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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