What are the roles, needs, and effects of shared decision-making on quality of life for informal caregivers of older patients with severe aortic stenosis?
Informal caregivers play a valuable role in shared decision-making for severe aortic stenosis, and higher perceived involvement is associated with better caregiver quality of life.
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.
Beek-Peeters et al. (Fri,) studied this question.