HEART: AN INTERGENERATIONAL READING PROGRAM

FOR PERSONS WITH APHASIA AND CHILDREN

A Thesis

Presented to the faculty of the Department of Communication Sciences and Disorders

California State University, Sacramento

Submitted in partial satisfaction of

the requirements for the degree of

MASTER OF SCIENCE

in

Communication Sciences and Disorders

by

Christina Ibarra

FALL

2019

ii

© 2019

Christina Ibarra

ALL RIGHTS RESERVED

iii

HEART: AN INTERGENERATIONAL READING PROGRAM

FOR PERSONS WITH APHASIA AND CHILDREN

A Thesis

by

Christina Ibarra

Approved by:

__________________________________, Committee Chair Darla K. Hagge Ph.D., CCC-SLP

__________________________________, Second Reader

Robert A. Pieretti Ph.D., CCC-SLP

____________________________

Date

iv

Student: Christina Ibarra

I certify that this student has met the requirements for format contained in the

University format manual, and that this thesis is suitable for shelving in the Library and

credit is to be awarded for the thesis.

_______________________________, Graduate Coordinator __________________

Darla K. Hagge Ph.D., CCC-SLP Date

Department of Communication Sciences and Disorders

v

Abstract

of

HEART: AN INTERGENERATIONAL READING PROGRAM

FOR PERSONS WITH APHASIA AND CHILDREN

by

Christina Ibarra

Aphasia is a communication disorder caused by damage to the regions of the brain

responsible for language (Brookshire & McNeil, 2015). Lack of awareness regarding

aphasia and its chronicity negatively impact service delivery across the healthcare

system (Simmons-Mackie, 2018). Aphasia can result in social isolation and decreased

participation (Miller et al., 2010). This study was designed to examine the effects of

participation in an intergenerational reading program for three individuals with aphasia.

To that end, the HEART program (Helping Each Other And Reading Together) was

founded through the articulation of three Applied Communication Sciences Lab

programs run by faculty of the Communication Sciences and Disorders Program. The

Quality of Communication Life Scale (QCL) (Paul et al., 2004), the Communication

Confidence Rating Scale for Aphasia (CCRSA) (Babbitt, Heinemann, Semik, &

Cherney, 2011; Cherney, Babbitt, Semik, & Heinemann, 2011), and language sample

tasks were administered before and after intervention. A post intervention social

validation/satisfaction survey was also conducted. Results were mixed for the QCL and

vi

CCRSA, with one participant’s scores declining while the others increased. Efficiency

of verbal output was increased for all participants during post assessment. Social

validation/satisfaction survey results were positive and indicated meaningful

participation on the part of PWA. All PWA involved have asked to continue to

participate in the HEART program, which has been continued by faculty members Dr.

Darla Hagge and Dr. Robert Pieretti at California State University, Sacramento.

__________________________________, Committee Chair

Darla K. Hagge Ph.D., CCC-SLP

_______________________

Date

vii

ACKNOWLEDGEMENTS

I owe a special and heartfelt thanks to my husband and children, as well as my

parents and siblings. They have been a constant source of support, love, and laughter. I

am also grateful for my very special cohort of warm, wise, and collaborative

individuals. My closest friends have been especially helpful in navigating the day to day

graduate school experience.

Research assistants Andrew Slakey, Jessica Newman, Maryna Biletsky, Sean

Stevens, and Bayan Abed made the project possible. Apryl Sullivan acted as an

undergraduate liaison and handled her role and all interactions with incredible

professionalism. The Maryjane Rees Language, Speech and Hearing Center (MRLSHC)

and Sacramento Food Bank & Family Services (SFBFS) both provided important

logistical support for this project. MRLSHC and SFBFS personnel were valuable

collaborative partners and were very encouraging before, during, and after the study.

I would also like to acknowledge the tremendous support I received from the

wonderful faculty of the Communication Sciences and Disorders program. Not only did

these educators devote their time to selflessly sharing a wealth of knowledge with their

students, they also took the time to assist me with this study. Dr. Celeste Roseberry has

always been a source of encouragement and has taken every step along the way to

ensure my academic progress and personal well-being. I have greatly appreciated the

diplomacy and perennial enthusiasm of Dr. Robert Pieretti, who has consistently been

viii

willing to answer my many questions with genuine caring and patience. Dr. Darla

Hagge has provided insight, dedication, and purposeful guidance throughout this

project. Also, thank you Dr. Hagge, for personally supporting me and my peers through

any and all challenges we have faced while making our way through the educational

process as Graduate Coordinator. It has truly been an honor and privilege to work with

these inspirational faculty members who have dedicated themselves to community

service and making the world a better place.

ix

TABLE OF CONTENTS

Page

Acknowledgements ..................................................................................................... vii

List of Tables ............................................................................................................... xii

Chapter

1. BACKGROUND ....................................................................................................... 1

Aphasia ...................................................................................................................... 1

Incidence and prevalence. ..................................................................................... 1

Etiological statistics. .............................................................................................. 1

Risk factors. ........................................................................................................... 3

Negative Impacts of Aphasia ..................................................................................... 5

Effects on the individual. ....................................................................................... 5

Effects on family and caregivers. .......................................................................... 9

Effects on society. ............................................................................................... 10

Healthcare Service Delivery .................................................................................... 11

Continuum of care framework. ............................................................................ 11

Continuum of care in practice. ............................................................................ 14

Factors negatively impacting intervention. ......................................................... 17

Increasing Participation to Decrease Social Isolation ............................................. 19

First principle – a strong theoretical basis. .......................................................... 19

x

Second principle - social integration. .................................................................. 21

Third principle - active participation. .................................................................. 22

2. LITERATURE REVIEW ........................................................................................ 24

Research Questions ................................................................................................. 27

3. METHODOLOGY .................................................................................................. 29

Participants .............................................................................................................. 30

Measures .................................................................................................................. 31

Procedures ............................................................................................................... 33

Preparation. .......................................................................................................... 33

Prerequisites. ....................................................................................................... 35

Intervention .............................................................................................................. 38

Day 1. .................................................................................................................. 38

Day 2. .................................................................................................................. 39

Day 3. .................................................................................................................. 40

Day 4. .................................................................................................................. 40

4. RESULTS ................................................................................................................ 42

Quality of Communication Life (QCL) ................................................................... 42

Communication Confidence Rating Scale for Aphasia (CCRSA) .......................... 46

Language Sample and Verbal Description Task ..................................................... 48

Social Validation/Satisfaction Survey ..................................................................... 50

xi

Reading practice records. ........................................................................................ 52

5. DISCUSSION .......................................................................................................... 54

Limitations ............................................................................................................... 56

Future Recommendations ........................................................................................ 57

Conclusion ............................................................................................................... 58

References ................................................................................................................... 60

xii

LIST OF TABLES

Tables Page

1. Demographics………………………………… .... .………………………………......31

2. Summary of Scores for Quality of Communication Life Scale……………………….43

3. Summary of Scores for Communication Confidence Rating Scale for Aphasia……...46

4. Summary of Verbal Output Task Results……….…………………………………….49

5. Summary of Responses of Social Validation/Satisfaction Survey…………………....51

1

Chapter 1

BACKGROUND

Aphasia

Aphasia is a communication disorder caused by damage to the regions of the

brain responsible for language, but which does not impact intelligence (National Aphasia

Association, n.d.; National Stroke Association, 2017). This language impairment can be

seen to cross all language modalities (auditory comprehension, verbal expression, reading

comprehension, and written expression), can be classified into various subtypes, and may

occur with varying levels of severity (Brookshire & McNeil, 2015). Due to the number of

variables affecting the presentation of aphasia, including pre-morbid elements, individual

preferences and personality traits, people with aphasia (PWA) are a highly homogeneous

population (Bakheit, Shaw, Carrington, & Griffiths, 2007; Brookshire & McNeil, 2015;

National Institute of Neurological Disorders and Stroke, 2019).

Incidence and prevalence.

Incidence estimates for aphasia are 100,000 new cases per year (National Institute

on Deafness and Other Communication Disorders, 2015). Prevalence is conservatively

estimated at 2,500,000 people living with aphasia in the United States (based on a

potential range of 2,463,681 to 4,108,469 individuals) (Simmons-Mackie, 2018).

Etiological statistics.

Stroke etiology.

The most common etiologies of aphasia in the United States are stroke, traumatic

brain injury (TBI), and brain tumor (Simmons-Mackie, 2018). Prevalence estimates of

2

these etiologies show that stroke is the leading cause of aphasia. Based on extrapolatory

figures, the number of individuals living with stroke-induced aphasia fall between

2,210,000 and 2,550,000 (Flowers et al., 2016; New Jersey Aphasia Study Commission,

2015; Simmons-Mackie, 2018).

TBI etiology.

Another primary cause of aphasia is TBI; estimated prevalence figures based on

extrapolatory data that fall between 64,653 and 1,228,421 (Hoofien, Gilboa, Vakil, &

Donovick, 2001; Norman et al., 2013; Safaz, Alaca, Yasar, Tok, & Yilmaz, 2008). It is

possible that differences in potential causes of TBI and inconsistent sensitivity in

screening/assessment measures used by separate researchers create a possible

discrepancy indicated by the wide range of prevalence estimates for TBI related aphasia

(Hoofien et al., 2001; Norman et al., 2013; Safaz et al., 2008; Simmons-Mackie, 2018).

Brain tumor etiology.

The presence of malignant or non-malignant brain tumor(s) in association with

aphasia is also a primary etiology of aphasia (Simmons-Mackie, 2018). Prevalence based

on extrapolatory data is estimated between 198,028 and 330,048 (Davie, Hutcheson,

Barringer, Weinberg, & Lewin, 2009; Simmons-Mackie, 2018). The above figures do not

include metastatic brain tumors (secondary tumors) which develop during cancer in an

estimated 20 to 40% cases (Pietzner et al., 2009; Simmons-Mackie, 2018).

3

Risk factors.

Risk factors for the primary causes of aphasia are in turn associated with an

increased possibility of aphasia. These factors include stroke, TBI, and brain tumor (an

acquired condition). Additional discussion of these risk factors will be discussed in this

section.

Factors leading to increased stroke risk.

Risk factors for stroke can be classified into those which are modifiable, through

behavior and/or medication, and nonmodifiable circumstances such as genetics

(American Stroke Association, 2019; Centers for Disease Control and Prevention, 2018).

O’Donnell et al. (2010) found that modifiable factors including hypertension, current

smoking, abdominal obesity, diet, and physical activity accounted for 80% of stroke

globally in a large standardized study. Stroke risk is also increased by nonmodifiable

factors, including increasing age, race (African Americans have nearly double the risk of

experiencing a first stroke than whites), genetics, and history of a prior stroke (Dickey et

al., 2010; Johns Hopkins Medicine, 2019; Mozaffarian et al., 2016; Simmons-Mackie,

2018).

Additional environmental elements which are associated with increased stroke

likelihood include lower socioeconomic status (SES) and lower level of education

(Dickey et al., 2010; Mozaffarian et al., 2016; Neyer et al., 2007). Geographical location

is also significantly related to increased risk of stroke (Johns Hopkins Medicine, 2019;

Neyer et al., 2007). Potentially due to the presence or combination of these and other risk

factors, eleven states with higher incidence of stroke comprise the “stroke belt” including

4

Alabama, Arkansas, Georgia, Indiana, Kentucky, Louisiana, Mississippi, South Carolina,

North Carolina, Tennessee, and Virginia (Johns Hopkins Medicine, 2019; Liao,

Greenlund, Croft, Keenan, & Giles, 2009; National Heart, Lung, and Blood Institute,

1996).

Factors leading to increased risk of TBI.

Gender, age, race, and socioeconomic status play a role in the demographic

populations at higher risk for TBI (Bruns & Hauser, 2003; Centers for Disease Control

and Prevention, 2019; Wagner, Sasser, Hammond, Wiercisiewski, & Alexander, 2000).

Males have a higher likelihood of sustaining a TBI across all age groups (Bruns &

Hauser, 2003; Mayo Clinic, 2019b). The highest incidence of TBI was reported in young

children (aged 0-4), adolescents and young adults in the 15 to 24 age group, and the older

adult and geriatric population above age 60 (Centers for Disease Control and Prevention,

2019; Mayo Clinic, 2019b). Traumatic brain injuries can occur as a result of falls (most

likely to occur in the very young and elderly), motor vehicle accidents, sports injuries

(most likely to occur in adolescents), violence, and combat injuries (Bruns & Hauser,

2003; Centers for Disease Control and Prevention, 2019; Mayo Clinic, 2019b). African

Americans, especially young males, are at higher risk of TBI (Bruns & Hauser, 2003;

Centers for Disease Control and Prevention, 2016; Wagner et al., 2000). Additionally,

lower SES is associated with increased risk of TBI due to increased likelihood of

intentional brain injury (Bruns & Hauser, 2003; Wagner et al., 2000).

5

Factors leading to increased risk of brain tumor.

Reported risk factors for primary brain tumor include advancing age, male gender

(with the exception of meningioma), family history (approximately 5%), and exposure to

ionizing radiation (e.g., X-rays) (American Society of Clinical Oncology [ASCO], 2019).

Syndromes which may increase the probability of brain tumor development include

neurofibromatosis 1 (NF1), neurofibromatosis 2 (NF2), tuberous sclerosis, Von Hippel-

Lindau disease, Li-Fraumeni syndrome, Gorlin syndrome (basal cell nevus syndrome),

Turcot syndrome, Cowden syndrome, or idiopathic genetic disorders which are unique to

a specific family (American Cancer Society, 2017). Research to determine specific

causes of brain tumors is still being conducted (Butowski, 2015; Connelly & Malkin,

2007; Fisher, Schwartzbaum, Wrensch, & Wiemels, 2007; Mayo Clinic, 2019a).

Negative Impacts of Aphasia

Effects on the individual.

As a language impairment, aphasia impacts all four language modalities

(listening, speaking, reading, and writing) which directly interrupt interpersonal

communication in every aspect of life. Negative consequences of aphasia occur without

regard to etiology; therefore aphasia resulting from a stroke, TBI, or brain tumor causes

indistinguishable difficulties (Simmons-Mackie, 2018). Aphasia has been found to result

in greater disability with a lower quality of life for PWA when compared to other stroke

survivors (Flowers et al., 2016; Hilari & Byng, 2009). Significantly, in their large scale

study of 60 diseases and 15 health conditions, Lam and Wodchis (2010) found that

aphasia was reported to have the greatest negative impact on health-related quality of life.

6

The devastating nature of the impacts caused by aphasia (loss of language) may

be exacerbated due to a combination of losses and barriers faced by PWA. PWA are less

likely to be discharged home after a stroke (where they would be exposed to familiar

settings, routines, and loved ones) than those without aphasia, frequently entering long

term care settings (Bersano, Burgio, Gattinoni, & Candelise, 2009; Dickey et al., 2010;

Flowers et al., 2016). Worse yet, Azios (2018) described a lack of communicative

support in long term care facilities among elements that discouraged social interaction, a

shortcoming especially detrimental to PWA given the associated communication

impairments.

Participation.

The World Health Organization (WHO) developed the International

Classification of Functioning, Disability and Health (ICF) which integrates the medical

and social model and outlines a holistic biopsychosocial approach to well-being (World

Health Organization, 2001, 2002). This integration broadens and meaningfully expands

the description of health by providing a composite concept which addresses the

multidimensional nature of wellness (World Health Organization, 2002, 2013). The

framework structured by the ICF classifies functioning and disability, (including body

functions, body structures, activities and participation) and contextual factors (including

environmental and personal factors) (World Health Organization, 2001, 2013).

While the presence of aphasia is factually indicative of an impairment in body

structures and functions, all factors of the ICF can be potentially impacted by a

diminished ability to communicate. Specifically, opportunities for participation can be

7

observed to decrease markedly in the face of communication barriers created by aphasia

(Lee, Lee, Choi, & Pyun, 2015; Winstein et al., 2016). In fact, PWA participated in fewer

activities and reported lower quality of life in the face of similar physical abilities, well-

being, and social support than those without aphasia (Hilari, 2011). Furthermore, it is

very challenging for PWA to return to employment despite their willingness, causing

distress and further reducing their opportunities for interaction with others (Simmons-

Mackie, 2018). PWA’s significant reduction in social participation was found to lead

disturbingly to decreased community integration and depression (Lee et al., 2015).

Isolation.

It is worth noting that aphasia has been found to be the sole stroke-related factor

predictive of an individual’s social network six months after the occurrence of a stroke

(Northcott, Marshall, & Hilari, 2016). In fact, it has also been found that aphasia is the

most important predictor of social outcome in stroke survivors with aphasia as measured

by the cognitive Functional Independence Measure used to assess communication and

social interaction (Gialanella, Bertolinelli, Lissi, & Prometti, 2011). The result of

lessened participation by PWA as described by the ICF can be clearly linked to social

outcomes in consideration of these findings (Gialanella et al., 2011; Northcott et al.,

2016; Simmons-Mackie, 2018).

Social network (SN) is a term that describes an individual’s network of

interpersonal relationships including family, friends, acquaintances, coworkers, and paid

support personnel (Vickers, 2010). The impact of SN on the lives of seniors has been

studied throughout cultures and countries worldwide. There are many reported benefits of

8

strong SNs. These benefits are associated with positive social support and health

(Vickers, 2010) and serve as a buffer against stress (House, 1981). Benefits of strong

social networks also have been noted to include the improvement of overall health

(Berkman, Glass, Brissette, & Seeman, 2000), maintenance of overall functional ability,

and protection against disability (Avlund, Lund, Holstein, & Due, 2004). Conversely, a

lack of SNs has been linked to reduced quality of life (Bays, 2001) and to decreased

physical and/or mental health (Michael, Colditz, Coakley, & Kawachi, 1999). Moreover,

there is a strong negative association between absence of friends and physical functioning

(Michael et al., 1999).

PWA’s relationships, friendships, and ultimately entire social networks can be

seen to diminish immediately following the onset of stroke with resultant aphasia

(Vickers, 2010). Furthermore, they experience a reduction in opportunities for novel

communication partners and settings (Vickers, 2010). This is likely because without

supported communication strategies, people with aphasia often have difficulty with

conversation and discourse (Hickey, Bourgeois, & Olswang, 2004).

Not surprisingly, PWA are at risk for long term loneliness and isolation as a result

of the collapse of their social networks (Simmons-Mackie, 2018; Vickers, 2010). Recent

research indicated that objective social isolation (i.e., a quantifiable lack of contact with

others) as well as subjective social isolation (i.e., personal perception of loneliness) were

found to be risk factors for premature mortality comparable to well-established risks

(e.g., obesity, substance abuse, access to health care) as identified by the U.S. Department

9

of Health and Human Services (Holt-Lunstad, Smith, Baker, Harris, & Stephenson,

2015).

Effects on family and caregivers.

Due to the large-scale changes that occur in the lives of PWA as a result of

aphasia, their family members and caregivers frequently experience negative changes as

well (Grawburg, Howe, Worrall, & Scarinci, 2013; Simmons-Mackie, 2018). The

detrimental impacts on loved ones can effectively generalize aphasia into a family

problem (Grawburg et al., 2013). This is not a phenomenon exclusive to aphasia; the ICF

addresses third-party disability in family members and caregivers as a consequence of a

loved one’s health difficulties (Threats, 2010; World Health Organization, 2001). The

language provided by the ICF, however, has proven useful in the emerging delineation

and articulation of third-party disability in the family members and caregivers of PWA

(Grawburg et al., 2013; Threats, 2010).

Researchers examining third-party disability associated with aphasia have found

detrimental physical, mental, and emotional effects on family members involved with

PWA (Grawburg, Howe, Worrall, & Scarinci, 2019). Negative emotional consequences

reported by family members included anxiety, depression, a sense of a loss of control,

and an effort to maintain emotional balance (Grawburg et al., 2013). Adverse physical

effects reported by family members included tiredness, worsening memory, and changes

to digestive, metabolic, and endocrine functions (Grawburg et al., 2019).

As described above, PWAs experience decreased social networks and an increase

in isolation. In a notable parallel, this isolation is mirrored by the emotional loneliness

10

and isolation experienced by family members and caregivers (Nätterlund, 2010). Threats

(2010) also outlined the possibility of “decreased communication effectiveness and

satisfaction over time” given a tense or distressed communication environment. While

coping with these personal and emotional issues, family members are often

simultaneously facing additional stressors, including lowered household income (due to

the PWA’s inability to work and time constraints caused by caregiving duties) and

increased healthcare costs (Grawburg, Howe, Worrall, & Scarinci, 2014; Simmons-

Mackie, 2018).

With regard to PWA recovery and living with the residual effects of stroke,

education and support of family members has been cited as the major environmental

factor when viewed in context of the principles outlined by the ICF (Miller et al., 2010).

In combination with the negative repercussions experienced by the PWA directly, the

third-party disability implications for family members of PWA contribute to the overall

damaging interpersonal effects of aphasia.

Effects on society.

In addition to the enormous personal and emotional costs to PWA and their

families, society faces identifiable fiscal ramifications of aphasia (Clarke & Forster,

2015; Ellis, Simpson, Bonilha, Mauldin, & Simpson, 2012; Norrving & Kissela, 2013).

Lost wages on the part of PWA and family members prevent them from contributing

monetarily to the communities in which they live. PWA also generally require longer

hospital stays, contributing to increased healthcare costs (Dickey et al., 2010; Ellis et al.,

2012; Gialanella & Prometti, 2009). In fact, aphasia was determined to be an independent

11

predictor of a number of negative healthcare outcomes, including a longer period of

hospitalization (Dickey et al., 2010). Unfortunately, although PWA experience prolonged

hospital stays, they were found to make significantly less efficient progress during their

time receiving rehabilitation services (Gialanella & Prometti, 2009). Higher morbidity,

disability, and mortality rates were also found in PWA, leading to increased system costs

for aphasia, independent of generalized stroke-related care (Ellis et al., 2012; Norrving &

Kissela, 2013).

After hospital discharge, the increased expenditure required for aphasia is seen to

continue due to residual disability, giving rise to the heightened and continued need for

rehabilitation services (Bersano et al., 2009; Dickey et al., 2010; Obembe, Simpson,

Sakakibara, & Eng, 2019). However, despite the increased healthcare costs associated

with aphasia both during and after hospitalization, functional and comprehensive

intervention remains elusive as discussed in the following section.

Healthcare Service Delivery

Continuum of care framework.

As noted above, the presence of aphasia is most commonly preceded by a stroke.

Therefore, the path of health care services administered to PWA most often parallels that

of individuals who have suffered a stroke. After emergency department response, and

dependent upon individual circumstances, the pathway of service delivery commonly

progresses with acute care provided during hospitalization, rehabilitation (potentially

inpatient, outpatient, or both), and community and long-term care (Cameron, Tsoi, &

Marsella, 2008; Clarke & Forster, 2015; Duncan et al., 2005; Miller et al., 2010; Winstein

12

et al., 2016). The duration of time spent at each stage of the continuum and location of

service provision may also vary depending upon numerous patient circumstances

including healthcare coverage, presence of medical co-morbidities, and severity of lesion

(Duncan et al., 2005; Miller et al., 2010; Winstein et al., 2016). Although all patients do

not progress through each of the possible levels in the continuum of care, the levels are

all described below.

Emergency services.

Individuals who experience symptoms of a stroke are often first seen in the

emergency department and progress through the continuum of care for recovery and

rehabilitation (Cameron et al., 2008; Clarke & Forster, 2015; Miller et al., 2010). When

patients at the emergency department arrive, they are evaluated for diagnostic purposes

and to determine if hospital admission is warranted (Simmons-Mackie, 2018).

Acute care.

The general timeline for hospital-based acute intensive care begins with the onset

of symptoms, hospital admission, and continues for a number of hours which is

determined by stroke-related factors (Miller et al., 2010). The pathway of delivery

progresses to hospital-based acute care for a number of days, also determined by stroke-

related factors (Miller et al., 2010; Winstein et al., 2016). Rehabilitation is often begun

during the acute stage of care (Duncan et al., 2005; Winstein et al., 2016). At this acute

stage, many PWA and family members may not realize the consequences aphasia will

have in their day-to-day living (Vandenborre, Visch-Brink, & Mariën, 2015).

13

Inpatient rehabilitation.

The next phase of the continuum is inpatient rehabilitation care (also called

postacute rehabilitation) which may be provided in a hospital for a period of 8-30 days,

with an average stay of 15 days (Duncan et al., 2005; Miller et al., 2010; Winstein et al.,

2016). Inpatient rehabilitation care can also be provided by a skilled nursing facility (also

termed subacute care), wherein the maximum length of treatment is highly variable and

may last for up to 100 days (Miller et al., 2010; Winstein et al., 2016). Long-term care

may also be required for stroke survivors and is provided by hospitals (for an average

stay of 25 days) or skilled nursing facilities (for prolonged and highly variable stays)

(Miller et al., 2010; Winstein et al., 2016). As rehabilitation services apply to a

heterogeneous population, the duration, frequency, and type of interventions

implemented are structured to meet varying patient needs (Vandenborre et al., 2015;

Winstein et al., 2016). Most speech and language therapy is delivered during inpatient

rehabilitation care (Marshall, 2014). At this stage, PWA and their families are generally

deeply involved with the rehabilitation process (Santos, Farrajota, Castro-Caldas, & De

Sousa, 1999).

Outpatient rehabilitation.

Following the inpatient rehabilitation care phase, stroke survivors typically move

to an outpatient, or community-based level of care to receive chronic outpatient

rehabilitation (Duncan et al., 2005; Miller et al., 2010; Winstein et al., 2016). Early

supported discharge services can allow for a more rapid return to the community when

14

there is a rehabilitation team available that can provide support for those patients deemed

appropriate to receive them (Duncan et al., 2005; Winstein et al., 2016). For patients who

have been certified home-bound by a physician, services at this stage may be provided a

home health agency in the individual’s home, assisted living facilities, or group homes

(Miller et al., 2010; Winstein et al., 2016). Stroke survivors receiving outpatient therapy,

hospital-based or at a clinic in the community, must travel to obtain care (Winstein et al.,

2016). Regrettably, despite this comprehensive, multi-tiered healthcare framework, there

are pervasive factors which can reduce the scope and effectiveness of treatment for PWA

across the continuum of care.

Continuum of care in practice.

Emergency.

Emergency care personnel are required to “triage” patients during this stage, and

language is often not evaluated or referred for future assessment, potentially under

identifying and underserving PWA (Simmons-Mackie, 2018).

Acute care.

The priority of acute care is patient stabilization, safety, mobilization, and

encouragement of self-care (Duncan et al., 2005; Winstein et al., 2016). When possible,

communicative rehabilitation can be initiated as soon as the patient is able to tolerate it,

ideally beginning with assessment of all language modalities (i.e., listening, speaking,

reading, and writing) (Miller et al., 2010). PWA are also optimally given emotional

support, guidance, and counseling by health care providers (Duncan et al., 2005;

15

Marshall, 2014). Close relatives of PWA, however, reported experiencing a lack of

support from the healthcare system at the acute stage of the stroke care pathway

(Nätterlund, 2010). Unfortunately, insufficient service provision at the acute level of care

has been found to include significant limitations in communication access for PWA,

insufficient speech therapy services for PWA, and inadequate training and education for

family members (Simmons-Mackie, 2018).

Inpatient rehabilitation.

As the acute phase of care resolves safely, the focus of postacute care shifts to

address residual deficits and impairments (Duncan et al., 2005). During inpatient

rehabilitation of communication deficits, the priorities are: to enhance communication

and cognition, establish beneficial compensatory strategies, and provide education and

counseling to patients and family members (Miller et al., 2010). The use of standardized

tools in screening and comprehensive language assessment (i.e., listening, speaking,

reading, and writing), as well as psychosocial evaluation is recommended at this stage

(Duncan et al., 2005). Because families play a vital role in providing PWA with

meaningful support, they should be considered an important environmental factor in

recovery and educated accordingly (Duncan et al., 2005; Miller et al., 2010).

Unfortunately, due to the structure of the healthcare system, patients may receive

reduced inpatient rehabilitation services with incomplete evaluation (Miller et al., 2010).

The healthcare system’s protocol of “pushing” patients out of acute care hospitals puts

PWA and their caregivers in the uncertain position of navigating the rest of the levels of

care independently (Cameron et al., 2008). Inadequate postacute care and rehabilitation

16

can negatively impact medical morbidity, depression, autonomy, and functional

independence (Winstein et al., 2016). In the absence of adequate support and resources, it

is difficult for patients to sustain therapeutic progress and successfully undertake

community reintegration (Duncan et al., 2005).

Outpatient rehabilitation and long-term care.

In regard to language, recovery from stroke and resultant aphasia can be seen to

change over time (Bakheit et al., 2007; Marshall, 2014). Spontaneous recovery from

aphasia can begin a few days after onset, with the fastest rate of improvement in the first

four weeks (Bakheit et al., 2007; Marshall, 2014). Although results were not as rapid,

treatment after this showed continued success in post-acute and chronic aphasia (Bakheit

et al., 2007; Basso & Macis, 2011; Meinzer, Djundja, Barthel, Elbert, & Rockstroh, 2005;

Winstein et al., 2016). However, many healthcare providers are unaware of the potential

for continued improvement, creating disparities in the care of long-term and chronic

phases of stroke recovery (Miller et al., 2010). Long-term treatment of language is

recommended for stroke survivors (Miller et al., 2010). Sadly, PWA may only receive a

few outpatient visits depending on funding (Marshall, 2014).

However, the focus of treatment for stroke survivors shifts over time from the

medical model, focused on the site of lesion and sequelae, to the social model,

characterized by an emphasis on the social context of communication (Vandenborre et

al., 2015). Physical structure and function aspects of the ICF (including

pathophysiological processes) are the scope of acute stroke management, while activity

and participation aspects of the ICF (including community reintegration and vocation) are

17

of greater concern during later poststroke recovery (Miller et al., 2010; Winstein et al.,

2016). Outpatient and long-term care assessment and treatment should therefore prioritize

activity and participation needs of stroke survivors (Miller et al., 2010; Winstein et al.,

2016). Accordingly, functional goals should be the basis of evidence-based interventions,

and community resources should be used to aid community reintegration (Duncan et al.,

2005).

Factors negatively impacting intervention.

Unfortunately, there are factors which can lead to inadequate service provision,

and which negatively affect the quality of intervention, for individuals with aphasia

across all levels of the continuum of care (Simmons-Mackie, 2018). The first factor being

the lack of adequate “awareness and knowledge” of aphasia by healthcare personnel and

in society (Miller et al., 2010; Simmons-Mackie, 2018). The second factor restricting

service for PWA is insufficient funding across the continuum of care (Simmons-Mackie,

2018; Winstein et al., 2016). The third factor negatively impacting service to PWA is the

lack of awareness that aphasia is a chronic condition, and the failure to treat it as such

(Simmons-Mackie, 2018; Winstein et al., 2016). In fact, the realization of the lasting

impacts of stroke occur as patients transition from acute and postacute care to daily life

(Duncan et al., 2005; Miller et al., 2010). Financial resources directed at stroke recovery

are disproportionately channeled to the acute inpatient hospital care (up to 70% of first-

year costs), leaving little to support stroke survivors in long-term recovery (Miller et al.,

2010; Winstein et al., 2016). The majority of stroke victims and PWA continue to

experience residual deficits (e.g., physical, cognitive, emotional) but find themselves with

18

a scarcity of funding and informational resources (Bersano et al., 2009; Miller et al.,

2010; Obembe et al., 2019; Simmons-Mackie, 2018; Threats, 2010).

Issues stemming from the chronicity of aphasia (i.e., the chronic stage of living

with aphasia) are compounded by the neglect of the participation domain of the ICF

along the stroke care pathway (Simmons-Mackie, 2018). Assessment and treatment of

aphasia continue to target the language impairment (body structure and function) without

embracing the other domains of activity and participation (including community

reintegration) or personal and environmental factors (including family members) (Miller

et al., 2010; Simmons-Mackie, 2018).

The failure to expand treatment from the medical model to include the social

model exposes PWA to the health risks of isolation and depression discussed above,

including the significantly increased risk of mortality (Holt-Lunstad et al., 2015; Holt-

Lunstad, Smith, & Layton, 2010; Luo, Hawkley, Waite, & Cacioppo, 2012). Due to

difficulty accessing services in the community and fragmented management of aphasia

across the healthcare continuum, community reintegration is challenging for PWA and

requires guidance and communicative resources (Cameron et al., 2008; Simmons-

Mackie, 2018). The healthcare system would do well to adopt a biopsychosocial model

inclusive of participation for PWA to best utilize resources for rehabilitation (Simmons-

Mackie, 2018). Speech-language pathologists in particular should be involved in assisting

PWA to access opportunities for participation, especially in relation to the chronicity of

aphasia (Howe, 2017).

19

Increasing Participation to Decrease Social Isolation

In light of previously reviewed decreased participation on the part of PWA, high

risk of isolation (a morbidity risk), and the need for comprehensive services for PWA, the

current study was developed to address community reintegration and thereby decrease

social isolation. In 2011, Dickens, Richards, Greaves, and Campbell completed a

systematic review of the literature to identify those interventions that successfully

decreased social isolation in older adults. The authors identified programs that reported

successful intervention outcomes in mitigating social isolation and reported three

necessary variables: the intervention was (a) grounded in a strong theoretical basis, (b)

integrated the individual in some type of social and/or group activity, and (c) provided a

role for the seniors to be active participants. The combination of these three factors were

associated with improving social connectivity for seniors who were identified as socially

isolated. These factors can be aligned with the principles upon which the current study

has been based and expanded to include benefits for PWA.

First principle – a strong theoretical basis.

To address the first component (i.e., [a] grounded in a strong theoretical basis)

several key factors were examined and found to support an intergenerational storybook

reading activity for PWA. An intergenerational aspect was used in framing this study as it

offered an additional and complementary research base. In their comprehensive review,

Kuehne and Melville (2014) describe several theoretical frameworks used in designing

intergenerational programs. Chief among these were contact theory to address critical

elements in interactive contexts and human development theory to address individual

20

development in programming (Kuehne & Melville, 2014). Contact theory introduced by

Allport (1954) posits the importance of four conditions to create progressive contact

between groups: equal group status, meaningful interactions, intergroup cooperation, and

support from authorities, law or custom (Kuehne & Melville, 2014; Mckay, 2018).

Theoretical support associated with benefits for individual participants is outlined

in human development theory with an emphasis on Erikson's stages of psychosocial

development (Kuehne & Melville, 2014). Erikson’s stages have played a principal role in

the field of intergenerational programming (Kuehne & Melville, 2014). Erikson’s seventh

stage, which deals with the concepts of generativity versus stagnation, is a frequently

referenced psychosocial stage in intergenerational program literature (Kuehne &

Melville, 2014). Generativity can be described as the perception of connection with the

future, expansion of self into the future, and the guidance of future generations (Erikson,

1964; Kuehne & Melville, 2014; Murayama et al., 2015). In some instances, generativity

has expanded ideologically to intergenerativity in order to emphasize the concepts of

“between” and “among” denoted by the prefix “inter” and leading to greater positivity in

practice (George, 2011a; Whitehouse, Ritchey, Schiller, & Willoughby, 2009).

An additionally supportive theoretical construct represented in the literature is the

International Classification of Functioning, Disability and Health (ICF), as described

above, a framework for evaluating health and disability which provides a biopsychosocial

framework for care (World Health Organization, 2001). In light of the decrease in life

participation that is reported for PWA, it is crucial to ensure that activity and

participation aspects of the ICF are incorporated into potential intervention (Miller et al.,

21

2010; Simmons-Mackie, 2018; Winstein et al., 2016). This includes ensuring the

presence of opportunities for social and interpersonal interaction (Miller et al., 2010;

Simmons-Mackie, 2018; Winstein et al., 2016). Finally, and significant to the creation of

this program, the personal goals of PWA were examined and coded in reference to the

ICF, and one of nine major categories found was the desire to help others (Worrall et al.,

2011). Participating as a group with other volunteers in a community-based program for

children who are under-resourced, as proposed by this study, is one way to help others in

need.

Second principle - social integration.

To address the second component above (i.e., [b] integrated the individual in

some type of social and/or group activity), this study integrates PWA into an established

community-based group reading program that serves some of the most at-risk pediatric

populations in the Sacramento area. Specifically, a small cadre of trained volunteers read

appropriate age-level books to young children while modeling engaging reading

strategies for family members and caretakers to support pre-literacy and literacy skills.

This activity will provide participants with aphasia communicative opportunities with

graduate research assistants, fellow research participants and caregivers, and the children

and families served by the Sacramento Food Bank & Family Services (SFBFS).

By creating naturalistic communicative opportunities, this second foundational

principle is appropriately aligned with the Life Participation Approach to Aphasia

(LPAA; Chapey et al., 2000), which has shifted the speech-language pathologists’ focus

of treatment to client-centered goals and a subsequent “re-engagement in life” (Chapey et

22

al., 2000). The LPAA dovetails and complements adult learning theory as adults will

learn and perform optimally when the subject matter is “inherently and internally

motivating” to them (Kimbarow, 2007).

Third principle - active participation.

Lastly, in conjunction with the third component in programs shown to mitigate

isolation in seniors listed above (i.e., [c] provided a role for the seniors to be active

participants), the readers would participate in a structured orientation training that

prepared them to actively serve as an official volunteer reader. One purpose in the design

of this study was to provide an authentic rather than an illusionary or artificial volunteer

role and responsibility. As a result, the study’s participants were assured that their efforts

were part of an authentic, meaningful contribution to the community. This critical

element was based on data which found that interventions which provided social roles

produced health and well-being benefits for older people (Heaven et al., 2013).

To that end, the presentation of a short statement was planned for the participants

to stress the importance and value of their role. This statement would take place before

reading and information about the discrepancy in language exposure experienced by

children from a low SES as described by Hart and Risley (1995) would be introduced,

although specific figures would not be discussed. Additionally, the importance of

parental educational behavior would be included in this statement to participants, as well

as their role in modeling engaging reading strategies (Rindermann & Baumeister, 2015).

Hence, each of the three recommendations that are associated with positive

program outcomes for socially isolated seniors as discussed in Dickens et al. (2011) were

23

addressed and included in outlining the framework for this program. As aphasia is a risk

factor for isolation, and isolation is a risk factor for mortality, interpersonal engagement

is crucial for PWA (Holt-Lunstad et al., 2015; Vickers, 2010). For willing and interested

participants, this type of volunteer activity and community engagement are aligned with

patient-centered care using the LPAA (Chapey et al., 2000; Kimbarow, 2007).

24

Chapter 2

LITERATURE REVIEW

Several databases were used for the purpose of the literature review, including

Education Full Text, PubMed, PsycINFO, Academic Search Complete, and JSTOR.

Database were searched for peer-reviewed articles written in the last ten years using

keyword combinations which included intergenerational, children, reading, volunteer,

acquired communication disorders, reading program, adult, and aphasia. Articles were

then sorted by topic and subjects not relevant to the current study were discarded (e.g.,

religion, gender sexuality issues, familial programs, studies focusing only on children’s

gains, and programs including plants or animals). Studies which dealt with older

volunteers with no language impairments tutoring in schools were also found to have a

different focus and were therefore not analyzed further. A web-based search was also

conducted with the same parameters using Google Scholar and ASHAWire. The total

number of articles found was 4,414. Of the resulting articles, 96 were generally relevant

and 35 of them addressed the research questions more closely. Finally, a hand search was

conducted of the most relevant articles referenced by articles found in the original

database search.

The most relevant studies analyzed involved intergenerational reading activities

with typically functioning adults (Fujiwara et al., 2009; Sakurai et al., 2016; Yasunaga et

al., 2016); intergenerational activities with participants in a school setting with dementia,

as opposed to aphasia (George, 2011b, 2011a; George & Singer, 2011; Isaki & Harmon,

2015); an intergenerational event with PWA in attendance (Lane, 2016); and a case study

25

wherein a child was introduced in PWA language intervention to increase client

engagement (Mantie-Kozlowski & Smythe, 2014).

The studies found which addressed outcomes for adults and examined storybook

reading activities between neurotypical adults and typically developing children took

place in Japan, as part of the Research on Productivity through Intergenerational

Sympathy (REPRINTS) program (Fujiwara et al., 2009). Fujiwara et al. (2009) launched

REPRINTS, which involved people aged 60 and older; 67 volunteers reading picture

books to children, and 74 participants in a control group. The program began with a

three-month training seminar and continued with reading in public elementary schools

and kindergartens for 18 months. Pre and posttesting showed that volunteers who

participated in intensive intergenerational activities were more likely than controls to

maintain or improve self-rated health and social networks (Fujiwara et al., 2009). Seven

years later, Sakura et al. (2015) conducted a follow up study and found that, although

participants were more likely than the control group to stay indoors, they experienced

long-term positive effects on intellectual activity, physical functioning, and

intergenerational exchange. Yasunaga et al. (2016) conducted a review of the REPRINTS

program, which was self-sustaining and operable at the time of their review and

determined that it was based on the concept of social capital. They concluded that it was

“an effective and sustainable program for health promotion among older adults”

(Yasunaga et al., 2016).

In Cleveland, Ohio, a 5-month randomized control trial was undertaken with 15

intervention participants and a control group of 15 at The Intergenerational School (TIS)

26

(George, 2011a). Intervention consisted of hour-long volunteer sessions singing, reading

and writing in a kindergarten classroom and life-history reminisce with an older

elementary class, alternating weekly (George, 2011b). The purpose of the study was to

examine whether an intergenerational volunteering intervention could enhance quality of

life (QOL) in those with mild to moderate dementia (George, 2011a). A mixed methods

analysis was done, including qualitative data collection and coding, and quantitative

statistical analysis which was published separately, to evaluate intervention results

(George, 2011a; George & Singer, 2011). The qualitative analysis revealed numerous

themes and sub themes, including the following main themes: perceived health benefits,

sense of purpose and sense of usefulness, and relationships (George, 2011a).

Quantitatively, participants received pre and posttesting on cognitive functioning, stress,

depression, sense of purpose, and sense of usefulness (George, 2011b, 2011a). Results

showed that participants volunteering in the classrooms experienced a significant

decrease in stress based on posttest results (George & Singer, 2011). Qualitative and

quantitative findings were meaningfully and mutually supportive, specifically the

emergence of the perceived health benefits theme corresponded with the quantitative

finding of reduced stress in the intervention group (George, 2011a).

Isaki and Harmon (2015) conducted a study with six older adults with dementia-

based cognitive-communication deficits and 12 school-aged children with identified

language and reading concerns. The groups interacted for 45-minute sessions weekly for

eight weeks, with a child ultimately reading a story to the older adult with the guidance of

a graduate student (Isaki & Harmon, 2015). While the older participants’ comments

27

indicated enjoyment and enhanced QOL, and the authors noted positive changes in the

older participants’ mood and affect, no significant changes were noted on questionnaire

results (Isaki & Harmon, 2015). As a listener, the adults in this study played a more

passive role, which differentiates it from the present study.

Two additional articles are related as they involve PWA in an intergenerational

setting, however, these settings are both significantly different from the present study. In

the first, a one-hour intergenerational event was held with four PWA and 12 children

aged six and seven (Lane, 2016). The participants were arranged into groups and did

writing, hand-tracing, and talking about pictures (Lane, 2016). Participant feedback

regarding the event was positive. The second study centered around the introduction of an

intergenerational relationship to improve engagement in speech therapy with a client who

had aphasia (Mantie-Kozlowski & Smythe, 2014). It was noted that when the child joined

the session, the client “displayed more emotion.

Research Questions

Perhaps due to the specificity of this study, involving PWA and reading to low-

income children on a short-term basis, no direct models of previous studies were found.

In light of the paucity of research in this area, this exploratory study was designed to

address four research questions:

RQ1 - Does participating in an intergenerational reading program impact self-reported

QOL for PWA?

RQ2 - Does participating in an intergenerational reading program impact self-reported

levels of communication confidence?

28

RQ3 - Does participating in an intergenerational reading program achieve a degree of

self-reported satisfaction?

RQ4 - Does participating in an intergenerational reading program impact a PWA’s verbal

expression?

29

Chapter 3

METHODOLOGY

This study was developed to examine the impact of an intergenerational volunteer

reading program on PWA. Three community outreach programs in the Department of

Communication Sciences and Disorders at California State University, Sacramento

(CSUS) articulated to create a unique volunteer opportunity for PWA: (a) HEART

(Helping Each Other And Reading Together), a multigenerational literacy partnership

between Dr. Hagge’s NeuroService Alliance and Dr. Roseberry’s Love*Talk *Read

program that supports literacy across the lifespan and (b) Dr. Pieretti’s Sacramento State

Literacy Connection, which sponsors a Service Learning Opportunity called “Storytime”.

Storytime provides weekly literacy encouragement through interactive story book reading

and associated craft activities to low income children and their families participating in

local Sacramento Food Bank & Family Services (SFBFS) Parent Education Services.

This study was designed to provide an avenue for PWA to become official volunteers in

the Sacramento State Literacy Connection program and read purposefully selected

storybooks to under-resourced children at SFBFS, thereby increasing meaningful

participation.

The research team consisted of a credentialed supervising speech-language

pathologist, a second-year graduate student primary investigator, and two male and three

female first-year graduate students as research assistants. A female undergraduate student

also assisted as a liaison at the SFBFS to ensure participants had communicative access at

all times onsite. All team members had received training as communication partners for

30

persons with aphasia and had experience interacting successfully with PWA.

Additionally, all team members held completion certificates for a course in human

subjects research through the Collaborative Institutional Training Initiative under

requirements set by California State University, Sacramento.

Participants

This study used a convenience sample. Recruitment flyers were created using

literature-based aphasia friendly modifications (i.e., large, san serif font, clear images,

and a reduced length of utterance) and were approved by the CSUS Institutional Review

Board (Herbert, 2012). Flyers were presented to possible participants with an explanation

by a graduate student who had previously received communication partner training to

ensure clear understanding.

Three participants were recruited from members of the CSUS Communication

Sciences and Disorders (CSAD) NeuroService Alliance, a collection of life participation

approach programs for adults with acquired communication disorders. Inclusion criteria

included a self-reported diagnosis of aphasia, the desire to participate as a volunteer in a

community-based children’s reading program, and access to transportation. Members

were not considered for research if they demonstrated an inability to converse about

familiar subjects due to profound or global aphasia.

The participants were three females with a mean age of 52 years, living

independently (alone or with a spouse), and all were ambulatory. All participants were

able to communicate general concepts verbally and/or nonverbally using facial

expressions, verbalizations, and gestures. Upon presentation of the flyer, all showed

31

positive interest in participating. Characteristics of all participants are presented in Table

1, see below.

Table 1

Demographics

Characteristics Participants (n=3)

Age 57, 62, 37

Mean Age 52

Aphasia Severity Score (BDAE) 1, 3, 5

Gender

Female 3

Male 0

Other 0

Education Level

High School 0

College Graduate, BA or BS 3

Marital Status

Single 1

Married 2

Divorced 0

Widowed 0

Employment Status

Employed 0

Unemployed 1

Retired 2

Homemaker 0

Student 0

Measures

Pre and posttesting were conducted by graduate students to establish a baseline

and measure possible effects of participation using several tools. The primary investigator

and supervising SLP/co-investigator assigned the aphasia quotient from the Boston

Aphasia Battery (Goodglass, Kaplan, & Barresi, 2001) to describe the PWA’s

communication at the outset of the study. A comprehensive, aphasia-friendly

demographic data questionnaire was administered prior to pretesting measures.

32

Prior to the reading sessions, the Quality of Communication Life Scale (QCL)

(Paul et al., 2004) and the Communication Confidence Rating Scale for Aphasia

(CCRSA) (Babbitt et al., 2011; Cherney et al., 2011) were administered to obtain self-

reported subjective participant perspectives regarding his/her own communication skills.

The QCL was designed to validly and reliably measure the impact of an individual’s

communication disorder on his/her relationships and participation (Paul et al., 2004).

Scores for the QCL are based on a Likert scale of agreement with a range of 1-5. A score

of 1 corresponds to no while a score of 5 corresponds to yes. The CCRSA was developed

to assess confidence in the communication of persons with aphasia across a variety of

contexts (Babbitt et al., 2011; Cherney et al., 2011). Scores for the CCRSA are based on

a Likert scale of agreement with a range of 0-100. A score of 0 indicates a not confident

response, a score of 50 indicates a moderately confident response, and a score of 100

signifies the rater is very confident in regard to the option given.

In addition, a language sample (with an oral prompt) and a verbal picture

description task (with an image) from the Aphasia Diagnostic Profiles (Helm-Estabrooks,

1992) were dictated to examine the participants’ verbal output before the reading sessions

were conducted. The language sample involved a narrative description of the memory of

President Kennedy. During the verbal picture description task, participants were shown

an image set in a grocery store with several unusual details (e.g., a child dropping items, a

butcher with a large bandage, etc.).

After the intergenerational reading sessions, the QCL and the CCRSA were

readministered to evaluate any changes in participant self-reported perspectives.

33

Language samples using the same oral prompt and the verbal description task using a

picture were also conducted at the conclusion of the study to examine any changes in

verbal output. In addition, an original aphasia-friendly social validation/satisfaction scale

designed to measure the volunteer experience at the conclusion of the study was filled out

by each participant (Clary et al., 1998). The response options for the social

validation/satisfaction survey represented a scale of agreement, and ranged across five

domains, including strongly agree, agree, undecided, disagree, and strongly disagree. All

participants reviewed each measure with the assistance of two graduate students who had

been previously trained as communication partners to ensure the participant’s clear

understanding of all administered measures.

To ensure all steps were completed accurately, a system was established to track

progress for each participant. As part of this system, a checklist of required actions was

designed with spaces to be signed and dated at the completion of each step or measure. A

notes section for every step or measure was also included to provide the research team

with the option of recorded relevant notes such as the partial completion of a step, an

undue difficulty with a measure, etc. A folder was created for each participant that

included the assigned code, a blank inventory checklist and blank copies of each measure

(two copies were made for pre and post measures).

Procedures

Preparation.

As a preparatory step, a collaborative meeting was held at the SFBFS to inform

the staff of this study and to raise their awareness of aphasia. Once administration had

34

given permission and the staff had expressed their willingness for the study to take place,

it was necessary to determine the requisite steps and schedule the intergenerational

reading sessions. Additional clarification email messages were used to finalize all

agreements. As a result, several agreed-upon steps were completed as part of the

requirements for volunteering with the SFBFS.

It was ultimately determined that the intergenerational reading sessions would

coincide with previously scheduled Literacy Connection Storytime meetings to ensure

that the craft activities would be planned in advance and completed without undue

pressure on the research team and participants. This setting created a potential interface

between PWA and a rotation of undergraduate students without any prior experience with

PWA. Consequently, the decision was made to create a naturalistic environment in which

Literacy Connection Storytime coordinators (students who had been trained as

communication partners for PWA) and the undergraduate liaison would model

appropriate strategies. These students were trained communication partners who were

present and available at all times to handle any potential miscommunication between a

participant and any potential communication partner. No additional modifications were

made to the environment, ensuring an authentic (rather than artificially manufactured or

scaffolded) community volunteer opportunity.

Prerequisites, pretesting, and orientation steps were conducted over the course of

three three-hour meetings which took place the week of October 8 to October 12, 2018.

Breaks with light refreshments were offered midway each day. Intervention was carried

35

out from October 26th, 2018 until November 30, 2018. Posttesting was completed in one

two-hour meeting with a break with refreshments on December 3, 2018.

To begin, a brief orientation to describe the procedures of the intervention was

completed by the primary investigator (PI). The orientation was held in a quiet room, and

the speaker used literature-based communication techniques including a slow speaking

pace and the use of shortened utterances and pauses, along with simple, direct vocabulary

and syntax. During this initial orientation, an overview of the structure of the intervention

was provided. As previously discussed above, the importance of the current need for

access to literature for under-resourced and at-risk youth was highlighted to ensure that

the participants understood their participation was meaningful and not simply a contrived

exercise or activity. Participants, caregivers, and research assistants were in attendance

with the exception of one participant and her caregiver, who were unable to attend and

received the orientation, given with the same parameters, in a personalized setting.

Prerequisites.

A prerequisite for human subjects research was adherence to standards of the

Institutional Review Board (IRB) of CSUS. Therefore, each participant was presented

with the outline of the study and informed of their informed consent rights during

participation both verbally and in writing. They were asked to sign if they agreed and

received a copy to take with them. Caregivers were present for all steps and explanations.

Two graduate research assistants aided participants in reviewing the IRB documents

before signatures were obtained. In this manner, written informed consent was obtained

from all participants prior to the study with the assistance of graduate research assistants.

36

IRB approval of the study was granted in accordance with the policy of California State

University, Sacramento.

Prerequisites for the SFBFS were also completed with the assistance of graduate

research assistants including a Live Scan background check. This clearance was obtained

at an off-site facility and paid for by the PI. To aid in this step, the PI called the location

recommended by the SFBFS prior to the participant’s arrival to ensure a smooth

interaction. A Safe Haven online module consisting of written materials, videos, and

quizzes was also required to assist participants in identifying signs of child abuse.

Participants then filled out a volunteer form as part of the SFBFS protocol. For the

purposes of this study, the standard orientation completed by SFBFS volunteers was

waived, and a special event form was signed and used in its place with the help of the

undergraduate student acting as liaison who was present at the SFBFS.

Parameters for book selection included short children’s books (i.e., non-chapter

books) with large illustrations that the PWA felt comfortable reading. After all formal

prerequisites were completed, in an attempt to promote autonomy and choice, the PI and

supervising SLP/co-investigator chose a selection of thirty to forty books for the

participants to choose from. The participants made the final book selection which they

read to the children. Each participant was reminded that their communicative

performance would not be corrected or penalized in any way during book reading. This

step was designed to ensure the participants were focused on having positive interactions

while reading to the children and not on their possible linguistic and/or motoric errors.

37

The importance of access and exposure to literature for the at-risk children of the SFBFS

were also briefly reiterated to ensure meaningfulness of participation.

A practice session reading the book with graduate research assistants was held for

each participant. This included the option of having the story read by a graduate student

and recorded for later reference during at-home practice. Participants were encouraged to

ask questions and indicate for the children to look at the pictures, while also using

animated facial expressions to engage the children while reading. Participants were

encouraged to use these techniques to improve listener engagement during their own

practice sessions. The practice session length was determined by each participant. When

they felt they had a foundation for reading the story, they informed the research assistant

and commenced practicing at home.

An in-home independent practice schedule of reading was established to aid with

reading fluency. Participants were encouraged to practice twice a week for twenty

minutes per session over a period of four weeks An aphasia-friendly form was designed

to aid participants in recording their practice sessions. Following this, the PWA and their

caregivers were informed of the dates of scheduled sessions to read storybooks at the

SFBFS.

Aphasia-friendly informational flyers were also designed and distributed to

participants and their caregivers. These flyers indicated the address and directions to the

SFBFS premises, the contact information for SFBFS staff assisting with the program, and

the contact information for the undergraduate liaison at the SFBFS. Introductions

between the participants and undergraduate liaison were made in person prior to arrival at

38

the SFBFS to ensure participant security and to decrease any potential anxiety. The

SFBFS is housed in several buildings, so clearly marked images of the specified building

and appropriate entrance were included in the flyer as well.

Intervention

During all of the reading sessions, children were seated on a carpeted floor facing

readers who sat in chairs. Parents of the children sat behind the children in chairs.

Literacy Connection Storytime students sat in various locations (including on the floor

facing the children or on the floor facing readers) and moved about so as to be most

effective in directing the group when appropriate. The reading of each book lasted

approximately five minutes as planned due to potentially limited attention on the part of

the young children.

Day 1.

The first reading session took place after a delay caused by a scheduling error at

the food bank. Eventually, seven children were brought in to participate in Storytime.

Participant C was unable to attend due to a trip which had been scheduled prior to the

initiation of the study.

Participant B had dressed in clothing and jewelry to match the topic of her book

(cats). She read her book first while asking questions to ensure the children were

interested. She was able to rapidly self-correct a few minor errors.

Participant A had a service dog and had chosen a book with many images of dogs.

She shared her book enthusiastically and used laughter, pitch, and facial expression to

39

engage her listeners. The undergraduate liaison helped her to turn pages. Following the

session, participant A’s caregiver requested less assistance for future readings.

As expected, the children demonstrated varying levels of engagement in the books

and with readers throughout the session. Literacy Connection Storytime coordinators and

students were also present and followed the book reading with a song and an aligned

interactive craft activity.

Day 2.

The second reading session occurred on schedule, with eight children in

attendance. Participant B had chosen to read different books each session due to having a

higher level of fluency than the other two participants. She read first and successfully

completed her book while asking questions of the children. It should be noted that she

attended and presented her book to the children despite experiencing a significant

personal loss the previous week. The Literacy Connection Storytime students then sang a

song and read a short book to the children.

Participant C followed with her book. While reading she asked a student for

assistance with a word. She used pitch variation and gestures to successfully engage the

audience. Afterward she said she felt nervous, but she also said that she had fun and

expressed that it had been a positive experience. Literacy Connection Storytime students

then sang a song and read the final book of the day, which was about dogs, with less

assistance than previously provided. She used a variety of engaging facial expressions to

which the children responded positively.

40

Day 3.

The third reading session was held just before the SFBFS was closed for two

weeks for holiday events. It was attended by twenty-five children. Participant B again

dressed and wore jewelry related to the theme of her newly chosen book (Halloween).

She read the book and utilized the strategy of asking questions at various times during her

book. Participant C also read a new book, which she felt was more interesting, and self-

corrected two errors. She successfully used her voice and expression to capture the

interest of the children.

Participant A attended with her service dog and read her book about dogs next.

While reading, she motioned for the children to come up to the front. This request,

however, was unplanned, unanticipated, and led to some confusion among the children

and coordinators. Participant B was also concerned because several children were then

unable to see the book.

There were many children during this session, which may have led to more

distractions overall. Despite the greater number of children and families in attendance,

the majority of them remained highly engaged with each reader and all books presented

throughout the entirety of the session. Literacy Connection Storytime students sang songs

in between readers and supervised the associated craft activity.

Day 4.

The final scheduled reading session was attended by ten children. Participant C

had chosen to read the book she had presented in the previous session. She used voice

inflection and facial expressions to successfully maintain the interest of audience

41

members. Participant C’s book reading was followed by the Literacy Connection

Storytime song.

Participant B then read a new book which she had chosen while also asking

questions to involve the audience. This was a longer book than she had read previously.

Near the end of this book, the children became restless but were re-engaged by the song

performed by Literacy Connection Storytime students.

Participant A then shared her book and again requested that the children come up

to the front. Literacy Connection Storytime students aided children to be seated so all

children could see. Literacy Connection Storytime students also sang a song, read a short

book, and led the craft activity after participant A had finished.

Although all participants were welcomed and invited to participate in the craft

activity each session, and before the reading sessions had begun, they consistently

declined to do so. At the conclusion of the final day, participant A left directly after

reading her book. Participants B and C stayed behind and spoke to each other at length.

They also spoke to the family members at the SFBFS and the undergraduate liaison.

Some caregivers had also attended regularly and engaged with the participants. No

identified miscommunication between the PWA and the rotation of untrained

undergraduate Literacy Connection Storytime students occurred over the course of the

study.

42

Chapter 4

RESULTS

Quality of Communication Life (QCL)

Data collected during the administration of pre and posttesting were analyzed

using descriptive statistics due to the small sample size. As part of the development of the

QCL, a preceding question was added to inquire about the person’s general state at the

time of administration (i.e., “Is today an especially good, average, or especially bad day

for you?”) (Paul et al., 2004). Responses to these questions have been included in results,

as well as the results to a final question not scored as part of the QCL, item number 18

(i.e., “In general, my quality of life is good.”). The QCL is scored on a 1-5 scale with

simple images to augment the significance of numerical values. Responses are made by

drawing a line on the scale.

During the pretest administration, participant A responded that she was having an

“average” day, and her mean score was 4. Her response to the unscored general “quality

of life” question was 4. During posttesting, participant A was having an “especially bad”

day. Her mean score was 3.0625. This score indicated a difference in means of -0.9375.

Her response to the unscored general “quality of life” question was 4, with no difference

from pretesting.

Participant B indicated that she was having an “especially good” day during pre

and posttesting. During the pretest administration, her mean score on the QCL was 4.25.

Posttesting on the QCL indicated a mean score of 4.4375, an increase of .1875. Her

response to the general “quality of life” question was 5 during pre and posttesting.

43

Participant C responded that she was having an “average” day during pretesting

and an “especially good” day the day of posttest administration. Her scores resulting from

pre and posttesting were 4.375 and 4.4375, respectively. These scores indicate an

increase of .0625. Her response to the general “quality of life question” was 5 on both pre

and posttesting. Full results of the QCL are shown in Table 2, below:

Table 2

Summary of Scores for Quality of Communication Life Scale

Parameter Pretreatment

Score

Posttreatment

Score

Difference in

Scores

Participant A

Is today an especially good,

average, or especially bad

day for you?

Average Especially bad

I like to talk with people. 4 4 0

It’s easy for me to

communicate. 3 3 0

My role in the family is the

same. 2 3 1

I like myself. 4 4 0

I meet the communication

needs of my job or school. N/A N/A

I stay in touch with family

and friends. 3 3 0

People include me in

conversations. 4 3 -1

I follow news, sport, and

stories on TV/movies. 4 4 0

I use the telephone. 5 3 -2

I see the funny things in life. 5 3 -2

People understand me when I

talk. 4 3 -1

I keep trying when people

don’t understand me. 3 2 -1

I make my own decisions. 5 3 -2

44

Parameter Pretreatment

Score

Posttreatment

Score

Difference in

Scores

I am confident that I can

communicate. 4 3 -1

I get out of the house and do

things. 4 2 -2

I have household

responsibilities. 5 3 -2

I speak for myself. 5 3 -2

Mean Score 4 3.0625 -0.9375

In general, my quality of life

is good. 4 4 0

Participant B

Is today an especially good,

average, or especially bad

day for you?

Especially

good

Especially

good

I like to talk with people. 5 5 0

It’s easy for me to

communicate. 3 3 0

My role in the family is the

same. 4 4 0

I like myself. 5 5 0

I meet the communication

needs of my job or school. N/A N/A

I stay in touch with family

and friends. 5 5 0

People include me in

conversations. 4 5 1

I follow news, sport, and

stories on TV/movies. 3 2 -1

I use the telephone. 5 5 0

I see the funny things in life. 4 4 0

People understand me when I

talk. 3 4 1

I keep trying when people

don’t understand me. 4 5 1

I make my own decisions. 5 5 0

I am confident that I can

communicate. 4 4 0

45

Parameter Pretreatment

Score

Posttreatment

Score

Difference in

Scores

I get out of the house and do

things. 4 5 1

I have household

responsibilities. 5 5 0

I speak for myself. 5 5 0

Mean Score 4.25 4.4375 0.1875

In general, my quality of life

is good. 5 5 0

Participant C

Is today an especially good,

average, or especially bad

day for you?

Average Especially

good

I like to talk with people. 5 5 0

It’s easy for me to

communicate. 4 4 0

My role in the family is the

same. 3 3 0

I like myself. 5 4 -1

I meet the communication

needs of my job or school. N/A N/A

I stay in touch with family

and friends. 4 3 -1

People include me in

conversations. 5 5 0

I follow news, sport, and

stories on TV/movies. 5 5 0

I use the telephone. 3 5 2

I see the funny things in life. 5 5 0

People understand me when I

talk. 4 4 0

I keep trying when people

don’t understand me. 4 4 0

I make my own decisions. 4 4 0

I am confident that I can

communicate. 4 5 1

I get out of the house and do

things. 5 5 0

I have household

responsibilities. 5 5 0

46

Parameter Pretreatment

Score

Posttreatment

Score

Difference in

Scores

I speak for myself. 5 5 0

Mean Score 4.375 4.4375 0.0625

In general, my quality of life

is good. 5 5 0

Note: Scores are based on a Likert scale of agreement with a range of 1-5. Score of 1 = No; score of 5 =

Yes.

Communication Confidence Rating Scale for Aphasia (CCRSA)

The CCRSA is based on a scale of 0-100. Scores were indicated in writing by

participants and results were analyzed using descriptive statistics. Participant A’s mean

score upon pretest was 60 and 38 upon posttest, a mean decrease of 21. Participant B’s

mean pretest score was 77. Her posttest score was 82.5, an increase of 5.5. During pretest

administration, participant C’s score was 82 and her posttest score of 87 indicated an

increase of 5. For a complete view of CCRSA results, see Table 3.

Table 3

Summary of Scores for Communication Confidence Rating Scale for Aphasia

(CCRSA)

Confidence Parameter Pretreatment

Score

Posttreatment

Score

Difference

in Scores

Participant A

Talk with people 40 40 0

Stay in touch with family and

friends

70 40 -30

Follow news and sports on TV 0 50 50

Follow movies on TV or in a

theater

80 50 -30

Speak on the telephone 90 40 -40

People understand you when you

talk

60 40 -20

People include you in

conversations

60 20 -40

47

Your ability to speak for yourself 100 50 -50

You can make your own decisions 100 50 -50

Participate in discussions about

your finances

0 0 0

Mean Score 60 38 -21

Participant B

Talk with people 70 80 10

Stay in touch with family and

friends

75 100 25

Follow news and sports on TV 40 40 0

Follow movies on TV or in a

theater

70 60 -10

Speak on the telephone 80 90 10

People understand you when you

talk

75 80 5

People include you in

conversations

100 100 0

Your ability to speak for yourself 90 85 -5

You can make your own decisions 100 100 0

Participate in discussions about

your finances

70 90 20

Mean Score 77 82.5 5.5

Participant C

Talk with people 80 80 0

Stay in touch with family and

friends

70 80 10

Follow news and sports on TV 70 100 30

Follow movies on TV or in a

theater

100 100 0

Speak on the telephone 90 80 -10

People understand you when you

talk

90 90 0

People include you in

conversations

90 90 0

Your ability to speak for yourself 90 90 0

You can make your own decisions 90 80 -10

48

Participate in discussions about

your finances

50 80 30

Mean Score 82 87 5

Note: Scores are based on a Likert scale indicating level of confidence with a range of 0-100. Score of 0 =

Not confident. Score of 50 = Moderately confident. Score of 100 = Very Confident.

Language Sample and Verbal Description Task

Language samples and verbal description tasks were analyzed quantitatively by

number of words used and average phrase length using the longest three phrases. The

efficiency of communicative output was also evaluated by the correct number of

information units. An index of wordiness (i.e., the number of words a PWA uses to

verbally express a concept or information) was calculated for all verbal output tasks. All

results of verbal output measures are summarized in Table 4, see below.

On the language sample obtained by pretesting, Participant A’s average phrase

length was 3.3. Her posttesting average phrase length was 1. Index of wordiness figures

for pretesting and posttesting were 1.67 and 1, respectively. For the verbal description

task, participant A’s average phrase length was 2.7 for pretesting and 1 during the

posttest. Her index of wordiness was 2.7 during pretesting and 1 upon posttesting. Due to

scarcity of verbal output, average phrase length was computed using two phrases as

opposed to three when necessary in order to ensure pre and post data would provide valid

information.

Participant B’s language sample before intervention used an average phrase

length of 16.3 and post intervention used an average phrase length of 17. The index of

wordiness resulting from pre and post assessment were 3.75 and 2.625, respectively.

Results of her picture description task indicated an average phrase length of 27 prior to

49

intervention, and 19 following intervention. Index of wordiness figures for this task

decreased from 5.975 to 3.47.

Participant C used an average phrase length of 7.3 words in her language sample

before intervention. During posttesting, her average phrase length was 10.6. Her index of

wordiness was 4.875 during pretest and 3.692 during posttesting for the language sample.

For the verbal description task, her pretest average phrase length was 16.3 and 10 during

posttesting. Her pretest index of wordiness was 6.636 and decreased to 4.15 during

posttesting.

Table 4

Summary of Verbal Output Task Results

Parameter Pretreatment

Score

Posttreatment

Score

Difference

in Scores

Participant A

1. Language Sample

Total number of words 10 2 8

Average phrase length 3.3 1

Total number of correct

information units

6 2

Index of wordiness 1.67 1 -0.67

2. Verbal picture description

Total number of words 11 1 10

Average phrase length 2.7 5

Total number of correct

information units

5 5

Index of wordiness 2.2 1 -1.2

Participant B

1. Language Sample

Total number of words 135 105 30

Average phrase length 16.3 17

50

Total number of correct

information units

36 40

Index of wordiness 3.75 2.625 -1.125

2. Verbal picture description

Total number of words 239 191 48

Average phrase length 27 19

Total number of correct

information units

40 55

Index of wordiness 5.975 3.47 -2.505

Participant C

Language Sample

Total number of words 39 48 -9

Average phrase length 7.3 10.6

Total number of correct

information units

8 13

Index of wordiness 4.875 3.692 -1.183

Verbal picture description

Total number of words 73 54 19

Average phrase length 16.3 10

Total number of correct

information units

11 13

Index of wordiness 6.636 4.15 -2.486

Social Validation/Satisfaction Survey

Social validation/satisfaction surveys were conducted at the conclusion of the

study, as planned. Responses varied by participant. A total of 19 strongly agree, 8 agree,

1 undecided, and 2 disagree responses were obtained. There were no strongly disagree

responses. Survey results are summarized in Table 5.

51

Table 5

Summary of Responses of Social Validation/Satisfaction Survey

Parameter Strongly

Agree

Agree Undecided Disagree Strongly

Disagree

1. Speaking in front of

others is easier

since I started

volunteering with

the HEART

program.

1 2

2. I have gained new

skills from

volunteering that I

can use in other

areas of my life.

3

3. I feel a sense of

accomplishment

when I volunteer

with the HEART

program.

3

4. I have increased my

social network

(friends,

connections with

new people)

because of my

volunteer

experience with the

HEART program.

3

5. My volunteer

experience has

increased my self-

confidence.

2 1

52

6. I may be willing to

continue

volunteering as a

reader for the

HEART program.

2 1

7. After I became a

volunteer, I

increased my

involvement with

other opportunities

in the community.

1 1 1

8. I would like to

explore different

volunteer

opportunities in the

community.

1 1

1

9. I would

recommend

volunteering with

the HEART

program to others.

2 1

10. Overall, I am

satisfied with my

volunteer

experience with the

HEART program.

2 1

Totals 19 8 1 2 0

Reading practice records.

Reading practice logs were submitted by participants B and C. Participant B

followed the scheduled regimen of three fifteen-minute sessions, and this was reflected in

her records. Participant C practiced one time during the first week, four times during the

53

second week, two times during the third week, and did not submit a record sheet for the

fourth week.

54

Chapter 5

DISCUSSION

Pre and posttest differential scores on the QCL and CCRSA reflected similar

changes across participants. Upon posttesting, Participant A’s scores on the QCL and

CCRSA were marked by a distinct downward trend while the other participants saw very

slight increases. Participant A did note that she was having an “especially bad” day on the

QCL on the day of posttesting, and this could have had a negative impact on her

communicative confidence and overall responses. In contrast, participants B and C both

rated slightly higher during post assessment of these measures.

Results of language sample analysis showed that in general, fewer words were

used for all tasks during posttesting. However, in all cases the lower index of wordiness

indicated greater efficiency of language use. This could have been the result of several

factors including greater comfort with the research assistants or greater familiarity with

the surroundings or tasks. It could also be considered that increased exposure to language

in several novel environments and with new communication partners could have aided

the participants to complete the tasks with a more streamlined use of language. The

unfamiliar situations and communication partners could have necessitated participants’

increased use of purposeful language.

Results of the social satisfaction/validation survey were generally positive for all

items and all participants. This is notable in view of the fact that participants all had to

focus and exert concentrated effort into completing all steps while working under

increased communication demands. Despite these efforts, all participants responded that

55

they strongly agreed with the following statements: “I have gained new skills from

volunteering that I can use in other areas of my life”; “I feel a sense of accomplishment

when I volunteer with the HEART program”; “I have increased my social network

(friends, connections with new people) because of my volunteer experience with the

HEART program.” These statements suggest that increased community participation

resulted in positive outcomes for all participants.

Although the provided reading practice sheet was not submitted from participant

A to the researchers, her family members reported on several occasions that she was

reading to the children in her family. This was a novel occurrence which had never

occurred prior to the study in which participant A was reading her chosen book to

children who were seated in a semicircle around her during a family gathering. Per

participant A’s sister, family members were pleased to see her increased participation

with their family and indicated that it was meaningful for them.

Participant A and C’s family members attended the reading sessions. They sat

together on the last session and communicated to the PI that their family members with

aphasia looked forward to reading each week. Participant C’s spouse stated that she

volunteered often before experiencing a stroke resulting in aphasia. According to her

caregiver, she had helped those recovering from substance abuse and this had been an

important activity for her. She had not been able to volunteer in the time between her

stroke and this study.

56

Limitations

This was an exploratory study and did not employ a control group or a

randomization system for increased validity and reliability of results. Limitations of this

study included the use of a small convenience sample of three participants. The

participants also engaged in a limited quantity of intervention for a short duration.

Previous inexperience with children could have played a role in their personal

levels of confidence and sustainable interactions with children. Participants A and B had

limited experience with children. Participant C was the only participant to have her own

children. She did not give unplanned or unexpected directions to the children and it was

evident that she was not perturbed or concerned by their behavior when they were

distracted after being given conflicting directions.

The pre and post assessment schedules were closely scheduled together. If there

had been more time, the PI could have distributed the study’s activities at a more relaxed

or leisurely pace. The participants may have enjoyed the process even more than was

reported, or may have positively impacted their post assessment scores.

During the study, participants with differing levels of communication were

grouped together, potentially resulting in some feelings of self-doubt or frustration.

Participant A held the lowest aphasia quotient and her family members observed that

other participants displayed greater fluency. As she was working with these peers and

typical communication partners for the duration of the study, it is possible that she could

have had a negative emotional response to the presence and severity of her own aphasia.

57

The rigor required to participate in the program may have created fatigue for

study participants. Requirements and a relatively strict timeline could have also created

difficulty for the participants. In short, participants listened and agreed to participate in

the study, planned and scheduled meeting times (with the assistance of caregivers),

completed a battery of measures in a new environment with unfamiliar communication

partners. They also chose and practiced reading a book, followed directions to the

SFBFS, read a book to an unfamiliar audience, then scheduled and completed posttesting

measures. Due to the group format, all timelines and meetings required agreed upon

attendance and the progression through numerous steps.

Future Recommendations

Recommendations for future research in an intergenerational reading program

with PWA would include the implementation of a rotating schedule to reduce fatigue.

Indeed, any challenging or tightly scheduled volunteer work or activity could create some

level of fatigue in participants, especially those with additional cognitive or

communicative demands. Establishing a less rigorous schedule would potentially increase

participant comfort and confidence across the process of community reintegration.

All participants were female, indicating that other avenues should be explored to

determine if other avenues for participation would appeal more broadly to men as well as

women with aphasia. Additional and diverse options for participation would provide

increased likelihood of satisfaction across this extremely heterogeneous population. It

could also provide for greater numbers of participants and the opportunity for larger

numbers of PWA to engage with each other in novel settings. Although outside of the

58

scope of this study, additional paths to participation as a volunteer in the community

could offer experiences which could take advantage of the background, knowledge base,

and interests of an increased number of PWA.

Creating volunteer groups of PWA with similar functional communication levels

may decrease negative emotional outcomes and frustration for participants. While this

may not always be possible, it should be considered. Additional communicative support

should be prepared in advance and be offered and/or provided for all group members with

greater impairments.

Due to experience and general familiarity with all participants, comprehensive

language assessments were not conducted. However, any program including an

unfamiliar PWA should consider a formal, informal, or combined approach to assessment

involving all language modalities to thoroughly inform the PI of the participant’s

communicative residual abilities. With this information, the PI could provide appropriate

communicative support. Finally, the research team would have interviewed each

participant to discover his/her most helpful strategies in light of the fact that PWA are an

extremely heterogeneous population.

Conclusion

Results of posttesting on the QCL and CCRSA were mixed but followed a pattern

unique to each participant. On the day of posttesting, participant A expressed that she was

having an “especially bad day” and a downward trend was noticed in her results on these

measures. Participants B and C had slight increases in scores across both measures upon

posttesting. Results of post intervention language samples indicated the use of fewer

59

words but greater efficiency in verbal expression for all participants in both narrative and

verbal description tasks. Survey results were positive for all participants and indicated a

meaningful and productive experience. Spontaneous, volitional family member reports

were also positive.

CSUS Faculty members Dr. Hagge of NeuroService Alliance and Dr. Pieretti of

the Sacramento State Literacy Connection worked to continue the collaboration which

founded this intergenerational reading program. This created a pathway for PWA to

participate in the community. Participants A and B of this study chose to continue their

involvement with the SFBFS on an immediate basis. Participant C asked to be included

in future plans but was expecting a grandchild in the near future. In preparation of the

child, participant C chose to address reading children’s books in her individual therapy

and progressed to reading books with significantly more words and content.

The lived experience of aphasia is difficult to qualify, quantify, and may indeed

vary daily, as indicated by the initial question on the QCL. However, the need for

communicative access and avenues for participation as a volunteer in the community

does not have a sustainable solution without raised awareness on the part of society in

general, communicative supports, and advocacy for PWA. This intergenerational reading

program required forethought, planning, and time. However, it strongly suggests that it is

possible to create a real-world path to meaningful participation for individuals living with

aphasia.

60

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