Virginia Commonwealth University

VCU Scholars Compass

Theses and Dissertations Graduate School

2015

Relieving Post-stroke Fatigue Using a Group-based Educational

Training Approach
Catherine E. Emery
Virginia Commonwealth University

Follow this and additional works at: https://scholarscompass.vcu.edu/etd

Part of the Occupational Therapy Commons

© The Author

Downloaded from
https://scholarscompass.vcu.edu/etd/3875

This Dissertation is brought to you for free and open access by the Graduate School at VCU Scholars Compass. It
has been accepted for inclusion in Theses and Dissertations by an authorized administrator of VCU Scholars
Compass. For more information, please contact [email protected].
© Catherine Emery (nee Emenheiser) 2015
All Rights Reserved
 Relieving Post-Stroke Fatigue Using a Group-based Educational Training Approach

A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of
Philosophy in Health Related Sciences with a concentration in Occupational Therapy at Virginia
Commonwealth University.

by

Catherine Elizabeth Emery (nee Emenheiser)

Masters of Science Boston University 1989
Bachelor of Science Albright College 1983

Director: Tony Gentry, PhD, OTR/L

Assistant Professor, Occupational Therapy Department

Virginia Commonwealth University

Richmond, Virginia
April 2015
 ii

Acknowledgements

I want to thank my committee for their steadfast guidance, encouragement, and overall

support of this project through its completion. It has been an extraordinary journey and I am

glad to have had this group to academically challenge me to always strive for better.

Specifically, I want to thank my academic and dissertation advisor, Dr. Tony Gentry.

From the beginning, he has shared my goal for a project that would have an impact on the lives

of our clients in meaningful ways. His calm demeanor guided me to finding an important topic

and his sense of humor helped sustain me through the unexpected twists and turns that

occurred along the way. He showed tireless dedication to refining my work showcasing its

meaning while also pointing the way to how this would evolve in my research future.

This research idea would not have taken form without early guidance from Dr. Al

Copolillo. He began the effort to help me hone a topic which clarified my plans. As Chair of the

Occupational Therapy Department at Virginia Commonwealth University, his formative support

of my advisor was frequently noted. Much of his input was behind-the-scenes from me but that

did not lessen its impact as did his consistent encouragement.

Dr. James Cotter, whose overall support of the PhD Program at VCU, the memorable

2008 Cohort, and my individual academic growth was greatly appreciated. His humor and light-

hearted approach to teaching and learning were touchstones for me during my coursework and

dissertation.
 iii

I also thank Dr. Neil Penny for being my mentor and friend through this long process. In

his role as the Chair of the Occupational Therapy Department at Alvernia University, I am

deeply grateful for the supervisory support of my completion of this program including travel to

classes, adjusted teaching schedules to provide dedicated work time, and protection of this as a

priority despite the changing needs and demands of academia. That support made achieving

tenure even possible while simultaneously engaged in my doctoral program.

I also want to thank Dr. Kayla Riegel, my Research Assistant. She shares my enthusiasm

for working with older clients as well as my belief in the “rocket science of everyday activity

participation”. She stuck the course through the many months of data collection and

championed my success at every step.

I want to express heartfelt thanks to the administration and staff of Garden Spot Village

and Phoebe-Devitt Retirement Communities. Without their faith in me and support of research

to benefit the people they serve, I would not have met the wonderful people who became my

participants much less had a chance of testing my idea. They became an “invisible” research

support team with their efforts to locate and encourage participation of the residents.

As to those participants, thank you. You were all such wonderful people that I almost

hated for the groups to end because I valued our weekly interactions so much. You inspire me

with your daily efforts. Yet you made time to not just attend groups but to actively participate

and to show support of my success with the PhD at every turn. I truly could not have

accomplished this without you.

Last but not least, I thank my family and friends who supported my efforts and never

wavered in their faith that it would all work out in the end. A special thank you to my brother,
 iv

Ben, who read each word and offered essential feedback; and my sister, Elsie, who always

checked in on me and offered encouraging words- even if I bit back! Thanks to many friends

and colleagues who encouraged me on this journey and with each milestone to completion.

And, ever needful of the minds of others (Ferell), I thank the 2008 Cohort for sharing this

journey at a medium pace; all day, every day!

 v

Table of Contents

Acknowledgements …………………………………………………………………………………………………………….…… ii

Table of Contents …………………………………………………………………………………………………………………..… v

List of Tables ………………………………………………………………………………………………………………………….... x

List of Figures ………………………………………………………………………………………………………………………….. xi

Abstract …………………………………………………………………………………………………………………………………. xii

Chapter One: Introduction ………………………………………………………………………………………………………. 1

The Problem of Post-Stroke Fatigue …………………………………………………………………………..... 2

Physical Rehabilitation Theory in the Management of Post-Stroke Fatigue ………………..… 6

Purpose Statement ………………………………………………………………………………………………………. 8

Research Questions ……………………………………………………………………………………………………… 8

Rationale for the Study ………………………………………………………………………..…..………………….. 9

Summary ……………………………………………………………………………………………….….……………….… 9

Chapter Two: Review of the Literature …………………………………………………………………….……………. 11

Introduction ………………………………………………………………………………………………………………. 11

The Evidence for Post-Stroke Fatigue Management Therapies ………………………………….. 12

Research identifying the problem ………………………………………………………………….. 12

Interventions that Address Post-Stroke Fatigue …………………………………………………………. 18

Pharmacological approaches …………………………………………………………………………. 18

 vi

Rehabilitation therapy approaches ………………………………………………………………… 19

The Evidence for Psychological Approaches to Fatigue Management in Physical

Disability other than Stroke ……………………………………………………………………….….. 23

The Evidence for Key Components of a Post-Stroke Fatigue Education Program ……….. 27

The phenomenon of fatigue …………………………………………………………………………… 27

The role of rest and sleep ………………………………………………………………………………. 28

Energy conservation ………………………………………………………………………………………. 29

Physical activity ………………………………………………………………………………………………. 30

Theoretical Support for Group-Based Psychosocial Intervention in Managing

Disability Conditions ………………………………………………………………………………………. 32

Self-efficacy theory ………………………………………………………………………………………… 33

Cognitive behavioral therapy (CBT) ………………………………………………………………… 35

The role of occupational therapy ……………………………………………………………………. 37

A Theoretical Basis for Group-Based Rehabilitation Therapy ……………………………………… 38

Group-Based Therapy for Post-Stroke Fatigue ……………………………………………………………. 39

Chapter Three: Methodology ………………………………………………………………………………………………… 41

Introduction ………………………………………………………………………………………………………………. 41

Approval ……………………………………………………………………………………………………………………. 41

Hypotheses ………………………………………………………………………………………………………………… 41

Design Rationale ………………………………………………………………………………………………………… 42

Study Design ………………………………………………………………………………………………………………. 43

 vii

Determination of Variables ………………………………………………………………………………………… 46

Participant Selection ………………………………………………………………………………………………….. 47

Description of the Setting ………………………………………………………………………………………….. 49

Measures …………………………………………………………………………………………………………………… 50

Materials …………………………………………………………………………………………………………………... 53

Procedures ………………………………………………………………………………………………………………... 55

Initial assessment …………………………………………………………………………………………… 56

Non-intervention phase …………………………………………………………………………………. 56

Group-based educational intervention phase ………………………………………………… 56

Post-intervention phase …………………………………………………………………………………. 58

Statistical Analysis ……………………………………………………………………………………………………… 58

Summary …………………………………………………………………………………………………………………… 59

Chapter Four: Results ……………………………………………………………………………………………………………. 61

Introduction ………………………………………………………………………………………………………………. 61

Characteristics of the Participants ……………………………………………………………………………… 61

Effect of Rehabilitation Approaches on Post-Stroke Fatigue ………………………………………. 63

Effect of Post-Stroke Fatigue on Participation in Daily Activities ………………………………... 64

Possible Influence of Demographic Characteristics ……………………………………………………. 67

Feedback on Post-Stroke Fatigue Program Effectiveness …………………………………………. 68

Summary …………………………………………………………………………………………………………………… 72

Chapter Five: Discussion ……………………………………………………………………………………………………….. 74

Introduction ………………………………………………………………………………………………………………. 74
 viii

Rehabilitation Therapies Can Reduce Post-Stroke Fatigue ..……………………………………….. 74

Participation in Daily Activities Was Not Changed …………………………………..……….………… 77

Demographic Characteristics Influence Interpretation of Results ……………………….……… 78

Participants Felt Confident in Applying Techniques to Relieve Fatigue …………………….… 79

Implications for Occupational Therapy Practice …………………………………………………………. 80

Considerations regarding assessments …………………………………………………………… 82

Considerations regarding intervention …………………………………………………………… 83

Consideration of multiple impairments post-stroke ……………………………………….. 83

Considerations regarding caregiver support …………………………………………………… 84

Theoretical and Research Implications ………………………………………………………………………. 84

The issue of self-efficacy ………………………………………………………………………………… 84

Ecological validity …………………………………………………………………………………………… 85

Considerations for the future …………………………………………………………………………. 85

Limitations of the Research ……………………………………………………………………………………….. 86

Summary and Conclusion …………………………………………………………………………………………… 88

References …………………………………………………………………………………………………………………. 89

Appendices

A: IRB Approval and Informed Consent

B: Fatigue Severity Scale

C. Physical Self-Maintenance Scale – Instrumental Activities of Daily Living

D. Center for Epidemiologic Studies- Depression

E. National Institutes of Health Stroke Scale

 ix

F. Pittsburgh Sleep Quality Index

G. Demographic Questionnaire

H. Intervention Satisfaction Survey

I: Recruitment Flyer

Vita
 x

List of Tables

1: Participation Criteria per Assessment Tool score .……………………………………………………………… 43

2: Study Design and Assessment Timeline …………………………………………………………………………….. 45

3: Program Goals and Objectives …………………………………………………………………………………………… 54

4: Intervention Program by Session ………………………………………………………………………………………. 57

5: Descriptive Statistics of Demographic Information ……………………………………………………………. 63

6: Means and Standard Deviations for FSS and PSMS-IADL scores (n=19) ……………………………… 65

7: Results of RM-ANOVA for FSS and PSMS-IADL Mean Scores across Phases ……………………….. 67

8: Results of RM-ANOVA for FSS and PSMS-IADL Grouped by Sex and by Setting (n=19) ………. 69

9: Intervention Satisfaction Survey Results ……………………………………………………………………………. 71

 xi

List of Figures

Figure 1. Mean scores on the FSS at the four data collection points. ……………………………………… 66

Figure 2. Mean scores on the PSMS-IADL at the four data collection points. … ……………………… 66
 Abstract

RELIEVING POST-STROKE FATIGUE USING A GROUP-BASED EDUCATIONAL TRAINING APPROACH

Catherine Emery (nee Emenheiser), PhD

A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of
Philosophy at Virginia Commonwealth University.

Virginia Commonwealth University, 2015

Tony Gentry, PhD, Professor Occupational Therapy Department

Post-stroke fatigue is a common problem that may limit participation in everyday

activities. Emerging evidence suggests that group-based training in fatigue management may be

an efficient means of reducing the effects of post-stroke fatigue. This mixed methods, quasi-

experimental study proposed to determine whether a group-based educational program could

be successful in relieving post-stroke fatigue and improving participation in daily activities. A

convenience sample of stroke survivors (n=20) from retirement communities in southeastern

PA were invited to participate in the research. Participants were screened for depression,

motor and cognitive recovery, and sleep quality. Fatigue was measured using the Fatigue

Severity Scale (FSS) and activity participation was measured using the Physical Self-

Maintenance Scale- Instrumental Activities of Daily Living (PSMS-IADL). The measures were

administered in a double pre-test, double post-test format over three seven-week phases; a
non-intervention period; a group-based intervention period, and a post-intervention period.

Qualitative information was gathered using a self-made Intervention Satisfaction Survey. Data

analysis involved measures of central tendency for the demographic information. Tabulations

of the survey responses were completed to judge the effectiveness of the group-based program

or its’ components from the participants’ perspectives. Results indicated a statistically

significant reduction in reported fatigue post-intervention (p= .022), which continued for seven-

weeks (p= .240). There was a strong effect size for the post-intervention reduction of fatigue (r=

.69). There was a trend toward improved participation in daily activities. Distribution across

groups for presence of social support, age, sex, and level of care was found to be equivalent

after one-way chi square analysis. There was no significant influence of these variables on

fatigue or participation when used as grouping variables in RM-ANOVA. Participants reported

feeling most confident scheduling activity to include rest periods and least confident managing

sleep problems. Limitations include small sample size, demographics not being representative

of the general stroke population, use of self-report measures with possible ceiling effect of

PSMS-IADL, instrumentation effect given multiple administrations, and history effects as groups

occurred at different time of the year. Overall, the results indicate that participation in a group-

based educational program was effective in reducing post-stroke fatigue in chronic stroke.
 Chapter One: Introduction

With this dissertation, I provide evidence that people who have chronic fatigue post-

stroke can function more independently and with less fatigue after participating in a group-

based fatigue management course. Only two prior studies have been found in the literature

that reported on rehabilitation interventions for post-stroke fatigue (Clarke, Barker-Collo, &

Feigin, 2012; Zedlitz, Fassoit, & Geurts, 2011) despite the prevalence of fatigue and its impact

on participation in daily activities (Stokes, O’Connell, & Murphy, 2011; Ingles, Eskes, & Phillips,

1999; Di Fabio, Soderberg, Choi, Hansen, & Shapiro, 1998).

Cerebrovascular accident (CVA, or stroke) accounts for about one of every 18 deaths in

the United States, making it the fourth leading cause of death and a leading cause of serious,

long-term disability (American Heart Association (AHA), 2014; National Institute on

Neurological Disorders and Stroke (NINDS), 2014). There are approximately 610,000 new cases

every year and there are seven million survivors living with the effects of stroke in the United

States (AHA, 2014). Globally, stroke is the most commonly occurring neurological disease

(NINDS, 2014). The American Stroke Association, a division of the American Heart Association,

has set a priority for research to examine the characteristics associated with successful recovery

after stroke (AHA, 2014). Post-stroke fatigue is a common experience of stroke survivors, which

has been identified as existing separately from post-stroke depressions. While several authors

have identified a need for interventions to address this problem, little research has been

1
conducted into a successful rehabilitation intervention. The prevalence of stroke (AHA, 2014;

NINDS, 2014), as well as the high rate of fatigue experienced by survivors (Ingles et al., 1999),

seems to justify its inclusion as a research priority by survivors, caregivers and health

professionals alike (Pollock, St-George, Fenton, & Firkins, 2014).

The Problem of Post-Stroke Fatigue

Stroke can result in “problems controlling movement, sensory disturbances including

pain, problems using or understanding language, problems with thinking or memory; and

emotional disturbances” (NINDS, 2014, para 5), although specific levels of disability will differ

based on the extent of the stroke and the area of the brain affected. Though we most often

identify stroke with obvious physical impairment and communication issues, survivors report

that it is the emotional and non-specific symptoms (i.e., fatigue, dizziness, headache, and

irritability), sometimes referred to as invisible disabilities, that interfere the most with role

reintegration and social participation in the chronic, or post-rehabilitation, condition (Robison

et al., 2009; Stone, 2005; Roding, Lindstrom, Malms, & Ohman, 2003).

Fatigue is reported by as many as 75% of stroke survivors (Stokes et al., 2011; Ingles et

al., 1999; Di Fabio et al., 1998). Fatigue is generally defined as physical and mental lack of

energy; “an overwhelming sense of tiredness, exhaustion, lack of energy or difficulty sustaining

routine activities” (Naess, Nyland, Thomassen, Aarseth, & Myhr, 2005, p. 245; Bogousslavsky,

2003; de Groot, Phillips, & Eskes, 2003; Glader, Stegmayr, & Asplund, 2002; Krupp & Pollina,

1996). In a study of 250 stroke survivors, of the 58.3% of patients who reported fatigue, its

daily occurrence was “one of the most disabling symptoms after stroke” (van Eijsden, van de

Port, Visser-Meily, & Kwakkel, 2012, p. 3). Stroke survivors report that the level of fatigue is

2
unexpected and that they had not been prepared for its occurrence (Flinn & Stube, 2010).

Because fatigue is difficult to adjust to, survivors report it to be very disruptive to resumption of

previous roles and routines (Glader et al., 2002), such as social participation, return to work,

driving, reading, and daily functional activities (Flinn & Stube, 2010). Incidence of fatigue

appears to worsen from three months up to one year post-stroke and then remains steady for

up to five years post-event, which negatively affects life satisfaction for stroke survivors

(Schepers, Visser-Meily, Ketelaar, & Lindeman, 2006; Astrom, Asplund, & Astrom, 1992).

Fatigue is not uncommon in other neurological disorders (Chaudhuri & Behan, 2004; de

Groot et al., 2003; Krupp & Pollina, 1996) including multiple sclerosis (MS), cancer, post

poliomyelitis, chronic fatigue syndrome (CFS), Parkinson’s disease, and traumatic brain injury

(TBI). Fatigue is attributable, in part, to the residual motor impairments such as muscle

weakness and muscle fatigability that accompany these disorders (Chaudhuri & Behan, 2004;

de Groot et al., 2003; Ingles et al., 1999). But post-stroke fatigue has been described as a

primary symptom rather than as an outcome of chronic disease (Chaudhuri & Behan, 2004; de

Groot, et al., 2003) and is commonly described as mental exhaustion in the absence of

depression (Annoni, Staub, Bogousslavsky, & Brioschi, 2008; Choi-Kwon, Han, Kwon, & Kim,

2005; Michael, 2002; Ingles et al., 1999). Although fatigue is consistently seen after lesions “in

pathways associated with arousal and attention, reticular and limbic systems, and basal

ganglia” (Levine & Greenwald, 2009, p. 979-980; Michael, 2002), it does not appear to be

associated with the type or severity of central nervous system damage or disease (Chaudhuri &

Behan, 2004; Ingles et al., 1999). Fatigue is more closely linked to disability after stroke due to

the levels of inactivity it causes (Appelros, 2006; Michael, Allen, & Macko, 2006). Monitoring

3
lifestyle changes is important in the management of fatigue across diagnosis categories and can

indicate a role for cognitive-behavioral therapy that addresses fatigue awareness, poor sleep,

pain, and physical activity to reduce the impact of fatigue on daily function (Chaudhuri &

Behan, 2004).

Post-stroke fatigue has not been researched to the extent that fatigue has in other

disorders and little is known about approaches to relieve/reduce its occurrence (Barker-Callo,

Feigin & Dudley, 2007; Choi-Kwan et al., 2005; Bogousslavsky & Staub, 2003; de Groot et al.,

2003; Ingles et al., 1999). Studies have examined the use of pharmaceutical agents, but these

have not been found to be effective in remediating post-stroke fatigue (Briochi et al., 2009;

McGeough et al., 2009; Choi-Kwon, Choi, Kwon, Kang & Kim, 2007). Group-based psycho-

educational intervention has been used to successfully manage fatigue in MS, cancer, and CFS

(Scheurs, Veehof, Passade, & Vollenbroek-Hutten, 2011; Winningham, 2001; Di Fabio et al.,

1998) but only recently in post-stroke populations (Clarke et al., 2012; Zedlitz et al., 2011).

Based on self-efficacy theory and cognitive behavioral therapy, these group-based intervention

approaches focused on an educational course of six to eight weeks in duration that

incorporated energy conservation education, exercise routines, sleep hygiene approaches, and

modified rest patterns (Matuska, Mathiowetz, & Finlaysen, 2007; Vanage, Gilbertson, &

Mathiowetz, 2003: Mathiowetz, Matuska, & Murphy, 2001; Portenoy & Itri, 1999; Di Fabio et

al., 1998). Developing and evaluating the efficacy of treatment strategies for post-stroke

fatigue is necessary in order to improve stroke recovery and quality of life post-stroke.

Post-stroke fatigue has been shown to disrupt social participation and quality of life for

stroke survivors. In a study by van de Port, Kwakkel, Schepers, Heinemans, & Lindeman (2007),

4
the relationship between fatigue and health-related quality of life (HRQL) was examined in 233

stroke patients. The authors found that fatigue was independently related to HRQL. Flinn &

Stube (2010) took a qualitative approach to examining the impact of fatigue and formed focus

groups of 19 community-living stroke survivors. The participants reported that they felt a lack

of preparation for the fatigue experience and that it had a debilitating effect on daily

occupational performance, including social participation. In a qualitative examination of fatigue

experienced by patients in chronic conditions, Kralik, Telford, Price, and Koch (2005) reported

that fatigue could be overwhelming, that it fluctuated day-to-day and throughout each day and

disrupted all aspects of the participants’ lives. The most challenging aspect of fatigue was that it

was not apparent to others, contributing to the impression by people with stroke that

healthcare providers did not consider it important (Kralik et al., 2005; Glader et al., 2002).

Fatigue can cause confusion, frustration, irritability, increased pain perception,

decreased immune response and lack of engagement in activity (NINDS, 2014) all of which

contribute to reduced quality of life. Fatigue after stroke “is an important cause of long-term

morbidity in cerebrovascular diseases” (Chaudhuri & Behan, 2004, p. 978). This could be

addressed through increased knowledge concerning interventions that have been shown to

increase functional abilities and improve quality of life for stroke survivors (Steultjens, Dekker,

Bouter, Leemrijse, & van der Ende, 2005; Michael, 2002). Because post-stroke fatigue impacts

functional performance of everyday activities and quality of life, it is critical that rehabilitation

professionals develop and evaluate strategies and activities to address this problem and

incorporate them into patient education for health management (AOTA, 2014).

5
Physical Rehabilitation Theory in the Management of Post-Stroke Fatigue

The concept of health has begun to shift from a more exclusive focus on physical

aspects of recovery as measures of successful outcome toward a broader view that includes

quality of life and well- being in an atmosphere of client-centered treatment (Cott, Wiles, &

Devitt, 2007). This shift toward an understanding of health as an integration of body function,

activity/participation, and context/environmental factors is codified in the International

Classification of Function, Disability and Health (ICF) by the World Health Organization (WHO)

(2001). With this shift comes increased attention to the needs of stroke survivors beyond basic

activities of daily living (ADL) and an awareness of the chronic nature of stroke recovery. The

ICF is the universal framework for disability research (Cott et al., 2007). It provides a systematic

conceptualization for understanding the experience of disability. It defines health from the bio-

psycho-social perspective involving body components, the individual, and society in terms of

activity and participation (van de Port et al., 2007). Outcome is conceptually related to the

activities and participation component of the ICF; the individual is seen as the center of the

process with quality of life and optimum participation as the ultimate measure of success in

adjusting to disability (Cott et al., 2007).

The American Occupational Therapy Association (AOTA, 2014), influenced by the WHO’s

ICF, published the Occupational Therapy Practice Framework, 2nd edition in 2008; which was

updated in 2014. The idea of engagement in occupations to support participation is the

founding premise of occupational therapy (AOTA, 2014) and this was recognized on a global

scale by the WHO’s recognition that health is affected by activity and participation. This idea of

engagement in occupations to achieve health remains the overarching outcome of occupational

6
therapy intervention as delineated in the Occupational Therapy Practice Framework, 3rd ed.

(OTPF), much as optimum participation is seen as the ultimate outcome by the WHO.

Given that the overarching goal of occupational therapy is engagement in occupations

and that the guidelines from WHO recommend increased participation to improve health,

research is needed to identify interventions for post-stroke fatigue. Also ‘recovery’ now

projects the understanding of the chronic nature of disease and the importance of long-term

management of disability and disease to achieve quality of life (WHO, 2001). With this shifted

focus to disease management came the understanding that people required education about

their conditions. This resulted in the first line of interventions using a psycho-educational model

in program development. The idea was to make people aware of the problem (for instance, the

existence of fatigue), to provide explanations as to why it occurs and with what frequency, to

observe and measure its impact on daily activity, and to suggest methods for its management

(Schepers et al., 2006; Michael, 2002).

As theories into health behavior have evolved, so has a growing recognition that

education alone does not create behavior changes that manage the problem or reduce the

impact on daily activity participation. This has led to the inclusion of Bandura’s (1995) concept

of self-efficacy: the confidence a person has in the ability to control their life circumstances by

completing actions and overcoming barriers to behaviors. Self-efficacy theory involves three

interrelated ideas: 1) that people must have knowledge and skills related to the behavior of

interest; 2) that they must be confident in their ability to use cognitive and motivational

resources; and, 3) that they develop context-specific confidence in completing a desired task or

action. Self-efficacy beliefs are predictors of the amount of effort a person will put toward

7
health-promoting behaviors despite barriers or adverse experiences (Bandura, 1995). While

education remains an important first step, current research protocols utilize a cognitive

behavioral therapy (CBT) approach in chronic disability management to develop the behavioral

change needed to improve the chronic disability condition (Price, Mitchell, Tidy, & Hunot, 2008;

Matuska et al., 2007; Gielissen, Verhagen & Bleijenberg, 2007; Prins et al., 2001).

Combining elements of behavioral and cognitive theory, CBT works to change a person’s

thoughts from ‘incapable’ to ‘capable ‘of activity engagement through successful experiences

(Bruce & Borg, 2002). Activities are used to model success as well as to provide opportunities

for participants to experience mastery and build their perceptions of themselves as capable.

Group-based intervention is a technique used by occupational therapists, among others, to

apply CBT as it provides for active problem-solving generated from people with a shared

experience of disability or chronic disease (Schwartzberg, Howe & Barnes, 2008).

Purpose Statement

The purpose of this study was to determine whether participation in a group-based

educational program decreased fatigue and improved functional performance for chronic

survivors of stroke.

Research Questions

This study was designed to provide evidence in support of the following questions:

1. Does participation in a group-based educational program of fatigue management

result in reduced self-report of fatigue among stroke survivors with fatigue as

measured by the Fatigue Severity Scale (FSS)?

8
 2. Will participants show carryover of this reduction in the experience of fatigue for

up to seven weeks after the program concludes (as measured by the FSS)?

3. Does participation in a group-based educational program of post-stroke fatigue

management result in improved self-report of participation in everyday activities

(as measured using the Physical Self-Maintenance Scale-Instrumental Activities

of Daily Living; PSMS-IADL)?

4. Will stroke survivors report increased participation in everyday activities for up

to seven weeks after the program concludes (as measured by the PSMS-IADL)?

Rationale for this Study

Fatigue is acknowledged as a frequent symptom after stroke. It is rated among the most

disabling of symptoms that remain in post-stroke reintegration, especially for survivors with

less severe physical or cognitive disabilities (Barker-Callo et al., 2007; Ingles et al., 1999) and

mild stroke (Carlsson, Moller, & Blomstrand, 2004). Only a limited number of research studies

have examined interventions that are successful after stroke (Clarke et al., 2012; Zedlitz et al.,

2011). Therapists are in need of evidence-based tools to improve outcomes relative to quality

of life for the patients they treat. This study was intended to address that information and

resource gap by examining the effects of a group-based educational training approach on post-

stroke fatigue.

Summary

As American healthcare evolves to address community-based client-centered

intervention, increased attention will be paid to long-term outcomes of the rehabilitation

therapy process. Outcomes are increasingly assessed in terms of activity and participation as

9
recommended by the WHO’s ICF. This move coincided with the publication of the OTPF (3rd

ed.), which focuses occupational therapy intervention on the ultimate outcome of engagement

in occupation. The OTPF provides a mandate for evidence-based intervention that addresses

the needs of the clients served by occupational therapists.

Stroke is not only one of the leading causes of chronic disability; it is one of the most

frequently treated diagnoses in the field of occupational therapy. As such, it is critical for

therapists to examine the needs of stroke survivors for resumption of daily routines. One of the

most significant long-term difficulties reported by stroke survivors is fatigue; it is a major

limitation to resumption of roles, routines, and quality of life post-stroke. Studies are needed

to provide support for community-based intervention strategies in addressing this debilitating

symptom of chronic stroke.

This pilot research study tested a group-based educational training program for stroke

survivors who were experiencing fatigue that impacted participation in everyday activities. The

program was developed from concepts of energy conservation that were successful in treating

fatigue in other conditions as well as components specific to the post-stroke condition. Self-

report measures of fatigue (FSS) and level of everyday activity (PSMS- IADL) were used at two

pre-intervention and two post-intervention points and compared to determine changes in

group mean scores across phases of participation. The influence of social support, sex, age, and

level of care were examined as they represent potentially confounding variables to the fatigue

experience. Participants were surveyed for feedback on the program to contribute to

improvement for application in future research and practice.

10
 Chapter Two: Review of the Literature

Introduction

In this chapter, I examine the history of efforts to remediate or manage post-stroke

fatigue, the theoretical foundations underlying these efforts, research in the field, and the

prospects for future research, with a particular focus on group-based education to address

deficits in everyday functional performance related to fatigue post-stroke.

Fatigue is reported by as many as 75% of stroke survivors (Stokes et al., 2011; Ingles et

al., 1999; Di Fabio et al., 1998). However, post-stroke fatigue has not been the focus of research

into successful methods of rehabilitation intervention as have other conditions for which

fatigue is also a concern (Mathiowetz et al., 2001; Winningham, 2001; Whiting et al., 2001).

Various group-based educational training approaches have been successfully applied in treating

fatigue in other conditions (Schepers et al., 2006; de Groot et al., 2003; Di Fabio et al., 1998);

those interventions are presented in this chapter as they provide insight into program

components that may be applied to post-stroke fatigue therapies. This group-based approach

allows participants to share experiences, develop strategies, increase social participation, and

develop a sense of control over common results of disease (Bethoux, 2005), which is considered

to be an important element to their success. The limited evidence in support of rehabilitation

11
interventions for post-stroke fatigue (Clarke et al., 2012; Zedlitz et al., 2011) was reviewed in

this chapter.

Pharmacotherapy has been used in hopes of reducing the fatigue experience (Babson,

Feldner, & Badour, 2010). Some medications have been used to target depression or the

mechanisms of neurological activity (i.e., dopaminergic agents) although effectiveness has not

been supported by the limited research results (Clarke et al., 2012). Medications have also been

used to target insomnia but “it is believed that fatigue itself is an independent symptom”

(Levine & Greenawald, 2009. p. 350) for which these medications do not offer effective

treatment. Pharmacological agents also have significant side-effects (tolerance, dependency,

impairments in psychomotor and cognitive processing and daytime sedation) which bring into

question their overall benefit (Babson et al., 2010; Im, Strader, & Dyken, 2010). The limited

evidence to support use of pharmaceutical agents to reduce post-stroke fatigue (Briochi et al.,

2009; McGeough et al., 2009) is reviewed here.

Although non-pharmacological interventions for post-stroke fatigue are limited (Zedlitz

et al., 2011 & Clarke et al., 2012), the evidence supports use of a combination of cognitive

therapy and physical exercise/activity (McGeough et al., 2009). Support for therapeutic

interventions in other neurological conditions is strong (Mathiowetz, Matuska, & Murphy,

2001; Krupp & Pollina, 1996) and contributes information on the content of effective non-

pharmacologic interventions.

The Evidence for Post-Stroke Fatigue Management Therapies

Research identifying the problem. Fatigue is defined as a perceived “lack of energy,

weariness, and aversion to effort” (Krupp & Pollina, 1996, p. 456) that is described as excessive

12
and problematic and not relieved by rest (Zedlitz et al., 2011; Chaudhuri & Behan, 2004; de

Groot et al., 2003). Fatigue is a common, almost universal, complaint of stroke survivors (de

Groot et al., 2003) that can cause frustration, irritability, and lack of engagement in activity

(NINDS, 2014), all of which contribute to reduced quality of life. Because fatigue is difficult to

adjust to, survivors report it to be very disruptive to resumption of previous activity and

participation (Glader et al., 2002). Incidence of fatigue appears to worsen from three months

up to one year post-stroke and then remains steady for as long as five years post-event; this

increased level of fatigue negatively affects life satisfaction for survivors (Schepers et al., 2006;

Naess et al., 2005).

Ingles et al. (1999) completed groundbreaking research in the area of post-stroke

fatigue. Eighty-eight stroke patients and 56 older persons who volunteered were recruited to

complete a modified version of the Fatigue Impact Scale, the Geriatric Depression Scale, and a

health and lifestyle questionnaire. The forms were mailed to the participants to be completed

independently and returned. Stroke-related medical information was obtained from health

records; data included location of the lesion, type of stroke, Stroke Severity Scale score, Barthel

Index score, and Oxford Handicap Scale. Results indicated that the number of participants

reporting fatigue was greater in the stroke group than in the volunteers (68% as compared to

36%). Forty percent of the stroke group indicated fatigue to be their worst (14 out of 88) or

one of their worst (12 out of 88) symptoms with 27% reporting daily experience of fatigue. The

researchers also found that the experience of fatigue was similar despite the amount of time

post-stroke (i.e., 66% after 3-6 months; 75% after 7-9 months; and, 65% after 10-13 months).

Also of significance was that the occurrence of fatigue did not show correlation with either the

13
number of co-morbid health conditions, age, sex, or scores on the stroke registry measures.

The authors raised the possibility that fatigue was underreported since the questionnaire asked

participants to identify if they had problems with fatigue rather than whether they experienced

it. Several responses indicated that stroke survivors had fatigue but that, through modified

lifestyles, it did not create a problem. The greatest impact of fatigue reported from this study

was on physical and psychosocial functioning. Fatigue was found to be independent of the

occurrence of depression. The authors concluded that the “recognition and treatment of

fatigue are important for maximizing recovery” (p. 173).

Glader et al. (2002) reported on a study of post-stroke fatigue in Sweden. The aim of

the study was to improve on previous research by reducing the risk of selection bias and lack of

generalizability due to small sample size. Glader et al. (2002) also wanted “to evaluate whether

patients with subjective fatigue have a worse outcome two years after the stroke than other

stroke patients” (p. 1327). Since most hospitals that provide service to stroke patients in

Sweden participate in a national registry called Riks-Stroke, the authors assert that “this study is

unique in its coverage of stroke patients in an entire country” (p. 1330) having data available

from 70% of all stroke patients in Sweden combined with an 80% response rate of returned

surveys. This allowed the authors to examine data from 3805 patients who completed a mailed

questionnaire which assessed ADL (Activities of Daily Living) and IADL (Instrumental Activities of

Daily Living) performance, self-perceived depression, fatigue, anxiety, and pain. Their results

indicated that fatigue was more common among those stroke survivors who required greater

assistance with ADL, IADL and who lived in an institutional setting. Self-reported fatigue was

also more common among those who were older on average when the stroke occurred and had

14
a “less advantageous initial condition” (p. 1329) which is defined as not married, dependent on

others prior to the stroke, and/or had experienced a second stroke. The authors concluded

that “fatigue is frequent and often severe, even late after stroke. It is associated with profound

deterioration of several aspects of everyday life… but receives little attention by healthcare

professionals” (p. 1327).

A review of the literature was completed by de Groot et al. (2003) to determine current

knowledge on occurrence of fatigue in stroke and other neurological conditions as well as to

begin work on treatment strategies. They found that few studies that documented the

incidence of fatigue in stroke, nor did research address the impact on daily routines and quality

of life. This review compared reported characteristics of post-stroke fatigue with fatigue

related to other neurological conditions, finding the following similarities: (1) it occurred

independently from depression; (2) it was usually chronic and pervasive; (3) it was often

reported as one of the worst symptoms; and (4) it did not seem related to age, sex, severity of

injury or degree of disability, despite some individual study results which did report

relationships among these variables (see above review of Glader et al., 2002). They concluded

that, due to these similarities, treatment approaches that have been used with other groups

may be effective in post-stroke treatment but that further research was needed.

Naess et al. (2005) studied the impact of fatigue and other factors, including cognition,

depression, and emotional reaction on everyday function at long-term follow-up for 192 stroke

survivors in Norway who were six years post-stroke on average, as compared to 212 health

controls. The researchers found that fatigue was more frequent in stroke survivors than in

controls even among those with no reported depressive symptoms. Unlike other studies, these

15
authors found an association among type of stroke (basilar artery infarction resulted in greater

incidence of fatigue), unfavorable outcomes (increased level of stroke severity) and fatigue.

Schepers et al. (2006) used the FSS to measure fatigue one-year post-stroke and to

examine potentially predictive characteristics of fatigue. They found that fatigue increased

during the first year post-stroke from 50% to 67% of patients while its reported impact on

function also increased. Interestingly, patients who had experienced good physical recovery

reported the greater negative impact of fatigue on function. The authors did not find a

relationship between cognitive disorders and fatigue despite the positive correlation between

mental effort and cognitive demand. While noting depression to be an important focus for

intervention, they acknowledged the presence of fatigue independent of depression. The

authors also examined “health locus of control beliefs” (p. 187), which were explained as beliefs

concerning whether healthcare professionals or the person themselves had a greater impact on

health states. The authors found that patients who reported a belief in physician control of

health also had a higher incidence of fatigue. Those with a higher internal locus of control

showed faster physical recovery. Low internal or high external locus of control were paired

with more problems caused by fatigue in a variety of patient groups (e.g. chronic fatigue

syndrome, chronic anxiety disorder, traumatic brain injury, spinal cord injury, and chronic low

back pain). The authors suggested that changing locus of control, which had been successful in

chronic pain treatment, might offer an effective, multidisciplinary treatment approach for post-

stroke fatigue (Schepers et al., 2006). This finding was used to guide the use of a cognitive-

behavioral approach in developing an intervention for post-stroke fatigue. The basic premise of

CBT is that individuals must change their mindsets from a negative to positive perspective on

16
their ability to engage in activities. This is done by providing opportunities to learn about and

participate in activities to manage one’s own behaviors relative to changing health conditions.

In other words, individuals must adopt an internal sense of control over the fatigue experience

and thereby reduce its effects on daily life.

In 2007, van de Port et al. looked for correlations between fatigue, ADL, IADL and

health-related quality of life (HRQL) in 223 patients assessed at 6, 12, and 36 months post-

stroke. Results indicated fatigue to be significantly correlated to IADL and HRQL but not to ADL.

This finding supported the authors’ “hypothesis that post-stroke fatigue is more strongly

related to the more energy-consuming IADLS …rather than to basic ADLs” (p. 43). Depression

skewed the relationship between fatigue and HRQL but fatigue was still independently

associated with HRQL (van de Port et al., 2007).

A 2009 literature review (Lerdal et al.) sought to “provide a comprehensive synthesis of

knowledge from the literature concerning the description, definition, and measurement [post-

stroke] of fatigue and its relationship to socio-demographic and clinical factors” (p. 928). They

found no specific theoretical definition but referenced the case definition published by Lynch et

al. (2007), which differentiated between community and hospital patients and included the

experience of decreased energy and increased need for rest as definitive characteristics. Other

findings include: absence of a scale to specifically measure post-stroke fatigue; conflicting

results as to the association of age, sex, living conditions, and personality as well as

relationships with stroke location and type; number of strokes and neurological findings with

post-stroke fatigue, and a possible relationship between pre- and post-stroke fatigue. The

17
authors concluded that “knowledge on post-stroke fatigue remains limited” (Lerdal et al., 2009,

p. 928).

As these studies show, post-stroke fatigue is an important problem that impacts

functional activity and quality of life and that is chronic in nature. Stroke survivors reported that

lifestyle modifications were necessary to reduce the impact fatigue had on physical and

psychosocial function. However, these modifications were made without effective tools to

understand and manage the condition due to lack of preparation for, or education on, effective

strategies received during the inpatient rehabilitation process. With only limited research into

the phenomenon or effective intervention for it, post-stroke fatigue seemed to receive

inadequate attention during the rehabilitation process. This lack of attention may have

contributed to the poorer outcomes in chronic stroke rehabilitation. Therefore, all authors

called for further research examining both the nature of post-stroke fatigue and interventions

for managing this condition.

Interventions that Address Post-Stroke Fatigue

A limited number of research studies into effective interventions for post-stroke fatigue

were available. These studies have taken two approaches to reducing post-stroke fatigue:

pharmacological and rehabilitation therapy. To develop a successful intervention, it was

important to review the results found from these previous treatment efforts.

Pharmacological approaches. Choi-Kwon et al. (2007) completed a pharmacological

study on the use of the neurotransmission modulating drug fluoxetine to relieve post-stroke

fatigue. Fluoxetine was used since studies had suggested possible neurotransmitter changes in

the basal ganglia as a source of post-stroke fatigue. The authors enrolled 83 patients who were

18
split into a placebo group (n=42) and a treatment group (n=40); five patients were not able to

complete the three-month protocol. They found no significant difference in the experience of

fatigue between the groups using pre- and post- protocol scores on the Visual Analogue Scale

and FSS. The study concluded that, since serotonergic dysfunction seems to play a minimal role

in post-stroke fatigue, fluoxetine was not an effective treatment (Choi-Kwon et al., 2007).

Brioschi et al. (2009) examined the effect of modafinil in patients with neurological

pathologies including stroke (brainstem or diencephalic – BDS; or cortical- CS) and multiple

sclerosis (MS). Modafinil is a “wakefulness-promoting molecule supposed to increase excitatory

glutamate transmission” (p. 244). Thirty-one patients completed the Fatigue Assessment

Inventory on three occasions: at baseline, after three months on the medication, and one

month after the medication had been stopped. The results showed a decrease in the severity

of fatigue experienced by BDS and MS groups but not for the CS group. The authors concluded

that “wakefulness-promoting agents might be effective on subjective primary fatigue” (Brioschi

et al., 2009, p. 248) in patients who sustain brainstem or thalamic strokes but were not shown

to be effective in relieving post-stroke fatigue after cortical infarctions.

Rehabilitation therapy approaches. A more recent review of the literature was done by

McGeough et al. (2009) for the Cochran Database of Systematic Reviews in an effort to identify

research supporting treatments that were effective in reducing the occurrence and/or severity

of post-stroke fatigue, that had outcomes related to quality of life, disability, functional

dependence or mortality, and that were cost-effective. Only a narrative review of available

studies was possible due to the diversity of the interventions studied. The authors found only

three published and two ongoing studies into post-stroke fatigue. Two of the published studies

19
reported on pharmacologic treatments and were reviewed previously (Choi-Kwon et al., 2007,

Brioschi et al., 2009). The third study included 1140 community-dwelling participants with a

variety of chronic diseases including lung disease, heart disease, stroke, and arthritis (Lorig et

al., 2001). Participants, including the 129 stroke survivors, were assigned to a chronic disease

self- management program (CDSMP) or to a wait-list control group. The intervention group

attended seven weekly sessions in community centers and was taught CDSMP by peers. The

CDSMP included, in part, education on exercise routines, use of cognitive symptom

management, nutrition, fatigue and sleep management, use of community resources, and use

of medications. Comparisons were made at baseline and after six months using the Medical

Outcomes Study energy/ fatigue scale. This study found no differences in fatigue between the

treatment and control groups, although data was not reported separately for each of the

chronic diseases represented (Lorig et al., 2001).

Of the two studies in progress at the time, one focused on the use of continuous

positive airways pressure (CPAP) for sleep-disordered breathing and used the Fatigue Severity

Scale to assess fatigue (McGeough et al., 2009). The second was part of a multi-site,

randomized controlled trial of cognitive and graded activity training (COGRAT) for post-stroke

fatigue (Zedlitz et al., 2011). The main outcome measure was fatigue. Data was not available

for McGeough et al. (2009), who stated “there is no ‘usual care’ arm in this trial, and so it will

not be able to test the hypothesis that cognitive treatment is better than usual care” (p. 8).

They concluded that more research was needed in the area of post-stroke fatigue. The pilot

research referenced was completed prior to the current research, however, and is reviewed

next.

20
 Zedlitz et al. (2011) completed a pilot study applying COGRAT to post-stroke fatigue in

an outpatient setting in The Netherlands. The authors studied 23 outpatients with stroke in

groups of 12 who received cognitive strategy intervention and physical graded activity on

consecutive treatment days for 12 consecutive weeks. The cognitive intervention included

education on compensation strategies to manage fatigue and cognitive behavioral therapy to

change unhelpful thoughts about fatigue. These were two-hour group sessions provided by a

neuropsychologist. The physical graded activity involved endurance (walking on a treadmill),

strength, and flexibility training (lateral pull down, chest and leg presses, and core muscle

exercises). A physiotherapist provided the four hours (two-hour sessions, twice per week) of

physical activity. Sixteen people showed significant reduction in fatigue and psychological

distress; significant enough to warrant a full scale study (Zedlitz et al., 2011).

Suggestions for future research included a reduction in the size of each group to address

participant distraction, “more consistent use of cognitive behavioral techniques and

development of a protocol for the graded activity training” (Zedlitz et al., 2011, p. 488). The

multicenter randomized controlled trial of outpatients is currently in progress. This work has

provided guidance to the current study in several ways. First, it lent support for interventions

aimed specifically at fatigue management, addressing education and activity management over

non-specific interventions. Second, it supported the use of a cognitive-behavioral approach

when teaching compensation strategies to deal with existing fatigue. Lastly, it incorporated

elements of activity as a promising factor for reducing fatigue, which was added to the present

intervention program due to the results shown here. However, there were important

limitations: the participants were still receiving outpatient services where the focus was on

21
changing physical fitness, the participants all reside in The Netherlands, and cognitive

behavioral therapy was not applied consistently during the pilot program (Zedlitz et al., 2011).

The authors encourage application to other patient groups, which was the intent of the present

research study.

In 2012, Clarke et al. completed a pilot study of a group education program to address

the fatigue experienced during acute stroke recovery (3-18 months post event). The authors

assigned individuals who were experiencing fatigue post-stroke to a fatigue management group

(n=9) or to a general stroke education group (n=7). Fatigue was measured prior to, at the

conclusion of, and three months after the six -week educational groups. Several fatigue scales

were used: FSS, Visual Analogue Scale for Fatigue, Checklist Individual Strength, and Short

Form-36. An examination of the concurrent validity of these scales indicated that the FSS had

the highest validity among the other scales. The group intervention was developed by the

authors as there was no formalized program available for post-stroke fatigue. Although not

clearly specified, the content development seemed based on intervention research with cancer

survivors, MS, and traumatic brain injury. The group sessions were led by a clinical psychologist

and covered the following topics: (1) overview of fatigue, (2) fatigue management, (3)

sleep/relaxation, (4) exercise and nutrition, (5) mood, and (6) future focus. Although significant

differences were not obtained (p = .086), fatigue severity was reduced more for the fatigue

management group (FSS < 3.9) than for the control group (FSS above the cutoff score of 4).

Additionally, social functioning (measured using the SF-36) improved for both groups while

depression (measured by the Hospital Anxiety Depression Scale) was reduced for the treatment

group but not to the level of significance. The authors suggest that, since both groups showed

22
improvement, the content of the control group was too similar to the fatigue management

group resulting in the lack of statistically significant differences. Limitations include that the

groups were composed of people in the acute recovery period, that participants were residents

of New Zealand, and that the number of participants was small. The authors suggested that

future trials should examine chronic stroke conditions to expand generalizability beyond the

acute stage of stroke recovery (Clarke et al., 2012). For the current study, this research

supported decisions of session length, intervention frequency and topics covered. Relaxation

content was added to address the co-occurrence of anxiety disorders post-stroke as was the

contribution of exercise as it is a well-known contributor to fatigue management.

While pharmacological interventions have either not been successful (fluoxetine) or

have been shown to have limited effectiveness (modafinil) in relieving post-stroke fatigue,

promising preliminary results were reported in studies which have applied psycho-educational

interventions that have been shown to be effective for other fatiguing conditions. In order to

develop an intervention program for long-term stroke survivors, it was important to consider

this evidence.

The Evidence for Psychological Approaches to Fatigue Management in Physical Disability

other than Stroke

Fatigue is one of the common sequelae of many neurologic disorders other than stroke.

These include MS, CFS, cancer (CA), post-polio syndrome, Parkinson’s disease, and TBI (de

Groot et al., 2003; Krupp & Pollina, 1996). Researchers have found that characteristics of

fatigue are similar among these disorders: fatigue can exist independently of depression and it

has not been shown to have a relationship to age, sex, site or severity of brain injury, or degree

23
of physical impairment (de Groot et al., 2003). Fatigue is often described by patients as one of

the worst symptoms and is considered a primary effect rather than a secondary effect of the

disease process (Chaudhuri & Behan, 2004; de Groot et al., 2003; Krupp & Pollina, 1996). Since

many of the characteristics of post-stroke fatigue are shared in other neurologic disorders, it

seemed reasonable that it may respond to interventions used effectively with these other

disorders. To date, there is no published research on group-based educational approaches for

the treatment of fatigue in post-polio syndrome, Parkinson’s disease, or TBI. Therefore, the

following review of current research focuses on interventions used for people with MS, CA, and

CFS.

Fatigue is one of the most common symptoms reported by MS patients (Matuska et al.,

2007). Mathiowetz, Matuska and colleagues have developed an educational program focused

on energy conservation strategies to address MS fatigue (Mathiowetz et al., 2001; Vanage et

al., 2003; Mathiowetz, Finlayson, Matuska, Chen, & Luo, 2005; Matuska et al., 2007;

Mathiowetz, Matuska, Finlayson, Luo, & Chen, 2007). As an example of these studies,

Mathiowetz, Matuska, and Murphy (2001) conducted a “repeated measures with control and

experimental interventions” (p. 449) study. A convenience sample of 54 community-dwelling

volunteers who were diagnosed with MS participated in a six-week, two hours per week,

energy conservation course. The authors utilized the energy conservation course developed by

Packer, Brink, and Sauriol (1995) but focused solely on adults with MS. The program sessions

were led by occupational therapists for groups of 8-10 persons. The program covered “the

importance of rest throughout the day, positive and effective communication, proper body

mechanics, ergonomic principles, modification of the environment, priority setting, activity

24
analysis and modification, and living a balanced lifestyle” (Mathiowetz et al., 2001, p. 451). The

Fatigue Impact Scale, the Self-Efficacy Gauge, and the Short Form 36 were used to measure the

self-reported effect of fatigue on functional performance, confidence in the ability to complete

activities, and quality of life, respectively. Participants demonstrated less fatigue impact,

increased self-efficacy, and improved quality of life after completion of the six week module.

The results provided firm evidence for the efficacy of an energy conservation education

program to combat fatigue in MS. Other studies in this area have repeated this intervention

with larger population samples, and with more time between intervention and outcome

measurement (Mathiowetz et al., 2005; Mathiowetz et al., 2007; Matuska et al., 2007). All have

reached similar conclusions.

Fatigue that presents a significant obstacle to completion of one’s everyday activity

routine is prevalent in patients with CA as well (Cheville, 2009; Winningham, 2001; Portenoy &

Itri, 1999). Portenoy and Itri (1999) examined CA-related fatigue and reported on methods to

manage it, which were supported by the National Comprehensive Cancer Network (NCCN)

(Cheville, 2009). Cheville reported that “a multidimensional approach that includes

medications, exercise, psychological intervention, and improved sleep hygiene offers the

greatest likelihood of success” (p. 410). Specifically, Portenoy and Itri (1999) described a course

of treatment providing education about fatigue, sleep hygiene, regular exercise, stress

reduction or cognitive therapies, and dietary intake. This intervention showed application of

the concepts of consistent daily energy expenditure, balancing time spent upright/active and in

bed/at rest, and nutritional resources important in exercise physiology (Winningham, 2001).

These concepts were incorporated into the current research intervention program either as

25
part of the education on the phenomenon of post-stroke fatigue (nutrition) or as individual

sessions (balancing activity with rest, and exercise).

Chronic fatigue syndrome (CFS) is a disorder which has gained recognition by the

medical community only recently. It is characterized by physical and mental fatigue although a

variety of symptoms may be experienced (Whiting et al., 2001). While a variety of

interventions have been used to remediate CFS, debate continues regarding the most effective

management. Whiting et al. (2001) completed a systematic review of the literature to assess

the effectiveness of intervention for CFS. They examined 44 trials that ranged from 12 to 326

participants and included a range of interventions, such as: behavioral (graded exercise

combined with cognitive behavioral therapy), immunological (effect of immunoglobulin),

pharmacological, addressed with nutritional supplements, addressed with alternative or

complimentary medicine, and combined treatment approaches (cognitive behavioral, social

support and/or education). Overall, the results were inconclusive in terms of effectiveness.

Only the studies involving behavioral and immunologic approaches yielded data sufficient to

meet the validity assessment. While the cognitive behavior and graded exercise therapies

showed positive results in relief of fatigue, the immunologic approach was inconclusive

(Whiting et al., 2001).

Price et al. (2009) completed a review of the literature on use of cognitive behavioral

therapy for CFS. The review included 15 studies involving a total of 1043 participants with CFS.

The results indicated that people who received cognitive behavioral therapy (CBT) were more

likely to report a reduction in fatigue compared to those who received usual care or were on a

waiting list. However, when people who had dropped out of the studies were included; there

26
was no significant difference between usual care and CBT. The review also examined other

intervention techniques and found CBT to be more effective in reducing fatigue; but on “follow-

up, the results were inconsistent and the studies did not fit well with each other, making it

difficult to draw any conclusions” (Price et al., 2009, p. 2).

The Evidence for Key Components of a Post-Stroke Fatigue Education Program

Although the fatigue experience after neurological injury shares many characteristics,

there are some behaviors that appear to have a stronger presence in post-stroke fatigue than

with other conditions. Therefore, while the success of previous therapy interventions provided

a model for the components of an educational program, any intervention program should

address the characteristics which research has shown to have a significant presence post-stroke

and which may impact the benefit of a fatigue intervention program. Among those

characteristics are the presence of sleep related disorders and pain. Post-stoke pain is another

prevalent but invisible disorder with multiple causes (Chari & Tunks, 2010; Harvey, 2010), which

are beyond the scope of the current research. Researchers have identified key components of a

fatigue management training program, discussed below.

The phenomenon of fatigue. Stroke survivors have reported that they did not feel

prepared for the fatigue they experienced after their stroke (Roding et al., 2003). While

acknowledging that healthcare professionals may have provided information on the

phenomenon, it was not at the right time or under the right circumstances to be useful (Flinn &

Stube, 2010). Many survivors had questions related to the presence of fatigue, the lack of

control they felt over it, and why it had such an impact on their lives (Flinn & Stube, 2010).

Methods of communicating with others presented additional challenges because fatigue is not

27
visible to others or may not be understood by caregivers, family, or friends. Education on the

experience of fatigue and communicating its effects were therefore crucial elements of an

educational training intervention program for post-stroke fatigue (Zedlitz et al., 2011; Clarke et

al., 2012). Medications to manage chronic conditions often present fatiguing side-effects

(Portenoy & Itri, 1999). There were also pharmacologic interventions that may directly address

fatigue in chronic neurological conditions (Briochi et al., 2009; Cheville, 2009; Shah, 2009;

Whiting et al., 2001). Proper diet has an impact on energy levels and may contribute to the

experience of fatigue (Portenoy & Itri, 1999). Because people with chronic illness may not be

aware of these factors, educational training interventions should include information about

their role as related to increased fatigue. This concept was supported by the research

conducted by Clarke et al. (2012) and Zedlitz et al. (2011) in post-stroke fatigue, Mathiowetz et

al. (2001) in MS, Cheville (2009) in CA, and Whiting et al. (2001) in CFS.

The role of rest and sleep. Sleep and rest are important factors for maintaining health,

performance of daily functions, and well-being (Sterr, Herron, Dijk, & Ellis, 2008). Sleep-related

disorders have been shown to be highly correlated with cerebrovascular disease as they are

linked with risk factors such as hypertension and heart disease (AHA, 2008; Bassetti, 2005).

Sterr et al. (2008) reported that 50% of stroke survivors indicated a change in their sleeping

habits after stroke and stated that there was a relationship between physical disability and poor

sleep quality unrelated to depression or anxiety. Some of these changes may have been

compensatory, such as longer duration of sleep in compensation for poor sleep quality (Campos

et al., 2005). It has been surmised that sleep quality may result from lack of resumption of

social and occupational daily activities after stroke as return of these activities may contribute

28
to reorganization of the sleep-wake cycle (Campos et al., 2005). The National Institute on

Neurological Disorders and Stroke (2009) reports that medication, degree of physical disability,

and anxiety are correlated with sleep-related disorders and need to be considered with therapy

interventions after stroke. It has also been noted that people with poor sleep are more aware

of pain (NINDS, 2009) or may experience poor sleep due to pain (Colle, Bonan, Gellez-Leman,

Bradai, & Yelnick, 2006). Sleep-related disorders are correlated with post-stroke fatigue (Park et

al., 2009) and linked with less favorable long-term outcomes (Bassetti, 2005). While obstructive

sleep apnea has responded to continuous positive airway pressure (CPAP) (Bassetti, 2005),

other sleep-related disorders have been successfully treated using a cognitive-behavioral

approach (Knoop, van Kessel & Moss-Morris, 2012; Kwekkeboom et al., 2012; Edinger & Means,

2005). Cognitive-behavioral therapy for sleep-related disorders may integrate concepts of

relaxation, stimulus control (a classical conditioning process to address timing and setting for

sleep), sleep restriction (a regimen to restrict time in bed to sleeping rather than awake time),

and sleep hygiene (healthy sleep habits) (Schwartz & Carney, 2012; Babson et al., 2010; Edinger

& Means, 2005). Given the evidence that sleep-related disorders play a role in post-stroke

fatigue, it is important to address issues of rest/sleep in therapy interventions for post-stroke

fatigue. The use of CBT incorporating various concepts addressing sleep-related disorders is

supported in the research protocols of Clarke et al. (2012) and Zedlitz et al. (2011).

Energy conservation. Interventions for fatigue depend on teaching specific strategies to

evoke behavioral change and lifestyle modification delivered using methods that compel

change rather than just provide information (Matuska et al., 2007; Bethoux, 2006). Energy

conservation techniques are commonly used in occupational therapy to help persons with

29
chronic conditions manage their daily activities (Mathiowetz et al., 2005). Occupational therapy

is uniquely qualified for this role due to knowledge about energy conservation principles

including time management, efficient body mechanics, environmental modification, and task

performance (Mathiowetz et al., 2001). Energy conservation involves the concept of a ‘pool of

energy’ which can be managed in terms of adding to and withdrawing from energy stores

(Bethoux, 2006; Packer et al., 1995). Common strategies include: analyzing and modifying daily

activities, prioritizing activities to balance work and rest throughout the day, delegating tasks to

others, using proper positioning of one’s own body and objects for motor efficiency, and

conserving energy through the use of adaptive devices. Research suggested that persons who

do not feel as if they have the ability to change their fatigue experience (lack a sense of self-

efficacy) reported that it has a greater impact on their daily lives (Di Fabio et al., 1998).

Interventions taking a psycho-educational approach to increase self-efficacy were supported in

the literature (Mathiowetz et al., 2007; Bethoux, 2006; Mathiowetz et al., 2005; DiFabio et al.,

1998). Learning these concepts and interacting with other people who experienced fatigue

were considered the most important components by participants in the intervention studies

(Cheville, 2009; Mathiowetz et al., 2001; Sharpe et al., 1996).

Physical activity. The overall advantage of physical activity in maintaining energy levels

has been widely reported (Cheville, 2009). Inactivity results in muscle catabolism, and

prolonged rest can exacerbate fatigue. Activity also reduces stress (Dimeo, Rumberger, & Keul,

1998), may result in increased sleep quality, and reduced falls by as much as 30% in those at

risk for falls (Physical Activities Guidelines Advisory Committee, 2008). Physical activity

promotes feelings of “control, self-esteem, and independence” (Winningham, 2001, p. 992).

30
After stroke, “nervous system regenerative capability is greater than previously thought and

early initiation of tailored programs and perseverance through the first two years is important”

(Bassey, 2000, p. 28). Activity should start with what a person is used to and slowly increase in

intensity while accounting for individual factors such as mental status, type of activity, intensity,

frequency, duration, and progression (Cheville, 2009). Home-based interventions have been

shown to be effective (Duncan et al., 1998). The goals for physical activity are to prevent

complications from prolonged inactivity, to decrease the recurrence of stroke, and to increase

aerobic fitness (Gordon et al., 2004). Studies support incorporating activities to improve aerobic

fitness, strength, flexibility, neuromuscular functions of balance, and bimanual coordination

(Gordon et al., 2004; Duncan et al., 1998). According to the Physical Activities Guidelines

Advisory Committee (2008), 2.5 hours per week of moderately to vigorously intense activity

achieves the desired outcomes of aerobic fitness. This translates to 30 minutes per day, five

times per week and is supported by research (Cheville, 2009) showing support for repetitive

movement (e.g., walking) and aerobic training at 75-80% maximum heart rate for 20-30

minutes, three to five times per week (Cheville, 2009) to address fatigue in chronic conditions.

The focus of graded exercise is not to push to the point of exhaustion but to maintain

function by reducing overall debility (Levine & Greenawald, 2009) and counteract impairments

that result from chronic disease; e.g., loss of muscle mass, decreased cardiac reserve, and

impaired pulmonary ventilation (Winningham, 2001). The research protocols which have

incorporated physical activity include: Zedlitz et al. (2011) (post-stroke fatigue) and Dimeo et al.

(1998) (CA fatigue). Zedlitz et al. (2011) incorporated graded activity for endurance, muscle

strength and flexibility training into their treatment protocol for out-patients experiencing post-

31
stroke fatigue. The purpose was to enhance physical fitness as well as to change participants

thinking about their physical ability. Groups of four received two weekly treatment sessions,

each two hours in duration, for 12 weeks using principles for progressively increasing aerobic

intensity (increased total treadmill walking time as well as increased incline) and muscle load

(weight lifting and core muscle exercises adapted for individual needs). Results from a pilot

study by these authors were encouraging in terms of increased heart rate and muscle strength

while the multi-center study is still in progress but showing positive preliminary results (Zedlitz

et al., 2011).

This section provided research support for the inclusion of education on the

phenomenon of fatigue, the role of rest and sleep, energy conservation, and physical activity as

components of an educational training program for post-stroke fatigue. The following section

examines the theoretical support for such an intervention program.

Theoretical Support for Group-Based Psychosocial Intervention in Managing Disabling

Conditions

The concept of health has undergone significant changes in recent years. Beginning with

the WHO’s (2001) revision of their disease classification system into ICF, attention has begun to

shift from physical aspects of recovery as measures of successful outcome toward quality of life

and well-being in an atmosphere of client-centered treatment. This shift adopts a bio-psycho-

social model in which health is not seen as solely the absence of disease but also the

management of chronic disability in conditions such as stroke (WHO, 2001). Management of

disease and disability has been developed using the cognitive behavioral approach in which

persons with chronic conditions are provided with skills to take greater control of their state of

32
health. This approach is based on Bandura’s Theory of Self-Efficacy (Bandura, 1995). In order to

provide the foundation for development of a group-based educational training program for

post-stroke fatigue proposed in this paper, a review of self-efficacy theory, cognitive behavioral

therapy, and the role of occupational therapy are presented here.

Self-efficacy theory. The idea that people’s health rests, in part, in their own hands has

gained acceptance in recent years. Lifestyle habits are seen as having a pivotal role in health

maintenance. Perceived self-efficacy refers to “beliefs in one’s capabilities to organize and

execute the courses of action required to manage prospective situations” (Bandura, 1995, p. 2).

Efficacy beliefs affect consideration of changing health habits, perseverance and motivation to

begin a course of change, and maintenance of those changes over time. Self-efficacy requires

one to build skills to influence motivation and behavior. Effective programs to promote

healthier living require participants to monitor the behavior they wish to change, to set

individual goals to achieve successes toward broader behavior changes, and to utilize social

support in order to sustain the effort (Bandura, 1995).

Bandura (1995) identified four means by which self-efficacy is developed. The first and

most effective method was through mastery experiences, which represented successful actions

taken by the person wishing to change their behavior. As Bandura stated (1995, p. 3) it “is not a

matter of adopting ready-made habits. Rather it involves acquiring the cognitive, behavioral,

and self-regulatory tools for creating and executing appropriate courses of action to manage

ever-changing life circumstances”. Bandura identified four components of intervention

effective in providing mastery experiences relative to health behavior: increasing awareness

and knowledge of health risks; developing self-regulatory skills for control over health habits;

33
providing repeated opportunities for practice of new skills; and drawing on social support to

maintain changes. The second influence was achieved through vicarious experiences gained by

observing the successful actions taken by social models. It was critical that the people observed

be seen as similar to the individual; if they were very different, they would not influence

behavior changes. Social participation was the third method identified. The idea was that

people will make the effort to change behaviors and maintain that change if they are verbally

(socially) persuaded that they have what it takes to be successful. This influence to make the

attempt then cycles into self-affirmation of the necessary skills through success experiences

and perpetuates self-efficacy. The last method, physiological arousal, was identified as a

combination of enhanced physical abilities, reduced stress and tendencies toward negative

emotions, and more accurate interpretation of bodily states. Self-efficacy beliefs developed as

a result of complex cognitive processing and were positively correlated with the intention to

engage as well as the actual engagement in health promoting behavior. Once in place, they

contributed strongly to the level and quality of human functioning (Bandura, 1995).

The application of self-efficacy theory using a group based approach in chronic disease

treatment was supported in the literature. Education-based self-management interventions

have been used to benefit persons with osteoarthritis (Allegrante & Marks, 2003), chronic

obstructive pulmonary disease (Bourbeau, 2003), CA (Haas, 2000), and chronic pain (Arnstein,

Caudill, Mandle, Norris, & Beasley, 1999). As an example, Lorig et al. (2001) assessed health

status, healthcare utilization, and self-efficacy outcomes for several chronic diseases (heart

disease, lung disease, stroke, and arthritis) using the Chronic Disease Self-Management

Program (CDSMP). The CDSMP intervention was a peer-led, community-based program of

34
seven weekly sessions. Content addressed exercise, cognitive symptom management, nutrition,

sleep management, medication use, community resources, managing emotions,

communication with health professionals, and health-related problem solving. Data was

collected from 831 participants at baseline, at one-year, and at two-year follow-up. Emergency

room and outpatient visits were reduced and self-efficacy increased for the CDSMP

participants, leading to the conclusion that it provided a low cost means of improving health

status in diverse chronic conditions.

Cognitive behavioral therapy (CBT). Cognitive behavioral therapy involves cognitive

processing as a fundamental aspect of treatment that attempts to change distorted thinking

and unrealistic goals and to develop a knowledge base for problem solving (Bruce & Borg,

2002). CBT developed from the merger of Beck’s cognitive theory, Bandura’s self-efficacy

theory in social psychology, and some tenets of behavioral theorists. The result was an

emphasis on the “role of cognitive processes in understanding behavior, developing self-

control… and furthering the efficacy of behavioral intervention” (Bruce & Borg, 2002, p. 164).

Bandura’s (1995) work most closely supports one of the underlying premises of

occupational therapy: that active engagement (doing) results in change (adaptation). In this

way, CBT moved away from the reliance on verbal methods of intervention and toward

experiences that allowed the person to feel capable of success. Using CBT, the therapist acts as

an educator-facilitator who provides structured experiential and self-directed learning

opportunities (Bruce & Borg, 2002). Therapy sessions begin with a verbal component during

which information and the rationale behind activities is provided. Discussion is encouraged to

allow frequent feedback to participants about specific behaviors and thoughts. The session

35
proceeds with meaningful activities to encourage cognitive and skill development and to allow

participants to practice techniques for understanding and to problem solve resources for any

difficulties they encounter. Homework is a common aspect of CBT as it provides an opportunity

to apply the new skills and resources in context. The homework assignments become the focus

of discussion at the subsequent CBT session to reinforce positive behaviors and to offer

resources for obstacles encountered. In CBT, it is the sense one has of one’s own efficacy that

influences goals, problem-solving, and participation as these are related to health maintenance

and prevention of functional problems. When cognitive behavioral techniques are used

effectively they “foster adaptive behaviors, promote successful management of health-related

problems, and increase control and self-efficacy over the consequences of symptoms” (Shevil,

2008, p. 19). Use of cognitive behavioral processes has been recommended in chronic

conditions (such as stroke). The techniques of CBT aim to increase one’s knowledge and to

strengthen that knowledge into skill building through active problem solving. Their benefit

comes from the attention to practical problems, provision of information (knowledge and

resources) about the problem to promote decision-making, and empowerment of individuals to

take control of their health, especially with problems that require daily management (like

fatigue) (Bruce & Borg, 2002).

CBT has been researched in people with CA (Gielissen et al., 2007), CFS (Prins et al.,

2001), MS (Thomas et al., 2010), arthritis (Lorig, Mazonson, & Holman, 1993), and insomnia

(Edinger & Means, 2005; Schwartz & Carney, 2012). As an example, Prins et al. (2001)

compared three groups with CFS; one received CBT, another received guided support, and the

last was considered the control condition by experiencing only the natural course of the

36
disease. Measurements were taken of fatigue severity using the Checklist Individual Strength

and functional impairment using the Sickness Impact Profile. CBT was found to be significantly

more effective for both measures taken than either the control (natural course) or alternate

treatment (guided support) conditions (Prins et al., 2001).

The role of occupational therapy. The foundation of occupational therapy (OT) is the

provision of activities to increase a person’s engagement in occupations (everyday activities) to

support participation (AOTA, 2014). The guiding principles of OT, found in the OTPF (3rd ed.)

(AOTA, 2014), incorporated concepts from the ICF to reflect current practice since the ICF

acknowledged that health was affected by activity and participation (WHO, 2001). The

combined use of tasks and activities with practice, feedback, and discussion is at the core of OT

intervention. For OT intervention to be successful, clients must be provided with opportunities

to practice new strategies and skills allowing change in performance to occur through active

engagement (doing). Since stroke is now viewed as a chronic condition, it requires survivors to

engage in activities to create behavior and health changes in order to increase quality of life

and reintegration (Wolf, Baum, & Connor, 2009).

The theory of occupational adaptation supports group-based intervention as it

addresses the person, the occupational environment, and the interaction of the two. The OT

group leader uses interactive reasoning and clinical reasoning to provide a supportive

environment where experiential learning can occur among group members. This learning

develops from the structure of the activity (naturally occurring demands for performance), the

immediate skill practice provided in the group format (demonstrated ability to adapt), and the

success experienced through adaptations that meet the needs of the person and group

37
members (Schultz, 2009; Schwartzberg et al., 2008). An occupational therapist as leader grades

the activities to provide progressive challenges and success experiences for group members; in

the terms of self-efficacy theory, mastery experiences, and physiological arousal. Group

intervention also provides a forum for vicarious experiences as individuals learn from the

experiences of others with whom they are interacting.

A Theoretical Basis for Group-Based Rehabilitation Therapy

Group-based intervention has been a valued method used in occupational therapy since

the origin of the profession (Schwartzberg et al., 2008). Grounded in the moral treatment

period, the use and focus of groups has evolved as influenced by socioeconomic and political

forces. The functional group model was first developed in mid-1980s “to incorporate the use of

purposeful activity and meaningful occupation into the process and dynamics of group work”

(Schwartzberg et al., 2008, p. 84). Five areas of research contributed to the development of the

functional group model: (1) group dynamics (the interrelationships of group members); (2)

effectance (the idea that people are interested in being active and this is self-motivating); (3)

needs hierarchy (people have needs arranged in terms of importance and unmet needs are the

source of motivation); (4) purposeful activity (a method of meeting needs); and (5) adaptation

(engaging in personally meaningful occupations results in learning or overcoming a challenge

situation). Benefits of groups are that members act as models of behavior through the active

give-and-take process of the social system of a group and that participants gain a sense of self-

worth and self-efficacy by actively engaging in the group exercises (Schwartzberg et al., 2008).

Assumptions of functional groups, as was used for the current study, include encouragement

for each member to take charge of meeting their individual needs, that purposeful activities

38
presented in groups are effective in improving individual levels of performance, and that active

engagement in a group facilitates development and maintenance of occupational skills (i.e.,

ADL or leisure) (Schwartzberg et al., 2008). Group-based educational training seems to be an

ideal forum for promulgating cognitive-behavioral strategies that may reduce post-stroke

fatigue and its impact on daily activities.

Group-Based Therapy for Post-Stroke Fatigue

There is a glaring lack of progress into the investigation of interventions for post-stroke

fatigue. This is true despite the overwhelming evidence acknowledging post-stroke fatigue as a

significant concern itself and as a major source of decreased participation in daily activities.

Research on pharmacological interventions for post-stroke fatigue has been inconclusive.

Studies examining group-based fatigue management for other neurological disorders, however,

suggest a promising approach that may be applicable to the treatment of post-stroke fatigue.

Self-efficacy theory provides support for the use of a cognitive-behavioral approach to post-

stroke fatigue interventions.

To date, two studies have been published that address post-stroke fatigue using a

group-based educational approach. However, as reviewed previously, these studies differed

from the current research study in important ways. Zedlitz et al. (2011) did not include

community-dwelling stroke survivors, had the group intervention provided by a

neuropsychologist complimented by individual physiotherapy sessions, and reported

inconsistent application of cognitive behavioral techniques. The study did report successful

reduction of fatigue but focused performance outcomes on strength, endurance and walking.

The second study by Clarke et al. (2012) included stroke survivors in the acute stage of

39
recovery, did not include a measure of functional performance to link to fatigue, and the

reduced fatigue reported did not reach statistical significance. Intervention was provided by

clinical psychologists who are not skilled in addressing limitation in everyday activity

performance.

The current study proposed to determine whether a group-based educational training

program could be effective as an intervention for post-stroke fatigue. This study included the

development and evaluation of a group-based educational training program to increase self-

efficacy and problem-solving strategies in stroke survivors with fatigue to address these

shortcomings. Chapter Three describes the research plan and its methodology.

40
 Chapter Three: Methodology

Introduction

The purpose of this study was to provide evidence that a group-based

educational program could be successful in relieving chronic post-stroke fatigue and improving

participation in daily activities. This section provides details about the chosen method including

hypotheses, participant selection, intervention, measurement tools, procedures and statistical

analysis of the data collected.

Approval

The researcher received approval for this study from the Institutional Review

Committee Panel B: Social/Behavioral Research at Virginia Commonwealth University. The

approval letter is in Appendix A. A copy of the Informed Consent is also included in that

Appendix.

Hypotheses

The study examined the premise that participation in a group-based fatigue

management training program for people with chronic fatigue post-stroke would decrease

fatigue and increase functional activity. Study hypotheses included:

 HA1 = The severity of self-reported fatigue post-stroke would be reduced after

participation in the training program as indicated on the Fatigue Severity Scale.

41
  Ho1= The educational program would have no effect on the severity of fatigue

post-stroke as measured by the Fatigue Severity Scale.

 HA2= The self-reported functional impact of fatigue post-stroke would be

reduced after participation in the training program as measured by the Physical

Self-Maintenance Scale + Instrumental Activities of Daily Living.

 HO2= The functional impact of fatigue would not change after participation in the

training program, as measured by the Physical Self-Maintenance Scale+

Instrumental Activities of Daily Living.

Design Rationale

The study protocol was modeled on a group-based intervention for fatigue management

that had proven to be successful for people with MS (Mathiowetz et al., 2001) adding

components to address issues found to impact fatigue in CA (Portenoy & Itri, 1999), CFS

(Whiting et al., 2001), and post-stroke fatigue (Clarke et al., 2012). The study design

incorporated principles of cognitive-behavioral therapy and self-efficacy theory using a group-

based format. The intervention program was intended to foster group interaction and active

problem solving on the part of the participants. Specifically, the concepts supported were:

 Group-based intervention provided key elements of self-efficacy theory; namely

mastery experiences, vicarious success, and social models;

 Program format incorporated lecture, written materials, practice time, and

homework to address multiple learning styles;

 Active problem-solving was encouraged by asking participants to practice

learning at home and to share difficulties and successes with others in the group;

42
  Groups of 8-10 members are optimal for psycho-educational group process

(Ettin, Heiman, & Kopel, 1988).

Seven measurement tools were used in this study (refer to Table 1). Since other

conditions result in fatigue, some measures served to inform inclusion/exclusion decisions that

also involve depression, sleep-related disorders, and motor and cognitive limitations.

Assessments of changes to the experience of fatigue and changes to the impact fatigue had on

daily activities were used as the outcome measures. The intent was first to show that post-

stroke fatigue and its impact could be reduced and second to provide an occupational therapy

intervention for fatigue in chronic stroke.

Table 1

Participation Criteria per Assessment Tool score

Assessment Tool Cut-off Score

Demographic questionnaire Not applicable
Fatigue Severity Scale ≥ 4 indicates a high likelihood of fatigue
Physical Self-Maintenance- IADL Scale Not applicable
Center for Epidemiologic Studies- Depression ≥ 16 indicates a high level of depression
National Institutes of Health Stroke Scale ≤ 1 on level of consciousness, motor arm and
motor leg questions
Pittsburgh Sleep Quality Index ≥ 8 recommended for clinical populations
Intervention Satisfaction Survey Not applicable

Study Design

This mixed methods; quasi-experimental study included quantitative and qualitative

components. The quantitative design followed an A-B-C design specifically using a repeated

measures with double pre-test and double post-test (Shadish, Cook & Campbell, 2002).

Qualitative data was gathered using a satisfaction survey developed by the researcher to assess

program contents. Phase A was a seven-week, non-intervention period prior to intervention;

43
Phase B was the seven-week, intervention period; and, Phase C was the seven-week, post-

intervention period. To achieve the 20 participants needed for this pilot study, the research

protocol was repeated at three facilities. Group membership varied by site but ranged from 6 –

9 individuals. Table 2 outlines the procedures. The repeated measures design was appropriate

to capture change over time during non-intervention, intervention, and post-intervention

periods. This design provided the basis for comparison of change on the measures of fatigue

and ADL/IADL performance. Threats to validity from maturation, history, and regression are

reduced by measuring these variables before and after the intervention (Polit & Beck, 2008,

Shadish et al., 2002). Use of a second pre-test provided a measure of any change in function in

the absence of intervention as well as a means to examine biases in the determination of

observed effects. The use of multiple post-tests contributed to a more sound causal analysis as

the “ambiguity about temporal precedence of cause and effect” (Shadish et al., 2002, p. 158)

was reduced. This temporal separation of outcome measures allowed analysis of “carry-over”

effects of the treatment, which might then be more clearly attributed to the intervention.

In order to preserve integrity of the data, steps were taken to blind the researcher to

participant scores at every data collection point. An occupational therapy colleague of the

researcher agreed to participate as the Research Assistant. The Research Assistant had earned

her Doctorate in Occupational Therapy and specialty certification in Geriatric Care

Management. The Research Assistant received instruction on administration and scoring of all

research measures. The Research Assistant was present at all recruitment events in order to

explain the blinding procedures to potential participants. Upon recruitment, the Research

Assistant completed the first visit process and, in collaboration with the researcher, established

44
Table 2

Study Design and Assessment Timeline

Timeline by Group Phase

Recruitment Explained purpose and procedures of the study, distributed the
Group 1- Wk 1 informed consent for consideration, and scheduled a first visit one week
Group 2- Wk 18 later.
Group 3- Wk 25
First visit Collected informed consent, completed demographic questionnaire,
Group 1- Wk 2 administered first pre-tests (FSS and PSMS-IADL), and administered
Group 2- Wk 21 measures to determine inclusion (NIHSS, PSQI, and CES-D).
Group 3- Wk 25
Phase A Seven week long, non-intervention period began
Group 1- Wk 2-9
Group 2- Wk 21-28
Group 3- Wk 26-33
Phase B Administered second pre-test (FSS and PSMS-IADL); seven weekly, group
Group 1- Wk 10-17 intervention sessions began
Group 2- Wk 29-36 Intervention Satisfaction Survey completed during last group session
Group 3- Wk 34-41
Phase C Administered first post-test (FSS and PSMS-IADL); seven week, post-
Group 1- Wk 18-25 intervention period began.
Group 2- Wk 37-45 Second post-test administered during last week (FSS and PAMS-IADL),
Group 3- wk 42-49 conclusion of participation. Gift card winner selected and gift card
delivered.

the data collection timeline for all phases of the research for each group. The Research

Assistant administered all assessment measures. Communication occurred at least weekly

during the data collection period to assure continued adherence to the procedures. The

Research Assistant stored data in a locked filing cabinet in her office until completion of the

group’s research participation and then turned it over to the researcher for data entry and

analysis.

45
Determination of Variables

The dependent variables of this study were self-ratings of severity of fatigue and its

impact on ADL/IADL performance. Fatigue is defined as a subjective experience of lack of

energy, physical or mental exhaustion (Lynch et al., 2007). Fatigue was measured using the FSS;

a 9-item self-rating scale for which participants rated their agreement with the provided

statement. Level of impact of fatigue indicated how much of a problem it was relative to

participation in daily activities. Impact was measured using the PSMS-IADL Scale. (See

Appendix B through H for all research measures).

The independent variable was the educational training program. The intent of the

program was to reduce the experience of chronic fatigue post-stroke by providing educational

tools and interactive group experiences in areas that have been shown to have been successful

in reducing the fatigue experienced in other conditions (such as energy conservation and

activity) and which literature indicated may impact post-stroke fatigue (such as communicating

to others and sleep-related disorders).

Co-variables included depression, sleep-related disorders (such as sleep apnea), and

physical or cognitive limitations; these factors influenced the experience of post-stroke fatigue.

To reduce the possible effects of these variables, pre-assessment tools were used to measure

them. In the case of physical or cognitive limitations and presence of sleep-related disorders,

scores resulted in volunteer exclusion from the study based on predetermined limits. Presence

of social support, sex, age, and level of care (personal care versus independent living) were

analyzed to determine their correlation to the dependent variables.

46
Participant Selection

Convenience sampling was used for this study. Participants were recruited from

Personal Care or Independent Living areas of retirement communities in Lancaster and Berks

Counties in Pennsylvania (See Appendix I for recruitment flyer sample). In the Personal Care, or

Assisted Living level, residents are provided with assistance for activities of daily living,

coordination of services from outside health providers, and monitoring of activities for health,

safety, and well-being (personal communication Becky Weber, January 2014). Those who reside

in Independent Living are responsible for all activities but can be admitted to areas of increased

care as needed for changing health conditions.

Inclusion criteria for participation in the research study was: 1) self-reported diagnosis

of chronic stroke (at least one-year post event and a minimum hospitalization of one night to

exclude survivors of transient ischemic attack), 2) a minimum age of 18 years, 3) significant

levels of fatigue on the pre-test administration of the FSS, 4) absence of significant levels of

depression as measured on the CES-D, 5) absence of sleep-related disorders as measured on

the PSQI, 6) a determination of functional ability to participate in the group sessions as

measured by the NIHSS, and 7) completion of an informed consent. Exclusion criteria were: 1)

stroke occurrence less than one year ago or diagnosis of transient ischemic attack, 2) under 18

years of age, 3) lack of significant fatigue as measured by the FSS, 4) presence of significant

levels of depression, 5) presence of sleep-related disorders for which a physician visit will be

recommended, 6) inability to attend the education program due to physical, visual-perceptual,

speech, or cognitive limitations to the degree that the measurement tools cannot be completed

and active participation in the cognitive-behavior based intervention sessions are not possible,

47
and 7) incomplete or missing data on the measurement tools. Refer to Table 2 for

inclusion/exclusion scores for each measure used. Although the PSMS-IADL scale was used to

measure the impact of fatigue on daily function, some studies indicate that the impact of

fatigue is often masked by adaptations made to avoid the impact of fatigue by post-stroke

survivors who experience fatigue (Robison et al., 2009; Carlsson et al., 2004). Therefore, there

was no inclusion/exclusion score for that measurement tool. For all pre-test and post-test

procedures, the measurement tools were completed by Research Assistant in order to keep

results blind to the researcher for enhanced validity.

To measure depression (a symptom highly correlated with fatigue (Ingles et al., 1999),

the Center for Epidemiologic Studies-Depression (CES-D) tool was used. The Pittsburgh Sleep

Quality Index (PSQI) was used as a measure of sleep-related disorders. Sleep apnea has been

successfully reduced using Continuous Positive Airway Pressure (CPAP); any volunteer showing

sleep apnea issues, while excluded from the current study, was recommended to pursue a

sleep study. The National Institutes of Health Stroke Scale (NIHSS) was used to assess physical

impairments that would make participation in the group untenable (severely limited use of the

hemiparetic side, inability to follow directions or maintain attention for the intervention

program). A demographic questionnaire was completed in order to describe the study

participants. It included questions on age, gender, ethnicity, social support (presence of a

caregiver, spouse or family member to assist with self-maintenance or IADLs), and years since

stroke occurrence. An Intervention Satisfaction Survey was also used to collect participants’

perspectives on methods to improve future iterations of the group-based educational program.

All measurement tools are included in Appendix B through H.

48
 Led by the researcher, the educational program was offered three times in order to

ensure adequate participation for this pilot study (n= 20), while keeping the group size

manageable (8-10). Prior to the program, members of the retirement community were invited

to attend the program by placing flyers (Appendix I) in community mailboxes and identifying a

facility representative. The researcher and Research Assistant provided community-wide

information sessions as scheduled with the facility representative. Interested individuals were

encouraged to contact someone on the research team and had questions concerning the study

answered. Volunteers for each of the groups were offered the opportunity to participate in a

raffle drawing for $25 gift cards and three were awarded after completion of the study.

Description of the Setting

Participants for this research study were recruited from two continuing care retirement

communities in south-central Pennsylvania: Garden Spot Village and Phoebe-Devitt Homes.

Garden Spot Village is a non-profit, moderately sized continuing-care community in New

Holland, PA. It offers seniors independent living options as well as personal and skilled care

residency. It is a values-based community with a mission to enhance the lives of older adults.

Phoebe-Devitt Homes is not-for-profit organization of Phoebe Ministries, providing retirement

living facilities in 14 locations. The mission of Phoebe Ministries is to serve the needs and

enhance the lives of elders. Two sites were approached and agreed to participate in this

research study: Phoebe–Berks, and Phoebe-Allentown.

Residents of the Independent Living and Personal Care living areas were invited to

participate as they represented the population of chronic stroke survivors of interest to this

study. At both communities, a private dining room in the Village Center was used to provide the

49
educational sessions. The Center was where all residents collect mail and attend community

events and was centrally located within the community. The room was large enough to allow

practice activities as indicated in the program. Chairs were arranged in an open circle for the

presentation of the topic. During activity stations sessions, participants moved around as

indicated by the activity for practice and returned to the seated area for wrap-up. Restrooms

were available outside the private dining room for ready access.

The groups were held at a time that was convenient for the residents and avoided

alternate programming to the extent possible as coordinated with the facility staff. The groups

were held weekly between 9am and 1pm, which was considered ideal timing to not disrupt

sleep routines.

Measures

The objective of the research study was to determine if a group-based educational

training approach can be successful in decreasing the severity of fatigue and its impact on

participation in daily activities as measured by the FSS and the PSMS-IADL. The CES-D, PSQI, and

NIHSS were used to exclude participants who had scores indicating presence of co-variables

that may limit full participation in the educational program. Refer to Table 2 for scoring criteria

to determine participation.

Information about the participants was gathered using a demographic questionnaire in

order to describe the participants and make comparisons to the general stroke population as

indicated and to assure group equivalency. The measurement tools used in this research study,

of which some are self-report scales, are valid and reliable measures of the dependent variables

(fatigue severity and impact on ADL and IADL performance) and the co-variables (depression,

50
sleep-related disorders, and physical and cognitive impairment levels). (Refer to Appendix B

through H for copies of each assessment tool). Potential confounding variables of the presence

of social support, sex, age, and level of care (Personal Care versus Independent Living) were

analyzed for correlations to the fatigue experience. Self-report scales are advantageous to use

when assessing subjective experiences like fatigue that may be difficult to describe to others

but have the limitation of not being verifiable by observable behavior (Polit & Beck, 2008).

The FSS (Krupp, LaRocca, Muir-Nash, & Steinberg, 1989) is the most frequently used

measure of fatigue in the literature (Bethoux, 2006, Clarke et al., 2012). It is a nine-item self-

report questionnaire scale. Each item is graded one (strong disagreement) through seven

(strong agreement); the final score is the total of the items. The FSS has an internal consistency,

Cronbach’s alpha, of .93 and correlation to the Visual Analogue Scale of .69. Test-retest

reliability is .84. (Krupp et al., 1989).

The PSMS-IADL was developed in 1969 (Lawton & Brody, 1969) and is freely accessible

for use. It contains 30 items in the categories of toileting, feeding, dressing, grooming, physical

ambulation and bathing (the physical self-maintenance scale). Each item provides five

selections from independent to dependent but is scored dichotomously; 1= independent; 0= all

other choices. The IADL portion contains eight categories: ability to use the telephone,

shopping, food preparation, housekeeping, laundry, mode of transportation, responsibility for

own medications, and ability to handle finances. Each category provides three to five choices

differing in degree of independence with the activity with multiple levels resulting in a score of

one. Individual item scores are tallied for an overall sum. Results of reliability testing show

reproducibility coefficient of .95 and correlation coefficient (Pearson’s r) of .87 for the PSMS

51
and an inter-rater reliability of .85 for the IADL scale (Lawton & Brody, 1969). Validity was

tested via Pearson correlations which were in the moderate range of .31 to .74 supporting

validity of the measures compared to other functional measures (Lawton & Brody, 1969).

The CES-D (Radloff, 1977) is a self-administered, 20-item self-report measure of

depression, which asks participants to indicate the number of occurrences of feelings or

behaviors over the past week. Respondents indicate the frequency of feelings by circling a

number between zero (rarely) and three (most or all of the time) and the final score is the sum

of these ratings. The CES-D has a Cronbach’s alpha of .91 and test-retest of .67. In comparison

to the Raskin Depression Scales, concurrent validity of the CES-D is .8 (Locke & Putnam, 2010).

Because of the strong correlation between fatigue and depression, volunteers who had a high

score on the CES-D (>16) were excluded from participation.

The NIHSS is a 15-item measure of level of consciousness, eye movement, visual field

deficit, and motor and sensory involvement and has been shown to be predictive of both short

and long term outcomes for people with stroke. Items are scored by degree of severity using

weighted scores (Lyden et al., 1999). It is commonly used as a deficit classification tool in

clinical assessment and stroke research (D’Olhaberriague, Litvan, Mitsias, & Mansbach, 1996). It

was used in this study as measure of physical limitation to inclusion. Content validity was

attained by item selection based on expert opinion and literature review. Interclass correlation

coefficients were rated as .95 among neurologists; .94 between neurologists and nurses (Dewey

et al., 1999).

The PSQI is a self-rated questionnaire about sleep quality and disturbances over the past

month. Nineteen items are combined into seven component scores of subjective sleep quality,

52
time to fall asleep, duration of sleep, sleep efficiency, disturbances, use of medications for

sleep, and daytime functional impairment (Buysse, Reynolds, Monk, Berman & Kupfer, 1989).

Although developed for the psychiatric population, it has become a tool commonly used with

various diagnostic groups as well as normal participants to determine quality of sleep.

Carpenter and Andrykowski (1998) suggest a higher cut-off score than recommended by the

authors of the PSQI since the mean score for populations with sleep problems was 8.0 rather

than 5.0. Measures of reliability and validity resulted in an internal consistency of .83, test-

retest reliability of .85, sensitivity of 89.6% and specificity of 86.5% in differentiating good from

poor sleepers (Buysse et al., 1989). In this study, the PSQI was used to exclude participants with

possible sleep apnea. Anyone who tested positive for sleep apnea was referred to their doctor

for further assessment; no one required this referral during the study.

As this was a pilot study of the group-based intervention program, an Intervention

Satisfaction Survey tool developed by the researcher was used to gather data from participants

at the conclusion of the intervention in order to improve future iterations of the program.

Participants were asked to indicate overall satisfaction with the components of the sessions,

their expectations for future use of the strategies, attendance, and what additional information

they would have liked to have been included.

Materials

The group-based intervention was intended to achieve the following goals: to increase

participants’ knowledge related to post-stroke fatigue; to increase the participants’ self-efficacy

in managing post-stroke fatigue; and to provide participants with strategies to reduce the

effects of post-stroke fatigue on activity participation (refer to Table 3).

53
Table 3

Program Goals and Objectives

Program Goals Objectives

1. Increase knowledge related to post-stroke  Identify symptoms

fatigue.  Identify the impact of fatigue on
activity participation

2. Increase self-efficacy in managing post-  Report increased levels of control

stroke fatigue.

3. Provide strategies to reduce effects of post-  Name problems related to the fatigue
stroke fatigue for improved activity experience
participation.  Use strategies to generate solutions to
identified problems
 Communicate the impact of fatigue to
others, such as caregivers, family,
friends, or healthcare professionals

While the educational training program incorporated some concepts from the energy

conservation course developed by Packer et al. (1995) that were successful in addressing

fatigue in other conditions (Matuska et al., 2007; Mathiowetz et al., 2005; Mathiowetz et al.,

2001), components that address characteristics of post-stroke fatigue have also been

developed. Using the cognitive-behavioral approach, each session included information on the

specific topic, activities to practice the concepts, and assignment of homework for real-life

application. Each session began with a discussion of successes and failures with those

application attempts. Review of homework at the start of each subsequent session provided for

active problem-solving among the group members as well as mastery and vicarious success

experiences. Each participant was provided with handouts for each program session to highlight

key items of the presentation and to reduce the need for note taking, which may have

54
distracted the participants from full attention during the lecture presentation. Homework

assignments were provided via handouts and explained during the session. Participant notes

from their homework were used by the participants to track the strategies employed and

enhance recall of problem-solving attempts for group discussion.

Procedures

The education program was composed of seven weekly sessions, each lasting 60

minutes and led by an OT. The group format utilized a cognitive behavioral approach based on

self-efficacy theory and occupational adaptation theory. The purpose was to provide

participants with problem-solving strategies that could be applied to novel situations that arose

in daily living by providing mastery experiences, vicarious success, and social models to guide

learning (Bandura, 1995). The program presented information about post-stroke fatigue, sleep-

related disorders, managing energy using energy conservation concepts, and being active

according to the following session outline:

1. Understanding and communicating about post-stroke fatigue

2. Building energy: Pacing and reducing stress
3. Sleep-related disorders and their management
4. Building energy: Being active and modifying activities
5. Budgeting energy: Prioritizing and planning
6. Activity scheduling
7. Course review and goal setting

Each session began with a review of the homework from the previous session, moved to

presentation of that session’s topic including practice exercises, and concluded with a review of

the information, a clarification of the homework for the next session, and a reminder of the

date of the next session. This format allowed participants to apply the concepts presented

55
during the education sessions in their daily routine and bring concerns or issues back to the

group for assistance and problem solving. Homework was assigned as well to ensure practice of

the information and served as the basis for the problem-solving discussions (refer to Table 4 for

details on each session topic).

Initial assessment. The research study was explained during open forum sessions

sponsored by the facility. Volunteers, or interested individuals, were provided more detailed

information as requested during more private sessions. These volunteers were then provided

time (one week after recruitment) to fully consider participation. The Research Assistant met

with each individual in their home to complete the first visit after that week. This included

collection of the signed informed consent, completion of the demographic questionnaire, FSS,

PSMS-IADL Scale, CES-D, NIHSS, and PSQI (Refer to Table 1 for the timetable of assessment). A

numerical identifier was used on all forms in the event that data needed to be removed. These

procedures were followed for all 20 participants at all locations. All assessments were stored in

a portable, locked file box between meetings and will be stored for the duration of the study in

a locked file cabinet at the researcher’s home.

Non-intervention phase. To provide a comparison condition, participants received no

intervention for a period of seven weeks following acceptance into the study. At the end of this

time period, the Research Assistant scheduled a meeting to re-administer the FSS and PSMS-

IADL measures. Scores were tallied to be compared to the initial scores to determine if there

was a change in fatigue levels or its impact on daily activities.

Group-based educational intervention phase. The educational sessions began in a

lecture/discussion format led by the researcher. Each group session followed this format:

56
 Table 4

Intervention Program by Session.

Session Activity Homework

1 Discussed purpose, goals and format of the Explain fatigue to a friend and ask for help
program to complete an activity
Discussed terminology and current concepts Keep notes on difficulties and successes
about fatigue (invisible disabilities and with the homework and questions or
attitudes of others) lingering issues.
Developed strategies to communicate
effectively
2 Reviewed Homework 1 Create a rest schedule including activities
Discussed the importance of pacing and that are required and preferred
reducing stress Continue note taking of difficulties and
Practiced relaxation and elements of a rest successes
schedule
3 Reviewed Homework 2 List activities that were effective in
Presented terminology and concepts making you tired
(relaxation, stimulus control, sleep Develop three strategies to improve sleep
restriction, and sleep hygiene considerations) experience.
Generated group ideas on activities to make Continue note taking of difficulties and
you tired and ready for sleep successes and lingering issues or
questions.
4 Reviewed Homework 3 Complete the work area modification
Presented terminology and concepts on activity
being active, body mechanics/ergonomics, Continue note taking of difficulties and
and arranging work areas successes with modifications and any
Generated ideas on modification strategies lingering issues or questions
5 Reviewed Homework 4 Complete Activity Modification activity
Presented concept of building energy by Continue note taking of difficulties and
prioritizing and planning successes with modifications and any
Completed activity analysis form lingering issues or questions
6 Reviewed Homework 5 Complete weekly schedule
Presented concepts of balancing rest and Continue note taking of difficulties and
activity successes with modifications and any
Completed daily analysis worksheet lingering issues or questions
7 Reviewed Homework 6 In session: Complete Intervention
Established short- and long-term goals Satisfaction survey
Wrap-up: Discussed lingering concerns or
questions

57
1) discussion among participants focused on review of previous homework (15 minutes); 2) a

teaching session (15 minutes); 3) practice activity and homework (20 minutes); and 4) a

summary (review of the session, clarification of the homework, and reminder of the next

session date) (10 minutes). The first session began with an overview of the program and

introduction of members. Participants were provided with handouts as appropriate to reinforce

the topic of the day and to facilitate carry-over of the concepts in their home environments.

Handouts contained the information provided in the teaching portion of the session for easy

reference by participants. Participants were asked to take notes to record their successes and

challenges in completing the homework assignments; these notes formed the basis of the

group discussion that started each session. At the conclusion of the seven-week program,

participants again completed the fatigue and activity participation measures (FSS and PSMS-

IADL, respectively) with the Research Assistant.

Post-intervention phase. Seven weeks after the conclusion of the group-based

educational program, participants were contacted to complete the fatigue and activity

participation measures (FSS and PSMS-IADL) to allow analysis of the long-term carryover of the

information presented during the intervention.

Statistical Analysis

Demographics of the groups were summarized using measures of central tendency and

variance. Scores on the CES-D, the NIHSS, and the PSQI determined inclusion or exclusion and

were measured only at the first, pre-intervention data collection point. Scores on the measures

of the dependent variables of fatigue and level of activity participation (i.e., FSS and PSMS-IADL,

respectively) were compared across data collection points in order to test the hypotheses that

58
both the severity of fatigue and the impact of fatigue on participation in daily activities would

decrease after participation in the group-based educational training program. The statistical

software package SPSS version 22 and Excel tools were used to calculate the mean of the scores

from the double pre-intervention and post-intervention data collection points. A repeated-

measures analysis of variance (RM-ANOVA) was used to determine if change occurred

(significance p< .05). Since the same participants represent the different conditions of

measures; there was a relationship between scores. In order for the statistical analysis to by

valid, the variances of the differences between conditions must be equal. This is known as the

‘assumption of sphericity’ and was calculated using Mauchly’s test in SPSS (Field, 2009). If there

is a violation of sphericity, Mauchly’s test will provide a corrected F-statistic.

To analyze whether presence of social support, sex, age, or level of care influenced

fatigue or activity participation scores, these potential confounding variables were entered as

grouping variables in the RM-ANOVA. The categorical variables of age and sex were analyzed

using Chi-square (X2) to check for any relationship. Survey review was conducted on the results

of the Intervention Survey. Since this was a pilot study of the group-based educational program,

feedback gained from the survey results will be used to modify the intervention program to

better meet participants’ needs in future iterations.

Summary

Post-stroke fatigue is a common problem that may limit participation in everyday

functional routines. Emerging evidence suggests that group-based training in fatigue

management may be an efficient means of reducing the effects of post-stroke fatigue.

Evaluating intervention approaches for this pervasive symptom of stroke is important in order

59
for occupational therapists to address the participation goals of patients whom they treat. This

pilot study used a quasi-experimental, mixed methods design to assess the effectiveness of a

group-based educational training program in relieving fatigue severity and its impact on activity

participation experienced post-stroke. A convenience sample of stroke survivors (n=30) was

invited to participate in the research, which included a seven-week long, group-based

intervention. The group sessions provided content related to relief of post-stroke fatigue and to

foster active problem solving and lifestyle redesign recommendations among group members.

The FSS and PSMS-IADL measures were used to determine pre- and post- intervention fatigue

severity and impact on activity performance and an Intervention Satisfaction Survey (qualitative

format) was used to assess the effects of the educational training program. Data analysis (using

SPSS version 22) involved measures of central tendency for the demographic information (i.e.,

age, sex, and time since stroke). A RM-ANOVA was done to examine the differences between

the pre- and post-intervention FSS and PSMS-IADL measurements using the categories of

presence of social support, sex, age, race, and level of care as grouping variables. Age and sex

were analyzed using chi-square analysis to determine relationship. Tabulations of the

Intervention Satisfaction Survey responses were completed to judge the effectiveness of the

group-based program or its’ components from the participants’ perspectives. It was hoped that

the study would contribute (1) a standard intervention program to use during rehabilitation to

address post-stroke fatigue, and (2) support to the program’s effectiveness for relieving post-

stroke fatigue and the limitation to daily activity participation it causes. The results of the

statistical analysis are presented in the next chapter.

60
 Chapter Four: Results

Introduction

The aims of this research study were to: 1) evaluate the effectiveness of a group-based

educational program in reducing post-stroke fatigue; 2) determine if that reduced fatigue

improved participation in daily activities; 3) show that these improvements could be sustained

in the long term; and, 4) provide support for content of a group-based educational program.

These outcomes were evaluated using a RM-ANOVA design across four data collection points

using the FSS and PSMS-IADL measures. In addition, the potential influence of the presence of

social support, sex, age, and level of care were analyzed. As part of this mixed methods study, a

qualitative tool- the Intervention Satisfaction Survey- was also administered. Content analysis

on the participants’ responses was completed.

Nineteen volunteer participants completed all phases of the study. Descriptive

information on all participants and the statistical analysis of the measures are described in the

following sections. The results are presented in terms of the aims of this research study.

Characteristics of the Participants

There were 30 volunteers recruited to participate in this research study. At the first visit

(the time participants are asked to consider the informed consent), five volunteers declined

participation; two had moved from the facility (one to home, one to acute care); and, one was

going to be out-of-town for the duration of the intervention and declined participation. Upon

61
completion of the informed consent and eligibility measures, one person was excluded due to

NIHSS motor leg score of >1; this resident was not able to participate in any group session

either due to a schedule conflict. One resident withdrew three weeks into the group-based

intervention phase; follow-up interview indicated no concerns about the content, just lack of

comfort with the group-based discussions. Data from these 10 volunteers was excluded from

data analysis. Twenty participants completed Phase A (non-intervention) and Phase B (group-

based intervention); 19 completed Phase C (post-intervention) as one person transferred to

another facility at the conclusion of Phase B. Data from these 19 participants was used for RM-

ANOVA, while data from all 20 was used in other analyses.

Table 5 shows the distribution of the sample in terms of demographic information,

including age, sex, race, time since stroke (in years), and presence of a caregiver as divided by

level of care (Personal Care versus Independent Living) and overall. Age ranged in years from 74

– 100, with an overall average of 87.1 years (SD = 6.58). This range is the upper end of stroke

incidence statistics, which indicate 55-75 years to show higher incidence of stroke (AHA, 2014)

The ages of Personal Care residents averaged 90.45 years (SD =5.92); while Independent Living

residents averages 82.89 years (SD= 5.37). Females accounted for 65% of the participants

overall; 82% of Personal Care and 44% of Independent Living residents. This reflects the longer

average life expectancy for women. All participants were White; the absence of any participants

of color was not representative of stroke survivors nationally. Time since the stroke occurred

ranged from 14 months to 20 years. The average time since stroke was 5.99 years overall (SD=

5.58); 4.04 years (SD= 2.36) in Personal Care residents; and, 8.38 years (SD= 7.70) for the

Independent Living residents. Overall, 45% of participants lived with a family member who

62
Table 5

Descriptive Statistics of Demographic Information

Overall Personal Care Independent Living

Residents Residents
Variable n % or M n % or M n % or M
Age 20 M= 87.1 11 M=90.45 9 M= 82.89
<75 years 1 SD= 6.58 0 SD = 5.92 1 SD= 5.37
75-85 years 7 3 4
86-95 years 9 5 4
>95 years 3 3 0

Sex
Male 7 35% 2 18% 5 56%
Female 13 65% 9 82% 4 44%

Race
White 20 100% 11 100% 9 100%

Time since stroke (years) 20 M= 5.99 11 M= 4.04 9 M= 8.38

SD= 5.58 SD= 2.36 SD= 7.70
Presence of social support
Yes 9 45% 4 36% 5 56%
No 11 55% 7 64% 4 44%

provided social support; this represents 36% of Personal Care residents and 56% of

Independent Living residents with social support. The implications of the participants’

demographic characteristics on generalizability of the results of the current study will be

explored in Chapter Five.

Effect of Rehabilitation Approaches on Post-Stroke Fatigue

The first hypothesis of this research study was that participation in a group-based

educational program would reduce the experience of post-stroke fatigue. This was tested by

measuring levels of fatigue using the FSS. This measure was administered four times; at the

63
beginning and the end of a 7-week non-intervention phase; at the conclusion of a 7-week

group-based educational program; and, 7-weeks after that program had ended. Table 6 shows

the mean FSS scores and standard deviations at each date collection point. Figure 1 is a

representation of this data in graph form.

Table 6 shows that, after an initial rise in mean FSS scores during the non-intervention

phase (M =35.95 to M =40.47), fatigue declined after the intervention phase (M =30.31) and

continued that decline during the post-intervention phase (M = 26.58). The RM-ANOVA analysis

(shown in Table 7) indicated the decrease in mean FSS scores was statistically significant (p

<.05) only after the intervention phase, however. Since the same participants were tested in

each phase, the assumption of sphericity (i.e., that scores in different conditions are

independent of one another) cannot be assumed. Therefore, Mauchly’s test was used to assess

the variances of the differences between phases. In this case, Mauchly’s test was not significant

and the scores could be analyzed without correction. This allowed rejection of the null

hypothesis and indicated that the group-based educational program was successful in relieving

the experience of fatigue in chronic stroke. Since the change in FSS mean scores was significant,

the effect size r was calculated for Phase B (post-intervention). This resulted in an effect size r=

.64, which indicates a large effect.

Effect of Post-Stroke Fatigue on Participation in Daily Activities

The second hypothesis of this research study was that participation in daily activities

would improve if post-stroke fatigue were reduced. This was tested using the PSMS-IADL

measure, which was administered at the same four date collection points as had been done

with the FSS. Table 6 also shows the mean PSMS-IADL scores and standard deviations.

64
Table 6

Means and Standard Deviations for FSS and PSMS-IADL scores (n=19)

Measure M SD
Fatigue Severity Scale (FSS)
Non-intervention pre-test (pre-test 1) 35.95 10.54
Non-intervention post-test (post-test 1) 40.47 11.56
Group intervention post-test (pre-test 2) 30.31 8.81
Post-intervention post-test (post-test 2) 26.58 10.31
Physical Self-Maintenance-Instrumental Activities of Daily Living-
(PSMS-IADL)
Non-intervention pre-test (pre-test 1) 6.32 4.33
Non-intervention post-test (post-test 1) 7.31 4.68
Group intervention post-test (pre-test 2) 7.52 4.39
Post-intervention post-test (post-test 2) 7.36 4.72

FSS
60
55
50
45
40
35
30
FSS
25
20
15
10
5
0
Pre-test 1 Post-test 1 Pre-test 2 Post-test 2

Figure 1. Mean scores on the FSS at the four data collection points.

65
 Table 6 shows that participation in daily activity showed a trend toward increased

participation during the non-intervention (M = 6.32 to 7.31) and intervention phases (M = 7.36),

but this trend declined slightly in the post-intervention phase (M = 7.36). Figure 2 shows this

data in graph form. The RM-ANOVA (shown in Table 7) indicated that none of these changes

reached statistical significance. As previously explained, Mauchly’s test of sphericity was used

to assure equal variance in the difference in mean scores. For the PSMS-IADL, this value was

significant, which meant that a corrected value was applied. This correction did not change the

lack of statistical significance of the mean PSMS-IADL scores. This result caused acceptance of

PSMS-IADL
14
13.5
13
12.5
12
11.5
11
10.5
10
9.5
9
8.5
8
7.5
7
6.5 PSMS-IADL
6
5.5
5
4.5
4
3.5
3
2.5
2
1.5
1
0.5
0
Pre-test 1 Post-test 1 Pre-test 2 Post-test 2

Figure 2. Mean scores on the PSMS-IADL at the four data collection points.

66
Table 7

Results of RM-ANOVA for FSS and PSMS-IADL Mean Scores across Phases (n=19)

Measure Sum of Squares df Mean Square F Significance

FSS: Phase A 389.26 1 389.26 1.496 .237
Phase B 1960.47 1 1960.47 12.423 .022
Phase C 265.32 1 265.32 1.474 .240
PSMS-IADL
Phase A 19.00 1 19.00 3.054 .098
Phase B .842 1 .842 .153 .700
Phase C .474 1 .474 .024 .878

the null hypothesis, which stated that participation in daily activities would not change due to

reduced post-stroke fatigue.

Possible Influence of Demographic Characteristics

The variations in presence of social support (i.e., living with a person who provided care

routinely), age, sex, and/or level of care (i.e., Personal Care or Independent Living) were

anticipated as potential influences on fatigue (FSS scores) and/or participation in daily activities

(PSMS-IADL scores). Therefore, these characteristics were used as grouping variables to test

their influence on the results. For purposes of analysis, participants were placed in age groups.

Table 5 provided these characteristics by participant.

The number of characteristics and the categories within each precluded use of chi-

square analysis using contingency tables. A log-linear analysis would be indicated; however, the

assumptions required for log-linear analysis (i.e., expected cell count >1 and <20% of the cells

have under five cases) were not met. Therefore, one-sample chi-square analysis for presence of

social support, age, sex, and level of care was completed. The obtained values for presence of

social support (X2 =.2), sex (X2 = 1.8), and level of care (X2 = .2) were less than the critical value

67
(df = 1; p < .05; critical value = 3.84), indicating that the distribution of participants across

groups was not significantly different. The distribution across age groups (X2 =8) exceeded the

critical value of 7.82; indicating unequal distribution. Only one participant was less than 75

years old; when that potential outlier was removed from the calculation, the assumption of

equal distribution was achieved (X2 = 2.85; df =2, p <.05, critical value = 5.99). The distribution

of ages was generally reflective of stroke incidence statistics. Implications of these

characteristics will be discussed in greater detail in Chapter Five.

To assess whether these potentially confounding variables influenced the scores on the

measures of fatigue or participation in activities, a RM-ANOVA was completed with presence of

social support, sex and level of care. This data is presented in Table 8; no values were found to

be statistically significant (p <.05).

Feedback on Post-Stroke Fatigue Program Effectiveness

The final aim of this research study was to provide support for the content of the group-

based educational program on post-stroke fatigue. In order to gather information on

effectiveness, participants were asked by the researcher to complete an Intervention

Satisfaction Survey as part of the last group session. This qualitative survey asked participants

to indicate how confident they felt in applying the post-stroke fatigue principles covered during

the group sessions and to provide suggestions for improvement in terms of additional topics or

areas of concern. A total of seven participants completed the survey tool individually. The

others chose to use it as a guide to an open group discussion about the program and the

research process. These comments were noted by the researcher and will be presented here.

68
Table 8

Results of RM-ANOVA for FSS and PSMS-IADL Grouped by Sex and by Setting (n=19)

Variable Measure by data collection df Mean F Significance

point Square
Presence of FSS
social support Non-intervention 1 118.948 .443 .515
Group intervention 1 182.737 1.169 .295
Post intervention 1 79.195 .426 .523
PSMS-IADL
Non-intervention 1 1.900 .293 .595
Group intervention 1 1.769 .309 .586
Post intervention 1 22.926 1.175 .293
Sex FSS
Non-intervention 1 106.356 .395 .538
Group intervention 1 14.860 .089 .769
Post intervention 1 33.434 .171 .679
PSMS-IADL
Phase A 1 2.036 .315 .582
Phase B 1 2.729 .481 .497
Phase C 1 1.003 .048 .829
Level of care FSS
Non-intervention 1 403.135 1.601 .223
Group intervention 1 143.015 .901 .356
Post intervention 1 559.264 3.547 .077
PSMS-IADL
Non-intervention 1 5.398 .861 .367
Group intervention 1 2.931 .518 .482
Post intervention 1 11.390 .564 .463

Survey Question 1 asked participants to indicate the number of group sessions they

attended. Most participants deferred to the Researcher for this information and did not fill it in

on their own. Seven individuals attended all seven group sessions; five individuals attended six

sessions; two individuals attended five sessions; four individuals attended four sessions; and,

two individuals attended three sessions. Average attendance was 5.5 sessions. The spouses of

three participants also attended the group sessions. The failure to attend a session was due to
69
health condition changes for two participants; three participants reported previously scheduled

activities. Participants were provided with materials from their missed sessions and given time

to ask questions about it at the close of the next group session.

Question 2 on the survey asked participants to rank their confidence in applying the

post-stroke fatigue principles covered in the group-based educational program. A Likert-scale

was used for indicating level of confidence with a range from ‘not confident at all’ (1) to ‘totally

confident’ (10). No descriptive terms were provided between the end points on the Likert-scale

(see Appendix H for the instrument). Participants’ responses indicated that they felt most

confident applying information on scheduling activities to include rest periods (M= 8.5). The

areas with the lowest range of scores included: understanding and communication needs

related to fatigue (M =7, range = 3-9); managing sleep problems (M = 6.43, range 3-9); and,

keeping fatigue from interfering with activities (M = 7.79, range 3-9). Managing sleep problems

was the item for which lowest average levels of confidence were reported. Table 9 presents the

range and average of the responses for each of the items. The group means for those who

attended four or fewer sessions did not appear to differ significantly from those who attended

five or more sessions on either the FSS or the PSMS-IADL, however.

A majority of the participants who completed the survey were part of a group held at a

site with a robust wellness program. Although the implications of this will be developed further

in Chapter 5, it would appear that there may have been a carryover effect of the level of

involvement. That is, participants were very active and had confidence in their ability to balance

activity with rest because they did it as a daily routine before the intervention.

70
Table 9

Intervention Satisfaction Survey Results

Question Response Range of

(average) responses
A. Understand and communicate needs related to fatigue? (n= 7) 7 3-9
B. Pace activities and use relaxation techniques? (n= 7) 6.86 6-9
C. Manage sleep problems? (n= 7) 6.43 3-9
D. Incorporate activity throughout schedule? (n= 6) 8.33 7-9
E. Prioritize and plan your daily routine? (n= 7) 8 4-9
F. Schedule activities and include rest periods? (n= 6) 8.5 8-9
G. Apply the strategies to future activities? (n= 7) 7.79 6-9
H. Keep fatigue from interfering with activities? (n= 7) 7.29 3-9.5

Question 3 on the survey asked for input on what additional information should be

covered during the group-based intervention program. Only two individuals provided written

comments: one added “see people earlier after their stroke perhaps in hospital or rehab”; the

other wrote that the program “was informational”. Every group discussion included a

recommendation that this information be given earlier in the stroke recovery process

(suggestions as to when this would be more useful included during acute care hospitalization or

inpatient rehabilitation). Most participants indicated that they had already adjusted their daily

routine and activity level to the fatigue occurrence and that getting the information earlier may

have increased the efficiency of those adaptations. The participants reported that knowing

about this issue, as well as being provided with strategies to reduce the impact of fatigue,

would have reduced their frustration and facilitated problem-solving.

Participants discussed that it was helpful to meet other people with similar

concerns/issues rather than thinking one was alone in experiencing them. This is supported

from the researcher’s note on the generalized relief expressed by participants of the first

71
session when fatigue was explained to be related to having had a stroke and not a personal

character flaw (i.e., lazy or ‘milking the stroke’). This related to decreased self-criticism for

feeling tired and needing to take rests.

Participants were also thankful that attention was finally being paid to the issue by

medical professionals, who they saw as not taking their concerns seriously. Some participants

took the opportunity to air the difficulties they experienced with their primary care physician

during this discussion. Relative to the issue of fatigue was the concern about overuse of

medications to address problems and the dosing of medication that failed to account for daily

routines or sleep schedules.

This input lent support to the content of the group-based educational program and to

the inclusion of a rehabilitation professional as group leader/facilitator. Recommendations for

the timing of post-stroke fatigue education, as noted above, are discussed in Chapter Five.

Summary

This chapter reported the results of the quasi-experimental mixed methods research

study designed to assess the effectiveness of a seven-session weekly group-based educational

training program in relieving fatigue severity and its impact on participation in daily activities

among chronic stroke survivors. A total of 19 participants were included in the repeated

measures analysis. Demographic information and the scores on the fatigue severity (FSS) and

level of activity participation (PSMA-IADL) were presented. Results from the RM-ANOVA

indicated a significant decrease in fatigue levels after the intervention phase that continued

post-intervention. The trend toward increased participation in daily activities did not reach

statistical significance and a potential ceiling effect is explored in Chapter Five. Grouping by

72
presence of social support, sex, age, or level of care (Personal Care versus Independent Living)

did not show a significant difference in scores for fatigue or level of activity participation.

Although sample size precluded use of log-linear analysis, one-sample chi-square analysis did

not show significant differences in distribution of the sample in terms of presence of social

support, sex, age or level of care. This supports the conclusion that the group-based

educational program was the source of the reduced fatigue. Intervention Satisfaction Survey

results revealed greatest reported benefit for scheduling activities and including rest; the least

confidence was reported for managing sleep problems. The next chapter will further discuss the

meaning of these results as well as the limitations of the current research and

recommendations for future research.

73
 Chapter Five: Discussion

Introduction

The intent of this research study was to determine whether post-stroke fatigue and its

impact on completion of daily activities could be reduced after participation in a group-based

educational program. The research study was also completed to provide support for the

content of a post-stroke fatigue program. The results indicate that the intervention significantly

reduces post-stroke fatigue and that the gains made are maintained for seven weeks after

group participation. There was a trend toward increased participation in daily activities that did

not reach statistical significance- a possible ceiling effect of the measure is explored here.

Participants indicated support for education on the topic and showed strongest confidence in

their ability to schedule activity and rest in their daily routines following the intervention.

In light of these results, this chapter will consider implications of the results presented in

Chapter Four. This begins with a consideration of possible explanations for the statistical

findings and their relationships to previous literature. Next, the clinical, theoretical, and

research implications of the study will be presented. Finally, a review of the limitations of the

study and suggestions for future research will be provided.

Rehabilitation Therapies Can Reduce Post-Stroke Fatigue

The results of this study show that post-stroke fatigue can be reduced through

participation in a group-based educational program and that the effect was large (effect size r=

74
64). This result extends the success seen for the pilot study by Zedlitz et al. (2011) who reported

reduced fatigue in 16 out of 23 stroke survivors during out-patient rehabilitation. The

intervention used in that study combined an individualized exercise regimen developed by a

physiotherapist with group-based cognitive behavioral sessions led by a neuropsychologist. The

results of the current study also verified the reduced fatigue Clarke et al. (2012) reported in

their pilot study of 19 stroke survivors. Clarke et al. (2012) had seen reduced fatigue after

participation in a psycho-educational group but the reduction did not reach statistical

significance. That research included a cognitive-behavioral group led by a psychologist for long-

term stroke survivors.

The current study is the first to offer a group-based educational program whose content

was developed specifically from successful fatigue management programs for other

neurological conditions, including MS (Mathiowetz et al., 2001), CA (Portenoy & Itri, 1999), and

CFS (Price, 2009). This supports the idea, presented in Chapter Three, which shared

characteristics of fatigue in neurological disorders makes the use of content from those

successful programs reasonable for application to post-stroke fatigue. Specifically, previous

research has suggested a role for education on: 1) the phenomenon of fatigue (Roding et al.,

2003; Flinn & Stube, 2010), 2) the role of rest and sleep (Sterr et al., 2008; Park et al., 2009), 3)

managing energy (Mathiowetz et al., 2001; Bethoux, 2006; Sharpe et al., 1996), and 4) physical

activity (Cheville, 2009 and Winningham, 2001). All of these were included as components of

the group-based educational program offered in the current study. Their effectiveness is

supported by the results, which show a reduction in post-stroke fatigue. Further discussion of

the program components will be included later in this chapter.

75
 The application of the principles of cognitive-behavioral therapy to chronic conditions

such as stroke had been suggested in the literature (Lorig et al., 1993; de Groot et al., 2003;

Shevil, 2008, Zedlitz et al., 2011, & Clarke et al., 2012); and is supported by the results of the

current study. The CBT principles applied in the group-based education program used in the

current study include providing progressive challenges (physiologic arousal) leading to

successful outcomes whether developed individually (mastery) or learned from the experience

of other participants (vicarious) (Bandura, 1995, Bruce & Borg, 2002). Zedlitz et al. (2011) had

identified the inconsistent application of CBT as a potential limitation to their study, which was

corrected in the current study and supported by the successful reduction of fatigue.

Another unique feature of the current study is the involvement of an occupational

therapist in providing the group-based educational program. Occupational therapists are skilled

in the use of groups (Schwartzberg, 2008) and their unique skills in adaptation and occupation-

based activity allows for the natural application of cognitive-behavioral techniques (AOTA,

2014; Schwartzberg, 2008; Bruce & Borg, 2003). The occupational therapist uses interactive and

clinical reasoning skills to foster a sense of confidence in group participants’ abilities to control

their health outcomes, or self-efficacy (AOTA, 2014). The results of the current study lend

support to a role for occupational therapy in using group-based educational programs as part of

stroke rehabilitation.

This study supports findings from research in other neurological conditions in which

fatigue reduction is achieved and maintained over time (Mathiowetz et al., 2007; Lorig et al.,

2001). Studies have shown that fatigue persists in chronic stroke (Cott et al., 2007; Naess et al.,

2005; Carlsson et al., 2004; Glader et al., 2002). However, previous research into post-stroke

76
fatigue (Zedlitz et al., 2011; Clarke et al., 2012) did not examine the long-term effects of fatigue

reduction, making this study the first of its kind to do so.

Participation in Daily Activities Was Not Changed

The results of this study show a trend of increased activity participation over time that

did not reach statistical significance. And that trend toward increased participation fell in the

post-intervention period, although not back to pre-intervention levels. This trend supports the

linked hypotheses of this research study that fatigue has an inverse impact on participation in

daily activities. That is, it was anticipated that if post-stroke fatigue was reduced, there would

be an increase in participation in daily activities. While it did not reach statistical significance, it

is important in that it supports that anticipated connection of fatigue and participation in daily

activity completion.

The results supported previous research linking fatigue to levels of activity participation

(Glader et al., 2002; van de Port et al., 2007). The lack of statistically significant changes

supports the suggestion by Ingles et al. (1999) that, in chronic stroke; adjustments have already

been made to activity participation to accommodate the fatigue experienced. These habits may

not be quickly changed despite the decreased levels of fatigue.

Participants in the current research were recruited from the Independent Living or

Personal Care areas of retirement communities and, as such, were more functionally

independent prior to intervention. Although the analysis of level of care and participation in

daily activity did not indicate that level of care was a significant variable, it seems reasonable to

suspect that level of care may have created a ceiling effect. The highest score obtainable on the

PSMS-IADL is 14, while the average initial score for all participants (n=20) was 6.32. At this level,

77
a person is completing all self-care and mobility independently as well as some higher level

tasks (for example, meal preparation, laundry and/or financial management). Given the

physical environment of Independent Living or Personal Care, access to a broader community is

not needed and therefore, limits are placed on how much improvement could be made in

functional performance.

Demographic Characteristics Influence Interpretation of Results

Potentially confounding variables did not appear to have a measurable effect as there

were no significant changes noted when the data was grouped by presence of social support,

sex, or level of care (i.e., Personal Care versus Independent Living). The ages of the participants

(refer to Table 5 in Chapter Four) reflected the age range common in stroke (AHA, 2014),

although there was a higher percentage of participants among the ‘old-old’ rather than more

equally distributed between ages 55 and older (age group with highest prevalence of stroke;

AHA, 2014).The higher percentage of women participants again supports national data on

stroke occurrence, which indicates that an older average age of stroke onset for women (X= 75

years compared to 71 years for men) to have stroke (AHA, 2014).

The absence of any participants of color is not representative of stroke survivors in

general; African-Americans have almost twice the risk of a first time stroke than Whites (AHA,

2014). Data was not available on comparisons of level of care within the national statistics, but

it seems reasonable that the fact that fewer of the oldest participants lived independently is

reflective of the known decrease in physical strength factors with increasing age.

78
Participants Felt Confident in Applying Techniques to Relieve Fatigue

For the participants who completed the Intervention Satisfaction Survey, averaged

ratings indicated a sense of confidence in their learning after participation in the group-based

educational program. It is of interest to note that the group of participants who provided

individual responses was among the most active of all participants. As mentioned in Chapter

Four, one particular site had a robust wellness program and a Wellness Coordinator who

monitored residence performance. This monitoring included computer-based check-ins of

exercise and activity participation; if there was a reduction in frequency or performance, a

contact was made by that Coordinator to assess potential status changes. This built an

expectation for scheduling activities and likely contributed to that area receiving the highest

average score for confidence in application. This result is supported in the literature, which

suggests a role for activity throughout the lifespan and in chronic stroke (Mead, Bernhardt, &

Kwakkel, 2012; Michael et al., 2006; Gordon et al., 2004).

The confidence reported in applying principles of sleep and rest complements previous

research supporting the use of a cognitive-behavioral approach for sleep problems (Knoop et

al., 2012; Kwekkeboom et al., 2012; Edinger & Means, 2005). Previous research has shown that

this is a critical area for maintaining health and performance of daily functions (Sterr et al.,

2008) and that they are highly correlated to cardiovascular disease (AHA, 2014; Bassetti, 2005).

During the recruitment process, many residents had concerns related to sleep. As a relatively

new area of concern in rehabilitation (AOTA, 2014), these concerns may not have been

addressed to the extent that other consequences of stroke had been. That lack of information

seemed reflected in the finding that this area had the lowest confidence rating.

79
 Participants did not always complete the homework (i.e., opportunities to practice skills

between group sessions and report on successes or problems), which may have contributed to

the less than total confidence reported. Perhaps group participation made them aware of the

strategy but without practice they were not as confident in independent application. However,

one person wrote that her lack of confidence in communicating with others was based on the

techniques provided not working when attempted. No other statement indicated that the

information was ineffective.

In discussion, the groups all reported that the information on fatigue would have been

more useful earlier in the recovery process. One participant proposed that it should occur in the

acute hospital or during in-patient rehabilitation. This verifies the finding by Flinn and Stube

(2010) that information is not provided at the right time or circumstances to be useful to stroke

survivors. It further supports a role for a group-based educational program on post-stroke

fatigue as an important part of stroke rehabilitation.

One of the aims of this research study was to support the program’s effectiveness for

relieving post-stroke fatigue; overall results of the satisfaction survey indicate that the topics

seemed relevant for the participants. This is significant in terms of providing tools for use in OT

practice, but the small number of responses limits the conclusion of effectiveness. This is an

area in need of further investigation.

Implications for Occupational Therapy Practice

To the best knowledge of the researcher, this is the first research study applying

principles of fatigue management in a group-based educational program led by an occupational

therapist for the post-stroke population. Previous research into interventions for post-stroke

80
fatigue provided intervention by physiotherapists during the out-patient phase of rehabilitation

rather than in the chronic condition (> one year post event) used in the current research

(Zedlitz et al., 2011). The inclusion of an occupational therapist allowed physical activity to be

promoted beyond walking on a treadmill to improve gait. Another adjustment made in the

current research was to address fatigue in chronic stroke (i.e., more than one year post-event).

This is important in terms of providing interventions that are effective throughout the recovery

process.

The only other studies of post-stroke fatigue did not seek participants in the post-

rehabilitation, or chronic, stage of stroke (Zedlitz et al., 2011 & Clarke et al., 2012), and did not

include program components reflective of energy management, which were common in the

successful approaches used for other neurological conditions in the literature. There was no

assessment of the effectiveness of the program by the participants. Both of these elements,

which were considered to be limitations of the Clarke et al. (2012) study, were included in the

current research study.

Results from this research study indicated that post-stroke fatigue can be reduced

through rehabilitation therapies that incorporate CBT principles in a group-based educational

program, such as the one introduced here. In an environment of evidence-based intervention,

this provides a tool for rehabilitation professionals to address this consequence of stroke. This

is particularly important since management and prevention of post-stroke fatigue was recently

identified as a top ten research priority for stroke survivors, caregivers and health professionals

alike (Pollack et al., 2014). It is critical that the success of a post-stroke fatigue intervention

81
program get disseminated to OT professionals, stroke survivors, and caregivers in order to

address the stated need for this specific information among those very groups.

The lack of change in self-reported functional performance is of concern, however. From

a therapy viewpoint, intervention for fatigue alone in the absence of functional performance

changes would likely not be eligible for insurance coverage. Whether this lack of improvement

in functional performance is a result of the already high level of independence among the

participants or a reflection of the assessment tool, it would have an impact on OT intervention.

Future researchers may wish to include participants with lower functional performance scores,

in order to examine whether the intervention may have an impact on everyday activities or use

an ADL/IADL assessment tool that is more sensitive to change.

Considerations regarding assessments. When considering implementation of group-

based education for post-stroke fatigue, it is important to determine the best tools to measure

outcomes. In this regard, the self-report nature of both the FSS and the PSMS-IADL might be a

limitation. In addition, the PSMS-IADL is sensitive to small and even temporary changes. As a

bimodal rating measure, scores can change from independent (as score of 1) to needing

assistance (a score of 0) as a result of needing to use an ambulatory device (whether or not that

device is used independently) or an episode of incontinence (even if managed through use of

incontinence products). A measure that requires observation of performance may be more

robust in assessing the impact of decreased fatigue on functional performance.

Having participants who were already relatively independent within the level of care

suggests a potential ceiling effect of ADL and IADL performance, which was presented

previously in this paper. Given the high level of independent function, it may not have been

82
possible to measure any improvement as those changes may have been more qualitative than

quantitative in nature. This has implications for the selection of participants as well as the

selection of an assessment tool.

Considerations regarding intervention. Although the group-based educational program

introduced in this research was effective in reducing fatigue post-stroke and participants

reported confidence in their learning, the components have not been individually assessed. It

would be an important next step to further evaluate the program components. Use of

information from the successful interventions used for other neurological disorders worked in

this study, but may not represent the most effective means of addressing post-stroke fatigue.

As noted by the participants, timing of the intervention was not ideal for their needs.

Inclusion in the early stages of stroke recovery may be indicated. There is support for post-

stroke fatigue management to be a standard part of the stroke rehabilitation protocol, but the

timing of that intervention requires more research.

And, although participation in the group-based intervention did result in a reduction of

self-reported fatigue, it did not eliminate it. Average scores remained moderately high

indicating a role for chronic fatigue management.

Considerations of multiple impairments post-stroke. The participants in this research

study were screened to reduce the impact of co-occurring conditions or impairments (i.e.,

depression, motor ability for physical activity, sleep-related disorders, and cognitive

limitations). As these conditions or complications are common post-stroke, it would be

important to recognize that this intervention may not be as effective with a general stroke

83
population. It may be necessary to make adaptations to the program in order to assure benefit

for the stroke survivors with more physical and/or cognitive involvement.

Considerations regarding caregiver support. It is important to include caregivers in any

post-stroke educational program. In the current study, three spouses of stroke survivors

regularly attended the group sessions. One was critical for communication with an aphasic

participant; others were able to verify or critique participation statements or concerns related

to the session topic. Education on physical activity as an important component of building

energy and reducing fatigue is important as clients and their caregivers must become adept at

balancing activity with rest. Understanding the skills and abilities of stroke survivors as well as

understanding the need for rest is a key to the successful reduction of the impact of fatigue.

Managing participation expectations on the part of the caregiver(s) is another key component

to assuring best outcomes for the client and for the caregivers. Learning about the incidence of

post-stroke fatigue and the need to incorporate rest because of it may make the delegation of

daily task completion less frustrating.

Theoretical and Research Implications

The issue of self-efficacy. Cognitive-behavioral technique is showing increased evidence

of effectiveness in addressing methods to change health behaviors and improve health

outcomes. The current study asked for clients to rate their confidence in applying the content

of the educational program. While this is a component of self-efficacy, it does not capture the

entire construct and greater attention to development of self-efficacy may increase program

effectiveness. Measures of self-efficacy may be more robust in terms of demonstrating

intervention effectiveness, particularly for the ‘invisible’ conditions such as fatigue for which

84
finding an objective, observable measure is difficult. If post-stroke fatigue management

programs improve self-efficacy, there may be a stronger correlation to participation in daily

activities as well as overall improvement in quality of life.

Ecological validity. This study examined reduction of fatigue and improved participation

in daily activity with community-dwelling stroke survivors. This allowed the researcher to focus

on everyday activities, the unique feature of occupational therapy intervention, in context of

‘normal’ living rather than the constraints of institutional intervention. Group dynamics

resulted in topics receiving different emphasis between the three groups. While this improves

ecological validity, broad application of the results must be done with caution.

Considerations for the future. The hope of this researcher is that this study will lay the

foundation for future research on effective strategies to prevent post-stroke fatigue. Numerous

studies have indicated the prevalence of the problem (Stokes et al., 2011; Ingles et al., 1999; Di

Fabio et al., 1998) while also suggesting research to support an intervention program or tool.

The current environment in healthcare of the chronic nature of recovery (WHO, 2001), the

importance of participation as an outcome of intervention (Cott et al., 2007; AOTA, 2014), and

the demand for evidence-based interventions (Pollack et al., 2014; McGeough et al., 2009) all

call for research into this important phenomenon of stroke.

Suggestions for future research are to analyze the program contents for effectiveness

and the timing of delivery for efficacy in order to develop a standard intervention protocol. As

previously mentioned, the contents were based on the literature but may not be the only topics

that are important for this population. Exploration of the timing for implementation of post-

stroke fatigue intervention also needs to be completed as the current research suggested that it

85
may be less effective in the non-acute stages of stroke recovery. A time-series study might

allow determination of best timing for implementation during post-stroke recovery.

Lastly, the addition of a more robust qualitative aspect of the study is recommended.

Analyzing the discussions that occur during the group-based educational program sessions

might give better information as to the contents of most relevance to stroke survivors in

managing their fatigue. Increased use of homework notes or a fatigue journal would also

contribute to a better understanding of the application issues (successes as well as difficulties)

encountered by participants.

Limitations of the Research

This study reports significant results that impact stroke rehabilitation. However, there

are limitations that need to be considered. First, the sampled population is a very small and is

not representative of the general stroke population. Participants were volunteers who were

approached by staff members after receiving a general invitation from the research team; as

such they may differ in important ways from the stroke population as a whole. As noted in

Chapter Four, the ethnic/race and age distribution of participants does not match the AHA

stroke statistics (2014). The AHA (2014) reported that women have a higher lifetime risk for

stroke (one in five for women; one in six for men) and are slightly older on average at onset of

stroke (75 years versus 71 years for men). The “overall age- and sex-adjusted black/white

incidence rate ratio was 1.51” (AHA, 2014, e79). This lack of representativeness limits the

comparability of results to the larger population of stroke survivors.

Participants who did not experience co-occurring depression, severe cognitive or

physical impairment, sleep-related disorders or low sleep quality were deliberately chosen for

86
this study but this selectivity limits the generalizability of the results to the greater population

of stroke survivors. The sample was selected from retirement community residents in a discrete

geographical area in south-central PA, which also limits the application of results to all stroke

survivors. Considering that a majority of stroke survivors return home, it would be important to

explore the impact of a group-based educational program on post-stroke fatigue in the open

community as well. A randomized, controlled trial with a larger sample size is warranted.

The two measures used in this study (FSS and PAMS-IADL) rely on self-report, the

accuracy of which relies on full understanding of the questions and honesty in responses. There

was no objective measure used concurrently to assess the accuracy of responses. The

Researcher was blinded to the scores, however; through the utilization of the Research

Assistant for data collection. Participants were also aware that the Researcher was completing

this research in partial completion of a doctoral degree. It is possible that participants adjusted

responses, based on the Hawthorne effect, to improve that outcome.

Lastly, there are limitations related to the study procedures. One facility dropped out of

the research just after IRB approval and the search to find another interested site took some

time. This resulted in groups occurring at different time points; the first group completed

participation from February to June while the second and third groups ran from August through

December/January. It is possible that the groups could have differed in significant but

unknowable ways. There may have been a learning effect on the part of the research team;

experience running the first group may have influenced topic coverage in future intervention

programs for the Researcher; while the Research Assistant may have become more familiar

with the measures in subsequent administrations. Topics received different emphasis based on

87
the group dynamics, which enhances ecological validity but introduces caution for broad

application of the intervention.

Summary and Conclusion

With this dissertation, I have provided evidence that a seven-week group-based training

program can reduce the fatigue of stroke survivors, and that this reduction lasts for at least

seven weeks. Based on the data analysis, participation in a group-based educational training

program did result in a significant reduction in fatigue as measured by the FSS and a trend

toward increased participation in everyday activities that was not statistically significant.

Participants reported feeling most confident in their ability to schedule activity and rest

throughout their daily routine and least confident in managing sleep issues based on the

feedback on the group-based intervention. There was no significant change in participation in

everyday activity over the same time periods, although participation did show a trend toward

improvement. These results may not be generalized to the general stroke population due to the

small sample size and non-representativeness of the participants in terms of

color/ethnicity/race, and over-representation of the ‘old-old’ among the participants, who were

from retirement facilities in one geographical area of the country. It is recommended that this

study be replicated using a larger and more representative sample of the post-stroke

population.

The field of occupational therapy can benefit from these results as they provided

evidence in support of an intervention program that addresses an area of interest that has been

under-investigated in post-stroke recovery. Post-stroke fatigue needs more attention in esearch

as well as in practice and this project has provided a resource to clinicians to address that need.

88
 References

Allegrante, J., & Marks, R. (2003). Self-efficacy in management of osteoarthritis. Rheumatic

Disease Clinics in North America, 29, 747-768.

American Heart Association (AHA). (2014). Heart disease and stroke statistics: 2014 Update: A

report from the American Heart Association. Circulation, 125, e2-e220 DOI

10.1161/CIR.0b013e31823ac046.

AHA. (2008). Sleep apnea and cardiovascular disease. Journal of the American College of

Cardiology, 52(8), 686-717.

American Occupational Therapy Association (AOTA). (2014). Occupational therapy practice

framework: Domain and process (3rd ed.). American Journal of Occupational Therapy,

682(Suppl.), S1-S48.

Annoni, J-M, Staub, F., Bogousslavsky, J., & Brioschi, A. (2008). Frequency, characterisation and

therapies of fatigue after stroke. Updates in Clinical Neurology, 29, S244-S246.

Appelros,P. (2006). Prevalence and predictors of pain and fatigue after stroke: A population

-based study. International Journal of Rehabilitation Research, 29(4), 329-333.

Arnstein, P., Caudill, M., Mandle, C., Norris, A., & Beasley, R. (1999). Self-efficacy as a

mediator of the relationship between pain intensity, disability and depression in chronic

pain patients. Pain, 80, 483-491.

89
Astrom, M., Asplund, K., & Astrom, T. (1992). Psychosocial function and life satisfaction after

stroke. Stroke, 23, 527-531.

Babson, K., Feldner, M., & Badour, C. (2010). Cognitive behavioral therapy for sleep disorders.

Psychiatry Clinics in North America, 33, 629-640.

Bandura, A. (1995). Self-Efficacy in Changing Societies. Cambridge: University Press.

Barker-Collo, S., Feigin, V., & Dudley, M. (2007). Post-stroke fatigue – Where is the evidence to

guide practice? The New Zealand Medical Journal, 120(1264), 1-9.

Bassetti, C. (2005). Sleep and stroke. Seminars in Neurology, 25(1), 19-32.

Bassey, J. (2000). The benefits of exercise for the health of older people. Reviews in Clinical

Gerontology, 10, 17-31.

Bethoux, F. (2006). Fatigue and multiple sclerosis. Annales de Readaptation et des Medecine

Physique, 49, 355-360.

Bogousslavsky, J. (2003). William Feinberg lecture 2002: Emotions, mood, and behavior after

stroke. Stroke, 34, 1046-1050.

Bourbeau, J. (2003). Disease-specific self-management programs in patients with advanced

chronic obstructive pulmonary disease: A comprehensive and critical evaluation. Disease

Management Health Outcomes, 11(5), 311-319.

Brioschi, A., Gramigna, S., Werth, E., Staub, F., Ruffleux, C., Basseti, C., … & Annoni, J. (2009).

Effect of modafinil on subjective fatigue in multiple sclerosis and stroke patients.

European Neurology, 62(4), 243-249.

Bruce, M., & Borg, B. (2002). Psychosocial Frames of Reference: Core for Occupation-Based

Practice (3rd ed.). Thorofare, NJ: Slack Incorporated, 161-206.

90
Buysse, D., Reynolds, C., Monk, T., Berman, S., & Kupfer, D. (1989). The Pittsburgh sleep quality

index: A new instrument for psychiatric practice and research. Psychiatry Research,

28,193-213.

Carlsson, G., Moller, A., & Blomstrand, C. (2004). Consequences of mild stroke in persons < 75

years- A 1-year follow-up. Cerebrovascular Diseases, 16, 383-388.

Carpenter, J. & Andrykowski, M. (1998). Psychometric evaluation of the Pittsburgh Sleep

Quality Index. Journal of Psychosomatic Research, 45(1), 5-13.

Chari, V., & Tunks, E. (2010). Poststroke pain-but multiple mechanisms. Pain Research &

Management, 15(1), 24-26.

Chaudhuri, A., & Behan, P. (2004). Fatigue in neurological disorders. The Lancet, 363, 978-988.

Cheville, A. (2009). Cancer-related fatigue. Physical Medicine Rehabilitation Clinics in North

America, 20, 405-416.

Choi-Kwon, S., Choi, J., Kwon, S., Kang, D., & Kim, J. (2007). Fluoxetine is not effective in the

treatment of poststroke fatigue: A double-blind, placebo-controlled study.

Cerebrovascular Diseases, 23, 103-108.

Choi-Kwon, S., Han, S., Kwon, S., & Kim, J. (2005). Poststroke fatigue: Characteristics and related

factors. Cerebrovascular Diseases, 19, 84-90.

Clarke, A., Barker-Collo, S., & Feigin, V. (2012). Poststroke fatigue: Does group education make a

difference? A randomized pilot trial. Topics in Stroke Rehabilitation, 19(1), 32-39.

Colle, F., Bonan, I., Gellez-Leman, M., Bradai, N., & Yelnik, A. (2006). Fatigue after stroke.

Annales de Readaptation et des Medecine Physique, 49, 361-364.

91
Cott, C., Wiles, R., & Devitt, R. (2007). Continuity, transition, and participation: Preparing clients

for life in the community post-stroke. Disability and Rehabilitation, 29(20-21), 1566-74.

de Groot, M., Phillips, S., & Eskes, G. (2003). Fatigue associated with stroke and other

neurologic conditions: Implications for stroke rehabilitation. Archives of Physical

Medicine and Rehabilitation, 84, 1714 -1720.

Dewey, H., Donnan, G., Freeman, E., Sharples, C., Macdonell, R., McNeil, J., & Thrift, A. (1999).

Interrater reliability of the national institute of health stroke scale: rating by

neurologists and nurses in a community-based stroke incidence study. Cerebrovascular

Diseases, 9(6), 323-327.

Di Fabio, R., Soderberg, J., Choi, T., Hansen, C., & Schapiro, R. (1998). Extended outpatient

rehabilitation: Its influence on symptom frequency, fatigue, and functional status for

persons with progressive multiple sclerosis. Archives of Physical Medicine and

Rehabilitation, 79, 141-146.

Dimeo, F., Rumberger, B., & Keul, J. (1998). Aerobic exercise as therapy for cancer fatigue.

Medicine & Science in Sports & Exercise, 30(4), 475-478.

D’Olhaberriague, L., Litvan, I., Mitsias, P., & Mansbach, H. (1996). A reappraisal of reliability and

validity studies in stroke. Stroke: A Journal of Cerebral Circulation, 27(12), 2331-2336.

Duncan, P., Richards, L., Wallace, D., Stoker-Yates, J., Pohl, P., … Studenski, S. (1998). A

randomized, controlled pilot study of a home-based exercise program for individuals

with mild and moderate stroke. Stroke, 29, 2055-2060.

Edinger, J. & Means, M. (2005). Cognitive-behavioral therapy for primary insomnia. Clinical

Psychology Review, 25, 539-558.

92
Ettin, M., Heiman, S., & Kopel, S. (Winter 1988). Group building: Developing protocols for

psychoeducational groups. Group, 12(4), 205-225.

Field, A. (2009). Discovering Statistics Using SPSS (3rd ed.). London: Sage Publications Ltd.

Flinn, N., & Stube, J. (2010). Post-stroke fatigue: Qualitative study of three focus groups.

Occupational Therapy International, 17(2010), 81-91.

Gielissen, M., Verhagen, C., & Bleijenberg, G. (2007). Cognitive behavior therapy for fatigued

cancer survivors: Long-term follow-up. British Journal of Cancer, 97, 612- 618.

Glader, E., Stegmayr, B., & Asplund, K. (2002). Poststroke fatigue: A 2-year follow-up study of

stroke patients in Sweden. Stroke, 33, 1327-1333.

Gordon, N., Gulanick, M., Costa, F., Fletcher, G., Franklin, B., Roth, El, & Shephard, T. (2004).

Physical activity and exercise recommendations for stroke survivors: An AHA scientific

statement from the Council on Clinical cardiology, subcommittee on exercise, cardiac

rehabilitation and prevention; the Council on Cardiovascular Nursing; the Council on

Nutrition, Physical Activity, and Metabolism; and the Stroke Council. Circulation, 109,

2031-2041.

Haas, B. (2000). Focus on health promotion: Self-efficacy in oncology nursing research and

practice. Oncology Nursing Forum, 27(1), 89-97.

Harvey, R. (2010). Central post stroke pain syndrome. Topics in Stroke Rehabilitation, 17(3),

163-172.

Im, K., Strader, S., & Dyken, M. (2010). Management of sleep disorders after stroke. Current

Treatment Options in Neurology, 12, 379-395.

93
Ingles, J., Eskes, G., & Phillips, S. (1999). Fatigue after stroke. Archives of Physical Medicine and

Rehabilitation, 80, 173-178.

Knoop, H., van Kessel, K., & Moss-Morris, R. (2012). Which cognitions and behaviours mediate

the positive effect of cognitive behavioural therapy on fatigue in patients with multiple

sclerosis? Psychological Medicine, 42(1), 205-213.

Kralik, D., Telford, K., Price, K., & Koch, T. (2005). Women’s experiences of fatigue in chronic

illness. Journal of Advanced Nursing, 52(6), 372-380.

Krupp, L., LaRocca, N., Muir-Nash, J., & Steinberg, A. (1989). The fatigue severity scale:

Application to patients with multiple sclerosis and systemic lupus erythematosus.

Archives in Neurology, 46, 1121-1123.

Krupp, L., & Pollina, D. (1996). Mechanisms and management of fatigue in progressive

neurological disorders. Current Opinion in Neurology, 9, 456-460.

Kwekkeboom, K., Abbott-Anderson, K., Cherwin, C., Roiland, R., Serlin, R., & Ward, S. (2012).

Pilot randomized controlled trial of a patient-controlled cognitive-behavioral

intervention for the pain, fatigue, and sleep disturbance symptom cluster of cancer.

Journal of Pain and Symptom Management, 1(2), 1-13.

Lawton, M.P. & Brody, E. (1969). Assessment of older people: Self-maintaining and

instrumental activities of daily living. Gerontologist, 9, 179-186.

Lerdal, A., Bakken, L., Kouwenhoven,S., Pedersen, G., Kirkevold, M., Finset, A., & Kim, H. (2009).

Poststroke fatigue- A review. Journal of Pain and Symptom Management, 38(6), 928-49.

Levine, J., & Greenwald, B. (2009). Fatigue in Parkinson disease, stroke, and traumatic brain

injury. Physical Medicine Rehabilitation Clinics in North America, 20, 347-361.

94
Locke, B., & Putnam, P. (2010). Center for epidemiologic studies depression scale. Retrieved

February 23, 2010 from http://www.friendsnrc.org/download/outcomeresources/

toolkit/annot/cesd.pdf.

Lorig, K., Mazonson, P., & Holman, H. (1993). Evidence suggesting that health education for self

-management in patients with chronic arthritis has sustained health benefits while

reducing health care costs. Arthritis and Rheumatism, 36(4), 439-446.

Lorig, K., Ritter, P., Stewart, A., Sobel, D., Brown, B., Bandura, A., … & Holman, H. (2001).

Chronic disease self-management program: 2-year health status and health care

utilization outcomes. Medical Care, 39(11), 1217-1223.

Lyden, P., Lu, M., Jackson, C., Marler, J., Kothari, R., Brott, T., Zivin, J. (1999). Underlying

structure of the national institutes of health stroke scale: Results of a factor analysis.

Stroke, 30, 2347-2354.

Lynch, J., Mead, G., Grieg, C., Young, A., Lewis, S., & Sharpe, M. (2007). Evaluation of fatigue

scales in stroke patients. Stroke, 38, 2090 – 2095.

Mathiowetz, V., Finlayson, M., Matuska,K., Chen, H., & Luo, P. (2005). Randomized controlled

trial of an energy conservation course for persons with multiple sclerosis. Multiple

Sclerosis, 11, 592-601.

Mathiowetz, V., Matuska, K., Finlayson, M., Luo, P., & Chen, H. (2007). One-year follow-up to a

randomized controlled trial of an energy conservation course for persons with multiple

sclerosis. International Journal of Rehabilitation Research, 30,(4), 305-313.

95
Mathiowetz, V., Matuska, K., & Murphy, M. (2001). Efficacy of an energy conservation course

for persons with multiple sclerosis. Archives of Physical Medicine and Rehabilitation, 82,

449-456.

Matuska, K., Mathiowetz, V., & Finlayson, M. (2007). Use and perceived effectiveness of energy

conservation strategies for managing multiple sclerosis fatigue. The American Journal of

Occupational Therapy, 61, 62-69.

McGeough, E., Pollock, A., Smith, L., Dennis, M., Sharpe, M., Lewis, S., & Mead, G. (2009).

Interventions for post-stroke fatigue (review). Cochrane Database of Systematic

Reviews 2009, Issue 3, DOI: 10.1002/14651858.CD007030.pub2.

Mead, G., Bernhardt, J., & Kwakkel, G. (2012). Editorial: Stroke: Physical fitness, exercise, and

fatigue. Stroke Research and Treatment, 2012,1-2.

Michael, K. (2002). Fatigue and stroke. Rehabilitation Nursing, 27(3), 89-103.

Michael, K., Allen, J., & Macko, R. (2006). Fatigue after stroke: Relationship to mobility, fitness,

ambulatory activity, social support and fall efficacy. Rehabilitation Nursing, 31, 210-217.

Naess, H., Nyland, H., Thomassen, L., Aarseth, J, & Myhr, K. (2005). Fatigue at long-term follow

-up in young adults with cerebral infarction. Cerebrovascular Disease, 20, 245-250.

National Institute of Neurological Disorders and Stroke (NINDS). (2014). Post-stroke

rehabilitation fact sheet. Retrieved from

http://www.ninds.nih.gov/disorders/stroke/poststrokerehab.htm

NINDS. (2009). Brain basics: Understanding sleep fact sheet. Retrieved October 16, 2009 from

http://www.ninds.nih.gov/disorders/brain_basics/understanding_sleep.htm?css.print

96
Packer, T., Brink, N., & Sauriol, A. (1995). Managing fatigue: A six-week course for energy

conservation. Tucson, AZ: Therapy Skill Builders.

Park, J., Chun, M., Kang, S., Lee, J., Kim, B., & Sin, M. (2009). Functional outcome in poststroke

patients with or without fatigue. American Journal of Physical Medicine and

Rehabilitation, 88(7), 554-558.

Physical Activities Guidelines Advisory Committee. (2008). Part A: Executive summary. Physical

Activities Guidelines Advisory Committee Report 2008. Washington, D.C., US Department

of Health and Human Services. Retrieved from http://www.health.gov/paguidelines/

report/pdf/CommitteeReport.pdf.

Pollack, A., St. George, B., Fenton, M., & Firkins, L. (2014). Top 10 research priorities relating to

life after stroke- Consensus from stroke survivors, caregivers, and health professionals.

International Journal of Stroke, 9,313-320.

Polit, D. & Beck, C. (2008). Nursing research: Generating and assessing evidence for nursing

practice. Philadelphia: Lippincott Williams & Wilkins.

Portenoy, R., & Itri, L. (1999). Cancer-related fatigue: Guidelines for evaluation and

management. The Oncologist, 4, 1-10.

Price, J.R., Mitchell, E., Tidy, E., & Hunot, V. (2009). Cognitive behavioral therapy for chronic

fatigue syndrome: A review. Cochrane Databases of Systematic Reviews, Issue 3,

DOI: 10.1002/14651858.CD001027.pub2

Prins, J., Bleijenberg, G., Bazelmans, E., Elving, L., de Boo, T., Severens, J., … & van der Meer, J.

(2001). Cognitive behavior therapy for chronic fatigue syndrome: A multicentre

randomized controlled trial. The Lancet, 357, 841-847.

97
Radloff, L. (1977). The CES-D scale: A self-report depression scale for research in the general

population. Applied Psychological Measurement, 1, p. 385-401.

Robison, J., Wiles, R., Ellis-Hill, C., McPherson, K., Hyndman, D., & Ashburn, A. (2009). Resuming

previously valued activities post-stroke: Who or what helps? Disability Rehabilitation,

31(19), 1555 – 1566.

Roding, J., Lindstrom, B., Malms, J., & Ohman, A. (2003). Frustrated and invisible- Younger

patients’ experiences of the rehabilitation process. Disability and Rehabilitation, 25(15),

867-874.

Schepers, V., Visser-Meily, A., Ketelaar, M., & Lindeman, E. (2006). Poststroke fatigue: Course

and its relation to personal and stroke-related factors. Archives of Physical and Medicine

Rehabilitation, 87, 184-188.

Scheurs, K.M.G., Veehof, M.M., Passade, L., & Vollenbroek-Hutten, M.M.R. (2011). Cognitive

behavioural treatment for chronic fatigue syndrome in a rehabilitation setting:

Effectiveness and predictors of outcome. Behaviour Research and Therapy, 49, 908-913.

Schultz, S. (2009). Theory of occupational adaptation. In E. Crepeau, E. Cohn, & B. Boyt-Schell

(Eds.), Willard & Spackman’s Occupational Therapy (11th ed.)(pp. 462-475. Baltimore:

Lippencott, Williams & Wilkins.

Schwartz, D. & Carney, C. (2012). Mediators of cognitive-behavioral therapy for insomnia: A

review of randomized controlled trials and secondary analysis studies. Clinical

Psychology Review, 32, 664-675.

Schwartzberg, S., Howe, M., & Barnes, M.A. (2008). Groups- Applying the functional group

model. Philadelphia: F. A. Davis Company.

98
Shadish, W., Cook, T. & Campbell, D. (2002). Experimental and quasi-experimental designs for

generalized causal inference. Boston: Houghton Mifflin Company.

Shah, A. (2009). Fatigue in multiple sclerosis. Physical Medicine and Rehabilitation Clinics of

North America, 20, 363-372.

Sharpe, M., Hawton, K., Simkin, S., Surawy, C., Hackmann, A., Klimes, I., … & Seagroatt, V.

(1996). Cognitive behavioral therapy for the chronic fatigue syndrome: A randomized

controlled trial. British Medical Journal, 312, 22-26.

Shevil, E. (2008). Developing and pilot testing a cognitive intervention program for persons with

multiple sclerosis. Dissertation, University of Illinois at Chicago, 136.

Sterr, A., Herron, K., Dijk, D., & Ellis, J. (2008). Time to wake-up: Sleep problems and daytime

sleepiness in long-term stroke survivors. Brain Injury, 22(7-8), 575-579.

Steultjens, E., Dekker, J., Bouter, L., Leemrijse, C.& van der Ende, C. (2005). Evidence of the

efficiency of occupational therapy in different conditions: An overview of systematic

reviews. Clinical Rehabilitation, 19, 247-254.

Stokes, E., O’Connell, C., & Murphy, B. (2011). An investigation into fatigue post stroke.

Advances in Physiotherapy, 13, 2-10.

Stone, S. (2005). Reactions to invisible disability: The experiences of young women survivors of

hemorrhagic stroke. Disability and Rehabilitation, 27(6), 293-304.

Thomas, S., Thomas, P., Nock, A., Slingsby, V., Galvin, K., Baker, R., … & Hillier, C. (2010).

Development and preliminary evaluation of a cognitive behavioural approach to fatigue

management in people with multiple sclerosis. Patient Education and Counseling, 78,

240-249.

99
Vanage, S., Gilbertson, K., & Mathiowetz, V. (2003). Effects of an energy conservation course on

fatigue impact for persons with progressive multiple sclerosis. The American Journal of

Occupational Therapy, 57(3), 315-323.

van de Port, I., Kwakkel, G., Schepers, V., Heinemans, C., & Lindeman, E. (2007). Is fatigue an

independent factor associated with activities of daily living, instrumental activities of

daily living and health-related quality of life in chronic stroke. Cerebrovascular Diseases,

23, 40-45.

van Eijsden, H., van de Port, I., Visser-Meily, J., & Kwakkel, G. (2012). Post stroke fatigue: Who

is at risk for an increase in fatigue. Stroke Research and Treatment [electronic], 2012,

Article ID 863978, 8 pages.

Whiting, P., Bagnell, A., Sowden, A., Cornell, J., Mulrow, C., & Ramirez, G. (2001). Interventions

for the treatment and management of chronic fatigue syndrome: A systematic review.

JAMA, 286(11), 1360-1368.

Winningham, M. (2001). Strategies for managing cancer-related fatigue syndrome. Cancer

Supplement, 92(4). 988-997.

Wolf, T., Baum, C., & Connor, L. (2009). Changing face of stroke: Implications for occupational

therapy practice. American Journal of Occupational Therapy, 63(5), 621-625.

World Health Organization (WHO). (2001). International classification of function, disability and

health (ICF). Geneva, Switzerland. WHO Press.

Zedlitz, A.M.E.E., Fassoti, L., & Geurts, A.C.H. (2011). Post-stroke fatigue: A treatment protocol

that is being evaluated. Clinical Rehabilitation, 25(6), 487-500.

100
 Appendix A

IRB Approval
Proposed Informed consent

101
102
 RESEARCH SUBJECT INFORMATION AND CONSENT FORM

TITLE: Relieving Post-Stroke Fatigue Using a Group-Based Educational Training Approach

VCU IRB NO.:HM20000082

If any information contained in this consent form is not clear, please ask the study staff to explain any
information that you do not fully understand. You may take home an unsigned copy of this consent form
to think about or discuss with family or friends before making your decision.

PURPOSE OF THE STUDY

The purpose of this research study is to find out if participation in a group-based educational program led
by an occupational therapist results in decreased fatigue and improved functional performance for people
who have had a stroke.

You are being asked to participate in this study because you have had a stroke which has caused you to
experience fatigue and interferes with your ability to participate in daily activities.

DESCRIPTION OF THE STUDY AND YOUR INVOLVEMENT

Upon approval of the Institutional Review Board at Virginia Commonwealth University and if you decide
to be in this research study, you will be asked to sign this consent form after you have had all your
questions answered and understand what will happen to you.

In this study, you will be asked to provide your contact information (telephone number and/or email
address) so that you can be contacted so schedule a meeting for completion of the tools being used in
assessment and to send reminders about the group meeting dates. You will be asked to complete several
assessments to determine your baseline level of fatigue, functional performance, depression, physical
limitations after your stroke, and the quality of your sleep. After a seven-week period, you will be asked
to complete the assessments of fatigue and functional performance; these will tell us whether there was
any natural improvement in your level of fatigue or functional performance. You will also be asked to
begin the educational program by attending seven weekly group sessions. Each session will last
approximately one hour. In each session, you will be in a group with other stroke survivors. In each
session, you will be provided with information about fatigue, given a chance to practice methods to help
reduce the impact on daily activities, and given homework to apply these methods at home. At the start of
each session (after the first one), you will be asked to share your experience at home to help or get help
from other group members on ways to make the methods successful at home. You will be asked to keep a
journal about your experiences in order to share this information with the group. In the first session, you
will learn about the impact of fatigue and develop strategies to talk about it with other people. In the
second session, you will learn about scheduling activities throughout your day and methods to reduce
stress and anxiety. In the third session, you will learn methods to improve your sleep experience. In the
fourth session, you will learn how to modify activities to use less energy but allow you to remain as active
as possible. In the fifth session, you will learn to rate the importance of activities and to plan ahead to
reduce the impact of fatigue. In the sixth session, you will learn the concepts of balancing rest and activity

103
and complete a weekly schedule. In the seventh session (the last one), you will be asked to set goals and
complete the assessments of fatigue and functional performance to show whether the group-based
program reduced your fatigue and/or improved your functional performance of daily activities. You will
also be asked to complete an Intervention Satisfaction survey about your experience in the group-based
program. This is to help evaluate the content of the sessions. Seven weeks after the program is over, you
will be contacted to complete the assessments of fatigue and functional performance. This is to see if the
methods taught to relieve fatigue resulted in long-term improvements.

Significant new findings developed during the course of the research which may relate to your
willingness to continue participation will be provided to you.

RISKS AND DISCOMFORTS

Information will be collected from you specifically for research purposes. All research information will
be maintained and secured in locked file cabinets or password protected flash drive. It will not be possible
to identify you from the reports or publications that may result from this study as it will be summary
information about the group. Your name, address, telephone number, email address will be maintained in
a separate file and only used for reminders for the assessments and group program dates. You may
withdraw from this study at any time.

BENEFITS TO YOU AND OTHERS

You may not directly benefit from this study. However, you will be able to keep the materials presented
during the educational sessions. And the information we learn from people in this study may help us
design better programs for people who have fatigue after a stroke.

COSTS

There are no costs for participating in this study other than the time you will spend in the groups and
filling out assessments.
PAYMENT FOR PARTICIPATION

Every volunteer will also be entered in a drawing to receive one of two $25 gift cards. The winner will be
notified at the completion of the study.

ALTERNATIVES

The only alternative to participation is if you choose not to participate.

CONFIDENTIALITY
Potentially identifiable information about you will consist of information you provide about yourself on
the demographic survey and the assessments. Data is being collected only for research purposes. There
will be a chart with your name, contact information and a consecutive identification number. Only the
Research Assistant will have access to this file. This will be stored separately from the program
attendance information and will be kept in password protected thumb drive and will be deleted when the
research study ends.

104
We will not tell anyone the answers you give us; however, information from the study and the consent
form signed by you may be looked at or copied for research or legal purposes or by Virginia
Commonwealth University. Personal information about you might be shared with or copied by
authorized officials of the Department of Health and Human Services (if applicable).

What we find from this study may be presented at meetings or published in papers, but your name will
not ever be used in these presentations or papers.

We will not tell anyone the answers you give us. But, if you tell us that someone is hurting you, or that
you might hurt yourself or someone else, the law says that we have to let people in authority know so they
can protect you. Depending on the circumstances, the report may need to be made to the police or adult
protective services.

VOLUNTARY PARTICIPATION AND WITHDRAWAL

You do not have to participate in this study. If you choose to participate, you may stop at any time
without any penalty. You may also choose not to answer particular questions that are asked in the study.
Your decision to withdraw will involve no penalty and you will still be eligible in the $25 gift card
drawing

Your participation in this study may be stopped at any time by the study staff] without your consent. The
reasons might include:

 the study staff thinks it necessary for your health or safety;

 you have not followed study instructions;
 the sponsor has stopped the study; or
 administrative reasons require your withdrawal.

QUESTIONS
If you have any questions, complaints, or concerns about your participation in this
research, contact:

Catherine Emery, MS, OTR/L; Doctoral student and Student Investigator

Telephone: 717-203-2553 email: [email protected]
and/or
Tony Gentry, PhD, OTR\L, Dissertation Chair; Primary Investigator
Telephone: 804-828-3397 email: [email protected]

If you have any general questions about your rights as a participant in this or any
other research, you may contact:
Office of Research
Virginia Commonwealth University

105
 800 East Leigh Street, Suite 3000
P.O. Box 980568
Richmond, VA 23298
Telephone: (804) 827-2157

Contact this number for general questions, concerns or complaints about research. You may also call this
number if you cannot reach the research team or if you wish to talk with someone else. General
information about participation in research studies can also be found at
http://www.research.vcu.edu/irb/volunteers.htm.

CONSENT
I have been given the chance to read this consent form. I understand the information about this study.
Questions that I wanted to ask about the study have been answered. My signature says that I am willing
to participate in this study. I will receive a copy of the consent form once I have agreed to participate.

Participant name printed Participant signature Date

________________________________________________

Name of Person Conducting Informed Consent

Discussion / Witness 3

(Printed)

________________________________________________ ________________

Signature of Person Conducting Informed Consent Date

Discussion / Witness

________________________________________________ ________________

Principal Investigator Signature (if different from above) Date 4

106
 Appendix B

Fatigue Severity Scale (FSS)

107
 Fatigue Severity Scale (FSS- English version*)
strongly strongly
agree agree
---------------
1. My motivation is lower when I am fatigued. 1 2 3 4 5 6 7
2. Exercise brings on my fatigue. 1 2 3 4 5 6 7
3. I am easily fatigued. 1 2 3 4 5 6 7
4. Fatigue interferes with my physical functioning. 1 2 3 4 5 6 7
5. Fatigue causes frequent problems for me. 1 2 3 4 5 6 7
6. My fatigue prevents sustained physical function. 1 2 3 4 5 6 7
7. Fatigue interferes with carrying out certain duties
and responsibilities. 1 2 3 4 5 6 7
8. Fatigue is among my three most disabling symptoms. 1 2 3 4 5 6 7
9. Fatigue interferes with my work, family, or social life. 1 2 3 4 5 6 7

*Patients are instructed to choose a number from 1 to 7 that indicates their degree
of agreement with each statement where 1 indicates strongly disagree and 7, strongly
agree. [Krupp et al. Arch Neurol 1989]

108
 Appendix C

Physical Self-Maintenance Scale- Instrumental Activities of Daily Living

109
PHYSICAL SELF-MAINTENANCE SCALE (ACTIVITIES OF DAILY LIVING, OR ADLS)
In each category, circle the item that most closely describes the person’s highest level of functioning and record
the score assigned to that level (either 1 or 0) in the blank at the beginning of the category.

A. Toilet
1. Care for self at toilet completely; no incontinence 1
2. Needs to be reminded, or needs help in cleaning self, or has rare (weekly at most) accidents 0
3. Soiling or wetting while asleep more than once a week 0
4. Soiling or wetting while awake more than once a week 0
5. No control of bowels or bladder 0
B. Feeding __
1. Eats without assistance 1
Eats with minor assistance at meal times and/or with special preparation of food, or help in cleaning up
2. 0
after meals
3. Feed self with moderate assistance and is untidy 0
4. Requires extensive assistance for all meals 0
5. Does not feed self at all and resists efforts of others to feed him or her 0
C. Dressing __
1. Dresses, undresses, and selects clothes from own wardrobe 1
2. Dresses and undresses self, with minor assistance 0
3. Needs moderate assistance in dressing and selection of clothes 0
4. Needs major assistance in dressing, but cooperates with efforts of others to help 0
5. Completely unable to dress self and resists efforts of others to help 0
D. Grooming (neatness, hair, nails, hands, face, clothing) __
1. Always neatly dressed, well-groomed, without assistance 1
2. Grooms self adequately with occasional minor assistance, ex, with shaving 0
3. Needs moderate and regular assistance or supervision with grooming 0
4. Needs total grooming care, but can remain well-groomed after help with others 0
5. Actively negates all efforts of others to maintain grooming 0
E. Physical Ambulation __
1. Goes about grounds or city 1
2. Ambulates within residence on or about one block distance 0
3. Ambulates with assistance of (check one below) 0
A ( ) another person, b ( ) railing, c ( ) cane, d ( ) walker, e ( ) wheelchair
4. Sits unsupported in chair or wheelchair, but cannot propel self without help 0
1. __ Gets in and out without help. 2. __ Needs help getting in and out.
5. Bedridden more than half the time 0
F. Bathing __
1. Bathes self (tub, shower, sponge bath) without help 1
2. Bathes self with help getting in and out of tub 0
3. Washes face and hands only, but cannot bathe rest of body 0
4. Does not wash self, but is cooperative with those who bathe him or her 0
5. Does not try to wash self and resists efforts to keep him or her clean 0
For scoring interpretation and source, see note following the next instrument

110
 INSTRUMENTAL ACTIVITIES OF DAILY LIVING SCALE (IADLs)
In each category, circle the item that most closely describes the person’s highest level of functioning and record
the score assigned to that level (either 1 or 0) in the blank at the beginning of the category.
A. Ability to use telephone __
1. Operates telephone on own initiative; looks up and dials numbers 1
2. Dials a few well-known numbers 1
3. Answers telephone, but does not call 1
4. Does not use telephone at all 0
B. Shopping __
1. Takes care of all shopping needs independently 1
2. Shops independently for small purchases 0
3. Needs to be accompanied on any shopping trip 0
4. Completely unable to shop 0
C. Food Preparation __
1. Plans, prepares, and serves adequate meals independently 1
2. Prepares adequate meals if supplied with ingredients 0
3. Heat and serves prepared meals or prepares meals, but does not maintain adequate diet 0
4. Needs to have meals prepared and served 0
D. Housekeeping __
1. Maintains house alone or with occasional assistance (ex, domestic help for heavy work) 1
2. Performs light daily tasks such as dishwashing, bedmaking 1
3. Performs light daily tasks, but cannot maintain acceptable level of cleanliness 1
4. Needs help with all home maintenance tasks 1
5. Does not participate in any housekeeping tasks 0
E. Laundry __
1. Does personal laundry completely 1
2. Launders small items; rinses socks, stockings, etc. 1
3. All laundry must be done by others 0
F. Mode of Transportation __
1. Travels independently on public transportation or drives own car 1
2. Arranges own travel via taxi, but does not otherwise use public transportation 1
3. Travels on public transportation when assisted or accompanied by another 1
4. Travel limited to taxi or automobile with assistance of another 0
5. Does not travel at all 0
G. Responsibility for Own Medications __
1. Is responsible for taking medication in correct dosages at correct time 1
2. Takes responsibility if medication is prepared in advance in separate dosages 0
3. Is not capable of dispensing own medication 0
H. Ability to Handle Finances __
Manages financial matters independently (budgets, writes checks, pays rent and bills, goes to bank);
1. 1
collects and keeps track of income
2. Manages day-to-day purchases, but needs help with banking, major purchases, etc. 1
3. Incapable of handling money 0

111
Scoring Interpretation: For ADLs, the total score ranges from 0-6, and for IADLs, from 0-8. In some categories, only
the highest level of function receives a 1; in others two or more levels have scores of 1 because each describes
competence that represents some minimal level of function. These screens are useful for indicating specifically
how a person is performing at the present time. When they are also used over time, they serve as documentation
of a person’s functional improvement or deterioration.

Source: Lawton, M. P. & Brody, E. M. (1969). Assessment of older people: Self-maintaining and
instrumental activities of daily living. Gerontologist, 9, 179-186.

112
 Appendix D

Center for Epidemiologic studies Depression Scale (CES-D)

113
 Center for Epidemiologic Studies Depression Scale (CES-D)
Directions: Do not score if missing more than 4 responses. 1) For each item, look up your response and
corresponding score (0-3). 2) Fill in the score for each item under the last column labeled “Score”. 3) Calculate your
Total Score by adding up all 20 scores.

Rarely or Some or a Occasionally or a All of

none of the little of the moderate amount the
time (less time (1-2 of time time (5-
than 1 day) days) (3-4 days) 7 days)
During the past week… Score
1. I was bothered by things 0 1 2 3
that usually don’t bother me.
2. I did not feel like eating; 0 1 2 3
my appetite was poor.
3. I felt that I could not shake 0 1 2 3
off the blues even with help
from my family.
4. I felt that I was just as 3 2 1 0
good as other people.
5. I had trouble keeping my 0 1 2 3
mind on what I was doing.
6. I felt depressed. 0 1 2 3
7. I felt that everything I did 0 1 2 3
was an effort.
8. I felt hopeful about the 3 2 1 0
future.
9. I thought my life had been 0 1 2 3
a failure.
10. I felt fearful. 0 1 2 3
11. My sleep was restless. 0 1 2 3
12. I was happy. 3 2 1 0
13. I talked less than usual. 0 1 2 3
14. I felt lonely. 0 1 2 3
15. People were unfriendly. 0 1 2 3
16. I enjoyed life. 3 2 1 0
17. I had crying spells. 0 1 2 3
18. I felt sad. 0 1 2 3
19. I felt that people disliked 0 1 2 3
me.
20. I could not “get going”. 0 1 2 3
Total Score:

Scoring Results: Total Score of 16 or higher is considered depressed.

114
 Appendix E

National Institutes of Health Stroke Scale (NIH-SS)

115
116
117
118
119
120
121
122
123
 Appendix F

Pittsburgh Sleep Quality Index (PSQI)

124
125
126
127
128
 Appendix G

Demographic Questionnaire

129
 Demographic Questionnaire

Name: Phone:

Sex: M F Age/DOB:

Diagnosis: Months since stroke:

Other medical conditions, if any:

Current medications:

Presence of a friend or family member as caregiver: Y N

For what activities do you receive assistance?

How often is this assistance provided?

130
 Appendix H

Intervention Satisfaction Survey

131
 Intervention Satisfaction Survey

1. How many program sessions did you attend?

2. After participating in this educational program, how confident are you that you can :

A. Understand and Not at all --------------------------------------------------- Totally

communicate your needs
to others related to PSF? confident 1 – 2 – 3 – 4 – 5 – 6 – 7 – 8 – 9 – 10 confident

B. Pace your activities and Not at all --------------------------------------------------- Totally

use relaxation
techniques? confident 1 – 2 – 3 – 4 – 5 – 6 – 7 – 8 – 9 – 10 confident

C. Manage sleep Not at all --------------------------------------------------- Totally

problems?
confident 1 – 2 – 3 – 4 – 5 – 6 – 7 – 8 – 9 – 10 confident

D. Incorporate activity Not at all --------------------------------------------------- Totally

through your schedule?
confident 1 – 2 – 3 – 4 – 5 – 6 – 7 – 8 – 9 – 10 confident

E. Prioritize and plan your Not at all --------------------------------------------------- Totally

daily routine?
confident 1 – 2 – 3 – 4 – 5 – 6 – 7 – 8 – 9 – 10 confident

F. Schedule activities and Not at all --------------------------------------------------- Totally

include rest periods?
confident 1 – 2 – 3 – 4 – 5 – 6 – 7 – 8 – 9 – 10 confident

G. Apply the strategies Not at all --------------------------------------------------- Totally

learned to future
activities? confident 1 – 2 – 3 – 4 – 5 – 6 – 7 – 8 – 9 – 10 confident

H. Keep the fatigue you Not at all --------------------------------------------------- Totally

feel from interfering with
the activities you do? confident 1 – 2 – 3 – 4 – 5 – 6 – 7 – 8 – 9 – 10 confident

3. What additional information would you like to have had covered during the program?

132
 Appendix I

Recruitment flyer

133
 Did you have a stroke at least one year ago?

Did you fatigue (a lack of energy or sense of exhaustion) cause you to

reduce or change your daily activities?

Are you interested in learning ways to reduce the effects of fatigue?

Would you be willing to join a group to help other stroke survivors

avoid the effects of fatigue also?

Be a part of a research study to examine the effectiveness of a group-

based program to reduce fatigue and the effects it has on daily
function. You will benefit by learning strategies from others in your
situation. You will help other stroke survivors by sharing your
experiences. And you will be helping me complete my dissertation
research.

Please consider joining our group to help stroke survivors Live Life to Its
Fullest©

To learn more:
Catherine Emery, ABD, OTR/L 717-203-2553
[email protected]

Kayla Riegel, OTD, OTR/L

570-573-2586 [email protected]

134
 Vita

Catherine Elizabeth Emery (nee Emenheiser) was born on November 29, 1961, in York County,
Pennsylvania. She graduated from Red Lion Area Senior High School, Red Lion, Pennsylvania in
1979. She received her Bachelor of Science in PsychoBiology from Albright College in 1983 and
provided cognitive retraining therapy to traumatically brain injured adults at Reading
Rehabilitation Hospital until 1986. Catherine received a Masters of Science in Occupational
Therapy from Boston University in January 1989, where she completed a specialization in
traumatic brain injury rehabilitation. Upon returning to Pennsylvania, she worked in
Mechanicburg before returning to the neurotrauma unit of Reading Rehabilitation Hospital.
She taught for Penn State- Berks Campus 1993-4. She served on the Pennsylvania Occupational
Therapy Association Board of Directors from 1993- 1996 and received the President’s Service
Award in 1995. That same year, she began work in long-term care facilities in the Lancaster and
Berks County areas of Pennsylvania through 1999. She achieved Specialty Certification in
Neurorehabilitation through the American Occupational Therapy Association 1998-2006.
Catherine joined the full-time teaching faculty at Alvernia University in 1999, where she
continues to teach in the Occupational Therapy Department, currently serving as MSOT
Program Coordinator. She also continues to work in home health care as a per diem
occupational therapist in Pennsylvania.

135