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Palliative Care for Children

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To carry out a survey of paediatric palliative care in South Africa , and in Africa. To promote the development of palliative care programmes for children and ... – PowerPoint PPT presentation

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Title: Palliative Care for Children


1
Palliative Care for Children Young People in
South Africa
  • Joan Marston
  • Liz Gwyther
  • Hospice Palliative Care Association of SA

2
Objectives of the HPCA paediatric committee
  • To carry out a survey of paediatric palliative
    care in South Africa , and in Africa
  • To promote the development of palliative care
    programmes for children and young adults
  • To develop a comprehensive Guideline on PPC
  • To pilot, implement and evaluate the Guideline in
    South Africa and 3 other African countries
  • To advocate for palliative care for children and
    young people

3
Objectives of the HPCA paediatric committee
  • To identify different models of care
  • To participate in the development of a Paediatric
    Outcome Scale for Africa
  • To promote specific education and the development
    of African literature
  • To facilitate the development of a South African
    and African Childrens Palliative Care Network
    together with the ICPCN
  • To oversee the ICPCN office in South Africa
  • To co-ordinate a paediatric palliative care
    development committee

4
Why a different approach?
  • Children and young people with life-limiting
    conditions have very specific palliative care
    needs that are often different from those of
    adults.
  • Childrens palliative care must always be
    provided within the context of changing growth
    and development ,that affects the way the child
    experiences their condition or loss their
    clinical treatment, and the approach of staff and
    volunteers.
  • Thus play and education are integral to PPC

5
The voices of these Children must be heard,
acknowledged and respected as part of the
worldwide palliative care movement!
Korea Declaration
6
WHO Definition of Palliative Care for Children
  • Palliative care for children is the active total
    care of the childs body, mind and spirit, and
    also involves giving support to the family.
  • It begins when illness is diagnosed, and
    continues regardless of whether a child receives
    treatment directed at the disease.
  • Health providers must evaluate and alleviate a
    childs physical, psychological and social
    distress.

7
WHO Definition of Palliative Care for Children
  • Effective palliative care requires a broad
    multidisciplinary approach that includes the
    family and makes use of available community
    resources it can be successfully implemented
    even if resources are limited.
  • It can be provided in tertiary care facilities,
    in community health centres, and even in
    childrens homes. (the childs own home,
    community home or institution)

8
  • Palliative care for children and young adults may
    take place over many years.
  • It is provided for children with life-limiting,
    life-threatening, and chronic conditions.
  • Care always includes the family or guardian and
    the childs friends
  • Staff and volunteers require specific education
    and training
  • Access to paediatric drugs and formulations
  • Palliative care is based on paediatric care
  • Includes developmental support

9
Conditions include
  • Conditions for which cure is a possibility- some
    cancers
  • Genetic, congenital, metabolic conditions
  • Incurable and progressive conditions - DMD
  • Chronic , well-managed conditions HIV with
    HAART
  • Severe, life-limiting disability
  • severe cerebral palsy

10
Childrens Palliative Care in Africa
X
Uganda
31
Zimbabwe
31
36
24
28
15
11
The present situation in South Africa
  • 350 000 children HIV
  • 50 will die before 1 year if untreated
  • 200 children born HIV daily
  • 15 000 childrens deaths per annum due to cancer
  • 1 600 000 children orphaned because of AIDS
  • 21 of total population between 15 49 are HIV
    the parent generation
  • 42 of population is under 18 years
  • 70 of children live in poverty

12
1/3 of todays 15 year old children will die of
AIDS if untreated
GODFREY
13
Comprehensive paediatric palliative care
programmes in SA
  • Cotlands in Johannesburg, and Somerset West
  • Ingwavuma Orphan Care
  • Themba Care
  • Beautiful Gate
  • Soweto Hospice
  • Bigshoes
  • St Nicholas Childrens Hospice

14
  • Staff competent in paediatric palliative care
  • Programmes that provide care along a continuum.
  • IPU beds or access to hospital beds
  • Active, regular paediatric medical input
  • Developmental care included in assessment, care
    plans and programmes
  • Child or youth-friendly facilities
  • Access to paediatric medications
  • Paediatric forms, policies, procedures etc
  • IDT that includes child specialist members
  • OVC support
  • Protection of childrens rights
  • Psycho-social and spiritual care
  • Childhood/adolescent bereavement approach
  • Family/guardian support
  • Relevant training

15
Archbishop Desmond Tutu …..
  • We are made for the sublime, the transcendent.
    We are not bound to the earth and a humdrum
    existence but are made for something truly
    glorious We are not mere chickens but eagles
    destined to soar to sublime heights we are made
    for freedom and laughter and goodness and love
    and eternity, despite all appearances to the
    contrary. We should be straining to become what
    we have in us to become to gaze at the rising
    sun and lift off and soar.
  • Fly, Eagle, Fly

16
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17
Preparing our children to deal with dying, death
and bereavement in the context of HIV /
AIDS Linda Ganca HPCA
18
Healing childrens grief
  • Relieving the painful feelings of the grief
    experience
  • Helping the child and family to adapt and
    integrate the new reality

19
Continuous interactions
  • Throughout illness and death to inform and
    prepare child and family
  • Interactions to acknowledge and validate feelings
    and to give meaning to the feelings
  • Support parents in their own grief and in
    attending to their childrens mourning

20
  • Construction of a legacy incorporating memories,
    experiences, wishes, fantasies
  • of child, parents and siblings
  • Reconstitution of individual and family life

21
Adult Involvement
  • Supportive role Physical, emotional, spiritual
    intellectual
  • Protectors and role models
  • Therefore we cannot separate children from adults

22
It takes a village to raise a child
23
And a community to care
24
Adult Self - Awareness
  • Own childhood grief
  • Identify what still hurts
  • Listening skills
  • Congruency
  • Unconditional positive regard

25
Stages of Development
  • Sensori-motor stage (0-3yrs)
  • Pre-operational stage (3-8yrs)
  • Concrete operational stage (8-13yrs)
  • Formal operational stage (13- adulthood)

26
What to do?
  • Involve the child early
  • Acknowledge childs grief
  • Observe behaviour change that may indicate that
    the child is grieving
  • Create safe and healthy ways to explore feelings

27
  • Give child PERMISSION to express feelings of
    grief
  • Expect reactions they are NORMAL
  • Normalise and validate reactions and feelings
    Name emotions

28
  • SILENCE Use it most of the time
  • Address concerns honestly
  • Reassure Ongoing care and support

29
Programmes
  • Training Caregivers
  • Family Members
  • Teachers
  • Health Care Professionals
  • Volunteers

30
Creative Media
  • Useful means to express feelings
  • Memory Books
  • Memory Boxes
  • Games
  • Telling Stories

31
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32
  • Drawing
  • Writing
  • Drama
  • Music
  • Sport

33
Other effective activities
  • Hero Book
  • Body map
  • Formal bereavement counselling
  • Wilderness retreats
  • Support groups

34
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35
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36
THANK YOU liz_at_hpca.co.za lganca_at_cormack.uct.ac.za
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