Larkin Mary, Henwood Melanie, Milne Alisoun
Faculty of Wellbeing, Education and Language Studies, The Open University, Milton Keynes, UK.
Health and Social Care Consultancy, Northants, UK.
Health Soc Care Community. 2019 Jan;27(1):55-67. doi: 10.1111/hsc.12586. Epub 2018 May 30.
The review discussed in this paper provides a unique synthesis of evidence and knowledge about carers. The authors adopted a scoping review methodology drawing on a wide range of material from many different sources published between 2000 and 2016. It offers key insights into what we know and how we know it; reinforces and expands evidence about carers' profile; shows knowledge is uneven, e.g. much is known about working carers, young carers and carers of people with dementia but far less is about older carers or caring for someone with multiple needs. A striking feature of much research is a focus on caring as a set of tasks, rather than a dimension of an, often dyadic, relationship. While there is substantive evidence about the negative impact of caring, the review suggests that links between caring and carer outcomes are neither linear nor inevitable and vary in depth and nature. A reliance on cross-sectional studies using standardised measures is a major weakness of existing research: this approach fails to capture the multidimensionality of the caring role, and the lived experience of the carer. Although research relating to formal support suggests that specific interventions for particular groups of carers may be effective, overall the evidence base is weak. There is a tension between cost-effectiveness and what is valued by carers. Developing robust evaluative models that accommodate this tension, and take account of the dyadic context of caring is a critical challenge. A fundamental deficit of carer-related research is its location in one of two, largely separate, paradigmatic frameworks: the "Gatherers and Evaluators" and the "Conceptualisers and Theorisers." The authors suggest that developing an integrated paradigm that draws on the strengths and methods of existing paradigms, has considerable potential to generate new knowledge and new evidence and extend understanding of care and caring.
本文所讨论的综述对有关照料者的证据和知识进行了独特的整合。作者采用了一种范围综述方法，借鉴了2000年至2016年间许多不同来源发表的广泛材料。它提供了关于我们所知道的以及我们如何知道这些的关键见解；强化并扩展了有关照料者概况的证据；表明知识是不均衡的，例如，我们对在职照料者、年轻照料者以及痴呆症患者的照料者了解很多，但对老年照料者或照料有多种需求的人的照料者了解甚少。许多研究的一个显著特点是将照料视为一系列任务，而不是通常二元关系的一个维度。虽然有大量证据表明照料存在负面影响，但该综述表明，照料与照料者结果之间的联系既不是线性的，也不是必然的，其深度和性质各不相同。现有研究的一个主要弱点是依赖使用标准化测量的横断面研究：这种方法无法捕捉照料角色的多维度性以及照料者的实际经历。尽管与正式支持相关的研究表明，针对特定照料者群体的特定干预措施可能有效，但总体而言，证据基础薄弱。成本效益与照料者所看重的东西之间存在矛盾。开发能够适应这种矛盾并考虑到照料二元背景的强大评估模型是一项关键挑战。与照料者相关的研究的一个根本缺陷在于其处于两个基本相互独立的范式框架之一：“收集者和评估者”以及“概念化者和理论家”。作者建议，开发一种综合范式，借鉴现有范式的优势和方法，有很大潜力产生新知识和新证据，并扩展对护理和照料的理解。
