Stakeholder Engagement Unveils Adolescent Perspectives on Intensive Adherence Counselling to Improve Viral load Suppression in Uganda.
By Elinor Wanyama Chemonges- Stakeholder Engagement Lead EAPOC -VL study
The 95-95-95 UNAIDS strategy to end the HIV/AIDS pandemic by 2030 stipulates that 95% of the people who are living with HIV know their HIV status, 95% of the people who know that they are living with HIV be enrolled on the lifesaving antiretroviral treatment, and 95% of people who are on treatment be virally suppressed. Despite great success so far, challenges exist in achieving viral load (VL) suppression in 95% of people living with HIV on treatment, especially among children and adolescents.
In Uganda, when one is found to have unsuppressed viral load, they are immediately recommended for intensive adherence counselling among other interventions. This is often done by professional counsellors and further reinforced by interventions by clinicians.
Youths living with HIV in the EAPOC-VL study with a particular focus on the UVRI intervention sites were engaged through a series of workshops. The aim was to gather their perspectives on viral load suppression to have an in-depth understanding of the challenges, gaps and recommendations that could be implemented to improve effectiveness of intensive adherence counselling.
Intensive adherence counselling often takes the form of one-on-one discussions between a counselor and the young person with the counsellor taking the lead and adopting a lecture model.
It was however revealed that counselling needs to be multilayered, involving the counsellor, clinicians, treatment supporters/ family members, and peers. The various players engage the youth at different times reinforcing the same message. The young people also recommended some methods of passing on the messages through various approaches as opposed to lecture models.
Youths acknowledged that sometimes they do not tell the whole truth to the counselor for fear of being rebuked, failure on the part of the counselor to appreciate the realities that youths grapple with, and stereotypes.
Preferred methods for passing on information.
Whereas intensive adherence counselling adopts lecture methods, youths preferred drama/short skits/plays, songs, and social media messaging. Young people love music and drama, and this method can be used to communicate messages on HIV in a way that captures their attention. It is even better when the young people participate in the drama or music performances. The message is better understood and retained for a long time.
“Taking part in singing or taking part in a play, you cannot forget that skit or the message being communicated. If you just listen to the drama/skit you can forget but if you take part in the skit, I don’t think you can forget.” Adolescent in TASO- Mulago
One-on-One Counselling Sessions
Individual counselling sessions are very effective because they address issues that are relevant for the adolescent or young person. Young people sometimes feel shy to fully express themselves in public. An adolescent explains thus- “Like me, most of the things I have learnt, I have learnt them when I have been called and talked to individually” Adolescent.
One-on-One counselling is also more effective when the counsellor is respected by the adolescent. Healthcare workers tend to be respected and their messages taken seriously by adolescents. “When it is the nurses that have called me, and they teach me, that is when I have learnt most.” Adolescent.
“As an individual, when you sit with Dr. P and she talkes to you as an individual, when you have a question, you ask then she responds. Then if you haven’t understood something you tell her you haven’t understood that and again, she explains until you get it”. Young person – TASO Mulago
Adolescents enjoy the company of peers and take their messages to heart. When a person they easily relate to says something, they listen. “The things I have learnt, I have learnt from my friends. I have learnt from meetings with other young people organized here at the clinic.” Young person.
“Because we are in our group, we understand each other. We speak a language we all understand.”
Peer Educators have been recognized to be effective communicators of HIV messages to young people. They form part of the multidisciplinary teams that offer services to the young people living with HIV that receive care and treatment from The Aids Support Organization (TASO).
Challenges/ Gaps/ shortfalls in the existing communication methods
Judgmental attitude in professional counsellors
Youths revealed that counsellors can sometimes be judgmental, hence making the youths shun their services or listen but not pay keen attention to what they say. In some instances, the young people feel detached and feel that there is a wide age and social gap between the counsellor and the young person. The following narration from a young person in TASO Mulago alludes to this.
We are sent to counselors; however, the fact is that we sometimes fear them even before we reach them especially when we know that we are not adhering to what they tell us or are not taking our medication well. But there is what they call Peer educators, fellow youths, when I go to a peer educator like J, I will tell him everything. We discuss topics such as sex, alcohol, drugs, work etc. and he will not mind listening to me. I can even ask him for condoms, but when you go to a counselor and ask for condoms, they get surprised and can ask - “even You? A born again - saved girl? You get it?”
“When you go to see a counsellor because you have a high viral load, they make you feel like you have committed a crime.” An adolescent at TASO Mulago
“If you dare get pregnant, hooo its like you have a crime you have commited.” Young person, TASO Mulago
Conflicting messages from healthcare workers and family members /neighbors
Family members are assumed to be available treatment supporters however on some occasions, they discourage and demoralize the young people living with HIV through their behaviour, attitudes, and negative speech.
“I often overhear neighbors referring to me as a moving corpse because they know that I have HIV/AIDs and this sometimes disturbs me.” Young Person, TASO Jinja
“Me, whenever I came here (at the clinic), I would cry because my grandmother, mummy, aunt - all they would say was – “we are going to die”. I would feel that I do not fit in them – (their company). For me after counselling, I would see myself living a long life, giving birth, and fulfilling my dreams. So, I would get confused and ask myself so many questions.”
Peer pressure and making wrong choices.
During counselling adolescents and youths are discouraged from consuming illicit drugs and alcohol when they are taking ARVs. However, they face similar challenges of peer pressure like any other youths. The temptation to take alcohol and drugs is real. One youth admitted to taking alcohol and was quick to mention that whenever he takes alcohol, he does not take his ARVs. Inconsistencies in taking medication is one of the explanations for failure to suppress the HIV viral load.
HIV Stigma
Stigma is a challenge especially for young people taking ARVs. They take their medication in hiding because they do not want their peers or people around them to know that they are on treatment for HIV/AIDs. Employed youth often find themselves on shift contracts working on alternate day and night shifts. They therefore fail to maintain a consistent time of taking the ARVs and they do not want to be seen in possession of ARVs by their workmates. Because I take my medication at 9.00pm, whenever I am on night shift which starts at 7.00pm, I do not take my ARVs. I cannot stop operating the machine to go and take medicine. Besides, I do not carry medicine in case my workmates find out that I am on ARVs”.
The above revelation from the young people is testament to the fact that intensive adherence counseling needs to be multidisciplinary and multilayered adopting a life-long approach. Counselling should go beyond adherence to medication to exploring how the youth can navigate challenges and stigma. Peer Educators are instrumental in getting the messages across in a simple way because they too faced similar challenges and overcame them. Other stakeholders like family members would benefit from trainings to help them support the youths. Lastly, support to disclose their status and use of multiple methods of messaging is vital to effectively counseling young people.
