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

Malene Missel, Malene Haugaard Hansen, Nadja Buch Petersson, Jacqueline Forman, Ida Elisabeth Højskov, Britt Borregaard

Publikation: Bidrag til tidsskriftTidsskriftartikelForskningpeer review


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.

TidsskriftPatient Education and Counseling
Udgave nummer6
Sider (fra-til)1481-1486
Antal sider6
StatusUdgivet - jun. 2021
Udgivet eksterntJa

Bibliografisk note

Copyright © 2020 Elsevier B.V. All rights reserved.

Citer dette