Understanding the role of age in HIV disclosure rates and patterns for HIV-infected children in southwestern Uganda

Abstract

Highly active antiretroviral therapy has enabled HIV-infected children to survive into adolescence and adulthood, creating need for their own HIV diagnosis disclosure. Disclosure has numerous social and medical benefits for the child and family; however, disclosure rates tend to be low, especially in developing countries, and further understanding of the barriers is needed. This study describes the patterns and correlates of disclosure among HIV-infected children in southwestern Uganda. A cross-sectional study was conducted in a referral hospital pediatric HIV clinic between February and April 2012. Interviews were administered to caregivers of HIV-infected children aged 5-17 years. Data collected included socio-demographic characteristics of the child and caregiver, reported disclosure status, and caregivers' reasons for full disclosure or non-full disclosure of HIV status to their children. Bivariate and multivariate analysis was done to establish the socio-demographic correlates of disclosure. Caregivers provided data for 307 children; the median age was eight years (interquartile range [IQR] 7-11) and 52% were males. Ninety-five (31%) children had received full disclosure (48% of whom were >12 years), 22 children (7%) had received partial disclosure, 39 (13%) misinformation, and 151 (49%) no disclosure. Full disclosure was significantly more prevalent among the 9-11 and 12- to 17-year-olds compared to 5- to 8-year-olds (p-value < 0.001). The most frequently stated reason for disclosure was the hope that disclosure would improve medication adherence; the most frequently stated reason for nondisclosure was the belief that the child was too young to understand his/her illness. There was an inverse relationship between age and full disclosure and partial disclosure was rare across all age groups, suggesting a pattern of rapid, late disclosure. Disclosure programs should emphasize the importance of gradual disclosure, starting at younger ages, to maximize the benefits to the child and caregiver.

Why Tell Children: A Synthesis of the Global Literature on Reasons for Disclosing or Not Disclosing an HIV Diagnosis to Children 12 and under

“…Of these 145 articles, 18 (22, 23, 25–40) were selected as meeting inclusion criteria for this review. Listed in Table 1, articles concerned (1) caregivers’ rationales for fully disclosing and not disclosing children’s HIV status to the children and (2) included HIV+ children 12 and under.…”

“…Listed in Table 1, articles concerned (1) caregivers’ rationales for fully disclosing and not disclosing children’s HIV status to the children and (2) included HIV+ children 12 and under. Five discussed only reasons for non-disclosure (22, 29, 31, 37, 40); 3 documented only reasons for full disclosure (25, 38, 39); and the remaining 10 covered both full disclosure and non-disclosure (23, 26–28, 30, 32–36). Data originated from 11 countries: 9 of the 22 United Nations priority countries (10) for the elimination of childhood HIV [Democratic Republic of the Congo (DRC), Ethiopia, Ghana, India, Kenya, Nigeria, South Africa, Uganda, and Zambia], and Thailand and the United States of America (USA).…”

“…Thirteen articles examined their reasons for full disclosure (23, 25–28, 30, 32–36, 38, 39). Since these articles varied in whether or not they calculated the frequency with which caregivers used these reasons, the reasons are tabulated according to the number and percentage of articles in which they appeared in tables or text.…”

“…(3, 9, 21–23)]. However, in the literature to date, it is most often the primary caregiver, with or without assistance from health care workers, who actually discloses to the HIV+ children in their care.…”

Dealing with disclosure: Perspectives from HIV-positive children and their older carers living in rural south-western Uganda

“…Nevertheless a study exploring the psychosocial challenges of adolescents with HIV found that secrecy was used as a coping strategy to deal with potential stigma and discrimination from family members and the wider community (Mutumba et al, 2015b). In another study conducted in Uganda, age was identified as an important factor in HIV disclosure (Atwiine et al, 2015). Full disclosure was commonest among 9-11 year-olds and 12-17 year-olds as compared to younger ages because their carers thought they were emotionally prepared to understand the complexities of their illness and were more likely to infect other children (ibid.).…”