Support for the family

The needs of children and young people with a life threatening illness and their families are summarised in the report by ACT and the Royal College of Paediatrics and Child Health. Families need support from the time of diagnosis and throughout treatment, as well as when the disease is far advanced. Professionals must be flexible in their efforts to help. Each family and individual within a family is unique, with different strengths and coping skills. The needs of siblings and grandparents should be included. The family of a child with an inherited condition have additional difficulties. They may have feelings of guilt and blame, and they will need genetic counselling and information about prenatal diagnosis in the future. When an illness does not present until some years after birth, several children in the same family may be affected.

Families who maintain open communication cope most effectively, but this is not everyone's pattern. Children almost always know more than their parents think, and parents should be encouraged to be as honest as they can. Play material, books, and other resources can be supplied to help with communication, and parents can be helped to recognise their children's non-verbal cues.

Sick children need the opportunity to maintain their interests and to have short term goals for as long as possible. Play and education is an essential part of this, as they represent the normal pattern and help children to continue relationships with their peers. Providing information and support to teachers facilitates this.

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