It hit him all at once. A motorcycle accident, contracting tuberculosis and being diagnosed with HIV all in a matter of months.
First, it was the accident. Charles, 30 of Kampala, was hit by a motorcycle while crossing the road in November last year. He was bandaged and given crutches because his leg was badly injured. He was then tested for HIV and learned he was positive at Mukono Health Centre. When asked about why he decided to get tested he responded, “I wanted to know more about my life.”
He suspected that he was negative, but once the results came back that he was positive, he said he felt nothing. “There was nothing I could do. They counselled me, and I didn’t feel bad.”
The counsellors at Mukono informed Charles about HIV and adherence, making sure he knew the importance of taking his medicine at the same time every day. They explained to him what HIV was, although he had also heard about the virus from elsewhere. “I knew from radio stations and televisions before,” he said.
Charles then contracted tuberculosis, an opportunistic disease that is often associated with HIV positive persons. He was bedridden, too weak to continue his work as a painter. He became a part of the Namugongo Fund for Special Children (NFSC) where his CD4 count was recorded at 58. He was immediately put on anti-retroviral medication (ARVs), provided by NFSC.
Nurses and counsellors from NFSC visited him three times a day, providing him with ARVs and anti-tuberculosis medication. At first, the medication’s side effects were so bad that every time someone came to give him his medicine, he was convinced they were trying to kill him. After talking with them on a daily basis, he understood that these medications were meant to save his life. “They counselled me and said that some people have this [HIV]. It’s not me who is the first to have it,” he said.
The ARVs began to work and Charles is just now starting to feel better, after nearly seven months. His mother has stayed with him to help while he has been sick. He is still too weak to work and can only manage to tidy his bed.
Today, NFSC counsellors still meet with Charles to continue to speak with him about adhering to his medicine and any other issues that may come by living positively.
Although he is finding it hard to get back on track, Charles still has hope.
“I want to live a lonely life,” he said. “I chose not even to marry. I want to do my jobs. Maybe have a baby. A counsellor told me, even if I am positive I can get a negative baby. If I don’t get a baby, it’s God’s wish.”
It is clear from what the counsellors say, that Charles might not have come this far without their help.
“I don’t think he would survive without counselling,” Lovincah Nakayinza, a counsellor at NFSC says.
The role of a counsellor
A counsellor’s primary goal is to listen to the patient and promote adherence, disclosure and prevention. Below are the things counsellors take into consideration when doing their job.
1Clear information. Betty Nabukeera at AIC explains the necessity for the patient to understand what is going to happen to a person once they are diagnosed with HIV. “We are precise and clear and listen to body language to understand what a person is trying to say,” she said.
2Signing of contracts. Clinics such as AIC and IDI provide contracts for patients to sign before starting treatment. At the IDI, patients sign a contract that contains statements that say “I understand that antiretroviral drugs do not cure HIV/Aids and I remain HIV positive even when taking the drugs.” Clinics are efficient and clear when explaining to patients what exactly they are going to be going through medically and perhaps socially. This can be a shock to patients who may think that ARVs are the cure to HIV, when in fact, they are not. Clinicians make a profound effort to explain that the HIV disease is something one will live with for the rest of their lives and the medication is also for the rest of their lives.
3Give as much information. ART information is essential to adherence which can prevent someone on first-line ARVS, which are less expensive and more widely available, from being on second-line drugs, which are more expensive and harder to come by.
When doctors and counsellors are not enough, IDI and Saint Francis Home Care provide another outreach for clients. IDI has a “friends council” which consists of HIV positive volunteers to help friends. They provide “health talks” in the mornings and afternoons, which provide information about who to speak to and how to act when in the clinic About health issues.
4Use a ‘peer’. Saint Francis Home Care also has something similar to the friends council, called community health workers, which consists of experienced patients who are able to speak with clients about issues they may have. Counselling on any spectrum, whether it is from a professional or a fellow positive friend, can help others cope with their status and way of living.
Paul, a volunteer who acts as part of the IDI Friends Council, said that “all members are trained either through the IDI or through other organisations like The Aids Support Organisation. If we cannot help them, then we refer them to a professional counsellor.”
Friends bridge the gap so more people feel comfortable to talk about their situation. The thought process is that it makes clients feel more comfortable speaking with someone who is also HIV positive and may be of the same age, religion or tribe. Clinics hire a variety of professional counsellors based on their demographics to give the procedure a More familiar feeling.
5Abide by the ethics code. All employees must abide by certain ethical codes determined by the clinic or their professional groups. Doctors must register and act by the Uganda Code of Ethics under the Uganda Medical and Dental Practitioners Council. “We are ethical and promote public health,” Dr Katumba Ssentongo Gubala, registrar of the Uganda Medical and Dental Practitioners Council says. “Ethics is a serious obligation [for doctors] because you are putting the patient at risk and you must protect the patient.”
Counsellors and all other employees at clinics such as IDI must accept their own code of ethics. “All employees sign a document of confidentiality when they start to work here,” Dr Rosalind Parks-Ratanshi, head of prevention care and treatment at IDI, said.