Ignorance Threatens HIV Prevention and Treatment
(New York) - Children have the right to age-appropriate information about their HIV status and should not be the last to find out that they are HIV-positive, Human Rights Watch said on World AIDS Day, December 1, 2010. Human Rights Watch described its research in Kenya about the subject and called on the Kenyan government to provide guidance to health workers and parents on disclosure, which could start from the age of 6, taking into account the child's maturity and the specific clinical and social context.
Governments around the world need to create sound policies on supportive ways to disclose HIV status to children and adolescents as more children worldwide are tested for HIV and have access to anti-retroviral treatment (ART), Human Rights Watch said.
"Parents, caregivers, and health workers who avoid telling children about their HIV status can do a lot of harm, unwittingly," said Juliane Kippenberg, senior children's rights researcher at Human Rights Watch. "They can shatter a child's emotional and physical health and carry stigma about HIV to the next generation."
Human Rights Watch research in Kenya shows the disastrous effects of poor disclosure policies. Children who do not know they are HIV-positive may be less likely to take their medication regularly, which can lead to drug resistance and death. Children who belatedly find out that they are HIV-infected may be more likely to internalize stigma and feel betrayed by those who hide their status. If adults withhold such important information for years, children may sense a problem and live in great anxiety. Some children are confronted with the news of their illness through public comments from others, and experience trauma and depression.
Approximately 180,000 children in Kenya are living with HIV, and slightly more than 40,000 children are on ART. Most of these children have been infected all of their lives through mother-to-child transmission, yet parents and caregivers in Kenya often do not tell their children that they are HIV-positive until they reach adolescence. Human Rights Watch interviewed children between ages 8 and 14 who had not been told of their HIV status, as well as parents and other caregivers, health workers and counselors.
Under the Convention on the Rights of the Child, children under age 18 have a right to information about their own health. But Kenya's National Guidelines for HIV Testing and Counseling leave the responsibility for disclosure with the caregiver and do not allow health workers to disclose HIV-status to a child unless a parent or guardian has given permission. The guidelines permit health workers to inform children who are pregnant, married, or sexually active. In practice, though, sexually active children do not always disclose this information to health workers, and hence are not told if they are HIV-positive.
Denying older children information about their HIV status violates the child's right to information and privacy, and the child's right to voluntary, confidential HIV counseling and testing, Human Rights Watch said. It also compromises the child's ability to participate in his or her own medical care, an important part of the right to health.
"Many parents are reluctant to tell their children that they are infected with HIV," Kippenberg said. "They want to protect the child from the stigma they experience themselves, and mothers in particular may feel guilty for having infected their children or worry that their own status may become known."
Kenya should provide more support and information for parents about how to tell their children they are HIV-positive, Human Rights Watch said.
Kenya's guidelines only cautiously encourage health providers to "attempt to introduce age-appropriate information about HIV as early as possible" and to "offer to assist with disclosure in case difficult questions arise." Kenya's National AIDS/STD Control Programme (NASCOP) has developed good training material on child disclosure, but few health workers have been trained. NASCOP is setting up a committee to deal with the issues of child testing, counseling, and disclosure, a positive move, Human Rights Watch said.
"Accepting HIV is more painful when children find out late, particularly during adolescence," Kippenberg said." Children should be told about their HIV-positive status in a supportive manner from an early age, and counseled about prevention when they grow older."
Early disclosure is also necessary for prevention, Human Rights Watch said. Many adolescents start having sex before learning about their status, and they risk spreading the virus to others.
The World Health Organization has stated that "informing older children of their diagnosis of HIV improves adherence," to taking anti-retroviral medication and has recommended that children above age 10 should be involved in discussing HIV testing. It has also urged governments to provide guidance to healthcare workers about the process of informing a child of their HIV status, because "informing children and disclosing their HIV status to them is a process best performed with support from skilled health professionals." The American Academy of Pediatrics encourages disclosure of HIV status to school-age children.
Human Rights Watch called upon the government of Kenya to:
- Provide clear, accessible guidelines for disclosure of HIV status that recommend consideration of disclosure to children starting from age 6, taking into account each child's cognitive and emotional maturity, family dynamics, and the clinical context;
- Allow health workers to disclose HIV status to a child within these new guidelines if they judge the child to be ready, and if the child wants to know his or her status and has been appropriately counseled;
- Provide counseling for parents and caregivers at HIV testing and counseling centers to overcome their concerns regarding disclosure and guide the disclosure process;
- With the support of donors, train health workers at HIV testing and counseling centers on disclosure to children; and
- Ensure that HIV/AIDS and life skills education programs take into account the situation of children living with HIV in addition to prevention methods, and that the programs are carried out in a sensitive manner.
Nearly 90 percent of HIV-positive children worldwide live in sub-Saharan Africa. The barriers the Kenyan government faces in addressing the needs of children living with HIV and AIDS are similar to those other Eastern and Southern African countries confront. In recent years, important progress has been made in providing children with ART in Africa, with nearly 300,000 children now receiving the drugs there. However, close to one million children on the continent still do not get the life-saving drugs because they have not been tested for HIV, lack transportation or adequate food, or have poor family support.
Personal Accounts From Kenya:
(Names of children, caregivers, and counselors are pseudonyms)
"We had a 13-year-old boy whose father was alive and HIV-positive, but his mother died of HIV. The father stigmatized HIV. The boy was positive but did not know, and the father did not want to disclose. The boy came to us with a TB cyst and rashes.... ARVs [anti-retrovirals] eventually became available, but the boy never found out [his status], because his father and aunt never told him. The boy refused to take his medications. He died in 2009."
- Community counselor, Kayole, Nairobi, November 5, 2010
"My 5-year-old, Martha, is positive. She takes ARVs, but I tell Martha that she needs to take the drugs for a chest infection and also show her that I take the same drugs. Sometimes she doesn't want to take them and says that she's healed, or says, "Drugs, drugs, drugs," or "Why me only and not the others?" I have not received any training on disclosure and I do not know of any place to get this training. Community health workers have told me that I need to tell the child that she is positive but they have not given me a way to do so."
- Mother of Martha A., Kayole, Nairobi, November 5, 2010
"My son is 10 and was told by his teachers at school that HIV happened to people who had ‘bad manners'... He is HIV positive and I have been trying to slowly disclose, but it is difficult because of the wrong information he has gotten from the school. He was watching TV and saw someone drinking alcohol and said, ‘That man has bad manners, he will get HIV.' Then I asked him if he thought he could ever get HIV, and he said, ‘No Mom, I am a good boy I do not have bad manners.'"
- Hannah K., community health worker and parent, Nairobi, November 3, 2010
"My son David is 12, he doesn't know that he is [HIV] positive. He takes ART... He [thinks] that it [is] because he had chest problems. Sometimes he throws his drugs away. He is tired of taking drugs.... I have thought of telling him that he's positive, but I am afraid that he will hang himself or kill himself... David thinks that only adults have HIV and kids are not supposed to [have it].... I asked him what he would do if he was HIV positive and he said, ‘I will kill myself, I will take poison.' If you can come up with a program to educate kids on HIV, it will be better for me."
- Mother of David B., Kayole, Nairobi, November 5, 2010
"Two or three days ago Elaine found out that she was positive. She overheard some people here... talking about it... She heard that the medicines that she is taking are for people with HIV/AIDS.... For the first two days [after this] she refused to take them [the drugs]."
- Mother of Elaine, age 12, Eldoret, August 19, 2008
"I was surprised [about my HIV-positive status] but not upset, I take my medicines and I am healthy. It is better to know your status so you can avoid getting sicker and dying."
- James W., age 12, who was told about his disease by his mother, Kayole, Nairobi, November 5, 2010
"I felt very bad. I had no idea I had HIV. I didn't understand at first. I wanted to know that I will not die, that I can have a family and be loved. I have not told anyone at school, not even teachers. But it is better that I know, because I might be dead or very sick. I now have [HIV] positive friends, and I can talk and sit with other children at school because I feel better. Before, I was suffering alone, I was ashamed of my illness and I ate alone at school [due to fingernails breaking off, and other opportunistic infections]."
- Rose W., age 11, who was told about her status at age 9, and recently joined a child support group, Kayole, Nairobi, November 5, 2010
"I would say any time the child starts asking questions about why I am here, why am I taking these medications, is the right time to tell the child. [Disclosure] can be a gradual process.... I would say this can be from age 7 to 10. At the very least, a child above 10 should know their status. There is a gap in training in the country on how to do disclosure to children."
- Kenyan pediatrician, Eldoret, August 19, 2008
"There is a conflict of interest between the parents' needs and the child's needs, but we need to disclose before the child reaches adolescence because they run into very serious problems with adherence [to ART]... The problem once you get to into adolescence, they feel cheated if they are not disclosed. There is a loss of trust for adults in their lives, they are not sure what they can believe."
- Professor Ruth Nduati, associate professor of pediatrics at the School of Medicine, College of Health Sciences, University of Nairobi, November 12, 2010