Academic Unit of Primary Medical Care, The University of Sheffield Faculty of Medicine Dentistry and Health, Sheffield, UK
Academic Unit of Primary Medical Care, The University of Sheffield Faculty of Medicine Dentistry and Health, Sheffield, UK.
BMJ Open. 2021 Dec 20;11(12):e052608. doi: 10.1136/bmjopen-2021-052608.
There are 50 million dementia sufferers worldwide. Decisions about healthcare often need to be made when the person with dementia lacks capacity to do so.Understanding the support needs of carers acting as proxy healthcare decision-makers will be vital in improving the decision-making process for people with dementia and addressing the holistic needs of carers.
The objective of this study was to review the existing literature on the support needs of carers acting as proxy healthcare decision-makers for people with dementia.
A qualitative systematic review protocol was published on PROSPERO. The Critical Appraisal Skills Programme checklist was used to appraise study quality. A meta-ethnographic synthesis was performed to develop third-order constructs.
A search was conducted using three online databases (MEDLINE, CINAHL and PsycINFO).
Fifteen studies met the inclusion criteria: primary qualitative research involving carers of people with dementia who had been involved in making proxy healthcare decisions.
Two independent researchers conducted validity assessments for each paper selected for inclusion, and discrepancies were resolved by discussions with a third reviewer. Nvivo software was used and conceptual findings from study papers lead to interpretations of findings by the team.
From the 15 papers included in the study, three main domains arose from the meta-ethnography; informational, practical and emotional. Informational support needs included information about dementia itself and the anticipated disease trajectory. Practical needs included continuity of care, person-centred care and the use of legal frameworks.Emotional support included recognising the guilt that healthcare decisions can provoke and the importance of providing guidance in an empathic manner.
This meta-ethnography highlights opportunities for healthcare professionals and policymakers to improve experiences of carers making proxy healthcare decisions for people with dementia.
CRD42020124485.
全球有 5000 万痴呆症患者。当痴呆症患者丧失做出医疗保健决策的能力时，往往需要他人做出决策。了解作为代理医疗保健决策者的护理人员的支持需求，对于改善痴呆症患者的决策过程和满足护理人员的整体需求至关重要。
本研究旨在综述关于作为痴呆症患者代理医疗保健决策者的护理人员支持需求的现有文献。
在 PROSPERO 上发布了一份定性系统评价方案。使用批判性评估技能计划清单来评估研究质量。进行了元民族志综合分析，以开发第三级结构。
使用三个在线数据库（MEDLINE、CINAHL 和 PsycINFO）进行了搜索。
纳入标准为涉及参与代理医疗保健决策的痴呆症患者的护理人员的初级定性研究。
两名独立研究人员对每一篇入选论文进行有效性评估，如有分歧，则由第三名评审员进行讨论解决。使用 Nvivo 软件，研究论文的概念性发现导致团队对研究结果进行解释。
从纳入的 15 篇论文中，元民族志产生了三个主要领域；信息、实践和情感。信息支持需求包括有关痴呆症本身和预期疾病轨迹的信息。实践需求包括连续性护理、以患者为中心的护理以及法律框架的使用。情感支持包括认识到医疗保健决策可能引发的内疚感，以及以共情方式提供指导的重要性。
本次元民族志研究强调了医疗保健专业人员和政策制定者有机会改善护理人员为痴呆症患者做出代理医疗保健决策的体验。
PROSPERO 注册号：CRD42020124485。
