DEVELOPING TREATMENT ADVOCATES AMONG CHILDREN LIVING WITH HIV by Jeyapaul Sundar Singh

DEVELOPING TREATMENT ADVOCATES AMONG CHILDREN LIVING WITH HIV THROUGH TREATMENT LITERACY SUPPORT GROUPS by

With support from

Dedication This module is dedicated to all children of VETRIKOOTAM (Advocacy group of children living with and affected by HIV) and children of the Nalam Child Development Center in Namakkal, Tamilnadu

Developing Treatment Advocates among Children living with HIV through Treatment Education

Contents Acknowledgements Preface Session 1: Getting to know one another Session 2: Facilitating trust and support Session 3: Facilitating trust and support continued Session 4: knowing myself

4 5 6 9 11 14 16 20 24 28 32 34 37 40

Session 5: Basics of HIV and AIDS Session 6: Immune system, HIV and Treatment Session 7: Lifecycle of HIV and ART Session 8: ART Adherence and Drug Resistance Session 9: ART and Side effects Session 10: Nutrition and Positive living Session 11: Understanding OIs and preventing them Session 12: Advocating concerns and issues affecting children Annexure 43

Developing Treatment Advocates among Children living with HIV through Treatment Education

Acknowledgements We thank all the children living with HIV in Namakkal district, without them this module would not have evolved. We thank VETRI KOOTAM for having contributed with suggestions and comments in further improving the module content. We thank the staff and volunteers in helping us reach the children and following them up on a regular basis to ensure that the training has made significance in the lives of children With all gratitude we thank and acknowledge the support of HIV Collaborative Fund and ITPC-India in supporting us to make this module and pilot the application of the module.

Developing Treatment Advocates among Children living with HIV through Treatment Education

Preface This module has been developed with children in facilitating adherence through support groups. As support groups are a potential source of encouraging well-being the same medium has been effectively used to develop advocates among them. The module has been piloted during the project period with the children group in Namakkal District in Tamilnadu India and suggestions have been included at the end of the sessions. Children have played a major role in shaping the module to be suited well for children.

Developing Treatment Advocates among Children living with HIV through Treatment Education

SESSION 1: GETTING TO KNOW ONE ANOTHER Objectives

 To facilitate an introductory meeting and know one another by names  To set ground rules for the group

Session Outcome

 At the end of the session children would know one another’s names, able to trust and relate with one another and have a set of rules developed by themselves to follow through out the group meetings

Time Taken

1 hour 30 minutes

Materials Required

Charts, Sketch pens, Old newspapers and Magazines

Mistaken Identities 15 min

ACTIVITY ONE 1. This activity is most suitable when the children do not know each other. Make name tags with Large letters for all children. Use first or familiar or pet names only. 2. Distribute the name tags to the group, making sure that no child gets his/her own name tag. 3. Let the children mingle and find the right person, exchange names and where they are from. 4. Cards should be easy to read and colorful so that the children can read the cards from a Distance, mingle easily and meet people. 5. If some children know each other and others do not, a pet name or a second name may be used for identification

Developing Treatment Advocates among Children living with HIV through Treatment Education

7 Mime an Interest 20 min

Bouncing ball game

ACTIVITY TWO 1. The children form a circle and think of a hobby, sport or some other activity they like which they Can mime. For example, a child who likes to play drums can mime it or a child who likes cricket can mime that. 2. Encourage the children to mime different hobbies so that the miming performances are not duplicated. This will create variety and the children will enjoy guessing. 3. After each person has mimed in front of the rest of the group, the group is asked to remember each other’s mimes. The facilitator may join in the game with the children. 4. The game starts with one person clapping hands and then saying the person’s name and miming him or her. That person now claps, says another person’s name and mimes him or her. A person, who mixes up or forgets the name of the person and the mime, is out. Any child who remembers the name and the mime begins the activity again. ACTIVITY THREE

15 min

In this activity, children are made to for a circle and from one end, a child throws the balls calling out a name, that child should then catch the ball and in turn throw the ball and call out another name. This will go until all the names are called out. Then the facilitator throws another ball and the process continues as the first one.

The sheet game

ACTIVITY FOUR (OPTIONAL)

10 min

How does it work? o Participants are divided into two teams. o The teams are separated by a large sheet, which can be held up by two facilitators. o Each team chooses one participant to stand in front of the material, facing the other team behind Developing Treatment Advocates among Children living with HIV through Treatment Education

8 it. o On the count of three, the sheet is lifted and the two players facing each other have to say the other playerâ&#x20AC;&#x2122;s name as fast as they can. o Whoever says the correct name first can take the other person onto their teamâ&#x20AC;&#x2122;s side. o The objective is to get as many people as possible onto your team.

Ground rules and expectations 45 minutes

ACTIVITY FIVE How to do it? In this the children are divided into groups of 5 and are asked to prepare ground rules using old news papers and magazines. This allows children to explore the rules in a creative way and provides a platform for all children to participate. Then the groups present the rules prepared and finally one big chart with ground rules for the entire group is drafted. As an agreement to follow the ground rules, children sign the chart.

Developing Treatment Advocates among Children living with HIV through Treatment Education

SESSION 2: FACILITATING TRUST AND SUPPORT Objectives

 To facilitate trust and support towards each other

Session Outcome

 By the end of the session children develop a sense of trust amongst the group members and also support one another

Time Taken

1 hour

Materials Required

Charts, Sketch pens

Secret Admirer 15 minutes

Naming the group 15 minutes

ACTIVITY ONE o Write each child’s name on small pieces of paper and put them into a box. Each child picks up one chit and reads the person’s name. If someone gets his or her own name, change the chits. The child must not disclose whose name it is. o On one wall, place a chart and write, “Someone admires you very much!” o Give cards to each child, who must write the name on the chit and one nice thing they like about that person. Those who cannot write may draw. Collect the cards and paste ACTIVITY TWO Here the children will develop a name for the group. To derive a common consensus in naming the group, children will go through a voting process in naming the group. This makes children own the group as their own.

Developing Treatment Advocates among Children living with HIV through Treatment Education

10 Life boat game 30 minutes

ACTIVITY THREE The children stand in circle. The facilitator will call out numbers and children should form groups in that number. So the activity will start with children moving in circles calling out the local fishermen song. Then the facilitator will call out the number and the children will forms groups within that number. The game continues till the last person is out. Following this the facilitator reviews with the group on what they learnt from the activity and concludes by saying that there may be difficult times each one faces, so as a life boat this group should serve as a means to support and motivate each other.

Developing Treatment Advocates among Children living with HIV through Treatment Education

SESSION 3: FACILITATING TRUST AND SUPPORT Continued Objectives

 To facilitate better understanding towards each other and strengthen the group as a peer based group

Session Outcome

 By the end of the session trust among children is further strengthened and support developed to make a positive influence over each other

Time Taken

1 hour

Materials Required

Charts, Sketch pens, Marker pens, Pins, Crayons

Celebrities 20 minutes

ACTIVITY ONE 1. Make a list of famous people that the children would know. There should be as many names as there are children. Pictures of celebrities can be used if children cannot read or write. 2. If the facilitator knows the group well, s/he could match the characteristics of the famous person to that of a child. If this is done, the facilitator must point out the connection that s/he sees between the celebrity and that particular child. The facilitator could also choose a theme such as leaders, well-known personalities, singers or sports personalities. 3. The famous person’s name is tacked onto the back of the child so s/he cannot see it. Encourage the children to walk around and ask questions to others who must answer in only yes or no. No other hints can be given.

Developing Treatment Advocates among Children living with HIV through Treatment Education

12 4. The exercise is complete when almost all of the children have found out who they are.

Only Positive Thoughts Allowed 40 minutes

ACTIVITY TWO 1. Discuss with the children what kinds of topics they would like to talk to some people about more than with others. Then ask them to try and make sure that everyone is comfortable in talking to everyone else 2. Ask children to brainstorm on how people whom they are comfortable with talk to them. Some examples are given below: i. Listens; ii. Smiles at us; iii. Speaks kindly; and/or iv. Makes us feel special 3. The children then brainstorm on why they do not like to talk to people who make them uncomfortable. The list may look like this: i. Do not listen; ii. Speak unkind words; iii. Make us feel we are worthless; and/or iv. Always think we are wrong. 4. Tell the children to write a positive statement and a negative statement and then to choose which they would like for themselves. Make two columns on a flip chart. Write “words that make you happy” on top of one column and “words that make you unhappy” on top of the other. Give one or two examples and then ask the children for more. Words that make me happy That was an interesting thought! You have a lovely smile She likes to read Try it again That’s better

Developing Treatment Advocates among Children living with HIV through Treatment Education

13 Words that make me unhappy What a stupid remark! You look terrible She is lazy You are so slow When will you learn? 5. Read out each statement aloud and ask the children if they would like this in the training. If they say ‘Yes’ place an X or a happy face. Place a Y or an unhappy face next to each statement on the list of what they do not want. If the children can read, encourage them to read out the statement and ask: “Do we want this in our session?” The appropriate symbol should be placed next to the statement depending on whether the children say “Yes” or “No.” 6. Ask the children how we can help everyone to say these happy words and what happens if someone forgets. The facilitator must not accept any suggestion for punishment for not saying the happy words, but encourage more supportive behavior like helping each other and giving people another chance. 7. The “atmosphere” of the sessions depends a great deal on the personal behavior and attitude of the facilitator. It is important that the facilitator acts in a caring and respectful attitude toward the children.

Developing Treatment Advocates among Children living with HIV through Treatment Education

SESSION 4: KNOWING MYSELF Objectives

 To build the self esteem of each child in the group and develop acceptance among each other

Session Outcome

 By the end of the session children develop a positive thought about themselves

Time Taken

1 hour

Materials Required

Charts, Sketch pens, Marker pens, Pins, Crayons, Paper plates with white background

ACTIVITIES

ACTIVITY ONE

I Love Myself

1. Ask the children to say, “I love myself.” While saying this, the children must use simple gestures such as smiling, hugging oneself, and standing up tall and proud and any other way that expresses the meaning of what they are saying. 2. Give each child a paper plate and ask them to write on top, “I love myself because …” (If a child cannot write, the facilitator or another child can help or a child can draw). Encourage each child to draw any symbol they like for themselves. 3. If the children are unfamiliar with symbols, introduce some common symbols as a preparatory activity. 4. These may include road signs (one way, no parking), airplane (to show airport), a handshake (to show friendship), an eye with a teardrop (to show sadness) or the three monkeys that Gandhiji was fond of (one monkey with his eyes closed to symbolically say “see no evil,” the other with his hands over his mouth symbolizing “speak no evil,” and the third with his hands over the ears

Developing Treatment Advocates among Children living with HIV through Treatment Education

15 symbolizing “hear no evil”). Other symbols may be used by the facilitator if required. 5. Ask each child to write two things they like about themselves or are good at. It could be anything, starting with a physical characteristic, or a quality they have, or a behavior or a skill. Some children might need assistance to think of some qualities or skills they are good at. In that case their friends can help them. 6. Ask the children to share what they have written with their partner on the right. 7. Next, ask the children to tape the paper plate on their backs and move about the room. Ask each child to write something positive on the plate. Remind each child to be specific. For example, instead of “nice” or “helpful,” ask them to write, “helps with homework,” “talks to me when I am lonely,” “says good jokes” or “always keeps my secrets.” 8. In a circle, ask each child to read out “I love myself and others love me. I am….” The child should read out everything that s/he and the others have written. This may sound like: “I love myself and others love me. I have a happy smile, good handwriting, look after my little sister, am a good batsman, do not fight with my friends and have good muscles.” 9. Then the facilitator can ask how each child felt about reading all what children have written about each other. Also enquire whether some children found it difficult to write about few people’s qualities. 10. Summarize the activity saying that the children could write qualities of each person in the group based on the relationship established.

Developing Treatment Advocates among Children living with HIV through Treatment Education

SESSION 5: BASICS OF HIV AND AIDS Objectives

ď ś To understand the basic facts about HIV and AIDS and clarify any myths and misconceptions about HIV and AIDS

Session Outcome

ď ś Children learn the right information about HIV and AIDS

Time Taken

1 hour 45 minutes

Materials Required

Pre-test questionnaire 20 minutes

Brainstorm and discussion 40 minutes

Questionnaire/Individual sheets (translated in the local language is best), Pens, Charts, Marker pens, Small Round Charts cut in green, yellow and red and Name cards of RISK, NO RISK and HIGH RISK ACTIVITY ONE A pre-test questionnaire with 10 questions will be given on individual basis and the children will fill in their responses on what they know. The questionnaire is attached as annexure.

ACTIVITY TWO The basics of HIV and AIDS are handled through discussion method. The following point will be discussed in the training session in covering the basics: Discussion Question 1: What is HIV? H means Human I means Immuno-deficiency V means Virus As the definition says it means HIV can live only in the human body and not in any other body and it is only a virus

Developing Treatment Advocates among Children living with HIV through Treatment Education

17 Discussion Question 2: What is AIDS? Acquired Immuno Deficiency Syndrome Which means it is received and not hereditary And due to the immunity becoming less and as it affects our immune system, other infections are easily contracted and that collection of infections is known as syndrome. Discussion Question 3: HIV may be transmitted by 1. Unprotected sexual relations with a person who is HIV positive (because of exchange of semen or vaginal fluids/secretions). This is the most common route of HIV transmission. Unprotected sex means any sexual act involving sexual organs into penetrative sex without a condom. 2. Transmission of infected blood from one person to another. HIV can enter the body when contaminated blood or blood products that contain HIV is given to a person through blood transfusion. 3. Through the use of non-sterilized and /or infected needles and syringes. This mode of transmission includes the use of contaminated needles and syringes, transfusions involving HIV-infected blood, and transplants involving HIV infected organs and tissues. HIV transmission through the use of contaminated needles and syringes may occur through needles shared among intravenous drug users or through accidental punctures sustained by health care personnel. This form of transmission also includes needles used for tattooing, injection of steroids, scarification, and ear piercing 4. The virus can be transmitted from HIV positive parent to child. The chances of passing HIV to child from HIV positive mother before or during birth are about one in four, or 25 percent, for each pregnancy while the mother is already infected with the virus. That can transmit: Developing Treatment Advocates among Children living with HIV through Treatment Education

18 • During pregnancy. • During birth. • During breast-feeding. There are about 30 percent chances of passing the HIV infection from a mother to her child through breast milk.

Discussion Question 4: Window Period (Asymptomatic Stage): After the virus enters into body, antibodies are produced against the virus. It takes about 3-6 months to detect the HIV by a blood test. This period during which the presence of HIV antibodies are not detectable in the blood is called a window period. During this period, a person may pass on the infection to others unknowingly. Or the person may pass on the infection if he has already tested his blood within three months after the exposure and has found to be negative.

ACTIVITY THREE

Understanding the risk and non risk of HIV: STOP, GO, THINK Exercise 45 minutes

 On a Red round piece of chart paper write, “STOP! This is high risk for HIV;”  On a Yellow round piece of chart paper write, “THINK! This may have some risk of HIV;” and  On a Green round piece of chart paper write, “GO! This activity has no HIV risk.”  Paste them in different parts of the room. Read the behavior and ask the children to stand under the sign they think is the best answer. Then ask them why they think the behavior is more risky or less risky. Examples to use to determine Risk, Some Risk, No Risk for HIV: The following statements refer to the risk involved in the person engaging in that activity. 1. Donating Blood - GREEN 2. Eating food made by someone who is living with HIV - GREEN

Developing Treatment Advocates among Children living with HIV through Treatment Education

19 3. Hugging someone - GREEN 4. No sex, abstinence (Emphasize-Green only 100% method of eliminating sexual transmission of HIV) - GREEN 5. Using a public toilet - GREEN 6. Kissing – YELLOW (only if there is a sore, otherwise GREEN) 7. Having sex without a condom (for children above 14) RED 8. Shaking hands with a person who has HIV GREEN 9. Having oral sex without condom - RED 10. Getting pregnant when you have HIV – YELLOW 30% chance that the baby will be infected. Also ART drugs during pregnancy are effective twothirds of the time. 11. Being bitten by a mosquito - GREEN 12. Sharing needles - RED 13. Drinking alcohol - YELLOW 14. Using a condom correctly and consistently GREEN. 15. Sitting next to someone with AIDS - GREEN 16. If a person living with HIV coughs or sneezes at you - GREEN 17. If a person living with HIV cries and the tears come in contact with you – GREEN

HIGH RISK

Developing Treatment Advocates among Children living with HIV through Treatment Education

LOW RISK

NO RISK

SESSION 6: IMMUNE SYSTEM, HIV AND TREATMENT Objectives

 To learn about the functioning of immune system and how immune system functions  To understand how HIV affects the immune system

Session Outcome

 Children understand the functioning of the immune system and also learn ways to boost the immunity

Time Taken

1 hour 45 minutes

Materials Required

White colour, round shaped charts showing different cells in the body. Square shaped charts showing different illnesses.

Elephant and Lion Game 30 minutes

ACTIVITY ONE The Elephants and Lions Game may also be used to reinforce the learning from this section. Be sure to substitute animal names more appropriate for your community. The game is played like this:  Ask for one volunteer. Have the volunteer stand in the center of the room. This person is the baby elephant.  Ask for six more volunteers. These volunteers are the adult elephants. Their job is to protect the baby elephant. They should form a circle and join hands around the baby elephant.  To show them the importance of their job, the facilitator should try to hit the baby elephant. You will find that the adult elephants quickly get the point and close ranks to avoid attack. The adult elephants should stand very close to the baby elephant.  Now, ask for four or five more volunteers. These

Developing Treatment Advocates among Children living with HIV through Treatment Education

21 people are the lions. Their job will be to attack the baby elephant. They should try to jab, hit, kick, or punch whatever they can do to hurt the baby elephant.  When the facilitator says, “Go!” the lions should try to attack the baby elephant. Let this go on for a few seconds. Until the baby elephant has at least one contact from the lions. But the baby elephant should not be hurt. Now ask the following questions (the volunteers should stay where they are.):  What is the baby elephant? What does the baby elephant represent? Answer: The baby elephant is the human body.  What are the adult elephants? Answer: The adult elephants are the immune system. Their job is to protect the body from invading diseases.  So, what are the lions? There may be a few people who say that the lions are HIV. That is not so. Ask another person to try to tell you the meaning of the lions. Answer: The lions stand for the diseases, illnesses and infections that attack a person’s body.  The facilitator now very dramatically goes to each of the lion volunteers. One by one. Say, .These diseases, such as Tuberculosis (touch the first volunteer), Malaria (touch the next person), diarrhea, and cholera (touch another person) may attack the human body but are they able to kill the human body?  The answer should be “No” The human body gets attacked by diseases or germs every day, but the immune system (point to the adult elephants) manages to fight them off and protect the body. The human body might get sick (such as the hit or kick that the baby elephant suffered), but it does not die, because the immune system is strong.  The facilitator continues: But suppose I am HIV. I come to this body (the baby elephant), and I attack and kill the immune system, At this point, the facilitator should touch all but two of the adult Developing Treatment Advocates among Children living with HIV through Treatment Education

22 elephant volunteers and ask them to sit down. Touch each person as you remove them, acting as if HIV is killing the immune system.  The facilitator continues; Now, will the baby elephant be protected? Will the human body be safe with the immune system gone?  Next, the facilitator should again tell the lions to attack (touch only) on the word. “Go!” The lions are able to easily get to the baby elephant this time. Summarize the idea that HIV has killed the immune system. This lack of an immune system makes it possible for diseases like tuberculosis, diarrhea, and so forth, to actually kill the person, rather than just make the person sick. To be sure people have understood, you can ask Does HIV kill the person? They should say, “No”. The diseases killed the person. Also, ask someone to tell you the difference between HIV and AIDS.

Understanding the key terms: Discussion method 10 minutes

ACTIVITY TWO Discussion Questions a. What is CD 4? CD4 Cells - These cells have molecules called CD4 on its surface. These "helper" cells initiate the body's response to invading micro-organisms such as viruses.

Developing Treatment Advocates among Children living with HIV through Treatment Education

23 b. What Does HIV Do to Your Body? HIV is a virus that uses the genetic material from our CD4 cells to make more copies of itself. The virus likes one particular cell in our immune system called a CD4 cell or t-cell. When it uses that cell's genetic material, it damages the T-cell making it unable to do its job in our immune system. The more of these CD4 cells that are damaged, the weaker your immune system becomes. Eventually, your immune system will become so weak that it will not be able to protect you from other illnesses and infections, thus you become sick. Simply put, HIV doesn't make you sick. It weakens your immune system, allowing other illnesses and infections to make you sick.

Developing Treatment Advocates among Children living with HIV through Treatment Education

SESSION 7: LIFECYCLE OF HIV AND ART Objectives

Session Outcome

 To learn about the HIV life cycle and understand the current ARV role in the life cycle of HIV  To learn about the functions of three different groups of drugs available in India  Children understand how HIV attacks and multiplies through CD4 cell and learn basics of ART, what ART does against HIV in CD4 cell and know about the available drugs at ART centers in India

Time Taken

1 hour 45 minutes

Materials Required

Life cycle of HIV picture cut out, tablets cut out, chart showing the available drugs in India.

Understanding HIV lifecycle

ACTIVITY ONE

30 minutes

The following activity is demonstrated through the cutouts prepared as shown in the picture. Each of the item in the lifecycle need to be separately cut and introduced one by one following the given below 10 steps. Developing Treatment Advocates among Children living with HIV through Treatment Education

25 HIV Life Cycle [see annexure for detailed picture]

1. Free virus circulates in the bloodstream. 2. HIV attaches to a cell. 3. HIV empties its contents into the cell (infects the cell). 4. The HIV genetic code (RNA) is changed into DNA by the reverse transcriptase enzyme. 5. The HIV DNA is built into the infected cell's DNA by the integrase enzyme. 6. When the infected cell reproduces, it activates the HIV DNA, which makes the raw material for new HIV viruses. 7. Packets of material for a new virus come together. 8. The immature virus pushes out of the infected cell in a process called "budding." 9. The immature virus breaks free of the infected cell. 10. The new virus matures: raw materials are cut by the protease enzyme and assembled into a functioning virus. To ensure whether the children have better understood; the facilitator can ask the children to repeat the 10 steps demonstrating likewise

Understanding ART 30 minutes

What is ARV Therapy? ARV therapy means treating viral infections like HIV with drugs. The drugs do not kill the virus. However, they slow down the growth of the virus. When the virus is slowed down, so is HIV disease. Antiretroviral drugs are referred to as ARV. ARV therapy is referred to as ART. ARV Drugs Each type, or "class", of ARV drugs attacks HIV in a different way. The first class of anti-HIV drugs was the nucleoside reverse transcriptase inhibitors, also called "nukes". These drugs work by blocking Step 4, where the HIV genetic material is converted from RNA into DNA.

Developing Treatment Advocates among Children living with HIV through Treatment Education

26 •AZT (ZDV, zidovudine, Retrovir) •ddI (didanosine, Videx) •d4T (stavudine, Zerit) •3TC (lamivudine, Epivir) •Abacavir (Ziagen) •Tenofovir (Viread) (a nucleotide)

Another class of drugs blocks the same step of the life cycle, but in a different way. This class is the nonnucleoside reverse transcriptase inhibitors, or NNRTIs. • Nevirapine (NVP, Viramune) • Efavirenz (EFV, Sustiva, Stocrin)

The third class of antiviral drugs block Step 10, where the raw material for new HIV virus is cut into specific pieces Protease Inhibitors • Saquinavir (SQV, Invirase) • Indinavir (IDV, Crixivan) • Ritonavir (RTV, Norvir) lopinavir • Nelfinavir (NFV, Viracept)

How are the drugs used? When HIV multiplies, most of the new copies are mutations: they are slightly different from the original virus. Some mutations keep multiplying even when you are taking an ARV drug. When this happens, the drug will stop working. This is called "developing resistance" to the drug. If only one ARV drug is used, it is easy for the virus to develop resistance. But if two drugs are used, a successful mutant would have to "get around" both drugs at the same time. And if three drugs are used, especially if they attack HIV at different points in its life cycle, it's very hard for a mutation to show up that can resist all three drugs at the same time. Using a triple-drug combination means that it takes much longer for resistance to develop. For this reason, using just one ARV drug (monotherapy) is not recommended. Developing Treatment Advocates among Children living with HIV through Treatment Education

NACO Recommended pediatric ARV drugs for children over 3 months in India NRTIs  Zidovudine (ZDV) or

NNRTIs  Nevirapine (NVP)* or  Efavirenz (EFV)

 Stavudine (d4T)* plus  Lamivudine (3TC)*

WHO Recommended Regimens  Preferred Regimen:  2 NRTI’s + 1 NNRTI  2 NRTI’s + 1 PI  Alternative Regimen:  1 NRTI + 1 NNRTI + 1 PI  ABC + ZDV + 3TC

Developing Treatment Advocates among Children living with HIV through Treatment Education

* If age <3 years or weight <10 kg, NVP; If >3 years or weight >10kg, NVP or EFV

SESSION 8: ART ADHERENCE AND DRUG RESISTANCE Objectives

 To enable children know WHO stages  To make children understand importance of Treatment Adherence and to avoid drug resistance

Session Outcome

 By the end of the session children will know WHO’s 4 stages, importance of ART adherence and avoiding drug resistance through treatment adherence

Time Taken

1 hour

Materials Required

Charts, Sketches, Crayons, human outline cutouts, colored cutouts as shown in picture, color stickers (Bindi in colors will help on showing viruses)

WHO classification on the Pediatric HIV stages

ACTIVITY ONE

20 minutes

The WHO classification of the pediatric HIV stages is presented through coloring activity method. First the participants will be given each an A4 sheet, with colors (crayons and sketch) lighter to darker hues of the same color.

Coloring and Presentation

Then the facilitator ask the participants to leave the first row without colouring, then the next row with light colour, above that darker hue than the second row and the last row the darkest of the colour selected. So in short, the colour moves from lighter to dark one from the second to the fourth row to indicate the stages 1 to 4. The picture is illustrated below. The facilitator then explains the hue differences that signify the intensity of the child’s health status. With Developing Treatment Advocates among Children living with HIV through Treatment Education

29 this the different stages and monitoring number is explained to the participants. As the participants are involved in coloring, they learn the information faster and that will enable them to understand their own health stage. Children are aware of their health status and give importance to their WHO Stages HIV associated immunodeficiency 1. Not significant

>5yr <500

2. Mild

350-499

3. Advanced

201-349

4. Severe

ART Adherence

CD4 count

<200

ACTIVITY TWO

20 minutes As shown in the illustration below, human outline is cut in chart paper and are colored from light color to darker color. This is to show that every time we take ART tablet, our blood stream is full of drug and that suppresses the virus to multiply. As time goes by 3 hours, 6 hours the drug level reduces which is indicated by showing a lighter color of the human outline. Once again the drug level in the blood stream increases when regularly ART is taken again after 12 hours. A clock type chart is cut and placed above the human outline every time the drug is taken. After explaining this to the participants, two or three of the participants should be requested to explain the same once again to the group. This will reinforce the information learnt and also helps the facilitator to ensure the clear and right information is received by the children.

Developing Treatment Advocates among Children living with HIV through Treatment Education

Morning

Night

Morning

When Drugs are taken on time

Missed dose

When Drugs are not taken on time

Drug Resistance

ACTIVITY THREE

20 minutes When virus multiplies it makes copies of itself with small changes in its genetic material. Sometimes these small changes help the virus to out live the effect of the drugs. The virus with a change enabling it to outlive the effect of drugs are called resistant virus. When people take drug on time, viral multiplication is slowed or stopped when we take the drugs on time. Thereby decreasing the number of the virus in our body. This reduces the chance for the resistant virus to multiply. When people donâ&#x20AC;&#x2122;t take drug on time, the opportunity for the virus to multiply increases. The resistant virus will multiply and out live the drugs, which mean that the drug will no longer work in our body. And we might need to look at the next combination of drugs that will Developing Treatment Advocates among Children living with HIV through Treatment Education

31 work for us. This also means that we narrow down the options of drugs that will work against HIV. This information is explained to the participants following the same activity, one human outline is taken and small round stickers are pasted in it (see illustration). The green round stickers represent the drug-sensitive HIV viruses. The red ones indicate the drug-resistant ones. It is then explained that every time the person misses a dose, there is an opportunity given for resistant viruses to multiply. This activity should also be requested to be explained again from two or three participants.

Developing Treatment Advocates among Children living with HIV through Treatment Education

SESSION 9: ART AND SIDE EFFECTS Objectives

 To enable children learn the management of side effects of ARV.  To facilitate children learn the management of side effects through home remedies too

Session Outcome

 Learn about ARV and its side effects and understand side effects management

Time Taken

1 hour

Materials Required

flip chart, marker pens ,print out from the adherence training module for counselors by engender health

Body mapping 20 minutes

ACTIVITY ONE In this exercise you will invite, one volunteer from the group of children to lay down on the flip chart. If the children are adolescents, then you have to stick two flip charts and then the facilitator draws the outline of the child. Following this, ask the children to mark the areas where they have experienced symptoms after taking ARV. Later the children are asked to write the symptoms they have experienced in those locations. Then the facilitator expresses the reason for side effects, is that the body takes time in adjusting to any type of new agents, in the case of treatment it is the chemicals. Once the system has accepted, no major symptoms are experienced. After making the statement, the facilitator brings the group to a common consensus of the point through previous experiences of children within the group who have been on ARV for sometime.

Developing Treatment Advocates among Children living with HIV through Treatment Education

Body mapping exercise and children plotting the side-effects ACTIVITY TWO The facilitator then takes the common side effects and with the use of the sheets from the engender health training module, groups of 5 are divided among the participants. Following this each group discusses a side effect and its management. Prior to this, the sheets were translated in local knowledge and as the description is followed by pictures, it is easier for children to read and understand. Then each group presents a role play. This technique enabled children to learn and even teach the other groups on the ARV side effects and its management. Reference sheets: from the ART peer education series from Engender Health (see annexure)

Developing Treatment Advocates among Children living with HIV through Treatment Education

SESSION 10: NUTRITION AND POSITIVE LIVING Objectives

 To help children understand the various factors influences the health of the person and not medicines alone.  To cover the basics of nutrition and to plan a healthy diet

Session Outcome

 Children understand the factors that influences and encourage healthy living and also know the basics of nutrition

Time Taken

1 hour

Materials Required

Brainstorm and poster making on Positive living 30 minutes

Charts - 2 sets of 4 different colored charts Posters on vegetables, fruits, food stuffs, some amount of cereals, grains and pulses, even original fruits and vegetables ACTIVITY ONE The participants will be divided into four groups and will be asked to list down all the factors that makes an individual healthy and specific to children living with HIV. After the group has listed, each group will come and present the points. Following this, the participants will work in the same group by drawing and making a poster on the factors that enable a person to be healthy.20 minutes will be given for each group and following that the group will make a presentation of the poster.

Developing Treatment Advocates among Children living with HIV through Treatment Education

35 Few basic postures of yoga will be taught with support from an external resource for them to relax and learn.

Understanding the basics of nutrition and hygiene 30 minutes

ACTIVITY TWO  The group will be divided into four and will be asked to list down all the food items they commonly eat. The discussion in groups will be for 10 minutes and later the findings will be presented to the larger group. Then from the findings the facilitator will arrange and explain the aspects of food pyramid  Then the second sub activity is presenting the foods and the nutrients they are rich. eg carbohydrates - all starchy foods, rice-potato etc.  Like that the major nutrients and the micro nutrients essential for children like iron, calcium, phosphorus, magnesium, zinc and selenium will be taught  After this the participants will be divided groups as macro nutrients and vitamins and minerals separately and will be asked to cut pictures relevant to that nutrient and will list down the functions of each food items. Then each group makes the presentation.  Enhancing the available food with more nutrients like sprouting will also be taught and shown to children on the previous day, so that they will be able to see the sprouted grams. The aspects of eating safe food and the hygiene to be followed will be discussed in larger group for 10-15 min.  Symptom oriented diet will also be shared to children, so that take enough care of themselves.  Finally as part of revision, each child will be given a chart (a calendar and from the training date) they will write what food stuff they had and what nutrient they had for that day.  The facilitator will stress that the sheet is only for self evaluation of the kind of food they give to their immune system.  Tea-break-will be fruits salad and vegetable salad(slightly steamed) so that children are not affected by any infections.

Developing Treatment Advocates among Children living with HIV through Treatment Education

Food pyramid chart prepared by children

Show case of real vegetables, fruits and cereals to help children identify the nutrients in each food item they eat

Developing Treatment Advocates among Children living with HIV through Treatment Education

SESSION 11: UNDERSTATING OPPORTUNISTIC INFECTIONS AND PREVENTING THEM Objectives

 To enable children to be aware of the common infections and access treatment at the right time  To be aware of their health status and encourage healthy living free from any kind of opportunistic infections.

Session Outcome

 Children will be aware of the common infections and know ways to keep them safe from being affected by it

Time Taken

1 hour

Materials Required

Charts, marker pens, over head projector, pictures of common Opportunistic Infections

Revising immune system and its functions 15 minutes

ACTIVITY ONE The facilitator will revise using the immune system game used as an exercise to introduce the topic on how HIV affects the immune system. So in order to encourage a better understanding, two children from the group will be invited as facilitators to facilitate the activity. This will ensure whether the children have understood the function of the immune system clearly and also develop their own understanding. (Detailed activity can be seen in session 6)

Developing Treatment Advocates among Children living with HIV through Treatment Education

38 Presentation on Opportunistic infections

ACTIVITY TWO The facilitator selected 3 common infections that affect children in this part after being infected by HIV. For the group, Tuberculosis, pneumonia and candidacies were selected. In each of the topic, the cause, the transmission mode, precautions one needs to take during the infection, treatment and prevention was shared. In order to make the session more useful, an expert preferably a medical doctor if invited will help in clarifying questions that affect children.

Tuberculosis Cause: Caused by a bacteria Myco bacterium tubercule Transmission routes: Air and spreads from one person to another through cough or sneeze. TB bacilli is present in almost every individual but symptoms will be shown only if the immunity is less. Types of TB Pulmonary TB - It affects the lungs Extra-pulmonary TB - It affects the other parts of the body, like the stomach, brain etc. Testing procedures: Sputum test and X ray method are the commonly available testing procedures Symptoms of TB: Precautions one should take if one has got TB: While coughing close the mouth with a hand towel or with oneâ&#x20AC;&#x2122;s hand. If the individual spits the phlegm should, close it with the mud, so that the other person is not affected. Treatment process: People with TB will start to feel better after only a few weeks of treatment and become non-infectious after two weeks, but must continue to take medication for the full period prescribed. People with HIV who have latent TB infection stand a greater chance of progressing to active TB.

Developing Treatment Advocates among Children living with HIV through Treatment Education

39 Pneumonia (PCP) Caused by: Pneumocystis carinii which is a widespread fungal organism found throughout the population PCP was first noticed in children who were immuno compromised because of Malnutrtion. People with HIV are potentially at risk to PCP if their CD4 count is below 250-200, although most cases occur when the count is below 100. Symptoms  Shortness of breath and/or fever  Persistent dry cough  Occasional pain or tightness in the chest  Weight loss  Diarrhoea Diagnosis and tests  chest x-ray  sputum and spit examination Induced or by bronchoscope (Salt water spray) Prophylaxis If your CD4 count falls below 200-250, you will be advised to start taking prophylaxis to prevent a first attack of PCP. A daily dose of co-trimoxazole, especially after an attack for long periods

Candidiasis (Thrush): Caused by: Candida Albans (fungi or yeast) Found very commonly, esp. in cavities like mouth and vagina. The growth of it is generally suppressed by the body’s immunity. Symptoms White patchy growth in the region, blobs on the tongue, cheeks, and gums (can be scrapped off). May cause pain in mouth. Difficulty in swallowing or sore throat. Forms: Oral (most common), Oesophageal(chest pains) Diagnosis and test Simply by examining it. Definite by examining using biopsy or sample under a microscope Developing Treatment Advocates among Children living with HIV through Treatment Education

SESSION 12: ADVOCATING CONCERNS AND ISSUES AFFECTING CHILDREN Objectives

 To understand the various issues affecting children living with HIV in the context of treatment and care as a larger group  To build the capacities of children as treatment advocates in addressing the gaps

Session Outcome

 Children know how to represent the issues in a participatory process

Time Taken

1 day

Materials Required

Charts-green colour and other colors cuts – leaves, Brown sheet, Darker shade of brown sheet

Dream tree exercise Morning Session

ACTIVITY ONE  Divide the children into three groups, one under the care of grandparents, the other under the care of single parent and others as a representatives of both and parents.  Each group will be given a tree where in the stem, they will write the problems children face with regard to treatment and the social security concerns-access/availability/affordability/fears etc will be explored.  Then the group will look at what have been the causes for the issues in the root region. eg treatment - not able to take medicines regularlybecause of lack of food /lack of support/lack of information etc.  Following this the group will select and does a role play on what they want to have. Later the same

Developing Treatment Advocates among Children living with HIV through Treatment Education

Market Place Event Afternoon Session

group will sit together write down all the dreams they foresee out of those problems and will list down on the leaves as their dream tree. The visualization is to make them feel we all strive to make the lives more colorful. Putting up the Dream Trees on the Wall The charts prepared by children through the dream tree exercise can be displayed and can be set up in the form of market place. Each child can present the issues on the chart. Demonstrating through Role plays Children can present a role play on the topics around treatment and social security. About 4 issues can be presented, with the existing situation, the consequences of it and the desired change they want. During the presentation, the children can present, as children what do they feel can be done to change from existing situation to the desired state. Open floor discussion The stakeholders (like District Collector, ART medical officer, ART counselor, Chief Education Officer, DD Health etc) can be invited around the issues presented by children and a chart what children had shred can be presented to the stakeholder. Open questions and discussions can be facilitated for children to share their issues in front of the stakeholder. Follow-up Children should be equipped enough to plan the follow-up plan on what should be done/who will take in charge and when. This will ensure issues represented are effective.

Developing Treatment Advocates among Children living with HIV through Treatment Education

ANNEXURE Pre-Test Questionnaire Write TRUE or FALSE 1. A person with HIV infection looks different from a person with AIDS. 2. By looking at a sick person, we can know whether he/she is HIV positive. 3. A person can get an HIV infection by using a public toilet. 4. During window period the person can transmit HIV infection.. 5. AIDS is a stage where a person with HIV infection will have collection of symptoms or diseases. 6. AIDS is a punishment from God. 7. Abstinence from sex is the surest way to prevent sexual transmission of HIV 8. infection 9. Mosquito bites can transmit HIV infection from one person to another. 10. Women are more prone to HIV infection because of their physiology and gender. 11. The country with the highest number of people with sexually transmitted infections is India. 12. HIV infection can be prevented by using sterilized instruments during any invasive procedure {like injections, dental, operations}. 13. HIV infection is a chronic condition where an infected person has the opportunity to lead a healthy life. 14. In India all the people who are HIV infected know their HIV status. 15. If a person has sex before puberty, they are at no risk for HIV infection.

Developing Treatment Advocates among Children living with HIV through Treatment Education

HIV LIFE CYCLE

Developing Treatment Advocates among Children living with HIV through Treatment Education

SIDE EFFECTS HANDOUTS

Developing Treatment Advocates among Children living with HIV through Treatment Education

REFERENCES  Adolescence Education Programme, Section IV: HIV Prevention and Life Skills  Life Skills Education Tool kit for orphans and vulnerable children in India – FHI | USAID  LIFE SKILLS MANUAL, 66 PEACE CORPS  Treatment Education module for Caretakers of children living with HIV – KPWN+, Buds of Christ and Cochin Corporation  Pediatric ART – I-TECH, Tambaram India  Opportunistic Infections – Presentation slides of Dr. Umesh  Adherence to Treatment for HIV – Participant Manual for Counselors Engender Health Society

Developing Treatment Advocates among Children living with HIV through Treatment Education

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Developing Treatment Advocates among Children living with HIV through Treatment Education