Rabben Jannicke, Rohde Gudrun Elin, Fossum Mariann, Vivat Bella
Department of Health and Nursing Science, Faculty of Health and Sport Sciences, University of Agder, Kristiansand, Norway.
Department of Clinical Research, Sorlandet Hospital, Kristiansand, Norway.
J Adv Nurs. 2025 Aug;81(8):4976-4988. doi: 10.1111/jan.16705. Epub 2025 Jan 30.
To explore the experiences and perceptions of people with advanced cancer and their family caregivers of shared decision-making, including how they and nurses are involved.
Exploratory interview study.
Semistructured, individual interviews conducted in 2023 were analysed using reflexive thematic analysis.
Twenty-four participants (15 people with cancer and 9 caregivers) participated in this study. The analysis generated five themes; (1) Decisions are ultimately about living or dying, (2) Desires and expectations for involvement in decision-making, (3) Uncertainty about potential and capacity for shared decision-making, (4) Good quality information and communication are key for involvement and (5) Nurses' contributions are unclear.
Overall, our participants were unsure about how decision-making about the complex and existential decisions in palliative cancer care was shared, or how it included them, or nurses.
People receiving care could benefit from more clarity on what shared decision-making is, how they can be involved and how nurses can facilitate and support shared decision-making.
Part of the nursing role is to support and involve people with cancer and family caregivers in decisions about treatment and care. Our findings suggest that people receiving care may be unclear about the concept of shared decision-making, and so also about how nurses potentially or actually support decision-making. Our study further clarifies the challenges and possibilities for involving all stakeholders in shared decision-making. This additional insight may help in future development and implementation of shared decision-making.
COREQ. WHAT DOES THIS PAPER CONTRIBUTE TO THE WIDER GLOBAL CLINICAL COMMUNITY?: Adds to knowledge and understanding of the complexity of shared decision-making in palliative cancer care and how nurses can contribute to this and advancing a person-centred approach.
A patient and public involvement group participated in all phases of planning and conducting this study.
探讨晚期癌症患者及其家庭照护者对共同决策的体验和看法，包括他们以及护士如何参与其中。
探索性访谈研究。
采用反思性主题分析法对2023年进行的半结构化个人访谈进行分析。
24名参与者（15名癌症患者和9名照护者）参与了本研究。分析产生了五个主题：（1）决策最终关乎生存或死亡，（2）参与决策的愿望和期望，（3）共同决策的潜力和能力的不确定性，（4）高质量的信息和沟通是参与的关键，（5）护士的贡献不明确。
总体而言，我们的参与者不确定在姑息性癌症护理中，关于复杂和生死攸关的决策是如何共享的，或者他们以及护士是如何被纳入其中的。
接受护理的人可能会从更清楚地了解共同决策是什么、他们如何参与以及护士如何促进和支持共同决策中受益。
护理工作的一部分是支持癌症患者及其家庭照护者参与有关治疗和护理的决策。我们的研究结果表明，接受护理的人可能不清楚共同决策的概念，因此也不清楚护士在潜在或实际支持决策方面的情况。我们的研究进一步阐明了让所有利益相关者参与共同决策的挑战和可能性。这一额外的见解可能有助于未来共同决策的发展和实施。
COREQ。本文对更广泛的全球临床社区有何贡献？：增加了对姑息性癌症护理中共同决策复杂性的认识和理解以及护士如何为此做出贡献并推进以患者为中心的方法。
一个患者和公众参与小组参与了本研究规划和实施的所有阶段。
