ABSTRACT

Background: The impact of stroke and aphasia has been recognised as a family problem for many years with studies highlighting spouses’ need for information at different times along the recovery journey, for practical and emotional support, recognition, and respite. In particular, the decision-making around discharge from hospital, or planning for rehabilitation, is not always collaborative even though family involvement assists family members to plan and adjust to their new caring role.

Aims: This study aims to explore how the wife of a man with aphasia managed his discharge from hospital in the acute phase post-stroke. It provides an opportunity for health professional learning and sensitisation through the detailed analysis of a de-identified but a real case that happened to reflect key issues reported by families in previous research: lack of information, poor communication with healthcare professionals, and the need for advocacy.

Methods and procedures: The data for this paper are drawn from two sources: a single in-depth interview with the wife collected as part of an earlier large multi-site study that included interviews with 48 family members of people with aphasia after stroke; and two complaint letters she wrote to the hospital and two letters received back. This study uses a narrative analysis of the interview, and a systemic functional linguistics (SFL) analysis of the letters in order to shed light on the key issues of information, communication, and advocacy.

Outcomes and results: The narrative analysis of the interview and the SFL analysis of the letters together help to unpack the reasons why the wife felt motivated to write a complaint letter to the hospital where her husband had been admitted post-stroke. The letters themselves demonstrate careful choices of language for both parties, with the hospital discounting the wife’s concerns and closing down the exchange. They also reflect a profound misunderstanding by the hospital about the functional consequences of aphasia and its impact on the family.

Conclusions: It is important that family members, taking on a caring role for people with aphasia after stroke, are supported with clear information and good communication in acute settings. This may enable them to be engaged in the recovery process as partners with healthcare teams and more effectively support adjustments to post-stroke life in the longer term.

摘要

背景：多年来，中风和失语症的影响一直被认为是一个家庭问题，研究强调配偶在康复过程中的不同时间需要信息，以获得实际和情感支持、认可和喘息。特别是，即使家庭参与有助于家庭成员计划和适应他们新的照顾角色，围绕出院或康复计划的决策并不总是协作的。

目的：本研究旨在探讨失语症男子的妻子如何在中风后急性期管理出院。它通过详细分析一个未识别但真实的案例，为健康专业人士提供了学习和敏感度的机会，该案例恰好反映了家庭在先前研究中报告的关键问题：缺乏信息、与医疗保健专业人员的沟通不畅以及需要倡导。

方法和程序：本文的数据来自两个来源：作为早期大型多站点研究的一部分收集的对妻子的一次深入访谈，该研究包括对中风后失语症患者的 48 名家庭成员的访谈；以及她写给医院的两封投诉信，并收到了两封回信。本研究使用访谈的叙述分析和信件的系统功能语言学 (SFL) 分析，以阐明信息、交流和宣传的关键问题。

结果和结果： 采访的叙述分析和信件的 SFL 分析一起有助于解开妻子丈夫感到有动力向她中风后入院的医院写一封投诉信的原因。这些信件本身表明双方都谨慎选择了语言，医院打消了妻子的担忧并关闭了交流。它们还反映了医院对失语症的功能后果及其对家庭的影响的深刻误解。

结论：重要的是，在急性情况下，家庭成员承担着照顾中风后失语症患者的职责，并获得清晰的信息和良好的沟通支持。这可能使他们能够作为医疗团队的合作伙伴参与康复过程，并更有效地支持中风后生活的长期调整。