the Charlottetown Declaration on the Right to Care. Reproduced in its entirety here, the declaration stresses that home care needs to be the objective of a publicly funded health care system—so that everyone will care. Ann Pederson NOTES |
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