Breaking Down Barriers to Tell: A Mixed Methods Study of Health Worker Involvement in Disclosing to Children That They Are Living with HIV in Rural South Africa

Abstract

Disclosing to a child that s/he is living with HIV is necessary to promote adherence to treatment and improve health outcomes. Facilitating disclosure between caregivers and children remains a challenge for health workers. Understanding how health workers are involved in and perceive the disclosure process is integral to engaging with such challenges. We held group discussions with and surveyed 73 physicians, nurses, and counselors across 16 randomly selected facilities in two rural South African health districts, exploring their experiences of supporting disclosure between caregivers and children. Ninety percent of those surveyed agreed that children should be informed of their HIV status. Differences between categories of health workers regarding training, involvement in the disclosure process, and perceived responsibility for disclosure support led to inconsistent disclosure practices within facilities. Disclosure-strengthening interventions must consider the composition of the health worker team and the role that each category of health worker performs in their local settings.

Communication of HIV diagnosis in proper time: scoping review

“…For instance, being prepared for the emotional demands, such as insecurity, sadness, clarifying the child's doubts (27,32,43,49,56,60,65,72,73) . For the professionals, the support can imply assuming the leadership in the communicative process because they have noticed that the main difficulty of the relatives/family is not knowing how to start the communication (74) .…”

“…South Africa/2018 (74) To describe the perceptions of the health workers about the pediatric announcement of HIV, explore communication practices; describe the health professionals' point of view about their role and responsibility in the process of communication.…”

Comunicação do diagnóstico de infecção pelo HIV: experiência de jovens

“…Mesmo que para os participantes deste estudo a comunicação do diagnóstico do HIV tenha ocorrido em um único momento, estudos com pais e profissionais da saúde apontam que ela deve ser realizada de forma processual [27][28][29][30][31][32] , com apoio de equipe multiprofissional e respeito ao tempo das crianças e adolescentes, conforme seus questionamentos 28,[33][34] . Além disso, é importante que o indivíduo conheça o diagnóstico o mais cedo possível, preferencialmente na infância nas situações de transmissão vertical.…”

“…Para auxiliar familiares e profissionais na compreensão das informações, podem-se utilizar vídeos, brinquedos, desenhos, livros, folhetos, analogias e até mesmo ferramentas de informática, como redes sociais e sites, entre outros 30,32,34,36,37 . Alguns familiares também comunicam seu próprio diagnóstico de HIV primeiro, para que os jovens percebam a importância do uso de ARV e que é possível viver com o vírus mantendo a qualidade de vida, projetos e planos de futuro 33 .…”

Post-training and mentorship experiences of KidzAlive-trained healthcare workers at primary healthcare facilities in KwaZulu-Natal, South Africa

“…13,15 Most adults believe that children cannot handle the 'bad' news of an HIVseropositive status. 15,18,19,20,21 In South Africa, disclosure to children is deterred by existing paternalism, whereby the PCGs of HIV-positive children usually control the communication between healthcare workers (HCWs) and children under their care, which limits the HIV content shared with children. 15 As a result, children living with HIV sometimes have limited power over what information, how, when and where they are disclosed to regarding their HIV status.…”