Information Needs in Older Persons with Parkinson's Disease in Germany: A Qualitative Study

Abstract

The study addressed the following questions: (1) What are the information needs of older people with Parkinson's disease (PD) and how can these needs be classified? (2) How effectively do persons with PD perceive professional information/communication giving? (3) Do information needs change over the stages of the disease? Data were collected in semi-structured conversational style interviews in three clinics as well as at home in two rural and urban areas in Germany. 33 persons with PD over 65 years of age with low, medium and high severity of disease participated voluntarily. The findings can be summarized as follows: (1) Information needs of older persons with PD refer to identifiable themes and contexts. Based on different motives a minority of participants expressed no information needs. (2) Various sources of information useful for persons with PD were identified (information from professionals, audiovisual material, written material, information given by members of the family, friends and other patients). (3) Information needs change over the phases of the disease. (4) Persons with PD described positive and negative experiences with information giving / communication by professionals and made various recommendations which may help to improve professional care. Four measures can be suggested to improve information giving and communication. First, any attempt to give information should be preceded by an assessment of the actual state of information needs of the person with PD. Second, for some persons with PD it may be indicated to postpone giving information to a later more appropriate time. Third, the most adequate information for a given person has to be selected from a variety of sources. Fourth, professionals should encourage active seeking of information and contacts between persons with PD. Fifth, information giving is most effective, (1) if patients and professionals meet at regular time intervals, (2) if professionals foster an atmosphere of confidentiality, openness and encouragement, (3) if information and interaction are adapted to the person with PD, and (4) if the information given is comprehensible. URN: urn:nbn:de:0114-fqs0301176