Abstract:
This study tries to understand the power of knowledge within collaborative care networks to provide insights for designing successful collaboration within care networks by combining intersectionality and epistemic (in)justice. Becoming an informal carer for someone with an acquired brain injury (ABI) causes a dramatic disruption of daily life. Collaboration between professionals and carers with a migration background may result in unjust and unfair situations within care networks. Carer experiences are shaped by aspects of diversity which are subject to power structures and processes of social (in)justice in care networks. In this study, intersectionality was used to both generate complex in-depth insights into the different active layers of carer experiences and focus on within-group differences. Intersectionality was combined with the theoretical concept of epistemic (in)justice to unravel underlying dynamics in collaborative care networks contributing to the understanding that carers with a migration background are often not seen as \'knowers of reality.\' This qualitative study conducted in the Netherlands between 2019 and 2022 incorporated three informal group conversations (N = 32), semi-structured interviews (N = 21), and three dialogue sessions (N = 7) with carers caring for someone with an ABI. A critical friend and a community of practice, with carers, professionals, and care recipients (N = 8), contributed to the analysis. Three interrelated themes were identified as constituting different layers of the carer experience: (a) I need to keep going, focusing on carers\' personal experiences and how experiences were related to carers social positioning; (b) the struggle of caring together, showing how expectations of family members towards carers added to carer burden; and (c) trust is a balancing act, centering on how support from professionals shaped carers\' experiences, in which trusting professionals\' support proved challenging for carers, and how this trust was influenced by contextual factors at organizational and policy levels. Overall, the need for diversity-responsive policies within care organizations is apparent. Carers with a migration background need to feel heard so they can meaningfully tailor care to meet recipients\' needs.
摘要:
这项研究试图了解协作护理网络中知识的力量,通过结合交叉性和认知(正义)来为设计护理网络中的成功协作提供见解。成为患有获得性脑损伤(ABI)的人的非正式照顾者会对日常生活造成严重破坏。具有迁移背景的专业人员和护理人员之间的合作可能会导致护理网络中的不公正和不公平情况。护理者的经验是由多样性的各个方面形成的,这些方面受护理网络中的权力结构和社会(正义)过程的影响。在这项研究中,交叉性被用来对照顾者经验的不同活动层产生复杂的深入见解,并专注于组内差异。交叉性与认知(正义)的理论概念相结合,以解开协作护理网络中的潜在动力,从而理解了具有迁移背景的护理人员通常不被视为现实的知识。这项在2019年至2022年期间在荷兰进行的定性研究纳入了三次非正式小组对话(N=32),半结构化访谈(N=21),和三个对话会议(N=7),照顾者照顾有ABI的人。一个关键的朋友和实践社区,和照顾者在一起,专业人士,和护理接受者(N=8),为分析做出了贡献。三个相互关联的主题被确定为构成照顾者经验的不同层次:(a)我需要继续前进,专注于照顾者的个人经历以及经历与照顾者的社会定位如何相关;(b)共同照顾的斗争,显示家庭成员对照顾者的期望如何增加照顾者的负担;和(C)信任是一种平衡行为,围绕专业人员的支持如何塑造护理人员的经验,在这种情况下,信任专业人员的支持对护理人员来说是具有挑战性的,以及这种信任如何受到组织和政策层面的环境因素的影响。总的来说,护理组织内部对多样性响应政策的需求是显而易见的。有迁移背景的照顾者需要被倾听,这样他们才能有意义地定制照顾,以满足接受者的需求。