The Meaning of Patient Participation for Patients and Nurses at a Nurse-Led Clinic for Chronic Heart Failure

Background: The legislation of many Western countries emphasizes active patient participation. Patients with chronic heart failure (CHF), however, have experienced participation differently from the general interpretation of legal definitions. Education improves uptake of self-management strategies yet knowledge is lacking about support of patients' own resources in CHF. Aim: To explore the phenomena of patient participation and non-participation as shown in patient visits to a nurse-led clinic for CHF and as experienced by the patients and nurses. Methods: Data triangulation of field notes from participatory observations and texts from narrative interviews with the patients and assigned nurse specialists. Data were analyzed according to the phenomenological hermeneutic tradition. Findings: Patients' experience of participation and non-participation was interpreted as “Being responsible and accepting responsibility” and “Lacking an equal relationship while being controlled”, respectively. Nurses experienced patient participation as “Getting information and security to act” and patient non-participation as “Not accepting”. Conclusion: 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.