As the AIDS epidemic unfolded, the extent of the mortality and morbidity burden emerged. By 2000, AIDS had killed an estimated 14.8 million adults and children and orphaned nearly 14 million children. With rates of new infections continuing to rise and effective treatment still remote, the wave of children orphaned by AIDS was projected in 2003 to climb to 20 million by 2010, including more than 18 million in sub-Saharan Africa. Even with reductions in new infections, the cumulative impact of AIDS would continue to increase the number of orphaned children for years to come (Fig. 1). Moreover, these numbers, based on children losing at least 1 parent to AIDS, did not necessarily include all of the 2.5 million children younger than 15 years of age estimated to be living with HIV or the millions of children made vulnerable because of chronically ill parents or the social and economic effects of living in high HIV prevalence communities, all of whom collectively comprise those affected by HIV/AIDS, known as orphans and vulnerable children (OVC).
Moved by compassion and concerns about the future of entire generations, the US Congress united to create the President's Emergency Plan for AIDS Relief (PEPFAR) in 2003. Ten percent of PEPFAR's budget was allocated toward programs for children affected by HIV/AIDS with a target to serve 5 million children a year by 2013.
The magnitude of its response—nearly $2 billion spent on programs for orphans and vulnerable children—has thrust PEPFAR into a critical international role as the largest donor responding to the needs of children affected by HIV/AIDS. PEPFAR records indicate that more than 4.1 million children in 30 countries were directly served through PEPFAR-funded programs in 2010 alone (Fig. 2), with many more benefiting indirectly from PEPFAR support of government and community responses. PEFPAR supplemented and expanded the spontaneous response of extended families, neighbors, and communities groups—religious, traditional, or newly formed—who were providing support to OVC and overwhelmed families.
The expansion of antiretroviral treatment may explain why the 2009 estimate of 16.6 million orphans due to AIDS was lower than previously projected. However, the enduring, cumulative impact of AIDS on an ever-growing number of children remains a significant global issue, necessitating an effective and sustained response. Whereas most HIV programs entail medical interventions, responding to the needs of vulnerable children requires a complex multisectoral programming response inclusive of public health and social sciences. In launching an international emergency response and transitioning it toward sustainable systems, PEPFAR has undergone a rapid learning curve, gathering lessons that continue to inform program responses today. These lessons include a growing understanding of the impact that HIV is having on households and children, the importance of outcome focused responses to those needs, the critical role of the family in achieving those desired outcomes, and the important role that communities, civil society, and governments play in creating a sustained response.
Drawing upon program reviews, evaluations, relevant research, and PEPFAR reporting data, this article describes the evolution of PEPFAR OVC programming based on a growing understanding of the impact of HIV on children and families and programmatic lessons learned. An overview of available evidence of the impact of OVC PEPFAR programming is followed by considerations for enhancing the effectiveness and sustainability of OVC services.
PEPFAR'S EVOLVING RESPONSE TO ORPHANED AND VULNERABLE CHILDREN
The sections below provide an overview of the challenges facing orphaned and vulnerable children and how PEPFAR worked to mitigate such challenges through both service provision and systems strengthening.
Caring for Orphaned and Vulnerable Children
Understanding the Needs
Children who lose one or both parents to HIV/AIDS experience the devastating impact of HIV, but so do children in homes where the caregiver has AIDS.1 All children in fostering households also face heightened vulnerabilities2 due to additional pressure on emotional, financial,3 and material resources. In areas with high HIV prevalence (>5%), and particularly in the hyperendemic settings of eastern and southern Africa, communities are so hard hit by HIV that all children are affected4 by increasing poverty, high demands on health and social service systems, and the concurrent loss through illness and death of key service providers such as teachers and nurses. Each of these factors multiplies the number of children affected by the disease.
The impact on affected children is diverse and generally cumulative. The loss of caregiver support and protection often leaves children vulnerable to malnutrition, illness, less timely access to services, neglect, abuse, and mistreatment.5-8 It may also cause children to fail to reach their developmental potential,9 and such effects and shocks may be chronic and constant.10 Particular vulnerability is recorded for girls whose mothers are absent or deceased.11 Some children are forced into harmful labor and sexual exploitation while others migrate to threatening environments, such as street dwellings and urban centers. These children are more likely to become ill—including females being twice as likely to become HIV infected during adolescence12,13—and have less access to health care than their peers in the general population.14 Children who have lost 1 parent to AIDS are more likely to lose both parents, with double bereavement and its effects15 over a short time span.16
Parental illness and death often result in deepening poverty,17 loss of household assets, and a declining capacity of households to provide for basic needs of children.18 Pressures on children to contribute to household subsistence and to assume the role of caregiver for siblings and ill parents often lead to withdrawal from school. The psychological impact of witnessing the progressive illness and death of their parents is compounded by stigma and rejection;19 this was particularly true early on, when HIV was not well understood,20 but seems to persist.21
PEPFAR began as an emergency response. Partners were faced with a rapid influx of funding, ambitious targets, tremendous need, and little guidance. It was evident that a holistic and comprehensive response was necessary to mitigate the multifaceted impact of HIV/AIDS on children. To promote quality programming and provide a framework for assessing and addressing the needs of children and households in the nascent OVC field, the 2006 PEPFAR OVC Guidance identified 6 fundamental domains of child well-being as follows: education, health, shelter and care, food and nutrition, psychosocial support, and protection from abuse and neglect. An additional area, economic strengthening, was recognized as a means of improving families' ability to provide for a child's needs. The delineation of these “6 + 1” domains emphasized the need for holistic and multisectoral care and was instrumental in encouraging implementing partners to provide more comprehensive programmatic responses to children's needs. To further endorse this approach, and in an attempt to improve program comprehensiveness, partners in some countries were also advised that 3 services should be provided to a child before they could be counted as having been served.
An unintended consequence of this holistic emphasis, coupled with pressures to reach more children with more support, was that some PEPFAR partners overextended themselves beyond their areas of expertise, trying to provide services addressing all domains of child well-being. The complexity of comprehensive evaluation was, at times, difficult and counting of children served may not have represented equality of provision across different settings. High targets also provided some motivation to offer the most affordable and feasible services rather than the most needed, and sometimes led to a hasty rollout of commodity-based responses. There were concerns that such an approach may have overlooked quality, sustainability, and impact in favor of rapid expansion.
To reorient programs toward assessing needs and focusing on desired outcomes for children, PEPFAR supported the development of the Child Status Index22 in 2006. The Child Status Index was designed as a case management tool to assist front-line responders to identify relative need. It elucidated desired outcomes in the different domains to assist programs to monitor progress toward those goals. In 2007, PEPFAR supported a complementary quality-improvement project that developed standards for service delivery and created the space for policy makers and implementing partners to build consensus on what constituted quality interventions for children affected by HIV/AIDS and on how to improve those interventions. Quality standards with a focus on equity and effectiveness are being used or developed in 13 countries.23
Another challenge that emerged within the context of OVC programming pertained to who should be served. Some partners singled out “AIDS orphans” for services, often in communities where other children were vulnerable due to chronically ill parents and extreme poverty, conflict, and/or parental illness and loss from sources other than AIDS. This level of targeting contributed to unintentional stigmatization, resentment, and psychosocial distress among beneficiaries. The mere term “AIDS orphan” may have inadvertently conveyed a stigmatizing label indicating (often erroneously) that the children themselves were HIV positive or had AIDS. In response, programs in areas of high prevalence were encouraged to introduce and expand community committees to identify the most vulnerable children and households. This approach allowed for a broader inclusion of vulnerable children and simultaneously captured children affected by HIV/AIDS because community members typically identified orphans and children with sick parents as highly vulnerable.24 Thus, coordinating responses with broader community entities became an effective means to identify the most vulnerable children in a manner that still maintained PEPFAR's mandated focus on HIV while empowering community members and lessening the risk of unintended marginalization of AIDS-affected children.
Early PEPFAR OVC programs tended to focus on the individual child, helping to ensure that each child received the support needed to thrive. However, 95% of children affected by HIV were cared for in families,25 often by grandparents.4,26,27 These families faced added expenses and hardships, including caregiver burnout in HIV-ill homes and fostering homes, which had a direct effect on the well-being of children.28 Mental health burdens29,30 and deteriorating physical health limited the capacity of HIV-ill mothers31 and fathers32 to provide consistent care. Given the importance of the quality of care and caregiver variables in child outcomes, and the family's unmatched effectiveness in providing for children,33 PEPFAR partners began to place greater emphasis on strengthening families,33 including strengthening household economic capacity, improving parenting skills, and referring families to other community services. As HIV treatment has become more accessible, programmatic efforts focused on caregivers, and families have become a more viable and sustainable option. This approach is in alignment with research that illustrates the powerful effect that caregiver-level interventions can have on improvements in child welfare.34-36
Supporting Community-Based Responses
PEPFAR's primary mode of response has been to work with community groups—religious, traditional, civil, existing or newly formed—to provide support to families caring for OVC. Although a number of international charitable organizations focused their resources on institutional care, PEPFAR maintained the position that residential care/orphanages should be viewed as a temporary and last resort for vulnerable children, due to the negative effects of such environments on child development.37,38 PEPFAR moved forward with the understanding that investing in community support systems to maintain any remaining family integrity and to keep children in households with caring adults was in the best interest of the child.
Although civil society organizations were an effective means of reaching children, many were informally organized and had limited program and financial management skills. The challenge was to balance the need to funnel resources locally with the need to ensure US Government funding accountability. One way this was addressed was by working through “prime partners,” generally international or large national nongovernmental organizations that had financial accountability and expertise for developing the capacity of local community groups.
PEPFAR built a network of thousands of community groups that directly serve their neighbors in need. In 2009, PEPFAR funded more than 500 prime partners with the capacity to handle nearly $320 million earmarked for OVC programming in 22 countries; these partners passed on training and funding to thousands of national and community organizations that directly served 3.6 million children and their families. A number of national nongovernmental organizations have since transitioned to direct US Government funding, in part as a result of capacity building by PEPFAR prime partners.39
Building community capacity is essential to accomplishing PEPFAR's phase 2 mandate to ensure a locally owned and sustainable response. Community groups can provide swift and critical support to children and families in need. Community volunteers remain at the heart of the response, often intervening in ways that formal systems cannot to ensure a child is cared for in a nurturing environment. Over the years, many thousands of volunteers—men, women, and youth—have worked for the protection and care of children through PEPFAR-funded projects. However, a lack of certified training, meager stipends, and unrealistic expectations often lead to burnout and high turnover among volunteers.
Recognizing that the response requires a sustainable workforce, PEPFAR and other partners have introduced a more systematic social service workforce strengthening strategy into their programming. In November 2010, PEPFAR hosted a 20-country conference focusing on strategies to strengthen the social welfare workforce in Africa. National social service policies, structures, and services are now being strengthened in the areas of training/education and social and child protection.
Building community capacity in South Africa:
Partnership With Government
Although community-level and family-level engagement have been central to the response, they do not replace governmental responsibility for sustainable provision of essential health, education, and protection services for vulnerable children. Alarmed by the epidemic's effects, national governments began establishing ministry-level responses8,41 to better coordinate the care services offered nationally through various government, nongovernment, and local humanitarian entities. By 2003, 17 of 32 countries with generalized epidemics in sub-Saharan Africa had a National Plan of Action to guide strategic decisions, planning, and resource allocation to protect the rights and meet the needs of vulnerable children.
PEPFAR funding and technical assistance helped further develop and implement these policy and action plans, decentralize child services to improve access, and establish service standards to maintain quality in program expansion. PEPFAR supported the social service workforce with workforce gap analyses, development of human resource policies and plans, pre-service and in-service training, and task shifting to appropriate levels.
PEPFAR has supported government responses by building expertise in ministries responsible for child welfare and social services in resource mobilization and allocation (such as streamlining social assistance cash grants in Namibia and decentralizing funds for vulnerable children in Tanzania), strategic planning and implementation (including a strategic framework for adoption), monitoring and evaluation, quality improvement, and service integration.
Building Côte d'Ivoire's Response to Vulnerable Children
Program evaluations have shown that PEPFAR, together with the governments, communities, and the partners it supports, is making a difference for the families and children it serves. A recent systematic review of 22 evaluations of PEPFAR-funded programs41 highlights the positive impact that programs have made in a variety of domains, including child outcomes pertaining to education, HIV prevention, nutrition, and health, and family-level services of economic strengthening and emotional support. The data also illustrate the interrelated impacts of programmatic efforts. For instance, economic strengthening activities not only increased household income but also improved nutritional levels, health status, and living conditions for affected children. Educational inputs such as school supplies were found to improve access to education while also enhancing a child's self-esteem and psychological outlook.41
Programmatic research also provides guidance on the best use of resources to meet the needs of OVC. For instance, recent studies from Tanzania and Uganda show that for schools with large numbers of OVC, providing block grants for school-wide projects such as buying desks or science equipment in exchange for no-cost attendance of selected students may be more cost-effective than paying individual bursaries, while also complementing government efforts to increase enrollment for all children.42,44 Data from several countries illustrate the positive impact on school enrollment and household economic status of cash transfer strategies for OVC and provide important lessons in targeting.43 PEPFAR-funded operations research has also contributed to an improved understanding of the epidemic's effects on children and improved methods for researching OVC programs.44,45
Population-level studies illustrating the impact of PEPFAR OVC programming are lacking,41 however, trends in such data in countries with high levels of PEPFAR investment offer some positive indication. In 2009, roughly one-fourth of PEPFAR OVC funding contributed to keeping children in school, especially primary school. Although these relationships are not definitive, Figure 3 illustrates the improved ratio of school attendance between orphans and nonorphans from 1999 to 2009 in 7 countries in sub-Saharan Africa with high HIV prevalence and correspondingly high PEPFAR OVC funding where initial deficits in school attendance among orphans have been reduced or overcome.
Because of the millions of children orphaned and otherwise affected by HIV/AIDS and the long-term individual and societal impact of the disease, it is imperative that the response be effective and sustainable. Drawing on programmatic achievements, evolving science, and lessons learned by PEPFAR's maturing OVC program, we present suggested priorities for increasing the effectiveness in addressing the needs of vulnerable children and their families in a sustainable and cost-effective manner.
Increasing the Effectiveness and Long-Term Impact of Programs
Increase Evidence-Based Programming
Given the magnitude of need, initial PEPFAR resources were invested more in service provision than in evaluation and research, leaving a notable gap in the evidence base.41,46,47 Evidence is essential for program effectiveness and responsible use of funds. PEPFAR's initial emphasis on rapid rollout resulted in less investment in rigorous program evaluation designs, often neglecting baselines or control groups necessary to show change and attribution. The recent review of PEPFAR evaluations43 found that only 8 of 22 evaluations of interventions for children and HIV used some form of before/after, case control, or postintervention comparison design, and none was population based.46 Others have used quasi-experimental designs with randomly assigned intervention and control sites.48 Although this is not unique to PEPFAR OVC programs,49 it is clear that funding earmarked for robust evaluations would strengthen the evidence base. PEPFAR has begun to rectify this through the development of standardized outcome indicators to be used for evaluation of PEFPAR programs and by support for multiple evaluations and targeted research as in a randomized control trial on adolescent OVC programming in South Africa in 2011. However, there remains a need for high-caliber evaluations to be an integral part of routine programs,45 including more rigorous program-level designs for assessing outcomes of child well-being as routine program practice. Similarly, there remains a need for better measures of cost-effectiveness to promote the best use of limited resources.50
The integration of evidence from the multiple sciences underlying the response to children and their families (eg, child development, health, psychology, nutrition, education, child protection, and economics) could also aid in increasing effectiveness. Multidisciplinary interaction to address child/family needs that are country-specific, context-specific, age-specific, and gender-specific requires a broad evidence-based and theory-based understanding working hand-in-hand with innovation. Multicountry studies comparing interdisciplinary interaction, including costing elements, would also help strengthen the evidence base for programming.
Expanding the types and analysis of outcome indicators, particularly related to key demographics and specific domains of vulnerability and well-being, would support more effective, targeted programming. A review from the Joint Learning Initiative on Children and AIDS33 reported that even high-quality studies often do not disaggregate or analyze by gender and at times are not powered to even carry out such analysis, thus limiting understanding of gender effects and potential pathways for prevention and provision.51,52 Research on orphans is similarly vague, often failing to differentiate maternal, paternal, and double orphans, leaving much unknown about the complexities of these circumstances that could influence outcomes and intervention efforts.53,55 Research on very young children, children living out of home care, and the most-difficult-to-reach children is also lacking.
Raising awareness of the growing evidence base in program design and policy development is essential for successful application of such lessons. PEPFAR has supported the development of the Web site OVCsupport.net, a useful instrument for managing and disseminating information. This site has been enhanced by the recent addition of a monthly newsletter, “What's New in Research?,” that will report on applied science about children and families affected by HIV/AIDS, policy research, tests of effectiveness, rigorous program evaluation, and cost analysis. The forthcoming revised PEPFAR OVC Guidance will be informed by research and thus help to encourage increased evidence-based practice.
Focus on Key Developmental Stages
The 2 most crucial stages in child development, and the times when certain aspects of brain development are most flexible,56 are in the very early years of childhood and during adolescence. Yet a recent review of the OVC portfolio recognized that inadequate attention was being given to very young children and to adolescents.55
With increasing evidence that early childhood interventions are effective in laying the foundation for long-term health, learning, and behavior,56,57 and given their relatively low cost and high returns,58 early childhood development is an important area of intervention. Although early childhood efforts are growing within PEFPAR programs, government partnerships are critical in ensuring that early childhood programs/centers function according to quality standards. Linkages with prevention of mother-to-child transmission programs would allow for earlier identification of vulnerable children, entry points for early childhood development interventions, and opportunities to link mothers and families with child-centered community care and support networks to better meet the holistic needs of HIV+ mothers and HIV-exposed children, while promoting early infant diagnosis and partner testing.
A key need among adolescent OVC is HIV prevention. A recent systematic review of 10 cross-sectional studies, conducted primarily in sub-Saharan Africa, examined the relationship between orphanhood and specific indicators of HIV risk. Results showed that orphaned youth had consistently higher levels of sexual risk behavior and nearly 2-fold greater odds of HIV infection compared with their nonorphaned peers.59 Thus, children affected by AIDS are a key link in the intergenerational cycle that perpetuates the epidemic. Mitigating risk requires robust, multisectoral and gender-sensitive prevention initiatives to address the elevated likelihood for HIV risk factors among OVC, such as transactional sex,13 financial hardship,4 and psychological distress.60 Links must be strengthened between OVC and HIV prevention programs targeting adolescents and youth, including programs to strengthen communication between parent and child, prevent teenage pregnancies, and provide skills for young women, and to reach those youth who are already living with HIV. Additionally, youths' transition to adulthood can be better supported by vocational training that considers student aptitudes and interests, along with market demand.
Supporting Sustainable Approaches
Families are the most effective and sustainable means of supporting child well-being.61 As such, sustained attention must be given to building the resiliency of HIV-impacted families and combating the impoverishing effects of AIDS: Encouraging evidence is mounting that demonstrates that economic strengthening activities such as micro-savings groups and other money management approaches are important investments to empower families to better care for children within their households and reduce their vulnerability. In Kenya and Tanzania, for example, microsavings led to reductions in food insecurity of 10% at a cost of only $1.61 per beneficiary per year.62 However, choosing the most efficient and effective means of addressing needs is a complex issue. Cost-effectiveness must always be a consideration, though studies indicating optimum methods are few. Figure 4 illustrates multiple pathways to reduce food insecurity and the relative cost of each. In 1 year, a 10% reduction in the probability of food insecurity could be achieved at widely varying costs; not calculated in these models are the sustainability and long-term costs and extended impact of each. There remains a need for greater investment in cost-effectiveness studies to fully understand the range and opportunities for how best to build the capacity of families for the sustained care of OVC.50,62
Psychosocial interventions are also an essential part of family strengthening, particularly those that promote improved family relationships and parenting and coping skills. A recent evaluation of PEPFAR-funded support groups for OVC caregivers in Kenya illustrated how such efforts can translate into positive effects on child well-being. Specifically, after controlling for other factors, children with caregivers in support groups exhibited fewer behavioral problems and higher rates of prosocial behavior and reported lower incidence of abuse from adults in their household compared to children without caregivers in support groups.35 Another study demonstrated that households in the savings and loans (Village Savings and Loans) groups significantly increased expenditures and assets over the control group, but children of caregivers who participated in the Village Savings and Loans group with parenting support discussions also experienced decreased harsh treatment and improved mental health.63
Balance Government and Civil Society Investments
Sustaining an effective response requires coordinated donor investments in support of both government systems and civil society, each with their comparative advantages and important roles. Quality government services should form the warp through which the weft of vibrant civil-society initiatives can be woven to ensure that resources reach vulnerable families and communities. Governments have political and legal authority and can potentially operate at scale, solve systemic problems, and provide infrastructure and essential services. Civil society has moral authority (especially among the most marginalized populations), can generally move quickly and flexibly, and is often able to address the unique problems of affected children and families. Coordination among partners and local groups can ensure that geographic and programmatic gaps are covered, though governments' role in coordinating these efforts may need to be strengthened.
Strengthen the Workforce
OVC programs have relied heavily on volunteers to address the needs of vulnerable households. In the short-term emergency scenario, such volunteers were the mainstay of many programs. However, many of these volunteers have suffered from burnout and have been stretched beyond their training and capacity, resulting in rapid turnover. PEPFAR evaluations have pointed to the need to examine the sustainability and desirability of such a large volunteer workforce and to supplement volunteer efforts with a higher skilled social service workforce. There is a need to build long-term infrastructure and develop training and compensation to enhance this workforce potential.41
PEPFAR's response to vulnerable children has led the field in scope and scale, providing critical services and support to millions of children and families facing the devastating impact of the epidemic. PEPFAR has strengthened the knowledge base for OVC programming, has established vast networks of skilled community-based responders, and is helping to build sustainable national systems of care. The future holds opportunity to make OVC care and support more effective, efficient, and sustainable with continued investments in more rigorous research, programmatic design that is sensitive to age and gender dynamics, and enhanced family-centered approaches.
The importance to future generations of a well-funded multidisciplinary international campaign for vulnerable children cannot be overstated. Failure to address conditions that limit a child's development seriously undermines a country's social and economic development.64 An adequate response to HIV/AIDS cannot neglect the impact of the epidemic on affected children nor effectively ameliorate deleterious effects of the disease without attention to children's needs. Even with declining HIV prevalence, the impact of HIV/AIDS on children, families, communities, economies, and societies will continue for decades to come. This must be matched with continued global investments for OVC programming that are both sustained and continually refined by experience and science. Given current challenges to donor resources and a changing world economy, this is a time to examine critically, to choose with care and compassion, and to move forward with strategic investments.
The authors would like to thank the following people for their review and input into the development of this article: Sarah Miller, MA; Suzanne Westman, MD, MPH; Nicole Behnam, PhD; Gretchen Bachman, MBA; Teri Wingate, MA; Linda Richter, PhD; and Tom Pullum, PhD.
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