An Information Model for Cystic Fibrosis (CF) Patients and Carers
University of New England, Armidale, New South Wales - Australia
…it is often forgotten that most healthcare is self care… Vickery & Lynch (1995:551)
In Australia, Cystic Fibrosis (CF) is the most common serious genetic condition in children today affecting one in every 2,500 births. The nature of chronic diseases requires collaborative care from a team of professionally qualified clinical staff and family carers. To meet the challenge of CF a family carer and patient need the knowledge and training to participate in the daily treatment regimen. In the last five years, the Internet has also been gaining ground as a source of information for chronic conditions (Harris 2004). However, people are suffering from an overload of information that is being made available on the Internet. This research presents a model that illustrates the many information sources required to support CF patients and carers over the stages of the disease, and provides a framework for dissemination of information by healthcare providers.