The management of haemophilia, in common with many other inherited, chronic disorders, has witnessed enormous advances and improvements. The quality of life enjoyed by children with haemophilia is excellent. To realize these benefits, however, expectations are placed on parents to administer intravenous treatment at home. The frequency of required treatment can be as often as alternate days.
The role of implantable venous access devices has made venous access in young children at home a realistic procedure. This is a highly complex skill for the lay person to undertake, and comprehensive parental teaching and standardized written information are necessary.
A teaching package has been created that commences with theoretical instruction and moves onto practical training. On-going assessment is then carried out at regular intervals in the home environment.
Not only does this package provide a formal framework for instruction, it also facilitates emotional support for both the child and parents, which can be given in a planned manner.
Nurses are professionally accountable for the information and teaching they give. This package documents the process of training undertaken and standardizes the level of information given. Thereby providing reassurance to nurses that they have fulfilled the professional requirements placed on them.
Currently, there is no other source of information about implantable venous access devices for the lay carer. This package could be of value in other chronic conditions that incorporate an element of intravenous home care.