Transforming Ethiopia’s Burial Societies to Provide Voluntary Care

OCTOBER 2008 — Andarge Zemene coughs violently from tuberculosis and has lost so much weight from HIV that his frame is little more than a skeleton. The former factory worker could probably benefit from antiretrovirals, but they are too expensive. Still, he has some advantages. The people he lives with in a one-room home in Addis Ababa understand his needs, because the head of the family is also HIV-positive. He also receives home- and community-based care services supported by Family Health International through its partner, the Hiwot HIV/AIDS Prevention, Care and Support Organization (HAPCSO). During one typical visit, a caregiver brings Andarge flour and sugar, bathes him, cuts his hair, prepares food, and gives him sheets and a heavy blanket. Without help from the program, "I would have died immediately," Andarge says.

Since 2003, the home-based care program in Addis Ababa and 13 other major cities has reached 527,000 people like Andarge, including almost 19,000 orphans and other vulnerable children. HAPCSO staff and volunteers are helping Andarge and other HIV-positive Ethiopians such as Dejene Mohammed, whose wife, son, and daughter died of HIV. Dejene is visited by Sister Yewagnesh, a HAPCSO nurse who changes the dressing on his badly burned leg. She carefully removes dead skin and covers the wounds with sterile gauze. Another HAPCSO volunteer visits Asselefech Tadesse three times a week, bringing medicine, soap, cooking oil, and books for her young son.

The program is a compelling example of collaboration and coordination of donors (the Royal Netherlands Embassy and USAID), with a global implementing agency (FHI), a local implementing agency (HAPCSO), the local government (Addis Ababa Health Bureau and the Addis Ababa HIV/AIDS Prevention and Control Office), and Ethiopia's idirs (traditional burial societies), community institutions that had never before played a role in providing palliative care.

The volunteer caregivers central to this effort are members of the idirs, who traditionally help families only when a death occurs and during the mourning period. Most Ethiopians pay a monthly membership fee to belong, and idirs are formed around common characteristics, such as neighborhood, ethnic identity, workplace, or religious affiliation. In mid-2003, FHI invited 1,500 idir representatives to a one-day HIV sensitization workshop. From this group 20 idirs were selected to receive an intense, day-long training. They agreed on criteria for identifying caregivers and established home-based care organizing committees. Now more than 160 idirs are involved with this effort.

The success of the home-based care program has unexpectedly prompted a cultural change among participating idirs, which began to see that they need not wait until a member dies to offer help. Many—instead of reserving funds for a member's survivors—changed their bylaws to permit involvement in care and support activities for ill members. Francesca Stuer, FHI's country director for Ethiopia, says "This palliative care network is helping build the community's capacity to help individuals and families affected by AIDS and poverty." She adds that innovations such as this represent "the purpose of [FHI's] work, really, to help initiate change, the sense of being able to act."

Each patient typically receives a caregiver visit three times a week. Caregivers provide basic nursing care, offer psychosocial support, and facilitate referrals to other services in the community. They may also wash clothes, clean the house, prepare food—sometimes even giving clients food at their own expense. "When you go into a household…and you find there's nothing to eat, treatment is not enough," says Ephrem Fikre, a former HAPCSO's program coordinator. The program also supports income-generating activities for women and orphans and tries to provide some food.

HAPCSO has become a major stakeholder in HIV activities, helping to reshape the local health system—despite stigma that so pervasive that the word "HIV" is sometimes not said aloud. The stigma is evident in personal ways, too. Ephrem recalls a young woman whose husband died of AIDS. Believing she had HIV and fearing her neighbors' reaction, the woman isolated herself for six years. When HAPCSO caregivers gave her an HIV test in February 2004, the result was negative. "The stigma attached to HIV is so great that people hide themselves, not even talking to others," Ephrem says.

PHOTOS: (Top) Andarge Zemene, (bottom) Ephrem Fikre (FHI/Ethiopia).