The Phenomena of Participation and Non-Participation in Health Care-Experiences of Patients Attending a Nurse-Led Clinic for Chronic Heart Failure

BACKGROUND: Patient participation is stressed in the health care acts of many western countries yet a common definition of the concept is lacking. The understanding of experiences of patients with chronic heart failure (CHF) who attend nurse-led specialist clinics, a form of care suggested as beneficiary to this group, may promote a better understanding of participation. AIM: To investigate the meanings of participation and non-participation as experienced by patients living with CHF. METHODS: Narrative interviews analysed in the phenomenological hermeneutic tradition inspired by Ricoeur where the interpretation is made in the hermeneutic circle, explaining and understanding the experienced phenomena. FINDINGS: Participation was experienced as to "be confident", "comprehend" and "seek and maintain a sense of control". Non-participation was experienced as to "not understand", "not be in control", "lack a relationship" and "not be accountable". The findings indicate that the experiences of participation and non-participation can change over time and phases of the disease and treatment. CONCLUSION: 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.