Antiretroviral Drugs. Paediatric Palliative Care For Home Based Carers. Funded by British High Commission, Pretoria Small Grant Scheme

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1 Antiretroviral Drugs Paediatric Palliative Care For Home Based Carers Funded by British High Commission, Pretoria Small Grant Scheme

2 Thembi Thembi is two years old and was born with HIV. In the past, the prognosis for children like Thembi in South Africa has been very poor. TALC

3 Prognosis for Children with HIV These children were all born with HIV In South Africa, how many of these children will reach their 2nd birthday? 5 th Birthday?

4 New Hope!!

5 Antiretroviral Drugs (ARVs) 3 Main Classes NRTIs ddi, AZT, 3TC, d4t, Abacavir NNRTIs Efavirenz, Nevirapine Protease Inhibitors Kaletra and other PIs

6 What are ARVs? Lots of drugs are used to treat or prevent infections in children with HIV But, ARVs actually fight the HIV virus directly They do NOT cure HIV HIV is now becoming a chronic, manageable condition for children

7 Now... With ARVs, children infected with HIV can expect Fewer infections Enhanced Quality of Life Longer Life

8 How do ARVs do this?

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13 So ARVs never cure the child as HIV will remain in his body BUT ARVs help to protect his immune system for as long as possible so that he can can fight off infections

14 Do all Children Need ARVs? No! Even if the child is experiencing some infections every now and then, his immune system may be able to cope for longer Before the Doctor decides to start a child on ARVs, he will consider: 1) What sicknesses does the child have? 2) How weak is the child s immune system? 3) Is there someone to give the ARVs to the child?

15 So What s Involved? A combination of three different drugs is given Most children in South Africa will be given: 3TC + D4T + Kaletra Or 3TC + D4T + Efavirenz

16 Thembi 3.5 mls 3TC 9.0 mls D4T 2.25 Kaletra TALC Thembi has just started taking ARVs. Every day, she must take: 3.5 mls 3TC 3.6 mls D4T 2.25 mls Kaletra

17 Thembi She must also take 5 mls Multivitamins 5mls Bactrim TALC

18 What to Expect If Thembi takes all these medicines they may work very well for her. Weight gain Increased appetite Increased energy Reduced size of glands Improved skin Fewer infections Enhanced quality of life Longer life

19 But They can only work well if she takes them exactly as prescribed! This is known as Adherence But this is not easy!

20 Not like other medicines Every dose for life The right drugs The right doses The right way The right time

21 Can the child take them? The drugs can only work if the child can actually take them Is she able to swallow the tablets? Is able to tolerate large volumes of syrup? Does she like the taste of the tablets/syrups?

22 Who s giving the ARVs? A child is dependent on the care giver for ARVs Does she understand the drugs? How does she feel about the ARVs? Can she remember to give them? Is she non-adherent herself? TALC

23 If the child doesn t take them properly? HIV will be able to start attacking the soldiers again, making them weak. The child will become sick again He may become resistant to those ARV drugs (the ARVs will no longer be able to control HIV) Once resistant, there are only a few ARV options left

24 Giving ARVs to a Child Total dependence on care giver Adherence support involves practical advice to care giver Nutritional requirements may prove difficult

25 Giving ARVs to a Child Developing own identity Negotiation is difficult! Refusal to take medicines is common Palatable, easy to swallow medications is essential Disguising ARVs is helpful Play therapy reduces anxiety and increases sense of control

26 Giving ARVs to a Child Increased understanding Has lots of questions!! Open explanations about medications is essential Sharing responsibility need sense of control but not responsibility beyond their years!

27 Giving ARVs to a Child Most challenging age group Want to be independent Need to be like friends Rebellion and nonadherence common Frequent conversations re adherence important Respect complex needs and circumstances

28 Handy Hints! Talking with the Child Taking Medicines Together Sticker Charts Play Therapy

29 Handy Hints Mixing Tablets Pill boxes Pill crushers Pill Swallowing Play Groups

30 Handy Hints! Support for Carers Teach carers what to give Teach carers how to give it Assess carer giving medicine g Incorporate in to daily life Regular visits and reassessment

31 Side Effects of ARVs It is true! ARVs commonly cause side effects in adults and children I ve heard ARVs could make my child even sicker? These may: cause distress to the child decrease quality of life lead to non-adherence TALC

32 Side effects Often last a short time only Symptoms may be alleviated with medication Early identification, referral and appropriate management is essential nausea vomiting diarrhoea abdominal pain Support and encouragement for the child and family vital skin rashes headaches

33 Stopping the drugs? Only the Doctor should stop the drugs!

34 Severe side effects Long-term side effects may also occur: Changes in body fat Damage to body cells Damage to bone Cancers Always reinforce the importance of clinic appointments and blood tests to the care giver

35 A concern! Side Effects of ARVs are a big concern Particularly as: children s bodies are still developing children may well be exposed to these drugs for much longer than adults

36 You have a vital role! ARVs can have an immense impact on the quality and length of life of a child with HIV However, this is threatened by two great challenges: Children must adhere well if ARVs are to work Side Effects may occur

37 Your Role in Adherence How could you help to ensure children get their ARVs? f

38 Your Role in Adherence Ensure carer understands regimen and importance of adherence In a non-confrontational manner, assess whether carer is giving ARVs? Regular support and encouragement for child and family Regular monitoring and re-evaluation Multidisciplinary Liaison Encourage regular clinic appointments Home Visits to offer support Encourage Faith to adopt a treatment supporter

39 Your Role in Addressing Side Effects How could you help to reduce the chance of side effects affecting a child s quality of life? f

40 Your Role in Addressing Side Effects Regular monitoring Knowledge of the common side effects of ARVs Educating carers what to expect/look out for Educating carers to call if concerned Making prompt referrals Support and encouragement for the child and family Assist with symptom control and management Re-evaluation of symptoms

41 Summary ARVs are dramatically improving the prognosis for children with HIV Yet, they can cause great distress, anxiety and confusion for children It is equally difficult for carers, who are commonly under enormous strain with their own diagnosis and ARVs The child and family MUST be considered as a whole They require immense support and encouragement