Executive Summary

Chapter 1:
The Epidemiology of Loss

While societies have always had to find homes for children without parents, the sheer scale of the HIV/AIDS pandemic and the number of orphans being left in its wake appear to be unprecedented. Although data are incomplete and often difficult to compare, the best available estimates speak to an extraordinary human catastrophe.

• Since the beginning of the epidemic, according to UNAIDS, 50 million people have been infected with HIV, and 16.3 million adults and children have died.

• An estimated 32.4 million adults and 1.2 million children are currently infected with HIV around the world. Ninety-five percent of them live in the developing world.
  
  
• According to the U.S. Census Bureau, 15.6 million children in 23 countries hard hit by HIV/AIDS will have lost either their mothers or both parents to the disease by 2000. By the year 2010 that figure will climb to 22.9 million orphans. The AIDS epidemic is the primary source of this increase. The current UNAIDS estimate is somewhat lower - a cumulative worldwide total of 11.2 million AIDS orphans, defined as those having lost their mother before age 15 but still deeply troubling.
  
  
• AIDS has also already had a profound impact on life expectancy, infant mortality, economic development, and social stability in Africa, where the situation is the most desperate. In 19 African countries, AIDS has created more orphans than all other causes combined and is expected to account for 72 percent of all maternal and double orphans combined by 2010.
  
  
• Despite some gains in prevention in Thailand, the epidemic in south and southeast Asia continues to grow. An estimated 6 million adults and children in the region are HIV-infected.
  
  
• In the developed world, therapeutic advances, along with earlier diagnosis and intervention, have slowed the death rate. Nevertheless, the incidence of HIV infection continues at high rates among young gay men and African American and Latina women in the United States.
  
  
• Widespread economic and social instability in Central and Eastern Europe has contributed to a steep rise in the incidence of HIV, with infections doubling in the past two years.
  
  
• Most estimates on the number of orphans are based on mathematical models, incorporating different assumptions about the epidemic, current and future fertility, and infant mortality, thus making comparisons difficult.
  
  
• Two key distinctions in model-making are whether the criterion for inclusion is the death of the mother or father or both parents, and the age cutoff. in the developed world 18 is the usual age cutoff, while 15 is more commonly used in the developing world. Using younger ages may result in underestimating the impact on adolescents.
  
  
• Given the long incubation period between infection and death, long-term solutions are needed for orphans because the epidemic's impact will linger for decades even if the rate of new infections is brought under control.

Chapter 2:
The Erosion of Household Resources and Community Safety Nets

The HIV/AIDS epidemic cannot be fully understood without attention to its economic impact on the nation, the region, the village, and the household, at least in the developing world. The White Oak workshop focused on the structures in society that most directly affect children and families.

• Health problems lead fairly directly to lost productivity, lost wages, and medical expenses. Educational problems, food insecurity, and loss of housing may also result. At the time of parental death, additional financial pressures may ensue. Siblings may be divided between households and treated inequitably.
  
  
• The formidable array of household problems may be affected by their interplay with other background factors, such as the extent of the epidemic within a region and the attitudes and economic strength of the community.
  
  
• Loss management techniques in a household proceed through three stages, moving from reversible decisions, such as seeking wage labor or switching to lowmaintenance foods, to the disposal of productive assets, and ultimately to destitution.
  
  
• The availability of interrelated household and community safety nets is crucial to the well-being and quality of care available to orphans.
  
  
• Income-generating activities at the household level are intended to sustain family members, help to provide for the children and orphans m their care, and amass resources that make it easier to survive in an emergency. At the community level, the purpose is to create a sustainable source of funds for projects intended to benefit the public good.
  
  
• Microenterprise grants support self-employed individuals, often women, whose primary objective is to generate cash income through selling products and services. This is a relatively new economic development tool that has not yet been widely applied to situations involving HIV/AIDS.
  
  
• Microenterprises that improve poor families' access to credit and savings and that facilitate linkages to better markets or sources of raw materials are important ingredients for stabilizing household economies.
  
  
• Most economic assistance has come, and will continue to come, from family and community. The challenge for researchers, and for governmental, nongovernmental and donor agencies, is to find ways to support families and communities, not to substitute for them.

Chapter 3:
Children and HIV/AIDS from an International Human Rights Perspective

The protection and promotion of human rights is a crucial element of a global response to HIV/AIDS. While this concept has been increasingly accepted in terms of adults, the protection and promotion of the human rights of children in the context of the HIV/AIDS epidemic has not been fully addressed. A number of key principles should be understood:

• There is a tremendous gap between the rhetoric of human rights and the brutal reality of many children's lives.
  
  
• The inherent vulnerability of children, the vast scope of the epidemic, the cascading impact on the economies of households and communities, and the psychosocial consequences of all these inevitably place human rights at the center of all types of responses.
  
  
• Law alone cannot protect human rights, but these standards can be used to protect children in the context of HIV/AIDS.
  
  
• Human rights documents can be used by government officials to make policy, by observers to analyze a government's actions, and by individuals and groups as an advocacy tool.
  
  
• For governmental restrictions on human rights to be valid, five criteria must be met: the restrictions must be provided by law; there must be some legitimate state objective; the restrictions must be strictly necessary to meet the goal; the restrictions must be the least restrictive alternative; and the restrictions cannot be applied in an arbitrary or discriminatory way.
  
  
• The Convention on the Rights of the Child, which has been ratified by all but the United States and Somalia, has four general principles: nondiscrimination; best interests of the child; survival, life, and development; and participation.
  
  
• The fact that the United States has not ratified the Convention on the Rights of the Child may reflect views in Congress about the primacy of parental relationships and the limited role of government, as well as resistance to international standards in this area.
  
  
• National governments have three levels of obligation: to respect rights, to protect rights, and to fulfill rights.
  
  
• Children have human rights in relation to HIV/AIDS in three ways: as HIV-infected children, as children affected by a family or community member's HIV/AIDS status; and in their vulnerability to becoming infected.
  
  
• The actions and policies of governments in relation to HIV/AIDS can be measured by assessing their attention to children and young people.
  
  
• Human rights documents do not provide for the accountability of nongovernmental actors such as multinational corporations, which may have an economic interest in child labor, or extragovernmental organizations, which may use child soldiers.
  
  
• Customs that place children at risk of economic or social exploitation can be changed only with the cooperation of community leaders and advocates for children.
  
  
• A framework of human rights for children infected, affected or vulnerable to HIV/AIDS can become the standard for protecting the rights of all vulnerable children.

Chapter 4:
The Psychosocial Impact of Illness and Death on Children

Although a family member's death from AIDS may be a catalyst that propels children into escalating trouble, the psychosocial needs of children are too often perceived as somehow less important than their economic necessities. If children are to develop the resilience to deal with the challenges in their lives, their psychosocial needs must receive proper and prompt attention.

• The way in which a parent's illness and death are handled within the family are critical to a child's future.
  
  
• Many mental health issues transcend economic, political, and cultural boundaries as young people vulnerable to the vicissitudes of this disease in their parents become embroiled in a downward spiral of stigma, shame, secrecy, and losses.
  
  
• The psychosocial impact of losing a parent is no less significant on children and youth in developing countries than in the developed world. However, the pressing needs for basic survival and education have tended to dominate research and intervention agendas in the former setting.
  
  
• Existing psychosocial research has concentrated primarily on developed countries, and even that has been limited.
  
  
• In one Canadian study, families identified their main problems as meeting the needs of their children, living with uncertainty, dealing with the impact on family relationships, dealing with disclosure, and finding adequate social support.
  
  
• Custodial arrangements for children are rarely formalized. Even where parents have identified a potential guardian, they rarely make their plans legal and in many cases do not even discuss the plan with the potential guardian.
  
  
• One New York City-based study showed that 40 percent of the children (ages 8-12) whose mothers had late-stage AIDS had elevated symptoms of mental health problems, regardless of age or gender. High maternal distress, poor parent-child relationship, and stage of illness were associated with behavioral problems.
  
  
• Bringing children in crisis-oriented circumstances together to express themselves through art, writing, story-telling, role playing, and discussions helps create some sense of control over their problems. Specific cultural beliefs and attitudes towards spirituality should be respected in the design of effective interventions.
  
  
• Caregivers, community leaders, volunteers, and school personnel can all make contributions to a child's well-being by recognizing problems and involving young people in group activities.

Chapter 5:
HIV Prevention for Children and Youth

Because of their often precarious economic and social circumstances, orphaned children and youth are particularly vulnerable to HIV infection, as are all children from families affected by HIV/AIDS, either through their own risky behavior or as a result of sexual exploitation by adults. No studies or interventions to date have looked at this important aspect of HIV prevention. Although the context varies, youth in both developed and developing countries are at risk and there is a strong need to implement and evaluate effective prevention strategies.

• Around the world, health promotion campaigns have targeted youth to prevent the acquisition of sexually transmitted diseases and HIV infection but despite a vast and growing literature, there have been very few rigorous evaluations to determine what actually works.
  
  
• Most published health promotion research (71 percent) consists of descriptive studies.
  
  
• Evaluation studies make up less than one-third of the published research; and only 6 percent of these include both process and outcome evaluations.
  
  
• The vast majority of prevention research has been carried out in the United States; there is little published information on programs underway in developing countries.
  
  
• Most interventions targeted populations within formal educational and health care systems. Strategies are also needed to reach the most vulnerable youth, including girls, out-of-school youth, and those lacking a protective guardian or extended families.
  
  
• A "gold-standard" study has clearly stated aims; is randomized; includes a replicable intervention and evaluation design; has an adequate sample size; collects both pre-intervention and post-intervention data; factors in attrition and measures outcome in terms of impact. At a minimum, a sound study should include baseline equivalence, pre- and postintervention data, and the impact for all outcomes.
  
  
• Based on practical experiences, the most effective HIV prevention strategies are guided by social learning theory; involve young people in their development; draw on a variety of instructional strategies; integrate STD and pregnancy prevention messages and service delivery; and recognize the influence of social norms and the media.
  
  
• Prevention strategies in Thailand, which appear to be working, include condom distribution, targeting sex workers and the military, and education in the schools and the community. Reducing migration by creating job opportunities, adding supportive services, and bolstering the role of families have also been emphasized.
  
  
• Uganda also has an aggressive prevention campaign, framed around the slogan "faithfulness, abstinence, and condoms." The campaign includes condom distribution, voluntary HIV testing, counseling and support services, and frank public debate.
  
  
• Any prevention model that is developed must reflect local conditions and resources and must mobilize adequate community support.

Chapter 6:
A Research and Action Agenda for the Future

A research agenda should be action-oriented, focusing on key areas that can guide and refine program development and implementation. Furthermore, the field experience of workers is a major resource that should be documented. In order to be of value, any research agenda should recognize several other assumptions: (1) the way in which a problem is defined determines the solution; (2) research must be carried out in the context of human rights; and (3) research must recognize the dynamic nature of the epidemic.

Within that framework, the following areas have significant data gaps that require additional research and consensus:

• Definitions: In order to develop effective and nondiscriminatory interventions, allocate resources equitably, and minimize subjectivity in research, agreed-upon definitions are needed. Two important examples are definitions of "orphan" and the maximum age of orphan designation. An international working group could be convened to deliberate on the elements of consensus and to identify disparities.
  
  
• Orphan Incidence and Prevalence: It is difficult to determine the existing number of orphans, or to make future projections, because of problems of both underenumeration and overenumeration. Improved enumeration methodologies can arm policy Planners to be more proactive in developing appropriate community-based responses to anticipated needs. Knowing the age at which orphanhood occurs is also crucial to planning. Incidence studies of orphans over time are needed to assess the impact on children more fully and to provide insight into migration patterns.
  
  
• Psychosocial consequences: The psychosocial implications of orphanhood and the utility of such mitigating practices as youth counseling and should community education, s be examined. it will also be important to understand the impact on all children of growing up in an environment where so many adults and children are ill and dying.
  
  Outcomes research is needed to measure how children are faring, based on a range of criteria-including school performance, physical and mental health, percentage of orphans who become HIV-infected, and the percentage who become sex workers and street youth. Measures of bereavement, loss, and the impact of stigma will also provide a fuller picture of surviving children.
  
  
• Caregiving: There is an urgent need to understand the circumstances of those who care for children who have been orphaned by HIV/AlDs, to document the f availability and limitations o financial and material support to caregivers, and to understand the nature and extent of caregiver burnout and the need for emotional support.
  
  Research is also needed to analyze the cultural, ethnic, and socioeconomic variations in families affected by HIV/AIDS and to identify the strength of family support systems, communications networks, and patterns of closeness and partnerships.
  
  Longitudinal studies are needed to determine the capacity to sustain caregiving arrangements.
  
  
• Sibling Dispersal: Despite a consensus that surviving children should remain together after a parent's death, orphaned siblings are very commonly separated, often with resulting emotional problems. The nature of this suffering, in both the short term and long term, should be better understood.
  
  Research into the appropriate role that siblings can play in the economic and emotional support of their families, and the informal education of younger siblings, is a related area of exploration. Research should focus on the appropriate balance between recognizing children's value in the household economy and protecting them from exploitation.
  
  
• Prevention: There have been few studies to date of sexual activity of orphans and the prevalence of sexually transmitted diseases and HIV, compared to other children. There is a particularly large gap in understanding the sexual behavior of out-of-school youth, although all indicators suggest that this is a population with more psychosocial risk factors and greater risk of HIV infection.
  
  Understanding whether, and for how long, knowledge translates into behavioral change is crucial for the effective use of scarce prevention resources.
  
  
• Evaluation: If best practices are to be identified and replicated, effective assessment is crucial. Unfortunately, efforts to monitor and evaluate interventions are too often non-existent and where they do exist are invariably inconsistent in design. An important part of any evaluation should be the costs of developing, implementing, and replicating a program. The institutional role of different organizations - such as church groups, government institutions, school bodies, and nongovernmental organizations also needs to be appraised honestly. Without such information it will be difficult to obtain a commitment to take effective programs to scale.
  
  
• Research in the Developed World. In addition to the research described above, knowledge in the developed world is particularly weak in several other areas. These include the economic impact of HIV/AIDS on children and families once the parent has died, or in communities where the disease is entrenched; the impact on school attendance and performance; and the extent to which orphaned adolescents enter the criminal justice system.

In summary, what is ultimately needed is a global strategy that embraces specific local responses, that recognizes interconnections but facilitates local ingenuity and strengthens communities and families to provide environments in which children are protected, nurtured, and given opportunities to thrive. This begins with greater information sharing across national boundaries, encouraging research collaborations and bringing greater visibility to children's issues. Other appropriate intervention strategies:

• Strengthen the capacity of families to cope with their problems.
  
  
• Stimulate and strengthen community-based resources.
  
  
• Ensure that governments protect the most vulnerable children and provide essential services.
  
  
• Build the capacities of children to support themselves.
  
  
• Create an enabling environment for affected children and families.
  
  
• Monitor the impact of HIV/AIDS on children and families.