Balasahyoha: Helping children affected by HIV/AIDS by empowering their families

This article first appeared in the printed version of the newspaper Global AIDSLink, published by Global Health Council in June 2008.

Ashwini, Jyothi and Mary live with their mother in the Indian state of Andhra Pradesh. They are 15, 12 and four years old, respectively. The women in their family have been sex workers for decades. Their mother, Sharada, became a sex worker, just like her mother and grandmother before her.

But one day a test revealed that Sharada was HIV-positive. As her status became known to others, she was asked to move out of her house. Clients stopped visiting and she lost income. Ashwini, Jyothi and Mary, also suffering from the loss of income and shelter, dropped out of school to help.

Fortunately, a new HIV/AIDS program in Andhra Pradesh that focuses on the family is helping Sharada and her daughters cope. Based on the premise that the quality of children's lives will be improved if their parent(s) remain healthy, productive and able to offer a stable home life, the program supports children made vulnerable by HIV by providing holistic services to families, not just the children themselves.

Balasahyoga, which means "active support to the child," represents one of the first comprehensive efforts to help families affected by HIV/AIDS in India. Moreover, it is addressing the epidemic's impact on a massive scale, with plans to support 30,000 HIV-affected households over five years. Still in its first year, Balasahyoga will gradually scale up efforts and will remain focused on the state of Andhra Pradesh.

Supporting the whole family

Balasahyoga's family-focused approach to caring for children affected by HIV is holistic, comprehensive and multisectoral. Interventions take into account several aspects of a child's well-being, linking a child, for example, to clinical care, including antiretroviral therapy (ART), and nutritional and educational support. It could also arrange income-generating activities and ART for a child's parents, or ensure that the family has a safe place to live. The goal is to help children by empowering their families to care for themselves.

Sharada and her daughters first came in contact with Balasahyoga through St. Paul's Trust, one of the location organizations that implement the program. Staff from St. Paul's had been in contact with the family while Sharada was still a sex worker, and had recommended that she be tested for HIV when she first fell ill. After her diagnosis, Sharada was assigned a home-based care team, led by a family case manager. Such teams are at the heart of the Balasahyoga approach. Composed of a family case manager, a doctor, nurse and counselor, the team makes regular home visits during which they address a family's medical and psychosocial needs, including education, shelter and protection, often by referring them to existing government programs.

After Sharada's eviction, her family case manager found her a place to live with relatives, where she and her daughters could stay for free. The case manager enrolled her in a district self-help group for women infected and affected by HIV. Through the group, Sharada obtained a $250 loan, which she used to start a small eatery serving breakfast and evening snacks, and which earns her around $1.50 per day. Her family case manager also ensured that she obtain financial benefits entitled to her by the government, including a widow's pension, a ration card providing monthly supplies of subsidized rice and cooking oil, and a one-time grant from the central government designed to benefit needy families.

It is important to emphasize that a large number of the services Sharada and her daughters obtained through Balasahyoga were already part of the existing government support schemes, many sponsored by the Ministry of Women and Child Welfare. Balasahyoga simply helped the family understand and link to the services they needed. Balasahyoga's work within systems already managed by communities helps to ensure that it is locally owned and sustainable.

With Sharada's ability to earn money restored and having a safe place to live, her daughters were able to return to school. Four-year-old Mary now attends a preschool where she receives nutritional support. Her older sisters, Ashwini and Jyothi, attend lifeskills sessions facilitated by the program. The sessions emphasize child participation and make the young women aware of gender issues that affect their lives. Sessions also have helped them understand concerns around HIV.

"The program has given me home and a fresh lease on life," Sharada says. "I am happy that my daughters are back in school and receiving a good education."

Besides offering an innovative, multifaceted approach to addressing HIV/AIDS underpinned by existing government services, the Balasahyoga program is carefully managed. This first year of implementation has been marked by a participatory approach to planning that has ensured programming alignment with local government priorities.

Andhra Pradesh: A careful selection

 Many reasons contributed to the selection of Andhra Pradesh as the first state to implement the Balasahyoga program. As the fifth largest state in India in area and population, it is also among India's five highest HIV prevalence states. Its history of community participation was believed to provide an excellent environment for interventions that improve the health of the poor, including a commitment to addressing HIV/AIDS as part of its overall health strategy. Andhra Pradesh is regarded as a national leader of the women's self-help group movement—the movement to which Balasahyoga linked in providing Sharada with the loan to start her small eatery.

Government participation at the state and national levels has ensured coordination among all implementing agencies and funders. For instance, the National AIDS Control Organization (NACO) helped select districts for early programming and ensured that different groups were not working separately on the same issues. Only the government, with its overall perspective on work being done in HIV/AIDS throughout the state, had the authority and knowledge to enforce such controls. This marked the first time national and state government had been involved in such a large-scale effort to prevent duplication of resources and ensure donor harmonization.

Local people participate in planning, which helps ensure programming that is both relevant and sustainable. Community advisory boards have been established at the district level, comprised of religious leaders, members of local government bodies, people living with HIV/AIDS, and older children. The advisory boards meet quarterly to identify and prioritize needs.

Other local people serve as volunteer community workers who support home-based care teams in making regular home visits to ascertain the well-being of children and family members served by the program. Currently 222 community workers take part.

"The uniqueness and strength of this program lies in its diversity, scale, community ownerships and range of partnerships," says Dr. Bitra George, country director for Family Health International (FHI), India. FHI is a Balasahyoga partner that provides technical support to St. Paul's Trust.

What next?

The Balasahyoga program will be funded for the next five years by the Children's Investment Fund Foundation and the Elton John AIDS Foundation, in partnership with NACO and the Andhra Pradesh State AIDS Control Organization. Funders manage a consortium of three partners, including Family Health International, the Clinton Foundation, and CARE who, in turn, oversee the efforts of 300 local organizations working throughout all of Andhra Pradesh's 11 districts.

The program is designed to gradually put more control of activities in the hands of government and community partners. After five years, the community should be able to continue providing benefits and interventions without external support.

Although Balasahyoga is still a new program, early evidence shows progress is being made. Since April 2007 when it began, Balasahyoga has enrolled 9,000 children in the Andhra Pradesh program. Nearly one-third of the children have been tested for HIV and, of these, about one-fourth tested positive. About one-third of those are now receiving antiretroviral therapy in addition to other services.

Many of the nearly 8,000 adults taking part in the program are caregivers. More than 7,200 were tested for HIV, and 81 percent tested positive. Eleven percent are now receiving antiretroviral therapy. Ensuring their survival will be critical for the children's well-being.

Sharada is just one example of many parents benefiting from the program, and through her, her daughters. Because of Balasahyoga, she has a new job, an income, shelter and medical care. Although she does not need to be on antiretroviral therapy because her CD4 count is stable, she knows if the need arises, medical professionals on her home-based-care team will see to it that she receives treatment. Ashwini, Jyothi and even Mary know how to help with their mother's illness, for example, ensuring that she goes to the ART center periodically to have her CD4 count checked. Through the support it provides, Balasahyoga has brought hope that their lives will follow a different path than their mother's and grandmother's. They are the first generation of women in their family to attend school. Perhaps a new tradition has been born.