Managing the disclosure process

Clinical description

• Explain to the parent that disclosure is a gradual process. Assure the parent that you will work

through this process together.

• Remind parents / care givers at every clinic visit that it is very important to talk to the child about

their HIV infection and ART status in an age-appropriate way.

• Don’t isolate the child behind a “wall of secrecy and silence”. Remember the child probably knows

more than you think.

• Never lie or make up stories about the child’s HIV infection and the drugs they are taking (e.g.,

misrepresenting ARVs as TB drugs or vitamins). Lies will eventually come out and undermine trust and make the child feel guilt, shame and will damage self-esteem and may lead to poor adherence.

• Ask parents at every visit how far they have come in the disclosure process.
• Encourage parents to talk directly to their child in the environment they feel most comfortable.

Offer to take part in the discussion if parents are uncomfortable doing this on their own.

Continuing ART 89 From age 5-7 years:

• Explain that the child has a germ that requires taking drugs every day to keep the germ ‘asleep’.
• Full disclosure can begin as early as 8-10 years.

By age 11-13 years:

• Add more information gradually. By age 11-13 years the child should know that s/he has HIV. Also,

all the following should have been explained:

o Touching, cuddling and kissing are safe.

o Sharing soap, towel, plates and cutlery is safe.

o Don’t share needles or razor blades. HIV and other diseases can travel in traces of blood and infect the other person.

From puberty / adolescence:

• Invite open dialogue about ‘teenage challenges’ that can get in the way of good adherence:

o Low self-esteem, pill fatigue, frustration about the need for ART o Conflicts at home / at school o Relationships o Alcohol / drug abuse

• Encourage to join an “ART Teen Club” where available. Provide extra support for patients

transitioning from a Teen Club to the adult clinic.

• Eligibility criteria for joining an ART Teen Club include:

o Confirmed HIV infection o Fully disclosed o Aged between 10 – 19 o Guardian consent

• Offer condoms and other FP methods; explain use on penis model; give at least 20 condoms
• Explain: Do not have penetrative sex without condom. HIV like other infections can travel in semen

and vaginal fluid and infect the other person.

• Explain: It is still possible for you to have children when you want to. The risk of passing HIV to your

partner or to your baby is very low if your VL is undetectable.

• Explain: Where to access STI treatment, family planning services and help in case of sexual assault.