Transforming the experience of illness into action – Patient and spouses experiences of involvement in a patient and family advisory council

Abstract

ObjectiveThe objective was to explore patients' and spouses' perception and attitudes towards participating in a patient and family advisory council. MethodsA qualitative study with interviews conducted within a phenomenological-hermeneutical frame, inspired by Ricoeur were conducted with current and former participants (patients and/or spouses) of a patient and family advisory council in Denmark. ResultsIn total, 16 participants were interviewed (12 former patients/four spouses) with a mean age of 68 (range 49–79) and 44 % women. After the analysis, perceptions and attitudes towards participating in a patient advisory council emerged in four themes; "Payback", "A personal invitation", "A safe and equal atmosphere", and "Sharing, caring, and healing". ConclusionParticipants of an advisory council express a need for "paying it back" to the health care system. When being part of the advisory council, the participants expressed feeling a genuine engagement and interest from the health-care professionals – leading to a feeling of being equal and taken seriously. The advisory council increased the process of recovery by sharing narratives with peers. Practical valueExperiences of being part of an advisory council lead to an understanding of "why" former patients and spouses participate. This knowledge can help others to recruit members.