Research Article: Familial silence surrounding HIV and non-disclosure of HIV status to older children and adolescents

Date Published: February 04, 2018

Publisher: Taylor & Francis

Author(s): Grace McHugh, Victoria Simms, Chido Dziva Chikwari, Hilda Mujuru, Kusum Nathoo, Prosper Chonzi, Shungu Munyati, Ethel Dauya, Tsitsi Bandason, Joanna Busza, Rashida A Ferrand.


Increasing numbers of children with HIV are surviving to adolescence and beyond, many of whom are orphaned. Disclosure of childrens’ and adolescents’ HIV status has been shown to improve adherence and retention in HIV treatment programmes. We investigated caregiving arrangements and intra-familial experience of HIV and its relationship to HIV disclosure to older children and adolescents. Children aged 6–15 years, newly diagnosed with HIV infection or previously diagnosed but not engaged in HIV care, were recruited from seven primary care clinics in Harare, Zimbabwe. Their caregivers responded to a nurse-led questionnaire. Family history of HIV, disclosure of HIV status to the child and reasons for non-disclosure were ascertained. The association between sociodemographics, caregiving, family HIV history and other characteristics and non-disclosure of HIV status to the child was determined using univariate and multivariate logistic regression. We recruited 385 participants, median age = 11 years (IQR: 9–13); 52% were female. Disclosure had occurred in 79% of children aged 11–15 years and 19% of children aged 6–10 years. Age under 11 years (adjusted OR [aOR] = 18.89, 95% confidence interval [CI] = 10.64–33.55; p < 0.001), being male [aOR]= 2.56, 95% CI = 1.49–4.54; p = 0.001, being unaware of the parents’ HIV status [aOR]= 32.42, 95% CI = 13.19–79.71; p < 0.001, and being newly diagnosed [aOR]= 2.52, 95% CI = 1.29–4.91; p = 0.007, were independently associated with non-disclosure. Disclosure outside of the family occurred infrequently and included friends of family (7%), school teacher (8%), school headmaster (4%) and church pastor (6%). High non-disclosure rates were present as well as a lack of discussion about HIV within the family. Disclosure outside of family was low reflecting difficulty in caregivers’ ability to discuss HIV with their child or surrounding community. HIV programmes need to support families in the disclosure process.

Partial Text

The global scale-up of antiretroviral therapy (ART) programmes has dramatically reduced mother-to-child transmission, reducing the number of incident infections in children as well as improving survival among those infected with HIV. This is shifting the paediatric HIV epidemic from one characterised by high early childhood mortality towards chronic infection in older children and adolescents (Ben-Farhat et al., 2017; Sohn & Hazra, 2013). It is estimated that in 2014, 1.8 million adolescents between 10 and 19 years old were living with HIV worldwide, the majority in sub-Saharan Africa (UNAIDS, 2016). Early ART programmes focused on provision of life-saving treatment, given the high early infant mortality. As children with HIV get older and particularly as they enter adolescence – a period of rapid cognitive, physical and psychological growth, their psychosocial needs evolve, and addressing these are key to children attaining successful treatment outcomes (Domek, 2006). One such vital component of HIV care for older children is disclosure of their HIV status to them. Knowledge of HIV status has been shown to be associated with improved adherence to ART and a higher rate of retention in care among children and adolescents (Arrivé et al., 2012). The World Health Organisation (WHO) recommends that partial disclosure begins from the age of 6–7 years (World Health Organsiation, 2011). Ideally, by adolescence, youth should know their status. Despite this, disclosure is often delayed, and studies have reported that the proportion of older children and adolescents with knowledge of their HIV status ranges from as low as 1.2% up to 75% at various stages of their HIV care, and appears to be lower in low- and middle- income countries (median 20.4%) (Pinzon-Iregui, Beck-Sague, & Malow, 2013).

This cross-sectional study was nested within a prospective cohort study aimed at investigating the outcomes of treatment among children aged 6–15 years from the time of diagnosis of HIV infection, in seven public sector primary healthcare clinics (PHCs) in southwest Harare, Zimbabwe (McHugh et al., 2016). Provider-initiated HIV testing and counselling (PITC), was offered to all children aged 6–15 years attending the study clinics. Children aged below 16 years attending unaccompanied by a caregiver were not eligible for HIV testing as per national guidelines. A caregiver was defined as an adult >18 years, responsible for the child’s daily care. Caregivers were informed of the HIV test results at the time of testing. Discussion of HIV test results with the child was undertaken only with caregiver consent. Children found to be HIV-positive were referred for care within the same clinic where HIV test was performed, and were offered enrolment into the study.

We enrolled 385 children, of whom 52% were female and the median age at enrolment was 11 years, interquartile range (IQR) 8–13. The biological parent was the respondent to the questionnaire for 50% of participants. Almost all children (96%) were infected through mother-to-child transmission, and 23% of children had tested HIV positive in the past but had not engaged with care prior to enrolment into this study. The median age at enrolment in these previously tested children was 11 years and the median duration between initial HIV diagnosis and engagement with care through our study was 3.2 (IQR 0.14–13.0) years. School enrolment rates were high (91%), although nearly a quarter of participants had missed a week or more of school in the past three months, predominantly due to illness (Table 1).
Table 1.Participant socio-demographic characteristics at HIV diagnosis.VariableN = 385(%)Age, y,median (IQR)11 (8–13)Sex,female199 (52%)OrphanhoodBoth parents alive157 (41%)Maternal Orphan1150 (39%)Paternal Orphan2130 (34%)Double Orphan58 (15%)Current caregiverBiological parent220 (57%)Nonparent Caregiver165 (43%)Aunt/Uncle79 (48%)Grandparent61 (37%)Sibling17 (4%)Other relative4 (1%)Institution4 (1%)Currently enrolled in school351 (91%)Missed ≥5 days school in past 3 months380 (23%) -because of illness61 (76%) -financial reasons10 (13%) -other reason (relocation, death in family, teachers strike)5 (5%) -no reason given4 (1%)HIV within the family4(alive or dead)Both parents HIV+140 (36%)Mother HIV+250 (65%)Father HIV+172 (45%)One or more natural sibling HIV+551 (13%)1Mother alive/dead/unknown by n = 3.2Father alive/dead/unknown by n = 19.3Data missing for n = 4.4117 and 195 responders did not know mothers and fathers HIV status respectively.5123 respondents did not know participants sibling HIV status.

The main finding of our study is that caregivers of children living with HIV have difficulty in discussing HIV with their child resulting in high rates of non-disclosure to children after HIV diagnosis. Disclosure rates were low even to those children who had been diagnosed prior to testing in this study. WHO recommends that the disclosure process begins from age 6 years with age-appropriate discussions (World Health Organsiation, 2011). However, 29% of caregivers in our study were reluctant to broach the subject of HIV fearing the child was too young to understand. Females were more likely to be disclosed to than males, likely because girls are deemed to be more mature. Girls have sexual debut earlier than boys in this setting, and perhaps caregivers hoped to prevent onward transmission of HIV (Hallett et al., 2007; Pettifor, van der Straten, Dunbar, Shiboski, & Padian, 2004).




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