TY - JOUR
T1 - Informal caregivers’ roles and needs regarding shared decision-making in severe aortic stenosis
AU - van Beek-Peeters, Judith J.A.M.
AU - Faes, Miriam C.
AU - Habibovic, Mirela
AU - van der Meer, Jop B.L.
AU - Pel-Littel, Ruth E.
AU - van Geldorp, Martijn W.A.
AU - Van den Branden, Ben J.L.
AU - van der Meer, Nardo J.M.
AU - Minkman, Mirella M.N.
N1 - Publisher Copyright: © 2024 The Authors
PY - 2025/2
Y1 - 2025/2
N2 - Objective: To provide insight into experiences, preferences and needs of informal caregivers (ICs) regarding shared decision-making (SDM) in severe aortic stenosis (AS) of patients ≥ 70 years, and the effect of the level of perceived SDM on ICs’ quality of life (QOL) and distress. Methods: Multiple methods study consisting of a questionnaire at baseline and 3-month follow-up and focus groups. Results: Ninety-nine ICs (67.6 ± 11.7 years) completed the baseline questionnaire, eighty-two ICs the follow-up questionnaire, ten ICs (70.6 ± 12.6 years) participated in two focus groups. ICs perceived that identifying them as discussion partners and addressing patients’ daily lives were least discussed with professionals (26.3 %; 59.6 %). Most ICs (63.9 %) preferred a collaborative decision-making (DM) role. The level of perceived SDM was positively associated with baseline QOL social relations (p =. 038), and follow-up QOL psychological health (p =. 048) and environment (p =. 024). ICs experienced three roles in SDM: supporters in DM, stimulators in clarifying patient's personal context, and DM partners. Conclusion: ICs play valuable roles in SDM for severe AS, but feel professionals do not consistently identify them as discussion partners. Practice implications: Professionals should involve ICs in SDM for discussing older patient's QOL and personal context, which can inform personalized decisions regarding severe AS treatment.
AB - Objective: To provide insight into experiences, preferences and needs of informal caregivers (ICs) regarding shared decision-making (SDM) in severe aortic stenosis (AS) of patients ≥ 70 years, and the effect of the level of perceived SDM on ICs’ quality of life (QOL) and distress. Methods: Multiple methods study consisting of a questionnaire at baseline and 3-month follow-up and focus groups. Results: Ninety-nine ICs (67.6 ± 11.7 years) completed the baseline questionnaire, eighty-two ICs the follow-up questionnaire, ten ICs (70.6 ± 12.6 years) participated in two focus groups. ICs perceived that identifying them as discussion partners and addressing patients’ daily lives were least discussed with professionals (26.3 %; 59.6 %). Most ICs (63.9 %) preferred a collaborative decision-making (DM) role. The level of perceived SDM was positively associated with baseline QOL social relations (p =. 038), and follow-up QOL psychological health (p =. 048) and environment (p =. 024). ICs experienced three roles in SDM: supporters in DM, stimulators in clarifying patient's personal context, and DM partners. Conclusion: ICs play valuable roles in SDM for severe AS, but feel professionals do not consistently identify them as discussion partners. Practice implications: Professionals should involve ICs in SDM for discussing older patient's QOL and personal context, which can inform personalized decisions regarding severe AS treatment.
UR - http://www.scopus.com/inward/record.url?scp=85209636638&partnerID=8YFLogxK
U2 - 10.1016/j.pec.2024.108554
DO - 10.1016/j.pec.2024.108554
M3 - Article
C2 - 39577305
AN - SCOPUS:85209636638
SN - 0738-3991
VL - 131
JO - Patient Education and Counseling
JF - Patient Education and Counseling
M1 - 108554
ER -