Promoting a Combination Approach to Paediatric HIV Psychosocial Support

Abstract

Ninety percent of the 3.4 million HIV-infected children live in sub-Saharan Africa. Their psychosocial well being is fundamental to establishing and maintaining successful treatment outcomes and overall quality of life. With the increased roll-out of antiretroviral treatment, HIV infection is shifting from a life-threatening to a chronic disease. However, even for paediatric patients enrolled in care and treatment, HIV can still be devastating due to the interaction of complex factors, particularly in the context of other household illness and overextended healthcare systems in sub-Saharan Africa. This article explores the negative effect of several interrelated HIV-specific factors on the psychosocial well being of HIV-infected children: disclosure, stigma and discrimination, and bereavement. However, drawing on clinical studies of resilience, it stresses the need to move beyond a focus on the individual as a full response to the needs of a sick child requires support for the individual child, caregiver-child dyads, extended families, communities, and institutions. This means providing early and progressive age appropriate interventions aimed at increasing the self-reliance and self-acceptance in children and their caregivers and promoting timely health-seeking behaviours. Critical barriers that cause poorer biomedical and psychosocial outcomes among children and caregiver must also be addressed as should the causes and consequences of stigma and associated gender and social norms. This article reviews interventions at different levels of the ecological model: individual-centred programs, family-centred interventions, programs that support or train healthcare providers, community interventions for HIV-infected children, and initiatives that improve the capacity of schools to provide more supportive environments for HIV-infected children. Although experience is increasing in approaches that address the psychosocial needs of vulnerable and HIV-infected children, there is still limited evidence demonstrating which interventions have positive effects on the well being of HIV-infected children. Interventions that improve the psychosocial well being of children living with HIV must be replicable in resource-limited settings, avoiding dependence on specialized staff for implementation. This paper advocates for combination approaches that strengthen the capacity of service providers, expand the availability of age appropriate and family-centred support and equip schools to be more protective and supportive of children living with HIV. The coordination of care with other community-based interventions is also needed to foster more supportive and less stigmatizing environments. To ensure effective, feasible, and scalable interventions, improving the evidence base to document improved outcomes and longer term impact as well as implementation of operational studies to document delivery approaches are needed.

Resourcing resilience: social protection for HIV prevention amongst children and adolescents in Eastern and Southern Africa

“…Social protection interventions consisting of multiple components have additive, and potentially multiplicative effects on HIV prevention (Cluver, Orkin, et al, 2016) and are necessary to meet the complex psychosocial needs of HIV-positive children and adolescents, as well as those vulnerable to infection (Amzel et al, 2013; Cluver, Toska, et al, 2016). The shift towards combinations from single forms of social protection has emerged from two complementary movements: increased evidence on the effectiveness of combined social protection interventions, and an adapted conceptualization of the compounded pathways to risk and vulnerability for HIV infection.…”

Quality of life among Ghanaian adolescents living with perinatally acquired HIV: a mixed methods study

“…Peer support groups have been shown to be beneficial in providing a forum for discussion of living with HIV in a stigma free environment (Amzel et al, 2013). Such groups can help adolescents better address the strong emotions around their illness, provide models and ideas for handling day-to-day challenges of disease management, and provide a forum to learn skills such as how to when, how, and to whom to disclose their illness.…”

Assessment of HIV antiretroviral therapy adherence by measuring drug concentrations in hair among children in rural Uganda

“…However, children often had no hair at the time of collection, and we learned caregivers shaved their children’s heads as often as monthly. Additionally, HIV-infected children and caregivers face significant stigma and discrimination (Amzel et al, 2013); alteration of head shaving practices could have led to fear of unintended HIV status disclosure or having the child viewed as ‘different.…”