RESEARCH – February 2014

Patients as information seekers: challenges, opportunities and threats. A case of patients with Parkinson’s disease

Authors: Kadi Lubi, Triin Vihalemm, Pille Taba

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Background and aims. There has been a change in the management of communication in chronic diseases: patients have a possibility of but also a responsibility for their disease related decisions. This brings disease related information needs and information seeking (behaviour) to the focus. Our aim was to study how and to what extent the independence and activity of patients should be supported.

Methods. We used both a quantitative (questionnaire) and a qualitative (open answers and in-depth interviews) approach to survey patients’ communication activities in seeking information.

Results. Information seeking activity is related to previous media consumption. There is relationship between information seeking activity and gender: women tend to be more active in this respect. Also there is relationship between length of disease and membership of a patients’ society. In addition to illness related information, it is also important to provide information about coping with the disease situation.

Conclusions. Relevant information on a situation and contextual basis should be available from different sources (including the Internet and the mobile phone) and in appropriate proportions. If this condition is not fulfilled, information will be neglected due to lack of perspective.