3.1.1. Disclosure Occurring as a Process
Disclosure in this sample was approached as a process and not as once only occurrence. Caregivers talk about a process of providing children with information appropriate for their ages and ability to understand.
I think it is important that she gets used to the disease at an early age and that you keep reminding the child at an early age and not when she is 11 or 12 years. I do not think it can be a problem if she is told at 5 years so that she grows up knowing about her illness and you continue building her understanding, and you tell the child information that she can understand. By the time she is 12 years she will understand because you would have given her a foundation (biological mother of a 12 years old).
If you tell him when he is much older he will be hurt, but if you tell him at an early age he grows up knowing about this thing (HIV) and he will understand it (aunt of a 13 years old).
The data show that the decision to disclose the HIV diagnosis to children was difficult, stressful and emotional for most of the caregivers prior to disclosure.
Eish! …, I was afraid…, I did not know how she was going to react…, I know the pain of knowing. I was hurt when I found that she is sick (biological mother of a 6 years old).
For caregivers who were not the biological mothers of the children, disclosure was easy, and they often disclosed immediately after the child came into their care or after diagnosis.
The reason I decided to tell him…, his mother died, and a few months later he got sick and was admitted in hospital. When we got home from the hospital, I sat him down and told him (grandmother of an 11 years old).
Besides the fact that caregivers experienced disclosure as emotional, they also reported that there was a time before disclosure when they did not know what to tell and how to tell their children about the HIV diagnosis.
Eish! …, In the beginning, it is very difficult to tell the child, it is difficult when the child is still small, you do not know where to begin. But one day I decided to tell him (grandmother of a 10 years old).
Planning and preparing for the disclosure event took different forms, and was depended on the emotional status and readiness of the caregiver to disclose.
It was scary…, whenever I wanted to tell him, I would take him to the McDonald’s because I was not sure how he was going to react, whether he will be angry at me. So I always postponed telling him, and I did it often. If the clinic prepare us, it will be helpful because it is difficult (biological mother of an 11 years old).
Although caregivers believed that disclosure should be planned, in reality, some of the disclosure events were accidental, unplanned and impulsive.
I was in the kitchen about to take my medication when she said mama drink your medication otherwise you are going to die. I said do you think I will die? And she said, “don’t you see that you are sick?” I said what is wrong with me? She said you have HIV, on TV they say people are dying from HIV. I was confused for a few minutes and I said it is better that I tell her and I said that is true, mama is HIV positive and so are you. She said “I am not sick” and you could see that she said that with all her heart, but I already said it and I could not take it back (biological mother of a 6 years old).
3.1.2. Asking HIV Related Questions
Caregivers reported that the disclosure event was influenced by their children’s asking questions about why they had to continuously take medication.
The child was asking why she was taking medication all the time and why other children were not taking medication. She was complaining that she is always being called to take medication while other children are playing. I had to explain that the treatment is for her life (grandmother of an 8 years old).
Some of the caregivers disclosed the HIV diagnosis to the child because of the child’s refusal to continue taking medication:
The reason I told him is because he did not want to take the medication, he takes his medication at six in the morning and evenings, and sometimes he comes around six thirty from playing. So, I decided that it is better that I tell him because it looks like he does not know (aunt of a 13 years old).
The reason I decided to tell her is because she would cry when I call her for treatment and say she is tired of taking medication (biological mother of a 13 years old).
Close to half (12 out of 27) of the children in this sample were maternal orphans and were cared for by relatives and foster parents. One of the reason caregivers disclose was in response to children’s questions about their biological parents.
He asked, and we told him that his mother and father died from AIDS, the other thing he also wanted to know the reason for taking medication (aunt of a 12 years old).
She was asking me about her mother and I explained that this is the reason you also have this disease (HIV), the disease that you suffer from is the same disease that killed your mother (aunt of a 12 years old).
3.1.3. Right Age to Tell
Caregivers perceived the age when the child is told about the diagnosis as important for the child to be able to manage the disclosure. Some of the caregivers disclosed because they believed that it was the right age for the child to know.
I think we helped him to know so that he grows up knowing his condition. I am also grateful that if I die XXX will not suffer because he will know his condition (grandmother of a 10 years old).
When the child knows about his illness he can deal with that better and does not think about it all the time (biological father of a 14 years old).
Fear that the child will infect other children was a great concern for caregivers in this study sample. Protecting other children from being infected was the reason why children should know their HIV diagnosis.
The reason I told her is because I wanted her to know what is wrong with her so that if she is playing with other children and something happens to her, and there is blood she should not allow people to touch her (aunt of a 12 years old).
3.1.4. The Child’s Reaction to the Diagnosis
Prior to disclosure most caregivers were fearful of the children’s reaction to the disclosure. Responding to the question of how their children reacted to learning about their HIV diagnosis, some caregivers reported that children were mostly saddened by the disclosure.
He went to the disclosure camp, and when he came back he was angry with me and was unhappy and moody, when I tried to find out what was wrong I realized that I was hurting him more. When he got back from the camp he did not want to come close to me, and he was crying all the time and did not want to discuss that topic (biological mother of a 9 years old).
She was not angry but was sad…, after being told, she isolated herself from us, and when I asked her what she was thinking of she said I am not thinking about anything mama. But I could see that what I told her was making her sad (biological mother of a 13 years old).
In contrast, some caregivers experienced the disclosure occurrence differently and reported that their children were able to easily accept the disclosure.
She wanted to know if the medication she was taking was for HIV, and I said yes, she said “if I do not drink the medication, will I die”, I said yes you will die. She wanted to know how long will she be taking this medication, and I told her that she will take medication for the rest of her life. She reacted well to this, and she was not upset or hurt (foster mother of a 10 years old).
One of the challenges for the caregivers before disclosure was fear that the child was going to ask about the source of the infection. Data show that indeed children asked about the source of the disease after learning about their HIV diagnosis.
My child asked why she is positive and she wanted to know if I was also positive, I told her that I am positive but not yet taking medication (biological mother of a 12 years old).
He asked why he was taking medication and what the medication was for; he also asked me how he got the disease (grandmother of a 10 years old).
Most of the disclosure in this sample was prompted by issues around medication. Reports from caregivers show that following disclosure children became adherent to the medication.
Now when it is time for treatment, she comes running even if she was playing outside. Now she is able to take her medication on her own (foster mother of a 10 years old).
Since then…, around six in the evenings she comes, even if she has been playing she will go to the bedroom and take her medication. She does not have problems anymore (biological mother of a 11 years old).
Reports from caregivers also show that adhering to their medication for most children in the sample also meant ensuring that their biological HIV infected caregivers were adherent to their medication too.
She knows and reminds me of the times for my treatment. She is happy these days. She has no problems; she knows her times for her medication (biological mother of an 11 years old).
Even if I am not there he knows that we both take medication. Sometimes I leave the house early in the morning, when I get back he would ask if I have taken my medication (biological mother of a 9 years old).
Often caregivers instructed children to keep their HIV diagnosis secret for fear of negative consequences should the child tell others about their disease. However, even in the absence of instructions the children still kept their HIV diagnosis secret.
We did not tell him to talk or not to talk, but the way I see it, he does not talk, I would not like him to talk (brother of an 8 years old).
We did not say anything she just kept quiet, and she is quiet about that (aunt of a 14 years old).
The decision to disclose the diagnosis to HIV infected children was difficult for most caregivers in this study. Similar to other studies, caregivers found disclosure to be an emotionally traumatic event [40,41]. Caregivers delayed disclosure because they were fearful that their children would ask about the source of the infection, which they perceived as a difficult question to answer. Consequently, only 12 of the 27 children were told about their diagnosis by biological mothers, the rest were disclosed to by nonbiological caregivers. This study and others, argue that nonbiological caregivers do not have to deal with most of the fears that biological parents have first to deal with, like passing the infection on to the children. For biological caregivers disclosing the HIV diagnosis to children is comparable to disclosure of the parent’s HIV status [16,22,23,41]. When nonbiological caregivers disclose there is less blame and guilt than when biological caregivers disclose . As a result, nonbiological caregivers often disclosed shortly after the child came into their care or after the HIV diagnosis.
Literature on HIV disclosure to children conceptualises disclosure as a once-off event or a process when information about the diagnosis is provided to the child . Ledlie  discusses three main patterns of disclosure and maintains that disclosure to children is a process that caregivers pass through with a continuum of conditions from total secrecy to partial disclosure to full disclosure. The same patterns of disclosure were observed in this study, most biological caregivers employed full disclosure in telling their children about the diagnosis, while nonbiological caregivers were inclined to use partial disclosure. Partial disclosure refers to the strategy whereby caregivers provide children with information about their illness without naming the disease as HIV/ AIDS . Caregivers in this study often told children that they have a disease similar to what their mothers had. Given that only 12 of the 27 children were told their HIV diagnosis by their biological mothers, the data suggest that most children in the study received partially disclosure.
Similar to other studies, some of the caregivers in this study approached disclosure as a process; planning and preparing for the disclosure event [16,23,32,33,41,42]. Prior to disclosure, caregivers planned the disclosure event over a long period. Planning involved specific activities including buying toys, cell phones, or taking the child out for lunch to prepare for the disclosure event. Similar planning activities were reported . In addition, caregivers exposed the children to HIV related programs on TV to provide them with HIV-related information in preparation for disclosure. While other caregivers read HIV and AIDS booklets with their children. The reading sessions were used to provide children with explanations about HIV. These activities influenced caregivers and their children positively, and made disclosure easy.
However, data from this study and others show that not every disclosure event was well planned and prepared for [16,42]. Some of the caregivers disclosed during moments of frustration in response to the child’s refusal to take ART medication. Caregivers also disclosed impulsively because the child persistently asked questions about the nature of their illness. Similar findings were reported in other studies [16,42,43]. Disclosure was also a once off impulsive event when nonbiological caregivers disclosed soon after the child was diagnosed with HIV or came under their care. The impulsive nature of HIV disclosure to children could be attributed to caregiver lack of disclosure skills as well as the lack of disclosure guidelines reported in many studies [7,20,44, 45].
The child’s reluctance to adhere to ART medication prompted disclosure in some cases. Some caregivers disclosed because of the child’s refusal to continue taking ART medication. While others disclosed because the child was persistent in asking questions about taking medication continuously. These findings should be viewed in the context where most of the children were healthy and asymptomatic during field work, and they could not understand why they had to take ART medication. The data generally agree with findings from previous studies [14- 16,23,30,46,47]. In line with previous findings, children became adherent to their ART medication on learning about their diagnosis . Adhering to medication for most children also meant ensuring that their biological caregivers were adherent to their medication too. A variety of aids like watches with timers, reminder notices and mobile phone alarms were used to remind them to take their medication. Similar findings were reported in previous studies [46,49].
One other reason for disclosure was the persistent questioning from symptomatic children about the nature of their disease. Other studies also reported similar findings [46,50]. Persistent illness-related questioning was not one of the main reasons why caregivers disclosed to children. Most children were on ART medication for three years and were asymptomatic and healthy. Caregivers also disclosed because children were asking questions about the death of their biological parents; 12 of the 27 children were maternal orphans. According to Vaz et al.  caregivers view disease-related questions as a motivation to tell children of their HIV diagnosis. Contrary to that, in this study, disclosure prompted by persistent illness related questioning was often unplanned, impulsive and partial.
The right age to tell, also determined disclosure of HIV to children, the right age is contextualized as the time when the child is perceived to have the ability to understand the diagnosis. Caregivers disclosed because they believed that once children learn about their HIV diagnosis they will be able to manage the disease better. In line with this view, Bhattacharya  reported better self-care as the most frequently cited advantage of disclosure among children who were told about their HIV diagnosis. The right time to disclose for many caregivers was the time when the child reaches adolescence. Similar findings were reported previously [8,16,30,40]. Furthermore, caregivers in this study and others, disclosed to the adolescent primarily to protect their children, and also to protect others from becoming infected [12,16,30].
The children’s initial reaction to disclosure was crying, shock, disbelief, and anger. Children were saddened by the disclosure; they isolated themselves, were often moody, tearful and withdrawn. Some caregivers reported that their children reacted well to the disclosure and were able to accept the diagnosis. Mellins et al.  argue that, caregivers tended to underestimate the level of shock to children and overestimate the percentage of neutral reactions of children at the time of the disclosure. This study argues that given the process of disclosure employed by most caregivers, it is likely that the same phenomenon could have happened to caregivers’ estimation of the reactions of their children. For some caregivers, disclosure was a once-off impulsive occurrence and not a process that required multiple conversations as suggested by Mellins .
Recent findings from Vaz et al.  show that upon learning about their diagnosis, most children did not ask questions or verbalize their concerns to anyone. Although children in this study asked questions following disclosure, caregivers did not associate the questioning to concerns that the children have about their diagnosis. Children asked questions about how long they were expected to take their ART medication, whether their biological caregiver was also infected with HIV, whether their siblings were infected, they wanted to know if they were going to die, as well as the source of their infection. Similar findings were reported .
In response to learning about their diagnosis, children developed strategies to manage their reception of the HIV disclosure. Secrecy was used as a strategy to manage HIV disclosure by the children. Caregivers reported that after disclosure, some of the children were instructed to keep the diagnosis secret, due to the stigma associated with HIV and AIDS. However, even when children were not instructed to keep the diagnosis secret, they still kept the diagnosis secret. This phenomenon was also identified by Hejoaka  who argues that children keep the diagnosis secret because of their awareness of the secret nature of the disease. In an endeavor to keep the diagnosis secret, children in this study developed strategies to conceal their ART medications and the disease. They used diverse strategies in the presence of other persons to notify the caregiver discreetly that it is time for their medication. These findings are similar to other studies [32,52].
We found that HIV disclosure to children was influenced by the caregiver and child related factors as well as the social context of HIV infection and disclosure. The interplay of these factors resulted in HIV disclosure being delayed sometimes to older age and adolescence. Biological mothers, as compared to nonbiological caregivers experienced disclosure as traumatic, and feared that they would be blamed for the HIV infection. Consequently, biological mothers often approached disclosure as a process and planned and prepared for the disclosure event. Full disclosure often occurred when the biological caregivers believed that they had dealt with their own personal fears over the child’s diagnosis. However, planning and preparing for the disclosure often resulted in disclosure being delayed to late adolescence. When disclosure is delayed till late adolescence, adherence to ART medication becomes a problem; hence most caregivers disclosed because the child was not adherent to medication or repeatedly questioned the reasons for taking medication. Taking into consideration that an increasing number of children are diagnosed in their early teens, early disclosure of HIV to these children should take priority to ensure adherence to ART medication. The role of the health care providers in facilitating HIV disclosure to children becomes crucial.
In contrast, nonbiological caregivers often disclosed impulsively to children soon after the child was diagnosed with HIV or came under their care. These findings have implications for HIV disclosure to infected children. When disclosure was a once of event and partial, HIV infected children lose the opportunity to ask questions and to be taught about their disease and ART medication. Caregivers often delay disclosure because they lack disclosure skills; an impulsive disclosure is also an indication of the lack of disclosure skills as well as the lack of the comprehension of the impact of a HIV diagnosis disclosure to a child. When disclosure is once off, caregivers also downplay the reactions of the child to the HIV disclosure, hence the report that most children reacted well to the disclosure. The development of disclosure guidelines to assist caregivers to disclose HIV to infected children has been the subject of debates for a more than a decade. The increased survival of children on ART in developing countries like South Africa calls for a concerted effort from researchers and health care providers to develop disclosure guidelines to assist caregivers to disclose to children in a manner that would promote the wellbeing of the child.
The outcome of disclosure was positive for most children, after learning about their HIV diagnosis, children became adherent to ART medication they also ensured that their HIV infected biological caregivers were adherent too. In spite of this, children kept their diagnosis secret; they used secrecy as a strategy to conceal their ART medication as well as the disease from people outside their immediate families. Keeping a secret is an additional burden for children who have to cope with their HIV diagnosis, adhere to ART medication, and monitor their caregivers’ adherence to their ART medication. Disclosure guidelines should take into consideration the secret nature of HIV and educate caregivers about the negative impact of secrets on the child.
This research was partially funded by AAU Grants for Graduate Research and Scholarship. We thank Mr. Abram Maubane the research assistant as well as Ms Chidi Matlala an MPH intern for their role in data collection. We also thank health care providers from the paediatric clinics of Doctor George Mukhari hospital for their guidance and assistance during data collection.