TY - JOUR
T1 - Transforming the experience of illness into action - Patient and spouses experiences of involvement in a patient and family advisory council
AU - Missel, Malene
AU - Hansen, Malene Haugaard
AU - Petersson, Nadja Buch
AU - Forman, Jacqueline
AU - Højskov, Ida Elisabeth
AU - Borregaard, Britt
PY - 2021/6
Y1 - 2021/6
N2 - 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.
AB - 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.
U2 - 10.1016/j.pec.2020.11.025
DO - 10.1016/j.pec.2020.11.025
M3 - Journal article
C2 - 33257200
VL - 104
SP - 1481
EP - 1486
JO - Patient Education and Counseling
JF - Patient Education and Counseling
SN - 0738-3991
IS - 6
ER -