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

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

doi:10.1016/j.pec.2024.108554

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

Patient Educ Couns. 2025 Feb:131:108554. doi: 10.1016/j.pec.2024.108554. Epub 2024 Nov 15.

Authors

Judith J A M van Beek-Peeters¹, Miriam C Faes², Mirela Habibovic³, Jop B L van der Meer⁴, Ruth E Pel-Littel⁵, Martijn W A van Geldorp⁶, Ben J L Van den Branden⁷, Nardo J M van der Meer⁸, Mirella M N Minkman⁹

Affiliations

¹ Tilburg School of Social and Behavioral sciences, Tilburg University, PO Box 90153, 5000 LE Tilburg, the Netherlands; Department of Cardiothoracic Surgery, Amphia Hospital, PO Box 90158, 4800 RK Breda, the Netherlands. Electronic address: [email protected].
² Department of Geriatrics, Amphia Hospital, PO Box 90158, 4800 RK Breda, the Netherlands. Electronic address: [email protected].
³ Tilburg School of Social and Behavioral sciences, department of Medical and Clinical Psychology, Tilburg University, PO Box 90153, 5000 LE Tilburg, the Netherlands. Electronic address: [email protected].
⁴ Department of Cardiothoracic Surgery, Amphia Hospital, PO Box 90158, 4800 RK Breda, the Netherlands; Erasmus Medical Center, PO Box 1738, 3000 DR Rotterdam, the Netherlands. Electronic address: [email protected].
⁵ Vilans, Centre of Expertise for Care and Support, PO Box 8228, 3503 RE Utrecht, the Netherlands; HAN University of Applied Sciences, postbus 6960, 6503 GL Nijmegen, the Netherlands. Electronic address: [email protected].
⁶ Department of Cardiothoracic Surgery, Amphia Hospital, PO Box 90158, 4800 RK Breda, the Netherlands. Electronic address: [email protected].
⁷ Department of Interventional Cardiology, Amphia Hospital, PO Box 90158, 4800 RK Breda, the Netherlands. Electronic address: [email protected].
⁸ TIAS School for Business and Society, Tilburg University, PO Box 90153, 5000 LE Tilburg, the Netherlands; Catharina Hospital, PO Box 90153, 5000 LE Eindhoven, the Netherlands. Electronic address: [email protected].
⁹ Vilans, Centre of Expertise for Care and Support, PO Box 8228, 3503 RE Utrecht, the Netherlands; TIAS School for Business and Society, Tilburg University, PO Box 90153, 5000 LE Tilburg, the Netherlands. Electronic address: [email protected].

PMID: 39577305
DOI: 10.1016/j.pec.2024.108554

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.

Keywords: Aged; Aged, 80 and over; Aortic stenosis; Decision making; Patient participation; Shared.

MeSH terms

Aged
Aged, 80 and over
Aortic Valve Stenosis* / psychology
Caregivers* / psychology
Communication
Decision Making
Decision Making, Shared*
Female
Focus Groups*
Humans
Male
Middle Aged
Patient Participation / psychology
Quality of Life* / psychology
Surveys and Questionnaires