Aphasiology

ISSN: (Print) (Online) Journal homepage: www.tandfonline.com/journals/paph20

“I Wasn’t Just Sitting There”: Empowering Care

Partners through the Aphasia-Friendly Reading
Approach

Erin L. O’Bryan, Harold R. Regier & Katie A. Strong

To cite this article: Erin L. O’Bryan, Harold R. Regier & Katie A. Strong (31 Oct 2023): “I Wasn’t
Just Sitting There”: Empowering Care Partners through the Aphasia-Friendly Reading Approach,
Aphasiology, DOI: 10.1080/02687038.2023.2272956

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APHASIOLOGY
https://doi.org/10.1080/02687038.2023.2272956

“I Wasn’t Just Sitting There”: Empowering Care Partners

through the Aphasia-Friendly Reading Approach
1
Erin L. O’Bryan , Harold R. Regier2 and Katie A. Strong 3

1
Department of Communication Sciences and Disorders, Wichita State University, Wichita, KS, USA;
2
Independent Scholar; 3Department of Communication Sciences and Disorders, Central Michigan University,
Mount Pleasant, MI, USA

ABSTRACT ARTICLE HISTORY

Background: Sharing stories is a way that people make meaning Received 20 Apr 2023
out of life and connect with others socially. For couples in which Revised 08 Oct 2023
one person has aphasia, the ability to have conversations and share Accepted 13 Oct 2023
stories may be disrupted. Many people with aphasia benefit from KEYWORDS
support in constructing and sharing stories with others. To share care partners; narrative;
experiences with his wife, the spouse of a person with aphasia script training; oral reading;
developed an intervention approach called Aphasia-Friendly aphasia
Reading that supports oral storytelling and sharing stories with
others.
Aim: The current study explored the experiences of care partners in
a pilot study using the Aphasia-Friendly Reading approach.
Methods & Procedures: Three people with aphasia and their care
partners participated in the Aphasia-Friendly Reading pilot study
one hour per week for 9 to 14 weeks. Following the pilot program,
each care partner was interviewed about their experience partici­
pating in the study. Interview data was analysed using reflexive
thematic analysis.
Outcome & Results: Three major themes were identified: (1) Care
partner empowerment, (2) Collaboration, and (3) Different ther­
apy experience. Care partners expressed that they were “totally
involved” in all stages of the intervention and that they highly
valued being involved. Further, care partners reported specific
ways that they started taking initiative in supporting their part­
ner with aphasia outside of the sessions. Care partners described
the project as collaborative, noting the role of all participants in
story co-construction and mentioning how they both taught and
learned from graduate student clinicians. The care partners
reported that the project was distinctly different from their pre­
vious therapy experiences, noting that they appreciated the
person-centeredness of the stories, the fun of working together
in sessions, and the opportunity to share their stories with the
aphasia group.
Conclusion: The results indicated that the care partners experi­
enced benefits of being actively included in the Aphasia-Friendly
Reading approach. The approach appears to be harmonious with
core values of the Life Participation Approach to Aphasia and
research on the value of considering aphasia to be a family issue
rather than an individual issue.

CONTACT Erin L. O’Bryan erin.obryan@wichita.edu Wichita State University, Department of Communication

Sciences and Disorders, 1845 Fairmount Street, Box 75, Wichita, KS 67260-0075, USA
Supplemental data for this article can be accessed online at https://doi.org/10.1080/02687038.2023.2272956.
© 2023 Informa UK Limited, trading as Taylor & Francis Group
2 E. L. O’BRYAN ET AL.

One of the greatest challenges of aphasia is that it can make it difficult for a person with
aphasia to communicate and connect with significant others and family members. In fact,
aphasia has long been described as a family illness (Buck, 1963). For couples in which one
person has aphasia, decreases in the frequency and duration of communication as well as
changes in feelings about conversations have been documented (Croteau et al., 2020). For
a person with aphasia, having a conversation with a loved one can be frustrating,
exhausting, and in some cases impossible. The purpose of the current paper is to share
a communication approach developed by the spouse of a person with non-fluent aphasia
and piloted by speech-language pathology clinical researchers. Harold Regier developed
the Aphasia-Friendly Reading approach so that he and his wife, Rosella, could enjoy
reading stories together aloud about topics of mutual interest (Regier, 2021).

The Importance of Storytelling

Storytelling is an integral part of who we are as humans. Stories influence how we view
ourselves, or identity, and provide connection with others in social situations (Strong &
Shadden, 2020). Stories provide a way to make meaning out of events (Neimeyer, 2001).
We use stories to share important experiences, activities we have been doing, and other
happenings in our lives. Storytelling requires an audience because stories are socially co-
constructed, meaning that both the listener and the storyteller play a part in how the story
is conveyed and how and if that story will be shared again (Randall et al., 2006). An
essential tool for sharing stories is language. Having aphasia places people at
a disadvantage for sharing stories in that the integral tool for story–language, has been
damaged (Shadden, 2005). People with aphasia may benefit from support in co-
constructing stories to share with others (Strong & Shadden, 2020).

Origins of Aphasia-Friendly Reading: In Harold’s Own Words

Telling the story of how the Aphasia-Friendly Reading approach was developed and our
connection to the approach is important in setting the stage for this study. Here, Harold
tells how he developed the approach in his own words.
How did I discover an “Aphasia-Friendly” reading technique? Over the years struggling
with the realities of aphasia’s “loss of language,” it sort of “evolved.” I wasn’t on a journey
to find a technique for oral reading. I just tried to be attentive to any possibilities to
enhance our communication and thus our quality of life as Rosella and I adjusted to the
challenges of life with aphasia.
Reflecting back, I can identify key observations and eventually experimentation with an
oral reading technique that I hoped would help enable Rosella, a pre-aphasia storyteller,
to become a post-aphasia storyteller. Here is an attempt to reconstruct the story of how it
evolved.
Rosella’s stroke was devastating. For an entire year she was in survival mode. Forty-five
days in the hospital. Twenty-four days in inpatient rehab. Two hundred eighteen days in
a nursing care facility. Finally after a full year regaining a measure of stability, she came
home. And we began the rest of our thirteen-year journey with aphasia together. Many
ups and downs. Constant speech therapy. Even with all of the rehabilitation and efforts to
change, Rosella’s aphasia persisted.
 APHASIOLOGY 3

During this period, Rosella expressed herself through paintings which she captioned,
but her ability to communicate verbally was limited. See the Supplemental Materials for
two of her paintings with captions. Our struggle to understand each other with intelligible
conversation was our most formidable and frustrating hurdle. My wish, my passion, was
that somehow our quality of life would be further maximised by improved speech and
understanding. So speech therapy was a high priority for us. And in the process, we
looked for any possible way to better communicate with each other.

A First Hint: Liturgical Responsive Reading

A first hint for a communication technique was an observation during a liturgical reading in
church. The reading was streamed to a screen. The leader read a first line; the congregation
responded by reading the second line. I usually did not pay attention to Rosella’s response
to these readings, but on one occasion I saw that Rosella’s lips were moving and that she
was reading the line with the congregation. Maybe it was only the first three or four words of
the line, but those words seemed to come out clearly. And a light went on for me.
I put together simple readings adapted from the Psalms, by putting lines into short
three or four word “sentences.” I printed these out with a larger font, double-spaced,
indenting every other line, and identifying each line with an H (for Harold) and an R (for
Rosella). Outside of the church service, we did readings from the Psalms. With me always
reading the first line, I modelled reading every word, distinct enunciation, and a rhythm
suitable for oral reading.

Moving to Stories
I began to wonder if this reading style could be used to create and write stories. Writing stories
using only short sentences was challenging. At first it sounded choppy, and it was hard to
make a story flow. I considered every line to be a sentence, even some one-word “sentences.”
A period to mark every line as a sentence made changing readers at that point a reasonable
co-reading assumption. Those occasional one-word “sentences” seemed a welcome break for
the aphasia reader. I tried to gear my story writing for successful, fun reading.
I began to call these reading exercises “Aphasia-Friendly Reading.” Eight years after
Rosella’s stroke, we had our first audience for our new-found technique. Our audience was
small children during a special time in our Sunday morning service. In the background
was that larger audience, the congregation. We read a story about what it’s like to live
with aphasia. Rosella had a lifetime career and passion as a children’s educator. I sensed
she thoroughly enjoyed telling this story. The attentive children and applauding con­
gregation were indeed encouraging affirmation for her. And so my passion to proceed
with further exploration of storytelling with Rosella was heightened!

Nuts and Bolts of the Aphasia-Friendly Reading Approach

I follow three basic guidelines for writing aphasia-friendly stories.

(1) Co-reading: The reader without aphasia reads every other line, starting with the first
line. The person with aphasia reads every other line, starting with the second line.
4 E. L. O’BRYAN ET AL.

Figure 1. Excerpt from an Aphasia-Friendly Reading Story

The co-reader mentors how the reader with aphasia needs to read every word. With
the co-reader reading every other line, that principle is constantly reinforced.
(2) Formatting: I double-space, indent the second line, and change reader identity with
A and B rather than the reader’s initial. I select font size and style to make it easy to
read for the person with aphasia.
(3) Sentence length: I try to limit sentences to three to five words. Longer sentences
resulted in less accurate reading.
An excerpt from one of our stories, “We Ain’t Got No Christmas,” is shown in Figure 1.

Waffle Night: An Authentic Audience Matters

To support Rosella’s connection with our friends and family, I began a tradition of inviting
a small group of friends to become our story-telling audience. We called these Friday
evenings “waffle nights.”
I explained in my invitation that we would have a simple waffle supper. There we
would visit informally, including Rosella in the conversation where possible. The guests
were friends most of whom we had known for many years. So we could recall mutual
memories. It was always a pleasure to hear Rosella’s frequent expression, “I remember
exactly.” Finding words for what she remembered did not happen. But she could affirm
remembering! Rosella attempted to participate in the chatter, and we all listened intently,
often not able to find her story in her words.
After the waffles, we went to our theatre. There in the living room, I streamed the slide
show of aphasia-friendly texts, and Rosella and I would read the stories. Guests were
fascinated at how our table conversation was now transformed into intelligible storytelling
conversation. I sometimes showed slides of Rosella’s paintings to add to her story-telling skill.
And we had another hour of delightful “conversation” that included Rosella as
a “conversationalist” in spite of her aphasia. These evenings became the highlight of our week.
 APHASIOLOGY 5

In the following months, we continued to adapt, add stories, and improve our planning
for these evenings. In all, we hosted thirty waffle nights. I cherish those evenings as a kind
of climax to our journey of discovering a communication technique that provided a sense
of satisfaction and joy in reclaiming some of our “loss of language.”
Our final “waffle night” event was three evenings before Rosella’s death. There was so
much more we wished to do in our journey exploring additional pathways for meaningful
communication. But Rosella’s declining health brought our journey together to an abrupt
ending. I cherish all the opportunities we had to discover and travel the road of discovery
that led us to the joy of storytelling.

Connecting Aphasia-Friendly Reading to Evidence-Based Approaches

As the first author learned more from Harold about Aphasia-Friendly Reading, it became
apparent that elements of the approach were supported by evidence within the aphasia
literature. Frameworks and treatment approaches that seemed to relate to Aphasia-
Friendly Reading included the Life Participation Approach to Aphasia (LPAA; Chapey
et al., 2000), the Living with Aphasia: Framework for Outcome Measurement (A-FROM;
Kagan et al., 2008), script training (Goldberg et al., 2012, Kaye & Cherney, 2016; Youmans
et al., 2005), Oral Reading for Language in Aphasia (ORLA; Cherney, 2010), Aphasia
Couples Therapy (ACT; Boles, 2015), and the My Story Project (Strong et al., 2018).
The Aphasia-Friendly Reading approach relates to the core values of the LPAA (Chapey
et al., 2000) and all aspects of the A-FROM (Kagan et al., 2008). It relates to participation in
life situations (LPAA Core Value 1) in that it provides support for the person with aphasia
and care partner to spend quality time together communicating about memories and
mutual interests and sharing stories with others. It relates to the language environment in
that it involves people in the person with aphasia’s life such as the care partner, other
family members, and friends (LPAA Core Value 2). Aphasia-Friendly Reading relates to the
language impairment of aphasia in that it provides support for oral production of stories,
and success can be measured and documented through story sharing events (LPAA Core
Value 3). Aphasia-Friendly Reading targets both personal and environmental factors
(LPAA Core Value 4) in that it focuses on person-centred storytelling about life experi­
ences and interests.
Aphasia-Friendly Reading shares features of script training, an intervention that
involves people with aphasia learning personally significant monologues or dialogues.
Multiple studies support the efficacy of script training for learning to communicate the
target message and improving aspects of verbal production (Goldberg et al., 2012; Kaye &
Cherney, 2016; Youmans et al., 2005). Aphasia-Friendly Reading involves constructing
a person-centred script for both the care partner and person with aphasia.
Aphasia-Friendly Reading also shares similarities with ORLA (Cherney, 2010),
a treatment approach that targets oral reading and generalizes to improved
language performance. ORLA involves reading in unison with the clinician who
fades cues until the person with aphasia is independent in reading a passage. One
variant of ORLA, referred to as Repeated Choral Reading (Cherney et al., 2005)
particularly resembles Aphasia-Friendly Reading. Repeated Choral Reading is fea­
tured in the clinical online learning program Simucase (2019) in which the clinical
simulation case Dan showcases a person with aphasia reading aloud in unison with
6 E. L. O’BRYAN ET AL.

his wife. Aphasia-Friendly Reading differs from Repeated Choral Reading in that
Harold and Rosella alternated reading lines rather than reading in unison.
Aphasia-Friendly Reading and ACT (Boles, 2015) both include involving the care
partner. ACT aimed to address the conversational imbalance in couples where one person
has aphasia. In Aphasia-Friendly Reading, this balance happens naturally since the couple
takes turns reading lines. The approaches differ in that ACT involves the couple commu­
nicating with each other spontaneously, in contrast with Aphasia-Friendly Reading which
involves scripted turn-taking.
Aphasia-Friendly Reading also shares elements with the My Story Project (Strong et al.,
2018). Both approaches involve co-constructed person-centred narratives that are shared
with an invited audience of friends and family. Aphasia-Friendly Reading differs from the
My Story Project in that the care partner reads every other line.

Research Aim
As the first author learned about Aphasia-Friendly Reading, Harold asked her, “Would
this activity be helpful to other people with aphasia and their family members?” The
first author decided to investigate this question. With Harold’s permission, she and
her team of graduate student clinicians piloted the Aphasia-Friendly Reading
approach with three other people with aphasia and their care partners. The current
study did not examine language performance or other measures related to the
participants with aphasia. Instead, the current study explored the experience of the
three care partners.

Materials and Methods

Participants
The participants were three adults who were care partners of people with aphasia
who were currently participating in the Aphasia-Friendly Reading project. Participants
were recruited using a flyer presented and explained in person in two university
aphasia groups. Due to this recruitment method, all participants were care partners
of current members of the same university aphasia group. Participants agreed to
engage in a weekly one-hour therapy session with their partner with aphasia as well
as to practise reading aloud together at least five days per week outside clinic
sessions.
Demographic information about the couples is shown in Table 1. Each spouse and
participant with aphasia selected their own pseudonym for anonymity. All care partners
were married to and co-residing with the person with aphasia, but this was not
a requirement for participation. Each of the three couples participated separately. All
sessions were individualised for each couple together except for the final session in which
the couples read their stories aloud to the aphasia group. All recruited participants
completed the study.
 APHASIOLOGY 7

Table 1. Demographics of the Care Partners and Participants with Aphasia

Care Partner Dan Dave Leah
Age of care partner 79 70 70
Person with Aphasia (PWA) Kay Cora Mack
Age of PWA 80 70 68
Relationship married 51 years married 33 years married 35 years
PWA WAB-Ra AQ 55.40 45.10 23.31
PWA WAB-R type Broca’s Broca’s Broca’s
PWA WAB-R severity moderate severe very severe
Time post onset at start of study 2 years 3 months 5 years 8 months 4 years 10 months
a
Western Aphasia Battery-Revised (WAB-R; Kertesz, 2007).

Modifications to the Aphasia-Friendly Reading Approach for Clinical Application

The Aphasia-Friendly Reading project was based on the approach described by
Harold (Regier, 2021), as summarised in the introduction of this paper, with
modifications.

Modification 1 – Story Development

In Harold’s version, he wrote the stories himself, in the role of care partner, co-
reader, and creator of the approach. In the current study, story development
involved the care partner, the person with aphasia, two graduate student clinicians,
and the SLP, who is the first author of this paper. This modification made the
process more LPAA-centred by including the person with aphasia as an integral
part of story co-construction.

Modification 2 – Cueing
Harold specified that he did not correct or cue Rosella. Instead, he increased her success
by keeping lines simple and short. In the current study, the participants requested cueing
and feedback during practice with clinicians before reading aloud in front of others, most
likely due to the participants’ aphasia severity and impaired oral reading ability.

Modification 3 – Practice and Sharing

Harold wrote seventy-three stories to read with Rosella, and they read each story together
only one or two times as a quality time activity and then later shared the story with an
authentic audience. Although Rosella had a limited ability to produce novel sentences
orally, her oral reading ability was a relative strength. In contrast, in the current study, oral
reading ability was not a relative strength of the people with aphasia. Therefore the
couples requested to practise reading each story many times, because they did not feel
ready to share their story with an audience. They expressed wanting to feel more
confident that the audience would understand their story.

Aphasia-Friendly Reading Treatment Process

The project involved three phases: story development, oral story reading practice, and
sharing the story aloud with an authentic audience. Care partners were involved in all
phases. Sessions occurred once per week for approximately one hour in a well-lit, quiet
8 E. L. O’BRYAN ET AL.

Table 2. Number of Sessions by Treatment Phase and Participant

Number of Sessions Dan and Kay Dave and Cora Leah and Mack
Story Development 2 2 2
Reading Practice 6 8 11
Aphasia Group Sharing 1 1 1

room in the university speech-language-hearing clinic. Table 2 shows the number of

sessions for each couple.
During story development, each couple was asked to bring ideas and photo­
graphs related to a story that they would like to tell. During this phase, the
graduate student clinicians asked questions, listened, asked follow-up questions,
and took notes. The couple and the clinicians then collaboratively constructed the
story. An important component of this process was encouraging the person with
aphasia to express opinions about lines of the story, and lines were edited until
the person with aphasia approved the content and wording. Story development
took two sessions. Each couple’s stories are provided in the Supplemental
Materials.
Reading practice sessions focused on improving the ability to share the story
orally together and advising the couple about cueing and home practice techni­
ques. The clinicians and SLP were deliberate in recommending that the care
partner should not interrupt or criticise the person with aphasia but rather could
provide models and cues if the person with aphasia requested help. Examples of
cues that were provided and taught included models, unison production with
fading, phonemic cues, visual cues, written cues, and syllable segmentation.
During this phase, the person with aphasia and care partner read the story
together, alternating lines in the responsive reading format. The graduate student
clinicians provided cues and support upon request. During each session, the
couple read the story three times with additional practice on difficult lines. The
number of reading practice sessions was individualised based on the needs of the
couple to successfully share the story. The graduate student clinicians reminded
the couple to practise together at home five days per week and to keep a written
log of home practice. For home practice, the couples were instructed to read the
story aloud together two or three times and to make note of any difficult parts or
strategies that helped.
The final phase of the project involved the couples sharing their stories with the
aphasia group of which they were members. In all three cases, this sharing occurred
after the couple expressed confidence in telling the story aloud so that it could be
understood by others. The story was projected on a screen as the couple read aloud to
the group. The audience consisted of fifteen familiar people including five other people
with aphasia, three other care partners, five graduate student clinicians, the SLP, and the
aphasia group coordinator.

Study Design
A phenomenological qualitative research design was used to explore the experience of
care partners who participated in the Aphasia-Friendly Reading project. The first
 APHASIOLOGY 9

author conducted semi-structured interviews with each of the three care partners. The
process allowed for follow up questions to gain insight into participants’ perspectives.
The first and third authors analysed the interview transcripts using reflexive thematic
analysis (Braun & Clarke, 2022). This process involved coding and finding shared
meanings in the interview data. The Institutional Review Board at the first author’s
university approved the project (IRB #4820).

Data Collection
After the couples completed the project, the first author obtained consent and conducted
one semi-structured interview with each of the care partners in individual sessions.
Interviews ranged in length from 30-45 minutes. The Appendix provides the interview
guide, developed following guidelines by King et al. (2019). Interviews were video
recorded, transcribed, de-identified, and checked by a trained undergraduate research
assistant and reviewed for accuracy by the first author and a second undergraduate
research assistant.

Data Analysis
Braun and Clarke’s (2022) method of reflexive thematic analysis was used to analyse the
data. Data analysis was conducted by the first and third author.

(1) Phase 1, Familiarisation: Authors read the interview transcripts multiple times
separately, annotated them with initial impressions, and then discussed the anno­
tated transcripts.
(2) Phase 2, Coding: Data were coded initially by the first author using Microsoft Excel.
Both authors involved in the analysis then discussed the annotations and coding
and developed code labels for significant meanings found in the data.
(3) Phase 3, Generating initial themes: The authors next developed initial themes
based on shared meanings identified in the code labels. The core themes and
subthemes were then organised into a thematic map to capture relationships
between the meanings.
(4) Phase 4, Developing and revising themes: The authors reviewed and revised
themes and subthemes to ensure that there was adequate evidence for each,
that extractions were interpreted accurately, and that all themes and subthemes
were coherent and important.
(5) Phase 5, Refining, defining, and naming themes: Themes and subthemes were
reviewed and refined to ensure they were not overlapping, and finalised names
of the themes and subthemes were determined.
(6) Phase 6, Writing the analysis with supporting data extracts: The first author wrote
the description of each theme and subtheme with example data extracts.

Reflexivity and Rigour

The authors acknowledge multiple factors that shaped the lens used in the reflexive
thematic analysis presented here. First, the couples in this study know each other and the
10 E. L. O’BRYAN ET AL.

first and second authors through their aphasia group community. Two of the three
couples knew that the second author and his wife pioneered the Aphasia-Friendly
Reading approach. The first and third authors are licensed and certified SLPs who teach,
supervise graduate student clinicians, interact frequently with people with aphasia, and
embrace the LPAA.
The Standards for Reporting Qualitative Research (O’Brien et al., 2014) was used to
improve the reporting of this study. Rigour was ensured through peer debriefing, discus­
sions acknowledging reflexivity, an audit trail, and checking of data extracts. Peer debrief­
ing with the research team occurred before and after each interview and throughout the
analysis process. Reflexivity was acknowledged through discussions and documentation
of personal reflections shared with the research team. The audit trail involved the storage
of meeting notes, multiple drafts of annotated transcripts, and notes on themes and
subthemes.

Results
Three themes were identified through the analysis: Care partner empowerment,
Collaboration, and Different therapy experience. Themes and subthemes are dis­
played in Figure 2. All participants are reflected in each theme and subtheme
unless otherwise noted.

Theme 1: Care Partner Empowerment

Care partners were empowered by the Aphasia-Friendly Reading therapy process.
This empowerment was exemplified by the following quote from Dave: “I’ve noticed
a difference in her, not that she didn’t before want to read, but now she knows she

Figure 2. Themes and Subthemes Identified in Care Partner Interviews

 APHASIOLOGY 11

can do it, and she can say sentences. So for me to be able to participate in that was
a blessing to me, because I felt like I was helpful. I wasn’t just sitting there.” Each
care partner contrasted this empowerment with other prior therapy experiences in
which they had been told to sit in the waiting room, wait in the car during COVID-
19, sit in an observation room, or sit in the therapy room with the instruction to
remain quiet. Evidence of this empowerment was identified in three subthemes: It’s
our aphasia, I was included, and I learned how to support my partner’s
communication.

Subtheme 1a: It’s our aphasia

The care partners talked about “our aphasia” rather than “his aphasia” or “her aphasia.”
This subtheme exemplifies that aphasia does not just affect the person who has it. For
example, Dave used the pronoun “we” in his comment: “I mean, we got aphasia twenty-
four seven at our house.” Dan also used the pronoun “we” to talk about progress with
aphasia: “We’re improving, we’re improving.” Leah explained that her husband’s progress
is also important for her: “You’re making your life twice as hard if you don’t have them be
the best they can be.” Dave further added to this subtheme, saying “She knows that by
trying to say sentences, it’s helping her, and it’s also helping us, so she does.” This
subtheme showcases the solidarity of each couple in living with aphasia. Learning to
communicate and live with aphasia is a shared endeavour.

Subtheme 1b: I was included

Each care partner indicated they appreciated being actively included in the therapy. This
subtheme was exemplified by Leah’s quote: “In this, I was totally involved and we– I like it.
I like to be involved in what he is doing. That is the only way I can know what he is doing.”
Further, Leah reported that her husband also seemed to enjoy her involvement: “I like to
be a part of what he’s doing. It makes him feel good, I think.” In this therapy project, the
care partners were not just bystanders. Rather, they had an essential role. Dave touched
upon the effect of having the care partner read every other line, saying “I thought it was
good because we were both participating. I think Cora liked that aspect too. Also, I think
me reading a sentence and then her reading the next, she was able to get into the whole
rhythm of the story and . . . I felt like I was also really helping her along too, and I enjoyed
it.” Leah also remarked on the value of reading alternating lines: “It was a good way to get
him to know what to say because it was, I say this then you say that, every time, every
time, so it was a good way for him to know what to say.” Care partners shared about how
practising together during the therapy session improved their home practice sessions.
Leah’s statement captures the importance of being actively included in the therapy, “It
was good that he saw that I was trying to listen to what I was supposed to do . . . he
worked with me real good at home because he could remember what they were doing.
He liked that.”

Subtheme 1c: I learned how to support my partner’s communication

All three spouses indicated that an important goal of therapy was to support their
partner’s communication with friends and family in social situations. For example, Dan
stated that he wanted to participate in the Aphasia-Friendly Reading project to help his
12 E. L. O’BRYAN ET AL.

wife “improve and socialise more.” Leah said that she wanted to participate in the project
to “help Mack overall talk more and feel more confident while he’s doing it.”
Dave and Leah remarked on the skills they learned in the therapy sessions for
supporting their partner’s communication and language. This subtheme was exem­
plified by a quote from Dave about learning to help his partner communicate
spontaneous messages on the fly: “She had a sentence she wanted to say verb­
ally–it wasn’t written down and I would help her by trying to figure out what she
was trying to say, and she’d say the sentence, and then we’d work on the sentence.
So we didn’t do that before, but we have since then.” To highlight how much he has
learned about therapy, he joked, “This is my sixth year of speech therapy, and I’m
working on my master’s degree in it too, so I have learned so much about aphasia
and what works and what doesn’t work.” Leah showed that she also learned how to
support her partner’s communication: “So I say ‘let me read with you’, and I read it
with him, but I try not to talk, a little,” showing that she has discovered a strategy
that helps her partner read the story successfully. Dave demonstrated that he
learned another helpful strategy: “I would prompt her at the start of a sentence to
get her going. Once I did that, she’s able to say that sentence, and I do the next
sentence the same way.” The experience of participating in this project afforded
these care partners opportunities to expand their skills in supporting their partners’
communication.

Theme 2: Collaboration
The second theme was collaboration. This theme was exemplified by the following quote
from Dan: “It was a good process. I really was surprised how you [clinicians] figured out
different stories out of all the things we [shared]. You know we went through so much . . .
what you did was brilliant, came out great.” The project was inherently collaborative,
requiring participation and contributions from the person with aphasia, care partner, and
graduate student clinicians. This collaboration was evident in story co-construction,
modelling of therapy strategies, and care partners teaching clinicians.

Subtheme 2a: Co-constructing stories

The care partners talked about the value of co-constructing the person-centred stories.
Leah communicated the importance of co-construction in that she didn’t know how to
write the stories: “I didn’t know how to make a story with just a few words . . . You
guys [clinicians] helped me a lot. I couldn’t have written it without you.” Dave took
a larger role in story co-construction. After seeing Harold and Rosella’s examples and
participating in the initial story development interview, he took into account Cora’s
favourite memories and wrote the initial draft. Dave said, “I remember you telling me
that it needed kind of a story line so I . . . tried to find good memories because I think
they’re easier to remember than bad memories . . . so I thought about our cruises that
Cora and I had taken, and I developed from what you had explained to me some short
sentences, and so I wrote out a story for it. I tried to incorporate the same various
words that she’d be saying over and over again. I thought maybe that would help her
a little bit.” In the next session, Cora attempted to read the story that Dave had
created and gave him feedback about which lines were too difficult. The graduate
 APHASIOLOGY 13

student clinicians helped edit the lines to make reading them aloud more accessible
for Cora. Dave described this, saying, “Then we sat down and we went through it.
I realised that some of the sentences were just a little bit out of her range. So
I adjusted those with your help and the student’s . . . With her help, we kind of
redid the story a little bit, didn’t change it [the content], but just changed the
words and the sentences.”

Subtheme 2b: Therapy strategies were modelled and practised

This subtheme identified the value of therapy strategies being modelled and having
opportunities to practise during the session in addition to practising at home. During
the interview, Dan revealed that at the beginning of the project, he did not know how to
support his wife when she made mistakes. He stated, “I didn’t know when to interrupt if
she made a mistake, whether I should interrupt her or not, or let her go ahead and then go
back.” Through the therapy sessions, Dan learned to be supportive without interrupting
or giving unsolicited corrections and how to acknowledge his partner’s competence. He
said, “I was watching how they [the graduate student clinicians] did it and I tried to pick up
on that, but yeah, I learned a lot.” Leah highlighted the importance of modelling and
practice in her statement: “Yeah, like pausing and letting him start over . . . it was good
that he saw that I was trying to listen to what I was supposed to do.” Dave remarked about
learning from the clinicians to modify his speaking rate: “They kind of reinforced to me
that you gotta go at Cora’s pace. And that was one thing that they did, they didn’t come
out and say, but I saw them doing it, and I realised, ah I talk fast sometimes, and I’ve gotta
slow my pace down to go with hers.”

Subtheme 2c: Care partners teaching clinicians

This subtheme centred around the care partners teaching clinicians and was evident in
Dave and Leah’s interviews. For example, Dave specifically mentioned that the graduate
student clinicians learned some things from him: “Sometimes I know when the clinician is
helping Cora, they’re trying to do something that I found out on my own doesn’t really
work with her, so I will interject myself, try and be nice about it, because they’re just trying
to figure out what’s going on.” Leah shared how she felt that she has a lot to teach the
graduate student clinicians about what makes a good therapist and how important the
speech therapist’s job is in the life of someone with aphasia: “I have six years of being with
speech pathologists, and I can tell you which ones are really good and which ones just sit
there and are just okay.” She went on to say, “They come in sometimes and say, this is
what we’re supposed to do with Mack for 45 minutes. Mack, say those words. No, that isn’t
getting it! . . . If you’re just being a speech person because . . . later I can fit it into my
schedule–no! That’s not it! I mean you got to get to know the person and care about ‘em,
because they’re trying their hardest, or Mack is, and all of the adults are.” She added, “The
program that they [the students] are in–I would be passionate about it, because you’re
helping somebody be able to communicate in the world and they can’t do it.”

Theme 3: Different Therapy Experience

All three care partners expressed that this project was different than their other therapy
experiences. For example, Dan said: “They [other SLPs] didn’t do anything like what we’re
14 E. L. O’BRYAN ET AL.

doing here.” Leah noted the difference stating, “It was something special.” Care partners
talked about how this therapy experience was different in that it was person-centred and
fun and involved sharing with others.

Subtheme 3a: The stories were about us

The first way in which the care partners indicated that this project was different was the
person-centeredness of the stories. This subtheme, the stories were about us, is exemplified by
Dave’s quote, “The specific story . . . it was on a cruise and basically the things that we saw, that
we did, that we experienced.” Dan highlighted that the stories were about the activities of
their lives, “I like the way they started out when she was little and growing up on the farm . . .
and then we went to what her adult life was like, and that’s what it was . . . when she wasn’t at
the YMCA, she was playing golf other times . . . I thought it was great, the development of the
stories.” Leah shared how the person-centred nature of the story helped her husband engage
in the project: “Since we used that subject of the band, it was something he wanted to be in,
he wanted to say, so he could remember it, and it made him feel good.” Dave captured the
positive effect of having the story focus on their shared experiences: “It was just kind of a good
feeling. The story was about experiences that we had together.”

Subtheme 3b: We had fun!

This subtheme was that the care partners found the therapy project fun. Leah’s quote
highlights how sharing their story relived the fun of the event: “It was a true life thing that
he remembered and I remembered, both of us together, because I lived through it too,
and we had so much fun while it was going on, so it just relived the fun.” Dan said, “I really
enjoyed this [project] more than any of the other ones we’ve had.” Dave shared how
much it meant that therapy was fun: “When we’re in a session . . ., when it’s fun and there’s
laughter that goes along with it, it is so much easier for Cora to learn.”

Subtheme 3c: Sharing with others

The third subtheme was that the therapy project was different because it involved sharing
their reading of the story with others. The reaction of the audience provided validation for
their partners’ ability to share their stories. Each care partner remarked on the surprised
reactions of the audience when their story was shared with the aphasia group members,
including the group moderator and graduate student clinicians. The following quote from
Dave exemplified this subtheme: “I don’t know if Cora noticed it. I think maybe she did,
but I mean [the aphasia group moderator’s] jaw dropped. Some of the clinicians in there
were like: this is the same lady we’ve been working with and she’s reading this whole
story?!” Leah described their reading in front of the aphasia group saying, “When we read
it to the room, they were all very attentive, and so I think that they were feeling the same,
how good he was doing because they all seen Mack in the beginning, and he has come
a long way since the beginning.” Dan reported that they were successful in sharing their
story, saying “I think she was a little antsy, but I thought she did great, and probably
sometimes better than she did in here [in the session] . . . I thought we did great.”
Dave noted how sharing their story appeared to inspire other group members with
aphasia to want to share their stories too: “And what really made me feel good was some
of the people with aphasia in there, you could see the twinkle in their eyes and the smiles
 APHASIOLOGY 15

on their faces like wow . . . and every one of the aphasia people in there was like ‘yeah,
I want to learn how to do that.’”
Additionally, all three care partners reported they continued to share their story after
the project ended. Dan reported “We read these for my sisters a couple times or one time,
and then [a friend]–we read it for her one time.” Similarly, Dave reported “When we went
to our vacation house, my mom, my sister, my brother-in-law, my niece came. We read the
story to them, and we had another little story too.” In fact, Dave and Cora continued to
develop more stories on their own that they shared with family members. Leah reported
that practising their story helped her husband participate in a conversation about the
topic of the story [their rock band]. Leah said, “we just went to a funeral of one of the band
members. After the funeral we all got together and sat at a table . . . we had discussions
about the band, and we were all laughing around the table.”

Discussion
This article explored the experiences of care partners of people with aphasia after
participating in a pilot study of a novel storytelling approach. The Aphasia-Friendly
Reading approach developed by Regier (2021), the spouse of a person with aphasia,
provided a framework to use in supporting people with aphasia and their care partners in
co-constructing and sharing stories that were important to their lives. Three themes
identified in the care partner interviews, Care partner empowerment, Collaboration, and
Different therapy experience, provided an opportunity to understand the impact of being
engaged in a meaningful way in therapy as a care partner.

Including Care Partners in Intervention in Meaningful Ways

Care partners have expressed goals of being included in rehabilitation and being able to
communicate and maintain their relationship with the person with aphasia (Howe et. al.,
2012). However, SLPs have reported feeling uncomfortable including family members in
intervention beyond information sharing (Hallé, et al., 2014). Our pilot study of Aphasia-
Friendly Reading actively engaged care partners in therapy as co-readers. Interviews of
these care partners revealed that they were empowered to engage in rehabilitation
beyond just co-reading. This was a powerful and unexpected benefit of the project.
Specifically, the care partners appreciated being authentically included and responded
by being actively engaged in meaningful ways. Each care partner remarked on aphasia
and therapy as a shared concern not just of the person with aphasia but also themselves:
it’s “our aphasia”, “we’re getting better.” This aligns with findings from Cheng et al. (2021a)
who reported that care partners described having aphasia as a shared prognosis. There is
a growing movement recognizing that aphasia happens to more than just the person who
has it and that the view of the patient should be expanded to be a unit, meaning the
person with aphasia and their care partner (Hallé et. al., 2014; Off et al., 2019) and a shared
space for emotional recovery (Cheng et al., 2021b).
Hallé et al. (2014) reported SLPs may feel uncomfortable training communication
partners and providing instructions for care partner involvement despite this being
best practice. Our project actively included care partners in therapy, naturally
integrating communication partner training into sessions by clinicians modelling
16 E. L. O’BRYAN ET AL.

concepts of acknowledging and revealing competence (Kagan, 1998). One example

of the clinicians acknowledging competence was during story development–every
story line was revised until the person with aphasia approved it. The aim of
Aphasia-Friendly Reading is to include the care partner in co-constructing and
sharing person-centred stories. It is not intended to be the primary or only way
that the person with aphasia and their care partner communicate. The care
partners spoke about what they learned from the project, showing that they
learned more than just therapy techniques which reached beyond the walls of
the therapy sessions. They also began taking initiative to problem solve and make
plans about what will help their partner communicate more effectively and
improve quality of life. For example, one of the care partners (Dave) described
how he and his wife have begun to spend time figuring out what she wants to say
and then helping her to be able to say it. He identified that this was something
new they have begun since participation in the project. Another care partner
(Leah) shared how her husband’s person-centred story about his rock-and-roll
band helped him participate in a social interaction with other members of the
band.

Shifting the Power Differential within the Session

Care partners described the collaboration that occurred during the therapy ses­
sions, including co-constructing the stories, learning therapy strategies, and feeling
good about being about to teach graduate student clinicians some information
they saw as valuable. Because the care partner was actively engaged, everyone in
the project learned from each other. When the care partner is not engaged, they
miss opportunities for learning how to support their partner’s communication
outside of therapy. Actively including the care partner realigned the typical
power distribution of the clinician exuding expertise to the client and care partner,
to a more equal partnership in which the care partner is encouraged to take an
active role in supporting their family member’s communication (Bright & Reeves,
2020).
Recently, researchers have challenged rehabilitation professionals to imagine new
ways of offering services to people with aphasia and their significant others (Hallé et al.,
2014; Off et. al., 2019). Each of the care partners in this study shared ways in which the
project was different from other prior therapy experiences. They each commented on the
value of the intervention being person-centred (Worrall, 2006) and telling an important
story that the person with aphasia wanted to share with others. All three shared that the
project was fun and enabled the person with aphasia to participate in fun communicative
interactions with others. Prior research by Strong and colleagues (2018) found that
interventions targeting personal story co-construction were fun for people with aphasia
and that fun was novel in living with aphasia.

Limitations
A few aspects of the study make it difficult to know how this therapy approach
would be experienced by other care partners. One limitation is that the care
 APHASIOLOGY 17

partners were all spouses of people with aphasia. While this allowed for depth of
examining the experience of each care partner participant, the generalizability of
these three individuals’ experiences to others may be limited. We must also
acknowledge that the first author knew two of the three couples prior to the
initiation of this project through an aphasia group at their university, supervised
parts of the intervention, and also conducted the qualitative interviews.
Additionally, the second author was a member of this group and had shared
about the Aphasia-Friendly Reading approach, which he developed, with some of
the participants. We acknowledge the potential impact of social desirability due to
these relationships and have attempted to mitigate this through reflection on the
social and emotional relationship between the researcher and the participants
(Mauthner & Doucet, 2003). Further, techniques for asking questions to limit social
desirability responses (e.g., probing for more information, requesting stories or
examples) were utilised. Cues for detecting social desirability tendencies (e.g.,
denial of problems, providing vague or partial answers, nervous facial expression
or body language, or inconsistent vocabulary use) were not evident during the
interviews (Bergen & Labonté, 2020).

Future Research
Future research is needed to investigate the efficacy and effectiveness of the Aphasia-
Friendly Reading approach, to determine who are good candidates, and to explore the
experience of people with aphasia who participate in the project. Specifically, the authors
are interested to learn how people with aphasia feel about including their care partner in
speech therapy and home practice. The researchers are also interested in exploring
whether partners with different relationships, such as parent, child, other family member,
or friend, will have similar experiences. Another question raised by this study is whether
the therapy approach can have value for single people with aphasia who do not have
a primary care partner: Can the Aphasia-Friendly Reading partner be a person who shares
less history with the person with aphasia?

Clinical Implications
The current study adds evidence of the value of actively including care partners in aphasia
therapy. This result is consistent with the LPAA (Chapey et al., 2000) and the claim by Off
et al. (2019) that care partners should receive clinical services. Based on the current study
and our review of the literature, we make the following recommendations for clinicians
working with people with aphasia:

(1) Ask the person with aphasia what role they would like their care partner to play in
therapy. Consider session activities in which the person with aphasia, care partner,
and clinician will all interact. Clinicians should explore the roles of the person with
aphasia and care partner, listen to both the person with aphasia and care partner,
and discuss home practice.
(2) Educate people with aphasia and their care partners about therapy strategies
during the session, including how to acknowledge competence in the person
18 E. L. O’BRYAN ET AL.

with aphasia and how to give support when the person with aphasia requests it.
These activities can be described as care partner education and instruction for
home practice in documentation of billable sessions.
(3) Consider the Aphasia-Friendly Reading approach as one way that the care partner
can take an active role in therapy sessions.

Acknowledgments
The authors thank the participants and families and the members of the Wichita Adult Language
Lab, Taylor Brandenberger, Sydney Brown, Ellasyn Heuer, Addison Powell, and Madison Zwanziger
for serving as graduate clinicians and Sabrina Gooch, Logan Patterson, Emily Ray, and Madeline
Rondeau for transcription support, and the audience of the Aphasia Access Leadership Summit 2021
Brag and Steal session for encouragement in the early phase of this project.

CRediT Author Statement

Erin O’Bryan: conceptualisation, writing–original draft, review and editing, visualisation, investiga­
tion, supervision, analysis. Harold Regier: conceptualisation of therapy approach, writing–original
draft. Katie Strong: conceptualisation, writing–original draft, review and editing, visualisation,
analysis.

Disclosure statement
Harold Regier receives a small amount of royalties from the sale of his self-published book which is
mentioned in the article. Erin O’Bryan is employed by Wichita State University. Katie Strong is
employed by Central Michigan University. There was no funding for this project.

ORCID
Erin L. O’Bryan http://orcid.org/0000-0002-1801-6073
Katie A. Strong http://orcid.org/0000-0001-8921-9639

Data Availability Statement

The participants of this study did not give written consent for their data to be shared publicly, so
due to the sensitive nature of the research, supporting data is not available.

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Appendix: Care Partner Interview Guide

The Research Question: What is the experience of participating in the Aphasia-Friendly Reading
project like for the care partner?

Opening statement: Thank you for taking the time to meet with me today. I have some questions
for you. The questions fall into 4 sections: general questions about you and Cora/Mack/Kay,
questions about your experience of doing the Aphasia-Friendly Reading project, questions about
your interactions since doing the project, and questions about what it was like to read in front of the
aphasia group.
To start, I’d like to ask just a few questions about yourself and Cora/Mack/Kay.

Section 1: Couples Demographics

(1) How many years have you and Cora/Mack/Kay been together?
(2) I already know how old Cora/Mack/Kay is, but would you mind telling me your age?

Section 2: Experience of doing the Aphasia-Friendly Reading project

Now we are moving on to the next section, focusing on your experience participating in the
Aphasia-Friendly Reading project.

(3) What was your interest in participating?

(4) What did you hope to achieve by participating in the Aphasia-Friendly Reading project?
(5) Think back to the first few sessions. What was the process like developing the story?
(6) Tell me about the stories you developed.
(7) The essence of Aphasia-Friendly Reading is in taking turns reading lines with your partner. What
was that like for you?
(8) What was it like to be an active part of the therapy session? Is this different than other therapy
interactions? If so, how?
(9) How do you think Cora/Mack/Kay felt about having you be a part of the therapy?
(10) What was it like working with the student clinicians on reading the story aloud?
(11) During the treatment sessions, the student clinicians tried to help Cora/Mack/Kay improve their
reading of the story. Did you learn anything from watching what the student clinicians did?
(12) Tell me about when you practiced the story together at home.
(13) Did you notice any differences in how Cora/Mack/Kay read aloud at home versus at the clinic?
(14) Was there anything you didn’t like about Aphasia-Friendly Reading?
(15) Is there anything you would recommend changing about the Aphasia-Friendly Reading
process?

Section 3: Interactions between you and your care partner since participating
Now I’d like to ask you a few questions about the interactions you and Cora/Mack/Kay have had
since participating in this program.

(16) Has your communication with each other changed since doing the Aphasia-Friendly Reading
project? If so, how?
(17) Has the way Cora/Mack/Kay communicates changed since doing the Aphasia-Friendly
Reading?
(a) Tell me more.
(b) Have there been any instances where she/he used lines from the story during everyday
conversation?
(18) Did you learn anything about how to support Cora/Mack/Kay in their communication? If so,
would you expand?
(19) Did the Aphasia-Friendly Reading approach provide you with opportunities to have
a conversation with Cora/Mack/Kay?
(20) Have you and Cora/Mack/Kay written any other stories since you completed the project?
22 E. L. O’BRYAN ET AL.

Section 4: Experience of reading the story to aphasia group

The last set of questions are about when you read the story to the aphasia group.

(21) I’d love to hear what it was like for you to read in front of the group./What happened when you
read to the Aphasia Group?
(22) How did you feel when you were reading to the group?/What feelings did this (reading to the
Aphasia Group) provoke in you?
(23) What did you notice about the Aphasia Group’s reaction to your reading?
(a) Were you expecting that reaction?
(24) Have you shared your Aphasia-Friendly Reading story with anybody else outside of Aphasia
Group?
(a) Can you tell me more about that?
(25) What would you say to other couples who are thinking about doing the Aphasia-Friendly
Reading project?

Closing question:
(26) As we wrap up, is there anything you’d like to share with me that I didn’t ask about?