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Reducing the effects of HIV/AIDS in rural communities through a holistic approach by volunteer caregivers in Shiselweni, Southern Swaziland

Improvement Report
Author(s): 
Arnau van Wyngaard

Topics: Adherence to treatment, Community and home-based care for PLWHA, Directly observed treatment, DOTS, HIV counseling and testing, HIV/AIDS basic care and support, Social mobilization, Stigma, TB-HIV

Region and Country: Swaziland

Organization: Shiselweni Reformed Home-Based Care (SHBC)
The Report
Problem: 

With an adult prevalence rate of 26% and an antenatal prevalence rate of 42%, Swaziland is the country in the world with the highest HIV infection rate. Shiselweni is one of four regions in the Kingdom of Swaziland, the area most affected by the HIV pandemic. Fueled by denial and the fear of stigmatization, it seemed that there was no way in which an impact could be made in this region, with its population of 208,000. There was a need for a new initiative:

  • to convince people that AIDS is not a death sentence;
  • that it is crucial to be tested, and
  • if the person qualifies for it, to start anti-retroviral therapy (ART);
  • to continue taking the prescribed medication meticulously;
  • and to provide holistic care to PLWHA in a way that restores dignity and hope to the client, their family and their community.
Intervention: 

In 2006 Shiselweni Reformed Home-Based Care (SHBC) <www.shbcare.org> came into existence. Making use of volunteer community members motivated to change their own communities, an initial group of 32 community members were thoroughly trained by health professionals in holistic care of people living with HIV and AIDS in an area known as Dwaleni and they acquired all the skills necessary to become efficient community caregivers - this, in spite of the fact that 50% of the caregivers have none or very little school education. Furthermore, most of these caregivers are living in extreme poverty (less than US$1 per day) and many of them are also HIV-positive.

The trained caregivers started visiting their neighbors and family members and as a trusting relationship developed, they were able to share their knowledge about HIV and AIDS with them. Breaking through the challenges of denial and stigmatization, they convinced community members to visit their closest HIV counseling and testing (HCT) facility in order to be tested to determine their HIV status. If they were HIV-positive, the caregivers encouraged them to start ART and, through initial daily visits and eventually weekly visits, the caregivers reminded them to take their medication as prescribed. Through the intervention of the SHBC caregivers, family members and friends of those who were HIV-positive started giving adherence support to them.

As news of the success of the program started spreading, other communities communicated the desire to start similar initiatives in their areas and by the end of 2011 SHBC had trained thirty communities with 850 volunteer caregivers, presently reaching 2700 clients as well as their family members on a monthly basis.

Results: 

Starting in 2008, a simple yet highly effective Monitoring and Evaluation system was implemented for use by all SHBC caregivers, indicating the following results of the program:

From 2008 - 2011:

  • 13,351 people were referred for HCT
  • 7,893 were referred for ART
  • 10,528 people were referred for TB testing
  • 1,001 of the clients are on ART
  • 358 of the clients are on TB treatment

From the following statistics taken from 2008 to 2011, it can be seen that the death rate of SHBC clients in the rural communities of Shiselweni has dropped drastically from 35.3% to 14.8% – probably the most significant proof of the positive impact of the SHBC’s holistic approach.

  • 2008: 621 of 1,758 clients died (35.3%)
  • 2009: 506 of 2,397 clients died (21.1%)
  • 2010: 448 of 2,577 clients died (17.4%)
  • 2011: 395 of 2,665 clients died (14.8%)
Lessons: 
  • Never underestimate the ability of motivated people to acquire and apply skills necessary to change their communities, regardless of their literacy level and socio-economic status
  • When making use of volunteers, ensure that they all understand the essence of volunteerism, i.e. that they will not receive a salary for their services
  • The success of SHBC can be attributed to the philosophy of volunteerism, which assures commitment to and sustainabilty of the program, because it is free of the constraints of financial compensation in a country which is on the brink of bankruptcy
  • Start small - grow big. In 2009 the program expanded with 10 new groups - about 300 new caregivers. This called for special management and governance skills to direct the rapid expansion of SHBC 
  • Through consultation acknowledge community leaders (e.g. traditional chiefs and political leaders) as they are crucial for the success of the program through their support of the community caregivers in their areas
Year: 
2012