Informal caregivers’ roles and needs regarding shared decision-making in severe aortic stenosis

Le résumé fourni par la source

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. Multiple methods study consisting of a questionnaire at baseline and 3-month follow-up and focus groups. 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. ICs play valuable roles in SDM for severe AS, but feel professionals do not consistently identify them as discussion partners. Professionals should involve ICs in SDM for discussing older patient’s QOL and personal context, which can inform personalized decisions regarding severe AS treatment. • Most informal caregivers prefer a collaborative role in decision-making. • They perceive three roles in decision-making: supporters, stimulators and partners. • Informal caregivers perceive they are not always identified as discussion partners. • Involving informal caregivers in decision making supports personalized decisions. • Supporting the dialogue between patients and informal caregivers is essential.

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