Information needs of elderly patients with Parkinson
A. ANDR. THEODOROPOULOU, I. KONTOGEORGAKI, S. KASTANA, A FOTAKOPOULOU, T. SOLOMOS, P. THEODORAKOPOULOS, INFOPARK PROJECT COLLABORATION
Health Center Of Chalandritsa
Parkinson's disease is a progressive neuro-degenerative disorder, which affects movement or the control of movement, including speech and "body language". Over recent years, communication and information have increasingly been considered important in helping people to cope with their disease.
Aim: Classify the information needs of older people affected by Parkinson's Disease, ascertain (i) how sufferers perceive the effectiveness of professional communication/information giving and (ii) their degree of involvement in decision making.
Method: In-depth interviews, focusing on the patients' experiences of information about their illness from first symptoms through to diagnosis and treatment, were carried out in the patient's home using a semi-structured interview guide. Interviews were audiotaped, transcribed, and analysed according to content analysis. Emerging themes (or categories) were developed by studying the transcripts repeatedly and considering possible meanings.
Results: Information needs were mainly identified at the initial stages of the disease whereas we did not observe the same needs at later stages of the disease. Patients required information on pharmacological treatment and believed that it is important for Parkinson patients to be informed about everything and how to get on with their disease, in order to be able to deal with the disease in the best possible way, stop the disease progressing and possibly to prevent other physical and emotional consequences of the disease. Their preference with regard to mode of information-giving were leaflets, TV programmes and telephone conversations. However most patients claimed to have difficulty communicating with their doctors and as a result they did not receive adequate information.
Conclusion: Although it is not based on a statistically representative sample, this study provides insights into the importance of information and can be useful into making recommendations for service developments which would lead to improved quality of life, functional independence, greater empowerment of people with Parkinson and other chronic diseases.
Key words: Parkinson, information needs, quality of life, elderly patients.