Transforming the experience of illness into action – Patient and spouses experiences of involvement in a patient and family advisory council. Issue 6 (June 2021)

• Record Type: Journal Article
• Authors: Missel, Malene; Hansen, Malene Haugaard; Petersson, Nadja Buch; Forman, Jacqueline; Højskov, Ida Elisabeth; Borregaard, Britt
• Is Part Of: Patient education and counseling. Volume 104:Issue 6(2021)
• Page Start: 1481
• Page End: 1486
• Publication Date: 2021-06
• Subjects: Patient engagement -- Advisory council -- Patient involvement -- Organisational patient engagement; Patient education -- Periodicals; Health counseling -- Periodicals; Health education -- Periodicals; Counseling -- Periodicals; Patient Education -- Periodicals; Éducation des patients -- Périodiques; Counseling -- Périodiques; Éducation sanitaire -- Périodiques; 615.5071
• DOI: 10.1016/j.pec.2020.11.025
• Languages: English
• ISSNs: 0738-3991

Abstract

Highlights: A Patient and Family Advisory Council is a specific way of conducting organisational patient engagement. By participating in the Council, the participants feel a genuine engagement and interest from the health care professionals. . Patient and Family Advisory Council is also a way of increasing the process of recovery by sharing narratives with others in a similar position. The Council is also a way of increasing the process of recovery by sharing narratives with others in a similar position. Abstract: Objective: The objective was to explore patients' and spouses' perception and attitudes towards participating in a patient and family advisory council. Methods: A 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. Results: In 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". Conclusion: Participants 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 value: Experiences 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.