Equipping Perinatally Infected HIV Positive Children for the Future: How Can We Support Paediatric HIV Disclosure in South Africa?
Namhla Sicwebu (PhD candidate, UCT)
Editorial note: In this piece, PhD candidate and staff member Namhla Sicwebu describes the context for paediatric disclosure in South Africa. She reflects on findings from her Masters study, an evaluation of a Médecins Sans Frontières (MSF) intervention aimed at piloting caregiver-led paediatric disclosure.
South Africa has made significant advances in the prevention of mother-to-child transmission (PMTCT) of HIV. Despite these successes in PMTCT, there is still a significant incidence of perinatally-infected HIV-positive children. In 2017, it was estimated that 7.7% of young people aged 15-24 years were living with HIV (1), 62% of whom were infected perinatally (2). Due to increased access to antiretroviral therapy (ART), people living with HIV are living longer and HIV is increasingly being viewed as a chronic disease (3). Compared to many other chronic diseases such as asthma and childhood cancer, HIV still carries a considerable burden of stigma which can make it very difficult to disclose an HIV status to an infected child. The psychosocial importance and other benefits of disclosure have been well-established (4) but caregivers of perinatally infected children often delay paediatric HIV disclosure, citing fear of stigma as the main reason for their decision. Children are consequently deprived of the social and mental benefits of knowing their HIV status, and as they get older and more independent, their adherence to strict ART regimens may be endangered. Despite caregivers’ reluctance, as children get older, they need to be informed about their diagnosis to ensure they are proactive in their own healthcare.
Paediatric HIV disclosure is best done as a staged process whereby a child gradually learns about his or her HIV status, as well as how to treat and manage HIV. It is important to note that disclosure of HIV status to a child differs to adult disclosure, which usually occurs in a single conversation during diagnosis. In its 2012 Guideline on HIV disclosure counselling for children up to 12 years of age, the World Health Organization (WHO) noted that children are better equipped to handle the disclosure of their HIV status by a trusted caregiver or healthcare worker when it is part of a staged process that occurs over multiple interactions (5). Ideally, children are meant to move from unawareness of their diagnosis, through a series of partial disclosure conversations, and finally, to full disclosure. During partial disclosure, HIV is not named and caregivers/healthcare workers are encouraged to use metaphors to explain relevant and age-appropriate aspects of HIV to children e.g. children are typically first told that they have a “sleeping” (dormant) germ/virus that can only be suppressed by medication. Children can thus be taught to take proactive action toward ensuring their bodies remain strong and healthy, before they fully understand what the virus is and how it works. The name ‘HIV’ is only introduced during full disclosure and conversations are meant to be ongoing. However, this staged framework is not always adopted, particularly in low-middle-income countries (LMICs) where some children live without their parents and there is limited support for disclosure (6).
MSF’s Caregiver-led Disclosure Programme
The peri-urban township of Khayelitsha has the highest prevalence of HIV in the Western Cape province (9). In 2014, programmers at MSF realised that there were children as old as 16 living in Khayelitsha who were unaware of their HIV positive status. Investigation into the issue revealed three main factors that contributed to the status quo: 1) healthcare workers were unable to keep track of children’s HIV disclosure status due to a high workload, meaning they did not know which children knew about their status and which did not; 2) most healthcare workers indicated that they had never received specific training for paediatric HIV disclosure; 3) in the few cases where healthcare workers healthcare workers had raised the possibility of disclosure, caregivers had been reluctant to initiate disclosure. Without caregiver buy-in, it is nearly impossible to proceed with disclosure. As such, it is important to understand caregiver concerns and to establish ways to gain their buy-in. Conversations with caregivers at the formative phase of the intervention revealed that their reluctance to disclose was driven by a sense of guilt for having passed the virus on to their children, their lack of disclosure skills and knowledge, and the fear that paediatric disclosure would have a negative impact on their children’s psychosocial wellbeing. In response to these fears, MSF developed a set of disclosure booklets to support the process of caregiver-led disclosure.
The programme began with a session in which healthcare workers introduced the concept of disclosure to caregivers without their children present. Once caregivers felt comfortable with the idea, the next step was for healthcare workers to give each caregiver a set of four disclosure booklets. MSF’s four illustrated disclosure booklets were geared towards assisting caregivers with staged paediatric disclosure, in line with local and global guidelines. Two of the booklets were for children. These age-appropriate booklets aimed to introduce basic health concepts and the importance of medication to children, to ready them for disclosure. Caregivers were encouraged to read these books with their children. The remaining two booklets were for caregivers and aimed to prepare caregivers themselves for the disclosure process, as this has emerged as a key barrier to paediatric disclosure. For caregivers, book 1 addressed partial disclosure and book 2, full disclosure. The booklets aimed at caregivers outlined the importance of disclosure, how caregivers could introduce and facilitate disclosure discussions with their children, when and where to disclose, and lastly, who could be involved in the disclosure process. Caregivers were encouraged to keep the communication lines open between them and their children during and after disclosure, and to inform their healthcare workers that they had disclosed. In turn, healthcare workers were expected to monitor the children and their feelings, and to involve the children in their own care.
The decision to position caregivers as the primary driver of disclosure set the MSF disclosure programme apart from similar initiatives. Unlike other paediatric disclosure programmes, MSF aimed to move disclosure from a clinical setting “to the community” to decrease the burden on an overextended health system (6). Caregivers were made the main focus of the MSF programme for two main reasons. Firstly, WHO indicates that it is important for children to receive disclosure from a trusted caregiver or healthcare worker. However, South Africa faces a high attrition of public healthcare workers, which leads to regular rotations in healthcare workers within or among facilities, a factor that often prevents continuity of care (9). This poses a challenge to the recommended staged paediatric HIV process, which suggests ongoing conversations with the person who has disclosed to the child, and highlights the importance of trust in this relationship. South African healthcare workers also have an already high workload and are often unable to dedicate the additional time needed to conduct sensitive, high-quality disclosure conversations. During and after disclosure, children need ongoing social support that healthcare workers are unable to provide under the current healthcare system.
WHO and the NDoH both advocate for the involvement of social organisations such as churches and NGOs as additional sources of social support but this might not always be desirable for caregivers, particularly in areas where HIV stigma is still high. In this study, most caregivers kept their status and that of the child a secret, and as such, there were fears about their privacy. In other cases, caregivers indicated that these organisations were located too far from the area where they lived to be of benefit. This presented a challenge to the programme, since it was theorised that caregivers might be able to spearhead the disclosure process if they received the necessary resources, education and support from healthcare workers and their community.
Caregivers’ Responses to the Programme and Experiences of Paediatric Disclosure: Reflections on a Programme Evaluation
The findings shared below are drawn from my Masters research, which was conducted in parallel to MSF’s paediatric disclosure programme. Prior to the implementation of the intervention, most caregivers indicated that they were not ready for early disclosure. They cited the prevalence of stigma against HIV positive people in their communities as the main reason for their decision. They also said that they did not understand the benefits of disclosure, particularly since they believed that it would cause more harm than good. Caregivers indicated that younger children could inadvertently reveal their status to others, potentially opening themselves, and the family, to stigma. Conversely, the caregivers of older children were open to disclosure and grateful at the idea that they might receive assistance. Their openness was driven by their belief that older children would understand the gravity of their status and the crucial importance of keeping it a secret. Although they agreed disclosure was important and that it was the correct time to begin, caregivers of older children were still reluctant to drive the disclosure process themselves. Caregivers of younger children were even harder to convince, particularly since they felt strongly that it was best to delay disclosure since their young children lack the ability to make sense of their status. Even if they were not yet sure about disclosing, caregivers were encouraged to take the books home, read them, and ask questions at subsequent visits.
When caregivers expressed concerns about their child’s age and ability to understand the diagnosis, they were informed that early disclosure results in better outcomes than delayed disclosure. They were also assured that the evidence-based framework used to develop the intervention was age-appropriate and would maximise the benefits of disclosure and reduce harm (5). The framework in question was based on child development theories, such as Piaget’s theory of cognitive development. In line with this theory, school-going children have the capacity to think and reason in concrete terms, an ability which increases with age (10). At the age of six, children should thus be able to handle partial disclosure, which covers lessons about their bodies and how they work in relation to medicine. Similarly, in line with this theory, children should be ready for full disclosure by the age 12 years. As children get older, their power of deduction and reflection increases, and as such, they have the ability to reason out the consequences of their actions, a factor that is significant for children who live in areas where HIV-positive people experience a lot of stigma and there is a greater need to keep one’s status a secret.
These assurances, that according to evidence early and iterative disclosure is both age-appropriate and more likely to produce better health outcomes, were not enough to gain caregivers’ complete buy-in. Caregivers theorised that the preponderance of HIV stigma would affect how their children reacted to disclosure. They worried that their children would struggle to accept their status and that this would lead to emotional and psychological distress. One caregiver was afraid that her young daughter would run outside and attempt to kill herself if she learned that she was HIV-positive. This was further complicated by caregivers’ personal fears or guilt. During individual interviews, it quickly became apparent that most caregivers were still trying to come to terms with the reality of having passed a virus so steeped in stigma to their children. Some revealed that they lived with the deep fear that their children might blame them after disclosure for their ‘failure’ to protect them. Some caregivers also shared that their own families were not even aware of their children’s HIV status. For example, I encountered a single mother of four girls – the three older girls were HIV-negative but the youngest daughter had been infected at birth. At the time of our interview, the mother indicated that she had just informed the oldest daughter (in her late twenties) that both she (the mother) and her youngest daughter were both HIV-positive. The rest of the siblings and wider family members were not aware, and the mother could not bring herself to disclose to them. The threat of stigma, therefore, was not only from ‘outside’.
While stigma and personal guilt seemed to motivate most of the caregivers’ concerns, these were not the only factors that deterred early disclosure. Early in the intervention, caregivers informed us that they had no idea how to initiate the conversation and were concerned they would not be able to answer the questions that their children would ask them. A foster mother of an HIV-positive boy revealed that she was unable to disclose for cultural reasons. She strongly believed that she could not introduce disclosure without talking about sex, as she assumed the young boy would want to know how he had been infected. She found the prospect of a conversation about sex with a minor particularly difficult due to cultural taboos.
Despite these fears and sense of discomfort, caregivers were assured that the booklets would guide them through how to introduce the topic, maintain open conversations and answer some of the most frequently asked questions during disclosure. They were also assured that the books were age-appropriate and should not have any adverse impact. This assurance allayed some of their fears and a few weeks after they had received the booklets, some of the caregivers indicated that they had started disclosure.
Although some caregivers had begun to disclose, when I asked further questions about the disclosure process, I realised that it had not always happened in line with recommendations. For example, there were instances of once-off disclosure, particularly in cases where caregivers were unable to read the disclosure booklets. Most of these caregivers said that they had initiated disclosure after their conversation with their healthcare workers. However, one caregiver indicated that she had read the booklets but decided to move from no disclosure to full disclosure during just one casual conversation with her 12-year-old daughter. During our subsequent conversations, she revealed to me that she did not fully understand the benefits of the staged approach. She further shared that because she had only had a single conversation with her daughter, she was struggling to determine how her daughter felt about the diagnosis. She could not properly assess whether her daughter understood what they discussed or how it had affected her emotionally.
In other cases, caregivers had followed the guidelines. One 8-year-old girl’s caregiver (her grandmother’s sister) indicated that she had decided to adopt the recommended staged approach. Unlike the mother of the 12-year old described above, this caregiver had not read any of the disclosure booklets (she could not read) but had had a productive conversation about paediatric disclosure with her healthcare workers. At the time of our interview, she had started the partial disclosure conversation and was planning to initiate full disclosure two years later. She felt that it was important for her grandniece to be more proactive in her healthcare as the child’s mother had already died, and the caregiver did not know how much longer she would be alive to care for the young girl. She also indicated that everyone who lived with them knew about the young girl’s status, and therefore, that there was no need for secrecy. This seemed to be a key facilitator of a commitment to recommended approaches to paediatric disclosure.
Many of the caregivers who decided to disclose were driven by their fear of future non-adherence issues for their children. While their children were currently taking medication diligently and without any problems, caregivers shared that they had been told they might face adherence issues in the future if they did not disclose to their children. While fears of non-adherence acted as a powerful trigger for disclosure, they also reinforced the problematic and insufficient practice of once-off disclosure. Disclosure was viewed as a binary outcome, as opposed to a process that would lead to better mental and social wellbeing and as a result, to improved health outcomes.
Despite strong fears of future non-adherence, it is important to note that not all parents chose to disclose as recommended. While caregivers acknowledged the usefulness of the booklets, they also made it clear that they developed and used their own criteria to “test” their children’s readiness for disclosure. Age was a prominent consideration. It was strongly believed that at around the age of 12, most children were in position to make sense of their diagnosis as they were perceived as having reached a certain level of maturity. However, maturity was not always tied to age. Children who displayed intellect and were curious about their health, and who questioned why they took medication even though they are not sick and go to the clinic frequently were thought to be mature. Younger children who displayed signs of maturity were deemed to be ready for disclosure. Therefore, parents who determined that their children had not reached an acceptable level of maturity decided to withhold disclosure. They indicated that they planned to consult the booklets in the future when they decided that disclosure would be appropriate and found themselves in the position to disclose.
Conclusion
Paediatric HIV disclosure is important for the overall health of children living with HIV and the adoption of staged early disclosure ought to be promoted. Due to the widespread practice of late paediatric HIV disclosure observed in LMICs, the WHO implored its nation states to adopt country specific strategies and guidelines to address and promote staged, age-appropriate HIV disclosure (5). These guidelines acknowledge the importance of paediatric HIV disclosure programmes as a possible solution to the low adoption of early disclosure, as they have produced promising results in other contexts. These programmes are important mainly because many perinatally infected older children in LMICs are unaware of their HIV status and cannot be proactive in their healthcare management. As these individuals become more independent, their treatment adherence is also placed at risk, as lack of disclosure can lead to non-compliance. However, paediatric HIV disclosure can be very hard. Caregivers are deterred from disclosure by high rates of HIV stigma, a sense of guilt and pain about passing the virus to their children, and a lack of knowledge about and support for disclosure. Paediatric HIV disclosure programmes can be helpful because they aim to provide structure, resources and support for early disclosure for both HCWs and caregivers, whilst minimising strain on the healthcare system. However, paediatric HIV disclosure programmes need to be continually refined and adapted to suit their context.
In South Africa, programmes need to account for the harsh and ongoing realities of severe HIV stigma. Programmers need to devise strategies for the promotion of rich disclosure conversations in the context of secrecy and silence, within and outside the home. Secrecy within the household places greater burden to disclosure and needs to be addressed urgently. Further, in a context where cultural taboos discourage conversations about sex with children, programmers need to build programmes that are sensitive to this reality and seek to address it in a constructive manner. It is important to find ways to foster open conversations about difficult subjects between caregivers and children that does not undermine cultural sensitivities. Finally, to discourage the adoption of ‘once off’ disclosure, programmers need to ensure that they adequately communicate the philosophy of the staged disclosure process, and its benefits for the overall health of children. These conversations are nearly impossible in the context of ‘once off’ disclosure. Both caregivers and healthcare workers need to understand that disclosure goes beyond ensuring treatment adherence; instead, programmers need to ensure that they communicate that paediatric HIV disclosure is also about ensuring that children have access to psychosocial support that will enable them to stay in care.
References
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Author Biography
Email: namhla.sicwebu@uct.ac.za