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

  • Knowledge Check (10 min)

    1What are outcomes of poor adherence? Select all that apply.

    2Rutendo is a 14-year-old girl who has just been given ARVs and has been sent to you for counselling. In your discussion with her you tell her some important things she should remember when on ARVs. Which of the following are things you would mention? Select all that apply.

    3When you are explaining why adherence is important, what are some of the messages you might share with Rutendo? Select all that apply.

    4What are some of the reasons that adolescents lack motivation to adhere to treatment? Select all that apply.

    5What are the steps you need to take to work with a child or adolescent to achieve adherence? Select all that apply.

    6During adherence counselling, you want to ensure that the adolescent or child and caregiver receive adequate education. What are the points you need to cover? Select all that apply.

    7Assessing adherence includes which of the following? Select all that apply.

    8What are some communication techniques that you should consider when discussing adherence? Select all that apply.

    9What are some examples of good questions for probing ongoing adherence? Select all that apply.

    10As long as a child or adolescent is adherent, there is no need to discuss adherence again.

    11HIV positive adolescents on ART often have lower viral suppression rates when compared to adults.

  • Soldier Game Part 2 (10 min)

    Watch the video, “Soldier Game.” Think about the questions below.

    Credit
    1. What do you do differently when you are discussing adherence with adolescent or child clients?
    2. How do you explain ARVs to children or adolescents?
    3. How do you explain adherence to children or adolescents?
    4. How will you apply what you learned in this video to adherence counselling?
  • 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.

    1Which of the following ways can be used to monitor children on ART?

    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”.

    2What is the best approach to take as the person who has the closest relationship with both Susan and Mary and has known them the longest?

    3What do you ask when you begin to explore why Susan missed her appointment? Select all that apply.

    4What are some possible barriers which Susan may be facing that caused her to miss her appointment and a month of medication? Select all that apply.

    5During your counselling session you find out from Susan that she didn’t want to take her medicine because she was “tired of drinking medicine”. Mary thought that since Susan was doing better, it would not hurt to stop for a while and then start again later. How do you respond to this information? Select all that apply.

  • 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.

    1What approach will you take at this first meeting?

    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.

    2What are ways that you and the health care provider will know if Chenai is telling the truth and has not missed any doses of medication? Select all that apply.

    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.”

    3How can you help Chenai maintain her confidentiality in the boarding school and if she sees her classmates at the health center? Select all that apply.

    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.

    4What is known about peer support groups for adolescents living with HIV disease? Select all that apply.

    5Let’s return to the discussion about how Chenai has been managing her medications and her adherence. Since the referral form and pharmacist have said she has good adherence, it is not necessary for you to address this topic.

    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.

    6Based on what Chenai has told you about her adherence, should you provide her with additional adherence counselling? If so, what should be addressed?

    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)
  • 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”.

    1What are the possible issues that Tendai may face with regards to adherence? Select all that apply.

    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”.

    2What is your response to what Tendai has just told you?

    3What are the priority areas that you will address during this session? Select all that apply.

    4What are the effects of a STI on HIV that you should discuss with Tendai? Select all that apply.

    5What are examples of questions to ask Tendai that will best assess his alcohol use? Select all that apply.

    6How can you frame a message to Tendai that will alert him to the potential of a substance use problem?

    7What is the best approach to correcting possible misinformation Tendai has about STI transmission and sexual and reproductive health? Select all that apply.

    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.

    8Given Tendai’s history and current situation, what approach should you take today to address his adherence? Select all that apply.

  • 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.

  • 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.