Department Ethics, Law and Humanities, Amsterdam Public Health Research Institute, Amsterdam UMC, Location VUmc and Department of Occupational Therapy, Faculty of Health, Amsterdam University of Applied Science, Tafelbergweg 51, 1000CN Amsterdam, the Netherlands.
Department Ethics, Law and Humanities, Amsterdam Public Health Research Institute, Amsterdam UMC, Location VUmc, de Boelelaan 1105, 1081 HV Amsterdam, the Netherlands.
Soc Sci Med. 2024 Sep;356:117169. doi: 10.1016/j.socscimed.2024.117169. Epub 2024 Jul 31.
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.
本研究试图理解协作护理网络中的知识力量，通过交叉性和认识论（不）公正的结合，为设计成功的护理网络协作提供见解。成为一名后天脑损伤（ABI）患者的非正式照顾者会极大地扰乱日常生活。具有移民背景的专业人员和照顾者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。照顾者的经历受到多样性方面的影响，这些方面受到护理网络中权力结构和社会（不）公正进程的影响。在这项研究中，交叉性被用来深入了解照顾者经历的不同活跃层面，并关注群体内的差异。交叉性与认识论（不）公正的理论概念相结合，揭示了协作护理网络中导致以下理解的潜在动态：具有移民背景的照顾者通常不被视为“现实的知情者”。这项在 2019 年至 2022 年期间在荷兰进行的定性研究结合了三次非正式小组对话（N=32）、半结构化访谈（N=21）和与照顾后天脑损伤患者的照顾者进行的三次对话会议（N=7）。一位批判性朋友和一个由照顾者、专业人员和护理接受者（N=8）组成的实践共同体为分析做出了贡献。确定了三个相互关联的主题，作为照顾者体验的不同层面：（a）我需要继续前进，关注照顾者的个人经历以及这些经历与照顾者社会定位的关系；（b）共同照顾的斗争，表明家庭成员对照顾者的期望如何增加了照顾者的负担；（c）信任是一种平衡行为，集中于专业人员的支持如何塑造照顾者的经历，信任专业人员的支持对照顾者来说具有挑战性，以及这种信任如何受到组织和政策层面的背景因素的影响。总的来说，需要在护理组织中制定对多样性有回应的政策。具有移民背景的照顾者需要感到自己的声音被听到，以便他们能够有意义地调整护理以满足接受者的需求。
