A comparison of the concept of patient participation and patients' descriptions as related to healthcare definitions.

PURPOSE. To depict what patients describe as patient participation and whether descriptions of patient participation are affected by gender, age, healthcare contact, and duration of disease. DATA SOURCES. Current patients (n= 362) responded to a questionnaire on participation. DATA SYNTHESIS. Patients' descriptions focused on having knowledge, rather than being informed, and on interacting with health professionals, rather than merely partaking in decision making. CONCLUSIONS. Patients' descriptions of participation correspond with the International Classification of Functioning, Disability and Health's definition, which includes "being involved in a life situation." Healthcare legislation and professionals employ a narrower concept of patient participation as defined by, e.g., Medical Subject Headings. PRACTICE IMPLICATIONS. Findings suggest that health professionals need to embrace what patients describe as participation.