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Impact of Post-Stroke Mobility on Activity and Participation

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Title:
Impact of Post-Stroke Mobility on Activity and Participation
Creator:
SCHMID, ARLENE ANN ( Author, Primary )
Copyright Date:
2008

Subjects

Subjects / Keywords:
Ambulation ( jstor )
Caregivers ( jstor )
Disabilities ( jstor )
Gait ( jstor )
Older adults ( jstor )
Predisposing factors ( jstor )
Speed ( jstor )
Strokes ( jstor )
Velocity ( jstor )
Walking ( jstor )

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Source Institution:
University of Florida
Holding Location:
University of Florida
Rights Management:
Copyright Arlene Ann Schmid. Permission granted to University of Florida to digitize and display this item for non-profit research and educational purposes. Any reuse of this item in excess of fair use or other copyright exemptions requires permission of the copyright holder.
Embargo Date:
7/30/2007
Resource Identifier:
759871806 ( OCLC )

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Full Text












IMPACT OF POST-STROKE MOBILITY ON ACTIVITY AND PARTICIPATION


By

ARLENE ANN SCHMID


















A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL
OF THE UNIVERSITY OF FLORIDA IN PARTIAL FULFILLMENT
OF THE REQUIREMENTS FOR THE DEGREE OF
DOCTOR OF PHILOSOPHY

UNIVERSITY OF FLORIDA
2005

































Copyright 2005

by

Arlene Ann Schmid

































This dissertation is dedicated in the memory of my father, Albert R. Schmid.















ACKNOWLEDGMENTS

Many people have gotten me to this phase of my life. I thank my parents and sister

for unending support and love, for always telling me that I could be successful. I thank

my mother for teaching me that I could always be more, and do more.

I thank Dr. Pamela Duncan for reminding me that I could always be more and do

more everyday. I would never be here without her support and dedication to my future.

I also thank Dr. Maude Rittman for continuous encouragement and assistance, and

wonderful everyday conversation that got me through this process. The rest of my

committee, Dr. Lorie Richards and Michael Marsiske, have provided wonderful guidance

for many of the years that I have been pursuing my graduate degree, but have been

outstanding as a dissertation committee.

Friendship has been a wonderful requirement of graduate school, I think we would

not survive without each other. I am honored to have known so many extraordinary

people who will do so many great things. I am especially grateful for the friendship of

Jessica, Roxanna, Rick, Ellen, Diane, Cesar, Jordan (thanks for the dog sitting too!!) and

my neighbors, Nate and Gretchen. Michelle deserves her own sentence. She has been a

great support, and always seemed to know what to do, plus those car rides to Buffalo

created some type of weird bond (and I knew she would complain if she did not have

your own line!!!). Megan (Meggy !!) has been an outstanding friend, and has provided

great information regarding the Midwest!! And Marieke! My IL! She is the "strangest









person I ever met". She is a great friend and has been so good to me. I thank her for being

fabulous! Thank you all for everything, I am glad we have crossed paths...

The 'boys', the 'PhDemons', how will I ever get through this new phase of my life

without them? From day one we have depended on each other, and have grown to

become something we never knew was possible. Michael and Dennis have provided

wonderful friendship and have made this time of life so much better. Thanks to the two of

them, I have many more happy memories and have had much more fun (as measured by

the fun-o'meter) than most on their way out of graduate school. But more importantly,

they have both provided guidance, and I hope I have also assisted them along this long

long road.

And finally to 'BZ', we have made it through this. I now have no question that we

can do anything, as long as we do it together. He is the sweetest and most wonderful

person and I am very lucky to be spending the rest of my life with him, Kalo, and Maile. I

thank him for always reminding me that I was capable of taking on the world.
















TABLE OF CONTENTS

page

A C K N O W L E D G M E N T S ................................................................................................. iv

LIST OF TABLES ................................ ......... .. .. .. .......... ....... ix

LIST OF FIGURES ......... ......................... ...... ........ ............ xi

ABSTRACT ........ .............. ............. .. ...... .......... .......... xii

CHAPTER

1 IN TR OD U CTION ............................................... .. ......................... ..

Theoretical M models ............................................... ...... ........................ ........ .3
The World Health Organization Model: International Classification of
Functioning, Disability, and Health .............. ............................................ 3
Theoretical Fram ew ork ............................................................................. 6
R research Q uestions........... .................................................................... ........ .... 7

2 REVIEW OF THE LITERATURE ........................................ ......................... 9

Introduction ................................................................. ...............
Mobility in the Community Dwelling Elderly...........................................................10
G ait V velocity ................................................................. .. ......................... 11
Gait velocity as an outcome measure.................................... ..................11
Gait velocity and other aspects of mobility...............................................12
F a lls ........................................ ...... .......... ............ ................ 1 2
Incidence and consequences of falls in the community dwelling elderly ....12
M ultifactorial risk factors................................... .............................. ...... 13
N um ber of risk factors...................... .................... ......... .......... ............... 14
Fear of falling as a risk factor and consequence of falls ............................15
F ear of F allin g ......................................... ....... ..... .. ........ ............... 15
Incidence of fear of falling in the community dwelling elderly.................. 16
Fear of falling risk factors ...........................................................17
M ability in the Post-Stroke Population ........................................... .....................18
Stroke and Mobility Impairment .................. ..................... ...............18
Stroke .................. ...... .. ......... ...... ..................... ....... 18
G ait V elocity A after Stroke........................................................ ............... 19
Falls A after Stroke ........................................ .. .. .... ........ ..... .... 22









Stroke as a risk factor for falls .......................................... ............... 23
P ost-stroke hip fractures...................................... ........................... ........ 24
Fear of Falling A after Stroke ........................................ .......................... 24
Post-stroke balance confidence ...................................................... 24
Post-stroke fear of falling assessments.................................................25
Post-stroke fear of falling ............................. ........... .................. 26
A activity and P participation ................................................................ ............... ...26
Restriction of Activity and Participation............... ...... ......................... 26
Gait Speed, Activity, and Participation .................................... ............... 27
Falls, Activity, and Participation ................................ ...............29
Fear of Falling, Activity, and Participation.......................... ............... 30
C areg iv ers ...................... .. .. ......... .. .. .................................................3 1
Stroke and Caregiving ................... ...... ........ .. .. .... ..... .. ........ .... 31
Mobility Disability and Caregiving.................... ............. ..............32
C aregiver D expression ............................................. ................ ............. 33
Caregiver Burden ....................... ....... ............................... .33
Sum m ary of the Literature Review .............. ................................... ................34

3 THE IMPACT OF POST-STROKE GAIT VELOCITY CHANGES ON
ACTIVITY AND PARTICIATION .................................................. .................. 35

Introdu action ...................................... ................................................. 3 5
M eth o d s ...................................................................3 7
D design ...................................................................................................... ....... 37
P articip an ts ................................................................ 3 8
O utcom e M measures .................................. ............. ...... ......... 39
G ait v elo city ................................................. ................ 3 9
Activity and participation..................... ...... ........................... 40
Statistical A analysis .......................................... .. .. .... .... ..... ..... .. 4 1
R e su lts ...........................................................................................4 1
D isc u ssio n ............................................................................................................. 4 4

4 FEAR OF FALLING AFTER STROKE ..................................................48

In tro du ctio n ...................................... ................................................ 4 8
M eth o d s ..................................................................5 0
D e sig n .......................................................................................5 0
Sam ple .............................................................................................................50
D ata Collection ................................................................ .. ... ............ 51
O utcom e M measures ...........................................................53
Functional status................................................... 54
Cognitive status ................................................................ .. .............54
D expression ............................... ........ .......................................... 54
Caregiver demographics, burden, and coping ...........................................55
A analysis of Q uantitative D ata ....................................................... 55
R e su lts ...............................................................................................5 6
D description of Sam ple ................................................................................... 56









Relationships Between Fear of falling, Functional Status, and Depression........56
The Experience of Fear of Falling Post-Stroke ....................................... 60
Onset of falling with the stroke event ............. ........................................61
Experiencing the changed body ....................................... ............... 62
A pervasive fear of the unpredictable .......................................................64
Falls as an everyday life experience.................................. ............... 66
Strategies for managing fear of falling ............. .......................................66
D iscu ssion ............................................................................................................ 7 0
Characterization of Fear of Falling.................................. ........................ 71
L im itatio n s ..................................................................................................... 7 4
Future R research ................................................... .. .......... .............. .. 74

5 C O N C L U SIO N ......... ......................................................................... ........ .. ..... .. 77

APPENDIX

EVIDENCE BASED TABLE FOR FEAR OF FALLING AND ACTIVITY
R E ST R IC T IO N ................... .................... ................................... .......... .. .... 1

L IST O F R E FE R E N C E S ....................................................................... ... ...................85

BIOGRAPHICAL SKETCH ............................................................. ............... 105
















LIST OF TABLES


Table pge

2-1. M ultifactorial risk factors for falls ........................................ ....................... 14

2-2. Six am bulation categories ............................................... ............................. 20

2-3. G ait Speed C lassification .............................................................. .....................20

2-4 C om m unity am bulation ......................................... .............................................22

3-1. Community ambulation and gait speed...........................................................36

3-2. Baseline characteristics for participation with initial gait speed < 0.8 m/s
(success = advancing to a higher ambulation classification) .................................42

3-3. Proportions of success/fail for transitioning to next ambulation classification
between baseline and 3 m months ........ ............................................. ............... 43

3-4. Three month outcomes for entire sample...... ....................... ...........43

3-5. Three month outcomes stratified by gait speed.............. ..... .................44

4-1. Coding structure for qualitative interviews ............... .............. .....................53

4-2. Baseline data for those with and without fear of falling (FoF) ..............................56

4-3. Baseline/discharge data for those discussing fear of falling at one and six months 57

4-4. Baseline/discharge data and outcome measures for those with and without fear
of falling ......... ..... ............. ..................................... ............................58

4-5. Scoring of FAI and FIM items for those with and without fear of falling ..............59

4-6. Frequency counts of fear of falling at one and six months .................................59

4-7. Proportions of those with and without fear of falling and chi square ...................59

4-8. Comparison of caregivers for participants with and without fear of falling ............60









4-9. Content analysis frequencies (derived from 55 qualitative interviews) .................61

A-1. Fear of falling and activity restriction .................................... ......... ............... 82
















LIST OF FIGURES

Figurege

1-1. The ICIDH-2 M odel of Disablement ........ .............................. .. ............... 4

1-2. Conceptual M odel ...................... .... ............................................. ....















Abstract of Dissertation Presented to the Graduate School
of the University of Florida in Partial Fulfillment of the
Requirements for the Degree of Doctor of Philosophy

IMPACT OF POST-STROKE MOBILITY ON ACTIVITY AND
PARTICIPATION


By

Arlene Ann Schmid

August 2005

Chair: Pamela W. Duncan
Major Department: Rehabilitation Science

Post-stroke individuals often experience residual mobility impairments, reflected in

decreased gait speed, increased falls, and the possible development of fear of falling. This

research utilized two secondary analyses to explore the impact of post-stroke gait velocity

and fear of falling on activity and participation.

The first study examined clinically meaningful changes in gait velocity in 64 post-

stroke individuals. Velocity was measured at baseline and three months and was placed

into a three tier ambulation classification. T-tests determined a difference in functional

ability (activities of daily living (ADLs), instrumental activities of daily living (IADLs),

mobility, and social participation) between those who did and did not successfully

advance to the next ambulation classification. After stratifying by baseline gait velocity

and controlling for age, those most severely impaired at baseline, and who advanced

classifications, demonstrated significant differences in all measured functional abilities.

In comparison, those moderately impaired only demonstrated significant differences in









social participation. Thus, clinically meaningful changes in gait speed were related to

highly significant changes in all domains, particularly for participation.

The secondary objective was to characterize post-stroke fear of falling. Review of

qualitative interviews identified those with fear of falling. T-tests compared ADLs,

IADLs, and depression measures between those with and without fear. No significant

differences were found for the outcome measures; however, those with detected fear

exhibited slightly worse scores on all measures. Content analysis of the interviews

revealed five elements used to characterize post-stroke fear of falling: (1) onset of falling

with stroke event, (2) experiencing the changed body, (3) a pervasive fear of the

unpredictable, (4) falls as an everyday life experience, and (5) the strategies for managing

fear of falling. Such experiences and strategies became very individualized and imply the

need for future research regarding assessment and intervention of post-stroke fear of

falling.

Collectively, these results indicate that many post-stoke individuals live in the

community, but still demonstrate residual mobility deficits. Decreased gait velocity and

developed fear of falling were related to activity restriction and modification, possibly

leading to further losses of independence, placing individuals at risk for decreased quality

of life and life satisfaction.














CHAPTER 1
INTRODUCTION

The American Heart Association reports stroke to be a common diagnosis

occurring in 700,000 people annually. Stroke is the primary cause of disability and the

third leading cause of death for those over 65 [1-4]. Stroke is also classified as the most

disabling chronic disease and the cumulative consequences are often staggering for

individuals, families, and society [5, 6]. Residual motor, sensory, and visual post-stroke

deficits make mobility impairments common. Changes in gait velocity, falls, and fear of

falling are common post-stroke mobility impairments. All may contribute to decreased

performance of activities of daily living (ADLs), instrumental activities of daily living

(IADLs), social participation, and overall declines in quality of life.

The purpose of this dissertation is to report findings from two studies. Both studies

are secondary analyses of larger studies. The goal of the first study was to evaluate a

clinically meaningful change in post-stroke gait speed and its impact on activity and

participation levels post-stroke. A clinically meaningful change is important to determine

as it is related to patient-valued benefits. Barrett et al. discusses the need to merge

patient-oriented and evidence-based frameworks together by observing an "important

difference" [7]. Such clinical significance can be seen by examining the sufficiently

important difference (SID), the smallest amount of patient-valued benefit required from

an intervention to justify associated costs, risks, and other harms. We observed data on

post-stroke gait speed changes and the existing relationship with ADLs, IADLs, and

social participation to examine a clinically meaningful change in gait velocity.









Data for this aspect of the study were derived from a prospective, randomized,

controlled, single-blind, clinical intervention trial [8]. An analysis of three-month post-

stroke data related to gait speed was completed. Participants were stratified by changes in

gait speed. Comparisons were completed to determine significant differences in ADL,

IADL, and social participation scores between those who succeeded and those who failed

to increase gait speed at three months post-stroke. Literature supports an association

between gait speed and mobility [9, 10]. However, limited research currently exists to

support the relationship between changes in gait speed and the resultant difference in

performance of ADLs, IADLs, and social participation.

The second study was completed to identify and describe the characterizations of

fear of falling as reported by participants who have been discharged home following a

stroke. We used qualitative and quantitative data from a longitudinal multi-site cohort

study exploring stroke recovery and caregiving at one and six months post discharge

following acute stroke [11 ]. We examined the relationship between fear of falling and

demographic variables, depression, and the ability to perform ADLs and IADLs.

Additionally, caregiver depression and burden associated with fear of falling was

explored. Qualitative interviews were semi-structured around issues related to the post-

stroke experience but did not specifically ask about fear of falling. Therefore, the

interviews were examined to identify participants who discussed characteristics related to

fear of falling. The data specific to those with an identified fear were re-coded in QSR N-

6 (qualitative data computer software). Content analysis was used to analyze the

qualitative data and define characterizations of fear of falling across 6 months after

discharge home post acute stroke. Currently, there is a paucity of information related to









the development of fear of falling after stroke. This study provides initial exploration into

this complex syndrome and will supply preliminary data for future research regarding

post-stroke fear of falling and the residual influence it has on activities and participation.

Cumulatively, these research projects provide researchers and clinicians with

valuable information regarding performance of ADLs, IADLs, and social participation

related to both gait speed and fear of falling after stroke. The impact of post-stroke gait

speed on ADLs and IADLs is not well researched and this study contributes critical

information. This research is the first study to examine fear of falling in a stroke

population with longitudinal data that are both quantitative and qualitative. Results from

the study indicates the need for development of a future index related to fear of falling in

the population, and, more importantly, interventions to reduce both falls and manage fear

of falling in the post-stroke population. These studies provide a foundation for future

research related to post-stroke mobility and activities and participation.

Theoretical Models

Two theoretical models have guided this research. The International Classification

of Functioning, Disability, and Health was used to explain the fundamental relationships

between post-stroke mobility and ADLs, IADLs, and participation (see Figure 1-1). An

additional conceptual model was specifically proposed for these research study questions.

It was developed after a review and synthesis of the literature specific to gait velocity and

fear of falling (see Figure 1-2).

The World Health Organization Model: International Classification of Functioning,
Disability, and Health

Various models of disablement have been developed and explored over the years.

Because rehabilitation strives to reverse what was previously known as the "disabling"










process, proactive alterations have occurred in the theoretical models. Therefore they are

now termed "enablement models", and represent models of health and ability. The

International Classification of Functioning, Disability, and Health (ICF) is the model

most frequently used in rehabilitation sciences and was proposed by the World Health

Organization (WHO) [12, 13].

The ICF has recently undergone revisions to better incorporate the concepts of

health and ability and to replace terms such as impairment, disability, and handicap to

allow for a more positive framework and classification system [13]. The ICF provides a

framework for the analysis of health conditions, body structure, body functions, activity

and participation, and environmental and personal factors [12]. There are two parts of the

ICF; the first deals with functioning and disability and is derived of the components of

body structure, body functions, activity, and participation. The second part includes the

components of contextual factors and includes environmental and personal factors. See

Figure 1-1.

Health Condition
(disorder/disease)




Body Structure & Body
Functions Activities Participation




Environmental Factors Personal Factors


Figure 1-1. The ICIDH-2 Model of Disablement

Body structures are the anatomical parts of the body and include organs, limbs, and

their components. Body functions are the physiological or psychological functions of









body systems. Body function and structure impairments are related to significant

deviation or loss.

The activities and participation component collectively covers the complete range

of individual and societal functioning and disability. The model captures the major

actions of all people, regardless of culture or lifespan. Activity is the execution of a task

or action that is completed by an individual in a uniform environment. Activity

limitations are difficulties a person may have in executing activities. Activity includes

self-care, mobility, learning and applying new knowledge, general tasks and demands,

and communication. Participation is the involvement in a life situation in an individual's

current environment. Restrictions in participation are problems a person may experience

in involvement in life situations. Participation includes domestic life, interpersonal

interactions and involvement in relationships, major life areas, and community, social,

and civic life. Activities and participation have two qualifiers within the model. Capacity

is the completion of an item in a neutral or standard environment and focuses on how an

individual actually completes the task. Performance is related to completing the same

item during daily life, at home and in the environment. Capacity limitations indicate the

discordance between capacities of people with and without health related condition.

Performance limitations indicate a need for intervention at the environmental level.

Environmental and personal factors include external features of the physical, social,

and attitudinal environment in which people live and conduct their lives. Products and

technology, natural environments, human-made changes to the environment, support and

relationships, attitudes, and services, systems, and policies are all aspects of

environmental and personal factors.









Theoretical Framework

Substantive reviews of the literature were completed. The literature pertaining to

post-stroke mobility, gait speed, falls, and fear of falling were incorporated into the ICF

model (see Figure 1-2). It was used to guide the research questions and analyses for these

studies.

In this study, the general health condition was "stroke." The type of stroke and

severity of stroke are important aspects that may impact post-stroke mobility. Stroke

related body function and body structure included sensory, cognitive, and motor

impairments. Environmental factors included caregiver depression, burden, and coping.

Personal factors included age, race, and cognition. These stroke related impairments and

personal factors might be related to activity limitations; such as difficulties completing

ADLs and IADLs, including walking, stair climbing, dressing, bathing, toileting, etc.

Mobility is a construct of ADLs and is therefore considered an aspect of activity. Gait

speed and fear of falling are each aspects of post-stroke mobility, and are therefore

considered as activity. It is thought that losses in gait speed and the development of fear

of falling adversely impact ADLs, IADLs, and social participation. Body function and

structure impairments and especially activity limitations may restrict participation in

society, thereby limiting role fulfillment at home, work, and within the social

environment. All of these post-stroke changes may also influence caregiver burden,

coping, depression.

The current study was developed to specifically address the relationships between

changes in gait speed and the development of fear of falling with ADLs, IADLs,

participation, and depression. All aspects of the model may be affected by post-stroke

mobility. Activity, participation, and environmental/personal factors must therefore be











addressed. Importantly, all are related to the greater aspect of quality of life and life


satisfaction.

Health Condition
(disorder/disease)
Stroke
*Type of Stroke
*Severity



Activities
Body Structure & ADLs and IADLs Participation
Body Functions (including mobility, gait speed Social participation
Stroke related and fear f fallmg)
Impairments
Sensory
Cognitive
Motor

Environmental Factors Personal Factors
Caregiver *Age
*Depression *Race
*Burden *Cognition
*Coping


Figure 1-2. Conceptual Model

Research Questions

The following research questions are derived from the relationships depicted in


Figure 1-2. The conceptual model was the guiding focus of this study. We used both


qualitative and quantitative data in this study.


We explored the post-stroke relationship between clinically meaningful changes in


gait velocity and performance of ADLs, IADLs, and social participation.


1. Does a change in gait velocity classification impact the ability to perform ADLs,
IADLs, functional mobility, and social participation after stroke?

We also explored post-stroke fear of falling using qualitative and quantitative data.


Our research question related to examination of the fear of falling qualitative data


include:


2. How do the participants report and characterize fear of falling in the home or
community environment?






8


To complement the study, we examined the relationship between fear of falling and

quantitative data:

3. How is post-stroke fear of falling related to performance in ADLs and IADLs?

4. How does caring for an individual with post-stroke fear of falling impact caregiver
burden and depression?

5. Is there a difference in the proportion of stroke survivors with fear of falling at 1
and 6 months post stroke?














CHAPTER 2
REVIEW OF THE LITERATURE

Introduction

Stroke is a common problem and the leading cause of adult disability in the United

States. There are many residual motor, sensory, and visual post-stroke deficits making

mobility impairments common. Common post-stroke mobility impairments include

decreased gait velocity, falls, and the development of fear of falling. All may negatively

impact performance of activities of daily living (ADLs), instrumental activities of daily

living (IADLs), and social participation. Such restriction in activity and participation has

been associated with declines in life satisfaction and quality of life.

The following review of the literature is based on the International Classification of

Functioning, Disability, and Health (ICF) [12] and the conceptual framework found in

Chapter 1 (Figure 1-1 and 1-2). As stated in Chapter 1, stroke related sensory, cognitive,

and motor impairments negatively influence post-stoke mobility, as demonstrated in

decreased gait speed and increased falls and fear of falling. These changes in post-stroke

mobility may impact activity and participation. Activity and participation limitations may

also negatively influence caregiver burden and depression.

In this review of the literature, there will be an overview of mobility concerns of

the community dwelling elderly. Specifically, gait speed, falls, and fear of falling will be

addressed. The limited existing literature specific to post-stroke gait speed, falls, and fear

of falling will also be presented. Additional literature is presented on the impact of

mobility on activity and participation; some is specific to the post-stroke population, but









much is generalized to the community dwelling elderly. Caregiver burden and depression

are also explored in this review as care needs change for those with decreased activity

and participation. Increased caregiver burden and depression are associated with a

patient's history of strokes, falls, and decreased independence.

The objective of this research was to determine the impact of post-stroke mobility

on activity and participation. Specifically, the relationships between changes in gait speed

and the impact on activity and participation were explored. Additionally, the

characterization of fear of falling by a post-stroke population was described. Performance

of ADLs, IADL, and depression for those with fear was also examined. This research will

provide foundational data for future studies examining the impact of post-stroke mobility

on activity and participation.

Mobility in the Community Dwelling Elderly

Mobility has been defined as the "ability to move from one place to another

without assistance" [14]. It is a component of ADLs and is critical for the maintenance of

independence and a sustained quality of life [14, 15]. Mobility disability is defined by the

inability of individuals to "move effectively in their surroundings" [16]. It is a strong

predictor of physical disability and often the first area in which older adults demonstrate

disabilities [16-18]. The prevalence of mobility disability increases from 7.7% of those

over the age of 65 to 35% for those over 80 years [19].

Disability is a risk factor for loss of independence, admission into care facilities,

increased need for caregiving, and health care utilization [20-24]. Those who demonstrate

mobility limitations are at risk for increased disability, dependence, morbidity, and

mortality [17, 25-32]. Mobility limitations have been utilized in predicating disability

outcomes [31].









Changes in gait velocity, increased number of falls, and the development of fear of

falling are three important aspects of mobility. All are common issues for the community

dwelling elderly population. Disability may occur due to any or all of these mobility

changes.

Gait Velocity

Mobility and mobility disability are commonly demonstrated by changes in gait

velocities. Gait velocities often decrease with age and have been associated with severity

of walking difficulties [33]. Cress et al. found that walking speed was the strongest

indicator of self-perceived physical functioning [34]. Gait velocity has therefore become

a frequently measured outcome and goal of rehabilitation.

Gait velocity as an outcome measure

Numerous elderly specific research studies have utilized gait velocity as a primary

outcome measure to assess mobility impairment [35]. Velocity has been deemed useful in

rehabilitation medicine and research as it correlates well to many gait parameters [36]. It

has been related to discharge placement following hospitalization in the elderly

population [37, 38].

Gait speed is an important measure of stroke recovery as it is simple to measure

and has been demonstrated as reliable and sensitive to the stage of recovery post stroke

[9, 35, 39]. Gait speed has been associated with discrimination of stroke effects and is

related to rehabilitation prognosis [40]. Studenski and colleagues demonstrated gait speed

measures of less than 0.6 meters/second (m/s) as a predictor of future health care

utilization and declines in health status [41]. In their study, 69% of the elderly with a

walking velocity of less than 0.6 m/s developed new personal care difficulty as compared

to 12% of those walking faster than 1.0 m/s.









Gait velocity and other aspects of mobility

Decreased gait speed has been related to falls and fear of falling [42-44]. Hausdorff

et al. reported a relationship between falls and factors such as gait speed and functional

status [45]. Maki demonstrated a relationship between decreased gait speed and increased

falls and fear of falling in the community dwelling elderly population [42].

Falls

A fall has been defined as "an event which results in a person coming to rest

unintentionally on the ground or other lower level, not as a result of a major intrinsic

event (such as stroke) or overwhelming hazard" [46, 47] or as "falling all the way down

to the floor or ground, or falling and hitting an object like a chair or stair" [48]. Falls are

significant mobility issues addressed in the literature for the community dwelling elderly.

Incidence and consequences of falls in the community dwelling elderly

Falls are the leading cause of injurious death for those over 65 in the United States

[49]. At least 30% of those over 65 and residing in the community fall annually; 10-20%

fall two or more times [50]. After age 80, annual fall rates increase to 50% [46, 51]. The

elderly who fall are likely to sustain more fall related trauma and serious injury and

demonstrated increased health care utilization compared to young fallers [52]. Fall related

trauma is more likely to be the cause of death in older fallers [53]

In 2001, more than 1.6 million emergency room visits and 15,000 deaths were

attributable to falls [54]. Severe consequences related to falls include hip fractures and

head trauma, increased health care utilization, declines in ADLs and IADLs, decreased

socialization, increased admissions to long-term care facilities, premature disability, and

death [53, 55]. Additionally, King and Tinetti determined that morbidity, physical injury,









restriction of mobility, reduction of activity and participation, and generalized decreases

in independence were fall related consequences [56].

Long-term care admissions. Donald and Bulpitt completed a longitudinal

prospective cohort study to assess fall related deaths and long-term care admissions [57].

Risk of death increased at both one and three years for recurrent fallers. However, all

who fell demonstrated loss of function and independence, consequently increasing long-

term care facility admissions. Tinetti et al. reported 40% of all nursing home admissions

as being fall related [46].

Fractures as a consequence of falls. Approximately 360,000 adults suffer a fall

related hip fracture each year [49]. Half of those who suffer a hip fracture will never

regain their prior level of functioning. Hip fractures are a significant concern as they are

related to more deaths, disability, and medical costs than all other osteoporotic fractures

combined [58].

Falls are an independent risk factor and contribute to 90% of all hip fractures [59,

60]. Minor injuries such as bruises and abrasions occur after 30%-55% of falls [48, 51,

61] and about 4%-6% of falls end in a fracture, often of the hip [46, 48, 61, 62]. Death is

uncommon following a fall; however, fall related hip fractures are the leading cause of

death for those over the age of 65 [63, 64].

Multifactorial risk factors

A review of the literature indicates fall risks are considered multi-factorial [46, 51,

52, 65-75]. Meta-analyses and predictive models have been used to determine many of

the evidence based risk factors. An epidemiological study determined that over 400 fall

risk factors exist [76]. Factors may differ between community dwelling individuals and

those residing in long term care facilities [66]. Table 2-1 provides a list of common falls









risk factors. Each factor is supported in the literature and by recent meta-analyses [46, 49,

51, 52, 66, 68-71, 77].

Table 2-1. Multifactorial risk factors for falls


Risk Factor


Disease & Disability
Stroke
Parkinson's Disease
Cardiovascular function/
disease/blood pressure issues
Arthritis
Neuromuscular disease
Depression
Mobility Impairments
Previous falls
Balance and gait deficit
Decreased gait speed/gait
impairments/mobility impairments
Foot problems
Decreased strength
Other
Environmental factors
Fear of falling
Medications and polypharmacy
Cognition
Vision and hearing
ADL participation
Use of assistive device
Female gender
Age
Urinary incontinence


Sunoortin2 Evidence


[52, 78-86]
[49, 61, 77, 87-89]
[49, 66, 77, 90, 91]

[49, 52, 77, 92-94]
[49, 77]
[49, 52, 66, 77]

[52, 56, 95, 96]
[46, 52, 66, 97-100]
[42-46, 66, 69, 78, 90, 95, 97, 101]

[46]
[46, 52, 61, 66, 71, 74, 90, 95, 97, 99, 102-109]

[46, 66, 110, 111]
[96, 112-115]
[46, 66, 90, 116, 117]
[46, 52, 66, 90, 118-122]
[48, 52, 66, 90, 97, 123]
[52, 66, 90, 107, 124]
[52]
[46, 100, 125-130]
[46, 74, 126, 131-133]
[66, 69, 74, 134, 135]


Number of risk factors

The risk of falling is exacerbated when the actual number of existing risk factors is

increased [46, 70]. Tinetti and colleagues completed a community based study examining

those with and without fall risk factors [46]. At one year, 27% of individuals with one or

no risk factors fell compared to 78% of those with four or more factors. Nevitt and

colleagues indicated falls increased from 10% to 69% as the number of risk factors

increased from one to four or more [61]. Robbins et al. compared one-year fall rates for


I









those with and without three identified risk factors: hip weakness, unstable balance, more

than four medications [100]. One hundred percent of those with all three risk factors fell

compared to 12% who had none of the risk factors. Furthermore, Tinetti et al. ascertained

that falls increased from 0% in those with 0-3 risk factors to 100% for those with seven

or more factors [90].

Fear of falling as a risk factor and consequence of falls

Fear of falling has been established as both a risk factor and consequence of falls

[96, 112, 113]. Fear of falling may develop post-fall, or a fall may occur due to severe

issues related to fear of falling [96]. Psychological trauma related to a fall may be related

to concern of suffering another fall or a result of changes in function and pain related to a

previous fall. Additionally, being stranded on the ground after a fall is a common fear.

Friedman et al. determined fear of falling as a significant risk factor for future falls,

and also demonstrated falls as a risk factor for the development of fear of falling [96].

Delbaere and colleagues examined the "vicious" cycle that exists between falls and fear

of falling [114]. The authors concluded fear of falling is both a risk factor and serious

consequence of falls.

Fear of Falling

Fear of falling was first identified and termed "postfall syndrome" [136] or

ptophobia in 1982 [137], and then simply "fear of falling" in the later 1980's [138, 139].

Fear of falling has been defined as a "disabling symptom of impaired mobility among

frail older people that is significantly associated with depression, diminished performance

in gait, and restricted IADL" [113] and "as a lasting concern about falling that leads to an

individual's avoiding activities that he/she remains capable of performing" [140]. Others

have considered fear of falling as a loss of confidence balance abilities [141, 142]. It has









also been defined as a general concept that describes low confidence (efficacy) for

avoiding falls and simply being afraid to fall [143].

Incidence of fear of falling in the community dwelling elderly

Fear of falling is a common difficulty faced by the elderly and is one of the greatest

fears experience by the elderly [115]. Walker and Howland compared fear of falling to

the fear of robbery, fear of forgetting an important appointment, fear of financial

difficulties, and fear of losing a cherished item. Twenty-five percent of the 115

community based participants determined fear of falling as their greatest fear.

Great variability exists surrounding the incidence of fear of falling and incidence

may or may not be related to a previous fall. Researchers have indicated fear of falling in

29%-92% of those recently sustaining a fall and 12%-65% of those without a recent fall

[46, 70, 113, 115, 144-152]. Fear may develop simply due to knowing someone who had

sustained a serious fall or fall related injury [153].

Myers et al. examined fear of falling in community dwelling elders [150]. Fear of

falling was assessed by asking "are you afraid of falling?"; 56% of those with a previous

fall and 58% without a fall reported being fearful. Further analysis with the Falls Efficacy

Scale determined similar results. The authors expressed that fear of falling may be

underestimated in the elderly due to a fear of institutionalization and a resultant refusal to

participate in such research.

Arfken completed a study to better determine the prevalence and the correlates of

fear of falling [43]. Fear of falling was determined to be more prevalent among the older

participants. Dependent on age, 10%-16% of men reported to be moderately fearful and

0%-5% were very fearful. Comparatively, 15%-34% of women were moderately fearful

and 6%-12% were very fearful. More recently, Stolze et al. completed a prospective









study to investigate the prevalence of falls in differing neurological diseases [154]. Prior

falls were significantly correlated with fear of falling; 57% of the fallers reported fear of

falling compared to 24% of the nonfallers.

Fear of falling risk factors

Like falls, fear of falling is considered to have multifactorial risk factors. Other

than a previous fall, risk factors correlated to the development of fear of falling include:

increased age [43, 144, 148], female gender [43, 144, 148, 155, 156], hospitalization

[143], and dizziness [157]. Murphy et al. completed a study to identify predisposing risk

factors for the development of fear of falling in an all female community dwelling

population [158]. Predisposing factors for fear development included: age over 80, visual

impairments, sedentary lifestyle, and lack of available emotional support.

Mobility [42, 155] and prior falls [96, 112, 113] are significant risk factors for the

development of future fear of falling. Maki and colleagues completed a cross-sectional

study to investigate the relationship between fear of falling and postural balance and

control [155]. The researchers discussed significantly decreased scoring on balance

assessments for those with fear of falling. Additionally, Maki et al. demonstrated an

association between fear of falling and changes in mobility, such as decreased stride

length, decreased speed, increased double stance time, decreased clinical gait scores, and

increased stride [42]. Vellas et al. demonstrated those with a reported fear of falling

experienced greater balance and gait disorders compared to those without fear of falling

[144]. Ultimately, participants with fear of falling endured decreases in mobility.

Friedman et al. examined the temporal relationship and the shared predictors of

falls and fear of falling [96]. Falls and fear of falling data were collected at both baseline

and 20 months. If participants were assessed as fearful of falling, they were asked about









fear related activity restriction. During the initial assessment, 27.8% participants reported

a fall, 20.8% expressed fear of falling, and 46.2% of those with fear of falling had

curtailed activities. At follow-up, nonfallers with fear were more likely to report falls

than those without fear (32.6% vs 17.9%). Fallers with no fear of falling at baseline were

twice as likely than nonfallers to report fear at follow-up (20.6% vs. 11.6%). Regardless

of fall status, all who expressed fear of falling at baseline were very likely to express fear

again at 20 months.

Researchers have discussed "evidence of a spiraling effect of increasing falls, fear,

and functional decline" [114]. They stated fear of falling is not only an acute outcome

secondary to falls, but "more likely recognition of being at risk, both of falling and of the

adverse outcomes that can result from falls". Additionally it was concluded that once fear

develops, it is likely to persist and influence activities and future fall rates.

Mobility in the Post-Stroke Population

Stroke and Mobility Impairment

Post-stroke residual deficits may exacerbate the mobility issues of the community

dwelling elderly population. Such mobility impairments may negatively gait speed, falls,

and fear of falling after a stroke.

Stroke

Stroke is the primary cause of disability and is the third leading cause of death for

those over the age of 65 [1-4]. The American Heart Association reports stroke as a

common neurological event occurring in 700,000 people annually; over 4 million are

living with residual deficits [159]. O'Sullivan has defined a stroke, or cerebrovascular

accident (CVA), as "an acute onset of neurological dysfunction due to an abnormality in

cerebral circulation with resultant signs and symptoms that correspond to involvement of









focal areas of the brain" [160]. It has been classified as the most disabling chronic disease

with deleterious consequences for individuals, families, and society [5, 6].

Because age is a known risk factor for stroke, stroke incidence is expected to

increase as the population ages. Stroke prevalence is expected to increases as stroke

survival rates continue to increase [161, 162]. The majority of stroke survivors will be

discharged from the acute care setting and will return home with mild or moderate

physical, cognitive, or emotional deficits [78]. For example, in the Department of

Veterans' Affairs, 72% of all stroke survivors were discharged home into the community

in 1999 [163].

Gait Velocity After Stroke

Mobility impairment, such as decreased gait velocity has been related to stroke

related outcomes. Perry and colleagues assessed the relationship between gait speed and

mobility in participants 3 months post-stroke [9]. Six ambulation categories were

developed, each was related to post-stroke mobility and ambulation in and out of the

home (borrowed from Hoffer et al. who utilized a four step walking handicap scale for

children [164]). See Table 2-2 for the six ambulation categories.

Perry et al. used five clinical measures to place post-stroke participants into one of

the six categories. The measures included: a walking ability questionnaire, stride

characteristics including gait speed, upright motor control testing, and proprioception.

Many analyses were completed, and the difference in gait velocity demonstrated the

greatest statistical significance between categories. Discriminate analyses were

completed and identified gait velocity as the only clinical measure to significantly predict

placement into the categories. Those considered as physiological walkers had a mean









velocity of 0.1 .03 m/s compared to community walkers with a gait velocity of 0.8 +

0.18 m/s.

Table 2-2. Six ambulation categories


Ambulation level
Physiological walker
Limited household walker

Unlimited household
walker

Most-limited community
walker


Least-limited community
walker
Community walker


Ambulation ability
Walks only for exercise or in therapy
Requires assist for some walking activities, does walk
during some home activities
Able to walk for all household activities, has difficulty with
stairs and uneven terrain, not able to enter and leave the
house independently
Able to enter and leave their home independently, is able to
ascend and descend curbs, able to manage stairs but with
assistance, independent in at least one community activity,
but needs assistance with others
Independent in stairs, all moderate community activities,
and in local stores and uncrowded shopping centers
Independent in all home and community activities, can walk
with crowds and on uneven terrain, and able to be
independent in shopping centers


The classification system was condensed to depict three distinct gait velocity based

classifications (see Table 2-3). This was necessary due to the similarities in gait speed

between the household walkers. A walking speed of less than 0.4 m/s was determined

equivalent to severe gait impairments and the household ambulation category. Limited

community ambulation equals moderate gait impairments and speeds between 0.4 m/s

and 0.8 m/s. Those in the community ambulation category walk over 0.8 m/s and are

considered to have mild or limited post-stroke gait impairment. The normal healthy older

population has been documented to walk at a gait velocity of 1.33 m/s [165].

Table 2-3. Gait Speed Classification
Speed, m/s Impairment Ambulation Ability
< 0.4 Severe Household ambulation
0.4-0.8 Moderate Limited Community Ambulation
> 0.8 Mild Community Ambulation
1.33 None Normal, Healthy Elderly Population









Lord and colleagues extended this work and evaluated the relationships between

post-stroke gait speed and community ambulation [10]. Community ambulation was

defined as "locomotion outdoors to encompass activities such as visits to the

supermarket, shopping malls, and back; social outings; vacations; and pursuit of leisure

activities". All 130 post-stroke participants lived at home, 115 participants received

physical therapy for mobility impairments and 15 did not require therapy. Mobility

outcome measures assessed gait velocity, indoor and outdoor walking ability, functional

mobility, and gait endurance. An additional self-report questionnaire assessed community

ambulation according to unsupervised mobility. Participants were placed into one of four

ambulation categories (see Table 2-4.), 1) not ambulating outside of the home, 2)

ambulating as far as the letterbox, 3) ambulating within the immediate environment, 4)

ambulating in a shopping center and/or other places of interest.

Those not requiring physical therapy post-stroke demonstrated the fastest gait

velocity. Gait speed was within normal limits for this group and significantly higher than

the overall mean, 1.36 m/s compared to .94 m/s. Gait speed differed between the four

categories and increased as community ambulation increased (Table 2-4). The self-report

questionnaire indicated 14.6% of the participants were unable to leave their home

unsupervised, 16.9% were able to walk to the letterbox, 7.6% were limited to ambulating

in their immediate environment, and 60.7% were able to ambulate within a shopping

center and/or other place of interest. The authors concluded gait velocity was important to

community ambulation and demonstrated that nearly one third of the sample was not able

to ambulate independently within the community after a stroke.









The relationship between gait speed and mobility has been supported in the

literature. However the relationship between changes in post-stroke gait velocity and the

ability to perform ADLs, IADLs, and social participation has never been explored.

Table 2-4. Community ambulation
Group Community Ambulation Level % of Sample Speed (m/s)
1 Unable to leave home 14.6% 0.515 m/s
2 Able to walk to letter box 16.9% 0.66 m/s
3 Limited to immediate environment 7.6% 0.82 m/s
4 Ambulate in shopping center 60.7% 1.14 m/s

Falls After Stroke

Falls are considered the most common medical complication after stroke [166]. Fall

rates increase significantly post-stroke due to motor and sensory impairments and

residual functional, cognitive, and emotional deficits. These deficits are often related to

mobility impairments and losses in ADLs, IADLs, social participation, and overall

quality of life. Falls may contribute to post-stroke residual impairments and further

decreased abilities to complete ADLs and IADLs.

Researchers have shown 22-39% of the acute stroke population falling before

hospital discharge [166-168]. Those who fall while in the hospital are twice as likely to

fall after discharge. Existing research indicates falls remain an issue at discharge [78, 79]

and still at 10 years post-stroke [82, 169]. Forster and Young examined falls incidence

and consequence and reported 73% of the participants fell in the first six-months post-

stroke [79]. Importantly, only 21% of those who fell during the study had fallen prior to

their stroke. The "fallers", those with two or more falls, walked with a slower gait speed,

were engaged in less social activity, and were more likely to be depressed.









Stroke as a risk factor for falls

Stroke is one of the most commonly cited risk factor for falls [82]. Hyndman et al.

determined stroke as a risk factor for falls in a cross-sectional, observational study [170].

Half of the 41 community dwelling stroke survivors sustained a post-stroke fall and 10

had fallen more than once. Additional risk factors for those deemed "repeated fallers"

included: post-stroke mobility deficits, upper extremity ability, and declines in ADLs and

IADLs. Byers and colleagues studied acute stroke survivors and concluded post-stroke

fall risk factors included a history of falls, impaired decision making ability, restlessness,

generalized weakness, and abnormal hematocrit levels [81]. Jorgensen et al. determined

the risk of falling was at least twice as high for those post-stroke in a case-control study

[82]. Forster and Young found those post-stroke who fell in the hospital were twice as

likely to fall after being discharged home [79].

Yates and colleagues indicated that those post-stroke are at increased risk for

falling [78]. They investigated the effect of accumulated impairments on the risk of

falling in community-dwelling stroke survivors. Of 280 participants, 51% sustained a fall

between 1 and 6 months post-stroke. Accumulated post-stroke impairments were

characterized as motor, motor and sensory, or motor and sensory and visual. Fall rates for

those with accumulated deficits were compared to those without any of the impairments.

Results from a multiple logistic regression indicated that the risk of falling increased with

motor impairment and motor and sensory impairments. Interestingly, those with motor

and sensory and visual impairments had decreased falls risk. This was most likely due to

increased severity of the stroke, decreased balance, and therefore overall decreased

mobility. The authors concluded that the community-dwelling post-stroke population

demonstrate a higher risk of falling.









Post-stroke hip fractures

Those post-stroke are at risk for both falls and the development of osteoporosis of

the hemiparietic limb, consequently, increasing risk for hip fractures [58]. Ramnemark

and colleagues observed hip fracture incidence in 1139 post-stroke individuals [171]. One

hundred and twenty participants sustained 154 fractures, 84% of all fractures were

secondary to an accidental fall. Hip fractures accounted for 70 (45%) of all recorded

fractures and most affected the paretic side. A four-fold increase of hip fracture was

demonstrated in this post-stroke population.

Ramnemark, et al. completed an additional study examining those sustaining a

femoral neck fracture [172]. Short-term outcomes and mortality were compared for those

with and without a history of stroke. In total, 27.4% participants had sustained a stroke

prior to the hip fracture. Additionally, the majority of hip fractures occurred to the

hemiparietic limb and survival rates were reduced for these patients.

Fear of Falling After Stroke

Post-stroke balance confidence

Currently, there is little research regarding the prevalence of fear of falling

development in the post-stroke population. At this time, the only work related to post-

stroke fear of falling has been completed to validate fear of falling assessments for the

post-stroke population [173-175]. The researchers have indicated that those who have

sustained a stroke are likely to exhibit lower falls confidence while performing activities,

thus demonstrated increased fear of falling.

Decreased falls confidence, or falls efficacy, is based on Bandura's theory of self-

efficacy [176]. Those with low self-efficacy for a particular activity will tend to avoid

that activity. In contrast, those with high self-efficacy will initiate the activity with









enhanced confidence. The self-efficacy theory suggests a reciprocal relationship between

efficacy and function; efficacy may influence function, but the ability to complete

functional activities also influences efficacy. Fear of falling assessments are often based

on self-efficacy and assess whether a person feels confident in their ability to complete

activities with out sustaining a fall [112, 147, 174].

Post-stroke fear of falling assessments

Hellstrom and Lindmark completed a test-retest reliability study of the expanded

Falls Efficacy Scale (Swedish Version) (FES(S)) and compared group differences in

scores on the assessment [173]. The FES was developed by Tinetti et al. and measures

self-perceived fear of falling during the performance of 10 common activities [112]. The

FES(S) includes an additional three items, getting in and out of bed, grooming, and

toileting. These three items were added due to the reduced independence often sustained

by the post-stroke population. Thirty post-stroke participants were included, overall-test-

retest-reliability was high and the FES(S) was indicated as a reliable assessment of falls

efficacy in the post-stroke population. Hellstrom and colleagues completed additional

reliability assessments to determine the ability of the of the FES(S) to assess clinically

meaningful changes over time in the post-stroke population [174]. The changes as

measured by the FES were compared to changes evident using the Berg Balance Scale

and the Fugl-Meyer balance and motor function subscale. The assessments were

completed at admission and discharge from rehabilitation and 10 months later. The

analyses of responsiveness determined individuals post-stroke demonstrated decreased

fall related self-efficacy compared to elderly participants in other fall studies.

A very recent study examined the reliability and validity of the Activities-specific

Balance Confidence (ABC) Scale for those post-stroke [175]. The ABC is a previously









validated and reliable measure of balance confidence that measures confidence in

performing various tasks without falling [150, 177, 178]. All participants were

community dwelling ambulatory older adults who had sustained a stroke at least one year

prior to the study. Significant correlation existed between the ABC and gait speed and

balance assessments (Berg Balance). The authors concluded the ABC reliable and valid

for the post-stroke population.

Post-stroke fear of falling

While there is profuse research related to fear of falling in the community dwelling

elderly, there is a paucity of information specific to the development of fear of falling

after stroke. It can be construed that as fall rates increase [79] and mobility decreases

after stroke, an increase of fear of falling will be demonstrated. Motor function, balance,

mobility, emotional well-being, and attention may all be diminished following a stroke.

All may influence falls incidence and the development of fear of falling [78, 79].

Increased fear of falling may too be related to a realization of physical and cognitive

declines developed post-stroke.

Fear of falling has been demonstrated as both a risk factor for falls and as a serious

consequence resulting from falls [96, 112, 113]. With post-stroke falls incidence as high

as 73% [79], it is likely that the rate of fear of falling is equally exacerbated after a stroke.

However, there is little evidence-based literature to support this relationship.

Activity and Participation

Restriction of Activity and Participation

Restriction of activity has been related to the development of disability in the

elderly population. Health and functional status, health care utilization, decreased

independence, increased social isolation, and overall quality of life and life satisfaction









are all impacted by activity curtailment [179, 180]. It is related to decreased

independence and increases in caregiver burden. Restriction of activity has been used as

an outcome measure in geriatric intervention trials attempting to reduce disability [181-

183]. Thus activity restriction is an important consideration for the community dwelling

post-stroke population.

Gill et al. attempted to identify health and non-health related problems associated

with activity restriction [179]. Within the 15-month study period, 76.6% of the elderly

sample restricted activity during at least one month and 39.3% for two consecutive

months. Health care utilization was elevated during months of activity restriction. Gill

and colleagues also evaluated the relationship between restricted activity and disability

development [180]. The authors concluded that activity restriction was significantly

related to disability development for the community dwelling older population.

Guralnik et al. explored mobility disability and found that limitations in mobility

can lead to decreased performance of ADLs [17]. Such limitations in ADLs and IADLs

have been related to disability and increased health care utilization. It therefore is

essential to explore the impact of mobility, such as gait speed, falls, and fear of falling, on

activity and participation.

Gait Speed, Activity, and Participation

Gait speed has been associated with community mobility [9, 10]. Those with

declines in gait speed may demonstrate decreases in activity and participation and

experience decreased opportunities to return to societal and personal roles [184].

Consequently, perceived quality of life and life satisfaction are at risk.

Potter and colleagues completed a study to determine a relationship between gait

speed and ADL performance in the elderly population [184]. All participants were older









than 65 and independently mobile. Participants were all admitted to inpatient or

outpatient care, but not hospitalized due to a specific diagnosis. All participants had

nonsurgical hospitalizations, were medically stable, and were appropriate for

rehabilitation. Participants with differing diagnoses and a range of functional abilities

were eligible for inclusion, therefore, those with acute infectious illnesses, strokes, acute

relapses of chronic neurological disease (Parkinson's disease, multiple sclerosis), falls,

and cardiovascular pathologies were included. Gait speed, ADLs, and mental status were

assessed. Gait speed ranged from 0.05 m/s to greater than 0.55 m/s and was placed into

one of six categories.

The authors concluded that an association between decreased gait speed and ADL

ability levels was evident. Those with a gait speed of less than 0.25 m/s were more likely

dependent in one or more ADL; only 36% of those with gait speed less than 0.25 m/s

were considered independent in all ADL functioning. In contrast, 72.1% of those with

gait speed between 0.35 m/s and 0.55 m/s were independent in all ADLs.

Studenski et al. completed a prospective cohort study to determine whether gait

speed could be used as a "clinical vital sign" in a community dwelling elderly population

[41]. Outcome measures included demographics, health and functional status, and

physical performance. Those with a gait speed of less than 0.6 m/s were categorized as

slow walkers and demonstrated a 69% incidence of new personal care difficulty.

Comparatively, 28% of those with a gait speed of 0.6 to 1.0 m/s and 12% with gait speed

greater than 1.0 m/s demonstrated new care needs. The researchers concluded that a

slowing of gait speed has negative effects on overall mobility and the ability to complete

ADLs and IADLs.









Falls, Activity, and Participation

Restriction of mobility and declines in ability to complete ADLs and IADLs are

severe consequences associated with falls [56, 138, 170]. All are negatively related to

decreased independence and quality of life. Stel and colleagues examined fall related

declines in functional status and physical activity [185]. Functional status was measured

with stair climbing, dressing, standing from a chair, cutting toenails, walking outside and

transportation. Physical activity changes were measured with walking, bicycling,

gardening, sport activities, and light and heavy household activities. Post-fall declines in

functional status were reported by 35.3% of their sample and 15.2% reported declines in

physical activity. Vellas et al. determined that those who fell in a prospective study

demonstrated restricted activity and decreased independence at 6 months [138].

Tinetti and Williams completed a study to determine the impact of falls and fall

related injuries on ADLs, IADLs, social activity, and advanced physical activities in a

community dwelling elderly population [141]. At one and three years, falling was

associated with declines in ADLs, IADLs, and social participation. Those with multiple

falls experienced greater declines in activity and participation and those with injurious

falls also demonstrated declines in advanced physical activity. An association between

declines in activity and falls incidence and/or severity of injury was demonstrated, thus

indicating a "dose response" relationship between falls and functional losses.

Yardley and Smith examined the most commonly held beliefs regarding falls and

activity curtailment [186]. The Consequences of Falling (CoF) Scale was developed and

validated by the authors. It assessed types of fear related to falls, such as fear of physical

injury, fear of long-term functional incapacity, fear of subjective anxiety, and fear of

social discomfort. Demographics, mobility level, use of a walking aide, falls history and









incidence, falls related safety, and fear of falling were also assessed. Nearly half of the

participation reported a fall in the previous year. Long term functional disability and loss

of independence were cited as the most common fears. Social discomfort and a loss of

confidence and personal identity were also indicated as common fears. Activity

restriction was correlated with anticipated damage to personal identity and loss of

independence. Social participation was avoided to decrease the risk of social

embarrassment secondary to a fall. The CoF was correlated to activity avoidance, but

importantly, it also predicted increased avoidance of activity performance at follow up.

Fear of Falling, Activity, and Participation

Activity restriction has been demonstrated in 20% to 55% of those reporting fear of

falling [46, 93, 148, 187]. Activity limitations and decreased social participation may be

due to fear of falling or due to the injury or pain experienced from a previous fall [46, 48,

188]. Overall decreased independence, quality of life, and life satisfaction are at risk due

to fear of falling related changes in activity and participation.

Fear of falling has been related to declined performance of ADLs and IADLs,

social participation, and community integration [43, 137, 143, 149, 151, 152, 189-192].

Additionally fear of falling is related to decreased mobility, stair climbing, vision, general

health, depressed mood, decreased social and physical activities, and poor life satisfaction

[10, 56, 113, 140, 147, 186]. Fear of falling is associated with deteriorated health status

[143, 144, 148, 149, 152] and therefore negatively influences physical and functional

well-being [193]. All lead to further functional declines, decreased quality of life, and

increased caregiver burden [113].

Li et al. summarized a relationship regarding fear of falling and concluded that fear

negatively influences falls related self-efficacy [194]. This subsequently impacts balance,









physical ability, and mobility impairments. This cycle accelerates declines of physical

health, activity, and participation; possibly increasing the incidence of falls. Delbaere et

al. emphasized the "vicious cycle" of frailty regarding fear related avoidance of activity.

They concluded an association between fear of falling with new physical declines such as

increased frailty, decreased postural control, and decreased muscle strength, and an

overall increase of falls risk, thus leading to increased fear of falling [114].

The literature regarding the impact of fear of falling on activity and participation is

profuse. It has been identified, reviewed, and synthesized into an evidenced based table

found in Appendix a. It is evident from this review of the literature that those with

developed fear of falling are at great risk for decreased performance in ADLs, IADLs,

and social participation, and are therefore at significant risk for declines in quality of life

and life satisfaction.

Caregivers

Stroke and Caregiving

As demonstrated in the conceptual model, post-stroke mobility disability may

negatively impact activity, participation, and depression, thereby increasing dependence

and possibly increasing caregiver depression and burden. A review of the literature

reveals abundant caregiving research, however, there is a paucity of research specifically

related to caregiving after a stroke or specifically regarding the burden and stress

experienced by informal caregivers [4].

Those participating in post-stroke caregiving may provide assistance in many life

domains including mobility, self-care, and communication. However, stroke related

complications such as cognitive impairment, depression, and personality changes may

require increased provision of caregiving and assistance [4, 195]. A post-stroke reduction









in ADL and IADL performance frequently results in reduced levels of functional

independence and subsequently increases the necessity of additional care in the home.

Often, those post-stroke are dependent on caregivers to maintain community living and

stave off facility or institution admission. The review of the literature indicated more

research is necessary, specifically in the areas of caregiver physical health, ethnicity, and

caregiver interventions.

Mobility Disability and Caregiving

Researchers have demonstrated relationships between mobility disability and

limitations in activity and participation and consequential losses of independence, and

increased need for care, health utilization, and admission into care facilities [14, 15, 20-

24]. Specifically, caregiving after falls has been explored. The resulting complications of

a fall can be severe and include death, fractures, and further losses of independence. It is

therefore expected that falls are negatively associated with caregiver burden and

depression. Forster and Young demonstrated negative effects for the caregiver when post-

fall declines in ADL performance were evident [79]. The caregivers taking care of

"fallers" were more stressed, and one-third of all caregivers stated that concern for a fall

limited their own social activity. Stolze et al. also indicated increased burden for those

caring for the post-fall population [154]. Howland and colleagues also demonstrated a

relationship between caregiver support and fear of falling related activity curtailment

[148].

There has been no research completed specifically examining caregiving after fear

of falling development or changes in gait speed. However it is expected that caregiving

needs will increase due to mobility related declines in performance of activities.









Caregiver Depression

Researchers have indicated high levels of depression associated with stroke

survivor caregivers compared to non-caregivers [4]. The prevalence of depression in the

caregiving population ranges from 34% to as high as 52% [196-199]. Spousal and female

caregivers have demonstrated increased depression which tends to persist over long

periods of time [200].

A Japanese study demonstrated depression in 52% of 100 stroke caregivers, this

was double the depression rate for the control group (23%) [201]. Hartke and King found

that depressed caregivers were more likely to have difficulty with caregiving, report more

problems with the care recipient, experience financial concerns, and report a decrease in

social involvement [202]. Researchers have found a relationship between increased

stroke caregiver depression and increased stroke severity [203, 204]. Kotila et al

compared the incidence and severity of depression at 3 and 12 months post-stroke [205].

Both stroke survivors and their caregivers demonstrated increased levels of depression

which were maintained at the one-year follow up.

Caregiver Burden

Morimoto and colleagues found that the strongest predictor of declining quality of

life for stroke caregivers was a high level of caregiver burden [201]. Burden is caused by

feelings of large responsibility, uncertainty about the care needs of the stroke survivor,

decreased social interaction, and being the sole provider of care [206]. Bugge and

colleagues (1999) studied caregivers at 1, 3, and 6 months post-stroke. The amount of

time spent helping a patient, the amount of time spent with the patient, and the

caregiver's health were determined as the most influential factors of caregiver strain









[207]. Caregivers providing greater levels of care (e.g. toileting, bathing) experienced

greater emotional distress and greater caregiver burden [208, 209].

Summary of the Literature Review

This review of literature demonstrates that post-stroke motor, sensory, and

cognitive impairments influence mobility. Falls, fear of falling, and gait speed are all

impacted aspects of post-stroke mobility and all may be related to restriction of activity

and participation. Activity curtailment has been related to decreases in quality of life and

life satisfaction.

There is no research specific to the development of fear of falling post-stroke. This

research was completed as an initial exploration of fear of falling in the post-stroke

population. Fear of falling was characterized for the post-stroke population, and activity

restriction was explored. Similarly, the relationship between post-stroke gait speed

changes and its impact on activity and participation were evaluated. This research will

provide a foundation for exploring the impact of post-stroke mobility on activity and

participation.














CHAPTER 3
THE IMPACT OF POST-STROKE GAIT VELOCITY CHANGES ON
ACTIVITY AND PARTICIPATION

Introduction

The American Heart Association reports that 700,000 people sustain a stroke

annually [159]; it is the primary cause of adult disability [2-4]. Stroke related deficits

include motor, sensory, and cognitive impairments that negatively influence mobility.

Losses in mobility are often reflected by declines in gait velocity [40, 210]. Mobility

impairments and changes in gait velocity are related to losses of independence and

decreased ability to reengage in the community [9].

Gait speed is an important clinical and research outcome measure. It is a common

measure of mobility and a reliable, valid, and sensitive measure of post-stroke locomotor

recovery [9, 39]. It discriminates the effects of stroke and is related to the potential for

rehabilitation recovery [40]. Gait velocity is a predictor of health status and health care

utilization in the elderly [41]. It is associated with performance of activities of daily

living (ADLs) and community ambulation [9, 10, 184].

Potter et al. determined a relationship between gait speed and ADL performance in

the community dwelling elderly [184]. Participants with multiple diagnoses were

included and those with decreased gait speed demonstrated decreased independence. A

gait speed less than 0.25 meters per second (m/s) was associated with dependence in one

or more ADL; only 36% of those with gait speed less than 0.25 m/s were considered









independent in all ADLs. In contrast, 72.1% of those with gait speed between 0.35 m/s

and 0.55 m/s were independent in all ADLs.

Perry et al. examined the association between post-stroke gait velocity and

ambulation [9]. The authors developed an ambulation classification related to necessary

gait speed for home and community ambulation. Household ambulation was equal to

severe gait impairment and velocity less than 0.4 m/s. Limited community ambulation

was equivalent to moderate gait impairments and walking between 0.4 m/s and 0.8 m/s.

Community ambulation indicated mild impairment and speed over 0.8 m/s. Increases in

gait velocity were related to improved home and community ambulation.

The relationship between post-stroke gait speed and community ambulation was

further explored by Lord and colleagues [10]. Participants included 115 individuals who

received physical therapy for mobility impairments and 15 not requiring such therapy.

Mobility outcome measures assessed gait speed, indoor and outdoor walking ability, and

gait endurance. An additional self-report questionnaire assessed unsupervised mobility.

Participants were categorized by community ambulation levels as seen in Table 3-1. Gait

velocity differed between the categories and increased from 0.52 m/s for those unable to

leave home to 1.14 m/s for those able to ambulate in a shopping center. One third of the

sample was not able to ambulate independently within the community after a stroke.

Table 3-1. Community ambulation and gait speed
Group Community Ambulation Level % of Sample Speed (m/s)
1 Unable to leave home 14.6% 0.52
2 Able to walk to letter box 16.9% 0.66
3 Limited to immediate environment 7.6% 0.82
4 Ambulate in shopping center 60.7% 1.14

In summary, the relationships between gait speed and ADL performance in the

community dwelling elderly and between gait speed and post-stroke ambulation are well









established [9, 10, 184]. However, it is not known whether a change in post-stroke gait

velocity is "clinically meaningful", as reflected by improved functional abilities such as

activity and participation. A clinically meaningful change is important to determine as it

is related to patient-valued benefits. Barrett et al. discussed the need to observe a

clinically "important difference" by merging patient-oriented and evidence-based

frameworks together [7]. Such clinical meaningfulness can be seen by examining the

sufficiently important difference (SID), the smallest amount of patient-valued benefit

required from an intervention to justify associated costs, risks, and other harms. Lord and

Rochester recently stated a need for a conceptual framework related to post-stroke

mobility and that there is "no guarantee that increases in gait velocity will denote a

meaningful improvement in performance" [211]. The objective of this study was to

determine whether a change in gait speed over three months was clinically meaningful as

reflected by the impact on ADLs (including mobility), instrumental activities of daily

living (IADLs), and social participation after stroke.

Methods

Design

Data in this study are derived from a parent study; a prospective, randomized,

controlled, single-blind, clinical intervention trial [8]. The trial was completed to

determine the effects of a therapist-supervised 12-14 week home-based, structured, and

progressive exercise intervention on participants post-stroke. The intervention focused on

upper and lower-limb strength, balance, endurance, and increased use of the affected

extremities. The intervention group was compared to a usual care group who received

rehabilitation as prescribed by their physician and bi-weekly visits from research staff

Informed consent was received from all participants through methods approved by the









Institutional Review Board of the university and each participating facility. All

participants were recruited from an ongoing stroke registry. This secondary analysis was

approved by the University of Florida Health Science Center Institutional Review Board.

This analysis did not examine differences between intervention and usual care

groups. Rather we examined the differences in ADLs, IADLs, and social participation

between those who did and did not successfully advance to the next ambulation

classification as portrayed by Perry et al. [9]. For example, the participants considered

successful, transitioned from an initial gait velocity of less than 0.4 m/s to 0.4 to 0.8 m/s

or faster or they advanced from an initial gait velocity between 0.4 to 0.8 m/s to greater

than 0.8 m/s. Gait velocity was measured at baseline and repeated at 3 months.

Participants

All participants were selected from one of 17 medical facilities, all of which were

partaking in an ongoing Kansas City Stroke Registry. All those registered gave informed

consent and permission to be screened for eligibility for future research studies. Those

eligible for the registry had a confirmed diagnosis of a stroke within 3-28 days, were over

age 50, and lived within a 50-mile radius. Registry exclusion criteria included the

following: subarachonoid hemorrhage, being lethargic, obtunded, or comatose,

uncontrolled blood pressure, hepatic or renal failure, NYHA III/IV heart failure, known

limited life expectancy, or pre-stroke disability in self care; or previously lived in a

nursing home prior to the stroke.

Those in the registry were eligible to be screened for this randomized clinical trial.

Inclusion for the parent clinical trial included: (1) stroke within 30-150 days, (2) ability to

ambulate 25 feet independently, (3) mild to moderate stroke deficits defined by a Fugl-

Meyer score of 29 to 90 for upper and lower extremities, an Orpington Prognostic Scale









score of 2.0 to 5.2, and palpable wrist extension on the involved side; and (4) Folstein

Mini-Mental Status examination score greater than 16. Exclusion criterion included: (1)

serious cardiac conditions (hospitalization for heart disease within 3 months, active

angina, serious cardiac arrhythmias, hypertrophic cardiomyopathy, severe aortic stenosis,

pulmonary embolus, or infarction), (2) oxygen dependence, (3) severe weight-bearing

pain, (4) other serious organ system disease, and (5) life expectancy of < 1 year. All

participants signed an informed consent to partake in the trial and all had approval from a

primary care physician [8]. Ninety-two individuals completed the clinical trial, 44 in the

intervention arm and 48 in the usual care arm. Specifically, only 64 of the 92 participants

were included in this three-month analysis because those walking > 0.8 m/s at baseline

were excluded. This report does not compare the intervention to the usual care groups,

but combines all participants walking < 0.8 m/s at baseline to allow for examination of

clinically meaningful changes in post-stroke gait speed.

Outcome Measures

The parent clinical trial included the Orpington Prognostic Scale to measures stroke

severity [212]. Disability outcomes measures included the Functional Independence

Measure (FIM) [213], the Barthel [214], the Lawton and Brody IADLs assessment [215],

and gait speed thresholds for community ambulation [10]. Quality of life measures

included subscales of the Stroke Impact Scale [216] and the Medical Outcomes Study SF

36 [217]. Results for outcome measures are found elsewhere [8]. Gait speed, activity, and

participation were the specific outcome measures used for this secondary analysis.

Gait velocity

Gait velocity was measured by the 10-Meter Walk, a valid and reliable measure for

gait velocity assessment in the elderly post-stroke population [218]. The 10-Meter Walk









consisted of two completed walks without rests in between and collected in

meters/second.

Specifically, the main outcome for this analysis was the proportion of participants

who demonstrated "success" by transitioning from one ambulation classification to the

next. Both baseline and final outcome measures were placed into the ambulation

classification previously developed by Perry et al.: < 0.4 = household ambulation, 0.4 -

0.8 = limited community ambulation, and > 0.8 = community ambulation [9]. Changes in

gait velocity were considered as successful walking recovery when participants shifted

from < 0.4 m/s to 0.4 0.8 m/s (household to limited community ambulation) or 0.4 0.8

m/s to > 0.8 m/s (limited community to community ambulation) [9]. A dichotomous

variable of "success" or "fail" was utilized for the analysis.

Activity and participation

Activity and participation were assessed with the Stroke Impact Scale (SIS), a

comprehensive and psychometrically robust stroke-specific outcome measure [216, 219].

The SIS was developed from the perspective of patients, caregivers, and health

professionals with stroke expertise. It has been demonstrated to be reliable, valid, and

sensitive to change related to stroke recovery. There are eight domains and 59 items in

version 3.0, specifically, the SIS ADL/IADL, mobility, participation, and SIS-16 physical

functioning components were used for this analysis [220]. Items such as food preparation,

bathing, toileting, shopping, and household tasks were assessed with the ADL/IADL

component. Mobility was assessed with items regarding loss of balance, transferring,

walking, and stair climbing. Participation items included work, social activities, quiet

recreation, family and friend roles, religious and spiritual activities, and helping others.









The SIS-16 is a validated short instrument used to assess physical functioning with ADL

and mobility items [221].

Statistical Analysis

All analyses were completed using SAS statistical software. Simple descriptive

statistics were used to describe demographics and outcomes scores for the entire sample.

Additional descriptive data delineated by success or failure of increasing to the next

walking classification was examined. Baseline characteristics of the 64 people who

completed the study with initial gait speed of < 0.8 m/s included demographics, stroke

characteristics, and baseline outcome measures. T-tests were utilized to determine

significant differences in activity and participation (SIS) between those who succeeded

and who failed to increase to the next walking classification at three months post-stroke.

Results

Baseline demographics for the 64 participants are presented in Table 3-2. The

average age of the sample was 71.03 (10.64). Those successful in increasing to the next

ambulation classification were significantly younger than those who failed (p = .0023).

The entire sample included 54.69% males and 78.13% were white. All other

demographic characteristics and data related to participation and retention of participants

specific to the Kansas City Stroke Registry are reported elsewhere [8].

Mean baseline gait speed was 0.50 (0.16) m/s for the entire sample, 0.51 (0.17) m/s

for those who succeeded and 0.49 (0.16) m/s for those who failed to increase to the next

ambulation classification (p = 0.689). At three-months, gait speed for the entire group

was 0.68 (0.24) m/s. As anticipated, a significant difference was detected for three month

gait velocity scores between those who succeeded (0.82 (0.25) m/s) and failed (0.56

(0.16) m/s) to proceed to the next ambulation classification (p < 0.0001).









Table 3-2. Baseline characteristics for participation with initial gait speed < 0.8 m/s
(success = advancing to a higher ambulation classification)


Success


Demographics
Sample Size
Age, Year
Male Sex, n (%)
Race (White), n (%)
Stroke Characteristics
Orpington Prognostic Score
NIH Stroke Score
Right Hemisphere (%)
Left Hemisphere (%)
Brain Stem/Other (%)
Stroke Type, Ischemic (%)
Baseline Measures
Barthel Index
Folstein MMSE
Geriatric Depression Scale
10 Meter-Walk, m/s at
Baseline


64
71.0 (10.64)
35 (55%)
50 (78%)

3.51 (0.84)
6.62(3.33)
34 (53%)
24 (38%)
4 (9%)
57 (89%)

40.16 (20.1)
26.45 (4.23)
4.61 (3.29)
0.50 (0.16)


29
66.72 (9.29)
16(46%)
22 (44%)

3.67 (0.89)
6.76(3.46)
15 (44%)
9 (38%)
3 (83%)
25 (44%)

40.17 (19.5)
26.31 (3.72)
4.59(3.61)
0.51 (0.17)


Fail


35
74.6 (10.48)
19 (54%)
28 (56%)

3.38 (0.78)
6.50 (3.27)
19(56%)
15(63%)
1 (17%)
32 (56%)

40.16(21)
26.57 (4.67)
4.63 (3.06)
0.49 (0.16)


Values are mean (SD) when appropriate

The proportion of participants who succeeded or failed to transition from one

ambulation classification to the next is documented in Table 3-3. The highest proportion

of participants who transitioned to the next classification had initial gait speed of less

than 0.4 m/s; 63% of the household ambulators increased to the limited community

ambulator classification. In contrast, only 38% of those initially considered a limited

community ambulator (0.4 0.8 m/s) advanced to the community ambulation

classification. In all, 45% of the sample was successful and 55% failed to increase to the

next ambulation classification at three months.

Three-month outcomes associated with gait velocity are presented for the entire

sample in Table 3-4. Age was significantly different between those who were successful

and who failed to transition to the next ambulation classification. Therefore age was

controlled for at the < 0.100 level, as it is common that adjustment variables are retained


p value


0.0023
0.9434
0.6902

0.176
0.763

0.1530

0.6920

0.998
0.804
0.960
0.689









in the model at a lower significance level than that of the main factors. Equal variance

was established for all values except for the SIS-16 measure for the entire group.

Therefore t-tests were deemed appropriate and equal (pooled) p-values were used except

for the SIS-16 with the Satteerthwaite unequal variance p-value used. After controlling

for age, there were significant differences in SIS measured mobility and participation

between those who succeeded and failed to advance to the next ambulation classification

(p < 0.05). SIS ADL/IADL approached significance at 0.0524. When controlling for age

and stratifying by baseline gait speed, those with initial gait velocity of < 0.4 m/s

demonstrated significant differences in SIS ADL/IADL, mobility, social participation,

and SIS-16 measures between those who succeeded and failed (p < 0.05) (Table 3-5). In

contrast, when age was controlled for and initial gait speed was between 0.4 m/s and 0.8

m/s, only participation scores were significantly different between those who succeeded

and those who failed to progress to the next ambulation classification.

Table 3-3. Proportions of success/fail for transitioning to next ambulation classification
between baseline and 3 months
Initial Gait Velocity in m/s All
Success Fail
Total n (%) < 0.4 (Household) 12 (63%) 7(37%)
0.4-0.8 (Limited Community) 17 (38%) 28 (62%)
_Total 29 (45%) 35 (55%)

Table 3-4. Three month outcomes for entire sample
Success Failure p value p value^
Sample Size 29 35
SIS ADL/IADL 77.8 (14.1) 69.6 (19.0) 0.0589 N/A
SIS Mobility 77.6 (2.2) 65.5 (16.1) 0.0015 0.0359A
SIS Participation 68.2 (8.6) 52.9 (20.6) 0.0031 N/A
SIS 16 81.3 (11.2) 71.6(16.5) 0.0076 0.0844A
^p-value after adjusting for age when age is significantly different at the < 0.100 level










Table 3-5. Three month outcomes stratified by gait speed
Success Failure p value p value^
< 0.4 m/s at Baseline
Sample Size 12 7
SIS ADL/IADL 75.5 (15.2) 51.4(12.5) .0026 N/A
SIS Mobility 77.1 (11.4) 50.5(10.9) <.0001 N/A
SIS Participation 66.1 (15.2) 42.9 (19.6) .0100 N/A
SIS 16 67.2 (12.5) 46.7 (9.8) <.0001 N/A
0.4 0.8 m/s at Baseline
Sample Size 17 28
SIS ADL/IADL 79.6 (13.5) 74.2 (17.7) .2891 N/A
SIS Mobility 77.9 (13.1) 69.3 (14.9) 0.0565 .2215^
SIS Participation 69.7 (21.0) 55.5 (20.5) .0308 N/A
SIS 16 81.8 (12.7) 67.6 (13.7) .1756 .0718^
^p-value after adjusting for age when age is significantly different at the < 0.100 level

Discussion

Gait speed is a valid and reliable assessment used frequently in elderly and post-

stroke research [9, 39, 40]. In the hopes of determining what is a clinically meaningful

change in gait speed, researchers have attempted to determine relationships between gait

speed and functional abilities [9, 10, 184]. Perry et al. and Lord et al. have previously

examined gait velocity classifications dependent on home and community ambulation in

the post-stroke population [9, 10]. Potter and colleagues demonstrated a relationship

between ADL performance and gait speed in an elderly population with various

diagnoses [184].

This secondary analysis is the first study to examine the association between actual

changes in post-stroke gait velocity and the reciprocal impact on performance of ADLs

and IADLs and social participation as measured by the SIS. Our results validate

ambulation classification in both research and clinical rehabilitation settings, and

specifically validates the prior classification developed by Perry et al. [9]. Additionally,

our results show that a clinically meaningful change in gait speed, as represented by an









increase to the next ambulation classification, was significantly associated with increased

activity and participation scoring, particularly for those with the slowest baseline gait

velocity.

Those who successfully transitioned to the next ambulation classification were

significantly younger then those who did not (p = 0.0023). When age was controlled for,

those with baseline gait speeds of < 0.4 m/s demonstrated the greatest gains in activity

and participation. Among those who walked less than 0.4 m/s, there were significant

differences in SIS ADL/IADL, mobility, participation, and SIS-16 scores found between

those who were successful and who failed to advance to the next ambulation

classification. This may be attributable to the fact that those with greater deficits had

more opportunity for improvement and there were less ceiling effects in the measures.

After age was controlled for in the less impaired walking group, there was

significant difference in participation, between those who did and did not successfully

progress to the next classification. SIS participation items include higher level home and

community activities. Increased gait velocity was clearly attributable to increased

abilities to complete higher level tasks at home and in the community. A significant

difference in age contributed to mobility and SIS-16 scores. After controlling for age, the

SIS-16 approached significance, but likely was related to the assessment of higher level

ADLs and mobility. The lack of other significant findings is probably due to the

participants' high degree of independence at baseline and subsequent ceiling effects of

the measures.

Stratifying by gait speed decreased the sample size, possibly decreasing the

detected differences between groups. Other post-stroke changes may have also impacted









ability to complete ADLs, IADLs, mobility, and social participation. The severity of

residual deficits is an additional component of post-stroke gait speed and activity and

participation; side of the lesion, medical complications, rehabilitation days, assistive

devices, caregiving, and overall support all play a role in performance of post-stroke

ADLs (including mobility) and IADLs and social participation.

Research competed by Potter et al. may provide some rationale for our specific

findings [184]. The authors noted that some participants demonstrated greater gait speed

but not greater ADL performance. They concluded that some had difficulties specific to

upper extremity ADL and IADL activities that were not reliant on gait. Therefore no

relationship between ADLs and gait speed existed. Additionally, all of their study

participants walking between 0.35 m/s and 0.55 m/s were independent in all ADLs. Our

average baseline gait velocity was 0.50 (0.16) m/s for the entire sample, therefore,

independence in ADLs would be expected for our participants, particularly for those

walking initially walking greater than 0.4 m/s.

An important strength of this study is that the included participants are derived

from a large parent study of community living stroke survivors. This is a clinically

significant group because even though they have returned home, they still have limited

ambulation and other stroke related deficits. Additionally, the assessors were blinded

regarding intervention or control placement and all assessments were standardized. There

are also limitations. Duncan et al. reports study limitations related to the intervention and

possible bias in self-report because the control group participants knew their treatment

assignment [8]. In future studies, we will assess the impact of post-stroke gait speed

changes using a continuous measure rather than ambulation classification.









Clinically meaningful changes in gait speed are important in rehabilitation clinics

and research. Rehabilitation goals often include increases in gait speed and endurance.

The results of this study indicate a significant impact of gait velocity on performance of

ADLs, IADLs, mobility, social participation, and SIS-16 scores making increased gait

speed an appropriate goal. These results are very relevant as they validate the ambulation

classification previously portrayed by Perry et al. [9] and represent a clinically

meaningful change in gait speed; encouraging the use of ambulation classification for

goal setting as it is related to overall increases in activity and participation. We have

demonstrated that a clinically meaningful change in gait speed is related to highly

significant improvement in all domains, particularly for social participation. Such

clinically meaningful gait speed changes may have a profound impact on overall quality

of life and life satisfaction as both have been negatively associated to restriction of

activity and participation [179, 180].














CHAPTER 4
FEAR OF FALLING AFTER STROKE

Introduction

Stroke is the primary cause of disability in the United States and is the third leading

cause of death in the country for those over 65 [2-4]. The American Heart Association

reports that stroke is a common neurological event occurring in 700,000 people a year

[159]. Those surviving a stroke are often left with sensory, cognitive, motor, and balance

impairments which negatively influence mobility and other activities of daily living

(ADLs) and instrumental activities of daily living (IADLs) [222-224]. Fall rates increase

due to post-stroke mobility deficits [78] and are considered the most common medical

complication after stroke [166]. The annual 30% [49] incidence of falls in the community

dwelling elderly population rises to 73% within the first six months post-stroke [79].

Those who fall post-stroke may be prone to developing fear of falling. The development

of fear of falling, with the cascading consequences of further mobility disability and

declines in activity and participation may be related to an overall decrease of

independence and quality of life [56, 170].

There is currently an abundance of research regarding falls after stroke and fear of

falling in the community dwelling elderly, but there is little specific to how people

describe the experience of fear of falling after stroke or how fear of falling develops

among this population. Fear of falling has been operationally defined for this study as "a

developed and lasting concern about falling related to a loss of confidence in balance

abilities and mobility and is often related to an avoidance of activities that he/she remains









capable of performing" [113, 140-143]. The incidence of fear of falling is still unclear

with researchers reporting fear of falling in the community dwelling elderly ranging from

29%-92% for those recently sustaining a fall and 12%-65% for those without a recent fall

[46, 70, 113, 115, 144-152]. Fear of falling incidence may rise after stroke due to

increased fall rates and declines in physical ability and mobility.

Fear of falling has been associated with declines in performance of ADLs and

IADLs, decreased participation, and community integration [43, 137, 143, 149, 151, 152,

189-192]. It has also been related to declines in mobility, stair climbing, vision, general

health status, depression, and poor life satisfaction, [10, 56, 113, 140, 147, 186], all

negatively influencing general well-being and life satisfaction [193]. In addition, 20% to

55% of those with fear of falling have reported activity restriction [42, 43, 113, 114, 143,

148, 186, 187, 225-230]. Activity restriction has been independently related to increased

health care utilization, social isolation, depression, and caregiver burden and decreases in

health, functional status, and independence; resulting in overall decline in quality of life

and life satisfaction [10, 43, 56, 113, 140, 143, 147, 149, 151, 152, 179, 180, 186, 189].

Activity restrictions related to functional deficits, falls, and fear of falling may result in

reduced levels of independence and increasing need for additional care in the home [4].

Such decreases in abilities may be associated with increased caregiver burden, strain, and

depression [4, 79, 154]. Informal caregivers of people who have fallen report decreased

social activity, increased stress, and increased burden [79, 154].

This study is a secondary analysis of existing qualitative and quantitative data

obtained from a larger study [11]. The objectives of this study were (1) characterize post-

stroke fear of falling as described by participants during the first six months following









discharge home; (2) explore the relationships between fear of falling and performance of

ADLs, IADLs, and depression; and (3) examine the relationship between fear of falling

and caregiver depression, burden, and coping.

Methods

Design

This study used both qualitative and quantitative methods to evaluate fear of falling

in a population of veterans discharged home post-stroke. Participants who discussed fear

of falling were identified in the sample enrolled in the larger study. Content analysis was

used to identify descriptors that characterize fear of falling across six months after

discharge home post acute stroke. Patton describes content analysis as the process of

identification, coding, and categorization of the primary patterns in qualitative data [231].

Quantitative data were obtained from standardized outcome measures collected from

stroke survivors and their caregivers at one and six months.

Sample

All veterans and caregivers included in this study met the inclusion criteria to

participate in the larger study. The larger study included a total of 132 participants, 42

(32%) of these participants were identified with fear of falling at one or six months and

were included in the sub-study. The inclusion criteria for veterans to be involved in the

larger study were: (1) member of one of three ethnic groups (Caucasian, African

American, or Puerto Rican Hispanic), (2) discharged directly home from an acute care

unit following a stroke, (3) a Mini Mental Status Exam (MMSE) of 18 or higher and able

to verbally communicate at discharge, (4) have a caregiver willing to participate, and (5)

sign a consent form or have the consent form signed by a proxy. Inclusion criteria for the

informal caregivers were: (1) family or friend who the stroke survivor identified as a









primary caregiver, (2) able to communicate verbally, (3) willing to participate and sign a

consent form. Exclusion criteria for both veterans and caregivers was the inability to

communicate or unwillingness to participate. Inclusion criteria for this sub study were:

(1) male; (2) described some aspect of fear of falling during the interviews at one or six

months after discharge home. Each participant gave informed consent prior to

participation in the larger study through methods approved by the University of Florida

(UF) Health Science Center Intuitional Review Board (IRB) and the Veterans' Affairs

Subcommittee on Clinical Investigations (VA SCI). This secondary analysis was

approved by the UF IRB and VA SCI as an exempt study using existing data.

Data Collection

Data for the larger study were obtained to develop stroke recovery trajectories for

stroke survivors and their caregivers after discharge home following acute stroke for

three ethnic groups: African American, White, and Puerto Rican Hispanic. The larger

study is a longitudinal multi-site cohort study that includes qualitative and quantitative

data derived from participant interviews and responses to questionnaires. Demographics

were collected and baseline assessments were completed at the time of discharge. The

study was designed so that each stroke survivor was interviewed for approximately 50

minutes. Qualitative data were obtained during at home, in-depth, semi-structured

interviews with the stroke survivors at one and six months. Interviews were completed

with the stroke survivor first; probing questions were presented to capture stroke related

disability and recovery. Interviews were tape recorded, transcribed verbatim, verified,

and entered into QSR N6, a software application designed to assist with qualitative data

analysis [232].









Fear of falling was not part of the formal assessments. Participants instead

spontaneously talked about fear of falling as an important part of managing their daily

lives and their experiences post stroke. Transcriptions of all interviews at one and six

months for all 132 participants in the larger study were transferred into a word processing

document to enable identification of those who discussed fear of falling and concerns

about falls, balance, and stability.

Identification of participants with a fear of falling was conducted via a semantic

content analysis of the qualitative interviews. During reviews of interviews, the following

word list was developed from the text. These words were then used to search all word

documents: fall, fell, balance, trip, stumble, wobble, wabbly, slip, dizzy, dizziness, walk,

walking, walker, cane, crutches, crutch, fear, fearful, afraid, scared, worry, worried.

Participants were identified for inclusion in this sub study when they specifically

stated they were fearful or used statements/words regarding concern, confidence, or fear

related to falling, balance, or mobility. A qualitative research specialist validated this

review of qualitative data and selection of participants with fear of falling. A second

dataset was created that included all one and six-month interviews for participants

identified as fearful. This dataset of interviews was coded to identify themes related to

the experience of fear of falling.

The interviews for those identified as fearful of falling were coded in N-6 to

identify themes derived from the interviews. All coding was validated by a rehabilitation

health care professional. Characterizations, quotes from participants, and recorded

observations were used to identify three main recurrent themes that were refined during

analyses. The three initial coding themes were "physical", "psychosocial", and









"strategies for managing fear of falling". Each code included sub-codes that have been

listed in the coding structure found in Table 4-1. Content analysis was completed to

identify phrases and sentences under this coding structure. A phrase or sentence could be

coded under more than one primary or secondary theme.

Table 4-1. Coding structure for qualitative interviews
Primary Theme Secondary Themes
Falls as a Physical Paralysis/hemiplegia
Event Fell at time of stroke
Balance/stability
Dizziness
Decreased participation
Injury (such as hip fracture or head injury)
Talk about falls (stumble, trip, wabble, etc)
Fearing Falls Fear, afraid, concern
Caregiver afraid will fall
Afraid of injury
Strategies for Walker/cane/WC/wall/other
Managing Fear of Relies on others
Falling Being careful


In addition to the qualitative interviews, stroke survivors completed standardized

measures to assess activity performance of ADLs and IADLs and depression. Caregivers

also completed standardized measures of depression and caregiver burden. Most often,

caregivers and stroke survivors were not interviewed with each other in the room.

Outcome Measures

Demographic data were collected at baseline for each stroke survivor and caregiver

included in the qualitative and quantitative analyses. Stroke survivor demographic data

included age, gender, race/ethnicity, employment status, income, and comorbidities

recorded in their medical records. Baseline standardized assessments included the

Functional Independence Measure (FIM) to assess functional status and the Mini Mental

Status Exam (MMSE) [233, 234] to measure cognitive status.









Functional status

The FIM was utilized to measure functional status at baseline and was repeated at

one and six months. The FIM is the most widely used method of assessing functional

ability in persons with disability. Reliability and validity of the FIM have been

established [235, 236]. The FIM consists of 18-items and responses are scored on a 7-

level ordinal scale with six subscales: self-care, sphincter control, transfer capability,

locomotion, communication, and social cognition [235]. The FIM was utilized as a

measure of severity of disability and functional status change over time.

The Frenchay Activities Index (FAI) was used to measure IADLs. The FAI is a

valid and reliable measure used to better assess normal living activities that occur among

community dwelling adults [237]. The FAI is composed of 15 items and three major

subscales: domestic chores, leisure/work, and outdoor activities. Scores range from 0

(inactive) to 45 (very active). Wilkinson et al. [224] defined intact IADL function with an

FAI score of over 15.

Cognitive status

The MMSE, a standardized test used to evaluate basic cognitive abilities, assessed

mild to moderate cognitive impairment for the stroke survivors [233, 234].

Depression

Stroke survivor and caregiver depression was assessed using the Geriatric

Depression Scale (GDS). The GDS has been used with the elderly population and those

who are cognitively impaired. It is a 30-item scale with dichotomous variables (yes, no).

Reliability, internal consistency, test-retest validity, and concurrent validity have all been

established for the GDS [238]. Higher scores indicate increased levels of depression.









Caregiver demographics, burden, and coping

Demographic data on caregivers included age, gender, race/ethnicity, education,

and relationship to patient. Caregiver burden was measured using the Sense of

Competence Questionnaire (SCQ). The SCQ contains 27 items with three different

subscales: satisfaction with the care recipient, satisfaction with one's own performance as

a caregiver, and consequences of involvement in care for the personal life of the

caregiver. Each item is scored using a four point Likert type scale; burden is determined

by summing the three scales. Higher scoring indicates higher levels of burden

experienced by the caregiver. The three subscales and the aggregate burden score have all

been demonstrated to be both valid and reliable for use with stroke survivors.

The Sense of Coherence (SOC) questionnaire is a global measure of the ability to

mobilize adaptive coping resources and is used as a measure of coping ability. The SOC

is a 13-item, self-report scale which has been utilized in over 20 countries [239, 240].

The items on the scale are on a Likert-type scale, and possible scores on the SOC range

from 13-91, with higher scores indicating better ability to cope. This scale has

demonstrated strong internal validity, reliability, and test-retest correlations. Specifically,

Cronbach's alpha (internal consistency) has ranged from 0.74 to 0.91 and the test-retest

correlations for 12-month follow-ups ranged between 0.54 and 0.78.

Analysis of Quantitative Data

Quantitative data were used to describe the sample and to explore outcome

measures. Descriptive statistics were used to describe participant demographic

characteristics and performance of ADLs and IADLs, depression, and cognition for those

who did and did not discuss fear of falling. A chi-square was completed to examine the

proportions of participants who reported fear of falling at one month and six months post-









stroke. Additional descriptive statistics for caregivers delineated by stroke survivor fear

of falling status are included.

Results

Description of Sample

The larger study enrolled 132 participants. Overall, 42 (32%) participants discussed

fear of falling at either one or six months and 90 (68%) did not. See Table 4-2 for

demographics of those with and without fear of falling.

Table 4-2. Baseline data for those with and without fear of falling (FoF)
Measures No FoF During 6 Months FoF During 6 Months
n 90 42
Age 65.62 (9.68) 67.50 (11.93)
White 29 (32%) 19 (45%)
AA 34(38%) 16(38%)
PR Hispanic 27 (30%) 7 (17%)
Values are mean (SD) when appropriate

A total of 33 (25%) participants were identified as fearful at one month. Nine

additional individuals described fear of falling at month six (7%). Thirteen participants

(10%) discussed fear of falling at both one and six months. Therefore, 20 participants

(61%) who reported fear of falling at one month did not discuss fearful at six months. In

total, 22 participants (17%) described fear of falling at month six (13 were fearful at one

and six months plus 9 new participants discussed fear at six months). See Table 4-3 for

demographics and baseline data for participants with fear at one and six months.

Relationships Between Fear of falling, Functional Status, and Depression

To explore the relationship between fear of falling, functional status, and

depression, we used descriptive statistics to provide a profile for stroke survivors with

fear of falling using data on ADLs, IADLs, depression, and cognition. See Table 4-4 for

the mean scores and standard deviations of the FIM, FAI, MMSE, and GDS scores for









the 42 unique individuals with fear of falling and the 90 who did not discuss fear.

Participants demonstrated consistent increases in FIM and FAI scores from baseline and

one month to six months scores regardless of fear of falling status. T-tests were

completed to assess differences between those with and without fear of falling. There

were no statistical differences for any assessment scores between those who did and did

not discuss fear of falling. The participants with fear of falling are slightly older and

demonstrate a somewhat lower functional status. Depression and cognition scores for

those who did and did not discuss fear of falling did not appear to differ.

Table 4-3. Baseline/discharge data for those discussing fear of falling at one and six
months
Month 1 FoF Month 6 FoF
33 FoF at 9 New FoF at 6 13 FoF at 1 and 22 Total FoF at 6
Month 1 Months 6 Months Months (9 + 13)
n 33 (25%) 9(7%) 13 (10%) 22(17%)
Age 64.58 (10.42) 78.22 (11.45) 68.08 (8.34) 72.23 (10.76)
White 15(45%) 4 (44%) 6 (46%) 10(45%)
AA 11(33%) 5 (56%) 3 (23%) 8 (36%)
PR Hispanic 7 (21%) 0 (0%) 4 (31%) 4 (18%)
MMSE 26.52 (2.40) 25.44 (3.97) 26.92 (2.90) 26.65 (3.20)
FIM Motor 73.10 (11.89) 74.56 (11.26) 74.69 (12.04) 74.63 (11.45)
FIM Cog 31.18(3.25) 31.22 (3.47) 31.84(3.34) 31.59(3.32)
FIM Total 104.27 (14.20) 105.78 (11.64) 106.54 (2.9) 106.23 (13.17)
(AA = African American, PR = Puerto Rican)

In addition, we examined scoring of individual FAI and FIM items specific to

activities that may be directly affected by fear of falling. Specifically we reported scoring

for "social occasions" and "walking outside for > 15 minutes" on the FAI and the

"walk/wheelchair" and "stairs" items from the FIM. See Table 4-5 for specific FAI and

FIM items for those who did and did not discuss fear of falling. Findings indicate that

those with fear of falling scored somewhat lower on all FIM and FAI individual items at

all assessment times. T-tests compared differences and only the FIM "stairs" item was









statistically significant different between those with and without fear of falling. Such a

result would not be uncommon in an elderly population, and those post-stroke would be

assumed to have increased difficulty with stair climbing. Changes in IADLs were

reflected in the qualitative interviews. Some participants talked about falls at home, often

in the bathroom, while performing basic ADLs. However, more often participants

commented on falls and fear of falling during higher-level activities, such as walking

around a store, community outings such as church or social gatherings, and physical

activities such as stair climbing. Thus IADLs and stair climbing were more likely

impacted by fear of falling in this higher functioning post-stroke group of participants.

These patterns of decreased performance in ADLs and IADLs for those with post-stroke

fear of falling warrant future research to better understand the impact on activity,

participation, and general quality of life.

Table 4-4. Baseline/discharge data and outcome measures for those with and without fear
of falling
Measures No FoF FoF During 6 months
n 90 42
Age 65.62 (9.68) 67.50 (11.93)
Baseline
FIM motor 75.71 (17.40) 73.40 (11.64)
FIM cognition 31.14 (4.18) 31.19 (3.26)
FIM total 106.86 (20.47) 104.60 (13.57)
MMSE 26.76 (3.35) 26.29 (2.79)
Month 1
FIM motor 80.46 (15.59) 78.86 (11.75)
FIM cognition 32.27 (3.47) 31.19 (3.85)
FIM total 112.73 (17.66) 110.05 (13.54)
FAI 30.54 (10.44) 27.26 (10.58)
MMSE 26.60 (3.05) 26.76 (2.54)
GDS 8.84 (6.59) 9.33 (6.76)
Month 6
FIM motor 82.84 (13.54) 82.69 (8.31)
FIM cognition 32.45 (3.72) 32.33 (2.95)
FIM total 115.30 (15.59) 115.03 (9.83)
FAI 33.13 (11.29) 31.50(11.40)









Table 4-4. Continued table
No FoF FoF During 6 months
MMSE 27.17 (3.82) 26.53 (3.18)
GDS 8.76 (6.92) 9.03 (5.98)
Of the 33 participants who discussed fear of falling at month one, 13 (39%)

continued to demonstrate fear of falling at month six. See Table 4-6 for frequency counts.

A chi-square test was calculated examining the proportions of participants who were

identified as fearful of falling at month 1 and who continued to be fearful at month 6. A

significant interaction was found (X2, p< .05), and those with fear of falling at month one

were likely to demonstrate fear of falling at month six, see Table 4-7.

Table 4-5. Scoring of FAI and FIM items for those with and without fear of falling
Measures No FoF FoF During 6 months
n 90 42
Baseline
FIM, walk/wheelchair 5.78 (1.44) 5.48 (1.40)
FIM, stairs 4.41 (2.34) 3.74 (2.30)
Month 1
FAI, social occasions 2.50 (1.32) 2.26 (1.27)
FAI, walking outside 2.90 (1.38) 2.60 (1.38)
FIM, walk/wheelchair 6.17 (1.30) 5.76 (1.19)
FIM, stairs 5.50 (1.87) 4.64 (2.08) *
Month 6
FAI, social occasions 2.84 (1.28) 2.78 (1.20)
FAI, walking outside 2.97 (1.31) 2.61 (1.44)
FIM, walk/wheelchair 6.39 (1.16) 6.08 (1.16)
FIM, stairs 5.88 (1.75) 4.97 (1.95) *
* Statistically significant at the < 0.05 level

Table 4-6. Frequency counts of fear of falling at one and six months
FoF at 6 Months Total
No FoF FoF Missing
FoF at Month 1 No FoF 90 9 99
FoF 16 13 4 33
Total 106 22 4 132

Table 4-7. Proportions of those with and without fear of falling and chi square
Month 1 Month 6 X2


Fear of Falling 25% 17%
No Fear of Falling 75% 83%


.000









We also examined the relationship between fear of falling and caregiver depression,

burden, and coping, see Table 4-8. Caregiver results are delineated by stroke survivor

fear of falling status. There were no significant differences in caregiver scoring in

depression, burden or coping skills between those providing care for those with and

without fear of falling (p > 0.05). However, in the interviews, it was common for

caregivers to comment on fears related to stroke survivor falls and injury. Additionally,

many stroke survivors indicated dependence on caregivers as a strategy to prevent falls.

Table 4-8. Comparison of caregivers for participants with and without fear of falling
Measures No FoF FoF During 6 months
n 90 42
Caregiver Age 59.80 (14.10) 59.38 (11.83)
Month 1
GDS 6.62 (6.17) 6.97 (5.65)
SCQ 51.64 (10.02) 50.08 (12.57)
SOC 71.42 (13.37) 71.13 (16.65)
Month 6
GDS 5.99 (5.57) 6.38 (5.63)
SCQ 51.89 (11.76) 52.44 (11.99)
SOC 70.54 (13.40) 71.53 (13.69)

The Experience of Fear of Falling Post-Stroke

Qualitative findings are described in this section. Initially, three major theme

headings of "physical", "psychosocial", and "strategy" were used for the coding of the

qualitative interviews. However, after a review of the qualitative interview data and

content analysis, it became evident that the development of fear of falling is a process,

one that often impacts everyday life. Therefore, we present the characterization of fear of

falling as the process that reflects the way stroke survivors experience fear of falling in

their everyday lives. Data indicated that the beginning of the process was often the first

sustained fall that usually occurred at the time of the stroke. Participants discussed

themes related to: bodily changes that influenced falls and fear of falling, experiences









related to a pervasive fear of fall and injury, and the impact of fear of falling on activity

and everyday life. The unpredictability of falls and the resultant general acceptance of

fear became evident, making strategies to manage falls and fear of falling necessary.

Each of these themes are described below. See Table 4-9 for original content analysis

frequencies derived from 33 month one interviews and 22 from month 6 interviews.

Table 4-9. Content analysis frequencies (derived from 55 qualitative interviews)
Primary theme Secondary Themes Frequency
Falls as a Paralysis/hemiplegia 15 27%
Physical Event Fell at time of stroke 22 40%
Balance/stability 21 38%
Dizziness 17 31%
Decreased participation 14 25%
Injury (such as hip fracture or head injury) 6 11%
Talk about falls (stumble, trip, wabble, etc) 45 82%
Total from 55 interviews 140 occurrences
Fearing Falls Fear, afraid, concern 32 58%
Caregiver afraid will fall 16 29%
Afraid of injury 6 11%
Total from 55 interviews 108 occurrences
Strategies for Walker/cane/WC/wall/other 35 63%
Managing Fear Relies on others 9 17%
of Falling Being careful 27 49%
Total from 55 interviews 152 occurrences

Onset of falling with the stroke event

Falling at the time of a stroke is a common experience and maybe a harbinger of

development of fear of falling. For some, having a fall signaled a possible second stroke,

thus fear of falling and fear of another stroke became intertwined. Others discussed the

fall at the time of the stroke and the experience of laying on the floor without someone to

help them. Fear associated with a possible fall continued as individuals were concerned

about falling in the future and being left on the floor for substantial periods of time. One

participant stated "Yes, I fell. It was horrible; I lost control of my left arm, and my hand,









my left foot. They failed me and that's why I fell." Others said "When I had the stroke, I

was, I couldn't walk. I had to crawl and if I tried to stand up at all my legs and things, just

like that (unintelligible), sit down quick or you would fall over" and "Well, when I fell, I

knew I had a stroke and I was in such a bad shape. I was sweatin', the worst kind of

sweat and I asked the Lord."

Some stroke survivors who fell at the time of their stroke were living with the fear

of another stroke and of future falls. One participant commented, "I was scared of falling,

you know, uh it's sorta like it was the other stroke, you know?" These participants

equated the two and feared both. They realized a future stroke may further limit their

abilities and independence. However, the fear they live with daily may limit activity

performance and in itself cause increased dependence. These early experiences of falling

with stroke onset represent the early stages of development of fear of falling.

Experiencing the changed body

Another part of the process of developing fear of falling is related to experiencing

the changed body. The residual motor deficits related to mobility were of great concern to

many participants. Changes in movement and ability of the lower extremities were

frequently described. Individuals discussed not being able to move the same as before the

stroke, and how this negatively impacts mobility, adding to the fear of falling. For

example, participants made several statements about fearing their legs would no longer

function properly. Some said, "My legs give out real fast", "I fear, I fear a little that my

legs don't fail me", and "No, that's what I, I mean, well, as I told you before, you always

worry about a leg failure or that, right?" Others stated, "Oh, am I tired. I'm tired. Legs

just bow, buckle underneath me", "I'll be walking and all of a sudden I'm making love to

the pavement", and "Let's see, after I walk so long (long pause) the feeling that any time









now, the hip and leg are gonna give out and I'm gonna fall, so I watch where I walk so

that if I would fall, I wouldn't fall into something too expensive (laughs)."

Bodily changes were also related to the loss of balance, stability, and strength. For

example, one man stated, "Uh, the only problems I can think of I'm having now is

balance... around me I have to hold onto things, so it's a balance problem and I'm,

sometime I'm tipping and leaning and, prone to fall down." Many talked freely about

paralysis and hemiplegia, or general changes to their body, most often impacting balance

and strength. Another commented, "Well, weak in the knees still weak, have to walk

more slowly and seems like sometimes I get a little wobbly cause I'm so weak and I

haven't got all my strength back yet." Interestingly, some participants discussed concerns

related to their balance, but did not specifically discuss falls or fear of falling. For

instance, one man stated, "The only thing that concerns me is my balance, sometimes I

lose my balance a little bit, that's about it, nothing else because the balance, it isn't all

right." This may be important when utilizing fear of falling assessments, as participants

may worry about balance, but not connect the concern to fear of future falls.

Participants also discussed dizziness as a common aspect of the changed body. For

many, dizziness became a part of everyday life, making falls and fear of falling very

common. When feeling dizzy, participants would discuss the need to curb walking or

other activities and their need for assistance to maintain their balance and prevent a fall.

As an example, one man stated "I get dizzy and I start falling down", and others stated "I

am insecure when I walk around the house, because I get dizzy, and I start falling face

down. My nervous system doesn't help me ... and it's not the same" or "Helped my wife









in a lot of things ... but now I can't, because now ... now I get dizzy and I start falling

face down, I can't I'm not stable, I don't feel self-secured."

The participants who experienced post-stroke bodily changes often developed

unpredictable episodes of imbalance, instability, and dizziness. These changes were often

related to hemiplegia, paralysis, and other post-stroke bodily changes and were reflected

in their discussions of insecurity in mobility and subsequent falls and fear of falling.

A pervasive fear of the unpredictable

Participants often described a pervasive sense of fear of falling. Some specifically

talked about being afraid of a fall in the future. When the interviewer asked "What are

your greatest concerns about your body now?" a participant stated "Fear of falling ... I

think that's most concern of everybody is falls." Others commented that "My greatest

concern, that I don't fall, that I don't have another stroke" and "That is my fear, well, that

I could fall. That is what, what they look for, that I don't fall. Because in order to get up

afterwards is hell." Another stated "I fear a little that my legs ... that my legs don't fail

me" and a different man said "One feels afraid of falling and even dying because I can

get hit by something. I fell and almost hit my head, and thank God, I hit my butt instead."

Some participants avoided the use the words 'afraid' or 'fearful' in relation to falls.

Instead, individuals often talked about having a concern about falls, balance, or safety.

One standard interview question asked participants about their concerns post-stroke,

many discussed issues related to balance, stability, dizziness, falls, safety, and walking.

Some stated, "Trouble with balance, but I'm not about to fall" or "The only thing that

concerns me is the balance, sometimes I lose my balance a little bit but that's about it,

nothing else."









Still others talked about fear of falling and not feeling safe. Safety therefore became

an issue for participants while at home and in the community. One man said, "I don't feel

safe because the people there run around. And I don't feel safe because I sit in a corer,

and I tell you, they can trip you over." and another stated "I didn't feel safe 'cause I

didn't know if I was goin' to fall or what."

Participants characterizing fear of falling often talked about the fear of sustaining

future fall related injuries. Some made the following comments: "Ummm ... I worry

because there have been times where I have tripped and nailed myself" and "I'm afraid

to. I'll lose my balance. That's a long ways down. The fall wouldn't hurt you, it's just the

sudden stop (laughs) ... That ground's hard. Like I say that fall ain't gonna hurt ya."

Of most concern were hip fractures and head injuries. For example, some stated,

"Cause once you fall, could break a hip" and "I think it's falling like it it's it's falling, all

the time that's your worst fear, it's falling and you might hurt or break a leg, or or or or

you might uhh break a hip or something, I think you're more conscious of it yeah."

Participants described genuine concern about being hurt after sustaining a fall and the

subsequent impact on function, one commented, "Uh huh, it worries me; I can fall and

hurt myself bad, or hit my head and make it worse than it is."

Those who discussed a fear of falling tended to discuss fears and concerns related

to falls, future falls, and safety issues. While many participants specifically and openly

discussed fear of falling, many others only admitted to concerns about balance and

stability, not addressing actual fear. Those who communicated fears about future falls

were also likely to discuss fear of future injuries. For these individuals, the fear of falling,

and the prevention of falls often became a part of everyday life.









Falls as an everyday life experience

Participants discussed how falls became a frequent event and a common concern,

often part of every day life. For example, one man said, "Sometimes I fall down, but I'm

used to that now" For some, it seems that falls and fear of falling became all consuming.

Regardless of the frequency of falls, fear of falling became a constant worry for some.

Falls as a common occurrence were expressed in the following statements: "I always fall

on the stairs" and "I'd make about four steps and I fall down" or "I worried about those

steps out there every time I fall it's been on those steps"

Some participants were concerned they would fall while out in the community and

they addressed the embarrassment of a public fall. One individual commented, "Yeah. Uh

huh. Do something that I find difficult to do, is not be embarrassed when you stumble and

watch when you're going somewhere." They were also concerned about how they looked

while walking around and seemed to be worried about the stigma related to falls and

decreased mobility. One man discussed the following situation: "What worries me is that

I had the experience that I fell down, I fell down on a street, someone called 911 and they

picked me up because when I fell I had lost my conscience, because I have unbalance in

my legs, I fall down."

Strategies for managing fear of falling

Because fear of falling became an all consuming issue for some participants, talk

about strategies for the prevention of future falls and management of fear of falling was

common. Many participants discussed limiting everyday life activities, such as ADLs and

IADLs at home and out in the community. One participant said, "You know, I was, I, I'm

generally, well, no I wasn't a real religious fella or anything like that but I did go to

church occasionally with my wife on Sunday, y'know. But uh, I, in fact the last time I









went to church with her I lost my complete balance as we were walking' out o'church,

because of the fall problem I have, and I almost knocked an old lady down. So that was a

concern for me and I wouldn't go back to church. Y'know, since the stroke I've lost

confidence" Another man commented, "Well, well, like I tell you, I stutter, I stutter

more, I wobble and uh that's why I don't, I don't get out in the streets to much, I could, I

have enough energy to go walk and more but I don't" Others discussed limiting higher

level skills, for example, "Well, now I can't (laughing), now it's impossible for me to

climb a ladder. Now I can't do it because I can't get up the ladder (unintelligible), I fall."

Participants also discussed the use of assistive devices such as walkers, canes, and

wheel chairs to reduce falls and feel secure in their environment. As an example, one man

said, "Yeah, I use a cane ... ahhh ... just to ... for protection like in, so I don't fall.

Because, you know, somewhere along the line there was times when my leg felt like it

was going to give out, but it didn't." and another stated, "I keep my cane because I

never know whether one of my legs is gonna decide to give out, so I keep my cane with

me." Other individuals expressed their use of assistive devices with the following

quotations, "Like that cane. Once I, I got it set right by the door over there, 'cause I go

out that door, I'll grab that cane, keep my balance ... And when I get out the door I got

things I can hang onto but once I get away from it I can't. I gotta have that cane. So I

gotta have that cane handy" or "Mainly the only reason I use the walker is for balance."

Interestingly, some even used the furniture or walls as an alternative to assistive devices.

One participant stated, "I feel safe, like I say, the only thing that I am, ahh, really

concerned about in here is after I walk so long that my hip starts giving away and then I

might fall into somebody of up against something and break something, so I watch that.









If I have a banister, I feel, great, hold on to the banister," and an interviewer commented,

"At times, it was noted that he was unsteady on his feet and often used the furniture for

balance."

Participants also discussed where they used assistive device. Some commented on

using a device at the store or out in the community, but not at home. For example, "Yeah,

when I go in stores I carry my cane, and if I didn't I'd probably fall" and another, "I got a

walker in there that I use whenever I go up the hospital. Here in the house I really don't, I

use a cane occasionally, but you have the wall here, everything's close, see, y'know."

Others indicated reliance on others as an additional strategy utilized to reduce falls

and manage fear of falling. One man stated, "I was setting' there goin' to the left like that,

kept slidin' to the left, cause the left side's gone. It was in these here foldin' chairs. She

pulls hers right up side of me, leans up there before so I can lean against her, instead of

falling' out of the chair ... Yeah, she's sitting' on the left and she slid her chair right up

against mine, put her shoulder there where I can lean against her, keep me a slidin' out,

falling' out of this chair." Many discussed dependence on their caregivers or others for the

maintenance of balance and the prevention of falls. A participant referred to his caregiver

and said, "Oh, sure, grabbin' my hand, helping' me help straight up and down, keeping' me

from falling she'll walk along side of me every now and then, and, when I need her, you

can tell you know why I'm a little more off balance." Others commented, "Well my

beliefs are that I never will walk alone, I can't be alone at any time", "I'm afraid of

falling when she's not here. I may hurt myself ... Yeah, it makes a difference when she

is here, I walk around and all that." and "Well, yes, he helps me get ready to go to the









bathroom, because sometimes I fall." One stated, ... I want someone beside me to tell

me things and ... At least to prevent me from falling because the last time I fell."

Some caregivers were in the room during the interview and interjected information

about falls and their fear of the stroke survivor falling in the future. Caregivers made the

following comments, "I'm afraid he's going to fall again", "We don't want him to fall",

and "Cause I'm afraid he'll fall and wouldn't be able to get up." Stroke survivors were

aware of their caregiver's surveillance of possible falls and attempts to decrease falls

incidence. For instance, one stroke survivor commented, "My wife keeps attention when

I walk, if I fall or something", and another said, "She was watching me, to see if I was

gonna fall." Still others stated, "Well, they help me to stand up and walk, right? And they

fear that I might fall, right?" Another said, "During the day my wife is here with me in

the house, here .. paying attention to everything I do, too. If go walk over there she's

paying attention that I don't fall or anything."

A general tool for the management of fear of falling and a reduction of future falls

was simply to "be careful" or "cautious". For example, one man said, "I don't know how

to describe it but I think that you, uhh, are more cautious and more careful like, uhh,

umm, in you, when you in bathrooms, if you're in the shower and, uhh, you have to use,

sit down in the chair so that you won't fall." Being "careful" while performing specific

mobility and other everyday activities was commonly addressed. Being cautious was

expressed in the following excerpts: "It's about the same, only thing you do is um, make

sure you don't trip over nothing' an' try your best to sit some place where you don't fall

off of nothing and "I walk slower. I take my time now ... but I, uh, try my best to avoid

tripping. I just slow down." Another said, "Yeah, I, uh, had to be very careful 'cause, uh,









I first come home, home from the hospital, I'd try to get outta' my chair and I fell a

couple a' times." One man said, "I have to be careful when I walk. I might fall."

Many different strategies were utilized for the prevention of falls and the

management of the complexity of fear of falling. Participants discussed use of assistive

devices, reliance on others, and simply being cognizant of their own personal fall risks.

To summarize, quantitative and qualitative data were analyzed to explore the

characterization of fear of falling post-stroke. The main themes derived from the data

conceptualize the process of developing fear of falling, often beginning at the time of the

stroke or initial fall and continuing as individuals live with fear of falling as part of their

daily lives and learn to manage their new bodies and strategize against future falls and

fear of falling.

Discussion

To our knowledge, this is the first study examining the development of fear of

falling in the post-stroke population. It is also the first qualitative studies on fear of

falling in the elderly. Characterization of post-stroke fear of falling has been derived from

analyses of the qualitative interviews and descriptions of participants using standardized

assessment scores. It is evident that falls and fear of falling are difficulties faced by many

of those who have sustained a stroke, often on a daily basis. Our findings are based on

secondary analyses and indicate that further study of the development of post-stroke fear

of falling and its management at home and in the community is warranted.

Many of the participants discussed falls and fear of falling during the first one to

six months post stroke. The experience of falls is supported by research completed by

Forster and Young who reported a 73% incidence of falls in the first six months post-

stroke [79]. Our reports of fear of falling were less than expected when compared to the









community elderly population. Researchers have indicated fear of falling in 29%-92% of

those recently sustaining a fall and 12%-65% of those without a recent fall [46, 70, 113,

115, 144-152]. In our study, 25% of participants (33 of 133) in month one and 32%

(42/132) of all participants described fear during the first six months post stroke.

The lower fear of falling incidence may be related to the high functioning of our

participants. At discharge, the mean FIM motor score for all participants, regardless of

fear of falling, was 74.98 (15.79) with a range of 13 to 91, and 46% of all participants

scored over 80 (maximum score is 91). This increased to 69% at month one and 74% at

month six, indicating a high functioning group of post-stroke participants.

Incidence may have been impacted by an all male veteran sample. Women are

more likely to report a fear of falling [43, 144, 148, 155, 156] and men may underreport

fear due to a perceived negative stigma related to their fears. Fear of falling may be

underreported because those with the greatest fear may not partake in research [155, 241]

and others may fear institutionalization [143, 150].

Characterization of Fear of Falling

Participants discussed the characterization of fear of falling. Through review and

analysis of the interviews and exploration of post-stroke fear of falling functional status,

we have determined five important factors to include in the characterization:

(1) The time of the initial fall: participants often discussed a first fall coinciding

with their stroke. Participants realized they were at risk for both future falls and strokes

and indicated fear of decreased abilities and subsequent dependence on others. This

provides a preliminary exploration of the timing and development of fear of falling after

stroke. Timing may be related to the impact fear has on everyday life and important when

evaluating assessments and the efficacy of interventions to reduce future falls and









management of fear of falling. In preparation for discharge, clinicians need to talk with

patients about fear of falling and how they will manage safely at home.

(2) Post-stroke related changes in the body: resultant declines in balance, stability,

strength, and dizziness due to hemiplegia and paralysis were commonly discussed. Yates

and colleagues previously determined increased fall risks related to post-stroke motor

impairments [78]. This sample of post-stroke participants discussed decreased mobility

due to the stroke and how it related to increased risk of future falls and fear of falling.

Rehabilitation clinicians and researchers need to develop interventions to support

mobility and safety among those patients with post-stroke fear of falling.

(3) Pervasive fear of future falls: many naturally discussed fear of falling, falls, and

balance issues when discussing post-stroke concerns and barriers. In contrast, others

discussed concern or trouble regarding balance, stability, strength, or their "legs giving

out" but did not admit to actual fear. Perhaps the stigma of "being afraid" was

overwhelming, especially for an all male veteran population. Researchers have

demonstrated increased likelihood of female fear of falling, perhaps our all male veteran

population were embarrassed to admit such fears [43, 144, 148, 155, 156]. The difference

in levels of fear may impact future research when assessing fear of falling evaluations

and preventative interventions. Participants not admitting to being fearful may require

different interventions to manage issues related to fear of falling and future falls.

(4) Every day fear of falling: it became evident that different levels of fear of

falling existed within this population. There is an apparent continuum of fear of falling in

this post-stroke population. It ranges from a healthy sense of fear to an overwhelming, all

encompassing, everyday, obtrusive fear that is reflected in a "constant awareness" of falls









risks and reported changes in activity and participation. The development of fear of

falling may have great impact on every day life, for some, it becomes all-consuming.

Assessing fear of falling and openly discussing it with patients and their caregivers may

help them manage more efficiently after discharge.

(5) Strategies for the management of fear of falling: participants discussed

individual techniques to manage falls and fear of falling. Many discussed restricting or

modifying performance of ADLs, IADLs, and social participation due to fear. Activity

restriction is common in those with fear of falling in the community dwelling elderly [43,

113, 114, 143, 148, 186, 187, 225-230]. Those with fear of falling related activity

restrictions may become increasingly dependent on caregivers. This may impact stroke

caregiver burden and depression. The use of assistive devices such as walkers, canes, and

wheel chairs was also common. Others discussed being careful or cautious to manage

falls and fear of falling. Overall, the development of strategies indicate that a certain,

normal, healthy fear may reduce future falls. Because fall risks are multidimensional [52,

65-67], the independent use of multiple strategies represents the need for

multidimensional and individualized interventions.

In summary, the process of fear of falling may begin at the time of the fall, often

coinciding with the stroke, possibly making the time of the development of fear an

important issue. We found that mobility issues related to changes in the body greatly

impact falls and fear of falling, and that the actual fear or concern may differ dependent

on individuals, ability levels, and possible fear of stigma or embarrassment. Interestingly,

participants naturally developed strategies to manage fear of falling and their fall risks.









Perhaps this was necessary because for some, fear of falling became an all consuming

aspect of life, impacting activity and participation.

Limitations

There are several limitations to this study. Our study primarily used qualitative data

derived from a larger study. We were restricted to a convenience sample. Common to all

qualitative studies, generalization is not possible, although findings may be informative

across similar populations.

This study was a secondary analysis of naturally occurring data. There was not a

specific interview question related to falls, fear of falling, or post-stroke mobility, and we

did not include a standardized fear of falling or falls incidence assessment. We were

dependent on the use of natural conversation elicited from questions regarding changes

since stroke, concerns about bodily changes, and barriers to everyday life to determine

those who would be considered fearful of falling. Although this naturalistic approach

derives significant amounts of information, all of those with fear of falling may have not

been considered in the qualitative and quantitative analyses, thus possibly reducing

detection of fear of falling incidence.

Future Research

Because falls and fear of falling are unpredictable, it is of great concern to those

managing life post-stroke. This preliminary research provides insight into the

development of fear of falling after discharge home post-stroke and the impact it has on

activity and participation. It is evident that some people develop a fear that promotes safe

completion of activities. However, others are likely to engage in a cycle of restricted

activities and then experience further functional losses. This plays into the "vicious

circle" portrayed by Delbaere and colleagues who suggested a pattern between reduced









activities and decreased muscle strength and balance, leading to further declines in ADLs,

increased falls incidence and fear of falling, and completing the circle with additional

declines in activities [114]. Li et al. discussed the existing relationship between fear of

falling and falls efficacy, the effect on balance and physical disability, continuations in

deteriorated health, and future falls and development of fear of falling [194].

Clearly, more interventions are needed to assist stroke survivors and their

caregivers to effectively manage this cycle. It is important to acknowledge the number of

individuals who return home with significant residual mobility losses. This was a

relatively high functioning post-stroke population, and still many discussed fear of falling

and the necessity to manage it with assistive devices, activity restriction, and decreased

functioning.

Future studies are needed to better define the natural history and experience of the

development of post-stroke fear of falling in the home and community. The utilization of

standardized fear of falling assessments, such as the Falls Efficacy Scale or the

Activities-Specific Balance Confidence Scale, both recently found valid and reliable for

the post-stroke population, [173-175] combined with qualitative data will provide more

complete explanations to better understand fear of falling development. This dual

qualitative and quantitative research study provided preliminary information to justify

future research. Addressing the impact of fear on quality of life and life satisfaction will

be an important step in determining the impact of fear on post-stroke management.

Important future research will include the advent of a fear of falling intervention specific

for the post-stroke population. Likely, interventions to manage fear of falling and reduce






76


fall rates will require individual treatment plans and will need to address the very issues

described by these participants.














CHAPTER 5
CONCLUSION

The objective of this dissertation was to utilize secondary data from two larger

studies to examine the impact of post-stroke gait velocity and fear of falling on activity

and participation [8, 11]. In Chapter One, we presented a conceptual framework as the

foundation for this research (Figure 1-2). The framework indicates that those who sustain

a stroke are likely to demonstrate sensory, cognitive, and motor impairments. These

impairments are reflected by mobility disability, specifically changes in gait speed and

fear of falling. Through reviews of the literature, we speculated that change in gait speed

or the development of fear of falling would be associated with change in stroke survivor

performance of activities of daily living (ADLs) (including mobility), instrumental

activities of daily living (IADLs), social participation. Additionally we believed that such

changes in activity and participation, and therefore independence, would impact caregiver

depression, burden, and coping.

Our findings indicate that mobility disability was demonstrated in both of our post-

stroke populations. The first study examined clinically meaningful changes in gait speed

and the second study explored fear of falling. In support of our model, we observed that

those who portrayed a clinically meaningful increase in gait speed demonstrated

improved performance in ADLs, IADLs, mobility, and social participation. We also

described how a post-stroke veteran population characterizes fear of falling in the first six

months after discharge. In addition we examined post-stroke activity, participation, and

depression in those discussing fear of falling.









In the fist study, we measured the proportions of participants who successfully

advanced to a higher ambulation classification, demonstrating a clinically meaningful

change in gait velocity. Forty-five percent of our total sample transitioned to a higher

classification; however, after baseline gait speed stratification, 63% of those walking

slower than 0.4 meters/second (m/s) and 38% walking between 0.4 and 0.8 m/s advanced

to the next ambulation classification. This indicates that those with the slowest speed, and

possibly the most severe mobility deficits, have the greatest potential for gains in gait

velocity.

We also compared the differences in Stroke Impact Scale (SIS) measured

ADLs/IADLs, mobility, social participation, and physical functioning (SIS-16) dependent

on success or failure of advancement to a higher ambulation classification. After

controlling for a significant difference in age, all SIS scores for those with baseline gait

velocity less than 0.4 m/s were statistically different. In contrast, only the participation

score was significantly different for those with baseline gait velocity between 0.4 and 0.8

m/s. This suggests that a transition to the next ambulation classification is a clinically

meaningful change because it is related to increased function, particularly for the initially

more impaired stroke survivors. This is important as it validates the previous ambulation

classification developed by Perry and colleagues [9]. More importantly, it confirms the

use of ambulation classification in clinical and rehabilitation research settings. It indicates

that using ambulation classification is appropriate for goal setting and that increased gait

velocity is associated with highly significant increases in performance of activity and

participation.









In the second study, we used qualitative and quantitative data to examine how post-

stroke veteran populations characterize fear of falling and the relationship between fear

and ADLs, IADLs, and depression. Additional exploration of caregiver burden, coping,

and depression for those caring for post-stroke individuals with fear of falling was

completed. It is evident that those with fear demonstrated slightly lower scores for almost

all Functional Independence Measure (FIM), Frenchay Activity Index (FAI), and

depression scores. This trend was also established for individual FIM and FAI items and

caregiver burden, depression, and coping.

Content analysis and review of the qualitative interviews verified that many

participants naturally discussed post-stroke falls and fear of falling. We discovered that

participants characterize post-stroke fear of falling with five main factors, including: (1)

the importance of the time of the initial fall, (2) how post-stroke related changes in the

body were associated with falls and fear of falling, (3) the pervasive fear and concern of

future falls, (4) a continuum of everyday and unpredictable fear of falling, and (5) the

natural strategies utilized and discussed by participants for the management of fear of

falling and the prevention of falls.

These qualitative findings can be related to the examination of data retrieved from

the standardized assessments. Participants discussed concern regarding falls during

performance of both ADLs and IADLs, but it seems that participants were more likely to

discuss fear of falling in regard to the performance of higher level activity at home and in

the community. A small difference in FAI scores between those with and without fear of

falling is apparent. This implies that fear of falling had a bigger impact on higher level

IADLs in this relatively high functioning post-stroke population. Of additional









importance, participants naturally developed strategies to prevent falls and manage fear

of falling. This may impact future interventions to decrease falls and fear of falling in this

population. Programs may need to be individualized dependent on the need and abilities

of the post-stroke individual. This exploration warrants future research of post-stroke fear

of falling.

In conclusion, we studied two post-stroke community dwelling populations, and

although all participants lived at home, we established that many continued to

demonstrate mobility impairments. The present studies provide support of the negative

impact of post-stroke mobility changes on activity and participation. Further study of gait

speed change and its influence on activity and participation is warranted. Natural

recovery may play an important role in improvement, but further evidence is needed to

determine appropriate interventions and timing of intervention to best enhance gait

velocity and consequently improve activity, participation, and quality of life. Future

research is necessary to better understand the true trajectory of the development of fear of

falling after stroke. It is evident that fear of falling development was very individualized

and our results provide preliminary data demonstrating that prevention strategies also

need to be individualized. This preliminary research provides foundational data to

continue investigation into post-stroke gait velocity and fear of falling, its impact on

everyday life, and future interventions. Collectively, this research will promote our

understanding of post-stroke mobility and its impact on functional independence.















APPENDIX
EVIDENCE BASED TABLE FOR FEAR OF FALLING AND ACTIVITY
RESTRICTION















Table A-1. Fear of falling and activity restriction
Article I Design I Sample I Fear of falling assessment Functional Activity Measures Results

Arfken, et al., Cross- 890 "At the present time, are you very Mobility activities 29% reported some FoF
1994) sectional fearful, somewhat fearful, or not Social activities Of those very FoF
[43] analysis of fearful that you may fall (again)?" Depression o 48%not satisfied with life
data from a Life satisfaction o 25% depression
prospective Frailty measure o decreased mobility and social activities
study 1 year o 91% reported at least one characteristic of
follow up frailty
o 85% exhibited diminished balance
o 22% were delayed in getting up after
sustaining a fall
o 85% impaired balance
Brouwer, et al., Cross- 50 Activity-specific Balance Human Activity Profile Those with FoF had lower ABC scores,
2004 sectional 25 with FoF Confidence decreased balance, slower gait speed, lower
[225] study and activity limb weakness, and decreased physical
curtailment and health.
25 without FoF Similar activity profiles
Bruce, et al., Cross- 1500 females "Are you afraid to fall?" "Do you participate in any sports 34% afraid of falls
2002 sectional "Do you limit any household recreation or regular physical More FoF in sedentary woman (45.2%)
[230] analysis of activities because you are exercise?" FoF was independent risk factor for
baseline data frightened you may fall?" "Please list any sports recreation nonparticipation in physical activity
from a Do you limit any outside activities or regular physical activity, Analysis suggests FoF affected activity levels
longitudinal because you are frightened you including walking, that you at a predisability stage in those with mildly
study may fall?" undertook in the last 3 months" impaired mobility
(duration / frequency)
Chandler, et al., Secondary 149 male "Would you say that you are Mobility performance 43% of the high risk participants were very
1996 analysis of veterans somewhat afraid, not afraid, or very PADL and IADL afraid of falling
[113] data from a afraid of falling?" Change in inside and outside 55% had prior fall
prospective activity Walk time and life space reduced in nonfallers
observational who were very afraid of falling
study of falls Increased depression in those very afraid of
risk falling
Decreased functional reach and activity for
those very afraid of falling
Decreased walk time, mobility skills,
functional reach, IADL, PADL, lifespace,
and activity levels if a faller AND very
afraid to fall
Walk time and IADL were independent
contributors to FoF













Table A-1. Continued
Article Design Sample Fear of falling assessment Functional Activity Measures Results
Cumming, et al., Secondary 418 at baseline Falls Efficacy Scale ADLs Those with lowest confidence in balance had
2000 data form a and 307 at 12 "Are you afraid of falling?" Use of community services increased risk of falls, poorer health,
[143] prospective months significant declines in ADLs, lowest QoL
OT home
visit falls
prevention
study
Delbaere, et al., Cross- 225 (and 221 Survey of Activities and Fear of Survey of Activities and Fear of Frequent fallers more likely to avoid FoF
2004 sectional for longitudinal Falling in the Elderly (SAFFE) Falling in the Elderly (SAFFE) related activities
[114] study and portion) Scale Scale Mobility tasks avoided the most by those with
longitudinal Physical Performance Test FoF
study 1. i i i. .i FoF activity restriction was correlated with
physical performance, forward excursion of
the center of pressure and muscle strength
FoF and activity restriction predicted falls at
the one year follow up
Stated FoF is a "vicious circle of frailty"
where individuals cease activities, but
become more fearful and continue to reduce
activity, decreasing mobility levels, and
becoming more fearful
Fletcher and Cross- 2,304, all "Limited going outdoors due to fear Minimum Data Set for Home 41.2% restricted activity de to FoF
Hirdes, 2004 sectional receiving home of falling (e.g., stopped using bus, Care 27% sustained previous fall
[229] study care services goes out only with others) Clinical Assessment Protocols Predictive factors of activity limitation
IADLs o Female
o Older
o Need for informal support for IADLs and
ADLs
o Being alone for long periods of the day
o Impaired gait
Howland, et al., Sample 266 "Are you afraid of falling?" Falls history 55% with FoF
1998 survey Social support 56% of those with FoF restricted activity
[148] Fear related to function and social support
Those with restricted activity:
o Did not communicate about falls
o Less social support
o Knew someone who had fallen
Kressign, et al., Base-line 287 Falls Efficacy Scale CESD About 12 of participants demonstrated fear of
2001 cross- Activity-specific Balance 360 turn falling
[228] sectional Confidence Functional reach Those fearful were more depressed and used a
study 10-meter walk walking aid
Single limb stands FoF was correlated to all functional measures
Picking up and object Depression, walking-aid, slow gait speed,
Chair stands being African American related to being
more fearful












Table A-1. Continued
Li, et al., 2003 Cross- 256 Assessed with the Survey of Assessed with the Survey of FoF varied across differing activities of the
[227] sectional Activities and Fear of Falling in the Activities and Fear of Falling in SAFFE
study Elderly (SAFFE) Scale the Elderly (SAFFE) Scale 18% reported "high fear"
Berg Balance Those with high fear more likely to report fear
Functional Reach Test with activities of the SAFFE
Dynamic Gait Index for Fallers had a higher SAFFE score
functional mobility Difference in balance, functional mobility,
IADLs IADLs, and QoL between those with high
Quality of Life via SF-12 and low fear
Those with higher fear engaged in fewer
activities
Murphy, et al., Cross- 1064 "Afraid of falling?" ADLs 24% reported FoF
2002 sectional Those with FoF were asked "did IADLs 19% reported FoF and activity restriction
[187] study the fear cause them to cut down on CESD Highest activity restriction seen in those over
activities?" 80, female, white, poor health status,
dizziness, 5 or more medications, visual
impairment, two or more diseases
Those with FoF and activity restriction were
more likely to be 80 and over, female, 2 or
more disease, slow timed physical
performance, ADL disability, prior injurious
fall, anxiety, and depressive symptoms
Suzuki, et al., Cross- 135 "At the present time are you very Short Form 36 Health Survey Females more likely to express FoF
2002 sectional fearful, somewhat fearful, or not measured health related quality Older participants more likely to express FoF
[226] study fearful that you may fall?" of life and perceived changes in 63.7% were moderately or very fearful of
health status falling
Females: walking and bathing had significant
relationship with FoF
Majority of those who required assist with
ADLs answered "moderately" or "very
fearful"
Those with increased FoF demonstrated
decreased scoring on SF-36 subscales
o Physical problems
o Social functions
o Physical function
o General health perceptions
Yardley and Convenience 224 at baseline "In general, are you afraid of falling Consequence of Falling Scale Nearly half had fallen in previous year
Smith, 2002 sample form and 166 at 6 over?" (CoF) (validated by authors) 57% reported FoF
[186] a pragmatic months Answered: not at all, a little, quite a o Assesses fall related fears of o 46% a little afraid
double-blind bit, very much physical injury, long term o 11% more severe fear
randomized functional incapacity, FoF related activity avoidance increased with
controlled subjective anxiety, and age, female gender, and number of falls in
trial social discomfort. the last year.
Modified Survey of Activities and Each increase of reported FoF was associated
Fear of Falling in the Elderly with an increased in activity avoidance and
(SAFFE) Scale perceived negative falls consequences















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Full Text

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IMPACT OF POST-STROKE MOBILITY ON ACTIVITY AND PARTICIPATION By ARLENE ANN SCHMID A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL OF THE UNIVERSITY OF FLOR IDA IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY UNIVERSITY OF FLORIDA 2005

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Copyright 2005 by Arlene Ann Schmid

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This dissertation is dedicated in the me mory of my father, Albert R. Schmid.

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iv ACKNOWLEDGMENTS Many people have gotten me to this phase of my life. I thank my parents and sister for unending support and love, for always telli ng me that I could be successful. I thank my mother for teaching me that I c ould always be more, and do more. I thank Dr. Pamela Duncan for reminding me that I could always be more and do more everyday. I would never be here wit hout her support and dedi cation to my future. I also thank Dr. Maude Rittman for con tinuous encouragement and assistance, and wonderful everyday conversation that got me through this process. The rest of my committee, Dr. Lorie Richards and Michael Marsiske, have provide d wonderful guidance for many of the years that I have been pur suing my graduate degree, but have been outstanding as a dissertation committee. Friendship has been a wonderful requiremen t of graduate school, I think we would not survive without each other. I am honor ed to have known so many extraordinary people who will do so many great things. I am especially grateful for the friendship of Jessica, Roxanna, Rick, Ellen, Diane, Cesar, Jordan (thanks for the dog sitting too!!) and my neighbors, Nate and Gretchen. Michelle deserves her own sentence. She has been a great support, and always seemed to know wh at to do, plus those car rides to Buffalo created some type of weird bond (and I knew she would complain if she did not have your own line!!!). Megan (Meggy!!!) has been an outstanding friend, and has provided great information regarding th e Midwest!! And Marieke! My IL! She is the strangest

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v person I ever met. She is a great friend and has been so good to me. I thank her for being fabulous! Thank you all for everything, I am glad we have crossed paths The boys, the PhDemons, how will I ever get through th is new phase of my life without them? From day one we have depended on each other, and have grown to become something we never knew was possi ble. Michael and Dennis have provided wonderful friendship and have made this time of life so much better. Thanks to the two of them, I have many more happy memories and have had much more fun (as measured by the fun-ometer) than most on their way out of graduate school. But more importantly, they have both provided guidance, and I hope I have also assisted them along this long long road. And finally to BZ, we have made it th rough this. I now have no question that we can do anything, as long as we do it together. He is the sweetest and most wonderful person and I am very lucky to be spending the re st of my life with him, Kalo, and Maile. I thank him for always reminding me that I was capable of taking on the world.

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vi TABLE OF CONTENTS page ACKNOWLEDGMENTS.................................................................................................iv LIST OF TABLES.............................................................................................................ix LIST OF FIGURES...........................................................................................................xi ABSTRACT......................................................................................................................x ii CHAPTER 1 INTRODUCTION........................................................................................................1 Theoretical Models.......................................................................................................3 The World Health Organization Mode l: International Classification of Functioning, Disability, and Health...................................................................3 Theoretical Framework.........................................................................................6 Research Questions.......................................................................................................7 2 REVIEW OF THE LITERATURE..............................................................................9 Introduction................................................................................................................... 9 Mobility in the Commun ity Dwelling Elderly............................................................10 Gait Velocity.......................................................................................................11 Gait velocity as an outcome measure...........................................................11 Gait velocity and other aspects of mobility..................................................12 Falls.....................................................................................................................12 Incidence and consequences of falls in the community dwelling elderly....12 Multifactorial risk factors.............................................................................13 Number of risk factors..................................................................................14 Fear of falling as a risk fact or and consequence of falls..............................15 Fear of Falling.....................................................................................................15 Incidence of fear of falling in the community dwelling elderly...................16 Fear of falling risk factors............................................................................17 Mobility in the Post-Stroke Population......................................................................18 Stroke and Mobility Impairment.........................................................................18 Stroke...................................................................................................................18 Gait Velocity After Stroke...................................................................................19 Falls After Stroke................................................................................................22

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vii Stroke as a risk factor for falls.....................................................................23 Post-stroke hip fractures...............................................................................24 Fear of Falling After Stroke................................................................................24 Post-stroke balance confidence....................................................................24 Post-stroke fear of falling assessments.........................................................25 Post-stroke fear of falling.............................................................................26 Activity and Participation...........................................................................................26 Restriction of Activity and Participation.............................................................26 Gait Speed, Activity, and Participation...............................................................27 Falls, Activity, and Participation.........................................................................29 Fear of Falling, Activity, and Participation.........................................................30 Caregivers...................................................................................................................31 Stroke and Caregiving.........................................................................................31 Mobility Disability and Caregiving.....................................................................32 Caregiver Depression..........................................................................................33 Caregiver Burden.................................................................................................33 Summary of the Literature Review.............................................................................34 3 THE IMPACT OF POST-STROKE GAIT VELOCITY CHANGES ON ACTIVITY AND PA RTICIATION...........................................................................35 Introduction.................................................................................................................35 Methods......................................................................................................................37 Design..................................................................................................................37 Participants..........................................................................................................38 Outcome Measures..............................................................................................39 Gait velocity.................................................................................................39 Activity and participation.............................................................................40 Statistical Analysis..............................................................................................41 Results........................................................................................................................ .41 Discussion...................................................................................................................44 4 FEAR OF FALLING AFTER STROKE....................................................................48 Introduction.................................................................................................................48 Methods......................................................................................................................50 Design..................................................................................................................50 Sample.................................................................................................................50 Data Collection....................................................................................................51 Outcome Measures..............................................................................................53 Functional status...........................................................................................54 Cognitive status............................................................................................54 Depression....................................................................................................54 Caregiver demographics, burden, and coping..............................................55 Analysis of Quantitative Data.............................................................................55 Results........................................................................................................................ .56 Description of Sample.........................................................................................56

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viii Relationships Between Fear of fallin g, Functional Status, and Depression........56 The Experience of Fear of Falling Post-Stroke...................................................60 Onset of falling with the stroke event..........................................................61 Experiencing the changed body...................................................................62 A pervasive fear of the unpredictable..........................................................64 Falls as an everyday life experience.............................................................66 Strategies for managing fear of falling.........................................................66 Discussion...................................................................................................................70 Characterization of Fear of Falling......................................................................71 Limitations...........................................................................................................74 Future Research...................................................................................................74 5 CONCLUSION...........................................................................................................77 APPENDIX EVIDENCE BASED TABLE FOR FE AR OF FALLING AND ACTIVITY RESTRICTION..........................................................................................................81 LIST OF REFERENCES...................................................................................................85 BIOGRAPHICAL SKETCH...........................................................................................105

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ix LIST OF TABLES Table page 2-1. Multifactorial risk factors for falls...........................................................................14 2-2. Six ambulation categories........................................................................................20 2-3. Gait Speed Classification.........................................................................................20 2-4. Community ambulation............................................................................................22 3-1. Community ambulation and gait speed....................................................................36 3-2. Baseline characteristics for participat ions with initial gait speed < 0.8 m/s (success = advancing to a highe r ambulation classification)...................................42 3-3. Proportions of success/fail for transiti oning to next ambulation classification between baseline and 3 months................................................................................43 3-4. Three month outcomes for entire sample.................................................................43 3-5. Three month outcomes stratified by gait speed........................................................44 4-1. Coding structure for qualitative interviews..............................................................53 4-2. Baseline data for those with a nd without fear of falling (FoF)................................56 4-3. Baseline/discharge data for those discu ssing fear of falling at one and six months57 4-4. Baseline/discharge data and outcome m easures for those with and without fear of falling...................................................................................................................58 4-5. Scoring of FAI and FIM items for t hose with and without fear of falling...............59 4-6. Frequency counts of fear of falling at one and six months......................................59 4-7. Proportions of those with and with out fear of falling and chi square......................59 4-8. Comparison of caregivers for participan ts with and without fear of falling............60

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x 4-9. Content analysis frequencies (deriv ed from 55 qualitative interviews)...................61 A-1. Fear of falling and activity restriction......................................................................82

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xi LIST OF FIGURES Figure page 1-1. The ICIDH-2 Model of Disablement.........................................................................4 1-2. Conceptual Model......................................................................................................7

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xii Abstract of Dissertation Pres ented to the Graduate School of the University of Florida in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy IMPACT OF POST-STROK E MOBILITY ON ACTIVITY AND PARTICIPATION By Arlene Ann Schmid August 2005 Chair: Pamela W. Duncan Major Department: Rehabilitation Science Post-stroke individuals often experience re sidual mobility impairments, reflected in decreased gait speed, increased falls, and the possible developm ent of fear of falling. This research utilized two secondary analyses to ex plore the impact of post-stroke gait velocity and fear of falling on activ ity and participation. The first study examined clinically meani ngful changes in gait velocity in 64 poststroke individuals. Velocity was measured at baseline and three months and was placed into a three tier ambulation classification. T-tests determin ed a difference in functional ability (activities of daily living (ADLs), in strumental activities of daily living (IADLs), mobility, and social participation) between those who did and did not successfully advance to the next ambulati on classification. After stratifyi ng by baseline gait velocity and controlling for age, those most severely impaired at baseline, and who advanced classifications, demonstrated si gnificant differences in all me asured functional abilities. In comparison, those moderately impaired on ly demonstrated signi ficant differences in

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xiii social participation. Thus, clin ically meaningful changes in gait speed were related to highly significant changes in all domai ns, particularly for participation. The secondary objective was to characterize post-stroke fear of falling. Review of qualitative interviews identif ied those with fear of falling. T-tests compared ADLs, IADLs, and depression measures between t hose with and without fear. No significant differences were found for the outcome meas ures; however, those with detected fear exhibited slightly worse scores on all meas ures. Content analysis of the interviews revealed five elements used to characterize pos t-stroke fear of falling: (1) onset of falling with stroke event, (2) ex periencing the changed body, (3) a pervasive fear of the unpredictable, (4) falls as an everyday life e xperience, and (5) the strategies for managing fear of falling. Such experiences and strategies became very individualized and imply the need for future research regarding assessmen t and intervention of post-stroke fear of falling. Collectively, these results indicate that many post-stoke individuals live in the community, but still demonstrate residual mobility deficits. Decreased gait velocity and developed fear of falling were related to activity restriction and modification, possibly leading to further losses of independence, plac ing individuals at risk for decreased quality of life and life satisfaction.

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1 CHAPTER 1 INTRODUCTION The American Heart Association reports stroke to be a common diagnosis occurring in 700,000 people annually. Stroke is the primary cause of disability and the third leading cause of death for those over 65 [1-4 ]. Stroke is also classified as the most disabling chronic disease and the cumulativ e consequences are often staggering for individuals, families, and society [5, 6]. Re sidual motor, sensory, and visual post-stroke deficits make mobility impairments common. Ch anges in gait velocity, falls, and fear of falling are common post-stroke mobility impairments. All may contribute to decreased performance of activities of daily living (ADL s), instrumental activities of daily living (IADLs), social participation, and over all declines in quality of life. The purpose of this disserta tion is to report findings fr om two studies. Both studies are secondary analyses of larger studies. Th e goal of the first study was to evaluate a clinically meaningful change in post-stroke gait speed and its impact on activity and participation levels post-stroke. A clinically meaningful change is important to determine as it is related to patient-valued benefits Barrett et al. discusses the need to merge patient-oriented and evidence-based framewor ks together by observing an “important difference” [7]. Such clinical significance can be seen by examining the sufficiently important difference (SID), the smallest am ount of patient-valued benefit required from an intervention to justify associated costs, risks, and other harms. We observed data on post-stroke gait speed changes and the exis ting relationship with ADLs, IADLs, and social participation to examine a clinically meaningful change in gait velocity.

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2 Data for this aspect of the study were derived from a prospective, randomized, controlled, single-blind, clinical intervention trial [8]. An analysis of three-month poststroke data related to gait speed was complete d. Participants were stratified by changes in gait speed. Comparisons were completed to determine significant differences in ADL, IADL, and social participation scores betw een those who succeeded and those who failed to increase gait speed at three months poststroke. Literature supports an association between gait speed and mobility [9, 10]. However, limited research currently exists to support the relationship between changes in gait speed and the resu ltant difference in performance of ADLs, IADLs, and social participation. The second study was completed to identify and describe the characterizations of fear of falling as reported by participants who have been discharged home following a stroke. We used qualitative and quantitative data from a longitudinal multi-site cohort study exploring stroke recovery and caregi ving at one and six m onths post discharge following acute stroke [11]. We examined th e relationship between fear of falling and demographic variables, depression, and th e ability to perform ADLs and IADLs. Additionally, caregiver depres sion and burden associated with fear of falling was explored. Qualitative interviews were semi-s tructured around issues related to the poststroke experience but did not specifically ask about fear of falling. Therefore, the interviews were examined to identify particip ants who discussed char acteristics related to fear of falling. The data specific to those with an identified fear were re-coded in QSR N6 (qualitative data computer software) C ontent analysis was used to analyze the qualitative data and define characterizations of fear of falling across 6 months after discharge home post acute stroke. Currently, th ere is a paucity of information related to

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3 the development of fear of fa lling after stroke. This study provi des initial exploration into this complex syndrome and will supply prelim inary data for future research regarding post-stroke fear of falling and the residual in fluence it has on activities and participation. Cumulatively, these research projects pr ovide researchers and clinicians with valuable information regarding performance of ADLs, IADLs, and social participation related to both gait speed a nd fear of falling after stroke. The impact of post-stroke gait speed on ADLs and IADLs is not well research ed and this study contributes critical information. This research is the first st udy to examine fear of falling in a stroke population with longitudi nal data that are both quantitati ve and qualitative. Results from the study indicates the need for development of a future index related to fear of falling in the population, and, more importantly, interventi ons to reduce both falls and manage fear of falling in the post-stroke population. These studies prov ide a foundation for future research related to post-stroke mob ility and activities and participation. Theoretical Models Two theoretical models have guided this research. The Interna tional Classification of Functioning, Disability, and Health was used to explain the fundamental relationships between post-stroke mobility and ADLs, IADL s, and participation (see Figure 1-1). An additional conceptual model was specifically proposed for these re search study questions. It was developed after a review and synthesis of the literature specific to gait velocity and fear of falling (see Figure 1-2). The World Health Organization Model: Inte rnational Classification of Functioning, Disability, and Health Various models of disablement have been developed and explored over the years. Because rehabilitation strives to reverse wh at was previously known as the “disabling”

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4 process, proactive alterations have occurred in the theoretical models. Therefore they are now termed “enablement models”, and repr esent models of hea lth and ability. The International Classification of Functioning, Di sability, and Health (ICF) is the model most frequently used in rehabilitation sc iences and was proposed by the World Health Organization (WHO) [12, 13]. The ICF has recently undergone revisions to better incorporate the concepts of health and ability and to replace terms such as impairment, disability, and handicap to allow for a more positive framework and clas sification system [13]. The ICF provides a framework for the analysis of health conditions, body stru cture, body functions, activity and participation, and environmental and person al factors [12]. There are two parts of the ICF; the first deals with func tioning and disability and is derived of the components of body structure, body functions, activity, and pa rticipation. The second part includes the components of contextual factors and include s environmental and personal factors. See Figure 1-1. Figure 1-1. The ICIDH-2 Model of Disablement Body structures are the anatomical parts of the body and include organs, limbs, and their components. Body functions are the phys iological or psychological functions of Activities Body Structure & Body Functions Environmental Factors Personal Factors Health Condition (disorder/disease) Participation Activities Body Structure & Body Functions Environmental Factors Personal Factors Health Condition (disorder/disease) Participation

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5 body systems. Body function and structure im pairments are related to significant deviation or loss. The activities and participation component collectively covers the complete range of individual and societal functioning a nd disability. The model captures the major actions of all people, regardless of culture or lifespan. Activity is the execution of a task or action that is completed by an indivi dual in a uniform environment. Activity limitations are difficulties a person may have in executing activities. Activity includes self-care, mobility, learning and applyi ng new knowledge, general tasks and demands, and communication. Participation is the involvement in a life s ituation in an individualÂ’s current environment. Restrictions in partic ipation are problems a person may experience in involvement in life situations. Particip ation includes domestic life, interpersonal interactions and involvement in relationships major life areas, and community, social, and civic life. Activities and pa rticipation have two qualifiers within the model. Capacity is the completion of an item in a neutral or standard environment and focuses on how an individual actually completes the task. Performance is related to completing the same item during daily life, at home and in the envi ronment. Capacity limitations indicate the discordance between capacities of people with and without health related condition. Performance limitations indicate a need for in tervention at the environmental level. Environmental and personal factors include external features of the physical, social, and attitudinal environment in which peopl e live and conduct their lives. Products and technology, natural environments, human-made changes to the environment, support and relationships, attitudes, a nd services, systems, and po licies are all aspects of environmental and personal factors.

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6 Theoretical Framework Substantive reviews of the li terature were completed. The literature pertaining to post-stroke mobility, gait speed, falls, and fear of falling were incorporated into the ICF model (see Figure 1-2). It was us ed to guide the research ques tions and analyses for these studies. In this study, the general health condition was “stroke.” The type of stroke and severity of stroke are important aspects th at may impact post-stroke mobility. Stroke related body function and body structure included sensory, cognitive, and motor impairments. Environmental factors include d caregiver depression, burden, and coping. Personal factors included age, race, and cogni tion. These stroke related impairments and personal factors might be related to activity limitations; such as difficulties completing ADLs and IADLs, including walking, stair cl imbing, dressing, bath ing, toileting, etc. Mobility is a construct of ADLs and is ther efore considered an as pect of activity. Gait speed and fear of falling are each aspects of post-stroke mobility, and are therefore considered as activity. It is thought that losses in gait speed and the de velopment of fear of falling adversely impact ADLs, IADLs, a nd social participation. Body function and structure impairments and esp ecially activity limitations ma y restrict participation in society, thereby limiting role fulfillment at home, work, and within the social environment. All of these post-stroke ch anges may also influence caregiver burden, coping, depression. The current study was develope d to specifically address the relationships between changes in gait speed and the development of fear of falling with ADLs, IADLs, participation, and depression. All aspects of the model may be affected by post-stroke mobility. Activity, participati on, and environmental/personal factors must therefore be

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7 addressed. Importantly, all are re lated to the greater aspect of quality of life and life satisfaction. Figure 1-2. Conceptual Model Research Questions The following research questi ons are derived from the re lationships depicted in Figure 1-2. The conceptual model was the gu iding focus of this study. We used both qualitative and quantitativ e data in this study. We explored the post-stroke relationship between clinically me aningful changes in gait velocity and performa nce of ADLs, IADLs, and social participation. 1. Does a change in gait velocity classifi cation impact the ability to perform ADLs, IADLs, functional mobility, and social participation after stroke? We also explored post-stroke fear of fa lling using qualitative and quantitative data. Our research question related to examinati on of the fear of falling qualitative data include: 2. How do the participants report and characterize fear of falling in the home or community environment? Stroke related impairments Sensory Cognitive Motor ActivitiesADLs and IADLs (including mobility, gait speed and fear of falling ) Body Structure & Body Functions Environmental Factors Personal Factors Health Condition (disorder/disease)Stroke •Type of Stroke •Severity ParticipationSocial participation Caregiver •Depression •Burden •Coping •Age •Race •Cognition Stroke related impairments Sensory Cognitive Motor ActivitiesADLs and IADLs (including mobility, gait speed and fear of falling ) Body Structure & Body Functions Environmental Factors Personal Factors Health Condition (disorder/disease)Stroke •Type of Stroke •Severity ParticipationSocial participation Caregiver •Depression •Burden •Coping •Age •Race •Cognition

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8 To complement the study, we examined the relationship between fear of falling and quantitative data: 3. How is post-stroke fear of falling relate d to performance in ADLs and IADLs? 4. How does caring for an individual with poststroke fear of falling impact caregiver burden and depression? 5. Is there a difference in the proportion of st roke survivors with fear of falling at 1 and 6 months post stroke?

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9 CHAPTER 2 REVIEW OF THE LITERATURE Introduction Stroke is a common problem a nd the leading cause of adu lt disability in the United States. There are many residual motor, sens ory, and visual post-s troke deficits making mobility impairments common. Common post-st roke mobility impairments include decreased gait velocity, falls, and the development of fear of falling. All may negatively impact performance of activities of daily living (ADLs), instru mental activities of daily living (IADLs), and social partic ipation. Such restriction in activity and participation has been associated with declines in li fe satisfaction and quality of life. The following review of the literature is ba sed on the International Classification of Functioning, Disability, and H ealth (ICF) [12] and the c onceptual framework found in Chapter 1 (Figure 1-1 and 1-2). As stated in Chapter 1, stroke rela ted sensory, cognitive, and motor impairments negatively influence post-stoke mobility, as demonstrated in decreased gait speed and increased falls and f ear of falling. These changes in post-stroke mobility may impact activity a nd participation. Activity and pa rticipation limitations may also negatively influence car egiver burden and depression. In this review of the literature, there will be an overview of mobility concerns of the community dwelling elderly. Sp ecifically, gait speed, falls, and fear of falling will be addressed. The limited existing literature specif ic to post-stroke gait speed, falls, and fear of falling will also be presented. Additional literature is presented on the impact of mobility on activity and particip ation; some is specific to the post-stroke population, but

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10 much is generalized to the community dwel ling elderly. Caregiver burden and depression are also explored in this review as care n eeds change for those with decreased activity and participation. Increased caregiver burde n and depression are associated with a patient’s history of strokes, fa lls, and decreased independence. The objective of this research was to dete rmine the impact of post-stroke mobility on activity and participation. Sp ecifically, the relationships be tween changes in gait speed and the impact on activity and participation were explored. Additionally, the characterization of fear of falling by a poststroke population was described. Performance of ADLs, IADL, and depression for those with fear was also examined. This research will provide foundational data for futu re studies examining the imp act of post-stroke mobility on activity and participation. Mobility in the Community Dwelling Elderly Mobility has been defined as the “ability to move from one place to another without assistance” [14]. It is a component of ADLs and is critical for the maintenance of independence and a sustained qual ity of life [14, 15]. Mobility disability is defined by the inability of individuals to “move effectively in their surroundings” [16]. It is a strong predictor of physical disability and often the first area in which olde r adults demonstrate disabilities [16-18]. The prevalence of mobility disability increases from 7.7% of those over the age of 65 to 35% fo r those over 80 years [19]. Disability is a risk factor for loss of independence, admission into care facilities, increased need for caregiving, and health ca re utilization [20-24]. Those who demonstrate mobility limitations are at risk for increas ed disability, dependence, morbidity, and mortality [17, 25-32]. Mobility limitations have been utilized in predicating disability outcomes [31].

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11 Changes in gait velocity, increased number of falls, and the development of fear of falling are three important aspects of mobilit y. All are common issues for the community dwelling elderly population. Disability may o ccur due to any or all of these mobility changes. Gait Velocity Mobility and mobility disability are co mmonly demonstrated by changes in gait velocities. Gait velocities often decrease with age and have been associated with severity of walking difficulties [33]. Cress et al. found that walking speed was the strongest indicator of self-perceived physical functioni ng [34]. Gait velocity has therefore become a frequently measured outcome and goal of rehabilitation. Gait velocity as an outcome measure Numerous elderly specific research studies have utilized gait velocity as a primary outcome measure to assess mobility impairment [35]. Velocity has been deemed useful in rehabilitation medicine and re search as it correlates well to many gait parameters [36]. It has been related to discharge placement following hospitalization in the elderly population [37, 38]. Gait speed is an important measure of stroke recovery as it is simple to measure and has been demonstrated as reliable and se nsitive to the stage of recovery post stroke [9, 35, 39]. Gait speed has been associated with discriminati on of stroke effects and is related to rehabilitation prognos is [40]. Studenski and colleag ues demonstrated gait speed measures of less than 0.6 meters/second (m/s) as a predictor of future health care utilization and declines in h ealth status [41]. In their st udy, 69% of the elderly with a walking velocity of less than 0.6 m/s devel oped new personal care difficulty as compared to 12% of those walking faster than 1.0 m/s.

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12 Gait velocity and other aspects of mobility Decreased gait speed has been related to falls and fear of falling [42-44]. Hausdorff et al. reported a relationship between falls and factors such as gait speed and functional status [45]. Maki demonstrated a relationshi p between decreased gait speed and increased falls and fear of falling in the commun ity dwelling elderly population [42]. Falls A fall has been defined as “an event wh ich results in a person coming to rest unintentionally on the ground or ot her lower level, not as a result of a major intrinsic event (such as stroke) or overwhelming hazar d” [46, 47] or as “falling all the way down to the floor or ground, or falling and hitting an object like a chair or stair” [48]. Falls are significant mobility issues addressed in the lit erature for the community dwelling elderly. Incidence and consequences of falls in the community dwelling elderly Falls are the leading cause of injurious d eath for those over 65 in the United States [49]. At least 30% of thos e over 65 and residing in the community fall annually; 10-20% fall two or more times [50]. After age 80, a nnual fall rates increase to 50% [46, 51]. The elderly who fall are likely to sustain more fall related trauma and serious injury and demonstrated increased health care utilization compared to young fallers [52]. Fall related trauma is more likely to be the cau se of death in older fallers [53] In 2001, more than 1.6 million emergency room visits and 15,000 deaths were attributable to falls [54]. Se vere consequences related to falls include hip fractures and head trauma, increased health care utilization, declines in ADLs and IADLs, decreased socialization, increased admissions to long-te rm care facilities, prem ature disability, and death [53, 55]. Additionally, King and Tinetti de termined that morbidity, physical injury,

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13 restriction of mobility, reduction of activity a nd participation, and generalized decreases in independence were fall re lated consequences [56]. Long-term care admissions. Donald and Bulpitt completed a longitudinal prospective cohort study to assess fall rela ted deaths and long-term care admissions [57]. Risk of death increased at both one and thre e years for recurrent fallers. However, all who fell demonstrated loss of function and independence, consequently increasing longterm care facility admissions. Tinetti et al. reported 40% of all nursing home admissions as being fall related [46]. Fractures as a consequence of falls. Approximately 360,000 adults suffer a fall related hip fracture each year [49]. Half of those who suffer a hip fracture will never regain their prior level of f unctioning. Hip fractures are a sign ificant concern as they are related to more deaths, disability, and medical costs than all other osteoporotic fractures combined [58]. Falls are an independent risk factor and contribute to 90% of all hip fractures [59, 60]. Minor injuries such as bruises and ab rasions occur after 30 %-55% of falls [48, 51, 61] and about 4%-6% of falls end in a fractur e, often of the hip [46, 48, 61, 62]. Death is uncommon following a fall; however, fall relate d hip fractures are th e leading cause of death for those over the age of 65 [63, 64]. Multifactorial risk factors A review of the literature indicates fall risks are cons idered multi-factorial [46, 51, 52, 65-75]. Meta-analyses and predictive models have been used to determine many of the evidence based risk factors. An epidem iological study determined that over 400 fall risk factors exist [76]. Factors may differ between community dwe lling individuals and those residing in long term care facilities [ 66]. Table 2-1 provides a list of common falls

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14 risk factors. Each factor is supported in the literature a nd by recent meta-analyses [46, 49, 51, 52, 66, 68-71, 77]. Table 2-1. Multifactorial risk factors for falls Risk Factor Supporting Evidence Disease & Disability Stroke [52, 78-86] ParkinsonÂ’s Disease [49, 61, 77, 87-89] Cardiovascular function/ disease/blood pressure issues [49, 66, 77, 90, 91] Arthritis [49, 52, 77, 92-94] Neuromuscular disease [49, 77] Depression [49, 52, 66, 77] Mobility Impairments Previous falls [52, 56, 95, 96] Balance and gait deficit [46, 52, 66, 97-100] Decreased gait speed/gait impairments/mobility impairments [42-46, 66, 69, 78, 90, 95, 97, 101] Foot problems [46] Decreased strength [46, 52, 61, 66, 71, 74, 90, 95, 97, 99, 102-109] Other Environmental factors [46, 66, 110, 111] Fear of falling [96, 112-115] Medications and polyphar macy [46, 66, 90, 116, 117] Cognition [46, 52, 66, 90, 118-122] Vision and hearing [48, 52, 66, 90, 97, 123] ADL participation [52, 66, 90, 107, 124] Use of assistive device [52] Female gender [46, 100, 125-130] Age [46, 74, 126, 131-133] Urinary incontinence [66, 69, 74, 134, 135] Number of risk factors The risk of falling is exacerbated when the actual number of exis ting risk factors is increased [46, 70]. Tinetti and colleagues co mpleted a community based study examining those with and without fall risk factors [46]. At one year, 27 % of individuals with one or no risk factors fell compared to 78% of thos e with four or more factors. Nevitt and colleagues indicated falls increased from 10% to 69% as the number of risk factors increased from one to four or more [61]. R obbins et al. compared one-year fall rates for

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15 those with and without three id entified risk factors: hip weakness, unstable balance, more than four medications [100]. One hundred percen t of those with all th ree risk factors fell compared to 12% who had none of the risk fact ors. Furthermore, Tine tti et al. ascertained that falls increased from 0% in those with 03 risk factors to 100% for those with seven or more factors [90]. Fear of falling as a risk fa ctor and consequence of falls Fear of falling has been esta blished as both a risk factor and consequence of falls [96, 112, 113]. Fear of falling may develop pos t-fall, or a fall may occur due to severe issues related to fear of fall ing [96]. Psychological trauma rela ted to a fall may be related to concern of suffering another fall or a resu lt of changes in function and pain related to a previous fall. Additionally, being stranded on the ground after a fa ll is a common fear. Friedman et al. determined fear of falling as a significant risk factor for future falls, and also demonstrated falls as a risk factor for the development of fear of falling [96]. Delbaere and colleagues examined the “vicious” cycle that exists between falls and fear of falling [114]. The authors conc luded fear of falling is both a risk factor and serious consequence of falls. Fear of Falling Fear of falling was first identified an d termed “postfall syndrome” [136] or ptophobia in 1982 [137], and then simply “fear of falling” in the later 1980’s [138, 139]. Fear of falling has been defined as a “dis abling symptom of impaired mobility among frail older people that is signi ficantly associated with depr ession, diminished performance in gait, and restricted IADL” [113] and “as a la sting concern about fall ing that leads to an individual’s avoiding ac tivities that he/she remains capab le of performing” [140]. Others have considered fear of falling as a loss of confidence balance abilities [141, 142]. It has

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16 also been defined as a general concept that describes low confidence (efficacy) for avoiding falls and simply being afraid to fall [143]. Incidence of fear of falling in the community dwelling elderly Fear of falling is a common difficulty faced by the elderly and is one of the greatest fears experience by the elderly [115]. Walker and Howland compared fear of falling to the fear of robbery, fear of forgetting an important appointment, fear of financial difficulties, and fear of losing a cheris hed item. Twenty-five percent of the 115 community based participants determined fear of falling as their greatest fear. Great variability exists surrounding the inci dence of fear of falling and incidence may or may not be related to a previous fall. Researchers have indicated fear of falling in 29%-92% of those recently sustaining a fall and 12%-65% of those without a recent fall [46, 70, 113, 115, 144-152]. Fear may develop si mply due to knowing someone who had sustained a serious fall or fall related injury [153]. Myers et al. examined fear of falling in community dwelling elders [150]. Fear of falling was assessed by asking “are you afraid of falling?”; 56% of those with a previous fall and 58% without a fall reported being fearful. Further analysis with the Falls Efficacy Scale determined similar results. The author s expressed that fear of falling may be underestimated in the elderly due to a fear of institutionaliza tion and a resultant refusal to participate in such research. Arfken completed a study to better determ ine the prevalence and the correlates of fear of falling [43]. F ear of falling was determined to be more prevalent among the older participants. Dependent on age, 10%-16% of men reported to be moderately fearful and 0%-5% were very fearful. Comparatively, 15 %-34% of women were moderately fearful and 6%-12% were very fearful. More recen tly, Stolze et al. completed a prospective

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17 study to investigate the preval ence of falls in differing neur ological diseases [154]. Prior falls were significantly correlated with fear of falling; 57% of the fa llers reported fear of falling compared to 24% of the nonfallers. Fear of falling risk factors Like falls, fear of falling is considered to have multifactorial risk factors. Other than a previous fall, risk factors correlated to the development of fear of falling include: increased age [43, 144, 148], female ge nder [43, 144, 148, 155, 156], hospitalization [143], and dizziness [157]. Murphy et al. comp leted a study to identif y predisposing risk factors for the development of fear of fa lling in an all female community dwelling population [158]. Predisposing factors for fear development included: age over 80, visual impairments, sedentary lifestyle, and lack of available emotional support. Mobility [42, 155] and prior falls [96, 112, 113] are significant risk factors for the development of future fear of falling. Maki and colleagues completed a cross-sectional study to investigate the relationship between fear of falling and postural balance and control [155]. The researcher s discussed significantly decreased scoring on balance assessments for those with fear of falling. Additionally, Maki et al. demonstrated an association between fear of falling and changes in mobility, such as decreased stride length, decreased speed, increa sed double stance time, decrea sed clinical gait scores, and increased stride [42]. Vellas et al. demonstr ated those with a re ported fear of falling experienced greater balance and gait disorders compared to those without fear of falling [144]. Ultimately, partic ipants with fear of falling e ndured decreases in mobility. Friedman et al. examined the temporal re lationship and the shared predictors of falls and fear of falling [96]. Falls and fear of falling data were coll ected at both baseline and 20 months. If participants were assessed as fearful of falling, they were asked about

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18 fear related activity restricti on. During the initial assessmen t, 27.8% participants reported a fall, 20.8% expressed fear of falling, and 46.2% of those with fear of falling had curtailed activities. At followup, nonfallers with fear were more likely to report falls than those without fear (32.6% vs 17.9%). Fall ers with no fear of fa lling at baseline were twice as likely than nonfallers to report f ear at follow-up (20.6% vs. 11.6%). Regardless of fall status, all who expressed fear of falling at base line were very likely to express fear again at 20 months. Researchers have discussed “evidence of a spiraling effect of increasing falls, fear, and functional decline” [114]. They stated fear of falling is not only an acute outcome secondary to falls, but “more lik ely recognition of being at ris k, both of falling and of the adverse outcomes that can result from falls”. Additionally it was concluded that once fear develops, it is likely to persist and infl uence activities and future fall rates. Mobility in the Post-Stroke Population Stroke and Mobility Impairment Post-stroke residual deficits may exacerbate the mobility issues of the community dwelling elderly population. Such mobility im pairments may negativel y gait speed, falls, and fear of falling after a stroke. Stroke Stroke is the primary cause of disability and is the third leadin g cause of death for those over the age of 65 [1-4]. The American Heart Association reports stroke as a common neurological event occurring in 700,000 people annually; over 4 million are living with residual deficits [159]. O’Sullivan has defined a stroke, or cerebrovascular accident (CVA), as “an acute onset of neurol ogical dysfunction due to an abnormality in cerebral circulation with resu ltant signs and symptoms that correspond to involvement of

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19 focal areas of the brain” [160]. It has been cl assified as the most di sabling chronic disease with deleterious consequences for individuals, families, and society [5, 6]. Because age is a known risk factor for st roke, stroke incidence is expected to increase as the population ages. Stroke preval ence is expected to increases as stroke survival rates continue to increase [161, 162] The majority of stroke survivors will be discharged from the acute care setting and will return home with mild or moderate physical, cognitive, or emotional deficits [ 78]. For example, in the Department of Veterans’ Affairs, 72% of all stroke survi vors were discharged home into the community in 1999 [163]. Gait Velocity After Stroke Mobility impairment, such as decreased ga it velocity has been related to stroke related outcomes. Perry and colleagues assess ed the relationship between gait speed and mobility in participants 3 months post-st roke [9]. Six ambulation categories were developed, each was related to post-stroke mobility and ambulation in and out of the home (borrowed from Hoffer et al. who utili zed a four step walking handicap scale for children [164]). See Table 2-2 fo r the six ambulation categories. Perry et al. used five clinical measures to place post-stroke par ticipants into one of the six categories. The measures included: a walking ability questionnaire, stride characteristics including gait speed, upright motor control testing, and proprioception. Many analyses were completed, and the diffe rence in gait velocity demonstrated the greatest statistical significance between cat egories. Discriminate analyses were completed and identified gait velocity as the only clinical measure to significantly predict placement into the categories. Those consid ered as physiological walkers had a mean

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20 velocity of 0.1 .03 m/s compared to community walkers with a gait velocity of 0.8 0.18 m/s. Table 2-2. Six ambulation categories Ambulation level Ambulation ability Physiological walker Walks only for exercise or in therapy Limited household walker Requires assist for some walking activities, does walk during some home activities Unlimited household walker Able to walk for all household activities, has difficulty with stairs and uneven terrain, not able to enter and leave the house independently Most-limited community walker Able to enter and leave their home independently, is able to ascend and descend curbs, able to manage stairs but with assistance, independent in at least one community activity, but needs assistance with others Least-limited community walker Independent in stairs, all m oderate community activities, and in local stores and uncrowded shopping centers Community walker Independent in all hom e and community activities, can walk with crowds and on uneven terrain, and able to be independent in shopping centers The classification system was condensed to de pict three distinct gait velocity based classifications (see Table 2-3). This was necessa ry due to the similarities in gait speed between the household walkers. A walking sp eed of less than 0.4 m/s was determined equivalent to severe gait impairments and the household ambulation category. Limited community ambulation equals moderate gait impairments and speeds between 0.4 m/s and 0.8 m/s. Those in the community ambulation category walk over 0.8 m/s and are considered to have mild or limited post-str oke gait impairment. The normal healthy older population has been documented to walk at a gait velocity of 1.33 m/s [165]. Table 2-3. Gait Speed Classification Speed, m/s Impairment Ambulation Ability < 0.4 Severe Household ambulation 0.4-0.8 Moderate Limited Community Ambulation > 0.8 Mild Community Ambulation 1.33 None Normal, Healthy Elderly Population

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21 Lord and colleagues extended this work and evaluated the relationships between post-stroke gait speed and community am bulation [10]. Community ambulation was defined as “locomotion outdoors to encomp ass activities such as visits to the supermarket, shopping malls, and back; social outings; vacations; and pursuit of leisure activities”. All 130 post-stroke participants lived at home, 115 pa rticipants received physical therapy for mobility impairments and 15 did not require therapy. Mobility outcome measures assessed gait velocity, indoor and outdoor walki ng ability, functional mobility, and gait endurance. An additional self-report questionnaire assessed community ambulation according to unsupervised mobility. Part icipants were placed into one of four ambulation categories (see Table 2-4.), 1) not ambulating outside of the home, 2) ambulating as far as the letterbox, 3) ambula ting within the immediate environment, 4) ambulating in a shopping center and/ or other places of interest. Those not requiring physical therapy poststroke demonstrated the fastest gait velocity. Gait speed was within normal limits for this group and significantly higher than the overall mean, 1.36 m/s compared to .94 m/s. Gait speed differed between the four categories and increased as community ambula tion increased (Table 2-4). The self-report questionnaire indicated 14.6% of the part icipants were unable to leave their home unsupervised, 16.9% were able to walk to th e letterbox, 7.6% were limited to ambulating in their immediate environment, and 60.7% were able to ambulate within a shopping center and/or other place of interest. The aut hors concluded gait velocity was important to community ambulation and demonstrated that nearly one third of the sample was not able to ambulate independently within the community after a stroke.

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22 The relationship between gait speed a nd mobility has been supported in the literature. However the relationship between ch anges in post-stroke gait velocity and the ability to perform ADLs, IADLs, and social participation has never been explored. Table 2-4. Community ambulation Group Community Ambulation Leve l % of Sample Speed (m/s) 1 Unable to leave home 14.6% 0.515 m/s 2 Able to walk to letter box 16.9% 0.66 m/s 3 Limited to immediate environment 7.6% 0.82 m/s 4 Ambulate in shopping center 60.7% 1.14 m/s Falls After Stroke Falls are considered the most common medi cal complication afte r stroke [166]. Fall rates increase significantly post-stroke due to motor and sensory impairments and residual functional, cognitive, and emotional de ficits. These deficits are often related to mobility impairments and losse s in ADLs, IADLs, social participation, and overall quality of life. Falls may contribute to pos t-stroke residual impairments and further decreased abilities to complete ADLs and IADLs. Researchers have shown 22-39% of the acute stroke population falling before hospital discharge [166-168]. Thos e who fall while in the hospita l are twice as likely to fall after discharge. Existing research indicates falls remain an issue at discharge [78, 79] and still at 10 years post-str oke [82, 169]. Forster and Young examined falls incidence and consequence and reported 73% of the part icipants fell in the first six-months poststroke [79]. Importantly, only 21% of those who fell during the study had fallen prior to their stroke. The “fallers”, t hose with two or more falls, wa lked with a slower gait speed, were engaged in less social activity, and were more likely to be depressed.

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23 Stroke as a risk factor for falls Stroke is one of the most commonly cited ri sk factor for falls [82]. Hyndman et al. determined stroke as a risk factor for falls in a cross-sectional, observational study [170]. Half of the 41 community dwelling stroke su rvivors sustained a post-stroke fall and 10 had fallen more than once. Additional risk factors for those deemed “repeated fallers” included: post-stroke mobility deficits, upper extremity ability, and declines in ADLs and IADLs. Byers and colleagues studied acute st roke survivors and concluded post-stroke fall risk factors included a history of falls, impaired decision making ability, restlessness, generalized weakness, and abnormal hematocrit levels [81]. Jorgensen et al. determined the risk of falling was at leas t twice as high for those post-st roke in a case-control study [82]. Forster and Young found those post-stroke who fell in the hospital were twice as likely to fall after being discharged home [79]. Yates and colleagues indicated that those post-stroke are at increased risk for falling [78]. They investigated the effect of accumulated impairments on the risk of falling in community-dwelling stroke survivors. Of 280 participants, 51% sustained a fall between 1 and 6 months post-stroke. Accu mulated post-stroke impairments were characterized as motor, motor and sensory, or motor and sensory and visual. Fall rates for those with accumulated deficits were compared to those without any of the impairments. Results from a multiple logistic regression indi cated that the risk of falling increased with motor impairment and motor and sensory impairments. Interestingly, those with motor and sensory and visual impairments had decrea sed falls risk. This was most likely due to increased severity of the stroke, decreased balance, and therefore overall decreased mobility. The authors concluded that th e community-dwelling post-stroke population demonstrate a higher risk of falling.

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24 Post-stroke hip fractures Those post-stroke are at risk for both falls and the development of osteoporosis of the hemiparietic limb, consequently, increasi ng risk for hip fractures [58]. Ramnemark and colleagues observed hip fr acture incidence in 1139 post-st roke individuals [171]. One hundred and twenty participants sustained 154 fractures, 84% of all fractures were secondary to an accidental fall. Hip fractur es accounted for 70 (45%) of all recorded fractures and most affected the paretic side A four-fold increase of hip fracture was demonstrated in this post-stroke population. Ramnemark, et al. completed an additi onal study examining those sustaining a femoral neck fracture [172]. Short-term outcomes and mortality were compared for those with and without a history of stroke. In tota l, 27.4% participants ha d sustained a stroke prior to the hip fracture. A dditionally, the majority of hi p fractures occurred to the hemiparietic limb and survival rates were reduced for these patients. Fear of Falling After Stroke Post-stroke balance confidence Currently, there is little research regarding the prevalence of fear of falling development in the post-stroke population. At this time, the only work related to poststroke fear of falling has been completed to validate fear of falling assessments for the post-stroke population [173-175]. The researchers have indicated that those who have sustained a stroke are likely to exhibit lowe r falls confidence while performing activities, thus demonstrated increased fear of falling. Decreased falls confidence, or falls effi cacy, is based on BanduraÂ’s theory of selfefficacy [176]. Those with low self-efficacy for a particular activ ity will tend to avoid that activity. In contrast, those with high se lf-efficacy will initia te the activity with

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25 enhanced confidence. The self-efficacy theory suggests a reciprocal relationship between efficacy and function; efficacy may influen ce function, but the ability to complete functional activities also infl uences efficacy. Fear of falli ng assessments are often based on self-efficacy and assess whether a person feel s confident in their ability to complete activities with out sustaining a fall [112, 147, 174]. Post-stroke fear of falling assessments Hellstrm and Lindmark completed a test-r etest reliability study of the expanded Falls Efficacy Scale (Swedish Version) (F ES(S)) and compared group differences in scores on the assessment [173]. The FES was developed by Tinetti et al. and measures self-perceived fear of falli ng during the performance of 10 common activities [112]. The FES(S) includes an additional three items, getting in and out of bed, grooming, and toileting. These three items were added due to the reduced independence often sustained by the post-stroke population. Thir ty post-stroke participants were included, overall-testretest-reliability was high and the FES(S) was indicated as a reliable assessment of falls efficacy in the post-stroke population. Hellstrm and colleagues completed additional reliability assessments to determine the ability of the of the FES(S) to assess clinically meaningful changes over time in the poststroke population [174]. The changes as measured by the FES were compared to changes evident using the Berg Balance Scale and the Fugl-Meyer balance and motor function subscale. The assessments were completed at admission and discharge from rehabilitation and 10 months later. The analyses of responsiveness determined indi viduals post-stroke demonstrated decreased fall related self-efficacy compared to elde rly participants in other fall studies. A very recent study examined the reliabili ty and validity of th e Activities-specific Balance Confidence (ABC) Scale for those pos t-stroke [175]. The ABC is a previously

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26 validated and reliable measure of balance confidence that measures confidence in performing various tasks without falli ng [150, 177, 178]. All pa rticipants were community dwelling ambulatory older adults who had sustained a stroke at least one year prior to the study. Significant correlation existed between the ABC and gait speed and balance assessments (Berg Balance). The aut hors concluded the ABC reliable and valid for the post-stroke population. Post-stroke fear of falling While there is profuse research related to fear of falling in the community dwelling elderly, there is a paucity of information spec ific to the development of fear of falling after stroke. It can be construed that as fall rates increase [79] and mobility decreases after stroke, an increase of f ear of falling will be demonstr ated. Motor function, balance, mobility, emotional well-being, and attention may all be diminished following a stroke. All may influence falls incidence and the development of fear of falling [78, 79]. Increased fear of falling may too be related to a realization of physical and cognitive declines developed post-stroke. Fear of falling has been demonstrated as bot h a risk factor for fa lls and as a serious consequence resulting from falls [96, 112, 113]. With post-stroke falls incidence as high as 73% [79], it is likely that th e rate of fear of fa lling is equally exacerbated after a stroke. However, there is little evidence-based literature to support this relationship. Activity and Participation Restriction of Activi ty and Participation Restriction of activity has been related to the development of disability in the elderly population. Health and functional st atus, health care u tilization, decreased independence, increased social isolation, and overall quality of life and life satisfaction

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27 are all impacted by activity curtailment [179, 180]. It is related to decreased independence and increases in caregiver burden. Restriction of activity has been used as an outcome measure in geriatric intervention trials attempting to reduce disability [181183]. Thus activity restriction is an important considerati on for the community dwelling post-stroke population. Gill et al. attempted to identify health and non-health related problems associated with activity restriction [ 179]. Within the 15-month study period, 76.6% of the elderly sample restricted activity during at leas t one month and 39.3% for two consecutive months. Health care utilizati on was elevated during months of activity restriction. Gill and colleagues also evaluated the relationship between restricted activity and disability development [180]. The authors concluded th at activity restriction was significantly related to disability development for the community dwelli ng older population. Guralnik et al. explored mobility disabil ity and found that limitations in mobility can lead to decreased performance of ADLs [17]. Such limitations in ADLs and IADLs have been related to disabili ty and increased health care utilization. It therefore is essential to explore the impact of mobility, su ch as gait speed, falls, and fear of falling, on activity and participation. Gait Speed, Activity, and Participation Gait speed has been associated with community mobility [9, 10]. Those with declines in gait speed may demonstrate de creases in activity and participation and experience decreased opportuni ties to return to societal and personal roles [184]. Consequently, perceived quality of life and life satisfaction are at risk. Potter and colleagues completed a study to determine a relationship between gait speed and ADL performance in the elderly popul ation [184]. All participants were older

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28 than 65 and independently mobile. Particip ants were all admitted to inpatient or outpatient care, but not hospita lized due to a specific dia gnosis. All participants had nonsurgical hospitalizations, were medica lly stable, and were appropriate for rehabilitation. Participants with differing diagnoses and a range of functional abilities were eligible for inclusion, therefore, those w ith acute infectious illn esses, strokes, acute relapses of chronic neurological disease (Parkinson’s disease, multiple sclerosis), falls, and cardiovascular pathologies were included. Gait speed, ADLs, and me ntal status were assessed. Gait speed ranged from 0.05 m/s to greater than 0.55 m/s and was placed into one of six categories. The authors concluded that an associa tion between decrease d gait speed and ADL ability levels was evident. Those with a ga it speed of less than 0.25 m/s were more likely dependent in one or more ADL; only 36% of those with gait speed less than 0.25 m/s were considered independent in all ADL f unctioning. In contrast, 72.1% of those with gait speed between 0.35 m/s and 0.55 m/ s were independent in all ADLs. Studenski et al. completed a prospective cohort study to determine whether gait speed could be used as a “clinical vital si gn” in a community dw elling elderly population [41]. Outcome measures included demogra phics, health and functional status, and physical performance. Those with a gait speed of less than 0.6 m/s were categorized as slow walkers and demonstrated a 69% inci dence of new personal care difficulty. Comparatively, 28% of those w ith a gait speed of 0.6 to 1.0 m/ s and 12% with gait speed greater than 1.0 m/s demonstrated new care needs. The researcher s concluded that a slowing of gait speed has negative effects on overall mobility and the ability to complete ADLs and IADLs.

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29 Falls, Activity, and Participation Restriction of mobility and declines in ability to complete ADLs and IADLs are severe consequences associated with falls [56, 138, 170]. All are ne gatively related to decreased independence and quali ty of life. Stel and coll eagues examined fall related declines in functional status and physical activity [185]. F unctional status was measured with stair climbing, dressing, standing from a chair, cutting toenails, walking outside and transportation. Physical activ ity changes were measured with walking, bicycling, gardening, sport activities, and light and heavy household activ ities. Post-fall declines in functional status were reporte d by 35.3% of their sample a nd 15.2% reported declines in physical activity. Vellas et al determined that those who fell in a prospective study demonstrated restricted activity and decr eased independence at 6 months [138]. Tinetti and Williams completed a study to determine the impact of falls and fall related injuries on ADLs, IADLs, social ac tivity, and advanced physical activities in a community dwelling elderly population [141]. At one and three years, falling was associated with declines in ADLs, IADLs, and social participation. Those with multiple falls experienced greater declines in activity and participation and those with injurious falls also demonstrated declin es in advanced physical activ ity. An association between declines in activity and falls incidence and/or severity of injury was demonstrated, thus indicating a “dose response” relationship between falls and functional losses. Yardley and Smith examined the most co mmonly held beliefs regarding falls and activity curtailment [ 186]. The Consequence s of Falling (CoF) Scale was developed and validated by the authors. It asse ssed types of fear related to fa lls, such as fear of physical injury, fear of long-term functional incapacit y, fear of subjective anxiety, and fear of social discomfort. Demographics, mobility leve l, use of a walking aide, falls history and

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30 incidence, falls related safety, and fear of falling were also assesse d. Nearly half of the participations reported a fall in the previous year. Long term functional disability and loss of independence were cited as the most comm on fears. Social discomfort and a loss of confidence and personal identity were al so indicated as common fears. Activity restriction was correlated with anticipate d damage to personal identity and loss of independence. Social participation was a voided to decrease the risk of social embarrassment secondary to a fall. The CoF was correlated to activity avoidance, but importantly, it also predicted increased avoi dance of activity performance at follow up. Fear of Falling, Activity, and Participation Activity restriction has been demonstrated in 20% to 55% of those reporting fear of falling [46, 93, 148, 187]. Activity limitations and decreased social pa rticipation may be due to fear of falling or due to the injury or pain experienced from a previous fall [46, 48, 188]. Overall decreased independenc e, quality of life, and life satisfaction are at risk due to fear of falling related change s in activity and participation. Fear of falling has been related to dec lined performance of ADLs and IADLs, social participation, and community integration [43, 137, 143, 149, 151, 152, 189-192]. Additionally fear of falling is related to decreased mobility, stair climbing, vision, general health, depressed mood, decrea sed social and physical activ ities, and poor life satisfaction [10, 56, 113, 140, 147, 186]. Fear of falling is associ ated with deteriorated health status [143, 144, 148, 149, 152] and therefore negativel y influences physical and functional well-being [193]. All lead to further functiona l declines, decreased quality of life, and increased caregiver burden [113]. Li et al. summarized a relationship regardi ng fear of falling and concluded that fear negatively influences falls related self-efficacy [194]. This subsequently impacts balance,

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31 physical ability, and mobility impairments. Th is cycle accelerates declines of physical health, activity, and participati on; possibly increasing the inci dence of falls. Delbaere et al. emphasized the “vicious cycle” of frailty regarding fear related avoidance of activity. They concluded an association between fear of falling with new physical declines such as increased frailty, decreased postural control, and decreased muscle strength, and an overall increase of falls risk, thus le ading to increased fear of falling [114]. The literature regarding the impact of fear of falling on activity and participation is profuse. It has been identified, reviewed, a nd synthesized into an evidenced based table found in Appendix a. It is evident from this review of the literature that those with developed fear of falling are at great risk for decreased performance in ADLs, IADLs, and social participation, and are therefore at signifi cant risk for declines in quality of life and life satisfaction. Caregivers Stroke and Caregiving As demonstrated in the conceptual mode l, post-stroke mobility disability may negatively impact activity, participation, a nd depression, thereby increasing dependence and possibly increasing caregi ver depression and burden. A re view of the literature reveals abundant caregiving research, however, there is a paucity of research specifically related to caregiving after a stroke or specifically rega rding the burden and stress experienced by informal caregivers [4]. Those participating in post-stroke care giving may provide assistance in many life domains including mobility, self-care, and communication. However, stroke related complications such as cognitive impairment depression, and personality changes may require increased provision of caregiving a nd assistance [4, 195]. A post-stroke reduction

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32 in ADL and IADL performance frequently results in reduced levels of functional independence and subsequently increases the necessity of additional care in the home. Often, those post-stroke are dependent on car egivers to maintain community living and stave off facility or institution admission. Th e review of the literature indicated more research is necessary, specifica lly in the areas of caregiver physical health, ethnicity, and caregiver interventions. Mobility Disability and Caregiving Researchers have demonstrated relations hips between mobility disability and limitations in activity and participation and consequential losses of independence, and increased need for care, health utilizati on, and admission into care facilities [14, 15, 2024]. Specifically, caregiving after falls has been explored. The resul ting complications of a fall can be severe and include death, fractures, and further losses of independence. It is therefore expected that falls are negativ ely associated with caregiver burden and depression. Forster and Young demonstrated ne gative effects for the caregiver when postfall declines in ADL performance were evid ent [79]. The caregivers taking care of “fallers” were more stressed, a nd one-third of all caregivers st ated that concern for a fall limited their own social activity. Stolze et al also indicated incr eased burden for those caring for the post-fall populat ion [154]. Howland and colleagues also demonstrated a relationship between caregiver support and fear of falling related activity curtailment [148]. There has been no research completed speci fically examining caregiving after fear of falling development or changes in gait sp eed. However it is expected that caregiving needs will increase due to mobility related declines in performance of activities.

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33 Caregiver Depression Researchers have indicated high levels of depression associated with stroke survivor caregivers compared to non-caregiver s [4]. The prevalence of depression in the caregiving population ranges from 34% to as high as 52% [196-199]. Spousal and female caregivers have demonstrated increased de pression which tends to persist over long periods of time [200]. A Japanese study demonstrated depression in 52% of 100 stroke caregivers, this was double the depression rate for the contro l group (23%) [201]. Hartke and King found that depressed caregivers were more likely to have difficulty with caregiving, report more problems with the care recipient, experience fi nancial concerns, and re port a decrease in social involvement [202]. Researchers ha ve found a relationship between increased stroke caregiver depression and increased stroke severity [203, 204]. Kotila et al compared the incidence and severity of depre ssion at 3 and 12 mont hs post-stroke [205]. Both stroke survivors and their caregivers de monstrated increased levels of depression which were maintained at the one-year follow up. Caregiver Burden Morimoto and colleagues found that the strongest predicto r of declining quality of life for stroke caregivers was a high level of caregiver burde n [201]. Burden is caused by feelings of large responsibilit y, uncertainty about the care ne eds of the stroke survivor, decreased social interacti on, and being the sole provide r of care [206]. Bugge and colleagues (1999) studied careg ivers at 1, 3, and 6 months post-stroke. The amount of time spent helping a patient, the amount of time spent with the patient, and the caregiverÂ’s health were determined as the mo st influential factors of caregiver strain

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34 [207]. Caregivers providing greater levels of care (e.g. toileting, ba thing) experienced greater emotional distress and greate r caregiver burden [208, 209]. Summary of the Literature Review This review of literature demonstrates that post-stroke motor, sensory, and cognitive impairments influence mobility. Fa lls, fear of falling, and gait speed are all impacted aspects of post-stroke mobility and al l may be related to restriction of activity and participation. Activity curtailment has been related to decreases in quality of life and life satisfaction. There is no research specific to the development of fear of falling post-stroke. This research was completed as an initial explor ation of fear of falli ng in the post-stroke population. Fear of falling was characterized for the post-stroke population, and activity restriction was explored. Si milarly, the relationship betw een post-stroke gait speed changes and its impact on activity and partic ipation were evaluated. This research will provide a foundation for exploring the impact of post-stroke mobility on activity and participation.

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35 CHAPTER 3 THE IMPACT OF POST-STROKE GAIT VELOCITY CHANGES ON ACTIVITY AND PARTICIATION Introduction The American Heart Association reports that 700,000 people sustain a stroke annually [159]; it is the primary cause of adu lt disability [2-4]. Stroke related deficits include motor, sensory, and cognitive impair ments that negatively influence mobility. Losses in mobility are often reflected by dec lines in gait velocity [40, 210]. Mobility impairments and changes in gait velocity are related to losses of independence and decreased ability to reengage in the community [9]. Gait speed is an important clinical and re search outcome measure. It is a common measure of mobility and a reliable, valid, and sensitive measure of post-stroke locomotor recovery [9, 39]. It discriminate s the effects of stroke and is related to the potential for rehabilitation recovery [40]. Ga it velocity is a predictor of health status and health care utilization in the elderly [41] It is associated with perf ormance of activities of daily living (ADLs) and community ambulation [9, 10, 184]. Potter et al. determined a relationship be tween gait speed and ADL performance in the community dwelling elderly [184]. Par ticipants with multi ple diagnoses were included and those with decr eased gait speed demonstrated decreased independence. A gait speed less than 0.25 meters per second (m/s) was associat ed with dependence in one or more ADL; only 36% of those with gait speed less than 0.25 m/ s were considered

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36 independent in all ADLs. In contrast, 72.1% of those with gait speed between 0.35 m/s and 0.55 m/s were independent in all ADLs. Perry et al. examined the association between post-stroke gait velocity and ambulation [9]. The authors developed an am bulation classification related to necessary gait speed for home and community ambulation. Household ambulation was equal to severe gait impairment and velocity less than 0.4 m/s. Limited community ambulation was equivalent to moderate gait impairme nts and walking between 0.4 m/s and 0.8 m/s. Community ambulation indicated mild impairment and speed over 0.8 m/s. Increases in gait velocity were rela ted to improved home and community ambulation. The relationship between post-stroke ga it speed and community ambulation was further explored by Lord and colleagues [10] Participants include d 115 individuals who received physical therapy for mobility impairments and 15 not requiring such therapy. Mobility outcome measures assessed gait sp eed, indoor and outdoor walking ability, and gait endurance. An additional self-report que stionnaire assessed unsupervised mobility. Participants were categorized by community am bulation levels as seen in Table 3-1. Gait velocity differed between the categories and increased from 0.52 m/s for those unable to leave home to 1.14 m/s for those able to ambul ate in a shopping center. One third of the sample was not able to ambulate independent ly within the community after a stroke. Table 3-1. Community ambulation and gait speed Group Community Ambulation Level % of Sample Speed (m/s) 1 Unable to leave home 14.6% 0.52 2 Able to walk to letter box 16.9% 0.66 3 Limited to immediate environment 7.6% 0.82 4 Ambulate in shopping center 60.7% 1.14 In summary, the relationships between gait speed and ADL performance in the community dwelling elderly and between gait speed and post-stroke ambulation are well

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37 established [9, 10, 184]. However, it is not know n whether a change in post-stroke gait velocity is “clinically meani ngful”, as reflected by improve d functional abilities such as activity and participation. A clinically meani ngful change is important to determine as it is related to patient-valued benefits. Barrett et al. disc ussed the need to observe a clinically “important difference” by merg ing patient-oriented and evidence-based frameworks together [7]. Such clinical meaningfulness can be seen by examining the sufficiently important difference (SID), the smallest amount of patient-valued benefit required from an intervention to justify associat ed costs, risks, and other harms. Lord and Rochester recently stated a need for a con ceptual framework related to post-stroke mobility and that there is “no guarantee that increases in gait velocity will denote a meaningful improvement in performance” [ 211]. The objective of this study was to determine whether a change in gait speed over three months was clinically meaningful as reflected by the impact on ADLs (including mobility), instrumental activities of daily living (IADLs), and social part icipation after stroke. Methods Design Data in this study are derived from a pa rent study; a prospective, randomized, controlled, single-blind, clinical interventi on trial [8]. The trial was completed to determine the effects of a therapist-supervis ed 12-14 week home-b ased, structured, and progressive exercise intervention on particip ants post-stroke. The intervention focused on upper and lower-limb strength, balance, enduran ce, and increased use of the affected extremities. The intervention group was compar ed to a usual care group who received rehabilitation as prescribed by their physicia n and bi-weekly visits from research staff. Informed consent was received from all pa rticipants through methods approved by the

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38 Institutional Review Board of the univers ity and each participating facility. All participants were recruited from an ongoing st roke registry. This secondary analysis was approved by the University of Florida Health Science Center Institutional Review Board. This analysis did not examine differences between intervention and usual care groups. Rather we examined the differences in ADLs, IADLs, and social participation between those who did and did not successf ully advance to the next ambulation classification as portrayed by Perry et al. [9]. For example, the participants considered successful, transitioned from an initial gait ve locity of less than 0.4 m/s to 0.4 to 0.8 m/s or faster or they advanced from an initial gait velocity between 0.4 to 0.8 m/s to greater than 0.8 m/s. Gait velocity was measured at baseline and repeated at 3 months. Participants All participants were selected from one of 17 medical facilities, all of which were partaking in an ongoing Kansas C ity Stroke Registry. All thos e registered gave informed consent and permission to be screened for elig ibility for future research studies. Those eligible for the registry had a confirmed diagnos is of a stroke within 3-28 days, were over age 50, and lived within a 50-mile radius. Re gistry exclusion criteria included the following: subarachonoid hemorrhage, bei ng lethargic, obtunded, or comatose, uncontrolled blood pressure, hepatic or rena l failure, NYHA III/IV heart failure, known limited life expectancy, or pre-st roke disability in self care; or previously lived in a nursing home prior to the stroke. Those in the registry were eligible to be sc reened for this randomized clinical trial. Inclusion for the parent clinical trial included: (1) stroke w ithin 30-150 days, (2) ability to ambulate 25 feet independently, (3) mild to moderate stroke deficits defined by a FuglMeyer score of 29 to 90 for upper and lowe r extremities, an Orpington Prognostic Scale

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39 score of 2.0 to 5.2, and palpable wrist extensi on on the involved si de; and (4) Folstein Mini-Mental Status examination score greate r than 16. Exclusion cr iterion included: (1) serious cardiac conditions (hos pitalization for heart disease within 3 months, active angina, serious cardiac arrhythmias, hypertroph ic cardiomyopathy, severe aortic stenosis, pulmonary embolus, or infarction), (2) oxyge n dependence, (3) severe weight-bearing pain, (4) other serious organ system disease, and (5) life expectan cy of < 1 year. All participants signed an informed consent to partake in the tr ial and all had approval from a primary care physician [8]. Ninety-two individu als completed the clini cal trial, 44 in the intervention arm and 48 in the usual care arm. Specifically, only 64 of the 92 participants were included in this three-month analysis because those walking > 0.8 m/s at baseline were excluded. This report does not compar e the intervention to the usual care groups, but combines all participants walking < 0.8 m/ s at baseline to allow for examination of clinically meaningful change s in post-stroke gait speed. Outcome Measures The parent clinical trial included the Or pington Prognostic Scale to measures stroke severity [212]. Disability outcomes meas ures included the Functional Independence Measure (FIM) [213], the Bart hel [214], the Lawton and Brody IADLs assessment [215], and gait speed thresholds for community am bulation [10]. Quality of life measures included subscales of the Stroke Impact Scal e [216] and the Medical Outcomes Study SF 36 [217]. Results for outcome measures are found elsewhere [8]. Gait speed, activity, and participation were the specifi c outcome measures used for this secondary analysis. Gait velocity Gait velocity was measured by the 10-Meter Walk, a valid and reliable measure for gait velocity assessment in the elderly pos t-stroke population [218]. The 10-Meter Walk

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40 consisted of two completed walks without rests in between and collected in meters/second. Specifically, the main outcome for this analysis was the proportion of participants who demonstrated “success” by transitioning from one ambulation classification to the next. Both baseline and final outcome m easures were placed into the ambulation classification previously devel oped by Perry et al.: < 0.4 = household ambulation 0.4 – 0.8 = limited community ambulation and > 0.8 = community ambulation [9]. Changes in gait velocity were considered as successful walking recovery when participants shifted from < 0.4 m/s to 0.4 – 0.8 m/s ( household to limited community ambulation ) or 0.4 – 0.8 m/s to > 0.8 m/s ( limited community to community ambulation ) [9]. A dichotomous variable of “success” or “fail” was utilized for the analysis. Activity and participation Activity and participation were assessed with the Stroke Impact Scale (SIS), a comprehensive and psychometrically robust stroke-specific outcome measure [216, 219]. The SIS was developed from the perspectiv e of patients, caregivers, and health professionals with stroke expertise. It has been demonstrated to be reliable, valid, and sensitive to change related to stroke rec overy. There are eight domains and 59 items in version 3.0, specifically, the SI S ADL/IADL, mobility, partic ipation, and SIS-16 physical functioning components were used for this anal ysis [220]. Items such as food preparation, bathing, toileting, shopping, and household ta sks were assessed with the ADL/IADL component. Mobility was assessed with item s regarding loss of balance, transferring, walking, and stair climbing. Pa rticipation items included wo rk, social activities, quiet recreation, family and friend roles, religious and spiritual activities, and helping others.

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41 The SIS-16 is a validated short instrument used to assess physical functioning with ADL and mobility items [221]. Statistical Analysis All analyses were completed using SAS statistical software. Simple descriptive statistics were used to describe demographi cs and outcomes scores for the entire sample. Additional descriptive data de lineated by success or failure of increasing to the next walking classification was examined. Base line characteristics of the 64 people who completed the study with initial gait speed of < 0.8 m/s included demographics, stroke characteristics, and baseline outcome meas ures. T-tests were utilized to determine significant differences in activity and participation (SIS) between those who succeeded and who failed to increase to the next walking classification at three months post-stroke. Results Baseline demographics for the 64 particip ants are presented in Table 3-2. The average age of the sample was 71.03 (10.64). Th ose successful in incr easing to the next ambulation classification were significantly younger than those w ho failed (p = .0023). The entire sample included 54.69% ma les and 78.13% were white. All other demographic characteristics and data related to participation and retention of participants specific to the Kansas City Stroke Re gistry are reported elsewhere [8]. Mean baseline gait speed was 0.50 (0.16) m/ s for the entire sample, 0.51 (0.17) m/s for those who succeeded and 0.49 (0.16) m/s for those who failed to increase to the next ambulation classification (p = 0.689). At thre e-months, gait speed for the entire group was 0.68 (0.24) m/s. As anticipated, a significa nt difference was detected for three month gait velocity scores between those who succeeded (0.82 (0.25) m/s) and failed (0.56 (0.16) m/s) to proceed to the next ambulation classification (p < 0.0001).

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42 Table 3-2. Baseline characteristics for partic ipations with initia l gait speed < 0.8 m/s (success = advancing to a highe r ambulation classification) All Success Fail p value Demographics Sample Size 64 29 35 Age, Year 71.0 (10.64) 66.72 (9.29) 74.6 (10.48) 0.0023 Male Sex, n (%) 35 (55%) 16 (46%) 19 (54%) 0.9434 Race (White), n (%) 50 (78%) 22 (44%) 28 (56%) 0.6902 Stroke Characteristics Orpington Prognostic Score 3.51 (0.84) 3.67 (0.89) 3.38 (0.78) 0.176 NIH Stroke Score 6.62 (3.33) 6.76 (3.46) 6.50 (3.27) 0.763 Right Hemisphere (%) 34 (53%) 15 (44%) 19 (56%) Left Hemisphere (%) 24 (38%) 9 (38%) 15 (63%) Brain Stem/Other (%) 4 (9%) 3 (83%) 1 (17%) 0.1530 Stroke Type, Ischemic (%) 57 (89%) 25 (44%) 32 (56%) 0.6920 Baseline Measures Barthel Index 40.16 (20.1) 40.17 (19.5) 40.16 (21) 0.998 Folstein MMSE 26.45 (4.23) 26.31 (3.72) 26.57 (4.67) 0.804 Geriatric Depression Scale 4.61 (3.29) 4.59 (3.61) 4.63 (3.06) 0.960 10 Meter-Walk, m/s at Baseline 0.50 (0.16) 0.51 (0.17) 0.49 (0.16) 0.689 Values are mean (SD) when appropriate The proportion of participants who succeed ed or failed to transition from one ambulation classification to the next is doc umented in Table 3-3. The highest proportion of participants who transitione d to the next classification had initial gait speed of less than 0.4 m/s; 63% of the household ambulators increased to the limited community ambulator classification. In contrast, only 38% of those initially considered a limited community ambulator (0.4 – 0.8 m/s) advanced to the community ambulation classification. In all, 45% of the sample was successful and 55% failed to increase to the next ambulation classifica tion at three months. Three-month outcomes associated with gait velocity are presented for the entire sample in Table 3-4. Age was significantly di fferent between those who were successful and who failed to transition to the next ambulation classification. Therefore age was controlled for at the < 0.100 leve l, as it is common that adju stment variables are retained

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43 in the model at a lower significance level than that of the main factors. Equal variance was established for all values except fo r the SIS-16 measure for the entire group. Therefore t-tests were deemed appropriate and equal (pooled) p-values were used except for the SIS-16 with the Satteerthwaite unequa l variance p-value us ed. After controlling for age, there were significant differences in SIS measured mobility and participation between those who succeeded and failed to a dvance to the next am bulation classification (p < 0.05). SIS ADL/IADL approached significa nce at 0.0524. When controlling for age and stratifying by baseline gait speed, those wi th initial gait velocity of < 0.4 m/s demonstrated significant diffe rences in SIS ADL/IADL, mobi lity, social participation, and SIS-16 measures between thos e who succeeded and failed (p < 0.05) (Table 3-5). In contrast, when age was controlled for and initial gait speed was between 0.4 m/s and 0.8 m/s, only participation scores were signifi cantly different between those who succeeded and those who failed to progress to th e next ambulation classification. Table 3-3. Proportions of success/fail for tran sitioning to next ambulation classification between baseline and 3 months All Initial Gait Velocity in m/s Success Fail < 0.4 (Household) 12 (63%) 7 (37%) 0.4–0.8 (Limited Community) 17 (38%) 28 (62%) Total n (%) Total 29 (45%) 35 (55%) Table 3-4. Three month outcomes for entire sample Success Failure p value p value^ Sample Size 29 35 SIS ADL/IADL 77.8 (14.1) 69.6 (19.0) 0.0589 N/A SIS Mobility 77.6 (2.2) 65.5 (16.1) 0.0015 0.0359^ SIS Participation 68.2 (8.6) 52.9 (20.6) 0.0031 N/A SIS – 16 81.3 (11.2) 71.6 (16.5) 0.0076 0.0844^ ^p-value after adjusting for age when age is significantly differe nt at the < 0.100 level

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44 Table 3-5. Three month outcomes stratified by gait speed Success Failure p value p value^ < 0.4 m/s at Baseline Sample Size 12 7 SIS ADL/IADL 75.5 (15.2) 51.4 (12.5) .0026 N/A SIS Mobility 77.1 (11.4) 50.5 (10.9 ) <.0001 N/A SIS Participation 66.1 (15.2) 42.9 (19.6) .0100 N/A SIS – 16 67.2 (12.5) 46.7 (9.8) <.0001 N/A 0.4 – 0.8 m/s at Baseline Sample Size 17 28 SIS ADL/IADL 79.6 (13.5) 74.2 (17.7) .2891 N/A SIS Mobility 77.9 (13.1) 69.3 (14.9 ) 0.0565 .2215^ SIS Participation 69.7 (21.0) 55.5 (20.5) .0308 N/A SIS – 16 81.8 (12.7) 67.6 (13.7) .1756 .0718^ ^p-value after adjusting for age when age is significantly differe nt at the < 0.100 level Discussion Gait speed is a valid and reliable assessm ent used frequently in elderly and poststroke research [9, 39, 40]. In the hopes of determining what is a clinically meaningful change in gait speed, researchers have attemp ted to determine relationships between gait speed and functional abilities [9, 10, 184]. Perry et al. and Lord et al. have previously examined gait velocity classi fications dependent on home and community ambulation in the post-stroke population [9, 10]. Potter and colleagues de monstrated a relationship between ADL performance and gait speed in an elderly population with various diagnoses [184]. This secondary analysis is the first study to examine the association between actual changes in post-stroke gait velocity and the reciprocal impact on performance of ADLs and IADLs and social participation as m easured by the SIS. Our results validate ambulation classification in both research and clinical rehabil itation settings, and specifically validates the prior classification developed by Perry et al. [9]. Additionally, our results show that a clini cally meaningful change in gait speed, as represented by an

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45 increase to the next ambulati on classification, was significantly associated with increased activity and participation scori ng, particularly for those with the slowest baseline gait velocity. Those who successfully transitioned to th e next ambulation cl assification were significantly younger then those who did not (p = 0.0023). When age was controlled for, those with baseline gait speeds of < 0.4 m/s demonstrated the greate st gains in activity and participation. Among those who walked less than 0.4 m/s, there were significant differences in SIS ADL/IADL, mobility, part icipation, and SIS-16 scores found between those who were successful and who faile d to advance to th e next ambulation classification. This may be attributable to th e fact that those with greater deficits had more opportunity for improvement and there we re less ceiling effects in the measures. After age was controlled for in the less impaired walking group, there was significant difference in participation, betw een those who did and did not successfully progress to the next classifi cation. SIS participation items include higher level home and community activities. Increased gait veloci ty was clearly attributable to increased abilities to complete higher level tasks at home and in the community. A significant difference in age contributed to mobility and SIS-16 scores. After controlling for age, the SIS-16 approached significance, but likely wa s related to the assessment of higher level ADLs and mobility. The lack of other significant findings is probably due to the participantsÂ’ high degree of independence at ba seline and subsequent ceiling effects of the measures. Stratifying by gait speed decreased th e sample size, possibly decreasing the detected differences between groups. Other pos t-stroke changes may have also impacted

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46 ability to complete ADLs, IADLs, mobility, and social participat ion. The severity of residual deficits is an additional component of post-stroke gait speed and activity and participation; side of the lesion, medical complications, rehabilitation days, assistive devices, caregiving, and overall support all pl ay a role in performance of post-stroke ADLs (including mobility) and IADLs and social participation. Research competed by Potter et al. may pr ovide some rationale for our specific findings [184]. The authors noted that some pa rticipants demonstrated greater gait speed but not greater ADL performance. They concl uded that some had difficulties specific to upper extremity ADL and IADL activities that were not reliant on gait. Therefore no relationship between ADLs and gait speed ex isted. Additionally, all of their study participants walking between 0.35 m/s and 0.5 5 m/s were independent in all ADLs. Our average baseline gait velocity was 0.50 (0.16) m/s for the entire sample, therefore, independence in ADLs would be expected for our participants, particularly for those walking initially walking greater than 0.4 m/s. An important strength of th is study is that the included participants are derived from a large parent study of community livi ng stroke survivors. This is a clinically significant group because even though they have returned home, they still have limited ambulation and other stroke related deficits Additionally, the assessors were blinded regarding intervention or cont rol placement and all assessmen ts were standardized. There are also limitations. Duncan et al. reports study limitations related to the intervention and possible bias in self-report because the c ontrol group participants knew their treatment assignment [8]. In future studies, we will assess the impact of post-stroke gait speed changes using a continuous measure ra ther than ambulation classification.

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47 Clinically meaningful change s in gait speed are important in rehabilitation clinics and research. Rehabilitation goals often incl ude increases in gait speed and endurance. The results of this study indi cate a significant impact of ga it velocity on performance of ADLs, IADLs, mobility, social participati on, and SIS-16 scores making increased gait speed an appropriate goal. These results are ve ry relevant as they validate the ambulation classification previously portrayed by Perry et al. [9] and represent a clinically meaningful change in gait speed; encourag ing the use of ambula tion classification for goal setting as it is related to overall increases in activity and participation. We have demonstrated that a clinically meaningful change in gait speed is related to highly significant improvement in all domains, part icularly for social participation. Such clinically meaningful gait speed changes may have a profound impact on overall quality of life and life satisfaction as both have been negatively a ssociated to restriction of activity and partic ipation [179, 180].

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48 CHAPTER 4 FEAR OF FALLING AFTER STROKE Introduction Stroke is the primary cause of disability in the United States and is the third leading cause of death in the country for those ove r 65 [2-4]. The American Heart Association reports that stroke is a common neurological event occu rring in 700,000 people a year [159]. Those surviving a stroke are often left with sensory, cognitive, motor, and balance impairments which negatively influence m obility and other activities of daily living (ADLs) and instrumental activities of daily living (IADLs) [222-224]. Fall rates increase due to post-stroke mobility deficits [78] and are considered the most common medical complication after stroke [166] The annual 30% [49] incidenc e of falls in the community dwelling elderly population rises to 73% within the first six months post-stroke [79]. Those who fall post-stroke may be prone to developing fear of falling. The development of fear of falling, with the cascading consequences of further mobility disability and declines in activity and participation ma y be related to an overall decrease of independence and quality of life [56, 170]. There is currently an abundan ce of research regarding falls after stroke and fear of falling in the community dwelling elderly, bu t there is little specific to how people describe the experience of fear of falling after st roke or how fear of falling develops among this population. Fear of falling has been operationally defined for this study as “a developed and lasting concern about falling related to a loss of confidence in balance abilities and mobility and is often related to an avoidance of activities that he/she remains

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49 capable of performing” [113, 140-143]. The incide nce of fear of falling is still unclear with researchers reporting f ear of falling in the community dwelling elderly ranging from 29%-92% for those recently sustaining a fall and 12%-65% for those without a recent fall [46, 70, 113, 115, 144-152]. Fear of falling inci dence may rise after stroke due to increased fall rates and declines in physical ability and mobility. Fear of falling has been associated with declines in performance of ADLs and IADLs, decreased participation, and community integration [43, 137, 143, 149, 151, 152, 189-192]. It has also been related to declin es in mobility, stair climbing, vision, general health status, depression, and poor life satisfaction, [10, 56, 113, 140, 147, 186], all negatively influencing general well-being and life satisfaction [193]. In addition, 20% to 55% of those with fear of falling have reported activity restri ction [42, 43, 113, 114, 143, 148, 186, 187, 225-230]. Activity restriction has been independently related to increased health care utilization, social isolation, depres sion, and caregiver burden and decreases in health, functional status, and i ndependence; resulting in overall decline in quality of life and life satisfaction [10, 43, 56, 113, 140, 143, 147, 149, 151, 152, 179, 180, 186, 189]. Activity restrictions related to functional deficits, falls, and fear of falling may result in reduced levels of independence and increasing need for additional care in the home [4]. Such decreases in abilities may be associated with increased caregiv er burden, strain, and depression [4, 79, 154]. Informal caregivers of people who have fallen report decreased social activity, increased stress and increased burden [79, 154]. This study is a secondary an alysis of existing qualita tive and quantitative data obtained from a larger study [11] The objectives of this study were (1) characterize poststroke fear of falling as de scribed by participants during the first six months following

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50 discharge home; (2) explore th e relationships between fear of falling and performance of ADLs, IADLs, and depression; and (3) examin e the relationship between fear of falling and caregiver depression, burden, and coping. Methods Design This study used both qualitative and quantitat ive methods to evaluate fear of falling in a population of veterans discharged home post-stroke. Participants who discussed fear of falling were identified in the sample enroll ed in the larger study. Content analysis was used to identify descriptors that characte rize fear of falling across six months after discharge home post acute stroke. Patton desc ribes content analysis as the process of identification, coding, and categorization of the primary patterns in qualitative data [231]. Quantitative data were obtained from standardized outcome measures collected from stroke survivors and their caregi vers at one and six months. Sample All veterans and caregivers included in this study met the in clusion criteria to participate in the larger study. The larger study included a total of 132 participants, 42 (32%) of these participants were identified w ith fear of falling at one or six months and were included in the sub-study. The inclusion criteria for veterans to be involved in the larger study were: (1) member of one of three ethnic groups (Caucasian, African American, or Puerto Rican Hispanic), (2) disc harged directly home from an acute care unit following a stroke, (3) a Mi ni Mental Status Exam (MMS E) of 18 or higher and able to verbally communicate at discharge, (4) have a caregiver willing to participate, and (5) sign a consent form or have the consent form signed by a proxy. Inclusion criteria for the informal caregivers were: (1) family or frie nd who the stroke survivor identified as a

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51 primary caregiver, (2) able to communicate verb ally, (3) willing to participate and sign a consent form. Exclusion criteria for both ve terans and caregivers was the inability to communicate or unwillingness to participate. Inclusion crite ria for this sub study were: (1) male; (2) described some aspect of fear of falling during the interviews at one or six months after discharge home. Each partic ipant gave informed consent prior to participation in the larger study through methods approved by the University of Florida (UF) Health Science Center Intuitional Re view Board (IRB) and the VeteransÂ’ Affairs Subcommittee on Clinical Inve stigations (VA SCI). This secondary analysis was approved by the UF IRB and VA SCI as an exempt study usin g existing data. Data Collection Data for the larger study were obtained to develop stroke recove ry trajectories for stroke survivors and their ca regivers after discharge home following acute stroke for three ethnic groups: African Am erican, White, and Puerto Rican Hispanic. The larger study is a longitudinal multi-site cohort study that includes qualitative and quantitative data derived from participant interviews a nd responses to questionnaires. Demographics were collected and baseline assessments were completed at the time of discharge. The study was designed so that each stroke surv ivor was interviewed for approximately 50 minutes. Qualitative data were obtained dur ing at home, in-depth, semi-structured interviews with the stroke survivors at one and six months. Interviews were completed with the stroke survivor first; probing questi ons were presented to capture stroke related disability and recovery. Interviews were ta pe recorded, transcribe d verbatim, verified, and entered into QSR N6, a software applicatio n designed to assist w ith qualitative data analysis [232].

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52 Fear of falling was not part of the fo rmal assessments. Participants instead spontaneously talked about fear of falling as an important part of managing their daily lives and their experiences post stroke. Transc riptions of all interv iews at one and six months for all 132 participants in the larger study were transferred in to a word processing document to enable identification of those who discussed fear of falling and concerns about falls, balance, and stability. Identification of participants with a f ear of falling was conducted via a semantic content analysis of the qualitative intervie ws. During reviews of interviews, the following word list was developed from the text. These words were then used to search all word documents: fall, fell, balance, trip, stumble, wobble, wabbly, slip, dizzy, dizziness, walk, walking, walker, cane, crutches, crutch, fear fearful, afraid, scared, worry, worried. Participants were identified for inclusion in this sub study when they specifically stated they were fearful or used statements /words regarding concern, confidence, or fear related to falling, balance, or mobility. A qua litative research speci alist validated this review of qualitative data and selection of participants with fear of falling. A second dataset was created that included all one a nd six-month interviews for participants identified as fearful. This dataset of interviews was coded to identify themes related to the experience of fear of falling. The interviews for those identified as f earful of falling were coded in N-6 to identify themes derived from the interviews All coding was validated by a rehabilitation health care professional. Characterizations quotes from participants, and recorded observations were used to identify three main recurrent themes that were refined during analyses. The three initial coding themes were “physical”, “psychosocial”, and

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53 “strategies for managing fear of falling”. Each code included sub-codes that have been listed in the coding structure found in Tabl e 4-1. Content analysis was completed to identify phrases and sentences under this co ding structure. A phrase or sentence could be coded under more than one primary or secondary theme. Table 4-1. Coding structure fo r qualitative interviews Primary Theme Secondary Themes Paralysis/hemiplegia Fell at time of stroke Balance/stability Dizziness Decreased participation Injury (such as hip frac ture or head injury) Falls as a Physical Event Talk about falls (stumble, trip, wabble, etc) Fear, afraid, concern Caregiver afraid will fall Fearing Falls Afraid of injury Walker/cane/WC/wall/other Relies on others Strategies for Managing Fear of Falling Being careful In addition to the qualitative interviews, stroke survivors comp leted standardized measures to assess activity performance of ADLs and IADLs and depression. Caregivers also completed standardized measures of depression and caregiver burden. Most often, caregivers and stroke survivor s were not interviewed with each other in the room. Outcome Measures Demographic data were collect ed at baseline for each str oke survivor and caregiver included in the qualitative and quantitative an alyses. Stroke survivor demographic data included age, gender, race/ethnicity, empl oyment status, income, and comorbidities recorded in their medical records. Base line standardized assessments included the Functional Independence Measure (FIM) to as sess functional status and the Mini Mental Status Exam (MMSE) [233, 234] to measure cognitive status.

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54 Functional status The FIM was utilized to measure functional status at baseline and was repeated at one and six months. The FIM is the most wi dely used method of assessing functional ability in persons with disability. Reliabi lity and validity of the FIM have been established [235, 236]. The FIM consists of 18-items and responses are scored on a 7level ordinal scale with six subscales: self-c are, sphincter control, transfer capability, locomotion, communication, and social cogni tion [235]. The FIM was utilized as a measure of severity of disability a nd functional status change over time. The Frenchay Activities Index (FAI) was used to measure IADLs. The FAI is a valid and reliable measure used to better assess normal living activ ities that occur among community dwelling adults [ 237]. The FAI is composed of 15 items and three major subscales: domestic chores, leisure/work, a nd outdoor activities. Scores range from 0 (inactive) to 45 (very active). Wilkinson et al [224] defined intact IADL function with an FAI score of over 15. Cognitive status The MMSE, a standardized test used to ev aluate basic cognitive abilities, assessed mild to moderate cognitive impairme nt for the stroke survivors [233, 234]. Depression Stroke survivor and caregiver depres sion was assessed using the Geriatric Depression Scale (GDS). The GDS has been used with the elderly population and those who are cognitively impaired. It is a 30-item scale with dichotomous variables (yes, no). Reliability, internal consistency, test-retest va lidity, and concurrent validity have all been established for the GDS [238]. Higher scores indicate increased leve ls of depression.

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55 Caregiver demographics, burden, and coping Demographic data on caregivers included age, gender, race/ethnicity, education, and relationship to patient. Caregiver bur den was measured using the Sense of Competence Questionnaire (SCQ). The SCQ c ontains 27 items with three different subscales: satisfaction with the care recipient, satisfaction with oneÂ’s own performance as a caregiver, and consequences of involvem ent in care for the personal life of the caregiver. Each item is scored using a four poi nt Likert type scale; burden is determined by summing the three scales. Higher scori ng indicates higher levels of burden experienced by the caregiver. The three subscales and the ag gregate burden score have all been demonstrated to be both valid and re liable for use with stroke survivors. The Sense of Coherence (SOC) questionnaire is a global measure of the ability to mobilize adaptive coping resources and is used as a measure of coping ability. The SOC is a 13-item, self-report scale which has b een utilized in over 20 countries [239, 240]. The items on the scale are on a Likert-type sc ale, and possible scores on the SOC range from 13-91, with higher scores indicating be tter ability to cope This scale has demonstrated strong internal validity, reliabi lity, and test-retest corr elations. Specifically, CronbachÂ’s alpha (internal cons istency) has ranged from 0.74 to 0.91 and the test-retest correlations for 12-month follow-ups ranged between 0.54 and 0.78. Analysis of Quantitative Data Quantitative data were used to describe the sample and to explore outcome measures. Descriptive statistics were used to describe participant demographic characteristics and performance of ADLs a nd IADLs, depression, and cognition for those who did and did not discuss fear of falling. A chi-square was completed to examine the proportions of participants who reported fear of falling at one month and six months post-

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56 stroke. Additional descriptive statistics for car egivers delineated by stroke survivor fear of falling status are included. Results Description of Sample The larger study enrolled 132 participants. Overall, 42 (32%) participants discussed fear of falling at either one or six months and 90 (68%) did not. See Table 4-2 for demographics of those with and without fear of falling. Table 4-2. Baseline data for those wi th and without fear of falling (FoF) Measures No FoF During 6 Months FoF During 6 Months n 90 42 Age 65.62 (9.68) 67.50 (11.93) White 29 (32%) 19 (45%) AA 34 (38%) 16 (38%) PR Hispanic 27 (30%) 7 (17%) Values are mean (SD) when appropriate A total of 33 (25%) participants were id entified as fearful at one month. Nine additional individuals described fear of falling at month six (7%). Thir teen participants (10%) discussed fear of falling at both one and six months. Theref ore, 20 participants (61%) who reported fear of falli ng at one month did not discus s fearful at six months. In total, 22 participants (17%) de scribed fear of falling at mont h six (13 were fearful at one and six months plus 9 new participants discu ssed fear at six months ). See Table 4-3 for demographics and baseline data for particip ants with fear at one and six months. Relationships Between Fear of fallin g, Functional Status, and Depression To explore the relationship between f ear of falling, functional status, and depression, we used descriptive statistics to provide a profil e for stroke survivors with fear of falling using data on ADLs, IADLs, depression, and cognition. See Table 4-4 for the mean scores and standard deviations of the FIM, FAI, MMSE, and GDS scores for

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57 the 42 unique individuals with fear of fa lling and the 90 who did not discuss fear. Participants demonstrated cons istent increases in FIM and FAI scores from baseline and one month to six months scores regardless of fear of falling st atus. T-tests were completed to assess differences between thos e with and without fear of falling. There were no statistical differences for any asse ssment scores between those who did and did not discuss fear of falling. The participants with fear of falling are slightly older and demonstrate a somewhat lower functional st atus. Depression and c ognition scores for those who did and did not discuss fear of falling did not appear to differ. Table 4-3. Baseline/discharge data for thos e discussing fear of falling at one and six months Month 1 FoF Month 6 FoF 33 FoF at Month 1 9 New FoF at 6 Months 13 FoF at 1 and 6 Months 22 Total FoF at 6 Months ( 9 + 13 ) n 33 (25%) 9 (7%) 13 (10%) 22 (17%) Age 64.58 (10.42) 78.22 (11.45) 68.08 (8.34) 72.23 (10.76) White 15 (45%) 4 (44%) 6 (46%) 10 (45%) AA 11 (33%) 5 (56%) 3 (23%) 8 (36%) PR Hispanic 7 (21%) 0 (0%) 4 (31%) 4 (18%) MMSE 26.52 (2.40) 25.44 (3.97) 26.92 (2.90) 26.65 (3.20) FIM Motor 73.10 (11.89) 74.56 (11.26) 74.69 (12.04) 74.63 (11.45) FIM Cog 31.18 (3.25) 31.22 (3.47) 31.84 (3.34) 31.59 (3.32) FIM Total 104.27 (14.20) 105.78 (11.64) 106.54 (2.9) 106.23 (13.17) (AA = African American, PR = Puerto Rican) In addition, we examined scoring of i ndividual FAI and FIM items specific to activities that may be directly affected by fear of falling. Sp ecifically we reported scoring for “social occasions” and “walking outsi de for > 15 minutes” on the FAI and the “walk/wheelchair” and “stairs” items from th e FIM. See Table 4-5 for specific FAI and FIM items for those who did and did not disc uss fear of falling. Fi ndings indicate that those with fear of falling scored somewhat lower on all FIM and FAI individual items at all assessment times. T-tests compared differe nces and only the FIM “stairs” item was

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58 statistically significant different between thos e with and without fear of falling. Such a result would not be uncommon in an elderl y population, and those post-stroke would be assumed to have increased difficulty with stair climbing. Changes in IADLs were reflected in the qualitative interviews. Some pa rticipants talked about falls at home, often in the bathroom, while performing basic ADL s. However, more often participants commented on falls and fear of falling during higher-level activities, such as walking around a store, community outings such as c hurch or social gatherings, and physical activities such as stair cl imbing. Thus IADLs and stair climbing were more likely impacted by fear of falling in this higher functioning post-stroke group of participants. These patterns of decreased performance in ADLs and IADLs for those with post-stroke fear of falling warrant future research to better understand the impact on activity, participation, and general quality of life. Table 4-4. Baseline/discharge data and outcome measures for those wi th and without fear of falling Measures No FoF FoF During 6 months n 90 42 Age 65.62 (9.68) 67.50 (11.93) Baseline FIM motor 75.71 (17.40) 73.40 (11.64) FIM cognition 31.14 (4.18) 31.19 (3.26) FIM total 106.86 (20.47) 104.60 (13.57) MMSE 26.76 (3.35) 26.29 (2.79) Month 1 FIM motor 80.46 (15.59) 78.86 (11.75) FIM cognition 32.27 (3.47) 31.19 (3.85) FIM total 112.73 (17.66) 110.05 (13.54) FAI 30.54 (10.44) 27.26 (10.58) MMSE 26.60 (3.05) 26.76 (2.54) GDS 8.84 (6.59) 9.33 (6.76) Month 6 FIM motor 82.84 (13.54) 82.69 (8.31) FIM cognition 32.45 (3.72) 32.33 (2.95) FIM total 115.30 (15.59) 115.03 (9.83) FAI 33.13 (11.29) 31.50 (11.40)

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59 Table 4-4. Continued table No FoF FoF During 6 months MMSE 27.17 (3.82) 26.53 (3.18) GDS 8.76 (6.92) 9.03 (5.98) Of the 33 participants who discussed fear of falling at month one, 13 (39%) continued to demonstrate fear of falling at m onth six. See Table 4-6 for frequency counts. A chi-square test was calculated examini ng the proportions of participants who were identified as fearful of falling at month 1 a nd who continued to be fearful at month 6. A significant interaction was found (X2, p< .05), and those with f ear of falling at month one were likely to demonstrate fear of falling at month six, see Table 4-7. Table 4-5. Scoring of FAI and FIM items for those with and without fear of falling Measures No FoF FoF During 6 months n 90 42 Baseline FIM, walk/wheelchair 5.78 (1.44) 5.48 (1.40) FIM, stairs 4.41 (2.34) 3.74 (2.30) Month 1 FAI, social occasions 2.50 (1.32) 2.26 (1.27) FAI, walking outside 2.90 (1.38) 2.60 (1.38) FIM, walk/wheelchair 6.17 (1.30) 5.76 (1.19) FIM, stairs 5.50 (1.87) 4.64 (2.08) Month 6 FAI, social occasions 2.84 (1.28) 2.78 (1.20) FAI, walking outside 2.97 (1.31) 2.61 (1.44) FIM, walk/wheelchair 6.39 (1.16) 6.08 (1.16) FIM, stairs 5.88 (1.75) 4.97 (1.95) * Statistically significant at the < 0.05 level Table 4-6. Frequency counts of fear of falling at one and six months FoF at 6 Months Total N o FoF FoF Missing FoF at Month 1 No FoF 90 9 99 FoF 16 13 4 33 Total 106 22 4 132 Table 4-7. Proportions of those with and w ithout fear of falling and chi square Month 1 Month 6 X2 Fear of Falling 25% 17% No Fear of Falling 75% 83% .000

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60 We also examined the relationship between fear of falling and caregiver depression, burden, and coping, see Table 48. Caregiver results are delineated by stroke survivor fear of falling status. There were no significant differences in caregiver scoring in depression, burden or coping skills between those providing care for those with and without fear of falling (p > 0.05). However, in the interviews, it was common for caregivers to comment on fears related to str oke survivor falls a nd injury. Additionally, many stroke survivors indicated dependence on ca regivers as a strategy to prevent falls. Table 4-8. Comparison of caregivers for partic ipants with and without fear of falling Measures No FoF FoF During 6 months n 90 42 Caregiver Age 59.80 (14.10) 59.38 (11.83) Month 1 GDS 6.62 (6.17) 6.97 (5.65) SCQ 51.64 (10.02) 50.08 (12.57) SOC 71.42 (13.37) 71.13 (16.65) Month 6 GDS 5.99 (5.57) 6.38 (5.63) SCQ 51.89 (11.76) 52.44 (11.99) SOC 70.54 (13.40) 71.53 (13.69) The Experience of Fear of Falling Post-Stroke Qualitative findings are described in this section. Initially, three major theme headings of “physical”, “psychosocial”, and “strategy” were used for the coding of the qualitative interviews. However, after a revi ew of the qualitative interview data and content analysis, it became evident that the development of fear of falling is a process, one that often impacts everyday life. Therefore, we present the characterization of fear of falling as the process that reflects the way st roke survivors experien ce fear of falling in their everyday lives. Data indicated that th e beginning of the proce ss was often the first sustained fall that usually occurred at th e time of the stroke. Participants discussed themes related to: bodily changes that influe nced falls and fear of falling, experiences

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61 related to a pervasive fear of fall and injur y, and the impact of f ear of falling on activity and everyday life. The unpredicta bility of falls and the resu ltant general acceptance of fear became evident, making strategies to manage falls and fear of falling necessary. Each of these themes are described below. See Table 4-9 for original content analysis frequencies derived from 33 month one interviews and 22 from month 6 interviews. Table 4-9. Content analysis frequencies (derived from 55 qualitative interviews) Primary theme Secondary Themes Frequency Paralysis/hemiplegia 15 27% Fell at time of stroke 22 40% Balance/stability 21 38% Dizziness 17 31% Decreased participation 14 25% Injury (such as hip fractu re or head injury) 6 11% Talk about falls (stumble, trip, wabble, etc) 45 82% Falls as a Physical Event Total from 55 intervie ws 140 occurrences Fear, afraid, concern 32 58% Caregiver afraid will fall 16 29% Afraid of injury 6 11% Fearing Falls Total from 55 interv iews 108 occurrences Walker/cane/WC/wall/other 35 63% Relies on others 9 17% Being careful 27 49% Strategies for Managing Fear of Falling Total from 55 interv iews 152 occurrences Onset of falling with the stroke event Falling at the time of a stroke is a co mmon experience and maybe a harbinger of development of fear of falling. For some, ha ving a fall signaled a possible second stroke, thus fear of falling and fear of another str oke became intertwined. Others discussed the fall at the time of the stroke and the experi ence of laying on the floor without someone to help them. Fear associated with a possible fa ll continued as indivi duals were concerned about falling in the future and being left on the floor for substantial periods of time. One participant stated “Yes, I fell. It was horrible; I lost control of my left arm, and my hand,

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62 my left foot. They failed me and that’s why I fell.” Others said “When I had the stroke, I was, I couldn’t walk. I had to crawl and if I tr ied to stand up at all my legs and things, just like that (unintelligible), sit down quick or you would fall over” and ”Well, when I fell, I knew I had a stroke and I was in such a ba d shape. I was sweatin ’, the worst kind of sweat and I asked the Lord.” Some stroke survivors who fell at the time of their stroke were living with the fear of another stroke and of future falls. One pa rticipant commented, “I was scared of falling, you know, uh it’s sorta like it was the othe r stroke, you know?” These participants equated the two and feared both. They reali zed a future stroke may further limit their abilities and independence. However, the f ear they live with daily may limit activity performance and in itself cause increased de pendence. These early experiences of falling with stroke onset represen t the early stages of development of fear of falling. Experiencing the changed body Another part of the process of developing fear of falling is related to experiencing the changed body. The residual motor deficits rela ted to mobility were of great concern to many participants. Changes in movement a nd ability of the lower extremities were frequently described. Individuals discussed not being able to move the same as before the stroke, and how this negatively impacts m obility, adding to the fear of falling. For example, participants made several statemen ts about fearing thei r legs would no longer function properly. Some said, “My legs give out real fast”, “I fear, I f ear a little that my legs don’t fail me”, and “No, that’s what I, I mean, well, as I told you before, you always worry about a leg failure or th at, right?” Others stated, “O h, am I tired. I’m tired. Legs just bow, buckle underneath me”, “I’ll be walk ing and all of a sudden I’m making love to the pavement”, and “Let’s see, after I walk so long (long pause) the feeling that any time

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63 now, the hip and leg are gonna gi ve out and I’m gonna fall, so I watch where I walk so that if I would fall, I wouldn’t fall into something too expensive (laughs).” Bodily changes were also related to the lo ss of balance, stability, and strength. For example, one man stated, “Uh, the only pr oblems I can think of I’m having now is balance…around me I have to hold onto thin gs, so it’s a balan ce problem and I’m, sometime I’m tipping and leaning and, prone to fall down.” Many talked freely about paralysis and hemiplegia, or general change s to their body, most often impacting balance and strength. Another commente d, “Well, weak in the knees still weak, have to walk more slowly and seems like sometimes I get a little wobbly cause I’m so weak and I haven’t got all my strength b ack yet.” Interestingly, some pa rticipants discussed concerns related to their balance, but did not specifically discuss falls or fear of falling. For instance, one man stated, “The only thing that concerns me is my balance, sometimes I lose my balance a little bit, that’s about it, no thing else . because the balance, it isn’t all right.” This may be important when utilizi ng fear of falling assessments, as participants may worry about balance, but not connect the concern to fear of future falls. Participants also discussed dizziness as a common aspect of the changed body. For many, dizziness became a part of everyday life making falls and fear of falling very common. When feeling dizzy, part icipants would discuss the need to curb walking or other activities and their need for assistance to maintain their balance and prevent a fall. As an example, one man stated “I get dizzy a nd I start falling down”, and others stated “I am insecure when I walk around the house, because I get dizzy, and I start falling face down. My nervous system doesn’t help me . and it’s not the same” or “Helped my wife

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64 in a lot of things . but now I can’t, because now . now I get dizzy and I start falling face down, I can’t I’m not stable, I don’t feel self-secured.” The participants who experienced post-s troke bodily changes often developed unpredictable episodes of imbala nce, instability, a nd dizziness. These changes were often related to hemiplegia, paralysis, and other post-stroke bodily change s and were reflected in their discussions of insecu rity in mobility and subsequent falls and fear of falling. A pervasive fear of the unpredictable Participants often described a pervasive sense of fear of falling. Some specifically talked about being afraid of a fall in the future. When the interviewer asked “What are your greatest concerns about your body now?” a participant stated “Fear of falling . I think that’s most concern of everybody is fa lls.” Others commented that “My greatest concern, that I don’t fall, that I don’t have another stroke” and “That is my fear, well, that I could fall. That is what, what they look for, that I don’t fall. Because in order to get up afterwards is hell.” Another stated “I fear a little that my legs . that my legs don’t fail me” and a different man said “One feels af raid of falling and even dying because I can get hit by something. I fell and almost hit my head, and thank God, I hit my butt instead.” Some participants avoided the use the words ‘afraid’ or ‘fearful’ in relation to falls. Instead, individuals often talked about having a concern about falls, balance, or safety. One standard interview question asked partic ipants about their c oncerns post-stroke, many discussed issues related to balance, st ability, dizziness, falls, safety, and walking. Some stated, “Trouble with balance, but I’m not about to fall” or “The only . thing that concerns me is the balance, sometimes I lose my balance a little bi t but that’s about it, nothing else.”

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65 Still others talked about fear of falling and not feeling safe. Safety therefore became an issue for participants while at home and in the communit y. One man said, “I don’t feel safe because the people there run around. And I don’t feel safe because I sit in a corner, and I tell you, they can trip you over.” and anot her stated “I didn’t feel safe ‘cause I didn’t know if I was goin’ to fall or what.” Participants characterizing f ear of falling often talked a bout the fear of sustaining future fall related injuries. Some made the following comments: “Ummm . I worry because there have been times where I have tripped and nailed myself” and “I’m afraid to. I’ll lose my balance. That’s a long wa ys down. The fall wouldn’t hurt you, it’s just the sudden stop (laughs) . That ground’s hard. Like I say that fall ain’t gonna hurt ya.” Of most concern were hip fractures and h ead injuries. For example, some stated, “Cause once you fall, could break a hip” and “I think it’s falli ng like it it’s it’ s falling, all the time that’s your worst fear, it’s falling a nd you might hurt or break a leg, or or or or you might uhh break a hip or something, I th ink you’re more conscious of it yeah.” Participants described genuine concern about being hurt after sustaining a fall and the subsequent impact on functi on, one commented, “Uh huh, it wo rries me; I can fall and hurt myself bad, or hit my head and make it worse than it is.” Those who discussed a fear of falling tended to discuss fears and concerns related to falls, future falls, and safety issues. Wh ile many participants specifically and openly discussed fear of falling, many others onl y admitted to concerns about balance and stability, not addressing actua l fear. Those who communicated fears about future falls were also likely to discuss fear of future injuries. For these individuals, the fear of falling, and the prevention of falls often b ecame a part of everyday life.

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66 Falls as an everyday life experience Participants discussed how falls became a frequent event and a common concern, often part of every day life. For example, one man said, “Sometimes I fall down, but I’m used to that now” For some, it seems that falls and fear of falling became all consuming. Regardless of the frequency of falls, fear of falling became a constant worry for some. Falls as a common occurrence were expressed in the following statements: “I always fall on the stairs” and “I’d make about four step s and I fall down” or “I worried about those steps out there . every time I fall it’s been on those steps” Some participants were concerned they would fall while out in the community and they addressed the embarrassment of a public fall. One individual commented, “Yeah. Uh huh. Do something that I find difficult to do, is not be embarrassed when you stumble and watch when you’re going somewhere.” They we re also concerned a bout how they looked while walking around and seemed to be worried about the stigma related to falls and decreased mobility. One man discussed the follo wing situation: “What worries me is that I had the experience that I fell down, I fell down on a street, someone called 911 and they picked me up because when I fell I had lost my conscience, because I have unbalance in my legs, I fall down.” Strategies for managing fear of falling Because fear of falling became an all consuming issue for some participants, talk about strategies for the prevention of future falls and management of fear of falling was common. Many participants discussed limiting everyday life activities, such as ADLs and IADLs at home and out in the community. One participant said, “You know, I was, I, I’m generally, well, no I wasn’t a real religious fella or anything like that but I did go to church occasionally with my wife on Sunda y, y’know. But uh, I, in fact the last time I

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67 went to church with her I lost my complete balance as we were walkin’ out o’church, because of the fall problem I have, and I almost knocked an old lady down. So that was a concern for me and I wouldn’t go back to church. Y’know, since the stroke I’ve lost confidence” Another man commented, “Well, we ll, like I tell you, I stutter, I stutter more, I wobble and uh that’s why I don’t, I don’t get out in the street s to much, I could, I have enough energy to go walk and more but I don’t” Others discussed limiting higher level skills, for example, “Well, now I can’t (laughing), now it’s impossible for me to climb a ladder. Now I can’t do it because I can’t get up the ladder (unintelligible), I fall.” Participants also discussed the use of assi stive devices such as walkers, canes, and wheel chairs to reduce falls and feel secure in their environment. As an example, one man said, “Yeah, I use a cane . ahhh . just to . for protection like in, so I don’t fall. Because, you know, somewhere along the line there was times when my leg felt like it was going to give out, but it didn’t.” and anothe r stated, “I keep my cane . because I never know whether one of my legs is gonna deci de to give out, so I keep my cane with me.” Other individuals expressed their us e of assistive devices with the following quotations, “Like that cane. Once I, I got it se t right by the door over there, ‘cause I go out that door, I’ll grab that cane, keep my ba lance . And when I get out the door I got things I can hang onto but once I get away from it I can’t. I gotta have that cane. So I gotta have that cane handy” or “Mainly the on ly reason I use the walker is for balance.” Interestingly, some even used the furniture or walls as an alternative to assistive devices. One participant stated, “I feel safe, like I say, the only thing th at I am, ahh, really concerned about in here is afte r I walk so long that my hip starts giving away and then I might fall into somebody of up against someth ing and break something, so I watch that.

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68 If I have a banister, I feel, great, hold on to the banister,” and an interviewer commented, “At times, it was noted that he was unsteady on his feet and often used the furniture for balance.” Participants also discussed where they used assistive device. Some commented on using a device at the store or out in the co mmunity, but not at home. For example, “Yeah, when I go in stores I carry my cane, and if I didn’t I’d probably fall” and another, “I got a walker in there that I use wh enever I go up the hospital. Here in the house I really don’t, I use a cane occasionally, but you have the wall here, everything’s close, see, y’know.” Others indicated reliance on others as an additional strategy util ized to reduce falls and manage fear of falling. One man stated, “I wa s settin’ there goin’ to the left like that, kept slidin’ to the left, cause the left side’s gone. It was in these he re foldin’ chairs. She pulls hers right up side of me, leans up there be fore so I can lean against her, instead of fallin’ out of the chair . Yeah, she’s sittin’ on the left and she slid her chair right up against mine, put her shoulder there where I can lean against her, keep me a slidin’ out, fallin’ out of this chair.” Many discussed dependence on their caregivers or others for the maintenance of balance and the prevention of fa lls. A participant referred to his caregiver and said, “Oh, sure, grabbin’ my hand, helpin’ me help straight up and down, keepin’ me from fallin’, she’ll walk along side of me every now and then, and, when I need her, you can tell you know why I’m a little more off balance.” Others commented, “Well my beliefs are that I never will walk alone, I can’t be alone at any time”, “I’m afraid of falling when she’s not here. I may hurt myself . Yeah, it makes a difference when she is here, I walk around and all th at.” and “Well, yes, he help s me get ready to go to the

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69 bathroom, because sometimes I fall.” One state d, “ . I want someone beside me to tell me things and . At least to prevent me from falling because the last time I fell.” Some caregivers were in the room during the interview and interjected information about falls and their fear of the stroke survivor falling in the future. Caregivers made the following comments, “I’m afraid he’s going to fall again”, “We don’t want him to fall”, and “Cause I’m afraid he’ll fa ll and wouldn’t be able to get up.” Stroke survivors were aware of their caregiver’s surv eillance of possible falls and attempts to decrease falls incidence. For instance, one stroke survivor commented, “My wife keeps attention when I walk, if I fall or something”, and another said, “She was watching me, to see if I was gonna fall.” Still others stated, “Well, they he lp me to stand up and walk, right? And they fear that I might fall, right?” Another said, “During the day my wife is here with me in the house, here . paying attention to ev erything I do, too. If go walk over there she’s paying attention that I d on’t fall or anything.” A general tool for the management of fear of falling and a reduction of future falls was simply to “be careful” or “cautious”. Fo r example, one man said, “I don’t know how to describe it but I think that you, uhh, are more cautious and more careful like, uhh, umm, in you, when you in bathrooms, if you ’re in the shower and, uhh, you have to use, sit down in the chair so that you won’t fa ll.” Being “careful” while performing specific mobility and other everyday activities was commonly addressed. Being cautious was expressed in the following ex cerpts: “It’s about the same, only thing you do is um, make sure you don’t trip over nothin’ an’ try your best to sit some place where you don’t fall off of nothin’” and “I walk slower. I take my time now . but I, uh, try my best to avoid tripping. I just slow down.” A nother said, “Yeah, I, uh, had to be very careful ‘cause, uh,

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70 I first come home, home from the hospital, I’d try to get outta’ my chair and I fell a couple a’ times.” One man said, “I have to be careful when I walk. I might fall.” Many different strategies were utilized for the prevention of falls and the management of the complexity of fear of fa lling. Participants discu ssed use of assistive devices, reliance on others, and simply being co gnizant of their own personal fall risks. To summarize, quantitative and qualitativ e data were analyzed to explore the characterization of fear of falling post-stroke The main themes derived from the data conceptualize the proces s of developing fear of falling, of ten beginning at the time of the stroke or initial fall and con tinuing as individuals live with f ear of falling as part of their daily lives and learn to manage their new bodies and strategize against future falls and fear of falling. Discussion To our knowledge, this is the first study examining the development of fear of falling in the post-stroke populati on. It is also the first qual itative studies on fear of falling in the elderly. Characteri zation of post-stroke fear of falling has been derived from analyses of the qualitative interviews and desc riptions of participants using standardized assessment scores. It is evident that falls a nd fear of falling are difficulties faced by many of those who have sustained a stroke, often on a daily basis. Our findings are based on secondary analyses and indicate that further study of the development of post-stroke fear of falling and its management at home and in the community is warranted. Many of the participants disc ussed falls and fear of fa lling during the first one to six months post stroke. The experience of falls is supported by research completed by Forster and Young who reported a 73% incidenc e of falls in the first six months poststroke [79]. Our reports of fear of falling were less than expected when compared to the

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71 community elderly population. Researchers have indicated fear of falling in 29%-92% of those recently sustaining a fall and 12%-65% of those without a r ecent fall [46, 70, 113, 115, 144-152]. In our study, 25% of participan ts (33 of 133) in month one and 32% (42/132) of all participants de scribed fear during the first six months post stroke. The lower fear of falling incidence may be related to the high functioning of our participants. At discharge, the mean FIM mo tor score for all participants, regardless of fear of falling, was 74.98 (15.79) with a range of 13 to 91, and 46% of all participants scored over 80 (maximum score is 91). This increased to 69% at month one and 74% at month six, indicating a hi gh functioning group of poststroke participants. Incidence may have been impacted by an all male veteran sample. Women are more likely to report a fear of falling [43, 144, 148, 155, 156] and men may underreport fear due to a perceived negative stigma rela ted to their fears. F ear of falling may be underreported because those with the greatest fear may not partake in research [155, 241] and others may fear ins titutionalization [143, 150]. Characterization of Fear of Falling Participants discussed the characterizati on of fear of falling. Through review and analysis of the interviews and exploration of post-stroke fear of falling functional status, we have determined five important factor s to include in the characterization: (1) The time of the initial fall: participan ts often discussed a first fall coinciding with their stroke. Participants realized they we re at risk for both future falls and strokes and indicated fear of decreas ed abilities and subsequent dependence on others. This provides a preliminary exploration of the timi ng and development of fear of falling after stroke. Timing may be related to the impact fear has on everyday life and important when evaluating assessments and the efficacy of interventions to reduce future falls and

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72 management of fear of falling. In preparation fo r discharge, clinicians need to talk with patients about fear of falling and how they will manage safely at home. (2) Post-stroke related changes in the body: resultant declines in balance, stability, strength, and dizziness due to hemiplegia and paralysis we re commonly discussed. Yates and colleagues previously determined increa sed fall risks related to post-stroke motor impairments [78]. This sample of post-stroke participants discussed decreased mobility due to the stroke and how it rela ted to increased risk of futu re falls and fear of falling. Rehabilitation clinicians and researchers need to develop interventions to support mobility and safety among those patient s with post-stroke fear of falling. (3) Pervasive fear of future falls: many natu rally discussed fear of falling, falls, and balance issues when discussing post-stroke co ncerns and barriers. In contrast, others discussed concern or trouble regarding balance, stability, strength, or their “legs giving out” but did not admit to actual fear. Pe rhaps the stigma of “being afraid” was overwhelming, especially for an all male veteran population. Researchers have demonstrated increased likelihood of female f ear of falling, perhaps our all male veteran population were embarrassed to admit such fears [43, 144, 148, 155, 156]. The difference in levels of fear may impact future resear ch when assessing fear of falling evaluations and preventative interventions. Participants not admitting to being fearful may require different interventions to manage issues re lated to fear of falling and future falls. (4) Every day fear of falling: it became ev ident that different levels of fear of falling existed within this population. There is an apparent continuum of fear of falling in this post-stroke population. It ra nges from a healthy sense of fear to an overwhelming, all encompassing, everyday, obtrusive f ear that is reflected in a “c onstant awareness” of falls

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73 risks and reported changes in activity and partic ipation. The development of fear of falling may have great impact on every day life, for some, it becomes all-consuming. Assessing fear of falling and ope nly discussing it with patients and their caregivers may help them manage more efficiently after discharge. (5) Strategies for the management of f ear of falling: par ticipants discussed individual techniques to manage falls and fear of falling. Ma ny discussed restricting or modifying performance of ADLs, IADLs, and social participation due to fear. Activity restriction is common in those with fear of falling in the community dwelling elderly [43, 113, 114, 143, 148, 186, 187, 225-230]. Those with f ear of falling related activity restrictions may become incr easingly dependent on caregiver s. This may impact stroke caregiver burden and depression. The use of assistive devices su ch as walkers, canes, and wheel chairs was also common. Others discu ssed being careful or cautious to manage falls and fear of falling. Overa ll, the development of strategi es indicate that a certain, normal, healthy fear may reduce future falls. Because fall risks are multidimensional [52, 65-67], the independent use of multiple strategies represents the need for multidimensional and individualized interventions. In summary, the process of fear of falling may begin at the time of the fall, often coinciding with the stroke, possibly making the time of the development of fear an important issue. We found that mobility issu es related to changes in the body greatly impact falls and fear of falling, and that th e actual fear or concer n may differ dependent on individuals, ability levels, and possible fear of stigma or embarrassment. Interestingly, participants naturally developed strategies to manage fear of falling and their fall risks.

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74 Perhaps this was necessary because for some, fear of falling became an all consuming aspect of life, impacting activity and participation. Limitations There are several limitations to this study. Our study primarily used qualitative data derived from a larger study. We were restricted to a convenience sample. Common to all qualitative studies, generaliza tion is not possible, although fi ndings may be informative across similar populations. This study was a secondary analysis of na turally occurring data. There was not a specific interview question relate d to falls, fear of falling, or post-stroke mobility, and we did not include a standardized fear of falli ng or falls incidence assessment. We were dependent on the use of natural conversati on elicited from questi ons regarding changes since stroke, concerns about bodily changes, and barriers to everyday life to determine those who would be considered fearful of falling. Although this naturalistic approach derives significant amounts of information, all of those with fear of falling may have not been considered in the qualitative and qua ntitative analyses, thus possibly reducing detection of fear of falling incidence. Future Research Because falls and fear of falling are unpred ictable, it is of great concern to those managing life post-stroke. This preliminar y research provides insight into the development of fear of falling after discha rge home post-stroke and the impact it has on activity and participation. It is evident that some people develop a fear that promotes safe completion of activities. However, others are likely to engage in a cycle of restricted activities and then experience further functi onal losses. This plays into the “vicious circle” portrayed by Delbaere and colleagues who suggested a pattern between reduced

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75 activities and decreased muscle strength and balance, leading to further declines in ADLs, increased falls incidence and fear of falli ng, and completing the circle with additional declines in activities [114]. Li et al. discussed the existing relationship between fear of falling and falls efficacy, the effect on balan ce and physical disabil ity, continuations in deteriorated health, and fu ture falls and development of fear of falling [194]. Clearly, more interventions are needed to assist stroke survivors and their caregivers to effectively manage this cycle. It is important to acknowledge the number of individuals who return home with signifi cant residual mobility losses. This was a relatively high functioning post-st roke population, and still many discussed fear of falling and the necessity to manage it with assistive devices, activ ity restriction, and decreased functioning. Future studies are needed to better define the natural history and experience of the development of post-stroke fear of falling in the home and community. The utilization of standardized fear of falling assessments, such as the Falls Efficacy Scale or the Activities-Specific Balance Confidence Scale, both recently found valid and reliable for the post-stroke population, [173-175] combined with qualitative data will provide more complete explanations to better understa nd fear of falling development. This dual qualitative and quantitative re search study provided prelimin ary information to justify future research. Addressing the impact of fear on quality of life and life satisfaction will be an important step in determining the impact of fear on post-stroke management. Important future research will include the advent of a fear of falling intervention specific for the post-stroke population. Likely, interventions to manage fear of falling and reduce

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76 fall rates will require individual treatment plans and will need to address the very issues described by these participants.

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77 CHAPTER 5 CONCLUSION The objective of this disser tation was to utilize seconda ry data from two larger studies to examine the impact of post-stroke gait velocity and fear of falling on activity and participation [8, 11]. In Chapter One, we presented a conceptual framework as the foundation for this research (Figure 1-2). The framework indicates th at those who sustain a stroke are likely to demonstrate sensor y, cognitive, and motor impairments. These impairments are reflected by mobility disabili ty, specifically changes in gait speed and fear of falling. Through reviews of the literature, we speculated that change in gait speed or the development of fear of falling would be associated with change in stroke survivor performance of activities of daily living (ADLs) (includi ng mobility), instrumental activities of daily living (IADLs) social participa tion. Additionally we believed that such changes in activity and partic ipation, and therefore independe nce, would impact caregiver depression, burden, and coping. Our findings indicate that mobility disability was demonstrated in both of our poststroke populations. The first study examined c linically meaningful changes in gait speed and the second study explored fear of falling. In support of our model, we observed that those who portrayed a clinically meaningf ul increase in gait speed demonstrated improved performance in ADLs, IADLs, mob ility, and social participation. We also described how a post-stroke veteran population ch aracterizes fear of falling in the first six months after discharge. In addition we exam ined post-stroke activ ity, participation, and depression in those discussing fear of falling.

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78 In the fist study, we measured the proporti ons of participants who successfully advanced to a higher ambulati on classification, demonstratin g a clinically meaningful change in gait velocity. Forty-five percent of our total sample transitioned to a higher classification; however, after baseline gait speed stratification, 63% of those walking slower than 0.4 meters/second (m/s) and 38% walking between 0.4 and 0.8 m/s advanced to the next ambulation classifi cation. This indicates that thos e with the slowest speed, and possibly the most severe mobility deficits, ha ve the greatest potential for gains in gait velocity. We also compared the differences in Stroke Impact Scale (SIS) measured ADLs/IADLs, mobility, social participation, and physical functioning (SIS-16) dependent on success or failure of advancement to a higher ambulation cl assification. After controlling for a significant diffe rence in age, all SIS scores for those with baseline gait velocity less than 0.4 m/s were statistically different. In co ntrast, only the participation score was significantly different for those w ith baseline gait velocity between 0.4 and 0.8 m/s. This suggests that a transition to the ne xt ambulation classificat ion is a clinically meaningful change because it is related to in creased function, particul arly for the initially more impaired stroke survivors. This is im portant as it validates the previous ambulation classification developed by Perry and colleague s [9]. More importantly, it confirms the use of ambulation classification in clinical and rehabilitation re search settings. It indicates that using ambulation classifi cation is appropriate for goal setting and that increased gait velocity is associated with highly signifi cant increases in performance of activity and participation.

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79 In the second study, we used qualitative and quantitative data to examine how poststroke veteran populations char acterize fear of falling and th e relationship between fear and ADLs, IADLs, and depression. Additional exploration of caregiver burden, coping, and depression for those caring for post-str oke individuals with fear of falling was completed. It is evident that those with fear demonstrated slightly lower scores for almost all Functional Independence Measure (FIM), Frenchay Activity Index (FAI), and depression scores. This trend was also established for individual FIM and FAI items and caregiver burden, de pression, and coping. Content analysis and review of the quali tative interviews verified that many participants naturally discussed post-stroke falls and fear of falling. We discovered that participants characterize post-stroke fear of fa lling with five main factors, including: (1) the importance of the time of the initial fall, (2) how post-stroke related changes in the body were associated with falls and fear of falling, (3) the pervasive fear and concern of future falls, (4) a continuum of everyday a nd unpredictable fear of falling, and (5) the natural strategies utilized and discussed by pa rticipants for the mana gement of fear of falling and the prevention of falls. These qualitative findings can be related to the examination of data retrieved from the standardized assessments. Participants discussed concern regarding falls during performance of both ADLs and IADLs, but it se ems that participants were more likely to discuss fear of falling in rega rd to the performance of highe r level activity at home and in the community. A small difference in FAI scores between those with and without fear of falling is apparent. This implies that fear of falling had a bigger impact on higher level IADLs in this relatively high functioning post-stroke population. Of additional

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80 importance, participants natura lly developed strategies to pr event falls and manage fear of falling. This may impact future interventions to decrease falls and fear of falling in this population. Programs may need to be individualized dependent on the need and abilities of the post-stroke individual. Th is exploration warrants future research of post-stroke fear of falling. In conclusion, we studied two post-st roke community dwelling populations, and although all participants lived at home, we established that many continued to demonstrate mobility impairments. The pres ent studies provide support of the negative impact of post-stroke mobility changes on act ivity and participation. Further study of gait speed change and its influence on activity and participation is warranted. Natural recovery may play an important role in im provement, but further ev idence is needed to determine appropriate interventions and timi ng of intervention to best enhance gait velocity and consequently improve activity, participation, and quali ty of life. Future research is necessary to better understand the true trajectory of the development of fear of falling after stroke. It is evident that fear of falling development was very individualized and our results provide preliminary data dem onstrating that prevention strategies also need to be individualized. This preliminar y research provides foundational data to continue investigation into post-stroke gait velocity and fear of falling, its impact on everyday life, and future interventions. Co llectively, this resear ch will promote our understanding of post-stroke mobility and its impact on functional independence.

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APPENDIX EVIDENCE BASED TABLE FOR FE AR OF FALLING AND ACTIVITY RESTRICTION

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82 Table A-1. Fear of falling and activity restriction Article Design Sample Fear of falling assess ment Functional Activity Measures Results Arfken, et al., 1994) [43] Crosssectional analysis of data from a prospective study 1 year follow up 890 “At the present time, are you very fearful, somewhat fearful, or not fearful that you may fall (again)?” Mobility activities Social activities Depression Life satisfaction Frailty measure 29% reported some FoF Of those very FoF o 48%not satisfied with life o 25% depression o decreased mobility and social activities o 91% reported at least one characteristic of frailty o 85% exhibited diminished balance o 22% were delayed in getting up after sustaining a fall o 85% impaired balance Brouwer, et al., 2004 [225] Crosssectional study 50 25 with FoF and activity curtailment and 25 without FoF Activity-specific Balance Confidence Human Activity Profile Those with FoF had lower ABC scores, decreased balance, sl ower gait speed, lower limb weakness, and decreased physical health. Similar activity profiles Bruce, et al., 2002 [230] Crosssectional analysis of baseline data from a longitudinal study 1500 females “Are you afraid to fall?” “Do you limit any household activities because you are frightened you may fall?” Do you limit any outside activities because you are frightened you may fall?” “Do you participate in any sports recreation or regular physical exercise?” “Please list any sports recreation or regular physical activity, including walking, that you undertook in the last 3 months” (duration / frequency) 34% afraid of falls More FoF in sedentary woman (45.2%) FoF was independent risk factor for nonparticipation in physical activity Analysis suggests FoF affected activity levels at a predisability stage in those with mildly impaired mobility Chandler, et al., 1996 [113] Secondary analysis of data from a prospective observational study of falls risk 149 male veterans “Would you say that you are somewhat afraid, not afraid, or very afraid of falling?” Mobility performance PADL and IADL Change in inside and outside activity 43% of the high risk participants were very afraid of falling 55% had prior fall Walk time and life space reduced in nonfallers who were very afraid of falling Increased depression in those very afraid of falling Decreased functional reach and activity for those very afraid of falling Decreased walk time, mobility skills, functional reach, IADL, PADL, lifespace, and activity levels if a faller AND very afraid to fall Walk time and IADL were independent contributors to FoF

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83Table A-1. Continued Article Design Sample Fear of falling assess ment Functional Activity Measures Results Cumming, et al., 2000 [143] Secondary data form a prospectivel OT home visit falls prevention study 418 at baseline and 307 at 12 months Falls Efficacy Scale “Are you afraid of falling?” ADLs Use of community services Those with lowest confidence in balance had increased risk of falls, poorer health, significant declines in ADLs, lowest QoL Delbaere, et al., 2004 [114] Crosssectional study and longitudinal study 225 (and 221 for longitudinal portion) Survey of Activities and Fear of Falling in the Elderly (SAFFE) Scale Survey of Activities and Fear of Falling in the Elderly (SAFFE) Scale Physical Performance Test (physical frailty) Frequent fallers more likely to avoid FoF related activities Mobility tasks avoided the most by those with FoF FoF activity restriction was correlated with physical performance, forward excursion of the center of pressure and muscle strength FoF and activity restriction predicted falls at the one year follow up Stated FoF is a “vicious circle of frailty” where individuals cease activities, but become more fearful and continue to reduce activity, decreasing mobility levels, and becoming more fearful Fletcher and Hirdes, 2004 [229] Crosssectional study 2,304, all receiving home care services “Limited going outdoors due to fear of falling (e.g., stopped using bus, goes out only with others) Minimum Data Set for Home Care Clinical Assessment Protocols IADLs 41.2% restricted activity de to FoF 27% sustained previous fall Predictive factors of activity limitation o Female o Older o Need for informal support for IADLs and ADLs o Being alone for long periods of the day o Impaired gait Howland, et al., 1998 [148] Sample survey 266 “Are you afraid of falling?” Falls history Social support 55% with FoF 56% of those with FoF restricted activity Fear related to function and social support Those with restricted activity: o Did not communicate about falls o Less social support o Knew someone who had fallen Kressign, et al., 2001 [228] Base-line crosssectional study 287 Falls Efficacy Scale Activity-specific Balance Confidence CESD 360 turn Functional reach 10-meter walk Single limb stands Picking up and object Chair stands About of participants demonstrated fear of falling Those fearful were more depressed and used a walking aid FoF was correlated to all functional measures Depression, walking-aid, slow gait speed, being African American related to being more fearful

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84Table A-1. Continued Li, et al., 2003 [227] Crosssectional study 256 Assessed with the Survey of Activities and Fear of Falling in the Elderly (SAFFE) Scale Assessed with the Survey of Activities and Fear of Falling in the Elderly (SAFFE) Scale Berg Balance Functional Reach Test Dynamic Gait Index for functional mobility IADLs Quality of Life via SF-12 FoF varied across diffe ring activities of the SAFFE 18% reported “high fear” Those with high fear more likely to report fear with activities of the SAFFE Fallers had a higher SAFFE score Difference in balance, functional mobility, IADLs, and QoL between those with high and low fear Those with higher fear engaged in fewer activities Murphy, et al., 2002 [187] Crosssectional study 1064 “Afraid of falling?” Those with FoF were asked “did the fear cause them to cut down on activities?” ADLs IADLs CESD 24% reported FoF 19% reported FoF and activity restriction Highest activity restriction seen in those over 80, female, white, poor health status, dizziness, 5 or more medications, visual impairment, two or more diseases Those with FoF and activity restriction were more likely to be 80 and over, female, 2 or more disease, slow timed physical performance, ADL disa bility, prior injurious fall, anxiety, and depressive symptoms Suzuki, et al., 2002 [226] Crosssectional study 135 “At the present time are you very fearful, somewhat fearful, or not fearful that you may fall?” Short Form 36 Health Survey measured health related quality of life and perceived changes in health status Females more likely to express FoF Older participants more likely to express FoF 63.7% were moderately or very fearful of falling Females: walking and bathing had significant relationship with FoF Majority of those who required assist with ADLs answered “moderately” or “very fearful” Those with increased FoF demonstrated decreased scoring on SF-36 subscales o Physical problems o Social functions o Physical function o General health perceptions Yardley and Smith, 2002 [186] Convenience sample form a pragmatic double-blind randomized controlled trial 224 at baseline and 166 at 6 months “In general, are you afraid of falling over?” Answered: not at all, a little, quite a bit, very much Consequence of Falling Scale (CoF) (validated by authors) o Assesses fall related fears of physical injury, long term functional incapacity, subjective anxiety, and social discomfort. Modified Survey of Activities and Fear of Falling in the Elderly (SAFFE) Scale Nearly half had fallen in previous year 57% reported FoF o 46% a little afraid o 11% more severe fear FoF related activity avoidance increased with age, female gender, and number of falls in the last year. Each increase of reported FoF was associated with an increased in activity avoidance and perceived negative falls consequences

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105 BIOGRAPHICAL SKETCH Arlene Ann Schmid was born in Buffalo, New York, in December 1974. She was raised in the Buffalo area and completed a dual bachelorÂ’s and masterÂ’s degree in occupational therapy from DÂ’Youville College in 1997. Arlene worked for five years on the island of Oahu in Hawaii as a therapist in a variety of clinical settings. She entered the University of Florida rehabilitation science doctoral program in January 2002. During her doctoral career, she was awarded a prestigi ous VA Pre-doctoral Health Rehabilitation Research Fellowship to fund her dissertation research. Arlene plan s to continue her research at the Indiana University Occupati onal Therapy Department and the Indianapolis Richard L. Roudebush VA Medical Center. She plans to comp lete research within the aging population, particularly looking at mob ility issues and health promotion. Arlene enjoys artwork, reading, exercise, being outside, spending time with her family and friends, and playing with her two dogs.