South Africa

Big Shoes (formerly CHOMP)

For most children living with HIV, great strides have been made through the introduction of anti-retroviral treatment. But for those children where treatment was accessed too late or isn’t working, paediatric palliative makes the difference between a life lived in pain and suffering and one marked by love and support, where the child’s physical, medical, psychosocial, spiritual and emotional needs are met.

The goal of Big Shoes is to help all orphaned and vulnerable children, including those living with HIV, grow up to fill the big shoes they dream about. Understanding the need for a holistic approach in this endeavour, Big Shoes provides a range of individual and family support services including HIV testing, adoption placements, access to HIV treatment, palliative care, spiritual support (of any denomination) and training. SLF funding supports the Paediatric Palliative Care programme through screening and referrals, medical and psychosocial counselling, assistance with age-appropriate HIV disclosure counselling for children and their families, child protection, some staff costs, and psychosocial support. Additional assistance goes to the children’s families for food parcels, transport money, advice on household management and nutrition, help to access birth certificates needed to access the government’s social grants.

Cotlands

Cotlands is probably our oldest partner organization, having started in 1936 as a centre for unwed mothers and their children. In the early 1990s, after years as a shelter for abused, abandoned and terminally ill children, Cotlands decided to devote all of its attention to children who are infected or directly affected by HIV/AIDS. This included the establishment of a paediatric AIDS hospice in 1996, the first of its kind in South Africa, as well as a variety of centre-based and community outreach programmes. Today, Cotlands provides support in six South African provinces. Because all projects are holistic in nature, each one includes medical, physical, psychosocial, educational and emotional care as well as anti-retroviral treatment (ART) programmes.

Amidst this panoply of support, Cotlands faces a huge challenge in coordinating support services for children living with HIV and their caregivers. No two sites they work in are the same; yet Cotlands is committed to maintaining a consistent level of quality care. SLF funding fills many crucial gaps by helping Cotlands underwrite a counselling initiative at Chris Hani Baragwanath Hospital in Soweto, Johannesburg. With SLF support, Cotlands also trains guardians to care for HIV positive children at home, provides home-based care to care-giving grandmothers, advocates for access to social grants and other government entitlements, and ensures that medicines are available and administered correctly for both TB and HIV. Some material support is also offered, for example infant formula and clothing, where families can’t afford to purchase their own.

dlalanathi

The legacy of two inspirational people combined to create dlalanathi — that of Rob Smetherham (whose name is still associated with the organization’s legal registration) and a nine-year-old boy who died of AIDS in the arms of loved ones. Dlalanathi provides — and more importantly, trains and empowers others to provide — bereavement service for children and their caregivers whose lives have been touched by death, through the use of therapeutic play, peer-support, and other emotionally healing interventions.

When providing direct support, dlalanathi runs various support groups to strengthen families affected by loss. They also work with children one-on-one and in small groups, focusing on youngsters who have been identified by schools or local community members as needing special support.

More broadly, dlalanathi works within a community development model to increase each community's own capacity to respond to the psychosocial needs of children and their families, rather than rely on experts from the outside. Thus, they only go to those communities that have invited them. Dlalanathi commits its resources to a specific geographic area for a period of two-and-a-half years, working with structures and people to develop and implement the specific play skills and competencies needed to provide an effective psychosocial response. SLF funding pays for a set number outreach, support, training and mentoring activities, as well as for staffing and administrative expenses.

Ekupholeni Mental Health Centre

Ekupholeni began in the early 1990s as a community-based mental health service. It serves three townships and surrounding informal settlements in Katorus, about 25 kilometres southeast of Johannesburg. This area has been ravaged by extreme poverty, crime, political violence and high rates of HIV. At Ekupholeni, individual and group counselling interface with three community mental health development programmes that focus on (1) HIV and Bereavement, (2) Gender-based Violence, and (3) Youth at Risk. Once individuals are psychologically stabilised, an Economic Empowerment Programme helps clients secure a sustainable livelihood, to the extent that they are able.

SLF funding supports the focus on HIV through individual and group services that address bereavement, HIV disclosure, positive living, coping skills and human rights. There are separate men’s and women’s groups, plus a grannies’ group and a “quiet group” for adults living with the last stages of AIDS. In addition, crosscutting activities and holiday programmes allow for healing-ceremonies, family get-togethers and retreats that include both the adult caregivers and their children. For the most destitute families, emergency food, school uniforms and material support are provided. The SLF also aims to build the capacity of local youth through Ekupholeni’s Kick Start Programme, as well as the capacity of Ekupholeni’s staff though training and administrative support.

Etafeni Day Care Centre Trust

In the Nyanga Township of the Western Cape, with its HIV infection rate of almost 30% and an unemployment rate more than twice that, Etafeni is an island of hope.  Its Centre has spawned a variety of successful community-based services that two other communities in South Africa are now trying to copy (with mentoring from Etafeni). One reason for the organization’s success is that Etafeni relies on previously unskilled and unemployed men and women from the community, first to build their multi-purpose day care centre, and then to staff it. This ensures local ownership and trust, and the Centre has been widely used since its inception by AIDS-affected and infected children as well as by their family members. 

All services are situated in, or radiate out from, the Centre. SLF funding supports an infant care programme, a pre-school and an after-school programme for HIV-affected children. Etafeni also offers an income-generating programme for 35 HIV-positive destitute mothers and granny caregivers, and a nutrition programme that gives beneficiaries at least one healthy meal a day, thanks to a demonstration garden that Etafeni cultivates on site. The organization conducts TB screening and HIV testing and runs a lay counselling programme, a youth lifeskills and peer-education programme and a home-based care programme. With SLF support, Etafeni is also able to employ an auxiliary social worker who helps families do the paperwork to qualify for government grants and other entitlements.

Grandmothers Against Poverty and AIDS (GAPA)

GAPA (Grandmothers Against AIDS and Poverty) began as a research project in 2001 by the Albertina and Walter Sisulu Institute of Ageing in Africa (University of Cape Town). The project ran a series of educational workshops and support groups for very poor grandmothers who were affected by HIV. After the project was over, the grandmothers decided to continue these activities, as they found them very helpful.

In 2008, GAPA dedicated a new building that provides a pre-school and an after-care programme for orphans attending school, where the grandmothers also meet and teach skills such as sewing and knitting to the children. GAPA also continues providing educational workshops and follow-up support on a variety of critical issues for the grandmothers themselves: for example, how to access social grants, business skills, vegetable gardening and nutrition, elder abuse and human rights, and HIV testing and care. SLF support provides support to those involved, including running expenses for the programme. More recently, a meeting between grandmothers and the Board revealed that many grandmothers were in dire need of support for their households, as they must also care for young children. The biggest needs involved basic furniture and equipment for cooking and cleaning. Two hundred households have benefited so far, most with a piece of furniture or equipment that they have identified as the most important.

Hillcrest AIDS Centre Trust

Hillcrest’s mission, quite simply, is to show unconditional love to everyone who is infected or affected by HIV/AIDS. To do this, Hillcrest works at the grassroots level and makes sure thatbeneficiaries and other community members genuinely participate in the decision-making process. Projects now include counselling and testing, home-based care, respite care, outpatient care, stress-reduction (for beneficiaries and staff), income generation through the making of crafts, and food security through horticulture.

SLF funding supports Hillcrest’s home-based care and respite care programmes. Hillcrest staff explains that, “With anti-retroviral treatment now being a reality, we can no longer just provide palliative care and allow patients to die unnecessarily. Each person deserves a fighting chance of recovery and the opportunity to lead a fulfilling life within the community.” Accordingly, SLF supports the training of new caregivers, as well as providing support to those caregivers already in the field. Funding also allows for 24-hour supervision in the Respite Unit, thus ensuring good accountability and quality care. Additional training is provided to beneficiaries and their family members to help them take ownership of their health, live positively, and properly adhere to their treatment and nutritional regimens.

The SLF also supports a Granny-care project at Hillcrest, based on the inspiration and ideas brought home by two Hillcrest participants at the SLF Grandmothers’ Gathering in Canada in 2006. To date, there are more than 502 grandmothers participating in 15 support groups. To improve their lives, Hillcrest provides them with training and material resources to help maintain the groups and improve their lives at home.

Keep a Child Alive South Africa

In KwaZulu-Natal, South Africa's most affected province, HIV prevalence exceeds 40%. Keep a Child Alive South Africa was formed in 2005 when access to HIV treatment was very limited in this province, especially for children. The organization purchased a building that was previously a nightclub and turned it into the Blue Roof Wellness Centre and Clinic. Taking a family centred approach that involves all members of a household, the organization works closely with the Department of Health to provide education and support for HIV prevention and care, counselling and treatment services.

SLF support helps Keep a Child Alive to maintain its home-based care and nutrition programmes. Home-based care focuses on treatment preparedness and adherence, and it provides palliative care to the very sick who are no longer able to visit the Clinic. As related issues arise — for example, the need for documentation to access government services — the home-based care workers offer one-on-one guidance and assistance. Keep a Child Alive also offers a free nutritious meal to all patients and their family members when they visit the Clinic. Because TB and cervical cancer are common co-infections with HIV, the Stephen Lewis Foundation is helping Keep a Child Alive to introduce on-site TB testing and treatment and on-site cervical cancer screening, and it is expanding its HIV Counselling and Testing outreach programme. To maintain these programmes, the SLF also pays the associated staffing and administrative costs.

Mamelani Projects

In South Africa, nearly 600 people die each day of HIV and AIDS-related causes. Within this context, Mamelani Projects provides community-based health education through participatory workshops that are tailored to low-income women, as well as through skills training and personal development programmes. They also run a Child and Youth Development Programme that addresses the social, emotional and health needs of children and youth whose circumstances place them at risk of abuse and exploitation. The SLF recently began working with Mamelani to run an extensive series of wellness workshops, targeted to people suffering from chronic illnesses, their caregivers and family members.  Workshops are held in Xhosa and English and consist of six weekly sessions plus a cooking demonstration on low-cost healthy nutrition and herbs. Participants are also trained in stress-management, self-care and positive living. Additional emphasis is placed on accessing and adhering to HIV-treatment programmes, and on obtaining government welfare benefits, where applicable. With the assistance of the SLF, Mamelani also focuses on Safe Infant Feeding, with particular attention on HIV prevention.

Millennium Home of Hope

With more people infected with HIV in South Africa than any other country in the world, many babies and young children are orphaned and abandoned without anyone who is able or willing to take are of them. In the Mpumalanga region, the Millennium Home of Hope responded by setting up a transitional home for these youngsters, while they recruit and train foster families who can provide a normal family setting in the long-term. Over the last ten years, Millennium Home of Hope has assisted over 160 abandoned babies — many of whom are HIV-positive — and it has successfully recruited and trained more than 125 foster parents.

The Stephen Lewis Foundation is helping to build the capacity of Millennium Home of Hope and support its mission to “give each child a family rather than leave a child in the hospital or in an institution”. Because the placement of children is a complicated and often lengthy process, the Home is still used as a temporary setting. Community facilitators and social work staff conduct outreach sessions and screen potential foster parents, run training workshops, and follow-up with monthly visits to the foster families where children from Millennium Home of Hope have been placed. Additional training and assistance is provided to child-headed households in the community, where foster-placements may not be possible or may not be in the children’s best interest.

Sophiatown Community Psychological Services (SCPS)

Sophiatown Community Psychological Services (formerly the Reginald Orsmond Counselling Service-ROCS) is located in a multiracial area of Johannesburg steeped in apartheid-era history. The organization’s goal is to increase psychosocial coping skills and resilience of individuals, families and communities living with and affected by HIV/AIDS in the communities it serves. The Stephen Lewis Foundation funds SCPS’s “Windows of Hope and Children of Families on the Move Programmes” that runs training and skills development courses to local carers in disadvantaged communities. The Programme also trains volunteer and professional caregivers in formal organizations.  

Its ‘Healing thru Training’ workshops help build capacity of those already caring for vulnerable people such as grandmothers, foster mothers and caregivers of orphans and vulnerable children. The training works particularly to empower caregivers with the skills to listen and respond to emotional and psychological needs of clients. The courses also enable caregivers to identify and invest in their own healing process as many are infected and affected by HIV/AIDS themselves. Another initiative that SLF supports is the Sophiatown Community Healing Programme, started in 2006 targeting disadvantaged communities with counselling, crisis management and group therapy. SCPS recruited two full-time community workers in 2008 to identify individuals and families in Sophiatown for counselling and group support. The programme includes arts-based therapy and skills development for female survivors of abuse, a support group for people living with HIV and AIDS in Westbury, a holiday programme for bereaved children and a psychosocial support programme for children infected with HIV and their caregivers. A unique aspect of the programme is its ability to respond to urgent needs; “The Suitcase Project” counsels refugee children in nearby camps and communities traumatized by violence perpetrated against foreign nationals in South Africa.

Tateni Home Care Nursing Services

Tateni is an Nguni word that expresses a mother’s encouragement and support for a child who is learning to crawl and is eager to take the first steps in life. The organization was founded in 1995 by a group of dedicated nurses and home health workers in Mamelodi who wanted to do more for their destitute and seriously ill patients, especially those suffering from TB and HIV/AIDS.  

With SLF assistance, Tateni currently supports about three hundred chronically and terminally ill patients who need assistance in their homes.  Each home care worker has between eight and twelve patients. The amount of support the patients receives depends on her or his health status. Active patients, some of whom are working, are visited monthly. The second category consists of patients who are often sick but not bedridden. On average, they are visited every two weeks, but this varies depending on the person’s needs. Finally, there are the bedridden patients who require assistance with all of their basic needs. These patients are visited three times a week or more and are helped with bathing, physical exercise, treatment adherence, food-preparation, referrals and counselling. To ensure that care continues in between visits, the home health worker trains family members to provide care and support on an ongoing basis. Where possible, patients come to a day-care programme every two weeks, where they can receive additional medical and emotional support. The SLF also assists the project with some administrative costs.

Treatment Action Campaign (TAC)

South Africa has the largest number of HIV-positive people in the world. Despite the high HIV prevalence, for many years political controversy stalled this country’s response to the AIDS pandemic, causing thousands to needlessly suffer and die.

TAC started in 1998 as a membership organization to advocate for the human rights of people living with HIV and AIDS. The organization has achieved a great deal, most notably by taking a lead role in ensuring that anti-retroviral treatment became free and accessible to all South Africans, and most recently, by working to get the country’s HIV and AIDS Strategic Plan endorsed and implemented by the government. 

TAC works in partnership with local community groups and its membership of 14,000 in three inter-related programmes: (1) Public education on HIV and TB prevention, care and treatment literacy; (2) Community health advocacy including campaigns to end violence against women and children; and (3) Policy, communications and research.  In order to identify practical solutions to health problems and promote quality-of-care, TAC directs much of its resources to six “model districts” — one in each of six provinces. Each province also holds an annual congress where issues get discussed and strategies are agreed-upon, and where the provincial leadership is elected. After the six provincial congresses take place, a similar process occurs at the national level.

The work at TAC is often very intense and complex. SLF support focuses on key facets of organizational strengthening and capacity building at both the provincial and national levels, with emphasis on good governance, accountability and improved management skills.

Umtha Welanga

Umtha Welanga means “dawn’s early light,” which is an apt name for this community-based organization near Cape Town that brings new hope to children whose parents have died or can’t care for them. Umtha Welanga started ten years ago when local childcare workers in Khayelitsha became concerned about the number of children from their township who ended up as street children in Cape Town. Instead of just complaining about the situation, however, they took action — simultaneously organizing a pilot foster-care project, a support group for people living with HIV, and various awareness-raising activities related to HIV care and prevention.

Over the years, the organization grew. SLF support currently helps Umtha Welanga conduct community outreach campaigns, offer counselling and home-based care to terminally ill patients, provide psychosocial support to orphaned and vulnerable children, and facilitate three support groups: one for people living with HIV, one for children, and one for foster parents. SLF assistance also pays for some administrative expenses, which allows Umtha Walenga workers to link beneficiaries with government services, monitor their intake of medications, teach them about positive living, and help them plan for the future. The organization also conducts recreational activities and periodic trips for children, which adds joy to their lives. Perhaps most critically, however, Umtha Welanga provides support to 67 children from child-headed households in their community.

Wide Horizon Hospice

Since its founding in 1985, Wide Horizon Hospice has understood that dying is more than a medical event. Their philosophy got tested to an extreme, however, when they started dealing with the social, economic, and emotional aspects of TB and HIV/AIDS, and the degree to which an entire community can be affected by the stigma and loss that these diseases ravage on the lives they touch.

Wide Horizon Hospice initially responded by opening an HIV outreach clinic in 1998 that now serves 800 active patients. It also provides outreach and support services to four disadvantaged areas near Port Elizabeth, including HIV prevention-education for factory employees, voluntary counselling and testing, support groups, treatment monitoring, home-based care, and a 24-hour nursing service. 

SLF support is primarily directed to grandmothers who care for patients and orphans, and to home-based care for people living with HIV and their family members. The funding allows Wide Horizons Hospice to provide food packets to especially needy families, as well as training on household management, hygiene and sanitation, infection control, and adult-child communication. Orphans whose grandmothers lack money for school clothes are given a school uniform including shoes and a jersey. The SLF also pays for some staffing and administrative expenses.


















 

• Project descriptions last updated April 2011