Abstract

Acquired brain injury (ABI) represents a great burden for not only the person with ABI but also their partner. Grief among partners of adults with ABI is a broadly recognized phenomenon. However, few studies have examined partners’ experience of grief, and little is known about grief as a reaction to ambiguous loss. This article presents a phenomenological study that aimed to explore the experience of grief among caregiving partners. Four semi-structured interviews were conducted and analyzed by a phenomenological descriptive analysis. Through the analysis, nine themes were identified: the process of becoming a caregiver, grief emotions, loss, emotionally closer relations to the partner relations, dyadic coping, unmet needs for support, future opportunities, changes over the life course, and understanding of grief. The themes are interrelated and highlight various aspects of the phenomenon of grief as experienced by caregivers. Results reveal that grief is often a reaction to ambiguous loss and is experienced as disenfranchised. Furthermore, the study indicates that caregivers’ perception of grief and the situation in general were essential to the experience of grief.

摘要

获得性脑损伤（ABI）不仅给患有ABI的人而且对他们的伴侣都构成了沉重的负担。患有ABI的成年人的伴侣之间的悲伤是一种广泛认可的现象。但是，很少有研究检查伴侣的悲伤经历，而对悲伤作为对模棱两可的损失的反应的了解却很少。本文提供了一种现象学研究，旨在探讨护理伴侣之间的悲伤经历。进行了四次半结构化访谈，并通过现象学描述性分析进行了分析。通过分析，确定了九个主题：成为照料者的过程，悲伤的情绪，失落，与伴侣关系的情感上更紧密的关系，二元对策，未得到满足的支持需求，未来的机会，人生历程的变化以及对悲伤的理解。这些主题是相互关联的，并突出了护理人员所经历的悲伤现象的各个方面。结果表明，悲伤通常是对模棱两可的损失的反应，被剥夺了权利。此外，研究表明，护理人员对悲伤的理解和整体情况对于经历悲伤至关重要。