Patient/client participation – adaptability into the system?

Through the last 35 years "patient/client involvement" have been a mantra within health policies and stated objectives in education curriculums and institutional object clauses; - although different terms are used: "patient-centered", "inclusion", "participation", "influence", "respect for patient autonomy" etc. All terms used as a kind of management and control based on user perspectives, democracy, influence, quality assurance and development.

In the setting of home care there also is an expectation of involvement of both the elderly and the caregivers. But what does it actually imply in practice? This question seems immediately unclear even though politicians, professionals and the elderly and their relatives find it important and meaningful. Who can be against involvement? But does patient/client participation suppose to mean:

1. That the elderly can determine when and which professionals should come in his home?

2. That the elderly can determine who he wants talk to?

3. That the elderly themselves can decide whether he will sleep at daytime and be awake at night?

4. That the elderly themselves can decide how he will be given help and at what time?

5. etc.

Based on a pilot project, including observations of an elderly person's everyday life in dependency on health professionals and interviews with the involved actors, this paper will discuss the meanings of participation from the perspectives of health professionals, the elderly and their relatives.