Foundation for the Future: Meeting the Psychosocial Needs of Children Living with HIV in Africa: Technical Brief

An abbreviated version of the Equipping Parents and Health Providers to Address the Psychological and Social Challenges of Caring for Children Living with HIV in Africa report, this AIDSTAR-One technical brief documents practices in critical services related to the psychological and social well-being of perinatally-infected children in Africa. These practices include the identification, testing, and counseling of children so that they are linked to appropriate care as early as possible, as well as on-going support to help children and their families manage disclosure, stigma, grief, and bereavement processes.

According to the research included in this report, early identification of children living with HIV who are in need of clinical care and psychological and social support is of primary importance.

Several practices identified in the report proactively seek out children potentially living with HIV, including house-to-house testing and counseling, and the use of index clients (either adults/parents or children) to access other family members, especially children, who might have been exposed to HIV. As stated here, in addition to being highly acceptable, home-based testing and counseling facilitates greater openness and support within the family and potential reductions in stigma more broadly. Other approaches build the capacity of community-based resource persons, such as adult volunteers living with HIV, or institutions (e.g., faith-based groups) to screen for at-risk households and refer or accompany members of that household to a testing site. 

As stated here, ensuring that quality pre- and post-test counseling is accessible as part of HIV testing services is critical to identifying and linking children to clinical and psychosocial services as soon as possible. Parents and caregivers need manageable, consistent, and hopeful information from the outset that can help them take some initial steps/decisions for the child's well-being. For the child, pre- and post-test counseling must be tailored to the appropriate developmental stage, which requires skill in being able to correctly assess and adapt both the process and manner in which counseling is provided. For older, more mature children or adolescents, it is critical to engage with them directly. Many HIV testing and counseling programs have adopted standard protocols for children (dependent on age and/or developmental stage), including having time with both the child and the caregiver individually, as well as in a joint session. Creating time for joint counseling was highlighted as being a useful approach, allowing for the caregiver and child to hear and share information together with a trusted source, as well as providing an opportunity for the counselor to observe the interactions between caregiver and child.

Supporting the disclosure process to the child, regarding both the child's and parent's statuses, is an important priority for PSS programs. The timing and nature of disclosure is difficult to standardise and should, according to the authors, be tailored to the child's specific situation. One evolving approach is the shift away from a single disclosure event to a more iterative process of partial disclosure over time, where providers share developmentally appropriate information about HIV that matches children's illness experiences and development stage. Studies suggest that this continuous approach of sharing information and gradually building a child's understanding of his or her illness helps to reduce some of the emotional distress of full disclosure and reinforces adherence to medical treatment.

Children and families affected by HIV face both external stigma as well as internal or self-stigmatisation. Among the promising practices identified for addressing stigma are targeted interventions, such as in schools, peer outreach and mentoring resources, informal interactions between both HIV-negative and HIV-positive children, and consistent, positive messaging about living with HIV.

The report provides several recommendations to help programs prioritise areas for greater attention while maximising available resources to effectively support children living with HIV and their families.  These recommendations include building skills and understanding, creating channels and forums for peer support, and meeting caregiver needs. Some examples of ways to implement these recommendations include:

• Trainings and workshops (linked to clinic days) on HIV information, parenting, and communication skills
• One-on-one skill building (e.g., role-playing conversations on disclosure)
• Facilitated communication (e.g., conducting joint counseling sessions with child and caregiver)
• Family conferences to assist with disclosure and build support.
• Separate peer support groups for children and caregivers, including those that focus on grief and bereavement
• Outreach and role modeling by adults and youth living with HIV
• Counseling support for own disclosure, grief, and bereavement
• Support and referrals to meet basic needs, including linkages to income-generating activities.