Hoover Elizabeth, Bernstein-Ellis Ellen, Meyerson Debra
Speech-Language and Hearing Sciences, Boston University, United States.
Speech-Language and Hearing Sciences, California State University, East Bay, United States.
J Commun Disord. 2023 Sep-Oct;105:106363. doi: 10.1016/j.jcomdis.2023.106363. Epub 2023 Jul 28.
Aphasia book clubs were developed to support connecting with literature and reading for pleasure within an aphasia-friendly environment. Bibliotherapy is an evidence-based therapeutic approach, in which a book is selected to address the challenges facing the reader. Its aim is to facilitate a deeper understanding of a lived experience in order to promote healing, strategy development, and adjustment. Aphasia book clubs provide an opportunity to discuss books about the challenges associated with aphasia. A recent book, Identity theft: Rediscovering ourselves after stroke recounts the stroke recovery story of Dr. Debra Meyerson and 22 other stroke survivors. Identity Theft focuses on the need to reconstruct positive identities despite remaining disabilities to facilitate rebuilding rewarding lives. The purpose of this study is to understand the impact of reading Identity Theft in an aphasia book club for people with aphasia (PwA).
27 PwA read the book Identity Theft in one of four online aphasia book clubs offered by two universities. Weekly discussions were facilitated by graduate SLP students under the supervision of experienced clinicians. At the end of the 10 week program, semi-structured qualitative interviews were conducted with participants to understand the lived experience. Interviews were analyzed using reflexive thematic analysis.
Analysis of the interview data generated four main themes and 13 subthemes. The main themes included: Mechanism for Reflection, Power of Community, Engaged Learning, and Therapeutic Environment. Interview extracts illustrate the way these themes support increasing self-efficacy and rebuilding a positive identity.
The themes align positively with outcomes associated with the bibliotherapy process. Themes also integrate into a self-management model that promotes self-efficacy through education, support, awareness, problem solving and goal setting. Caveats included determining participant readiness to examine recovery issues and facilitator preparation. Aphasia book clubs surrounding psychosocial texts may help PwA reconstruct a positive post-stroke identity.
失语症读书俱乐部旨在支持在一个对失语症患者友好的环境中与文学作品建立联系并享受阅读乐趣。阅读疗法是一种基于证据的治疗方法，即选择一本书来应对读者面临的挑战。其目的是促进对生活经历的更深入理解，以促进康复、策略制定和调整。失语症读书俱乐部提供了一个讨论与失语症相关挑战的书籍的机会。最近有一本书《身份盗窃：中风后重新发现自我》讲述了黛布拉·迈耶森博士和其他22名中风幸存者的中风康复故事。《身份盗窃》关注的是尽管仍有残疾，但仍需重建积极身份以促进重建有意义生活的必要性。本研究的目的是了解在失语症读书俱乐部中阅读《身份盗窃》对失语症患者的影响。
27名失语症患者在两所大学提供的四个在线失语症读书俱乐部之一中阅读了《身份盗窃》这本书。每周的讨论由研究生言语语言病理专业学生在经验丰富的临床医生监督下进行。在为期10周的项目结束时，对参与者进行了半结构化定性访谈，以了解他们的生活经历。访谈采用反思性主题分析法进行分析。
对访谈数据的分析产生了四个主要主题和13个子主题。主要主题包括：反思机制、社区的力量、参与式学习和治疗环境。访谈摘录说明了这些主题如何支持增强自我效能感和重建积极身份。
这些主题与阅读疗法过程相关的结果呈正相关。这些主题还融入了一个自我管理模型，该模型通过教育、支持、意识、问题解决和目标设定来促进自我效能感。需要注意的是，要确定参与者是否准备好审视康复问题以及主持人的准备情况。围绕心理社会文本的失语症读书俱乐部可能有助于失语症患者重建中风后的积极身份。
