JUNE 3, 2010: When do we tell children they are HIV positive?

When do we tell children they are HIV positive?
A Ugandan draft policy recommending that HIV-positive children be informed of their status by the age of 10 has drawn mixed reactions from health workers.

The previous policy required parental consent to tell children under the age of 12, but the new policy allows health workers - with the support of parents and guardians - to disclose HIV status after the child has been prepared and an assessment of their ability to understand and deal with the condition has been made.

Dr Benson Tumwesigye, national HIV testing and counselling coordinator in the Ministry of Health, said the new policy was intended to improve children's adherence to their life-prolonging antiretroviral (ARV) medicines, which would be easier if they knew why they had to take the drugs.

Better adherence

"In my experience a child disclosed to at an early age copes better than those who get to know their status when they are teenagers. They easily adapt to the new lifestyle as adolescents growing up, and adhere better [to ARVs]," said Cissy Ssuuna, counsellor coordinator at the paediatric HIV clinic of the Baylor College of Medicine in the capital, Kampala.

"With some children - as early as at four years - they know something is wrong with them and ask so many questions about why they are taking drugs and their siblings are not taking them; they ask their parents when they can stop taking drugs."

Ssuuna stressed the need to involve parents and guardians as much as possible, and to ensure children were properly prepared to deal with the news of their HIV status.

A Ugandan study in 2006 [http://www.ncbi.nlm.nih.gov/pubmed/16791525] indicated a need for service providers to support caregivers in disclosing their children's HIV status to them, so as to ensure adherence to treatment.

Hard to tell

Another study [http://heapol.oxfordjournals.org/cgi/content/full/23/1/36], in 2008, said stigma linked to HIV was one of the main reasons disclosure to children was so sensitive. Parents also feared disclosing their children's status to them because it meant disclosing their own.

A lack of clear guidelines was another problem. "Counselling policy directors confirmed the absence of policy and training guidelines on the subject of parent-child disclosure," the study said. "Counsellors reported improvising, and giving inconsistent advice on this common concern of clients."

Many service providers were hesitant about adopting the new policy. "It is not a good thing because of stigma; some of these children do not understand, and they may boldly announce, 'I am HIV positive', in public places. They are not like adults who can evaluate what to say and when," said Norah Namono, public relations officer for Mildmay Uganda, an HIV treatment centre in the capital.

"Why should they say that children need to know their status when there are adults [who do not], like men who do not tell their wives?" one mother at the Mildmay centre asked. "There is no policy on partner notification; why should we sacrifice the children first?"

Ssuuna noted that disclosure, even to older children, could come as a shock. "The older ones cry because they come in confident that they have never had sex, not knowing that they acquired it [HIV] at birth," she said.

"The younger ones are partially disclosed to, telling them that they have to take their drugs religiously lest they fall sick because they have a chronic disease."

All the service providers IRIN/PlusNews spoke to said they would require more information and guidance before they could adopt the new policy.