ADRA bringing hope to people living with HIV
ADRA Swaziland bringing hope to people living with HIV
The country’s HIV response has come a long way. The late 1990s and early 2000s was a period when we lost countless relatives due to AIDS-related illnesses. We witnessed a period when our very hope for the future, children, passed away at birth or before their fifth birthday. During this era, pregnant women left home for the hospital at the onset of labor pains, with the hope of bringing back a bouncing baby boy or girl, but sadly came back home empty handed, or with ailing infants and themselves so ill so much that they were bedridden as HIV progressed to AIDS, slowly eating away promising souls, leading to early death.
Funerals became the order of the day as the AIDS scourge took hold and the grounds that were once used as fields for cultivating crops and those used as grazing lands, swallowed up men and women who were at the very peak of their working lives. The old adage we had once boasted about, that there were no orphans in Swaziland, seemed a bad joke as the elderly were left to fend for themselves. The alarming rates of AIDS-related deaths hit the very core of our society, tearing our proud extended family values apart and giving birth to orphaned and vulnerable children. Today, of 45 percent of children under 18 are either orphaned or vulnerable.
HIV Stigma and discrimination, attributable to a lack of comprehensive knowledge about and fear of AIDS, set in. At the time, the acquisition of the disease, without treatment, meant sure death. Stigma came with many human rights violations, driving the impact of the scourge to epidemic proportions as people refused to offer themselves for testing, with affected families being chastised by fellow members of their communities and service providers themselves fearing for their safety. I pray that this was all in the past and never to be relived.
Birth of early activists and initial support groups
As alluded in last week’s article, “Life shapes you, and if you do not respond accordingly, it breaks you!”. In the absence of treatment, people living with HIV (PLHIV) had no legal claim to non-discrimination, privacy, self-determination and justice, only a personal will to live led to survival. The kingdom saw the rise of heroes in the likes of Albertina Nyathi, Gcebile Ndlovu, Hannie Dlamini, Siphiwe Hlophe, Vusi Matsebula, and many others who publicly disclosed their status and rejected the stigma associated with being diagnosed with HIV. Those are the early foot soldiers. Brave men and women who marched on, to make us to introspect, to look inwards for better choices while fostering compassion for those who were infected.
These soldiers brought the HIV fight closer to the home front, by attaching a face to the ‘problem’, the face of a human. Swaziland being as small as it is, the face quickly became a relative, a friend, colleague and/or a partner. In the absence of treatment, these brave men and women pioneered community peer to peer programmes that ensured that PLHIV received moral and psychosocial support from each other. This gave birth to the formation of first the country’s first support groups for people living with HIV – with the Swaziland National Network of People Living with HIV and AIDS (SWANNEPHA) established later on. Positive Living programmes coupled with lived experiences of those who were willing to share their stories, provided hope of a prolonged life.
As the world (Swaziland included) learned more about HIV and AIDS, membership to a support group became an important component of psychosocial care in HIV patients. The support groups increase patients’ literacy, leading to the members becoming significantly knowledgeable about HIV related issues. This fostered more favorable attitudes towards the illness and in-turn towards the antiretroviral treatment medicines when they became available.
The perceived benefits of support groups led to a rise in the modern day, non-governmental organizations initiated groups, whose members convened at health facilities and / or in the community. NGOs provided training to willing PLHIV, who in-turn addressed the special needs of fellow PLHIV, their partners and members of their immediate family. The groups served the purpose of sharing experiences; encourage disclosure, reducing stigma and discrimination, improving self-esteem, enhance ART patients’ tolerance and psychosocial functioning, and medication adherence and improved retention in HIV care.
Building hope for all
The Adventist Development and Relief Agency (ADRA), is a non-governmental, independent humanitarian agency of the Seventh-day Adventist church, was established for the specific purposes of community development and disaster relief. As a church-based organization, ADRA Swaziland provides assistance to those in need without regard to ethnicity, gender, or political or religious association. ADRA's actions are holistically oriented and are defined by Christian values: Man has been created in the image of God; All men are equal before God; Man's dignity is inviolable; and Every human has a right to the quality of life.
As part of the projects which increase self-reliance of recipients, ADRA Swaziland has been running a “Building Hope for All” Training of Trainers for HIV/AIDS project since 2007. The phase-based project is funded by SIDA through ADRA Sweden and is now in its fifth phase. Project Manager, Ntombikayise Mdluli indicates that thus far, the project has capacitated thirty-six trainers who have trained 326 counsellors to serve in their various communities. The counsellors are tasked with starting community based support group for people living with and affected by HIV. Thereafter, they are responsible for providing health education, promoting adherence to ART, and promoting the disclosure of HIV status, among other services.
ADRA Swaziland encourages the established support groups to not only focus on HIV and AIDS issues but to regenerate themselves into community based organization that concern themselves with income generating activities. For their part, ADRA caters for the organization’s skills transfer when necessary (for example, provides a facilitator to teach them how to make candles and soap, if that is an organization’s chosen project); provide a basic Business Management Training course; and offer a start-up amount of between E 2, 000.00 to E 3, 000.00.
Lungile Shongwe, a counsellor based in Bulunga in the Emtfongwaneni Inkhundla, is part of a 28-member support group and has nothing but praise for ADRA’s work. She recalls that the Bulunga based support group was formed in 2008 and initial membership comprised of (and not by design) only women. But over the years, they have seen many men join. Amongst the many achievements of their support group, she points out that they have received seedlings and cultivated backyard gardens with which they have supported some of their poorer community members. Before government made antiretroviral treatment medicines available at all clinics, with the profits from their Savings Schemes, they supported their members with transport fees needed to go collect their medicines. Presently, they are also able to provide for their children’s basics school needs.
Shongwe further notes that her interaction with the ADRA project has also offered her numerous networking opportunities, as ADRA periodically uses her as a facilitator in other communities. She believes that the “Building Hope for All” project has positively impacted the community leaders, BoBabe Tikhulu (Chiefs) who are now in the know-how in matters relating to HIV and AIDS and therefore allow support groups to work smoothly.
Taking support groups a step further
For the current phase, ADRA is encouraging the support groups that are well established, to register their Savings Schemes with the Ministry of Commerce as cooperatives. As demanded by law, ADRA is currently facilitating the set-up of an umbrella cooperative that the support groups will subscribe under. This is being done in collaboration with the European Union funded “E-Lives” programme, in partnership with ADRA UK.
The development goal of any Savings and Credit Cooperative (SACCO) is to improve financial access and eradicate poverty for its members. It is common knowledge that a majority of people living in rural areas, face financial exclusion. The move by ADRA to encourage support groups to register as SACCOs will therefore show many PLHIV living in rural areas that their situation is not hopeless. They can combine economic resources to aid themselves and avoid the poverty trap.
The subsequent upgrade to SACCOs will provide even greater benefits for the HIV response in general since a number of HIV risks are fueled by economic challenges. ADRA is definitely building hope for all. Support groups have and will continue to have a very important role to play as the country works towards Vision 2022 – An AIDS-free Swaziland.