What Works for Women and Girls

Family Counseling and Basic HIV Information Could Provide Needed SupportThe needs of carers, mostly women, is often overlooked, but as UNAIDS recognizes, “thestrains on those caring for people living with HIV are enormous, and without adequateand reliable support the risk of ‘burnout’ is high” (UNAIDS, 2009c: NP). Both the physicaland psychological toll of being care providers is often overlooked by women and care andsupport programs alike. Many are isolated and receive little social support because of HIV/AIDS-related stigma and discrimination. Some experience gender-based violence (Apondi etal., 2007). Among women who are living with HIV themselves, how and when to disclose tochildren is challenging (Manchester, 2004). In one study in Uganda carried out between 2001and 2005, HIV-positive parents reported inconsistent advice from counselors on whether to,or when to, disclose to children, with no national or NGO guidelines or training for counselors.Yet HIV-positive children should know their serostatus prior to becoming sexuallyactive. Children’s perspectives on this topic are needed. Family counseling may be advantageous(Rwemisisi et al., 2008).Many women caregivers lack information about HIV-related illness, basic nursing care,and measures to protect themselves from HIV transmission (Hong et al., 2004). A 2003to 2004 study of 1,017 people living with HIV in Uganda found that 47% reported depressivesymptoms, with women, those over age 50 and those without income more likely to bedepressed. Screening for depression should be incorporated in HIV care (Kaharuza et al.,2006). A representative sample of 409 people living with HIV in Buenos Aires, Argentina,of whom 18% were women, found that only 21% of parents had received health service counselingon how to talk with children about their HIV-positive serostatus, but 77% felt that suchcounseling would be useful. 73% of the children were unaware of their parent’s serostatus(Ottenberger et al., 2008). A 2000 to 2001 study in Chennai, India with 141 HIV-positivewomen and 215 HIV-positive men at a large tertiary care community based center, YRG Care,which has provided care for over 10,000 people living with HIV, found that women were morelikely to be separated, widowed or abandoned, more likely to be unemployed and more likelyto have a substantially lower income than men. Women scored lower than men on all itemsmeasuring quality of life (such as worry about being able to take care of oneself, having negativefeelings) except being comfortable talking to family and friends about their HIV status.HIV-positive women still bear the majority of household caretaking responsibilities and sufferstigma and shame due to their serostatus. With access to ARV therapy, HIV-positive men andwomen are living longer, making quality of life an important concern (Solomon et al., 2008).Few Home-Based Care Programs Address the Specifi c Needs of WomenMany women cannot afford to visit a clinic or hospital for treatment. Most prefer to be caredfor and die in their own surroundings. Women are also concerned about leaving their childrenalone if they are hospitalized. Likewise, children are put in the position of having to watchtheir parents and elders grow increasingly sick and die, to intimately handle their bodies, towonder and worry whether they are “doing it right” or “doing enough,” while at the same time344 CHAPTER 12 CARE AND SUPPORT