Orphans and Vulnerable Children
In some countries, three generations have been affected by HIV (Oladokun et al., 2010a). Even as incidence declines, there is a clear need to continue meeting the needs of children orphaned and made vulnerable due to HIV and AIDS.
"Nowadays there is a deadly disease called AIDS. This disease is only treated but not cured. Anyone can be infected -- male, female, young, old, rich, poor, educated, uneducated from any country or any religion" -- Girl in Zimbabwe between the ages of 10 to 12 (Campbell et al., 2010a: 980)Despite the clear need, "...few interventions for children have been formulated, resourced or implemented on a scale commensurate with the impact of the epidemic" (Richter, 2012: 38). Furthermore, "few evidence-based answers are available to a basic question such as 'What interventions are most effective in improving child well-being?'" (Chatterji et al., 2010: 130). Only 15% of families in 2007 caring for orphans received support (UN cited in Richter, 2010). Where governments have been lacking, faith-based and other community-based groups have provided services (Foster et al., 2012).
Female Orphans and Vulnerable Children Face Specific Risks
"Old problems, such as gender inequality, are exacerbated by HIV and AIDS, with a double jeopardy for young girls, who are more likely to be kept away from school, required to take over household care responsibilities, and diverted to support income-generation activities" (Heymann et al., 2012: 6).
Data from Rwanda and Zambia show that orphanhood, especially if it occurs closer to adolescence, results in earlier sexual initiation (Chatterji et al., 2005). Early sexual debut places girls at risk of HIV, other STIs, and unwanted pregnancies. Further, loss of a parent increases vulnerability to trafficking, child prostitution, and hazardous labor situations (Ayieko, 1998; HRW, 2003c), in addition to forced sex (Birdthistle et al., 2008). [See also Addressing Violence Against Women] These vulnerabilities enhance orphans' risk for acquiring HIV. A study in Zimbabwe found a greater number of female orphans ages 15 to 18 had higher incidence of HIV infections than their non-orphan peers (Gregson et al., 2005). "...The majority of orphans and children whose parents are HIV-positive or AIDS-unwell are in fact adolescents and have a great need for information and skills on sexual and reproductive health and development. These topics are frequently omitted from OVC programmes..." (Hallman, 2008: 36).
In Zimbabwe, in a sample of 6,791 students (not sex disaggregated, but including girls), of whom 35% had lost one or both parents, orphans, especially those who had lost both parents, were at increased risk of early sexual debut, having been forced to have sex, and less likely to have used condoms (Pascoe et al., 2010). Others have not found a universal correlation between female orphanhood and sexual risk: a study based on Demographic and Health Surveys and Multiple Indicator Cluster Surveys in 36 countries found that only in seven countries (Ethiopia, Ghana, Haiti, Malawi, Mozambique, Uganda and Zimbabwe) were orphaned girls significantly more likely to have had sex before age 15 (Akwara et al., 2010).
Girls Who Have Lost Their Mothers Are at Particularly High Risk
A review of households in Uganda between 1991 and 2008 found that children who lost their mothers had one year less of education; those who lost their fathers were significantly more likely to have married earlier (Seeley et al., 2010). Girls who have been orphaned by HIV/AIDS face an intersection of vulnerabilities: As children, they lack the legal rights (e.g., inheritance and property), maturity, and skills to care and provide for themselves. As girl children, they most often do not have equal access to household resources for schooling, nutrition, or health care. When a catastrophic event hits the family, girls are more often the ones who must leave school and take on a greater burden within the home.
A meta-analysis of 19,140 youth compared HIV seroprevalence among orphaned and non-orphaned youth and found that orphans were near two times as likely to be HIV-positive, with significantly greater HIV seroprevalence and greater sexual risk behavior among orphans (Operario et al., 2011). A study of 200 orphaned and non-orphaned girls ages 16 to 19 in Zimbabwe highlighted that maternal care and support is important for HIV prevention. Seven percent of girls in the study had lost only their mother while 20 percent had lost both parents. Female adolescent maternal orphans were found to have more than five times the odds of engaging in sexual activity with their current partner, more than fourteen times the odds of receiving basic needs from their current sexual partner, and nearly five times the odds of acquiring HIV as compared to study participants who had not lost their mothers. The study also found that maternal orphans were less likely to have been physically forced the first time they had sex. This could be because more maternal orphans were intentionally engaging in sexual activity for material benefits and may thus be less likely to have been forced to engage in sex for the first time (Kang et al., 2008). A pooled analysis from sub-Saharan Africa found that in countries with HIV prevalence greater than 5%, among female adolescents, maternal orphans and double orphans--though not paternal orphans--were at increased risk of having started sex (Robertson et al., 2010).
Many Families Caring for Orphans Are Struggling
Evidence compiled during the Joint Learning Initiative on Children suggests that policies, programs and funding should support family-centered services that address material needs, cognitive development and psychosocial support (Surkan et al., 2010). However, Richter et al. found that, "reforms in favor of family-oriented HIV interventions have been slow to emerge" (Richter et al., 2010a: 1). A study in Botswana using data from a 2002 sample of 1,033 working adults found that 37% provided orphan care. Nearly half of working households with orphan care responsibilities reported experiencing financial difficulties, lacking resources to provide basic needs such as food, shelter or transport. Only 42 social workers were responsible for the care of more than 100,000 orphans (Miller et al., 2006; Heymann et al., 2007b). A case control study done in 2007 in Uganda with 369 HIV-positive children (49% female) between ages 7 months to 15 years found that children cared for by grandparents were less likely than those cared for by biological parents to have their immunizations up to date and more likely to have poor nutritional status (Kintu, 2008).
"I love our goats... they can help us when we dont have money, and we sell them to get money for other things which can improve our lives" --Girl aged 12 who cares for sick family members (Skovdal et al., 2009: 592)A study of child-headed households in South Africa found that the households needed basic access to food, health and shelter and clothing (Mogotlane et al., 2010). A systematic review which included 25 studies found that sibling caregiving negatively impacts both the sibling caregivers and those cared for, unless adequate adult supervision is provided (Yanagisawa et al., 2010). However, orphans also provide care for their relatives and often express great pride in doing so (Skovdal, 2010; Abebe and Skovdal, 2010). In addition, many MSM, PWID and sex workers have children and these children and their families should not be neglected, but little research in this area has been conducted to date (Richter, 2010). [See also Prevention for Key Affected Populations and Safe Motherhood and Prevention of Vertical Transmission ]
Family-Based Programming is Preferable
The Joint Learning Initiative on Children and HIV/AIDS, which compiled over 50 systematic reviews by working groups of world OVC experts, contend that the definition of 'orphan' leads the international community to assume that these children are without family support. "The UN definition of an orphan, 'a child who has lost one or both parents,' distorts the global response to children affected by HIV and AIDS." Instead, "some 88% of children designated as orphans by international agencies actually have a surviving parent" (Irwin et al., 2009: 12 based on Belsey, 2008; Sherr, 2008). Studies found that most orphans had some family with which they could live (Meintjes et al., 2010; Csaky, 2009; Richter et al., 2009). Supporting family systems is therefore essential.
Community- and family-based care for orphans are often more cost effective than institutionalization. The cost per child per year for orphan care in institutions ranges from US$5,403 (with donated food) in Rwanda to US$1,350 in Eritrea and US$698 in Burundi. "For most African countries, this cost per child rules out institutions as the preferred options for scaling up orphan care" (Csaky, 2009 cited in IOM, 2011: 75). Foster care is a more economic option compared to orphanages (Santa-Ana-Tellez et al., 2011: 1424). A meta-analysis from 21 articles from 2000 to 2010 for low and middle-income countries found that estimated costs for foster care with minimum standards of care ranged from US$614 to US$1,921 per child per year (in US2010 dollars), but educational support for primary school ranged from $30 to $75 and health interventions to ensure child survival was estimated at $55 per child (Santa-Ana-Tellez et al., 2011). Given these high costs, little evidence of effective outcomes (Larson, 2010) and the psychological benefits of family based care, experts advise a multi-generational family-centered approach (Tomlinson, 2010).
Progress is Being Made on Education for OVC
A recent review found that the number and scope of existing studies on the educational outcomes of HIV/AIDS-affected children was limited (Li and Guo, 2012). However, progress is noted: among 14 of 16 sub-Saharan African countries with an HIV prevalence of two percent or more, the level of school attendance among children ages 10 to 14 who have been orphaned has increased to near parity with school attendance among children whose parents are both alive and who are living with one or both parents (UNICEF, 2010c). [See also Advancing Education]
There is Insufficient Attention in Programming for Psychological Care
"Parental death is recognized as one of the most stressful life events a child or adolescent can endure" (Hallman, 2008: 38). Interviews conducted in 2005 with orphans and vulnerable children, their parents and caregivers, students and teachers in communities heavily affected by HIV/AIDS in South Africa and Swaziland found that parental death is one of the major causes of disruption of children's lives (Poulsen, 2006). Programs should also strive to keep siblings together, where possible. A cross-sectional survey in rural China with 124 double AIDS orphans (42% were female) with an average age of 12.4 years and with at least one sibling (69 separated from siblings and 55 living with a sibling) concluded that separation from siblings is associated with trauma symptoms of AIDS orphans who had lost both parents and were placed in group care settings. The study found that the orphans separated from their siblings had significantly higher scores on anxiety, anger, dissociation and sexual distress as compared to than those living with their siblings (Gong et al., 2009). A recent Cochrane review, however, found no rigorous studies of interventions for improving the psychosocial well-being of children affected by HIV and AIDS (King et al., 2009 cited in Giannattasio et al., 2011; Engle, 2012). "Although a large number of small-scale programs are run by NGOs for young children, few have been evaluated" (Engle, 2012: 82).
Disclosure is also a difficult issue. Experts have noted that disclosure, though difficult, is important and can determine if a child and family can access support (Kanesathasan et al., 2011). Gradually building a childs understanding of HIV/AIDS is recommended. One study in Thailand found that when adults were silent on the issue of AIDS with children affected by HIV/AIDS, adults contributed to the poor psychosocial health of the children (Ishikawa et al., 2010).
More Effective Programming and Policies for OVC Are Needed
As of 2008, only 32 countries had a national plan of action with benefits for orphans (UNICEF et al., 2008). "Yet a substantial epidemic of HIV/AIDS in older survivors of mother-to-child transmission is emerging in Southern Africa [with] a failure to adequately address the clinical needs of HIV-infected older children and adolescents" (Ferrand et al., 2009: 2039). While many NGOs, faith-based groups, and community-based organizations are working at the grassroots level to meet the needs of children affected by HIV/AIDS, few specifically address the needs of female OVC. A recent review of 14,343 documents with 414 judged relevant and reviewed on OVC found strong evidence was found that institutional care of OVCs should be the last resort (Franco et al., 2009).
"Orphaned children are at greatest risk of a compromised future" (IOM, 2011: 74)Access to treatment is another programmatic gap for orphans living with HIV. A study in rural Uganda of 101 children living with HIV (56 girls and 45 boys), of whom 47 were orphans, highlighted the need to improve access to antiretrovirals for orphans. The study found that orphans were more likely to be at WHO clinical stage 4, suggesting that orphans are at a greater risk of progressing to AIDS than non-orphans and in need of timely treatment initiation (Ntanda et al., 2009). For children of parents living with HIV, theoretically adult treatment programs should also encourage HIV testing and counseling, followed by pediatric treatment, for children who test HIV-positive, but in practice, due to stigma, this is rarely done (Leeper et al., 2010). Yet even HIV-negative children are at increased risk of health problems if they live with sick parents at home (Kidman et al., 2010).
Recent guidelines by UNICEF on programming for vulnerable children that are HIV-sensitive are available, with some guidance on addressing the needs of girls (UNICEF, 2011a).
A number of policy gaps exist regarding OVC (Engle, 2008). A review of National Plans of Action (NPA) for OVC found that "there is a wide range in the developmental appropriateness of the plans within the 17 countries. The most common interventions are health and nutrition and birth registration. Slightly less than half of the plans have components that include childcare centres (8) or community-based centre programmes (7). Some NPAs incorporated concerns for psychosocial support for younger children (4), a holistic approach to the treatment of HIV-infected children (6) and incorporating young childrens concerns into home-based care (3). Only two programmes mentioned capacity building for working with young children and three plans had age categories in their monitoring and evaluation plans. Some NPAs included programmes for young children but did not include funding" (Engle, 2008: v).
Significantly, "WHO, UNAIDS and the international data sets are not gathered or coded by gender. This serious omission leads to ignorance by neglect--despite well established gender challenges in later life" (Sherr, 2008). Evaluations of OVC programs are just beginning. Chatterji et al. have noted that educational programs should target all out-of-school children, not only orphans. Adolescents ages 1319 in particular need encouragement and support to stay in school (Chatterji et al., 2005). Program implementers need to develop proven and sustainable interventions to help improve the individual material well-being of children--both orphans and children with chronically ill caregivers. Policies should also ensure that national maternal and child health (MCH) programs focus attention on orphans. In particular, the primary caregivers of these children, some of whom are very young (1524) or older (50+), need to be targeted by health promotion campaigns that typically reach mothers ages 2549.
Despite the importance of early childhood development, "there is virtually no research on early childhood development interventions designed specifically for OVC or for high prevalence HIV settings" (AIDSTAR-One, 2011: 1).
Some have suggested that it is important to look beyond survival oriented interventions for children affected by HIV to consider their rights, safety, access to health care, connections to family, and education and livelihoods by expanding PMTCT initiatives to include early childhood initiatives, but research needs to assess the value added of this synergy (Engle, 2012; Betancourt et al., 2010a).
Finally, there is debate between those advocating a focus on vulnerable children as a group, in order not to stigmatize those affected by HIV and those who argue that "with very limited resources in the developing world, it is difficult to know how we can reconcile the need to help this specific group of children with the need to avoid the stigma that may come with targeted interventions" (Cluver et al., 2012: 126). Although analysis of Demographic and Health Surveys and Multiple Indicator Cluster Surveys in 36 countries found that orphanhood and co-residence with a chronically ill or HIV-positive adult are not universally robust measures of child vulnerability as household wealth was a key factor (Akwara et al., 2010). Targeting those who live in poverty needs to be a central criterion as well (Adato, 2012).