Burton Louisa-Jane, Forster Anne, Johnson Judith, Crocker Thomas F, Tyson Sarah F, Wray Faye, Clarke David J
Academic Unit for Ageing and Stroke Research, University of Leeds, Leeds, UK
Academic Unit for Ageing and Stroke Research, Bradford Institute for Health Research, Bradford Teaching Hospitals NHS Foundation Trust, Bradford, UK.
BMJ Open. 2021 Apr 27;11(4):e045297. doi: 10.1136/bmjopen-2020-045297.
To review and synthesise qualitative literature relating to the views, perceptions and experiences of patients with acquired neurological conditions and their caregivers about the process of receiving information about recovery; as well as the views and experiences of healthcare professionals involved in delivering this information.
Systematic review of qualitative studies.
MEDLINE, Embase, AMED, CINAHL, PsycINFO, Web of Science and the Cochrane library were searched from their inception to July 2019.
Two reviewers extracted data from the included studies and assessed quality using an established tool. Thematic synthesis was used to synthesise the findings of included studies.
Searches yielded 9105 titles, with 145 retained for full-text screening. Twenty-eight studies (30 papers) from eight countries were included. Inductive analysis resulted in 11 descriptive themes, from which 5 analytical themes were generated: the right information at the right time; managing expectations; it's not what you say, it's how you say it; learning how to talk about recovery and manage emotions; the context of uncertainty.
Our findings highlight the inherent challenges in talking about recovery in an emotional context, where breaking bad news is a key feature. Future interventions should focus on preparing staff to meet patients' and families' information needs, as well as ensuring they have the skills to discuss potential recovery and break bad news compassionately and share the uncertain trajectory characteristic of acquired neurological conditions. An agreed team-based approach to talking about recovery is recommended to ensure consistency and improve the experiences of patients and their families.
回顾并综合定性文献，这些文献涉及后天性神经疾病患者及其护理人员对康复信息接收过程的看法、认知和经历；以及参与提供此类信息的医护人员的看法和经历。
对定性研究进行系统综述。
检索了MEDLINE、Embase、AMED、CINAHL、PsycINFO、Web of Science和Cochrane图书馆，检索时间从各数据库建库至2019年7月。
两名综述员从纳入研究中提取数据，并使用既定工具评估质量。采用主题综合法对纳入研究的结果进行综合。
检索得到9105个标题，145篇留作全文筛选。纳入了来自8个国家的28项研究（30篇论文）。归纳分析产生了11个描述性主题，从中生成了5个分析性主题：在正确的时间提供正确的信息；管理期望；重要的不是你说了什么，而是你怎么说；学习如何谈论康复和管理情绪；不确定性背景。
我们的研究结果凸显了在情感背景下谈论康复所固有的挑战，其中告知坏消息是一个关键特征。未来的干预措施应侧重于让工作人员做好准备，以满足患者及其家属的信息需求，同时确保他们具备以同情的方式讨论潜在康复情况、告知坏消息以及分享后天性神经疾病所特有的不确定病程的技能。建议采用一种商定的基于团队的方法来谈论康复，以确保一致性并改善患者及其家属的体验。
