Lazarus Mukhongo (CEF) having some light moments with Sada
Lazarus Mukhongo (CEF) having some light moments with Sada

From Anger and Denial to a Peer Advocate: Sada Kasimu’s Story

May 30 2018

Disclosure of HIV status is a delicate issue that must be handled with care. For children in particular, it is important that the official process of disclosure is followed. Unfortunately for 12 year old Sada Kasimu of Traditional Authority Liwonde-Machinga, the issue of disclosure was not handled well, and Sada was abruptly informed of his HIV postive results by the HSA doing the testing in March 2017, when he was 11 years old.

According to the World Health Organisation, “Disclosure of an HIV status is an important part of the process of living with HIV, and is crucial to the continum of HIV Care”( Guideline on HIV disclosure counselling for children up to 12 years of age, 2011). This is true for anyone living with HIV, but especially for children, given the complexities that must be taken in to account related to the child’s emotions, ability to understand the situation, ability to cope with stigma and discrimination as well as concerns about social support.

The Ministry of Health in Malawi has guidelines for paediatric HIV testing and counselling which specifically tackle issues of child disclosure. The guidelines encourage gradual disclosure where information is given to the child piece by piece so as to not overwhelm the child. The guidelines advise that “disclosure to a child should be regarded as a process not an event” (Guidelines for Paediatric HIV Testing and Counselling, 2007).

CRP Affack with Estele during a household consultation

Sada was tested during a mobile clinic exercise conducted by the area’s Health Surveillance Assistants (HSAs). Sada’s grandmother, Estele Namphinda, took Sada and his younger brother Chifundo to the mobile clinic, where HIV tests were conducted on both children. Sada had an HIV positive result while Chifundo tested negative.

“The HSA did not offer appropriate counselling when the result was given, and Sada did not take this information well; he resorted to violence,” explains Estele. “He beat me on the way home and when we arrived, he refused to enter the hut saying he would rather sleep outside because he had nothing to fear for he was already dead. I tried to comfort him with food but he threw it away.”

Days turned to months, and Sada’s anger did not subdue. He slept in the house but refused to go to the health facility where he had been referred for ART initiation. In September 2017, Sada started to get sick. He developed sores and mumps and experienced frequent diarrhea. Worried about her grandson’s state, Estele reached out to the area’s Community Resource Person (CRP), Affack Kasenda, for assistance that same month. Affack visited the household repeatedly and tried to reason with Sada explaining that the medication prescribed to him would make him better but Sada still refused to reason with the CRP.

In November, with consent from Estele, Affack escalated Sada’s case to his supervisor, Lazarus Mukhongo, a Community Engagement Facilitator (CEF) based at Namandanje Health Center. Lazarus and his colleague McGoffrey Golomani visited the Namphinda household the following day.

“The aim of our first visit was to build rapport with the child and the grandmother so that we get to know each other,” shared Lazarus. “We brought a ball with us and played football with Sada. We later sat down with him and illustrated how the security of a country works and what would be the repercussions if it were compromised. This seemed to excite Sada, so we compared this with the immunity of a human being. However, we did not tell him that we knew his HIV status.”

During the next visit Sada looked so relaxed. They played and talked and later the two CEFs gradually made their intentions clear. This time they talked about Sada’s immunity and how much danger he was putting himself in by not taking medication. They told him that they would arrange for him to go to the hospital and start taking medication. This worked and finally, on 4th December 2017, 9 months after Sada’s positive HIV diagnosis, he was placed on ART.

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The first weeks of taking medication were not a pleasant experience for Sada. He experienced nausea and was frequently vomiting. He also felt dizzy which forced him to stop going to school. Disappointed in the turn of events, Sada refused to take more medication. Estelle informed CEF Lazarus, who referred Sada to the facility once more and his medication was changed. Sada received more counselling and he continued with his treatment. The nausea and dizziness and recurring diarrhea stopped, and his sores began to heal. A month later, Sada regained his health.

“Before I started taking the medication, I was getting sick frequently and as such, I missed school a lot. I couldn’t even play with my friends and this made me sad, but now because of my new medication, I play a lot,” testified Sada, who is also now a member of the catchment area’s teen club – a support group for children ages 10 -18.

“I make sure Sada doesn’t miss his ART appointments. Since the hospital is far and Sada’s grandmother is old, I pick Sada up on my bicycle and take him to the health facility for checkups and medication. I also take him to the teen club every month,” shared CRP Affack Kasenda.

“Sada is now a healthy boy. He can now do everything a boy of his age is capable of doing. He no longer gives me problems when it is time to take his medication. In fact, I do not even remind him,” an overjoyed Estele shares.

“I put the medication in two different plastic bags and told him the blue one is for the morning and the black one for the evening. He takes them without being reminded. Actually, Sada has become an advocate among his peers at the teen club as he encourages them to go to the hospital whenever they feel sick so that they remain healthy and do not miss classes”.

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