Abstract Book Club Experiences, Engagement

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

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

This Thesis titled

BOOK CLUB EXPERIENCES, ENGAGEMENT, AND READING COMPENSATORY STRATEGY USE FOR PEOPLE WITH APHASIA

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

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.

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.

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 et al., 2009; Dietz et al., 2014; Wallace et al., 2003). More specifically, written text when juxtaposed with visual and/or auditory support can decreases cognitive load, increase access to previous knowledge and facilitate redundancy of information (McNeil, 1983; McNeil, Odell, & Tseng, 1991; Murray, 1999). Brown and colleagues (in press) recently found that some PWA exhibit improved comprehension when auditory information is presented simultaneously with written text. In addition, most PWA report higher levels of confidence and comprehension ease when written text is presented in conjunction with added visuographic or auditory supports (Brown, et al., in press; Dietz, 2009; Knollman-Porter et al., 2015; Worrall et al., 2005). Text-to-speech technology, provides PWA a method to independently receive combined written and auditory

2 input of reading materials of personal interest. However, the degree to which PWA utilize and find combined modality supports helpful outside of the therapy environment is only beginning to be examined (Dietz et al., 2011; Kjellen et al., 2017; Knollman-Porter et al., 2015). Alternative methods to access written text. People with severe reading deficits associated with aphasia may require an alternative means to access reading materials of personal interest. For example, PWA can bypass decoding and comprehending written text by receiving partner support or auditory-only input via audiobooks (Dietz et al., 2011; Knollman-Porter et al., 2015). For example, partner assist is a process in which a family or friend acts as an external aid to either summarize or read the text aloud to the PWA (Knollman-Porter et al., 2015). Actively including family members in the rehabilitation process can help the PWA manage their aphasia symptoms both practically and emotionally (Brown, Worrall, Davidson, & Howe, 2010). Some PWA report that family and/or spouse support during reading activities is beneficial, if not essential (Kjellen et al., 2017). On the other hand, a small number of participants found this method of reading undesirable due to feelings of dependence (Knollman-Porter et al., 2015). Similarly, audiobooks, previously known as audiotapes or books on tape, allow PWA to independently listen to the text without reading. Audiobooks are easily obtained from local libraries and offer an inexpensive way to access novels. In previous literature, some PWA reported that the use of audiobooks was convenient, and they appreciated being able to adjust the speed of reading (Kjellen et al., 2017; Knollman-Porter et al., 2015). The ease of access to audiobooks and the ability to adjust the rate of speech can increase independence for PWA while reading. However, other PWA may have difficulty interpreting the audio output secondary to impaired auditory comprehension often associated with aphasia, the type of digital voice used in the device (Caute et al., 2016; Hux, Knollman-Porter, Brown, & Wallace, 2017) and/or the speed of voice presentation (Kjellen et al., 2017). Reading strategies. Individuals with aphasia can also utilize self-directed strategies to promote reading comprehension during reading tasks. Reading strategies employed by PWA serve four basic functions: efficiency (used to increase speed and accuracy of reading), contextualization (use of background knowledge to improve accuracy), comprehension (use of accommodations to construct meaning), and socialization (use of verbal and nonverbal cues to aid comprehension during interactions) (Lynch et al., 2013). Some specific examples of reading strategies include prioritization of meaning over accuracy, regression during reading, or pacing

(Knollman-Porter et al., 2015; Lynch et al., 2013). More specifically, prioritization of meaning over accuracy means PWA are attempting to determine the general meaning of the text as opposed to focusing on detailed accuracy (Lynch et al., 2013). Regression during reading refers to going back and re-reading several words, sentences, or paragraphs if meaning is lost (Lynch et al., 2013. Lastly, PWA are utilizing pacing (Knollman-Porter et al., 2015; Lynch et al., 2013), which means slowing down the overall pace of reading, or pausing when complex or unfamiliar words appear (Lynch et al., 2013). It is evident that PWA are adapting their reading experiences to improve reading comprehension by finding personalized strategies to implement based on their unique needs, interests, and abilities (Knollman-Porter et al., 2015; Lynch et al., 2013). However, further research is warranted regarding which strategies and supports are perceived as helpful or not helpful by PWA in functional, unstructured reading tasks. Book Clubs for PWA For the general population, book club participation is a concept that is both long- established and well-known (Morgan-Witts, 2015; Smith & Galbraith, 2011). Across the United States, book clubs have been reported as an enjoyable activity for both casual and avid readers (Harvey & Tuvey, 2001; Morgan-Witts, 2015) and estimates suggest popularity has increased greatly in the last decade. Previous research indicates that two of the greatest factors influencing book club participation is time and desire to connect or engage with the community (Kerka, 1996; Morgan-Witts, 2015). Moreover, the literature indicates that many adults in society enjoy book club participation because of the informal, minimally structured environment (Bauman, 1994; Kerka, 1996). The idea of implementing book clubs for groups of PWA has only been explored clinically. For over 10 years, book club participation has anecdotally helped people with chronic reading deficits secondary to aphasia reconnect with literature and “read” for pleasure (Bernstein-Ellis & Elman, 2006). The structure of a book club is markedly adapted and modified from traditional book clubs to make the group more accessible to people with reading impairments of all types and severities (Elman & Bernstein-Ellis, 2006; Triandafilou, 2003). The creators aimed to provide an avenue for PWA to engage with and enjoy the reading materials that their friends and family may be reading (Elman & Bernstein-Ellis, 2006). For this reason, traditional, non-modified books that people with and without aphasia find enjoyable are used (Elman & Bernstein-Ellis, 2006; Triandafilou, 2003).

To combat the reading challenges often experienced by PWA the book club content is made more accessible through the use of “reading ramps” (Bernstein-Ellis & Elman, 2006). These ramps adapt the literature and accommodate reading deficits with additional reading supports. Various supports include text adaptations such as large print and audiobooks, as well as chapter summaries, vocabulary lists, character guides, and worksheets (Bernstein-Ellis & Elman, 2006). “Reading ramps” reiterate key information and encourage PWA to make personal connections to improve comprehension (Bernstein-Ellis & Elman, 2006). Although these supports have been examined in structured clinical environments, there is limited research examining the degree to which PWA utilize the supports in unstructured environments and if they are perceived as helpful or not helpful. In addition, based on the different methods of text access and use of supports, it is unclear the degree to which individuals with different types and degrees of aphasia adapt to the book club environment. Despite the availability and access to various reading supports, it is uncertain if reading engagement will increase during book club activities. Lastly, the attitudes of PWA towards book clubs, their willingness to participate, and perceived benefits of the group is largely unknown. Aphasia support groups. Aphasia support groups allow PWA to socialize with others who share similar issues and feelings, which may improve a person’s psychosocial functioning and quality of life (Elman & Bernstein-Ellis, 1999; Cruice et al., 2010; Vickers, 2010; Lanyon, Rose, & Worrall, 2013; Rose & Attard, 2015). These groups also may improve social networks and community access (Lanyon et al., 2013). Book club programs mirror the general format of many aphasia support groups. Thus, it is assumed that book clubs may also promote increased participation and reduce social isolation for this population. There is an abundance of research that has described the psychosocial advantages of aphasia support groups; however, there is no evidence in the literature examining the perceived social benefits of a book club for PWA. Present Study The World Health Organization (WHO) created the International Classification of Functioning, Disability, and Health (ICF) in 2001. This framework emphasizes the interrelationship between a person’s health and functioning in rehabilitation and the subsequent impact they have on everyday activities and participation in societal roles. Additionally, the ICF focuses on the environmental factors (e.g., physical ability, social support, attitudes, and available services) that may act as barriers to communicative functioning (WHO, 2001). Various

5 environmental and personal factors avert PWA from attempting to read post-stroke, resulting in decreased participation and social isolation. In order to prevent participation restriction, clinicians must reassess traditional treatment methods and environments to provide services and supports that are accessible and meaningful to PWA (WHO, 2011). Given the evident decrease in participation and quality of life associated with chronic reading impairments (Kjellen et al., 2017; Knollman-Porter et al., 2015; Parr, 2007), it is important to evaluate the social validity of book clubs for PWA. Clinicians have utilized book clubs for PWA, as well as reading “ramps”, strategies, and supports for several years. However, no known empirical data exists examining the experiences of and opinions about book clubs from PWA themselves in this environment. Therefore, the specific purpose of this study is to describe the perceptions and experiences of people with aphasia participating within the context of a book club for the first time. The research questions addressed include the following: 1. How do people with chronic aphasia describe the essence of their reading abilities and experiences pre- and post- the acquisition of aphasia? 2. How do people with chronic aphasia describe the essence of their reading abilities and experiences before, during, and after the implementation of the book club? 3. What strategies and external supports do people with chronic aphasia prefer to use and deem helpful when performing book club reading tasks? 4. Do people with chronic aphasia describe any indirect benefits gained from participating in the book club? Methods Participants Participants included 10 adults diagnosed with aphasia, including seven females and three males ranging in age from 33 to 77 years (M = 61.8, SD = 13.44 years). Participants ranged from 31 to 222 months post-stroke (M = 118.7, SD = 67.31). The participants were recruited from a support group for people with aphasia through convenience sampling. Inclusion criteria for the study include: a diagnosis of aphasia as demonstrated by a score of less than 93.8 on the Western Aphasia Battery-Revised (WAB-R) (Kertesz, 2006); be at least 6 months post-onset of left- hemisphere stroke; be a speaker of American English; self-report of difficulty reading since the onset of stroke; have had no previous participation in a book club; demonstrate hearing and vision adequate to participate. Each participant passed a hearing screening by responding to 45

6 dB HL tones presented at 1000, 2000, and 4000 Hz in at least one ear. Participants also passed a vision screening requiring location of their first name each of ten times it appeared in display of 50 names typed with 24-point, Times New Roman font. Performance on the Aphasia Quotient portion of the Western Aphasia Battery-Revised (WAB-R, Kertesz, 2006) revealed that participants had varying severities and types of aphasia (See Table 1). The inferential and factual paragraph level subtests of the Reading Comprehension Battery of Aphasia-2 (RCBA-2; LaPointe & Horner, 1998) were also administered. Performance scores ranged from 5 to 10 on each subtest, with a maximum possible score of 10 (Paragraph Factual: M=8, SD=2.21; Paragraph Inferential: M=6.4, SD=2.27). No participant received a score of 10 on both subtests. In addition, all participants self-reported some degree of difficulty reading since their stroke. None were receiving speech- language pathology services at the time of study participation. Informed consent was obtained prior to study participation. This study was approved by the Institutional Review Board. See Table 1 for demographic and testing information. Materials The non-modified version of the New York Times bestseller novel selected for the book club was 194 pages in length with an average Flesch-Kincaid Grade Level of 6. Participants could utilize traditional paper book format, large print book, book on tape, and/or use a tablet for text-to-speech access. Optional supplemental materials in paper format (e.g., chapter summaries and questions) were obtained from The Book ConnectionTM (Aphasia Center of California, 2006). These materials were modified only to accommodate changes in the study schedule. Chapter summaries included brief highlights from each chapter included in the assigned reading for the week. The chapter questions contained multiple choice questions that covered the main themes and content of the story and prompted participants to make personal connections to the events and characters (Bernstein-Ellis & Elman, 2006). A 133-minute film adaptation of the chosen novel was utilized in conjunction with the aforementioned materials. See Table 2 below for detailed information about the supplemental materials. Procedure Data from multiple sources were triangulated, including: 1) written questionnaire responses, 2) weekly questionnaire responses collected during book club sessions, 3) verbal comments and gestures made during post-book club semi-structured interviews.

Table 1

Participants’ Demographic and Diagnostic Results

WAB-R RCBA-2 RCBA-2 Age Months Post Education Gender Aphasia Type Aphasia Paragraph Paragraph (yrs) Onset (yrs) Quotient Factual Inferential

P1 73 M 62 12 Anomic 75.2 10 5

P2 48 M 115 16 Broca’s 68.6 8 10

P3 77 F 67 12 Anomic 76.3 8 7

Transcortical P4 71 F 68 12 67.1 7 7 Sensory

P5 71 F 222 16 Broca’s 27.0* 10 5

P6 63 F 221 14 Broca’s 74.0 3 2

P7 62 F 175 12 Conduction 76.0 7 5

P8 33 F 31 18 Broca’s 86.2 10 9

P9 54 M 124 13 Wernicke’s 66.1 7 7

P10 66 F 102 14 Anomic 78.6 10 7 *Participant has apraxia of speech

Table 2

Supplemental Materials Flesch- Average Page Materials Description Kincaid Sample Length Grade Level “People often belittle the Fictional, NY Times Total: 194 place where they were born. Novel bestseller novel 6 Avg/session: 27 But heaven can be found in published in 2006 the most unlikely corners” 2 “Ruby explains how her Bulleted list of heaven is a place where Chapter condensed chapter 3 3.97 anyone who ever had been Summaries highlights1 hurt or suffered at Ruby Pier is kept safe.” 2

Multiple choice questions to prompt “Eddie worked at Ruby Pier Chapter personal his whole life. How many 2.5 4.9 Questions connections and different jobs did YOU hold reactions to the during your career?” 2 reading1

1 (Aphasia Center of California, 2006) 2 (Albom, 2003)

Pre-Book Club. Before the start of the book club, participants completed written questionnaires related to demographic information, aphasia acquisition, and pre- and post- aphasia reading experiences and/or behaviors. Caregivers could assist with the completion of these questionnaires. Questionnaire topic areas included: 1) previous participation in book clubs, 2) reading material preferences, behaviors, and frequencies before onset of aphasia, 3) current supports, strategies, or technology used to support reading comprehension. Each participant engaged in a clinical interview with us to compile a reading history. We employed supportive conversational techniques to clarify responses. We created a list of 8 well-known, non-modified novels with images of each book cover and short summaries for participants to select their preferred book. The book that received the highest interest from potential members was chosen for the book club. Participants then selected their preferred method (e.g., traditional book, audiobook, text-to-speech) to access the content of the novel. Participants were not constrained to one method of access and were encouraged to experiment with various methods throughout the experience. Book Club. The book club was divided into two groups with an average of 5 participants in each group. The groups met 2 times per month for 7, 1.5-hour meetings in which participants discussed a small section of the book (M=27 pages, SD=12). A licensed speech-language pathologist with over 25 years of experience working with people with aphasia and 3-4 trained graduate students were present to facilitate book club discussions. We guided participants through a brief survey during book club sessions to gauge participants’ expectations, feelings, reading behaviors, and self-perceived abilities with regard to reading (See Appendix A to view detailed survey information). Supportive conversational techniques were utilized to facilitate participant comprehension and completion of the survey. Prior to discussion, participants viewed a 5 to 20-minute segment of the movie that paralleled the events depicted in the assigned reading for that week. The remainder of the session was used to discuss opinions, reactions, and questions related to book content, as well as personal experiences with the topics (e.g., weddings, relationships with parents, sacrifice). Discussions were based on pre-determined open-ended questions, but participants could change the direction of the discussion based on ideas, opinions, and comments. All participants had an equal opportunity to participate and provide input in group discussions. We utilized supportive conversational techniques to help the participants express thoughts and ideas if they

10 could not do so independently. However, participants were encouraged to be as independent as possible. Post-Book Club. Participants completed an individualized 30-90 minute interview with the investigators. Interviews were semi-structured with pre-established questions as well as personalized probe questions to elicit supplemental responses. Each interview started with a review of written questionnaire responses. Interview questions related to their experiences within the book club environment (see Appendix B). We used supportive conversational techniques, such as gesturing, writing key words, and restating ideas, to relay open-ended and multiple choice questions to aid in comprehension. In the instance of communication breakdown, we reiterated and/or rephrased interview questions and used multiple verification procedures to confirm participant responses. All interviews were video and audio taped to capture both verbal and non-verbal responses for future analysis. Study Design A qualitative phenomenological design to explore the experiences, preferences, and strategy use for adults with aphasia within the structure of the book club. Phenomenology is a philosophy that studies human experience and results in the understanding of how we experience the world (Creswell, 2013; Hinckley, 2014; Richards & Morse, 2007). This approach operates under the assumption that there is a crucial difference between scientific knowledge of a disability and clinical practice versus living with a communication disorder and the associated day-to-day experiences (Hinckley, 2014). Phenomenological research contains three key elements: 1) a first-person perspective of experiences as opposed to a second or third-hand interpretation of those experiences, 2) description of individual, lived-experiences in common everyday events, and 3) an active process of reflection and radical disengagement from the participant experience (Creswell, 2013; Hinckley, 2014; Richards & Morse, 2007). This approach seeks to reduce potential researcher bias through the act of disengagement from the participant’s experiences and continuous, critical reflection on themselves as researchers (Hinckley, 2014). Given that all members of the research team were trained in speech-language pathology and had experience providing services to adults with aphasia, personal biases and assumptions could have influenced the interpretations and findings of this study. To combat this, we engaged in active, critical self-reflection throughout the study to ensure that findings

11 accurately described the participant’s shared experiences rather than our interpretations of those experiences. Data Analysis Analysis procedures. Trained research assistants transcribed all verbal and non-verbal responses communicated by participants with aphasia in each post-book club interview. Three investigators independently read and coded various themes in one participant transcript. The first step of analysis involved reading the transcript several times to gain an overall understanding of the experiences and ideas described by the participant. We then identified meaningful phrases or sentences that pertained directly to research questions and the overall experiences of the participants within the book club. Next, the three investigators met to review themes and identify any discrepancies in the single transcript to establish intercoder consistency and validity of themes for future analysis. The remaining transcripts were coded for themes with 95% agreement between coders. Discrepancies were discussed until consensus was reached. Following independent analysis, two researchers compared themes to identify overlapping ideas and clustered similar ones into both themes and subthemes across all participants. Verification procedures. Triangulation and member-checking were used as verification procedures throughout the analysis process. These procedures were used in direct correlation to the assumption that using multiple methods produces more valid and generalizable results by off- setting the limitations of one method with the assets of another (Carter, Bryant-Lukosius, DiCenso, Blythe, & Neville, 2014; Turner, Cardinal, & Burton, 2017). In this study, we used several methods of triangulation, including method (e.g., quantitative surveys, qualitative interviews, observations, etc.) and investigator (e.g., multiple researchers used to analyze and make conclusions about data). Member-checking, also known as participant validation, is a validation technique that actively involves the participant in the confirmation of responses and results in order to minimize any potential misinterpretations of the data (Birt, Scott, Cavers, Campbell, & Walter, 2016). This method of verification is essential when working with people with aphasia as ideas and responses may be misunderstood due to communication limitations. Through member-checking, participants were given frequent opportunities confirm or deny the message and intent of the information that they provided to the researchers (Birt et al., 2016; Merriam, 2009). We accomplished this by providing summary statements, asking yes/no questions, and asking follow-up questions.

Results Pre-Aphasia Reading History All participants reported adequate reading skills prior to acquiring aphasia (P3: Um, before, okay [thumbs up] talking okay [nods head]. Then, stroke and aphasia; P9: …well that’s what I’m saying, I could do it [reading] before). No participant reported requiring assistance or support to read and all had at least a high school education. When reading a novel, all participants reported using traditional, paper-based formats. No participants indicated using technology to read pre-stroke. Seven participants reported positive attitudes towards reading and spent five or more hours per week reading novels and/or short stories prior to stroke onset (P3, 4, 5, 6, 8, 9, 10) (P3: “…because I loved to read…that’s what I used to do; P4: Books, a lot of books. And I used to read them one right after another; P8: I read a lot um before my stroke, um I read tons and tons and tons). On the contrary, three participants reported not enjoying or spending time reading novels pre-aphasia (P1, 2, 7) (P1: I didn’t like to read; P2: no book back when; P7: I never had a book ever in my life). However, 6/10 participants (P1, 2, 4, 6, 8, 10) reported spending multiple hours (M=3.5, SD=1.64) per week reading work-related materials. On average, participants spent 16.8 hours per week reading (SD=10.59) before they had aphasia. See Table 3 for detailed information regarding participant pre- and post-aphasia reading frequencies. Three main themes transpired from the data analysis: 1) perceived changes in attitudes about book club participation and reading, 2) differences in methods and use of reading supports and strategies across participants, and 3) perceived social benefits of book club. Attitudes About Reading: Pre-Book Club Post-stroke, participants reported engaging with reading materials for an average of 8.55 hours per week (SD= 8.26). More specifically, a subset of seven participants (P1, 3, 4, 6, 8, 9, 10) reported spending less hours per week reading than they had been prior to their stroke. In addition, reading materials were shorter in length (e.g., newspaper articles, emails, text messages) when compared with pre-aphasia reading materials. Of the 10 participants, seven had not read a novel since acquiring aphasia (P1, 3, 4, 6, 7, 9, 10) (P1: none; P3: nothing; P9: This is the first). Rationale for not reading novels included difficulty comprehending or reading taking too long (P1: Poor, poor…real slow; P2: Too hard…long… terrible; P4: I kinda forget what I

Table 3

Self-Reported Pre- and Post-Aphasia Reading Frequencies Participant Pre-Aphasia Post-Aphasia Total # of hours spent reading/week Total # of hours spent reading/week P1 11 2 P2 15 15* P3 10 2 P4 32 10 P5 16 26 P6 19 8 P7 1 5 P8 35 19 P9 7 1 P10 24 5 *Post-aphasia reading solely involved text-to-speech support

14 read and I have to go back in the book; P3: I had tried to at home and I couldn’t do it; P9: No, I can’t. That’s what I’m saying. I want to, but it’s hard). Seven participants reported that they were unable to read and thus refrained from engagement with longer reading materials (P1, 3, 4, 6, 7, 9, 10) (P3: I really did fight it… and I said, I can’t do this; P4: I can’t pick it up and read it; P6: …because I can’t. I don’t read; P7: If I do it myself, I couldn’t do anything; P9: But when I first did, I couldn’t do that, I couldn’t do that because I can’t do big things; P10: Uh I thought that I uh… unable to). In contrast, three people reported either spending the same amount of time, if not more, engaging with reading materials since their stroke (P2, 5, 7). Rationale for reading more frequently included increased free time and boredom subsequent to loss of occupational demands following their stroke. Another subset of three participants specifically reported reading novels since their stroke (P2, 5, 8) (P2: number of books read: ten…bored; P5: number of books read: five; P8: But I got maybe 4 books so that’s not bad). However, these participants indicated that reading was more difficult for them when compared with pre-aphasia reading ability (P2: Stroke and aphasia, then reading…terrible words…; P8: Very frustrating, very frustrating…because I couldn’t read the same pace as reading it as I could…it was slower. I was so quick about it, you know what I mean? And after, after my stroke, I was so slow. Um… um. And I... the words were not coming). In addition, P8 indicated that although she was reading novels post-stroke, she was reading significantly less per week than she had been before acquiring aphasia (pre-aphasia: M=35 hours; post-aphasia: M=19 hours). She also stated that her ability to read efficiently continues to be unsatisfactory (P8: It takes me longer to… to read. It’s getting better, definitely getting better, but it’s not quite better). In contrast, P2 indicated that he was reading more frequently secondary to experiencing boredom because he was no longer working and thus had more free time after his stroke (P2: Then, stroke and aphasia. Depressing. Working, no working. Friends, no friends. Bored). With that being said, P2 had attempted reading via traditional methods following the onset of his stroke, but was unsuccessful. This led him to initiate the use of alternative methods of access via text-to-speech technology and has since been using this method to read. Attitudes About Book Club Participation: Pre-Book Club None of the participants had prior experience participating in a book club. Furthermore,

9 out of 10 participants reported feeling nervous or scared to participate in a book club (P1, 2, 3, 4, 6, 7, 8, 9, 10) (P1: I was nervous; P2: Hesitant; P3: I was a little nervous about it; P4: It was sorta scary to me; P9: Leery). Participants indicated feeling apprehensive due to unfamiliarity with book clubs in general and perceptions of having inadequate reading skills (P1: I didn’t know what was coming P3: I was just afraid I, I was too afraid I would not be able to do it; P7: Well, just because I don’t think I’m very good about…things). Furthermore, three participants reported being more nervous about the discussion aspect of the book club than the reading (P6, 8, 10) (P6: We can’t say anything; P8: Nervous for the talking part; P10: Nervous because I can’t talk). However, P5 indicated that she was “fine” and not nervous to participate. Differences in Use of Reading Methods, Strategies and Supports Methods of accessing reading materials. Participants used a variety of methods to access the book club reading materials. Five participants independently read the non-modified version of the paperback book (P3 4, 5, 8, 9) using the same method of reading as they used before acquiring aphasia. P4, however, independently read the non-modified book, but stated that her spouse was available to offer clarification as needed (P4: [Spouse] didn’t really read it…he helped me several times if I couldn’t say something or ask him about it and if I’m thinking the right way). In contrast, three participants read the non-modified version of the book in combination with auditory support from a spouse or technology (P2, 6, 10). For example, P10 solely listened to the assigned section of the book using an audiobook first, which she then followed with an attempt to read the non-modified paperback book without supports (P10: Um, tape… then I’d, uh, read it). Both P2 and P6 read and listened to the text simultaneously. More specifically, P2 utilized text-to-speech technology (P2: Text-to-speaking words. Amazon Kindle™), while P6 read and followed along while her spouse read to her aloud (P6: no he would be all the time and I would just I would listen to him). P2 had previously established using text-to-speech technology prior to the start of the book club (Nine years… Words, words, messed up words. Then text-to- speaking, okay!). He stated that reading would be too difficult to attempt without the use of this support (P2: too hard…wouldn’t even try). On the other hand, P6 reported feelings of frustration and isolation when her husband did not exude understanding during shared reading tasks (P6: He doesn’t understand…he’s probably really smart). Because of this perceived lack of patience from her spouse, she stated that he often

16 became frustrated when reading together (P6: Yeah [frustrated] about me… with me). Thus, reading together occasionally led to disagreements (P6: Bickering; I wanted to read… but it’s so I can’t read it… He said ‘no, I don’t want you to read it aloud’). P6 also expressed feelings of co-dependency because she relied on him to finish the book during the book club (I did, I wanted to read… Because I can’t… I don’t read and I can’t tell him to come over and read). Two participants relied solely on their spouse to read the text aloud to them (P1, 7) (P1: Read it together; P7: My husband helped me). Both participants reported that this experience of accessing the text via her spouse was positive (P7: He is good about that, cause say for sure if I don’t get it, then he’ll say and he’ll go back [motions backwards with hand] and say). P1 indicated that he received encouragement from his wife during the book club. See Table 3 for detailed information regarding supports and strategies used by each participant. Eight participants maintained their chosen strategy to access the book throughout the club (P1, 2, 3, 4, 5, 6, 8, 9) while 2 reported a change either due to perceived level of difficulty or disinterest (P7, 10). One participant modified her reading methods in a way that allowed her to continue engaging with the written text (P10) and one participant opted to utilize alternative methods (P7). For example, P10 first attempted to access the book by exclusively reading the non-modified text. However, she quickly determined this strategy was too difficult for her and decided to switch methods. Within the first book club session, P10 was introduced to accessing the text via an audiobook for the first time. She chose to listen to the story first, then read the corresponding section multiple times. In contrast, P7 started the book club using her iPad as an e-reader so she could listen and follow along, but later decided to transition to having her husband read it aloud to her (I did a little bit, and then I didn’t do it anymore). Towards the end, P7 did not engage with the written materials and chose to solely watch the movie with the group and participate in group discussions. She reported that she never liked to read and was not interested in continuing to read or listen to the book (If this never happened to me, I never liked it even before). Although this change in method did not increase reading engagement for P7, she was able to participate in the aspects of the book club that she enjoyed most (e.g., book discussions and socializing with others) (P7: Talking about what’s happened to you… that was the best…I thought it was great; They were listening and what they…something different what you said… and everybody’s different and that was my favorite).

Reading Strategies. Throughout the book club, participants employed various strategies to facilitate text comprehension. All participants paced their reading efforts to some extent by only attempting to read a small amount or section of the text at a time, as opposed to attempting to read larger sections in one sitting. While the nature of the book club encouraged pacing via a pre-determined reading schedule, each participant paced their reading based on their unique needs and circumstances (P7: I could only do it for so long; P9: I think it’s very good for me to do um three pages and then just quit… and then …then start again… I have to do a little bit each day. I can’t do a whole book; P10: Section, a section). In addition, eight participants felt that the pre-determined pacing of the book club (M=27 pages per week, SD=11.85) was just the right amount (P2, 3, 4, 5, 6, 8, 9, 10). On the other hand, two participants stated it was too much to read at a time (P1, P7). Another strategy used frequently by participants was re-reading the text or listening to a story aurally multiple times to improve comprehension. Seven participants found that repetition of the book content helped them better understand the story (P1, 2, 4, 5, 7, 8, 10) (P1: Read each section twice; P4: The first time I read the first group, I re-read it two or three times; P7: I would do really good, but if you would go back again, and that helps). Supplemental book club materials. Supplemental materials, such as the chapter summaries, chapter questions, or the movie adaptation of the book, were made available to all participants. Participants were able to voluntarily choose to use or not use these materials throughout the book club. Chapter summaries and questions. Eight participants used the chapter summaries to reiterate or emphasize important information from the text and thus improve comprehension (P1, 3, 4, 5, 6, 8, 9, 10). Five participants stated that the summaries helped verify their understanding of what was read (P3, 4, 6, 8, 10) (P3: I didn’t at first, but then I started after that. Then I started going back and I would go back and read it. And I thought it was helpful; P4: Great. It double checked what I did and I thought, ‘yeah I remember that’; P8: The summary was helpful for me just looking back). Two participants (P2, P9) indicated that the summaries were too long. Specifically, P9 stated that he found them to be helpful, but would prefer a shorter version (Well, it does, it does. But it’s um…too long). In contrast, P2 reported not using chapter summaries, but would have used them more if they were in digital format, so it could be accessible with text-to- speech technology (No no… text-to-speaking yes). Similarly, the chapter questions were also

18 used to supplement and verify participants’ understanding of each chapter. Five participants stated that they used these guided questions and found them beneficial (P3, 4, 5, 6, 9) (P3: I tried, yeah I did. It helped me, I think it helped me to do that; P9: Always, yes. Very good, very good). The five remaining participants were indifferent about using the questions or did not choose to use them. Post-reading movie viewing. All participants reported that they appreciated and found beneficial watching a portion of the movie prior to book discussions (P4: Oh, it was great; P7: I really loved that; P8: I definitely liked the movie). More specifically, the movie was beneficial and aided their comprehension of the novel (P1: It was, uh, easier: P3: It would be harder…if wouldn’t have had the movie. I thought that helped a lot). Furthermore, participants reported that the movie provided clarification of the story events that they had just read (P4: It kinda drew some of the things to you that you didn’t know, but didn’t seem to think about it. And when that come on that I thought, ‘that’s what he said, that’s what he did, I remember that now.’; P6: I kind of liked it because you got to see you know what you were reading and did it match what you were thinking; P8: I loved the movie…I think it helped other, -- me and the other people um because you pick up more things). See Table 4 for detailed information regarding methods, supports, and strategies used by participants while reading. Social Engagement and Emotional Support An additional benefit of the book club as reported by participants with aphasia was that it provided an opportunity for increased engagement via a structured, reoccurring social activity. Four participants reported that since acquiring aphasia, they were bored and were looking for activities to fill time (P2, 4, 6, 8) (P2: Oh God, bored. I am bored… depressing after stroke. No longer working; P6: I don’t have anything to do; P8: I just wanted to find something to do with my time). Participants also reported several benefits of the book club related to the group environment as a whole, such as encouraging them to socialize with new people. All participants indicated meeting new people and talking with others as a benefit of the book club (P2: Talking, talking… meeting friends; P4: I go sit down and I’m like ‘well I don’ know who I’m gonna sit with...[laughs] and I’m sittin’ more people now. And getting more friends with people; P9: Interacting. I like interacting). The book club also sparked a motivation and excitement to initiate conversations with people outside of the book club. Five participants reported starting

Table 4

Reading Methods, Supports, and Strategies Utilized

Method Used to Access Written Text Supplemental Materials Strategies Read Book Read Combined Spouse Written Chapter Chapter Repetition with Audiobook Read Movie Pacing Text Summaries Questions of Material*** Auditory Aloud Only Input P1 X X X X X P2 *X X X X P3 X X X X X P4 X X X X X X P5 X X X X X X P6 X X X X X X P7 X X X X P8 **X X X X X P9 X X X X X P10 X X X X X X * Used text-to-speech technology to access the text ** Used Kindle to access the text *** Repetition includes re-reading of text or replaying auditory information

20 discussions about the book or book club with family, close friends, or acquaintances (P2, 3, 5, 6, 7) (P3: I would ask friends that I knew read and just curious if they had, if they had read the book; P7: I told everybody. I told them about the book). P5 stated that she also started conversation with her hairdresser about the book and received encouragement from her. Furthermore, eight participants reported group support and encouragement as a benefit of book club (P1, 2, 3, 4, 6, 7, 8, 10) (P4: Because I said things and then they said things. They cried things and I had cried a couple things. And it just came back and forth, it was great! Cause they talked, I talked. I probably talked a lot of stuff and I had never talked to anybody; P6: With people that are stroke (brushes affected arm… it doesn’t matter, you know everybody knows, we all here together; P7: We did it all together, which was the greatest thing for me). In addition, the group environment of the book club allowed PWA to recognize that there are other PWA facing similar difficulties, especially with reading. More specifically, seven out of 10 participants stated that being with others who understood them and their unique challenges was a benefit of the book club (P3, 4, 5, 6, 7, 8, 10) (P3: It was just nice to listen to the people who were there with us, and admitting that they have problems… Because I think…I’m the only one. And I’m not the only one; P4: I thought it was just me that couldn’t read…they were just like me; P7: Even with your best friends, and your husbands or whatever, but when you come here, they know exactly what it feels like; P8: I’m in the same boat, you know what I mean? And I’m so like communicating and talking and it’s hard for me too so I’m feeling that way too). P10 reported feeling flabbergasted when she realized that other participants had similar difficulties with reading, as well. Attitudes about reading: Post-book club After the implementation of the book club, eight participants reported increased confidence (P1,2,3,4,5,6,9,10) (P3: I feel a little more confident and more excited about going into again…I can do it. I know I can; P9; More, more, more [confident]…. I didn’t think I could do it… I couldn’t – I. Then it was good, very good). On the other hand, two participants reported “no change” in their level of confidence after the book club (P7, 8) (P7: Just the same; P8: I think about the same because I was doing it before). Seven participants stated that they will continue to read novels (P2, 3, 4, 5, 8, 9, 10) (P4: I be back to reading more; P8: Absolutely; P9: I think um I’m gonna try). Three of these seven participants had already begun reading other books at the time of the final interview (P3, 4, 10)

(P3: Now I’m reading again… in fact, my husband’s been in the hospital and I had a book… Then I took the book because he had been wanting to read the book but didn’t want to do it by himself... so I just sat and read to him; P4: Well, I got it out last week and glanced and thought, ‘I can’t remember that’… so I started reading it and started finding the good parts in it, the good ends, and buddy I finished it; P10: I got a book on tape… of phone…here. I got a book on tape of (newspaper) and uh uh… it reads to me). Of the remaining three participants, P6 was unsure if she would continue reading (Maybe) and both P1 and P7 do not intend to continue reading outside of the book club. Attitudes about book club: Post-book club. All participants reported enjoying a book club specifically designed for PWA (P1: It was great, it was great…it was interesting; P3: [I] enjoyed it and I think everybody did; P7: I thought it was good. Not about just the writing and doing all that stuff, but just to talk was my favorite; P8: I think book club is with aphasia is great; P9: Very, very nice). Similarly, all participants indicated that they would recommend a book club to other people with aphasia (P3: Because this is such a good experience here for me, then I want everybody… to have it; P8: I think this experience with um reading and talking and um being part of a group is fabulous… I’d recommend it um ten-fold…; P10: I recommend to uh, do it…Uh, come on, uh, and join in). Nine of the 10 participants have subsequently signed up to participate in the next book club (P1, 2, 3, 4, 5, 6, 8, 9, 10). Discussion Therapy approaches in the present rehabilitation climate are becoming more client- centered and emphasize the importance of increasing daily participation and quality of life for PWA (LPAA Project Group, 2001). Furthermore, these models encourage active reengagement in society and desired activities (LPAA Project Group, 2001). The shift toward a greater focus on real-life outcomes occurred after an identified need for interventions that improved overall well- being (Brown, Worrall, Davidson, & Howe, 2012; Hilari, Needle, & Harrison, 2012; Parr et al., 1997; Ross & Wertz, 2003) and reduced social isolation that often results following the acquisition of aphasia (Attard, Lanyon, Togher, & Rose, 2015; Davidson, Howe, Worrall, Hickson, & Togher, 2008; Howe et al., 2008; Elman & Bernstein-Ellis, 1999; Hilari & Northcott, 2006; Worrall et al., 2011). More than a decade ago, book clubs were developed for PWA in response to the evident impact of reduced reading abilities on quality of life and participation

(Bernstein-Ellis & Elman, 2006). Results from the current study demonstrated that participation in book clubs can help PWA reengage with valued reading activities and increase social participation. The literature indicates that book clubs for the general population provide a meaningful activity to fill time, as well as offer an opportunity to be involved with the community and connect and engage with other adults (Morgan-Witts, 2015; Smith & Gailbraith, 2011). Additionally, these groups have a casual atmosphere that fosters turn-taking, collaboration, personal sharing, and equality in discussion that are often absent in more orderly settings (Addington, 2001; Bauman, 1994; Kerka, 1996; Smith & Gailbraith, 2011). This conversational learning style enables group members to be their own teachers by exploring ideas together and contributing personal experiences and opinions to the discussion (Baker, Jensen, & Kolb, 2005; Jacobsohn, 1994; Smith, 1996). Results from the current study suggest that book clubs designed particularly for PWA can produce similar advantages as traditional clubs along with additional benefits. More specifically, study participants reported a greater interest and desire to attempt reading tasks, a willingness to explore a variety of methods or supports to re-engage with longer length written materials, as well as an added increase in socialization and emotional support from fellow members in the aphasia community. Furthermore, present outcomes also indicate that book club formats can emulate the initiative to provide services that focus on real-life, consumer-driven outcomes (LPAA Project Group, 2001). Changes in attitudes about reading and book clubs Since the acquisition of aphasia, most participants had not attempted reading a book even though many reported a genuine love of reading novels prior to their stroke. Moreover, no participant had previous experience in a book club prior to this study. In addition, most PWA felt their reading skills were inadequate to perform reading tasks and thus reported being scared or nervous to participate in a book club. Mumby and colleagues (2013) found that some PWA described feelings of denial that manifested as disengagement or avoidance of tasks perceived as challenging (e.g., literacy activities, interacting in larger group settings, talking on the phone). Some PWA avoided specific tasks due to the distress of potential failure, feelings of shame and frustration, and fear of the negative reactions of others (Dalemans et al., 2010; Kjellan et al., 2017; Mumby & Whitworth, 2013). The outcomes from the present study supports previous

23 research indicating attitudinal barriers may restrict PWA from initiating participation in activities previously enjoyed (Dalemans et al., 2010; Mumby & Whitworth, 2013) unless support and encouragement is provided. When starting a new task or returning to a known endeavor after an extended break, it is important for clinicians to break down complex tasks into smaller, more attainable steps to facilitate feelings of self-efficacy (Driver, 2006) and control over his or her ability to make gains (Dzewaltowski, 1994; Jette, Rooks, Lachman, Lin, Levenson, Heislein, et al., 1998; Robison & Rogers; 1994). This concept also applies when encouraging PWA to participate for the first time in a book club. For example, many study participants needed modeling, gentle prompting, and encouragement from facilitators, caregivers, and other PWA to participate because of voiced self-doubt regarding their ability to successfully complete book club tasks. Following study completion, however, most participants indicated that they intended to continue to read. Additionally, all participants reported positive feedback about the book club itself and stated they would recommend book clubs specifically intended for PWA to others. These findings show that attempting to engage with reading materials and participating in book clubs became less daunting for PWA after casual exposures to the tasks and consistent support. Two reasons that potentially influenced this drastic change in attitudes for the PWA regarding book club participation and engagement include: the guided experimentation with personalizing one’s approach to accessing the novel via reading strategies and supports, in addition to the multiple sources of social-emotional support. Reading Supports and Strategies Participants in the current study utilized a variety of reading methods, supports, and strategies within the context of the book club (e.g. “reading ramps”, condensed aphasia-friendly summaries, audiobooks, text-to-speech technology, partner assistance, audio-visual viewing of the movie). More specifically, each participant was given the opportunity to independently create their own unique approach to reading with the guidance of the investigators. For example, some participants chose to read the text and then reference the chapter summaries whereas others bypassed reading entirely and accessed the text using alternative methods. Also, participants could select, modify, add, or remove supports as they saw fit for their individual needs. Some participants chose not to deviate from the originally selected reading strategies, while others altered their approach midway through the book club. This finding supports previous qualitative research indicating the importance of directly involving the PWA in decision-making regarding

24 strategy and support use (LPAA Project Group, 2001). Moreover, results from the present study reiterate preceding research that indicates PWA perceive benefit from various combinations of strategies and supports while reading longer length written text (Knollman-Porter et al., 2015; Lynch et al., 2013). Prior to book club discussions, all participants also obtained information from the novel via more than one source (e.g. read novel independently, listened via audiobook, read through summaries, reviewed chapter questions with spouse, watched the movie). Participants reported that the presentation of text content in multiple formats improved understanding, as well as provided a method to verify comprehension or identify previously overlooked aspects of the story. Although comprehension was not assessed, PWA indicated that the use of multiple supports made it “easier” to read and understand the novel. This outcome supports previous research that PWA prefer and demonstrate increased confidence with comprehension when information is presented through more than one modality (Brown et al., in press; Dietz, 2009; Knollman-Porter et al., 2015; Worrall et al., 2005). By providing multiple modalities to PWA while reading, the resulting increases in confidence can also facilitate more reading attempts and greater independence during reading endeavors. In order to determine the most appropriate and efficient strategies and supports that will meet the unique and personally relevant reading needs of each PWA, clinicians are encouraged to perform individualized assessments which actively involve the client. Utilization of direct interviews with clients and caregivers will provide important information on the specific reading needs and desires for the PWA. While the majority of participants in the current study reported a strong longing to read a novel, others were less interested in reading and voiced a greater desire to discuss the novel. Understanding the client’s personal interest with reading will in turn help clinicians be more efficient when determining appropriate structured and functional reading assessment tasks to determine the degree and extent of decoding or comprehension challenges exhibited. Once determined, the clinician and client can work collaboratively through direct trials with real reading materials to determine the best combination of methods, supports and strategies to facilitate efficient text comprehension. Social Engagement and Emotional Support Many PWA experience social isolation and decreases in social networks following their stroke (Dalemans et al., 2010; Elman & Bernstein-Ellis, 1999b, Hilari & Northcott, 2006;

Natterlund et al., 2010; Parr, 2007; Worrall et al., 2011). All participants in the present study, however, reported interacting with people, making new friends, and establishing supportive connections with other participants as benefits of the book club. Similarly, participants reported they felt comfortable contributing to discussions because group members were openly sharing achievements, hardships, and frustrations associated with day-to-day reading endeavors. In addition, group facilitators also offered personal examples of their struggles or confusion during reading to model the process of accepting and embracing imperfection. Through these discussions of adversity, participants mutually offered and received encouragement from other PWA. The supportive environment and open discussion of problems with reading allowed PWA to reflect and make strides towards acceptance of their reading ability and rationalize their fears related to attempting reading (Mumby & Whitworth, 2013). This adjusted perspective helped participants persevere through obstacles with reading and try new strategies and supports, thus leading to increased willingness to engage with reading tasks. Furthermore, the group environment of the book club may have furthered the success of individual participants because it held them accountable. The literature suggests that group dynamics and “team” environments in various fields encourage motivation and desire to perform on an individual level (Liu & McLeod, 2014). To more actively participate in book club discussions, participants had to seek understanding of the novel on their own time. Therefore, participants may have felt accountable to their peers to attend discussions, demonstrate their knowledge, and contribute to group conversations. Moreover, all participants described feeling comfortable in group discussions because other group members also had aphasia. Thus, taking risks in this environment was potentially less intimidating because they knew the other group members would be empathetic and be accepting of errors. As such, the group setting of the book club potentially influenced motivation to attempt reading, achieve comprehension, and strive to affiliate with peers in discussions (Kou & Stewart, 2018). Research supports the psychosocial benefits of traditional aphasia support group meetings (Elman & Bernstein-Ellis, 1999; Lanyon et al., 2013; Natterlund et al., 2010; Rotherham, Howe, & Tillard, 2015; Vickers, 2010). However, discussion of reading deficits may be overshadowed by other, more “pressing” topics related to living with aphasia. For example, many aphasia support groups focus discussions around health-related information about aphasia, the future of living with aphasia, or functional therapeutic activities targeting specific areas of communication

(Bernstein-Ellis et al., 1999; Natterlund et al., 2010; Rose et al., 2015). Thus, problems with reading may remain unnoticed and unspoken in most rehabilitation programs or support groups for PWA. As described by Kjellan and colleagues (2017), PWA often feel that their reading deficits prohibit them from meeting basic expectations and roles for adults in modern day society. Because of this perceived “failure” as an adult, PWA experienced feelings of frustration, isolation, shame, and disappointment (Kjellen et al., 2017). Through group socialization and discussion in the book club, participants in the present study realized other PWA were having difficulties reading, as well. They felt relief and reassurance when they discovered that they were not the only ones facing challenges with practical and pleasure reading every day. Consequently, the book club provided a valuable opportunity for participants to express difficulties, feelings, and reactions related to reduced reading ability and how that impacts them as adults. In addition, book clubs also offer a shared topic to discuss with other PWA that does not center around aphasia in a supportive environment in which they are given ample time to communicate. Participants engaged in conversations with other group members about adult- related topics independent of family member or caregiver assistance. Participants reported great value in group discussions regarding personal histories and experiences related to the characters and events in the story. This finding supports previous research indicating PWA desire participation in group settings in which their disability is not the focus of the interaction and a sense of normalization is encouraged (Rotherham et al., 2015). 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. Limitations/Future Directions The purpose of this study was to determine the perceptions of PWA regarding degree of helpfulness when utilizing comprehension strategies and supports in a functional reading task (e.g. reading a novel). However, we did not measure the degree to which supports directly influenced comprehension accuracy. Although participants indicated that various supports were more helpful than others, it is unknown as to whether these supports enhanced comprehension. Future studies should evaluate the degree to which these supports and strategies truly influence reading comprehension accuracy and efficiency within functional reading environments.

Another limitation of this study is that family members were not educated on ways to facilitate or support reading attempts during book club activities. According to participant report, some family members in the present study intuitively allowed participants to work through the process, while others attempted to take over with the intention of being helpful. These interactions led to frustration and feelings of dependence for the PWA. Inclusion and provision of services to all persons affected by aphasia, including caregivers, is necessary to increase environmental support and ensure continuous, successful participation in society (Brown et al., 2012; Howe et al., 2012; LPAA Project Group, 2001). Further research examining how family members can support greater success and independence for PWA during book club activities is warranted. Lastly, the book club in the present study was facilitated by a licensed speech-language pathologist (SLP) who has experience working with PWA for over 25 years and trained graduate students. Many studies have reported the positive benefits from SLP-led aphasia support groups (Legg et al., 2007; Morris & Morris, 2012; Shadden & Agan, 2004). However, clinicians may only be able to facilitate “coping” with the impacts of aphasia to a certain extent. Peers facing similar difficulties can offer a rare perspective to help other PWA further embrace life with aphasia (Code et al., 2013; Legg et al., 2007; Shadden & Agan, 2004). Peer-led groups have been executed for many years with support groups for other chronic conditions, such as cancer (Butow et al., 2007). With that being said, there is minimal research identifying the specific benefits of putting PWA in a position of leadership in these support groups (Tregea & Brown, 2013). Some researchers have begun the exploration of peer-led aphasia support groups and found that this format was positive and empowering in nature for PWA (Tregea & Brown, 2013). Future studies should evaluate the perceptions of PWA in peer-led vs. clinician-led book clubs for PWA. Conclusion People without a history of brain injury have been actively involved and found personal and social benefits from participating in book clubs for decades, however, this study provided empirical evidence that book clubs can be implemented successfully with PWA, as well. In general, book clubs specifically designed for PWA can yield improvements with reading engagement and socialization for individuals with a wide variety of reading abilities and interests. Following encouragement from facilitators, other PWA, and family members, in addition to exposure to new methods of accessing reading materials, PWA are able to positively

28 adjust perspectives towards reading and book clubs. PWA are using unique combinations of strategies and supports to access longer length reading materials in functional reading tasks. Continued investigation of the benefits and effects of family education and training with regards to cultivating independence with reading in functional environments is warranted to further improve overall well-being and quality of life for PWA. The present study emphasizes the apparent need to offer services to both the PWA and their families that surpass current methodologies for managing aphasia in the chronic stages and solidify more suitable avenues for PWA to fully and actively engage as adults in modern day society.

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Appendix A. Weekly Participant Reading Survey

NAME______

Participant ID#______Date ______Book Club Week #______

1. What did you use to read the book this week? Circle all that apply. a. Book b. Large print book c. iPad d. iPad with text to speech e. Audio book f. Movie g. Weekly summaries h. Spouse

2. How difficult was it to complete the reading using ______method?

No difficulty Mild difficulty Moderate difficulty Very difficult Unable to complete

3. How much were you able to read?

0% 25% 50% 75% 100% %

4. How long did it take you to read this week?

One day A few days One week One month Did not finish

5. Was there too much to read? a. Yes, it was WAY too much b. It was a little too much c. It was just the right amount d. Not enough to read

Appendix B. Sample Questions for Post-Book Club Interview

Sample Interview Questions

General Info - Pre-Book Club • Why did you decide to join the book club? • How did you feel before the first meeting? • Would you have attempted reading this book on your own?

Reading • What kinds of reading supports did you use? Which did you like/not like? • How did reading support influence your understanding of the text? • Did your use of reading supports change? • Do you feel more or less confident with your reading? Explain. • Will you continue to read? Explain.

Communication • Did you feel comfortable talking during group discussions? Why or why not? • Did your willingness to participate change as the sessions progressed? • What did you enjoy talking about with the group? The book? Life experiences?

Support • What was your experience talking with people with similar reading impairments? • What benefits did you gain from the other members of the group? • Did you get encouragement from people in the book club? Outside of the book club? • Would you have continued to read the book without the support of the group?

Ending Questions • Would you be willing to participate in this type of group again? Why? • Was the experience what you expected? How did participating in the group make you feel? • What are your thoughts on book club overall for people with aphasia?