Information, health & social needs of older, disabled people (parkinson's disease) and their carers.

A classified index of information sources, materials & good practice and a bibliographic database of both general and Parkinson's disease-specific material were developed. Over 12,000 entries were made during the project. This acts as a resource to those interested in the subject area. A review of literature relating to the information needs of older disabled people with Parkinson's disease and their carers identified few publications. However, much of the generic literature was found to be relevant, as were many papers written for patients with cancer. A recurring theme was that the chronically ill can benefit from more information, enabling a clear understanding of symptoms, reasons for the condition, prognosis, possible management options and available services. This should be given in simple non-technical language, backed-up with written information and recommendations for further reading. Electronic media is already a major information source for carers and a growing area for older patients. There is much interest in the concept of the "expert patient" and to information provision as a means of empowering older people to play a more active role in their management. These findings influenced the development of the subsequent patient and carer interviews.

The results of the theoretical and empirical research informed development of information material for patients, carers and health professionals. These follow recognised guidelines, aiming to be concise, with a structured design, appropriate illustration and non-alarmist, non-patronising language. Topics are grouped under the broad headings of: Learning about your illness/What carers need to know Getting on with life Asking the right questions to the right people Where to get more information Issues of relevance to carers Information for professionals Drafts of the 42 infosheets, each addressing a particular topic, were developed in English, piloted with experts and users throughout Europe and modified in the light of their comments. Once satisfactory versions had been produced, they were translated into 6 other languages, with appropriate modifications to address national and cultural differences. The material is designed to support and reinforce what is discussed in face-to-face contacts between users and professionals and is available in traditional paper copy, electronic format and via the Internet.

Based on the empirical and theoretical findings, a series of policy recommendations were developed that would have national and Europe-wide relevance. These highlighted the need for greater focus upon chronic conditions as a major priority within health care policy. This has considerable implications for resource allocation. The elimination of stigma and negative stereotyping should be given greater priority and there should be improved exchange of information about evidence-based management and models of best practice. There is need for easier access to general and specific information for patients that can be tailored to their individual needs. The role of informal family carers needs greater recognition and support through improved information. All health and social care professionals require specific training in communication and information giving and this should have greater emphasis in formal education and continuing professional development. Financial support should be more readily available for developing and disseminating information materials and for patient and carer education initiatives. User organisations play an important role in information giving and support and their role needs greater recognition and respect from statutory authorities. Multidisciplinary team management of chronic diseases should be available locally to all.

Interviews concerning their views on information needs were undertaken with 455 older people with Parkinson's disease and their family caregivers, as well as focus group discussions with 291 health and social care professionals. Qualitative content analysis was performed on the basis of key themes. Most patients and carers felt that information given at time of diagnosis had been inadequate and many were left to seek information on their own. There was felt to be over-emphasis on drug management and respondents were appreciative especially of practical advice. Provision of care within a multidisciplinary setting & regular contact with PD Nurse Specialists were much valued. Face-to-face discussion with a specialist doctor able to provide accurate information, using simple, non-technical language was the preferred approach, backed up by written information (in the home language). The need for protected time for information giving in every consultation was emphasised. PD Associations were recommended as informed, user-focused and accessible. The focus groups with professionals identified poor communication between professionals, lack of specialist knowledge and lack of time and resources as major barriers to effective information giving and need for more training in communication skills was recognised.

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