To Örebro University

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.