Expanded IMPACT Program in Zimbabwe Lea Toto and APHIAplus Nuru ya Bonde programs in Kenya Yekokeb Berhan Program for Highly Vulnerable Children in Ethiopia

Publication Date

"In spite of the dramatic success of HIV treatment programs around the world, children remain under-represented in HIV testing numbers, and are thus denied access to lifesaving treatment."

This report, based on research conducted by the Coordinating Comprehensive Care for Children (4Children) project, offers a set of case studies to promote learning from orphaned and vulnerable children (OVC) programmes that have successfully designed interventions and approaches to increase HIV testing and services (HTS) for children.  The report summarises the strengths, challenges, and lessons learned from four programmes implemented in Kenya, Ethiopia, and Zimbabwe. Specifically, this report documents each programme’s efforts to a) test 100% of HIV-exposed infants, children and adolescents, and promptly treat those with vertically acquired infection, and b) identify all children ages newborn to 17 years with acquired HIV infection, and link them promptly to care and treatment. This report is intended for programme designers, managers, and practitioners, with the aim of helping them to better understand how OVC programmes can be designed to effectively address existing barriers, and enable vulnerable children to access the HTS they need. It also highlights several gaps and challenges that require urgent, collective action. It is hoped that the information highlighted inspires new evidence and increasing innovation in the way that OVC programming can effectively meet the unique needs of children living with HIV, and contribute to the global effort of reaching 90-90-90.

The four programmes discussed are: Children of God Relief Institute (COGRI)’s Lea Toto programme and the FHI360-led APHIAplus programme in Kenya; the World Education Inc./Bantwana Expanded IMPACT Program (EIP) in Zimbabwe; and Pact’s Yekokeb Berhan programme for highly vulnerable children in Ethiopia.

As stated in the report, “[L]ike adults with HIV, children and adolescents living with HIV face a multitude of practical barriers in achieving viral suppression, but they are perhaps even more constrained as they are subject not only to the wide range of household-level, developmental and societal barriers, but also by their reliance on caregivers.”  In addition, to ensure children receive the HIV testing and services they need to live a healthy life, requires an ““all-hands-on-deck” approach to building awareness about - and facilitating access to — HIV testing of children, helping parents and caregivers overcome fears and resistance to child testing, assisting with age-appropriate disclosure and information-sharing, and supporting access to appropriate treatment. Balanced, inclusive and ethical approaches that mitigate the potential for harm, stigma and discrimination of children and families affected by HIV, AIDS and other adversities are critical.”

Through field visits to the three countries, as well as through a review of relevant literature, 4Children identified and prioritised a range of barriers to the uptake of HIV testing and effective linkage to treatment, which are outlined in the report. These barriers include the fact that HIV among children is poorly understood, and that children living with HIV are especially vulnerable to stigma and discrimination. In addition, over-reliance on clinical providers, exclusion of community-based workers from health-related “confidential” information, and structural barriers between the health and social welfare sectors impede early identification of HIV infection and the delivery of holistic care for children and their families. Lack of clarity about optimal timing and process also pose barriers to disclosure of HIV status to children and result in low rates of disclosure, particularly in resource-limited settings. Finally, distance to testing and treatment services for children also continues to be a barrier.

The report identifies some of the strengths and successes in addressing these barriers, across the four programmes. It describes how all four programmes developed strategies to bridge divides between the health and social welfare sectors and address the challenges of siloed service provision. It also looks at how each programme increased collaboration between community volunteers and health professionals, and helped them work together in a team, as well as how the programmes supported government leadership and built on existing structures, which helped to lend credibility and promote sustainability.

In addition to the shared successes across programmes, the report also highlights some of the common gaps and challenges that occurred across the different contexts. These included:

  • Lack of guidance to support optimal disclosure to children - There is an urgent need for evidence-based guidance around the process and timing of disclosure to children, including indicators of child readiness and age-appropriate techniques and language.
  • Lack of evidence on effective approaches to support children and adolescents with HIV - Evidence around the effectiveness of the various support group formats and methodologies for children and adolescents is needed to underpin clear guidance, tools and training materials, and a secure resource stream. While youth activists for HIV prevention have been very influential in the past two decades, youth leadership and mentorship of child-focused support groups have not gained real traction. Retreats, workshops, camps, regular self-help meetings, mentorship, helplines and other formats have been implemented, but have yet to generate evidence of their success in achieving treatment adherence, psychosocial health or successful transition to adult life.
  • Lack of evidence of effective approaches to support caregivers of children living with HIV- Little is known of the effect of specific OVC interventions aimed at building the capacity of caregivers of children and adolescents living with HIV.
  • Stigma is still a major barrier - Stigma remains a threat to information-sharing and care-seeking. In many cases, caregivers fear that if their child tests positive, the child will suffer stigma and not be able to cope. In other cases, parents may be afraid to discover their own HIV status, or fear that they will be forced to share their own status with a partner if the child tests positive.

Based on the findings, the report outlines a number of considerations for OVC programming. They include, but are not limited to:

  • Reduce stigma and build compassion for children with HIV - it is vital to continue to build HIV-competent communities that protect children through building awareness of threats that increase HIV vulnerability, increased male involvement in parenting and child health, and improved social support to HIV-positive children and their families. Efforts to reduce misinformation and reduce stigma and discrimination for PLHIV should include a particular focus on children living with HIV.
  • Develop evidence-based approaches to address HIV disclosure, positive living and treatment adherence among children and adolescents - Age-appropriate support group guidelines, curricula and leadership training suitable for children living with HIV are essential for future OVC programming to ensure that programme volunteers are able to offer ongoing services and support to children and adolescents identified through HTS activities.

Catholic Relief Services website on September 28 2017.