Expanding the care continuum for HIV/AIDS: bringing carers into focus
1International Center for Research on Women, Washington, DC, USA, 2International Labor Organization, Beirut, Lebanon and 3Levy Economics Institute, Bard College, NY, USA
Correspondence: Dr Jessica Ogden, ICRW, 1717 Massachusetts Ave., NW, Ste. 302, Washington, DC 20036, USA. Tel: +1–202–797 0007; E-mail: jogden{at}icrw.org
This review explores the specific issues that cluster around the provision of ‘care’ in the context of the global HIV/AIDS pandemic. We argue that the economic concept of the ‘care economy’ provides a useful lens through which to view the HIV/AIDS pandemic, as it illuminates the increased labour, time and other demands placed upon households and shows that the assumptions on which norms and expectations of care provision are based are increasingly being challenged. While some strides are being made in policy and programming around HIV and AIDS-related care, much more needs to be known and done to enable individuals, families and households to survive in a world shaken by AIDS. Care, we argue, provides fundamental public goods. A strategy of simply downloading responsibility for care onto women, families and communities can no longer be a viable, appropriate or sustainable response. And this is no less true in this current era of expanding treatment options for people living with HIV and AIDS. Our analysis suggests that there are two distinct but inter-related areas for policy intervention and development. The first concerns international health policy and we argue that the international ‘care agenda’ needs to incorporate an understanding of the care economy into its frameworks and strategies for action, giving particular focus to the caregiver. The second area encompasses a broad national healthcare policy agenda, where a range of public, private and non-governmental sector actors come together with common purpose to ensure that households affected by HIV and AIDS are protected and enabled to survive.
Key Words: HIV/AIDS, care, gender, home-based care, caregiver
1According to Foster (2002b), households are often thought of as ‘a group of people, living together, who are usually economically interdependent’, a definition that implies a certain degree of stasis, as well as coherence and autonomy of one household vis á vis others. It is increasingly apparent, however, that households are actually more dynamic than this and are undergoing important (but still poorly understood) changes, particularly in highly HIV-affected communities (see also Barnett and Blaikie 1992). In this paper we use the terms ‘household’ and ‘family’ with full awareness of these dynamics, which lie at the heart of our concern with ‘care’.
2For a useful review of methods for and policy impact of costing the care economy.
3Akintola (2004: 9-11) provides a useful history of the origins and development of home-based care in South Africa and Uganda.