Hersh Deborah, Armstrong Elizabeth
School of Medical and Health Sciences, Edith Cowan University, Perth, Australia.
Aphasiology. 2020 Jun 1;35(8):1067-1083. doi: 10.1080/02687038.2020.1765304. eCollection 2021.
: 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. : 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. : 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. : 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. : 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.
多年来,中风和失语症的影响一直被视为一个家庭问题,研究强调配偶在康复过程的不同阶段需要信息、实际和情感支持、认可及喘息机会。特别是,尽管家庭参与有助于家庭成员规划并适应新的护理角色,但在出院决策或康复计划方面,协作并不总是存在。
本研究旨在探讨失语症男性患者的妻子在中风急性期如何安排其出院事宜。通过对一个去识别化但真实的案例进行详细分析,为医疗专业人员提供学习和提高认识的机会,该案例反映了以往研究中家庭报告的关键问题:信息不足、与医护人员沟通不畅以及需要维权。
作为早期大型多地点研究的一部分,对妻子进行的一次深度访谈,该研究包括对48名中风后失语症患者家庭成员的访谈;以及她写给医院的两封投诉信和收到的两封回信。本研究采用访谈的叙事分析和信件的系统功能语言学(SFL)分析,以阐明信息、沟通和维权的关键问题。
访谈的叙事分析和信件的SFL分析共同有助于揭示妻子向其丈夫中风后入住的医院写投诉信的动机。信件本身显示了双方在语言上的精心选择,医院对妻子的担忧不予理会并终止了交流。它们还反映出医院对失语症的功能后果及其对家庭的影响存在严重误解。
对于在中风后照顾失语症患者的家庭成员来说,在急性期获得清晰的信息和良好的沟通至关重要。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,并在长期内更有效地支持对中风后生活的调整。