1. Pain Paediatric Palliative Care For Home Based Carers Funded by British High Commission, Pretoria Small Grants Scheme

2. Total Pain HIV/AIDS affects every dimension of a person’s life and causes not only physical pain but social, emotional and spiritual pain as well The same is true in children

3. Pain is one of the most important factors affecting the quality of life of a child with HIV throughout the child’s illness It is NOT just experienced at the end of life!

4. Physical Pain in Children with HIV HIV causes pain in two main ways: It directly damages various parts of the body It leads to a wide variety of different infections At various periods during the course of HIV infection, children are likely to experience pain Pain may be mild or severe, acute or chronic

5. Causes of Physical Pain  Procedures  Skin Breakdown  Skin Infections  Diarrhoea  Abdominal Pain  Sores/Abscesses  Headaches  Limb pain  Joint pain  Oral infections  Nerve Pain ©TALC

6. Pain in Children An adult  Will tell you he is in pain  Can describe the pain  Can locate the pain  Can tell you how severe it is A child  May be unable to talk  May be unable to express himself verbally  May find it difficult to describe or locate pain  May be afraid to tell you  “It just hurts”

7. Who is in Pain? ©TALC

8. Children and Pain  Children’s nervous systems do perceive pain  Children do experience pain  Children do remember pain  Children are not more easily addicted to morphine

9. Children and Pain All Children are different! Experience of pain may depend on:  Developmental stage  Past experience of pain  Fear/Anticipation of pain  Sense of control  Understanding of events  Emotional and physical condition of child and carer  Pain is what the child says it is!

10. Preventing Pain Children should not suffer with pain! This is possible in the majority of cases, through the ability to:  Understand how children experience pain  Anticipate when pain may occur  Recognise a child in pain  Assess the nature, severity and potential cause of the pain  Take prompt, appropriate action to alleviate pain  Monitor the child to ensure pain is alleviated All of this may be achieved within your scope of practice!

11. Assessing Pain: Posture  A child in pain will hold themselves very tightly  Curled up, foetal position  Movement makes the pain worse  A child who is comfortable will sleep in a more relaxed and open position  May move all but part of body in pain (arm/leg) ©TALC (Pearce, 2004)

12. Assessing Pain: Behaviour  Child in pain will remain distressed or upset after the wet nappy is changed and they have been fed  May be hard to console  May get worse when held and moved ©TALC (Pearce, 2004)

13. Assessing Pain: Interaction  Child in pain will be less likely to focus on the carer  Will not maintain eye contact  May be withdrawn  Much less likely to have smile in response to the carer’s voice  Ask the carer if they have noticed any change in the child ©TALC (Pearce, 2004)

14. Assessing Pain: Vital Signs  Fast Breathing  Fast Heart Rate  Low Blood pressure Whilst the child is at rest And/or There is no other identified cause May be signs of pain and distress ©TALC (Pearce, 2004)

15. Assessing Pain: Ability to Play  Children love and need to play  A child in pain may continue to play with mild-moderate pain  But observe them whilst they play  How easy it is for them to play? (Pearce, 2004)

16. Assessing Pain: Involve the Child All too often we think we know better than the child But, only the child can tell you:  How he is feeling  What he can tolerate  What would make him feel better Involving the child and giving them a sense of control helps them to cope better with pain and distress

17. Assessing Pain: Involve the Child  Observation of behaviour  Body Charts  Face Scale  Numeric Scales  Diaries  Colour Tools

18. Acute and Chronic Pain Acute  Sudden onset  Mild, moderate, severe  Short duration  Usually express pain verbally or through vocalizations (cries, scream) Chronic  Long duration  Mild, moderate, severe  May appear quiet, withdrawn, lack interest in activities or surroundings, reluctant to move, more clingy, difficulty sleeping

19. Assessing Pain  Think about the possibility of pain  Consider how the child may express pain  Observe the Child  Talk to the Child  Listen to the Child  Use pain assessment tools  Use the child’s own language (hurt, sore)  Talk to the carer  Listen to the carer

20. Principles of Pain Management Treat underlying cause of pain  If possible Plan Ahead: Don’t wait for pain to start or get worse!  Unnecessary distress for child and carers  Harder to get pain under control once it has started  Child may request more medication than necessary to prevent pain  Loss of trust between child and carer Consider and assess factors contributing to pain  Developmental stage, Understanding of events, Sense of control  Past experience of pain, emotional & physical condition

21. Principles of Pain Management Use pharmaceutical AND non-pharmaceutical methods  Distraction therapy  Use the least distressing route of administering medicine Involve the carer  Knows the child best  Need lots of support  Discuss management of pain with them Give regular medication (by the clock)  Pain is much managed much more effectively  Child does not experience so much pain  Builds trust

22. Non-Pharmaceutical Approaches  A child’s work is to play!  A child is happiest when playing  Play can distract the child from pain  Play can be used by children of all ages, even when they are too weak to get up

23. Managing Pain Pain is managed using an ‘analgesic ladder’ If pain is not managed at one stage, treatment must move to the next step!  Stage 1: Mild Pain  Stage 2: Moderate Pain  Stage 3: Severe Pain (World Health Organisation, 1998)

24. Stage 1: Mild Pain  Give a dose of paracetamol (Panado) for pain relief  Available as tablets, syrups, solution  Tastes OK  Safe doses for pain can be slightly higher than fever  Repeat every 6 hours if pain persists  Teach the carer how to measure the correct dose and administer the medicine Within your scope of practice!

25. Stage 2: Moderate Pain Children with HIV may well have pain that is not controlled by paracetamol alone. Move to Stage 2 management  Start treating the child with regular (not prn) paracetamol  In older children, half a paracetamol tablet can replace 10 ml syrup  If the pain is not controlled, add regular (not prn) codeine  Start codeine on the lower dose, gradually increasing depending on the child’s response, to the maximum dose Within your scope of practice!

26. Pharmaceutical Approaches WeightAge (only if you do not know the weight Pain Stage 1 Paracetamol 6 hourly Pain Stage 2 Add Codeine Phosphate syrup (25mg/5ml 6 hrly) Initial Dose Maximum 2 - <3kgUnder 2 mths2 ml0.2 ml1.0 ml 3 - <5kg2 to 6 mths2.5 ml0.3 ml2.0 ml 5- <8kg6 to 12 mths5 ml0.5 ml3 ml 8-<12kg1 to 3 Years7.5 ml1.0 ml5 ml 12-<16kg3 to 4 Years10 ml1.5 ml6 ml 16-<20kgOver 4 Years12.5 ml2 ml8 ml

27. Next Step! Children with severe pain may require more than Paracetamol and Codeine Morphine is a very effective drug but must be managed extremely carefully by professional nurses and doctors It may be given orally or intravenously

28. Side Effects of Morphine & Codeine Constipation  Should be addressed by doctor/professional nurse before it occurs with stool softeners or laxatives Itching  Can be quite distressing, particularly for a child  May require antihistamine and/or topical relief  Refer itching for appropriate treatment and management Sedation  Some patients may ‘benefit’ from sedative effects  May be reduced with some medication if desired  Carers must be warned of sedative effects and supported

29. Giving Medicine to Children Remember the 5 Golden Rules:  The Right Child  The Right Medicine  The Right Dose  The Right Route  The Right Time

30. Monitoring Any child in pain and requiring pain management must be monitored very closely  Has the pain been alleviated?  Has the pain increased?  Has the child’s overall condition deteriorated?  Is the care giver coping?  Is the care giver managing to give the analgesia?  Does the child require referral for further treatment?  Is the child experiencing any side effects to the medication?

31. Summary Children with HIV are very likely to experience pain Both during the course of their illness and at the end of life Whilst it is not usually within your scope of practice to administer medicines, you have a vital role to play in:  Preventing and Managing pain  Doing everything possible to ensuring the child is comfortable and not distressed  Ensuring the carer is supported