Schmidt Alexandra, Weckbecker Klaus, In der Schmitten Jürgen, Götze Kornelia, Mortsiefer Achim
Chair of General Practice II and Patient-Centredness in Primary Care, Institute of General Practice and Primary Care (iamag), Faculty of Health, Witten/Herdecke University, Witten, Germany.
Chair of General Practice I and Interprofessional Care, Institute of General Practice and Primary Care (iamag), Faculty of Health, Witten/Herdecke University, Witten, Germany.
Health Expect. 2025 Aug;28(4):e70392. doi: 10.1111/hex.70392.
BACKGROUND: Advance care planning (ACP) empowers individuals to make informed decisions about future medical care. While research has focused on patients with advanced chronic or terminal conditions, there remains a notable gap in understanding the perspectives and experiences of ambulatory individuals who proactively engage in ACP. OBJECTIVE: To explore ambulatory patients' perspectives on and experiences with facilitated ACP provided by trained professionals in German general practices, focusing on the expectations, motivations and outcomes of the ACP process. DESIGN: Longitudinal qualitative design using semi-structured telephone interviews, conducted before, immediately after and 12 months after ACP facilitation. Interviews were analysed using thematic qualitative text analysis by Kuckartz. SETTING AND PARTICIPANTS: Interviews were conducted with eight German patients (six females and two males; mean age: 63.6 years; frailty score from 1 to 5) in two general practice settings. RESULTS: Participants valued comprehensive advance directives (ADs) and structured ACP conversations in general practice. Key motivators for seeking ACP facilitation were maintaining autonomy and reducing family burden. Trustworthy discussions with professional facilitators, structured guidance and clear communication, particularly involving healthcare proxies, were essential for a satisfying ACP process. Despite expressing a prior interest in discussing care preferences, some participants had not yet initiated these conversations. CONCLUSIONS: ACP facilitation enables patients to articulate their values and healthcare preferences, supporting decision-making and reducing uncertainty. Integrating structured ACP discussions into routine primary care could enhance patient autonomy and preparedness. Future research should explore strategies to optimise ACP implementation and assess its long-term impact on patient outcomes. PATIENT OR PUBLIC CONTRIBUTION: Stakeholder and patient involvement is a crucial aspect of empowering research subjects and improving study feasibility and relevance. In this study, stakeholders such as experts in the field of ACP (one female GP and two male GPs), other GPs and patients were involved as an expert panel in a stepwise participatory approach. The process involved training in ACP facilitation for AS before conducting the study, expert panel meetings to identify research gaps and prioritise research topics, focus group discussions to conceptualise study design and data collection procedures, as well as the development of interview guidelines and data analysis. A patient advisory board (seven females and four males; age: 36-78 years with chronic illnesses) associated with the Institute of General Practice and Primary Care (iamag) was also involved in creating the interview guidelines (guidelines can be found in Appendix 2-4). TRIAL REGISTRATION: German Clinical Trial Register (DRKS) (ID: DRKS00027368; date of registration: April 2023; URL: https://www.drks.de/DRKS00027368).
背景:预先护理计划(ACP)使个人能够对未来的医疗护理做出明智的决定。虽然研究主要集中在患有晚期慢性疾病或绝症的患者身上,但在了解积极参与ACP的非卧床患者的观点和经历方面仍存在显著差距。 目的:探讨德国全科医疗中,非卧床患者对由专业培训人员提供的辅助性ACP的看法和体验,重点关注ACP过程中的期望、动机和结果。 设计:采用纵向定性设计,通过半结构化电话访谈,在辅助性ACP实施前、实施后立即以及实施后12个月进行。访谈采用库卡茨的主题定性文本分析方法进行分析。 设置和参与者:在两个全科医疗环境中,对8名德国患者(6名女性和2名男性;平均年龄:63.6岁;衰弱评分从1到5)进行了访谈。 结果:参与者重视全面的预先指示(ADs)和全科医疗中的结构化ACP对话。寻求辅助性ACP的主要动机是保持自主权和减轻家庭负担。与专业辅助人员进行值得信赖的讨论、结构化指导和清晰沟通,特别是涉及医疗代理人,对于令人满意的ACP过程至关重要。尽管一些参与者此前表示有兴趣讨论护理偏好,但他们尚未开始这些对话。 结论:辅助性ACP使患者能够阐明自己的价值观和医疗偏好,支持决策并减少不确定性。将结构化的ACP讨论纳入常规初级保健可以增强患者的自主权和准备程度。未来的研究应探索优化ACP实施的策略,并评估其对患者结局的长期影响。 患者或公众贡献:利益相关者和患者的参与是赋予研究对象权力以及提高研究可行性和相关性的关键方面。在本研究中,ACP领域的专家(一名女全科医生和两名男全科医生)、其他全科医生和患者等利益相关者作为专家小组,采用逐步参与的方法参与其中。该过程包括在研究开展前对研究助理进行ACP辅助培训、专家小组会议以确定研究差距并对研究主题进行优先级排序、焦点小组讨论以构思研究设计和数据收集程序,以及制定访谈指南和数据分析。与全科医疗和初级保健研究所(iamag)相关的患者咨询委员会(7名女性和4名男性;年龄:36 - 78岁,患有慢性病)也参与了访谈指南的制定(指南可在附录2 - 4中找到)。 试验注册:德国临床试验注册中心(DRKS)(编号:DRKS00027368;注册日期:2023年4月;网址:https://www.drks.de/DRKS00027368)
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