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

  • Michael Macht University of Wuerzburg
  • Christian Gerlich
  • Heiner Ellgring
  • The Infopark Collaboration
Keywords: information needs, old persons, Parkinson's disease, information giving, health care

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

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Author Biographies

Michael Macht, University of Wuerzburg
Michael MACHT has undertaken research into the psychological aspects of ParkinsonŽs Disease and has also been involved in the development of psychological interventions for PD patients and their carers as well as for patients suffering from other chronic diseases.
Christian Gerlich
Christian GERLICH has undertaken cross-cultural research on PD in Spain and Germany as well as on gender differences in the use of health services.
Heiner Ellgring
Heiner ELLGRING is member of the Psychological Advisory Board of the German PD Association (dPV), and co-editor of the EPDA magazine (European PD Association). He has considerable experience with research on psychological and social aspects of PD and other psychological and neurological disorders.
The Infopark Collaboration
The INFOPARK collaboration is an interdisciplinary group of researchers from seven European countries (United Kingdom, Finland, Spain, Estonia, Greece, Spain and Germany). The group is carrying out a project on information needs in older persons with PD and their carers supported by the EU.
Published
2003-01-31
How to Cite
Macht, M., Gerlich, C., Ellgring, H., & Infopark Collaboration, T. (2003). Information Needs in Older Persons with Parkinson’s Disease in Germany: A Qualitative Study. Forum Qualitative Sozialforschung / Forum: Qualitative Social Research, 4(1). https://doi.org/10.17169/fqs-4.1.760