This study explored patients' experiences of participation and non-participation in their health care. A questionnaire-based survey method was used. Content analysis showed that conditions for patient participation occurred when information was provided not by using standard procedures but based on individual needs and accompanied by explanations, when the patient was regarded as an individual, when the patient's knowledge was recognized by staff, and when the patient made decisions based on knowledge and needs, or performed self-care. Thus, to provide conditions for true patient participation, professionals need to recognize each patient's unique knowledge and respect the individual's description of his or her situation rather than just inviting the person to participate in decision making.

The study suggests an extended view on the concept of participation. Patients' experiences of participation in health care can vary and should therefore be an issue for dialogue between nurses and patients with CHF in nurse-led specialist clinics.

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.

Conflicting values of patients and nurses, which were interpreted with respect to participation and non-participation, presumably might influence patient information and education negatively. The issue of participation should be raised as a means of attaining concordance and to facilitate patient participation with education specifically tailored to the individual patient's needs.