Palliative care for children and family with hiv nairobi presentation

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Palliative care for children and family with hiv nairobi presentation

  1. 1. PALLIATIVE CARE FOR CHILDREN AND FAMILY WITH HIV/AIDS1 Dr Ludoviko Zirimenya Hospice Africa Uganda
  2. 2. OUTLINE Background of Hospice Africa Uganda What is children’s Palliative care? Some facts and figure Basics of children’s palliative care Symptom control Caring for children at end of life 2
  3. 3. HOSPICE AFRICA UGANDA Started 1993 4th Hospice in all of Africa Founded by Dr Anne Merriman 3FRCP 3 staff with salaries for 3 months
  4. 4. TODAY …CENTER OF EXCELLENCE FORPALLIATIVE CARE 4
  5. 5. WHAT IS CHILDREN’S PALLIATIVECARE? Palliative care for children is the active total care of the childs body, mind and spirit, and also involves giving support to the family (WHO) 5
  6. 6. CONTINUUM OF CARE 6
  7. 7. MULTIDISCIPLINARY APPROACH 7
  8. 8. SOME FACTS AND FIGURES…• Today, nearly all child deaths occur in developing countries, almost half of them in Africa• AIDS and cancer are the two commonest incurable childhood diseases in Africa• HIV/AIDS directly responsible for up to 60% of child deaths in Africa where more than 400,000 children under 15 died of AIDS in 2003 alone 8
  9. 9. …SOME FACTS AND FIGURES• Children infected with HIV/AIDS in Uganda have a mortality rate of 54%• The incidence of cancer is increasing due to the additional burden of HIV-associated cancers• HIV/AIDS is now responsible for 332,000 child deaths in Africa, nearly 8% of all child deaths in 9 the region
  10. 10. BASICS OF CHILDREN’S PALLIATIVECARE1. Communication2. Play and development3. Assessment and management planning 10
  11. 11. COMMUNICATING WITHCHILDREN… Children speak 3 languages: body language, play language and spoken language Never underestimate a child Always be honest and never make promises that you cannot keep Communication is a team issue: dysfunctional teams cause dysfunctional communication which causes dysfunctional care 11
  12. 12. …COMMUNICATING WITHCHILDREN No evidence that unwanted communication is harmful Open communication with children and their families improves professional job satisfaction and reduces burnout Mind your language; smile, make yourself smaller, respect their space and be non threatening 12
  13. 13.  From practice guide EOL and planning for 13 children and young people with life limiting conditions
  14. 14. PLAY AND DEVELOPMENT Adults talk, children play Play is the single most important way that children manage stress Even sickest child can be helped to play All children must have time and place to play, avoid painful procedures in play areas 14 Play encourages physical development
  15. 15. LET CHILDREN BE CHILDREN 15
  16. 16. ASSESSMENT AND MANAGEMENT… Aims of assessment:1. Provide factual information on the child2. Explore ideas, concerns and expectations3. Develop a clear problem list4. Discuss and agree a clear management plan 16
  17. 17. …ASSESSMENT AND MANAGEMENT Good children’s palliative care management planning means hoping for the best and planning for the worst To withhold important information from our patients is immoral, unethical and negligent 17
  18. 18. 5 STEPS TO EXCELLENTCHILDREN’S PALLIATIVE CARE1. assess the child and family holistically2. develop a problem list covering physical, psychosocial and spiritual needs3. Design a management plan for each of these problems4. Carry out the management plan 185. Review and adapt the problem list and management plan as things progress
  19. 19. SYMPTOM CONTROL Four rules of symptom controlI. Don’t panicII. Immaculate assessment ( physical, psychological, familial, social, spiritual, financial, and the community )III.Hope for the best and prepare for the worst 19IV.Treat what you can treat
  20. 20. TOTAL PAIN TOTAL PAIN encompasses: Physical, uncontrolled pain Emotional pain due to anxiety, sadness, anger or fear Social due to career strain, loss of confidence, fear and distress Spiritual pain due to anguish, suffering, hopelessness and meaninglessness 20
  21. 21. ASSESSING PHYSICAL PAIN INCHILDREN… FACES pain scale for children 21
  22. 22. …ASSESSING PHYSICAL PAIN INCHILDREN Jerry can scale 0 1 2 3 4 5 No pain Mild More Moderat Severe Overwhel 22 pain pain e pain pain ming pain
  23. 23. NON PHARMACOLOGICALMANAGEMENTI. DistractionII. Guided imageryIII. Music and danceIV. Muscle relaxationV. Massage and physical therapy 23
  24. 24. PHARMACOLOGICALMANAGEMENT… 24
  25. 25. …PHARMACOLOGICALMANAGEMENT 25
  26. 26. CARING FOR CHILDREN AT THEEND OF LIFE Good palliative care neither hastens nor postpones life Anticipate EOL symptoms and prepare patient and family Open and honest communication at all times Adjust morphine and other drugs accordingly 26 Priority to ensure child dies in comfort and dignity
  27. 27. IT IS POSSIBLE 27
  28. 28. QUESTION FOR YOU Take a moment to think about all of the children you have seen who have life-limiting illnesses. Is there more you could have done to help relieve their suffering? 28
  29. 29. DAME CICELY SAUNDERS “You matter Because You Are YOU...& To The Last Moment of Your Life And We Will Do All That We Can To Help You To LIVE until You die” 29
  30. 30. LETS BEGIN THE WALK 30
  31. 31. REFERENCE Practice guide EOL and planning for children and young people with life limiting conditions, Scotland Justin A.,2009. CHILDREN’S PALLIATIVE CARE IN AFRICA. Oxford: Oxford university Merriman A.,2012. PAIN AND SYMPTOM CONTROL IN THE CANCER AND/OR AIDS PATIENT IN UGANDA AND OTHER AFRICAN COUNTRIES. Blue book HOSPICE AFRICA UGANDA Some slides and photos were taken from presentations by Prof Anne Merriman, Dr Eddie Mwebesa Beating pain: African Palliative care Association (APCA) pocket guide. 31

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