Faculty of Health and Medicine, Lancaster University, Bailrigg, Lancaster, LA1 4YG, UK.
Syst Rev. 2020 Nov 26;9(1):270. doi: 10.1186/s13643-020-01525-0.
The knowledge about the experience of informal caregivers who provide care to people with moderate to advanced dementia in a domestic home setting is limited. A consequence of long hours of caregiving in addition to dealing with normal challenges of daily living is their experience of a poor quality of life. Some of their experiences may be described in terms of a feeling of powerlessness to make changes during care provision. This feeling may also suggest an experience of moral distress. The aim of this systematic review is to synthesise qualitative evidence relating to these experiences.
This review adopts a narrative synthesis approach. A search will be conducted for studies written in the English language in the bibliographic databases MEDLINE Complete, CINAHL, EMBASE, PsycINFO, Web of Science and Academic Search Complete covering periods from 1984 to present. Included studies will be qualitative or mixed-methods designs. The search terms will be related to dementia and caregivers, and the process will be focused on dementia at the moderate to the advanced stages within the domestic home setting. Reference lists of included papers will also be searched for additional relevant citations. Search terms and strategies will be checked by two independent reviewers. The identification of abstracts and full texts of studies will be done by the author, while the quality and the risk of bias will also be checked by the two independent reviewers.
Psychological distress is cited as an experience reported within informal caregiving. For the caregiver, it is associated with a negative impact on general health. To date, no synthesis exists on the specific experience of informal caregiving for people with moderate to advanced dementia within the domestic home setting. This review considers that variation of accounts contributes to how the informal caregivers' general experience is explored in future research. This may enable gaps in current knowledge to be highlighted within the wider context of caregiving in the domestic home setting.
This review is registered with PROSPERO ( CRD42020183649 ).
在家庭环境中为中度至重度痴呆症患者提供护理的非专业护理人员的经验知识有限。除了应对日常生活的正常挑战外，长时间的护理还会导致他们的生活质量下降。他们的一些经历可能会被描述为在提供护理时感到无力做出改变，这种感觉也可能暗示着道德困境。本系统评价的目的是综合与这些经历相关的定性证据。
本综述采用叙述性综合方法。将在 MEDLINE Complete、CINAHL、EMBASE、PsycINFO、Web of Science 和 Academic Search Complete 等英文文献数据库中搜索研究，涵盖 1984 年至今的研究。纳入的研究将采用定性或混合方法设计。搜索词将与痴呆症和护理人员有关，研究将集中在家庭环境中处于中度至重度阶段的痴呆症。还将搜索纳入论文的参考文献列表，以获取其他相关引文。将由两名独立审查员检查搜索词和策略。将由作者识别摘要和研究全文，而两名独立审查员还将检查质量和偏倚风险。
心理困扰被认为是非专业护理人员报告的一种经历。对于护理人员来说，这与一般健康状况恶化有关。迄今为止，尚无关于家庭环境中为中度至重度痴呆症患者提供非专业护理的具体经验的综合报告。本综述认为，不同的说法有助于在未来的研究中探索非专业护理人员的一般体验。这可能会突出当前知识中的空白，从而在家庭环境中的护理更广泛的背景下突出这些空白。
本综述在 PROSPERO（CRD42020183649）上进行了注册。
