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

IF 2.9 2区医学 Q2 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Patient Education and Counseling Pub Date : 2024-11-15 DOI:10.1016/j.pec.2024.108554

Judith J.A.M. van Beek-Peeters , Miriam C. Faes , Mirela Habibovic , Jop B.L. van der Meer , Ruth E. Pel-Littel , Martijn W.A. van Geldorp , Ben J.L. Van den Branden , Nardo J.M. van der Meer , Mirella M.N. Minkman

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Abstract

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.

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非正规护理人员在重度主动脉瓣狭窄患者共同决策方面的角色和需求。

目的深入了解非正规照顾者（ICs）对 70 岁以上重度主动脉瓣狭窄（AS）患者共同决策（SDM）的经验、偏好和需求，以及感知到的 SDM 水平对 ICs 生活质量（QOL）和痛苦的影响：方法：多方法研究，包括基线问卷调查、3 个月随访和焦点小组：99 名集成电路设计师（67.6 ± 11.7 岁）完成了基线问卷，82 名集成电路设计师完成了后续问卷，10 名集成电路设计师（70.6 ± 12.6 岁）参加了两个焦点小组。综合症患者认为，与专业人员讨论最少的是确定他们为讨论伙伴和解决患者的日常生活问题（26.3%；59.6%）。大多数集成电路（63.9%）倾向于合作决策（DM）角色。感知到的 SDM 水平与基线 QOL 社会关系（p = .038）、后续 QOL 心理健康（p = .048）和环境（p = .024）呈正相关。综合治疗师在 SDM 中扮演了三种角色：DM 的支持者、澄清患者个人背景的激励者和 DM 的合作伙伴：集成治疗师在重度 AS 的 SDM 中发挥着重要作用，但专业人员并未始终将他们视为讨论伙伴：专业人员应让 IC 参与 SDM，讨论老年患者的 QOL 和个人背景，这可以为有关严重 AS 治疗的个性化决策提供信息。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Patient Education and Counseling 医学-公共卫生、环境卫生与职业卫生

CiteScore

5.60

自引率

11.40%

发文量

384

审稿时长

46 days

期刊介绍： Patient Education and Counseling is an interdisciplinary, international journal for patient education and health promotion researchers, managers and clinicians. The journal seeks to explore and elucidate the educational, counseling and communication models in health care. Its aim is to provide a forum for fundamental as well as applied research, and to promote the study of organizational issues involved with the delivery of patient education, counseling, health promotion services and training models in improving communication between providers and patients.