J. Zhang, Yuling Lei, Zhenzhen Huang, Chuchu Zhang, Weiling Jiang, Na Zhang, Weijing Sui, Yiyu Zhuang
BACKGROUND: Shared decision-making is widely promoted in ICUs but remains challenging. As sedation strategies evolve, more conscious patients can participate, yet studies often overlook their experiences, focussing on family and clinicians. AIM: To explore the expectations of conscious ICU patients regarding their participation in shared decision-making and identify the factors influencing their level of engagement. STUDY DESIGN: A qualitative descriptive study was used. The data were collected using semi-structured interviews conducted between July and August 2024 at a university hospital in Hangzhou, China. Data were subjected to thematic analysis. Twelve conscious adult ICU patients (GCS = 15) with full decision-making capacity were recruited. FINDINGS: We identified 10 subthemes that were classified into three themes: (a) transfer of decision-making power: family members are better spokespersons, physician's authority, limited space for autonomy; (b) the complexity of patients' participation in decision-making: family-centred decision-making preferences, silent compromise and altruism, fluidity in decision-making; and (c) factors influencing the transfer of decision-making power: low decision-making efficacy, negative emotions, the financial costs of each decision and information vacuum. CONCLUSIONS: Conscious ICU patients prioritise respect, clear communication and sufficient information over asserting their rights. They rely on family support and find ICU decision-making stressful and fluid. Decisions should consider the family's well-being, as members may conceal their views for harmony. Culturally adapted models are needed to help patients express their needs. RELEVANCE TO CLINICAL PRACTICE: Understanding the decision-making preferences of conscious ICU patients is crucial for improving shared decision-making. Providing clear communication, emotional support and culturally sensitive approaches can help patients actively engage in the decision-making process.