Session 4: HTS for Children and Adolescents
Adherence for Children and Adolescents
ARVs have had a dramatic impact on the prognosis for children and adolescents living with HIV. Children and adolescents born with HIV or who have acquired it after birth are now growing up through adolescence and into adulthood. However, their survival is dependent on optimal adherence to the ARV medicines. In this section, we will focus on ART Adherence counselling for children and adolescents.
Learning Objectives
By the end of this section, you will be able to:
- Describe the role of antiretroviral medicines in the management of children and adolescents living with HIV.
- Develop strategies to address potential adherence challenges.
- Demonstrate an understanding of adherence counselling for children, their caregivers, and adolescents.
Learning Activities
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Knowledge Check (10 min)
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Soldier Game Part 2 (10 min)
Watch the video, “Soldier Game.” Think about the questions below.
CreditI-TECH Zimbabwe based on Soldier Game from Africaid Zvandiri, Zimbabwe- What do you do differently when you are discussing adherence with adolescent or child clients?
- How do you explain ARVs to children or adolescents?
- How do you explain adherence to children or adolescents?
- How will you apply what you learned in this video to adherence counselling?
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Susan and Mary Part 4 (10 min)
Recall from earlier parts of this case, Susan is 8 years old and has tested positive for HIV. She has been brought to you by her 15-year-old sister, Mary, who has tested negative. Their parents are both late and they are living alone.
Susan began ART 8 months ago. She missed her last appointment, which was 1 month ago. You send a message with the village health worker for Mary to bring Susan back to the clinic. They have now returned to the clinic. Your review of the clinic record shows that Susan completed her TB treatment. Her weight had been steadily increasing and she was back in school. You also note that there have been a few times that the clinic nurse documented Susan’s adherence to her ART as fair and that Susan was “tired of taking medicine”. Her weight 2 months ago was down to 20kg from 22kg.
Upon reviewing the laboratory data in Susan’s chart, you notice that she had a CD4 count drawn at her 6-month visit but there is no record of the result. Before meeting with Mary and Susan you check with the clinic nurse, who tells you to look in a large folder where laboratory test results are stored when they come to the clinic. After several minutes, you find Susan’s result and note the following:
- Baseline CD4 count: 410/CD4 % 21.
- Month 6 CD4 count: 330/CD4 % 18.
You bring this result to the attention of the clinic nurse who is very busy referring another client for admission. She quickly looks at the result and clinic record and says “Looks like she is not taking her ART correctly. You better talk to her and her sister”.
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Chenai (10 min)
Chenai is a 14-year-old HIV-positive adolescent who acquired HIV perinatally. Her auntie has raised Chenai after her mother passed on when she was 4 years old. Chenai does not know anything about her father.
She has been receiving care at the same clinic since she was born. In fact, she has had the same nurse! Over the years, the clinic has increased the number of children and adolescents who are HIV positive. They even started a peer support group that Chenai attends regularly. She likes going to the group. Everyone knows each other and what they are facing, unlike when she is at school and has to hide her diagnosis.
Chenai has been on ART since she was 6 years old and openly discusses the challenges she has had over the years with taking her medicines. She has been sick quite often and hospitalized for a variety of illnesses, most as a result of not taking her medicines correctly. But that all changed when she got older. Over the past 2 years she has not missed any doses and her laboratory test results have been good.
Living with her auntie has been good, but it seems like they are arguing a lot lately, especially about boys. Chenai wants to be like the other girls in her class who are dating and having sex. During one of the times that Chenai and her auntie were arguing, her auntie told her that she was going to send her to a boarding school where there are no boys. Chenai did not think she would really do it, but she did. Her auntie enrolled her in a school far away from her village. She arranged for a clinic near the school to get her medications and took her to meet one of the nurses before she moved into the school. Chenai cried when her auntie dropped her off and is very mad at her for sending her here. She misses her friends and thinks she will never find anyone she can be close to. She feels like she will have to be by herself and hopes the time goes by quickly.
You work at the clinic near the boarding school. You have several girls from the school who are HIV positive and today you are assigned a new girl, Chenai. You have a referral letter that provides a brief medical history, lists her most recent laboratory test results, and indicates that she was dispensed a two-month supply of antiretroviral medication. But according to the letter, she should have come to clinic a week ago for more medication.
Chenai tells you that she has not missed any doses of her medication. In fact, she came today since she took the last pills in her bottle yesterday. She tells you that she has always had pills left over and the pharmacist she had at her other clinic would give her a new supply on top of the ones left over.
The pharmacist was contacted. He gave the extra doses in the bottles back to her with a new supply. The pharmacist tells you that Chenai has had very good adherence for a long time. The laboratory tests confirm this.
Chenai has been sitting in the waiting area. When you bring her back to your office, she sits with her head down. She does not look at you when you ask her what is wrong. She tells you that she does not think she can continue to come to this clinic. She saw one of the girls in her school going in to see the nurse. “She saw me and I think she knows why I am here. I have been hiding my pills and do not want anyone at school to know I am HIV positive. I hear the older girls talking about not wanting to eat nor sleep near anyone who has any diseases. If they find out about me, I do not know what I will do.”
During the discussion, Chenai tells you that she felt the most comfortable when she was attending the peer support group sessions at her previous clinic. She was asked to be one of the co-facilitators for the group and found that she liked being able to share her experiences with living with HIV. Chenai asks when the peer support groups meet at this clinic and is told that they do not have such a group. You feel that individual counselling works the best with the adolescents coming to this clinic. Chenai is quiet again, and begins to think that this clinic is really not the right one for her. She feels more isolated than ever.
Chenai tells you that her daily routine is to take her morning dose of medication right after her breakfast. But on school holiday days or the weekend, she likes to sleep late and so she moves her time to later in the morning or right after lunch. For the evening dose, she takes it right after dinner. During school holidays, she doesn’t have a set time when she eats dinner.
Remember that when you are providing adherence counselling to an adolescent like Chenai, there are many topics to cover and techniques you can use. You want to empower Chenai to take control of her health and adherence. This is done through:
- Reinforcement of transmission routes
- Reinforcement of the importance of ARVs
- Reinforcement of the importance of adherence
- Illustration of the importance of adherence using the body mapping chart
- Sharing of testimonials from other teens (such as the book titled Red Ribbons and Roses, written by HIV positive adolescents)
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Tendai Part 2 (10 min)
Tendai is a 17-year-old HIV-positive adolescent who has been on ART since he was 12. He loves to hang out with his friends, staying out late and socializing. He has been known to drink alcohol with his friends. Clinic staff have seen him drunk. One staff member who lives in the same village as Tendai knows that his family is worried about his drinking and behaviour. Tendai’s mother has told this health care worker that she does not know what to do with him—he has changed and is “hard to manage”.
You have been managing Tendai for the past 6 months. According to his records, when Tendai first started ART, he faced many challenges including serious gastrointestinal side effects, elevated liver enzymes, and mild to moderate sleep disturbances. These were managed by changing some of the medications in his regimen, monitoring his laboratory results, and providing medication to relieve the side effects he was experiencing.
Other staff have told you that in the last 2 years Tendai has become increasingly upset by having to come to clinic. He has missed appointments and has been arguing with his mother about staying out with his friends and not doing well in school. There have been several times when Tendai came into clinic with flu-like symptoms as well as an outbreak of oral thrush, which was directly related to his poor adherence. His mother has come to the clinic to talk to the health workers, but you have not met the mother yet. You have talked to Tendai twice, but only for a short time since he was in a rush to get home.
Tendai is in the clinic early this morning and tells you that he needs to be seen. When asked if he is having a particular problem, Tendai tells you that he is “having a burning sensation when he goes to the bathroom and just doesn’t feel good”. You meet with him and give a prescription for antibiotics to treat a urinary tract infection. He appears upset as he is talking to you. “I don’t understand how this happened. I’ve been careful and have sex only with my girlfriend. I wear a condom when I’m inside of her. Could this happen from her kissing me down there? My friends all told me that oral sex was safe and the best way to avoid getting a girl pregnant. Maybe it happened when I had too many beers and the condom went on wrong. My girlfriend doesn’t know I am HIV positive and I can’t tell her that or she will leave me”.
When you ask Tendai about his adherence, he gives short answers, such as “I take my pills” or his adherence is “OK”. Tendai’s viral load tests in the past indicated that he was having adherence challenges.
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Factors Affecting Adherence (5 min)
We know that there are many challenges and barriers that children and adolescents face around adherence. Below is a table that lists barriers, some examples of the barrier and some strategies that you can try to address them. You may have other strategies that you use so if you do not see it on this list, it doesn’t mean you should stop.
Type of Barrier Examples Strategies to Address Barriers Health Service - Staff Attitudes
- Lack of information
- Transport costs
- Availability of medicines
- Transition from paediatric to adult services
- Address stigma with other healthcare workers
- Provide education
- Work with the team to keep up-to-date documentation on client visits to ensure stock is available
- Link to community support
Individual - Lack of knowledge
- Delayed disclosure
- Orphanhood
- Desire for conformity with peers
- Fear of stigmatization
- Loss of purpose
- Forgetting
- Depression
- Drug or alcohol use
- Recommend peer support groups, treatment buddies, support systems, and ongoing counselling
- Plan ahead for not being home
- Address any mental health issues, making sure that they understand to continue taking medication even when they feel well
- Use the Soldier Game to help understanding
- Give client choices
Family/Community - Changes of caregiver
- Absence of parental/caregiver support
- Cultural/religious beliefs
- Traditional medicines
- Lack of support
- Negative experiences of ART
- Help with disclosure
- Provide education
- Link to community support/CATS
- Provide family counselling
Medication - Pill burden
- Side effects
- Drug fatigue
- Past experiences of medication
- Daily reminder of HIV status
- Written and visual materials
- A daily schedule illustrating times and doses of medications
- Demonstrations on using syringes, medication cups and pill boxes
- Prepare them for possibility of side effects
It is important that you discuss barriers and ways to address them when you are conducting adherence counselling. It is a good idea to try implementing more than just one strategy and to provide positive reinforcement when your clients are doing well. Having an honest and trusting relationship with clients also has an impact on your ability to help them with adherence.
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Key Points (5 min)
- Adherence to care is central to the appropriate management of children and adolescents with HIV.
- Adherence to ARVs is one of the major counselling issues in the follow up care and support for children and adolescents with HIV.
- Adherence to ARVs is key to successful outcomes by achieving viral suppression and preventing medicine resistance.
- There are many factors which make adherence to ARVs difficult for children and adolescents.
- Counsellors have a vital role to play in the provision of adherence counselling for children and adolescents and their families.