9º World Congress on Health Information and Libraries

Salvador, Bahia - Brazil, September, 20 to 23 - 2005


4th Regional Coordination Meeting of the VHL

September, 19 to 20 - 2005

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.