Truth Deception and Coercion; Communication Strategies Used byCaregivers of Children with Perinatally Acquired HIV During the Pre-Disclosureand Post-Disclosure Period in Rural Communities in South Africa

摘要

Typically, children with perinatal HIV (PHIV) receive antiretroviral treatment(ART) for a long time prior to receiving disclosure. Communication with childrenabout HIV and treatment is critical for monitoring adherence and retention incare. However, there is a dearth of information on communication betweencaregivers and their children. This study examines what and how caregivers telltheir their children about their illness and medication in the pre-disclosureand post-disclosure period. A qualitative study using semi-structured one-on-oneinterviews and focus group discussions was conducted with caregivers recruitedvia purposive sampling from a rural sub-district in South Africa. The interviewswere analyzed using thematic analysis. The sample consisted of 38 caregivers, 24of whom were the children’s biological mothers, 20 had disclosed to the childrenand 18 had not done so. Caregivers who had disclosed had told their children thetruth and named the disease as HIV, but communication about HIV was infrequentand focused on pill taking. Those who had not disclosed had lied, deflectedillness-related information, and attributed the children’s ill health toco-morbid conditions. To enforce adherence, most caregivers used coercion andthreats of the grave consequences of non-adherence as a communication strategy.Those who had not disclosed used deception, deflecting, and coercion asstrategies for coping through the pre-disclosure period. There is a need forhealthcare workers to prepare, support, and empower caregivers to developappropriate responses to children’s questions and to understand the implicationsof deception on future full disclosure and children’s acceptance of their HIVstatus.