palliative care for children and family with hiv nairobi presentation
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PALLIATIVE CARE FOR CHILDREN AND FAMILY WITH HIV/AIDSDr Ludoviko Zirimenya
Hospice Africa Uganda
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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
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HOSPICE AFRICA UGANDA
Started 19934th Hospice in all of AfricaFounded by Dr Anne Merriman FRCP3 staff with salaries for 3 months
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TODAY …CENTER OF EXCELLENCE FOR PALLIATIVE CARE
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WHAT IS CHILDREN’S PALLIATIVE CARE?
Palliative care for children is the active total care of the child's body, mind and spirit, and also involves giving support to the family (WHO)
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CONTINUUM OF CARE
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MULTIDISCIPLINARY APPROACH
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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
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…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 the region
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BASICS OF CHILDREN’S PALLIATIVE CARE
1. Communication
2. Play and development
3. Assessment and management planning 10
COMMUNICATING WITH CHILDREN…
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
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…COMMUNICATING WITH CHILDREN
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
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From practice guide EOL and planning for children and young people with life limiting conditions
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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
Play encourages physical development 14
LET CHILDREN BE CHILDREN
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ASSESSMENT AND MANAGEMENT… Aims of assessment:
1. Provide factual information on the child
2. Explore ideas, concerns and expectations
3. Develop a clear problem list
4. Discuss and agree a clear management plan
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…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
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5 STEPS TO EXCELLENT CHILDREN’S PALLIATIVE CARE
1. assess the child and family holistically
2. develop a problem list covering physical, psychosocial and spiritual needs
3. Design a management plan for each of these problems
4. Carry out the management plan
5. Review and adapt the problem list and management plan as things progress
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SYMPTOM CONTROL
Four rules of symptom control
I. Don’t panic
II. Immaculate assessment ( physical, psychological, familial, social, spiritual, financial, and the community )
III.Hope for the best and prepare for the worst
IV.Treat what you can treat 19
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
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ASSESSING PHYSICAL PAIN IN CHILDREN…
FACES pain scale for children
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…ASSESSING PHYSICAL PAIN IN CHILDREN
Jerry can scale
0 1 2 3 4 5
No pain Mild pain
More pain
Moderate pain
Severe pain
Overwhelming pain
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NON PHARMACOLOGICAL MANAGEMENT
I. Distraction
II. Guided imagery
III. Music and dance
IV. Muscle relaxation
V. Massage and physical therapy
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PHARMACOLOGICAL MANAGEMENT…
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…PHARMACOLOGICAL MANAGEMENT
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CARING FOR CHILDREN AT THE END 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
Priority to ensure child dies in comfort and dignity
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IT IS POSSIBLE
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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?
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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”
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LETS BEGIN THE WALK
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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.
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