“When am I going to stop taking the drug?” Enablers, barriers and processes of disclosure of HIV status by caregivers to adolescents in a rural district in Zambia

Abstract

BackgroundDisclosure of adolescents’ own HIV status by caregivers is not only challenging but low. The reasons for this remain unclear despite efforts to examine and seek to understand disclosure patterns or factors that may either facilitate or inhibit this disclosure. This study explored the enablers, barriers and processes of disclosure of HIV status to adolescents by their caregivers in Kafue district of Zambia.MethodsA case study method was used to understand factors that facilitate or inhibit caregiver’s ability to disclose the HIV status of adolescents aged 10–15 years. Data collected through in-depth interviews with 30 caregivers as well as 6 key informants were analysed using thematic analysis.ResultsOverall, 17 out of 30 (56.7 %) caregivers had informed the adolescents about their HIV status. Reasons for disclosing of the HIV status included inquiries by adolescents as to why they were taking medication, threats by adolescents not to take HIV medication, desire to promote treatment self-efficacy amongst adolescents as well as facilitating adoption of safe sexual behaviour among adolescents. The disclosure processes were conducted either at the home or at the clinic. Enabling factors for HIV disclosure were adolescents’ knowledge of HIV and caregivers’ knowledge of and experience with HIV programs. Barriers to disclosure of HIV status included fear of psychological trauma for the adolescents, perceived inability of adolescents to keep their HIV status confidential which could attract HIV stigmatisation for the family, and caregivers’, fear of being blamed by the adolescents for the infection, limited disclosure skills by caregivers as well as negative attitude by some HIV counsellors.ConclusionsDespite challenges associated with disclosure of adolescents’ own HIV status by caregivers, environments that facilitate this process exist and can be strengthened. Promoting HIV disclosure requires in-depth and context-specific understanding of the factors that enable and undermine this process. Limitations in this understanding may have played critical roles in past strategic implementation of locally driven and relevant interventions to improve disclosure of HIV status by caregivers to adolescents in Zambia.

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

“…Research from sub-Saharan African settings suggests that parents and carers sometimes disclose the child's HIV status to him or her when the child directly asks why they are on drugs; when they show no interest in taking their drugs; and when the carer wants the child to avoid 'risky' sexual behavior (Mweemba et al, 2015). Sometimes the process was also facilitated by the child's level of knowledge of HIV and whether the caregiver was knowledgeable about HIV and related services (ibid.).…”

“…Older carers, either with shared or complete responsibility for a child or children may play a vital role in mediating multiple aspects of their care and wellbeing. A study in Western Kenya found that 1 in 5 caretakers of orphans was over 55 years of age and that the older carers faced serious challenges in terms of accessing schooling, medical care and food for children they cared for (Nyambedha et al, 2003). It is important to consider these challenges in the development of interventions to support carers of all ages in the vital role they play in looking after children living with HIV.…”

Caregivers Lack of Disclosure Skills Delays Disclosure to Children with Perinatal HIV in Resource-Limited Communities: Multicenter Qualitative Data from South Africa and Botswana

“…On the other hand, nondisclosure is one of the barriers to ART adherence among children and adolescents in resource-limited settings [5, 6]. Of concern in the area of public health are the low rates of disclosure to children and adolescents in resource-limited settings where the highest numbers of perinatally infected children reside [1, 5, 7–10]. It is also concerning that the reasons for these low rates of disclosure are not fully understood [4] because HIV status disclosure to children remains understudied in resource-limited settings [11].…”

“…There are also numerous child related fears that are cited as barriers to disclosure such as the fear that the child would tell others about their HIV status, fear of stigmatization, social rejection, and isolation, fear of the children's resentment, and fear that disclosure would hurt the child [2, 4, 5, 7–9, 13–15]. From the limited data on caregiver related barriers to disclosure, the most commonly cited include lack of HIV knowledge, lack of communication skills on HIV, lack of skills on how to conduct HIV disclosure, fear of answering questions related to the source of the HIV infection, unpreparedness for HIV related questions, lack of adequate knowledge about the benefits of disclosure, emotional unpreparedness to disclose, and fear of being judged and blamed by the adolescent [9, 10, 16, 17]. The identified caregiver related barriers suggest that disclosure is often delayed because caregivers lack the knowledge and skills to disclose to children.…”

“…The identified caregiver related barriers suggest that disclosure is often delayed because caregivers lack the knowledge and skills to disclose to children. However, there is evidence that often caregivers of perinatally infected children require support from health professionals during the disclosure process or expect health professionals to disclosure on their behalf [2, 4, 9, 10, 14, 16, 18]. Therefore, to promote disclosure to children, it is important that the focus of investigations changes from exploring the social context of disclosure to the personal attributes and beliefs of the caregivers.…”