In 2009, 2.5 million children under 15 years were living with HIV around the world, with the vast majority—2.3 million—in sub-Saharan Africa (U.N. Children’s Fund [UNICEF], Joint U.N. Programme on HIV/ AIDS [UNAIDS], and the World Health Organization [WHO] 2010). In that same year alone, an estimated 370,000 children were born with HIV. For most of the history of the epidemic, the majority of children born with HIV in resource poor settings did not survive past infancy, let alone early childhood ((Brahmbhatt et al. 2006; Sutcliffe et al. 2008). Now, however, recent studies indicate that 36 percent of infants living with HIV have a median life expectancy of 16 years (Ferrand et al. 2009). Furthermore, advances in HIV testing for exposed infants and children and in providing antiretroviral therapy (ART) are increasingly enabling children living with HIV to live longer and healthier lives. For these children, HIV is a chronic disease requiring a lifetime of continuous treatment, care, and support to ensure their physical and mental development, as well as their emotional and psychological well-being.

Psychosocial support (PSS) is an essential component of ongoing care for all people living with HIV. PSS is especially critical for children, creating the foundation from which they can establish their identity and place in society, manage their care and live positively, cope with challenges, and plan for their future (Regional Psychosocial Support Initiative [REPSSI] 2003; Rochat, Mitchell, and Richter 2008). PSS is the process of meeting a child’s emotional, mental, spiritual, and social needs through a variety of approaches, such as one-on-one counseling, support groups, and play therapy (Clay, Bond, and Nyblade 2003; Richter, Foster, and Sherr 2006; Rochat, Mitchell, and Richter 2008). PSS helps to build critical resiliency in children and supports families and caregivers to meet the multiple needs of children (REPSSI 2003). While some children may have acute emotional and mental health needs that require more sophisticated care, basic and ongoing support from those within the child’s sphere (e.g., family, relatives, friends, teachers, etc.) play an essential role in ensuring emotional development as the child matures. While all children can benefit from PSS, research has shown that it is particularly critical for the health and development of children living with HIV. Children living with HIV experience more subjective distress than their HIV-negative peers and face multiple stressors related to HIV, including the illness and death of a parent, disclosure, stigma, discrimination, isolation, loneliness, and family conflict or uncertainty. Several studies also suggest that the psychosocial well-being of children and their caregivers can improve adherence to ART and clinical outcomes. Given the importance of PSS to the long-term well-being of children living with HIV, there is a critical need to ensure that continuous and individualized psychological and social services are fully integrated within a broad, integrated framework of care provided by parents, caregivers, and service providers (facility-, community-, and home-based) and adapted over time as children develop and mature.

This technical brief describes promising practices in critical services related to the psychological and social well-being of perinatally-infected children (aged 0 to 12 years) in Africa. These include the identification, testing, and counseling of children so that they are linked to appropriate support as early as possible, as well as the provision of ongoing PSS to help children and their families manage disclosure, stigma, and grief and bereavement processes. The information presented in this brief was collected through a review of published and gray literature, as well as from interviews with researchers and practitioners addressing the clinical, psychological, and social needs of children around the world. In addition, the brief highlights experiences of eight programs in South Africa and Uganda. Field-based technical reviews of these programs included in-depth interviews and focus group discussions with program staff, parents and caregivers of children living with HIV, and HIV-positive adolescents (Uganda) and young adults (South Africa).

This brief is aimed at helping program planners, implementers, and service providers identify PSS activities and approaches for younger children living with HIV and their families that can be integrated into their treatment, care, and support efforts.