Palliative Care for Children

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Palliative Care for Children Young People in
South Africa

• Joan Marston
• Liz Gwyther
• Hospice Palliative Care Association of SA

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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

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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

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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

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The voices of these Children must be heard,
acknowledged and respected as part of the
worldwide palliative care movement!
Korea Declaration
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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.

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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)

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• 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

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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

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Childrens Palliative Care in Africa
X
Uganda
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Zimbabwe
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36
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28
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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

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1/3 of todays 15 year old children will die of
AIDS if untreated
GODFREY
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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

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• 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

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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

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Preparing our children to deal with dying, death
and bereavement in the context of HIV /
AIDSLinda Ganca HPCA
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Healing childrens grief

• Relieving the painful feelings of the grief
  experience
• Helping the child and family to adapt and
  integrate the new reality

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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

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

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Adult Involvement

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

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It takes a village to raise a child
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And a community to care
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Adult Self - Awareness

• Own childhood grief
• Identify what still hurts
• Listening skills
• Congruency
• Unconditional positive regard

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Stages of Development

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

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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

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

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

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Programmes

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

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Creative Media

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

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• Drawing
• Writing
• Drama
• Music
• Sport

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Other effective activities

• Hero Book
• Body map
• Formal bereavement counselling
• Wilderness retreats
• Support groups

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THANK YOUliz_at_hpca.co.zalganca_at_cormack.uct.ac.za