Paediatric Palliative Care is a term used to describe the care and support that is provided to children or young people who have a life threatening illness and their families. (Reference http://www.togetherforshortlives.org.uk/assets/0000/4089/CPC_definitions.pdf)

"Palliative care for children and young people with life-limiting conditions is an active and total approach to care, from the point of diagnosis or recognition, embracing physical, emotional, social and spiritual elements through to death and beyond. It focuses on enhancement of quality of life for the child/young person and support for the family and includes the management of distressing symptoms, provision of short breaks and care through death and bereavement”. 

Palliative care does not mean withdrawing treatment. Palliative care works alongside families to plan and coordinate the changing goals of care throughout a child’s illness. These goals of care may include managing difficult symptoms (for example pain) in addition to helping all members of the family to maintain their activities of daily living in as normal routine as possible. To achieve this goal, families are supported to care for their child at home as often as possible. To enable this palliative care can:
  • Provide home visits by the palliative care team. This may include medical, nursing, social work, physiotherapy, occupational therapy or play therapy. This can be provided via telehealth* on a needs basis.
  • Coordinate home care by linking families with available hospital and community services.
  • Provide information for available respite options (for example Bear Cottage in Manly) http://www.bearcottage.chw.edu.au/.
  • Provide school visits to help teachers and other staff facilitate and understand the support that is needed to allow a child with a life limiting illness attend school. These visits can also encompass the support that may be required for siblings.
  • Provide bereavement support for parents, siblings and other extended family members.
     
There may be times when some families feel uncomfortable or unable to care for their child at home and an admission to hospital may be necessary. Palliative care is also able to support care in this setting.

*Telehealth is the use of technology via the internet using iPad’s or other computer devices to communicate by videoconference between the home and hospital. 


  
 

SUPPORTING FAMILIES TO CARE FOR A CHILD WITH A LIFE LIMITING ILLNESS