A Gendered Analysis of Burden of Care on Home and Volunteer Caregivers in Uganda and South Africa

This 47-page paper summarises comparative research which shows that home-based care (HBC) programmes in South Africa are inadequately developed compared to those in Uganda. HBC programmes and projects in South Africa are described as responding to crisis management which makes them unsustainable. Further, the paper describes them as faced with gender inequalities because of the traditional roles that young girls and women play as caregivers. This situation compounds the challenges faced by health services and non-governmental organisations (NGOs) concerned with developing home-based care policies and programmes.

The study seeks to achieve its six objectives by:

• Describing the characteristics of family and volunteer community caregivers and the nature of the work they carry out;
• Documenting the burden of caring for PLWHAs and determine whether it impacts differently on the health and welfare of male and female caregivers and if so, how?
• Presenting the factors affecting men’s involvement in the care of people living with HIV/AIDS (PLWHAs);
• Documenting the challenges and needs of family and volunteer community caregivers and care programmes;
• Describing the nature and magnitude of support available to volunteer and family
  caregivers from households members, community members, government and nongovernmental agencies;
• Providing information about policies and programmes that will mitigate the burden of care on families and communities.

The paper reports on the HBC programmes promoted by the governments of both countries. It comments on support provided by NGOs and volunteer-based home care projects which are often set up by religious congregations and concerned community members.

Research findings describe the four major kinds of stress experienced by home care providers as:
physical stress, emotional and psychological stress, social stress, and economic stress. The report details the effects of these condictions on caregivers and comments on the particular plight of child givers.

Different models of HBC are offered including a comparison between South Africa and Uganda which demonstrates that South African models are community-oriented, whereas Uganda's are community-based.

Recommendations derived from the paper:

• Incorporate gender sensitive assessments in reviews of home-based care programmes.
  Many countries are signatories to the Millenium Development Plan which holds its third objective as promoting gender equality and empower women.
  However, home-based care in many communities in South Africa may prevent achievement of this goal. The use of girls, and in some cases boys, as primary or secondary caregivers affects their education.
• Refine volunteer-based programmes – providing stipends and/or designing them to be steps for career development and formal job employment, in order to make them attractive and to reduce attrition rates.
• Recognise that the demands of affected families are varied and complex and are not restricted to basic nursing care and, most importantly, change over time.
• Introduce or revive mental health programmes at the primary care leveI in view of the psychological and emotional stress of caregiving.
• Ensure that governments and health departments acknowledge that home-based care is not inexpensive. In South Africa, it appears to be appropriate, but the costs are hidden and defrayed and fall upon the caregivers and communities - those least able to carry the burden. The current approach is unsustainable.