Abstract #251  -  Special Panel Application. Care in the home revisited- a comprehensive research agenda for consultation
Authors:   Presenting Author:   Dr Lucie Cluver - Oxford University
Additional Authors:  Dr Mosa Moshabela, Dr Malega Kganakga, Ms Johanna De Beer, Ms Caroline Kuo, Mr Tyler Lane, Ms Rose Zulliger, Ms Thelma Mahlobo, Ms Marisa Casale,
Aim: This panel has three aims. Firstly, to locate AIDS-Care in the home as an important research agenda. Secondly, to report initial research results. Thirdly, to improve policy and programming utility of research through consultation in the planning stages. We are hoping to hold a consultative session on a set of linked, large-scale studies. 6 presentations will address Care in the Home from a holistic perspective, investigating: Home Community Based Carers, adult household caregivers, Young Carers (aged 8-18) and AIDS-sick recipients of care. These studies represent a research collaboration between Oxford, Witwatersrand and UKZN universities, with South African government Departments of Social Development, Health and Education, as well as major NGOs and the National Action Committee for Children Affected by AIDS (NACCA).
Method / Issue: The studies aim to examine impacts of Home-Based Care from all aspects: the AIDS-unwell person, the Community Care Worker and managers, the adult caregivers within the home, and child carers who are providing large amounts of intimate, medical and domestic care.
Results / Comments: Study 1 examines impacts of home caring for an AIDS-sick family member on 6000 children and adolescents in four provinces. Qualitative stages are completed (n=550), and a quantitative longitudinal survey will compare children in AIDS-sick, other-sick and healthy homes (www.youngcarers.netau.net). Study 2 examines burden of care amongst adult caregivers of AIDS-affected adults. This will take place in two of the four provinces, with both qualitative and quantitative stages (n=800; 400 receiving support from a community caregiver, 400 without). Key impacts examined amongst child and adult caregivers include: mental and physical health, education and employment, use of protective materials etc and risk of infection. Study 2 also examines physical and emotional experiences of care amongst AIDS-patients (n=800; 400 receiving support from a community caregiver, 400 without, with an additional random community sample to determine extent and predictors of access to HBC, n=1500). Study 3 examines barriers and facilitators amongst Home-Based Community Care Workers and their managers in two provinces (n=320). Again, mixed qualitative and quantitative methods will allow examination of factors such as policy, funding, support and stress from the service provider perspective. Recruitment and measurement overlap between studies will allow determination of causal linkages and dynamic interactions between carers (both formal and informal) and care recipients.
Discussion: This set of studies are committed to a participatory and open research design. The AIDS Impact Conference would be an ideal opportunity to gain input from stakeholders and conference participants (especially those from sub-Saharan countries other than South Africa), before we finalise instruments and go into the field. We are open to including policy-orientated items and themes which would be useful for NGOs, governments and other academics working in this area. We are aware that this is an unusual approach - to present research for criticism and improvement before it is completed - but hope that the organisers will share our sense of need to ensure that this research will be as useful for sub-Saharan Africa as possible.
Go Back