How do you tell your child you

More than three decades into the HIV epi­demic, some con­ver­sa­tions haven’t be­come any eas­ier. This is one of them

Mail & Guardian - - Health - Kris­ten van Schie

Nokuthula* called her el­dest daugh­ter into her bed­room. Her four kids of­ten joked that this was her “court­room”. When­ever some­body was beck­oned, they knew they were in for a se­ri­ous talk­ing-to. “We’re go­ing to court,” they would laugh.

But the house was quiet now. No­body else was around.

Nokuthula and her then 21-yearold sat on the edge of the bed, a moun­tain of scat­ter cush­ions piled up be­hind them.

Nokuthula felt ner­vous, emo­tional. For 10 years she’d held on to the secret she was about to let out, and she had no idea how her first­born — who had just started dat­ing — would take it.

“In this world, we have this dis­ease you can catch when you sleep with some­one,” she started. “But I have peo­ple who have helped me un­der­stand what this thing is. I’m okay with it. I can live with it.”

Con­domise, she ad­vised her daugh­ter.

“She was so cool,” Nokuthula, 42, re­mem­bers now. “It wasn’t easy but she un­der­stood. She said she had no prob­lem with it. As long as I went to the clinic and took my pills, she would sup­port me.”

But three years on, it’s a con­ver­sa­tion Nokuthula can’t quite bring her­self to re­peat with her youngest daugh­ter — the daugh­ter she was preg­nant with when she was first di­ag­nosed.

Before pre­ven­tion of mother-to child-trans­mis­sion pro­grammes were in­tro­duced in South Africa in 2002, up to 40% of ba­bies born to HIV-pos­i­tive moth­ers con­tracted the virus before, dur­ing or shortly af­ter birth. To­day, just 1.4% of in­fants born to women liv­ing with HIV be­come in­fected with the virus.

Nokuthula’s 12-year-old, born HIV neg­a­tive, has seen her mother tak­ing med­i­ca­tion but hasn’t asked any ques­tions about it. Yet.

“I think she thinks it’s for my arthri­tis,” says Nokuthula. “I don’t think I can talk to her right now. Maybe when she’s 16 or 17.”

Nearly half of the es­ti­mated seven mil­lion HIV-pos­i­tive South Africans are now on an­tiretro­vi­ral treat­ment, ac­cord­ing to the United Na­tions Joint Pro­gramme on Aids. But more than three decades into the coun­try’s HIV epi­demic, many par­ents like Nokuthula still strug­gle to tell their chil­dren about their sta­tus.

About 70% of par­ents liv­ing with HIV have dis­closed their sta­tus to their chil­dren, ac­cord­ing to a large na­tional sur­vey con­ducted by the South African Na­tional Aids Coun­cil in 2014.

But the study, the first large-scale re­search to look at the stigma still at­tached to HIV, also re­veals how dif­fi­cult it is for many par­ents to break the si­lence. Among the al­most 10 500 peo­ple sur­veyed, nearly one in four peo­ple with chil­dren ad­mit­ted they hadn’t told them.

Bridg­ing that gap is where Tam­sen Rochat comes in.

“The epi­demic is evolv­ing,” she says. “We need to ad­dress and re­spond to the par­ent­ing needs of this rapidly grow­ing pop­u­la­tion. Sup­port­ing par­ents to com­mu­ni­cate and ed­u­cate their chil­dren about HIV is cen­tral to that.”

A chief re­search spe­cial­ist at the Hu­man Sci­ences Re­search Coun­cil, Rochat to­gether with a team from the African Health Re­search In­sti­tute in KwaZulu-Natal de­vel­oped a pro­gramme called Amagugu to sup­port HIV-pos­i­tive moth­ers in talk­ing to their chil­dren about their sta­tus.

“The med­i­cal pro­fes­sion’s come a long way in be­gin­ning to un­der­stand chil­dren’s psy­cho­log­i­cal ca­pac­ity,” says Rochat.

“Over the last three or four decades, we’ve seen more and more re­search that shows that from nearly as young as six chil­dren have a ca­pac­ity to un­der­stand per­haps not that death is per­ma­nent, but the ba­sic bi­ol­ogy around ill­ness.”

Now, Rochat says many psy­chol­o­gists rec­om­mend that par­ents liv­ing with se­ri­ous ill­nesses rang­ing from HIV to can­cer be open with their chil­dren from as early as pos­si­ble in com­mu­ni­cat­ing what’s hap­pen­ing to their bod­ies.

But for par­ents faced with hav­ing the con­ver­sa­tion, it’s a daunt­ing task. What if they ask how I got it? What if they tell some­one else? Why do they even need to know?

‘You have to look at a per­son as part of a net­work of so­cial re­la­tion­ships,” says Wits Univer­sity de­vel­op­men­tal psy­chol­o­gist Linda Richter.

The di­rec­tor of the univer­sity’s Cen­tre of Excellence in Hu­man De­vel­op­ment, Richter says that al­though fam­i­lies are on the front­line of the HIV pre­ven­tion fight, the fo­cus has tended to be on treat­ing in­di­vid­u­als “as if one’s health sta­tus, one’s sense of the fu­ture and the sac­ri­fices one has to make are un­re­lated to other peo­ple”.

But a par­ent’s di­ag­no­sis af­fects the en­tire house­hold.

Ado­les­cents who have lost a par­ent to Aids-re­lated ill­nesses or are in the care of adults bat­tling th­ese kinds of con­di­tions are more at risk of ex­pe­ri­enc­ing men­tal health prob­lems, feel­ing iso­lated from peers and even en­gag­ing in trans­ac­tional sex, re­veals 2011 re­search pub­lished in the journal Na­ture.

Mean­while, care­givers liv­ing with the virus also face their own bat­tles. More re­cent re­search re­veals that HIV-pos­i­tive par­ents may be more at risk of de­pres­sion and anx­i­ety.

And chil­dren can pick up on this from a very early age.

“Hu­man be­ings are built to re­spond to stres­sors,” says Richter. From as early as just 20 weeks old, she ex­plains, a foe­tus is re­spon­sive to shocks in its en­vi­ron­ment. “It’s called still­ing — if there’s a loud noise like a gun­shot in the house, some­thing that will shock the mother, that stress re­sponse will hit the baby and it will still, the me­tab­o­lism will slow down.”

A two-year-old tod­dler can feel em­bar­rassed or shy, and no­tice when oth­ers are anx­ious or sad. “They know when a par­ent is an­gry and that they must be still and quiet,” says Richter. “They’re pick­ing up the emo­tional tone of a house­hold very quickly.”

By the time they reach pri­mary school, chil­dren are able to start piec­ing to­gether con­cepts about ill­ness and mor­tal­ity — and this was the age group the Amagugu in­ter­ven­tion tar­geted.

“We call them lit­tle sci­en­tists at that age,” says Rochat. “They have th­ese radars: even if you man­age to hide your med­i­ca­tion and you have th­ese ex­trav­a­gant sto­ries about where you go once a month when you have to visit the clinic, they will ex­pe­ri­ence some shift in you — and that’s what we be­lieve drives the poor men­tal health out­comes in chil­dren.”

The con­ver­sa­tion was not go­ing well. Ad­mit­tedly, No­musa hadn’t picked the best mo­ment. But with their fa­ther ly­ing on what the whole fam­ily had come to as­sume was his death bed, she wanted her two teenagers to know that she also had the virus in her body — and that she was fine, healthy even. Ev­ery­thing was go­ing to be okay.

Her daugh­ter, then 19, sat there in dis­be­lief. Her 17-year-old son got up and walked out. “Was it true, Mom?” he asked her when he fi­nally came home the next day.

Ac­cord­ing to the health depart­ment’s HIV dis­clo­sure guide­lines, telling a child about one’s own HIV sta­tus is a process that should start as early as pos­si­ble, pro­gress­ing in de­tail as a child’s ca­pac­ity to un­der­stand the virus grows.

A five-year-old can grasp the con­cept of germs and that they need to take med­i­ca­tion daily — what the guide­lines call “par­tial dis­clo­sure”.

Choos­ing to tell: (Clock­wise from above) Nokuthula dis­closed her HIV sta­tus to her old­est child but can’t quite bring her­self to tell her youngest yet; Zanele’s 13-year-old son Sakhile knows her staus and says it helps him feel bet­ter; No­musa’s own dis­clo­sure to her chil­dren was prompted by their fa­ther’s sick­ness — she wanted them to know she was on treat­ment and would be okay; and coun­sel­lor Sa­muke­lisiwe Dube says deal­ing with stigma is a big part of help­ing moth­ers talk to their chil­dren about liv­ing with HIV.

Pho­tos: Made­lene Cronjé

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