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Patient information

The course a disease takes depends substantially on the affected patients’ adherence to therapy. Chronic diseases in particular require a very long-lasting and consistent behaviour, which can mean far-reaching changes to the previous way of life. For this individual change to be successful, comprehensible and convincing patient information is necessary. This demand may sound trivial, but it is not. Often, patients describe the emergence of a chronic disease and the treatment thereof quite differently to the disease and therapy concepts of the treatment providers. Only if the perspective of the patients and the concepts of the treatment providers converge can therapeutic decisions be made on a mutual basis and implemented in a sustained manner.

 

In the age of the internet, there is no shortage of information on individual diseases. However, the quality of much of the information is frequently deficient. The available flood of information can also lead to uncertainty, particularly if the information is incomprehensible or even contradictory. The contents of good patient information should, on the one hand, cover the sufferers’ information needs, and on the other hand be prepared in a manner that is appropriate to the target group. In this respect, it is important to keep in mind language level, prior knowledge and other aspects specific to the people being addressed.

 

Personal reports by sufferers about their experiences with a disease and their individual way of dealing with it also constitute important patient information. They can provide an example of how to cope with a disease and how to reconcile it with one’s life. Patient information understood in this way can equally offer pragmatic life counselling and emotional support.

 

In the projects, various ways of informing patients are developed and tested.