Date Published: January 15, 2019
Publisher: Public Library of Science
Author(s): Fatch Welcome Kalembo, Garth E. Kendall, Mohammed Ali, Angela F. Chimwaza, Sarah L. Pett.
The World Health Organisation (WHO) recommends that children living with HIV should be informed about their HIV status within the ages of 6 to 12 years using age-appropriate resources. The aim of this study was to assess the socio-demographic, clinical and psychosocial factors associated with primary caregivers’ decisions to disclose HIV to children living with HIV aged 6 to 12 years in Malawi. A cross-sectional study of 429 primary caregivers of children living with HIV were systematically recruited from all regions of the country. Information on HIV disclosure, family and child socio-demographic characteristics, child clinical characteristics, and child and family psychosocial characteristics was collected using validated instruments. Logistic regression was used to analyse data. The prevalence of non-disclosure of HIV status to children was 64 per cent. Concerns about the child’s inability to cope with the news (29%), a lack of knowledge on how to disclose HIV status (19%), and fear of stigma and discrimination (17%) were the main reasons for non-disclosure. On multivariate analysis, the odds of non-disclosure were higher among primary caregivers who were farmers (aOR 3.0; 95% CI: 1.1–8.4), in younger children (6–8 years) (aOR 4.1; 95% CI: 2.3–7.4), in children who were in WHO HIV clinical stage one (aOR 3.8; 95% CI: 1.4–10.2), and in children who were not asking why they were taking ARVs (aOR 2.9; 95% CI: 1.8–4.8). On the other hand, nondisclosure of HIV status was less likely in underweight children (aOR 0.6; 95% CI: 0.3–0.9). Many children living with HIV in Malawi are unaware of their HIV status. Non-disclosure is associated with a number of clinical and demographic characteristics. The findings highlight the need to provide guidance and support to primary caregivers to help them to effectively disclose HIV status to their children.
In 2015, the United Nations programme for HIV/AIDS (UNAIDS) estimated that one million people of all age groups, 6.7 per cent of the total population, were living with HIV in Malawi . The preliminary results of the first national representative survey to measure the prevalence of HIV among children reported that 1.6 percent of children under the age of 15 years (84,000) were living with the virus in Malawi in 2016 . This estimate is unlikely to be accurate due to the low survey response rate of 61.7% . While the exact proportion of children living with HIV in Malawi has not yet been established, it is clear that HIV/AIDS has a significant impact. For example, in the same year, it was estimated that 530,000 children living in Malawi were orphaned due to the HIV-related death of both parents . The magnitude of these numbers underscores the huge burden that HIV places on families and healthcare resources in Malawi.
In this study, the prevalence of non-disclosure among six to 12-year-old Malawian children living with HIV was 64%. The main reasons for non-disclosure were concerns about the child’s ability to cope with the news about his/her HIV status, lack of knowledge on disclosure, and fear of stigma and discrimination. Primary caregivers who were engaged in farming, resident in Northern Malawi, or living with two or fewer children older than 12 years had a higher likelihood of non-disclosure. In addition, non-disclosure of HIV status was more likely for children who were younger, in stage one of the WHO HIV clinical stage, and those who were not asking why they were taking ARVs. On the other hand, non-disclosure was less likely in children who were underweight. Child/family psychosocial factors, family wealth and parents’ level of education were not associated with non-disclosure.
The prevalence of non-disclosure in Malawi is high. It is clear that primary caregivers in all socioeconomic and demographic groups struggle with the task. There are many reasons why caregivers choose not to disclose, especially to younger children. The results of this study indicate that providing age appropriate disclosure is a complex process for primary caregivers. There is some evidence from previous studies that healthcare workers can make this task easier for primary caregivers by providing appropriate guidance and support [73, 74]. We believe there is great potential for interventions to be developed to support both primary caregivers and healthcare workers in the disclosure process. Future research is warranted, including both longitudinal studies to better understand the disclosure process that takes place over time and intervention studies that begin by asking primary caregivers and healthcare workers to identify the kinds of resources they require to help them effectively disclose.