Liseli was excited to be selected at the prestigious Girls Technical School. She scored the highest marks in the grade 9 examinations and was glad her mother was finally going to let her go to boarding school. Before departure, she had a one on one discussion with her mum on whether she was ready for people to know her HIV status as being in boarding school meant not so much privacy. Liseli lied to her mum that she didn’t mind since it was a girls only school and that she was ready for her new friends to know. Deep down, she planned to be taking her medication in secrecy. Unknown to her, a few girls in the dormitory had noticed that she always took something in the night as she fidgeted with a touch light and they begun to spread rumours that she was into satanism.

Arnold was living with his grandmother after the death of his single mother. One day, as he was asleep on the couch, an auntie from his dad’s side came to visit and they started discussing his health status. Arnold, who was in grade 7 knew a few things about HIV and as he listened to the conversation, whilst pretending to be asleep to avoid cooking lunch for the visitor, he overheard his grandmother talk about ARVs and how difficult it was taking him to the hospital and needed support due to her age. “So those medicines I take for my heart are actually HIV drugs,” he was in shock. For as long as he could remember, he had always been on heart medications and needed frequent visits to the hospital where blood tests would be done.

Children born with HIV live normal lives and grow up into adolescent and adulthood. As these children are growing, they reach a point where their caregivers or parents need to inform them of their status and they will in turn make a decision on whether to disclose this information with friends or close family members. Caregivers on one hand tend to not be so sure as to whether to disclose the positive status of the children due to fear that there would be negative consequences such as psychological trauma or stigma which can come from the children’s friends or worse if the child develops self-stigma. World Health Organisation regards adolescents as individual from 10 to 19 years old. Disclosure of HIV status is not a onetime event but a process that involves on-going discussions about the disease as the child matures cognitively, socially, emotionally and sexually.

When it comes to disclosure, there is full disclosure that provides full information and knowledge about HIV. Complete non-disclosure is when there is secrecy around diagnosis while accidental disclosure is informing the child or adolescent without preparing them. This is usually done unintentionally when for instance the matter is being discussed by adults and the child overhears. Deception is ascribing the adolescents condition to a different illness such as a caregiver telling the adolescent that he/she has a heart problem when it fact it’s HIV.
The importance of disclosing the HIV status to an adolescent is that this individual is growing and developing cognitively and has the right to protect him/herself and stay healthy. Adolescents who know their status adhere to treatment better and take responsibility for their own care. Adolescents are slowly getting into a sexual age and need to have reproductive health education.

Health professionals have a serious task of ensuring they discuss with care-givers how much information has been shared with the infected adolescent and highlight the importance and benefits of disclosure. The potential barriers to the disclosure must also be discussed. The care-giver must be prepared to handle questions that the adolescent might have. Caregivers must be taught that as they initiate partial disclosure, an adolescent living with HIV must be made to understand why he/she attends the clinic and takes medication. Caregivers must be able to explain that ARVs help germs to sleep, keep people healthy and strong and stop new sicknesses. They need to explain that ARVs may change from time to time and that blood tests will be done every now and then to check on the good cells.

The benefits that care givers or parents experience when they disclose the status to the adolescent is that they no longer have to maintain secrecy and they can openly talk about the condition with the child and others who can provide support. To the adolescent, he or she gets to have clarifications over the misconceptions about HIV and can get support from peers who are going through the same.

With all manner of HIV disclosure, it may lead to stigmatization, discrimination or rejection. The adolescent may experience emotional difficulties such as sadness, rebellion or anger. He/she may blame parents for infecting them or may develop self-stigma or conclude that their life will be short and begin to constantly think of death and live in fear.

The adolescent needs to be asked how he/she is feeling since disclosure and how they are coping within the family. Enquiring on how they are faring at school is also very important and to find out if they have shared the information with anyone else at school and if the answer is yes, how did these people react. Find out how their sleep is since the disclosure to know how it has impacted them mentally. Reinforce concrete examples of positive living with HIV, discuss stigma and provide support. Discuss issues of transmission through sexuality and provide examples of positive parenthood.

Sometimes a caregiver/parent may be worried that the child is too young or not mentally ready to know their status, professionals in medical centres are able to assess the child’s cognitive and emotional ability to understand and maintain confidentiality. And if the parent is worried that they will be blamed for the transmission of the infection, continuous counselling to the parents can be given by professional counsellors to alleviate the guilt. Health care teams assist parents or care givers to focus on the other benefits of disclosure such as enhancing adherence to HIV care and empowering the child.

There is need to offer support to adolescents if they are to disclose their status to friends or at school. It’s important to note that disclosure is a positive experience for teens but requires preparation prior to the actual disclosure event. The reasons adolescents disclose at school is that it improves support and takes away the stress of taking medicines in secrecy and at the same time empowers others to get tested.

We must remember that HIV is a virus that lives in the blood and doesn’t define who one is. We can accomplish goals and dreams and what is important, is that we accept the status and live healthy positive lives.

Seek help when in need, visit a counsellor near you!

Any names or resemblance to actual persons in this article is purely coincidental

About the author

Aka Monde, is a licensed Professional Counsellor who holds a Master of Science in Counselling from the University of Zambia. She believes in the adage “a problem shared, is a problem half solved.” Speak to your pastor, church elder, elderly family member or see a professional counsellor when in need.

Email: [email protected]