shows the venue and location of the focus groups and the participants’ sex and age range. There were 80 participants: 51 caregivers in 4 groups, 24 health-care providers in 2 groups, and 5 HIV-positive children who knew their serostatus in 1 group.
Characteristics of Focus Group Participants, Eastern Cape Province, South Africa, October 2010 to March 2011.
A theme that emerged in the health-care provider focus groups was that caregivers lack knowledge of HIV, its symptoms, transmission, and treatment, which prevents them from disclosing the HIV diagnosis to the children. They said caregivers “should start talking to the child from the age of 5 to 7, but definitely before the child starts schooling.” They felt that “the disclosure process should be completed by the age of 12 years, but definitely before the child becomes sexually active.” When asked, “Who should talk to the child,” they said “the parent or caregiver who stays with the child” and “the person who talks with the child and is responsible for the child.” However, they also said, “Most parents do not know enough about the disease and try to hide the facts from the child.” Other barriers to disclosure mentioned were “stigma,” “fear of isolation,” “fear of blame,” “fear of guilt,” and “gossip.” When asked why there was stigma, they explained that in people’s minds HIV is associated with “sleeping around.”
The providers expressed strongly that “the child has a right to know” and “it has by the constitution the right to learn everything about the disease.” This was specifically mentioned within the discussion that some parents try to prevent the child from learning about the disease. One provider said, “Some mothers would rather move from clinic to clinic before they would agree that the child learns about the disease.”
The providers suggested that caregivers should disclose “to get the cooperation and understanding of the child.” They also said, “the child will be empowered to make the right decisions” and “they need to learn how they can protect themselves and others from the disease.” The providers suggested that parents would want to participate in a program to help them disclose. They said that “parents/caregivers can be educated about the disease,” and “if they are educated, they are empowered to talk to the child.”
Providers said the intervention should “be in the level of the child’s age and understanding,” but cautioned that children who are sick are much more mature than are other children. They said “adults need to stop treating children like they would not understand,” “children do understand more than adults think,” and “children who are sick often mature earlier than healthy children.” The intervention should address, they said, “details about the disease, treatment, infection,” “symptoms,” “stigmatization,” “how to accept HIV and being able to live with it,” “abstinence,” “condom use,” and “precaution measures.”
A theme that emerged in the caregiver focus groups was that caregivers lacked the knowledge and skills to disclose to the children and to handle the children’s reactions. The participants agreed that children age 5 or 6 years should learn about the disease. They suggested that “his mother” or “a very close person to the child,” “a person he trusts even if it’s not the mother,” or “the person who is taking care of the child” would be the best to inform the children.
There was a consensus among the participants that caregivers need help. They said, “We are desperate for help on how to help our children and would love to be able to be part of a support group.” They suggested that a program for caregivers should include “information about the disease,” “transmission,” “treatment,” “combating stigma,” as well as “healthy diet,” “nutrition,” and “growing vegetables.” An example of a gap in their knowledge was “not being sure of how the child gets infected from the mother.” One mother said, “I don’t know how I got it. I do not know what the disease is myself. How can I explain any of this to my child?” Another mother said, “I do not know how I got it. I only had my husband all my life. So, how can I explain to my daughter that she is sick?” They also said “We need counseling skills so that we know what to say” and that they needed “some counseling skills so that we will be able to convince the children that HIV is not the end of the world.” In a similar vein, some reported difficulties when they had tried to disclose to their child. One mother said, “I tried to tell my child but it insisted that it would have TB.”
Other barriers to talking to the children were “knowing the right time and age to talk to them” and “fear of the children going out to tell other people about what they have been told.” There was concern that the child might react negatively. They said, “We fear how the child might react” and “what if they do not accept and end up committing suicide?” “Fear of isolation,” fear of blame,” and particularly “stigma,” the caregivers also said prevented them from disclosing. They said, “the area is full of gossip” and assured the facilitator that “if she were to walk from the orphanage, people on the streets would ask why she visited the house as she will get infected as the people who live there are all sick.”
However, some caregivers expressed concern about not disclosing because if the children did not learn from the caregivers, the children might learn from others, at school or in the street, which might be disasterous. One caregiver said, “they end up hearing it from the streets that they have been infected by their mothers. The way it is said in the streets is not a right one because there is stigma attached to it. They will, for example, tell the children their mothers were sleeping around and use all the rude words to try and make it her fault as well as to show how she invited the disease.”
In general, the participants suggested that parents more than other caregivers were reluctant to inform their children. They said, “it is harder for parents than those that are guardians to talk to the children.” Nonetheless, caregivers all agreed that parents would want to attend a program to help them talk to their HIV-infected children.
The caregivers in the focus group that was asked specific questions to elicit beliefs relevant to SCT expressed several positive outcome expectancies regarding disclosing. They said, “the child will no longer protest to take medication but understand that if it takes the medication it will stay healthy,” “the child himself or herself will follow-up and take the medication itself and ask for healthy diet,” and “increase their CD4.” The perceived negative consequences of disclosing were: “they will live in fear since they think they will die” and “they can take poison or all ARVs at once to try to kill themselves.” Questions also addressed barriers that building skill and self-efficacy could address. One thing that makes it hard to disclose is, “the child might ask the mother how she got it.” One thing that would make it easy is, “to meet with other parents who have HIV-positive children.”
Age 5 years was the youngest any child in the HIV-positive children focus group learned their diagnosis. The others learned at the age of 7, 10, 13, or 15. Only 1 said she learned her diagnosis from a doctor; the others learned from family members. They said they were told because they were “nagging their guardians as to why they are taking this treatment and when they will ever stop taking it.” The children expressed that they thought it would be better if they had been told earlier in their lives, specifically that it would be best to be told around age 5. They indicated that the reasons why the parents or other caregivers do not talk to children about HIV include not knowing enough about the disease, symptoms, diagnosis, and treatment and fear of stigma. Another reason they cited was that caregivers were “afraid that the children might not accept it and start doing the worst things.” They explained that by worst things they meant “suicide, becoming street kids or even stopping school to defy the parents or seeing no need in continuing to take medication as they will die anyway.” They concurred that “a parent should talk to them” rather than a stranger. They indicated that if the children “understand the reason why they need to take treatment, they would have fewer difficulties to take the medication.”