ABSTRACT BOOK CLUB EXPERIENCES, ENGAGEMENT, AND READING COMPENSATORY STRATEGY USE FOR PEOPLE WITH APHASIA by Samantha Kate Julian Introduction: People with chronic aphasia often exhibit a decrease in social engagement and reading ability which negatively influences quality of life. Book clubs can provide a supportive environment which facilitates both social and reading engagement (Bernstein- Ellis & Elman, 2006). However, limited empirical data exist to support the use of book clubs for individuals with chronic aphasia. Purpose: The purpose of this study was to describe the perceptions and experiences of people with aphasia participating for the first time in a book club. Methods: Ten people with chronic aphasia of various severities participated in this qualitative phenomenological study. Results: Three main themes transpired from the data analysis: 1) perceived changes in attitudes post-book club, 2) differences in use of reading supports and strategies across participants, and 3) perceived social benefits of the book club. Conclusion: One method to increase reading engagement and social interaction for individuals with aphasia is through book clubs. The results from the present study reiterate the need to provide services that extend beyond the standard discussions of managing aphasia and identify more appropriate ways to fill roles as participating adults in the community. BOOK CLUB EXPERIENCES, ENGAGEMENT, AND READING COMPENSATORY STRATEGY USE FOR PEOPLE WITH APHASIA A Thesis Submitted to the Faculty of Miami University in partial fulfillment of the requirements for the degree of Master of Arts by Samantha Kate Julian Miami University Oxford, Ohio 2018 Advisor: Kelly Knollman-Porter, Ph.D. CCC-SLP Reader: Renee Gottliebson, Ph.D., CCC-SLP Reader: Laura Kelly, Ph.D., CCC-A ©2018 Samantha Kate Julian This Thesis titled BOOK CLUB EXPERIENCES, ENGAGEMENT, AND READING COMPENSATORY STRATEGY USE FOR PEOPLE WITH APHASIA by Samantha Kate Julian has been approved for publication by The College of Arts and Science and Department of Speech Pathology and Audiology ____________________________________________________ Kelly Knollman-Porter ______________________________________________________ Renee Gottliebson _______________________________________________________ Laura Kelly Table of Contents Introduction………………………………………………………………………………1 Current Reading Strategies and Supports to Facilitate Comprehension………...…...……1 Book Clubs for PWA………………………………...……………………………………4 Present Study…………………………………………………………………...…………5 Methods……………………………………………………………………...……………6 Participants………………………………………………………………………………...6 Materials……………………….………………………………………………………….7 Procedures…………………………………………………………………………………7 Study Design.…….……………………………………….………………….…………..11 Data Analysis…………………………………………………………………………….12 Results……………………………………………………….…….………………….…13 Pre-Aphasia Reading History…………………….………………….….………….……13 Attitudes About Reading: Pre-Book Club………………….………..…………………. 13 Attitudes About Book Club Participation: Pre-Book Club………………………………15 Differences in Use of Reading Methods, Strategies, and Supports………………. …….16 Social Engagement and Emotional Support…………………………………………..... 19 Attitudes About Reading: Post-Book Club………………………………………………21 Attitudes About Book Club: Post-Book Club…………………………………...……….22 Discussion………….……………………….………………………………………...…22 Changes in Attitudes About Reading and Book Clubs…………………………………. 23 Reading Supports and Strategies………………………………………………………...24 Social Engagement and Emotional Support………………………………………...…...25 Limitations/Future Directions……………………………………………………………27 Conclusion……………………………………………………………………………… 28 References………………………………………………………….…………………… 30 Appendix A………………………………………………………………………………39 Appendix B………………………………………………………………………………40 iii List of Tables Table 1. Participants’ Demographic and Diagnostic Results ……..….……..……....….…8 Table 2. Supplemental Materials…………………………………………….……………9 Table 3. Self-Reported Pre- and Post-Aphasia Reading Frequencies………….………...14 Table 4. Reading Methods, Supports, and Strategies Utilized………………………......20 iv Dedication This Master’s thesis is dedicated to my past, present, and future clients and families affected by aphasia. I sincerely hope this work will be a step (or better yet, a giant leap) towards improving the quality of care, and in turn, quality of life for these individuals. v Acknowledgements I would like to recognize and thank the participants and family members involved in this study for sharing a piece of their lives with us and allowing us to share this knowledge with others. This study could not have been done without my fellow graduate assistants who helped facilitate data collection and analysis for hours on end. Lastly, I want to thank my thesis advisor, Dr. Knollman-Porter, for all her guidance and patience over the last two years. Thank you for always being open to my ideas and allowing me to make this study my own. vi Introduction Reading deficits associated with aphasia can vary in degree and severity. Some people with aphasia (PWA) may experience difficulty decoding or comprehending single written words, phrases or sentences (e.g., signs, notes, instructions), while others may struggle when reading paragraphs or other extended texts (e.g., newspapers, books) (Webster, Morris, Connor, Horner, McCormac, & Potts 2013). Given the nature of the healthcare field’s emphasis on mobility and verbal expression following a stroke, restorative efforts addressing the reading difficulties associated with aphasia have been an area of secondary clinical focus (Lynch, Damico, Abendroth, & Nelson, 2013). Therefore, lingering reading challenges can chronically affect one’s ability to comprehend written text for both functional and pleasure activities and, in turn, decreases participation and quality of life. Quality of life is associated with the degree to which a person with aphasia participates in meaningful endeavors (Cruice, Hill, Worrall, & Hickson, 2010; Dalemans, de Witte, Wades, van den Heuval, 2010). Adequate and efficient reading skills are often required for many social and occupational activities (Behrns, 2009; Knollman-Porter, Wallace, Hux, Brown, Long, 2015; Parr, 1996). In addition, commonly valued pursuits that require the comprehension of written text include reading novels independently, reading books to a child, and reading magazines, religious materials, social media, emails, webpages or newspapers for information or pleasure (Kjellen, Laakso, & Henriksson, 2017; Knollman-Porter et al., 2015; Parr, 1996). Following stroke, comprehending written materials previously read with ease can become effortful and time consuming (Kjellen et al., 2017; Knollman-Porter et al, 2015). Furthermore, PWA perceive that reading is an expected activity of adults in modern society (Kjellen et al., 2017). Due to a reduced ability to read compared to pre-stroke performance and unmet personal expectations as an adult, PWA experience feelings of loss and frustration (Kjellen et al., 2017). Despite chronic difficulties and feelings of disappointment with reading, PWA desire to return to leisure and/or practical activities that require comprehension of longer length written text (Kjellen et al., 2017; Knollman-Porter et al., 2015; Worrall et al., 2011), such as novels or books. Current Reading Strategies and Supports to Facilitate Comprehension Restorative efforts have not been successful in rehabilitating reading skills to levels of performance prior to aphasia diagnosis (Beeson, Rising, Kim, & Rapcasak, 2010; Caute et al., 2016). Consequently, practitioners are exploring the degree to which reading supports and 1 strategies facilitate comprehension of written materials previously enjoyed by PWA (Knollman- Porter et al. 2015; Lynch et al., 2013). Material modifications. One method found to increase reading comprehension is through the modification of text formatting. More specifically, “aphasia-friendly” formatted materials contain ample white space, large standard fonts, simplified vocabulary and syntax, and/or picture support (Brennan et al., 2005; Egan et al., 2004; Rose et al., 2003). Simplified vocabulary and syntax includes sentences with more high frequency or personally relevant words, a basic subject/verb/object syntactical order, and fewer overall words (Brennan et al., 2005; DeDe, 2012; Rose et al., 2003; Rose et al., 2011). While most PWA prefer “aphasia-friendly” materials because of the simple, clear, easy-to-read and understand format, some dislike the modifications, as they reportedly contain reduced amounts of information, and appear too simple or childish (Rose et al., 2011). Furthermore, previous literature states that PWA desire independence and control (Worrall et al., 2011). While “aphasia-friendly” modifications allow many PWA to read and access text more independently, it simultaneously creates a sense of dependency (Parr, 2007; Worrall et al., 2011). More specifically, PWA’s need for modified materials inherently creates a situation in which they must rely on others due to the time and skill required to adapt written text to “aphasia friendly” formatting. Despite the reality that no single format or support will satisfy the needs and preferences of each individual, further research is warranted to determine if the comprehension benefits of “aphasia-friendly” formatting outweigh the dependency on others to modify the materials. Combined modality use. Previous literature also indicates that combined modality input can improve comprehension for some PWA (Brown et al., in press; Dietz